see
Textbooks:
Family Health Care Nursing
·
.
Read Chapters 11, 16, 17. Same chapters in 5th edition
.
Overview
· For this discussion, discuss the benefits and barriers to incorporating the family into care of the mental health patient. You are caring for a patient who has just been diagnosed with a mental health issue. Describe benefits and barriers that may occur when incorporating the family into caring for this patient.
References:
· Initial Post: Minimum of two (2) total references: one (1) from required course materials and one (1) from peer-reviewed references.
Words Limits
· Initial Post: Minimum 200 words excluding references
Family
Health Care
Nursing
Theory, Practice, and Research
fifth edition
3921_FM_i-xxiv 06/06/14 2:55 PM Page i
3921_FM_i-xxiv 06/06/14 2:55 PM Page ii
Great nursing care begins with great resources…
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Joanna Rowe Kaakinen, PhD, RN
Professor, School of Nursing
Linfield College
Portland, Oregon
Deborah Padgett Coehlo, PhD, C-PNP,
PMHS, CFLE
Developmental and Behavioral Specialist
Juniper Ridge Clinic
Bend, Oregon
Rose Steele, PhD, RN
Professor, School of Nursing, Faculty of Health
York University
Toronto, Ontario, Canada
Aaron Tabacco, RN, BSN
Doctoral Candidate, School of Nursing
Oregon Health and Science University
Portland, Oregon
Shirley May Harmon Hanson, RN, PhD,
PMHNP/ARNP, FAAN, CFLE, LMFT
Professor Emeritus, School of Nursing
Oregon Health and Science University
Portland, Oregon
Adjunct Faculty, College of Nursing
Washington State University
Spokane, Washington
Family
Health Care
Nursing
Theory, Practice, and Research
fifth edition
3921_FM_i-xxiv 06/06/14 2:56 PM Page iii
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Family health care nursing : theory, practice, and research / [edited by] Joanna Rowe Kaakinen, Deborah
Padgett Coehlo, Rose Steele, Aaron Tabacco, Shirley May Harmon Hanson. — 5th edition.
p. ; cm.
Includes bibliographical references and index.
ISBN 978-0-8036-3921-8
I. Kaakinen, Joanna Rowe, 1951- editor. II. Coehlo, Deborah Padgett, editor. III. Steele, Rose, editor. IV.
Tabacco, Aaron, editor. V. Hanson, Shirley M. H., 1938- editor.
[DNLM: 1. Family Nursing. 2. Family. WY 159.5]
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v
d e d i c a t i o n
VIVIAN ROSE GEDALY-DUFF, RN, DNS
Family nursing lost an exemplary family nurse and nursing scholar in September 2012: Vivian
Rose Gedaly-Duff, our esteemed colleague and friend. As one of the editors of Family Health Care
Nursing: Theory, Practice, and Research for the third and fourth editions, Vivian worked
tirelessly to elevate our collective thoughts and work. Even as Vivian courageously battled breast
cancer, she always asked about this edition of this textbook, offering her wisdom and insight to us.
Our work in family nursing, and family nursing itself, is infinitely better because of Vivian.
We dedicate this fifth edition of Family Health Care Nursing: Theory, Practice, and Research
to Vivian Rose Gedaly-Duff. Vivian, we miss you and think of you often.
—Editorial Team
JOANNA, DEBORAH, ROSE, AARON, AND SHIRLEY
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vii
f o r e w o r d
Iam proud to have been the founder of FamilyHealth Care Nursing: Theory, Practice, and Re-search with the first edition published in 1996.
I am honored to be asked to write this particular
foreword, as this fifth edition of this textbook at-
tests and gives credence to the ongoing evolution
and development in the field of family nursing.
This edition also marks the end of my long nursing,
academic, and writing career. It is time to retire and
step aside for the younger generation of family
nurses to take over. It is exciting to think about
what family nursing will look like in the future.
Family Health Care Nursing: Theory, Practice, and
Research (I–V) is an ever changing and comprehen-
sive textbook originally developed to reflect and
promote the art and science of family nursing. This
all-inclusive far-reaching compendium of integrat-
ing theory, practice, and research continues in this
fifth edition of this textbook.
All editions of this distinctive textbook were
published by F. A. Davis. I am grateful for their
faith, trust, and support in carrying the legacy of
family nursing forward. This book originated when
I was teaching family nursing at Oregon Health
and Science University (OHSU) School of Nursing
in Portland, Oregon. At that time there was no
comprehensive or authoritative textbook on the
nursing care of families that matched our program
of study. This was the impetus I needed to write
and edit the first edition of Family Health Care
Nursing: Theory, Practice, and Research (Hanson and
Boyd, 1996). The first edition met a need of nurs-
ing educators in many other nursing schools
around the world, so F. A. Davis invited me to re-
vise, update, and publish the second edition, which
came out in 2001. For the third edition, I asked two
additional scholars to join me in writing and editing
this edition: the late Dr. Vivian Rose Gedaly-Duff
from OHSU (see Dedication) and Dr. Joanna
Rowe Kaakinen, then from the University of
Portland and now from Linfield College Portland
campus. A separate Instructors’ Manual, a new feature
of the third edition, was developed by Dr. Deborah
Padgett Coehlo when she was on faculty at Oregon
State University (Bend, OR). This wonderful infu-
sion of nursing colleagues and scholars elevated this
textbook to a whole other level.
After my retirement from active full-time
teaching and professional practice, the capable
Dr. Joanna Rowe Kaakinen assumed the leadership
for the fourth edition (2010). Along with Drs. Vivian
Gedaly-Duff, Deborah Padgett Coehlo, and myself,
we produced the fourth edition of this cutting-
edge family nursing textbook that included some
Canadian-specific family content. For the fourth edi-
tion Dr. Deborah Padgett Coehlo wrote the first on-
line teachers’ manual that accompanied this edition;
two other online chapters were added to this fourth
edition: research in families/family nursing and
international family nursing. Dr. Joanna Rowe
Kaakinen is the lead editor of this fifth edition. In
thinking about the sixth edition and the future
of the text, a younger family nursing scholar
Aaron Tabacco (PhC) was added to the editorial
team. Dr. Rose Steele, our Canadian colleague from
Toronto, joined our writing team. Dr. Deborah
Coehlo continues as editor and now brings the
perspective of family nursing from her pediatric
practice as a PNP in Bend, Oregon. My last contri-
bution to this book is as editor on this fifth edition.
This edition has taken on a much more international
flair, especially for North America, as Canadian au-
thors were added to many of the writing teams.
The first three editions of this textbook received
the following awards: the American Journal of
Nursing Book of the Year Award and the Nursing
Outlook Brandon Selected Nursing Books Award.
Every new edition has been well received around
the world and every edition has brought forth new
converts to family nursing. Previous editions of the
text were translated or published in Japan, Portugal,
India, Pakistan, Bangladesh, Burma, Bhutan, and
3921_FM_i-xxiv 06/06/14 2:56 PM Page vii
Nepal. I anticipate even more international interest
for this fifth edition as the message of family nurs-
ing continues to spread across the globe. It is also
interesting to note that online sales of the book
come from many countries.
Contributors to this edition were selected from
distinguished practitioners, researchers, theorists,
scholars, and teachers from nursing and family so-
cial scientists across the United States and Canada.
Like any good up-to-date textbook, some subject
matter stayed foundational and other subject mat-
ter changed based on current evidence. As family
nursing evolved, different authors and editors were
added to the writing team. This textbook is a mas-
sive undertaking involving 30 committed nurses
and family scholars, not to mention the staff of
F. A. Davis. The five editors of this fifth edition are
grateful for this national and international dedica-
tion to family nursing. Together we all continue to
increase nursing knowledge pertaining to the nurs-
ing care of families across the globe.
This fifth edition builds on the previous edi-
tions. The primary shift in the direction of this edi-
tion is to make family nursing practice meaningful
and realistic for nursing students. The first unit of
the book addresses critical foundational knowledge
pertaining to families and nursing. The second unit
concentrates on theory-guided, evidence-based
practice of the nursing care of families across the
life span and in a variety of specialties. In addition
to the large increase of Canadian contributors, sub-
stantial updates took place in all chapters. A new
chapter, Trauma and Family Nursing, was added.
Other new or updated features of this edition in-
clude the following:
■ A strong emphasis on evidence-based prac-
tice in each chapter.
■ Five selected family nursing theories inter-
woven throughout the book.
■ Family case studies that demonstrate the
practice of family nursing.
■ Content that addresses family nursing in both
Canada and the United States (North America).
Family nursing, as an art and science, has trans-
formed in response to paradigm shifts in the pro-
fession and in society over time. As a nursing
student in the United States during the 1950s, the
focus of care was on individuals and centered in
hospitals. As time passed and the profession ma-
tured, nursing education and practice expanded and
shifted to more family-centered care and community-
based nursing. The codified version of family
nursing really emerged and peaked during the
1980s and 1990s in the United States and Canada,
where the movement was headquartered. Even
though this initial impetus for family nursing
came from North America, the concept spread
quickly around the world. Asian countries, in par-
ticular, have embraced family nursing, and though
they initially translated books coming from the
United States or Canada, they have matured to
creating their own books and theories for family
nursing. The Scandinavian countries have expanded
their own scholarship and tailored family nursing
to their own unique countries and populations.
Today, it could be said that family nursing is with-
out borders and that no one country owns family
nursing.
The International Family Nursing Association
(IFNA) was established in 2009 for the purpose of
advancing family nursing and creating a global
community of nurses who practice with families.
The 11th International Family Nursing Conference
(and the first official conference of IFNA) took
place June 19–22, 2013, in Minneapolis, Minnesota,
USA. This new professional body (IFNA) is assum-
ing the leadership for keeping family nursing at the
forefront of theory development, practice, research,
education, and social policy across the globe.
Family nursing has become more than just a
“buzzword” but rather an actual reality. Family
nursing is being taught in many educational insti-
tutions, practiced in multiple health care settings,
and globally actualized by many nurses. Nursing
care to individuals, regardless of place, occurs
within the context of families and communities—
all of which can be called “family nursing.” Most
everyone in the nursing profession agrees that a
profound, reciprocal relationship exists between
families, health, and nursing.
This book and current edition recognizes that
nursing as a profession has a close alignment with
families. Nurses share many of the responsibilities
with families for the care and protection of their
family members. Nurses have an obligation to help
families promote and advance the care and growth
of both individual family members and families as a
unit. This textbook provides nursing students the
knowledge base and the processes to become effec-
tive in their nursing care with families. Additionally,
families benefit when already practicing registered
viii Foreword
3921_FM_i-xxiv 06/06/14 2:56 PM Page viii
nurses use this knowledge to reorganize their nurs-
ing care to be more family centered and develop
working partnerships with families to strengthen
family systems. Family Health Care Nursing: Theory,
Practice, and Research was written by nurses for
nurses who practice nursing care of families.
Students will learn how to tailor their assessment
and interventions with families in health and ill-
ness, in physical as well as mental health, across
the life span, and in all the settings in which
nurses and families interface. I firmly believe that
this fifth edition of this textbook is at the cutting
edge of this practice challenge for the next decade,
and will help to marshal the nursing profession
toward improving nursing care of families.
—SHIRLEY MAY HARMON HANSON, RN, PhD,
PMHNP/ARNP, FAAN, CFLE, LMFT
Professor Emeritus, School of Nursing
Oregon Health and Science University
Portland, Oregon
Adjunct Faculty, College of Nursing
Washington State University
Spokane, WA
Foreword ix
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xi
p r e f a c e
Ask anyone about a time they were affected by
something that happened to one of their family
members, and you will be overwhelmed with the
intensity of the emotions and the exhaustive details.
Every individual is influenced significantly by their
families and the structure, function, and processes
within their families. Even individuals who do not
interact with their families have been shaped by
their families. The importance and connection be-
tween individuals and their families have been stud-
ied expansively in a variety of disciplines, including
nursing.
As such, the importance of working in partner-
ships with families in the health care system is evi-
dent. Yet many health care providers view dealing
with patients’ families as an extra burden that is too
demanding. Some nurses are baffled when a family
acts or reacts in certain ways that are foreign to their
own professional and personal family experiences.
Some nurses avoid the tensions and anxiety that
exist in families during a crisis situation. But it is in
just such situations that families most need nurses’
understanding, knowledge, and guidance. The pur-
pose of this book is to provide nursing students, as
well as practicing nurses, with the understanding,
knowledge, and guidance to practice family nursing.
This fifth edition of the textbook focuses on theory-
guided, evidence-based practice of the nursing care
of families throughout the family life cycle and
across a variety of clinical specialties.
Use of the Book
Family Health Care Nursing: Theory, Practice, and
Research, fifth edition, is organized so that it can be
used on its own and in its entirety to structure a
course in family nursing. An alternative approach
for the use of this text is for students to purchase
the book at the beginning of their program of study
so that specific chapters can be assigned for specialty
courses throughout the curriculum. The fifth edition
complements a concept-based curriculum design.
For example, Chapter 16, Family Mental Health
Nursing, could be assigned when students take their
mental health nursing course, and Chapter 13,
Family Child Health Nursing, could be studied
during a pediatric course or in conjunction with
life-span–concept curriculum for chronic illness
and acute care courses. Thus, this textbook could
be integrated throughout the undergraduate or
graduate nursing curriculum.
Canadian Content
Moreover, this fifth edition builds on successes
of the past editions and responds to recommenda-
tions from readers/users of past editions. Because
of the ever-evolving nature of families and the
changing dynamics of the health care system, the
editors added new chapters, consolidated chapters,
and deleted some old chapters. Importantly, this
fifth edition incorporates additional Canadian-
specific content. Though it is true that the United
States and Canada have different health care
systems, so many of the stressors and challenges
for families overlap. One of the editors for this
fifth edition, Rose Steele, is from Toronto and
helped expand our concepts about Canadian nurs-
ing. Moreover, a number of chapters in the text
have a combined author team of scholars from both
Canada and the United States: Chapter 5, Family
Social Policy and Health Disparities; Chapter 12,
Family Nursing With Childbearing Families; and
Chapter 17, Families and Community/Public Health
Nursing. Two chapters in this edition were writ-
ten by an all-Canadian team: Chapter 6, Relational
Overview of the Fifth Edition
3921_FM_i-xxiv 06/06/14 2:56 PM Page xi
Nursing and Family Nursing in Canada and
Chapter 10, Families in Palliative and End-of-Life
Care. All of the chapters in this edition include in-
formation, statistics, programs, and interventions
that address the individual needs of families and fam-
ily nurses from both Canada and the United States.
Additions and Deletions
This edition contains one new chapter: Chapter 11,
Trauma and Family Nursing. Between the advanced
understanding of brain function and general physi-
ology; the mind and body response to severe and/or
prolonged stress; and the increase in trauma experi-
enced by families through war, natural disasters, and
family violence, the need to understand, prevent,
treat, and monitor the effects of trauma on individ-
uals and families has never been more vital. There-
fore, we felt it was essential to include ways family
nurses could work with these families. All chapters
have been changed and updated significantly to reflect
the present state of “family,” current evidence-based
practice, research, and interventions. Many of the
chapters now include a second family case study to
illustrate further the evidence discussed throughout
that specific chapter. We deleted the chapter on the
future of families and family nursing because
changes in health care reform, social policy, and
families are occurring at such a rate that it is
impossible to predict what the future will hold.
Structure of the Book
Each chapter begins with the critical concepts to be
addressed within that chapter. The purpose of plac-
ing the critical concepts at the beginning of the
chapter is to focus the reader’s thinking and learning
and offer a preview and outline of what is to come.
Another organizing framework for the book is pre-
sented in Chapter 3, Theoretical Foundations for
the Nursing of Families. This chapter covers the im-
portance of using theory to guide the nursing of
families and presents five theoretical perspectives,
with a case study demonstrating how to apply these
five theoretical approaches in practice. These five
theories are threaded throughout the book and are
applied in many of the chapter case studies. As stated
earlier, most of the chapters include two case studies;
all of the case studies contain family genograms and
ecomaps.
The main body of the book is divided into three
units: Unit 1: Foundations in Family Health Care
Nursing, which includes Chapters 1 to 5; Unit 2:
Families Across the Health Continuum, which in-
cludes Chapters 6 to 11; and Unit 3: Nursing
Care of Families in Clinical Areas, which includes
Chapters 12 to 17. The Family Health Care Nursing
Instructors’ Guide is an online faculty guide that pro-
vides assistance to faculty using/teaching family
nursing or the nursing care of families in a variety
of settings. Each chapter also includes a Power-
Point presentation, Case Study Learning Activities,
and other online assets, which can be found at
www.DavisPlus.com.
UNIT 1
Foundations in Family Health
Care Nursing
Chapter 1: Family Health Care Nursing: An
Introduction provides foundational materials es-
sential to understanding families and nursing. Two
nursing scholars have worked on this chapter now
for three editions: Joanna Rowe Kaakinen, PhD,
RN, Professor at the Linfield College School of
Nursing and Shirley May Harmon Hanson, RN,
PhD, PMHNP/ARNP, FAAN, CFLE, LMFT,
Professor Emeritus at Oregon Health and Science
University School of Nursing. The chapter lays
down crucial foundational knowledge about fami-
lies and family nursing.
The first half of the chapter discusses dimen-
sions of family nursing and defines family, family
health, and healthy families. The chapter follows
with an explanation of family health care nursing
and the nature of interventions in the nursing
care of families, along with the four approaches
to family nursing (context, client, system, and
component of society). The chapter then presents
the concepts or variables that influence family
nursing, family nursing roles, obstacles to family
nursing practice, and the history of family nurs-
ing. The second half of the chapter elaborates on
theoretical ideas involved with understanding
family structure, family functions, and family
processes.
Chapter 2: Family Demography: Continuity
and Change in North American Families pro-
vides nurses with a basic contextual orientation to
the demographics of families and health. All three
authors are experts in statistics and family demog-
raphy. Three sociologists joined to update and
xii Preface
3921_FM_i-xxiv 06/06/14 2:56 PM Page xii
write this chapter: Lynne M. Casper, PhD, Profes-
sor of Sociology and Director of the South
California Population Research Center, University
of Southern California (USC); Sandra M. Florian,
MA, PhD Candidate, who is a graduate student/
research assistant, Population Research Center at
USC Department of Sociology; and Peter D. Brandon,
PhD, Professor, Department of Sociology, The
University at Albany (SUNY), New York. This
chapter examines changes and variations in North
American families in order to understand what
these changes portend for family health care nurs-
ing during the first half of this century. The subject
matter of the chapter is structured to provide fam-
ily nurses with background on changes in the
North American family so that they can understand
their patient populations. The chapter briefly
touches on the implications of these demographic
patterns on practicing family nursing.
Chapter 3: Theoretical Foundations for the
Nursing of Families is co-authored by two of the
editors of this textbook: Joanna Rowe Kaakinen and
Shirley May Harmon Hanson. This chapter lays the
theoretical groundwork needed to practice family
nursing. The introduction builds a case for why
nurses need to understand the interactive relation-
ship among theory, practice, and research. It also
makes the point that no single theory adequately de-
scribes the complex relationships of family structure,
function, and processes. The chapter then continues
by delineating and explaining relevant theories,
concepts, propositions, hypotheses, and conceptual
models. Selected for this textbook, and explained in
this chapter, are five theoretical/conceptual models:
Family Systems Theory, Developmental and Family
Life Cycle Theory, Bioecological Theory, Rowland’s
Chronic Illness Framework, and the Family Assess-
ment and Intervention Model. Using basic family
case studies, the chapter explores how each of the five
theories could be used to assess and plan interven-
tions for a family. This approach enables learners to
see how different interventions are derived from dif-
ferent theoretical perspectives.
Chapter 4: Family Nursing Assessment and
Intervention is co-authored by Joanna Rowe
Kaakinen and Aaron Tabacco, BSN, RN, Doctoral
Candidate, who is a Student Instructor, Under-
graduate Nursing Programs at Oregon Health
Sciences University, Portland, Oregon. The pur-
pose of this chapter is to present a systematic
approach to develop a plan of action for the fam-
ily, with the family, to address its most pressing
needs. These authors built on the traditional nurs-
ing process model to create a dynamic systematic
family nursing assessment approach. Assessment
strategies include selecting assessment instru-
ments, determining the need for interpreters, as-
sessing for health literacy, and learning how to
diagram family genograms and ecomaps. The
chapter also explores ways to involve families in
shared decision making, and explores analysis, a
critical step in the family nursing process that
helps focus the nurse and the family on identifi-
cation of the family’s primary concern(s). The
chapter uses a family case study as an exemplar to
demonstrate the family nursing assessment and
intervention.
Chapter 5: Family Social Policy and Health
Disparities exposes nurses to social issues that
affect the health of families and strongly challenge
nurses to become more involved in the political as-
pects of health policy. This chapter is co-authored
by two experienced nurses in the social policy arena
and a sociology professor: Isolde Daiski, RN,
BScN, EdD, Associate Professor, School of Nurs-
ing, from York University, Toronto, Ontario,
Canada; Casey R. Shillam, PhD, RN-BC, Director
of the BSN program at Western Washington State
University, Bellingham, Washington; Lynne M.
Casper, PhD, Professor Sociology at the Univer-
sity of Southern California; and Sandra Florian,
MA, a graduate student at the University of South-
ern California. These authors discuss the practice
of family nursing within the social and political
structure of society. They encourage the readers to
understand their own biases and how these
contribute to health disparities. In this chapter, stu-
dents learn about the complex components that
contribute to health disparities. Nurses are called
to become politically active, advocate for vulnera-
ble families, and assist in the development of
creative alternatives to social policies that limit ac-
cess to quality care and resources. These authors
present the difficulties families face in the current
political climate in both the United States and
Canada, as the legal definition of family is being
challenged and family life evolves. The chapter
touches on social policies, or lack of them, specifi-
cally policies that affect education, socioeconomic
status, and health insurance. The chapter also
explores determinants of health disparities, which
include infant mortality rates, obesity, asthma,
HIV/AIDS, aging, women’s issues, and health
literacy.
Preface xiii
3921_FM_i-xxiv 06/06/14 2:56 PM Page xiii
UNIT 2
Families Across the Health Continuum
Chapter 6: Relational Nursing and Family
Nursing in Canada is co-authored by Canadian
nursing scholars Colleen Varcoe, PhD, RN, Asso-
ciate Professor and Associate Research Director at
the University of British Columbia, School of
Nursing in Vancouver, British Columbia, Canada;
and Gweneth Hartrick Doane, PhD, RN, Profes-
sor, School of Nursing, University of Victoria,
British Columbia, Canada. Relational inquiry fam-
ily nursing practice is oriented toward enhancing
the capacity and power of people/families to live a
meaningful life (meaningful from their own per-
spective). Understanding and working directly with
context provides a key resource and strategy for
responsive, health-promoting family nursing prac-
tice. Grounded in a relational inquiry approach,
this chapter focuses specifically on the significance
of context in family nursing practice in Canada. The
chapter highlights the interface of sociopolitical,
historical, geographical, and economic elements in
shaping the health and illness experiences of fami-
lies in Canada and the implications for family nurs-
ing practice. The chapter covers some of the key
characteristics of Canadian society, and how those
characteristics shape health, families, health care,
and family nursing. Informed by a relational in-
quiry approach to family nursing, the chapter turns
to the ways nurses might practice more respon-
sively and effectively based on this understanding.
Chapter 7: Genomics and Family Nursing
Across the Life Span is authored by a nursing ex-
pert in nursing genomics, Dale Halsey Lea, MPH,
RN, CGC, FAAN, Consultant, Public Health
Genomics and Adjunct Lecturer for University of
Maine School of Nursing. The ability to apply an
understanding of genetics in the care of families is
a priority for nurses and for all health care
providers. As a result of genomic research and the
rapidly changing body of knowledge regarding ge-
netic influences on health and illness, more empha-
sis has been placed on involving all health care
providers in this field, including family nursing.
This chapter describes nursing responsibilities for
families of persons who have, or are at risk for
having, genetic conditions. These responsibilities
are described for families before conception,
with neonates, teens in families, and families with
members in the middle to elder years. The goal of
the chapter is to describe the relevance of genetic
information within families when there is a ques-
tion about genetic aspects of health or disease for
members of the family. The chapter begins with a
brief introduction to genomics and genetics. The
chapter then explains how families react to finding
out they are at risk for genetic conditions, and
decide how and with whom to disclose genetic in-
formation, and the critical aspect of confidentiality.
The chapter outlines the components of conduct-
ing a genetic assessment and history, and offers
interventions that include education and resources.
Several specific case examples and a detailed case
study illustrate nurses working with families who
have a genetic condition.
Chapter 8: Family Health Promotion is writ-
ten by Yeoun Soo Kim-Godwin, PhD, MPH, RN,
Professor of Nursing; and Perri J. Bomar, PhD,
RN, Professor Emeritus, who are both from
the School of Nursing at the University of North
Carolina, Wilmington. Fostering the health of the
family as a unit and encouraging families to value
and incorporate health promotion into their
lifestyles are essential components of family nurs-
ing practice. The purpose of this chapter is to in-
troduce the concepts of family health and family
health promotion. The chapter presents models to
illuminate these concepts, including the Model of
Family Health, Family Health Model, McMaster
Model of Family Functioning, Developmental
Model of Health and Nursing, Family Health Pro-
motion Model, and Model of the Health-Promoting
Family. The chapter also examines internal and
external factors through a lens of the bioecological
systems theory that influence family health promo-
tion. It covers family nursing intervention strate-
gies for health promotion, and presents two family
case studies demonstrating how different theoreti-
cal approaches can be used for assessing and inter-
vening in the family for health promotion. The
chapter also discusses the role of nurses and inter-
vention strategies in maintaining and regaining the
highest level of family health. Specific interventions
presented include family empowerment, anticipa-
tory guidance, offering information, and encour-
aging family rituals, routines, and time together.
Chapter 9: Families Living With Chronic
Illness is co-authored by Joanna Rowe Kaakinen
and Sharon A. Denham, DSN, RN, Professor,
Houston J. and Florence A. Doswell Endowed
xiv Preface
3921_FM_i-xxiv 06/06/14 2:56 PM Page xiv
Chair in Nursing for Teaching Excellence, Texas
Woman’s University, Dallas, Texas. The purpose
and focus of this chapter is to describe ways for
nurses to think about the impact of chronic illness on
families and to consider strategies for helping families
manage chronic illness. The first part of this chapter
briefly outlines the global statistics of chronic illness,
the economic burden of chronic diseases, and three
theoretical perspectives for working with families liv-
ing with chronic illness. The majority of the chapter
describes how families and individuals are challenged
to live a quality life in the presence of chronic illness
and how nurses assist these families. Specific atten-
tion is drawn to families with children who have a
chronic illness and families with an adult member
living with a chronic illness. The chapter addresses
adolescents who live with a chronic illness as they
transition from pediatric to adult medical care, sib-
lings of children with a chronic illness and their spe-
cific needs, and the needs of young caregivers who
provide care for a parent who has a chronic illness.
The chapter presents two case studies: one a family
who has an adolescent with diabetes and one a family
helping its elderly parent and grandparent manage
living with Parkinson’s disease.
Chapter 10: Families in Palliative and End-of-
Life Care is written by Rose Steele, PhD, RN, Pro-
fessor, York University School of Nursing, Toronto,
Ontario, Canada; Carole A. Robinson, PhD, RN,
Associate Professor, University of British Columbia,
Okanagan School of Nursing, British Columbia,
Canada; and Kimberley A. Widger, PhD, RN, As-
sistant Professor, Lawrence S. Bloomberg Faculty of
Nursing, University of Toronto, Ontario, Canada.
This chapter details the key components to consider
in providing palliative and end-of-life care, as well
as families’ most important concerns and needs when
a family member experiences a life-threatening ill-
ness or is dying. It also presents some concrete
strategies to assist nurses in providing optimal pal-
liative and end-of-life care to all family members.
More specifically, the chapter begins with a brief
definition of palliative and end-of-life care, in-
cluding its focus on improving quality of life for
patients and their families. The chapter then out-
lines principles of palliative care and ways to
apply these principles across all settings and regard-
less of whether death results from chronic illness or
a sudden or traumatic event. Two evidence-based,
palliative care and end-of-life case studies con-
clude the chapter.
Chapter 11: Trauma and Family Nursing is
written by Deborah Padgett Coehlo, PhD, C-PNP,
PMHS, CFLE, Developmental and Behavioral Spe-
cialist, Juniper Ridge Clinic, Bend, Oregon, and ad-
junct faculty at Oregon State University. Dr. Coehlo
has been on the editorial team for two editions of
this text. Using theory-guided practice, this chapter
helps nurses develop knowledge about trauma and
family nurses’ key role in the field of trauma. It em-
phasizes the importance of prevention, early treat-
ment, encouraging family resilience, and helping the
family to make meaning out of negative events. This
chapter also stresses an understanding of secondary
trauma, or the negative effects of witnessing trauma
of others. This discussion is particularly salient for
family nurses, because they are some of the most
likely professionals to encounter traumatized victims
in their everyday practice. Two case studies explicate
family nursing when working with families who are
experiencing the effects of traumatic life events.
UNIT 3
Nursing Care of Families in Clinical
Areas
Chapter 12: Family Nursing With Childbearing
Families is written by Linda Veltri, PhD, RN, Clin-
ical Assistant Professor, Oregon Health Science
University, School of Nursing, Ashland, Oregon,
Campus; Karline Wilson-Mitchell, RM, CNM, RN,
MSN, Assistant Professor, Midwifery Education
Program, Ryerson University, Ontario, Canada; and
Kathleen Bell, MSN, CNM, AHN-BC, Clinical
Associate, School of Nursing, Linfield College,
Portland, Oregon. The focus of childbearing family
nurses is family relationships and the health of all
family members. Therefore, nurses involved with
childbearing families use family concepts and theo-
ries as part of developing the plan of nursing care. A
review of literature provides current evidence about
the processes families experience when deciding on
and adapting to childbearing, including theory and
clinical application of nursing care for families plan-
ning pregnancy, experiencing pregnancy, adopting
and fostering children, struggling with infertility,
and coping with illness during the early postpartum
period. This chapter starts by presenting theoretical
perspectives that guide nursing practice with child-
bearing families. It continues with an exploration of
Preface xv
3921_FM_i-xxiv 06/06/14 2:56 PM Page xv
family nursing with childbearing families before
conception through the postpartum period. The
chapter covers specific issues childbearing families
may experience, including postpartum depression,
attachment concerns, and postpartum illness. Nurs-
ing interventions are integrated throughout this
chapter to demonstrate how family nurses can help
childbearing families prevent complications, in-
crease coping strategies, and adapt to their expanded
family structure, development, and function. The
chapter concludes with two case studies that explore
family adaptations to stressors and changing roles
related to childbearing.
Chapter 13: Family Child Health Nursing
is written by Deborah Padgett Coehlo. A major
task of families is to nurture children to become
healthy, responsible, and creative adults who can
develop meaningful relationships across the life
span. Families experience the stress of normative
transitions with the addition of each child and
situational transitions when children are ill. Knowl-
edge of the family life cycle, child development,
and illness trajectory provides a foundation for
offering anticipatory guidance and coaching at
stressful times. Family life influences the promo-
tion of health and the experience of illness in chil-
dren, and is influenced by children’s health and
illness. This chapter provides a brief history of
family-centered care of children and then presents
foundational concepts that will guide nursing prac-
tice with families with children. The chapter goes
on to describe nursing care of well children and
families with an emphasis on health promotion,
nursing care of children and families in acute care
settings, nursing care of children with chronic ill-
ness and their families, and nursing care of children
and their families during end of life. Case studies
illustrate the application of family-centered care
across settings.
Chapter 14: Family Nursing in Acute Care
Adult Settings is written by Vivian Tong, PhD, RN,
and Joanna Rowe Kaakinen, PhD, RN, both profes-
sors of nursing at Linfield College-Good Samaritan
School of Nursing, Portland, Oregon. Hospitaliza-
tion for an acute illness, injury, or exacerbation of a
chronic illness is stressful for patients and their fam-
ilies. The ill adult enters the hospital usually in a
physiological crisis, and the family most often accom-
panies the ill or injured family members into the hos-
pital; both the patient and the family are usually in
an emotional crisis. Families with members who are
acutely or critically ill are seen in adult medical-
surgical units, intensive care or cardiac care units, or
emergency departments. This chapter covers the
major stressors that families experience during hos-
pitalization of adult family members, the transfer of
patients from one unit to another, visiting policies,
family waiting rooms, home discharge, family pres-
ence during cardiopulmonary resuscitation, with-
drawal or withholding of life-sustaining therapies,
end-of-life family care in the hospital, and organ do-
nation. The content emphasizes family needs during
these critical events. This chapter also presents a fam-
ily case study in a medical-surgical setting that
demonstrates how the Family Assessment and Inter-
vention Model and the FS3I can be used as the frame-
work to assess and intervene with a particular family.
Chapter 15: Family Health in Mid and Later
Life is co-authored by Diana L. White, PhD,
Senior Research Associate in Human Development
and Family Studies, Institute of Aging at Portland
State University, Portland, Oregon, and Jeannette
O’Brien, PhD, RN, Assistant Professor at Linfield
College–Good Samaritan School of Nursing, Port-
land, Oregon. The chapter employs the life course
perspective, family systems models, and develop-
mental theories as the guiding organizational struc-
ture. The chapter presents evidence-based practice
on working with adults in mid and later life, includ-
ing a review of living choices for older adults with
chronic illness, and the importance of peer rela-
tionships and intergenerational relationships to
quality of life. This chapter includes extensive
information about family caregiving for and by
older adults, including spouses, adult children, and
grandparents. Two case studies conclude the chap-
ter. One family case study illustrates the integrated
generational challenges facing older adults today.
The second case study addresses care of an elderly
family member who never married and has no chil-
dren. This case presents options for caregiving and
the complexity of living healthy.
Chapter 16: Family Mental Health Nursing
has been completely revised for this edition. It is
written by Laura Rodgers, PhD, RN, PMHNP,
Professor of Nursing at Linfield College–Good
Samaritan School of Nursing, Portland, Oregon.
Dr. Rodgers brings to her writing both her schol-
arly perspective and clinical practice as a psychiatric
nurse practitioner in private practice. The chapter
begins with a brief demographic overview of the
pervasiveness of mental health conditions (MHCs)
xvi Preface
3921_FM_i-xxiv 06/06/14 2:56 PM Page xvi
in both Canada and the United States. The remain-
der of the chapter focuses on the impact a specific
MHC can have on the individual with the MHC,
individual family members, and the family as a unit.
Although the chapter does not go into specific di-
agnostic criteria for various conditions, it does offer
nursing interventions to assist families. One case
study explores the impact and treatment of sub-
stance abuse. The second presents how a family
nurse can work with a family to improve the health
of all family members when one family member
lives with paranoid schizophrenia.
Chapter 17: Families and Community/Public
Health Nursing is co-authored by a North Amer-
ican writing team: Linda L. Eddy, PhD, RN,
CPNP, Associate Professor, Washington State
University Intercollegiate College of Nursing,
Vancouver, Washington; Annette Bailey, PhD,
RN, Assistant Professor, Daphne Cockwell School
of Nursing, Ryerson University, Toronto, Ontario,
Canada; and Dawn Doutrich, PhD, RN, CNS,
Associate Professor, Washington State University
Intercollegiate College of Nursing, Vancouver,
Washington. Healthy communities are comprised
of healthy families. Community/public health
nurses understand the effects that communities can
have on individuals and families, and recognize that
a community’s health is reflected in the health ex-
periences of its members and their families. This
chapter offers a description of community health
nursing promoting the health of families in com-
munities. It begins with a definition of community
health nursing, and follows with a discussion of
concepts and principles that guide the work of
these nurses, the roles they enact in working with
families and communities, and the various settings
where they work. This discussion is organized
around a visual representation of community health
nursing. The chapter ends with discussion of cur-
rent trends in community/public health nursing
and a family case study that demonstrates working
with families in the community.
Preface xvii
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3921_FM_i-xxiv 06/06/14 2:56 PM Page xviii
xix
c o n t r i b u t o r s
ANNETTE BAILEY, PhD, RN
Assistant Professor, Daphne Cockwell School of
Nursing
Ryerson University
Toronto, Ontario, Canada
KATHLEEN BELL, RN, MSN, CNM,
AHN-BC
Clinical Associate, School of Nursing
Linfield College
Portland, Oregon
PERRI J. BOMAR, PhD, RN
Professor Emeritus, School of Nursing
University of North Carolina at Wilmington
Wilmington, North Carolina
PETER D. BRANDON, PhD
Professor, Department of Sciology
The University at Albany – SUNY
Albany, New York
LYNNE, M. CASPER, PhD
Professor of Sociology and Director, Southern
California Population Research Center
University of Southern California
Los Angeles, California
DEBORAH PADGETT COEHLO, PhD,
C-PNP, PMHS, CFLE
Developmental and Behavioral Specialist
Juniper Ridge Clinic
Bend, Oregon
Adjunct Professor
Oregon State University
Bend, Oregon
ISOLDE DAISKI, RN, BScN, EdD
Associate Professor, School of Nursing
York University
Toronto, Ontario, Canada
SHARON A. DENHAM, DSN, RN
Professor and Houston J. and Florence A. Doswell
Endowed Chair in Nursing for Teaching Excellence,
College of Nursing
Texas Woman’s University, Dallas
Dallas, Texas
GWENETH HARTRICK DOANE, PhD, RN
Professor, School of Nursing
University of Victoria
Victoria, British Columbia, Canada
DAWN DOUTRICH, PhD, RN, CNS
Associate Professor, Intercollegiate College of
Nursing
Washington State University
Vancouver, Washington
LINDA L. EDDY, PhD, RN, CPNP
Associate Professor, Intercollegiate College of Nursing
Washington State University
Vancouver, Washington
SANDRA M. FLORIAN, MA
PhD Candidate, Department of Sociology
University of Southern California
Los Angeles, California
DALE HALSEY LEA, MPH, RN, CGC, FAAN
Adjunct Lecturer, School of Nursing
University of Maine
Cumberland Foreside, Maine
SHIRLEY MAY HARMON HANSON, RN, PhD,
PMHNP/ARNP, FAAN, CFLE, LMFT
Professor Emeritus, School of Nursing
Oregon Health and Science University
Portland, Oregon
Adjunct Faculty, College of Nursing
Washington State University
Spokane, Washington
3921_FM_i-xxiv 06/06/14 2:56 PM Page xix
JOANNA ROWE KAAKINEN, PhD, RN
Professor, School of Nursing
Linfield College
Portland, Oregon
YEOUN SOO KIM-GODWIN,
PhD, MPH, RN
Professor, School of Nursing
University of North Carolina, Wilmington
Wilmington, North Carolina
JEANNETTE O’BRIEN, PhD, RN
Assistant Professor, School of Nursing
Linfield College
Portland, Oregon
CAROLE A. ROBINSON, PhD, RN
Associate Professor, School of Nursing
University of British Columbia, Okanagan
Kelowna, British Columbia, Canada
LAURA RODGERS, PhD, PMHNP
Professor, School of Nursing
Linfield College
Portland, Oregon
CASEY R. SHILLAM, PhD, RN-BC
Director, School of Nursing
Western Washington University
Bellingham, Washington
ROSE STEELE, PhD, RN
Professor, School of Nursing, Faculty of Health
York University
Toronto, Ontario, Canada
AARON TABACCO, BSN, RN
Doctoral Candidate, School of Nursing
Oregon Health and Science University
Portland, Oregon
VIVIAN TONG, PhD, RN
Professor, School of Nursing
Linfield College
Portland, Oregon
COLLEEN VARCOE, PhD, RN
Associate Professor, School of Nursing
University of British Columbia
Vancouver, British Columbia, Canada
LINDA VELTRI, PhD, RN
Clinical Assistant Professor, School of Nursing
Oregon Health Science University, Ashland
Ashland, Oregon
DIANA L. WHITE, PhD
Senior Research Associate, Institute on Aging
Portland State University
Portland, Oregon
KIMBERLEY A. WIDGER, PhD, RN
Assistant Professor, Lawrence S. Bloomberg School of
Nursing
University of Toronto
Toronto, Ontario, Canada
KARLINE WILSON-MITCHELL, RM, CNM,
RN, MSN
Assistant Professor, Midwifery Education Program
Ryerson University
Toronto, Ontario, Canada
xx Contributors
3921_FM_i-xxiv 06/06/14 2:56 PM Page xx
xxi
r e v i e w e r s
ELLEN J. ARGUST, MS, RN
Lecturer
State University of New York
New Paltz, New York
AMANDA J. BARTON, DNP, FNP, RN
Assistant Professor
Hope College
Holland, Michigan
LAURA J. BLANK, RN, MSN, CNE
Assistant Clinical Professor
Northern Arizona University
Flagstaff, Arizona
BARBARA S. BROOME, PhD, RN
Associate Dean and Chair
University of South Alabama
Mobile, Alabama
SHARON L. CARLSON, PhD, RN
Professor
Otterbein College
Westerville, Ohio
BARBARA CHEYNEY, BSN, MS, RN-BC
Adjunct Faculty
Seattle Pacific University
Seattle, Washington
MICHELE D’ARCY-EVANS, PhD, CNM
Professor
Lewis-Clark State College
Lewiston, Idaho
MARGARET C. DELANEY, MS, CPNP, RN
Faculty Instructor
Benedictine University
Lisle, Illinois
SANDRA K. EGGENBERGER, PhD, RN
Professor
Minnesota State University Mankato
Mankato, Minnesota
ANNELIA EPIE, RN, MN(c)
Public Health Nurse
City of Toronto Public Health
Toronto, Ontario, Canada
BRIAN FONNESBECK, RN
Associate Professor
Lewis Clark State College
Lewiston, Idaho
MARY ANN GLENDON, PhD, MSN, RN
Associate Professor
Southern Connecticut State University
New Haven, Connecticut
RACHEL E. GRANT, RN, MN
Research Associate
University of Toronto
Toronto, Ontario, Canada
SHEILA GROSSMAN, PhD, FNP-BC
Professor and FNP Specialty Track Director
Fairfield University
Fairfield, Connecticut
AAFREEN HASSAN, RN
Registered Nurse
Scarborough Hospital
Toronto, Ontario, Canada
ANNA JAJIC, MN-NP, MSc, RPN, BSsN
Faculty and Nurse Practitioner
Douglas College
New West Minster, British Columbia, Canada
MOLLY JOHNSON, MSN, CPNP, RN
Nursing Instructor
Ohio University
Ironton, Ohio
KATHY KOLLOWA, MSN, RN
Nurse Educator
Platt College
Aurora, Colorado
3921_FM_i-xxiv 06/06/14 2:56 PM Page xxi
KEN KUSTIAK, RN, RPN, BScN, MHS(c)
Nursing Instructor
Grant MacEwan College
Ponoka, Alberta, Canada
MAUREEN LEEN, PhD, RN, CNE
Professor
Madonna University
Livonia, Michigan
KAREN ELIZABETH LEIF, BA, RN, MA
Nurse Educator
Globe University, Minnesota School of Business
Richfield, Minnesota
BARBARA MCCLASKEY, PhD, MN, RNC,
ARNP
Professor
Pittsburg State University
Pittsburg, Kansas
VICKI A. MOSS, DNSc, RN
Associate Professor
University of Wisconsin, Oshkosh
Oshkosh, Wisconsin
VERNA C. PANGMAN, MEd, MN, RN
Senior Instructor
University of Manitoba
Winnipeg, Manitoba, Canada
CINDY PARSONS, DNP, PMHNP-BC,
FAANP
Assistant Professor
University of Tampa
Tampa, Florida
SUSAN PERKINS, MSN, RN
Lead Faculty and Instructor
Washington State University
Spokane, Washington
CINDY PETERNELJ-TAYLOR, RN, BScN,
MSc, PhD(c)
Professor
University of Saskatchewan
Saskatoon, Saskatchewan, Canada
THELMA PHILLIPS, MSN, RN, NRP
Instructor
University of Detroit, Mercy
Detroit, Michigan
TREVA V. REED, BScN, MSN, PhD
Professor
Canadore College/Nipissing University
North Bay, Ontario, Canada
NANCY ROSS, PhD, ARNP
Professor
University of Tampa
Tampa, Florida
CARMEN A. STOKES, PhD(c), RN, MSN,
FNP-BC, CNE
Assistant Professor
University of Detroit, Mercy
Detroit, Michigan
JILL STRAWN, EdD, APRN
Associate Professor
Southern Connecticut State University
New Haven, Connecticut
SARA STURGIS, MSN, CRNP
Manager, Pediatric Clinical Research
Hershey Medical Center
Hershey, Pennsylvania
BARBARA THOMPSON, RN, BScN, MScN
Professor
Sault College
Sault Ste. Marie, Ontario, Canada
SHARON E. THOMPSON, MSN, RN
Assistant Clinical Professor
Northern Arizona University
Flagstaff, Arizona
MARYANN TROIANO, MSN, RN, APN
Assistant Professor and Family Nurse Practitioner
Monmouth University
West Long Branch, New Jersey
LOIS TSCHETTER, EdD, RN, IBCLC
Associate Professor
South Dakota State University
Brookings, South Dakota
WENDY M. WHEELER, RN, MN
Instructor
Red Deer College
Red Deer, Alberta, Canada
MARIA WHEELOCK, MSN, NP
Clinical Assistant Professor and Nurse Practitioner
State University of New York, Upstate Medical
University
Syracuse, New York
xxii Reviewers
3921_FM_i-xxiv 06/06/14 2:56 PM Page xxii
xxiii
t a b l e o f c o n t e n t s
U N I T 1 Foundations in Family Health Care Nursing 1
chapter 1 Family Health Care Nursing 3
An Introduction
Joanna Rowe Kaakinen, PhD, RN
Shirley May Harmon Hanson, RN, PhD, PMHNP/ARNP, FAAN, CFLE, LMFT
chapter 2 Family Demography 33
Continuity and Change in North American Families
Lynne M. Casper, PhD
Sandra M. Florian, MA, PhD Candidate
Peter D. Brandon, PhD
chapter 3 Theoretical Foundations for the Nursing of Families 67
Joanna Rowe Kaakinen, PhD, RN
Shirley May Harmon Hanson, RN, PhD, PMHNP/ARNP, FAAN, CFLE, LMFT
chapter 4 Family Nursing Assessment and Intervention 105
Joanna Rowe Kaakinen, PhD, RN
Aaron Tabacco, BSN, RN, Doctoral Candidate
chapter 5 Family Social Policy and Health Disparities 137
Isolde Daiski, RN, BScN, EdD
Casey R. Shillam, PhD, RN-BC
Lynne M. Casper, PhD
Sandra M. Florian, MA, PhD Candidate
U N I T 2 Families Across the Health Continuum 165
chapter 6 Relational Nursing and Family Nursing in Canada 167
Colleen Varcoe, PhD, RN
Gweneth Hartrick Doane, PhD, RN
chapter 7 Genomics and Family Nursing Across the Life Span 187
Dale Halsey Lea, MPH, RN, CGC, FAAN
chapter 8 Family Health Promotion 205
Yeoun Soo Kim- Godwin, PhD, MPH, RN
Perri J. Bomar, PhD, RN
chapter 9 Families Living With Chronic Illness 237
Joanna Rowe Kaakinen, PhD, RN
Sharon A. Denham, DSN, RN
3921_FM_i-xxiv 06/06/14 2:56 PM Page xxiii
chapter 10 Families in Palliative and End-of-Life Care 277
Rose Steele, PhD, RN
Carole A. Robinson, PhD, RN
Kimberley A. Widger, PhD, RN
chapter 11 Trauma and Family Nursing 321
Deborah Padgett Coehlo, PhD, C-PNP, PMHS, CFLE
U N I T 3 Nursing Care of Families in Clinical Areas 351
chapter 12 Family Nursing With Childbearing Families 353
Linda Veltri, PhD, RN
Karline Wilson-Mitchell, RM, CNM, RN, MSN
Kathleen Bell, RN, MSN, CNM, AHN-BC
chapter 13 Family Child Health Nursing 387
Deborah Padgett Coehlo, PhD, C-PNP, PMHS, CFLE
chapter 14 Family Nursing in Acute Care Adult Settings 433
Vivian Tong, PhD, RN
Joanna Rowe Kaakinen, PhD, RN
chapter 15 Family Health in Mid and Later Life 477
Diana L. White, PhD
Jeannette O’Brien, PhD, RN
chapter 16 Family Mental Health Nursing 521
Laura Rodgers, PhD, PMHNP
chapter 17 Families and Community/Public Health Nursing 559
Linda L. Eddy, PhD, RN, CPNP
Annette Bailey, PhD, RN
Dawn Doutrich, PhD, RN, CNS
APPENDICES
appendix A Family Systems Stressor-Strength Inventory (FS3I) 583
appendix B The Friedman Family Assessment Model (Short Form) 599
INDEX 603
xxiv Table of Contents
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U N I T
1
Foundations in
Family Health
Care Nursing
3921_Ch01_001-032 05/06/14 10:54 AM Page 1
3921_Ch01_001-032 05/06/14 10:54 AM Page 2
3
Family Health Care Nursing
An Introduction
c h a p t e r 1
Joanna Rowe Kaakinen, PhD, RN
Shirley May Harmon Hanson, PhD, PMHNP/ARNP, FAAN, CFLE, LMFT
C r i t i c a l C o n c e p t s
■ Family health care nursing is an art and a science that has evolved as a way of thinking about and working with families.
■ Family nursing is a scientific discipline based in theory.
■ Health and illness are family events.
■ The term family is defined in many ways, but the most salient definition is, The family is who the members say it is.
■ An individual’s health (on the wellness-to-illness continuum) affects the entire family’s functioning, and in turn, the
family’s ability to function affects each individual member’s health.
■ Family health care nursing knowledge and skills are important for nurses who practice in generalized and in specialized
settings.
■ The structure, function, and processes of families have changed, but the family as a unit of analysis and service
continues to survive over time.
■ Nurses should intervene in ways that promote health and wellness, as well as prevent illness risks, treat disease
conditions, and manage rehabilitative care needs.
■ Knowledge about each family’s structure, function, and process informs the nurse in how to optimize nursing care in
families and provide individualized nursing care, tailored to the uniqueness of every family system.
Family health care nursing is an art and a science,
a philosophy and a way of interacting with families
about health care. It has evolved since the early
1980s as a way of thinking about, and working with,
families when a member experiences a health prob-
lem. This philosophy and practice incorporates the
following assumptions:
■ Health and illness affect all members of
families.
■ Health and illness are family events.
■ Families influence the process and outcome
of health care.
All health care practices, attitudes, beliefs, be-
haviors, and decisions are made within the context
of larger family and societal systems.
Families vary in structure, function, and processes.
The structure, functions, and processes of the family
influence and are influenced by individual family
3921_Ch01_001-032 05/06/14 10:54 AM Page 3
member’s health status and the overall health status
of the whole family. Families even vary within given
cultures because every family has its own unique
culture. People who come from the same family of
origin create different families over time. Nurses
need to be knowledgeable in the theories of families,
as well as the structure, function, and processes of
families to assist them in achieving or maintaining a
state of health.
2010a). In addition, ANA’s Nursing: Scope and Stan-
dards of Practice mandates that nurses provide family
care (ANA, 2010b). “Nurses have an ethical and
moral obligation to involve families in their health-
care practices” (Wright & Leahey, 2013, p. 1).
The overall goal of this book is to enhance
nurses’ knowledge and skills in the theory, practice,
research, and social policy surrounding nursing care
of families. This chapter provides a broad overview
of family health care nursing. It begins with an
exploration of the definitions of family and family
health care nursing, and the concept of healthy
families. This chapter goes on to describe four
approaches to working with families: family as con-
text, family as client, family as system, and family as
a component of society. The chapter presents the
varied, but ever-changing, family structures and
explores family functions relative to reproduction,
socialization, affective function, economic issues,
and health care. Finally, the chapter discusses family
processes, so that nurses know how their practice
makes a difference when families experience stress
because of the illness of individual family members.
THE FAMILY AND FAMILY HEALTH
Three foundational components of family nursing
are: (1) determining how family is defined, (2) un-
derstanding the concepts of family health, and (3)
knowing the current evidence about the elements
of a healthy family.
What Is the Family?
There is no universally agreed-upon definition of
family. Now more than ever, the traditional defini-
tion of family is being challenged, with Canadian
recognition of same-sex marriages and with several
states in the United States giving same-sex families
the freedom to marry. Family is a word that con-
jures up different images for each individual and
group, and the word has evolved in its meaning over
time. Definitions differ by discipline, for example:
■ Legal: relationships through blood ties,
adoption, guardianship, or marriage
■ Biological: genetic biological networks among
and between people
■ Sociological: groups of people living together
with or without legal or biological ties
■ Psychological: groups with strong emotional ties
4 Foundations in Family Health Care Nursing
When families are considered the unit of care—as
opposed to individuals—nurses have much broader
perspectives for approaching health care needs of
both individual family members and the family unit
as a whole (Kaakinen, Hanson, & Denham, 2010).
Understanding families enables nurses to assess the
family health status, ascertain the effects of the family
on individual family members’ health status, predict
the influence of alterations in the health status of the
family system, and work with members as they plan
and implement action plans customized for improved
health for each individual family member and the
family as a whole.
Recent advances in health care, such as changing
health care policies and health care economics,
ever-changing technology, shorter hospital stays,
and health care moving from the hospital to the
community/family home, are prompting changes
from an individual person paradigm to the nursing
care of families as a whole. This paradigm shift is
affecting the development of family theory, prac-
tice, research, social policy, and education, and it is
critical for nurses to be knowledgeable about and at
the forefront of this shift. The centrality of family-
centered care in health care delivery is emphasized
by the American Nurses Association (ANA) in its
publication, Nursing’s Social Policy Statement (ANA,
3921_Ch01_001-032 05/06/14 10:54 AM Page 4
Historically, early family social science theorists
(Burgess & Locke, 1953, pp. 7–8) adopted the
following traditional definition in their writing:
The family is a group of persons united by ties of mar-
riage, blood, or adoption, constituting a single house-
hold; interacting and communicating with each other
in their respective social roles of husband and wife,
mother and father, son and daughter, brother and sis-
ter; and creating and maintaining a common culture.
Currently, the U.S. Census Bureau defines family
as two or more people living together who are re-
lated by birth, marriage, or adoption (U.S. Census
Bureau, 2011). This traditional definition continues
to be the basis for the implementation of many social
programs and policies. Yet, this definition excludes
many diverse groups who consider themselves to be
families and who perform family functions, such as
economic, reproductive, and affective functions, as
well as child socialization. Depending on the social
norms, all of the following examples could be viewed
as “family”: married or remarried couples with bio-
logical or adoptive children, cohabitating same-sex
couples (gay and lesbian families), single-parent fam-
ilies with children, kinship care families such as two
sisters living together, or grandparents raising
grandchildren without the parents.
persons in health care planning with the patient’s
permission.
What Is Family Health?
The World Health Organization (2008) defined
health to include a person’s characteristics, behav-
iors, and physical, social, and economic environ-
ment. This definition applies to individuals and to
families. Anderson and Tomlinson (1992) sug-
gested that the analysis of family health must
include, simultaneously, health and illness, the in-
dividual and the collective. They underscored evi-
dence that the stress of a family member’s serious
illness exerts a powerful influence on family func-
tion and health, and that familial behavioral pat-
terns or reactions to illness influence the individual
family members. The term family health is often
used interchangeably with the terms family func-
tioning, healthy families, or familial health. To some,
family health is the composite of individual family
members’ physical health, because it is impossible
to make a single statement about the family’s phys-
ical health as a single entity.
The definition of family health adopted in this
textbook and that applies from the previous edition
(Kaakinen et al., 2010) is as follows: Family health
is a dynamic, changing state of well-being, which
includes the biological, psychological, spiritual, sociologi-
cal, and culture factors of individual members and the
whole family system. This definition and approach
combines all aspects of life for individual members,
as well as for the whole family. An individual’s
health (on the wellness-to-illness continuum)
affects the entire family’s functioning, and in turn,
the family’s ability to function affects each individ-
ual member’s health. Assessment of family health
involves simultaneous data collection on individual
family members and the whole family system
(Craft-Rosenberg & Pehler, 2011).
What Is a Healthy Family?
While it is possible to define family health, it is
more difficult to describe a healthy family. Char-
acteristics used to describe healthy families or fam-
ily strengths have varied throughout time in the
literature. Krysan, Moore, and Zill (1990)
described “healthy families” as “successful families”
in a report prepared by the U.S. Department of
Health and Human Services. They identified some
Family Health Care Nursing: An Introduction 5
The definition of family adopted by this text-
book and that applies from the previous edition
(Kaakinen et al., 2010) is as follows: Family refers to
two or more individuals who depend on one another for
emotional, physical, and economic support. The members
of the family are self-defined. Nurses who work with
families should ask clients who they consider to be
members of their family and should include those
3921_Ch01_001-032 05/06/14 10:54 AM Page 5
of the ideas put forward by many family scholars
over time. For example, Otto (1963) was the first
scholar to develop psychosocial criteria for assess-
ing family strengths, and he emphasized the need
to focus on positive family attributes instead of the
pathological approach that accentuated family
problems and weaknesses. Pratt (1976) introduced
the idea of the “energized family” as one whose
structure encourages and supports individuals to
develop their capacities for full functioning and
independent action, thus contributing to family
health. Curran (1985) investigated not only family
stressors but also traits of healthy families, incor-
porating moral and task focus into traditional family
functioning. These traits are listed in Box 1-1.
For more than three decades, Driver, Tabares,
Shapiro, Nahm, and Gottman (2011) have studied
the interactional patterns of marital success or fail-
ure. The success of a marriage does not depend on
the presence or the amount of conflict. Success of
a marriage depends primarily on how the couple
handles conflict. The presence of four characteris-
tics of couple interaction was found to predict
divorce with 94% accuracy (Carrere, Buehlman,
Coan, Gottman, & Ruckstuhl, 2000):
1. Criticism: These are personal attacks that
consist of negative comments, to and about
each other, that occur over time and that
erode the relationship.
2. Contempt: This is the most corrosive of the
four characteristics between the couple.
Contempt includes comments that convey
disgust and disrespect.
3. Defensiveness: Each partner blames the other
in an attempt to deflect a verbal attack.
4. Stonewalling: One or both of the partners
refuse to interact or engage in interaction,
both verbally and nonverbally.
In contrast, conflict is addressed in three ways in
positive, healthy marriages. Validators talk their
problems out, expressing emotions and opinions,
and are skilled at reaching a compromise. Volatiles
are two partners who view each other as equals, as
they engage in loud, passionate, explosive interac-
tions that are balanced by a caring, loving relation-
ship. Their conflicts do not include the four
negative characteristics identified earlier. The last
type of couple is the Avoiders. Avoiders simply agree
not to engage in conflicts, thus minimizing the cor-
rosive effects of negative conflict resolution. The
crucial point in all three styles of healthy conflict is
that both partners engage in a similar style. Thus
how conflict is used and resolved in the parental or
couple dyad relationship suggests the health and
longevity of the family unit.
The described positive interactions occur far
more often than the negative interactions in hap-
pily married couples. These healthy family couples
find ways to work out their differences and prob-
lems, are willing to yield to each other during their
arguments, and make purposeful attempts to repair
their relationship.
Olson and Gorall (2005) conducted a longitudi-
nal study on families, in which they merged the
concepts of marital and family dynamics in the
Circumplex Model of Marital and Family Systems.
They found that the ability of the family to demon-
strate flexibility is related to its ability to alter fam-
ily leadership roles, relationships, and rules,
including control, discipline, and role sharing.
Functional, healthy families have the ability to
change these factors in response to situations. Dys-
functional families, or unhealthy families, have less
ability to adapt and flex in response to changes. See
Figures 1-1 and 1-2, which depict the differences
in functional and dysfunctional families in the Cir-
cumplex Model. Balanced families will function
more adequately across the family life cycle and
6 Foundations in Family Health Care Nursing
BOX 1-1
Traits of a Healthy Family
■ Communicates and listens
■ Fosters table time and conversation
■ Affirms and supports each member
■ Teaches respect for others
■ Develops a sense of trust
■ Has a sense of play and humor
■ Has a balance of interaction among members
■ Shares leisure time
■ Exhibits a sense of shared responsibility
■ Teaches a sense of right and wrong
■ Abounds in rituals and traditions
■ Shares a religious core
■ Respects the privacy of each member
■ Values service to others
■ Admits to problems and seeks help
Source: From Kaakinen, J. R., Hanson, S. M. H., & Denham, S.
(2010). Family health care nursing: An introduction. In
J. W. Kaakinen, V. Gedaly-Duff, D. P. Coehlo, & S. M. H. Hanson
(Eds.), Family health care nursing: Theory, practice and re-
search (4th ed.). Philadelphia, PA: F. A. Davis, with permission.
3921_Ch01_001-032 05/06/14 10:54 AM Page 6
Family Health Care Nursing: An Introduction 7
BALANCED FAMILY
Rigid,
Inflexible
One person is
in charge and is
highly controlling.
Negotiation is
limited.
Rules do not
change.
Roles are strictly
enforced.
Leadership is
democratic.
Roles are stable;
there is some role
sharing.
Rules are enforced
with few changes.
Leadership is
equalitarian with
a democratic
approach to
decision making.
Negotiation is open
and actively
includes children.
Roles are shared
and are age
appropriate.
There are frequent
changes in
leadership and roles.
Rules are flexible
and readily adjusted.
Leadership is
erratic and limited.
Decisions are
impulsive.
Roles are unclear
and shift from
person to person.
Flexible
Family
Very
Flexible
Chaotic,
Overly
Flexible
Somewhat
Inflexible
FIGURE 1-1 Family flexibility continuum.
BALANCED FAMILY
Cohesion
Disconnected
There is extreme
emotional
separateness.
There is little family
involvement.
Family does not
turn to each other
for support.
Members have
some time apart
from family but also
spend some time
together.
Joint support and
decision making
take place.
Strike equilibrium
with moderate
separateness and
togetherness.
Family members
can be both
independent and
connected to the
family.
Decision making
is shared.
There is emotional
closeness and
loyalty.
More time is spent
together than alone.
Family members
have separate and
shared couple
friends.
There is extreme
emotional
connection, and
loyalty is demanded.
There is little private
space. Family
members are highly
dependent on each
other and reactive
to each other.
Connected
Very
Connected
Overly
Connected
Somewhat
Connected
FIGURE 1-2 Family cohesion continuum.
3921_Ch01_001-032 05/06/14 10:54 AM Page 7
tend to be healthier families. The family commu-
nication skills enable balance and help families to
adjust and adapt to situations. Couples and families
modify their levels of flexibility and cohesion to
adapt to stressors, thus promoting family health.
FAMILY HEALTH CARE NURSING
The specialty area of family health care nursing has
been evolving since the early 1980s. Some question
how family health care nursing is distinct from
other specialties that involve families, such as
maternal-child health nursing, community health
nursing, and mental health nursing. The definition
and framework for family health care nursing adopted
by this textbook and that applies from the previous
edition (Kaakinen et al., 2010) is as follows:
The process of providing for the health care needs
of families that are within the scope of nursing
practice. This nursing care can be aimed toward the
family as context, the family as a whole, the family
as a system, or the family as a component of society.
Family nursing takes into consideration all four
approaches to viewing families. At the same time,
it cuts across the individual, family, and community
for the purpose of promoting, maintaining, and
restoring the health of families. This framework
illustrates the intersecting concepts of the individual,
the family, nursing, and society (Fig. 1-3).
Another way to view family nursing practice is
conceptually, as a confluence of theories and strate-
gies from nursing, family therapy, and family social
science as depicted in Figure 1-4. Over time, family
nursing continues to incorporate ideas from family
therapy and family social science into the practice
of family nursing. See Chapter 3 for discussion
about how theories from family social science, fam-
ily therapy, and nursing converge to inform the
nursing of families.
Several family scholars have written about lev-
els of family health care nursing practice. For ex-
ample, Wright and Leahey (2013) differentiated
among several levels of knowledge and skills that
family nurses need for a generalist versus special-
ist practice, and they defined the role of higher
education for the two different levels of practice.
They propose that nurses receive a generalist
or basic level of knowledge and skills in family
nursing during their undergraduate work, and ad-
vanced specialization in family nursing or family
therapy at the graduate level. They recognize that
advanced specialists in family nursing have a
narrower focus than generalists. They purport,
however, that family assessment is an important
skill for all nurses practicing with families. Bomar
(2004) further delineated five levels of family
health care nursing practice using Benner’s levels
of practice: expert, proficient, competent, ad-
vanced beginner, and novice. See Table 1-1,
which describes how the two levels of generalist
and advanced practice have been delineated fur-
ther with levels of education and types of clients
(Benner, 2001).
8 Foundations in Family Health Care Nursing
FIGURE 1-3 Family nursing conceptual framework.
Nursing
models
Family therapy
theory
Family social
science theory
Family
nursing
FIGURE 1-4 Family nursing practice.
3921_Ch01_001-032 05/06/14 10:54 AM Page 8
NATURE OF INTERVENTIONS
IN FAMILY NURSING
The following 10 interventions family nurses use
provide structure to working with families regard-
less of the theoretical underpinning of the nursing
approach. These are enduring ideas that support the
practice of family nursing (Gilliss, Roberts, Highley,
& Martinson, 1989; Kaakinen et al., 2010):
1. Family care is concerned with the experience
of the family over time. It considers both the
history and the future of the family group.
2. Family nursing considers the community
and cultural context of the group. The fam-
ily is encouraged to receive from, and give
to, community resources.
3. Family nursing considers the relationships
between and among family members, and
recognizes that, in some instances, all indi-
vidual members and the family group will
not achieve maximum health simultaneously.
4. Family nursing is directed at families whose
members are both healthy and ill regardless
of the severity of the illness in the family
member.
5. Family nursing is often offered in settings
where individuals have physiological or
psychological problems. Together with
competency in treatment of individual
health problems, family nurses must recog-
nize the reciprocity between individual
family members’ health and collective
health within the family.
6. The family system is influenced by any
change in its members. Therefore, when
caring for individuals in health and illness,
the nurse must elect whether to attend to
the family. Individual health and collective
health are intertwined and will be influenced
by any nursing care given.
7. Family nursing requires the nurse to ma-
nipulate the environment to increase the
likelihood of family interaction. The physi-
cal absence of family members, however,
does not preclude the nurse from offering
family care.
8. The family nurse recognizes that the person
in a family who is most symptomatic may
change over time; this means that the focus
of the nurse’s attention will also change
over time.
Family Health Care Nursing: An Introduction 9
Table 1-1 Levels of Family Nursing Practice
Level of Practice Generalist/Specialist Education Client
Expert
Proficient
Competent
Advanced beginner
Novice
All levels
Family nursing theory development
Family nursing research
All levels
Beginning family nursing research
Individual in the family context
Interpersonal family nursing
Family unit
Family aggregates
Individual in the family context
Interpersonal family nursing
(family systems nursing)
Family unit
Individual in the family context
Advanced specialist
Advanced specialist
Beginning specialist
Generalist
Generalist
Doctoral degree
Master’s degree with
added experience
Master’s degree
Bachelor’s degree with
added experience
Bachelor’s degree
Source: Bomar, P. J. (Ed.). (2004). Promoting health in families: Applying family research and theory to nursing practice
(3rd ed.). Philadelphia, PA: Saunders/Elsevier, with permission.
3921_Ch01_001-032 05/06/14 10:54 AM Page 9
9. Family nursing focuses on the strengths of
individual family members and the family
group to promote their mutual support and
growth.
10. Family nurses must define with the family
which persons constitute the family and
where they will place their therapeutic
energies.
These are the distinctive intervention statements
specific to family nursing that appear continuously
in the care and study of families in nursing, regard-
less of the theoretical model in use.
APPROACHES TO FAMILY NURSING
Four different approaches to care are inherent in
family nursing: (1) family as the context for indi-
vidual development, (2) family as a client, (3) family
as a system, and (4) family as a component of soci-
ety (Kaakinen et al., 2010). Figure 1-5 illustrates
these approaches to the nursing of families. Each
approach derived its foundations from different
nursing specialties: maternal-child nursing, pri-
mary care nursing, psychiatric/mental health nurs-
ing, and community health nursing, respectively.
All four approaches have legitimate implications
for nursing assessment and intervention. The ap-
proach that nurses use is determined by many fac-
tors, including the health care setting, family
circumstances, and nurse resources. Figure 1-6
shows how a nurse can view all four approaches to
families through just one set of eyes. It is important
to keep all four perspectives in mind when working
with any given family.
Family as Context
The first approach to family nursing care focuses
on the assessment and care of an individual client
in which the family is the context. Alternate labels
for this approach are family centered or family
focused. This is the traditional nursing focus, in
which the individual is foreground and the family
is background. The family serves as context for the
individual as either a resource or a stressor to the
individual’s health and illness. Most existing nurs-
ing theories or models were originally conceptual-
ized using the individual as a focus. This approach
is rooted in the specialty of maternal-child nursing
and underlies the philosophy of many maternity
and pediatric health care settings. A nurse using
this focus might say to an individual client: “Who
in your family will help you with your nightly med-
ication?” “How will you provide for child care
when you have your back surgery?” or “It is won-
derful for you that your wife takes such an interest
in your diabetes and has changed all the food
preparation to fit your dietary needs.”
Family as Client
The second approach to family nursing care cen-
ters on the assessment of all family members. The
family nurse is interested in the way all the family
members are individually affected by the health
event of one family member. In this approach, all
members of the family are in the foreground. The
family is seen as the sum of individual family mem-
bers, and the focus concentrates on each individual.
The nurse assesses and provides health care for
each person in the family. This approach is seen
typically in primary care clinics in the communities
where primary care physicians (PCPs) or nurse
practitioners (NPs) provide care over time to all
individuals in a given family. From this perspective,
a nurse might ask a family member who has just be-
come ill: “How has your diagnosis of juvenile dia-
betes affected the other individuals in your family?”
“Will your nightly need for medication be a prob-
lem for other members of your family?” “Who in
your family is having the most difficult time with
your diagnosis?” or “How are the members of your
family adjusting to your new medication regimen?”
Family as System
The third approach to care views the family as a
system. The focus in this approach is on the family
as a whole as the client; here, the family is viewed
as an interactional system in which the whole is
more than the sum of its parts. In other words, the
interactions between family members become the
target for the nursing interventions. The interven-
tions flow from the assessment of the family as a
whole. The family nursing system approach focuses
on the individual and family simultaneously. The
emphasis is on the interactions between family
members, for example, the direct interactions be-
tween the parental dyad or the indirect interaction
between the parental dyad and the child. The more
children there are in a family, the more complex
these interactions become.
10 Foundations in Family Health Care Nursing
3921_Ch01_001-032 05/06/14 10:54 AM Page 10
This interactional model had its start with the
specialty of psychiatric and mental health nursing.
The systems approach always implies that when
something happens to one part of the system, the
other parts of the system are affected. Therefore, if
one family member becomes ill, it affects all other
members of the family. Examples of questions that
nurses may ask in a systems approach include the fol-
lowing: “What has changed between you and your
spouse since your child was diagnosed with juvenile
Family Health Care Nursing: An Introduction 11
Family as System
Interactional family
Family as Component
of Society
Legal
Financial
EducationFamily
Health
Religion Social
Church
School
Family Home
Bank
Medical Center
Family as Context
Individual as foreground
Family as background
Family as Client
Family as foreground
Individual as background
+ + + +
FIGURE 1-5 Approaches to family nursing.
3921_Ch01_001-032 05/06/14 10:54 AM Page 11
diabetes?” or “How has the diagnosis of juvenile
diabetes affected the ways in which your family is
functioning and getting along with each other?”
Family as Component of Society
The fourth approach to care looks at the family as
a component of society, in which the family is
viewed as one of many institutions in society, sim-
ilar to health, educational, religious, or economic
institutions. The family is a basic or primary unit
of society, and it is a part of the larger system of
society (Fig. 1-7). The family as a whole interacts
with other institutions to receive, exchange, or give
communication and services. Family social scien-
tists first used this approach in their study of fami-
lies in society. Community health nursing has
drawn many of its tenets from this perspective as it
focuses on the interface between families and com-
munity agencies. Questions nurses may ask in this
approach include the following: “What issues has
the family been experiencing since you made the
school aware of your son’s diagnosis of HIV?” or
“Have you considered joining a support group for
families with mothers who have breast cancer?
Other families have found this to be an excellent
resource and a way to reduce stress.”
VARIABLES THAT INFLUENCE
FAMILY NURSING
Family health care nursing has been influenced by
many variables that are derived from both historical
and current events within society and the profession
of nursing. Examples include changing nursing
theory, practice, education, and research; new
knowledge derived from family social sciences and
the health sciences; national and state health care
policies; changing health care behavior and atti-
tudes; and national and international political
events. Chapters 3 and 5 provide detailed discus-
sions of these areas.
Figure 1-8 illustrates how many variables influ-
ence contemporary family health nursing, making
the point that the status of family nursing is
dependent on what is occurring in the wider
society—family as community. A recent example
of this point is that health practices and policy
changes are under way because of the recognition
that current costs of health care are escalating and,
at the same time, greater numbers of people are un-
derinsured or uninsured and have lost access to
health care. The goal of this health care reform is
to make access and treatment available for everyone
at an affordable cost. That will require a major shift
in priorities, funding, and services. A major move-
ment toward health promotion and family care in
the community will greatly affect the evolution of
family nursing.
FAMILY NURSING ROLES
Families are the basic unit of every society, but it is
also true that families are complex, varied, dynamic,
12 Foundations in Family Health Care Nursing
System
Component
Context
Client
FIGURE 1-6 Four views of family through a lens.
Society
Family
Individual
FIGURE 1-7 Family as primary group in society.
3921_Ch01_001-032 05/06/14 10:54 AM Page 12
and adaptive, which is why it is crucial for all nurses
to be knowledgeable about the scientific discipline
of family nursing, and the variety of ways nurses
may interact with families (Kaakinen et al., 2010).
The roles of family health care nurses are evolving
along with the specialty. Figure 1-9 lists the many
roles that nurses can assume with families as the
focus. This figure was constructed from some of
the first family nursing literature that appeared, and
it is a composite of what various scholars believe to
be some of the current roles of nurses. Keep in
mind that the health care setting affects roles that
nurses assume with families.
Health teacher: The family nurse teaches about
family wellness, illness, relations, and parenting, to
name a few topics. The teacher-educator function
is ongoing in all settings in both formal and informal
Family Health Care Nursing: An Introduction 13
Technology-Internet
Megatrends
Economy
Policies
Housing
Education
Media
Health care delivery system
Environmental
Culture
Policy Making/Agendas
United Nations
Families
Health
United States/Canada
Health
Families
Economic
Child Care
Environmental
State and Local Governments
Divorce laws
Health care
Economics
Organizations
National Council of
Family Relations
Children’s Defense Fund
Groves Family Conference
Marriage and Family
Therapists Associations
Religious Organizations
..
…..
…
SOCIETY
Policy Related Theories/
Agendas
Strengths Perspective
Family Stress and Coping
Family Systems
Family Process
Family Structure &
Function
Family Development
Self-Care
Health Promotion
Family Interaction
Related Disciplines
Anthropology
Family Sociology
Family Psychology
Family Therapy
Family Science
Behavioral Sciences
Theology
Social Work
THEORIES
Primary care
(health promotion)
Secondary care
(health protection)
Tertiary care
(recovery/rehabilitation)
Families
Health
Vulnerable to illness
or dysfunction
Acute illness &
recovery
Chronic illness/
rehabilitation
FAMILY HEALTH
NURSING
..
.
.
Nursing Organizations
American Nurses Association
Standards of Nursing
Practice
Social Policy Statement
Agenda for Health Care
Reform
National League of Nursing
Accreditation Standards
American Association of
Colleges of Nurses
Family nursing interest groups
(i.e., ANA Council of
Nurse Researchers and
Western Nursing
Research Society)
National Association of Nurse
Practitioners
International Family Nursing
Biennial Conference
Family Nursing
Theory/Research
Nursing Paradigm
Family Nursing Research
Family transitions
Chronic illness and the
family
Acute illness and the
family
Health Promotion
Single Parents and
Health
Specialties in Nursing
Family nurse practitioner
Maternal child nursing
Family and community
health nursing
Psychiatric mental health
nursing
Home health nursing
Pediatric nursing
.
..
NURSING
.
FIGURE 1-8 Variables that influence contemporary family health care. (From Bomar, P. J. [Ed.]. [2004].
Promoting health in families: Applying family research and theory to nursing practice [3rd ed., p. 17].
Philadelphia, PA: Saunders/Elsevier, with permission.)
3921_Ch01_001-032 05/06/14 10:54 AM Page 13
ways. Examples include teaching new parents how
to care for their infant and giving instructions
about diabetes to a newly diagnosed adolescent boy
and his family members.
Coordinator, collaborator, and liaison: The
family nurse coordinates the care that families re-
ceive, collaborating with the family to plan care.
For example, if a family member has been in a trau-
matic accident, the nurse would be a key person in
helping families to access resources—from inpa-
tient care, outpatient care, home health care, and
social services to rehabilitation. The nurse may
serve as the liaison among these services.
“Deliverer” and supervisor of care and tech-
nical expert: The family nurse either delivers or
supervises the care that families receive in various
settings. To do this, the nurse must be a technical
expert both in terms of knowledge and skill. For
example, the nurse may be the person going into
the family home on a daily basis to consult with the
family and help take care of a child on a respirator.
Family advocate: The family nurse advocates for
families with whom he works; the nurse empowers
family members to speak with their own voice, or the
nurse speaks out for the family. An example is a school
nurse advocating for special education services for a
child with attention-deficit hyperactivity disorder.
Consultant: The family nurse serves as a consultant
to families whenever asked or whenever necessary.
In some instances, she consults with agencies to
facilitate family-centered care. For example, a clini-
cal nurse specialist in a hospital may be asked to as-
sist the family in finding the appropriate long-term
care setting for their sick grandmother. The nurse
comes into the family system by request for a short
period and for a specific purpose.
Counselor: The family nurse plays a therapeutic
role in helping individuals and families solve prob-
lems or change behavior. An example from the
mental health arena is a family that requires help
with coping with a long-term chronic condition,
such as when a family member has been diagnosed
with schizophrenia.
“Case-finder” and epidemiologist: The family
nurse gets involved in case-finding and becomes a
tracker of disease. For example, consider the situation
in which a family member has been recently diag-
nosed with a sexually transmitted disease. The nurse
would engage in sleuthing out the sources of the
transmission and in helping other sexual contacts to
seek treatment. Screening families and subsequent re-
ferral of the family members may be a part of this role.
Environmental specialist: The family nurse con-
sults with families and other health care professionals
to modify the environment. For example, if a man
with paraplegia is about to be discharged from the
hospital to home, the nurse assists the family in mod-
ifying the home environment so that the patient can
move around in a wheelchair and engage in self-care.
Clarify and interpret: The nurse clarifies and in-
terprets data to families in all settings. For example,
if a child in the family has a complex disease, such
as leukemia, the nurse clarifies and interprets in-
formation pertaining to diagnosis, treatment, and
prognosis of the condition to parents and extended
family members.
Surrogate: The family nurse serves as a surrogate
by substituting for another person. For example,
the nurse may stand in temporarily as a loving par-
ent to an adolescent who is giving birth to a child
by herself in the labor and delivery room.
Researcher: The family nurse should identify
practice problems and find the best solution for
dealing with these problems through the process of
scientific investigation. An example might be
14 Foundations in Family Health Care Nursing
Theory
developer
Advocate
Role model
Researcher
Surrogate
Environmental
modifier
Technical expert
(Deliver/supervise care)
Coordinator
collaborator
Liaison
Counselor
Clarifier-interpreter
Case finder
(Epidemiologist)
Case manager
Health education
Consultant
Family
FIGURE 1-9 Family nursing roles.
3921_Ch01_001-032 05/06/14 10:54 AM Page 14
collaborating with a colleague to find a better
intervention for helping families cope with incon-
tinent elders living in the home.
Role model: The family nurse is continually serv-
ing as a role model to other people. A school nurse
who demonstrates the right kind of health in per-
sonal self-care serves as a role model to parents and
children alike.
Case manager: Although case manager is a con-
temporary name for this role, it involves coordina-
tion and collaboration between a family and the
health care system. The case manager has been em-
powered formally to be in charge of a case. For
example, a family nurse working with seniors in the
community may become assigned to be the case
manager for a patient with Alzheimer’s disease.
OBSTACLES TO FAMILY NURSING
PRACTICE
There are several obstacles to practicing family
nursing. A vast amount of literature is available
about families, but there has been little taught
about families in the nursing curricula until
the past three decades. Most practicing nurses have
not had exposure to family theory or concepts dur-
ing their undergraduate education and continue to
practice using the individualist paradigm. Even
though there are several family assessment models
and approaches, families are complex, so no one as-
sessment approach fits all family situations. There
is a paucity of valid and reliable psychometrically
tested family evaluation instruments.
Furthermore, some students and nurses may be-
lieve that the study of family and family nursing is
“common sense,” and therefore does not belong
formally in nursing curricula, either in theory or
practice. Nursing also has strong historical ties with
the medical model, which has traditionally focused
on the individual as client, rather than the family.
At best, families have been viewed in context, and
many times families were considered a nuisance in
health care settings—an obstacle to overcome to
provide care to the individual.
Another obstacle is the fact that the traditional
charting system in health care has been oriented to
the individual. For example, charting by exception
focuses on the physical care of the individual and
does not address the whole family or members of
families. Likewise, the medical and nursing diagnos-
tic systems used in health care are disease centered,
and diseases are focused on individuals and have lim-
ited diagnostic codes that pertain to the family as a
whole. To complicate matters further, most insur-
ance companies require that there be one identified
patient, with a diagnostic code drawn from an indi-
vidual disease perspective. Thus, even if health care
providers are intervening with entire families, com-
panies require providers to choose one person in the
family group as the identified patient and to give that
person a physical or mental diagnosis, even though
the client is the whole family. Although there are
family diagnostic codes that address care with fami-
lies, insurance companies may not pay for care for
those codes, especially if the care is more psycholog-
ical or educational in nature. See Chapter 4 for a
detailed discussion on diagnostic codes.
The established hours during which health care
systems provide services pose another obstacle
to focusing on families. Traditionally, office hours
take place during the day, when family members
cannot accompany other family members. Recently,
some urgent care centers and other outpatient set-
tings have incorporated evening and weekend hours
into their schedules, making it possible for family
members to come in together. But many clinics and
physician offices still operate on traditional Monday
through Friday, 9:00 a.m. to 5:00 p.m. schedules,
thus making it difficult for all family members to at-
tend together. These obstacles to family-focused
nursing practice are slowly changing; nurses should
continue to lobby for changes that are more con-
ducive to caring for the family as a whole.
HISTORICAL PERSPECTIVES
A brief historical outline of the development of the
specialty of family nursing will help nurses under-
stand how nurses have actually always provided
care for the family from several different view-
points. An outline of the history of families in
North America is presented to provide an overview
of the family development up until present time.
History of Family Nursing
Family health nursing has roots in society from pre-
historic times. The historical role of women has been
inextricably interwoven with the family, for it was the
Family Health Care Nursing: An Introduction 15
3921_Ch01_001-032 05/06/14 10:54 AM Page 15
responsibility of women to care for family members
who fell ill and to seek herbs or remedies to treat the
illness. Women have been the primary child care
providers throughout history. In addition, through
“proper” housekeeping, women made efforts to pro-
vide clean and safe environments for the maintenance
of health and wellness for their families (Bomar, 2004;
Ham & Chamings, 1983; Whall, 1993).
During the Nightingale era in the late 1800s, the
development of nursing families became more
explicit. Florence Nightingale influenced both the
establishment of district nursing of the sick and
poor, and the work of “health missionaries”
through “health-at-home” teaching. She believed
that cleanliness in the home could eradicate high
infant mortality and morbidity rates. She encour-
aged family members of the fighting troops to
come into the hospitals during the Crimean War
to take care of their loved ones. Nightingale sup-
ported helping women and children achieve good
health by promoting both nurse midwifery and
home-based health services. In 1876, in a docu-
ment titled “Training Nurses for the Sick Poor,”
Nightingale encouraged nurses to serve in nursing
both sick and healthy families in the home environ-
ment. She gave both home-health nurses and
maternal-child nurses the mandate to carry out
nursing practice with the whole family as the unit
of service (Nightingale, 1979).
In colonial America, women continued the
centuries-old traditions of nurturing and sustaining
the wellness of their families and caring for the ill.
During the industrial revolution of the late 18th
century, family members began to work outside the
home. Immigrants, in particular, were in need of
income, so they went to work for the early hospi-
tals. This was the real beginning of public health
and school nursing. The nurses involved in the
beginning of the labor movement were concerned
with the health of workers, immigrants, and
their families. Concepts of maternal-child and
family care were incorporated into basic curricu-
lums of nursing schools. In fact, maternity nursing,
nurse midwifery, and community nursing histori-
cally focused on the quality of family health.
Margaret Sanger fought for family planning. Mary
Breckenridge formed the famous Frontier Nursing
Service (midwifery) to provide training for nurses
to meet the health needs of mountain families.
A concerted expansion of public health nursing
occurred during the Great Depression to work
with families as a whole. Nevertheless, before and
during World War II, nursing became more
focused on the individual, and care became central-
ized in institutional and hospital settings, where it
remained until recently.
Since the 1950s, at least 19 disciplines have stud-
ied the family and, through research, produced fam-
ily assessment techniques, conceptual frameworks,
theories, and other family material. Recently, this
interdisciplinary work has become known as family
social science. Family social science has greatly in-
fluenced family nursing in the United States, largely
because of the professional interdisciplinary group
called National Council of Family Relations and its
large number of family publications. Many family
nurses have become active in this organization. In
addition, some nurses are now receiving advanced
degrees in family social science departments around
the country.
Nursing theorists started in the 1960s to system-
atize nursing practice. Scholars began to articulate the
philosophy and goals of nursing care. Initially, theo-
rists were concerned only with individuals, but grad-
ually, individuals became viewed as part of a larger
social system. Also in the 1960s, the NP movement
began espousing the family as a primary unit of care
in practice, although the grand theories of nursing
focused primarily on the individual and not families.
The 1980s saw a shift in focus to families as a
unit of care in America and Canada. Small numbers
of people across these countries gathered together
to discuss and share family nursing concepts. Fam-
ily nurses started defining the scope of practice,
family concepts, and how to teach this information
to the next generation of nurses. Family nursing
has both old and new traditions and definitions.
The discipline and science of family nursing is now
beyond youth, more like a young adult, but still
in a state of growing up and maturing. The first na-
tional family nursing conferences were held in the
United States (Portland, Oregon) in 1986–1989.
The International Family Nursing Conferences
(IFNC) began in the late 1980s and has been held
around the world every 2 or 3 years since that time.
The 11th International Family Nursing Confer-
ence was held in June 2013 in Minneapolis, Min-
nesota. The International Family Nursing
Association (IFNA) grew out of IFNC and became
active in 2009–2010. See Table 1-2 for a composite
of historical factors that contributed to the devel-
opment of family health as a focus in nursing.
16 Foundations in Family Health Care Nursing
3921_Ch01_001-032 05/06/14 10:54 AM Page 16
Family Health Care Nursing: An Introduction 17
Table 1-2 Historical Factors Contributing to the Development of Family Health as a Focus in
Nursing
Time Period Events
Pre-Nightingale era
Mid-1800s
Late 1800s
Early 1900s
1960s
1970s
1980s
Revolutionary War “camp followers” were an example of family health focus before Florence Nightingale’s
influence.
Nightingale influences district nurses and health missionaries to maintain clean environment for patients’
homes and families.
Family members provided for soldiers’ needs during Civil War through Ladies Aid Societies and Women’s
Central Association for Relief.
Industrial Revolution and immigration influence focus of public health nursing on prevention of illness,
health education, and care of the sick for both families and communities.
Lillian Wald establishes Henry Street Visiting Nurse Service (1893).
Focus on family during childbearing by maternal-child nurses and midwives.
School of nursing established in New York City (1903).
First White House Conference on Children occurs (1909).
Red Cross Town and Country Nursing Service was founded (1912).
Margaret Sanger opens first birth control clinic (1916).
Family planning and quality care become available for families.
Mary Breckinridge forms Frontier Nursing Service (1925).
Nurses are assigned to families.
Red Cross Public Health Nursing Service meets rural health needs after stock market crash (1929).
Federal Emergency Relief Act passed (1933).
Social Security Act passed (1935).
Psychiatry and mental health disciplines begin family therapy focus (late 1930s).
Concept of family as a unit of care is introduced into basic nursing curriculum.
National League for Nursing (NLN) requires emphasis on families and communities in nursing curriculum.
Family-centered approach in maternal-child nursing and midwifery programs is begun.
Nurse-practitioner movement, programs to provide primary care to children begin (1965).
Shift from public health nursing to community health nursing occurs.
Family studies and research produce family theories.
Changing health care system focuses on maintaining health and returning emphasis to family health.
Development and refinement of nursing conceptual models that consider the family as a unit of analysis
or care occur (e.g., King, Newman, Orem, Rogers, and Roy).
Many specialties focus on the family (e.g., hospice, oncology, geriatrics, school health, psychiatry, mental
health, occupational health, and home health).
Master’s and doctoral programs focus on the family (e.g., family health nursing, community health
nursing, psychiatry, mental health, and family counseling and therapy).
ANA Standards of Nursing Practice are implemented (1973).
Surgeon General’s Report focuses on healthy people, health promotion, and disease prevention (1979).
ANA Social Policy Statement (1980).
White House Conference on Families.
Greater emphasis is put on health from very young to very old.
Increasing emphasis is placed on obesity, stress, chemical dependency, and parenting skills.
Graduate level specialization begins, with emphasis on primary care outside of acute care settings, health
teaching, and client self-care.
(continued)
3921_Ch01_001-032 05/06/14 10:54 AM Page 17
18 Foundations in Family Health Care Nursing
Table 1-2 Historical Factors Contributing to the Development of Family Health as a Focus in
Nursing—cont’d
Time Period Events
1990s
2000s
Use of wellness and nursing models in providing care increases.
Promoting Health/Preventing Disease: Objective for the Nation (1980) is released by U.S. Department
of Health and Human Services.
Family science develops as a discipline.
Family nursing research increases.
National Center for Nursing Research is founded, with a Health Promotion and Prevention Research section.
First International Nursing Conference occurs in Calgary, Canada (1988).
Healthy People 2000: National Health Promotion and Disease Prevention Objective (1990) is released
by U.S. Department of Health and Human Services.
Nursing’s Agenda for Health Care Reform is developed (ANA, 1991).
Family leave legislation is passed (1991).
Journal of Family Nursing is created (1995).
Nursing’s Agenda for the Future is written (ANA, 2002).
Healthy People 2010 and Healthy People 2020 are released from U.S. Department of Health and
Human Services.
The quality and quantity of family nursing research continue to increase, especially in the international
sector.
Family-related research is clearly a goal of the National Institute of Nursing Research Themes for the
Future (NINR, 2003).
World Health Organization document Health for All in the 21st Century calls for support of families.
The National Council on Family Relations prepared the NCFR Presidential Report 2001: Preparing
Families for the Future.
International Family Nursing Conferences start meeting every 2 years instead of every 3 years.
Adapted from Bomar, P. J. (Ed.). (2004). Promoting health in families: Applying family research and theory to
nursing practice (3rd ed.). Philadelphia, PA: Saunders/Elsevier.
History of Families
A brief macro-analytical history of families is im-
portant to an understanding of family nursing. The
past helps to make the present realities of family
life more understandable, because the influence of
the past is evident in the present. This historical
approach provides a means of conceptualizing fam-
ily over time and within all of society. History helps
to dispel preferences for family forms that are only
personally familiar and broaden nurses’ views of the
world of families.
Prehistoric Family Life
Archaeologists and anthropologists have found
evidence of prehistoric family life, existing before
the time of written historical sources. These fam-
ily forms varied from present-day forms, but the
functions of the family have been assumed to have
remained somewhat constant over time. Families
were then and are now a part of the larger commu-
nity and constitute the basic unit of society.
It is postulated that the family structure, process,
and function were a response to everyday needs in
prehistoric times, just as they are in modern times.
As communities grew, families and communities
became more institutionalized and homogeneous
as civilization progressed. Family culture was that
aspect of life derived from membership in a partic-
ular group and shared by others. Family culture
was composed of values and attitudes that allowed
early families to behave in a predictable fashion.
Man and woman dyads are the oldest and most
tenacious unit in history. Biologically, human chil-
dren need care and protection longer than other
animals’ offspring. These needs led humans to
form long-term relationships. Economic pairing
was not always the same as reproductive pairing,
3921_Ch01_001-032 05/06/14 10:54 AM Page 18
but it was a by-product of reproductive pairing.
Moreover, a variety of skills were required for liv-
ing, and no single person possessed all skills; there-
fore, male and female roles began to differ and
become defined. Early in history, children were
part of the economic unit. As small groups of con-
jugal families formed communities, the complexity
of the social order increased.
European History
Many Americans are of European ancestry and stem
from the family structure that was present there.
Social organizations called families emphasized
consanguineous (genetic) bonds. The tendency to-
ward authority was concentrated in a few individuals
at the top of the hierarchical structure (kings, lords,
fathers). Men were the heads of families.
Property of family transferred through the male
line. Women left home to join their husbands’
families. Mothers did not establish strong bonds
with their daughters because the daughters even-
tually left their homes of origin to join their hus-
bands’ families of origin. Women and children
were property to be transferred. Marriage was a
contract between families, not individuals. Ex-
tended patriarchal family characteristics prevailed
until the advent of industrialism.
Industrialization
Great stability existed within family systems until
the Industrial Revolution. The revolution first ap-
peared in England around 1750 and spread to
Western Europe and North America. Some believe
that the nuclear family idea started with the Indus-
trial Revolution. Extended families had always been
the norm until families left farms and moved into
the cities, or until men left their families in order
to work in the factories. Some women stayed at
home, maintaining the house and caring for the
children, while other women and children took up
labor in the city factories.
When factories of the Industrial Revolution
started to be built, people began moving about. The
state had begun to provide services that families pre-
viously had performed for their members. Informal
contractual arrangements between public and state
power and nuclear families took place, in which the
state gave fathers the power and authority over their
families in exchange for male individuals giving the
state their loyalty and service. Women were not
expected to love husbands but to obey them.
Society today is still living with bequests of pa-
triarchal family life. Women are still struggling to
get out from under the rules and expectations of
the state and of men. The women’s movement and
the National Organization for Women (NOW) are
two of the forces that have improved the level of
equality of women in modern society. A lot more
work needs to be done on the issues of equality for
all Americans, including gender differences.
In recent years, men have also begun identifying
the bondage they experience. They cannot meet all
of the needs of families and feel inadequate for fail-
ing to do so. This is especially true of men who can-
not access the resources of money, occupation, and
occupational status through education. A men’s
movement is afoot that is promoting male causes,
although this movement is not as dynamic as it may
be in the future. One of the organizations support-
ing this work is the National Congress for Men.
North American Families
North American society and families were molded
from the beginning by economic logic rather than
consanguineous logic. America does not have the
history of Europe’s preindustrial age. English pa-
triarchy was not transplanted in its pure form to
America. Both women and men had to labor in the
New World. This gave women new power. Also,
the United States had an ethic of achieved status
rather than status inherited through familial lines.
Children were also experiencing a changing sta-
tus in American families. Originally, they were part
of the economic unit and worked on farms. Then
with the great immigration of the early 1900s, the
expectation shifted to parents creating a better
world for their children than they themselves had.
To do this, children had to become more educated
to deal with the developing society. Each generation
of children has generally obtained more education
and income than their parents; they left the family
farms and moved to distant cities. As a result of this
change, parents lost assurance that their children
would take care of them during their old age.
In addition, the functions of families were
changing greatly. The traditional roles that families
played were being displaced by the growing num-
bers and kinds of social institutions. Families began
increasingly surrendering to public agencies many
of the socialization functions they previously per-
formed, such as child education, health care, and
child care.
Family Health Care Nursing: An Introduction 19
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Families Today
Today, families cannot be separated from the larger
system of which they are a part, nor can they be sep-
arated from their historical past. Some people argue
that families are in terrible condition, like a rudder-
less ship in the dark. Other people hail the changes
that continue to occur in families, and approve the
diversity and options that address modern needs.
Idealizing past family arrangements and decrying
change has become commonplace in the media. Just
as some families of both the past and present engage
in behaviors that are destructive to individuals and
other social institutions, there are families of the
past and present that provide healthy environments.
The structure, function, and processes of families
have changed, but the family will continue to sur-
vive and thrive. It is, in fact, the most tenacious unit
in society (Kaakinen et al., 2010).
FAMILY STRUCTURE, FUNCTION,
AND PROCESS
Knowledge about family structure, functions, and
processes is essential for understanding the com-
plex family interactions that affect health, illness,
and well-being (Kaakinen et al., 2010). Knowl-
edge emerging from the study of family structure,
function, and process suggests concepts and a
framework that nurses can use to provide effective
assessment and intervention with families. Many
internal and external family variables affect indi-
vidual family members and the family as a whole.
Internal family variables include unique individual
characteristics, communication, and interactions,
whereas external family variables include location
of family household, social policy, and economic
trends. Family members generally have compli-
cated responses to all of these factors. Although
some external factors may not be easily modifi-
able, nurses can assist family members to manage
change, conflict, and care needs. For instance, a
sudden downturn in the economy could result in
the family breadwinner becoming unemployed.
Although nurses are unable to alter this situation
directly, understanding the implications on the
family situation provides a basis for planning more
effective interventions that may include financial
support programs for families. Nurses can assist
members with coping skills, communication pat-
terns, location of needed resources, effective use
of information, or creation of family rituals or
routines (Kaakinen et al., 2010).
Nurses who understand the concepts of family
structure, function, and process can use this knowl-
edge to educate, counsel, and implement changes
that enable families to cope with illness, family cri-
sis, chronic health conditions, and mental illness.
Nurses prepared to work with families can assist
them with needed life transitions (Kaakinen et al.,
2010). For example, when a family member expe-
riences a chronic condition such as diabetes, family
roles, routines, and power hierarchies may be chal-
lenged. Nurses must be prepared to address the
complex and holistic family problems resulting
from illness, as well as to care for the individual’s
medical needs.
Family Structure
Family structure is the ordered set of relationships
within the family, and between the family and other
social systems (Denham, 2005). There are many
tools available for nurses to use in conducting
assessments of family structure. The most funda-
mental tools are family genograms and ecomaps,
which will be introduced later in this chapter.
These tools are not new in nursing, but their pop-
ularity among nurses and other providers is grow-
ing due to the clearly perceived value of the
knowledge they generate. Genograms and ecomaps
are beginning to make their way out of more ob-
scure settings such as specialty genetics clinics and
into mainstream home health, public health, and
even acute care settings (Svarvardoittir, 2008).
In terms of family nursing assessment and inter-
vention, it is logical to begin with the “who” of
families before moving to the “how” or “why.” In
determining the family structure, the nurse needs
to identify the following:
■ The individuals who comprise the family
■ The relationships between them
■ The interactions between the family members
■ The interactions with other social systems
Family patterns of organization tend to be rela-
tively stable over time, but they are modified gradu-
ally throughout the family life cycle and often change
radically when divorce, separation, or death occurs.
In today’s information age and global society, sev-
eral ideas about the “best family” coexist simultane-
ously. Different family types have their strengths and
20 Foundations in Family Health Care Nursing
3921_Ch01_001-032 05/06/14 10:54 AM Page 20
limitations, which directly or indirectly affect indi-
viduals and family health. Many families still adhere
to more customary forms and patterns, but many
of today’s families fall into categories more clearly
labeled nontraditional (Table 1-3). Nurses will con-
front families structured differently from their own
families of origin and will encounter family types
that conflict with personal value systems. For nurses
to work effectively with families, they must maintain
open and inquiring minds.
Families in the past were more homogeneous
than they are today. Whereas the past norm in
predominately Caucasian families was a two-
parent family (traditional nuclear family) living to-
gether with their biological children, many other
family forms are acknowledged and recognized
today. It is important to note that the average per-
son born today will experience many family forms
during his or her lifetime. Figure 1-10 depicts the
many familial forms that the average person can
live through today. Nurses are not only experienc-
ing this proliferation of variation in their own per-
sonal lives but also with the patients with whom
they work in health care settings (Kaakinen &
Birenbaum, 2012).
Understanding family structure enables nurses
assisting families to identify effective coping
strategies for daily life disturbances, health care
crises, wellness promotion, and disease preven-
tion (Denham, 2005). In addition, nurses are cen-
tral in advocating and developing social policies
relevant to family health care needs. For example,
taking political action to increase the availability
of appropriate care for children could reduce the
financial and emotional burden of many working
and single-parent families when faced with pro-
viding care for sick children. Similarly, caregiving
responsibilities and health care costs for acutely
and chronically ill family members place increas-
ing demands on family members. Nurses well
informed about different family structures can
Family Health Care Nursing: An Introduction 21
Family of
origin
Single-
parent
family
Stepfamily Cohabi-
tation
Commuter
marriage
AdulthoodChildhood
Developmental process
Single-
parent
family
Cohabi-
tation
Stepfamily
Widow/
widower
Married/agingfamily
Spouse
biological/stepparent
Partner/parentC
us
to
di
al
pa
re
nt
S
po
us
e/
pa
re
nt
Pa
rtn
er
Li
ve
s
in
Li
ve
s
in
Lives in
Single
Married
FIGURE 1-10 An individual’s potential family life experiences.
Married couple, no children
Husband, wife, children (may or
may not be legally married)
Two postdivorce families with
children as members of both
Nuclear family plus blood relatives
Husband, wife, and children of
previous relationships
One parent and child(ren)
Group of men, women, and children
Unmarried man and woman sharing
a household
Same-gender couple
One person in a household
Table 1-3 Variations of Family and Household
Structures
Family Type Composition
Nuclear dyad
Nuclear
Binuclear
Extended
Blended
Single parent
Commune
Cohabitation
(domestic partners)
Homosexual
Single person (adult)
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identify specific needs of unique families, provide
appropriate clinical care to enhance family re-
silience, and act as change agents to enact social
policies that reduce family burdens.
Family Functions
A functional perspective has to do with the ways
families serve their members. One way to describe
the functional aspect of family is to see the unit
as made up of intimate, interactive, and interde-
pendent persons who share some values, goals,
resources, responsibilities, decisions, and commit-
ment over time (Steinmetz, Clavan, & Stein, 1990).
Family function relates to the larger purposes or
roles of families in society at large. It is important
to be clear that there is a distinction between the
concepts of family function (the prescribed social
and cultural obligations and roles of family in soci-
ety) and family functioning (the processes of family
life). Family functioning has been described as “the
individual and cooperative processes used by devel-
oping persons as to dynamically engage one an-
other and their diverse environments over the life
course” (Denham, 2003a, p. 277). Family function
includes the ways a family reproduces offspring, in-
teracts to socialize its young, cooperates to meet
economic needs, and relates to the larger society.
Nurses should ask about specific characteristics that
factor into achieving family or societal goals, or
both. Families’ functional processes such as social-
ization, reproduction, economics, and health care
provision are areas nurses can readily assess and
address during health care encounters. Nursing
interventions can enhance the family’s protective
health function when teaching and counseling is
tailored to explicit learning needs. Family cultural
context and individual health literacy needs are
closely related to functional needs of families.
Nurses become therapeutic agents as they assist
families to identify social supports and locate com-
munity resources during times of family transitions
and health crisis. Five specific family functions are
worth deeper investigation here: reproductive,
socialization, affective, economic, and health care.
Reproductive Functions of the Family
The survival of a society is linked to patterns of re-
production. Sexuality serves the purposes of pleas-
ure and reproduction, but associated values differ
from one society to another. Traditionally, the
family has been organized around the biological
function of reproduction. Reproduction was
viewed as a major concern for thousands of years
when populating the earth was continually threat-
ened by famine, disease, war, and other life uncer-
tainties. Norms about sexual intercourse affect the
fertility rate. Fertility rate is “the average number
of children that would be born per woman if all
women lived to the end of their childbearing years
and bore children according to a given fertility rate
at each age” (World Factbook, 2013). In general,
global fertility rates are in decline, with the most
pronounced decline being in industrialized coun-
tries, especially Western Europe (World Factbook,
2013). Global concerns about overpopulation and
environmental threats, as well as personal views of
morality and financial well-being, have been rea-
sons for limiting numbers of family births.
Since the 1980s, the reproductive function has
become increasingly separated from the family
(Kaakinen et al., 2010). As mores and norms
change over time, it is not deemed “unacceptable”
in many industrialized countries for birth to occur
outside of marriage. Abstinence, various forms of
contraception, tubal ligation, vasectomy, family
planning, artificial insemination, and abortion have
various degrees of social acceptance as means to
control reproduction. Many aspects of reproduc-
tion continue to be the subject of social and ethical
controversy. Nurses working with families find
themselves at the forefront of practical issues
related to providing care in this complex context.
The ethical dilemmas surrounding abortion,
for example, seem compounded by technological
advances that affect reproduction and problems
of infertility. Reproductive technologies are guided
by few legal, ethical, or moral guidelines. Artificial
insemination by husband or donor, in vitro fertil-
ization, surrogate mothers, and artificial embry-
onization, in which a woman other than the woman
who will give birth to and raise the child donates
an egg for fertilization, create financial and moral
dilemmas. Although assistive reproductive tech-
nologies can provide a biological link to the child,
some families are choosing to adopt children. Many
are wrangling over the issues implicit in cross-racial
and cross-cultural adoptions. Reproductive tech-
nologies and adoption are being considered by
all family types to add children to the family unit.
Religious, legal, moral, economic, and technologi-
cal challenges will continue to cause debates in the
22 Foundations in Family Health Care Nursing
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years ahead about family control over reproduc-
tion, such as gender selection of child.
Socialization Functions of the Family
A major function for families is to raise and social-
ize their children to fit into society. Families have
great variability in the ways they address the phys-
ical and emotional needs, moral values, and eco-
nomic needs of children, and these patterns are
influenced specifically by the role of parenting and
somewhat by the larger society (Grusec, 2011).
Children are born into families without knowledge
of the values, language, norms, morals, communi-
cation, or roles of the society in which they live. A
major function of the family continues to be to so-
cialize them about family life and ground them in
the societal identity of which they are a part. The
function of the family relative to socialization in-
cludes protection, mutual reciprocity or interde-
pendence between family members, control,
guided learning, and group participation, and all
these functions are assumed to be operative in all
cultures (Grusec, 2011).
Although the family is not the only institution
of society that participates in socialization of chil-
dren, it is generally viewed as having primary re-
sponsibility for this function. When children fail to
meet societal standards, it is common to blame this
on family deficits and parental inadequacies; how-
ever, it is important to keep in mind that the issues
are more complex than simple finger pointing.
Today, patterns of socialization require appro-
priate developmental care that fosters dependence
and leads to independence (Denham, 2005). Social-
ization is the primary way children acquire the so-
cial and psychological skills needed to take their
place in the adult world. Parents combine social
support and social control as they equip children
to meet future life tasks. Parental figures interact
in multiple roles such as friends, lovers, child care
providers, housekeepers, financial providers, recre-
ation specialists, and counselors. Children growing
up within families learn the values and norms of
their parents and extended families.
Another role of families in the socialization
process is to guide children through various rites
of passage. Rites of passage are ceremonies that an-
nounce a change in status in the ways members are
viewed. Examples include events such as a baptism,
communion, circumcision, puberty ritual, gradua-
tion, wedding, and death. These occasions signal
to others changes in role relationships and new ex-
pectations. Understandings about families’ unique
rites of passage can assist nurses working with
diverse health care needs.
Affective Functions of the Family
Affective function has to do with the ways family
members relate to one another and those outside
the immediate family boundaries. Healthy families
are able to maintain a consistent level of involve-
ment with one another, yet at the same time, not
become too involved in each other’s lives (Peterson
& Green, 2009). The healthiest families have em-
pathetic interaction where family members care
deeply about each other’s feeling and activities, and
are emotionally invested in each other. Families
with a strong affective function are the most effec-
tive type of families (Peterson & Green, 2009). All
families have boundaries that help to buffer stresses
and pressure of systems outside the family on its
members. Healthy families protect their bound-
aries, but at the same time, give members room to
negotiate their independence. Achieving this bal-
ance is often difficult in our fast-paced culture. And
it is particularly difficult in families with adoles-
cents (Peterson & Green, 2009). Emotional in-
volvement is a key to successful family functioning.
Researchers have identified several characteristics
of strong families. Among these are expressions of
appreciation, spending time together, strong com-
mitment to the family, good communication, and
positive conflict resolution (Peterson & Green,
2009). When family members feel that they are
supported and encouraged and that their personal
interests are valued, family interaction becomes
more effective.
Families provide a sense of belonging and iden-
tity to their members. This identity often proves to
be vitally important throughout the entire life cycle.
Within the confines of families, members learn de-
pendent roles that later serve to launch them into
independent ones. Families serve as a place to learn
about intimate relationships and establish the foun-
dation for future personal interactions. Families
provide the initial experience of self-awareness,
which includes a sense of knowing one’s own gen-
der, ethnicity, race, religion, and personal charac-
teristics. Families help members become acquainted
with who they are and experience themselves in
relationships with others. Families provide the sub-
stance for self-identity, as well as a foundation for
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other-identity. Within the confines of families, in-
dividual members learn about love, care, nurtu-
rance, dependence, and support of the dying.
Resilience implies an ability to rebound from
stress and crisis, the capacity to be optimistic, solve
problems, be resourceful, and develop caring sup-
port systems. Although unique traits alter potential
for emotional and psychological health, individuals
exposed to resilient family environments tend to
have greater potential to achieve normative devel-
opmental patterns and positive sibling and parental
relationships (Denham, 2005).
Research on parent-child interactions needs
to consider the quantity and quality of time spent
together, the kinds of activities engaged in, and pat-
terns of interaction to understand member feelings
toward each other. More needs to be known about
relationships with nonresidential parents as well as
families characterized by polyamory, families in
which there is more than one loving sexual relation-
ship at the same time with the consent and knowl-
edge of all partners (Pallotta-Chiarolli, 2006).
Variables such as the quality of couples’ relation-
ships, the ways families’ conflicts are handled,
whether abuse or violence has previously occurred
in the households or members’ lives, frequency of
children’s contact with nonresidential parents,
shared custody arrangements, and emotional rela-
tionships between parents and children appear to be
important predictors of family affective functions.
Affective functions can best be understood by
gathering information from all of the various mem-
bers involved within a household; lack of access to
all points of view within families should not prevent
nurses from gaining knowledge from those to
whom they have access. It is quite reasonable to in-
quire about the perceptions and experiences of
some individuals through key family informants,
but nurses must always remember that more certain
knowledge should come from the specific individu-
als themselves, particularly as family members are
known to have diverse viewpoints on issues that af-
fect health and family life. Shared or discrepant
views among family members have an important
influence on the overall functioning of families’
management of illness (Knafl, Breitmayer, Gallo, &
Zoeller, 1996 Knafl, Deatrick, & Gallo, 2008).
Economic Functions of the Family
Families have an important function in keeping
both local and national economies viable. Economic
conditions significantly affect families. When
economies become turbulent so become families’
structures, functions, and processes. People make
decisions about when to enter the labor force, when
to marry, when to have children, and when to retire
or come out of retirement based on economic fac-
tors (Bianchi, Casper, & King, 2005). For a detailed
discussion on family and economics, see Chapter 2.
Family income provides a substantial part of fam-
ily economics, but an equally important aspect has to
do with economic interactions and consumerism re-
lated to household consumption and finance. Money
management, housing decisions, consumer spending,
insurance choices, retirement planning, and savings
are some of the issues that affect family capacity
to care for the economic needs of its members
(Lamanna & Reidmann, 2011. These values and
skills are passed down to children within the family
structure. Financial vulnerability and bankruptcy
have increased for middle-class families (Denham,
2005). The ability of the family to earn a sufficient
income and to manage its finances wisely is a critical
factor related to economic well-being.
In order to meet their own economic needs and
maintain family life and health, family members
take upon themselves a number of contributory
roles for obtaining and utilizing the wages. Family
nurses should explore the types of resources avail-
able or lacking as families engage in providing
health care functions to their members.
Health Care Functions of the Family
Family members often serve as the primary health
care providers to their families. Individuals regu-
larly seek services from a variety of health care pro-
fessionals, but it is within the family that health
instructions are followed or ignored. Family mem-
bers tend to be the primary caregivers and sources
of support for individuals during health and illness.
Families influence well-being, prevention, illness
care, maintenance care associated with chronic ill-
ness, and rehabilitative care. Family members often
care for one another’s health conditions from the
cradle to the grave. Families can become particu-
larly vulnerable when they encounter health
threats, and family-focused nurses are in a position
where they can provide education, counseling, and
assistance with locating resources. Family-focused
care implies that when a single individual is the tar-
get of care, the entire family is still viewed as the
unit of care (Denham, 2003a).
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Health care functions of the family include many
aspects of family life. Family members have differ-
ent ideas about health and illness, and often these
ideas are not discussed within families until prob-
lems arise. Availability and cost of health care in-
surance is a concern for many families, but many
families lack clarity about what is and is not covered
until they encounter a problem. Lifestyle behav-
iors, such as healthy diet, regular exercise, and al-
cohol and tobacco use, are areas that family
members may not associate with health and illness
outcomes. Risk reduction, health maintenance, re-
habilitation, and caregiving are areas where families
often need information and assistance. Family
members spend far more time taking care of health
issues of family members than professionals do.
Family Processes
Family process is the ongoing interaction between
family members through which they accomplish
their instrumental and expressive tasks (Denham,
2005). Family process indicators describe the inter-
actions between members of a family, including
their relationships, communication patterns, time
spent together, and satisfaction with family life
(World Family Map, 2013). In part, family process
makes every family unique within its own particular
culture. Families with similar structures and func-
tions may interact differently. Family process, at
least in the short term, appears to have a greater ef-
fect on the family’s health status than family struc-
ture and function, and in turn, processes within
families are more affected by alterations in health
status. Family process certainly appears to have the
greatest implications for nursing actions. For ex-
ample, for the chronically ill, an important deter-
minant for successful rehabilitation is the ability to
assume one’s familial roles. For rehabilitation
to occur, family members have to communicate
effectively, make decisions about atypical situa-
tions, and use a variety of coping strategies. The
usual familial power structure may be threatened
or need to change to address unique individual
needs. Ultimately, the success or failure of the
adaptation processes will affect individual and
family well-being.
Alterations in family processes most likely occur
when the family faces a transition brought about by
developmental changes, adding or subtracting family
members, an illness or accident, or other potential
crisis situations, such as natural disasters, wars, or
personal crises. The family’s current modes of op-
eration may become ineffective, and members are
confronted with learning new ways of coping with
change. For example, when coping with the stress
of a chronic illness, families experience alterations
in role performance and in power. When individ-
uals are unable to perform usual roles, other mem-
bers are expected to assume them. A shift in family
roles may result in the loss of individual power.
During times of change, family nurses can assist
family members to communicate, make decisions,
identify ways to cope with multiple stressors, re-
duce role strain, and locate needed resources.
Family communication patterns, member inter-
actions, and interaction with social networks are sev-
eral areas related to family processes that nurses
need to assess systematically. Nursing interventions
that promote resiliency in family processes vary with
the degree of strain faced by the family. Families
have complex needs related to adaptation, goal at-
tainment, integration, pattern, and tension manage-
ment. When family processes are ineffective or
disrupted, the families and their members may be at
risk for problems pertinent to health outcomes, and
the family itself could be in danger of disintegrating.
Following is a discussion of a few family processes
that nurses can influence through their relationships
with families in caregiving situations. The family
processes covered here include family coping, family
roles, family communication, family decision mak-
ing, and family rituals and routines.
Family Coping
Every family has its own repertoire of coping
strategies, which may or may not be adequate in
times of stress, such as when a family member ex-
periences an altered health event such as the diag-
nosis of diabetes, a stroke, or a fractured leg in a
biking accident. Coping consists of “constantly
changing cognitive and behavioral efforts to man-
age specific external and/or internal demands that
are appraised as taxing or exceeding the resources
of the person” (Lazarus & Folkman, 1984, p. 141).
Families with support can withstand and rebound
from difficult stressors or crises (Walsh, 2011b),
which is referred to as family resilience. “Family re-
silience is the successful coping of family members
under adversity that enables them to flourish with
warmth, support, and cohesion” (Black & Lobo,
2008, p. 33).
Family Health Care Nursing: An Introduction 25
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Not all families have the same ability to cope be-
cause of multiple reasons. There is no universal list
of key effective factors that contribute to family re-
siliency, but a review of research and literature by
Black and Lobo (2008) found the following simi-
larities across studies for those families that cope
well: a positive outlook, spirituality, family member
accord, flexibility, communication, financial man-
agement, time together, mutual recreational inter-
ests, routines and rituals, and social support (Black
& Lobo, 2008). According to Walsh (2011b) some
key processes in family resiliency include belief sys-
tem, organizational patterns, and family communi-
cation. The family’s belief system involves making
meaning of adversity, maintaining a positive out-
look, and being able to transcend adversity through
a spiritual/faith system (Walsh, 2011b). The fami-
lies’ organization patterns, which speak to their
flexibility, connectedness, and social and economic
resources, help the family maintain resilience.
Finally, families who communicate with clarity,
allow open emotional expression, and have a col-
laborative problem-solving approach facilitate fam-
ily resiliency (Walsh, 2011b).
Nurses have the ability to support families in
times of stress and crisis through empowering
processes that work well and are familiar to the
family. Using a strengths-based approach, family
nurses help families to adjust and adapt to stressors
(Black & Lobo, 2008; Walsh, 2011c). Nurses can
help families in establishing priorities and respond-
ing to everyday needs when a health event occurs
that threatens family stability. For example, when
an unexpected death in the family occurs, family
members are called on to make multiple decisions.
At the same time, they may not be able to remem-
ber phone numbers, think of whom to call in what
order, decide who should pick up the kids, deter-
mine which funeral home to use, or decide how or
what to tell children or aging parents. Helping
families to work through steps and set priorities
during this situation is an important aspect of fam-
ily nursing.
Even families who function at optimal levels
may experience difficulties when stressful events
pile up. Even families that cope well may still feel
stressed (Black & Lobo, 2008). Today’s families
encounter many challenges that leave them vulner-
able to a myriad of stressors. Vulnerability can re-
sult from poverty, illness, abuse, and violence.
Coping capacities are enhanced whenever families
demonstrate resilience or the capacity to survive in
the midst of struggle, adversity, and long-term con-
flict. Families who recover from crisis tend to be
more cohesive, value unique member attributes,
support one another without criticism, and focus
on strengths (Black & Lobo, 2008).
Family Roles
Understanding family roles is crucial in family
nursing as it is one area in which nurses can help
families to adapt, negotiate, give up expectations,
or find additional resources to help decrease family
stress during times when a family member is ill.
Within the family, regardless of structure, each
family position has a number of attached roles, and
each role is accompanied by expectations. After a
review of the family literature, Nye (1976) identi-
fied eight roles associated with the position of
spouse/partner:
■ Provider
■ Housekeeper
■ Child care
■ Socialization
■ Sexual
■ Therapeutic
■ Recreational
■ Kinship
With the rates of divorce and cohabitation in
North America, traditional roles such as provider
and child care role are stressed and unfold differ-
ently. In addition, other roles are added relative to
relationship, such as father who lives apart from
children, stepparent, and/or half-sibling.
Traditionally, the provider role has been as-
signed to husbands, whereas wives assumed the
housekeeper, child care, and other caregiving roles.
With societal changes and variations in family
structure, however, the traditional enactment of
these roles is not viable for some families anymore
(Gaunt, 2013). In two-parent heterosexual families,
the roles are still primarily organized by gender,
with men as breadwinners and women as primary
caregivers (Scott & Braun, 2009). Other family
roles form based on generation or location in the
family (Haddock, Zimmerman, & Lyness, 2005),
such as, for example, middle child, mother, father,
stepsister, niece, and grandfather. Attitudes have
changed somewhat in regard to rigid gender role
enactment (who does what), but the research shows
that, in reality, little change has occurred, and most
26 Foundations in Family Health Care Nursing
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families remain gender based (Haddock et al.,
2005; Scott & Braun, 2009).
What has changed relative to family roles is the
number of mothers who work outside of the home
and the role of the father. The rate of mothers with
infants under 1 year old working outside of the
home is 55.8% (Bureau of Labor Statistics, 2011).
Even though more women work outside of the
home and men are participating and doing more in
the home and with child care in the family than
ever before, the responsibility for child care still re-
mains largely with women (Kaakinen et al., 2010).
The role of the father has changed, but the degree
of change is unsure. A 2011 Pew Research Center
report indicates that one in four children under
the age of 18 years lives apart from their father
(Livingston & Parker, 2011). Many fathers who
live with their children are active in their day-to-
day activities. Fathers who live apart from their
children are often involved in e-mail and phone
conversations and visitation in varying amounts of
time. But 27% of the fathers who do not live with
their children indicate that they have not been in
communication with their children in the last year.
In general, the Pew report found no consensus on
whether or not today’s fathers are more involved
in the family life of their children than previous
generations of fathers (Livingston & Parker, 2011).
In every household, members have to decide the
ways work and responsibilities will be divided and
shared. Roles are negotiated, assigned, delegated,
or assumed. Division of labor within the family
household occurs as various members assume roles,
and as families change over time and over the fam-
ily life cycle. For example, family members need to
reconfigure role allocation after the birth or death
of family members.
Provider role: The provider role has undergone
significant change in the past few decades. Whereas
American men were once viewed as the sole pri-
mary family breadwinner, this has changed signifi-
cantly. In today’s world, many families need more
than one income to meet basic needs. Work con-
ditions have become increasingly stressful for men
and women, and external work obligations impinge
on members’ abilities to meet familial role obliga-
tions. For example, working mothers in Canada
were found to rely on processed and fast conven-
ience foods in the majority of meal preparations,
thus increasing the risk of poor health outcomes for
the family members, such as obesity (Slater,
Sevenhuysen, Edginton, & O’Neil, 2012).
Housekeeper and child care roles: Today,
many women experience significant role strain in
balancing provider and other familial roles.
Women who work continue to be responsible for
most housekeeping and child care responsibilities
(Haddock et al., 2005). Women who work outside
the home still perform 80% of the child care and
household duties (Walsh, 2011a). In a survey by
Hewlett and Luce (2006), 77% of women and 66%
of men who worked over 60 hours a week said they
were unable to maintain their household, 66% of
the sample reported they did not get sufficient
sleep, and half reported not getting enough exer-
cise. Although husbands’ roles in child care are in-
creasing, their focus is often on playing with the
children rather than meeting basic needs. Women
still are primary in meeting health care needs of all
family members, including children and men.
Sick role: Individuals learn health and illness be-
haviors in their family of origin. Health behaviors
are related to the primary prevention of disease, and
include health promotion activities to reduce sus-
ceptibility to disease and actions to reduce the effects
of chronic disease. Kasl and Cobb (1966) identified
three types of health behaviors in families:
■ Health behavior is any activity undertaken by
a person believing himself to be healthy for
the purpose of preventing disease or detecting
it at an asymptomatic stage.
■ Illness behavior is any activity, undertaken by
a person who feels ill, to define the state of
his health and to discover a suitable remedy.
■ Sick-role behavior is any activity undertaken
for the purpose of getting well, by those who
consider themselves ill.
Once a family member becomes ill, she demon-
strates various illness behaviors or enacts the “sick
role.” Parsons (1951) defines four characteristics of
a person who is sick:
■ While sick, the person is temporarily exempt
from carrying out normal social and family
roles. The more severe the illness, the freer
one is from role obligations.
■ In general, the sick person is not held
responsible for being ill.
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■ The sick person is expected to take actions to
get well, and therefore has an obligation to
“get well.”
■ The sick person is expected to seek compe-
tent professional medical care and to comply
with medical advice on how to “get well.”
Voluminous research has been conducted on the
theoretical concepts of the sick role. Some criti-
cisms of the Parsons perspective the sick role are as
follows: (1) some individuals reject the sick role; (2)
some individuals are blamed for their illness, such
as alcoholics or individuals with AIDS; and (3)
sometimes independence is encouraged in persons
who have a chronic illness as a way to “get well.”
Regardless of the theoretical debates about the
sick role, individuals in families experience acute and
chronic illness. Each family, depending on its family
processes, defines the sick role differently. Most
“sick” people require some level of care; someone
needs to assume the family caregiver role. The care-
giving role may be as simple as a stop at the store on
the way home to buy chicken soup or pick up med-
icines, or as involved as providing around-the-clock
care for someone. The female individuals in our so-
ciety still provide the majority of the care required
when family members become sick or injured.
Role strain, conflict, and overload: Family roles
are affected, some more than others, when a family
member becomes ill. Usually the women in the
family add the role of family caregiver to their
other roles. Nurses have a crucial role in helping
families adjust to illness by discussing and exploring
role strain, role conflict, and role overload. Nurses
can facilitate family adaptation by helping to
problem-solve role negotiations and helping fam-
ilies access outside resources.
Lack of competence in role performance may
be a result of role strain. Some researchers have
found that sources of role strain are cultural and
interactional. Interactional sources of role strain
are related to difficulties in the delineation and en-
actment of familial roles. Heiss (1981) identifies
five sources of difficulties in the interaction process
that place strain on a family system:
■ Inability to define the situation
■ Lack of role knowledge
■ Lack of role consensus
■ Role conflict
■ Role overload
The inability to define the situation creates am-
biguity about what one should do in a given sce-
nario. Continual changes in family structures and
gender roles means that members increasingly en-
counter situations in which guidelines for action
are unclear. Single parents, stepparents, nonresi-
dent fathers, and cohabitating partners deal daily
with situations for which there are no norms. What
right does a stepparent have to discipline the new
spouse’s child? Is a nonresident father expected to
teach his child about AIDS? What name or names
go on the mailbox of cohabitating partners? Who
can sign for consent when divorced parents share
custody?
Regardless of whether the issues are substantive,
they present daily challenges to the people in-
volved. Some choose to withdraw from the situa-
tion, and others choose to redefine the situation
when they are uncertain how to act. For instance,
a blended family might want to operate in the same
way as a traditional family but may experience con-
flict when thinking about which members to in-
clude in family decision making. When a solution
cannot be found, family members suffer the conse-
quences of role strain.
Role strain sometimes results when family
members lack role knowledge, or they have no
basis for choosing between several roles that
might seem appropriate. In America, most people
are not taught how to be parents, and much
learning is observational and experiential. Social-
ization related to caregiving of a chronically ill
family member seldom occurs, and many individ-
uals are unfamiliar with and unprepared to as-
sume the roles necessary for providing care.
When an individual is learning how to be a parent
or a caregiver, role training may be required.
Knowledge may be acquired by peer observation,
trial and error, or explicit instruction. Parents
may have limited opportunities to observe peers,
and other family members may not have the
knowledge necessary to help. Thus, the family
may need to seek external resources or obtain
needed information using other means such as
child care classes, self-help groups, or instruction
from health professionals. When individuals are
unable to figure out their roles in a situation, it
limits their problem-solving abilities.
Family members may lack role consensus, or be
unable to agree about the expectations attached to
a role. One family role that is often the source
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of family disagreement is the housekeeping role,
especially for dual-career couples. Men who have
been socialized into more traditional male roles
are less inclined to accept responsibility for house-
hold tasks readily and may limit the amount of
time they are willing to spend on these activities.
When active participation does not meet the
wife’s expectations, she tends to assume responsi-
bility for the greater number of household tasks.
If she has been socialized into thinking that
women are accountable for traditional housekeep-
ing roles, she may feel guilty or neglectful if she
asks for help. Lack of agreement about the role
sometimes results in familial discord and impedes
satisfaction with the partner. Negotiation is likely
the most effective way to reach consensus about
things that can be done.
Role conflict occurs when expectations about
familial roles are incompatible. For example, the
therapeutic role might involve becoming a care-
giver to an elderly parent, but expectations of this
new role may be incompatible with that of
provider, housekeeper, sexual partner, and child
care provider. Does one go to the child’s baseball
game or to the doctor with the elderly parent?
Role conflict may occur when roles present con-
flicting demands. Individuals and families often
have to set priorities. Demands of caregiver and
provider roles may be conflicting and may conflict
with other therapeutic familial tasks. The care-
giver may withdraw from activities that, in the
short term, seem superfluous, but in the long term
are sources of much-needed energy. Family
nurses are likely to encounter members facing
many strains because of role conflict, and may
need to assist by providing information and sug-
gesting ways the family could negotiate roles to
discover meaningful solutions.
A source of role strain closely related to role
conflict is role overload. In role overload, the in-
dividual lacks resources, time, and energy to meet
role demands. As with role conflict, the first option
usually considered is to withdraw from one of
the roles. Maintaining a balance between energy-
enhancing and energy-depleting roles reduces role
strain. An alternative to withdrawing from a role
might be to seek time away from some role re-
sponsibilities. For example, a friend of the family
member could relieve the primary caregiver for
several hours. Nurses could arrange for a home-
health aide to assist with personal care hygiene.
The dependent family member can be temporarily
cared for in a residential facility while the other
family members go on a vacation, which is called
respite care.
It is the role of the nurse to help families who
experience role strain, conflict, and overload. Using
anticipatory guidance, nurses work closely with
families to discuss and define the family flow of en-
ergy and resources when confronted with a family
caregiving situation. See Chapter 4 for ways to
work with families who experience stress related to
caregiving and caregiving roles.
Family Communication
Communication is an ongoing, complex, chang-
ing activity and is the means through which
people create, share, and regulate meaning in a
transactional process to make sense of their world
(Dance, 1967). In all families, communication
is continuous in that it defines their present reality
and constructs family relationships (Dance, 1967).
It is through communication that families find
ways to adapt to changes as they seek family sta-
bility. Families that are highly adaptive change
more easily in response to demands. Families with
low adaptability have a fixed or more rigid style of
interacting (Olson & Gorall, 2005). “Family
adaptability is manifested in how assertive family
members are with each other, the amount of con-
trol in the family, family discipline practices,
negotiation, how rigid family roles are adhered to,
and the nature and enforcement of rules in the
family” (Segrin & Flora, 2011, p. 17).
Family communication affects family physical
and mental health. Most programs and interven-
tion strategies for improving family communica-
tion are beyond the role and experience of nurses
with undergraduate education. The role of the
nurse is to facilitate family communication at times
when families are stressed by changes that occur
with its members, such as birth of an infant, growth
and development issues of children, when family
members become ill, or the death of family mem-
bers. It is the role of the nurse to assist family com-
munication to achieve healthful outcomes.
Family Decision Making
Communication and power are family processes
that influence decision making. Family decision
making is not an individual effort but a joint one.
Most health care decisions should be made from a
Family Health Care Nursing: An Introduction 29
3921_Ch01_001-032 05/06/14 10:54 AM Page 29
family perspective. Each decision has at least five
features: the person raising the issue, what is being
said about the issue, supporting action to what is
being said, the importance of what is being said,
and the responses of the individuals (Friedman,
Bowden, & Jones, 2003).
Decision making provides opportunity for vari-
ous family members to make a contribution to the
process, support one another, and jointly set and
strive to achieve goals. Disagreements within a
family are natural, because members often have dif-
ferent points of view. It is important for members
to share their various viewpoints with one another.
Problem solving is part of the decision-making
process, and frequently means that differences in
opinion and emotions need consideration.
Family communication processes influence
decision-making outcomes. In the Pew Research
Center (2006) report on family communication,
46% of the 3,014 subjects indicated that they
turned to their families for help and advice when
they had problems. Keep in mind that in family
conflicts, the expression of anger is not necessarily
destructive, but contempt, belligerence, and defen-
siveness are counterproductive (Gottman, Coan,
Carrere, & Swanson, 1998). Nurses working with
families can facilitate family communication skills
to help families find an effective way for resolving
differences and making decisions.
Families want to be involved in varying degrees
with health care decisions. Families are often
asked to help make end-of-life decisions, not to
resuscitate a loved one or to withdraw/withhold
life-sustaining therapies. See Chapter 4 for infor-
mation on shared decision making.
Family Rituals and Routines
Family rituals and routines have been studied for
decades, beginning with Bossard and Boll (1950).
Rituals are associated with formal celebrations, tra-
ditions, and religious observances with symbolic
meaning, such as bar mitzvahs, weddings, funerals.
Routines are patterned behaviors or interactions
that closely link to daily or regular activities, such
as bedtime procedure, mealtimes, greetings, and
treatment of guests (Buchbinder, Longhofer, &
McCue, 2009). Families have unique rituals and
routines that provide organization and give mean-
ing to family life. When family rituals and routines
are disrupted by illness, the family system as a
whole is affected; therefore, it can affect the health
of each family member and the family as a whole
(Buchbinder et al., 2009). The importance and
value of rituals in everyday life has been clearly ex-
plored in anthropological and sociological litera-
ture, but the significance of rituals is largely
ignored by nurses (Denham, 2003b).
Assessing rituals and routines related to specific
health or illness needs provides a basis to envision
distinct family interventions and to devise specific
plans for health promotion and disease manage-
ment, especially when adherence to medical regi-
mens is critical or caregiving demands are
burdensome to the families (Fiese, 2007). For
example, when a family member develops type
2 diabetes, the whole family may adapt its cooking,
eating, and shopping habits to accommodate
the needs of this family member (Denham,
Manoogian, & Schuster, 2007). It enhances com-
pliance with chronic illness treatment when the
family incorporates illness regimens into the basic
family tasks and practices (Buchbinder et al., 2009).
SUMMARY
This chapter provides an introduction and broad
overview to family health care nursing. The follow-
ing major concepts were discussed in this chapter:
■ Family health care nursing is an art and a
science that has evolved as a way of thinking
about and working with families.
■ Family nursing is a scientific discipline based
in theory.
■ Health and illness are family events.
■ The term family is defined in many ways, but
the most salient definition is, The family is
who the members say it is.
■ An individual’s health (on the wellness-
to-illness continuum) affects the entire
family’s functioning, and in turn, the
family’s ability to function affects each
individual member’s health.
■ Family health care nursing knowledge and
skills are important for nurses who practice
in generalized and in specialized settings.
■ The structure, function, and processes of
families have changed, but the family as a
unit of analysis and service continues to
survive over time.
■ Nurses should intervene in ways that pro-
mote health and wellness, as well as prevent
30 Foundations in Family Health Care Nursing
3921_Ch01_001-032 05/06/14 10:54 AM Page 30
illness risks, treat disease conditions, and
manage rehabilitative care needs.
■ Knowledge about each family’s structure,
function, and process informs the nurse in
how to optimize nursing care in families and
provide individualized nursing care, tailored
to the uniqueness of every family system.
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33
Family Demography
Continuity and Change in North
American Families
c h a p t e r 2
Lynne M. Casper, PhD
Sandra M. Florian, MA, PhD Candidate
Peter D. Brandon, PhD
C r i t i c a l C o n c e p t s
■ Economic, social, and cultural changes have increased family diversity in North America. More families are maintained
by single mothers, single fathers, cohabitating couples, and grandparents than in the past.
■ Increases in women’s labor force participation, especially among mothers, have reduced the amount of nonwork
time that families have to attend to health care needs.
■ North Americans are more likely to live alone than they were a few decades ago. Thus, people are less likely to have
family members living with them who can assist them when they become ill or injured.
■ The Great Recession has increased the likelihood that young adults will remain in or return to their parents’ homes
after graduating from school. Many of them cannot find a stable job that pays enough for them to live on their own.
In the United States, many young adults do not have health insurance and, thus, do not seek health care regularly.
■ More North Americans are immigrants than was the case a few decades ago. Family nurses provide care for an in-
creasingly ethnically, culturally, and linguistically diverse population.
■ Single-mother families are particularly vulnerable. They are more likely to live in poverty than are other families. These
mothers are usually the sole wage earners and care providers in their families. Thus, these families are more likely
than other families both to be monetarily poor and to face stringent time constraints.
■ Single-father families have been increasing in recent decades and fathers are spending more time caring for their children.
Nurses will be increasingly likely to encounter fathers who bring their children in for checkups or medical treatments.
■ Cohabitation among opposite- and same-sex couples continues to rise in North America. In the United States,
because cohabitating relationships are not legally sanctioned in many states and localities, partners may not have
the right to make health care decisions on behalf of each other or for the other partner’s children.
(continued)
3921_Ch02_033-066 05/06/14 10:55 AM Page 33
If there is one “mantra” about family life in the last
half century, it is that the family has undergone
tremendous change. No other institution elicits as
contentious debate as the North American family.
Many argue that the movement away from marriage
and traditional gender roles has seriously degraded
family life. Others view family life as amazingly
diverse, resilient, and adaptive to new circumstances
(Cherlin, 2009; Popenoe, 1993; Stacey, 1993).
Any assessment of the general “health” of family
life in North America, and the health and well-being
of family members, especially children, requires a
look at what is known about demographic and so-
cioeconomic trends that affect families. A pragmatic
approach to family nursing requires an understand-
ing of the broader changes in family within the pop-
ulation. The latter half of the 20th century was
characterized by tumultuous change in the econ-
omy, civil rights, and sexual freedom and by dra-
matic improvements in health and longevity.
Marriage and family life felt the reverberations of
these societal changes.
In the first decades of the 21st century, as North
Americans reassess where they have come from and
where they are going, one thing stands out—rhetoric
about the dramatically changing family may be a step
behind the reality. Recent trends suggest a quieting
of changes in the family in Canada, as well as the
United States, or at least of the pace of change. Little
change occurred in the proportions of two-parent or
single-parent families since the mid-1990s (U.S.
Census Bureau, 2011d). After a significant increase
in the proportion of children living with unmarried
parents, the living arrangements of children
stabilized, as did the living arrangements of young
adults and elderly persons. The divorce rate in-
creased substantially in the mid-1960s and 1970s,
reached its peak in 1980, slightly declined during the
1990s, and has remained relatively constant since
then. In the United States, between 43% and 46% of
marriages contracted today are expected to end in di-
vorce (Schoen & Canudas-Romo, 2006). The rapid
growth in cohabitation among unmarried adults has
also slowed. In Canada, divorce rates also increased
during the 1970s and 1980s, peaked slightly later in
1987, but have slightly declined since then. In 2008,
41% of marriages were expected to end in divorce
within the first 30 years (Statistics Canada, 2012b).
Yet, family life is still evolving. Young adults
have often postponed marriage and children to
complete higher education before attempting to
enter labor markets that have become inhospitable
to poorly educated workers. Accompanying this
delay in marriage was the continued increase in
births to unmarried women. By 2010, 41% of all
births in the United States were to unmarried
women (Martin et al., 2012).
Within marriage or marriage-like relationships,
the appropriate roles for each partner are shifting as
North American societies accept and value more
equal roles for men and women. The widening role
of fathers has become a major agent of change in the
family. More father-only families exist than in the
past, and after divorce, fathers are more likely to
share custody of children with the mother. Within
two-parent families, fathers are also more likely to be
involved in the children’s care than in the past
(Hernandez & Brandon, 2002). In addition, the
34 Foundations in Family Health Care Nursing
C r i t i c a l C o n c e p t s ( c o n t . )
■ Couples who are having trouble conceiving are increasingly turning to the medical profession for help. Births resulting
from assisted reproductive technologies (ARTs) are on the rise in North America. The ART process is expensive, time
consuming, and often increases health risks for the women and children involved.
■ Many children in North America are adopted. These children need time to adjust to their new circumstances and are
more likely than other children to have special health care needs.
■ Stepfamilies are common among North American families. Legal arrangements in these families can be complicated;
it is not always clear who has the right to make health care decisions for children in these families.
■ Many children are raised by or receive regular care from their grandparents. These grandparents may or may not
have legal responsibility for their grandchildren, but may seek medical care for them.
■ The aging of the population, as well as the impending retirement of the baby-boom generation, presents significant
challenges for both informal caregivers and the health care system. The need for nurses who specialize in caring for
elderly persons will continue to increase.
3921_Ch02_033-066 05/06/14 10:55 AM Page 34
number of same-sex couples has been increasing,
and a larger proportion of them are now raising chil-
dren. Family roles in same-sex couples are more
likely to be negotiated than in opposite-sex families.
Whether the slowing, and in some cases, cessa-
tion, of change in family living arrangements is a
temporary lull or part of a new, more sustained
equilibrium will only be revealed in the next
decades of the 21st century. New norms may be
emerging about the desirability of marriage, the
optimal timing of children, and the involvement
of fathers in child rearing and mothers in bread-
winning. Understanding the evolution of North
American families and the implications these
changes have for family nursing requires taking the
pulse of contemporary family life.
This chapter examines changes and variations
in North American families in order to understand
what these changes portend for family health care
nursing during the first half of this century. This
chapter draws on information pertaining to fam-
ily demography from a variety of data sources
(Box 2-1). The reader should note that family
nursing is not the major focus of this chapter.
The subject matter of the chapter is structured to
provide family nurses with background on
changes in the North American family so that
they can understand their patient populations.
The chapter does briefly touch upon the impli-
cations of these demographic patterns for prac-
ticing family nursing.
Where possible, statistics have been reported for
both the United States and Canada, but compara-
ble data for Canada were not always readily acces-
sible for the topics covered in this chapter. Readers
should note that data are not always collected in the
Family Demography: Continuity and Change in North American Families 35
BOX 2-1
Sources of Information on Demography and Public Health
Many of the statistics discussed in this chapter draw
on information from the Current Population Surveys
(CPS) collected by the U.S. Census Bureau. This is a
continuous survey of about 60,000 households, se-
lected at random to be representative of the national
population. Each household is interviewed monthly for
two 4-month periods. During February through April of
each year, the CPS collects additional demographic and
economic data, including data on health insurance
coverage, from each household. This Annual Demo-
graphic Supplement is the most frequently used source
of data on demographic and economic trends in the
United States and is the data source for the majority
of statistics presented in this chapter regarding changes
in the family.
For estimates for small areas or subgroups of the pop-
ulation, demographers often used data from the “long
form” of the decennial census, which collected data from
one-sixth of all households. The census collects a range of
economic and demographic information, including in-
comes and occupations, housing, disability status, and
grandparent responsibility for children. The census cannot
match the detail found in more specialized surveys. For
example, only four short questions measure disability for
children; surveys designed for precise and complete
estimates of disabilities will usually have dozens of such
questions. Since 2004, the American Community Survey
replaced the sample data from the census and now
provides a more continuous flow of estimates for states,
cities, counties, and even towns and rural areas, for which
estimates were made only once a decade.
Moreover, several large health-related surveys are
conducted by the National Center for Health Statistics.
The National Health Interview Survey (NHIS) is a large,
continuous survey of about 43,000 households per year,
covering the civilian, noninstitutionalized population of
the United States. The NHIS is the major source of infor-
mation on health status and disability, health-related
behaviors, and health care utilization for all age groups.
The National Health and Nutrition Examination Survey
(NHANES) includes physical examinations, mental health
questionnaires, dietary data, analyses of urine and blood,
and immunization status from a random sample of
Americans (about 10,000 in each 2-year cycle). NHANES
also collects some basic demographic and income data. It
is the major source of information on trends in obesity,
cholesterol status, and a host of other conditions in the
national population, and in particular age groups and
racial/ethnic groups. The National Survey of Family
Growth (NSFG) is the primary source of information on
marriage and divorce trends, pregnancy, contraceptive
use, and fertility behaviors, and the ways in which they
vary among different groups and over time. Birth and
death certificates, sent by hospitals and funeral homes to
state offices of vital events registration, provide the raw
material for calculating fertility and mortality rates and life
expectancy. The data are collected from the states and
analyzed by the National Center for Health Statistics.
In Canada, the National Population Health Survey has
interviewed a panel of respondents every 2 years since
1994 to track changes in health-related behaviors, risk
factors, and health outcomes.
3921_Ch02_033-066 05/06/14 10:55 AM Page 35
same year and that some family indicators are
defined and measured differently across the two
countries.
A CHANGING ECONOMY
AND SOCIETY
Consider the life of a North American young
woman reaching adulthood in the 1950s or early
1960s. Such a woman was likely to marry straight
out of high school or to take a clerical or retail sales
job until she married. She would have moved out
of her parents’ home only after she married to form
a new household with her husband. This young
woman was likely to marry by about age 20 in the
United States (U.S. Census Bureau, 2008), age 22
in Canada, and begin a family soon thereafter. If
she were working when she became pregnant, she
would probably have quit her job and stayed home
to care for her children and husband while her hus-
band had a steady job that paid enough to support
the entire family. Thus, usually someone was at
home who had the time to care for the health needs
of family members, to schedule routine checkups
with doctors and dentists, and to take family mem-
bers to these appointments.
Fast-forward to the first decades of the 21st cen-
tury. A young woman reaching adulthood in the
first decades of the 21st century is not likely to
marry before her 26th birthday. She will probably
attend higher education and is likely to live by her-
self, with a boyfriend, or with roommates before
marrying. She may move in and out of her parents’
house several times before she gets married. Like
her counterpart reaching adulthood in the 1950s,
she is likely to marry and have at least one child,
but the sequence of those events may well be re-
versed. She probably will not drop out of the labor
force after she has children, although she may cur-
tail the number of hours she is employed. She is
much more likely to divorce, and possibly even to
remarry, compared with a young woman in the
1950s or 1960s. Because she is more likely to be a
single mother and to be working outside of the
home, she is also not as likely to have the time nec-
essary to devote to caring for the health of family
members.
A dramatic change in women’s participation in
the labor market occurred after 1970, as mothers
with young children began entering the labor force
in greater numbers. Historically, unmarried mothers
(either never married or formerly married) of
young children had higher labor force participation
rates than married mothers. These women often
were the only earners in their families. One notable
change has been the increase in the combination of
paid work and mothering among married mothers.
In 1960, for example, in the United States, only
19% of married mothers with children younger
than age 6 were in the labor force. By 2011, the
proportion increased to 62% (U.S. Census Bureau,
2011e). In Canada, 28% of women with children
under the age of 3 were employed in 1976 com-
pared with 64% in 2009. Among mothers with
children under the age of 16 living at home, the
proportion is even higher at 73% (Statistics
Canada, 2010). Another truly remarkable change
has been the increase in the labor force participa-
tion of single mothers from 44% to 77% between
1980 and 2011 (U.S. Census Bureau, 2011j).
In Canada, the proportion of single mothers who
were employed in 1976 was 28% and increased
to 69% in 2009 (Statistics Canada, 2010). What
does this trend imply for family nursing? The
majority of North American families with young
children in the mid-20th century had mothers who
were home full-time to care for the health needs of
family members, whereas at the beginning of the
21st century such families were in the minority.
Changes in the Economy
Economic conditions have an influence on young
people’s decisions about when to enter the labor
force, when to marry, and when to have children
(and how many children to have). After World War
II, the United States and Canada enjoyed an eco-
nomic boom characterized by rapid economic
growth, full employment, rising productivity,
higher wages, low inflation, and increasing earn-
ings. A man with a high-school education in the
1950s and 1960s could secure a job that paid
enough to allow him to purchase a house, support
a family on one income, and join the swelling ranks
of the middle class.
The economic realities of the 1970s and 1980s
were quite different. The two decades after the
oil crisis, which began in 1973, were decades of
economic change and uncertainty marked by a
shift away from manufacturing and toward serv-
ices, stagnating or declining wages (especially for
36 Foundations in Family Health Care Nursing
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Family Demography: Continuity and Change in North American Families 37
less-educated workers), high inflation, and a
slowdown in productivity growth. The 1990s
were just as remarkable for the turnaround: sus-
tained prosperity, low unemployment, and eco-
nomic growth that seems to have reached many
in the poorest segments of society (Farley, 1996;
Levy, 1998). The Great Recession, which began
in 2008, reversed this trend, and many men and
women joined the ranks of the unemployed.
When the economy is on such a roller coaster,
family life often takes a similar ride. Marriage oc-
curred early and was nearly universal in the decades
after World War II; mothers remained in the home
to rear children as the baby-boom generation was
born and nurtured. When baby boomers hit work-
ing age in the 1970s, the economy was not as hos-
pitable as it had been for their parents. They
postponed marriage, delayed having children, and
found it difficult to establish themselves in the
labor market.
Many of the baby boomers’ own children began
reaching working age in the 1990s and 2000s, when
individuals’ economic fortunes were increasingly
dependent on their educational attainment. Those
who attended higher education were much more
likely to become self-sufficient and to live inde-
pendently from their parents (Rosenfeld, 2007).
High-school graduates who did not go to higher
education discovered that jobs with high pay and
benefits were in relatively short supply. In the
United States, a high-school graduate in full-time
work earned about 25% (allowing for inflation) less
than a comparable new worker would have earned
20 years earlier (Farley, 1996). The increasing rel-
ative benefits of further education encouraged
more young men and women to delay marriage and
attend higher education.
Partly because of these changes in the econ-
omy, both men and women are remaining single
longer and are more likely to leave home to pur-
sue higher education, to live with a partner, and
to launch a career before taking on the responsi-
bility of a family of their own. The traditional
gender-based organization of home life (in which
mothers have primary responsibility for care of
the home and children and fathers provide finan-
cial support) has not disappeared, but young
women today can expect to be employed while
raising children, and young men are more likely
to share in some child-rearing and household
tasks. Thus, in the first decades of this century,
men are more likely to play a role in looking after
the health of family members than they were in
previous decades.
Before World War II, most men worked nearly
to the end of their lives. Retirement was a privi-
lege for the wealthy or the fortunate workers
whose companies provided pensions. Currently,
with increases in life expectancy and healthier
lives, the passage of the Social Security Acts in
1936 and 1938 in the United States, and the in-
stitution of provincial (in the 1920s) and federal
(since 1952) pensions in Canada, most workers
can look forward to at least a modest guaranteed
income for themselves and their spouses and
minor children. Social Security benefits constitute
more than half of the household income for two-
thirds of Americans older than 65. The increased
availability of public pensions made possible a
growing period of retirement for most workers, a
steady decrease in poverty rates for older people,
and an increase in the proportion of older people
maintaining their own households separately from
their adult children.
Changing Family Norms
In 1950, in North America, there was one domi-
nant and socially acceptable way for adults to live
their lives. Those who deviated could expect to be
censured and stigmatized. The “ideal” family was
composed of a homemaker-wife, a breadwinner-
father, and two or more children. Americans shared
a common image of what a family should look like
and how mothers, fathers, and children should be-
have. These shared values reinforced the impor-
tance of the family and the institution of marriage
(McLanahan & Casper, 1995). This vision of fam-
ily life showed amazing staying power, even as its
economic underpinnings were eroding. For this
1950s-style family to exist, North Americans had
to support distinct gender roles, and the economy
had to be vibrant enough for an average man to
support a family financially on his own.
Government policies and business practices per-
petuated this family type by reserving the best jobs
for men and discriminating against working
women when they married or had a baby. Begin-
ning in the 1960s, though, women and people from
minority backgrounds gained legal protections in
the workplace and discriminatory practices began
to recede.
3921_Ch02_033-066 05/06/14 10:55 AM Page 37
A transformation in attitudes toward family be-
haviors also took place. People became more ac-
cepting of divorce, cohabitation, and sex outside
marriage; less sure about the universality and per-
manence of marriage; and more tolerant of blurred
gender roles and of mothers working outside the
home (Bianchi, Raley, & Casper, 2012; Cherlin,
2009). Society became more open-minded about a
variety of living arrangements, family configura-
tions, and lifestyles.
Although the transformation of many of these
attitudes occurred throughout the 20th century, the
pace of change accelerated in the 1960s and 1970s.
These years brought many political, social, and
medical upheavals affecting gender issues and views
of the family. The women’s liberation movement
included a highly publicized, although unsuccessful,
attempt to pass the Equal Rights Amendment
(ERA) to the Constitution of the United States.
New and effective methods of contraception were
introduced in the 1950s and 1960s. In 1973, the
U.S. Supreme Court ruled that state laws banning
abortion were unconstitutional. In Canada, abor-
tion was illegal until 1969 when the law was
changed to allow abortions for health reasons. Pop-
ular literature and music heralded the sexual revo-
lution and an era of “free love.” In all industrialized
countries, a new ideology was emerging during
these years that stressed personal freedom, self-
fulfillment, and individual choice in living arrange-
ments and family commitments (Bianchi et al.,
2012; Cherlin, 2009). People began to expect more
out of marriage and to leave marriages that failed to
fulfill their expectations. Certainly not all Americans
approved of all these changes in beliefs and behav-
iors. The general North American culture changed,
though, as divorce and single parenting became
more widespread realities.
An Aging Society
For Americans born in 1900, the average life
expectancy was less than 50 years. But the early
decades of the 20th century brought such tremen-
dous advances in the control of communicable
diseases of childhood that life expectancy at birth
increased to 70 years by 1960. Rapid declines
in mortality from heart disease—the leading cause
of death—significantly lengthened life expectancy
for those aged 65 or older after 1960 (Treas &
Torrecilha, 1995). By 2009, life expectancy at birth
was nearly 79 years for Americans (National Cen-
ter for Health Statistics, 2008) and 81 years for
Canadians (World Health Organization, 2011). An
American woman who reached age 60 in 2009
could expect to live an additional 25 years, on av-
erage, and a 60-year-old American man would live
another 22 years. For Canadians, life expectancy
at age 60 is even higher—26 years for women and
23 years for men. Women continue to outlive men
in North America, though the gender gap in recent
years has shrunk somewhat, primarily because
of the delayed effects of smoking trends (men have
always been more likely to smoke than women, but
they have reduced smoking much more than
women in recent decades). The gap in life ex-
pectancy between men and women means that
women tend to outlive their husbands and women
predominate in the older age groups. About 60%
of the population 75 years and older in the United
States and Canada are women (Statistics Canada,
2012d).
Partly because more North Americans are sur-
viving until older ages, and partly because of a
long-term decline in fertility rates, the propor-
tion of the population aged 65 or older has
grown. In 1900, only 1 of every 25 Americans was
aged 65 or older (nearly 3% of the total popula-
tion). By 2011, the proportion was more than
3 in 25 (13% of the total population). In 2011,
the first of some 78 million baby boomers
reached their 65th birthdays, and the rate of in-
crease of the population of elderly persons began
to accelerate. By 2030, it is expected that one in
five Americans will be aged 65 or older. The sce-
nario for Canada is similar, although Canada has
a slightly higher proportion of the population
aged 65 and older; in 2011, 14.8% of Canada’s
population was 65 years and older compared with
13.3% of U.S. residents (Statistics Canada,
2011a; U.S. Census Bureau, 2011d).
People do not suddenly become old on their
65th birthday, of course. Together with improve-
ments in life expectancy have come improvements
in the disability rates at older ages, so that North
Americans are not only living longer than in the
past but also enjoying more years of life without
chronic illness or disabilities. In the United States,
65 is still a convenient marker for “old age” in
health policy terms, because it is the age at which
most Americans become eligible for medical and
hospital insurance funded mainly by the federal
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government through Medicare. By 65, as well,
most workers (both men and women) have left full-
time work, though many continue to work part-
time, or for part of the year, often at different jobs
than those they pursued during most of their ca-
reers. Given the growing number of elderly per-
sons, the Canadian government will raise the
eligible age for Old Age Security (OAS) from 65 to
67 between 2023 and 2029 to ease pressures on the
OAS budget and to ensure the program’s sustain-
ability (Service Canada, 2012).
The aging of the population is often considered
a major cause of increasing demand for medical
services and of the growth in medical expenditures.
Population aging is, indeed, one factor, because
older people in every country consume more med-
ical care than younger adults. The major causes of
increased health expenditures in industrialized
countries, however, have been changes in medical
technology, including increased use of pharmaceu-
ticals, rather than the simple growth of the popu-
lation of elderly persons (Reinhardt, 2003).
Increased life expectancy translates into ex-
tended years spent in family relationships. A couple
who marry in their twenties could spend the next
50 years together, assuming they remain married.
Couples in the past were much more likely to ex-
perience the death of one spouse earlier in their
adult years. Longer lives (together with lower birth
rates) also mean that people spend a smaller por-
tion of their lives parenting young children. More
parents live long enough to be part of their grand-
children’s and even great-grandchildren’s lives
(Bengtson, 2001). Many adults are faced with the de-
mands of caring for extremely elderly parents about
the time they reach retirement age and begin to ex-
perience health limitations of older age themselves.
Immigration and Ethnic Diversity
In 1965, the U.S. Congress amended the Immigra-
tion and Naturalization Act to create a fundamental
change in the nation’s policy on immigration. Visas
for legal immigrants were no longer to be based on
quotas for each country of origin; instead, prefer-
ence would be given to immigrants joining family
members in the United States. The legislation also
removed limitations on immigration from Latin
America and Asia. The numbers of legal immi-
grants to the United States increased, to an average
of 900,000 persons per year in the 1990s and to
1.1 million in 2011. Immigration has likewise in-
creased in Canada from about 140,000 in 1980 to
249,000 in 2011. In 2011, 66% of legal immigrants
were admitted to the United States because family
members already living there petitioned the gov-
ernment to grant them entry (U.S. Department of
Homeland Security, 2012). For Canada, the corre-
sponding figure is 61% (Citizenship and Immigra-
tion Canada, 2011). Immigrant visas were also
granted for economic reasons, usually after em-
ployers petitioned the government for admission
of persons with special skills or for humanitarian
reasons, including asylum granted to refugees be-
cause of well-founded fear of persecution in their
home countries. In the United States and Canada,
immigration laws provide refugees with resettle-
ment assistance including temporary health care
services. The goal of these programs is to promote
and improve the health of refugees, as well as
to control the potential spread of any contagious
diseases brought into the country by these immi-
grants. The benefits of these health programs
are restricted to the prevention and treatment
of disease that poses a risk to the public health
and safety (Citizenship and Immigration Canada,
2012; U.S. Centers for Disease Control and
Prevention, 2010).
In addition to legal immigrants, an estimated
10.8 million illegal immigrants lived in the United
States in 2010, either because they entered without
detection or because they stayed longer than
allowed by a temporary visa (Hoefer, Rytina, &
Baker, 2011). In 2010, the U.S. Census Bureau es-
timated that there were 40 million U.S. residents
born outside the country, nearly 13% of the total
population (Grieco et al., 2012). Because immi-
grants tend to arrive in the United States early in
their working careers, they are younger, on aver-
age, than the overall U.S. population and account
for a larger share of young families. In 2010, for ex-
ample, 20% of all births in the United States were
to mothers born outside the country (U.S. Census
Bureau, 2010e). Illegal immigrants are ineligible
for any type of federal public benefits including
welfare, Social Security, and health services such as
Medicaid and Medicare (U.S. Department of
Health and Human Services, 2009).
Estimates based on 2007 U.S. American Com-
munity Survey data reveal that 55 million people
older than age 5 speak a language other than Eng-
lish at home, the most common being Spanish
Family Demography: Continuity and Change in North American Families 39
3921_Ch02_033-066 05/06/14 10:55 AM Page 39
(34.5 million) and Chinese (2.5 million). In the
United States, half of adults 18 to 40 years old who
speak Spanish at home reported that they could
not speak English well (Shin & Kominski, 2010).
Keep in mind, however, that the overwhelming
majority of those who do not speak English well
are recent immigrants. More than 96% of the
native-born who speak Spanish at home report
that they can speak English well (Saenz, 2004). In
Canada, although English and French are still
dominant, more than 200 languages are now spo-
ken in the country. In 2011, 6.6 million people,
representing nearly 20% of the Canadian popula-
tion, reported speaking a language other than
English or French at home. Of them, a third, or
2.1 million, reported speaking only a language
other than English or French at home, primarily
Asian languages. The 10 most common foreign
languages spoken in 2011 in Canada were Punjabi,
Chinese (not specified), Cantonese, Spanish,
Tagalog, Arabic, Mandarin, Italian, Urdu, and
German (Statistics Canada, 2012h).
The majority of foreign-born U.S. residents live
in states that are the traditional “gateways” to
immigrant populations: California, New York,
Florida, Texas, and Illinois. In recent decades,
however, significant increases have occurred in the
immigrant populations of most parts of the coun-
try, including the rural South and the Upper Mid-
west, which had seen few immigrants for most of
the 20th century (Singer, 2004).
Implications for Health Care Providers
The aging and the growing diversity of the American
and Canadian populations, combined with shifts
in the economy and changing norms, values,
and laws, have altered the context for the nursing
care of families. As the population ages, the
demand will increase for nurses who specialize in
caring for elderly persons, and even those who do
not choose a geriatric specialty will find that older
people constitute an increasing portion of the
patient population. Improvements in health and
physical functioning among those aged 60 to 70
reduce the need for care among this group. Yet
rates of population growth are greatest for those
aged 80 and older, implying an increased demand
for care among the “oldest old” who are likely to
suffer from poorer health and require substantial
care. Because women continue to outlive men, on
average, nurses are more likely to be dealing with
the health care needs of older women than of men.
Extended lives and delayed childbearing have in-
creased the chances that adults will experience the
double whammy of having to provide care and
financial support for their children and their par-
ents. Families in these situations can face consider-
able time and money pressures.
At the same time that changing gender roles
point to more men in families taking on caregiving
duties, more women are in the labor force and un-
available to care for family members, and it is
doubtful that the increase in men’s time in caregiv-
ing will fully compensate for the decrease in
women’s time. Individuals and families are increas-
ingly turning to extended kin and informal care
providers to meet their health needs. Societal
changes also influence individuals’ life-course
trajectories. All these changes in individual lives
and family relationships are transforming North
American households and families and, in turn,
changing the context in which health needs are de-
fined and both formal and informal health care are
provided. Nurses are more likely to encounter
fathers seeking health care for their children, and
individuals whose health needs are met by informal
extended kin or untrained caretakers, especially
among the fragile and older populations.
The growth of the immigrant population, and
its spread throughout both the United States and
Canada, has meant that patient populations in
many regions are more racially and ethnically
diverse than in the past. Working with a diverse
pool of immigrant and refugee populations, health
care providers may encounter health conditions
and diseases unusual in North America. Nurses in
North America work with families whose cultural
backgrounds, perceptions of sickness, and expecta-
tions of healers may be different from those
with which they are familiar. Everyone providing
health care can expect to face both the challenges
and the professional rewards of adapting to a
diverse patient population.
LIVING ARRANGEMENTS
The demographic changes for individuals dis-
cussed earlier in this chapter are reflected
in changes in living arrangements, which have
become more diverse over time. For most statistical
40 Foundations in Family Health Care Nursing
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purposes, a family is defined as two or more peo-
ple living together who are related by blood, mar-
riage, or adoption (Casper & Bianchi, 2002).
Most households (defined by the U.S. Census
Bureau as one or more people who occupy a
house, apartment, or other residential unit, as op-
posed to “group quarters” such as nursing homes
or student dormitories) are maintained by fami-
lies. Demographic trends, including late mar-
riage, divorce, and single parenting, have resulted
in a decrease in the “family share” of U.S. and
Canadian households. In 1960, in the United
States, 85% of households were family house-
holds; by 2012, just 66% were family households
(U.S. Census Bureau, 2012). Married-couple
family households with children under 18 consti-
tuted 44% of all households in 1960, but only
20% of all households in 2012 (authors’ calcula-
tions from U.S. Census Bureau, 2012). Nonfam-
ily households, which consist primarily of people
who live alone or who share a residence with
roommates or with a partner, have been on the
rise. The fastest growth was among persons living
alone, although much of this growth occurred
during the 1960s and 1970s. The proportion of
households with just one person more than dou-
bled from 13% to 27% between 1960 and 2012
(authors’ calculations from U.S. Census Bureau,
2012). Thus, fewer Americans live with family
members who can help care for them when they
are ill or injured.
In Canada, in 1981, two-thirds of households
were single-family households maintained by
married or cohabitating couples, but by 2011 the
percentage declined to 56% (Statistics Canada,
2011c). As in the United States, the percentage
of households that contained two parents with
children declined from 36% in 1981 to 26% in
2011. The proportion of Canadian households
that contained one person grew from 20% in
1981 to 28% in 2011. Single-person households
were the fastest growing type of household
(Casper & Bianchi, 2002). With the diversity of
family forms that have emerged, nurses are in-
creasingly likely to encounter patients who are
living alone and have no one to help them in the
home should they become seriously ill. Nurses
will come into contact with more single-mother
families who are more likely than other types of
families to be time poor and cash strapped. In
fact, most families with children today do not
conform to the traditional notion of a breadwinner/
homemaker family.
Living Arrangements of Elderly Persons
Improvements in the health and financial status of
older Americans helped generate a revolution in
lifestyles and living arrangements among elderly
persons. Older North Americans now are more
likely to spend their later years with their spouse or
live alone, rather than with adult children as in the
past. The options and choices differ between eld-
erly women and elderly men, however, in large part
because women live longer than men, yet have
fewer financial resources.
At the beginning of the 20th century, more than
70% of Americans aged 65 or older resided with kin
(Ruggles, 1994). In part because of increased
incomes of elderly persons but also because of
declining numbers of children and increased di-
vorce rates, the proportion of elderly adults living
alone has increased dramatically. Just 15% of wid-
ows aged 65 or older lived alone in 1900, whereas
66% lived alone in 2011 (Ruggles, 1996; U.S. Census
Bureau, 2011b). In 2011, 44% of the population
aged 65 and older lived alone (U.S. Census Bureau,
2011l).
A woman is likely to spend more years living
alone after a spouse dies than will a man because
life expectancy is about 3 years longer for an elderly
woman than for an elderly man, and because
women usually marry men older than themselves.
As a result, older American women are nearly twice
as likely as men to be living alone (37% vs. 19%)
(U.S. Census Bureau, 2011b). This pattern is sim-
ilar in Canada; for example, in 2011 among Cana-
dians aged 65 and older, 32% of women lived alone
compared with only 16% of men (Statistics
Canada, 2011b). Just under half of all American
women aged 75 and older live by themselves (U.S.
Census Bureau, 2011b). Living alone can mean de-
lays in getting attention for illness or injury and can
complicate arrangements for informal care or
transportation to formal care when needed.
Elderly American women are also more than
twice as likely as men to be living with someone
other than their spouse (19% vs. 9%), in part be-
cause they tend to live longer and reach advanced
ages when they are most likely to need the physical
care and the financial help others can provide
(authors’ calculations from U.S. Census Bureau,
Family Demography: Continuity and Change in North American Families 41
3921_Ch02_033-066 05/06/14 10:55 AM Page 41
2012). In the United States, 43% of adults over 65
will reside in assisted living facilities at some point
in their lives. In Canada, a larger proportion of
women (33%) than men (22%) aged 85 and older
lived in institutional settings in 2011 (Statistics
Canada, 2011b). Elderly men who need help with
activities of daily living (ADLs) such as eating,
bathing, or getting around generally receive infor-
mal care from their wives, whereas elderly women
with disabilities are more likely to rely on assistance
from grown children, to live with other family
members, or to enter a nursing home (Silverstein,
Gans, & Yang, 2006).
To explain trends in living arrangements among
elderly persons, researchers have focused on a
variety of constraints and preferences that shape
people’s living arrangement decisions (Bianchi,
Hotz, McGarry, & Seltzer, 2008). The number and
sex of children generally affect the likelihood that
an elderly person will live with relatives. The
greater the number of children, the greater the
chances that there will be a son or daughter who
can take care of an elderly parent. Daughters are
more likely than sons to provide housing and care
for an elderly parent, presumably as an extension
of the traditional female caretaker role and stronger
norms of filial responsibility. Geographical distance
from children is also a key factor; having children
who live nearby promotes co-residence when living
independently is no longer feasible for the elderly
person (Haxton & Harknett, 2009; Silverstein
et al., 2006).
Older Americans with higher income and bet-
ter health are more likely to live independently
(Klinenberg, 2012). In the United States, since
1940, growth in Social Security benefits ac-
counted for half of the increase in independent
living among elderly persons (McGarry &
Schoeni, 2000). By contrast, elderly Americans in
financial need are more likely to live with rela-
tives (Klinenberg, 2012).
Social norms and personal preferences also
determine the choice of living arrangements for
elderly persons (Seltzer, Lau, & Bianchi, 2012;
Silverstein et al., 2006). Many elderly individuals
are willing to pay a substantial part of their in-
comes to maintain their own residence, which sug-
gests strong personal preferences for privacy and
independence (Klinenberg, 2012). Social norms
involving family obligations and ties may be espe-
cially important when examining racial and ethnic
differences in the living arrangements of elderly
persons. Immigrants and ethnic minorities are more
likely than whites to live with an elderly relative
not only because of their often limited economic
circumstances, but also because their cultural norms
and values stipulate moral obligations to care for
the elderly (Cohen & Casper, 2002; Glick & Van
Hook, 2002).
Despite the trend toward independent living
among older Americans, many of them are not able
to live alone without assistance. Many families who
have older kin in frail health provide extraordinary
care. One study in New York City, for example,
found that 40% of those who reported caring for
an elderly relative devoted 20 or more hours per
week to such informal care, and 80% of caregivers
had been providing care for more than a year
(Navaie-Walsier et al., 2001).
Despite the growth of home-health services and
adult day-care centers, most long-term care con-
sists of care provided informally, usually by spouses
or younger relatives (Stone, 2000). Adult women,
in particular, are likely to have primary responsi-
bility for home care of frail elderly persons, often
including parents-in-law. Some evidence suggests
that female caregivers experience greater levels of
stress than do male caregivers (Yee & Schulz,
2000). Research has shown that even relatively low-
cost interventions, such as support groups and tele-
phone counseling, to assist informal caregivers can
greatly reduce the harmful effects of such stress on
caregivers’ health (Belle & REACH II Investiga-
tors, 2006).
Living Arrangements of Young Adults
The young-adult years (ages 18–30) have been
described as “demographically dense” because
these years involve many interrelated life-altering
transitions (Rindfuss, 1991). Between these ages,
young people usually finish their formal schooling,
leave home, develop careers, marry, and begin
families, but these events do not always occur in
this order. Delayed marriage extends the period
during which young adults can experiment with
alternative living arrangements before they adopt
family roles. Young adults may experience any
number of independent living arrangements
before they marry, as they change jobs, pursue
education, and move into and out of intimate re-
lationships. They may also return to their parents’
42 Foundations in Family Health Care Nursing
3921_Ch02_033-066 05/06/14 10:55 AM Page 42
homes for periods of time, if money becomes tight
or at the end of a relationship.
In 1890, half of American women had married
by age 22, and half of American men had married
by age 26. The ages of entry into marriage dipped
to an all-time low during the post–World War II
baby-boom years, when the median age at first
marriage reached 20 years for women and 23 years
for men in 1956. Age at first marriage then began
to increase and reached 26 years for women and
28 years for men by 2009 (Kreider & Ellis, 2011b).
In Canada, the average age at marriage increased
from 25 years in 1972 to 31 years in 2008 for men
and from 23 years to 29 years for women (Statistics
Canada, 2008). In 1960, it was unusual for a woman
to reach age 25 without marrying; only 10% of
women aged 25 to 29 had never married (Casper
& Bianchi, 2002). In 2011, 50% of women aged
25 to 29 in the United States and 64% of men in
the same age group had never been married (U.S.
Census Bureau, 2011h).
This delay in marriage has shifted the family and
living arrangement behaviors in young adulthood
in three important ways. First, later marriage coin-
cides with a greater diversity and fluidity in living
arrangements in young adulthood. Second, delay-
ing marriage has accompanied an increased likeli-
hood of entering a cohabitating union before
marriage. Third, the trend to later marriage affects
childbearing; it tends to delay entry into parent-
hood and, at the same time, increases the chances
that a birth (sometimes planned but more often un-
intended) occurs before marriage (Bianchi &
Casper, 2000).
Many demographic, social, and economic fac-
tors influence young adults’ decisions about where
and with whom to live (Casper & Bianchi, 2002).
Family and work transitions are influenced greatly
by fluctuations in the economy, as well as by chang-
ing ideas about appropriate family life and roles for
men and women. Since the 1980s, the transition to
adulthood has been hampered by recurring reces-
sions, tight job markets, slow wage growth, and
soaring housing costs, in addition to the confusion
over roles and behavior sparked by the gender rev-
olution. Even though young adults today may pre-
fer to live independently, they may not be able to
afford to do so (Rosenfeld, 2007). Many entry-level
jobs today offer low wages, yet housing costs have
soared, putting independent living out of reach for
many young adults. Higher education, increasingly
necessary in today’s labor market, is expensive, and
living at home may be a way for families to curb
higher education expenses. Even when young
adults attend school away from home, they still fre-
quently depend on their parents for financial help
and may return home after graduation if they can-
not find a suitable job.
The percentage of young men living in their
parents’ homes was 59% in 2011, about the same
as in 1970, whereas the percentage increased for
young women from 39% to 50% (U.S. Census
Bureau, 2011i). In Canada, the proportion of
young adults who resided with their parents in-
creased dramatically from 28% in 1981 to 44% in
2006 (Statistics Canada, 2007).
Young adults who leave home to attend school,
join the military, or take a job have always had, and
continue to have, high rates of “returning to the
nest” and have become known as “boomerang chil-
dren.” Those who leave home to get married have
had the lowest likelihood of returning home,
although returns to the nest have increased over
time even in this group.
American parents often take in their children
after they return from the military or school, or
when they are between jobs. In the past, however,
many American parents apparently were reluctant
to take children in if they had left home simply to
gain “independence.” This is not true today. Before
the 1970s, leaving home for simple independence
was probably the result of friction within the fam-
ily, whereas today, leaving and returning home
seems to be a common part of a successful transi-
tion to adulthood (Klinenberg, 2012; Rosenfeld,
2007). In the past, a young adult may have been
reluctant to move back in with parents because a
return home implied failure; fewer stigmas are
attached to returning home these days (Casper &
Bianchi, 2002).
Changing demographic behaviors among young
adults and their living arrangements have implica-
tions for family health care nursing. In contrast to
the situation in Canada, in the United States,
young adults often lack health insurance and, in
many cases, are not financially independent, reduc-
ing the likelihood that they will receive routine
checkups or seek medical care when the need arises
(Casper & Haaga, 2005). The increasing numbers
of people showing up in emergency rooms and
urgent care settings put additional pressure on the
health care providers, especially nurses. Also, the
Family Demography: Continuity and Change in North American Families 43
3921_Ch02_033-066 05/06/14 10:55 AM Page 43
acuity level of the medical problems in these young
adults is greater because they did not seek earlier
treatment.
Unmarried Opposite-Sex Couples
One of the most significant household changes
in the second half of the 20th century in North
America was the increase in men and women living
together without marrying. The increase of cohab-
itation outside marriage appeared to counterbalance
some of the delay of marriage among young adults
and the overall increase in divorce. Unmarried-
couple households made up less than 1% of U.S.
households in 1960 and 1970 (Casper & Cohen,
2000). This share increased just over 2% by 1980,
and to nearly 9% by 2011, representing 7.6 million
family groups (U.S. Census Bureau, 2011m).
Unmarried-couple households also are increas-
ingly likely to include children. In 1978, 24% of
unmarried-couple households included children
younger than 15; by 2011, 40% of unmarried-
partner family groups included children. Although
the percentage of U.S. households consisting of an
unmarried couple is small, many Americans have
lived with a partner outside marriage at some point.
Nearly 62% of the couples who married between
1997 and 2002 had lived together before marriage,
up from 49% in 1985 to 1986, and a big jump from
just 8% of first marriages in the late 1960s (Bumpass
& Lu, 2000; Kennedy & Bumpass, 2008).
In Canada, cohabitating couples are known as
common-law couples. The 2001 Canadian Census
showed that increasing proportions of families were
headed by common-law couples, from 5.6% in 1981
to 13.8% in 2001. By 2011 this figure increased to
17% (Statistics Canada, 2012e). As in the United
States, more Canadian children are living with
common-law (cohabitating) parents. Nearly 44% of
common-law couples in 2011 have children under
age 24 residing with them. In 2011, about 910,700
children aged 0 to 14 (16.3% of the total) lived
with common-law parents, up from 12.8% in 2001
(Statistics Canada, 2012e). In both countries, the
pace of the increase in cohabitation has slowed some-
what since the rapid rise in the 1970s and 1980s.
Why has cohabitation increased so much? Re-
searchers have offered several explanations, includ-
ing increased uncertainty about the stability of
marriage, the erosion of the stigma associated with
cohabitation and sexual relations outside of
marriage, the wider availability of reliable birth
control, economic changes, and increased individ-
ualism and secularization (Bianchi et al., 2012;
Cherlin, 2009). Youths reaching adulthood in the
past two decades are much more likely to have wit-
nessed their parents’ divorce than any generation
before them. Some have argued that cohabitation
allows a couple to experience the benefits of an
intimate relationship without committing to mar-
riage. If a cohabitating relationship is not success-
ful, one can simply move out; if a marriage is not
successful, one suffers through a sometimes
lengthy and difficult divorce.
Nevertheless, most adults in the United States
eventually do marry. In 2011, 90% of women aged
50 to 54 had been married at least once (U.S. Census
Bureau, 2011h). An estimated 88% of U.S. women
born in the 1960s will eventually marry; however,
considerable differences exist by race/ethnicity
(Raley, 2000). For example, 88% of African
American women reaching adulthood in the 1960s
would eventually marry, compared with only 66%
coming of age in the 2000s. The meaning and per-
manence of marriage may be changing, however.
Marriage used to be the primary demographic
event that marked the formation of new house-
holds, the beginning of sexual relations, and the
birth of a child. Marriage also implied that an
individual had one sexual partner, and it theoreti-
cally identified the two individuals who would par-
ent any child born of the union. The increasing
social acceptance of cohabitation outside marriage
has meant that these linkages can no longer be
assumed. Couples began to set up households that
might include the couple’s children, as well as chil-
dren from previous marriages or other relation-
ships (Casper & Bianchi, 2002). Similarly, what it
meant to be single was no longer always clear, as
the personal lives of unmarried couples began to
resemble those of their married counterparts.
Cohabitating households can pose unique
challenges for health care providers, especially in
the United States. Because cohabitating relation-
ships are not legally sanctioned in most states,
partners may not have the right to make health
care decisions on behalf of each other or of the
other’s children (Casper & Haaga, 2005). Cohab-
itating couples report poorer health and have
lower incomes than do married couples, on aver-
age (Waite & Gallagher, 2000). Thus, although
they are more likely to need health care services,
they may be less likely to have the financial ability
to secure them.
44 Foundations in Family Health Care Nursing
3921_Ch02_033-066 05/06/14 10:55 AM Page 44
Same-Sex Couples
The number of same-sex couples has increased sub-
stantially in North America over the past couple of
decades. A conservative estimate shows that the num-
ber of same-sex couples in the United States grew by
80% from 358,390 in 2000 to 646,464 in 2010
(Lofquist, Lugaila, O’Connell, & Feliz, 2012). In
Canada, the number of same-sex couples increased
by 42.4% from 45,345 in 2006 to 64,575 in 2011, of
which nearly a third were married couples (Statistics
Canada, 2012e). The vast majority of same-sex cou-
ples live in common-law or cohabitating relation-
ships. Before 2000, same-sex marriage was not legally
recognized. In 2005, however, after the Netherlands
and Belgium, Canada became the third country to
legalize same-sex marriage. Following legalization,
the number of same-sex married couples in Canada
almost tripled from 7,465 in 2006 to 21,015 in 2011
(Statistics Canada, 2012e). In the United States, fed-
eral law provides each state with autonomy to grant
marriage recognition and legal rights to same-sex
couples. In 2004, Massachusetts became the first state
to legalize same-sex marriage; since then, a number
of states and jurisdictions have followed suit. Never-
theless, same-sex marriage is still not legally
recognized in most states.
Although the division of labor for parenting and
household chores in same-sex families tends to be
more egalitarian than among opposite-sex couples,
same-sex couples are not as “genderless” as has
been previously suggested. This equality often
changes as couples transition to parenthood, when
one of the partners usually becomes more involved
in child rearing, assumes more responsibility for
housework, and often becomes the partner in
charge of caring for the health of the children and
seeking health services for them.
PARENTING
Even with the increase in divorce and cohabita-
tion, postponement of marriage, and decline in
childbearing, most North American adults have
children, and most children live with two parents.
In 2011, 64% of families with children were two-
parent, married families and an additional 5%
were two-parent, unmarried families (U.S. Census
Bureau, 2011a). In Canada, in 2011, the level was
comparable: 62% of Canadian families with chil-
dren were married two-parent families, 14% were
two-parent common-law families, and 24% were
lone-parent (single-parent) families (authors’
calculations from Statistics Canada, 2011c). In
2011, 26% of American families were mother-
only families and only 4% were father-only fami-
lies. “Lone-parent families” in Canada increased
from 9% of all families (including those with
no children) in 1971 to about 16% in 2011, in-
cluding 13% lone mothers and 3% lone fathers.
The changes in marriage, cohabitation, and non-
marital childbearing over the past few decades
have had a profound effect on North American
families with children and are changing our
images of parenthood.
This section discusses individuals’ and couples’
transitions into parenthood, beginning with cur-
rent trends in fertility, the increased use of assisted
reproductive technologies (ARTs) to achieve par-
enthood, and trends and patterns in adoption. As
individuals become parents, different types of fam-
ily forms emerge. The section explores single
motherhood, fathering, and child rearing within
cohabitation and same-sex couple families. The
section concludes with a discussion of the impor-
tant role grandparents are playing in rearing and
caring for grandchildren.
Fertility
In the United States and Canada, fertility has ex-
hibited a trend of long-term decline for more than
a century, interrupted by the baby-boom period
and other small fluctuations. In recent decades, fer-
tility rates in most developed countries have fallen
below the level required to replace the population.
Replacement-level fertility refers to the required
number of children each woman in the population
would have to bear on average to replace herself
and her partner, and it is conventionally set at 2.1
children per woman for countries with low mortal-
ity rates. This threshold is set slightly above 2 in
order to account for a negligible rate of childhood
mortality and a small proportion of individuals who
do not survive to their reproductive age (Preston,
Heuveline, & Guillot, 2001).
The U.S. fertility decline has not been very dras-
tic; thus, the United States is an atypical case
among developed countries. Figure 2-1 shows the
trends in fertility rates since the 1930s for the
United States and Canada, respectively. As this
graph shows, both countries experienced a post-
WWII baby boom during the 1950s and 1960s,
Family Demography: Continuity and Change in North American Families 45
3921_Ch02_033-066 05/06/14 10:55 AM Page 45
after which fertility began to decline again. Since
the 1980s, the United States has exhibited fertility
rates close to replacement level. In 2010, the total
U.S. fertility rate was 1.93 children per woman
(Martin et al., 2012). In Canada, however, the fer-
tility decline has been of greater magnitude; in
2010, the fertility rate was 1.63 (Statistics Canada,
2012a). Persistent levels of below replacement fer-
tility have raised concerns regarding population
shrinkage. Fewer births also imply a subsequent
contraction of the working-age population that,
coupled with increases in life expectancy, reduces
the tax base that supports health care and retire-
ment benefits for the aging population (Lee, 2003).
In the United States and Canada, a significant pro-
portion of population growth during recent
decades has come from immigration.
Fertility varies by demographic characteristics.
In the United States, except for Asians, immigrants
tend to exhibit higher fertility rates than the native-
born population. In 2010, native-born women had
on average 1.8 children, whereas foreign-born
women had 2.2 children (U.S. Census Bureau,
2010d). Fertility also varies by race and ethnicity.
In 2010 in the United States, fertility was the high-
est among Hispanic women (2.3), followed by
African Americans (2.0), and the lowest rate was
observed among white and Asian women (1.80)
(U.S. Census Bureau, 2010d). The differences are
greater by educational level. Women with less than
a high school education had on average 2.56 births,
whereas women with a graduate or professional de-
gree had only 1.67 births (U.S. Census Bureau,
2010d).
The causes behind the secular trends in fertility
decline can be grouped into socioeconomic, ideolog-
ical, and institutional factors. Among socioeconomic
factors are the increase in women’s opportunity
costs and the rising cost of rearing children. The
socioeconomic position of women has drastically
changed since the 1960s. Economic changes have
also made it more difficult to maintain a family on
the income of a single earner. Women’s education
and labor force participation increased considerably
during this period. In addition, changes in laws and
civil rights have reduced discriminatory practices
against women. All of these changes have resulted in
increases in women’s wages, although they have not
yet reached parity with men’s. As women’s incomes
and career opportunities have improved, women’s
opportunity costs of not participating in the labor
market have increased, thus reducing women’s fer-
tility intentions. At the same time, higher educational
expectations for children and rising living standards
have substantially increased the costs of raising chil-
dren (Lino, 2012).
Cultural and ideological changes, such as the
growth in individualism and the desire for self-
realization, have decreased the appeal of long-term
commitments, including childbearing (Bianchi
et al., 2012; Cherlin, 2009). The accentuation of
individual autonomy and the rise of feminism have
increased the desirability for more symmetrical
gender roles. However, institutions dealing with
family life still exhibit high levels of gender in-
equality. Equal opportunities for women in educa-
tion and employment are often curtailed within
families as women continue to pay a penalty for
having children in the form of reduced career in-
volvement and income prospects. This asymmetry
accentuates the incompatibility of childbearing and
labor force participation (McDonald, 2000).
In addition, in the 1960s more effective birth con-
trol methods became available, providing couples
with better means to control their fertility. More-
over, favorable attitudes toward nonmarital sex and
cohabitation have also weakened the link between
sex, marriage, and childbearing (Casper & Bianchi,
2002). Thus, most developed countries have experi-
enced a considerable rise in nonmarital births to sin-
gle and cohabitating mothers. In 2010, 41% of all
births in the United States were to unmarried
women, of which 58% were to cohabitating women
(Martin et al., 2012). In Canada, births to unmarried
women have also increased, representing 27.3% of
all births in 2007 (U.S. Census Bureau, 2012).
46 Foundations in Family Health Care Nursing
1930 1940 1950
Replacement
level
1960 1970
Total Fertility Rate for the U.S. and Canada:
1930–2010
1980 1990
U.S.
Canada
2000 2010
4.5
4.0
3.5
3.0
2.5
2.0
1.5
1.0
0.5
0.0
FIGURE 2-1 Total fertility rate for the United States
and Canada: 1930–2010. (Data from Martin et al., 2012;
Statistics Canada, 2011d.)
3921_Ch02_033-066 05/06/14 10:55 AM Page 46
Family Demography: Continuity and Change in North American Families 47
The birth rate for teenagers has decreased sub-
stantially in both countries, although in the United
States this rate is more than twice that observed in
Canada. In Canada in 2008, only 4% of all births
were to women ages 15 to 19, compared with 9%
in the United States in 2010. The birth rate for
teenagers in Canada was 14.3 births per 1,000
women in 2008, down from 26.1 in 1981 (Milan,
2011). The U.S. teenage birth rate for women ages
15 to 19 was 34.3 births per 1,000 women in 2010,
down from 52.2 in 1981 (Martin et al., 2012). The
United States still exhibits one of the highest rates
of teenage pregnancy in the industrialized world.
Nonetheless, women increasingly have been
delaying childbearing since the 1960s; thus, the av-
erage age at first birth has risen in both countries.
In 2010, the average age at first birth in the United
States was 25.4 (Martin et al., 2012). In 2008 in
Canada, the average age at first birth was 28.1, up
from 23.5 in the mid-1960s (Milan, 2011). How-
ever, the onset of fertility varies by race/ethnicity
in the United States. Whereas the average age at
first birth for African American and Hispanic
women was slightly above 23 years in 2010, for
white women it was 26.3. Asian and Pacific Is-
landers exhibited the highest average age at first
birth at 29.1 (Martin et al., 2012). Thus, childbear-
ing for middle-class whites and Asians is increas-
ingly becoming concentrated in the late twenties
and early thirties.
Overall, these trends imply not only that
women are having fewer children, but also that
they are increasingly having children at older
ages. Nurses are more likely to encounter more
educated and mature mothers and pregnant
women. However, as women wait longer to have
their first child, complications in pregnancies and
deliveries will become more common. Moreover,
age-related infertility will be more likely to affect
these women, increasing the rate of involuntary
infertility. As delays in fertility continue, a larger
pool of women approaching the end of their
reproductive years will seek the services of as-
sisted reproductive technology.
Assisted Reproductive
Technologies (ARTs)
Although various definitions have been used for
assisted reproductive technologies (ARTs), the cur-
rent definition used by the U.S. Centers for Dis-
ease Control and Prevention (CDC) is based on the
1992 Fertility Clinic Success Rate and Certification
Act. According to this definition, ARTs include
all fertility treatments in which both eggs and
sperm are handled. In general, ART procedures in-
volve surgically removing eggs from a woman’s
ovaries, combining them with sperm in the labora-
tory, and returning them to the woman’s body or
donating them to another woman. According to
this definition, treatments in which only sperm are
handled are not included (i.e., intrauterine—or
artificial—insemination), nor are procedures in
which a woman takes medications only to stimulate
egg production without the intention of having
eggs retrieved (U.S. Centers for Disease Control
and Prevention, 2012).
ARTs have been used in the United States since
1981 to help women become pregnant, most com-
monly through the transfer of fertilized human
eggs into a woman’s uterus (in vitro fertilization).
Deciding whether to undergo this expensive and
time-consuming treatment can be difficult. World-
wide, an estimated 9% of couples meet the defini-
tion of infertility, with 50% to 60% of them
seeking care (Boivin, Bunting, Collins, & Nygren,
2007). In the United States, approximately 7% of
married couples reported at least 12 months of un-
protected intercourse without conception, while
2% of women reported having visited an infertility-
related clinic within the past year (Chandra,
Martinez, Mosher, Abma, & Jones, 2005). In
Canada, the estimated percentage of couples expe-
riencing infertility in 2010 ranged from 11.5% to
15.7%, depending on the definition of infertility
used. Infertility treatment costs sum up to well over
three billion dollars annually in the United States
(Myers et al., 2008). As women wait longer to have
their first child, the likelihood of age-related infer-
tility increases. Although there is some controversy
about whether the proportion of the population
with self-reported infertility is increasing, stable, or
decreasing, there has been a clear increase in the
use of ARTs (Stephen & Chandra, 2006; Sunderam
et al., 2012).
The number of in vitro fertilization (IVF) cycles
performed in the United States increased from ap-
proximately 30,000 in 1996 (Myers et al., 2008) to
over 147,000 in 2010, resulting in 47,090 live births
(deliveries of one or more living infants) and 61,564
infants (U.S. Centers for Disease Control and Pre-
vention, 2012). Over this time, the proportion of
deliveries in the United States resulting from ARTs
has increased from 0.37% in 1996 to 0.94% in
3921_Ch02_033-066 05/06/14 10:55 AM Page 47
48 Foundations in Family Health Care Nursing
2005. In 2009, ARTs accounted for 1.4% of U.S.
births (Sunderam et al., 2012). In Canada 3,428 ba-
bies were born through ARTs in 2007 (Assisted
Human Reproduction Canada, 2011). ARTs often
result in multiple births, such as twins, triplets, and
so on, which increases health risks for children and
mothers. In the United States and Canada, nearly
30% of all ART births result in multiple births.
Due to high costs and increased health risks, the
Assisted Human Reproduction Canada (AHRC)
agency has set as a goal to reduce the rate of mul-
tiple births resulting from ARTs (AHRC, 2011).
A growing number of same-sex couples seeking
to become parents are also turning to ARTs to
achieve this goal: in the case of lesbians, usually
through the use of a sperm donor and artificial in-
semination; and in the case of gay men, through the
use of an egg donor and/or a surrogate. It is worth
noting that male same-sex couples face greater
challenges than female same-sex couples to become
parents, not only because fertility centers are less
likely to accept male gay patients, but also because
the procedure is more expensive as it involves ob-
taining both an oocyte donor and a gestational sur-
rogate, that is, a woman who will carry the zygote
and take the pregnancy to term (Greenfeld, 2007).
Although data on psychological outcomes of
women who become pregnant after infertility treat-
ment are quite limited, the available data suggest
that women have outcomes as good as, and perhaps
better than, women who get pregnant from spon-
taneous conception. Based on the available litera-
ture, there are no differences in parenting skills
when comparing singleton pregnancies resulting
from ART to spontaneous conceptions (Myers
et al., 2008). In fact, mothers of infants resulting
from ART appear to have better outcomes. By con-
trast, there is some evidence that fathers may do
worse on some scales. The multiple gestations and
preterm births that frequently result with ART
significantly increase stress and depressive symp-
toms, especially for mothers of infants with chronic
disabilities.
Births resulting from ART are more likely to in-
volve multiple births, pregnancy complications,
preterm delivery, and low birth weight, all of which
may pose substantial risks to the health of mothers
and infants. Additionally, children born as a result
of ART experience relatively worse neurodevelop-
mental outcomes, higher rates of hospitalization,
and more surgeries than other children. There is
little evidence, however, that the relatively worse
outcomes for ART babies are a direct result of in-
fertility treatments; infertility treatments are more
likely to be used by couples with a history of
subfertility—difficulty achieving and sustaining
pregnancy without medical assistance—and worse
outcomes typically result for the children of these
couples, irrespective of whether they have received
infertility treatments (Myers et al., 2008).
In sum, family nurses will likely encounter a
growing number of opposite-sex couples seeking
infertility treatment, as well as same-sex couples
who wish to become parents. This process is time
consuming, expensive, and stressful for all of the
parties involved. Unsuccessful attempts to become
pregnant are likely to be met with sorrow, anger,
and regret. Nurses should be aware of the delicate
circumstances surrounding this type of care. They
should also be aware of the heightened risk of mul-
tiple births, potential birth defects, and increased
women’s health risks.
Adoption
Accurate trends on adoption in the United States
are difficult to obtain, but U.S. Census Bureau data
3921_Ch02_033-066 05/06/14 10:55 AM Page 48
indicate that the number of adopted children
increased in the 1990s from about 1.6 million in
1991 to 2.1 million in 2004 and then decreased to
1.4 million in 2009 (Kreider & Ellis, 2011a). Other
data show that in 2007 there were approximately
1.7 million adopted children living in the United
States (Vandivere, Malm, & Radel, 2009). Box 2-2
illustrates the three primary forms of adoption in
the United States: foster care adoption, private
domestic adoption, and international adoption.
According to the U.S. Administration for Chil-
dren and Families, the number of adoptions from
foster care has ranged from 50,000 to 57,000 an-
nually between 2002 and 2011, with some fluctua-
tions and no clear trend (U.S. Department of
Health and Human Services, 2011). In 2007,
661,000 children were adopted from foster care,
representing 37% of all adopted children. Of foster
care–adopted children, 23% were adopted by rela-
tives, 40% were adopted by someone who knew
them before the adoption (including relatives), and
69% were adopted by someone who was previously
their foster parent (Vandivere et al., 2009). Because
these children were removed from their homes due
to abuse or neglect, they are more likely than other
children, and even than those adopted through dif-
ferent means, to have special health care needs—in
2007 54% had special needs.
In 2007, about 677,000 or 38% of adopted chil-
dren were adopted privately from sources other
than foster care. Of these, 41% were adopted by
relatives and 44% were adopted by someone who
knew them before the adoption (including rela-
tives). Almost one-third of these children have spe-
cial health care needs. The majority of children
adopted privately in the United States were placed
with their adoptive family as newborns or when
they were younger than 1 month old (62%).
International adoptions increased from about
15,700 in 1999 to about 23,000 children in 2004.
Since 2004, they have been steadily decreasing to
9,300 in 2011 due to stricter laws and regulations
Family Demography: Continuity and Change in North American Families 49
BOX 2-2
Three Primary Forms of Adoption in the United States
Foster Care Adoption
Children adopted from foster care are those who were
removed from their families due to their families’ inability
or unwillingness to provide appropriate care and were
placed under the protection of the state by the child
protective services system. Public child welfare agencies
oversee such adoptions, although they sometimes
contract with private adoption agencies to perform
some adoption functions.
Private Domestic Adoption
These children were adopted privately from within the
United States and were not part of the foster care system
at any time before their adoption. Such adoptions may
be arranged independently or through private adoption
agencies.
International Adoption
This group includes children who originated from coun-
tries other than the United States. Typically, adoptive
parents work with private U.S. adoption agencies, which
coordinate with adoption agencies and other entities in
children’s countries of origin. Changes in international
adoption laws have made it more difficult to adopt
children from abroad. Starting in 2008, the Hague
Convention on Protection of Children and Co-operation
in Respect of Intercountry Adoption has been regulating
adoptions from several countries. Its purpose is to protect
children and to ensure that placements made are in the
best interests of children. For adoptions from countries
not part of the Hague Convention, U.S. law dictates that
children have to be orphans in order to immigrate into
the United States. The Hague Convention seems to have
contributed to the decrease in international adoptions.
For example, in 2007 24% of all international adoptions
of children under age 18 were from Guatemala, but in
March 2008, the U.S. Department of State announced
that it would not process Guatemalan adoptions until fur-
ther notice, due to concerns about the country’s ability to
adhere to the guidelines of the Hague Convention. Addi-
tionally, in 2008, Guatemala stopped accepting any new
adoption cases (U.S. Department of State, 2011).
Other countries have also implemented stricter regula-
tions for international adoptions. For example, as of May
2007, China enacted a rigorous policy requiring adoptive
parents be married couples between the ages of 30 and
50 with assets of at least $80,000 and in good health
(including not being overweight). In November 2012 a
bilateral adoption agreement between the United States
and Russia increased safeguards for and monitoring of
Russian children adopted by U.S. parents (U.S. Department
of State, 2011). In addition, China and other countries,
such as Russia and Korea, are attempting to promote
domestic rather than international adoption (Lee, 2007;
Voice of Russia World Service in English, 2007).
3921_Ch02_033-066 05/06/14 10:55 AM Page 49
(U.S. Department of State, 2011). Internationally
adopted children make up the smallest group, num-
bering about 444,000 or 25% of all adopted chil-
dren. Of these adopted children, 29% have special
health care needs. More than 7 in 10 adopted chil-
dren in 2011 came from just five countries—China
(28%), Ethiopia (19%), Russia (10%), South Korea
(8%), and the Ukraine (7%). In Canada, interna-
tional adoptions have also slightly decreased from
an average of 2,000 adoptions per year during the
1990s and early 2000s. In 2010, 1,946 children were
adopted from abroad. In the same year, nearly 6 in
10 international adoptions to Canada came from
China (24%), Haiti (9%), the United States (8%),
Vietnam (7%), Ethiopia (6%), and Russia (5%)
(Hilborn, 2011).
Since 2008, the Hague Convention on Protec-
tion of Children and Co-operation in Respect of
Intercountry Adoption has been regulating adop-
tions from approximately 75 countries. The stricter
law adopted by the Hague Convention has proba-
bly contributed to the decline in international
adoption (see Box 2-2). In the past several years,
many countries have changed their adoption re-
quirements, thus making it harder to adopt. All
of these legal changes have reduced the number of
international adoptions in the United States.
Social and demographic changes coupled with
changing laws have altered the context of adoption.
Recent developments in reproductive medicine,
such as intrauterine insemination and in vitro fer-
tilization, seem to have contributed to the decline
in adoption in recent years by reducing the demand
for adoption. At the same time, never-married
mothers have become less likely to put their infants
up for adoption—in 1973, 9% of births were placed
for adoption compared to just 1% in the 1990s and
2000s, reducing the supply of infants for domestic
adoptions (Jones, 2008).
According to a recent study conducted at the
U.S. Department of Health and Human Services,
overall, 87% of adopted children have parents who
said they would “definitely” make the same deci-
sion to adopt their child, knowing everything then
that they now know about their child. More than
90% of adopted children ages 5 and older have par-
ents who perceived their child’s adoption experi-
ence as “positive” or “mostly positive” (Vandivere
et al., 2009).
According to this study, overall, 40% of the
adopted children are in transracial adoptions; either
one or both adoptive parents are of a different race,
culture, or ethnicity than their child. The majority
of adopted children have non-Hispanic white par-
ents but are not themselves non-Hispanic white.
Transracial adoptions are most common for chil-
dren whose families adopted internationally. Over-
all, about half of adopted children are male
(49%)—33% of internationally adopted children
are male, while 57% of children adopted from fos-
ter care are male (Vandivere et al., 2009). Adopted
children are less likely than biological children in
the general population to live in households below
the poverty line (12% compared with 18%). How-
ever, nearly half of children adopted from foster
care (46%) live in households with incomes no
higher than two times the poverty threshold. Over
two-thirds of adopted children (69%) live with two
married parents; they are just as likely to do so
as children in the general population (Vandivere
et al., 2009).
The majority of adoptive children engage in en-
richment activities with their families, and in fact
they are more likely to have some of these positive
experiences than all children in the population
(Vandivere et al., 2009). As youngsters, adopted
children are more likely than all children to be read
to every day (68% compared with 48%), to be sung
to or told stories every day (73% compared with
59%), and to participate in extracurricular activities
as school-age children (85% compared with 81%).
A small percentage of adopted children have par-
ents who report parental aggravation (for example,
feeling the child was difficult to care for, or feeling
angry with the child). Parental aggravation is more
common among parents of adopted children than
among all parents (11% compared with 6%).
This socioeconomic and demographic portrait
of adopted children has implications for family
nursing. First, although most adoptive children
fare well with regard to health, educational
achievement, and social and cognitive develop-
ment, those who are adopted through foster care
are disproportionately disadvantaged. Second, be-
cause most parents of adopted children do not
share with them their genetic endowment and be-
cause the medical histories of the biological par-
ents are often unknown, diagnosis for these
children can be more challenging than for biolog-
ical children. Third, the substantial proportion of
transracial adoptive families requires special atten-
tion. For decades, adoptive parents who were of a
50 Foundations in Family Health Care Nursing
3921_Ch02_033-066 05/06/14 10:55 AM Page 50
different race than their child were taught to be
color blind regarding their adoptive children and
to raise them according to the culture of the par-
ent. More recently, adoption social workers have
encouraged adoptive parents to embrace the
child’s culture of origin and to help their children
develop positive racial and ethnic identities. As
most of these parents are white, however, they may
be unaware of the nuances of the culture the child
is coming from and may not have the capacity to
teach their children how to deal with bias and dis-
crimination (Shiao, Tuan, & Rienzi, 2004). Nurses
should be sensitive to these differences and help
guide the parents in understanding how to help
their children.
Finally, unlike biological families, many adoptive
families emerge out of loss for all members—for
example, foster parents who are not able to have bi-
ological children; biological parents who are relin-
quishing their children; and adoptive children who
are losing or have lost their biological parents. This
unique family form requires an adjustment period
for all of those involved. Separations of adoptive
children from biological parents at birth deprive
children of the bioregulatory channels that exist be-
tween a mother and her baby—from breathing, to
respiration, to heart rate and blood pressure. Tak-
ing away a baby at birth cuts off this regulation and
may cause children to cry more often, become
angry or confused, or behave badly simply because
they do not understand the separation (Verrier,
1993). Nurses should be aware that unusual behav-
iors such as these among adoptive children may not
stem from illness or health-related causes.
Single Mothers
How many single mothers are there? This turns
out to be a more difficult question to answer from
official statistics than it would first appear. Over
time, it is easiest to calculate the number of single
mothers who maintain their own residence. In the
United States between 1950 and 2011, the number
of such single-mother families increased from
1.3 million to 8.7 million (U.S. Census Bureau,
2011c). These estimates do not include single
mothers living in other persons’ households but do
include single mothers who are cohabitating with
a male partner. The most dramatic increase was
during the 1970s, when the number of single-
mother families was increasing at 8% per year. The
average annual rate of increase slowed considerably
during the 1980s and was near 0% after 1994 (Casper
& Bianchi, 2002). By 2011, single mothers who
maintained their own households accounted for 25%
of all families with children, up from 6% in 1950
(U.S. Census Bureau, 2011c). Almost 1.4 million
more single mothers lived in someone else’s house-
hold, bringing the total number of single mothers to
over 10 million (U.S. Census Bureau, 2011c). In
2011 in Canada, there were 1.2 million lone mothers
and 328,000 lone fathers with children of any age liv-
ing with them (Statistics Canada, 2012e).
Single mothers with children at home face a
multitude of challenges. They usually are the pri-
mary breadwinners, disciplinarians, playmates, and
caregivers for their children. They must manage
the financial and practical aspects of a household
and plan for the family’s future. Many mothers
cope remarkably well, and many benefit from
financial support and help from relatives and from
their children’s fathers.
Women earn less than men, on average, and be-
cause single mothers are usually younger and less
educated than other women, they are often at the
lower end of the income curve. Never-married sin-
gle mothers are particularly disadvantaged; they are
younger, less well educated, and less often em-
ployed than are divorced single mothers and mar-
ried mothers. Single mothers often must curtail
their work hours to care for the health and well-
being of their children.
Despite the fact that the majority of American
single mothers are not poor, they are much more
likely to be poor than other parents. Single-parent
families are officially defined as poor if they have
incomes under the poverty line, which for a single
mother with two children translates into an annual
income of less than $18,123 in 2011. Overall, 20%
of U.S. children lived in poverty in 2009. Children
in two-parent families had the lowest rate at 13.3%,
followed by children living in father-only families
at 19.9%. Children in mother-only families had the
highest poverty rate at 38.1%. Poverty and family
structure are highly correlated with race in the
United States. Children in black and Hispanic
single-mother families exhibit the highest poverty
rate at about 45% compared with white children in
two-parent families, who have the lowest rate at
8.6% (Kreider & Ellis, 2011a).
The family income of children who reside with a
never-married single mother is less than one-fourth
Family Demography: Continuity and Change in North American Families 51
3921_Ch02_033-066 05/06/14 10:55 AM Page 51
that of children in two-parent families (Bianchi &
Casper, 2000). Almost three of every five children
who live with a never-married mother are poor.
Mothers who never married are much less likely to
get child support from the father than are mothers
who are divorced or separated. Whereas 43% of di-
vorced mothers with custody of children younger
than 21 received some child support from the chil-
dren’s father, fewer than 25% of never-married
mothers reported receiving regular support from
their child’s father (U.S. Census Bureau, 2010c).
Children who live with a divorced mother tend
to be much better off financially than are children
of never-married mothers. Divorced mothers are
substantially better educated and more often em-
ployed than are mothers who are separated or who
never married. Even so, the average incomes of
families headed by divorced mothers is less than
half that of two-parent families.
In 2010, three million Canadians lived in low
income and about 546,000 or 8.1% of children
younger than 18 lived in low-income families
(Statistics Canada, 2012c). Canadian lone-parent
families with children younger than 18 are much
more likely to have low incomes, and thus, more
likely to be poor (First Call: BC Child and Youth
Advocacy Coalition, 2011). Among children living
in female lone-parent families, 187,000, or 21.8%,
were low income, whereas the incidence of low
income was 5.7% among children living in two-
parent families (Statistics Canada, 2012c).
In the United States, single mothers with children
in poverty are particularly affected by major welfare
reform legislation, such as the Personal Responsibil-
ity and Work Opportunity Reconciliation Act
(PRWORA) (Box 2-3). President Clinton claimed in
his 1993 State of the Union Address that the 1996
law would “end welfare as we know it,” and the
changes embodied in PRWORA—time limits on
welfare eligibility and mandatory job-training re-
quirements, for example—seemed far-reaching
(Hays, 2003). Some argued that this legislation would
end crucial support for poor mothers and their chil-
dren; several high-level government officials resigned
because of the law. Others heralded PRWORA as
the first step toward helping poor women gain con-
trol of their lives and making fathers take responsi-
bility for their children. Many states had already
begun to experiment with similar reforms. The suc-
cess of this program is open to dispute because it has
been and continues to be such a political issue.
Why have mother-child families increased in
number and as a percentage of North American
families? Explanations tend to focus on one of two
trends. First is women’s increased financial inde-
pendence. More women entered the labor force and
women’s incomes increased relative to those of men,
and welfare benefits for single mothers expanded
during the 1960s and 1970s. Women today are less
dependent on a man’s income to support themselves
and their children, and many can afford to live in-
dependently rather than stay in an unsatisfactory
relationship. Second, the job market for men has
tightened, especially for less-educated men. As the
North American economy experienced a restructur-
ing in the 1970s and 1980s, the demand for profes-
sionals, managers, and other white-collar workers
expanded, whereas wages for men in lower-skilled
jobs declined in real terms (Casper & Bianchi, 2002).
Over the past two decades, this pattern has contin-
ued due to technological advances and outsourcing
displacing manufacturing and other lower-skilled
jobs (Bianchi et al., 2012). Men still earn more than
women, on average, but the earnings gap narrowed
steadily between the 1970s and 2000 as women’s
earnings increased and men’s earnings remained flat
or declined. In the past decade, the gender-earnings
gap has been relatively constant because both men’s
and women’s average earnings have stagnated.
In 2011 in the United States, full-time, year-round
female workers earned 77 cents for every dollar
earned by full-time, year-round male workers
(DeNavas-Walt, Proctor, & Smith, 2012).
In the early years of the 20th century, higher mor-
tality rates made it more common for children to live
with only one parent (Uhlenberg, 1996). As declining
death rates reduced the number of widowed single
parents, a counterbalancing increase in single-parent
families occurred because of divorce. For example, at
the time of the 1960 Census, almost one-third of
American single mothers living with children
younger than 18 were widows (Bianchi, 1995). As di-
vorce rates increased precipitously in the 1960s and
1970s, most single-parent families were created
through divorce or separation. Thus, at the end of
the 1970s, only 11% of American single mothers
were widowed and two-thirds were divorced or sep-
arated. In 1978, about one-fifth of single American
mothers had never married but had a child and were
raising that child on their own (Bianchi & Casper,
2000). By 2011, 46.5% of single mothers had never
married (U.S. Census Bureau, 2011k).
52 Foundations in Family Health Care Nursing
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Family Demography: Continuity and Change in North American Families 53
BOX 2-3
Welfare Reform in the United States
Federal and state programs in the United States to aid
low-income families have been transformed during the
past two decades. The 1996 PRWORA was the legislative
milestone at the federal level.
■ PRWORA replaced the Aid to Families With Dependent
Children program, an entitlement for poor families, with
a program of block grants to the states called Temporary
Assistance to Needy Families (TANF).
■ It requires states to impose work requirements on at
least 80% of TANF recipients.
■ It forbids payments to single mothers younger than 18
unless they live with an adult or in an adult-supervised
situation.
■ It set limits of 60 months on TANF for any individual
recipient (and 22 states have used their option to
impose shorter lifetime limits).
■ It gives states more latitude to let TANF recipients earn
money or get child support payments without reduction
of benefits and to use block grants for child care.
Welfare-reform proponents often supported efforts to
“make work pay,” as well as to discourage long-term de-
pendence on welfare. The Earned Income Tax Credit, for
example, was expanded several times during the 1980s
and 1990s and now provides twice as much money
to low-income families, whether single- or two-parent
families. Funding for child care was also expanded during
the decade, though child care remains a problem for
low-income working families in most places.
PRWORA accelerated a decline in welfare caseloads
throughout the country. Because of a concern that former
welfare recipients entering the workforce would lose in-
surance coverage through Medicaid for their children, the
1997 Balanced Budget Act set up the new State Child
Health Insurance Program (SCHIP), providing federal
money to states in proportion to their low-income
population and recent success in reducing the proportion
of uninsured children.
Lack of health insurance remains an important concern
for children in the United States, however. The Census
Bureau estimated that in 2011 about 1 of every 10 chil-
dren in the United States was not covered by any health
insurance (and one in five adults between ages 18 and
64 were uninsured) (DeNavas-Walt et al., 2012).
In 1996, Congress also made the following state-
ments: (1) Marriage is the foundation of a successful
society. (2) Marriage is an essential institution of a suc-
cessful society which promotes the interests of children.
To support healthy marriage, in conjunction with TANF,
the Deficit Reduction Act of 2005 was implemented pro-
viding $150 million per year of funding to support healthy
marriage and responsible fatherhood promotion. The goal
of the Healthy Marriage Initiative (HMI) is to help couples,
“who have chosen marriage for themselves, gain greater
access to marriage education services, on a voluntary
basis, where they can acquire the skills and knowledge
necessary to form and sustain a healthy marriage”
(U.S. Department of Health and Human Services, 2012).
Key requirements of the law specify that HMI funds
may be used for competitive research and demonstra-
tion projects to test promising approaches to encourage
healthy marriages and promote involved, committed,
and responsible fatherhood by public and private entities
and also for providing technical assistance to states and
tribes:
■ Applicants for funds must commit to consult with
experts in domestic violence; applications must describe
how programs will address issues of domestic violence
and ensure that participation is voluntary.
■ Healthy marriage promotion awards must be used for
eight specified activities, including marriage education,
marriage skills training, public advertising campaigns,
high school education on the value of marriage, and
marriage mentoring programs.
Not more than $50 million each year may be used
for activities promoting fatherhood, such as counseling,
mentoring, marriage education, enhancing relationship
skills, parenting, and activities to foster economic stability
(U.S. Department of Health and Human Services, 2012).
The remarkable increase in the number of single-
mother households with women who have never
married was driven by a dramatic shift to childbear-
ing outside marriage. The number of births to
unmarried women grew from less than 90,000
per year in 1940 to nearly 1.6 million per year in
2010 (Martin et al., 2012). Less than 4% of all
births in 1940 were to unmarried mothers com-
pared with 41% in 2010. The rate of nonmarital
births—the number of births per 1,000 unmarried
women—increased from 7.1 in 1940 to 47.6 in
2010. The nonmarital birth rate peaked in 1994 at
46.2, leveled out in the latter 1990s, and has in-
creased slightly since the mid-2000s (Bianchi &
Casper, 2000; Martin et al., 2012). Births to unmar-
ried women have increased in Canada as well, from
12.8% in 1980 to 27.3% of all births in 2007 (U.S.
Census Bureau, 2012).
3921_Ch02_033-066 05/06/14 10:55 AM Page 53
The proportion of births that occur outside mar-
riage is even higher in some European countries
than in the United States and Canada. But unmar-
ried parents in European countries and Canada are
more likely to be living together with their biolog-
ical children than are unmarried parents in the
United States (Heuveline, Timberlake, & Fursten-
berg, 2003). In the United States, the tremendous
variation in rates of unmarried childbearing among
population groups suggests that there may be a con-
stellation of factors that determine whether women
have children when they are not married. In 2010,
the percentage of births to unmarried mothers was
the highest for blacks at 73%, followed by Native
Americans (66%), Hispanics (53%), and white non-
Hispanics (29%). Asian and Pacific Islanders re-
ported the lowest percentage at 17% (Martin et al.,
2012, Tables 13 and 14). Overall, 25% of all family
groups with children under 18 are maintained by
single mothers. The percentage of mother-only
family groups is much higher for African American
families (52%) than for Hispanic (28%), white
non-Hispanic (19%), and Asian (12%) families
(U.S. Census Bureau, 2011m).
Single-mother families present challenges for
family health care nurses providing care to this vul-
nerable group. Single mothers today are younger and
less educated than they were a few decades ago. This
presents problems because these mothers have less
experience with the health care system and are likely
to have more difficulty reading directions, filling out
forms, communicating effectively with doctors and
nurses, and understanding their care instructions. In
the U.S., these mothers are also more likely to be
poor and uninsured, making it less likely they will
seek care and more likely they will not be able to pay
for it. Consequently, when the need arises, these
women are more likely to resort to emergency rooms
for noncritical illnesses and injuries. Time is also in
short supply for single mothers. With the advent of
welfare reform in the United States, more of them are
working, which conceivably reduces the time they
used in the past to care for themselves and their chil-
dren (see Box 2-3). Moreover, although many of these
mothers can rely on their families for help, they are
apt to have tenuous ties with their children’s fathers.
Fathering
A new view of fatherhood emerged out of the fem-
inist movement of the late 1960s and early 1970s.
The new ideal father was a co-parent who was
responsible for and involved in all aspects of his
children’s care. The ideal has been widely accepted
throughout North American society; people today,
as opposed to those in earlier times, believe that
fathers should be highly involved in caregiving
(Hernandez & Brandon, 2002). In the U.S. and
Canada, although mothers still spend nearly twice
as much time caring for children than fathers do,
fathers are spending more time with their children
and are doing more housework than in earlier
decades. In 1998, married fathers in the United
States reported spending an average of 4 hours per
day with their children, compared with 2.7 hours
in 1965 (Bianchi, 2000). In 2010, in Canada, fathers
spent on average 24.4 hours per week (3.5 hours
per day) taking care of children (Statistics Canada,
2012f). These estimates vary by employment status
of both parents and by the children’s age. Fathers
spend more time caring for children when mothers
are employed and when children are young.
At the same time, other trends increasingly re-
move fathers from their children’s lives. When the
mother and father are not married, for example, ties
between fathers and their children often falter. Fa-
thers’ involvement with children differs by marital
status and living arrangements. Among fathers re-
siding with their children, biological married
fathers spend more time with their children, fol-
lowed by fathers in cohabitating relationships. Step-
fathers exhibit the lowest level of involvement
among all resident fathers. Nonresidential fathers
exhibit the lowest involvement in child rearing.
They also provide less financial support to their
children (Hofferth, Pleck, Stueve, Bianchi, & Sayer,
2002). Family demographer Frank Furstenberg
(1998) used the label “good dads, bad dads” to de-
scribe the parallel trends of increased commitment
to children and child rearing on the part of some
fathers at the same time that there seems to be less
connection to and responsibility for children on the
part of other fathers.
Fathers’ involvement is associated with improved
child well-being, including better cognitive devel-
opment, fewer behavioral problems, and better emo-
tional health. However, fathers’ involvement and
child support significantly decrease when parents
separate, especially if the father or mother forms a
new family or if the custodial mother poses obstacles
for a father’s contact with his children (Carlson &
McLanahan, 2010). As a result, union disruption not
only hurts children’s cognitive and emotional well-
being, but also reduces children’s contact with
54 Foundations in Family Health Care Nursing
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fathers, decreasing the parental and financial re-
sources available to children (Amato & Dorius,
2010). Nonetheless, when fathers re-partner and ac-
quire stepchildren, they usually assume new respon-
sibilities and provide for their stepchildren, a fact
that is often overlooked when assessing fathers’
involvement (Hernandez & Brandon, 2002).
How many years do men spend as parents? De-
mographer Rosalind King (1999) estimated the
number of years that American men and women will
spend as parents of biological children or stepchil-
dren younger than 18 if the parenting patterns of the
late 1980s and early 1990s continue throughout
their lives; her estimations have not been refuted to
date. Almost two-thirds of the adult years will be
“child-free” years in which the individual does not
have biological children younger than 18 or respon-
sibility for anyone else’s children. Men will spend,
on average, about 20% of their adulthood living with
and raising their biological children, whereas women
will spend more than 30% of their adult lives, on av-
erage, raising biological children. Whereas women,
regardless of race, spend nearly all of their parenting
years rearing their biological children, men are more
likely to live with stepchildren or a combination of
their own children and stepchildren. Among men in
the United States, white men will spend about twice
as much time living with their biological children as
African American men.
One of the new aspects of the American family
in the last 50 years has been an increase in the num-
ber of single fathers. Between 1950 and 2011, the
number of households with children that were
maintained by an unmarried father increased from
229,000 to 2.2 million (U.S. Census Bureau, 2011c).
During the 1980s and 1990s, the percentage of
single-father households nearly tripled for white
and Hispanic families and doubled for African
American families (Casper & Bianchi, 2002). Re-
cent demographic trends in fathering have changed
the context of family health care nursing. The
growth in single fatherhood and joint custody, to-
gether with the increased tendency for fathers to
perform household chores, means that family health
care nurses are more likely today than in decades
past to be interacting with the fathers of children.
Unmarried Parents Living Together
In the United States, changes in marriage and co-
habitation tend to blur the distinction between one-
parent and two-parent families. The increasing
acceptance of cohabitation as a substitute for mar-
riage, for example, may reduce the chance that a
premarital pregnancy will lead to marriage before
the birth (Casper & Bianchi, 2002). Greater shares
of children today are born to a mother who is not
currently married than in previous decades. Some
of those children are born to cohabitating parents
and begin life in a household that includes both
their biological parents. Data from the 2006–2010
National Survey of Family Growth show that 58%
of recent nonmarital births were to cohabitating
women (Martin et al., 2012). Cohabitation in-
creased for unmarried mothers in all race and ethnic
groups, but especially among whites. Cohabitating
couples account for up to 13% of all single-parent
family groups. In 2011, 13% of white single parents
were actually cohabitating compared with 9% of
black, 13% of Asian, and 19% of Hispanic single
parents (U.S. Census Bureau, 2011d). In 2011 in
Canada, 17% of all families consisted of common-
law couples, and among families with children
under age 14, 14% were common-law families
(Statistics Canada, 2012e).
Same-Sex Couple Families
An increasing number of same-sex couples are now
raising children. In the United States, nearly 17%
of same-sex couples had children in 2010 (author’s
own calculations based on Lofquist et al., 2012). In
Canada, 9.4% of same-sex couples were raising chil-
dren in 2011 (Statistics Canada, 2012e). Same-sex
couples, especially gay male couples, face consider-
able obstacles and need to overcome negative public
attitudes to become parents (Biblarz & Savci, 2010).
Female couples are more likely than male couples
to be parents (Statistics Canada, 2012e). Many
same-sex couples bring children into their house-
holds from previous heterosexual relationships; oth-
ers become parents through the use of assisted
reproductive technology and surrogacy, yet an in-
creasing number of them become parents through
adoption as same-sex couples obtain legal adoption
rights (Biblarz & Savci, 2010; Greenfeld, 2007).
Although some people have raised concerns
about the parenting styles of same-sex parents and
the potential negative effect for children’s out-
comes and well-being, recent research has found
that, for the most part, the parental skills of same-
sex couples are comparable to if not better than
those of heterosexual couples (Biblarz & Savci,
2010). This finding is partly explained by the fact
Family Demography: Continuity and Change in North American Families 55
3921_Ch02_033-066 05/06/14 10:55 AM Page 55
that although many same-sex couples are very
eager to become parents, they face several obstacles
that require them to invest more time, money, and
effort to achieve this goal. Their higher initial in-
vestments make them more likely to devote a great
deal of time to their children when they finally
become parents (Biblarz & Savci, 2010).
Research on children’s outcomes has focused on
different dimensions of well-being, including psy-
chological well-being, emotional development, so-
cial behavior, and school performance. Overall,
these studies have found that children of same-sex
parents fare relatively as well, if not better, com-
pared with children raised by heterosexual couples.
The gender of the child is an important moderat-
ing factor. Sons of same-sex couples are more likely
to experience disapproval from their peers and face
greater homophobic teasing than girls; boys may
be at greater risk of experiencing emotional dis-
tress. This effect seems to depend on the level of
social tolerance in their surrounding environments
(Biblarz & Savci, 2010).
Nurses and health workers should be aware that
same-sex couples often face particular challenges
to safeguarding their well-being and that of their
children. Although children raised by same-sex
couples generally exhibit similar outcomes and lev-
els of well-being, these children may be more sen-
sitive to judgmental attitudes of individuals with
whom they interact, including health workers.
Stepfamilies
Stepfamilies are formed when parents bring to-
gether children from a previous union. By contrast,
remarriages or cohabitating unions in which nei-
ther partner brings children into the marriage are
conceptualized and measured similarly to first mar-
riages. The U.S. Census Bureau uses the term
blended families to denote families with children that
are formed when remarriages occur or when chil-
dren living in a household share only one or no
biological parents. The presence of a stepparent,
stepsibling, or half-sibling designates a family as
blended; these families can include adoptive chil-
dren who are not the biological child of either par-
ent if there are other children present who are not
related to the adoptive child. In 2009, 13.3% of
households with children under 18 were blended-
family households, numbering 5.3 million (Kreider
& Ellis, 2011a). Almost 16% of U.S. children
(11.7 million) lived in blended families in 2009.
Blended families were the least common among
Asian children (7%) and the most common among
black and Hispanic children (17% each). Although
the number of children living in blended families
has increased by almost 2 million since 1991, the
percentage increase has been negligible (from 15%
to 16%) (Furukawa, 1994; Kreider & Ellis, 2011a).
In 2011, the Census of Population in Canada iden-
tified stepfamilies for the first time. Nearly 13% of
couple families with children were stepfamilies, and
almost 10% of children aged 14 and under were
living in stepfamilies in 2011 (Statistics Canada,
2012g).
Parental and financial responsibilities for biolog-
ical parents are upheld by law, customs, roles, and
rules that provide a cultural map of sorts for parents
to follow in raising their children. Because no such
map is available for stepfamilies, stepparents’ roles,
rules, and responsibilities must be defined, negoti-
ated, and renegotiated by stepparents. Through
these negotiations, many different types of step-
families are formed, resulting in a variety of con-
figurations and different patterns of everyday
living. The ambiguity surrounding roles in step-
families and the lack of a shared family history and
kinship system provide opportunities to build new
traditions and family rituals; however, they also
open the door for greater conflict. Consider the
following scenarios.
When asked by researchers, members of families
who are all related by either blood or partnership
(marriage or cohabitation) can very easily tell you
and agree upon who is in their family. By contrast,
members within stepfamilies often do not share a
common definition of who is included in their fam-
ily. Common omissions include stepchildren, bio-
logical children not living in the household,
biological parents not living in the household, and
stepparents (Furstenberg & Cherlin, 1991). Even
biological siblings can have different ideas regarding
who they consider to be family members depending
on the degree of closeness they feel toward steppar-
ents, biological parents, biological siblings, half-
siblings, and stepsiblings, especially if the biological
siblings are living in different households; a girl liv-
ing with her biological mother and stepfather may
consider her brother living with his biological father
and a stepmother as a separate family.
Negotiations must occur with ex-spouses or ex-
partners, as well as with former in-laws. Researchers
56 Foundations in Family Health Care Nursing
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have found that the ex-spouse relationship can play
an important role in the well-being of stepfamilies
(Golish, 2003) and may affect the relationship be-
tween the new stepparents, especially in the begin-
ning of the relationship. Couples’ relationships
in stepfamilies and remarriages are informed and
shaped by experiences in previous unions, leading
to increased expectations in the remarriage. Remar-
ried women expect and have more say in decision
making than women in first marriages. In stepfam-
ilies, the division of labor in the household is more
egalitarian between spouses, as are economic roles
and responsibilities (Allen, Baucom, Burnett,
Epstein, & Rankin-Esquer, 2001).
Step-relationships in particular are often weak
or ambivalent, and stress arises around various is-
sues such as perceptions of playing favorites, or
jealousy among biological children, of former
spouses, and of stepchildren toward stepparents.
These tensions arise because in some families step-
parents are not viewed by stepchildren as real par-
ents (Furstenberg & Cherlin, 1991). The level of
conflict also depends on the age of children, in-
creasing as children approach adolescence. Unlike
in biological families where the role of parent
emerges with the birth of the child (ascribed), step-
parent roles must be earned (achieved). As a result,
discipline in stepfamilies is often a problem. Addi-
tionally, it is more difficult to be a stepparent than
a biological parent because new family cultures are
being developed.
Like children growing up in single-parent fam-
ilies, children with stepparents have lower levels of
well-being than children growing up with biologi-
cal parents (Coleman, Ganong, & Fine, 2000).
Thus, it is not simply the presence of two parents,
but the presence of two biological parents that
seems to promote children’s healthy development.
Despite these challenges, positive changes can
occur when stepfamilies are formed. For example,
a stepfather’s income can compensate for the neg-
ative economic slide that tends to occur for di-
vorced mothers, and a stepparent can alleviate the
demands of single parenting (Smock, Manning, &
Gupta, 1999).
Because stepfamilies comprise a significant pro-
portion of families with children, nurses are likely
to deal with parents whose roles and responsibili-
ties are not well defined and with children who
have behavioral problems, especially among re-
cently formed blended families. Obtaining legal
authorization for medical procedures can be chal-
lenging when legal obligations are unclear. Family
nurses should take care to identify which parent(s)
have legal responsibility for medical decision mak-
ing. Health care workers should be aware that they
may also need to notify nonresidential parents
when their children require medical attention as
these parents may share the legal right to make
medical decisions.
Grandparents
One moderating factor in children’s well-being in
single-parent families can be the presence of grand-
parents in the home. Although the image of single-
parent families is usually that of a mother living on
her own and trying to meet the needs of her young
child or children, many single mothers live with
their parents. For example, in the United States in
2011, about 12% of children of single mothers
lived in the homes of their grandparents compared
with 8% of children of single fathers (U.S. Census
Bureau, 2011g). An additional 5.2% of children of
single mothers had a grandparent living with them
compared with 4.7% of children of single fathers.
This is a snapshot at one point in time, however. A
much higher percentage of single mothers (36%)
live in their parents’ home at some point before their
children are grown. African American single moth-
ers with children at home are more likely than are
others to live with a parent at some time.
Several studies have shown that the presence
of grandparents has beneficial effects on chil-
dren’s outcomes and can buffer some of the dis-
advantages of living in a single-parent family
(DeLeire & Kalil, 2002). This beneficial effect,
however, seems to be more pronounced among
whites than among African Americans, probably
because white grandparents in the United States
have more education and resources than black
grandparents (Dunifon & Kowaleski-Jones, 2007).
The involvement of grandparents in the lives of
their children has even become an issue for court
cases, as there have been several rulings in recent
years on grandparents’ visitation rights. The 2000
U.S. Census included a new set of questions on
grandparents’ support of grandchildren. Children
whose parents cannot take care of them for one
reason or another often live with their grandpar-
ents. In 1970, 2.2 million, or 3.2% of all American
children, lived in their grandparents’ households.
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3921_Ch02_033-066 05/06/14 10:55 AM Page 57
By 2011, this number increased to nearly 5 million,
or 6.6% of all American children (U.S. Census
Bureau, 2011f). Since the Great Recession in
2008 the number of children living with grand-
parents increased by 14%, from 4.3 million in
2008 to nearly 5 million in 2011. In 2011 in
Canada, 4.8% of children aged 0 to 14 resided
with at least one grandparent, up from 3.3% in
2001 (Statistics Canada, 2012e). In addition, in
2010 in the United States, grandparents were the
regular child care providers for 15% of grade-
schoolers and 23% of preschoolers (U.S. Census
Bureau, 2010a, 2010b).
The prevalence of grandparent families is a re-
sult of demographic factors, socioeconomic con-
ditions, and cultural norms. Increases in life
expectancy have expanded the supply of potential
kin support across generations, resulting in more
multigenerational households. At the same time,
changes in work and family life have increased par-
ents’ need for child care, which, coupled with
pressing economic circumstances, has made multi-
generational households a strategic symbiotic
arrangement, especially among single-mother,
low-income, and immigrant families (Glick & Van
Hook, 2002). Grandparents often provide finan-
cial, emotional, child care, and residential support
and, in turn, receive emotional and physical sup-
port (Bengtson, Giarrusso, Mabry, & Silverstein,
2002). Nonetheless, after practical and economic
factors are taken into account, racial and ethnic
differences in the prevalence of grandparent
households remain. Strong kinship ties and family
norms also seem to explain the prevalence of
grandparent households, especially among African
American, Native American, Hispanic, and immi-
grant families (Florian & Casper, 2011; Haxton &
Harknett, 2009). Thus, norms stressing familial
obligations may also be an important factor ex-
plaining differences in the formation of grandpar-
ent families.
Emerging research reveals that grandparents
play an important role in multigenerational house-
holds, which is at odds with the traditional image of
grandparents as family members who themselves
require financial and personal support. Although
early studies assumed that financial support flowed
from adult children to their parents, more recent
research suggests that the more common pattern is
for parents to give financial support to their adult
children (Bengtson, 2001; Bianchi et al., 2008). In
multigenerational households, it is more common
for adult children and grandchildren to move into
a house that grandparents own or rent. In 2007 in
the United States, 64% of multigenerational house-
holds were headed by grandparents (Florian &
Casper, 2011). Nearly 37% of all the grandparent-
maintained families were skipped generation, that
is, grandparents living with their grandchildren
without the children’s parents (authors’ calculations
based on data from U.S. Census Bureau, 2011f).
Nearly 3.1% or 413,490 of all households in
Canada contained a grandparent in 2011. Of these
households, 53% also contained both parents, 32%
contained a lone parent (mostly the mother), and
12% were skipped-generation households com-
prised of children residing with their grandparents
without a parent (Statistics Canada, 2012e).
Grandparents who own or rent homes that in-
clude grandchildren and adult children are younger,
healthier, and more likely to be in the labor force
than are grandparents who live in a residence owned
or rented by their adult children. Grandparents who
maintain multigenerational households are also bet-
ter educated (more likely to have at least a high-
school education) than are grandparents who live in
their children’s homes (Casper & Bianchi, 2002).
Nevertheless, supporting grandchildren can drain
grandparents’ resources. A recent study indicated
that grandfathers who are primary caretakers of
grandchildren are at higher risk of experiencing
poverty if they are in a skipped-generation house-
hold, are ethnic minorities, or are not married
(Keene, Prokos, & Held, 2012).
The structure of grandparent households differs
by nativity. Although co-residential grandparent
families are more common among immigrant fam-
ilies, immigrant grandparent families are less likely
to be maintained by grandparents and less likely to
be skipped generation. Thus, while the flow of sup-
port in native-born multigenerational families
more often runs from older to younger genera-
tions, in immigrant grandparent families support
more often flows from adult children to their older
parents (Florian & Casper, 2011).
Parents who support both dependent children
and dependent parents have been referred to as the
“sandwich” generation, because they provide eco-
nomic and emotional support for both the older
and younger generations. Although grandparents
in parent-maintained households tend to be older,
in poorer health, and not as likely to be employed,
58 Foundations in Family Health Care Nursing
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many are in good health and are, in fact, working
(Bryson & Casper, 1999). These findings suggest
that, at the very least, the burden of maintaining a
co-residential “sandwich family” household may be
somewhat overstated in the popular press. Many
of the grandparents who are living in the houses of
their adult children are capable of contributing
to the family income and helping with the supervi-
sion of children.
Many grandparents step in to assist their chil-
dren in times of crisis. Some provide financial
assistance or child care, whereas others are the pri-
mary caregivers for their grandchildren. Although
grandmothers comprise the majority of grandpar-
ent caregivers, a sizable number of grandfather
caregivers exist who are likely to experience more
challenges than grandmothers as primary care-
givers (Keene et al., 2012).
The recent increase in the numbers of grand-
parents raising their grandchildren is particularly
salient to health care providers because both
grandparents and grandchildren in this situation
often suffer significant health problems (Casper
& Bianchi, 2002). Researchers have documented
high rates of asthma, weakened immune systems,
poor eating and sleeping patterns, physical dis-
abilities, and hyperactivity among grandchildren
being raised by their grandparents (Kelley, Whitley,
& Campos, 2011; Minkler & Odierna, 2001).
Grandparents raising grandchildren tend to be in
poorer health than their counterparts. They have
higher levels of stress, higher rates of anxiety and
depression, poorer self-rated health, and more
multiple chronic health problems, especially if the
grandchildren exhibit behavioral problems
(Leder, Grinstead, & Torres, 2007). Other studies
suggest, however, that these negative outcomes
may not necessarily be a result of caring for
grandchildren; instead, they may reflect grandpar-
ents’ preexisting health conditions and economic
circumstances before they began to raise their
grandchildren (Hughes, Waite, LaPierre, & Luo,
2007). It is important to keep in mind that, al-
though many of the grandparents who live in their
adult children’s homes are in good health, some
of these grandparents require significant care.
Nurses should also be aware that there are also
adult children who provide care for their parents
who are not living with them. Adults who provide
care for both generations are likely to face both
time and money concerns.
SUMMARY
Families change in response to economic conditions,
cultural change, and shifting demographics, such as
the aging of the population and immigration. North
America has gone through a particularly tumultuous
period in the last few decades, resulting in rapid
changes in family structure, functions, and processes.
Families have grown more diversified.
■ More single-mother families, single-father
families, same-sex parent families, and fami-
lies with both parents in the labor force exist
today than in the past. This translates into
less time for parents to take care of the health
needs of family members.
■ Single mothers may find it particularly chal-
lenging to meet the health care needs of their
families because they tend to have the least
time and money to do so.
■ More fathers are taking responsibility for
being primary caretakers of their children
and will be more likely than in the past to be
the parent with whom nurses will interact.
■ Changes in childbearing behaviors have also
altered family life.
■ Persistent levels of below replacement fertil-
ity in Canada have raised concerns about the
future contraction of the population, which
would reduce the tax base to support children
and the growing number of senior citizens.
■ As more couples delay childbearing, they are
more likely to seek assistance to conceive
from health care providers.
■ The growing number of same-sex couples
who aspire to become parents has further
increased the demand for assisted reproduc-
tive technology.
■ Nurses should be aware that this is a stressful
time in families’ lives, as more adults and
children live in nontraditional family forms.
■ Nurses also should be aware that the roles of
parents and responsibility for children in
these households may be ambiguous.
■ Many North American families adopt
children. These children are likely to face a
period of adjustment and are also more likely
than other children to have special health
care needs.
■ More grandparents are raising their grand-
children, and these grandchildren may suffer
Family Demography: Continuity and Change in North American Families 59
3921_Ch02_033-066 05/06/14 10:55 AM Page 59
from more health problems compared with
other children.
■ Many families maintained by grandparents
are in poverty, and many of the grandparents
in these families suffer from poor health
themselves. Nurses will increasingly be likely
to provide care to grandparent families, and
they should be aware of the unique health
and financial challenges these families face.
■ As mortality rates at older ages continue to
improve, and as baby boomers move into
their retirement years, the proportions of the
population of elderly persons will continue to
increase. This demographic shift will in-
crease the need for nurses who specialize in
caring for elderly persons.
■ More adults will have children and parents
for whom they must care, increasing the
need for care in both directions, that of the
younger and the older.
■ Working with health care needs of both gen-
erations will be a challenge for health care
professionals, especially nurses who are on
the front line in most health care systems.
■ Today, more North Americans come from
other countries than in the past.
■ Health care providers will be serving a more
ethnically and culturally diverse population.
■ Many of these individuals speak a language
other than English.
■ Economics and family relationships remain
intertwined. Family issues growing in impor-
tance include balancing paid work with child
rearing, income inequality between men and
women, fathers’ parenting roles, the expected
increase in the number of frail elderly persons,
and intergenerational relationship changes
due to the increase in life expectancy.
■ The Great Recession has put economic strain
on many families, increasing the likelihood of
stress-related illness and decreasing the abil-
ity to afford appropriate care.
Families have been amazingly adaptive and re-
silient in the past; one would expect them to be so
in the future.
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2012. Washington, DC: U.S. Government Printing Office.
Jacobs, J., & Gerson, K. (2004). The time divide: Work, family, and
gender inequality. Cambridge, MA: Harvard University Press.
Kennedy, S., & Bumpass, L. (2008). Cohabitation and children’s
living arrangements: New estimates from the United States.
Demographic Research, 19(47), 1663–1692.
McLanahan, S. (2004). Diverging destinies: How children are
faring under the second demographic transition. Demography,
41(4), 607–627.
McLanahan, S. (2009). Fragile families and the reproduction of
poverty. Annals of the American Academy of Political and Social
Science, 621, 111–131.
National Center for Health Statistics. (2001). Healthy people 2000
final review. Hyattsville, MD: Public Health Service.
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policy, and economic inequality in twenty-one countries. New York,
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Contacts
■ Child Trends: www.childtrends.org
■ Designing New Models for Explaining Family Change and
Variation: www.soc.duke.edu/~efc/
■ Federal Interagency Forum on Aging-Related Statistics:
www.agingstats.gov
■ Federal Interagency Forum on Child and Family Statistics:
www.childstats.gov
■ Fragile Families and Child Wellbeing Study: www.fragilefamilies.
princeton.edu/
■ Kaiser Commission on Medicaid and the Uninsured: www.kff.org
■ Kids Count: The Annie E. Casey Foundation: www.aecf.org/
kidscount
64 Foundations in Family Health Care Nursing
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■ National Center for Health Statistics, U.S. Department of Health
and Human Services, Centers for Disease Control and Prevention:
www.cdc.gov/nchs
■ National Institute on Aging, National Institutes of Health:
www.nia.nih.gov
■ National Center for Marriage and Family Research: ncfmr.bgsu.edu/
■ National Institute of Child Health and Human Development,
National Institutes of Health: www.nichd.nih.gov
■ The National Longitudinal Study of Adolescent Health:
www.cpc.unc.edu/projects/addhealth
■ Population Reference Bureau: www.prb.org
■ Statistics Canada/Statistique Canada: www.statcan.gc.ca
■ U.S. Census Bureau: www.census.gov
■ Welfare, Children, & Families: A Three City Study:
web.jhu.edu/threecitystudy/index.html
Family Demography: Continuity and Change in North American Families 65
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67
Theoretical Foundations
for the Nursing of Families
c h a p t e r 3
Joanna Rowe Kaakinen, PhD, RN
Shirley May Harmon Hanson, PhD, PMHNP/ARNP, FAAN, CFLE, LMFT
C r i t i c a l C o n c e p t s
■ Theories inform the practice of nursing. Practice informs theory and research. Theory, practice, and research are
interactive, and all three are critical to the profession of nursing and family care.
■ The major purpose of theory in family nursing is to provide knowledge and understanding that improves the quality
of nursing care of families.
■ By understanding theories and models, nurses are prepared to think more creatively and critically about how health
events affect family clients. Theories and models provide different ways of comprehending issues that may be
affecting families, and offer choices for action.
■ The theoretical/conceptual frameworks and models that provide the foundations for nursing of families have evolved
from three major traditions and disciplines: family social science, family therapy, and nursing.
■ No single theory, model, or conceptual framework adequately describes the complex relationships of health events
on family structure, function, and process.
■ Nurses who use an integrated theoretical approach build on the strengths of families in creative ways. Nurses
who use a singular theoretical approach to working with families limit the possibilities for families they serve. By
integrating several theories, nurses acquire different ways to conceptualize problems, thus enhancing thinking
about interventions.
By understanding theories and models, nurses are
prepared to think creatively and critically about
how health events affect the family client. The re-
ciprocal or interactive relationship between theory,
practice, and research is that each aspect informs
the other, thereby expanding knowledge and nurs-
ing interventions to support families. Theories and
models extend thinking to higher levels of under-
standing problems and circumstances that may be
affecting families and, thereby, offer more choice
and options for nursing interventions.
Currently, no single theory, model, or concep-
tual framework adequately describes the complex
relationships of family structure, function, and
process. Nor does one theoretical perspective give
nurses a sufficiently broad base of knowledge and
understanding to guide assessment and interven-
tions with families. No one theoretical perspective
3921_Ch03_067-104 05/06/14 10:56 AM Page 67
is better, more comprehensive, or more correct
than another (Doane & Varcoe, 2005; Kaakinen &
Hanson, 2010). The goal for nurses is to have a
deep understanding of the stresses that families ex-
perience when their family clients have a health
event and to support and implement family inter-
ventions based on theoretical perspectives that best
match the needs identified by the family.
Many theoretical approaches exist to under-
standing families. The purpose of this chapter is to
demonstrate how families who have members
experiencing a health event are conceptualized dif-
ferently depending on the theoretical perspective.
In this chapter, nurses seek different data depending
on which theory is being used, both to understand
the family experience and to determine the inter-
ventions offered to the family to help bring them
back to a state of stability.
RELATIONSHIP BETWEEN THEORY,
PRACTICE, AND RESEARCH
In nursing, the relationship of theory to practice
constitutes a dynamic feedback loop rather than a
static linear progression. Theory, practice, and re-
search are mutually interdependent. Theory grows
out of observations made in practice and is tested
by research; then tested theory informs practice,
and practice, in turn, facilitates the further refine-
ment and development of theory. Figure 3-1
depicts the dynamic relationship between theory,
practice, and research.
Theories do not emerge all at once; they build
slowly over time as data are gathered through prac-
tice, observation, and analysis of evidence. Relating
together the various concepts that emerge from
observation and evidence occurs through a pur-
poseful, thoughtful reasoning process. Inductive
reasoning is a process that moves from specific
pieces of information toward a general idea; it is
thinking about how the parts create the whole. De-
ductive reasoning goes in the opposite direction from
inductive reasoning. Deductive reasoning is where
the general ideas of a given theory generate more
specific questions about what filters back into the
cycle; it helps refine understanding of the theory
and how to apply the theory to practice (Smith &
Hamon, 2012; White & Klein, 2008).
Theories are designed to make sense of the
world, to show how one thing is related to another
and how together they make a meaningful pattern
that can predict the consequences of certain clus-
ters of characteristics or events. Theories are ab-
stract, general ideas that are subject to rules of
68 Foundations in Family Health Care Nursing
This chapter begins with a brief review of the
components of a theory and how the components
contribute to the nursing of families. It then pres-
ents five theoretical approaches for working with
families, ranging from a broader to a more specific
perspective:
■ Family Systems Theory
■ Developmental and Family Life Cycle Theory
■ Bioecological Theory
■ Chronic Illness Framework
■ Family Assessment and Intervention Model
The chapter utilizes a case study of a family with
a member who is experiencing progressive multiple
sclerosis (MS) to demonstrate these five different
theoretical approaches to nursing care.
THEORY
(Generalities)
PRACTICEInductive
Reasoning
RESEARCH
(Specifics)
Deductive
Reasoning
FIGURE 3-1 Relationship between theory, practice, and
research. (Adapted from Smith, S. R., Hamon, R. R., Ingoldsby,
B. B., & Miller, J. E. [2008]. Exploring family theories [2nd ed.].
New York, NY: Oxford University Press.)
3921_Ch03_067-104 05/06/14 10:56 AM Page 68
organization. Theories provide a general frame-
work for understanding data in an organized way,
as well as showing us how to intervene. We live in
a time when tremendous amounts of information
are readily available and quickly accessible in mul-
tiple forms. Therefore, theories provide ways to
transform this huge volume of information into
knowledge and to integrate/organize the informa-
tion to help us make better sense of our world
(White, 2005). Ideally, nursing theories represent
logical and intelligible patterns that make sense of
the observations nurses make in practice and en-
able nurses to predict what is likely to happen to
clients (Polit & Beck, 2011). Theories can be used
as a level of evidence on which to base nursing
practice (Fawcett & Desanto-Madeya, 2012). The
major function of theory in family nursing is
to provide knowledge and understanding that
improves nursing services to families.
Most important, theories explain what is hap-
pening; they provide answers to “how” and “why”
questions, help to interpret and make sense of phe-
nomena, and predict or point to what could happen
in the future. All scientific theories use the same
components: concepts, relationships, and propositions.
We will discuss hypotheses and conceptual models
as well.
Concepts, the building blocks of theory, are words
that create mental images or abstract representa-
tions of phenomena of study. Concepts, or the
major ideas expressed by a theory, may exist on a
continuum from empirical (concrete) to abstract
(Powers & Knapp, 2010). The more concrete the
concept, the easier it is to figure out when it applies
or does not apply (White & Klein, 2008). For ex-
ample, one concept in Family Systems Theory is
that families have boundaries. A highly abstract
aspect of this concept is that the boundary reflects
the energy between the environment and the sys-
tem. A more concrete aspect of this concept is that
families open or close their boundaries in times of
stress.
Propositions are statements about the relationship
between two or more concepts (Powers & Knapp,
2010). A proposition might be a statement such as
the following: Families as a whole influence the
health of individual family members. The word
influence links the two concepts of “families as a
whole” and “health of individual family members.”
Propositions denote a relationship between the
subject and the object. Propositions may lead to
hypotheses. Theories are generally made up of sev-
eral propositions that emphasize the relationships
among the concepts in that specific theory.
A hypothesis is a way of stating an expected rela-
tionship between concepts or an expected proposi-
tion (Powers & Knapp, 2010). The concepts and
propositions in the hypothesis are derived from and
driven by the original theory. For example, using
the concepts of family and health, one could hy-
pothesize that there is an interactive relationship
between how a family is coping and the eventual
health outcome of family members. In other words,
the family’s ability to cope with stress affects the
health of individual family members and, in turn,
the health of this individual family member influ-
ences the family’s ability to cope. This hypothesis
may be tested by a research study that measures
family coping strategies and family members’ health
over time and that uses statistical procedures to look
at the relationships between the two concepts.
A conceptual model is a set of general propositions
that integrate concepts into meaningful configura-
tions or patterns (Fawcett & Desanto-Madeya,
2012). Conceptual models in nursing are based on
the observations, insights, and deductions that com-
bine ideas from several fields of inquiry. Conceptual
models provide a frame of reference and a coherent
way of thinking about nursing phenomena. A con-
ceptual model is more abstract and more compre-
hensive than a theory. Like a conceptual model, a
conceptual framework is a way of integrating con-
cepts into a meaningful pattern, but conceptual
frameworks are often less definitive than models.
They provide useful conceptual approaches or ways
in which to look at a problem or situation, rather
than a definite set of propositions.
In this chapter, the terms conceptual model or
framework and theory or theoretical framework are
often used interchangeably. In part, that is because
no single theoretical base exists for the nursing of
families. Rather, nurses typically draw from many
theoretical conceptual foundations using a more
pluralistic and eclectic approach. The interchange-
able use of these various terms reflects the fact that
there is considerable overlap among ideas in
the various theoretical perspectives and conceptual
models/frameworks and that many “streams of
influence” are important for family nurses to incor-
porate into practice. As might be expected, a
substantial amount of cross-fertilization among
disciplines has occurred, such as between social
Theoretical Foundations for the Nursing of Families 69
3921_Ch03_067-104 05/06/14 10:56 AM Page 69
science and nursing, and concepts originating in
one theory or discipline have been translated into
similar concepts for use in another discipline. Cur-
rently, no one theoretical perspective gives nurses
a sufficiently broad base of knowledge and under-
standing to guide assessment and interventions
with families.
THEORETICAL AND CONCEPTUAL
FOUNDATIONS FOR THE NURSING
OF FAMILIES
Nursing is a scientific discipline; thus, nurses are
concerned about the relationships between ideas
and data. Nurse scholars explain empirical observa-
tions by creating theories, which can be used as
evidence in evidence-based practice (Fawcett &
Garity, 2008). Nurse researchers investigate and
test the models and relationships. Nurses in practice
use theories, models, and conceptual frameworks to
help clients achieve the best outcomes (Kaakinen &
Hanson, 2010). In nursing, evidence, in the form of
theory, is used to explain and guide practice. The
theoretical foundations, theories, and conceptual
models that explain and guide the practice of nurs-
ing families have evolved from three major tradi-
tions and disciplines: family social science theories,
family therapy theories, and nursing models and
theories. Figure 3-2 shows the theoretical frame-
works that influence the nursing of families.
Family Social Science Theories
Of the three sources of theory, family social science
theories are the best developed and informative
about family phenomena; examples of such theo-
ries include the following: family function, the
environment-family interchange, interactions and
dynamics within the family, changes in the family
over time, and the family’s reaction to health and
illness. Table 3-1 summarizes the basic family
social science theories and provides some classic
references where these theories originate. It is
somewhat challenging to use the purist form of
family social science theories as a basis for nursing
assessment and intervention because of their ab-
stract nature. Despite this challenge, in recent
years, nursing and family scholars have made
strides in extrapolating and morphing these theo-
ries for use in clinical work (Fine & Fincham,
2012; Kaakinen & Hanson, 2010).
Family Therapy Theories
Family therapy theories are newer than and not as
well developed as family social science theories.
Table 3-2 lists these theories and the names of
some foundational scholars who first developed
them. These theories emanate from a practice dis-
cipline of family therapy, rather than from an aca-
demic discipline of family social science. Family
therapy theories were developed to work with trou-
bled families and, therefore, focus primarily on
family pathology. Nevertheless, these conceptual
models describe family dynamics and patterns that
are found, to some extent, in all families. Because
these models are concerned with what can be done
to facilitate change in “dysfunctional” families, they
are both descriptive and prescriptive. That is, they
not only describe and explain observations made in
practice but also suggest treatment or intervention
strategies.
Nursing Conceptual Frameworks
Finally, of the three types of theories, nursing con-
ceptual frameworks are the least developed “theories”
in relation to the nursing of families. Table 3-3 lists
several of the theories and theorists from within the
nursing profession. During the 1960s and 1970s,
nurses placed great emphasis on the development
of nursing models. Other than the Neuman Sys-
tems Model (Neuman & Fawcett, 2010) and the
Behavioral Systems Model for Nursing (Johnson,
1980), both of which were based on family social
science theories, the majority of the classic nursing
70 Foundations in Family Health Care Nursing
NURSING
MODELS/THEORIES
FAMILY THERAPY THEORIES
FAMILY SOCIAL
SCIENCE THEORIES
EMERGING
FAMILY NURSING
THEORIES
FIGURE 3-2 Theoretical frameworks that influence the
nursing of families.
3921_Ch03_067-104 05/06/14 10:56 AM Page 70
theorists from the 1970s focused on individual pa-
tients and not on families as a unit of care/analysis.
The nursing models, in large part, represent a
deductive approach to the development of nursing
science (general to specific). Although they embody
an important part of our nursing heritage, these
nursing conceptual frameworks and their deductive
approach are viewed more critically today. As the
science of nursing has evolved, more inductive
approaches to nursing theory development (specific
to the general) are now being advocated.
Table 3-4 shows the differences between family
social science theories, family therapy theories, and
nursing models/theories as they inform the practice
of nursing with families. The following case study
is used to demonstrate how the five different theo-
retical approaches may inform a nurse’s work with
one particular family.
Theoretical Foundations for the Nursing of Families 71
Table 3-1 Family Social Science Theories Used in Family Nursing Practice
Family Social Science Theory Summary
Structural Functional Theory
Artinian (1994)
Friedman, Bowden, & Jones (2003)
Nye & Berardo (1981)
Symbolic Interaction Theory
Hill & Hansen (1960)
Nye (1976)
Rose (1962)
Turner (1970)
Developmental Theory and
Family Life Cycle Theory
Carter & McGoldrick (2005)
Duvall (1977)
Duvall & Miller (1985)
Family Systems Theory
von Bertalanffy (1950, 1968)
Family Stress Theory
Hill (1949, 1965)
McCubbin & McCubbin (1993)
McCubbin & Patterson (1983)
Change Theory
Maturana (1978)
Maturana & Varela (1992)
Watzlawick, Weakland, & Fisch (1974)
Wright & Leahey (2013)
Wright & Watson (1988)
Transition Theory
White (2005)
White & Klein (2008)
The focus is on families as an institution and how they function to maintain family
and social network.
The focus is on the interactions within families and the symbolic communication.
The focus is on the life cycle of families and representing normative stages of
family development.
The focus is on the circular interactions among members of family systems, which
result in functional or dysfunctional outcomes.
The focus is on the analysis of how families experience and cope with stressful life
events.
The focus is on how families remain stable or change when there is change within
the family structure or from outside influences.
The focus is on understanding and predicting the transitions families experience
over time by combining Role Theory, Family Development Theory, and Life
Course Theory.
3921_Ch03_067-104 05/06/14 10:56 AM Page 71
72 Foundations in Family Health Care Nursing
Table 3-2 Family Therapy Theories Used in Family Nursing Practice
Family Therapy Theories Summary
Structural Family Therapy Theory
Minuchin (1974)
Minuchin & Fishman (1981)
Minuchin, Rosman, & Baker (1978)
Nichols (2004)
International Family Therapy Theory
Jackson (1965)
Satir (1982)
Watzlawick, Beavin, & Jackson (1967)
Family Systems Therapy Theory
Freeman (1992)
Kerr & Bowen (1988)
Toman (1961)
This systems-oriented approach views the family as an open sociocultural system
that is continually faced with demands for change, both from within and from
outside the family. The focus is on the whole family system, its subsystems,
boundaries, and coalitions, as well as family transactional patterns and covert rules.
This approach views the family as a system of interactive or interlocking behaviors
or communication processing. Emphasis is on the here and now rather than on
the past. Key interventions focus on establishing clear, congruent communication
and clarifying and changing family rules.
This approach focuses on promoting differentiation of self from family and pro-
moting differentiation of intellect from emotion. Family members are encouraged
to examine their processes to gain insight and understanding into their past and
present. This therapy requires a long-term commitment.
Table 3-3 Nursing Theories and Models Used in Family Nursing Practice
Nursing Theories and Models Summary
Nightingale
Nightingale (1859)
Rogers’s Science of Unitary
Human Beings
Casey (1996)
Rogers (1970, 1986, 1990)
Roy’s Adaptation Model
Roy (1976)
Roy & Roberts (1981)
Johnson’s Behavioral
Systems Model for Nursing
Johnson (1980)
King’s Goal Attainment Theory
King (1981, 1983, 1987)
Family is described as having both positive and negative influences on the outcome of
family members. The family is seen as a supportive institution throughout the life span
for its individual family members.
The family is viewed as a constant open system energy field that is ever-changing in its
interactions with the environment.
The family is seen as an adaptive system that has inputs, internal control, and feedback
processes and output. The strength of this model is understanding how families adapt
to health issues.
The family is viewed as a behavioral system composed of a set of organized interactive
interdependent and integrated subsystems that adjust and adapt with internal and
external forces to maintain stability.
The family is seen as the vehicle for transmitting values and norms of behavior across
the life span, which includes the role of a sick family member. Family is responsible for
addressing the health care function of the family. Family is seen as both an interpersonal
and a social system. The key component is the interaction between the nurse and the
family as client.
3921_Ch03_067-104 05/06/14 10:56 AM Page 72
Theoretical Foundations for the Nursing of Families 73
Table 3-3 Nursing Theories and Models Used in Family Nursing Practice—cont’d
Nursing Theories and Models Summary
Neuman’s Systems Model
Neuman (1983, 1995)
Orem’s Self-Care Deficit
Theory
Gray (1996)
Orem (1983a, 1983b, 1985)
Parse’s Human Becoming
Theory
Parse (1992, 1998)
Friedemann’s Framework
of Systemic Organization
Friedemann (1995)
Denham’s Family Health
Model
Denham (2003)
The family is viewed as a system. The family’s primary goal is to maintain its stability by pre-
serving the integrity of its structure by opening and closing its boundaries. It is a fluid model
that depicts the family in motion and not a static view of family from one perspective.
The family is seen as the basic conditioning unit in which the individual learns culture,
roles, and responsibilities. Specifically, family members learn how to act when one is ill.
The family’s self-care behavior evolves through interpersonal relationships, communication,
and culture that is unique to each family.
The concept of family and who makes up the family is viewed as continually becoming
and evolving. The role of the nurse is to use therapeutic communication to invite family
members to uncover their meaning of the experience, to learn what the meaning of the
experience is for each other, and to discuss the meaning of the experience for the family
as a whole.
The family is described as a social system that has the expressed goal of transmitting
culture to its members. The elements central to this theory are family stability, family
growth, family control, and family spirituality.
Family health is viewed as a process over time of family member interactions and
health-related behaviors. Family health is described in relation to contextual, functional,
and structural domains. Dynamic family health routines are behavioral patterns that
reflect self-care, safety and prevention, mental health behaviors, family care, illness care,
and family caregiving.
Table 3-4 Family Social Science Theories, Family Therapy Theories, and Nursing Models/Theories
Family Social Family Nursing
Criteria Science Theories Therapy Theories Models/Theories
Purpose of theory
Discipline focus
Target population
Descriptive and explana-
tory (academic models);
to explain family function-
ing and dynamics.
Interdisciplinary (although
primarily sociological).
Primarily “normal” families
(normality-oriented).
Descriptive and prescriptive
(practice models); to explain
family dysfunction and guide
therapeutic actions.
Marriage and family therapy;
family mental health; new
approaches focus on family
strengths.
Primarily “troubled” families
(pathology-oriented).
Descriptive and prescriptive
(practice models); to guide
nursing assessment and
intervention efforts.
Nursing focus.
Primarily families with health
and illness problems.
Source: Kaakinen, J. R., & Hanson, S. M. H. (2010). Theoretical foundations for nursing of families. In J. R. Kaakinen, V.
Gedaly-Duff, D. P. Coehlo, & S. M. H. Hanson (Eds.), Family health care nursing: Theory, practice and research
(4th ed.). Philadelphia, PA: F. A. Davis, with permission.
3921_Ch03_067-104 05/06/14 10:56 AM Page 73
74 Foundations in Family Health Care Nursing
age 39, but he is described as “a blessing.” Linda and
Robert are devout Baptists, but they did discuss abortion
in light of the fact that Linda’s illness could progress signifi-
cantly after the birth of Travis. Their faith and personal
beliefs did not support abortion. They made the decision
to continue with Linda’s pregnancy, knowing the risk that it
might exacerbate and speed up her MS. Linda had an
uncomplicated pregnancy with Travis. She felt well until
3 months postpartum with Travis when she noted a
significant relapse of her MS.
Over the last 4 years, Linda has experienced develop-
ment of progressive relapsing MS, which is a progressive
disease from onset with clear, acute relapses without full
recovery after each relapse. The periods between her re-
lapses are characterized by continuing progression of the
disease. She now has secondary progressive multiple scle-
rosis because of her increased weakness. Robert and Linda
are having sexual issues with decreased libido and painful
intercourse for Linda. Both are experiencing stress in their
marital roles and relationship.
Currently, Linda has had a serious relapse of her MS.
She is hospitalized for secondary pneumonia from aspi-
ration. She has weakness in all limbs, left foot drag, and
increasing ataxia. Linda will be discharged with a wheel-
chair (this aid is new as she has used a cane up until
this admission). She has weakness of her neck muscles
and cannot hold her head steady for long periods. She
has difficulty swallowing, which probably caused her
Family Case Study: Jones Family
Setting: Inpatient acute care hospital
Nursing Goal: Work with the family to assist them in
preparation for discharge that is planned to occur in the
next 2 days.
Family Members:
The Jones family is a nuclear family. The Jones family
genogram and ecomap are illustrated in Figures 3-3 and 3-4.
• Robert: 48 years old; father, software engineer, full-time
employed.
• Linda: 43 years old; mother, stay-at-home homemaker,
has progressive multiple sclerosis, which recently has
worsened significantly.
• Amy: 19 years old; oldest child, daughter, freshman at
university in town 180 miles away.
• Katie: 13 years old: middle child, daughter, sixth grade,
usually a good student.
• Travis: 4 years old: youngest child, son, just started
attending an all-day preschool because of his mother’s
illness.
Jones Family Story:
Linda was diagnosed with multiple sclerosis (MS) at age 30
when Katie was 3 months old. After she was diagnosed
with MS, Linda had a well-controlled, slow progression of
her illness. Travis was a surprise pregnancy for Linda at
Elise
70 yr
Amy
19 yr
Freshman at
university 180
miles away
Healthy
Sixth grade
Healthy
Usually a good
student, now
showing some
difficulty noted
by teachers
Preschool, just
moved to full day
Healthy
Katie
13 yr
Travis
4 yr
Full-time
software
engineer
Healthy Full-time
employed
teacher,
high school
Tom
64 yr
Sally
63 yr
Full-time
employed
secretary
Multiple sclerosis;
progressive and
relapse
UTI
Constipation
Difficulty swallowing
Requires
supplemental O2
Uses wheelchair
Robert
48 yr
Ralph
Linda
43 yr
FIGURE 3-3 Jones family genogram.
3921_Ch03_067-104 05/06/14 10:56 AM Page 74
Theoretical Foundations for the Nursing of Families 75
aspiration. She has numbness and tingling of her legs
and feet. She has severe pain with flexion of her neck.
Her vision is blurred. She experiences vertigo at times
and has periodic tinnitus. Constipation is a constant
problem, together with urinary retention that causes
periodic urinary tract infections.
Health Insurance:
Robert receives health insurance through his work that cov-
ers the whole family. Hospitalizations are covered 80/20,
so they have to pay 20% of their bills out of pocket. Al-
though Robert is employed full-time, this cost adds heavily
to the financial burden of the family. Robert has shared
with the nurses that he does not know whether he should
take his last week of vacation when his wife comes home,
or whether he should save it for a time when her condition
worsens. Robert works for a company that offers family
leave, but without pay.
Family Members:
Robert reports being continuously tired from caring for his
wife and children, as well as working full-time. He asked the
doctor for medication to help him sleep and decrease his
anxiety. He said he is afraid that he may not hear Linda in
the night when she needs help. He is open to his mother
moving in to help care for Linda and the children. He began
counseling sessions with the pastor in their church.
Amy is a freshman at a university that is 180 miles
away in a different town. Her mother is proud of Amy
going to college on a full scholarship. Amy does well in
her coursework but travels home weekends to help the
Travis’s P.E.
school teacher Hospital socialworker
MS support
group
Pastor
Woman’s
church group
Linda’s
parents
Paternal
grandmother,
Elise
Neurology
team
CNS
Neurology
RN case
manager
Family
insurance
Robert’s work
Katie’s middle
school teacher
R
TKA
Weak relationship
Strong relationship
Tense relationship
Direction of
energy flow
L
FIGURE 3-4 Jones family ecomap.
(continued)
3921_Ch03_067-104 05/06/14 10:56 AM Page 75
76 Foundations in Family Health Care Nursing
family and her mother. Amy is considering giving up her
scholarship to transfer home to attend the local commu-
nity college. She has not told her parents about this
idea yet.
Katie is in the sixth grade. She is typically a good stu-
dent, but her latest report card showed that she dropped
a letter grade in most of her classes. Katie is quiet. She
stopped having friends over to her home about 6 months
ago when her mother began to have more ataxia and slur-
ring of speech. Linda used to be very involved in Katie’s
school but is no longer involved because of her illness.
Katie has been involved in Girl Scouts and the youth group
at church.
Travis just started going to preschool 2 months ago for
full days because of his mother’s illness. This transition to
preschool has been difficult for Travis because he had been
home full-time with Linda until her disease worsened. He is
healthy and developmentally on target for his age.
Linda’s parents live in the same town. Her parents,
Tom and Sally, both work full-time and are not able to
help. Robert’s widowed mother, Elise, lives by herself in
her own home about 30 minutes out of town and has
offered to move into the Jones’ home to help care for
Linda and the family.
Discharge Plans: Linda will be discharged home in 2 days.
THEORETICAL PERSPECTIVES
AND APPLICATION TO FAMILIES
The case of the Jones family is used throughout the
rest of this chapter to demonstrate how assess-
ments, interventions, and options for care vary
based on the particular theoretical perspective
chosen by nurses caring for this family.
Family Systems Theory
Family Systems Theory has been the most influential
of all the family social science frameworks (Kaakinen
& Hanson, 2010; Wright & Leahey, 2013). Much
of the understanding of how a family is a system de-
rives from physics and biology perspectives that or-
ganisms are complex, organized, and interactive
systems (Bowen, 1978; von Bertalanffy, 1950, 1968).
Nursing theorists who have expanded the concept
of systems theory include Hanson (2001), Johnson
(1980), Neuman (1995), Neuman and Fawcett
(2010), Parker and Smith (2010), Walker (2005),
and Wilkerson and Loveland-Cherry (2005).
The Family Systems Theory is an approach
that allows nurses to understand and assess fami-
lies as an organized whole and/or as individuals
within family units who form an interactive and
interdependent system (Kaakinen & Hanson,
2010). Family Systems Theory is constructed
of concepts and propositions that provide a
framework for thinking about the family as a
system. Typically, in family nursing, we look
at three-generational family systems (Goldenberg
& Goldenberg, 2012).
One of the major assumptions of Family Sys-
tems Theory is that family system features are de-
signed to maintain stability, although these features
may be adaptive or maladaptive. At the same time,
families change constantly in response to stresses
and strains from both the internal and external en-
vironments. Family systems increase in complexity
over time and increase their ability to adapt and to
change (Smith & Hamon, 2012; White & Klein,
2008). The family systems theoretical perspective
encourages nurses to see individual clients as
participating members of a larger family system.
Figure 3-5 depicts a mobile showing how family
systems work. Any change in one member of the
family affects all members of the family. As it
applies to the Jones family, nurses who are using
this perspective would assess the impact of Linda’s
illness on the entire family, as well as the effects of
family functioning on Linda. The goal of nurses is
to help maintain or restore the stability of the fam-
ily, to help family members achieve the highest
level of functioning that they can. Therefore,
emphasis should be on the whole, rather than on
any given individual. Some of the concepts of sys-
tems theory that help nurses working with families
are explained in the following sections.
Concept 1: All Parts of the System
Are Interconnected
What influences one part of the system influences
all parts of the system. When an individual in a
family experiences a health event, all members are
affected because they are connected. The effect
on each family member varies in intensity and
3921_Ch03_067-104 05/06/14 10:56 AM Page 76
quality. In the Jones case study, all members of the
Jones family are touched when Linda’s health
condition changes, requiring her to be hospital-
ized. Linda takes on the role of a sick person and
must give up some of her typical at-home mother
roles; she is physically ill in the hospital. She feels
guilty about not being at home for her family.
Robert is affected because he has to assume the
care of Katie and Travis. These tasks require get-
ting them ready for school, transporting them to
school and other events, and making lunches.
Katie gives up some after-school activities to help
Travis when he gets home from preschool. Travis
misses the food his mother prepared for him, his
afternoon alone time with his mother when they
read a story, and being tucked into bed at night
with songs and a back rub. Amy, who is a fresh-
man in college, finds it difficult to concentrate
while reading and studying for her college classes.
The formal and informal roles of all these family
members are affected by Linda’s hospitalization.
What affects Linda affects all the members of the
Jones family in multiple ways.
Concept 2: The Whole Is More Than
the Sum of Its Parts
The family as a whole is composed of more than the
individual lives of family members. It goes beyond
parents and children as separate entities. Families
are not just relationships between the parent-child
but are all relationships seen together. As we look
at the Jones family, it is a nuclear family—mother,
father, and three children. They are a family system
that is experiencing the stress of a chronically ill
mother who is deteriorating over time; each of them
is individually affected, but so is the family as a
whole affected by this unexpected (nonnormative)
family health event. The individuals in this family
may, at times, wonder what will happen to them as
a family (whole) when Linda dies.
One way of visualizing the family as a whole is
to think of how the Jones family has built the con-
cept of the “Jones Family Easter.” Even though
Linda always decorates the house and bakes sev-
eral special dishes for the family for this holiday,
this year she has been too ill to decorate or cook
for Easter. The family as a whole feels stressed by
the loss of routine and ritual as it represents a
change in their family tradition and beliefs. Thus,
the family loss is larger than individual loss of this
tradition.
Concept 3: All Systems Have Some Form
of Boundaries or Borders Between the
System and Its Environment
Families control the in-flow of information and
people coming into its family system to protect in-
dividual family members or the family as a whole.
Boundaries are physical or abstract imaginary lines
that families use as barriers or filters to control the
impact of stressors on the family system (Smith &
Hamon, 2012; White & Klein, 2008). Family
boundaries include levels of permeability in that
they can be closed, flexible, or too open to infor-
mation, people, or other forms of resources. Some
families have closed boundaries as exemplified by
statements such as, “We as a family pull together
and don’t need help from others,” or “We take care
of our own.” For example, if the Jones family were
to have a closed boundary, they would not want to
meet with the social worker or, if they did, they
would reject the idea of a home-health aide and
respite care.
Some families have flexible boundaries, which they
control and selectively open or close to gain bal-
ance or adapt to the situation. For example, the
Jones family welcomes a visit from the pastor but
turns down visits from some of the women in
Linda’s Bible study group. Some families have too
open boundaries in which they are not discriminating
about who knows their family situation or the num-
ber of people from whom they seek help. Open
boundaries can invite chaos and unbalance if the
family is not selective in the quantity or quality of
resources. If the Jones family were to have truly
open boundaries, it may reach out to the larger com-
munity for resources and have different church
Theoretical Foundations for the Nursing of Families 77
FIGURE 3-5 Mobile depicting family system.
3921_Ch03_067-104 05/06/14 10:56 AM Page 77
members come stay with the children every
evening. The permeability of boundaries resides on
a continuum and varies from family to family.
Concept 4: Systems Can Be Further
Organized Into Subsystems
In addition to conceptualizing the family as a
whole, nurses can think about the subsystems of the
family, which may include husband to wife, mother
to child, father to child, child to child, grandparents
to parents, grandparents to grandchildren, and so
forth. These subsystems take into account the three
dimensions of families discussed in Chapter 1:
structure, function (including roles), and processes
(interconnection and dynamics). By understanding
these three dimensions, family nurses can stream-
line interventions to achieve specific family out-
comes. For example, the Jones family has the
following subsystems: parents, siblings, parent-
child, a daughter subsystem, an in-law subsystem,
and a grandparent subsystem. The nurse may work
to decrease family stress by focusing on the marital
spouse subsystem to help Linda and Robert con-
tinue couple time, or the nurse may focus on the
sibling subsystem of Katie and Travis and their
after-school activities.
Application of Family Systems Theory
to the Jones Family
The focus of the nurses’ practice from this perspec-
tive is family as the client. Nurses work to help
families maintain and regain stability. Assessment
questions of family members are focused on the
family as a whole. While planning for Linda’s dis-
charge that is scheduled in the next couple of days,
a nurse would ask questions such as the following
to explore with Linda or with Linda and Robert:
■ Who are members of your family? (See
Concept 1.)
■ How do you see your family being involved
in your care once you go home? (See
Concept 1.)
■ Who in your family will experience the most
difficulty coping with the changes, especially
now that you will be using a wheelchair?
(See Concept 1.)
■ How are the members of your family
meeting their personal needs at this time?
(See Concept 1.)
■ The last time your condition worsened, what
helped your family the most? (See Concept 2.)
■ The last time your condition worsened,
what was the least help to your family?
(See Concept 2.)
■ Who outside of your immediate family do
you see as being a potential person to help
your family during the next week when you
go home? (See Concept 3.)
■ How do you feel your family would react to
having a home-health aide come to help you
twice a week? (See Concept 3.)
■ Are there some friends, church members,
or neighbors who might be able to help with
some of the everyday management issues,
such as carpooling to school, or providing
some after-school care for Travis so Katie
could go to her after-school activities?
(See Concepts 3 and 4.)
■ What are your thoughts about how the
children will react to having Grandma Elise
here to help the family? (See Concept 4.)
Interventions by family nurses must address in-
dividuals, subsystems within the family, and the
whole family all at the same time. One strategy
would be to assess family process and functioning
and then offer intervention strategies to assist the
family in its everyday functioning. Nurses could ask
the following types of questions about functioning:
■ Linda and Robert, from what you have told
me, it appears that your oldest daughter,
Amy, has been able to help take on some of
the parental jobs in the family by being the
errand runner, chauffeur, and grocery shop-
per. Now that Amy is off to college, which
of your family roles will need to be covered
by someone else for a while when you and
Linda first come home: cooking, laundry,
chauffeur, cleaning the house?
■ Because you both shared with me that your
family likes to go bowling on family night
out, how do you envision how Linda being in
a wheelchair might affect family night out?
■ Robert and Linda, have the two of you dis-
cussed legal durable power of attorney for
health care so Robert can make health care
decisions when the time comes that Linda
may not be able to do this for herself? Linda,
who would you prefer to make health care
decisions for you, should you not be able to
do so? Let’s discuss what those health care
decisions might involve.
78 Foundations in Family Health Care Nursing
3921_Ch03_067-104 05/06/14 10:56 AM Page 78
■ Tell me about your personal/sexual relation-
ship that you, Linda, are experiencing now
that you are more disabled.
The goal of using a family systems perspective
is to help the family reach stability by building on
their strengths as a family, using knowledge of the
family as a social system, and understanding how
the family is an interconnected whole that is adapt-
ing to the changes brought about by the health
event of a given family member.
Strengths and Weaknesses of Family
Systems Theory
The strengths of the general systems framework
are that this theory covers a large array of phe-
nomena and views the family and its subsystems
within the context of its suprasystems (the larger
community in which it is embedded). Moreover, it
is an interactional and holistic theory that looks at
processes within the family, rather than at the con-
tent and relationships between the members. The
family is viewed as a whole, not as merely a sum of
its parts. Another strength of this approach is that
it is an excellent data-gathering method and assess-
ment strategy, such as using a family genogram to
gather a snapshot of the family as a whole or other
family system assessment instruments discussed in
Chapter 4.
Systems theory also has its limitations (Smith &
Hamon, 2012). Because this theoretical orientation
is so global and abstract, it may not be specific
enough for beginners to define family nursing in-
terventions. It is important for family nurses to be
able to understand conceptually how important the
family as a whole is to the practice of family nurs-
ing. As health care systems continue to emphasize
the autonomy of the individual, it takes time and
practice to develop ways to deeply understand how
a family, as a whole, is greater than the members
of the family.
Developmental and Family Life Cycle
Theory
Developmental Theory provides a framework for
nurses to understand normal family changes and
experiences over the members’ lifetimes; the the-
ory assesses and evaluates both individuals and
families as a whole. Developmental stages for in-
dividuals have been detailed by psychologists and
sociologists, such as Erikson, Piaget, and Bandura.
Families are seen as a system in that what happens
at one level has powerful ramifications at other lev-
els of the system. Families are seen as the basic
social unit of society and as the optimal level of
intervention.
The family developmental theories are specifi-
cally geared to understanding families and not in-
dividuals (Smith & Hamon, 2013; White & Klein,
2008). Families, like individuals, are in constant
movement and change throughout time—the fam-
ily life cycle. Family developmental theorists who
inform the nursing of families include Duvall
(1977); Duvall and Miller (1985); and McGoldrick,
Carter, and Garcia-Preto (2010). The original
work of Duvall (1977), and later Duvall and Miller
(1985), examined how families were affected or
changed cognitively, socially, emotionally, spiritu-
ally, and physically when all members experienced
developmental changes. The relationships among
family members are affected by changes in individ-
uals, and changes in the family as a whole affected
the individuals within the family. These theorists
recognized that families are stressed at common
and predictable stages of change and transition and
need to undergo adjustment to regain family
stability. This early theoretical work was primarily
based on the experiences of white Anglo middle-
class nuclear families, with a married couple,
children, and extended family.
McGoldrick et al. (2010) expanded on the orig-
inal Developmental and Family Life Cycle Theory
because they recognized the dramatically chang-
ing landscape of family structure, functions, and
processes that was making it increasingly difficult
to determine normal predictable patterns of change
in families. They replaced the concept of “nuclear
family” with “immediate family,” which takes into
consideration all family structures, such as stepfam-
ilies, gay families, and divorced families. Instead of
addressing the legal aspects of being a married cou-
ple, they viewed the concept of couple relationships
and commitment as a focal point for family bonds.
Concept 1: Families Develop and Change
Over Time
According to Family Developmental Theory, fam-
ily interactions among family members change
over time in relation to structure, function (roles),
and processes. The stresses created by these
changes in family systems are somewhat pre-
dictable for different stages of family development.
Theoretical Foundations for the Nursing of Families 79
3921_Ch03_067-104 05/06/14 10:56 AM Page 79
The first way to view family development is
to look at predictable stresses and changes as they
relate to the age of the family members and
the social norms the individuals experience
throughout their development. The classic tradi-
tional work of Duvall (1977) and Duvall and
Miller (1985) identified overall family tasks that
need to be accomplished for each stage of family
development, as related to the developmental tra-
jectory of the individual family members. It starts
with couples getting married and ends with one
member of the couple dying. Refer to Table 3-5
for a detailed list of the traditional family life
cycle stages and developmental tasks. McGoldrick
et al. (2010) expanded the traditional develop-
mental and family life cycle theory to address
changes in the family that undergoes a divorce.
Table 3-6 outlines the emotional process of a
family undergoing a divorce and describes the
developmental tasks the family deals with at dif-
ferent stages.
According to this theory, families have a pre-
dictable natural history. The first stage involves the
simple husband-wife pairing, and the family group
becomes more complex over time with the addition
of new members. When the younger generation
leaves home to take jobs or marry, the original fam-
ily group becomes less complex again.
The second way to view family development is
to assess the predictable stresses and changes in
families based on the stage of family development
and how long the family is in that stage. For ex-
ample, suppose each of the following couples have
made a choice to be childless: a newly married
couple, a couple who have been married for
3 years, and a couple who have been married for
80 Foundations in Family Health Care Nursing
Table 3-5 Traditional Family Life Cycle Stages and Developmental Tasks
Stages of Family Life Cycle Family Developmental Tasks
Married couple
Childbearing families with infants
Families with preschool children
Families with school-age children
Families with adolescents
Families with young adults: launching
Middle-aged parents
Aging families
Establishing relationship as a married couple.
Blending of individual needs, developing conflict-and-resolution approaches,
communication patterns, and intimacy patterns.
Adjusting to pregnancy and then infant.
Adjusting to new roles, mother and father.
Maintaining couple bond and intimacy.
Understanding normal growth and development.
If more than one child in family, adjusting to different temperaments and styles
of children.
Coping with energy depletion.
Maintaining couple bond and intimacy.
Working out authority and socialization roles with school.
Supporting child in outside interests and needs.
Determining disciplinary actions and family rules and roles.
Allowing adolescents to establish their own identities but still be part of family.
Thinking about the future, education, jobs, working.
Increasing roles of adolescents in family, cooking, repairs, and power base.
After member moves out, reallocating roles, space, power, and communication.
Maintaining supportive home base.
Maintaining parental couple intimacy and relationship.
Refocusing on marriage relationship.
Ensuring security after retirement.
Maintaining kinship ties.
Adjusting to retirement, grandparent roles, death of spouse, and living alone.
3921_Ch03_067-104 05/06/14 10:56 AM Page 80
Theoretical Foundations for the Nursing of Families 81
Table 3-6 Family Life Cycle for Divorcing Families
Emotional Process of Transition:
Phase Prerequisite Attitude Developmental Issues
Divorce
The decision to divorce
Planning the breakup of
the system
Separation
The divorce
Postdivorce Family
Single parent (custodial
household or primary
residence)
Single parent
(noncustodial)
Acceptance of inability to resolve marital
tensions sufficiently to continue
relationship.
Supporting viable arrangements for all
parts of the system.
a. Willingness to continue cooperative
co-parental relationship and joint financial
support of children.
b. Work on resolution of attachment to
spouse.
More work on emotional divorce:
overcoming hurt, anger, guilt, among
other emotions.
Willingness to maintain financial responsi-
bilities, continue parental contact with
ex-spouse, and support contact of chil-
dren with ex-spouse and his or her family.
Willingness to maintain financial
responsibilities and parental contact with
ex-spouse, and to support custodial
parent’s relationship with children.
Acceptance of one’s own part in the failure
of the marriage.
a. Working cooperatively on problems of
custody, visitation, and finances.
b. Dealing with extended family about the
divorce.
a. Mourning loss of intact family.
b. Restructuring marital and parent-child
relationships and finances; adaptation to
living apart.
c. Realignment of relationships with
extended family; staying connected with
spouse’s extended family.
a. Mourning loss of intact family.
b. Retrieval of hopes, dreams, expectations
from the marriage.
c. Staying connected with extended
families.
a. Making flexible visitation arrangements
with ex-spouse and family.
b. Rebuilding own financial resources.
c. Rebuilding own social network.
a. Finding ways to continue effective
parenting.
b. Maintaining financial responsibilities to
ex-spouse and children.
c. Rebuilding own social network.
Source: Adapted from Carter, B., & McGoldrick, M. (2005). The divorce cycle: A major variation in the American
family life cycle. In B. Carter & M. McGoldrick (Eds.), The expanded family life cycle: Individual, family, and social
perspectives (3rd ed.). New York, NY: Allyn & Bacon.
15 years (White & Klein, 2008). The stresses each
couple experiences from this decision would be
different.
Concept 2: Families Experience Transitions
From One Stage to Another
Disequilibrium occurs in the family during the
transitional periods from one stage of development
to the next stage. When transitions occur, families
experience changes in kinship structures, family
roles, social roles, and interaction. Family stress is
considered to be greatest at the transition points as
families adapt to achieve stability, redefine their
concept of family in light of the changes, and re-
align relationships as a result of the changes
(McGoldrick et al., 2010). For example, marriage
changes the status of all family members, creates
new relationships for family members, and joins
two different complex family systems.
Family developmental theorists explore whether
families make these transitions “on time” or “off
time” according to cultural and social expectations
3921_Ch03_067-104 05/06/14 10:56 AM Page 81
(Smith & Hamon, 2012; White & Klein, 2008). For
example, it is “off time” for a couple in their forties
to have their first child. It is still considered “on
time” in North America to have a couple be married
before the birth of a child, but that norm may be
changing given the increased numbers of babies
born to couples who are not married but cohabitate.
Even though some family developmental needs
and tasks must be performed at each stage of the
family life cycle, developmental tasks are general
goals, rather than specific jobs that must be com-
pleted at that time. Achievement of family devel-
opmental tasks enables individuals within families
to realize their own individual tasks. According to
family developmental theory, every family is
unique in its composition and in the complexity
of its expectations of members at different ages
and in different roles. Families, like individuals,
are influenced by their history and traditions and
by the social context in which they live. Further-
more, families change and develop in different
ways because their internal/external demands and
situations differ. Families may also arrive at simi-
lar developmental levels using different processes.
Despite their differences, however, families have
enough in common to make it possible to chart
family development over the life span in a way
that applies to most, if not all families (Friedman,
Bowden, & Jones, 2003). Families experience
stress when they transition from one stage to the
next. The predictable changes that are based on
these family developmental steps are called nor-
mative changes. When changes occur in families
out of sequence, “off time,” or are caused by a dif-
ferent family event, such as illness, they are called
nonnormative.
In contrast with the Duvall (1977) and later
Duvall and Miller’s (1985) traditional develop-
mental approach, Carter and McGoldrick (1989)
and McGoldrick et al. (2010) built on this work
by approaching family development from the per-
spective of family life cycle stages. They explored
what happens within families when family mem-
bers enter or exit their family group; they focus
on specific family experiences, such as disruption
in family relationships, roles, processes, and fam-
ily structure. Examples of a family member leav-
ing would be divorce, illness, a miscarriage, or
death of a family member. Examples of family
members entering would include birth, adoption,
marriage, or other formal union.
Today, the Developmental and Family Life
Cycle Theory remains useful as long as it is viewed
generally for use with families, despite all the cur-
rent variations of families. McGoldrick et al. (2010)
recently expanded the Family Life Cycle to incor-
porate the changing family patterns and broaden
the view of both development and the family.
Application of Developmental and Family
Life Cycle Theory to the Jones Family
In conducting family assessments using the devel-
opmental model, nurses begin by determining the
family structure and where this family falls in the
family life cycle stages. Using the developmental
tasks outlined in the developmental model, the
nurse has a ready guide to anticipate stresses the
family may be experiencing or to assess the devel-
opmental tasks that are not being accomplished.
Family assessment would also entail determining
whether the family is experiencing a “normative”
or “nonnormative” event in the family life cycle.
According to Duvall and Miller (1985), the
Jones family is in the Families With Young Adults:
Launching Phase because Amy left home and is now
a freshman at a college. She is living away from
home for the first time. Regardless of the fact that
the Jones family is experiencing a nonnormative
event (unexpected, developmental stressor) because
Linda, the mother, is now in the hospital, the fam-
ily is also experiencing the normative or expected
challenges for a family when the oldest child leaves
home. This is a good example of where major in-
dividual and whole family events coincide and pres-
ent challenges for families. Questions to explore
with the family might include the following:
1. How has the family addressed the realloca-
tion of family household physical space since
Amy left for school? (For example, the allo-
cation of bedrooms or the arrangement of
space within the bedroom if Katie and Amy
shared the bedroom).
2. How has Amy developed as an indirect
caregiver (such as calling home to chat with
dad and see how he is doing, talking with
the siblings and teasing or supporting their
efforts, or sharing with parents her school
life to reduce their worry about her
adjustment)?
3. How have family roles changed since Amy
left for school? What roles did Amy perform
82 Foundations in Family Health Care Nursing
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for the family that someone else needs to
pick up now? For example, who will per-
form such roles as chauffeur, grocery shop-
per, errand runner, and babysitter now
that Linda is not able and Amy is gone?
4. How has the power structure of the family
shifted now that Katie is more responsible
for the care of Travis?
5. How has the parents’ couple time changed
since Amy went off to college?
With the developmental approach, nursing
interventions may include helping the family to un-
derstand individual and family developmental tasks.
Interventions could also include helping the family
understand the normalcy of disequilibrium during
these transitional periods. Another intervention is
to help the family mitigate these transitions by cap-
italizing on family rituals. Family rituals serve to
decrease the anxiety of changes in that they help
link the family to other family members and to the
larger community (Imber-Black, 2005).
Family nurses must recognize that every family
must accomplish both individual and family devel-
opmental tasks for every stage of the Developmental
and Family Life Cycle. Events at one stage of the
cycle have powerful effects at other stages. Helping
families adjust and adapt to these transitions is an
important role for family nurses. It is important for
nurses to keep in mind the needs and requirements
of both the family as a whole and the individuals
who make up the family.
Strengths and Weaknesses of the
Developmental and Family Life Cycle
A major strength of the developmental approach is
that it provides a systematic framework for predict-
ing what a family may be experiencing at any stage
in the family life cycle. Family nurses can assess a
family’s stage of development, the extent to which
the family has achieved the tasks associated with
that stage of family development, and problems
that may or may not exist. It is a superb theoretical
approach for assisting nurses who are working with
families on health promotion. Family strengths and
available resources are easier to identify because
they are based on assisting families to achieve
developmental milestones.
A primary criticism of family development the-
ory is that it best describes the trajectory of intact,
two-parent, heterosexual nuclear families. The
original eight-stage model was based on a nuclear
family, assumed an intact marriage throughout the
life cycle of the family, and was organized around
the oldest child’s developmental needs. It did not
take into account divorce, death of a spouse, remar-
riage, unmarried parents, childless couples, or co-
habitating or gay and lesbian couples. It normalized
one type of family and invalidated others (Smith &
Hamon, 2012). Today’s families vary widely in
their makeup and in their roles. The traditional
view of families moving in a linear direction from
getting married, tracking children from preschool
to launching, middle-aged parents, and aging fam-
ilies is no longer so clear-cut and applicable. Carter
and McGoldrick (1989, 2005), Carter (2005), and
McGoldrick et al. (2010) expanded the family
developmental model to include stresses in the re-
married family. As family structures continue to
change in response to the culture and ecologic sys-
tem, trajectories of families likely will not fit within
the traditional developmental framework (White
& Klein, 2008).
Bioecological Systems Theory
Urie Bronfenbrenner was one of the world’s lead-
ing scholars in the field of developmental psychol-
ogy (Bronfenbrenner, 1972a, 1972b, 1979, 1981,
1986, 1997; Bronfenbrenner & Morris, 1998). He
contributed greatly to the ecological theory of
human development, which concentrated on the
interaction and interdependence of humans—as
biological and social entities—with the environ-
ment. Originally this idea was called the Human
Ecology Theory, then it was changed to Ecological
Systems Theory, and it finally evolved into the
Bioecological Systems Theory (Bronfenbrenner &
Lerner, 2004). The Bioecological System is the
combination of children’s biological disposition
and environmental forces coming together to
shape the development of human beings. This
theory combines both Developmental Theory
and Systems Theory to understand individual and
family growth.
Before Bronfenbrenner, child psychologists
studied children, sociologists examined families,
anthropologists analyzed society, economists scru-
tinized the economic framework, and political sci-
entists focused on political structures. Through
Bronfenbrenner’s groundbreaking work in “human
ecology,” environments from the family to larger
Theoretical Foundations for the Nursing of Families 83
3921_Ch03_067-104 05/06/14 10:56 AM Page 83
economic/political structures have come to be
viewed as part of the life course from childhood
through adulthood. This “bioecological” approach
to human development crosses over barriers among
the social sciences and builds bridges among the
disciplines, allowing for better understanding to
emerge about key elements in the larger social
structure that are vital for optimal human develop-
ment (both individual and family) (Boemmel &
Briscoe, 2001).
The human ecology framework brings together
other diverse influences. From evolutionary theory
and genetics comes the view that humans develop
as individual biological organisms with capacities
limited by genetic endowment (ontogenetic develop-
ment) that lead to hereditary familial characteristics.
From population genetics comes the perspective
that populations change by means of natural selec-
tion. For the individual, this means that individuals/
families demonstrate their fitness by adapting to
ever-changing environments. From ecological the-
ories come the notion that human and family de-
velopment is “contextualized” and “interactional”
(White & Klein, 2008, p. 247). All of this leads to
the never-ending debate related to the dual nature
of humans as constructions of both biology and
culture, hence the argument nature versus nurture.
Although this debate has never been resolved, sci-
entists have moved beyond debate to the realization
that the development of most human traits depends
on a nature/nurture interaction rather than on one
versus the other (White & Klein, 2008). Thus,
Bronfenbrenner moved his own theory and ideas
from the concept and terminology of ecology (en-
vironment) to bioecology (both genetics and soci-
ety) as a way of embracing two developmental
origins for this theory. His Bioecological Systems
Theory emphasizes the interaction of both the
biological/genetics (ontologic/nature) and the so-
cial context (society) characteristics of development
(Smith & Hamon, 2012; White & Klein, 2008).
The human bioecological perspective consists of
a framework of four locational/spatial contexts and
one time-related context (Bengtson, Acock, Allen,
Dilworth-Anderson, & Klein, 2005). A primary fea-
ture of this theory is the premise that individual and
family development is contextual over time. Accord-
ing to Bronfenbrenner, individual development is
affected by five types or levels of environmental sys-
tems (Figure 3-6) (Emory University, 2008). Family
Bioecological Theory describes the interactions and
influences on the family from systems at different
levels of engagement.
Microsystems are the settings in which individuals/
families experience and create day-to-day reality.
They are the places people inhabit, the people with
whom they live, and the things they do together.
In this level, people fulfill their roles in families,
with peers, in schools, and in neighborhoods where
they are in the most direct interaction with agents
around them.
Mesosystems are the relationships among major
microsystems in which persons or families actively
participate, such as families and schools, families
and religion, and families to peers. For example,
how does the interaction between families and
school affect families? Can the relationship
between families and their religious/spiritual com-
munities be used to help families?
Exosystems are external environments that influ-
ence individuals and families indirectly. The person
may not be an active participant within these sys-
tems, but the system has an effect on the persons/
families. For example, a parent’s job experience
affects family life, which, in turn, affects the chil-
dren (parent’s job’s travel requirements, job
stress, salary). Furthermore, governmental funding
to other microsystems environments—schools, li-
braries, parks, health care, and day care—affect the
experiences of children and families.
Macrosystems are the broad cultural attitudes, ide-
ologies, or belief systems that influence institutional
environments within a particular culture/subculture
in which individuals/families live. Examples include
the Judeo-Christian ethic, democracy, ethnicity,
and societal values. Mesosystems and exosystems
are set within macrosystems, and together they
are the “blueprints” for the ecology of human and
family development.
Chronosystems refer to time-related contexts where
changes occur over time and have an effect on the
other four levels/systems of development mentioned
earlier. Chronosystems include the patterning of
environmental events and transitions over the life
course of individuals/families. These effects are cre-
ated by time or critical periods in development and
are influenced by sociohistorical conditions, such as
parental divorce, unexpected death of a parent, or a
war. Individuals/families have no control over the
evolution of such external systems over time.
Within each one of these levels are roles,
norms, and rules that shape the environment.
84 Foundations in Family Health Care Nursing
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Theoretical Foundations for the Nursing of Families 85
CHRONOSYSTEM
Cha
nges
in person
s or environment over time
U
ne
xp
ec
te
d
de
at
h
of
p
ar
en
t B
roa
d i
de
olo
gy,
law
s, an
d cust
oms of one’s culture, subculture, or social class
MACROSYSTEM
Extended Family
EXOSYSTEM
MESOSYSTEM
MI
CRO
SYSTEM
Friends
of
family
Neighbors
Mass
media
Family Day-care
center
Community health
and
welfare services
Doctor’s office
Child
Legal
services
Workplace
Church,
synagogue Peers
School
board
Sociohistorical Conditions
D
isasters W
ar
s
Critical events (e.g., parental divorce)
School Neighborhood
play area
Church
School
FIGURE 3-6 Bioecological Systems Theory Model.
Bronfenbrenner’s model of human/family devel-
opment acknowledges that people develop not in
isolation, but rather in relation to their larger en-
vironment: families, home, schools, communities,
and society. All of these interactive, ever-changing,
and multilevel environments over time are key to
understanding human/family development.
Bronfenbrenner uses the term bidirectional to
describe the influential interactions that take place
between children and their relationships with
parents, teachers, and society. All relationships
among humans/families and their environment are
bidirectional or interactional. The environment in-
fluences us as individuals or families, but, in turn,
individuals/families influence what happens in their
own environments. This kind of interaction is also
basic to family systems theory.
In the bioecological framework, what happens
outside family units is as important as what hap-
pens inside individual members and family units.
3921_Ch03_067-104 05/06/14 10:56 AM Page 85
Developing families are on center stage as an ac-
tive force shaping their social experiences for them-
selves. The ecological perspective views children/
families and their environments as mutually shap-
ing systems, each changing and adapting over time
(again, a systems perspective). The bioecological
approach addresses both opportunities and risks.
Opportunities mean that the environment offers
families material, emotional, and social encourage-
ment compatible with their needs and capacities.
Risks to family development are composed of direct
threats or the absence of opportunities.
Application of the Bioecological Systems
Theory to the Jones Family
Assessment consists of looking at all levels of the
system when interviewing the family in a health
care setting. Assessment of the microsystem reveals
that the Jones family consists of five members: two
parents and three children. They live in a two-story
home with four bedrooms in an older suburban
section of the town. Mother Linda had been a full-
time homemaker before experiencing health prob-
lems related to her diagnosis of MS. The mesosystem
assessment for the family consists of identifying the
schools the children attend, neighborhood/friends,
extended family, and religious affiliation. The old-
est daughter is a college student who travels home
on weekends to help the family. The second daugh-
ter is in a local middle school and can walk back
and forth to her school. The youngest child, a boy,
attends an all-day preschool and is transported by
his parents or other parents from the preschool.
The family has attended a Protestant church in the
neighborhood. The family lives in a house in an
older established neighborhood, and has made
friends through the schools, church, and neighbor-
hood contacts. Part of the extended family (grand-
parents) live nearby, and all of the family members
get together for the holidays; neither parent has
siblings who live nearby. The exosystem assessment
shows that father Robert works 40 hours a week for
an industrial plant at the edge of town, and he
drives back and forth daily. The father has some
job stress, because he is in a middle-management
position. His salary is average for middle-class fam-
ilies in the United States. State and county funding
to the area schools, libraries, and recreational facil-
ities are always a struggle in this community. The
town has physicians/clinics of all specialties and has
one community hospital. An assessment of the
macrosystem shows that this community is largely
white, with only 10% of residents from ethnic
backgrounds. Most people in the community em-
brace a Christian ethic.
The value system includes a family focus and a
strong work ethic. Many of the people prefer the
Democratic Party. In terms of the time-related
contexts of the chronosystem, a few things are no-
table. These time-related events put more stress on
the family than usual nonnormative events. Linda’s
disease process with MS has exacerbated in recent
times, placing additional strain on the family sys-
tem. Robert’s own dad died in the past year, leaving
him extra responsibility for his widowed mother in
addition to his responsibility for his own children
and now ill wife. The economy in the country and
region is going through a recession, leading people
to feel some fear about their economic futures.
Robert had hoped that his wife could go to work
part-time when their youngest child went to
school, but that no longer seems to be a possibility.
The family assessment would include how the fam-
ily at each of the earlier-mentioned levels is influ-
enced by the changes brought about by Linda’s
progressing debilitative disease and recent hospi-
talization. The family is experiencing disturbance
at many of these levels.
Interventions include the following possibilities.
In general, nurses can also look for additional sys-
tems with which the family could interact to help
support family functioning during this family ill-
ness event. Nurses could make home visits to assess
the living arrangements of the family and to deter-
mine how the home could be changed to accom-
modate a wheelchair/walker. The nurses should
talk with the parents about their relationship to the
schools, church, and extended family support sys-
tems. The parents might be advised to inform the
school(s), church, workplace, and grandparents of
what is happening to their family. The nurses could
make suggestions relative to Travis’s current be-
havior with having to go to all-day preschool. The
nurses also could explore with the family the larger
external environment, including community re-
sources (e.g., Multiple Sclerosis Society, visiting
nurse service, or counseling services). The nurses
should contact the medical doctor(s) and discharge
planning nurse at the hospital to obtain informa-
tion to interpret the diagnosis, prognosis, and treat-
ment of MS to the family. The nurses might talk
to the family about how their faith can be of help
86 Foundations in Family Health Care Nursing
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during these tough times and what their primary
concerns are as a family. The nurses should get in
touch with the social workers at the hospital to co-
ordinate care and social well-being strategies for
the posthospitalization period, as well as in the
future. Strategies may involve application to social
security for the disabled. A family care planning
meeting should be set up to involve as many care-
takers and stakeholders as possible.
Evaluation of the interventions would consist
of follow-up with the family through periodic
home visits and telephone contact. The nurses
would be interested in how the family is adapting
to its situation, how the father is dealing with the
extra responsibility, how the children are coping,
and the physical and mental health of the mother.
Because MS is a chronic progressive relapsing dis-
order, a plan would be put into place for periodic
evaluations that might involve changing the plan
of care.
Strengths and Weaknesses of
the Bioecological Systems Theory
The strength of the bioecological perspective is that
it represents a comprehensive and holistic view of
human/family development—a bio/psycho/socio/
cultural/spiritual approach to the understanding of
how humans and families develop and adapt to the
larger society. It includes both the nature (biological)
and nurture (environmental contexts) aspects of
growth and development for both individuals and
families. It directs our attention to factors that
occur within, as well as to the layered influences of
factors that occur outside individuals and families.
The bioecological perspective provides a valuable
complement to other theories that may offer
greater insight into how each aspect of the holistic
approach affects individuals and families over time.
The strength of this theory is also part of the
weakness of this approach. The different systems
show nurses what to think about that may affect the
family, but the direction of how the family adapts is
not specifically delineated in this theory. In other
words, the bio/psycho/socio/cultural/spiritual as-
pects of human/family growth and development are
not detailed enough to define how individuals/
families can accomplish or adapt to these contextual
changes over time. Aspects of the theory require
further delineation and testing, that is, the influence
of biological and cognitive processes and how they
interact with the environment.
Chronic Illness Framework
The Chronic Illness Framework was proposed by
Rolland (1987, 1994) to help foster understanding
of how chronic illness affects the family. Chronic
illness is a complex concept that has vast implica-
tions for the individual and the family. Rolland’s
conceptual framework has evolved over time and
helps nurses think about multiple factors of the ill-
ness and how these influence family functioning.
This framework, sometimes called the Family Sys-
tems and Chronic Illness Framework (Rolland,
1987), has three major elements:
■ Illness types
■ Time phases of the illness
■ Family functioning
The illness types include the following aspects
of chronic illness: onset of the illness, the course
of the disease, the outcome of the illness, and the
degree of incapacitation of the family member.
The aspect of time addresses how issues facing
families and individuals vary depending on the
timing in the course of the illness, such as initial
diagnosis, long chronic illness day-to-day adjust-
ment phase, or terminal phase. All of these factors
influence the third major concept of family func-
tioning. Family functioning includes the demands
of managing the illness and the family strengths
and vulnerabilities. All of these aspects of the
Chronic Illness Framework are detailed in the fol-
lowing section. Figure 3-7 depicts the different
factors that influence how the family experiences
the chronic illness of a family member. The over-
arching factor for families living with chronic ill-
ness is the degree of uncertainty about how the
illness will present and affect the family. According
to the Chronic Illness Framework, it is possible to
have at a minimum 24 different configurations of
the factors that influence chronic illness and family
systems (Rolland, 1987).
Illness Types
Onset of Illness: Gradual or Acute
When chronic illness has an acute onset (e.g.,
a spinal cord injury, a traumatic brain injury, or
an amputation), the family reacts by rapid mobi-
lization of crisis mode strategies to manage the
situation. These strategies include short-term
role flexibility, accessing previously used problem-
solving approaches in other crises, and the ability
Theoretical Foundations for the Nursing of Families 87
3921_Ch03_067-104 05/06/14 10:56 AM Page 87
to use outside resources. As the acute phase of a
chronic condition morphs into a chronic illness—or
if a chronic illness has a gradual onset, such as
multiple sclerosis, Parkinson’s disease, or renal
failure—the family adaptation occurs over a pro-
longed period of time.
Course of Illness: Progressive, Constant,
or Relapsing/Episodic
The issues families manage are affected by the
course of the illness. Chronic disease, however, is
seldom a pure typology and over time it often
changes from one course to another. When indi-
vidual family members have a progressive chronic
illness, the disability occurs in a stepwise fashion.
It requires families to make gradual changes in
their roles to adapt to the losses and needs of the
family member as the illness progresses in severity.
The families must address perpetual symptoms,
which requires continual adaptation mixed with
minimal periods of relief. Thus, families usually
experience exhaustion from the demands of the
illness. As the disease progresses, new family roles
develop and family caregiving tasks evolve over
time. Examples of a progressive chronic illness are
amyotrophic lateral sclerosis (ALS), Huntington’s
disease, and Parkinson’s disease.
Chronic illness is considered constant when,
after the initial chaos and stress caused by the acute
illness/injury, it evolves into a semipermanent
change in condition that is stable and somewhat
predictable. The potential for family stress and
exhaustion are present, but to a lesser degree than
in a progressive chronic illness. Examples of a con-
stant chronic illness are spinal cord injuries, cere-
brovascular stroke, and myocardial infarction.
With a relapsing/episodic chronic illness, fam-
ilies alternate between stable low symptomology
periods and periods of exacerbation with flare-up.
Families are strained by both the frequency of the
transition between stable and unstable crisis
modes of functioning and the ongoing uncer-
tainty of when the remission and exacerbation
will occur. The uncertainty and unpredictability
of relapsing is very taxing on families. Examples
88 Foundations in Family Health Care Nursing
Initial/crisis Mid Terminal
Illness Types
Family Functioning Time Phases
Demands of
illness
Family strengths
and vulnerabilities
Chronic Illness Framework
(Rolland, 1987)
Non-fatal
Unpredictable
Fatal
Incapacitating
Non-incapacitating
Progressive
Constant
Relapsing
Gradual
Acute
FIGURE 3-7 Family systems and illness model.
3921_Ch03_067-104 05/06/14 10:56 AM Page 88
of relapsing/episodic chronic illness are multiple
sclerosis, bipolar disorder, schizophrenia, and lupus.
Outcome: Trajectory of Illness
The trajectory of the illness and the possible out-
come affect family functioning. Stress is constant
and adaptation strained when the chronic illness has
a fatal outcome that results in a shortened life span,
such as metastatic cancers, ALS, Huntington’s
disease, or cystic fibrosis. Other chronic illnesses
do not shorten the individual’s life span, so they
do not generate the same amount of family adjust-
ment as other outcomes. Types of chronic illness
that do not shorten a person’s life span are arthri-
tis, chronic fatigue syndrome, and gluten intoler-
ance. Some chronic illnesses both shorten the life
span of the individual and have the potential for
sudden death. Examples of these types of chronic
illness include congestive heart failure and auto-
nomic dysreflexia with a high spinal cord injury.
These types of chronic illness present with a dif-
ferent set of family stressors and adaption needs
than either of the two other possible outcomes or
trajectories.
Outcome: Incapacitation
The extent and kind of incapacitation of the illness
places different stressors on the family and the in-
dividual living with chronic illness. Incapacitation
can present in a variety of ways, such as cognitive
(Alzheimer’s disease, Parkinson’s disease), energy
production or expenditure (congestive heart failure,
chronic obstructive pulmonary disease), impaired
mobility (stroke, multiple sclerosis, cerebral palsy),
disfigurement (amputation, scars), or social stigma
(mental health disorders or HIV).
Time Phases
The stress responses and needs of the family
change depending on the time phase of the illness.
The needs of the family when a chronic illness is
newly diagnosed are different than when a person
adjusts and lives with the illness over time. The
needs change again when ill family members enter
the terminal phase of their chronic illness. Specific
family stressors or needs for each time phase are
outlined below.
Initial/Crisis Time Phase
When family members are first diagnosed with a
chronic illness they must (1) establish a positive
working relationship with health care providers,
(2) gather information about the diagnosis, and
(3) accept the diagnosis (Danielson, Hamel-Bissell,
& Winstead-Fry, 1993). All diagnoses have the po-
tential to create stress. The diagnostic process cre-
ates stress and uncertainty in families. Families
vary in their ability to seek resources or informa-
tion and to understand the ramifications of the
diagnosis. For some families, the diagnosis is un-
expected and can put the family in a crisis mode.
For other families, the diagnosis is confirmation of
their observations and concerns and so may result
in relief. Families may or may not accept the diag-
nosis. Some families may deny the diagnosis, and
others will question the diagnosis and seek other
opinions. Once a medical diagnosis is given to
families, the diagnosis becomes public knowledge,
which means that everyone who knows the diag-
nosis has a reaction and response. Families may
choose to keep the information within their family
unit or be discriminating about whom they tell.
Nurses have a central role in providing informa-
tion to families with new diagnoses and helping
them navigate the health care system. Family
education is critical to the health outcomes, specif-
ically integrating the medical treatment plan into
family life and family roles.
Mid–Time Phase
The mid–time phase is considered the “long haul”
of chronic illness (Rolland, 1987, 2005a). Rolland
(2005a) outlined the salient issues in this phase:
(1) pacing and avoiding burnout, (2) minimizing
relationship skew between the patient and other
family members, (3) sustaining autonomy for
all members of the family, (4) preserving or
redesigning individual and family development
goals within the constraints of the illness, and
(5) sustaining intimacy in the face of threatened
loss. According to Danielson, Hamel-Bissell, and
Winstead-Fry (1993), this time phase also includes
the following challenges: (1) accept the treatment
plan, (2) reorganize family roles, and (3) maintain
a positive relationship with health care providers.
Once families accept the diagnosis, they move into
what Danielson et al. (1993) called “illness career,”
which is a way that families adapt and adjust to the
illness on a day-by-day basis. The major challenge
of the family is to redefine what is a normal bal-
anced family life while also facing uncertainty
about the future (Rolland, 2005a, 2005b). During
this phase, families are constantly adjusting to the
situation caused by the illness. Families vary in
Theoretical Foundations for the Nursing of Families 89
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their ability to adjust to the illness situation—the
more problems adjusting, the more stress families
will experience. Family role stress, role strain, and
role overload can occur when the family lives with
illness over a long period.
Family tasks in this phase are to redefine normal,
adjust to social stigma or altered relationships
caused by the disability or illness, continue to main-
tain positive relationships with the health care
team, and successfully grieve the loss caused by the
disability or chronic condition. The family must
adjust continually to the remission and exacerba-
tions of the illness. One of the major tasks is to bal-
ance the needs of the family and the needs of ill
family members (Danielson et al., 1993).
Families must adapt to the demands of the
chronic condition; thus, a whole body of informa-
tion has evolved around family coping and family
adaptation with medical regimens. How do families
promote the recovery of ill members while preserv-
ing their energy to nurture other family members
and perform other family functions? An example of
an appropriate intervention would be to help fam-
ilies find respite care for family caregivers so that
caregivers do not “burn out.” The family relation-
ship with the health care provider(s) is a critical
component of this phase. Families expect that they
will be active members of the treatment team.
Terminal Time Phase
The nursing tasks in the terminal time phase con-
sist of working with the family through the dying
of the family member, through the grieving
process, to integrating the loss into the family and
family life. Nurses can work with families to change
focus from managing the illness to comfort care
strategies and working on the concept of “letting
go” (Rolland, 2005a). During this time, an impor-
tant nursing role is to help families with the cascade
of decisions that occur in the terminal phase. Each
family member will respond differently to the loss,
and the family will be forever changed by the loss.
The loss requires the family to adjust and adapt
to the finality and to develop or generate a different
sense of identity of family without the person
(see Chapter 10).
Family Functioning
Families, as a whole, experience health events.
When family members become ill, it triggers a
stress response in the family to adapt to the needs
of the individual and the family member. As
presented earlier in the chapter, the demands of the
illness can take multiple forms, depending on the
illness type and the time phases of the illness. As
each family is unique in its strengths and vulnerabil-
ities, the ways in which families adapt to the chal-
lenge of chronic illness are vast and too numerous
to list, which reinforces the opening statements of
this chapter that nurses who bring knowledge of a
variety of models, theories, and conceptual frame-
works to their practice tailor their practice to the
family needs by building on the strength of families
in creative ways.
Application of the Chronic Illness
Framework to the Jones Family
The Jones family is living with, adjusting to, and
stressed and influenced by Linda’s chronic illness
of multiple sclerosis (MS). The course of MS is a
gradual onset of symptoms. Linda was diagnosed
after the birth of her second child, Katie; therefore,
the Jones family has been living with her chronic
illness for 13 years. The course of illness for Linda is
typical of many individuals with MS. For the first
10 years, or in the Jones’ case 13 years, of the dis-
ease, the most common type of MS is relapsing MS
(RMS), which is characterized by exacerbation
(relapses and attacks) followed by partial recovery
periods (remission) and no disease progression be-
tween exacerbations. For most people with MS,
after this initial course of disease, the presentation
changes to progressive. At this point in time,
Linda’s illness has morphed to secondary progres-
sive MS (SPMS), which is characterized by a
steadily worsening disease course with or without
occasional exacerbations, minor partial recoveries,
or plateaus until death. Approximately 50% of
people with RMS will convert to SPMS within
10 years (Lewis, Dirksen, Heitkemper, Bucher, &
Camera, 2011). The Jones family remains in the
mid–time phase of the illness trajectory, but the
change in the course of Linda’s illness brings
with it increased incapacitation and an unpredictable
outcome.
The Jones family is constantly adjusting and
adapting to the course of Linda’s illness and in-
creasing incapacitation. The family is exhausted
with managing this change; solutions that have
worked for this family in the past are not working
now. The family roles need to be supported, rede-
fined, or renegotiated. Each of the members is ex-
periencing role stress and strain. Linda is having
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to “let go” of more of her mothering role and ac-
tions. Her self-concept regarding her illness has
been changed. Robert is having role overload with
all the changes in his life. The intimacy needs of
the couple are stressed by these changes. Amy is
thinking of staying home and not going to college
in another town. Katie is now a struggling student.
Travis is a full-day student in a preschool. Grand-
mother, Elise, will no longer be living independ-
ently as she moves into the Jones family home to
assume new roles as caretaker to the children and
Linda. All the role changes, and seeing Linda get
worse or more incapacitated, creates uncertainty
about the future for each member and the family
as a whole. Each family member experiences un-
certainty differently based on age, family roles,
role expectations, and the developmental needs of
each person.
Family functioning is of central concern for the
family nurse as he helps Linda and the family learn
to adapt to new treatment and regimen manage-
ment issues and establish a new normal day-to-day
long-haul balance. One aspect of family function-
ing the nurse can help with revolves around family
roles. The nurse can assist by exploring options for
care and potential future decisions the family may
face as Linda’s health continues to decline and the
time phase changes to terminal.
Strengths and Weaknesses of the Chronic
Illness Framework
The strength of this descriptive framework is that
it outlines how multiple factors of a chronic illness
can be grouped in a variety of ways that affect
family functioning. Rolland’s (1987, 1994) con-
ceptual framework depicts the complexity of
chronic illness and the diversity of potential family
responses to chronic illness. It may appear at first
glance that families have similar circumstances
given the same chronic illness, but on closer as-
sessment it becomes clear that families’ experi-
ences of the different components of this
framework result in different family stressors and
strengths.
The weakness of this model is the same as the
strengths in that the complexity of chronic illness is
not predictive. Because this framework depicts how
the individual’s illness progresses from more of a
medical model, it is easy for nurses to focus only on
that part of the framework and not think about the
overarching aspect of the family as a whole.
Family Assessment and Intervention
Model
The Family Assessment and Intervention Model,
originally developed by Berkey and Hanson
(1991), is based on Neuman’s Health Care Sys-
tems Model (Hanson, 2001; Hanson & Mischke,
1996; Kaakinen & Hanson, 2010). Neuman’s
model and theoretical constructs are based on
systems theory and were extended and modified
to focus on the family rather than on the individ-
ual (Neuman & Fawcett, 2010). Figure 3-8 de-
picts the Family Assessment and Intervention
Model.
According to the Family Assessment and Inter-
vention Model, families are viewed as a dynamic,
open system interacting with their environment.
One of the roles for families is to help buffer their
members, or protect the family as a whole, from
perceived threats to the family system. The core of
the family system comprises basic family structure,
function, processes, and energy/strength resources.
This basic family structure must be protected at all
costs, or the family ceases to exist. The family de-
velops normal lines of defense as an adapting mech-
anism and abstract flexible protective lines of
defense when the system is threatened by signifi-
cant stressors. Family systems are vulnerable to
tensions produced when stressors in the form
of problems or concerns penetrate the family’s lines
of defenses. Families also have lines of resistance to
help prevent penetration into the basic family core.
The lines of defense and resistance depicted in the
model (see Fig. 3-8) demonstrate how unexpected/
unwanted health status changes can affect the basic
family unit or core.
Families are subject to imbalance from normal
homeostasis when stressors (e.g., physical or mental
health problems) penetrate families’ flexible and
normal lines of defense. Furthermore, the stressors
can challenge the families’ lines of resistance, which
have been put in place to maintain stability and to
prevent penetration of the basic family defense sys-
tem. In other words, health events cause families to
react to stressors created by changes in the health
status of a family member. Families vary in their
response to the stressors and in their ability to
cope, depending on how deeply the stressors pen-
etrate the basic family unit and how capable or ex-
perienced the family is in adapting to maintain its
stability.
Theoretical Foundations for the Nursing of Families 91
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92 Foundations in Family Health Care Nursing
Area 1: Wellness-health promotion activities:
problem identification and family factors at line of defense and resistance
A
re
a
3:
R
es
to
ra
tio
n
of
fa
m
ily
s
ta
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lit
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d
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ily
fu
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tio
ns
a
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ev
el
s
of
p
re
ve
nt
io
n/
in
te
rv
en
tio
n
A
rea 2: Fam
ily’s reaction and instability at lines of defense and resistance
CORE
Basic family structure,
function, process,
and energy resources
Norm
al line of defense
N
orm
al line of defense
Se
co
nd
ar
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pr
ev
en
tio
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in
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/in
te
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Lines
of resistance
Lines of resistance
Te
rtia
ry
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Flexib
le line of defense
StressorsStre
ssor
s
F
lex
ib
le
lin
e o
f d
efense
Stre
sso
rs
Stressors
FIGURE 3-8 Family Assessment and Intervention Model.
Reconstitution or adaptation is the work the
family undertakes to preserve or restore family sta-
bility after stressors penetrate the family lines of
defense and resistance. This process alters the
whole of the family. The model addresses three
areas: (1) wellness–health promotion activities—
problem identification and family factors at lines of
defense and resistance, (2) family reaction and in-
stability at lines of defense and resistance, and
(3) restoration of family stability and family func-
tioning at levels of prevention and intervention.
The Family Assessment and Intervention Model
focuses specifically on what causes family stress and
how families react to this stress. One critical con-
cept is to build on the family’s strengths by helping
the family identify its problem-solving strategies.
The basic assumptions of this family-focused
model are listed in Box 3-1.
3921_Ch03_067-104 05/06/14 10:56 AM Page 92
Family Systems Stressor-Strength Inventory
Berkey and Hanson (1991) developed an assess-
ment, intervention, and measurement tool, the
Family Systems Stressor-Strength Inventory (FS3I),
to help guide nurses working with families who
are undergoing stressful health events and to
build on the strengths of the family. The FS3I is
divided into three sections: (1) family systems
stressor—general, (2) family stressors—specific,
and (3) family system strengths. The tool helps
nurses assess family stability by gathering infor-
mation on family stressors and strengths. The as-
sessment of general, overall stressors is followed
by an assessment of specific issues or problems,
such as birth of first child, automobile accident,
or family divorce. The tool helps to identify fam-
ily strengths to help determine potential or actual
problem-solving abilities of the family system.
Examples of family strengths could include sup-
portive extended family, health insurance, and
availability of family counseling.
The FS3I is intended for use with multiple fam-
ily members. Individual members of the family can
complete the FS3I, or the entire family can sit
together and complete the assessment. The nurse
meets with family members and interviews them to
clarify their perceived general stressors, specific
stressors, and family strengths as identified by the
family members.
After the interview, the nurse completes the
quantitative summary and enters each respondent’s
score on the graph. Recording individual scores on
the graph allows for a comparison of the family re-
sponses and visually shows the variability among
family members’ perceptions of general and specific
health stressors. The nurse synthesizes the inter-
view information gleaned from all the family par-
ticipants on the qualitative summary. Together, the
nurse and family develop a family care plan with in-
tervention strategies tailored to the individual fam-
ily needs and built on the strengths of the family.
A major benefit of using the FS3I for family as-
sessment and intervention planning is that both
quantitative and qualitative data are used to deter-
mine the level of prevention and intervention
needed: primary, secondary, or tertiary (Pender,
Murdaugh, & Parsons, 2006). Primary prevention
Theoretical Foundations for the Nursing of Families 93
BOX 3-1
Basic Assumptions for Family Assessment and Intervention Model
■ Although each family has a unique family system, all
families have a common basic structure that is a com-
posite of common, known factors or innate characteris-
tics within a normal given range of response.
■ Family wellness is on a continuum of available energy
to support the family system in its optimal state.
■ The family, in both a state of wellness or illness, is a
dynamic composite of interrelationships of variables
(physiological, psychological, sociocultural, developmental,
and spiritual).
■ A myriad of environmental stressors can affect the fam-
ily. Each stressor differs in its potential for disturbing the
family’s stability level or normal line of defense. The
specific family interrelationships (physiological, psycho-
logical, sociocultural, developmental, and spiritual) af-
fect the degree to which a family is protected by its
flexible lines of defense against possible reactions to
the stressors.
■ Families evolve a normal range of response to the envi-
ronment, which is called a normal line of defense. The
normal line of defense is flexible or accordion-like as it
moves to protect the family.
■ When the flexible line of defense is no longer capable
of protecting the family or family system against the
environmental stressor, the stressor is said to break
through the normal line of defense.
■ Families have an internal resistance factor called the line
of resistance that functions to stabilize and return the
family to its usual wellness state (normal line of de-
fense), or possibly to a higher level of stability after an
environmental stressor reaction.
■ Primary prevention is general knowledge that is applied
in family assessment and intervention for identification
and mitigation of risk factors associated with environ-
mental stressors to prevent possible reaction.
■ Secondary prevention is symptomatology after reaction
to stressors, appropriate ranking of intervention priori-
ties, and treatment to reduce their noxious effects.
■ Tertiary prevention is the adjusting processes that take
place as reconstitution begins and maintenance factors
move the client back in the circular manner toward
primary prevention.
■ The family is in a dynamic, constant energy exchange
with the environment.
Adapted from Berkey, K. M., & Hanson, S. M. (1991). Pocket guide to family assessment and intervention. St. Louis,
MO: Mosby–Year Book.
3921_Ch03_067-104 05/06/14 10:56 AM Page 93
focuses on moving the individual and family to-
ward a state of improved health or toward health-
promotion activities. Primary interventions include
providing families with information about their
strengths, supporting their coping and functioning
capabilities, and encouraging movement toward
health through family education. Secondary inter-
ventions attain system stability after stressors or
problems have invaded the family core. Secondary
interventions include helping the family to handle
its problems, helping family members to find and
use appropriate treatment, and intervening in
crises. Tertiary prevention is designed to maintain
system stability through intervention strategies that
are initiated after treatment has been completed.
Coordination of care after discharge from the hos-
pital and postdischarge rehabilitation services are
examples of tertiary prevention.
The Family Assessment and Intervention Model
focuses on the family as client. The Family Systems
Stressor-Strength Inventory (FS3I) was developed to
provide a concrete, focused assessment and interven-
tion instrument that helps families identify current
family stressors and strengths and that assists nurses
and families in planning interventions to meet family
needs. The model and inventory represent a nursing
model made for nursing care of families. An updated
blank copy of the instrument, with instructions for
administration and a scoring guide, can be found in
Appendix A. A summary of a completed instrument
applied to the case study follows.
Application of the Family Assessment and
Intervention Model With the Jones Family
The FS3I was used to assess stressors (problems)
and strengths (resources) that the Jones family had
to cope with their situation. Robert and Linda were
interviewed together by the nurse, but each person
completed a separate FS3I. Scores were tallied
using the scoring guide for the FS3I. Amy was away
attending college, and Katie and Travis were too
young to complete the assessment instrument.
The general stressors were viewed similarly by
both Robert and Linda, and these stressors were
assessed as more serious by the nurse than by the
couple. Robert, Linda, and the nurse concurred
that the general stress level was high. The specific
stressors were perceived slightly differently by
Robert and Linda. The following figures summa-
rize information gained from the Jones family:
Figure 3-9, which applies the FS3I to the Jones
Family; Figure 3-10, which presents an FS3I quan-
titative summary of family system stressors, general
and specific, for the Jones family; Figure 3-11,
which lists FS3I family and clinician perception
scores of the Jones family; Figure 3-12, which is an
FS3I qualitative summary, family and clinician, of
the Jones family; and Figure 3-13, which provides
an FS3I family care plan for the Jones family.
The qualitative summary, family and clinician
form in Figure 3-12, serves as the groundwork for
the family care plan. This form synthesizes infor-
mation pertaining to general stressors, specific
stressors, family strengths, and the overall func-
tioning and physical and mental health of the fam-
ily members. The nurse completed this form using
her assessment skills with information obtained
from the verbal exchange and the FS3I.
The family members and the nurse perceived
that the chronic and debilitating diagnosis of MS
was the major general stressor. Linda’s specific
stressors included her growing inability to func-
tion as a wife and mother; her physical problems,
such as increasing physical weakness, swallowing
challenges, pain, vision impairment, vertigo/tinnitus,
constipation, urinary infections; and her mental
health issues, such as guilt, anxiety, and depression.
Specific stressors for Robert included his worry
about Linda’s health; loss of his life’s partner in
taking care of the family, household maintenance,
and raising children; fear of the unknown future
and health outcomes; loss of sexual expression with
his wife; and financial worries. The strengths of
the family were seen as communication between
the couple, religious faith, the social support net-
work of extended family, and the availability of
good health providers. The overall family func-
tioning was considered to be as good as could be
expected under the circumstances. Where the
mother’s physical health was compromised, the
father’s physical health was good. Both Linda
and Robert expressed mental health concerns.
Overall, the nurse perceived that this family
had the strengths it needed to deal with both the
general and specific stressors. After completing a
genogram (Fig. 3-3) and ecomap (Fig. 3-4) of this
family unit, the nurse concluded that the family
was being supported by community/family re-
sources. These social support systems are impor-
tant factors in coping with stress, and the nurse
concluded that this family could use assistance in
utilizing these resources.
94 Foundations in Family Health Care Nursing
3921_Ch03_067-104 05/06/14 10:56 AM Page 94
Theoretical Foundations for the Nursing of Families 95
The Family Systems Stressor-Strength Inventory (FS
3
I) is an assessment and measurement instrument
intended for use with families (see Chapter 14). It focuses on identifying stressful situations occurring in
families and the strengths families use to maintain healthy family functioning. Each family member is asked
to complete the instrument on an individual form before an interview with the clinician. Questions can be
read to members unable to read.
After completion of the instrument, the clinician evaluates the family on each of the stressful situations
(general and specific) and the strengths they possess. This evaluation is recorded on the family member form.
The clinician records the individual family member’s score and the clinician perception score on the
Quantitative Summary. A different color code is used for each family member. The clinician also completes
the Qualitative Summary, synthesizing the information gleaned from all participants. Clinicians can use
the Family Care Plan to prioritize diagnoses, set goals, develop prevention and intervention activities, and
evaluate outcomes.
Family Name Jones Date April 18, 2009
Family Member(s) Completing Assessment Robert and Linda
Ethnic Background(s) “American all mixed up”
Religious Background(s) Protestant
Referral Source Neurologist For Linda
Interviewer Meredith Rowe, RN
noitacudE pihsnoitaleR ylimaF
Members in Family Age Marital Status (highest degree) Occupation
1. Robert Father 48 yr Married MS Software engineer
2. rekam emoHdeirraMry 34rehtoMadniL
3. Amy Daughter 19 yr Single
4. Katie Daughter 13 yr Single
5. Travis Son 4 yr Single
6.
Family’s current reasons for seeking assistance:
Linda MS is progressing family feels stressed.
FIGURE 3-9 Family System Stressor-Strength Inventory: Jones family. (Source: Hanson, S. M. H.
[2001]. Family health care nursing: Theory, practice, and research [2nd ed.]. Philadelphia, PA: F. A. Davis, with
permission.)
The family care plan for the Jones family was
developed by the nurse in concert with the family
members who completed the FS3I (see Fig. 3-13).
The family care plan addresses the diagnosis
of general and specific family systems stressors
and family systems strengths that support the
family care plan and the goals of the family
and the clinician(s): interventions/prevention
activities—primary/secondary/tertiary, and outcome/
evaluation/replanning proposed for this family.
The goal of this family care plan was to achieve a
restoration of optimum health that could provide
homeostasis and stability for this family, as well
as more positive health outcomes than the family
could reach at the beginning of their health
challenges. The outcome/evaluation/replanning
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96 Foundations in Family Health Care Nursing
DIRECTIONS: Graph the scores from each family member inventory by placing an “X” at the appropriate location. (Use first name
initial for each different entry and different color code for each family member.)
YLIMAF)LARENEG( SROSSERTS SMETSYS YLIMAF SYSTEMS STRESSORS (SPECIFIC)
SCORES FOR FAMILY MEMBER CLINICIAN SCORES FOR FAMILY MEMBER CLINICIAN
WELLNESS PERCEPTION PERCEPTION WELLNESS PERCEPTION PERCEPTION
AND STABILITY SCORE SCORE AND STABILITY SCORE SCORE
0.50.5
X8.48.4 √1
6.46.4
4.4
X
4.4
X
4.2
X√1
4.2
X√2
4.0 X√ 0.42
8.38.3
6.36.3
4.34.3
2.32.3
0.30.3
8.28.2
6.26.2
4.24.2
2.22.2
0.20.2
8.18.1
6.16.1
4.14.1
2.12.1
0.10.1
*PRIMARY Prevention/Intervention Mode: Flexible Line 1.0-2.3 √1 = Robert
*SECONDARY Prevention/Intervention Mode: Normal Line 2.4-3.6
*TERTIARY Prevention/Intervention Mode: Resistance Lines 3.7-5.0 √2 = Linda
*Breakdowns of numerical scores for stressor penetration are suggested values.
FIGURE 3-10 Quantitative summary of family systems stressors, general and specific: Jones family.
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Theoretical Foundations for the Nursing of Families 97
DIRECTIONS: Graph the scores from the inventory by placing an “X” at the appropriate location and connect with a line. (Use first name
initial for each different entry and different color code for each family member.)
FAMILY SYSTEMS STRENGTHS
SUM OF STRENGTHS
AVAILABLE FOR PREVENTION/ FAMILY MEMBER CLINICIAN
EROCS NOITPECREPEROCS NOITPECREPEDOM NOITNEVRETNI
5.0
4.8
4.6
4.4 X
4.2
√2
4.0
3.8
3.6
3.4 √1
3.2
3.0
2.8
2.6
2.4
2.2
2.0
1.8
1.6
1.4
1.2
1.0
3.2-0.1eniL elbixelF :edoM noitnevretnI/noitneverP YRAMIRP* √1 = Robert
*SECONDARY Prevention/Intervention Mode: Normal Line 2.4-3.6
*TERTIARY Prevention/Intervention Mode: Resistance Lines 3.7-5.0 √2 = Linda
*Breakdowns of numerical scores for stressor penetration are suggested values.
FIGURE 3-11 Family and clinician perception scores: Jones family.
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98 Foundations in Family Health Care Nursing
Summarize general stressors and remarks of family and clinician. Prioritize stressors according to importance
to family members.
The major general stressor of the family is the DX of MS and the impact of the progressive disabling illness on the entire
family.
A. Summarize specific stressors and remarks of family and clinician.
Linda’s specific stressors: growing disability to function as wife/mother,
physical signs of impairment and guilt, anxiety, and depression. Robert’s
specific stressors: loss of fully functional wife, fear of unknown; loss
of sexual expression and finances.
B. Summarize differences (if discrepancies exist) between how family members and clinicians view effects
of stressful situation on family.
Each family member has some different stressors, but share in common the
fears, anxiety, helplessness, sadness over their losses due to Linda’s
condition. Nurse views general and specific stressors higher than family
rates them.
C. Summarize overall family functioning.
Functioning as best as can be expected. Physical health in question. Mental
health standing up so far. Family addressing issues one by one.
D. Summarize overall significant physical health status for family members.
Mother’s physical health compromised. Father’s physical health is okay.
E. Summarize overall significant mental health status for family members.
Mother is frustrated and anxious. Expressed guilt, which makes her
depressed. Father is also frustrated and worried about Linda, the children,
and finances.
Summarize family systems strengths and family and clinician remarks that facilitate family health and stability.
Couple communication, religious faith, social support of extended family and
believe they have competent caring health care providers.
FIGURE 3-12 Qualitative summary, family and clinician: Jones family.
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Theoretical Foundations for the Nursing of Families 99
Prevention/Intervention Mode
Diagnosis: General
and Specific Family
System Stressors
Dx of MS
weakness of
swallowing, pain,
vision impairment,
vertigo/tinnitus,
constipation,
urinary infections,
guilt/anxiety,
depression, sexual
dysfunction, over-
load for caregiver
father.
Couple
communication,
religious faith,
social support of
extended family,
good medical care.
Restoration of
stability and
homeostasis at
each level of
progressive
chronic illness.
Support of family
changes, connect
family with MS
family support
group, locate
part-time family
helper for home,
coordinate with
other medical
groups involved,
set up rehabilitation,
and physical
therapy.
Couple receives
counseling, pain
and symptom
management;
involve social
worker to look at
community agencies
to offer assistance.
Evaluation to be done
once plan
implemented.
Family Systems
Strengths Supporting
Family Care Plan
Primary, Secondary,
or Tertiary
Prevention/
Intervention Activities
Outcomes Evaluation
and Replanning
Goals for Family
and Clinician
FIGURE 3-13 Family care plan: Jones family.
section of the family care plan remains blank for
now because it is dependent on feedback from the
interventions proposed for the family, as well as
the physical and mental health status of the entire
family.
Strengths and Weaknesses
The strength of the FS3I approach is that both
quantitative and qualitative data are used to deter-
mine the level of prevention and intervention
needed: primary, secondary, or tertiary. The in-
strument is brief, is easy to administer, and yields
data to compare one family member with another
member and one family with another family. The
weakness of this model and instrument is that they
focus only on family strengths and stressors rather
than all the dimensions of the family as a unit. This
model and instrument hold much promise for nurs-
ing assessment of families, but more work needs to
be done on this approach. See Box 3-2 for a com-
parison of the approaches.
SUMMARY
By understanding theories and models, nurses are
better prepared to think creatively and critically
about how health events affect the family. This
chapter introduced nurses to the concept of theory-
guided, evidence-based family nursing practice.
It presented the relationship between theory,
practice, and research, and explained crucial as-
pects of theory. The chapter then explored five
theories and models for the nursing care of fami-
lies and applied the theories to the case study in
the chapter:
■ Family Systems Theory
■ Developmental and Family Life Cycle Theory
■ Bioecological Theory
■ Chronic Illness Framework
■ Family Assessment and Intervention Model
The chapter revealed how nurses can practice
family nursing differently with the Jones family ac-
cording to the different theoretical perspectives.
The following points highlight critical concepts
that are addressed in this chapter:
■ No single theory, model, or conceptual
framework adequately describes the complex
relationships of family.
■ No one theoretical perspective gives nurses
a sufficiently broad base of knowledge and
understanding to guide assessment and
interventions with all families.
■ No one theoretical perspective is better,
more comprehensive, or more correct than
another.
■ Nurses who draw from multiple theories
are more effective in tailoring their nursing
practice and family interventions. Using
multiple theories substantially increases the
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100 Foundations in Family Health Care Nursing
BOX 3-2
Comparison of Theories as They Apply to the Jones Family
Family Systems Theory
Conceptual
Family is viewed as a whole. What happens to the family
as a whole affects each individual family member, and
what happens to individuals affects the totality of the fam-
ily unit. Focus is on the circular interactions among mem-
bers of the family system, resulting in functional or
dysfunctional outcomes.
Assessment
The family may be assessed together or individually.
Assessment questions relate to the interaction between
the individual and the family, and the interaction between
the family and the community in which the family lives.
Intervention Examples
■ Complete a family genogram to understand patterns
and relationships over several generations over time.
■ Complete family ecomap to see how individuals/family
relate to the community around them.
■ Collect data about the family as a whole and about
individual family members.
■ Conduct care-planning sessions that include family
members.
Strengths
Focus is on family as a whole or its subsystems, or both. It
is a generally understood and accepted theory in society.
Weaknesses
Theory is broad and general. It does not give definitive
prescriptions for interventions.
Application to Jones Family
All members of the Jones family are affected by the
mother’s progressive chronic health condition and
changes. Family structure, functions, and processes of the
family are influenced, changing family roles and dynamics.
Everyone in the family has his or her own concerns and
needs attention from health care professionals.
Family Developmental and Life Cycle Theory
Conceptual
Family is viewed as a whole over time. All families go
through similar developmental processes starting with the
birth of the first child to death of the parents. Focus is on
the life cycle of families and represents normative stages
of family development.
Assessment
The family may be assessed together or individually. As-
sessment questions relate to the normative predictable
events that occur in family life over time. It also includes
nonnormative, unexpected events.
Intervention Examples
■ Conduct family interview to determine where family is
in terms of cognitive, social, emotional, spiritual, and
physical development.
■ A family genogram and ecomap should be completed.
■ Determine the normative and nonnormative events that
have occurred to the family as a whole or to individuals
within the family.
■ Analyze how an individual’s growth and developmental
milestones may affect the family developmental trajectory.
Strengths
Focus is on the family as a whole. The theory provides a
framework for predicting what a family will experience at
any given stage in the family life cycle so that nurses can
offer anticipatory guidance.
Weaknesses
The traditional linear family life cycle is no longer the
norm. Modern families vary widely in their structure and
roles. Divorce, remarriage, gay parents, and never-married
parents have changed the traditional trajectory of growth
and developmental milestones. The theory does not
focus on how the family adapts to the transitions from
one stage to the other; rather, it simply predicts what
transitions will occur.
Application to Jones Family
The Jones family is in the stages of “families with adoles-
cents” and “launching young adults.” The nonnormative
health condition of the mother is changing the predictable
normative course of development for the individuals and
for the family as a whole. These health events will change
the cognitive, social, emotional, spiritual, and physical de-
velopment as the family shifts to integrate new roles into
their lives as family members.
Bioecological Systems Theory
Conceptual
Bioecological systems theory combines children’s biologi-
cal disposition and environmental forces that come to-
gether to shape the development of human beings. This
theory has a basis in both developmental theory and sys-
tems theory to understand individual and family growth.
It combines the influence of both genetics and environ-
ment from the individual and family with the larger eco-
nomic/political structure over time. The basic premise is
that individual and family development are contextual
over time. The different levels of the theory that apply to
the family at any one point in time vary depending on
what is happening at that time. Therefore, the interaction
of the systems vary over time as the situation changes.
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Theoretical Foundations for the Nursing of Families 101
BOX 3-2
Basic Assumptions for Family Assessment and Intervention Model—cont’d
Assessment
Assess all levels of the larger ecological system when
interviewing the family. Determine the microsystem,
mesosystem, exosystem, macrosystem, and chronosys-
tem of the individual and of the family as a whole.
Intervention Examples
■ Conduct a family interview to determine the family’s sta-
tus in relationship to four locational/spatial contexts and
one time-related context.
■ A family genogram and ecomap should be completed.
■ Determine how individuals are doing in relationship to
their entire environment, which includes immediate
family, extended family, home, school, and community.
■ Analyze the family in its smaller and larger contextual
aspects.
Strengths
Focus is on a holistic approach to human/family develop-
ment. A bio/psycho/socio/cultural/spiritual approach to
understanding how individuals and families develop and
change/adapt over time in their society is a more com-
plete approach.
Weaknesses
This holistic approach is not specific enough to define
contextual changes over time. Nor can the larger context
in which individuals/families are embedded be predicted
or controlled.
Application to Jones Family
■ Microsystem: The Jones family consists of school-age
children living at home. The parental roles have been
traditional until recent health events.
■ Mesosystem: Family has much interaction with schools,
church, and extended family.
■ Exosystem: Family influenced by father’s work at the fac-
tory and other institutions in the community.
■ Macrosystem: Family consistent with community culture,
attitudes, and beliefs. Their community is largely Cau-
casian, middle class, and Christian.
■ Chronosystem: At this time in the illness story of the
Jones family with the mother’s illness changing, the
family situation changes and moves between stability
and crisis.
Chronic Illness Framework
Conceptual
This is a conceptual framework and not a theory. There-
fore, each aspect of the framework represents several
fields of inquiry relative to chronic illness. The framework
has been built and data have been organized to provide a
coherent way of thinking about families when a member
has a chronic illness. The areas of inquiry that inform this
model are onset of the chronic illness, course of illness,
outcome or trajectory of the chronic illness, outcome rela-
tive to degree of incapacitation from the illness, time
phase of the illness, and family functioning.
Assessment
In this framework, it is important first to analyze the vari-
ous aspects of the specific type of chronic illness. Each
aspect presents a different type of stress or challenge for
the family based on the particular chronic illness. The last
aspect of the framework, family function, requires the
family nurse to explore how the specific chronic illness
affects this specific family based on the demands of the
illness and the family strengths and vulnerabilities.
Intervention Examples
■ Complete a family genogram and ecomap.
■ Implement a plan of care to help facilitate family adap-
tation and coping strategies.
■ Work with families by building on the family strengths to
adjust family roles to help the family with managing the
stressors identified in this specific chronic illness for this
specific family.
Strengths
The Chronic Illness Framework is designed to support
family-centered nursing care. Focus is on family strengths
and vulnerabilities through identified predictable stressors
experienced by families who are in that aspect of the
chronic illness. Anticipatory guidance can be provided as
the chronic illness may progress through typical trajecto-
ries or times phases.
Weaknesses
The model is not specific enough to identify precise ways
families adapt; rather, it is more of a guideline to typical
stressors and coping tasks that may happen when a fam-
ily member develops a chronic illness.
Application to Jones Family
The Jones family is struggling to adapt during the rocky
chronic illness phase. As the mother’s illness has changed
from being episodic to progressive in nature, the family is
stressed with adapting to the mother losing ambulation
and needing more physical support than in the past. The
family is in a constant state of stress as it adjusts to the
new patterns, regimens, and roles. The family is grieving
as Linda becomes more disabled.
Family Assessment and Intervention Model
Conceptual
Families are viewed as dynamic, open systems in interac-
tion with their environment. A major role of family is to
Continued
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102 Foundations in Family Health Care Nursing
BOX 3-2
Basic Assumptions for Family Assessment and Intervention Model—cont’d
help protect itself from events such as illness that may
threaten the family’s inner core. The inner core of the
family consists of family structure, function, process, and
energy/strength resources and must be protected or the
family ceases to exist. Adaptation is the work the family
undertakes to preserve/restore family stability. This model
evolved out of nursing and builds on general systems
theory, stress theory, and change theory.
Assessment
Family may be assessed together, but all individuals
are asked to complete the measurement instrument. The
Family Systems Stressor-Strength Inventory (FS3I)
is administered to determine general family stressors, spe-
cific family stressors, and family system strengths. The
stressors that affect the balance of the family strengths are
analyzed to assist the family to achieve stability.
Intervention Examples
■ The FS3I is completed by all adult individuals in the
family. Scores are derived from the measurement scales
and then analyzed. Health care providers meet with
families to review results and provide different interven-
tion strategies based on the specific stressors, how the
family is coping, and what strengths are brought to the
situation.
■ A family genogram and ecomap should be completed.
Strengths
The model and instrument provide a structured approach
to family assessment and intervention based on both
quantitative and qualitative data. These data help deter-
mine the primary, secondary, and tertiary levels of preven-
tion and intervention. The focus on family strengths is
unique to this model and approach.
Weaknesses
This model is used specifically when families enter
the health care system. It is applicable when health
problems have come up that cause stressors. Although
the model per se is applicable to all families in terms
of life stressors and strengths, the administration of
the FS3I is specific to only these two aspects of the
health events.
Application to Jones Family
The adults in this family were interviewed together,
with each person completing the FS3I. General stressors
and specific stressors were rated similarly by each
member of the couple. The nurse also rated her per-
ceptions of the family stressors and strengths. Overall
family physical and mental functioning were also rated.
The nurse concluded that this family had the strengths
it needed to deal with both the general and specific
stressors.
likelihood that the family will be able to
achieve stability and health as a family unit.
■ Theories that inform the nursing of families
should be the “gold standard” of nursing
practice (Segaric & Hall, 2005); hence, family
nursing is a theory-guided, evidence-based
nursing practice.
This chapter presents ways of providing excel-
lent family health care nursing that is theory driven
and evidence based. By using different lenses to
view family care problems, different solutions and
options for care and interventions become avail-
able. Clearly, no one theoretical perspective gives
all nurses in all settings a sufficiently broad base of
knowledge on which to assess and intervene with
the complex health events experienced by families.
What is crucial is that nurses use multiple theoret-
ical perspectives to guide their practice with the
nursing care of families.
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105
Family Nursing Assessment
and Intervention
c h a p t e r 4
Joanna Rowe Kaakinen, PhD, RN
Aaron Tabacco, BSN, RN, Doctoral Candidate
C r i t i c a l C o n c e p t s
■ Families are complex social systems with which nurses interact in many ways and in many different contexts; the use
of a logical systematic family nursing assessment approach is important.
■ In the context of family nursing, the creative nurse thinker must be aware of possibilities, be able to recognize the
new and the unusual, be able to decipher unique and complex situations, and be inventive in designing an approach
to family care.
■ Nurses determine through which theoretical and practice lens(es) to analyze the family event.
■ Knowledge about family structures, functions, and processes inform nurses in their efforts to optimize and provide in-
dividualized nursing care, tailored to the uniqueness of every family system.
■ Nurses begin family assessment from the moment of contact or referral.
■ Family stories are narratives that nurses construct in framing, contextualizing, educating, communicating, and provid-
ing interpretations of their family clients’ needs as they exercise clinical judgment in their work.
■ Interacting with families as clients requires knowledge of family assessment and intervention models, as well as
skilled communication techniques so that the interaction will be effective and efficient for all parties.
■ The family genogram and ecomap are both assessment data-gathering instruments. The therapeutic interaction that
occurs with the family while diagramming a genogram or ecomap is itself a powerful intervention.
■ Families’ beliefs about health and illness, about nurses and other health care providers, and about themselves are es-
sential for nurses to explore in order to craft effective approaches to family interventions and promote health literacy.
■ Families determine the level of nurses’ involvement in their health and illness journeys, and nurses seek to tailor their
work and approach accordingly.
■ Nurses and families who work together and build on family strengths are in the best position to determine and priori-
tize specific family needs; develop realistic outcomes; and design, evaluate, and modify a plan of action that has a
high probability of being implemented by the family.
■ The final step in working with families should always be for nurses to engage in critical, creative, and concurrent re-
flection about the family, their work with the family, and professional self-reflection of their practice.
3921_Ch04_105-136 05/06/14 10:58 AM Page 105
Families are complex social systems. Therefore, the
use of logical, systematic approaches to assess and
intervene with family clients is essential for several
reasons: (1) to ensure that the needs of the family
are met, (2) to uncover any gaps in the family plan
of action, and (3) to offer multiple supports and re-
sources to the family. Nurses use a variety of as-
sessment models to collect information about
families. In concert with the family, this informa-
tion is used to develop the interventions families
use to manage their current health event. Some as-
sessment and intervention instruments are based
on theoretical models, and some are developed
using a psychometric approach to instrument de-
velopment. Built on the traditional nursing process
as visualized by Doenges, Moorhouse, and Murr
(2013) (Fig. 4-1) and combined with the Outcome
Present State Testing Model (Pesut & Herman,
1999), this chapter presents a dynamic systematic
critical reasoning method to conducting a family as-
sessment and tailoring interventions to meet family
needs (Fig. 4-2) and applies it to a case study. The
chapter explores assessment strategies, including
how to select assessment instruments, determine
the need for interpreters, assess for health literacy,
diagram family genograms, and develop family
ecomaps. Intervention strategies follow assessment
strategies to assist nurses and families in shared de-
cision making. The chapter concludes with a brief
introduction to three family assessment and inter-
vention models that were developed by nurses.
FAMILY NURSING ASSESSMENT
Central to the delivery of safe and effective family
nursing care is the nurse’s ability to make accurate
assessments, identify health problems, and tailor
plans of care. Each step of working with families,
whether applied to individuals within the family or
the family as a whole, requires a thoughtful, delib-
erate reasoning process. Nurses decide what data
to collect and how, when, and where those data are
collected. Nurses determine the relevance of each
new piece of information and how it fits into the
emerging family story. Before moving forward,
nurses decide whether they have obtained sufficient
information on problem and strength identifica-
tion, or whether gaps exist that require additional
data gathering.
Nurses must always be aware that “common” in-
terpretations of data may not be the “correct” in-
terpretation in any given situation, and that
commonly expected signs and symptoms may not
appear in every case or in the same data pattern
presentation. The ability of nurses to be open to
the unexpected and to be alert to unusual or differ-
ent responses is critical to determining the primary
106 Foundations in Family Health Care Nursing
NURSE
Int
er
ve
nti
on
Int
er
ve
nti
on
Int
er
ve
nti
on
E
valuation
E
valuation
E
valuation
Planning
Planning
Planning
Assessment Assessment
N
ur
si
ng
di
ag
no
si
s
N
ur
si
ng
di
ag
no
si
s
N
ur
si
ng
di
ag
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si
s
CLIENT
FIGURE 4-1 Nursing process model.
3921_Ch04_105-136 05/06/14 10:58 AM Page 106
needs confronting the family. Nurses should be
able to perceive that which is not obvious and to
understand how this family story is similar to or
different from other family stories.
The family nursing assessment includes the fol-
lowing steps:
■ Assessment of the family story: The nurse
gathers data from a variety of sources to see
the whole picture of the family experience.
■ Analysis of family story: The nurse clusters
the data into meaningful patterns to see how
the family is managing the health event. The
family needs are prioritized using a Family
Reasoning Web.
■ Design of a family plan of care: Together, the
nurse and family determine the best plan of
care for the family to manage the situation.
■ Family intervention: Together, the nurse and
family implement the plan of care incorporat-
ing the most family-focused, cost-effective,
and efficient interventions that assist the fam-
ily to achieve the best possible outcomes.
■ Family evaluation: Together, the nurse and
family determine whether the outcomes are
being reached, are being partially reached,
or need to be redesigned. Is the care plan
working well, does a new care plan need to
be put into place, or does the nurse/family
relationship need to end?
■ Nurse reflection: Nurses engage in critical,
creative, and concurrent reflection about them-
selves and their own family experiences, the
family client, and their work with the family.
Engaging Families in Care
Background and First Contact
Nurses encounter families in diverse health care
settings for many different kinds of problems and
circumstances. Every family has a story about how
the potential or actual health event influences its
individual members, family functioning, and man-
agement of the health event. Nurses are charged
with gathering, sifting, organizing, and analyzing
the data to craft a clear view of the family’s story.
Nurses filter data gathered in the story through dif-
ferent views or approaches, which affects how they
think about the family as a whole and each individ-
ual family member. For example, a family who is
faced with a new diagnosis of a chronic illness
would have different needs than a family who is
faced with a member dying of an end-stage chronic
Family Nursing Assessment and Intervention 107
FIGURE 4-2 Family nursing assessment model.
NURSE
Over Time
Fa
mi
ly
int
erv
en
tio
ns
Fa
mi
ly
int
er
ve
nti
on
s
Fam
ily evaluation
Fam
ily evaluation
Design
family plan
Design
family plan
Assess
family story
Nurse
Reflection
Nurse
Reflection
Assess
family story
A
na
ly
ze
fa
m
ily
s
to
ry
A
na
ly
ze
fa
m
ily
s
to
ry
FAMILY
3921_Ch04_105-136 05/06/14 10:58 AM Page 107
illness. Nurses might use different strategies if the
patient is in the acute hospital setting, is in an as-
sisted living center, or is living at home.
The underlying theoretical approach used by the
nurses working with families influences how they ask
questions and collect family data. For example, if the
family is worried about how their 2-year-old child
will react to a new baby, such as in the Bono family
case study presented later in this chapter, the nurse
may elect to base the assessment and interventions
on a family systems theoretical view, or the devel-
opmental family life cycle theoretical view. Refer to
Chapter 3 for a detailed discussion of working with
families from different theoretical perspectives.
Data collection, which is the first part of assess-
ment, involves both subjective and objective family
information that is obtained through direct obser-
vation, examination, or in consultation with other
health care providers. In all cases, family assess-
ment begins from the first moment that the family
is referred to the nurse. Following are some cir-
cumstances in which a family is referred to a nurse:
■ A family is referred by the hospital to a home
health agency for wound care on the feet of a
client with diabetes.
■ A couple seeks advice for managing their
busy life with three children as the mother
returns home from the hospital following an
unplanned cesarean section.
■ A family calls the Visiting Nurse Association
to request assistance in providing care to a
family member with increasing dementia.
■ A school nurse is asked by the school psy-
chologist to conduct a family assessment with
a family who is suspected of child neglect.
■ A physician requests a family assessment with
a child who has nonorganic failure to thrive.
■ A family with a member with critical care
needs is asked to make decisions about life-sus-
taining treatments in the intensive care unit.
Making Community-Based Appointments
As soon as a family is identified, the nurse begins
to collect data about the family story. Sources of
data that can be collected before contacting a fam-
ily for a home or clinic appointment are listed in
Box 4-1. Specifically, the nurse needs to know the
following information:
■ The reason for the referral or requested visit
■ The family knowledge of the visit or referral
■ Specific medical information about the
family member with the health problem
■ Strategies that have been used previously
■ Insurance sources for the family
■ Family problems identified by other health
providers
■ Family demographic data, when available,
such as the number of people and ages of
family members or basic cultural background
information
■ The need for an interpreter
Before contacting the family to arrange for the
initial appointment, the nurse decides whether the
most appropriate place to conduct the appointment
is in the family’s home or the clinic/office. The type
of agency where the nurse works may dictate this
decision. Advantages and disadvantages of a home
setting and a clinic setting are listed in Table 4-1.
Contacting the family for the appointment pro-
vides valuable information about the family. It is im-
perative that the nurse be confident and organized
when making the initial contact. Information that
is important for the nurse to note is whether the
family acts surprised that the referral was made,
shows reluctance in setting up a meeting, or ex-
presses openness about working together. The fam-
ily also gathers important information about the
nurse during the initial interaction. For example,
family members will notice whether the nurse takes
time to talk with them, uses a lot of words they do
not understand, or appears organized and open to
working with the family. To facilitate the best pos-
sible outcomes in engaging families for the first
time to learn about their health and illness story,
effective nurses consider the family and its needs
as central to starting a successful collaboration.
108 Foundations in Family Health Care Nursing
BOX 4-1
Sources of Pre-encounter Family Data
■ Referral source: includes data that indicated a problem
for this family, as well as demographic information
■ Family: includes family members’ views of the prob-
lem, surprise that the referral was made, reluctance to
set up the meeting, avoidance in setting up the ap-
pointment
■ Previous records: in the health care systems or that are
sent by having the client sign a release for information
form, such as process logs, charts, phone logs, or
school records
3921_Ch04_105-136 05/06/14 10:58 AM Page 108
This relationship of trust begins from the moment
of first contact with families. As a guide, Box 4-2
outlines steps to follow when making an appoint-
ment with a family.
Family Assessments in Acute Care Settings
Nurses in acute care settings encounter families of
their individual patients on a daily basis. The de-
gree to which nurses feel comfortable and to which
they demonstrate clinical competence engaging
families varies widely. Because cost (which is con-
strained) determines length of stay, and because of
the increasing population of people with chronic
illnesses who experience poor symptom manage-
ment, nurses in acute care settings often feel there
is little time to engage families effectively. Lack of
time, in fact, has been identified by nurses as the
primary barrier to engaging families, though there
are many other barriers as well, including nurse
bias, safety concerns, and negative nurse attitudes
about working with families (Duran, Oman, Abel,
Koziel, & Szymanski, 2007; Gurses & Carayon,
2007; Svavarsdottir, 2008). It is critical that nurses
gain skill and comfort with families in acute care
settings as families are the primary caregivers fol-
lowing the discharge of their family members.
Families need the help of nurses in order to learn
how to provide effective postdischarge care tasks;
engage in shared decision making with health care
providers; understand the current health status of
their ill family member; balance admission and
postdischarge family life demands; assist families
during critical events such as resuscitation; and
solve ethical dilemmas that arise in the care of their
loved one. With this extensive list of needs, it is es-
sential that nurses in acute care settings intention-
ally and effectively engage families.
Nurses in acute care settings encounter a num-
ber of challenges, including caring for several
acutely ill persons simultaneously, managing the
informational needs of interdisciplinary providers,
and coping with a host of distractions that often
keep nurses away from the bedside. Therefore,
Family Nursing Assessment and Intervention 109
Table 4-1 Advantages and Disadvantages of Home Visits Versus Clinic Visits
Home Visit
Advantages
• Opportunity to see the everyday family environment.
• Observe typical family interactions because the family
members are likely to feel more relaxed in their physical
space.
• More family members may be able to attend the meeting.
• Emphasizes that the problem is the responsibility of the
whole family and not one family member.
Disadvantages
• Home may be the only sanctuary or safe place for the
family or its members to be away from the scrutiny of others.
Therefore, conducting the meeting in the home would invade
or violate this sanctuary and bring the clinical perspective into
this safe world.
• The nurse must be highly skilled in communication, specifically
setting limits and guiding the interaction, or the visit may have
a more social tone and not be efficient or productive.
Clinic Visit
• Conducting the family appointment in the office or clinic al-
lows for easier access to consultants.
• The family situation may be so strained that a more formal,
less personal setting will facilitate discussions of emotion-
ally charged issues.
• May reinforce a possible culture gap between the family
and the nurse.
BOX 4-2
Setting Up Family Appointments
■ Introduce yourself.
■ State the purpose of the requested meeting, including
who referred the family to the agency.
■ Do not apologize for the meeting.
■ Be factual about the need for the meeting but do not
provide details.
■ Offer several possible times for the meeting, including
late afternoon or evening.
■ Let the family select the most convenient time that
allows the majority of family members to attend.
■ Offer services of an interpreter, if required.
■ Confirm date, time, place, and directions.
3921_Ch04_105-136 05/06/14 10:58 AM Page 109
nurses seeking to engage families, complete family
assessments, and implement family interventions
must be highly efficient and creative. A number of
specific strategies and tools must be used to accom-
plish a meaningful and effective experience. For an
in-depth discussion of acute care family nursing
needs, refer to Chapter 14.
Using Interpreters With Families
It is critical for the nurse to determine whether an
interpreter is needed during the family meeting, be-
cause the number of families who do not speak Eng-
lish is increasing. For 55.4 million Americans,
English is not the primary language spoken in the
home, and 13.6 million of these people speak English
poorly or not at all (U.S. Census Bureau, 2010). Lan-
guage barriers have been found to complicate many
aspects of patient care, including comprehension and
adherence to plans of care. Furthermore, language
barriers have been found to contribute to adverse
health outcomes, compromised quality of care,
avoidable expenses, dissatisfied families, and in-
creased potential for medical mistakes (Flores, Abreu,
Barone, Bachur, & Lin, 2012; Schenker, Wang,
Selig, Ng, & Fernandez, 2007). Thus, it is essential
that nurses who are not bilingual use interpreters
when working with non–English-speaking families.
The types of interpreters that nurses solicit to
help work with families have the potential to influ-
ence the quality of the information exchanged and
the family’s ability to follow the suggested plan of
action. One of the most common types of inter-
preters used are bilingual family members or
friends, called ad hoc family interpreters. The prob-
lems with using family members as interpreters are
that they have been found to buffer information,
alter the meaning of the content, or make the de-
cision for the person for whom they are interpret-
ing (Flores et al., 2012; Ledger, 2002). The ad hoc
family member interpreter also has been found to
lack important language skills, especially when it
comes to medical interpretation (Flores et al., 2012;
Khwaja et al., 2006; Ledger, 2002). If the ad hoc
family member interpreter is a child, the informa-
tion that is being discussed may be frightening or
the topic may be too personal and sensitive
(Ledger, 2002). Using ad hoc family interpreters
also raises confidentially issues (Gray, Hilder, &
Donaldson, 2011). Therefore, it is not ideal for
nurses to use a family member for interpretation,
especially if another choice is available.
If a qualified medical interpreter cannot come to
the meeting in the family home, the nurse should
plan to use a speaker phone so that the professional
interpreter can be involved in the conversation with
the family. One of the problems with using an in-
terpreter on the phone is that interpreters do not
have the advantage of seeing the family members
in person and cannot observe nonverbal commu-
nication (Bethell, Simpson, & Read, 2006; Gray
et al., 2011; Herndon & Joyce, 2004). Also, the
nurse should be aware that using a telephone inter-
preter introduces another outside person into the
family setting, which may be perceived as imper-
sonal by the family (Bethell et al., 2006).
Family-Centered Meetings and Care
Conferences
Family-centered care (FCC) principles should be
applied in all interactions between nurses and fam-
ilies or other health care providers. According to
the Institute for Patient and Family Centered Care
(IPFCC) (2013), the core principles of FCC are re-
spect and dignity, information sharing, participa-
tion, and collaboration. The goal of FCC is to
increase the mutual benefit of health care provision
for all parties, with a focus on improving the satis-
faction and outcomes of health care for families
(IPFCC, 2013). By utilizing these principles in all
aspects of the family nursing approach from assess-
ment through intervention and evaluation, nurses
can facilitate exchanges of shared expertise, which
lead to better holistic health outcomes.
During the initial interaction with families, it is
critical for nurses to introduce themselves to the
family, meet all the family members present, learn
about the family members not present, clearly state
the purpose for working with the family, outline
what will happen during this session, and indicate
the length of time the meeting will last. Taking
these actions demonstrates respect for family mem-
bers and their unique story. To continue with this
precedent, the nurse needs to develop a systematic
plan for the first and all following family meetings.
This focus on respect, dignity, and collaboration in
initial meetings helps to establish relationships that
are therapeutic; effective, satisfying partnerships
between nurses and families are critical as they
work together toward health-related goals.
Nurses who use a therapeutic approach to
family meetings have found that their focus on
family-centered care increased, and that their
110 Foundations in Family Health Care Nursing
3921_Ch04_105-136 05/06/14 10:58 AM Page 110
communication skills with families became more
fluid with experience (Harrison, 2010; Martinez,
D’Artois, & Rennick, 2007). When nurses use
therapeutic communication skills with families, the
families report feeling a stronger rapport with the
nurse, an increased frequency of communication
between families and the nurse occurs, and families
perceive these nurses to be more competent
(Harrison, 2010; Martinez et al., 2007).
Conducting family meetings not only requires
skilled communication strategies but also requires
knowledge of family assessment and intervention
models. Nurses use a variety of data collection and
assessment instruments to help gather information
in a systematic and efficient manner. Therefore, it
is important that the instruments be carefully se-
lected so they are family friendly and render infor-
mation pertinent to the purpose of working with
the family.
FAMILY NURSING ASSESSMENT
MODELS AND INSTRUMENTS
Nurses practice family nursing using a variety of
tools. The following three family assessment
models have been developed by family nurses.
The Family Assessment and Intervention Model
and the FS3I were developed by Berkey-Mischke
and Hanson (1991). Friedman developed the
Friedman Family Assessment Model (Friedman
et al., 2003). The Calgary Family Assessment
Model (CFAM) and Calgary Family Intervention
Model (CFIM) were developed by Wright and
Leahey (2013). These three approaches vary in
purpose, unit of analysis, and level of data col-
lected. Table 4-2 has a detailed comparison of the
essential components of these three family assess-
ment models.
Family Nursing Assessment and Intervention 111
Table 4-2 Comparison of Family Assessment Models Developed by Family Nurses
Name of model
Citation
Purpose
Theoretical underpinnings
Level of data collected
Settings in which primarily
used
Units of analysis
Calgary Family Assessment
and Intervention Model
Wright & Leahey (2013)
Conceptual model and mul-
tidimensional approach to
families that looks at the fit
among family functioning,
affective, and behavioral
aspects
Systems:
Cybernetics Communica-
tion Change Theory
Qualitative:
Nominal
Outpatient
Community
Family as system
Friedman Family Assess-
ment Model
Friedman, Bowden, & Jones
(2003)
Concrete, global family as-
sessment interview guide
that looks primarily at fami-
lies in the larger community
in which they are embedded
Developmental
Structural-functional
Family stress-coping
Environmental
Qualitative:
Nominal
Outpatient
Community
Family as client
Family as component
of society
Family Assessment and In-
tervention Model and the
Family System Stressor-
Strength Inventory (FS3I)
Berkey-Mischke & Hanson
(1991)
Hanson (2001)
Concrete, focused measure-
ment instrument that helps
families identify current
family stressors and builds
interventions based on
family strengths
Systems:
Family systems
Neuman systems
Model:
Stress-coping theory
Quantitative:
Ordinal and interval
Qualitative:
Nominal
Inpatient
Outpatient
Community
Family as context
Family as client
Family as system
Family as component
of society
(continued)
3921_Ch04_105-136 05/06/14 10:58 AM Page 111
Family Assessment and Intervention
Model
The Family Assessment and Intervention Model,
originally developed by Berkey-Mischke and Hanson
(1991), is presented in greater detail in Chapter 3,
but is worth exploring in this context as well. The
Family Assessment Intervention Model is based on
Neuman’s health care systems model (Kaakinen &
Hanson, 2005).
According to the Family Assessment and Inter-
vention Model, families are subject to tensions
when stressed. The family’s reaction depends on
how deeply the stressor penetrates the family unit
and how capable the family is of adapting to main-
tain its stability. The lines of resistance protect the
family’s basic structure, which includes the family’s
functions and energy resources. The family core
contains the patterns of family interactions and
strengths. The basic family structure must be pro-
tected at all costs or the family ceases to exist. Re-
constitution or adaptation is the work the family
undertakes to preserve or restore family stability.
This model addresses three areas: (1) health pro-
motion, wellness activities, problem identification,
and family factors at lines of defense and resistance;
(2) family reaction and instability at lines of defense
and resistance; and (3) restoration of family stability
and family functioning at levels of prevention and
intervention.
The FS3I is the assessment and intervention tool
that accompanies the Family Assessment and In-
tervention Model. The FS3I is divided into three
sections: (1) family systems stressors—general; (2)
family stressors—specific; and (3) family system
strengths. An updated copy of the instrument, with
instructions for administration and a scoring guide,
can be found in Appendix A.
Nurses can assess family stability by gathering in-
formation on family stressors and strengths. The
nurse and family work together to assess the family’s
general, overall stressors, and then specific family
problems. Identified family strengths give an indi-
cation of the potential and actual problem-solving
abilities of the family system. A plus to the FS3I ap-
proach is that both quantitative and qualitative data
are used to determine the level of prevention and
intervention needed. The family is actively involved
in the discussions and decisions. Moreover, this as-
sessment and intervention approach focuses on
family stressors and strengths, and provides a theo-
retical structure for family nursing.
Friedman Family Assessment Model
The Friedman Family Assessment Model (Friedman
et al., 2003) is based on the structural-functional
framework and developmental and systems theory.
This assessment model takes a macroscopic approach
to family assessment by viewing families as subsystems
of the wider society, which includes institutions de-
voted to religion, education, and health. Family is
considered an open social system and this model fo-
cuses on family’s structure, functions (activities and
purposes), and relationships with other social systems.
The Friedman model is commonly used when the
family-in-community is the setting for care (e.g., in
community and public health nursing). This approach
enables family nurses to assess the family system as a
whole, as a subunit of the society, and as an interac-
tional system. Box 4-3 delineates the general assump-
tions of this model (Friedman et al., 2003, p. 100).
112 Foundations in Family Health Care Nursing
Table 4-2 Comparison of Family Assessment Models Developed by Family Nurses—cont’d
Strengths
Weaknesses
Conceptually sound
Not concrete enough to be
useful as a guideline unless
the provider has studied this
model and approach in detail
Comprehensive list of areas
to assess family
Large quantities of data
that may not relate to the
problem
No quantitative data
Short
Easy to administer
Yields data to compare
one family member with
another family member
Assess and measure
focused presenting
problem
Narrow variable
3921_Ch04_105-136 05/06/14 10:58 AM Page 112
Structure refers to how a family is organized and
how the parts relate to each other and to the whole.
The four basic structural dimensions are role sys-
tems, value systems, communication networks, and
power structure. These dimensions are interrelated
and interactive, and they may differ in single-par-
ent and two-parent families. For example, a single
mother may be the head of the family, but she may
not necessarily take on the authoritarian role that
a traditional man might in a two-parent family. In
turn, the value systems, communication networks,
and power structures may be quite different in the
single-parent and two-parent families as a result of
these structural differences.
Function refers to how families go about meet-
ing the needs of individuals and meeting the pur-
poses of the broader society. In other words, family
functions are what a family does. The functions of
the family historically are discussed in Chapter 1,
but the following specific family functions are con-
sidered in this approach:
■ Pass on culture, religion, ethnicity.
■ Socialize young people for the next genera-
tion (e.g., to be good citizens, to be able to
cope in society through education).
■ Exist for sexual satisfaction and reproduction.
■ Provide economic security.
■ Serve as a protective mechanism for family
members against outside forces.
■ Provide closer human contact and relations.
The Friedman Family Assessment Model form
consists of six broad categories of interview ques-
tions: (1) identification data, (2) developmental
stage and history of the family, (3) environmental
data, (4) family structure (i.e., role structure, family
values, communication patterns, power structure),
(5) family functions (i.e., affective functions, social-
ization functions, health care functions), and
(6) family stress and coping. Each category has sev-
eral subcategories (Friedman et al., 2003).
Friedman’s assessment was developed to provide
guidelines for family nurses who are interviewing
a family. The guidelines categorize family informa-
tion according to structure and function. Fried-
man’s Family Assessment Form exists in both a
long form and a short form. The long form is quite
extensive (13 pages), and it may not be possible to
collect all of the data in one visit. Moreover, all the
categories of information listed in the guidelines
may not be pertinent for every family. Like other
approaches, this model has its strengths and weak-
nesses. One problem with this approach is that it
can generate large quantities of data with no clear
direction as to how to use all of the information in
diagnosis, planning, and intervention. The strength
of this approach is that it addresses a comprehen-
sive list of areas to assess the family, and that a short
assessment form has been developed to highlight
critical areas of family functioning. The short form,
which is included in Appendix B, outlines the types
of questions the nurse can ask.
Calgary Family Assessment Model
The CFAM by Wright and Leahey (2013) blends
nursing and family therapy concepts that are
grounded in systems theory, cybernetics, commu-
nication theory, change theory, and a biology of
recognition. The following concepts from general
systems theory and family systems theory make up
the theoretical framework for this model (Wright
& Leahy, 2013, pp. 21–44):
■ A family system is part of a larger suprasys-
tem and is also composed of many subsys-
tems.
■ The family as a whole is greater than the sum
of its parts.
■ A change in one family member affects all
family members.
■ The family is able to create a balance be-
tween change and stability.
■ Family members’ behaviors are best under-
stood from a perspective of circular rather
than linear causality.
Family Nursing Assessment and Intervention 113
BOX 4-3
Underlying Assumptions of Friedman’s
Family Assessment Model
■ A family is a social system with functional require-
ments.
■ A family is a small group possessing certain generic
features common to all small groups.
■ The family as a social system accomplishes functions
that serve the individual and society.
■ Individuals act in accordance with a set of internalized
norms and values that are learned primarily through
socialization.
Source: Friedman, M. M., Bowden, V. R., & Jones, E. G. (2003).
Family nursing: Research, theory & practice (5th ed.). Upper
Saddle River, NJ: Prentice Hall/Pearson Education.
3921_Ch04_105-136 05/06/14 10:58 AM Page 113
Cybernetics is the science of communication
and control theory; therefore, it differs from sys-
tems theory. Systems theory helps change the focus
of one’s conceptual lens from parts to wholes. By
contrast, cybernetics changes the focus from sub-
stance to form. Wright and Leahey (2013) pull two
useful concepts from cybernetics theory:
■ Families possess self-regulating ability.
■ Feedback processes can simultaneously occur
at several system levels with families.
Communication theory in this model is based on
the work of Watzlawick and colleagues (Watzlawick,
Weakland, & Fisch, 1967, 1974). Communication
represents the way that individuals interact with
one another. Concepts derived from communica-
tion theory used in the CFAM are as follows
(Wright & Leahey, 2013):
■ All nonverbal communication is meaningful.
■ All communication has two major channels
for transmission: digital (verbal) and analogi-
cal (nonverbal).
■ A dyadic relationship has varying degrees of
symmetry (similarity) and complementarity
(divergence, contrast, or complementary
characteristics).
■ All communication has two levels: content
and relationship.
Helping families to change is at the very core of
family nursing interventions. Families need a bal-
ance between change and stability. Change is re-
quired to make things better, and stability is required
to maintain some semblance of order. A number of
concepts from change theory are important to this
family nursing approach (Wright & Leahey, 2013):
■ Change is dependent on the perception of
the problem.
■ Change is determined by structure.
■ Change is dependent on context.
■ Change is dependent on co-evolving goals
for treatment.
■ Understanding alone does not lead to change.
■ Change does not necessarily occur equally in
all family members.
■ Facilitating change is the nurse’s responsibility.
■ Change occurs by means of a “fit” or meshing
between the therapeutic offerings (interven-
tions of the nurse) and the bio-psycho-
social-spiritual structures of family members.
■ Change can be the result of a myriad of
causes.
Figure 4-3 shows the branching diagram of the
CFAM (Wright & Leahey, 2013, p. 48). The as-
sessment questions that accompany the model are
organized into three major categories: (1) struc-
tural, (2) developmental, and (3) functional. Nurses
examine a family’s structural components to answer
these questions: Who is in the family? What is the
connection between family members? What is the
family’s context? Structure includes family compo-
sition, sex, sexual orientation, rank order, subsys-
tems, and the boundaries of the family system.
Aside from interview and observation, strategies
recommended to assess structure include the
genogram and the ecomap.
The second major assessment category in the
Calgary approach is family development, which in-
cludes assessment of family stages, tasks, and at-
tachments. For example, nurses may ask, “Where
is the family in the family life cycle?” Understand-
ing the stage of the family enables nurses to assess
and intervene in a more purposeful, specific, and
meaningful way. There are no actual instruments
for assessing development, but nurses can use de-
velopmental tasks as guidelines.
The third area for assessment in the CFAM is
family functioning. Family functioning reflects how
individuals actually behave in relation to one an-
other, or the “here-and-now aspect of a family’s
life” (Wright & Leahey, 2013, p. 116). Aspects of
family functioning include activities of daily life,
such as eating, sleeping, meal preparation, and
health care, as well as emotional communication,
verbal and nonverbal communication, communica-
tion patterns (the way communication and re-
sponses are passed back and forth between
members), problem solving, roles, influence and
power, beliefs, and alliances and coalitions. Wright
and Leahey indicate that nurses may assess in all
three areas for a macroview of the family, or they
can use any part of the approach for a microassess-
ment. Wright and Leahey (2013) developed a com-
panion model to the CFAM, the CFIM. This
intervention model provides concrete strategies by
which nurses can promote, improve, and sustain
effective family functioning in the cognitive, affec-
tive, and behavioral domains. The strength of the
Calgary Assessment and Intervention Model is that
it is a conceptually sound model that incorporates
114 Foundations in Family Health Care Nursing
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multiple theoretical aspects into working with fam-
ilies. The strength of this approach is also its weak-
ness in that unless you are intimately knowledgeable
with the model and the interventions, it is difficult
to implement in acute care settings.
Family Assessment Instruments
Because there are approximately 1,000 family-
focused instruments that have been developed and
used in assessing family-related variables (Touliatos,
Perlmutter, & Straus, 2001), the selection of the ap-
propriate instrument can be complex. Sometimes,
a simple questionnaire or instrument can be com-
pleted in just a few minutes. One such example is
the Patient/Parent Information and Involvement
Assessment Tool (PINT), which is an instrument
that Sobo (2004) designed to assess the family’s per-
spective on shared decision making. Other times,
more comprehensive family assessment instruments
are necessary, such as the Family Systems Stressor-
Strength Inventory (FS3I) (Berkey-Mischke &
Hanson, 1991; Hanson, 2001; Kaakinen, Hanson,
& Denham, 2010). The FS3I is an instrument
designed by nurses to provide quantitative and qual-
itative data pertinent to family stressors, family
strengths, and intervention strategies (see Appendix
A). To select the most appropriate assessment in-
strument, be sure the instrument has the following
characteristics:
■ Written in uncomplicated language at a fifth-
grade level
■ Only 10 to 15 minutes in length
■ Relatively easy to score
Family Nursing Assessment and Intervention 115
Family composition
Gender
Sexual orientation
Rank order
Subsystems
Boundaries
Extended family
Larger systems
Ethnicity
Race
Social class
Religion and/or spirituality
Environment
Activities of daily living
Emotional communication
Verbal communication
Nonverbal communication
Circular communication
Problem-solving
Roles
Influence and power
Beliefs
Alliances/coalitions
Structural
Developmental
Stages
Tasks
Attachments
Instrumental
Expressive
Functional
Family
assessment
Internal
External
Context
FIGURE 4-3 Calgary assessment model diagram. (From Wright L. M., & Leahey, M. [2009]. Nurses and
families: A guide to family assessment and intervention [5th ed.]. Philadelphia, PA: F. A. Davis, with permission.)
3921_Ch04_105-136 05/06/14 10:58 AM Page 115
■ Offers valid data on which to base decisions
■ Sensitive to sex, race, social class, and ethnic
background
Regardless of which assessment/measurement in-
strument is used, families should always be informed
of how the information gathered through the instru-
ments will be used by the health care providers.
Two other family data-gathering instruments
that should be used in working with families are the
family genogram and the family ecomap. Both are
short, easy instruments and processes that supply
essential family data and engage the family in ther-
apeutic conversation.
Family Genogram and Family Ecomap
Genograms and ecomaps provide care providers
with visual diagrams of the current family story and
situation (Harrison & Neufeld, 2009; Kaakinen,
2010). The information gathered from both the
genogram and ecomap help guide the family plan
of action and the selection of intervention strate-
gies (Ray & Street, 2005). One of the major bene-
fits of working with families with these two
instruments is that family members can feel and vi-
sualize the amount of energy they are expending to
manage the situation, which in itself is therapeutic
for the family (Harrison & Neufeld, 2009; Holts-
lander, 2005; Rempel, Neufeld, & Kushner, 2007).
The use of genograms and ecomaps among nurses
and other disciplines is growing and these useful tools
are being applied in a number of practice and re-
search contexts. Genograms, used historically in the
context of genetic prediction and counseling, have
been applied alongside ecomaps as primary assess-
ment and decision-making tools in acute centers
(Leahey & Svavarsdottir, 2009; Svavarsdottir, 2008).
Examples of how other providers have applied the
use of these tools include enhancing health promo-
tion (Cascado-Kehoe & Kehoe, 2008); increasing
provider cultural competence and spiritual assess-
ment of families (Hodge & Limb, 2010); and assess-
ment of child social support systems (Baumgartner,
Burnett, DiCarlo, & Buchanan, 2012). It is clear that
generating and annotating visual data in these dia-
grammatic forms will be increasingly useful to nurses
caring for families in many settings and contexts.
Family Genogram
The family genogram is a format for drawing a fam-
ily tree that records information about family
members and their relationships over at least three
generations (McGoldrick, Gerson, & Petry, 2008).
This diagram offers a rich source of information
for planning intervention strategies because it dis-
plays the family visually and graphically in a way
that provides a quick overview of family complexi-
ties. Family genograms help both nurses and fam-
ilies to see and think systematically about families
and the impact of the health event on family struc-
ture, function, and processes.
The three-generational family genogram had its
origin in Family Systems Theory (Bowen, 1985;
Bowen & Kerr, 1988). According to family systems,
people are organized into family systems by gener-
ation, age, sex, or other similar features. How a
person fits into his or her family structure influ-
ences its functioning, relational patterns, and what
type of family he or she will carry forward into the
next generation. Bowen incorporated Toman’s
(1976) ideas about the importance of sex and birth
order in shaping sibling relationships and charac-
teristics. Furthermore, families repeat themselves
over generations in a phenomenon called the trans-
mission of family patterns (Bowen, 1985). What hap-
pens in one generation repeats itself in the next
generation; thus, many of the same strengths and
problems get played out from generation to gen-
eration. These include psychosocial and physical
and mental health issues.
Nurses establish therapeutic relationships with
families through the process of asking questions
while collecting family data. Families become more
engaged in their current situation during this inter-
action as their family story unfolds. Both the nurse
and the family can see the “big picture” historically
on the vertical axis of the genogram and horizontally
across the family (McGoldrick et al., 2008). This ap-
proach can help families see connectedness, and help
identify potential and missing support people.
The diagramming of family genograms must ad-
here to specific rules and symbols to ensure that all
parties involved have the same understanding and
interpretations. It is important not to confuse family
genograms with a family genetic pedigree. A family
pedigree is specific to genetic assessments (see
Chapter 7), whereas a genogram has broader uses
for family health care practitioners. Olsen, Dudley-
Brown, and McMullen (2004) have suggested, how-
ever, that given the advancement of genomics in
driving health care, nursing should consider blend-
ing pedigrees with genograms and ecomaps as a way
to offer a more comprehensive holistic nursing care
perspective. Creative blended models built upon
116 Foundations in Family Health Care Nursing
3921_Ch04_105-136 05/06/14 10:58 AM Page 116
these ideas are emerging in practice with innovative
applications such as the use of color coding for en-
hancing multimodal understanding of children and
families (Driessnack, 2009).
Figure 4-4 provides a basic genogram from
which a nurse can start diagramming family mem-
bers over the first, second, and third generations
(McGoldrick, Gerson, & Schellenberger, 1999).
Figure 4-5 depicts the genogram symbols used to
describe basic family membership and structure,
family interaction patterns, and other family infor-
mation of particular importance, such as health sta-
tus, substance abuse, obesity, smoking, and mental
health comorbidities (McGoldrick et al., 2008). The
health history of all family members (e.g., morbid-
ity, mortality, and onset of illness) is important in-
formation for family nurses and can be the focus of
analysis of the family genogram. An example of a
family genogram developed from one interview is
contained in the Bono family case study below.
The structure of the interview for gathering the
genogram information is based on the reasons why
the nurse is working with the family. For example,
if the context of creating a genogram is that of ob-
taining a health history aimed at uncovering family
patterns of illness, the nurse may wish to explore
more fully the health history of each generational
family member. If, on the other hand, the context
of the nursing care is determining the nature of so-
cial relationships and roles among family members
to craft an acute care plan of discharge, the nurse
may wish to focus the interview more closely on
determining who is directly in the home and how
their relationships function to aid in the recovery
of the ill family member. A suggested format for
conducting a concise, focused family genogram in-
terview is outlined in Box 4-4. Most families are co-
operative and interested in completing their
genogram, which becomes a part of their ongoing
health care record. The genogram does not have
to be completed at one sitting. As the same or a dif-
ferent nurse continues to work with a family, data
can be added to the genogram over time in a con-
tinuing process. Families should be given a copy of
their own genogram.
Family Ecomap
A family ecomap provides information about systems
outside of the immediate nuclear family that are
sources of social support or that are stressors to the
family (Olsen et al., 2004). The ecomap is a visual
representation of the family unit in relation to the
larger community in which it is embedded (Kaaki-
nen, 2010). It is a visual representation of the rela-
tionship between an individual family and the
world around it (McGoldrick et al., 2008). The
ecomap is thus an overview of the family in its cur-
rent context, picturing the important connections
among the nuclear family, the extended family, and
the community around it.
The blank ecomap form consists of a large circle
with smaller circles around it (Fig. 4-6). A simpli-
fied version of the family is placed in the center of
the larger circle to complete the ecomap. This cir-
cle marks the boundary between the family and its
extended external environment. The smaller outer
circles represent significant people, agencies, or
Family Nursing Assessment and Intervention 117
FIGURE 4-4 Basic genogram format.
3921_Ch04_105-136 05/06/14 10:58 AM Page 117
Sexual abuse
Female
Heterosexual
Gay Lesbian
Male Therapy or
Institutional
Connection
Household shown by circling members living together
(couple living with their dog after launching children)
Age
above
symbol
m 1970 LT 95
*When multiple deceased generators are included, use an X only for untimely death.
inside
symbol
Adopted at 5
use an
arrow to
show family
into which child moved
Birth Date
Marriage Secret Affair
Man to
woman
Woman
to man
82
23
60
62 63
27
Ed Judy
DogSam
Jolie
Transgender People
Pet
Sexual Relationship
Living Together
LT 95
Committed
Relationship
m 70, s 95
Marital Separation
Marital Reconciliation
After Separation
Adopted Child/Foster Child
Bisexual
94 A 99
10
lesbian couple’s
daughter
conceived
with egg of one
partner and
sperm donor
gay couple’s
daughter
conceived
with sperm of one
partner and
egg donor,
carried by
surrogate mother
Donor
Insemination
95
A 97LW 98–99
10
41
Immigration
94
1113
92
Location &
Annual
Income
X and age
at death in
symbol, death
date above*
above
birth date
identified patient (IP)
symbol has double line
and is written lower
than siblings
spouses
written
smaller &
lower
Death
72
Boston
$100,000
1941–2001
Has Lived in
2+ Cultures
Family
Secret
24
m 70, s 95, d 97
Divorce
s 95–96
Reconciliation After Divorce
d 98, remar 00
Divorce and Remarriage
d 98, remar 00m 95
Biological
child
Focused on HostileClose Fused
Close-hostile
Focused on
negatively
Distant Cutoff
Cutoff
repaired
Caretaker
Spiritual
connection
or affinity
Positive
relationship
Physical abuse Emotional abuse
Physical or
psychological illness
Physical or psychological
illness in remission
In recovery from
substance abuse
In recovery from mental
or physical problems and
from substance abuse
Language difficulty (person
does not speak dominant
language of the country)
Substance abuse
Suspected
substance abuse
Physical or
psychological illness
Smoker
S
Obesity
O
97
99 03 04 05
Stillbirth
Information
unknown
Miscarriage
01
AbortionFoster
child
Adopted
child
Twins Identical
twins
Pregnancy
m 80, s 85–86 d 90, remar 93, rediv 94
Children
Interactional Patterns Between People Addiction, Physical or Mental Illness or Other Problem
list in birth order beginning with the oldest on left
FIGURE 4-5 Genogram symbols. (From Genograms: Assessment and Intervention, Second Edition by Monica McGoldrick,
Randy Gerson, and Sylria Shellenberger. Copyright © 1999 by Monica McGoldrick and Sylvia Shellenberger. Copyright © 1985 by
Monica McGoldrick and Randy Gerson. Used by permission of W. W. Norton & Company, Inc.)
3921_Ch04_105-136 05/06/14 10:58 AM Page 118
institutions with which the family interacts. Lines
are drawn between the circles and the family mem-
bers to depict the nature and quality of the rela-
tionships, and to show what kinds of energy and
resources are moving in and out of the immediate
family. Straight lines show strong or close relation-
ships; the more pronounced the line or greater the
number of lines, the stronger the relationship is.
Straight lines with slashes denote stressful relation-
ships, and broken lines show tenuous or distant re-
lationships. Arrows reveal the direction of the flow
of energy and resources between individuals, and
between the family and the environment. Ecomaps
not only portray the present situation but also can
be used to set goals, for example, to increase con-
nections and exchanges with individuals and agen-
cies in the community. See the Bono family case
study later in this chapter for an example of a com-
pleted ecomap.
The value of using a genogram and ecomap in
family nursing practice is expansive. By creating
a visual picture of the system in which the family
Family Nursing Assessment and Intervention 119
FIGURE 4-6 Blank ecomap.
BOX 4-4
Family Genogram Interview Data Collection
1. Identify who is in the immediate family.
2. Identify the person who has the health problem.
3. Identify all the people who live with the immediate
family.
4. Determine how all the people are related.
5. Gather the following information on each family
member.
■ Age
■ Sex
■ Correct spelling of name
■ Health problems
■ Occupation
■ Dates of relationships: marriage, separation, divorce,
living together, living together/committed
■ Dates and age of death
6. Seek the same information for all family members
across each generation for consistency and to reveal
patterns of health and illness.
7. Add any information relative to the situation, such as
geographical location and interaction patterns.
Place basic genogram of
the immediate family in the
center of the ecomap circle
Child’s
school
Subsystem
Family
interacts
Extended
family or
family
Church
Work
Strong relationship
Weak relationship
Tense relationship
Direction of
energy flow
3921_Ch04_105-136 05/06/14 10:58 AM Page 119
exists, families are more able to envision alternative
solutions and possible social support networks (Ray
& Street, 2005; Yanicki, 2005). In addition, the
process of this data collection itself helps to expose
a clearer picture of the supportive or unsupportive
family relationships that are going on in a family
system (Neufeld, Harrison, Hughes, & Stewart,
2007). This information will enhance understand-
ing of the family’s social network with their care-
givers (Ray & Street, 2005).
Family Health Literacy
Health literacy is the ability to use health infor-
mation to make informed decisions through the
comprehension of reading material, documents,
and numbers. Functional health literacy incorpo-
rates all of these elements, but it also implies that
the client (family) has the ability to act on health
care decisions. Concepts of health literacy include
the comprehension of medical words, the ability
to follow medical instructions, and the under-
standing of the consequences when instructions
are not followed (Speros, 2005). Nurses who
understand the concept of health literacy will ac-
tively seek to collect ongoing assessment data
about the learning needs of family members in
their meetings, interviews, or conferences. This
data about the family members’ abilities and pref-
erences for learning will help guide the nurse to
provide education, materials, and other supports,
such as videos or Web sites, that are accessible to
the family.
Through interactions with the family and when
completing the genogram and ecomap, nurses have
the opportunity to determine whether there is an
issue of health literacy for any member of the fam-
ily. Health literacy is an important measure for
health care practitioners because lower health lit-
eracy is strongly associated with poor health out-
comes (Berkman, Sheridan, Donahue, Halpern, &
Crotty, 2011; Sentell & Halpin, 2006; Speros,
2005). Health literacy plays a primary role in peo-
ple’s ability to gain knowledge, make decisions, and
take actions that result in positive health outcomes
(Berkman et al., 2011; DeWalt, Boone, & Pignone,
2007; Speros, 2005), especially when managing a
chronic illness (Gazmararian, Williams, Peel, &
Baker, 2003). Assessment is particularly important
when low literacy or low language proficiency ex-
ists, because such individuals are more likely to at-
tempt to hide their inability to read or understand
because of shame or embarrassment (Bass, 2005;
Dreger & Tremback, 2002; Osborn et al., 2007).
When nurses design written material for the
family, the following common elements make it
easier to understand from a health literacy per-
spective (Bass, 2005; Peters, Dieckmann, Dixon,
Hibbard, & Mertz, 2007):
■ All written information should be in at least
14-point font using high-contrast Arial or
sans serif print with plenty of blank space on
glossy paper.
■ Uppercase and lowercase letters should be
used.
■ Information is most easily seen when using
black ink on white paper. Use short sen-
tences with bullets or lists no longer than
seven items (Peters et al., 2007).
Written information presented at the third-
grade reading level will reach the largest audience,
but it may be necessary to write at the fifth-grade
level to retain the meaning of the content (Mayer
& Rushton, 2002; Peters et al., 2007). Using mul-
tiple forms of communication, including visual
aids, will help families retain the information (Bass,
2005; Dreger & Tremback, 2002; Osborn et al.,
2007).
Nurses need to approach assessment of the fam-
ily health literacy with sensitivity and understand-
ing. It is a crucial element to take into consideration
during the analysis of the family story and in the de-
velopment of the family action plan.
ANALYSIS OF THE FAMILY STORY
One of the challenges of data collection is organ-
izing the individual pieces of information so that
the “big picture” or whole family story can be un-
derstood and analyzed. To understand the family
picture, the nurse must consolidate the data that
were collected into meaningful patterns or cate-
gories so as to visualize the relationships between
and among the patterns of how the family is man-
aging the situation. Diagramming the family and
the relationships between the data groups assists
identifying the most pressing issues or problems for
the family. If the family and nurse focus on solving
these major family problems, the outcome will have
a ripple effect by positively influencing the other
areas of family functioning.
120 Foundations in Family Health Care Nursing
3921_Ch04_105-136 05/06/14 10:58 AM Page 120
The Family Reasoning Web (Fig. 4-7) is an
organizational tool to help analyze the family
story, by clustering individual pieces of data into
meaningful family categories. The components of
the Family Reasoning Web have been pulled from
various theoretical concepts, such as Family
Structure and Function Theory, Family Develop-
mental Theory, Family Stress Theory, and family
health promotion models. This systematic ap-
proach to collecting and analyzing information
helps structure the information collection process
to ensure inclusion of important pieces of infor-
mation. The categories of the Family Reasoning
Web are as follows:
1. Family routines of daily living (i.e., sleep-
ing, meals, child care, exercise)
2. Family communication
3. Family supports and resources
4. Family roles
5. Family beliefs
6. Family developmental stage
7. Family health knowledge
8. Family environment
9. Family stress management
10. Family culture
11. Family spirituality
Once the data have been placed into the cate-
gories of the Family Reasoning Web template, the
nurse assigns a family nursing diagnosis to each cat-
egory. “A nursing diagnosis is defined as a clinical
judgment about individuals, families, or community
responses to actual or potential health problems/life
processes. Nursing diagnoses link information to
care planning. Nursing diagnoses provide the basis
for selecting nursing interventions to help achieve
outcomes for which nurses are accountable”
(Doenges et al., 2013, p. 11). The case study below
presents more information on nursing diagnoses.
The North American Nurses Diagnosis Associ-
ation (NANDA) (2007) is the most global nursing
classification system. NANDA nursing diagnoses
that are specific to families are listed in Box 4-5. If
the pattern of family data in the specific category
in the Family Reasoning Web does not match one
of the NANDA nursing diagnoses, nurses are en-
couraged to create a family nursing diagnosis that
captures the family problem. Nursing diagnosis
manuals are extremely important resources for
nurses because family nursing diagnoses are read-
ily linked with both the Nursing Intervention
Classification (NIC) (Bulechek, Butcher, Dochter-
man, & Wagner, 2013) and Nursing Outcomes
Classification (NOC) (Moorhead, Johnson, Maas,
Family Nursing Assessment and Intervention 121
FIGURE 4-7 Family Reasoning
Web template.
Family
environment
Family health
knowledge
Family
developmental
stage
Family diagnosis
Family
communication
Family social
supports and
resources Family
roles
Family
beliefs
Family
culture
Family stress
management
Family routines
of daily living,
(e.g., meals, sleep,
exercise, child)
Family
spirituality,
religion
3921_Ch04_105-136 05/06/14 10:58 AM Page 121
& Swanson, 2012) data sets. These resources pro-
vide many new ideas for family interventions and
suggest focused family outcomes that can be ex-
plored with families.
Other diagnostic classification systems that can
be used to identify problems include the Omaha
System–Community Health Classification System
(Martin, 2004), the Diagnostic and Statistical Manual
of Mental Disorders, Fifth Edition (DSM-5; American
Psychiatric Association, 2013), and the International
Classification of Diseases: Clinical Modifications, Ninth
Edition (ICD-9-CM; American Medical Associa-
tion, 2012). See Tables 4-3 and 4-4, respectively,
for examples of selected family diagnoses from the
DSM and ICD-9-CM sources.
A rapidly growing system of diagnostic language
relevant to nursing in North America is that of the
World Health Organization ICD companions,
the International Classification of Functioning
(ICF) and its related child and youth version
(ICF-CY) (World Health Organization, 2013).
This broad schema of classification focuses on
making diagnostic statements of health impact in
four domains: body structure, body function, activ-
ity and participation, and environment (World
Health Organization, 2013). Family nursing practice
greatly involves the focus on the domains of activity
and participation and the environmental context of
family life. Given that nurses’ primary focus with
individuals and families is the functional aspect of
health in daily life, this system of categorizing and
coding functional outcomes of health is com-
pelling. The ICF and ICF-CY approaches are
being used with expanded focus in Europe and
Canada particularly (Florin, Björvell, Ehnfors, &
Ehrenberg, 2012; Raggi, Leonardi, Cabello, &
Bickenbach, 2010).
After the categories have been assigned and a
family nursing diagnosis determined, the next step
in analyzing the family story is for the nurse and
family to work together to determine the relation-
ships between the categories. Arrows are drawn
122 Foundations in Family Health Care Nursing
BOX 4-5
NANDA Nursing Diagnoses Relevant to
Family Nursing
■ Risk for impaired parent/infant/child attachment
■ Caregiver role strain
■ Risk for caregiver role strain
■ Parental role conflict
■ Compromised family coping
■ Disabled family coping
■ Readiness for enhanced family coping
■ Dysfunctional family processes: alcoholism
■ Readiness for enhanced family processes
■ Interrupted family processes
■ Readiness for enhanced parenting
■ Impaired parenting
■ Risk for impaired parenting
■ Relocation stress syndrome
■ Ineffective role performance
■ Ineffective family therapeutic regimen management
Source: Doenges, M. E., Moorhouse, M. F., & Murr, A. C. (2013).
Nursing diagnosis manual: Planning, individualizing, and doc-
umenting client care (3rd ed.). Philadelphia, PA: F. A. Davis,
with permission.
Table 4-3 Selected Family-Centered Diagnoses
From Diagnostic and Statistical Manual
of Mental Disorders, Fifth Edition
V61.9 Relational problem related to a mental disorder
or general medical condition
V61.20 Parent-child relational problem
V61.10 Partner relational problem
V61.8 Sibling relational problem
V71.02 Child or adolescent antisocial behavior
V62.82 Bereavement
V62.3 Academic problem
V62.4 Acculturation problem
V62.89 Phase-of-life problem
Source: American Psychiatric Association. (2013). Diagnostic
and statistical manual of mental disorders (DSM-5)
(5th ed.). Washington, DC: Author.
Table 4-4 Selected Family-Centered Diagnoses
From ICD-9-CM
313.3 Relationship problems
313.8 Emotional disturbances of childhood or
adolescence
V61.0 Family disruption
V25.09 Family planning advice
V61.9 Family problem
94.41 Group therapy
94.42 Family therapy
Source: American Medical Association. (2013). International
classification of diseases: Clinical modifications (IDC-9-CM).
Dover, DE: Author.
3921_Ch04_105-136 05/06/14 10:58 AM Page 122
between the family categories showing the direc-
tion of influence if the data in one category influ-
ence the data in another category. The important
family problems or issues surface by systematically
working through all of the relationships because
they are the ones that have the most arrows indi-
cating the strongest relationships to all other areas
of family functioning. The step reveals the primary
family problems.
Another dimension of the family story that is of
importance to nurses is the dimension of beliefs.
Family and family member beliefs about health, ill-
ness, health care providers, and even their own
roles and processes are of great importance for
nurses to assess in planning to provide optimal care.
The Beliefs and Illness Model by Wright and Bell
(2009) suggests that nurses should assess families’
beliefs in a number of areas, specifically, family
structure, roles, communication, and decision-
making authority; beliefs about health and illness
(how they are defined, why they occur, how they
are managed); and beliefs about health care
providers (their intentions, motivations, and
knowledge and the meaning of their presence and
actions to the families and their health or illness ex-
perience). Individuals and families often behave
based upon their beliefs and thus any attempt for
nurses to engage families in health promotion,
health literacy, or health intervention in any setting
requires an exploration of these key areas. After
verifying all of these findings with the family, the
next step is to work with the family to understand
their preferences for decision making and design a
family plan of care accordingly.
Shared Decision Making
Family nurses should explore how involved the
family would like to be in the decision-making
processes. Universal needs of families include con-
sistency, clarity, comprehensive information, and
involvement in shared decision making with the
health care provider (Salmond, 2008; Schattner,
Bronstein, & Jellin, 2006; Whitmer, Hughes,
Hurst, & Young, 2005). Nurses, consciously and
otherwise, affect the family stress level by control-
ling how much (and how quickly) they involve the
family in the care of their family members (Corlett
& Twycross, 2006). Nurses control how much in-
formation they share with families, how much they
involve the family in the daily routine, visiting
hours, and even discussions with/among family
members. Families have expressed fears of alienat-
ing health care providers (Taylor, 2006), thus com-
promising their loved ones’ care. All of this may
interfere with nurses being able to be effective fam-
ily advocates (Leske, 2002).
Health care providers underestimate the extent
that families want to be involved in the care of and
decision making about loved ones (Bruera, Sweeny,
Calder, Palmer, & Benisch-Tolly, 2001; Pierce &
Hicks, 2001). Although most families prefer a shared
decision-making approach (de Haes, 2006; Schat-
tner et al., 2006; Whitmer et al., 2005), families vary
relative to the amount of information they want and
their role in the decision-making process (Sobo,
2004). The amount of information families seek or
need changes over the course of the health event, the
stage of the illness, and the likelihood of a cure
(Butow, Maclean, Dunn, Tattersall, & Boyer, 1997).
An option grid is one strategy for implementation
of shared decision making (Elwyn et al., 2012). An
option grid is developed by the family nurse keeping
health literacy principles at the fifth-grade level.
Elwyn et al. specifically developed the grid format as
a decision-making paper worksheet addressing com-
mon therapeutic approaches to specific health con-
ditions where patients and families could view the
benefits or drawbacks associated with different pos-
sible treatment decisions. On the worksheet, the
most relevant, frequently asked questions about a
specific condition make up the rows of the grid, and
the specific options available for the decision make
up the columns. Patients are given the paper grid and
talked through the options available to them with
their provider. For example, see Box 4-6, an option
grid that a nurse could design to help parents deter-
mine respite placement for their 12-year-old daugh-
ter who is medically fragile with severe cerebral palsy.
This specific tool shows promise for nurses working
with families because not only does it represent the
principles of family-centered care in practice, but also
because families often have difficulties understanding
their options and the potential benefits or conse-
quences associated with their choices.
Another approach to shared decision making is
to use the Patient/Parent Involvement Informa-
tion Assessment Tool (PINT) developed by Sobo
(2004). The PINT is a self-administered survey
that can be kept in the medical record to facilitate
and target information for communication be-
tween the health care team and the family. In the
Family Nursing Assessment and Intervention 123
3921_Ch04_105-136 05/06/14 10:58 AM Page 123
challenge to collaborate in the care and meet the
needs of individuals and family members, nurses
may ask the following two sample questions from
the PINT tool (Sobo, 2004, p. 258):
1. When possible, what level of information
would you prefer to receive?
■ The simplest information possible
■ More than the simplest, but want to keep
it on everyday terms
■ In-depth information that you can help me
understand
■ As much in-depth and detailed informa-
tion as can be provided
2. When possible, what decision-making role
do you want to assume?
■ Leave all decisions to the health care team
■ Have the care team make the decisions
about care with serious consideration of
our views
■ Share in the making of the decisions with
the health care team
■ Make all the decisions about care with se-
rious consideration of the health care team
advice
Supporting the hypothesis that not all families and
family members want full involvement in making
health care decisions, Makoul and Clayman (2006)
have outlined the following nine options for shared
decision making (p. 307):
■ Doctor alone
■ Doctor led and patient acknowledgment
sought or offered
■ Doctor led and patient agreement sought or
offered
■ Doctor led and patient views/option sought
or offered
■ Shared equally
■ Patient led and doctor views/opinions sought
or offered
■ Patient led and doctor agreement sought or
offered
■ Patient led and doctor acknowledgment
sought or offered
■ Patient alone
One of the problems with the implementation
of shared decision making is that every health
care provider has a different definition and un-
derstanding of the components of this concept,
as well as personal biases and beliefs about how
individuals and families may or may not wish
to participate (Elwyn et al., 2012; Makoul &
Clayman, 2006). Shared decision making is not
124 Foundations in Family Health Care Nursing
BOX 4-6
Example of Option Grid
The following is an example of an option grid for helping a family to decide about 1-week respite placement for their
12-year-old medically fragile child:
Option 1: Home
Child knows own home and is around
familiar surroundings.
Home is adapted to the child’s needs
and wheelchair.
Caregiver would be the skills trainer
who knows the child.
Parents are comfortable with the child
being with the skills worker during the
day, but do not have experience with
this person at night.
Cost: $250 a day for 7 days for a total
of $1,750. This would come out of the
parents’ pocket because insurance does
not cover this care.
Option 2: Grandmother’s home
Child has been to grandmother’s home
only a couple of times because it is in
a different city.
Home is not adapted to the physical
care needs of child, such as wheelchair
and bathing.
Caregiver is grandmother, who the
child knows well and has spent consid-
erable time with.
Parents are comfortable with the child
being with grandmother. Grandmother
has helped take care of child for short
times before, such as a weekend.
Cost: nothing.
Option 3: Nursing home
New setting for child.
Setting can accommodate the child’s
special needs and wheelchair.
No personal relationship with care-
givers in this setting. Grandmother
could visit during day.
Parents do not have a relationship with
the caregivers in this setting.
Cost: Covered by insurance.
3921_Ch04_105-136 05/06/14 10:58 AM Page 124
just informing the family of the decisions and
keeping the lines of communication open, nor is
it the health care providers determining what de-
cisions the family can make. Shared decision
making requires that health care providers tailor
their communication, accommodate their talk to
the level of the family, and present information
in a way that allows the family to make informed
choices. Shared decision making includes the fol-
lowing steps as outlined by Makoul and Clayman
(2006, pp. 305–306):
■ The family and health care provider must de-
fine and agree on the health problem that is
confronting the family member.
■ The health care provider presents and dis-
cusses options of care in a way that invites
family questions.
■ The family and health care provider discuss
pros and cons of options, including cost ben-
efits, convenience, and financial costs.
■ The family and health care provider discuss
values and preferences, including ideas, con-
cerns, and outcome expectations.
■ The family and health care provider discuss
ability and confidence to follow through with
steps or regimen for each option.
■ Both the health care provider and family
should check and clarify for understanding
the discussion and information shared.
■ Both the health care provider and family
should reach a decision or defer decisions
until an agreed-on, specified time.
■ The health care provider should follow up to
track the outcome of the decision.
FAMILY NURSING INTERVENTION
The family plan of action (or care) is designed by
the nurse and the family to focus on the concerns
that were identified in the Family Reasoning Web
as the most pressing or causing the family the
most stress. The plan should account for the fam-
ily preferences for decision making and should
meet their health literacy needs. The more spe-
cific the family plan of action and the interven-
tions, the more positive the outcomes. The role
of the nurse is to offer guidance to the family, pro-
vide information, and assist in the planning inter-
ventions. Working with families from an outcome
perspective helps to clarify what information and
resources are necessary to address the family need.
The following four points will help the family
break the plan into action steps:
1. We need the following type of help.
2. We need the following information.
3. We need the following supplies or resources.
4. We need to involve or tell the following
people about our family action plan.
For the purposes of clarity and evaluation, this
plan should be a written document. The action
steps or interventions should be clear and concise.
The plan should outline specifically who needs to
do what by when and also articulate the timeframe
in which the nurse will follow up. The last step of
any family action plan should entail evaluation that
involves the nurse and family reflecting and sharing
ideas about what worked well, what needs to con-
tinue to be addressed by the family, and avenues for
seeking help in the future.
Working with families to improve health and
adapt to illness is the primary goal of family health
care nursing. Nevertheless, there has been little direct
evidence of the potential outcomes and effects asso-
ciated with family nursing intervention because
nurses are not often leading such research and/or tend
to focus more on descriptive rather than interven-
tional research (Chesla, 2010). What has been dis-
tilled from the bodies of literature on family health
care intervention, however, is that family intervention
does seem to produce better effects than usual, indi-
vidual-focused medical care; greater effects have been
shown in improving child health than adult health in
some chronic conditions; and family-focused inter-
vention examples found in childhood obesity efforts
reveal the most compelling effects (Chesla, 2010).
Chesla (2010) also articulated that the means of
interventions varied and ranged from simple home
visits to coach families to much more complex edu-
cational and skill-developing strategies. Nurses
were involved in relationship-based interventions to
improve family communication, problem solving,
and skill building as they related to illness or health
management. The more tools nurses tended to use
to assist families (multimodal) as part of their care
plans, the better the outcomes seemed to be, par-
ticularly in managing complex health conditions
that required numerous lifestyle changes. Family
members were sometimes noted to be beneficiaries
of interventions, experiencing unique and improved
outcomes that were separate from the health of the
patient (Chesla, 2010). The field requires additional
intervention strategies and resulting evidence of
Family Nursing Assessment and Intervention 125
3921_Ch04_105-136 05/06/14 10:58 AM Page 125
outcomes, though more frequent examples are be-
ginning to emerge in practice (Svavarsdottir &
Jonsdottir, 2011).
Nurses help families in the following ways:
(1) providing direct care, (2) removing barriers to
needed services, and (3) improving the capacity of
the family to act on its own behalf and assume re-
sponsibility. Family nursing interventions can be di-
rected toward improving the health outcomes of the
member with the illness or condition, the family
members’ health-related outcomes of caregiving, or
a combination of both. One of the important as-
pects of working with the family is the nurse-family
relationship, which is an intervention in and of itself
as families can experience a sense of strength, com-
fort, and confidence that can be therapeutic and
useful (Friedman, Bowden, & Jones, 2003).
The nurse is responsible for helping the family
implement the plan of care. The nurse can assume
the role of teacher, role model, coach, counselor,
advocate, coordinator, consultant, and evaluator in
helping the family to implement the plan of the
care they jointly created. The types of interventions
are limitless because they are designed with the
family to meet its needs in the context of its family
story. Three examples below illustrate different
family nursing interventions in various contexts.
Brief Therapeutic Conversations
in Acute Care
Brief family conversations or interviews can be con-
sidered a family intervention. These brief interviews
could include nurses making introductions to family
members, collecting focused data to complete simple
genograms and ecomaps, and opening pathways of
knowing about families’ self-defined needs and pri-
orities (Wright & Leahey, 2013). Svavarsdottir,
Tryggvadottir, and Sigurdardottir (2012) conducted
a study measuring families’ perceptions of nurse sup-
port and their own reports of family functioning.
The study compared families who received brief
family intervention interviews with nurses and those
who did not. Predictably, families who received the
nursing intervention interview reported feeling
more supported than those who did not. Surpris-
ingly, this finding was true for families with a child
with an acute health crisis but was not true for those
coping with chronic conditions. Expressive family
functioning did not seem to change in the latter sit-
uation. Families of acutely ill children may experi-
ence significant benefits, however, when nurses take
small amounts of time to enact simple family health
care strategies (Svavarsdottir et al., 2012).
Home Visits and Telephone Support
Nursing visits to family homes are part of the early
historical tradition of nursing and are appropriate to
use today in family nursing. Northouse et al. (2007)
utilized a clinical trial design to provide three in-
home support visits along with two follow-up tele-
phone calls to partnered couples where men were
living through prostate cancer treatment. In the
study, both patients and partners who received the
in-home visits and phone calls reported that their
communication and relationship with one another
improved. Nurses offered these families coaching in
communication, facilitated discussions that identified
the beliefs and needs of both partners, and helped the
families make decisions about care tasks and life bal-
ance. The partners seemed to benefit by demonstrat-
ing improved quality of life, increased self-efficacy,
and less overall caregiving negativity than partners
who did not receive the intervention. Additionally,
some spouses continued to report these effects for up
to 8 months following the intervention, suggesting
that the act of providing access to nurses in the home
and via telephone helped spouses long after the con-
tact ended (Northouse et al., 2007).
Self-Care Talk for Family Caregivers
Nurses caring for families can intervene to pro-
mote health by helping families to identify poten-
tial health risks that stress the health of the family,
126 Foundations in Family Health Care Nursing
3921_Ch04_105-136 05/06/14 10:58 AM Page 126
such as when a 45-year-old father and husband
with metabolic syndrome refused to comply with
diet and exercise interventions. Parker, Teel, Leen-
erts, and Macan (2011) proposed a unique family
nursing intervention for developing self-care mo-
tivation and implementation in family caregivers of
people with high-acuity health needs; it is widely
known that intensive periods of caregiving can re-
sult in worsening health of caregivers. In this inter-
vention, family nurses made a series of six extended
telephone calls that helped the family caregivers
identify the barriers they faced in taking care
of themselves and then used a theory-based frame-
work to remove those barriers and implement
self-care strategies to improve their own health.
Clinical trial research is needed to demonstrate the
efficacy and effectiveness of this intervention, but
early evidence from similar approaches indicates
that the ideas have promise for improving caregiver
health. Moreover, the relational nature of the in-
tervention, supplied entirely by telephone, is cre-
ative and has implications for nurses serving
families in a variety of settings, including those in
rural locations.
FAMILY NURSING EVALUATION
In making clinical judgments, nurses engage in
critical thinking to determine whether and to what
extent they have met an outcome. The means of
measuring desired changes in outcomes varies with
the specific problem upon which the action plan is
focused. For example, if the family has identified
that a primary focus problem is disrupted sleep
routines for their young child with attention-
deficit/hyperactivity disorder, the nurse may pro-
pose that the family create a simple chart to
measure their new routine of sleep hygiene prac-
tices on a daily basis. The family determines that
at present, the child is not able to fall asleep with
ease on any given night and they set a goal to have
the child falling asleep with ease 3 nights a week
initially. Using the simple daily charting concept,
the nurse and family can easily look to the col-
lected data at a specified time to determine if the
goal has been met. The team makes the decision
about whether to proceed as originally planned, to
modify the family action plan, or to revisit the fam-
ily story in total. As indicated previously, the crit-
ical reasoning approach of thinking about families
and their needs is not linear. In practice, a constant
flow occurs between the components of the family
assessment and intervention strategy with plans
being continually evaluated and modified through
reflection.
There can be many reasons underlying a lack of
success in meeting desired outcomes when working
with families, some of which may be related to fam-
ily factors, others to nurse factors, and even others
to additional environmental factors. Apathy and
indecision are examples of potential family barriers.
Family apathy may occur because of value differ-
ences between the nurse and the family. The family
may be overcome with a sense of hopelessness, may
view the problems or bureaucracy as too over-
whelming, or may have a fear of failure. Nurses also
should consider whether they themselves imposed
barriers. Examples of nurse barriers to achieving
desired family outcomes could include discrepant
values or beliefs from the family, resulting in a lack
of follow-through on the part of the nurse; not lis-
tening to family concerns about the problems of
importance, leading to two separate, rather than
one unified, outcome goal; or even lack of time and
resources needed for the nurse to address the fam-
ily needs in a timely fashion. Examples of additional
environmental factors that act as barriers to desired
outcomes can be things such as a change in the pre-
scription formulary that limits access to the effec-
tive drug of choice on a family’s insurance plan,
lack of access to an appropriate specialty care
provider because of rural geography, or the loss of
a job by the primary wage earner in the family. A
more detailed list of possible barriers to family out-
comes can be found in Box 4-7.
Family Nursing Assessment and Intervention 127
BOX 4-7
Barriers to Family Outcomes
■ Family apathy
■ Family indecision about the outcome or actions
■ Nurse-imposed ideas
■ Negative labeling
■ Overlooking family strengths
■ Neglecting cultural or gender implications
■ Family perception of hopelessness
■ Fear of failure
■ Limited access to resources and support
■ Limited finances
■ Fear and distrust of health care system
3921_Ch04_105-136 05/06/14 10:58 AM Page 127
Aside from evaluating outcomes, another im-
portant part of the family evaluation is the decision
when to end the relationship with the family.
Sometimes care with a family ends suddenly. In
this case, it is important for nurses to determine
the forces that brought about the closure. The
family may seek to end the relationship prema-
turely, which may require a renegotiating process.
The insurance or agency requirements may place
a financial constraint on the amount of time nurses
can work with a family. Other times, the family-
nurse relationship comes to an end more naturally,
as when the nurse and family together determine
that the family has achieved the intended out-
comes. Whatever the reason for the end of the
nurse-family relationship, it is crucial that closure
be achieved between the parties.
Building closure into the family action plan will
benefit the family by providing for a smooth transi-
tion process. Strategies often used in this transition
include decreasing contact with the nurse, extending
invitations to the family for follow-up, and making
referrals when appropriate. If possible, this process
should include a summary evaluation meeting where
the nurse and family put formal closure to their
relationship. Following up with a therapeutic letter
can encourage families to continue positive adapta-
tion. The therapeutic letter should include recogni-
tion of the family achievement, a summary of the
actions, commendations to each family member, and
an insightful question for the family to think about
in the future that may provide the family a future
direction (Wright & Bell, 2009). An example of a
therapeutic family letter is found in Box 4-8.
128 Foundations in Family Health Care Nursing
BOX 4-8
Example of Therapeutic Family Letter
Dear W, H, and T,
First, I want to thank all of you for allowing me the op-
portunity to get acquainted with your family. I appreciated
your openness and willingness to talk with me.
During our time together, we discussed several issues
that were important to your family. One of these issues
was the ongoing possibility of H losing his job because of
the seasonal nature of his work. We explored the effects
of potential job loss on a personal and family level.
H, you expressed some concern about your ability to
provide adequately for your family. You indicated a per-
sonal constraining belief that a lack of steady employment
meant that you were letting your family down and not
providing for them. We discussed the idea that a paying
job is only one part of the entire family support system
that you provide. We explored some examples of noneco-
nomic means of support, such as specific tasks related to
farm chores, household management, and child care. If
your job situation changes again, I hope you will find
some of these suggestions helpful.
W, I was so impressed with your ability to juggle your
caregiving job with home, farm, kids, and spouse. I can’t
think of many women who could handle all of that with
such strength and grace. With all that you do, it’s not sur-
prising that there isn’t much time left over for your own
personal endeavors. We discussed your constraining belief
that you had to be responsible for everything. You envi-
sioned the possibility of letting go of certain tasks and
suggesting ways to share other tasks more equitably
among family members. If you and your family choose to
implement some task-sharing ideas, I sincerely hope this
will work for all of you.
T, you have mapped out a path to higher education
and a future career. You have every reason to expect suc-
cess. We briefly touched upon what “success” might
mean for you and whether success depends on the uni-
versity attended. I hope you will consider my thoughts in
this regard. Whatever the outcome, you have the love and
support of your parents.
Finally, I would like to commend all of you for your
deep devotion to each other and for putting family first.
You value family time, and you strive to communicate in a
way that sustains your close relationship with each other.
I would like to invite W and H to consider a suggestion
regarding making time for just the two of you. “Couple
time” is easy to overlook when you are focused on creat-
ing a loving, stable home for E and helping to launch T
into higher education. Please remember that you two are
the solid foundation of your family; the stronger your rela-
tionship is, the stronger your whole family can be.
As a result of our time spent together, I came away
with the feeling that your family is exceptionally strong,
deeply committed to one another, and fully capable of
adapting to any of life’s challenges. Thank you again for
your time.
Best wishes to you and your family,
Nursing student signature here
3921_Ch04_105-136 05/06/14 10:58 AM Page 128
NURSE AND FAMILY REFLECTION
The final step in critically thinking about family
nursing is for nurses and families to engage in vital,
creative, and concurrent reflection about their work
together. There are two purposes of engaging in
individual and collaborative reflection: to facilitate
evaluation of progress toward the desired family
outcomes and to increase expertise of the nurse.
The first purpose is for the nurse to reflect on
the success of the family outcome in collaboration
with the family as part of outcome evaluation. Re-
flection entails thinking about your thought
process relative to this family client. Nurses can
link ideas and consequences together in logical se-
quences by using an “if (describe a situation) … then
(explain the outcome)” exercise, which can help the
family member articulate concerns. A comparative
analysis approach of the family problem can be
used to analyze the strengths and weaknesses of
competing alternatives. The nurse may decide to
reframe the family problem or priority need by at-
tributing a different meaning to the content or con-
text of the family situation based on testing,
judgment, or changes in the context or content of
the family story (Pesut & Herman, 1999). While
this process of reflecting with the family results in
new co-created evaluation and knowledge related
to the collaborative work, the nurse can also engage
in this comparative reflective reasoning individually
in preparation for and follow-up to the discussions
with the family.
The second purpose of reflection is for nurses
to build on their expertise by reflecting on client
stories and their practice with each family. In
essence, nurses create a library of family stories so
that each time they come upon a similar family
story, they can pull ideas from previous experi-
ences. This aspect of reflection assists nurses with
pattern recognition.
Yet another, more individual purpose of reflection
is to engage in self-reflection and self-evaluation. By
using this critical thinking strategy, nurses learn from
mistakes and cement patterns of action that assist
them to advance in their nursing practice from
novice to expert family nurse.
A family case study follows that demonstrates crit-
ical reasoning about a family, assessment to identify
concerns, and interventions to meet family needs.
Family Nursing Assessment and Intervention 129
new member. (See Chapter 3 for details about this theo-
retical model.) Based on this approach, Vicki has many
questions in her mind as she prepares for her appointment
with the Bono family. The questions Vicki has about each
family member and the whole family are presented in bul-
leted lists after a brief description of each family member.
Libby Bono is a 35-year-old mother recovering from a
cesarean section delivery 7 days ago. She does not have
any existing health problems. Libby’s roles in the family are
primary child-rearer, events planner, disciplinarian, and
health expert. Libby is a hairdresser and is independently
contracted with a hair salon. She has planned to take off
3 months for maternity leave.
• How might Libby’s recovery from the cesarean section
be affecting her roles in the family, especially with an
active 2-year-old and a newborn?
(continued)
Family Case Study: Bono Family
In preparation for her appointment with the Bono family in
the mother-baby clinic, Vicki reviews the chart notes written by
the nurse midwife about the family. Vicki sees that the Bono
family is coming in for a 1-week well-baby checkup of new-
born infant Hannah and a follow-up for Libby, the mother,
after her cesarean section (C-section) delivery 7 days ago.
The note from the receptionist indicates that Libby expressed
some concerns with her effectiveness in breastfeeding Han-
nah. The appointment book notes that the whole Bono family
is coming for this visit. Vicki notes that the Bonos are a nuclear
family that consists of a married couple with two biological
children. Figure 4-8 shows the Bono family genogram.
Knowing that this is a nuclear family coming in for a
well-baby checkup, Vicki decides to use a Developmental
Family Life Cycle theoretical approach to this family with a
3921_Ch04_105-136 05/06/14 10:58 AM Page 129
• What are Libby’s thoughts or plans for returning to work
after her maternity leave?
• How is Libby adjusting to her expanded mother role?
Assess Libby for postpartum depression.
Matt Bono, 36 years old, works for Frito Lay Company
in sales and distribution. His primary roles in the family are
decision maker, maintenance person, pioneer, and infor-
mation provider. He reports feeling little attachment to his
occupation and welcomes this new birth as a change in
routine and an opportunity to consider a change in his
place of employment. His current medical problems in-
clude type 2 diabetes and mild hypertension; both are well
managed and controlled by oral diabetic and antihyperten-
sive medications. Currently, he is following the Weight
Watchers diet to reduce his weight and to control the
symptomatology experienced from his health conditions.
• How is Matt adjusting to the expanded role of father of
two daughters?
• What are Matt’s plans for employment, specifically about
financial support for the family if he leaves his job? How
would this affect health insurance for the family?
Sabrina Bono is a healthy 2-year-old girl who is devel-
opmentally appropriate. Psychologically, Sabrina is in the
autonomy versus shame-and-doubt developmental stage.
Her parents report that she often attempts to try new
things on her own, and they frequently praise her efforts to
promote independence. Her interest in potty training is de-
veloping, but still intermittent. Her immunizations are cur-
rent. She normally goes to a day-care center that is close to
her mother’s work.
• How is Sabrina adjusting to the new baby?
• Is Sabrina showing any regression in her skills and abilities?
• Are each of the parents finding time to spend with Sab-
rina alone?
• How are the parents talking with Sabrina about her role
as big sister?
Hannah Bono, 7 days old, was delivered after 42 weeks’
gestation and was proved to be adequate for gestational age
(AGA; 10th–90th percentile), 53.75 cm and 3,966 g, with
American Pediatric Gross Assessment Record (APGAR)
scores of 8 at 1 minute and 9 at 5 minutes.
• Is Hannah developing on target for her age and gesta-
tional age at birth?
• How often is Hannah eating, and is she gaining weight?
• How is Hannah nursing?
The Bono family is a nuclear family with the addition of
second child.
• What are the major concerns for the family at this time?
• Who in the family is having the most difficult adjustment
to the changes brought about by the addition of a new
family member?
130 Foundations in Family Health Care Nursing
3 yr
Matt
36 yr
M 2000
Libby
35 yr
Works in sales
Diabetes type 2
Hypertension
Family health
insurance
Healthy
Developmentally appropriate
Behavior regression with birth of Hannah
Day care all week
C-section 7 days ago
Hairdresser,
on leave 3 months
HealthyHannah
7 days
Sabrina
2 yr
Ava
30 yr
FIGURE 4-8 Bono family genogram.
3921_Ch04_105-136 05/06/14 10:58 AM Page 130
• How is the family adjusting to these changes?
• Who or what are the support systems for this new
family?
Bono Family Story:
During the appointment, Vicki confirms that family life for
the Bono family has changed. Hannah was found to be
healthy and developmentally appropriate. Libby is healing
well from the C-section, but reported occasional discomfort
when she “overdoes it.” Libby’s concerns about breastfeed-
ing were easily relieved as Vicki validated her breastfeeding
technique. An assessment for postpartum depression re-
vealed that Libby is not demonstrating any signs of depres-
sion at this time. Throughout the examination of Hannah,
the parents demonstrated overwhelming signs of bonding,
such as talking with the infant and bragging about her
beauty and temperament. During the appointment, Vicki
noted that Sabrina was throwing toys and attempting to
crawl onto her mother’s lap while Libby was nursing Han-
nah. Sabrina would say “baby back” when she was upset.
When Matt attempted to coddle or praise the baby, Sabrina
became extremely angry with her father. They were not ig-
noring Sabrina but were not focused on her during the ap-
pointment. The parents’ nonverbal actions showed
frustration with Sabrina’s behaviors. When asked, they re-
ported that Sabrina has been very temperamental and in-
consolable at day care. They reported that she had begun
to show progress with toilet training before Hannah’s birth
but had now lost all interest.
Analysis of Bono Family Story:
To help everyone see the larger family picture, Vicki uses
the Family Reasoning Web (see Fig. 4-7). Based on the re-
sponses from using the Family Reasoning Web, she uncov-
ered the following family information for analysis:
• Family routines of daily living: Matt and Libby are both
tired from Hannah’s every-3-hour breastfeeding sched-
ule. They share some of the responsibility for comforting
Hannah and seeing to her needs. Meals have been chal-
lenging as Matt has had to assume this responsibility be-
cause Libby has not recovered from her C-section. At this
time, they do not have extended family support. Sabrina
is still going to day care but is evidencing difficulty there.
• Family communication: Communication has been identi-
fied as a strength of the couple. They have a shared de-
cision-making style. They appear nurturing with their
children. Sabrina is emotionally up and down. She is
clingy with her dad and ignores her mother except when
she is breastfeeding Hannah. Sabrina was throwing toys
when upset or frustrated. She periodically pointed to
Hannah and said, “Take back.”
• Family supports and resources: This family is fully cov-
ered under Matt’s health insurance through his work.
They have some family they can call on to help them.
Ava, Libby’s sister, volunteered to come for a visit and
stay for 2 weeks. Matt’s brother, his wife, and their 3-
year-old child live in the same city. They have informally
talked about sharing some child care. Both parents need
to work to sustain their family lifestyle. Libby does not
have benefits in her contracted hairdresser job. When
she is off work, she does not make money. She does not
have paid maternity leave. The couple planned for Libby
to take 3 months off from work. The needs identified are
for some immediate family support with everyday living
and some financial concern at the end of the 3 months,
given that the family had not planned for a longer period
of reduced income than this.
• Family roles: All of the family members are experiencing
role ambiguity with their new roles. Matt and Libby are
now parents of two daughters. Sabrina is a big sister, and
Hannah is the new infant. Matt expressed some role
overload because he is assuming many of the typical
daily household chores of meals, laundry, food shopping,
and primary care provider for Sabrina.
• Family beliefs: They strongly state that “family comes
first.” This was a planned pregnancy. They see them-
selves as loving parents. They express some confusion
about disciplining Sabrina given her recent behaviors.
• Family developmental stage: This is a nuclear family in
the family-with-toddler stage. They also have a new in-
fant; therefore, they are in two developmental stages at
the same time.
• Family health knowledge: The family expressed that it
needed more help in knowing how to help Sabrina. The
parents do not know how to work with Sabrina to help
her adjust to being a big sister. They are confused with
Sabrina’s behavior of aggression, mood swings, clinging,
and pointing at the baby and saying “take back.” They
feel that she has lost some of her skills. Health literacy
does not appear to be an issue.
• Family environment: At this time, they have enough
room in their home for a family of four. They live in a safe
neighborhood, but they do not know their neighbors well.
• Family stress management: They express feeling stressed
about Sabrina’s behaviors. They are both tired. Sabrina is
stressed, as evidenced by her behaviors and changes in
behavior. They are dealing with the current situation on
their own but are open to asking for help from family for
the immediate assistance with daily living routines. They
are open to learning more about how to help Sabrina.
(continued)
Family Nursing Assessment and Intervention 131
3921_Ch04_105-136 05/06/14 10:58 AM Page 131
• Family culture: They are white with an Italian Catholic
background. They are of working lower-middle-class so-
cioeconomic status.
• Family spiritually: They were both raised Catholic but are
not practicing their religion. They do not belong to a
church. They describe themselves as spiritual.
The parents identified that both of them and Sabrina
are having difficulty adjusting to the expansion of their fam-
ily and the shift in their family roles. They state that they
are most concerned with Sabrina’s adjustment to the new
baby. They state that they just do not know the best way to
help her. They shared that they thought that since this was
the “second time around” they believed they could be
even better parents. They have been frustrated thinking
about how to cope with what to do with two young chil-
dren. The nursing diagnosis Readiness for Enhanced Par-
enting is related to the new role of parents of two children
and is evidenced by the parents’ subjective statements
about parenting, Sabrina’s reactions to the new baby, and
parents asking for information and help on sibling rivalry.
Bono Family Intervention:
Together, the nurse, along with Matt and Libby, review the
family genogram (see Fig. 4-8), which helps the couple vi-
sualize the family. The parents decide that Ava is the best
person to come to help at this time. They say they will talk
later with Matt’s brother and family about sharing some
childcare. They complete a family ecomap (Fig. 4-9) to
help assess what is creating stress and determine what
could help alleviate family stress.
Vicki provides Matt and Libby with several educational
packets about toddlers and new infants. She directs them
to several online Web sites after she confirms that they
have computer skills. They discuss ideas on how both par-
ents can make personal time to spend with each daughter.
They brainstorm ways to help Sabrina interact with Hannah
but to keep Hannah safe from aggressive toddler behavior
132 Foundations in Family Health Care Nursing
Strong relationship
Weak relationship
Tense relationship
Direction of
energy flow
Day-care
center
Matt’s brother
and wife
Family health
insurance
Computer
resources
parenting
Libby’s
work
Ava
Vicki, RN
Matt’s
work
FIGURE 4-9 Bono family ecomap.
3921_Ch04_105-136 05/06/14 10:58 AM Page 132
to a new sibling. They plan to talk with the day-care
providers so they can be effective with their help for
Sabrina. They will call Ava as soon as they get home to
plan for her visit. Vicki makes a follow-up appointment with
the Bono family for their next well-baby visit and to see
how they are progressing with both children.
Bono Family Evaluation:
Vicki plans a follow-up phone call to check in with Libby
and Matt. At the next visit, Vicki will revisit the family action
plan with Libby and Matt to see whether their priority fam-
ily concerns remain the same, or have decreased/in-
creased or disappeared. Vicki plans to observe Sabrina’s
behaviors to see how she is coping and whether she is
adapting in more positive ways. She will talk with the par-
ents to assess their anxiety level. She will observe the par-
ents and their interactions with both children.
Nurse Reflection:
Vicki reflects about her work with the Bono family. She de-
termines that her therapeutic communication skills were
excellent. She showed empathy and validated the family’s
concern for the added stresses that a newborn child cre-
ates for a family. The 7-day-old well-baby visit in the clinic
setting presented an ideal time to observe and address
parenting techniques and ease parental concerns. Learning
how to shift focus from the more medical concern of the
well-baby to family dynamics was the most challenging as-
pect, yet also the most rewarding. The interventions were
appropriate and truly empowered their overall ability to
cope and function as a family.
Family Nursing Assessment and Intervention 133
SUMMARY
■ Conducting a family assessment includes the
following components: assessment strategies,
including how to select assessment instru-
ments, determining the need for interpreters,
assessing for family health literacy, and dia-
gramming family genograms and ecomaps.
■ Family nurses must work in partnership with
families as they build from a strengths model
and not a deficit model.
■ Using the family assessment approach out-
lined in this chapter, nurses and families to-
gether identify the family priorities.
■ The Family Reasoning Web is a systematic
method used to ensure that families are
viewed in a holistic manner, which also helps
to keep the interventions oriented to family
strengths.
■ Family interventions need to be tailored to
each individual family, with consideration of
the family’s structure, function, and
processes.
■ By subscribing to and selecting a theory-
based approach to assessment, and formulat-
ing mutually derived intervention strategies,
families are more likely to be committed
and follow through with family plans and
interventions.
■ Family nurses serve as the catalyst for assess-
ment, intervention, and evaluation that are
specific to family identified needs.
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137
Family Social Policy
and Health Disparities
c h a p t e r 5
Isolde Daiski, RN, BScN, EdD
Casey R. Shillam, PhD, RN-BC
Lynne M. Casper, PhD
Sandra M. Florian, MA, PhD Candidate
C r i t i c a l C o n c e p t s
■ Health disparities arise from complex, deeply rooted social issues, and are directly related to the social and political
structure of a society.
■ Many factors contribute to (determine) health status, including educational level, socioeconomic status, and physical
surroundings.
■ It is critical for nurses to recognize the link between the determinants of health and health disparities.
■ The social and political structures of a society influence how health care is delivered to and restricted from those in
need. An upstream approach of health promotion and disease prevention is more effective than a downstream
approach of reactive treatment of disease.
■ For those who are sick, access to quality, affordable health care should be considered a basic human right from a
societal perspective. All aspects of health care should be designed to minimize disparities.
■ The policy decisions made by a society or government about families and how they are legally defined, what
constitutes a legal relationship, and how health care is delivered have a profound effect on families and their health.
Defining families from a legal perspective may contribute to health disparities by restricting access to social and
health care services. Ethical issues can arise if we restrict care to families by how they are defined legally.
■ In the past, the profession of nursing had a well-defined role in advocating for vulnerable populations. Recently,
nursing involvement in the development of health policy from either professional organization or individual
perspectives has declined, resulting in increased health disparities for families.
■ Nursing professionals can benefit from theoretical and practical education about social policy issues, resulting in
resounding effects on the health of a family.
■ Nurses can participate in advocacy related to family policies at all levels of health care systems in the context of society.
■ Illness of one member affects all members of the family, and in turn, family health affects all of society. Therefore, nurses
have to consider the whole family unit within the context of the changed health situation and larger social system.
3921_Ch05_137-164 05/06/14 10:58 AM Page 137
This chapter exposes the nurse to social issues, be-
havioral risks, and disparities that affect the health
of families. Threaded throughout the chapter is the
role of the nurse providing care within a framework
of family nursing. Specifically, this chapter presents
the key components that contribute to health
disparities between families in the health care sys-
tem. It explores health disparities in the context
of health determinants, social policy, and the
nurse’s role with respect to social policy. This
chapter also discusses the unique factors that affect
health policy and family health in both Canada and
the United States. At the completion of this chapter,
the nurse will have developed a broad understand-
ing of social policy and how it can contribute to or
mitigate health disparities. Armed with this knowl-
edge, nurses can assist families to adopt health pro-
motion and disease prevention strategies and can
advocate for families in their organizations, com-
munities, and nations for policies that minimize
disparities and maximize access to resources.
DEFINING SOCIAL POLICY
AND HEALTH DISPARITIES
It is critical first to create a common understanding
of and foundation for the concepts underlying the
substance of the chapter, such as health determi-
nants, health disparities, and family social policy.
This section also provides a brief overview of where
both the United States and Canada stand in terms
of health care coverage for all citizens.
Determinants of Health
The determinants of health are defined as factors
that directly influence the health of individuals,
families, and communities (World Health Organi-
zation [WHO], 2012a). WHO (2012a) defines social
determinants of health as “the conditions in which
people are born, grow, live, work and age, including
the health system. These circumstances are shaped
by the distribution of money, power and resources
at global, national and local levels” (paragraph 1).
More specifically, determinants include a person’s
demographic characteristics, such as gender, race,
and ethnicity, which cannot be changed, but to
which societal responses can be altered. They also
include characteristics that can be changed. These
changeable characteristics are considered behavioral
or social. Behavioral determinants include activities
such as eating habits, smoking, substance use, phys-
ical activity, and coping skills. Social determinants
include physical, social, and economic environ-
ments, which further break down into income,
housing, education, employment, access to health
care, public safety, transportation, and availability
of community-based resources (Hunter, Neiger, &
West, 2011; Mikkonen & Raphael, 2010; U.S.
Department of Health and Human Services
[USDHHS], 2010). Along with demographic and
behavioral ones, these social determinants have a
strong, indelible influence on the health of families
and will continue to contribute to health dispari-
ties within family systems. An uneven distribution
of the social determinants of health is often
reported as the root problem of health disparities.
Without the necessary financial resources for a
healthy lifestyle, for example, it is difficult or even
impossible to overcome such disparities.
Health Disparities
Health disparities are defined in the United States
and Canada as follows: (a) health differences for
particular populations that are (b) closely linked
to social or economic disadvantage and (c) result
in distinct differences in the presence of disease,
health outcomes, or access to care (Public Health
Agency of Canada, 2012; USDHHS, 2010). Health
and health status are complex concepts, and no
universal agreement has been reached on the def-
initions. WHO defines health as a “state of com-
plete physical, mental, and social well-being and
not merely the absence of disease or infirmity”
(WHO, 2012b). This basic definition has not
been changed since it was published in 1948.
Later, the WHO (1986) added the following:
“Health is seen as a resource for living, a positive
concept” that affects the extent an individual is
able to change and cope with the environmental
factors. These definitions, combined, will be used
for the purposes of this chapter.
Family Social Policy
An exploration of health determinants and health
disparities logically begins with a discussion of so-
cial policy and its impact on families. But what
constitutes social policy? Policy can be under-
stood broadly as a course of action. Social policies
138 Foundations in Family Health Care Nursing
3921_Ch05_137-164 05/06/14 10:58 AM Page 138
are those policies that include social concepts,
such as health, education, housing, and employ-
ment affecting people’s everyday lives. Multiple
social issues affect the health of families; in effect,
they both create and mitigate health disparities.
Nevertheless, social policies are developed for the
purpose of mitigating health disparities and pro-
moting equity and social justice. Social justice has
been defined as “full participation in society
and the balancing of benefits and burdens by all
citizens, resulting in equitable living and a just or-
dering of society” (Buettner-Schmidt & Lobo,
2012, p. 948). Some examples of social policies
adopted in the United States that have had re-
sounding effects on the health of families include
the State Child Health Insurance Program
(SCHIP), Medicare Part D, and the Welfare-
to-Work program. These programs, enacted dur-
ing the 2000s, were intended to improve access to
health care, manage costs, reduce taxpayer burden,
and thereby ultimately address health disparities.
Interestingly, however, the very policies created to
mitigate health disparities often result in the most
vulnerable of these populations experiencing even
further challenges. For example, Medicare Part D
was enacted in 2006 to increase prescription cov-
erage for older adults. Although mean annual out-
of-pocket medication expenditures have decreased
by 30% to 50%, older adults with persistent pain
experience additional disparities (Millett, Everett,
Matheson, Bindman, & Mainous, 2010). Multiple
factors contribute to these disparities: pain medica-
tions are often more expensive than many other
medications, Medicare part D reimburses a lower
percentage of pain medications than other medica-
tions, and Medicare does not cover complementary
or alternative therapies often used for pain man-
agement such as massage therapy, acupuncture, or
transcutaneous electrical nerve stimulation. Cur-
rently, tremendous social policy changes are under-
way in the United States with respect to health care
access, changes that will bear heavily on the health
of the population.
Briefing on the Current State of Health
Care Policy
The United States is in the midst of a transition to
a more affordable and accessible health care system.
The Affordable Care Act (ACA), passed in March
2010 (USDHHS, 2011b), seeks to enhance access
to health insurance. Despite much legislative and
legal wrangling, the ACA was upheld by the U.S.
Supreme Court in 2012 and implementation efforts
began in 2013 (USDHHS, 2011b). The immediate
benefit of the law will be to decrease disparities
in access to health care insurance (and hence in
health) by, for example, providing expanded cov-
erage to young adults, addressing inconsistencies
in Medicare drug benefits, and disallowing cover-
age denial for many pre-existing health conditions.
Additionally, beginning in 2013, the approximately
40 million uninsured U.S. citizens will be able
to access health coverage through the Health
Insurance Marketplace. The Marketplace, a set of
government-regulated and standardized health
care plans, will allow those without insurance to
submit one application to choose from multiple
private-sector policies. The selection is based on
their individual eligibility, but there is no possibil-
ity of being denied coverage or being charged a
higher premium due to pre-existing treatments or
conditions (USDHHS, 2011b).
Despite the progress sure to be wrought by these
recent changes to the health care system, the United
States will continue to face health disparity issues for
many years to come. The long-standing lack of a
universally available health care system has resulted
in the development of social systems that will con-
tinue to influence determinants of health (Mikkonen
& Raphael, 2010; Raphael, Curry-Stevens, & Bryant,
2008). In fact, on an annual basis, it is estimated that
nearly 50 million residents of the United States have
no health insurance (Kaiser Family Foundation,
2011). More than three-quarters of those uninsured
are from working families whose employers do not
offer such coverage. Young adults are further dis-
proportionately affected, as their low incomes make
it more difficult to afford coverage if it is not
provided by the employer (Kaiser Family Founda-
tion, 2011). Women and children are also dispro-
portionately affected because they are more likely
to be living below the poverty level. Without a
payment system for health coverage, many people
delay seeking health care services, which increases
the likelihood that illness or need for services will be
at a crisis level when they enter the system and re-
quire intensive downstream care. When this delay
occurs, costs for health care increase.
The Centers for Medicare and Medicaid Serv-
ices is a governmental agency in the United States
with responsibility for Medicare, Medicaid, SCHIP,
Family Social Policy and Health Disparities 139
3921_Ch05_137-164 05/06/14 10:58 AM Page 139
the Health Insurance Portability and Accountability
Act (HIPAA), and the Clinical Laboratories Im-
provement Amendment. Medicare is a health
insurance program for people older than 65 years,
certain disabled individuals younger than 65 years,
and those with end-stage renal disease. Medicare
covers nearly 50 million persons on an annual basis
(Kaiser Family Foundation, 2012). Medicaid is a
federal–state partnership health insurance pro-
gram for eligible low-income groups and is man-
aged by individual states. SCHIP was enacted in
1997 to address the lack of health insurance cov-
erage of children who did not qualify for Medicaid.
In 2009, President Obama signed the Children’s
Health Insurance Program Reauthorization Act
(CHIPRA) into law, providing new financial re-
sources and options to expand and improve health
coverage for children through both Medicaid and
SCHIP (USDHHS, 2011c). This restructuring of
the program has been successful in delivering cov-
erage to more than 40 million children compared
to only roughly 10 million in the earlier part of the
century (USDHHS, 2011c). Enrollment growth is
attributed both to the restructuring of the program
and the economic downturn that began in early
2008.
Also worth noting is the Prenatal Care Assis-
tance Program (PCAP), which targets pregnant
women who meet certain income requirements
and are eligible for part of the Medicaid system.
The PCAP program includes prenatal care; deliv-
ery services; postpartum care up to 2 months after
the birth of the baby; referral to the Women, In-
fants, and Children Program (WIC); and infant
care for 1 year.
Because in the United States the majority of
government health care programs are managed and
delivered by individual states with only partial sup-
port by the federal program, the burden to state
budgets is enormous. Some unique programs have
been implemented to help individual states bridge
this gap in costs of health care coverage. The state
of Massachusetts now mandates that residents have
some form of health insurance, similar to the com-
mon requirement that anyone with a car have
collision insurance. Residents who do not have cov-
erage are at risk for fines and tax penalties. A Mas-
sachusetts state-subsidized plan, Commonwealth
Care, was established to offer affordable health care
to residents. Still, the potential exists of posing an
additional burden on the poor, especially if they are
fined for not enrolling in something they can ill
afford.
Canada
By way of contrast, Canada has boasted universal,
federally funded health care access for physi-
cians’ services, hospital care, and diagnostics since
1966 (Medical Care Act, Canada, 1966). Canada’s
Medical Care Act (1966) has had a major influence
on social policy affecting health care. It ensures
that on a national level, hospital care, doctor’s vis-
its, and diagnostic services are accessible to every-
one, without charge. Many people also have
additional extended benefit plans through their
employers, for medication coverage, dental care,
and other therapies. Persons who are on social as-
sistance programs, such as welfare or disability
pensions, as well as those receiving old-age pen-
sions, have additional publicly funded coverage
for essential medications and basic dental care.
These additional benefits do not, however, extend
to those working for low wages with no additional
benefits, who often cannot afford their medica-
tions (Pilkington et al., 2010). Although some
provincially funded coverage is available for this
group, obtaining it is very difficult; it is only
meant for dire situations of need, and disqualifies
most of those working for low wages. As a result,
many prescriptions remain unfilled as choices
have to be made between paying the rent, feeding
the family, and buying medications (Pilkington et
al., 2010). Although universal health care exists, it
does not cover all aspects of health.
So the system is not perfect. There is a gap in
the health care delivery for those who lack private
insurance. Provinces and municipalities provide
long-term care for persons in need, but there are
never enough facilities. At various times, some
cash-strapped provinces have attempted to imple-
ment user fees for doctor and emergency depart-
ment visits. Due to immense public pressure, the
federal government so far has stepped in to pre-
vent this from happening. One policy, severely
curtailing federal health care funding for refugees,
was implemented in 2012 by the federal govern-
ment, leaving this vulnerable and often trauma-
tized group unprotected (Canadian Association of
Community Health Centres [CACHC], 2012;
Service Canada, 2012). This move was seen as a
major injustice by the public—physicians’ and
nurses’ associations, as well as hospitals and
140 Foundations in Family Health Care Nursing
3921_Ch05_137-164 05/06/14 10:58 AM Page 140
community health centers, have voiced a strong
unified opposition to this policy. In the meantime,
much of needed care for this group is provided
free by volunteer health providers, while individ-
ual hospitals and provinces are absorbing the costs
for emergency treatments within their general
budgets. Care is provided first and questions are
asked later (CACHC, 2012).
MODELS
There are several models that pertain to health
determinants and implementation of social policy
that are worth mentioning briefly here. The Social
Determinants of Health Model (Dahlgren &
Whitehead, 1991; Institute of Medicine [IOM],
2002, p. 404) conceptualizes an approach to assess-
ment and planning care using a foundation of
family nursing theory. This model, depicted in
Figure 5-1, can assist the nurse in understanding
how—aside from the behaviors of individuals—
physical, social, environmental, and psychological
components influence and affect the state of family
health. In this model the general social, economic,
cultural, and environmental conditions are the con-
text and give rise to the next layer, which consists
of the social determinants of health, the specific
social and physical factors representing healthy
or unhealthy living conditions. In turn, these fac-
tors influence social and community networks,
which then influence the lifestyles possible within
this context. The center of the model finds the
individual/family with their age and gender, enabled/
restricted by the contextual layers. Nurses must
take into consideration the family within context to
provide holistic care. Changing any of the deter-
minants depicted can bring about changes in family
health, as they impinge upon the primary underly-
ing conditions of health and illness (Canadian
Nurse Association, 2012). Using this model pro-
vides an overview of how all factors interrelate and
what possibilities for health promotion may emerge
at the institutional and community/societal levels.
The Care Model (Fig. 5-2), pertaining specifi-
cally to health care delivery, can be used to guide
nurses’ care for families/communities in the context
of implementing social policy. Initially developed
by the Robert Wood Johnson Foundation to deliver
quality care to those with chronic illness, the Care
Model has since been adapted to assist health care
teams change the wider health care delivery sys-
tems with a goal of eliminating health disparities
(Dahlgren & Whitehead, 1991). Components of
the Care Model include the health care organiza-
tion, community resources and policies, decision
support, delivery system support, clinical informa-
tion systems, and self-management support. Fur-
ther, the Care Model has the potential to frame the
work necessary to address complex self-management
problems with a social-policy approach, which in-
cludes forming community partnerships to support
self-management. Acknowledging the importance
of family and community is essential in order to
implement a successful program, as humans are re-
lational social beings depending on each other.
A proactive health care team employing the Care
Model, for example, might initiate an intervention
policy of a community garden and kitchen within
a poor neighborhood, where many clients have
Family Social Policy and Health Disparities 141
Agriculture
and food
production
Education
Water and
sanitation
Health care
services
Housing
Work
Environment Unemployment
Living and working
conditions
G
en
er
al
so
cio
eco
nom
ic, cultur
al, and environmental conditionsSoc
ial a
nd community networks
Ind
ividu
al lifestyle factorsAge, sex, and
constitutional factors
FIGURE 5-1 Social Determinants of
Health Model suggested by Dahlgren
and Whitehead (1991).
3921_Ch05_137-164 05/06/14 10:58 AM Page 141
type 2 diabetes and lack the resources to buy healthy
foods. Clients referred to this program can share
growing food and cooking meals together. This in-
novative policy adds new resources, while enhancing
client skills and self-management support. At the
same time, the program also strengthens commu-
nity ties and cohesion.
Similarly, Canadian scholars Doane and Varcoe
(2005) describe a socio-environmental approach
to nursing care focused on relationships within fam-
ilies, communities, and health care systems. Health
is seen by these authors as a socio-relational experi-
ence that is shaped by contextual factors. As in the
models discussed earlier, nurses need to take into
consideration not only the clients and their families
but also all of their physical and social surroundings.
Working closely with families and communities and
building on the concept of health as a resource for
living, the socio-environmental approach recognizes
that health is deeply rooted in human nature and
environmental structures (WHO, 1986). Knowing
their needs and situations, empowered communities
therefore are able to promote health with the
capacity “to define, analyse and act on concerns in
one’s life and living conditions” (Doane & Varcoe,
2005, p. 29). This approach, like the Care Model,
functions under the premise that a comprehensive
social-health-policy approach must be utilized for
optimal delivery of health care, as change is most
effectively brought about at the level of physical and
social environments.
SOCIAL DETERMINANTS AND
RESULTING HEALTH DISPARITIES
Health disparities are such an overwhelming prob-
lem in the United States that Congress charged the
Institute of Medicine (IOM) to investigate and de-
velop a report on the subject. The landmark IOM
report, Unequal Treatment: Confronting Racial and
Ethnic Disparities in Health Care (2003), detailed
long-standing and deeply rooted inequalities in
health care directly related to race and ethnicity.
Despite the IOM providing a comprehensive re-
view of the contributing factors to health disparities
and recommendations to promote health equity, a
2012 evaluation on the progress toward reducing
health disparities reveals continued health dispari-
ties (IOM, 2012). For instance, African Americans
continue to experience higher rates of death from
heart disease and cancer than white Americans, and
children who live in urban areas are more likely to
have asthma than children living in less population
dense areas (IOM, 2012). These health disparities
continue to correlate with certain environments
142 Foundations in Family Health Care Nursing
Care Model
Functional and Clinical Outcomes
Productive interactionsProductive interactions
Health System
Health care organization
Community
Self-
management
support
Clinical
information
systemDelivery
system
design
Decision
support
Resource
and policies
Informed,
activated
patient
Prepared,
proactive
practice team
FIGURE 5-2 The Care Model. (From Texas
Association of Community Health Centers. (2008). The care
model. Retrieved April 29, 2009, from http://www.tachc.
org/HDC/Overview/Care Model.asp, with permission.)
3921_Ch05_137-164 05/06/14 10:58 AM Page 142
and lack of adequate resources in multiple areas,
such as limited access to health care, exposure to
environmental toxins in impoverished environ-
ments, personal behaviors related to substance
abuse, inadequate nutrition, lack of physical exer-
cise, and lack of treatment for mental illnesses
(IOM, 2012). This section will discuss key social
determinants of health, their direct outcomes and
effects, and the associated health disparities.
Poverty
Social determinants of health are interrelated and
mutually reinforcing. Poverty is likely the most
fundamental social determinant contributing to
health disparities. It influences the other social de-
terminants, such as housing, food and job security,
education, and lifestyle choices, and is related to
racism and chronic illness. So, it is impossible to
discuss one without delving into the others. For in-
stance, poor-quality housing or overcrowding—a
result of poverty—affects health by contributing to
stress and safety issues, while mildew and dampness
might trigger asthma or other respiratory condi-
tions. Unemployment/employment insecurity,
which can result in poverty, limits the choice of
affordable housing, and living in a low-resource
community further adds to unhealthy lifestyle
choices. For example, areas where affordable hous-
ing is located tend to lack public transportation and
grocery stores, and they have less access to fresh
fruits and vegetables, which makes shopping for,
and eating, healthy foods difficult. Often, the only
choice is to buy unhealthy processed foods from
the local variety stores, and frequently at high
prices (Hilmers, Hilmers, & Dave, 2012).
Poverty creates serious issues when it comes to
housing and can result in homelessness for many
families who live below the poverty level. Homeless
children are three times more likely to have been
born to a single mother than their nonhomeless
counterparts (National Center on Family Home-
lessness, 2008). Education is a strong predictor of
eventual stability, success, and health, yet education
is not (or cannot be) emphasized within homeless
communities (National Alliance to End Homeless-
ness, 2006). In the end, homeless children are less
healthy—they are more likely to have developmen-
tal delays, to have learning disabilities, and to re-
peat a grade in school (National Center on Family
Homelessness, 2008).
In the United States today, as well as in Canada,
concern exists over a widening income gap leaving
many families and individuals below the poverty
level. Interestingly, although the annual median
household income for 2011 experienced a contin-
ued decline by 1.5% to $50,054, the national
poverty rate only declined 0.1%, indicating that
the top-income-earning Americans continue to
increase in wealth and the middle- and lower-
middle-class Americans are experiencing signifi-
cant declines in income (Luhby, 2012). This widen-
ing income inequality between the wealthy and
the middle class poses a serious threat of more
Americans heading toward poverty. Today, more
than 4.9 million Americans, including 1.2 million
children, live in poverty in the United States. As
explored further below in the sections on race and
gender, African American families and those with
female heads of households disproportionately ac-
count for those living at or below the poverty level.
African Americans earn 61% ($31,969) of what
non-Hispanic white individuals earn ($52,423).
Women continue to earn approximately 77% of
what men earn overall (DeNavas-Walt, Proctor,
& Smith, 2007).
Canada fares only slightly better, as there is a
widening income disparity too. Whereas the top
10% of incomes represent more than a quarter of
total incomes, the bottom 10% only represents
1/40th of total incomes. The 80% in between earn
the remaining 75% (Canadian Centre for Policy
Alternatives [CCPA], 2013). The Canadian Index
of Wellbeing [CIW] (2012, p. 2), reported that
Canada, since 2008, is experiencing an economic
backslide. From 1994 to 2010, even though Canada’s
Gross Domestic Product (GDP) grew by an im-
pressive 28.9%, improvements in Canadians’ well-
being grew by a significantly smaller 5.7%. The
key message is that despite years of steady eco-
nomic growth in Canada, this prosperity has not
been fairly distributed among the Canadian popu-
lation (CIW, 2012), as income disparities continue
to rise. CIW further pointed out that income in-
equality, measured as the difference between the
richest 20% and the poorest 20% of Canadian fam-
ilies, is particularly problematic, as this gap has
grown by over 40% since 1994.
In the United States, availability of employment-
based health coverage has declined from 64.4%
in 1997 to 56.5% in 2010 (U.S. Census Bureau,
2010). This decline has left many more workers
Family Social Policy and Health Disparities 143
3921_Ch05_137-164 05/06/14 10:58 AM Page 143
and their dependents without health coverage.
The cost of health coverage is well beyond the
means of those living in or close to the poverty
level. Meanwhile, the public debate on an appro-
priate level of support for families who lack basic
housing, food, health services, or social stability
continues. Another important factor that affects
poor families is a lack of affordable day care. To
relieve stress on the families and to escape
poverty, families need reliable and quality day
care allowing both parents to work.
Multiple other factors worsen the influence of
poverty on health outcomes (Woolf, Johnson,
Phillips, & Philipsen, 2007), factors such as access
to resources, health literacy, gender, ethnicity,
and education. All of these factors are considered
major contributors to poor health, particularly
cardiovascular disease (Shikatani et al., 2012),
type 2 diabetes (Chaufan, Constantino, & Davis,
2011; Pilkington et al., 2011), and mental illness
(Mental Health Strategy of Canada, 2012; Mental
Health Commission of Canada, nd). It is impor-
tant that nurses and other health professionals
support policies that help to eradicate poverty
and the resulting health disparities (Kirkpatrick
& Tarasuk, 2009).
Gender
Gender is a social determinant everywhere, with
women and sexual minorities experiencing dispar-
ities in access to resources and well-paying jobs
(Mikkonen & Raphael, 2010). Women earn less
than men when performing the same job, approxi-
mately 77% of men’s wages (Devas-Walt, Proctor
& Smith, 2007), yet they are more likely than men
to be heads of single parent households. In fact,
gender is one of the factors that further exacerbates
poverty and, in turn, contributes to even greater
health disparities. Gender affects health care in
other ways as well. For example, women with car-
diovascular disease are more likely to receive a mis-
diagnosis, as their symptoms do not follow the
typical presentation men demonstrate, and most
tests for cardiovascular disease were developed
based on male physiology (Schiff, Kim, Abrams,
Cosby, & Lambert, 2005). Women are also less
likely to receive referrals for surgical procedures,
pain management, and other health conditions
even when displaying comparable symptoms as
male controls.
Race and Ethnicity
Racial and ethnic minorities, or those of First
Nation status, tend to have lower incomes and
lower-quality jobs (Mikkonen & Raphael, 2010),
factors that contribute directly to health disparities.
Recent Canadian data show that the health of non-
European immigrants of color deteriorates over
time whereas the health of European immigrants
is actually superior to that of Canadian-born resi-
dents. Hispanic/Latino men are three times as
likely to contract HIV as white men, and Latino
populations are disproportionately affected by
HIV, accounting for nearly 20% of new infections
in the United States (Centers for Disease Control
and Prevention [CDC], 2013a). Other examples of
disparities based on race and ethnicity are as fol-
lows: African American, American Indian, and
Puerto Rican infants have higher death rates
than white infants; African Americans, Hispanics,
American Indians, and Alaska Natives are twice as
likely to have diabetes than non-Hispanic whites;
and Hispanic and African American older adults are
less likely than non-Hispanic whites to receive in-
fluenza and pneumococcal vaccines (CDC, 2013a;
Rodriguez, Chen, & Rodriguez, 2010).
Additionally, members of these groups may ex-
perience overt or subtle differences in treatment
in the health care system, due to discrimination
against minority populations. Self-reported racial/
ethnic discrimination encountered by health care
providers is significantly associated with lower
quality of care indicators, such as development of
foot disorders and regulation of HbA1c (Peek,
Wagner, Tang, Baker, & Chin, 2011). Other re-
cent studies indicate that although minorities are
more likely to require health care, they are less
likely to receive health services. Further, even when
access is equal, minorities are far less likely to re-
ceive surgical or other therapies. Nurses have the
moral obligation to advocate for clients who are
faced with discrimination in the system and ensure
that they receive the same care and treatment as
everyone else.
Presence of Chronic Illness
The presence of chronic illness is a determinant
that leads to health disparities beyond the mere
presence of the chronic illness. It often results in
poor quality of life and increased financial strain,
especially for those who have no or limited access
144 Foundations in Family Health Care Nursing
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to health care and resources. In severe cases
chronic illness also leads to inability to work and
therefore forces those who are ill to rely on the
social safety net, which has been increasingly cut
back over the last 20 years (Mikkonen & Raphael,
2010). Despite improvements in treatment and
management strategies for chronic illness im-
proving both quantity and quality of life, social
determinants continue to place disadvantaged
populations at risk of poor outcomes from chronic
illness. Likewise, the presence of chronic illness
itself is a determinant that leads to health dispar-
ities for and between families. If one family mem-
ber is ill the whole family is affected and often has
to pick up the financial and care burden. This is
true for the United States but also in Canada
where medications and home care, for example,
are not covered by universal health care. Unless
a patient has private insurance benefits, these
costly treatments place a burden on families. The
following section explores several common chronic
illnesses and the ways that they contribute to health
disparities.
Type 2 Diabetes
Type 2 diabetes is on the rise and is four times
more likely in low-income communities than in
their higher-income counterparts. Lower-income
communities often also coincide with high pro-
portions of immigrant population and people on
social assistance (Mikkonen & Raphael, 2010).
Health promotion efforts involving diet and
exercise to ward off obesity have a significant in-
fluence on disease rates; however, they require
sufficient resources (Webster, Sullivan-Taylor &
Turner, 2011). Due to lack of resources, preven-
tive measures, such as keeping a healthy weight,
are much less likely in lower-income groups
(Chaufan et al., 2011; Dinca-Panaitescu et al.,
2012; Pilkington et al., 2011; Raphael, 2008; Raphael,
Daiski, Pilkington, Bryant, Dinca-Panaitescu &
Dinca-Panaitescu, 2011). Aboriginal peoples, for
example, only developed diabetes when they
started to eat Western foods, instead of their
traditional diets. Before the 1940s, this disease
was virtually unknown in that group (Health
Canada, 2011).
Dinca-Panaitescu et al. (2012), however, pres-
ent research showing that even with obesity levels
the same, diabetes rates were four times higher
among those persons who lived in lower-income
neighborhoods, confirming that the reasons for
this disparity are complex and multilayered. These
layers include lack of needed resources for a
healthy lifestyle, such as healthy diets; lack of ex-
ercise; inability to pay for prescription drugs; lower
incomes; unhealthy environments; racial and/or
ethnic discrimination; and stress. Researchers have
found evidence that worry and chronic stress,
which leads to high cortisol levels, plays a role in
chronic disease (Brunner & Marmot, 2006).
Chronic stress disproportionately affects most
minority ethnic groups who are often subject to
discrimination and the constant worries attached
to low incomes. When people have to cope with
the added expenses of the illness, it increases stress
further, creating a cycle and exacerbating chronic
illness. As stated earlier, the social determinants
that create health disparities are multilayered,
complex and mutually reinforcing.
Asthma and Other Lung Diseases
According to the American Lung Association
(2008), approximately 34.1 million Americans re-
port a diagnosis of asthma, and the incidence of
asthma is increasing, with similar reports from
Canada (Public Health Agency of Canada, 2012).
Direct health costs for treating asthma are esti-
mated to be $10 billion annually. Asthma is the
leading chronic illness among children and is the
third leading cause of hospitalization for children
younger than 15 (American Lung Association,
2008). It is associated with poor-quality physical
environments, such as increased air pollution and
substandard housing. Major asthma attack triggers
include secondhand tobacco smoke, dust, pollu-
tion, cockroaches, pets, and mold. Less common
triggers include exercise, extremes of weather,
food, and hyperventilation (National Center for
Environmental Health, 2013).
In adults we find chronic obstructive pulmonary
disease (COPD) and lung cancer to be serious
chronic diseases that shorten life and decrease its
quality. Lung diseases, like all other diseases, are
associated with social determinants such as poverty,
as well as with considerable health care costs.
HIV/AIDS
More than 1 million people live with HIV/AIDS
today in the United States. AIDS is now seen as a
chronic, treatable disease in America and other de-
veloped countries (AIDS in America, n.d.). With
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the introduction of antiretroviral drugs in the 1990s,
HIV has been treated as a chronic illness, and more
people are living longer with the infection. Unfor-
tunately, the treatability has contributed to an
“unsafe sex problem” leading to complacency, and
the infection rate, instead of declining, has remained
stable since 2006 (AIDS in America, n.d.).
Mental Illness
Mental illness is widespread and very debilitating,
particularly due to the stigma attached. It often
leads to homelessness and family breakup, two
other significant health determinants. It is esti-
mated that one in five persons in North America
will have a mental illness at some point in their lives
and it can strike at any age, including childhood.
Those with mental illness who are poor are more
likely to end up homeless and destitute (Canadian
Mental Health Association [CMHA], 2009).
of nurses to help clients with chronic diseases is
teaching health literacy.
Health Literacy
Health literacy, first noted in the Healthy People
2010 objectives, is defined as “the degree to
which individuals have the capacity to obtain,
process, and understand basic health information
and services needed to make appropriate health
decisions” (National Network of Libraries of
Medicine, n.d.). Health literacy is one of the so-
cial determinants that contributes to health dis-
parities; but though a relationship between health
disparities and health literacy has been estab-
lished, it is complex. The IOM found that ap-
proximately 9 out of 10 adults have difficulty
understanding health information (IOM, 2011),
and the Canadian Council on Learning (2007)
found 60% of Canadians are health illiterate. In-
dividuals with low health literacy do not under-
stand health information, so it affects their health
outcomes disproportionately because they seek
fewer health screenings, they use urgent or emer-
gency care, they experience errors in medication
dosing and scheduling, they lack alternatives in
treatment regimens, and they are unable to
access accurate health-related information.
Nurses, as educators and advocates, must con-
sider the health literacy of the patients and fami-
lies that they serve. Explaining health-related
concepts in plain language will help to ensure
that patients understand the information cor-
rectly. Nurses may also assist families by filling
out complicated forms when applying for social
support or filing insurance claims (Street Health
Report, 2007).
The Definition of Family
The definition of family, rarely challenged until
recent times in the United States, has major social
implications in terms of health disparities. Most
directly, the definition of family can influence who
is able to access health care and social support
resources and who is not. The typical definition
of family is “two or more people who are related
by blood, marriage/partnership or adoption, that
live together for a certain period of their lives”
(Statistics Canada, 2011). In Canada “the tradi-
tional family, a married couple with 2.5 children,
146 Foundations in Family Health Care Nursing
In North America it is estimated that 4 persons
out of 10 will develop cancer in their lifetime. In
recent years, with improved detection and treat-
ments, many cancers are now cured or, like AIDS,
can become chronic diseases that people live with
for some time. Similarly, cardiovascular disease is
becoming a chronic health condition (Hemingway,
2007; Shikatani et al., 2012), with those affected
needing support to manage their disease. As per-
sons with chronic illnesses live and work within
their communities, they need to learn how to self-
manage their conditions (Health Council of
Canada, 2012). Nurses as advocators and coaches
have a large role to play here, when they care for
individuals and families within the context of their
physical and social environments. One of the roles
3921_Ch05_137-164 05/06/14 10:58 AM Page 146
has been reconfigured to include cohabiting cou-
ples (with or without children), lone parent fami-
lies, blended or step-families, same-sex couples,
couples who remain childless by choice, and inter-
generational families” (Statistics Canada, 2011).
The definition is evolving as families evolve, but
perhaps not as quickly as necessary.
Members of a “family” can be given access to
or denied health insurance, housing, and access to
social and health programs. In the United States,
the Administration for Children and Families,
overseen by the USDHHS, “is responsible for
federal programs that promote the economic and
social well-being of families, children, individuals,
and communities in the U.S.” (USDHHS, 2013a).
Such programs include, for example, Temporary
Assistance to Needy Families (TANF), the Healthy
Marriage Initiative, and Head Start (USDHHS,
2008). But because of how families are legally de-
fined, many individuals who consider themselves
part of a family unit would be ineligible for these
programs. In fact, a limited legal definition of
family can have devastating results. Take, for ex-
ample, one instance in Black Jack City, Missouri,
where a family composed of two parents and three
children was denied an occupancy permit simply
because the parents were not legally married
and the male parent was not the biological father
of the oldest child residing in the household
(Coleman, 2006).
Canada is somewhat more liberal in this regard.
The provinces, with exception of the Province of
Quebec, legally recognize the common-law fam-
ily, meaning two people cohabitating without
being officially married (Statistics Canada, 2011).
In 1967, former Prime Minister Pierre Elliott
Trudeau, then Justice Minister, declared: “The
state has no business in the bedrooms of the
nation” (cited by Overall, 2004, p. 1). Today,
same-sex marriage is legally recognized in that
“a couple may be of the opposite or same sex”
(Statistics Canada, 2011). Canada’s recognition
of both same-sex and common-law families re-
sults in major implications for access to spousal
benefits and pensions, child custody, and other
traditionally family-oriented rites of inheritance.
Previously, only traditionally married couples of
the opposite sex were recognized as beneficiaries,
leaving many nontraditional spouses destitute
after their life partners died or divorced them.
Legal definitions of family in the United States
will continue to be blurred as families continue
to evolve through adoption, same-sex marriage,
cohabitation, and blended families.
Education
Education is another key social determinant of
health. Schools in affluent areas have better re-
sources for the most part. In poor areas, poor qual-
ity education and high drop-out rates contribute
further to poverty, preventing access to high-quality
jobs and incomes. School districts vary greatly, as
does the quality of education they provide. They
may be as small as a single grade school or as large
as the multimillion-pupil New York City system. In
the United States, the historical expectation is that
a locally elected or appointed school board will de-
termine the way in which the community’s children
will be educated. Federal funds, often for special
education or programs for impoverished students,
account for only about 7% of school expenditures
(Ramirez, 2002). The reporting about schools with-
out texts, without modern science laboratories or
computers, and cutting back on “frills” such as
music, art, and gym has stimulated an active search
for ways to make equitable funding available. Given
the high positive correlation between health status
and level of education, this determinant of health
and associated policies should be an area of concern
to every nurse. Education makes it possible to
obtain a better job and higher income and is the
best way out of poverty.
Health Resources
Despite the presence of the universal health insur-
ance program in Canada, some major inequities re-
main. For example, in rural areas, access to health
care is often very limited. This is of particular con-
cern in Canada’s far north, inhabited mainly by
First Nations people. Communities there are
served mostly by nurses. Although the nurses have
the opportunity to provide primary health care,
resources are limited. For major health problems
requiring surgical or other complex interventions,
or even to give birth, patients are routinely flown
out to larger centers, resulting in family separation
and lack of community support for the patient.
Using technology such as telemedicine provides
hope for improvements of health care in these un-
derserviced communities.
Family Social Policy and Health Disparities 147
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RISKS AND BEHAVIORS THAT
CONTRIBUTE TO DISPARITIES
This section focuses on the behavioral health de-
terminants that contribute to health disparities. In
popular discussions, and sometimes among profes-
sionals, health-related behaviors are treated as re-
sulting solely from conscious choice by individuals,
who are to blame if their risky behavior leads
to poor health outcomes. Many health activists, by
contrast, seek to place blame on commercial inter-
ests that profit from these behaviors or on govern-
ment policies that protect them. Research on the
causes of risky behaviors is much less developed
than is research on the consequences of such
behaviors. But even so, it is clear that these risky
behaviors are the result of multiple causes and can
be influenced by health policy in multiple ways
(Berkman & Mullen, 1997; Singer & Ryff, 2001).
This section explores obesity, alcohol use, smoking,
and other risk factors specifically pertinent to
adolescents.
Obesity
In North America, one of the most disturbing
trends in health over the past decade has been the
increase in the proportion of the population that is
overweight or obese. Obesity is defined as body
mass index (BMI) at or above the 95th percentile
of the sex-specific BMI, according to the CDC’s
BMI-for-age growth charts (CDC, 2010). BMI is
calculated as weight in kilograms divided by the
square of height in meters. Obese people are more
likely than are those of normal weight to suffer
from heart disease, stroke, diabetes, gallstones,
sleep apnea, and some types of cancer (USDHHS,
2009). Hypertension, musculoskeletal problems,
and arthritis tend to be more severe in obese
people. Obesity increased little in the U.S. popu-
lation between the early 1960s and 1980. Since
1980, however, obesity has increased dramatically
in the United States. Fifteen percent of American
adults were obese in the mid-to-late 1970s. The
prevalence of obesity doubled in the two subse-
quent decades to 31% by 2000, and by 2009–2010,
nearly 36% of adults were obese (CDC, 2012).
Women (36.2%) are more likely than men (32.6%)
to be obese (Shields, Carroll, & Ogden, 2011).
Obesity rates are lower in Canada than in
the United States, but Canadian rates have also
increased rapidly in recent years. Approximately
24% of Canadian adults were obese in 2007–2009
(Shields et al., 2011). In contrast to the United
States, in Canada men were more likely to be obese
than women; trends in the incidence of obesity are
now similar for both: in 2007–2009 24.3% of men
and 23.9% of women were obese in Canada
(Shields et al., 2011).
In 2009–2010, over one-third of adults age 65
and older in the United States were obese (CDC,
2012). Since 1999, the incidence of obesity among
older adults has increased, especially among men.
With projections for the number of older adults
to more than double from 44.2 to 88.5 million by
2050, obesity in this group will contribute signifi-
cantly to health care costs (Fakhouri, Ogden,
Carroll, Kit, & Flegal, 2012).
The percentage of children and teenagers who
are obese has been increasing dramatically since
the 1980s. In the mid-1980s in the United States,
only 5% of children were obese, yet by the early
2000s, obesity increased to 18% among children
and adolescents (Federal Interagency Forum on
Child and Family Statistics, 2012). A recent report
in August 2013 by the CDC (2013b) reveals for the
first time in decades that there is a slight improve-
ment in obesity rates in the United States among
preschool children who live in low poverty. From
2008 through 2011, data were collected in 43 states
and territories for preschool children who partic-
ipate in the Women, Infants, and Children (WIC)
federally funded program. There was a slight drop
in the obesity rates in 19 of these states, with the
largest drop of 1% in Florida, Georgia, Missouri,
New Jersey, and South Dakota. One factor that
could contribute to this new trend is changes
in the WIC program, which include eliminating
juice from food packets, less food with saturated
fats, and easier access to fruits and vegetables.
Along with these changes, the breastfeeding rates
in the United States continue to increase. Whereas
this is an excellent trend, childhood obesity
remains of deep concerns as one in eight children
are obese, with one in five African American chil-
dren and one in six Hispanic children still obese.
Boys and girls have been historically about equal in
their likelihood to be overweight, but in 2007–2008,
a higher percentage of boys (21.2%) were obese
than girls (17.3%). Mexican American and African
American teenagers are more likely to be over-
weight than are non-Hispanic white teenagers.
148 Foundations in Family Health Care Nursing
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By 2007–2008, the percentage of overweight
Mexican American teenagers was 24.2%, compared
with 22.4% for African Americans and 17.4% for
whites (Federal Interagency Forum on Child and
Family Statistics, 2012).
By comparison, in 2011, 24% of 12- to 17-year-old
Canadian boys were obese and about 17% of girls
(Human Resources and Social Development
Canada, 2013). Over the past quarter century, the
percentage of Canadian adolescents ages 12 to 17
who are overweight has more than doubled, and
the percentage of those who are obese has tripled.
North American children who eat fruits and veg-
etables frequently are less likely to be overweight.
By contrast, those who watch TV, play video
games, or spend time on the computer are more
likely to be overweight (USDHHS, 2010).
U.S. medical expenditures related to obesity are
estimated to be as high as $147 billion dollars annu-
ally (Finkelstein, Trogdon, Cohen & Dietz, 2009).
The most common recommendations for the treat-
ment of overweight and obesity include participating
in physical exercise and following dietary guidelines
for healthy eating. Although healthy diets and exer-
cise are part of the solution to the obesity epidemic,
nurses must consider constraining social and policy
factors determining health, including lack of access
to healthy foods, unsafe neighborhoods with limited
facilities for physical exercise, and cultural beliefs
and attitudes about weight and health. Overall, we
know that losing weight reduces and sometimes cor-
rects type 2 diabetes. Obesity plays a major role in
cardiovascular diseases and puts unnecessary stress
on joints, which causes them to become deteriorated
with painful arthritic symptoms. In general this con-
dition leads to debilitating health problems and may
also lead to self-esteem issues, particularly in
younger people.
Tobacco
Smoking and substance abuse are critical behav-
ioral health determinants that lead to multiple
health disparities among families in the United
States and Canada. Although smoking is still preva-
lent, it has declined steadily among adults in the
United States. In 1965, more than half of adult men
smoked, as did a third of adult women. Smoking
has declined more rapidly for men than for women,
and the gap between sexes has narrowed. By 2011,
approximately 21.5% of adult men and 17.3% of
adult women were current smokers. Prevalence of
cigarette smoking is highest among American In-
dians/Alaska Natives (31.4%), followed by whites
(21.0%), African Americans (20.6%), Hispanics
(12.5%), and Asians (excluding Native Hawaiians
and other Pacific Islanders) (9.2%) (USDHHS,
2011a). In Canada, the proportion of daily smokers
decreased from 24% to 15.1% between 1995 and
2011. In 2011, another 5% of Canadians reported
being occasional smokers. As in the United States,
more men (22.3%) were smokers than women
(17.5%) (Human Resources and Social Develop-
ment Canada, 2013).
Smoking is a significant behavioral health de-
terminant. It harms most body organs, reduces
circulation, and causes several diseases, including
coronary heart disease, chronic obstructive lung
diseases, lung cancer, leukemia, and other types
of cancer. Smoking also has adverse reproductive
effects and is associated with infertility problems,
low birth weight, and stillbirth. Smokers are
at higher risk than nonsmokers of developing
many other diseases and chronic health condi-
tions (USDHHS, 2011a). The myriad of health
implications from smoking are of critical impor-
tance for nurses to consider when planning care
for families with members who smoke. The im-
pact of the behavior on the entire family should
be included in all health teaching, with realistic
goals set by the nurse and family in collaboration
with one another.
Alcohol
Use of alcohol is a risk factor and determinant for
a wide range of poor physical and mental health
outcomes. Alcohol use is legal for adults, though
impaired driving (DUI) and, to a lesser extent, pub-
lic drunkenness are banned. Alcohol use is illegal
for minors, though widely tolerated in both the
United States and Canada. In 2011, 62.6% of
American adult men (age 21 or older) and 50.9%
of American adult women reported that they cur-
rently drank alcohol. Almost one-third of men and
16% of women reported “binge drinking” (defined
as the consumption of five or more drinks on one
occasion for men, and four or more drinks for
women) during the preceding month. In the
United States, non-Hispanic whites were more
likely than other race groups to be current drinkers,
whereas Native Americans were more likely than
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other race groups to be binge drinkers (USDHHS,
2011b). In Canada in 2011, 18.7% of those who
consumed alcohol engaged in chronic drinking, de-
fined as 10 or more drinks per week for women and
15 or more for men; and 13.1% engaged in acute
drinking, defined as three or more drinks during a
single occasion for women, and four or more drinks
for men (Health Canada, 2012).
The prevalence of illegal drug use, the particular
drugs used, and the methods in which they are
taken vary considerably over time, among racial
and ethnic groups, across social and economic
classes, and among regions of the country or even
neighborhoods. In 2011, 21.4% of Americans ages
18 to 25 reported that they were current users of
illicit drugs; this rate lessened to 6.3% among
adults age 26 or older (USDHHS, 2012). In 2011,
illicit drug use of one of five substances was re-
ported to have decreased from 11.3% in 2004
to 4.8% in 2011 among the Canadian population
age 15 or older (Health Canada, 2012). Alcohol
consumption can result in malnutrition, liver dis-
ease, and both short- and long-term cognitive im-
pairment (Antai-Otong, 2006).
Alcohol and substance abuse have serious conse-
quences for individual health. Individuals who en-
gage in excessive drinking are more likely to suffer
from high blood pressure and to develop chronic dis-
eases such as liver cirrhosis, pancreatitis, and different
types of cancers. Excessive drinking also affects
psychological health. Substance abuse also causes
unintentional injuries produced by car accidents,
drowning, falls, and other types of incidents.
Adolescence
Once children survive the first year of life, the risk
of death decreases dramatically (Federal Intera-
gency Forum on Child and Family Statistics, 2012).
The risk of death increases again in the teen years
as youths, especially male and minority youths, are
subject to heightened risk of fatal motor vehicle
accidents and homicides. In the United States,
African American teenage men are more often vic-
tims of homicide than teens in other racial and eth-
nic groups (Federal Interagency Forum on Child
and Family Statistics, 2012). For young Americans
ages 15 to 24, the most common causes of death in
2009 were unintentional injuries and homicide, ac-
counting for more than three-fourth of deaths to
young people. Additionally, the risk of dying for
those between 15 and 24 years of age was more
than twice as high for boys as for girls. Asian or
Pacific Islander teenage girls have the lowest mor-
tality rates, and African American teenage boys
have the highest. Automobile accidents account for
more deaths among American Indians or Alaskan
Natives, followed by white male and female ado-
lescents, than among other minority adolescents
(Federal Interagency Forum on Child and Family
Statistics, 2012). These distressing statistics can be
attributed to the fact that adolescents experiment
more with risky behaviors that result in health
consequences.
Still, in the United States, from 1991 to 2011,
adolescent smoking and alcohol consumption sig-
nificantly declined (Federal Interagency Forum on
Child and Family Statistics, 2012). And though the
use of illicit drugs increased substantially in the
mid-1990s, these rates likewise decreased during
the 2000s. Despite some historical fluctuations in
the rate of smoking over the last several decades,
by 2011 only 10% of high-school seniors reported
regular cigarette use (Federal Interagency Forum
on Child and Family Statistics, 2012). The risky
behaviors of smoking, alcohol use, and drug use are
all much more likely among white than among mi-
nority youths (Casper & Bianchi, 2002). African
Americans were the least likely to report engaging
in most of these behaviors. The rates of alcohol use
for Canadian adolescents remained relatively stable
during the 1990s, but decreased in the 2000s. Dur-
ing 2007–2008, the rates of alcohol use hovered
between 46% and 62% for both boys and girls ages
12 to 18, depending on the province (Drug &
Alcohol Use Statistics, 2012). Similar to the United
States, 12th-graders in Canada also exhibit the
highest rates of alcohol and drug use among ado-
lescents (Canadian Centre on Substance Abuse,
2011). Fewer Canadian adolescents smoke today
than was the case a decade ago. In 2011, slightly
more than 9% of adolescents ages 15 to 19 smoked
daily or occasionally compared with nearly 30% in
1994 (Human Resources and Social Development
Canada, 2013).
Researchers evaluating large data sets of repre-
sentative samples of young people over time, such
as the National Study of Adolescent Health, are be-
ginning to untangle the effects of peer influences,
family factors, school climate, and neighborhood
contexts on youth risk-taking behavior (Duncan,
Harris, & Boisjoly, 2001; National Center for
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Health Statistics, 2012). As this section reflects,
multiple, complex, and challenging factors con-
tribute to the nurse’s ability to evaluate risks and
behaviors that lead to health disparities. Families
comprised of members demonstrating one or more
of these risks or behaviors may present challenges
to the nurse developing a comprehensive plan of
care that meets all needs of all family members.
Nevertheless, it is critically important that each
family member be assessed and evaluated when cre-
ating a family plan of care.
SOCIAL POLICY
As discussed earlier, the U.S. Public Health Service
has set a target goal to eliminate health disparities
among the poor, minority groups, and genders.
The U.S. Department of Health and Human Serv-
ices Bureau of Primary Health Care has developed
the Health Disparities Collaborative as a mecha-
nism to change the delivery of care to populations
at risk and meet this goal (Gillis, 2004). The great-
est impact will be achieved through an upstream
approach of primary prevention and health promo-
tion (Falk-Rafael & Betker, 2012; Smith Battle,
2012). This section presents some current social
policy aimed at mitigating health disparities and
then explores several key areas in need of additional
social policy to minimize disparities.
Educational Policy
Education is a crucial social determinant of health
and illness disparities. Educated individuals are
more likely to follow health practice advice that
substantially reduces adult and children health risk
factors. Better-educated individuals are also more
likely to look for medical care when they get sick,
and thus they receive more health care (Cutler,
Deaton, & Lleras-Muney 2006). As a consequence,
a gradient in health disparities exists by educational
level. This section explores some of the educational
policies in place to minimize disparities and pro-
mote health.
Every child in the United States and Canada has
a right to an education, up through the completion
of high school. This social policy is one of the few
guarantees given to residents of the United States.
The majority of American and Canadian children
attend a school that is in the same community in
which they reside with their family. When a school
is community based, it can also serve as a commu-
nity center, providing after-school programs for
working parents and evening educational programs
to community members. Schools can support and
improve the lives of children and their families by
serving community needs. The school system also
functions as a social gatekeeper and may be held
accountable for enforcing many public health laws
and regulations, such as the requirement for vacci-
nation before children enter the system.
Nurses, social workers, and psychologists in
U.S. and Canadian schools are now well established
as integral providers of services for children and
families. Psychological testing and services, speech
and language therapy, occupational therapy, and
physical therapy are a legal right for all children as-
sessed as having special health care or learning
needs and are administered under such legislation
at Section 504 of the Americans with Disabilities
Act. In Canada, the provincial Ministry of Educa-
tion is responsible for administering the public
funds of children’s education (Canadian Encyclo-
pedia, 2012).
Nevertheless, educational equity is not always
easy to achieve, and educational inequity leads
ultimately to health disparities. For example, the
No Child Left Behind (NCLB) law was enacted in
2001 and was a reauthorization of the Elementary
and Secondary Education Act originally adopted in
1965. This educational plan has four pillars: ac-
countability, flexibility, proven methods, and
parental ability to transfer their children out of
low-performing schools after 2 years. On paper,
the NCLB does not appear to hinder the educa-
tional process, but there are many concerns about
this law. The title of the law is intentionally inclu-
sive and brings to mind equity in education, but
when put into practice, equity was elusive among
disabled students and students from ethnic and
racial minorities (Thompson & Barnes, 2007,
p. 12). The process of grading schools and requiring
continuous improvement in test scores as a condi-
tion of economic support may prove impossible to
manage. Some schools starting with high scores
may not be able to make substantial increases, and
other schools starting with very low scores may
make meaningful improvement without meeting
the stated standards. In Canada too, recent cutbacks
to education have resulted in curtailing some pro-
grams considered “frills,” such as sports and music.
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They have met with public outcries from parents,
often reversing the decision to cut back.
School Nursing
The National Association of School Nurses
(NASN) in the United States holds the position
that each school nurse plays an active role in assist-
ing children to optimize health, wellness, and
development as a foundation to achieve educational
success (NASN, 2003). This organization supports
the need for a nurse in every school and acknowl-
edges the role of the nurse that extends to family
nursing, often the only health care resource in a
community. As a resource, the school nurse should
function as a case manager with knowledge of avail-
able insurance programs, health care providers, and
community-based health-related services.
Traditionally, the school nurse has been respon-
sible for managing emergency situations, providing
mandatory screenings and immunization surveil-
lance, dispensing prescribed medications, and serv-
ing as a resource for health-related information
(American Academy of Pediatrics [AAP], 2001).
The role of the school nurse, as part of a compre-
hensive school-based health care team, has ex-
panded into many communities as a source of
health care for the uninsured. Many large cities
employ registered nurses and advanced practice
nurses who provide primary care services in school-
based clinics, not only because children lack a
source of care but because school-based care is
accessible and comfortable for young people.
The AAP (2001) describes the role of the school
nurse as one who provides care to children, includ-
ing acute, chronic, episodic, and emergency care.
The nurse is also responsible for the provision of
health education and health counseling, and serves
as the advocate for all students, including those
with disabilities. The school nurse should work in
collaboration with community-based doctors, or-
ganizations, and insurers to ensure that each child
has access to health care (AAP, 2001). This recom-
mendation is an exceptional expectation, especially
when many schools function without a full-time
nurse. Far too many schools have no nurse, only a
part-time nurse, or a nurse whose only role is to
ensure that children with special health care needs
receive their medications, catheter care, or other
prescribed services.
In Canada, where all permanent residents have
universal health coverage, most individuals and
families have a family physician and therefore better
access to health care. School nursing falls under the
purview of public health nurses who visit schools as
part of their roles determined by various provincial
government mandates. These nurses have an op-
portunity to connect with children and families and
mediate their needs and available resources and
practice health promotion. They play an important
role in primary health care with an emphasis on up-
stream approaches of health promotion and disease
prevention (Butterfield, 2002; Falk-Rafael &
Betker, 2012; Smith Battle, 2012). Recently, with a
push from governments to focus more strongly on
the “three Rs” (reading, writing, and arithmetic)
and increasing standardization and testing, time al-
lotted for public health nurses to service the indi-
vidual schools is being cut. School health today falls
under a consensus statement of many public agen-
cies, rather than nursing alone (Canadian Consen-
sus Statement on Comprehensive School Health,
2007). In Ontario, for example, if specific nursing
services are required today, the trend is to provide
services by nurses attached to a Community Care
Access Centre (CCAC), an agency that delivers
nursing care in the community in general. These
nurses are only looking after specific children with
specific health care needs, which range from phys-
ical problems to learning disabilities. Therefore, the
coordinated health promotion aspect of school
nursing is disappearing in Canada too.
The variability in the presence or expectations
of school nurses is a source of concern in the
United States. In some districts (and by law in some
states), every school has full-time nurses with both
knowledge and time to work with children and par-
ents to support or improve physical or mental
health. According to the NASN, schools that pro-
vide “adequate nursing coverage” have lower
dropout rates, higher test scores, and fewer ab-
sences, which translate into better health outcomes
for children and families. The U.S. government
recommends one nurse for every 750 students as
outlined in the Healthy People 2020 objectives, with
adjustment depending on community and student
needs (USDHHS, 2010). To date, only 45% of
public schools have a school nurse all day every day,
and an additional 30% have a nurse part-time in
one or multiple schools (NASN, 2010).
School nurses are in a unique position to pro-
vide many health-related services to school-age
children and their families. Unfortunately, in
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many communities in both the United States and
Canada, social policy and funding shortfalls are
constricting these resources. If given the appropri-
ate resources and backing, school nurses are well
positioned to promote and facilitate family health
and creatively bring needed services to schools
such as can be seen in the establishment of school-
based community health centers.
Housing and Poverty Reduction Policies
The Canadian Centre for Policy Alternatives
(CCPA, 2012) points to the lack of national policies
on housing and poverty reduction, creating an
urgent need for developing policies to mitigate in-
come disparities, by (a) increasing minimum wages
to a “living wage,” meaning a wage large enough
to live comfortably with a healthy lifestyle; (b) in-
creasing social support payments to allow for the
necessities of life; and (c) a fairer system of taxation
in which higher incomes are taxed progressively
more. The public good should come before the in-
dividual good in this vision based in principles of
social justice and dignity (CCPA, 2012). Nurses
should advocate for policies ensuring quality hous-
ing, including subsidized housing for low-income
families. Since Canada has no national housing
policy, creating one seems to be of utmost priority.
Policy Related to Chronic Illness
As discussed earlier in the chapter, chronic illness
is both a social determinant of health for families
and a creator of health disparities between families.
A number of chronic health-related policies have
been created that have the potential to reduce dis-
parities in this area. This section explores several
of these policies.
Asthma Policy
The objective of policy makers now is to create
“asthma-friendly communities.” These communi-
ties would offer better access to and quality of treat-
ment for all populations, but especially those in
poorer communities; increased awareness of asthma
and its risks; and environmentally safe schools and
homes (Lara et al., 2002). New York City, for ex-
ample, began an Asthma Initiative in 1999 that
includes an Asthma Institute, a comprehensive pro-
gram called Managing Asthma in Schools and
Daycare, a Community Integrated Pest Management
program, and an Asthma Care Coordinator pro-
gram that provides follow-up care and support to
children hospitalized for asthma. The Asthma In-
stitute provides free education to health care
providers, community educators, and homeless
shelter workers on asthma signs and symptoms,
asthma self-management, and other clinical topics
related to asthma. This initiative helped reduce hos-
pitalizations for asthma by 9% in 2005 (New York
City Department of Health and Mental Hygiene,
2008). No-smoking policies, legislation on emission
controls for industries and car exhausts, and cleaner
electricity generation initiatives also make a differ-
ence in terms of asthma health.
HIV/AIDS Policy
As discussed earlier, with the introduction of anti-
retroviral drugs in the 1990s, HIV has been treated
as a chronic illness, and people are living longer
with the infection. Therefore, an increased need for
nurses exists to offer prevention education and pro-
mote testing for all men and women. Moreover,
nurses should join the campaign to continue to
encourage the safer-sex practices that helped to re-
duce the rates of infection in the earlier days of the
illness. As stated earlier, with the successful intro-
duction of the antiretroviral drugs, safer-sex prac-
tices have been relaxed and rates of infection are no
longer decreasing. The CDC currently recom-
mends routine screening and testing for all adults,
adolescents, and pregnant women (CDC, 2006).
It is believed that when a person infected with
HIV is aware of his or her sero-status, he or she
can live a healthy and long life by adopting healthy
behaviors and using antiretroviral drugs. Knowing
HIV status also helps to reduce transmission
by practicing safer sex. Prevention education,
screening, and counseling are priorities for the
family nurse. Policies that prevent the spread of
AIDS would also include sex education in schools
and for the public at large.
Mental Illness Policy
As a first step, Canada is about to introduce its first
national mental health strategy (Mental Health
Strategy of Canada, 2012). The Housing First pro-
gram for individuals with mental illnesses who are
homeless, which gets them into supportive housing
without demanding that they first be treated, seems
to have made a big difference to this vulnerable
population, reducing the numbers of unhoused and
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sick individuals living on the street and in shelters
(Mental Health Strategy of Canada, 2012).
Aging Population Policy
Many chronic and debilitating illnesses in the
elderly are preventable or can be delayed. Early
adoption of a healthy lifestyle and prevention of
obesity decreases the prevalence of illnesses such as
diabetes, cardiovascular disease, pulmonary disease,
and physical disabilities. Hence, it is important to
create policies that promote health in an upstream
approach before illness sets in, making healthy
lifestyles affordable for all. This calls for policies to
mitigate the root causes, such as poverty, unhealthy
living conditions, food insecurity, lack of access to
early interventions when ill, and all other relevant
social determinants of health. For nurses it means,
once again, advocating for their clients and helping
them attain the necessary resources within the com-
plicated systems of health care and social support.
Health Promotion Policies
Health promotion generates health improvements
through multiple approaches of research, public ed-
ucation, changes in the physical and social environ-
ment, regulation of disease- and injury-promoting
activities or behaviors, and improved access to high-
quality health care through policies that mitigate dis-
parities and promote equity. For effective outcomes,
these policies must consider the social determinants
of health as the foundational concepts influencing
health (Marmot, 1993; Mikkonen & Raphael, 2010).
In 1990, at the urging of the Surgeon General of the
United States, the U.S. federal government pub-
lished a national agenda for health promotion, titled
Healthy People 2000, which identified 319 objectives
for health promotion and set measurable goals for
achieving them. Many of the objectives for the
decade dealt with health behaviors such as physical
activity and exercise; tobacco, alcohol, and drug use;
violent and abusive behaviors; safer sexual practices;
and behaviors designed to prevent or mitigate
injuries. These objectives were set as national goals
to be realized through a combination of public sec-
tor, private sector, community, and individual efforts
(see National Center for Health Statistics [2011]
for a complete list of objectives and an assessment
of progress toward their achievement). The out-
comes to date appear to be mixed, with considerable
success in some areas, including increases in moder-
ate physical activity; moderate improvements in
some others, including decreases in “binge drinking”
and increases in safer sexual practices; and little
progress in some other behavioral objectives, includ-
ing marijuana use and tobacco use during pregnancy
(National Center for Health Statistics, 2011). A
new set of objectives and measurable goals were
established in Healthy People 2010 and revised again
in Healthy People 2020. The relevant Healthy People
goals provide a standardized approach to assess
changes in behaviors that determine health out-
comes. Numerous tables in the statistical yearbooks
published by the National Center for Health Statis-
tics form a “scorecard” for this national health pro-
motion effort.
Ensuring access to health and illness care services
is one way to improve the health of individuals and
families. Using upstream approaches, children
should receive necessary immunizations and should
be evaluated on a regular basis for normal growth
and development. Likewise, it is important that
adults be adequately immunized and screened for
hypertension, diabetes, and cancer at appropriate
ages and intervals. The absence of a comprehensive
commitment to access or assurance of universal
health insurance coverage for all, until now, has
made achieving the desired level of interaction with
health professionals extremely difficult in the United
States (Bernstein, Gould, & Mishel, 2007). Commu-
nity health centers (CHCs), offering a wide range of
services, could hold possibilities for more coordi-
nated care in the United States, as well as in Canada.
Although much emphasis has been on the roles
parents have in ensuring that their children receive
needed services, many adults also have responsibil-
ities for the health care of aging parents. Adults
with both children and aging parents dependent for
support struggle with access to health care and
management of illnesses, and therefore experience
a particularly difficult burden in today’s world.
They are referred to as the sandwich generation
and are in danger of caregiver burnout (Drew,
2012). Adequate supports for families are needed
so they do not have to shoulder the burden of care
alone. Suggestions for promising approaches are
health coaches, particularly registered nurses
(RNs), who develop a trusting relationship with
their clients and act as advisors and resources for
the clients. The RN–Health Coach was recently
introduced in the United States with good results
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and is currently piloted in Canada as well (Change
Foundation, 2013).
Areas in Need of Additional Social
Policy to Avoid Growing Disparities
There are a number of areas in particular need
of additional social policy to help stem growing
disparities.
Elder Care
The Administration on Aging (USDHHS, 2012)
predicts that by 2020, 19.2% of the 15.2 million
persons older than 65 living alone will need help
with daily living. The provision of care to the eld-
erly is growing both as a family responsibility and
as a profession. More women are caregivers than
men. Policies such as the Family and Medical
Leave Act are written as gender neutral, but
women experience a general expectation that they
will be the caregivers regardless of the burden
that places on them. Lay caregivers are unpaid,
which benefits social programs, especially
Medicare and Medicaid. Home care in Canada is
also poorly funded and benefits enormously from
free labor by family members. Women who pro-
vide lay home health care experience much
greater levels of stress than their other family
members, as well as more alienation from those
outside of the home (Armstrong, 1996). Respite
care and increased home health nursing and other
supports are needed here to ease the burden
(Bookman, Harrington, Pass, & Reisner, 2007;
Change Foundation, 2013). Recently, some parts
of Canada introduced compassionate care bene-
fits, which apply when the death of a family mem-
ber is expected within the next 6 months. A
family caregiver can be granted up to 6 weeks
leave from work, during which time she receives
Employment Insurance benefits (Employment
Insurance Compassionate Care Benefits, 2013).
Day care for elders and increasing funding for
community-based care in the home would make
it easier for older people to stay out of costly in-
stitutional care and increase their quality of life.
This type of care needs to include house calls by
doctors, nurses, physical therapists, and other
health care professionals if clients are unable to
go to appointments. It also needs to focus on
home safety (Change Foundation, 2013). It could
go a long way toward reducing health disparities
imposed by chronic illness by providing access to
optimal care for vulnerable older persons.
Women’s Reproduction
Women’s reproduction is another area where social
policy could help stem health disparities. In 2006, for
example, the state of South Dakota banned access to
abortion services. This ban was seen as a direct chal-
lenge to federal precedent set in Roe v. Wade. In
South Dakota, it is now a felony for a health care
provider to perform an abortion unless there is proof
that the mother’s life is at risk. At the time of the ban,
only one provider of abortion services, Planned Par-
enthood, operated in the state. The clinic was reliant
on physicians who would fly in from other states be-
cause no local physician was willing to provide abor-
tions to women. As a result of this law, women do
not have access to abortions unless they have the re-
sources to leave the state for care. In Canada, in the
small province of Prince Edward Island, many doc-
tors have refused to perform abortions, which forces
women to seek them outside of the province, even
though it is a legalized procedure there.
On a similar note, some pharmacists across both
countries have refused to fill prescriptions for con-
traceptives, including emergency contraception,
stating that doing so is in direct conflict with their
moral and personal beliefs (Stein, 2005). Women,
who are often unaware of these reproductive health
issues until they are directly affected, are outraged
when pharmacists’ beliefs override their right to
services. Women have a legal right to access pre-
scription medications. The question is, whose rights
prevail? In Canada, religious-based health care in-
stitutions, as well as individuals, can also refuse
abortions and birth control counseling, although
women have the right to these services under the
Canadian Charter of Rights and Freedoms. Those
who are refusing to provide the services are legally
required to refer the women to another practitioner
who is willing to perform the service. In underser-
viced areas, this might mean traveling long dis-
tances, which not all women can afford.
In the United States, according to the
Guttmacher Institute (2005), 47 states have a
policy that allows health care providers, including
nurses and pharmacists, to refuse to participate in
the delivery of reproductive health services, which
could leave many women with no choice regard-
ing their reproductive health. Once again, gender,
socioeconomic position, and geography seem to
Family Social Policy and Health Disparities 155
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be determinants of health that disproportionately
disadvantage women by denying them access to
care. Both countries are in need of social policy to
help mitigate these disparities.
LGBT Health Disparities
Arguably one of the most significant areas of cur-
rent relevance to family health in North America
relates to families with nonheterosexual or gender-
conforming identities. Lesbian, gay, bisexual, and
transgendered (LGBT) families characterize a
growing number of households in the United States
(U.S. Census Bureau, 2011). Some estimates from
these data suggest that there has been as much as a
51.8% increase in the number of formal same-sex
households from the previous decade, though the
prevalence in the overall population is still quite
small at approximately 1% of U.S. households. The
majority of these households, approximately 81%,
do house children (U.S. Census Bureau, 2011).
This prevalence is significant because with the defi-
nition of family currently in flux, these couples
and parents face a number of challenges with
insurance access, financial benefits and death plan-
ning, decision-making abilities, and other key social
policy related family health challenges. In Canada,
where same-sex marriages are legalized, same-sex
marriages have all the rights, duties, and privileges
that come with being a married couple. Neverthe-
less, the stigma associated with homosexuality re-
mains in varying degrees, so the issues cited below
in both countries are similar.
According to data presented by the Healthy
People 2020 initiative, LGBT individuals face a
number of specific health disparities, such as stigma
and discrimination-related mental health disorders,
and increased rates of suicide and substance abuse
(USDHHS, 2013b). As a result of systemic and
policy-related stigma and barriers, these individuals
experience significant differences in health-seeking
and health-promoting behaviors: they are far more
likely to delay accessing health care; they are less
likely to receive preventive screens such as mam-
mograms; and they experience greater alcohol and
tobacco use, as well as physical violence, than their
heterosexual counterparts (Krehely, 2009). Fami-
lies with LGBT youth are particularly vulnerable
and experience significant family life challenges re-
lated to stigma and acceptance. As such, LGBT
adolescents experience much higher rates of home-
lessness, prostitution, and substance use, and they
are at increased risk of infectious diseases such as
HIV, hepatitis, and a host of sexually transmitted
infections (Ryan, Huebner, Diaz, & Sanchez, 2009).
Both the United States and Canada need additional
social policies to decrease these disparities.
To combat these individual and family health
problems, San Francisco State University com-
pleted a significant family-based intervention
project to assist families to develop skills and at-
tributes of acceptance, particularly among fami-
lies with high degrees of religiosity (Ryan, Russell,
Huebner, Diaz, & Sanchez, 2010). Their Family
Acceptance Project provides an entire evidence-
based family intervention plan and resources
available to the general public, along with links
to peer-reviewed research aimed to assist families,
that can be accessed at http://familyproject.sfsu.
edu. Efforts such as these, aimed at assisting fam-
ilies at the individual and community level, in
combination with systems of health research,
provide an important link between social policy
development and LGBT individual and family
health issues.
THE NURSE’S ROLE IN ADVOCACY
FOR SOCIAL POLICY
This section will look at the role of the nurse his-
torically and today in advocating for social policies
to promote the health of clients and families, par-
ticularly those who are disadvantaged. As holistic
care providers, nurses are in an excellent position
to inform the public, including politicians, about
what policies are needed and why, and to negotiate
for, and help clients and families obtain, the best
possible resources.
Historical Involvement in Social Policy
Historically, nurses have worked closely with vul-
nerable populations and developed unique solu-
tions to challenging health care problems. Many of
these interventions took place in the community
setting and focused on the family, not just the in-
dividual. The profession of nursing historically has
been involved in social issues and has worked tire-
lessly to advocate and provide a voice to many
vulnerable populations, starting with the Grey nuns
in the 18th century in Canada. The Grey nuns
were Catholic, religious sisters who established
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themselves in the city of Montreal. Their mission
was to care for the poor and destitute (Hardill,
2006). In England, in the mid-19th century, Flo-
rence Nightingale began to reform the Poor
Houses of London and stressed the importance of
the environment in health care (Hardill, 2006;
Monteiro, 1985). The Henry Street Settlement
(HSS) in New York City, founded by Lillian Wald,
likewise demonstrated nursing’s role as an advocate
for vulnerable populations. Founded in the late
19th century, the mission of the HSS was to pro-
vide “health teaching and hygiene to immigrant
women” (Henry Street Settlement, 2004). Today,
the HSS continues to function as a community cen-
ter for families in New York through its midwifery
and nurse practitioner program. Mary Breckin-
ridge established the Frontier Nursing Service
(FNS) in Hyden, Kentucky, in 1925. The FNS in-
troduced community-based midwifery care to the
women of Appalachia, a vulnerable population with
distinct health care needs. These nurses were serv-
ing the needs of women and vulnerable minority
populations who, at the time, had no human rights,
such as voting or owning property.
In the early 20th century, as nursing care moved
into the hospital setting, the role of the nurse
changed. Nurses lost their autonomous practice as
healers and became subordinated to physicians
(Ashley & Wolf, 1997). Care became increasingly
centered on the medical model and focused on cur-
ing the sick individual as opposed to caring for the
human response to illness in the context of the
physical and social environments. Assessing the in-
fluence of the determinants of health and evaluat-
ing their effects on the overall health of the
individual and family lost much of its importance,
as care delivery became focused on the individual’s
medical diagnosis.
Nursing Today
Today most front-line nurses in the United States
and Canada function primarily in the acute care
setting, a practice that breeds an inadequate per-
spective on the role of the social determinants of
health and an associated limitation in advocacy.
This limited involvement, however, will be forced
to change with the looming transformation of
health care through the Affordable Care Act in the
United States and talk on both sides of the border
to move care from institutions into the community.
In 2011, the IOM released a report outlining key
recommendations for preparing the nursing work-
force to meet the needs of the population: The
Future of Nursing: Leading Change, Advancing
Health. This landmark report describes the need
to harness the power of nurses to realize the ob-
jectives set forth in the Affordable Care Act by
transforming the health care system from one that
focuses on the provision of acute care services to
one that delivers health care where and when it is
needed, ensuring access to high-quality preventive
care in the community. The IOM committee ex-
plains that nurses will need to be full partners in
redesigning efforts, to be accountable for their
own contributions to delivering high-quality care,
and to work collaboratively with leaders from
other health professions by taking responsibility
for identifying problems, devising and implement-
ing solutions to those problems, and tracking im-
provements over time to ensure the health of the
population (IOM, 2011).
Numbering over 3 million in the United States
and just over 250,000 in Canada, RNs comprise
the largest segment of the U.S. and Canadian
health care workforce and must be active leaders
in improving the access to and quality of health
care. Advancing health care will require a cultural
shift in the expectations of the nursing profession
regarding education, practice, and advocacy for
vulnerable populations. In Canada, Pilkington,
et al. (2011) found that, even in community-based
health care centers, many nurses failed to take
into account the clients’ social and housing con-
ditions, as these concepts were not included in
the standard nursing assessment forms. The
allotted time spent with clients was mostly focused
on traditional health teaching about lifestyle
changes, despite the fact that these same nurses
indicated that assessment of access to necessary
resources was a critically important component
for success in meeting clients’ needs promoting
their health (Ministry of Community and Social
Services, 2012).
Although nurses today may have difficulty mak-
ing the link between clinical practice and social
policy, nursing leaders are pressing for greater
involvement in such efforts. On a professional
level, many nursing organizations advocate for vul-
nerable populations and attempt to solve health
disparity issues. In fact, in 1992 the American
Nurses Association moved the national office to
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Washington, DC, to increase visibility of the pro-
fession of nursing among U.S. legislators (Milstead,
1999). Similarly, the Canadian Nurses Association
(CNA) and provincial professional associations,
such as the Registered Nurses Association of On-
tario (RNAO) (2012), play an increasingly stronger
advisory role, advocating with the federal and
provincial governments regarding health policies.
Most nurses currently may not possess the
knowledge and skills to interact with policy makers,
an activity that must be learned if the needs of the
population are to be met. Although few studies
exist to describe this complex topic, undergraduate
students report limited knowledge of how to en-
gage in a dialogue with legislators or how the role
of the nurse relates to such activity (Schofield,
2007). Hewison (2007) acknowledges the lack of
policy involvement among nurses and concludes
that this may be related to the complexity of the
policy process. In Canada too there is very little
focus on policy in nursing education. This lack of
preparation in policy development is due in part to
the traditional focus of curriculum to be foremost
on the competencies necessary to obtain licensure.
Another reason contributing to this omission in
nursing education is the biomedical institutional
focus associated with nursing, even in community
settings. Advocacy work is mostly not recognized
as part of the nursing job description or scope of
responsibility (Pilkington et al., 2011).
Brewah (2009) recommends integrating advo-
cacy into nursing curricula and staff education.
Primomo (2007) studied the influence of an edu-
cational intervention on political awareness in a
group of graduate nursing students and found that
perceived competence among the students in-
creased after the intervention. Hewison (2007) de-
scribes an organized method for policy analysis to
be used by nurse managers. This method involves
a process by which a summary of the policy is de-
veloped, including its origin and status, a history
and link to other policy initiatives, and, finally,
themes and elements of nursing practice affected
by the policy. Once the analysis is concluded, the
nurse can take a position on whether this policy will
meet the needs of the constituency. Nurses with
strong policy analysis skills are critical to improving
health for all citizens and to closing the health
disparities gap.
Professional nurses with an interest in learning
more about their role in the policy arena can find
resources through professional associations or can
enroll in a health care policy course. One example
is the Washington Health Policy Institute con-
ducted by George Mason University in Arlington,
Virginia. Nurses and other health care professionals
spend 1 week learning about health and social pol-
icy, strategies to advocate for at-risk populations,
and how to influence policy makers. Similarly, in
Canada, the CNA and provincial associations such
as the RNAO also offer information, workshops,
and training for nurses to gain skill in health care
policy development. Social policies are a major
contributing factor to the mitigation of health dis-
parities. Nurses have the ability to influence policy
on many levels, but not all policies are focused on
interactions with governments.
Nursing Policy, Research,
and Education
Many important policies are at the institutional
level, where nurses work; nursing practice, research,
and education should reflect this orientation.
Nurses Influencing Social Policy
The implications of becoming involved in the in-
fluence of social policy as a context for nursing
care of families are limitless, especially in commu-
nity and institutional settings. Nurse involvement
in policy development can constitute a wide range
of activities, from a micro level, where nurses can
inform institutional policies in the workplace, to
a macro level, where nurses may petition govern-
ment representatives regarding development of
needed or modification of harmful policies.
Nurses can influence policy in small ways. Be-
ginning by using open-ended questions that do not
assume marital status, gender of partner, relation-
ships with children, and sources of financial sup-
port will yield a much more complete assessment.
Discharge planning for return to the community
should begin with an open exploration of potential
support and resources, without assuming that any
are automatically available. Here are some ways in
which nurses can get involved in influencing policy
from micro to macro levels:
■ Join committees in your institution to change
relevant policies (e.g., include questions
regarding available resources in assessment
forms; make sure needed resources are
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available before discharge; ensure follow-up
after discharge/referrals)
■ Join professional association and advocate for
needed social policies
■ Write to or phone elected representatives
regarding needed policies or changes to
those that are harmful
■ Join community advocacy groups, such as
those requesting affordable day care
■ Join boards of directors for agencies, such
as social housing, CHCs
Nursing Research
Nursing research has already developed useful tools
and frameworks for providing nursing care across
cultural barriers and under difficult circumstances.
The recent development of community-based par-
ticipatory research models (Minkler & Wallerstein,
2008) provides a methodology for studies more re-
spectful of the potentially diverse views of family in
a community. This approach requires the nurse
researcher to establish a relationship with the com-
munity in which the study is to occur before the de-
velopment of the research question. Sharing all
stages of the research process with the members of
the community, nurse scientists using this collabo-
rative approach to examining health disparities can
directly affect community improvement based on
the results of the study. Adopting this level of respect
for reshaping nursing studies of “family” helps
nurses gain a more complete understanding of
health care for all types of families. This approach is
particularly important as trends in care move away
from acute care institutions toward community-
based care delivery provided by CHCs and home
care delivery in both the United States and Canada.
Nurses will be particularly well positioned to partic-
ipate in policy changes and program development in
collaboration with an interdisciplinary team, includ-
ing their clients and families, providing comprehen-
sive health care where and when the community
needs it (Hankivsky & Christoffersen, 2008).
Nursing Education
As discussed earlier, there is currently very little
inclusion of policy development and advocacy work
in nursing curricula. Opportunities for learning
experiences in settings that have established serv-
ices for vulnerable populations provide the nursing
student with clinical situations in which to practice
assumption-free assessment skills and learn about
diverse life situations and needs. Homeless shelters,
services for gay and lesbian adolescents, shelters for
victims of intimate partner abuse, outreach centers
for sex workers, and street syringe and needle ex-
change programs all reach a disproportionate share
of individuals whose family experiences are not the
idealized norm (Hunt, 2007). Working in coalition
with clients and other health care providers, nurses
can ensure the maximum beneficial influence of
such policies on the needs of families, communities,
and society (Bergan & While, 2012; Brewah, 2009).
The inclusion of health policy in nursing educa-
tion has the potential to increase the sensitivity of
nurses to social and health policy issues. Policy in-
volvement is about empowering others through
leadership, not exerting power over others (Brewah,
2009). Nurses must understand that it is not suffi-
cient to provide care in isolation from the forces that
increase risk for disease or limit access to medical
services. Electives in history, economics, and politi-
cal science inform nurses’ understanding of policy.
The IOM recommends that nurses engage in life-
long learning, thereby speaking to the need for
nurses to engage in professional practice that strives
to stay current on the state of the science in health
care and the influences of public policy on the de-
livery of that health care (IOM, 2011). Nurses, at all
levels, must be able to understand current affairs,
join nursing and other advocacy organizations, and
participate in local, state/provincial, or national po-
litical processes. Nurses should be educated to take
on responsibility of advocating for equity and social
justice to help develop family-friendly policies.
SUMMARY
This chapter has focused on health disparities and
how they can be mitigated by social policies. As
nursing care shifts from institutions into the com-
munity, nurses wanting to deliver the most effective
care need to return to historical role models in nurs-
ing. They need to become knowledgeable about the
influence of the political social structures that are
facilitating or hindering health promotion and par-
ticularly affect those families who are vulnerable.
Promoting health and mitigating disparities, nurses
have to be aware of and keep in mind the following:
■ Health disparities arise from complex, deeply
rooted social issues.
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■ Health disparities are directly related to
the social and political structure of a society,
which gives rise to the determinants of
health.
■ The social determinants of health include
poverty, housing, education, employment
and food security, accessibility to health
care, presence of chronic illness, gender,
and being of an ethnic, racial, or sexual
minority.
■ All these social determinants of health
intersect and mutually reinforce each other.
■ The social determinants are the root causes
of illness and health, as they affect lifestyle
possibilities and limitations and access to
health care resources.
■ The policy decisions made by a society or
government about families and what consti-
tutes a legal relationship, and how health
care is delivered, have a profound effect on
families and their health.
■ In the past, the profession of nursing had a
well-defined role in advocating for vulnera-
ble populations. In the last century, nursing
involvement in the development of health
policy has declined, due to a focus on medical
diagnosis rather than whole individuals and
families in their environmental and social
contexts.
■ Nurses today need again to get involved
in policy development at institutional and
societal levels to promote health and
well-being for families.
■ Nursing professionals can benefit from theo-
retical and practical education about social
policy issues that are broad and complex, but
result in resounding effects on the health of a
family.
■ Family nursing practice has the potential to
improve the health of all families, regardless
of definition and composition, by closely col-
laborating with clients and interdisciplinary
health care teams.
■ Nursing education needs to include teaching
policy development and advocacy.
■ Nursing research should include collabora-
tive, community-based participatory research
with families for best meeting their needs, as
they are the experts of their own lives.
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U N I T
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Relational Nursing and Family
Nursing in Canada
c h a p t e r 6
Colleen Varcoe, PhD, RN
Gweneth Hartrick Doane, PhD, RN
C r i t i c a l C o n c e p t s
■ Relational inquiry rests in a socio-environmental understanding of health and health promotion (World Health Organi-
zation, 1986). A socio-environmental understanding of health incorporates sociological and environmental aspects, as
well as medical and lifestyle choices. Thus, a person’s/family’s capacity to define, analyze, and act on concerns in
one’s life and living conditions joins treatment and prevention as an essential goal of family nursing practice.
■ Families, health, and family nursing are understood to be shaped by the historical, geographical, economic, political,
and social diversity of the particular person’s/family’s context. By purposefully working with this diversity when provid-
ing care, nurses are prepared to take into account the contextual nature of people’s/families’ health and illness expe-
riences, and how their lives are shaped by their intrapersonal, interpersonal, and contextual circumstances to provide
more appropriate care.
■ “Context” is not something outside or separate from people; rather, contextual elements (e.g., socioeconomic
circumstances, family and cultural histories) are literally embodied in people and within their actions and responses
to particular situations.
■ Similar to other Western countries, Canada is prosperous, but has a significant and growing gap between rich and
poor, along with a biomedical- and corporate-oriented health care system. These influences shape Canadians’ health,
experiences of family, and experiences of health care and nursing care. By understanding how these economic and
political influences shape family experiences and nursing situations, nurses can promote health more effectively.
■ Dominant expectations and discourses about families in Canada are similar to other Western countries. These expec-
tations and discourses shape Canadians’ health, their experiences of family, and their experiences of health care and
nursing care. By examining how families and nurses themselves draw on these expectations and discourses, nurses
can improve their responsiveness to families.
■ Multiculturalism is part of Canada’s national identity and is enshrined in Canadian state policy. Multiculturalism is
understood in Canada to promote equality and tolerance for diversity, especially as it relates to linguistic, ethnic, and
religious diversity. Tensions exist between this understanding and the lived experiences of families, however, particu-
larly those who are racialized, do not have French or English as their first language, and are from nondominant
religions. Racialization refers to the social process by which people are labeled according to particular physical
(continued)
3921_Ch06_165-186 05/06/14 10:59 AM Page 167
Relational inquiry, the process of understanding
and assessing the importance of relationships in
order to support optimal health, is a valuable ap-
proach to family nursing. This approach rests in a
socio-environmental understanding of health and
health promotion (World Health Organization,
1986). This understanding of health incorporates
sociological and environmental aspects, as well as
medical and lifestyle (behavioral) ones. From this
perspective, health is considered to be “a resource
for living . . . a positive concept . . . the extent to
which an individual or group is able to realize as-
pirations, to satisfy needs, and to change or cope
with the environment” (World Health Organiza-
tion, 1986, p. 1). Subsequently, promoting health
and the capacity of people/families to define, ana-
lyze, and act on their concerns is the central goal
of family nursing practice.
Relational inquiry family nursing practice is
oriented toward enhancing the capacity and
power of people/families to live a meaningful life
(meaningful from their own perspective). Although
this may involve treating and preventing disease
or modifying lifestyle factors, the primary focus
is to enhance peoples’ well-being, as well as their
capacity and resources for meaningful life expe-
riences. Thus, relational inquiry focuses very
specifically on how health is a socio-relational expe-
rience that is strongly shaped by contextual
factors.
Understanding and working directly with context
provides a key resource and strategy for responsive,
health-promoting family nursing practice. Having
an appreciation for the range of diverse experiences
and how the dynamics of geography, history, poli-
tics, and economics shape those experiences allows
nurses to provide more effective care to particular
families, better understand the stresses and chal-
lenges families face, and better support families to
draw on their own capacities. Developing such an
appreciation requires that nurses consider how the
varied circumstances of their own lives shape their
understanding.
Grounded in a relational inquiry approach, this
chapter focuses on the significance of context in
family nursing practice. Specifically, we highlight
the interface of socio-political, historical, geo-
graphical, and economic elements in shaping the
health and illness experiences of families in
Canada and the implications for family nursing
practice. This chapter begins by discussing why
consideration of context is integral to family nurs-
ing. The chapter then covers some of the key
characteristics of Canadian society, and how those
characteristics shape health, families, health care,
and family nursing. Finally, informed by a rela-
tional inquiry approach to family nursing, the
chapter turns to the ways nurses might practice
more responsively and effectively based on this
understanding.
168 Families Across the Health Continuum
C r i t i c a l C o n c e p t s ( c o n t . )
characteristics or arbitrary ethnic or racial categories, and then dealt with in accordance with beliefs related to those
labels (Henry, Tator, & Mattis, 2009). Nurses who understand these tensions and how they shape families and
experiences are better prepared to provide responsive nursing care.
■ As a colonial country, Canada has an evolving history of oppressive and genocidal practices against Canada’s indige-
nous people, and an evolving history of varied immigration practices. Understanding how migration and colonization
affect both indigenous and newcomer families, and the health and lives of people within those families, is funda-
mental to providing effective family nursing care.
■ Competent, safe, and ethical family nursing involves taking the intrapersonal, interpersonal, and contextual aspects
of families’ lives into account. Nurses also need to consider how their own contexts shape their understandings and
responses to particular families and situations. Together, these actions enable nurses to tailor their understanding
and care to the specific circumstances of families’ lives and mitigate the possibility of making erroneous assumptions
about the families they serve.
■ Without a careful consideration of context and its influence on families’ health and illness experiences, nurses typically
draw uncritically on stereotypes in ways that limit possibilities for families they serve. By inquiring into the context of
families’ and nurses’ own lives, nurses are able to provide responsive, ethical, and appropriate care.
3921_Ch06_165-186 05/06/14 10:59 AM Page 168
CONTEXT IS INTEGRAL TO FAMILY
NURSING
Whereas “context” is often conceptualized as a
sort of container of people, something that sur-
rounds people but is somewhat distinct and sepa-
rate from people, this chapter encourages readers
to think of context as something that is integral to
the lives of people, as something that shapes not
only people’s external circumstances and opportu-
nities but their physiology at the cellular level. In
other words, context is embodied. For example, if
a person is born into a middle-class, English-
speaking, Euro-Canadian family, the very way that
person speaks—accent, intonation, vocabulary—is
shaped by that context. The way that person’s
body grows is influenced by the nutritional value
of the food and quality of water available, the level
of stress in the family, the quality of housing the
family has, the opportunities for rest and physical
activity. Similarly, the person’s sense of self and
expectations for her life are shaped by the circum-
stances into which the person is born. The indi-
vidual’s success in education will depend not only
on what educational opportunities are available,
but on how the person comes to that education—
for example, how well fed or hungry, well rested
or tired, or confident and content he is—and the
economic resources available that shape which
school the person attends. It will also be affected
by how education is valued within the person’s
family or community. Thus, a person’s/family’s
multiple contexts cannot be “left” or understood
as being outside or separate from one’s self or
necessarily under one’s control. Rather, people/
families embody their circumstances, and their cir-
cumstances embody them. Although they have
some influence over their circumstances, such in-
fluence generally is more limited than we would
like to imagine. Moreover, the contextual ele-
ments, and the experiences to which those ele-
ments give rise, live on in people. That is, past
contexts go forward within people, shaping how
they experience present and future situations.
People are both influenced by their context and
live within contexts. Throughout nursing careers,
nurses provide care in specific contexts, and fami-
lies will live in their own diverse contexts. Con-
sciously considering the interface of these differing
contexts and how they are shaping families’ health
and illness experiences is vital to providing respon-
sive, health-promoting care. Also foundational to
this process is the need to inquire into how “con-
text” is shaping your own life and practice as a
nurse. This enables you to choose more intention-
ally how to draw on those influences to enhance
your responsiveness to families. For example, many
nurses practice in health care settings, surrounded
by well-educated and financially stable profession-
als. This context contrasts with many clients, who
may lack education and live in low-income and un-
stable housing due to financial instability. When a
nurse recognizes this difference, care includes sen-
sitivity to the disparity between these two contexts.
CANADA IN CONTEXT
Canada is diverse in multiple ways. This section
considers five key areas of diversity that are signifi-
cant to families and family nursing: geographical,
economic, ethnocultural, linguistic, and religious
diversity. These contextual elements overlap and
intersect, shaping health, experiences of family, and
experiences of health care and nursing.
Geographical Diversity
Canada’s varied geography, encompassing differ-
ing terrains and climates, and ranging from dense
urban settings to sparsely populated remote rural
areas, shapes Canadian life. Across the prairies,
the various coastal regions, the remote areas of the
north, and the different mountain ranges are var-
ied resources and climatic conditions that shape
the lives of Canadians in differing ways. The pop-
ulation of Canada is concentrated primarily in
urban centers in the south. In 2011, Statistics
Canada reported that less than 20% of Canadians
(about 6.5 million people) were living in rural
areas (areas located outside urban centers and that
have a population of 10,000 or more people). A
continuing trend exists toward urbanization as
more people move from less to more urban set-
tings. In 2011, more than 27 million Canadians
(81%) lived in urban areas, a reversal from over a
century ago. The three largest urban areas in
Canada—Toronto, Vancouver, and Montréal—
made up just over one-third (35%) of Canada’s
entire population in 2011 (Human Resources and
Social Development Canada, 2012).
Relational Nursing and Family Nursing in Canada 169
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Geographical differences influence other as-
pects of life. For example, incomes in rural settings
are lower than in urban settings (Canadian Popu-
lation Health Initiative, 2006), and health indica-
tors are generally poorer in rural settings. In 2001,
a lower proportion of Canadians living in small
towns, rural regions, and northern regions rated
their health as “excellent” compared with the
national average and had a greater prevalence of
being overweight and smoking (Mitura & Bollman,
2003; Williams & Kulig, 2012). People living in
northern regions had greater unmet health care
needs compared with the national average,
whereas people in major urban regions had lower
unmet health care needs. Life expectancy is lower
and mortality rates are greater, particularly from
diabetes, injuries, suicide, and respiratory disease,
in rural settings compared with urban settings
(Canadian Population Health Initiative, 2006;
Williams & Kulig, 2012).
Geographical diversity shapes health through
multiple pathways, including different access to
food, housing, and other health resources; the
kinds of employment available; environmental con-
ditions and hazards; and social patterns. The health
disparities across geographical areas continue to be
a challenge to the quality of nursing care. Rural
areas of Canada, in particular, lack sufficient num-
bers of nurses to meet the complex needs of rural
and poor clients (Williams & Kulig, 2012). Family
nursing is challenged by the distance between
clients, the difficulty clients have in reaching health
care centers, and the lack of resources needed to
provide quality care. Nurses are often faced with
having to provide care in a shortened amount of
time with fewer resources. Yet, if nurses recognize
these challenges, they can work on a micro level to
incorporate relational inquiry into even the briefest
contact, asking family members how they support
healthy living patterns, and at a macro level by
being advocates for improved rural health.
Economic Diversity
Although Canada is a wealthy, developed nation, a
large and steadily widening income gap exists be-
tween rich and poor (Conference Board of Canada,
2012; Statistics Canada, 2006), with many Canadi-
ans living in poverty. Statistics Canada estimated
that in 2009, nearly 3.2 million Canadians, or 9.6%
of the population, lived in low-income families
(Statistics Canada, 2011b). About 634,000 children
age 17 or under, or 9.5%, lived in low-income fam-
ilies in 2009. About 196,000 of these children, or
31%, lived in a lone-parent family headed by a
woman. Roughly 22% of children living with a sin-
gle mother were in low-income households in
2009. Among 29 of the “richest countries” in the
world, Canada’s child poverty rate is about midway
between those with the lowest child poverty rates
(less than 5% in the Netherlands) and those with
the highest, with over 15% in Greece, the United
States, Lithuania, Latvia, and Romania (UNICEF
Office of Research, 2013).
The economic prosperity of Canada is dispro-
portionately distributed, and the inequities be-
tween those who are wealthy and those who are
poor, and between those who are healthy and those
who are not, continue to grow (Coburn, 2010). For
example, a study analyzing the Canadian Commu-
nity Health Survey found that, compared with
white people, minorities were more likely to earn
less than $30,000 Canadian per year (Quan et al.,
2006). A study of Aboriginal people in urban set-
tings found that approximately 30% of Aboriginal
households are headed by a lone parent compared
with 13.4% for non-Aboriginal households in the
same communities (Canada Mortgage and Hous-
ing Corporation, 2006). More than 50% of urban
Aboriginal children in the Prairie and Territories
Regions live in single-parent households versus
17% to 19% for non-Aboriginal children. Of those
Aboriginal single-headed households, 43% lived
in poverty compared with 28% of non-Aboriginal
single-headed households (Collin & Jensen, 2009).
This information is critical because income is a key
determinant of health, affecting multiple dimen-
sions of well-being. People who are racialized, are
new immigrants, live in rural settings, and have dis-
abilities are more likely to be poor, and are there-
fore more affected by the health consequences of
poverty. For example, the 2011 Child Poverty Report
Card (First Call, 2011) reports that despite an over-
all national “child poverty” rate of about 9.5%, par-
ticular groups are at greater risk for poor health
outcomes, including children of recent immigrants
(42%), Aboriginal children (36%), children of lone
female parents (33%), and children with disabilities
(27%). The reported measured poor outcomes, in-
cluding health, education, and long-term employ-
ment achievement. A review of these outcomes
from the Canadian Child Welfare Research Portal
170 Families Across the Health Continuum
3921_Ch06_165-186 05/06/14 10:59 AM Page 170
(Boer, Rothwell, & Lee, 2013) indicated that those
individuals in poverty, especially during the first
3 years of life, had lower developmental skills, had
poorer reading skills during school age, and were
more likely to be unemployed or underemployed
as adults.
Ethnocultural Diversity
Canada is one of the most ethnically diverse coun-
tries in the world, and the ethnic diversity of the
Canadian population is increasing (Statistics
Canada, 2009). More than 200 different ethnic
origins were reported in the 2006 Canadian Cen-
sus (Human Resource and Development Canada,
2012). In 2006, nearly 2 million people, or 6.3%
of the total population, were immigrants who had
arrived during the previous 10 years. In 2006,
there were 1,172,785 Aboriginal people in
Canada, comprising 3.8% of the Canadian popu-
lation. Of the three Aboriginal groups, First Na-
tions people (698,025) had the largest population,
followed by Métis (389,780), and Inuit people
(50,480).
(58.3%), whereas only 16.1% of immigrants came
from European countries (Human Resource and
Development Canada, 2012).
Although Canada has official state policy that
advocates equality and promotes tolerance
through multiculturalism, many argue that the
rhetoric of multiculturalism masks inequities and
discrimination based on ethnicity and racism
(Thobani, 2007). The Ethnicity Diversity Survey
(Statistics Canada, 2003a) found that 2.2 million
people, or 10%, reported that they felt uncom-
fortable or out of place sometimes, most of the
time, or all of the time because of their ethnocul-
tural characteristics. Those people who were
identified as “visible minorities” were most likely
to feel out of place. Recently a large study found
that many newcomer children and youth feel mis-
treated and isolated by both peers and teachers
(Oxman-Martinez et al., 2012). Henry et al.
(2009) argue that in Canada a form of racism is
practiced wherein policies and rhetoric simulta-
neously promote equity and justice and tolerate
widespread discrimination.
Racism has significant health effects (Harris et al.,
2006). Discrimination based on race has been
linked with health outcomes such as hypertension
and other chronic diseases (Krieger, Chen, Coull,
& Selby, 2005), mental health problems such as
depression and suicide (Borrell, Kiefe, Williams,
Diez-Roux, & Gordon-Larsen, 2006; McGill,
2008), and low birth weight (Mustillo et al., 2004).
For example, Veenstra’s (2009) analysis of the
Canadian Community Health Survey found signif-
icant relative risks for poor health for people iden-
tifying as Aboriginal, Aboriginal/White, Black,
Chinese, or South Asian that were not explained
by socioeconomic status, gender, age, immigrant
status, or location, suggesting that experiences with
institutional and everyday racism and discrimina-
tion play an important role.
Changing immigration patterns and increasing
ethnic diversity coupled with discriminatory poli-
cies and attitudes influence families’ experiences
and health. Migration processes are stressful, and
this stress is intensified when combined with lan-
guage barriers and downward economic mobility
(Papademetriou, Somerville, & Sumption, 2009).
These factors, combined with a gap between health
care providers’ lack of understanding of cultural
differences and clients’ lack of understanding of
cultural health practices in Canada, add to the risks
Relational Nursing and Family Nursing in Canada 171
Approximately 250,000 people immigrate to
Canada annually. Of the more than 13.4 million
immigrants who came to Canada during the 20th
century, the largest number arrived during the
1990s. The 2006 census showed that one in five
(19.8% of the total population) Canadians were
foreign born, the highest proportion since the
1930s (Statistics Canada, 2009). The origins of im-
migrants to Canada have changed in recent
decades, with increasing numbers coming from
non-European countries. Between 2001 and 2006,
the majority of immigrants arrived from Asia
3921_Ch06_165-186 05/06/14 10:59 AM Page 171
for poor health care. Nurses are key in minimizing
these risks by continually striving to assess and un-
derstand cultural differences and assisting families in
understanding Canadian health care practices.
Nurses can also be advocates for families by assisting
family members in protecting important cultural
practices in an unfamiliar health care setting.
Linguistic Diversity
Consistent with its history as a colonial nation and
destination for immigrants from around the globe,
Canada is linguistically diverse. The 2011 Census
recorded more than 60 Aboriginal languages,
grouped into 12 distinct language families, and
more than 213,000 people reported an Aboriginal
mother tongue. Most Canadians speak one or both
of the official languages: French and English. Yet,
in 2011, about one of every five people reported
having a mother tongue other than English or
French (Statistics Canada, 2012). Of these, one-
third reported that the only language they spoke at
home was a language other than English or French,
that is, a nonofficial language. Over the past few
decades, language groups from Asia and the Middle
East increased in number, and Chinese is now the
third largest language group after English and
French.
Language affects health in many ways. First, be-
cause language is connected to identity, language
loss is related to the loss of cultural identity expe-
rienced in an ongoing manner by Aboriginal peo-
ples and immigrants to Canada. When individuals
and families lose their cultural identity, they are at
risk of increased isolation and depression. This out-
come threatens not only their desire and ability to
seek health care, but also increases their risk for
secondary poor mental health outcomes. Second,
language barriers profoundly affect access to re-
sources, including employment, social, and health
resources. Finally, language barriers can be direct
barriers when receiving health care and communi-
cating with health care providers.
Some people who speak the dominant languages
of Canada presume that everyone should learn
French or English, without considering the re-
sources it requires to do so and the barriers (such
as poverty, transportation, discrimination, ability)
to doing so. Very limited supports are available for
language acquisition, and in the case of immigrant
families, the priority for who accesses language
classes is often the person who is most likely to be
able to obtain employment. This pattern leads to
higher health risks for those unemployed and with-
out the ability to speak the dominant languages,
including single parents, disabled adults, and chil-
dren. Nurses can be advocates for these family
members by assisting families with the use of inter-
preters, connecting families to community re-
sources that teach languages, and using visual
pictures and icons to explain health care procedures
rather than just verbal instructions.
Religious Diversity
Canada is also a country of considerable religious
diversity. Although Canada is predominantly
Christian, with 7 of every 10 Canadians identifying
themselves as either Roman Catholic or Protestant
in 2003 (Statistics Canada, 2003b), this pattern is
changing. Over the past decades, fewer people have
identified as Protestant and more have identified
with religions such as Islam, Hinduism, Sikhism,
and Buddhism, and more have reported no reli-
gion, with 35% in 2010 saying they do not affiliate
with any religion (Statistics Canada, 2011d). These
shifts are the result of changing sources of immi-
grants, and the decline in major Protestant denom-
inations since the 1930s, as their members age and
fewer young people identify with these denomina-
tions. Despite this changing profile, Christianity
continues to dominate many Canadian public in-
stitutions, including health care.
Religious affiliation affects health and nursing
practice in multiple ways, including fostering so-
cial inclusion and community support, and, de-
pending on the religion, serving as a basis for
discrimination and negative effects on health
practices, access to care, and acceptance of care.
Despite Canada’s professed tolerance for diver-
sity, acts of anti-Semitism and discrimination
against other non-Christian religious groups are
not uncommon, including escalating discrimina-
tion against Muslims and presumed Muslims
since 2001 (Mojab & El-Kassem, 2008). This
discrimination is brought on in part by the dra-
matic increase in immigration to Canada from a
variety of individuals from diverse religious back-
grounds. Canada now leads the world in accept-
ing immigrants, with 20.6% of Canadians now
foreign born, with the next country accepting
immigrants being Germany, at 13% of the
172 Families Across the Health Continuum
3921_Ch06_165-186 05/06/14 10:59 AM Page 172
population being foreign born. This acceptance
of immigration brings religious diversity and a
weakening of the majority culture, including re-
ligious affiliation. The largest share of immi-
grants to Canada (57%) came from Asia and the
Middle East, and these immigrants are predomi-
nately Buddhist, Muslim, and Hindu in religious
affiliation. At the same time, many Canadians are
claiming no religious affiliation, with as many as
24% of Canadians claiming no connection to
religious groups, up from 15% a decade earlier.
Still, 64% of Canadians affiliate with Christian
religious groups, with the largest group (39%)
being Catholics (Welcome/Bienvenue, 2011).
This increase in religious diversity means that in
order to offer culturally appropriate nursing care,
family nurses need to be familiar with major values
and beliefs of each religious group. For example,
families within certain religious groups participate
regularly in individual and group prayer as part of
the healing process (e.g., Catholics), whereas fam-
ilies without a religious affiliation do not generally
participate in religious prayer. Family nurses can
provide appropriate care by asking about religious
affiliations and how the families’ religious beliefs
affect their values and beliefs about healing. Nurses
should also seek families’ expectations of how
health care professionals can incorporate religious
beliefs into their treatment plan when appropriate
and possible. Nurses must also be knowledgeable
about not insulting religious beliefs unknowingly.
For example, males in the Muslim religion gener-
ally do not tolerate being naked in front of females.
It may be necessary to ask a male nurse to provide
care to a male patient. Likewise, females of the
Muslim religion are not allowed to be cared for
by male nurses. This religious value should be re-
spected whenever possible. If it is not possible, then
for females, the husband should be present. Having
a Muslim provider is ideal and should be sought
when possible to provide optimal and ethical care.
This holds true for all major religious groups
(Chicago Healthcare Council, 1999).
HOW FAMILY IS UNDERSTOOD
IN CANADA
Given this incredible geographical, economic, eth-
nocultural, and religious diversity, what constitutes
“family” in Canada, and how family is lived and
experienced, varies greatly. Despite this diversity,
age-old assumptions about family continue to dom-
inate. These ideas shape our expectations about fam-
ilies, such that families are “normally” nuclear and
comprise a mother, father, and two children. They
shape policies, such as the idea that people receiving
social assistance should turn to extended family and
“exhaust” family resources before accepting social
assistance. And they also shape health care providers’
expectations and practices, such as in the belief that
families should provide care to elderly members. Ex-
ploring and critically scrutinizing these dominant
ideas in light of the diverse contextual elements that
shape any particular family assists nurses to under-
stand their own and families’ expectations, the dif-
ferences between those expectations, and tensions
that might arise among different stakeholders.
Three general assumptions/expectations about
family are especially useful for nurses to explore in
order to understand families in Canada and similar
industrialized Western countries. First, families are
generally assumed to be “nuclear,” that is, to con-
sist of two generations, including parents (generally
assumed to be heterosexual) and children. Second,
women generally are expected to do the majority
of parenting and caregiving. Third, family is gen-
erally held to be a safe and nurturing experience.
In reality, however, people’s experiences vary
greatly and differ from these assumptions.
Heterosexual Nuclear Family
as the Norm
The idea that the heterosexual nuclear family is the
norm is belied by statistics; for example, in 2006,
16.5% of families with children in Canada’s met-
ropolitan areas and 13.3% of families in rural areas
and small towns were lone-parent families. The
rate of lone-parent families increased by 8% by
2011, with 1,527,000 children being raised by lone
parents (Statistics Canada, 2011a). Statistics Canada
notes that throughout the 20th century and into
the 21st century, the proportion of large house-
holds has decreased with each successive census,
and there has been a steadily increasing trend to-
ward smaller households. The 2006 census found
that there were more than three times as many one-
person households as households with five or more
persons. Of the 12,437,500 private households,
26.8% were one-person households, whereas 8.7%
were households of five or more persons. In 2006,
Relational Nursing and Family Nursing in Canada 173
3921_Ch06_165-186 05/06/14 10:59 AM Page 173
women living in a same-sex union represented
0.6% of all women in couples in Canada (or
41,200), and the 49,500 men living in a same-sex
union accounted for 0.7% of all men in couples. In
2006, 16% of women in same-sex couples had chil-
dren age 24 and under present in the home, repre-
senting a smaller share than for women in
opposite-sex unions (49%) but a much higher per-
centage than for men in same-sex couples (2.9%)
(Statistics Canada, 2011a).
Although some people construe living in house-
holds with larger numbers of people as a “cultural”
preference, doing so often increases financial strain.
For example, the Longitudinal Survey of Immi-
grants to Canada (LSIC) (Statistics Canada, 2005)
notes that, although the average size of a Canadian
household was 2.6 persons, the average household
size for LSIC immigrants was 3.4 persons, ranging
from 3.1 for skilled worker immigrants to 4.0 per-
sons for refugees. Most LSIC immigrants reported
living in two- (21%), three- (24%), or four-person
(22%) households, and were more likely to report
living in a household of six or more people (12%)
as compared with the Canadian average (3%). Abo-
riginal households were somewhat more crowded
than the general population, with an average of
2.9 occupants and 2.6 bedrooms, compared with
2.5 and 2.8, respectively, for non-Aboriginal house-
holds.
It is important for nurses to understand the eco-
nomic and social influences that shape housing for
families. For example, the number of lone mothers
heading families is, in part, a reflection of the
prevalence of violence against women and the so-
cial expectation for women to “leave” abusive part-
ners. The largest population-based survey focused
on violence in Canada revealed that 50.7% of
women reported physical assault from a former
partner, and that violence is a significant factor in
many separations and divorces (Varcoe et al.,
2011). If society could decrease violence in the
homes, the number of lone-parent families, partic-
ularly those run by women and at higher risk for
poverty, would in turn decrease.
Canada continued to study other family struc-
tures in the 2011 census, including same-sex par-
ents, common-law parents, stepfamilies, children
living with grandparents, children living in foster
homes, and young adults (ages 20 to 29 years) still
living in a parental home. Although traditional
nuclear families with opposite-sex parents remain
the majority, at two-thirds of all family structures,
other structures are growing. Common-law par-
ents account for 16.3% of families, and 10% of
children under 14 years of age live in stepfamilies.
A growing number of children are living with
their grandparent(s), with 4.8% of children under
14 years of age living with one or more grandpar-
ents, and 0.5% of those children do not have a
biological parent in the home. Foster children
make up another 0.5% of the children living in
families, and 0.8% of children are living with
same-sex parents. Finally, the age for independ-
ence is increasing, similar to other Westernized
countries. Forty-two percent of young adults
20 to 29 years of age are still living or have re-
turned to living in a parental home. This trend is
more true for males than females.
These trends have important implications for
nursing care. For example, family nurses can no
longer expect children to have two opposite-sex
parents in their home. Family nurses need to assess
the current family structure and avoid assumptions
or biases regarding expected norms. Each family
structure has benefits and risks, and family nurses
need to both assess these within individual families,
and educate families about changing structures and
how those changes influence child development.
Nurses also need to be familiar with, and connect
families to, appropriate support services to help
families do the best they can for their children re-
gardless of the family structure. For example,
although grandparents raising grandchildren poses
risks to the grandparents’ economic stability and
connection with peers, the grandchildren have an
opportunity to learn more about their family’s his-
tory and family tradition than those children not
raised by grandparents, and grandparents receive
more support from their grandchildren compared
with those grandchildren not raised by their grand-
parents (Rosenthal & Gladstone, 2000). Although
grandparents often struggle with the isolation and
economic hardship, most provinces in Canada pro-
vide financial support, health care, and legal sup-
port for grandparents raising their grandchildren.
Ideals of Motherhood and Women
In Canada, prevalent ideas about mothering and
women shape families’ experiences, their health,
and health care provider expectations. These ideas
include mothers living with their husbands and
174 Families Across the Health Continuum
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being the primary caretaker for their children. De-
spite the diversity of family structures and roles, the
“gold standard” continues to be mothering within
a two-parent family (Ford-Gilboe, 2000), with the
ideal being exclusive mothering, or mothering
without work outside the home. Another social ex-
pectation for women is primary responsibility for
family caregiving for dependent elders or those
who are ill or have disabilities, especially in the
wake of changes to the health care and social serv-
ices systems that include deinstitutionalization
of care.
These expectations are at odds with other social
forces, however, including financial forces and
changes to views about women’s interests and ca-
pabilities. Women, including mothers, increasingly
are expected and desire to work outside the home
(Statistics Canada, 2012). In 2009, 72.9% of
women with children under 16 living at home were
part of the employed workforce; 64.4% of women
with children less than age 3 were employed, more
than double the figure in 1976, when only 27.6%
of these women were employed. Similarly, 69.7%
of women whose youngest child was from 3 to 5
years of age were working in 2009, up from 36.8%
in 1976. Social policy, such as “workfare” social as-
sistance policies, increasingly only provides finan-
cial assistance to women with dependent children
if they seek employment, making many of these
women feel that they are forced into waged labor,
even when the work available is not adequate to
cover the costs of safe child care. At the same time,
policies such as cuts to minimum wage levels have
deepened women’s poverty even as they attempt to
participate in the waged labor force (Pulkingham,
Fuller, & Kershaw, 2010). Women are also seeking
higher education and more professional careers. A
study by Caponi and Plesca (2009), looking at
trends in education, wages, and work hours, found
that 50% of women were graduating from college
and universities compared with only 44% of men.
This trend has also contributed to women shifting
away from the more traditional role of full-time
caregiving to the more common role of shared re-
sponsibilities between work and career and home.
As described earlier, the “ideal” of the nuclear
family is often just that, an ideal. Women are in-
creasingly lone parents, often living below the
poverty line and often on social assistance (Statis-
tics Canada, 201a). At the same time, changing ex-
pectations of men as fathers mean that fathers are
somewhat more actively engaged in child care and
somewhat more likely to be the head of lone-par-
ent families than in previous decades. In 2006,
there were about four times as many female lone-
parent families (1.1 million) as male lone-parent
families (281,800) (Statistics Canada, 2011a). This
ratio has been fairly consistent over the past several
decades, but from 2001 to 2006, male lone-parent
families grew more rapidly (15%) than did female
lone-parent families (6.3%). At least partly because
of gender economics, many children are not being
raised by their mothers. For example, the 2006
Canadian census reported that over 28,000 grand-
children younger than 18 years were living with
their grandparents without parents in the home,
with implications for the health of older men
and women. Based on federal and provincial and
territorial reports from 2000, Farris-Manning and
Zandstra (2004) estimated that approximately
76,000 children in Canada were under the protec-
tion of Child and Family Services across the coun-
try. These trends, juxtaposed against ideals of good
mothering, have contributed to phrases such as
“working mother” and “welfare mom” that convey
negative judgments.
In fact, when families are judged against the
ideal of “exclusive” mothering, or against the ideals
of family caregiving, they are often found wanting.
That is, when women do not devote themselves to
mothering exclusively or take up caregiving for a
parent, spouse, or other dependent person and
forego labor force participation, they are often
judged as providing inadequate mothering. Still,
the economic and social conditions do not exist for
most women to care for children and other de-
pendents without also participating in waged work.
In Canada, as in most Western countries, the “typ-
ical” mother is working outside the home and is
often the lone head of a household and may also be
living under or near the poverty line, while at the
same time being responsible for mothering and/or
caregiving of other family members.
Family as Safe and Nurturing
In Canada, as in many Western countries, family is
portrayed generally as positive, supportive, and
safe. But statistics belie this ideal as well. Canada is
similar to other Western countries in the levels of
violence perpetrated within families and levels of
substance use. According to the most conservative
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estimates, 7% of female individuals and 6% of male
individuals in current or previous spousal relation-
ships reported having experienced some form
of spousal violence during the previous 5 years
(Statistics Canada, 2006). Violence against women
tends to be much more severe than against men.
Between 1995 and 2004, male individuals perpe-
trated 86% of one-time incidents, 94% of repeat
(two to four) incidents, and 97% of chronic inci-
dents (Statistics Canada, 2006). In that same time
frame, the rate of spousal homicide against female
individuals was three to five times greater than the
rate of male spousal homicide, a ratio that remains
consistent up to 2009 (Zhang, Hoddenbagh,
McDonald, & Scrim, 2012). In 2009, 46,918
spousal violence incidents were brought to the at-
tention of police, 81% involving female victims and
19% involving male victims (Zhang et al., 2012).
Using population surveys, lifetime rates of physical
assault by an intimate partner have been estimated
at 25% to 30% in Canada and the United States
(Johnson & Sacco, 1995; Jones et al., 1999). Phys-
ical assault is often accompanied by sexual violence
or emotional abuse, and many women experience
intimate partner violence in more than one rela-
tionship over their lifetime (Johnson, 1996).
Estimates of child abuse rely primarily on cases
reported to child welfare authorities and are thus
gross underestimates. Based on data from child
welfare authorities, the Canadian Incidence Study
(CIS) of Reported Child Abuse and Neglect esti-
mated a rate of 21.52 investigations of child mal-
treatment per 1,000 children (Public Health
Agency of Canada, 2001). Importantly, the greatest
proportion of reported and substantiated child
abuse cases involved neglect, which often overlaps
with the social conditions created by poverty. So-
cioeconomic status has been shown consistently to
be related to parenting effectiveness (Wekerle,
Wall, Leung, & Trocmé, 2007). Despite the preva-
lence of neglect, less attention is paid to neglect in
research, policy, and practice than to severe physi-
cal abuse and child sexual abuse, possibly in part
because those forms of abuse are more sensational
(McLean, 2001) and more visible. Child welfare
authorities tend to focus on risk assessment and ur-
gent intervention for severe cases of child physical
abuse, rather than on the more frequent situations
of neglect. Trocmé, MacMillan, Fallon, and De
Marco (2003) argue that because the CIS found
severe physical harm (severe enough to warrant
medical attention) in about 4% of substantiated
cases, assessment and investigation priorities need
to be revised and include consideration of long-
term needs for housing, income, child care, and so
on. Health care providers should focus on helping
families to access longer-term and broader social
support.
Although it is difficult to estimate the extent
of elder abuse in Canada, it is purported to be a
significant problem (Walsh & Yon, 2012). Almost
2% of older Canadians indicate that they had ex-
perienced more than one type of abuse (Canadian
Centre for Justice Statistics, 2011). Elder abuse
and neglect encompasses intimate partner violence
that continues into older adulthood, and forms
of abuse and neglect that arise as persons become
more vulnerable with age. As with any form of
intimate partner violence, in older adults it is gen-
dered—that is, older women are at greater risk than
men. Statistics Canada (2011c) reported that in
2009 although the overall rate of violent victimiza-
tion was higher for senior men than senior women,
family-related violent victimization was higher
among senior women. Spouses and grown children
were the most common perpetrators of family vio-
lence against senior women, and grown children
were most often the perpetrators of family violence
against senior men.
Substance abuse within families is another fac-
tor that may make the experience of family less
than safe and nurturing. Most problematic use in
Canada involves alcohol. The Canadian Addiction
Survey found that, although most Canadians
drink in moderation, 6.2% of past-year drinkers
engaged in heavy drinking (five drinks or more in
a single sitting for male individuals and four or
more drinks for female individuals) at least once a
week and 25.5% at least once a month (Collin,
2006). Using the Alcohol Use Disorder Identifi-
cation Test, which identifies hazardous patterns
of alcohol use and indications of alcohol depend-
ency, Collin (2006) identified 17% of current
drinkers as high-risk drinkers. Although most
heavy and hazardous drinkers were male individ-
uals younger than 25, this pattern suggests that
harmful alcohol use is fairly common. According
to the 2002 Canadian Community Health Survey,
2.6% of Canadians age 15 and older (3.8% male
and 1.3% female) reported symptoms consistent
with alcohol dependence at some time during the
12 months before the survey. Rehm et al. (2006)
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estimate that 9% of disease and disability in
Canada is caused by alcohol use. A range of prob-
lems are associated with problematic alcohol use,
including violence and neglect. In 2004, 14% of
Canadians reported using cannabis in the past
year and 1% or less reported using other illegal
drugs other than cannabis. For those who do use
drugs, the effects on families can be profound. For
example, one of the most common reasons stated
for grandparents raising grandchildren is paternal
drug abuse and addiction (Rosenthal & Glad-
stone, 2000). For those children raised in a family
with active addiction, the risk for all types of abuse
increases. Further, several studies in both Canada
and the United States document long-term nega-
tive outcomes for children being raised by parents
addicted to alcohol and other drugs, including
mental health risks, higher rates of unemploy-
ment, and poor relationship success. For example,
a study of 8,472 families in Canada by Walsh,
MacMillan, and Jamieson (2003) found that chil-
dren exposed to drug-addicted parents were twice
as likely to be abused than those without drug
addiction in their family.
Given the statistics on violence, neglect, and
substance use, although many families are safe
and nurturing, nurses cannot safely make this
assumption. Indeed, in light of the levels of
violence against women, children, and older per-
sons, and the levels of substance use, nurses can
anticipate that many families they meet are expe-
riencing some form of violence, neglectful par-
enting, or problematic substance use. In Canada,
it is mandatory to report child abuse, but it is not
recommended to screen for child abuse. Because
of the high rate of false-positive results in screen-
ing tests for child maltreatment and the potential
for incorrectly labeling people as child abusers,
the possible harms outweigh the benefits
(MacMillan, 2000). Similarly, insufficient evi-
dence of benefit has been reported to warrant
screening for other forms of violence (Coker,
2006; MacMillan et al., 2009; Ramsey, Richard-
son, Carter, Davidson, & Feder, 2002) and there
are no reporting requirements for other forms of
abuse outside of child abuse. Nevertheless, nurses
need to be aware that family is not always a safe
and nurturing experience for people, and to be
responsive to indications of harm. Alternatives to
screening include “case finding” in which nurses
have a clear understanding of the dynamics of
violence and abuse, and develop their practice
based on that understanding, using such knowl-
edge to attend to each family’s presentation
(Ford-Gilboe, Varcoe, Wuest, & Merritt-Gray,
2010). Case finding does not stop at identifying
families at risk and in need of further evaluation
and intervention, but rather begins the assess-
ment phase to identify and explore the incidence
of family violence.
CANADIAN HEALTH CARE CONTEXT
The funding and structure of the Canadian health
care system influences families, health, and family
nursing. Although Canada has “universal” health
care and all Canadian citizens have access to what
are termed medically necessary services, considerable
inequities are present in access to health care, and
these inequities are deepening as the health care
system is increasingly privatized. The privatized
portion of health care primarily includes funding
for services and products not covered by the public
services and not considered medically necessary,
such as vision and dental care, cosmetic surgery,
most home health services, and pharmaceuticals.
The amount covered and uncovered by the public
health care system varies from province to
province. Currently, the health care system in
Canada is approximately 70% publicly funded and
30% privately funded. This means that many im-
portant elements of health care are paid for by in-
dividuals or by private insurance. Therefore, in
most provinces, medications outside of hospital,
many types of treatments such as physiotherapy,
and services such as home care are paid for pri-
vately in whole or in part. In contrast, the govern-
ment discourages physicians from providing private
care through disincentives such as requiring physi-
cians to choose either private or public clients,
charging patients the same fee whether paid by
public or private insurance, and in some provinces,
banning privatized medical care for any essential
medical services.
Thus, despite commitment to universal access,
access to health care in Canada is inequitable along
many dimensions (Asada & Kephart, 2007; Barr,
Pedersen, Pennock, & Rootman, 2008). Families
in rural settings have access to fewer services and
must pay for their own transportation, accommo-
dation, and loss of income to access services.
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3921_Ch06_165-186 05/06/14 10:59 AM Page 177
Families without private insurance and those with
lower incomes face more financial hardship associ-
ated with illness. Because some groups of people
are more likely to have lower incomes, such as
those who are elderly, those with disabilities, and
women, families from such groups are more likely
to face greater barriers.
Although the Canadian health care system has
been dominated by hospital care, over the past sev-
eral decades fiscal concerns have stimulated shifts
to decrease hospital care and increase the care pro-
vided at home. From mental illness, to surgery, to
maternity care, to elder care, to end-of-life care,
the trend has been to deinstitutionalize care,
shorten length of stay, and shift to care “in the
community.” Such care mostly means care by fam-
ily members, primarily women (Statistics Canada,
2011a), which affects family well-being and health,
and, in turn, affects patterns of family nursing
(Funk et al., 2010; Williams, Forbes, Mitchell, &
Corbett, 2003). Family nurses need to provide
added support to all family members in teaching
home health care to avoid women in the family
suffering from role overload and caregiver
burnout. Family nurses can also help advocate for
families needing hospitalized care longer when
family members are unable to care for the individ-
ual at home.
Family nursing is not funded or identified as a
separate area of practice in Canada, with most
nurses still practicing in hospital settings. Because
government health care funding only covers what
is deemed to be medically necessary, only a very
small proportion of nursing care in homes and
communities is funded, leaving families to pay di-
rectly. Increasingly, in some areas, the shortage of
primary care physicians has made room for family
nurse practitioners to provide primary care and
enhance health care access. These trends shape
families’ experiences of health and affect their
health care.
FAMILY NURSING PRACTICE:
ATTENDING TO CONTEXT
To this point, this chapter has spoken to the sig-
nificance of context and offered details on the
specific context in which nurses operate in
Canada. As the discussion earlier has highlighted,
families in Canada live diverse lives that are
shaped by the interface of geography, economics,
culture, language, and religion. Similarly, their
lives and their health and illness experiences are
shaped by differing understandings and forms of
“family” and by the imperfect health care system
in place in Canada. This health care system, in-
cluding policies and norms that dominate health
care practices, has been built on limited under-
standings of family and health. For example, un-
derstandings of family most often reflect
Eurocentric, post–World War II notions of the
nuclear two-parent, heterosexual family. It is the
discrepancy between the reality of families’ lives
and the normative expectations and understand-
ings of family that often dominate health care set-
tings and practices that make attending to context
not only important but ethically essential in fam-
ily nursing practice.
Overall, attending to context requires taking a
relational inquiry stance as a family nurse. It in-
volves listening carefully to families; inquiring
into their health/illness situations; paying atten-
tion to, observing, and critically considering the
ways in which contextual elements are embodied
in people/families and shape their experiences;
and reflecting on how current contextual aspects
might be addressed to promote health. An essen-
tial feature of this inquiry process is reflexive con-
sideration of your own contextual location,
including the values, norms, and assumptions of
family, health, and nursing that you act both from
and within.
The following story illustrates the significance
of context to families’ health experiences and how
attending to context enhances family nursing
practice. As you read Sharon’s story, stay mindful
of the contextual elements that seem to be shap-
ing the experiences of the two families she meets.
Focus on how the elements discussed earlier (e.g.,
geography, economics, culture, language, reli-
gion, understandings of family, health care poli-
cies, and normative practices) are shaping the
experience and responses of the different family
members and of Sharon as a nurse. Also note how
Sharon is or is not attending to those elements as
she engages with the families. Ask yourself how
your own context is similar to or different from
Sharon’s, and from the two families’. Further-
more, reflect on how those similarities and dif-
ferences might affect how you would respond as
a nurse.
178 Families Across the Health Continuum
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Relational Nursing and Family Nursing in Canada 179
and how important supportive family is. Mr. Stanek be-
comes annoyed and insists that they cannot come to clinic
again. As Greg’s father becomes more frustrated, Sharon
finds it more difficult to understand what he is saying be-
cause of his heavy accent and rapid talking. Sharon tries to
engage Greg by asking him how he is feeling and how it is
going at school, but Greg answers Sharon’s questions by
shrugging his shoulders and saying “OK.” Greg’s father
attempts to return the conversation back to his own con-
cerns. Eventually, Sharon says that she will “see what she
can do.” The half-hour clinic visit ends with little of the in-
take form completed, all parties feeling frustrated, and no
follow-up appointment scheduled. As Sharon walks out of
the room, the clinic receptionist lets her know that Justin
and a woman, who turns out to be his grandmother, have
been waiting to see her for their appointment.
Sharon reviews what she knows about Justin from read-
ing his intake information. She remembers that the Stony
Life Reserve is located several hours from the hospital in
which her clinic is located, and that Jackson is a small town
near the reserve. Sharon wonders how Justin and his
grandmother got to the clinic today. As she walks in the
room, Sharon apologizes for keeping them waiting and
asks if they drove to the appointment. Justin’s grandmother
says one of her brothers drove them because the appoint-
ment was too early to be able to come by bus. She also
shares that she had to borrow money to pay her brother
for gas. Sharon does a brief physical assessment on Justin.
Justin, like Greg, barely looks at Sharon, even when she is
addressing him directly. Justin appears somewhat over-
weight, as does his grandmother, and on assessment
Sharon notes that he is 4 feet 5 inches tall and weighs
55 kg (121 lb). With Justin and his grandmother, who in-
troduces herself as Rose Tarlier, the intake assessment
goes more smoothly for Sharon. Mrs. Tarlier tells her that
she has had custody of Justin and his two younger sisters
since he was 4 years old and the sisters were infants. She
shares with Sharon that Justin’s mother, her daughter, has
had problems with alcohol for many years, is now living in
Montreal, and has not seen her children for several years.
Mrs. Tarlier makes it a point to tell Sharon that she herself
has been “clean and sober” for more than 20 years. As
Sharon continues with the intake assessment, she finds out
that Justin’s grandmother gives Justin his insulin and helps
him check his blood sugar. Sharon listens as the grand-
mother describes what she has been doing, and Sharon
provides positive feedback and encouragement. Although
Sharon tries to bring Justin into the conversation, he does
not look at her and does not answer her questions. Sharon
reviews what subsequent appointments will cover, and
Family Case Study: Sharon’s
Story
After several years of experience on a pediatric medical
unit, Sharon has begun to work in a pediatric diabetic
teaching clinic. She just completed her 1-week orientation,
and this morning is about to do an “intake” on two families
new to the clinic. It is clinic policy to have a half-hour ap-
pointment for “intake” and 15 minutes for subsequent ap-
pointments. Families usually attend the clinic for about
three or four sessions, biweekly, depending on their needs.
The referral information Sharon has on the two families is
as follows:
• Family 1: Justin Henderson, 11 years old, is from Stony
Life Reserve (designated land for Native Americans).
Justin has been newly diagnosed with diabetes. He
began an insulin regimen on Tuesday (3 days ago) that
was ordered by the general practitioner in a walk-in clinic
close to where he lives; Justin was referred to the clinic
for diabetic teaching and counseling. This is his first visit
to the clinic.
• Family 2: Greg Stanek, 12 years old, is from Belcarra.
Greg has been newly diagnosed with diabetes. His in-
sulin regimen was started yesterday by the family’s
general practitioner, who referred Greg to the clinic for
diabetic teaching and counseling. This is his first visit.
Justin’s appointment was scheduled for 9:00, but he
does not arrive on time. At 9:15, Sharon decides to see
her other new client, Greg Stanek, because he and his fa-
ther arrived early. Greg seems small for his age; he is thin
and looks quite pale. He is very quiet and barely looks at
Sharon. Greg’s father speaks with heavily accented Eng-
lish that Sharon recognizes as Czech, in part because she
associates Belcarra with the large community of people
who emigrated from the Czech Republic. Sharon does a
brief physical assessment, noting that Greg is 4 feet 8
inches tall, but weighs only 41 kg (about 90 lb). Sharon
attempts to take the family history as outlined on her in-
take form, but Greg’s father wants to address the fact that
he cannot bring his son to clinic. Greg’s father tells Sharon
that he was just laid off from his job as a carpet layer and
is required by unemployment insurance policies to be
searching for work. Mr. Stanek says bitterly that when he
came to Canada he had been promised he could find
work in his field as a mining engineer. Greg’s mother
works in a local meat processing plant, and she cannot
take time off to bring Greg to the clinic without risking the
loss of her job.
Sharon reinforces with the father how important it is for
Greg to learn about his diabetes and how to manage it, (continued)
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180 Families Across the Health Continuum
thinking about the distance and gas money, asks if they
need one longer appointment next week rather than the
usual two short ones a week apart. She schedules the next
appointment.
Taking a Relational Inquiry Stance:
Attending to context begins by taking a relational inquiry
stance to understand what is meaningful and significant to
a particular family, and inquiring into the family’s current ex-
perience and the contextual intricacies shaping the family’s
life. In taking this stance with the two families in the earlier
story, what becomes immediately apparent is the way that
contextual forces have contributed to and are shaping each
of the family’s situations. For example, although Justin’s
family may want to live in the Aboriginal community for
cultural and social reasons, it may have little choice for eco-
nomic reasons. Justin’s grandmother may well be one of
many Aboriginal women living on low income or in
poverty. At the time of the 2001 census, based on before-
tax incomes, more than 36% of Aboriginal women, com-
pared with 17% of non-Aboriginal women, were living in
poverty (Townson, 2005). High rates of poverty among
Aboriginal people have overwhelming effects on health,
with the life expectancy of Aboriginal people being 7 years
less than the overall Canadian population. Also, as Town-
son notes, there are almost twice as many infant deaths
among Aboriginal peoples compared to the national norm.
As noted, Aboriginal children are much more likely to live
in poverty than other Canadian children.
The fact that Justin lives on a reserve may negatively
influence his health care access and ability to adhere to
recommendations. The matrix of policies related to Abo-
riginal people in Canada has ensured that many reserve
communities have been denied access to traditional
foods (fish, game, naturally growing plants) and have
substandard housing, poor water supplies, and insuffi-
cient income opportunities. Justin’s grandmother’s atten-
dance at residential school, both his mother’s and
grandmother’s experiences with alcohol, and the current
situation with Justin’s grandmother being his primary
caregiver present a clear example of the impact coloniza-
tion has on family well-being. Historical colonizing poli-
cies and practices in Canada included the creation of the
Indian Act; removal of entire communities onto reserves,
often with insufficient resources to sustain the commu-
nity; government appropriation of Aboriginal lands;
forced removal of children into residential schools; out-
lawing of cultural and spiritual practices; and widespread
discriminatory attitudes toward Aboriginal peoples. The
effects of colonization continue to shape people’s health,
social, and economic status today (Kubik, Bourassa, &
Hampton, 2009). Colonizing practices continue as
Aboriginal people are racialized by wider society and
governed by race-based policies, including those related
to land ownership, banking, and health care.
Although Justin and his grandmother’s situation may
not reflect all of these contextual challenges, this historical
and current contextual backdrop shapes their situation and
responses to health care providers, including their willing-
ness and ability to attend clinic. Moreover, the challenges
they face accessing the clinic (e.g., appointment times that
are out of sync with bus schedules, having younger chil-
dren to care for, the cost of travel) may make coming to
clinic seem less than positive in terms of the effect on
Justin’s and the family’s overall health.
Similarly, Greg’s family experience has been shaped by
multiple factors. Both parents are facing significant job
insecurity. The family has experienced immigration laws
and policies that limit employment opportunities and con-
tribute to the “downward mobility” experienced by many
well-educated immigrants. As described, children in recent
immigrant families and racialized families are most likely to
live in poverty because of overrepresentation of racialized
groups in low-paying jobs, market failure to recognize
international work experience and credentials, and racial
discrimination in employment (2011 Child Poverty Report
Card, First Call, 2011).
Canada is a country of considerable ethnic diversity,
but despite national commitment to tolerance and multi-
culturalism, racialized groups experience considerable
discrimination both in policies and institutions, and in the
attitudes expressed toward them at an interpersonal level.
Was this playing out during the clinic visit? Although it
may not have been Sharon’s intent to be discriminatory,
the way in which she disregarded the contextual reality of
Mr. Stanek’s employment and its implications for future
clinic visits and the frustration she felt toward him was a
form of intolerance. Taking a stance of inquiry to attend
to context would have enabled Sharon to be aware of the
likelihood of discriminatory experiences and of the poten-
tial health effects.
Listening and Paying Attention to Experience
and Context:
Attending to context involves listening carefully to families,
and to what is meaningful and significant within the cur-
rent context of their lives. For Justin and his grandmother,
who live in a rural setting, and for Greg’s family, where
both parents need to work, it becomes apparent that ge-
ography, economics, and health are intricately intertwined.
For example, although for Sharon what is most significant
is getting Greg’s family to attend clinic so Greg’s diabetes
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Relational Nursing and Family Nursing in Canada 181
can be monitored and addressed, for Greg’s father, find-
ing and maintaining employment is of greatest concern.
Moreover, the experience of being told that he would be
able to work in his profession and then finding that this
was not the case may well be influencing his response
and willingness to engage with yet another authority and
institution that does not seem to be recognizing the im-
portance of his employment or interested in what is most
pressing for him. Although Sharon cannot address the
employment concern directly within her current role (i.e.,
she cannot help find him a job), it is obvious that those
concerns will ultimately affect Greg’s experience and
management of diabetes. Thus, listening to and recogniz-
ing the interrelationship of those concerns regarding how
the family will be able and willing to care for Greg and his
diabetes is crucial.
In fact, the well-intended clinic may be heightening
health challenges for families by not considering these con-
textual elements. Even how clinic appointments have been
structured as short, frequent sessions affects both families’
ability to attend clinic and ignores the socio-environmental
elements affecting families’ health on a day-to-day basis.
Thus, attending to family context involves also attending to
the health care context. Depending on the setting of care,
the nurse would have to work within that context to sup-
port more responsive care. For example, is it possible to
have fewer, longer appointments? Is a longer intake visit
possible—not just for Greg’s family, but for others as well?
Even within the prescribed time frame, the nurse should
acknowledge what is of meaning and significance to the
family.
Attending to context involves acknowledging Greg’s fa-
ther’s distress about his employment and inviting him to
talk about what it has been like for different family mem-
bers as they have sought employment and attempted to
build a life with limited resources, support, or both. As part
of this process, it would be important to communicate re-
spect and genuine interest and concern, asking what might
be helpful from their perspective, how the clinic could as-
sist them in caring for Greg’s diabetes in light of the other
challenges they are experiencing. On the surface, focusing
on the father’s concerns might not seem to be the top
nursing priority (or even relevant to diabetic care), but
doing so might reduce frustration for both Sharon and
Greg’s father, make better use of time, and allow them to
attend to Greg’s diabetes more effectively. If the family
concerns are not addressed, Greg’s care is jeopardized,
because he may not come back to the clinic.
Listening and paying attention to experience and con-
text with Justin’s family brings attention to the geographical
distance between the family’s home and the clinic, and
raises questions about other possibilities for supporting the
family in diabetes care. For example, knowing the eco-
nomic statistics for Aboriginal women, the cost of travel to
the clinic might have an impact on the family. If the family
is on a limited income, frequent travel may be impossible
and may take money from other essential needs. In re-
sponse, Sharon might look into resources at the local level,
such as a community health representative or local com-
munity health nurse, who might be able to provide face-
to-face care to the family while liaising with the clinic so
that the family does not need to travel such a great
distance so frequently.
Overall, attending to context sets one up to be curious,
to be interested, and to inquire, rather than make judg-
ments and assumptions based on surface characteristics
and behaviors. For example, both Greg and Justin were
quiet, did not make eye contact, and did not respond very
much to Sharon. Rather than making assumptions about
the children based on her own location and context,
Sharon might intentionally reflect on the contexts in which
they have been living recently. As a result, their responses
might be viewed through a range of possibilities, including
everything from wondering about the physiological effect
of diabetes, to the immediate effect of the diagnosis of dia-
betes, to the experience of coming to the clinic for the first
time, to the multiple contextual experiences and challenges
they and their families have been living. Part of assessing
the context includes the awareness of cultural differences,
which affect eye contact, reaction to health professionals,
reaction to genders, and behavior toward adults and elders.
Attending to context can cue nurses to stay open to possi-
bilities, gently and thoughtfully reaching out to connect with
people and families as they are in the moment. Rather
than focusing on behavior or lack of response as a prob-
lem or frustration, any response is viewed contextually.
People and families are not measured against any norms;
rather, the goal is to understand their reactions contextually
and to respond in a meaningful and relevant manner using
inquiry rather than judgment.
Attending to context also moves us beyond the imme-
diate situation of particular patients to question how larger
policies and structures governing our practice and agency
are affecting families. That is, the contextual particularities
of these families reveal limitations of the policies and struc-
tures of the clinic more generally. Clinic policies and struc-
tures might need to be changed to be more responsive to
families. For example, offering home visits, evening ap-
pointments, or both for families who have both parents
working and are unable to make daytime appointments
might enhance the clinic’s responsiveness. Similarly, seeing
(continued)
3921_Ch06_165-186 05/06/14 10:59 AM Page 181
182 Families Across the Health Continuum
the family in context draws attention to the importance of
working with the contexts within which the families live.
This could include everything from intentionally establishing
relationships with government departments and commu-
nity agencies that are part of the family’s context that might
liaise with the clinic in providing services and resources, to
lobbying for increased access and resources for particular
groups or particular services and supplies.
In regard to these particular families, first, the nurse
would want to optimize her ability to provide optimal care
given the restrictions within the current system. She must
prioritize her care to both acknowledge the families’ cir-
cumstances and begin to support Greg and Justin within
their families and those circumstances. Beyond a more
flexible pattern of appointments, are there other providers
who might be involved? A social worker, child and youth
care worker, or other resources may be available. Ways to
enhance access to health care, such as resources for
transportation, may be available. The nurse would want to
draw on broader social resources, such as those related
to immigration and employment, resources for working
parents (i.e., evening hours, weekend hours, online care,
etc.), and resources for parents (i.e., counseling, support
groups, other forms of diabetic care education such as
local classes, online classes, books, home health serv-
ices). Acknowledging Greg’s father’s concerns and sup-
porting him through referrals will allow the nurse to
integrate attention to the family while focusing on Greg
and his diabetes. In so doing, Sharon will develop ap-
proaches and knowledge of resources for a range of other
families as well.
Reflexivity:
Reflexivity, meaning intentional and critical reflection on
one’s own understanding and actions in context, is cen-
tral to using contextual knowledge. Reflexivity draws
attention to a nurse’s own contextual background, includ-
ing taken-for-granted assumptions, stereotypes, and
knowledge one draws on when engaging with families.
Examining how a nurse’s own context and social location
shape and structure her nursing is a first step to attend-
ing to families’ contexts. For example, if Sharon had
grown up in a rural setting or in poverty, it would be
important for her to consider reflexively how those expe-
riences influence her when working with families who
share that context and social location. Her background
might lead her to see herself as successful despite those
constraints, and to overlook how the challenges she
faced and privileges she enjoyed might differ from the
experiences of the families with whom she is working.
Or, if she had grown up in a middle-class urban setting,
she may find that she is somewhat oblivious to or does
not think to consider the challenges that poverty and
geography raise in accessing health care. Similarly, as a
nurse working within a diverse milieu, it is important for
Sharon to consider how her own family history might be
shaping her attitudes toward immigrants, people whose
first language is not English, racialized groups, Aboriginal
people, and other groups. Perhaps she herself is an im-
migrant, perhaps she is a member of a racialized group,
or perhaps she is a member of dominant groups—English
speaking, Euro-Canadian, middle class. It is important
that she ask herself how her religious affiliations (or lack
thereof) shape how she thinks religion is relevant to
health and to her nursing practice.
Although each aspect of Sharon’s social location may
shape her thinking, as Applebaum (2001) notes, one’s
social location “does not imply that we are inevitably
locked within a particular perspective. White feminists can
be anti-racist, men can be feminists, and heterosexuals can
be ‘straight but not narrow’” (p. 416). By reflexively scruti-
nizing our own social locations, we can examine our
understandings and make explicit decisions about how
to draw on (or not) various views and assumptions.
Examining our own contexts and social locations to
see how we are limiting our views of families can be
challenging. We can see more easily our own disadvan-
tages than our privileges. For example, Sharon might
have to work harder to see how her privilege as a se-
curely employed, fluent English-speaking health care
provider gives her an advantage that Greg’s father does
not have. If she has experienced employment disadvan-
tages based on her gender, she might see him as a
privileged man and have difficulty recognizing the
challenges he faces.
Overall, reflexivity in family nursing involves developing
a critical awareness of our own context and social loca-
tion, scrutinizing how that context/location is shaping our
view of a particular family, and intentionally looking be-
yond that location to consider the family within its own
context. In Sharon’s situation, this would involve her
examining how the rural context, economics, language,
ethnicity, and religion, and her understandings of these,
shape how she is engaging with the families. She might
ask how her own experiences of family are shaping her
ability to see and accept the differing forms of family—for
example, a family in which the parents are separated,
such as Greg’s, and a grandmother-led family such as
Justin’s. How does her own location enable or limit her
ability to understand how difficult it might be for Greg’s
father and mother to get him to the clinic appointments
given their current family situation?
3921_Ch06_165-186 05/06/14 10:59 AM Page 182
Relational Nursing and Family Nursing in Canada 183
Engaging in such reflexive examination also enables consid-
eration of the wider sociopolitical elements shaping families’
experiences, such as contextual factors (e.g., the stress of
immigration), that may have contributed to Greg’s parents
separating from one another. At the same time, approaching
her work in this reflexive manner highlights areas where she
may need to learn more. For example, how well does
Sharon understand the history of the Aboriginal people with
whom she is working? How well does she understand the
relationship between historical trauma and diabetes? How is
diabetes cared for in Czechoslovakia versus the Aboriginal
culture versus the broader Canadian culture? What are the
roles of children in understanding and participating in their
care across these multiple overlapping cultures?
present standardized action steps. The same action may in
one case be responsive and health promoting and in an-
other case not be. Thus, the question of how to intervene
is one that needs to be asked in and tailored to each and
every situation: How might I best relate to this family in a
way that is meaningful and significant and promotes their
health and healing capacity?
Consider how you might respond as a family nurse in
the situation above. Where would you begin? What would
you focus on? For example, it is evident from their facial
expressions and the question they pose that the daughters
are very worried about their mother. That might be an ef-
fective place to start because the question points to their
immediate concern, to what is of meaning and significance
to them. “Following their lead” (their worried expressions)
is a form of both assessment and intervention in a rela-
tional inquiry approach. Acknowledging Sandra and
Simone’s worry could be a way of joining them in their
experience and furthering your understanding of both the
immediate family situation and the context of their lives.
As you follow their lead and inquire into their living
experience and what is of meaning and significance to
them, focus too on picking up contextual cues. For exam-
ple, you might respond by sharing your observations in a
tentative manner by stating, “You look pretty worried,” or,
“It’s hard not knowing what is wrong with your mom,” to
invite them to confirm, expand, or modify your under-
standing. Making inclusive observations, asking open-
ended questions, and being interested to “know more”
invites people/families to lead the way. By working in this
collaborative manner, you work with the family to make
connections between experiences and context and dis-
cern the “so what” for action. This involves recognizing
the patterns of capacity and of adversity that are simulta-
neously part of the person’s/family’s illness experience. It
also enables you to understand how contextual elements
are shaping the situation and what their immediate
needs might be. For example, as you look contextually
you might be concerned about the caregiving load that
Simone is carrying (looking after her mother, brother, and
grandfather). If you were working from a relational in-
quiry approach that nursing concern is not something
you know, you inquire into its relevance in terms of ca-
pacity/adversity; keep in mind that what might be con-
sidered to be adversity to one person/family, may not be
adversity to another. Asking “How has it been for you to
be caring for your mom, brother, and grandfather while
your mom is ill?” enables you to learn how contextual
elements are meaningfully experienced by the
person/family. By inquiring, you might find that nothing
Family Case Study: Attending
to Context
Mrs. Dickson, a 40-year-old woman admitted with a diagno-
sis of bowel cancer, is a single mother of four children who
is experiencing postoperative complications. Discharged
home 3 days prior, Mrs. Dickson has been readmitted via
ambulance with undiagnosed pain and extreme nausea.
Her eldest daughter Sandra (age 21 years and married)
and her third daughter Simone (age 17 years), who are
present in the room, describe how their mother collapsed
at home after screaming out in pain. Throughout Mrs.
Dickson’s illness, Simone, who is the eldest child at home
(their middle sister lives in another city), has taken the role
of primary caregiver for her mother, her 13-year-old brother,
and her 86-year-old grandfather, who lives with them. As
you enter the room, they are sitting beside their sedated
mother. They look up with strained expressions and ask
whether the doctors have figured out what is wrong with
their mom.
What Intervention Strategies Might
You Employ?
A relational inquiry approach to family nursing rests on the
assumption that what constitutes high-quality nursing care
can only be determined in the relational situation. Because
the experiences of people/families vary so greatly, as do
the realities within which health care occurs, there is no
linearly laid out sequence or prescribed method. There are
no prescriptions for assessment or action because it all
depends on the situation. What constitutes contextually
responsive care depends on the particularities of specific
nursing situations. Because we work with particular
people/families in particular situations, it is impossible to (continued)
3921_Ch06_165-186 05/06/14 10:59 AM Page 183
SUMMARY
■ One of the few predictable characteristics of
families is diversity. By understanding and
intentionally attending to diversity when
providing care, family nurses in Canada are
prepared to take into account the contextual
nature of families’ health and illness experi-
ences, and how their lives are shaped by their
circumstances.
■ Contexts are literally embodied in people;
both nurses and families live their contexts
and circumstances.
■ For family nurses in Canada to work respon-
sively with a range of different families, it re-
quires understanding the particular families.
■ Understanding the families entails taking a
stance of inquiry, listening and paying at-
tention to the specific experiences of partic-
ular families, reflexively attending to one’s
own understandings, and continuously
developing new knowledge and cultural
awareness. This process embraces the com-
plexity of family nursing care and provides
more relational, and thereby more appro-
priate and successful, care for families.
■ Family nurses in Canada must also be aware
of the risks facing families, including chang-
ing family structures, risks for health dispari-
ties, risks for family violence, and risks for
families living in poverty, especially in rural
communities.
■ Family nurses in Canada must optimize fam-
ily care within a structure that limits out-
of-hospital care and limits access to care in
rural communities. Family nurses need to
collaborate with other providers and re-
sources to help families optimize their
health and long-term health outcomes.
184 Families Across the Health Continuum
has changed—that since her mother works long hours Si-
mone is used to assuming a lot of the domestic chores
or that she has a lot of support from friends or relatives.
Or, you may find that the added responsibility of caring
for her mother while her mother is ill is more than she
can handle, and she may open up and ask for more as-
sistance in problem solving.
As you “listen to and for context” you might learn
of other socio-contextual structures and processes
(economics, health care policies, values, norms, tradi-
tions, history) that are shaping the family’s experience.
Knowing the population you serve (e.g., income levels,
employment opportunities, social financial assistance)
you are attuned to listen for a range of possibilities
without assuming how this particular family “fits” with
population norms. So, this family might be fine in terms
of managing household and caregiving needs, but they
might not have access to money or transportation to
get to the hospital. Or, the worry for her mother may be
affecting Simone’s ability to do schoolwork or hold down
her part-time job that contributes to the family’s income.
Thus, as you listen contextually you are listening and
inquiring into resources—the resources they have,
need, and/or can access. You also listen for what has
enabled them to live in adversity—that is, what capacities
they have within them and/or have accessed or enlisted.
Similarly, you check your own view and your own capaci-
ties. Are your immediate nursing concerns obscuring
your understanding of broader contextual issues and/or
longer-term concerns? For example, given that you
are located in an acute care setting, is Mrs. Dickson’s
physical well-being your primary concern? Are you able
to extend your view to consider the longer-term health
impact of this illness situation? How do you balance
your need to care for Mrs. Dickson’s acute health
needs, while simultaneously consider her family
contextual needs?
Evaluating Family Nursing Action:
Specifically, relational inquiry involves asking the
person/family for their version of the story and purpose-
fully opening the space for their decision making. Thus,
evaluation of your nursing intervention involves an ongo-
ing reflexive process where you “check in” with both fami-
lies and yourself. Evaluation is centered in continually
asking the following questions: How might I be as respon-
sive as possible? How are my actions expanding (or con-
straining) the choice and capacity of this family? How
might I support this family in ways that are meaningful
to them and in ways that enable them to address their
concerns and realize their aspirations? Relational inquiry
helps you to evaluate nursing effectiveness in the longer
as well as the shorter term. For example, a quick dis-
charge may result in a readmission for Mrs. Dickson if the
context of the family situation is not taken into account. It
also helps you to provide family nursing care, beyond the
immediate individual patient and beyond the immediate
acute health care needs.
3921_Ch06_165-186 05/06/14 10:59 AM Page 184
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187
Genomics and Family Nursing
Across the Life Span
c h a p t e r 7
Dale Halsey Lea, MPH, RN, CGC, FAAN
C r i t i c a l C o n c e p t s
■ Genomics refers to the study of all genes in the human genome and their interactions with each other and
the environment.
■ Genetics refers to the study of individual genes and their effect on clinical disorders.
■ Biological members of a family may share the risk for disease because of genetic factors.
■ Families are unique and respond to genetic discoveries differently based on personal coping styles, family values,
beliefs, and patterns of communication. Even within the same family, members react differently.
■ In every case, it is the nurse’s role to support families to make decisions that are most appropriate for their particular
circumstances, cultures, and beliefs.
■ The two major nursing responsibilities when a genetic risk is identified are to help families understand that the risk is
present and to help families make decisions about management and surveillance.
■ Results of genetic tests are private and cannot be disclosed to other family members without the tested individual’s
consent.
■ Nurses identify accurate information and access resources for families with concerns regarding genetic and genomic
health risks.
■ All nurses, regardless of their areas of practice, apply an understanding of the effects of genetic risk factors when
conducting assessments, planning, and evaluating nursing interventions.
Some illnesses “run in families” and people com-
monly wonder if they, or their children, will de-
velop a disease that is present in their parents or
grandparents. The ability to apply an understand-
ing of genetics in the care of families is a priority
for nurses and for all health care providers. As a re-
sult of genomic research and the resultant rapidly
changing body of knowledge regarding genetic in-
fluences on health and illness, more emphasis has
been placed on involving all health care providers
in this field. This integration of genetic knowledge,
attitudes, and skills is especially important for
nurses, and is reflected in the Essential Nursing
Competencies and Curricula Guidelines for Genetics and
Genomics (Consensus Panel, 2008), hereafter re-
ferred to in this chapter as “essential nursing com-
petencies.” Essential nursing competencies include
both the ability to apply genetic and genomic
3921_Ch07_187-204 05/06/14 11:00 AM Page 187
knowledge in conducting nursing assessments and
the ability to assess responses to genetic and genomic
information (Consensus Panel, 2008). These com-
petencies are also identified in documents for general
practitioners in the United Kingdom (National
Genetics Education and Development Centre, 2008).
It is important for family nurses to be aware of
the effect of genetics on families because biologi-
cal family members share genetic risk factors. In
addition, families function as systems with shared
health risks that affect the whole family, and fam-
ily processes mediate coping and adaptation of
both individual family members and the family
unit as a whole (Walsh, 2003). Family members
inevitably have an effect on each other’s lives, and
in many cases, they support each other in seeking
and maintaining healthy growth and develop-
ment, regardless of their biological kinship. Much
of what is known about the health care needs of
persons with genetic conditions has focused on
the individual, with less attention directed toward
the person’s biological and socially defined family.
All nurses, regardless of their areas of practice,
apply an understanding of the effects of genetic
risk factors when conducting assessments, plan-
ning, and evaluating nursing interventions.
This chapter describes nursing responsibilities
for families of persons who have, or are at risk for
having, genetic conditions. These responsibilities
are described for families before conception, with
neonates, teens in families, and families with mem-
bers in the middle to elder years. The goal of the
chapter is to describe the relevance of genetic in-
formation within families when there is a question
about genetic aspects of health or disease for mem-
bers of the family. Family nursing knowledge is in-
complete without attention to the effects of genetic
factors on health and functioning of individuals, as
well as on family units.
GENETICS AND GENOMICS
The term genomics is commonly used to reflect the
study of all genes in the human genome, as well as
interactions among genes and with environmental
and other psychosocial or cultural factors (Feetham
& Thomson, 2006). The human genome consists
of approximately 3.1 billion bases of DNA se-
quence, some of which are unique to each person
(National Human Genome Research Institute,
2012). Individuals inherit genetic material from
their parents and pass it on to their children. Some
conditions result from a change or mutation in a
DNA sequence of a gene. A gene is defined as the
basic physical unit of inheritance (National Human
Genome Research Institute, 2013). For example,
Huntington’s disease results from a specific change
within the DNA sequence in a particular gene.
This is an example of a condition traditionally re-
ferred to as a “Mendelian” or “single-gene disor-
der” and is one that follows an identified pattern of
traditional inheritance in families, in this case, au-
tosomal dominant inheritance. Persons who are bi-
ologically related may have inherited many of the
same DNA sequences in addition to having shared
common environments with other family mem-
bers; this combination ultimately increases risks for
having similar specific illnesses.
Researchers also identify common genetic vari-
ations known as single-nucleotide polymorphisms.
These variations may not cause an actual disruption
in the DNA coding but can often be used as tools
that help scientists and clinicians recognize DNA
variations that may be associated with disease.
These conditions include common disorders, such
as diabetes, that are observed to occur more fre-
quently in families but do not follow a traditional
pattern of inheritance.
A core competency for nurses is to maintain
knowledge of the relationships of genetic and ge-
nomic factors to the health of individuals and their
families. Cancer provides an example of the rela-
tionships between genes, environment, and health.
The development of a malignant tumor is the result
of a complex series of changes at the cellular level.
A number of genes protect against cancer by regu-
lating cell division (during mitosis), and mutations
in those genes can occur over the course of a per-
son’s lifetime, affecting one’s predisposition to can-
cer. A person may be at increased risk of developing
cancer if an inherited mutation occurs in one of
those genes or if exposed to environmental factors
that influence genetic mutations. For example,
tumor suppressor genes help protect against the de-
velopment of breast cancer. If a woman inherits a
mutation in a tumor suppressor gene (such as the
BRCA1 gene), she has lost some of her protection
against breast cancer from birth, but she will not
necessarily develop cancer unless other cellular
changes (some of which are influenced by factors
such as her reproductive history) occur during her
188 Families Across the Health Continuum
3921_Ch07_187-204 05/06/14 11:00 AM Page 188
lifetime (Bougie & Weberpals, 2011). Others in her
family also may have inherited the same mutation
and are similarly at risk. If she subsequently be-
comes a smoker, she has an additional increased risk
for lung cancer because of the environmental influ-
ence of smoking on cell division in her lungs. In
families where smoking is the norm, there may be
a perceived “familial” condition because of the
shared environmental and genetic influences on a
number of members of the family. Box 7-1 lists in-
herited and multifactor inherited genetic conditions.
GENETIC TESTING
Genetic testing can be performed for several pur-
poses, including prenatal diagnosis, detection of
carrier status, predictive testing for familial disor-
ders, and presymptomatic testing. See Table 7-1
for types of genetic tests. Prenatal testing is avail-
able to pregnant women during a pregnancy, such
as prenatal testing for Down syndrome. Carrier
testing can tell people if they have (carry) a gene
alteration for a particular kind of inherited disorder
called an autosomal recessive genetic disorder, such
as cystic fibrosis or sickle cell anemia. Predictive
testing can identify individuals who have a higher
chance of getting a disease before the symptoms
appear. Predictive testing is available for inherited
genetic risk factors that make it more likely for
someone to develop certain cancers, such as colon
or breast cancer. Presymptomatic genetic testing
can indicate which family members are at risk for a
certain genetic condition that is already known to
be present in their family. This type of testing is
performed for people who have not yet shown symp-
toms of a disease, such as Huntington’s disease
(National Human Genome Research Institute, 2011).
The National Comprehensive Cancer Network
(2008) continually updates guidelines that specify
what kind of screening is indicated for a person who
has a gene mutation that increases the chances of can-
cer developing. For example, family members may
seek testing if they are at greater risk for familial colon
cancer (Madlensky, Esplen, Gallinger, McLauglin, &
Goel, 2003). In some cases, clinical practice guideline
criteria recommend that genetic testing be done to
determine whether a person is at risk.
A new type of genetic testing, called pharmaco-
genetic testing, is performed to examine an indi-
vidual’s genes to determine how medications are
absorbed, move through the body, and are metab-
olized by the body. The purpose of pharmacoge-
netic testing is so that health professionals can
create tailored drug treatments that are individu-
alized and specific to each person. For example,
there is a test that is used in patients who have
chronic myelogenous leukemia. The test indicates
which patients will benefit from the medication
Gleevec (National Human Genome Research
Institute, 2011). In addition, gene changes can af-
fect how an individual’s body metabolizes some
medications. For instance, patients can be tested
to see if they are poor metabolizers, intermediate
metabolizers, or ultrarapid metabolizers. Based on
the pharmacogenetic test results, patients would
be prescribed the right amount of the medication
for their body. For instance, pharmacogenetic test-
ing can help determine the best dose of the blood-
thinning medication warfarin. A patient who is a
Genomics and Family Nursing Across the Life Span 189
BOX 7-1
Genetic Conditions: Inherited and
Multifactor Inherited Genetic Conditions
■ Huntington’s disease
■ Cystic fibrosis
■ Sickle cell anemia
■ Familial hypercholesterolemia
Multifactor Conditions—Combination of Genetics
and Environment
■ Heart disease
■ Diabetes
■ Most cancers
■ Alzheimer’s disease
3921_Ch07_187-204 05/06/14 11:00 AM Page 189
poor metabolizer will be prescribed a lower dose
of warfarin, and a person who is an ultrarapid
metabolizer will be prescribed a higher dose of
warfarin (National Human Genome Research
Institute, 2011).
Another new type of genetic test, called direct-
to-consumer (DTC) genetic testing, is now avail-
able to the general public. DTC genetic tests are
offered over the Internet. They usually involve re-
ceiving a packet in the mail for DTC genetic test-
ing, which includes instructions and materials for
individuals to scrape a few cells from the inside of
their cheek and mail the sample to a particular lab-
oratory to perform the genetic tests (National
Human Genome Research Institute, 2012). Several
companies offer DTC genetic testing, including
the company 23andMe, which claims that its test-
ing can “help you manage risk and make informed
decisions” (23andMe, 2012).
The market for DTC genetic tests may increase
individuals’ awareness of genetic diseases and allow
them to take a more proactive role in their health
care (Genetics Home Reference, 2012). The types
of DTC tests that are offered include those that
evaluate parts of a person’s genome for variants
that may have an influence on that person’s risk for
developing particular diseases such as Alzheimer’s
disease. The DTC genetic tests offered by compa-
nies also claim they can test for particular genetic
markers that may indicate a person’s ancestry, per-
sonality, or physical traits, some of which may have
implications for the person’s health.
It is important that nurses are aware of DTC so
that they can advise patients interested in DTC to
meet with health care providers or genetic coun-
selors to learn more about this type of testing and
its accuracy and applicability to health care. Fur-
thermore, nurses and other health care profession-
als should be aware of the reliability of DTC
genetic testing. In 2010, the U.S. Government Ac-
countability Office (GAO) conducted a study of
DTC genetic testing to determine its reliability.
Using fictitious names for consumers, they submit-
ted samples to several DTC companies. The results
that the donors received about disease risk predic-
tions varied across the companies, showing that the
identical DNA samples submitted yielded contra-
dictory results. Sometimes, the DNA-based predic-
tions conflicted with their actual medical conditions
(U.S. Government Accountability Office, 2010).
People who are considering a DTC genetic test
should first talk about this type of testing with their
health care provider or a genetic counselor. The
concern is that without guidance from a health care
190 Families Across the Health Continuum
Table 7-1 Types of Genetic Tests
Diagnostic
Carrier
Predictive or presymptomatic
Prenatal diagnosis
Pharmacogenetic testing
Direct-to-consumer genetic
testing
Performed when signs and/or symptoms of a genetic condition are present. Confirms whether
or not an individual has the suspected condition.
Detects whether a person is a carrier of either an autosomal recessive or an X-linked disorder.
A carrier of an autosomal recessive condition usually has no signs of the condition and will be
at risk for having an affected child if the other parent is also a carrier. He has one normal copy
of the gene in question and one mutated copy.
A female carrier of an X-linked condition has one normal copy of the gene on the X chromo-
some and one mutated copy of the gene on the other X chromosome, and generally has no
signs or very mild signs of the condition. Her sons have a 50% chance of having the condition,
and her daughters have a 50% chance of being carriers.
Performed on healthy individuals; detects whether they inherited a mutation in a gene and,
therefore, whether they will or may develop a condition in the future.
Genetic test performed on the fetus. Indicates whether the fetus has inherited the gene mutation
that causes a specific condition and, therefore, whether the child will develop that condition.
Analyzes a person’s genes to understand how drugs may move through the body and be bro-
ken down. The purpose of pharmacogenetic testing is to help select drug treatments that are
best suited for each person.
Direct-to-consumer (DTC) genetic tests are marketed directly to the general public, usually via
the Internet. DTC genetic testing provides access to an individual’s genetic information, usually
without involving a health care professional.
3921_Ch07_187-204 05/06/14 11:00 AM Page 190
provider or genetic counselor, the individual may
make significant decisions about prevention or a
particular treatment that is based on incomplete
or inaccurate information (Genetics Home Refer-
ence, 2012; National Human Genome Research
Institute, 2013).
Disadvantages of Predictive
Genetic Tests
Nurses should understand the differences in the
types of genetic tests that families may consider and
the potential advantages or disadvantages of pre-
dictive genetic tests summarized in Box 7-2. Nurses
who participate in discussions about genetic testing
must maintain current knowledge on these tests, as
well as on new technology for testing and interpre-
tations of results.
Genetic tests have limitations that vary accord-
ing to the specific test. For some tests, not all per-
sons who want the test may qualify, which occurs
when their family history does not suggest that the
disease has a major genetic component, or where
the genetic mutation that causes the disease has
not been identified. For some tests, it is possible
that a result may be difficult to interpret. For some
conditions, genetic mutations have been discov-
ered that are associated with the disease in that
family. Because many genes may be associated
with one condition, or a number of different mu-
tations may be possible in a gene, it is often neces-
sary to test an affected family member first to try
to identify which gene is involved and which type
of mutation is causing the disease in that family.
A sample is taken from the affected person to de-
termine whether a genetic mutation can be iden-
tified that is associated with that disease. This may
not be possible if the affected person in the family
has passed away or if the affected person refuses to
undergo the genetic testing to help other family
members.
Another limit to genetic testing is the fact that
results may not be definitive. For example, a test
result of an infant screened for cystic fibrosis may
be in the positive range for a screening test. A pos-
itive screening test simply means, however, that a
diagnostic test is required to determine whether the
infant has the condition. It is important for parents
to understand that, in some infants, a diagnostic
test result can indicate that the infant has a genetic
condition and will need further evaluation and
treatment, and in other cases, subsequent tests will
be normal. When an infant has further evaluation,
and is found not to have the condition, the first test
result is sometimes referred to as a false positive,
or an out-of-range result that required further test-
ing. Parents who understand the reason for the re-
peated testing tend to experience less stress than
those who do not (Hewlett & Waisbren, 2006).
When a family receives an abnormal newborn
screening test result, it is crucial for the nurse to
help the family understand that abnormal results
from a screening test do not necessarily mean that the
child is ill or has the disease (Hewlett & Waisbren,
2006). The waiting period between the newborn
screening result and the diagnostic testing is known
Genomics and Family Nursing Across the Life Span 191
BOX 7-2
Potential Advantages and Disadvantages
of Predictive Genetic Tests
Potential advantages of testing include:
■ Opportunity to learn whether one has an increased
likelihood of developing an inherited disease; in those
who prefer certainty, this can help resolve feelings of
discomfort, even if the result shows the person has in-
herited the condition
■ Relief from worry about future health risks for a specific
disease if the test is negative
■ Information that can be used for making reproductive
decisions
■ Information to inform lifestyle choices (e.g., food
choices, smoking, alcohol use, contraceptive choice)
■ Information to guide clinical surveillance or manage-
ment of the condition
■ Information for other family members about their own
status
■ Confirmation of a diagnosis that has been suspected
(i.e., that early or nonspecific signs and symptoms are
due to a specific condition)
Potential disadvantages are that the test results may
provide:
■ A source of increased anxiety about the future
■ Guilt at having survived when others in the family are
affected, if the result is negative (“survivor’s guilt”)
■ Concern about potential discrimination based on
genetic test results
■ Regret about past life decisions (such as not having
children)
■ Changes in family attitudes toward the person who
has been tested (such as less reliance on them for
support)
3921_Ch07_187-204 05/06/14 11:01 AM Page 191
to be especially difficult for parents (Tluczek,
Koscik, Farrell, & Rock, 2005).
FAMILY DISCLOSURE OF GENETIC
INFORMATION
Communicating information about the genetic as-
pects of a condition to families at the time of diag-
nosis and over time is an important role for nurses
and other health care professionals (Gallo, Angst,
Knafl, Twomey, & Hadley, 2010). Having an ef-
fective partnership and communication between
health care professionals and families is essential to
the success of developing both collaborative and
therapeutic working relationships (Levetown &
American Pediatric Committeee, 2008). Nurses
work with families through a cascade of decisions
and information about the genetic disorder (Reid
Ponte & Peterson, 2008).
Gallo et al. (2010) describe four main themes
relative to how health care professionals share ge-
netic information with parents of children with a
genetic condition:
■ Sharing information with parents
■ Taking into account parental preferences
■ Understanding the condition
■ Helping the parents inform others about the
genetic condition
Sharing information with parents should be ini-
tiated at the time of diagnosis and then tailored
over time based on the parents’ particular needs,
the characteristics of the child’s condition, and the
environmental factors (Gallo et al., 2010). Impor-
tant roles of nurses in this process include reinforc-
ing the information to help parents understand the
condition, coordinating the patient’s care, educat-
ing parents on expectations, discussing potential
management of the care for their child at home,
and helping the parents to inform others about
their child’s genetic condition (Gallo et al., 2010).
Access to genetic information gained from ge-
netic testing, as well as from family history, raises
a host of questions for the family regarding confi-
dentiality that includes the following: who to tell,
what and when to tell them, and how much to
share. Nurses must maintain the confidentiality of
each family member’s genetic testing information.
It is completely up to the individual to determine
whether or not to reveal information about genetic
risks, testing, disease, or management. Results of
genetic tests are private, and in the United States,
they cannot be disclosed to other family members
without the tested person’s consent (U.S. Depart-
ment of Health and Human Services, 1996). In the
United States, the Health Insurance Portability and
Accountability Act (HIPAA) permits disclosures of
health information if there is an immediate and se-
rious threat to the person and if the disclosure
could reasonably lessen or prevent the threat (U.S.
Department of Health and Human Services, 1996).
In most cases, however, the choice of disclosure of
genetic information is an individual decision that is
made in the context of the family.
Discovery of health problems in more than one
family member should be accompanied by a dis-
cussion with family members regarding their un-
derstanding of risks for potentially inherited
disorders. Disclosure can be a challenging task, as
the person with the genetic mutation must decide
who to inform, what to say, and when to talk about
this finding (Gaff et al., 2007).
Family members may prefer to maintain pri-
vacy regarding their decision about predictive
testing, even within the family. This decision may
reflect an attempt to avoid disagreements within
the family, an attempt to protect others in the
family from sadness or worry, or an attempt to
prevent discrimination or bias. For example, peo-
ple who have predictive Huntington’s disease test-
ing may be reluctant to share this information
with their primary care provider. This reluctance
may be because they fear that any notation in their
medical record may be accessed by an employer
or insurance provider, which may lead to loss of
employment or insurance. Although laws have
been passed that prohibit insurance or employ-
ment discrimination based on a person’s geno-
type, some individuals may be concerned that
revealing their genotype may place them at risk
for discrimination (Penziner et al., 2008).
When one person in a family has a condition that
is caused by an alteration in a single gene, such as a
gene associated with hereditary breast or ovarian
cancer, the person with the mutation is asked to no-
tify others in the family that they too may have this
same DNA mutation. In general, the family mem-
bers themselves pass on this information, but occa-
sionally, with the consent of all concerned, direct
conversations can occur between the nurse and
other family members. Because families vary in
192 Families Across the Health Continuum
3921_Ch07_187-204 05/06/14 11:01 AM Page 192
their adaptability regarding health challenges, fam-
ilies vary in how they decide to share information
(McDaniel, Rolland, Feetham, & Miller, 2006).
Both individual and family relationship factors
can influence communication among family mem-
bers. Nurses should, therefore, have a good under-
standing of their patient’s personal beliefs about
sharing genetic risk information with family mem-
bers. Nurses work closely with the individual to
explore relationships with relatives to identify po-
tential areas of difficulty and provide support for
communication of accurate genetic information
(Wiseman, Dancyger, & Michie, 2010). The fam-
ily communication style may affect disclosure and
sharing of genetic information. For example, a
family with a disengaged communication pattern
may share affection for each other but actually
speak relatively infrequently with each other
(McDaniel et al., 2006). For families with this style
of communication and lack of closeness, sharing
information about one’s personal medical history
may be especially difficult (Stoffel et al., 2008). In
contrast, families with an enmeshed style of family
communication frequently talk with others in the
family about personal health matters (McDaniel et
al., 2006). Gender may influence the sharing of ge-
netic information with family members. Women
were noted to have more difficulty in sharing ge-
netic information with older parents, brothers, or
fathers (Patenaude et al., 2006). Men expressed
difficulty disclosing genetic information to all fam-
ily members (Gaff, Collins, Symes, & Halliday,
2005). Box 7-3 depicts an example of family com-
munication of genetic information.
Parents: To Tell or Not to Tell
Parents of a child with a genetic disorder take into
consideration what to tell their children about the
condition based on the developmental level of the
child and the child’s extent of interest in knowing
about the genetic condition. Thus, parents whose
children had a single gene disorder described shar-
ing genetic information with their children as an
unfolding process that was not a one-time occur-
rence but continued throughout childhood as their
cognitive stage of development progressed (Gallo,
Angst, Knafl, Hadley, & Smith, 2005).
Parents, usually, believe that they are the most ap-
propriate people to inform their children about ge-
netic risks. Still, when no current effective treatment
or cure exists, parents struggle with balancing “the
right” of individuals to know about their potential
genetic risks with their natural instinct as parents
to spare their children from undue anxiety (Tercyak
et al., 2007). In some cases, individuals delay telling
other adults in the family because they worry that
they will accidently say something to the child or
that they may be overheard by the child (Speice,
McDaniel, Rowley, & Loader, 2002).
Parents of children with genetic conditions may
choose not to share information because they have
concerns about school issues, obtaining health care
for their children, and insurability or employability
of their children. Parents worry that their child
could feel different from other children because of
food or activity restrictions, or visible signs of the
genetic condition (Gallo, Hadley, Angst, Knafl, &
Genomics and Family Nursing Across the Life Span 193
BOX 7-3
Family Communication of Genetic
Information
Brian, a 46-year-old man, is the oldest of three siblings.
He is married but has no biological children. Brian was
aware that his mother died of bowel cancer at the age of
38 years, and although this worried him, he hid his anxi-
ety from both friends and relatives. He never discussed
his mother’s death with his wife or siblings. Brian had
been experiencing abdominal pain for some months
when he collapsed at work one day and was taken to his
local hospital emergency department. He was found to
be anemic and suffering a bowel obstruction. A tumor
located near the hepatic flexure of the large colon was
removed successfully. Brian was informed that his family
and medical history indicated that it was likely he had in-
herited a mutation in an oncogene that predisposed him
to bowel cancer. He was advised to share this finding
with his siblings, and recommend that they seek advice
and screening for themselves. Brian was reluctant to dis-
cuss the issue with his siblings but did tell his wife. Brian
chose not to disclose this information to his siblings. Sev-
eral months later, at the encouragement of his wife, they
met with the cancer nurse to discuss the situation. The
cancer nurse helped Brian decide what information to
share with his siblings. They created a plan for how and
when to share the information. Subsequently, both
Brian’s sister and brother had genetic testing. Brian’s sis-
ter was found to carry the mutation. She was screened,
and she worked with the nurse to devise a plan to tell
her children about their possible risk when they reached
18 years of age.
3921_Ch07_187-204 05/06/14 11:01 AM Page 193
Smith, 2008). Nurses have a significant role in
helping parents decide what information to share
with their children about their genetic condition
based on their developmental level. Another role
of family nurses is helping parents determine how
much information to share with outside sources,
such as schools, day care, or employers, about their
child’s genetic condition.
Concealing Information: Family Secrets
Some families are quite open, whereas others choose
to keep genetic information a secret, even from
other immediate family members (Peters et al.,
2005). Families choose to keep genetic information
a secret for a variety of reasons. Sometimes informa-
tion is kept a secret out of a desire to protect other
family members. Some keep a secret because they
feel shame. Still other families may choose to keep
information secret because the exploration of ge-
netic inheritance may reveal other personal infor-
mation. For example, consider a family with four
sisters who want health advice because their father
has a form of familial colon cancer. In the course of
obtaining the family history, the mother confides to
the nurse that her husband is not the biological par-
ent of the oldest daughter, and that others in the
family do not know this history. In this situation, the
nurse recognizes that the oldest daughter does not
share the same risk for this disease as her sisters, but
the nurse would not be permitted to reveal that in-
formation to any family member without the
mother’s permission. This family secret can create
conflict for the nurse, because the lack of disclosure
might mean the eldest daughter is exposed to un-
necessary procedures, such as a colonoscopy (which
carries a risk for morbidity). The nurse would dis-
cuss the issue of risks for procedures with the mother
so that the she can consider all the information in
deciding to tell her daughter the family secret. The
mother would have to decide if the benefits of dis-
closure outweigh the distress the daughter may ex-
perience by learning about her parentage.
Family Reactions to Disclosure
of Genetic Information
Families are unique and respond to genetic discov-
eries differently. Even within the same family, fam-
ily members will respond differently. Some
members seek predictive testing to determine
whether they have inherited the genetic condition.
Others choose not to seek testing. Some members
react to genetic discoveries with grief, loss, and de-
nial. The nurse’s role is to support all family mem-
bers in their reactions and ultimate choices.
Children, regardless of age, may wonder if they
will have the same condition as their parent. For
example, this may be the case for teens who have a
parent or grandparent with Huntington’s disease,
an autosomal dominant condition. Guidelines do
not recommend predictive testing until a teen is old
enough to provide informed consent. Teens may
want to protect their parents from their concerns
and are reluctant to share their thoughts with their
parents (Sparbel et al., 2008). Thus, nurses should
offer the opportunity for them to ask questions and
discuss their concerns, including offering to facili-
tate a family discussion. Box 7-4 depicts a family
managing decisions about teenager.
Elders in the family often are keen to contribute
to genetic studies to help their offspring (Skirton,
194 Families Across the Health Continuum
BOX 7-4
Working With an Adolescent About Genetic
Testing
Susan is a 17-year-old young woman whose mother de-
veloped breast cancer at age 42 and had to have a dou-
ble mastectomy. She is now recovering from her surgery
and doing well. Susan’s maternal grandmother and one of
her maternal aunts died from breast cancer in their forties.
Susan’s mother chose to have genetic testing to learn
about the possible genetic cause of her breast cancer. The
test results revealed that she has a BRCA1 gene mutation,
which significantly increases a woman’s lifetime risk of de-
veloping breast cancer. At her annual health care appoint-
ment Susan tells the nurse about her family history of
breast cancer and that her mother has a BRCA1 gene mu-
tation. Susan says that she would like to know what her
risk is for inheriting this gene and that she would like to
have the genetic testing to find out if she carries the same
BRCA1 gene as her mother. She says that she is worried
about her younger sister too. She tells the nurse that she
does not want to worry her mother or family by talking
with them about her concerns. The nurse informs Susan
that she is free to express her concerns with her and her
physician and that they can talk with her about how best
to talk with her mother and express her concerns. She
also lets Susan know that when she is 18 she will be old
enough to provide informed consent to have genetic test-
ing for the BRCA1 mutation that her mother has. She rec-
ommends that when she is 18, she consider genetic
counseling with a genetic specialist to learn more about
her risk and the BRCA1 genetic testing.
3921_Ch07_187-204 05/06/14 11:01 AM Page 194
Frazier, Calvin, & Cohen, 2006) and serve as an in-
formation source of family history. Advances in ge-
nomics will make susceptibility testing for common
diseases of middle and old age (such as coronary ar-
tery disease or cancer) more common.
Family members possess beliefs about their own
risks and who in the family will develop a genetic
condition. These beliefs are termed preselection
(Tercyak, 2010). Preselection beliefs are often based
on the family’s previous experience. For example, if
only male relatives have been affected by an autoso-
mal dominant condition that could affect either sex,
female members in the family may believe they are
not at risk. Sometimes preselection beliefs are based
on the fact that the person thought to have inherited
the condition physically resembles the affected par-
ent or shares a physical characteristic (such as hair
color) with other affected relatives. A preselection
belief may influence the person’s self-image and
overall functioning. For example, those who believe
they will develop a condition may make different ca-
reer choices, avoid long-term relationships, or de-
cide not to have children. Box 7-5 depicts a case
study that demonstrates preselection beliefs.
DECISION TO HAVE GENETIC
TESTING
In some circumstances, family members may want to
know the likelihood that they will develop a condi-
tion in the future, which is referred to as either pre-
dictive or presymptomatic testing. Typically the physical
risk for undergoing genetic testing is minimal, but
not so for the emotional risk. The test results may
have a significant effect on a person emotionally, in-
fluence medical decisions, and result in discrimina-
tion. Undergoing genetic predictive testing requires
nurses to work with clients so that they make this de-
cision in a way that meets their specific needs, alert
to the nonphysical risks. Nurses involved with these
families should be able to identify the sources of
emotional distress and offer effective strategies to
help mediate distress, make informed decisions about
medical interventions, and handle possible discrimi-
nation (Williams et al., 2009).
Emotional Health
Family members seek or avoid genetic testing for
a variety of reasons. Some elect to know whether
or not they carry a mutation so they can reduce
their fear of the unknown, or make life choices,
such as having children. Some people decide not to
have predictive testing because they believe this
knowledge would increase their level of anxiety and
would prompt a constant watch for developing
symptoms (Soltysiak, Gardiner, & Skirton, 2008).
Test results mean different things in different sit-
uations, which makes these decisions to undergo
testing even more complex and multifaceted. For
example, a positive test for a BRCA1 or BRCA2
breast cancer mutation does not mean the individ-
ual has a 100% chance of developing breast cancer,
so taking precautionary measures requires weigh-
ing costs and benefits. In other situations, such as
in the case of Huntington’s disease, if an individual
carries the autosomal dominant condition, he will
develop the disease. Some choose not to be tested
for fear that they would lose hope.
Even adjustment to a negative result—meaning
that a person does not have the genetic pattern of
Genomics and Family Nursing Across the Life Span 195
BOX 7-5
Preselection Beliefs
John is a 21-year-old young man who has recently grad-
uated from college and is trying to decide what career he
wants to pursue. John has a family history of Hunting-
ton’s disease (HD) on his mother’s side. His mother’s
brother and her father have both passed away from HD.
His mother, age 45, is currently in good health. John is
very worried that he will develop HD because it is in his
mother’s family. John makes an appointment with his
health care provider so that he can talk with him about
his concerns. As the nurse is taking his vital signs, John
tells her about his concerns that he will develop HD. He
says that he doesn’t know if his mother has it and he is
worried because it seems to be in the males of the fam-
ily, and he looks like his uncle who died from HD. John
says that he would like to go to medical school but he is
scared that he will develop HD when he is young and it
will greatly affect his career. He also tells the nurse that
he has a girlfriend to whom he is very attached, but he is
afraid to consider getting married because he does not
want to put her through the experience of losing him to
HD. He says that he has not even told her about his
family history. The nurse tells John that she understands
his concerns and encourages John to talk with his doctor
about how he can learn more about his risk for HD. She
tells him that he could consider having genetic counsel-
ing to talk further about his risks and available genetic
testing for HD to learn more. John thanks her for her
support and suggestions and says that he will surely talk
with his doctor further about his concerns and options.
3921_Ch07_187-204 05/06/14 11:01 AM Page 195
the disease—can be difficult. Some people who find
that they are not at risk of developing a genetic
condition experience “survivor guilt,” which can be
described as a sense of self-blame or remorse felt
by a person who, in this case, will not develop a
condition that others in the family will develop.
Evidence exists that when individuals have a ge-
netic test that indicates that they will develop a
condition, other family members may rely on them
less than previously, in an emotional sense. These
individuals experience feelings of loss of place in
the family well before developing disease symp-
toms (Williams & Sobel, 2006). Some experience
a deep sense of grief and loss of a potential future.
Medical Decisions
Physicians and nurse practitioners are in an excel-
lent position to work closely with clients in making
medical decisions about their health based on the
individual’s genetic and genomic information.
These health care providers have the ability to re-
fine and personalize medical care that is based on
the client’s genetic makeup. For example, there is
an increased probability that treatment outcomes
will result in fewer adverse effects from medica-
tions, such as pain management being determined
on the basis of whether a client is a known fast me-
tabolizer or slow to metabolize certain kinds of
drugs. But just because there are many tests avail-
able does not mean that the best option is for the
client to have genetic testing done. Advanced prac-
tice nurses need to work closely with the individual
and family in deciding to have genetic testing that
would include what the test would show, how spe-
cific the results might or might not be, and explore
what options are possible based on the outcome of
the testing.
After conferring with the health care provider,
some clients may not choose to have genetic test-
ing at that time. Instead, these clients may elect to
undergo regular checkups and screenings, such as
more frequent mammograms. In contrast, when a
person has genetic testing and tests positive for a
specific disease, a cascade of decisions then befalls
that person, including and involving preventive or
prophylactic treatments, degrees of treatment,
risks of treatment, and benefits of treatment. For
example, a woman may decide to undergo surgery,
such as sterilization, so as to not pass on to off-
spring a condition such as cystic fibrosis or sickle
cell anemia; or someone with positive results for
BRCA1 breast cancer mutation may elect to have
a bilateral mastectomy.
Discrimination
Even though there is little evidence that genetic dis-
crimination is a current problem (Feldman, 2012),
many individuals choose not to undergo genetic
testing because they fear discrimination. For exam-
ple, a person may have concerns that she may be by-
passed for promotion if it was known she tested
positive for a medical condition. The Genetic In-
formation Nondiscrimination Act (GINA) of 2008
protects individuals from discrimination initiated by
an employer or health insurance company.
Under GINA, insurers may not use genetic in-
formation to set or adjust premiums, deny cover-
age, or impose preexisting conditions, and they
may not require any genetic testing. Unfortunately,
the GINA law does not apply to employers with
less than 15 employees and it does not include pro-
tection against discrimination when an individual
seeks to obtain life insurance, short-term disability
insurance, or long-term care insurance. GINA does
not protect members of the military, veterans, fed-
eral employees, or the Indian Health Service. Each
of these sectors of society is protected against dis-
crimination by other laws and statutes.
Under GINA, an employer may not make any
decisions about hiring, firing, promoting or pay or
assignment based on any genetic information. The
Patient Protection and Affordable Care Act of 2010
also prohibits denial of insurance coverage based
on genetic information. The GINA law is signifi-
cantly more stringent and specific in preventing
discrimination by employers and health care insur-
ance agencies (Feldman, 2012), however, because
it defines genetic information as including medical
history.
ROLES OF THE NURSE
When there exists a genetic risk, nurses, together
with others on the health care team, have two
major responsibilities: (1) to help families under-
stand that the risk is present, and (2) to help family
members make decisions about management or
surveillance. In every case, the nurse’s role is to
support families to make decisions that are most
196 Families Across the Health Continuum
3921_Ch07_187-204 05/06/14 11:01 AM Page 196
appropriate for their particular circumstances, cul-
tures, and beliefs (International Society of Nurses
in Genetics, 2010). This section suggests ways that
nurses should review their own beliefs and values
when working with families. It covers how to con-
duct a risk assessment and genetic family history,
the importance of working with a couple in precon-
ception education, and the role of nurses as genetic
information managers.
Personal Values: A Potential Conflict
Nurses must become aware of cultural values that
differ from their own family cultural values. Cul-
tural awareness allows nurses to tailor their prac-
tices to meet the needs of the family. Box 7-6
demonstrates how a nurse who does not under-
stand a family’s cultural values could contribute to
a poor outcome.
It is a difficult emotional situation when nurses’
personal values conflict with those of families. One
example of this type of conflict occurs when the
nurse personally does not agree with the family de-
cisions relative to the potential risks of having a
child who is genetically predisposed to having a ter-
minal disease. It is unethical, however, for nurses to
try to influence the decisions of the family or family
members because of their own personal views.
Another type of conflict occurs when opinions
within the family vary. In this type of situation, the
role of the nurse is to facilitate family members ex-
pressing their views. In clinical genetics, more than
one family member may be involved in decision
making, and nurses should respect each person’s
autonomy.
Conducting a Genetic Family History
All nurses should be able to conduct a risk assess-
ment that includes obtaining a genetic family his-
tory (Consensus Panel, 2008). As described in
Chapter 4, a genogram collects useful information
about family structure and relationships. Nurses
can use a three-generation family pedigree to pro-
vide information about a potential genetic inheri-
tance pattern and recurrence risks. The genetic risk
assessment enables nurses to identify those family
members who may be at risk for disorders with a
genetic component so that they can be provided
appropriate lifestyle advice, screening recommen-
dations, and possibly reproductive options. Infor-
mation on standardized pedigree symbols and the
construction of a genetic family pedigree is avail-
able to the public through the U.S. Surgeon Gen-
eral’s Family History Initiative (U.S. Department
of Health and Human Services, 2005), and re-
sources are available through the National Genet-
ics Education and Development Centre (2008).
The purpose of drawing the family tree using a
genetic family pedigree is to enable medical infor-
mation to be presented in context of the family
structure. Obtaining a genetic family history in this
systematic manner helps ensure inclusion of all
critical information in the analysis (Skirton, Patch,
& Williams, 2005). The process of obtaining a de-
tailed health history and causes of family deaths is
as follows:
■ Start with the client
■ Client’s immediate family members
■ Client’s mother’s side of the family
■ Client’s father’s side of the family
■ Relatives who have died, including their
cause of death
Relatives who are not biologically related, such
as those joining the family through adoption or
marriage, should also be noted with the appropriate
Genomics and Family Nursing Across the Life Span 197
BOX 7-6
Cultural Awareness
Kate is a genetic nurse working in a pediatric clinic for
children with inherited metabolic conditions. She was
scheduled to see a family whose son had a rare inher-
ited metabolic disorder to discuss the parents’ future re-
productive options, including prenatal diagnosis. When
the family entered the room, she noted with surprise
that the parents and the child were accompanied by
both sets of grandparents. She quickly arranged for more
chairs to be brought into the room. Kate was quite dis-
concerted to find that the paternal grandfather repeat-
edly answered questions that were directed to the
parents, and she continued to address the parents. Even-
tually, the child’s father explained that, according to his
culture, the oldest male relative on the father’s side was
responsible for making the decision that would affect the
family; therefore, it was critical that the grandfather be
fully involved in all discussions. While reflecting with her
mentor, Kate realized that, in the future, she would ask
the family at the beginning of the family conference to
share any specific cultural needs she should know about
in order to help meet their family needs.
3921_Ch07_187-204 05/06/14 11:01 AM Page 197
pedigree symbol. The reason that relatives who are
not biologically related are noted in a pedigree with
a special symbol is to identify them as family mem-
bers who are not at risk for passing on or inheriting
harmful genes from the family they have joined.
Obtaining a family genetic history is a nursing
skill that requires technical expertise and knowl-
edge of what needs to be asked, as well as sensi-
tivity to personal or distressing topics and an
awareness of the ethical issues involved. Box 7-7
outlines the components of a genetic nursing as-
sessment. Information given by patients is con-
sidered part of their personal health record and
should be treated as personal and private infor-
mation (U.S. Department of Health and Human
Services, 1996, 2005).
Drawing the genetic family pedigree or family
tree for at least three generations often provides im-
portant data about the potential inheritance pattern.
When a condition affects both male and female
members, and is present in more than one genera-
tion, a dominant condition is suspected (Fig. 7-1).
Conditions that affect mainly male relatives, with no
evidence of male-to-male transmission, increase sus-
picion of an X-linked recessive condition (Fig. 7-2).
When more than one child is affected of only one
set of parents, it may be evidence of an autosomal re-
cessive condition (Fig. 7-3).
Nurses should not assume that a condition is ge-
netic merely because more than one family member
has it. Family members who are subject to similar
environmental influences may have similar condi-
tions without a genetic basis. One such example is
a family with a strong history of lung cancer. Bob,
a 62-year-old man, was affected by lung cancer. His
two brothers and father all died of lung cancer. Bob
expressed deep concern about having a genetic pre-
disposition that he could pass on to his grandsons.
The family history revealed that Bob’s father and
every male member of his family worked under-
ground as coal miners from the age of 14 years. In
addition, they all smoked at least 20 cigarettes a day
from when they were teenagers. None of the
women smoked, nor did they work in the mines,
and none developed lung cancer. In this family, the
cancer could likely be attributed to environmental
rather than inherited causes.
198 Families Across the Health Continuum
BOX 7-7
Genetic/Genomic Nursing Assessment
A genetic nursing assessment includes the following
information:
■ Three-generation pedigree using standardized symbols
■ Health history of each family member
■ Reproductive history
■ Ethnic background of family members (as described by
the family)
■ Documentation of variations in growth and develop-
ment of family members
■ Individual member and family understanding of causes
of health problems that occur in more than one family
member
■ Identification of questions family members have about
potential genetic risk factors in the family
■ Identification of communication of genetic health infor-
mation within the family
Person with autosomal
dominant condition
FIGURE 7-1 Pedigree of autosomal dominant genetic condition.
3921_Ch07_187-204 05/06/14 11:01 AM Page 198
Preconception Assessment
and Education
Preconception counseling is an intervention that
includes providing information and support to in-
dividuals before a pregnancy to promote health and
reduce risks (Walfisch & Koren, 2011). It is ideal
when a family has the opportunity to discuss diffi-
cult genetic decisions before a pregnancy. During
a pregnancy, the emotional ties to the existing fetus
may complicate the decision-making process for
the parents. Preconception counseling enables a
couple to explore options without time pressures.
One aspect of preconception education is con-
ducting a health risk profile that includes family
history, prescription drug use, ethnic background,
occupational and household exposures, diet, spe-
cific genetic disorders, and habits such as smoking,
alcohol, or street drug use. When nurses identify
information that may present a health risk in future
Genomics and Family Nursing Across the Life Span 199
FIGURE 7-2 Pedigree of X-linked recessive condition.
Heterozygote (carrier)
of X-linked recessive
condition
Male with X-linked
recessive condition
Carrier (heterozygote) of
autosomal recessive disorder
Person affected with autosomal
recessive disorder
FIGURE 7-3 Pedigree of autosomal recessive genetic condition.
3921_Ch07_187-204 05/06/14 11:01 AM Page 199
offspring, they should explore whether the woman
or family wants a more extensive evaluation from a
genetic specialist. Box 7-8 provides an example of
preconception education for a couple concerned
about genetic risks for offspring.
In addition to identifying inherited conditions,
preconception counseling includes education re-
garding other risk factors that could change the
outcome of a pregnancy. During preconception
counseling, family nurses explain the importance,
for instance, of taking an adequate amount of folic
acid, one of the B vitamins, which is known to de-
crease the number of babies born with neural tube
defects (NTDs) (Centers for Disease Control and
Prevention, 2006). Box 7-9 provides more infor-
mation about NTDs.
Risk Assessment in Adult-Onset
Diseases
Genetic history taking is important in the adult
population to assess for risk factors that are perti-
nent to common diseases, such as cancer and coro-
nary heart disease. The risk assessment is based on
the genetic family pedigree, but additional genetic
or biochemical testing may be used to clarify
the potential risk to each individual. To ensure pri-
vacy, health care providers must obtain consent
from all living relatives before accessing their
medical records and confirming relevant medical
history. Family members who are seeking infor-
mation are advised of their risks and options for
clinical screening and follow-up. One example is
the assessment of risk for cancer when there is a
strong history of cancer in the family (Gammon,
Kohlmann, & Burt, 2007). Individuals who find
through counseling and testing that they have
an increased risk for cancer may experience psy-
chological difficulties (Kenen, Ardern-Jones, &
Eeles, 2006). Nurses must explore feelings of
grief and anxiety about the future, as well as be-
liefs about the inheritance pattern. Providing
explanations enables families to understand the
information and helps them learn possible op-
tions to reduce the risk for cancer in their family
members.
200 Families Across the Health Continuum
BOX 7-8
Preconception Education
Jay and Sara are college students who are planning to be
married. Both are of Ashkenazi Jewish ancestry. Although
both have heard about Tay-Sachs disease, and the avail-
ability of carrier testing, neither has had the carrier test.
When Sara visited the student health office, she talked
with the nurse about her fears that she may not be able
to have healthy babies. She knew that Tay-Sachs disease,
a degenerative neurological condition, is more common
in Ashkenazi Jewish families, and that no treatment will
alter the course of the disease. Sara was interested in
learning more about the carrier test. The nurse offered to
refer Sara to a genetics specialist, who would help the
couple explore the following childbearing options:
■ Decide to have or not have biological children
■ Have a pregnancy with no form of genetic testing
■ Have a preimplantation genetic diagnosis
■ Have a pregnancy and have a prenatal genetic diagno-
sis with an option to terminate an affected fetus
■ Have a pregnancy using a donor gamete from a non-
carrier donor
■ Adopt a child
BOX 7-9
Folic Acid Recommendations to Prevent
Neural Tube Defects
In 1992, the U.S. Public Health Service recommended
that all women capable of becoming pregnant take
0.4 mg/400 g folic acid daily, which is the amount of
folic acid in most multivitamins. Although a daily intake
of folic acid does not completely rule out the possibility
that an infant will have neural tube defects (NTDs), stud-
ies have reported an 11% to 20% reduction in cases of
anencephaly and a 21% to 34% reduction in cases of
spina bifida since this recommendation was issued
(Mosley et al., 2009).
3921_Ch07_187-204 05/06/14 11:01 AM Page 200
Increasingly, women with a family history of
breast or ovarian cancer, or both, are seeking to re-
duce their risks for these conditions. This is espe-
cially true for women whose own mothers died at
a relatively young age from breast or ovarian can-
cers (van Oostrom et al., 2006). All women have a
risk for breast cancer (a lifetime risk of about 1 in
11 in the U.S. population) and may be offered
mammography screening according to the stan-
dards of care or regional health policy (National
Institute for Clinical Excellence, 2006). For women
with a genetic family history that is consistent with
familial breast and ovarian cancer, genetic and fa-
milial cancer specialists should discuss earlier and
more frequent screening.
With appropriate treatment, some health prob-
lems with a major genetic component may im-
prove or at least remain stable. But many genetic
conditions lead to increasing loss of health and
function throughout the person’s life span. These
genetic conditions require more and more com-
plex care from both health care providers and the
family. In the chronic phase of a genetic condi-
tion, individuals and the family not only come to
terms with the permanent changes that come with
the onset of illness symptoms (Biesecker & Erby,
2008; Truitt, Biesecker, Capone, Bailey, & Erby,
2012), but also must adapt their family routines
and roles, and locate needed resources to meet
changing health care needs.
Providing Information and Resources
An essential nursing competence includes the
need for nurses to be able to identify resources
that are useful, informative, and reliable for pa-
tients and families. Knowledge of genetics is rap-
idly changing, and Web-based resources may
provide the most current information. Families
value the recommendations of health profession-
als on suitable resources of information (Skirton
& Barr, 2008). It is the role of nurses to ensure
that recommended Web sites include relevant and
evidence-based information. Patients and families
have a need for psychosocial and medical infor-
mation about genetics; therefore, any information
that is prepared for distribution should include
material on both types of needs (Lewis, Mehta,
Kent, Skirton, & Coviello, 2007).
Evaluation of Genomic and Genetic
Nursing Interventions
Genomics and genetics are relatively new fields
in nursing, but some work has assessed the value
of genetic services, including nursing input, for
patients and their families. Researchers con-
ducted a study to define nursing outcomes rela-
tive to genetics in both the United States and the
United Kingdom (Williams et al., 2001). The
views of nurses indicated that enhancing patient
knowledge of the disease and the genetic risks as-
sociated with the disease were important aspects
of care. Nurses also believed that offering families
psychosocial support was an integral part of their
practice. In Skirton’s study (2001), patients re-
ported that they gained peace of mind from the
care they received, and that increasing their
knowledge about the condition, being treated as
an individual, and having a warm relationship
with the health professionals caring for them
were important to the overall outcome of the
consultation. Nurses should aim not only to be
knowledgeable about genomics but also provide
individualized care, and address the needs and
specific agendas of each family. Box 7-10 provides
Genomics and Family Nursing Across the Life Span 201
BOX 7-10
Evaluation of Nursing Intervention
Fiona is a 5-year-old child who is attending kindergarten.
Her teacher is concerned that she does not appear to be
progressing as well as expected, and asks the school nurse,
Cindy, to check her hearing. Cindy arranges for Fiona’s par-
ents to bring her for a hearing test. She asks Fiona’s mother
about her medical history; the mother says she has always
been a well child and has not had any ear infections but
has developed some “funny patches” on her skin. They
have not caused a problem, but the mother has wondered
what they are and if they could turn cancerous. Cindy
checks these and notes that they seem to be café-au-lait
patches—small, pale brown pigmented areas of the skin.
She reassures the parents that the café-au-lait patches are
not harmful but could indicate an underlying cause for
Fiona’s slight learning problems. She draws a genetic family
pedigree or family tree (Fig. 7-4) and notes that Fiona’s
(continued)
3921_Ch07_187-204 05/06/14 11:01 AM Page 201
an example of a nurse’s evaluation of interventions
with a family whose child has a genetic condition.
Although it is not possible for health profession-
als to have current knowledge about every condi-
tion, nurses exhibit competence in this area by
having an awareness of their limitations, being
open to discussion, finding appropriate resources,
and referring to specialists when required. It is es-
sential that nurses working in all types of settings
be prepared with an adequate knowledge base to
explain the basis and implications of genetics and
genomics.
SUMMARY
■ Families share both social and biological ties.
Identifying biological risk factors is an essen-
tial component of professional nursing prac-
tice, and a nursing assessment is incomplete
without identifying biological factors that
may place individuals or their offspring at
risk for genetic conditions.
■ Nurses providing care to families across all
health care settings and throughout the life
202 Families Across the Health Continuum
BOX 7-10
Evaluation of Nursing Intervention—cont’d
father and his mother (Fiona’s paternal grandmother) had
unusual skin lumps, but no other medical problems.
When the pediatrician sees the family, she measures
Fiona’s head circumference and examines her skin. She
confirms that the skin marks are café-au-lait patches and
that Fiona has eight of them. Fiona’s head circumference
is larger than average, on the 97th percentile for her age.
A diagnosis of neurofibromatosis type 1 is made. The pe-
diatrician explains that this is a genetic condition, but that
it could have arisen for the first time in Fiona or may have
been inherited from one of her parents. Neither parent is
aware of the condition in the family. The pediatrician ex-
amines both parents and finds that Fiona’s father has a
large head circumference and has several raised lumps
on the skin, called neurofibromas. He tells the pediatrician
he needed extra help with math at school, but he finished
college and works teaching French. He has never been
concerned about the lumps because his own mother had
dozens of them, and apart from having one removed be-
cause her shoe was rubbing against it, they did not cause
her a problem.
The pediatrician is aware that children with this condi-
tion may have learning problems. She recommends that
Fiona be evaluated to identify whether Fiona would bene-
fit from extra help at school. As high blood pressure and
malignancies can occur as a result of the condition, she
also makes arrangements for Fiona and her father to have
an annual checkup. Fiona’s brother, James (9 years old),
is also examined but has no signs of the condition and
does not require any further assessment.
When Cindy is informed of the diagnosis, she helps
the family to identify reliable sources of information on
the Web and provides Fiona’s parents with information
about neurofibromatosis organizations.
FIGURE 7-4 Genetic pedigree: Fiona’s family tree.
Multiple skin lumps
Edna
64 yr
Died at 72 yr
of stroke
Multiple skin lumps,
needs help with
math at school
Well
Appendectomy,
gets migraines
Learning problems,
multiple café-au-lait
patches
Maria
36 yr
Jim
36 yr
James
9 yr
Fiona
5 yr
Matthew
3921_Ch07_187-204 05/06/14 11:01 AM Page 202
span must maintain current knowledge of ge-
nomic aspects of health and risks for illness
to assist families in obtaining information
and further evaluation if needed.
■ Nurses work with families on assessment,
identification of issues influencing family
members’ health, facilitating appropriate re-
ferrals, and evaluating the effect of these ac-
tivities on the family’s health and well-being.
■ Family values, beliefs, and patterns of com-
munication are integral components of how
families cope with and respond to family
members with medical conditions that have a
genetic component.
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205
Family Health Promotion
c h a p t e r 8
Yeoun Soo Kim-Godwin, PhD, MPH, RN
Perri J. Bomar, PhD, RN
C r i t i c a l C o n c e p t s
■ Family health promotion refers to activities that families engage in to strengthen the family unit and increase family
unity and quality of family life.
■ Health promotion is learned within families, and patterns of health behaviors are formed and passed on to the next
generation.
■ A major task of the family is to teach health maintenance and health promotion.
■ The role of the family nurse is to help families attain, maintain, and regain the highest level of family health possible.
■ Family health promotion is the by-product of family interactions with factors outside the home and internal family
processes: microsystem, mesosystem, exosystem, and macrosystem.
■ Positive, reinforcing interaction between family members leads to a healthier family lifestyle.
■ Different cultures define and value health, health promotion, and disease prevention differently. Clients may not
understand or respond to the family nurses’ suggestions for health promotion because the suggestions conflict with
their health beliefs and values.
■ Family health promotion should become a regular part of taking a family history and a routine aspect of nursing care.
■ A primary goal of nursing care for families is empowering family members to work together to attain and maintain
family health; therefore, family health promotion should focus on strengths, competencies, and resources.
Fostering the health of the family as a unit and
encouraging families to value and incorporate
health promotion into their lifestyles are essential
components of family nursing practice. Family
health promotion refers to the activities that fami-
lies engage in to strengthen the family as a unit.
Family health promotion is defined as achieving
maximum family well-being throughout the fam-
ily life course and includes the biological, emo-
tional, physical, and spiritual realms for family
members and the family unit (Fiese & Everhart,
2011; Kim-Godwin & Bomar, 2010). Health pro-
motion is learned within families, and patterns of
health behaviors are formed and passed on to the
next generation. Families are primarily responsi-
ble for providing health and illness care, being a
role model, teaching self-care and wellness be-
haviors, providing for care of members across
their life course and during varied family transi-
tions, and supporting each other during health-
promoting activities and acute and chronic
illnesses. A major task of families is to make
3921_Ch08_205-236 05/06/14 11:03 AM Page 205
efforts toward health maintenance and health
promotion, regardless of age. For families, main-
taining health and well-being is a collective effort
whereby routines are established, relationships
are formed that foster health in others, and qual-
ity of life is promoted when better health is expe-
rienced by multiple members of the household
(Fiese & Everhart, 2011).
One of the major functions of the family is to
provide health care for its members, including how
to promote healthful lifestyles among the family
members and the way the family functions together
as a whole.
The purpose of this chapter is to introduce the
concepts of family health and family health promo-
tion. The chapter presents models to represent
these concepts, including the Model of Family
Health, Family Health Model, McMaster Model
of Family Functioning, Developmental Model of
Health and Nursing, Family Health Promotion
Model, and Model of the Health-Promoting Fam-
ily. The chapter also examines internal and external
factors through a lens of the bioecological systems
theory that influence family health promotion,
family nursing intervention strategies for health
promotion, and two family case studies demon-
strating how different theoretical approaches can
be used for assessing and intervening in the family
for health promotion.
WHAT IS FAMILY HEALTH?
Definitions of family health have evolved from
anthropological, biopsychosocial, developmental,
family science, cultural, and nursing paradigms.
The concept of family health is often used inter-
changeably with the terms family functioning,
healthy families, resilient families, and balanced families
(Alderfer, 2011; Kaakinen & Birenbaum, 2012;
Walsh, 2006, 2011a). Family scientists define
healthy families as resilient (Black & Lobo, 2008),
and as possessing a balance of cohesion and adapt-
ability that is facilitated by good communication
(Smith, Freeman, & Zabriskie, 2009). According
to Black and Lobo (2008), family resilience factors
include a positive outlook, spirituality, family
member accord, flexibility, communication, finan-
cial management, time together, mutual recre-
ational interests, routines and rituals, and social
support (p. 38).
Family therapy definitions of family health often
emphasize optimal family functioning and freedom
from psychopathology (Goldenberg & Goldenberg,
2007; McGoldrick, Gerson, & Petry, 2008). Fur-
thermore, within the developmental framework,
healthy families complete developmental tasks at
appropriate times (Carter & McGoldrick, 2005;
Duval & Miller, 1985; McGoldrick, Carter, &
Garcia-Preto, 2011).
Other definitions of family health focus on the
totality, or gestalt, of the family’s existence, and in-
clude the internal and external environment of the
family. The health of a family is best described in
interactional traits for optimal growth, function-
ing, and well-being of the family as a whole (Black
& Lobo, 2008). A holistic definition of family health
encompasses all aspects of family life, including in-
teraction and health care function. A healthy fam-
ily has a sense of well-being. Different aspects
of family functioning that nurses can assess or help
promote to encourage overall family health care
functions include family nutrition, recreation,
communication, sleep and rest patterns, problem
solving, sexuality, use of time and space, coping
with stress, hygiene and safety, spirituality, illness
care, health promotion and protection, and emo-
tional health of family members (Alderfer, 2011;
Novilla, 2011).
206 Families Across the Health Continuum
For the purposes of this chapter, family health
is a holistic, dynamic, and complex state. Family
health is more than the absence of disease in
an individual family member or the absence of
3921_Ch08_205-236 05/06/14 11:03 AM Page 206
dysfunction in family dynamics. Rather, it is
the complex process of negotiating and solving
day-to-day family life events and crises, and pro-
viding for a quality life for its members (Novilla,
2011). Table 8-1 lists the characteristics of
healthy families, illustrating how families can
promote health.
COMMON THEORETICAL
PERSPECTIVES
Many models and theories are applicable to family
health and family health promotion. This section
introduces a variety of models or views of family
health and family health promotion followed by
selected models:
■ Family Health Model
■ McMaster Model of Family Functioning
■ Developmental Model of Health and
Nursing
■ Family Health Promotion Model
■ Model of the Health-Promoting Family
Models of Family Health
Building on Smith’s (1983) models of health and
illness, Loveland-Cherry and Bomar (2004) suggest
Family Health Promotion 207
Table 8-1 Characteristics of Healthy Family
Unity
Commitment
Has a sense of trust traditions.
Teaches respect for others.
Exhibits a sense of shared responsibility.
Affirms and supports all of its members.
Flexibility
Ability to Deal With Stress
Displays adaptability.
Sees crises as a challenge and opportunity.
Shows openness to change.
Grows together in crisis.
Seeks help with problems.
Opens its boundaries to admit and seek help.
Communication
Positive Communication
Communicates well and listens to all members.
Fosters family table time and conversation.
Shares feelings.
Displays nonblaming attitudes.
Is able to compromise and disagree.
Agrees to disagree.
Time Together
Shares family rituals and traditions.
Enjoys each other’s company.
Shares leisure time together.
Shares simple and quality time.
Spiritual Well-Being
Encourages hope.
Shares faith and religious core.
Teaches compassion for others.
Teaches ethical values.
Respects the privacy of one another.
Appreciation and Affection
Cares for each other.
Exhibits a sense of humor.
Maintains friendship.
Respects individuality.
Has a spirit of playfulness/humor.
Interacts with each other has a balance in the interactions.
Source: Modified from Kaakinen, J. R., Gedaly-Duff, V., Coehlo, D. P., & Hanson, S. M. H. (Eds.). (2010). Family health
care nursing: Theory, practice and research (4th ed.). Philadelphia, PA: F. A. Davis; Olson, D. H. L., & Defrain, J.
(2003). Marriage and the family: Diversity and strengths (4th ed.). New York: McGraw-Hill; and Psychological
Studies Institute. (2004, September 15). New study identifies specific behaviors linked to family health. Physician
Law Weekly. Retrieved from http://www.newsrx.com/newsletters/Mental-Health-Law-Weekly/2004-08-
18/091320043331272MHL.html
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that there are four views toward or philosophies of
family health:
1. Family Health—Clinical Model. The family
unit is viewed from this perspective. The
family is healthy if its members are free of
physical, mental, and family dysfunction.
2. Family Health—Role-Performance Model. This
view of family health is based on the idea
that family health is the ability of family
members to perform their routine roles and
achieve developmental tasks.
3. Family Health—Adaptive Model. In this view,
families are healthy if they have the ability
to change and grow and possess the capacity
to rebound quickly after a crisis.
4. Family Health—Eudaimonistic Model. Profes-
sionals who use this view as their philoso-
phy of practice focus on a holistic approach
to family care to maximize the family’s
well-being and self-actualization in order
to support the entire family and individual
members in reaching their maximum health
potential.
Table 8-2 reveals how the four models of family
health define “family health.” Rather than being
separate, Smith (1983) suggests that the four views
can be viewed as a continuum with the person (or
family), going back and forth depending on the cir-
cumstances and life events. According to Loveland-
Cherry and Bomar (2004), these family health
models (views) are useful in three ways: (1) they
provide frameworks for understanding the level of
health that families are experiencing; (2) they help
design interventions to assist families in maintain-
ing or regaining good health, or in coping with
illness; and (3) the specific model of family health
can facilitate organization of the family nursing
literature and to categorize family research.
Family Health Model
Based on family health studies with Appalachian
families (Denham 1999a, 1999b, 1999c), and a
broad base of literature and existing research about
family health, Denham (2003a) has proposed the
Family Health Model. Family health is viewed as a
process over time of family members’ interactions
and health-related behaviors. Denham (2011) de-
fines family health as a complex phenomenon com-
prised of diverse members, systems, interactions,
relationships, and processes that hold the potential
to maximize well-being, the household production
of health, and contextual resources (p. 900). The
model emphasizes the biophysical, holistic, and
environmental factors that influence health.
In her Family Health Model, Denham (2003a,
2003b) suggests that family health routines offer
the means of connecting with health promotion.
Family routines are behavior patterns related to
events, occasions, or situations that are repeated
with regularity and consistency. Family routines
have been identified as key structural aspects of
family health that can be assessed by nurses, pro-
vide a focus for family interventions, and have
potential for measuring health outcomes (2003a).
Routines supply information about behaviors and
208 Families Across the Health Continuum
Table 8-2 Models of Family Health
Model Definition of Family Health
Clinical model
Role-performance model
Adaptive model
Eudaimonistic model
Lack of evidence of physical, mental, social disease or deterioration, or dysfunction of the family
system.
Ability of the family system to conduct family functions effectively and to achieve family
developmental tasks.
Family patterns of interaction with the environment characterized by flexible, effective
adaptation or ability to change and grow.
The most comprehensive view of health, a holistic view. It includes the ongoing provision of
resources, guidance, and support for realization of the family’s maximum well-being, self-
actualization, and potential throughout the family life span.
Source: Modified from Bomar, P. J. (2004). Introduction to family health nursing and promoting family health. In
P. J. Bomar (Ed.), Promoting health in families: Applying family research and theory to nursing practice (3rd ed.,
pp. 3–37). Philadelphia, PA: WB Saunders.
3921_Ch08_205-236 05/06/14 11:03 AM Page 208
their predictability, member interactions, family
identity, and specific ways families live. Denham
(2003a) makes the following propositions about
family health routines (p. 191):
■ Families that tend toward moderation in
family health routines are healthier than
families who are highly ritualized and
those who lack rituals.
■ Families with clearer ideas about their goals
are more likely to accommodate health
needs effectively through their family
routines than families who are less certain
about their goals.
■ Families and individuals are more likely to
accommodate changes related to health
concerns when family routines are sup-
ported over time by embedded contextual
systems than families whose routines are
not supported.
■ Families with routines that support individ-
ual health care needs are more likely to
achieve positive care outcomes in an indi-
vidual with health concerns than families
who do not have routines that support the
needs of family members with health
concerns.
■ Children who are taught routines in the
home and are supported by the embedded
context are more likely to practice health
routines in the home than those not sup-
ported by the embedded context. Embedded
context is defined as “the ecological environ-
ments and nested relationships that affect the
family health over the life course” (p. 277).
Denham lists the diverse types of routines, in-
cluding individual routine, family routine, family
health routine, family ritual, family tradition, and
family celebration (Denham, 2003a, 2011). Health
routines are described as interactions affected by
biophysical, developmental, interactional, psychoso-
cial, spiritual, and contextual realms, with implica-
tions for the health and well-being of members and
family as a whole. Kushner (2007) has said that
health routines are the means by which family mem-
bers deal with everyday health needs in the house-
hold context, the way that they teach children health
behaviors, and the way they support stress manage-
ment. In the Family Health Model, Denham (2003a)
identifies six categories of family health routines.
See Table 8-3.
McMaster Model of Family Functioning
The health of a family is best described as the in-
teractional traits of optimal growth, functioning,
and well-being of the family as a whole (Black &
Lobo, 2008). The McMaster Model of Family
Functioning (MMFF) identifies the elements of the
family group and the patterns of transactions
among family members that have been found to
distinguish between healthy and unhealthy fami-
lies. The model specifies six domains of functioning
proposed to have the greatest impact on the ability
of the family to meet basic needs (needs such as
food, money, transportation, and shelter), develop-
mental needs of family members and the family
unit, and emerging needs (“crises that arise for the
family such as job loss, illness, etc.”) (Alderfer,
2011, p. 82):
■ Problem solving
■ Communication
■ Roles
■ Affective responsiveness
■ Affective involvement
■ Behavioral control
The McMaster Clinical Rating Scale (MCRS)
and Family Assessment Device (FAD) have been
developed to assess family health across the six
dimensions described by the MMFF. The MCRS
is used by clinicians well trained in the McMaster
Model, and the FAD is a self-report measure that
can be completed by families and scored on each of
the MMFF dimensions (Alderfer, 2011). Whereas
the MCRS can be rated by observers during a semi-
structured family interview, the FAD was designed
to be completed by family members and their
scores averaged. The FAD is widely used and has
been translated into approximately 20 different
languages (Alderfer, 2011).
Models for Family Health Promotion
A great need exists to encourage health promotion
of the whole family unit because health behaviors,
values, and patterns are learned within a family
context. Family health promotion activities are cru-
cial both during wellness and during illness of a
family member. Family health promotion increases
family unity and quality of life. According to Pender,
Murdaugh, and Parsons (2011), family health pro-
motion involves a family’s lifelong efforts to nur-
ture its members, to maintain family cohesion, and
Family Health Promotion 209
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210 Families Across the Health Continuum
Table 8-3 Types of Family Health Routines
Family Health Routine Aspects of the Routine Description of the Routines
Self-care routines
Safety and prevention
Mental health behaviors
Family care
Illness care
Member caregiving
Dietary
Hygiene
Sleep-rest
Physical activity and exercise
Gender and sexuality
Health protection
Disease prevention
Smoking
Abuse and violence
Alcohol and substance abuse
Self-esteem
Personal integrity
Work and play
Stress levels
Family fun (e.g., relaxation, activities,
hobbies, vacations)
Celebrations, traditions, special events
Spiritual and religious practices
Pets
Sense of humor
Decision making related to medical
consultation
Use of health care services
Follow-up with prescribed medical
regimens
Health teaching (i.e., health,
prevention, illness, disease)
Member roles and responsibilities
Providing illness care
Support of member actions
These routines involve patterned behaviors
related to usual activities of daily living
experienced across the life course.
These routines pertain to health protection,
disease prevention, avoidance and partici-
pation in high-risk behaviors, and effort to
prevent unintended injury across the life
course.
These routines have to do with the ways in-
dividuals and families attend to self-efficacy,
cope with daily stresses, and individuate.
These routines include daily activities, tradi-
tional behaviors, and special celebrations
that give meaning to daily life, and provide
shared enjoyment, pleasure, and happiness
for multiple members.
These routines are the various ways mem-
bers make decisions related to health care
needs; choose when, where, and how to
seek supportive health services; and deter-
mine ways to respond to medical directives
and health information.
These routines pertain to the ways family
members act as interactive caregivers
across the life course as they socialize
children and adolescents about a wide
variety of health-related ideals, participate
in specific health and illness care needs,
and support members’ individual routine
patterns.
Source: Denham, S. A. (2003). Family health: A framework for nursing. Philadelphia, PA: F. A. Davis, with permission.
to reach a family’s greatest potential in all aspects
of health.
Family Health Promotion Model
Most models of health promotion focus on the in-
dividual. Adapting Pender’s (1996) health promo-
tion model, Loveland-Cherry and Bomar (2004)
present a family health promotion model. In this
model, the likelihood of a family engaging in
health-promoting behaviors is influenced by the
following general, health-related, and behavior-
specific factors:
1. General influences
■ Family systems patterns, such as values,
communication, interactions, and power
■ Demographic characteristics, such as
family size, structure, income, and culture
■ Biological characteristics
3921_Ch08_205-236 05/06/14 11:03 AM Page 210
2. Health-related influences
■ Family health socialization patterns
■ Family definition of “health”
■ Perceived family health status
3. Behavior-specific influences
■ Perceived barriers to health-promoting
behavior
■ Perceived benefits to health-promoting
behavior
■ Prior related behavior
■ Family norms regarding health-promoting
behavior
■ Intersystem support for behavior
■ Situational influences
■ Internal and environmental family cues
How a family defines family health promotion
will influence the likelihood of them planning
family unit activities that promote family well-
being and cohesion. Family behavioral influences
such as perceived barriers or benefits of health-
promoting activities of the entire family affect
how committed a family will be to continuing or
initiating activities that promote health. For ex-
ample, to encourage a health-promoting family
lifestyle, each family member must value and
believe there is a benefit to eating together, sharing
in activities to maintain the home, or balancing
family power. Figure 8-1 depicts the Family Health
Promotion Model.
Developmental Model of Health and Nursing
The Developmental Model of Health and Nurs-
ing (DMHN) constructed by Canadian scholar
F. Moyra Allen in the mid-1970s and 1980s (Allen
& Warner, 2002) has a goal of increasing the
capacity of families and individuals in health pro-
motion in everyday life situations. The DMHN
supports the concept of empowering partnerships,
as the model emphasizes health as a process and
the capacities all families have, including their po-
tential for growth and change (Black & Ford-Gilboe,
2004). In this interaction model, the nurse’s role
changes at each phase of the health promotion
process, thereby empowering clients toward im-
proving their health status. Examples of nursing
functions include the following:
■ Focuser, stimulator, and resource producer
who involves clients in such tasks as clarify-
ing concerns and goals and thinking about
their learning style
Family Health Promotion 211
Family system patterns
(values, communication
style, interactions,
power structure,
cohesion, socialization
patterns, interactions
with other systems)
Demographic
characteristics
(family size, structure,
socioeconomic status,
ethnicity, culture,
developmental stage)
Biologic characteristics
(genetic/familial
characteristics)
Family health
socialization patterns
Family definition of
health
Perceived family
health status
General
Influences
Health-related
Influences
Perceived barriers to
health-promoting behavior
Perceived benefits of
health-promoting behavior
Prior related
behavior
Family norms regarding
health-promoting behavior
Intersystem support for
behavior
Situational influences on
behavior
Behavioral-specific
Influences
Health-promoting
behaviors
Internal
family and
environmental
cues
Behavioral
Outcomes
FIGURE 8-1 Family Health Promotion Model. (Reproduced from Bomar, P. J. [2004]. Introduction to family
health nursing and promoting family health. In P. J. Bomar [Ed.], Promoting health in families: Applying family research
and theory to nursing practice [3rd ed., pp. 3–37]. Philadelphia: WB Saunders, by permission.)
3921_Ch08_205-236 05/06/14 11:03 AM Page 211
■ Integrator and awareness raiser who assists
clients with analyzing the situation, identify-
ing additional resources, and seeking poten-
tial solutions
■ Role model, instructor, coach, guide, and
encourager as clients make decisions on
alternatives and try new behaviors
■ Role “reinforcer” and reviewer as clients re-
view and evaluate outcomes (Allen & Warner,
2002, p. 122)
Ford-Gilboe (2002) summarizes six studies that
tested the propositions of Allen’s DMHN. The
studies tested four concepts: health potential, health
work, competence in health behavior, and health
status. Results indicate significant relationships be-
tween health potential and health work. Health work
is defined “as a process of active involvement
though which families develop or learn ways of cop-
ing with health situations and using strengths and
resources to achieve goals for individual and family
development” (pp. 145–146). Health potential is de-
fined as “a reservoir of internal and external capac-
ities (i.e., strengths, motivation, resources) that can
be drawn on to support health work” (p. 146). In
essence, health work reflects what families do in re-
sponse to health situations rather than who they are
or what they have access to (i.e., aspects of health
potential). The level of family health potential,
health work, and health competence all were found
to be significant predictors of family functioning.
Monteith and Ford-Gilboe (2002) also report that
health work predicted 24% of the mother’s health-
promoting lifestyle practices. Similarly, moderate
correlations also showed health work and the
mother’s health-promoting lifestyle practices
among 41 adolescent mothers, and the mother’s re-
silience and health work explained 30.2% of the
mother’s health-promoting lifestyle practices (Black
& Ford-Gilboe, 2004).
Model of the Health-Promoting Family
The primary concern of Christensen’s (2004)
Model of the Health-Promoting Family is the
“health practices of the family.” The model ad-
dresses how families can play a part in promoting
both the health of children and their capacities as
health-promoting actors. The model draws on con-
temporary social science approaches to health, fam-
ily, and children, suggesting a new emphasis on the
family’s ecocultural pathway, family practices, and
the child as a health-promoting factor.
As shown in Figure 8-2, this model is analyti-
cally divided into two parts to distinguish factors
external to the family and factors internal to it. The
external factors are further divided into societal
and community-level factors. The societal factors
provide the material base for the family and will,
therefore, to a large degree shape the resources
212 Families Across the Health Continuum
Societal
influences
• Socioeconomic
position
– Income
– Education
– Resources
• Family structure
and policy
• Ethnicity
Community
influences
• School
• Day care
• Peers
• Neighborhood
• Health services
• Consumer
society
• Media
Genetic background and
family health history
Family history of
health practices
Family ecocultural
pathway
• Values
• Goals
• Needs
• Family practices
Family
health
practices
Child health
status
Child as health-
promoting actor
FIGURE 8-2 Model of the Health-Promoting Family. (Reproduced from Christensen, P. [2004]. The health-
promoting family: A conceptual framework for future research. Social Science & Medicine, 59, 377–387, by permission.)
3921_Ch08_205-236 05/06/14 11:03 AM Page 212
available to the family. These include, for example,
income and wealth, education and knowledge, fam-
ily structure and housing, ethnicity, social net-
works, and time. The community level is the
configuration of social spheres that contribute to
child health. These include the consumer society,
local community, schools, health services, mass
media, peer groups, and day-care institutions.
The components of the model central to the
conception of the family and the processes that may
be thought of as going on “inside” it are indicated
with a semipermeable boundary—the circle. These
are linked to and influenced by the processes and
factors “outside” of the family. The internal level
has the “family ecocultural pathway” and “family
health practices” as the main elements. By interact-
ing with each other, these elements lead to collec-
tive patterns of health action, practice, and forms
of knowledge. An important feature of the model
is that it will allow differences between families to
be revealed by identifying the conditions for a fam-
ily to act in an optimal way for health. It also high-
lights the obstacles for families in promoting the
health and well-being of children, and the barriers
to enabling the child’s development as a health-
promoting actor during her growth.
Family health practices fall into the center of the
circle (internal factors), and include all those activ-
ities of everyday life that shape and influence the
health of family members. These consist of the tra-
ditional health practices around food and healthy
eating, physical activity, alcohol and smoking, and
care and connection, as well as other key factors
that can be shown to affect young people’s health
and well-being.
Although family health promotion has received
considerable emphasis in nursing in the past decade,
reports on the effectiveness of family-focused health
promotion continue to be scanty. Therefore, con-
tinued research is required using family health pro-
motion models to evaluate the effectiveness of
interventions to promote family health.
ECOSYSTEM INFLUENCES:
BIOECOLOGICAL SYSTEMS THEORY
The ecological approach, first proposed by Bron-
fenbrenner (1977), is useful to understand the
multidimensional aspect of family health promo-
tion. (See Chapter 3 for a conceptual understanding
and explanation of this model.) Family health
promotion is one of the by-products of family
interactions with factors and systems outside
the home and internal family processes. This ap-
proach attends to the interactions among the
system levels:
■ Microsystem
■ Mesosystem
■ Exosystem
■ Macrosystem
The microsystem pertains to individual factors,
such as biology, personal experience, and general
demographics (e.g., age, gender, and education).
The mesosystem refers to the interactions be-
tween the individuals and their close relationships
with partners, peers, and families. The exosystem
refers to the community contexts for the family,
such as schools, places of work, and neighbor-
hoods. Macrosystems are considered the broad
cultural attitudes, ideologies, and belief systems
that have influence on the family health choices
(Lucea, Glass, & Laughon, 2011). This section
explores how the ecosystem influences the quality
of family life and family health.
Exosystem and Macrosystem
Influences on Family Health
Both the exosystem and the macrosystem influence
family decisions, actions, and interactions that
contribute to the health of family members. Some
specific external influences include the national
economy, family and health policy, societal and cul-
tural norms, media, and environmental hazards such
as noise, air, soil, crowding, and chemicals. We
explore some specific exosystem and macrosystem
influences below.
Economic Resources
The national economy directly affects the family’s
ability to promote health. As a general matter, dur-
ing economic downturns, health promotion initia-
tives tend to take a back seat to other, more pressing
needs. More pointedly, the availability of jobs and,
in turn, discretionary funds, directly affects the
quality of a family’s lifestyle. Clear disparities exist
between health promotion in middle-class families
and in low-income families (Edburg, 2013). See
Chapter 5 for more on family social policy and
health disparities.
Family Health Promotion 213
3921_Ch08_205-236 05/06/14 11:03 AM Page 213
Socioeconomic class is a determinant of health
promotion. When a family has economic health,
it has the resources needed for family health pro-
motion. Adequate family income contributes to
emotional well-being and supplies resources for
adequate family space, recreation, and leisure.
Low-income families, by contrast, are less likely
to engage in health-promoting and preventive
activities than middle- and upper-class families.
The cost of buying recreational and exercise
equipment, for example, is often beyond the
means of low-income families. The activities of
low-income families (and government policy
aimed at them) are often directed toward meeting
basic needs—providing for food, shelter, and
safety, and curing acute illness—rather than pre-
venting illness or promoting health. Low-income
families often have disproportionately high uti-
lization of emergency department (ED) and hos-
pital services, and low utilization of preventive
visits (Holland et al., 2012).
Governmental Health and Family Policies
Health and family policies at all governmental lev-
els affect the quality of individual and family
health. Many of the objectives in Healthy People
2020 are couched in terms of the individual; many
of these objectives, however, can be attained only
by providing access to health care and require
changing family health lifestyles (Holland et al.,
2012; Wang, Orleans, & Gortmaker, 2012). For
example, local communities provide water and
monitor its quality, maintain sanitation, develop
and maintain parks for recreation, and provide
health services to low-income and elderly families.
Such local services enhance the health of individ-
uals and, thus, enhance family health. At the state
level, services include assistance with medical care
through Medicaid, the maintenance of state recre-
ational areas and parks, health promotion and pre-
vention programs, and economic assistance for
low-income families and children (Anderson,
Ward, & Hatton, 2008).
Federal-level policies and fiscal support are
needed to improve the quality of family health.
Because of the number of different government
agencies involved in health care and family issues,
a need exists for collaboration among these policy-
making bodies. Box 8-1 summarizes the brief his-
torical perspectives of family health promotion.
Environment
Awareness of the quality of the family living envi-
ronment is crucial because the family and its
members are exposed to public, occupational, and
residential hazards. Environmental health is one
of the areas of emphasis of the Healthy People 2020
objectives. Box 8-2 lists the major objectives spe-
cific to families. Many environmental hazards are
not monitored consistently by families or organi-
zations. Therefore, it is imperative to increase the
capacity of families to recognize environmental
hazards and to teach strategies to prevent, re-
move, or cope with environmental hazards such
as pollution of air, water, food, and soil from nu-
merous chemicals, occupational hazards, and vio-
lence (Cowan, 2008). For instance, to prevent
exposure to lead and pesticides, families could be
taught to wash fruits and vegetables before eating.
Workers should be taught to monitor chemicals
and infectious materials that might be transmitted
to them and their families on work clothing or
skin. In addition, paint in older homes and outside
play areas should be inspected for lead contami-
nation. Families with young children and workers
who work around metals and chemicals need to be
especially cautious of lead poisoning, and should
consult Web sites such as the Centers for Disease
Control and Prevention (CDC) for additional
information.
Media
Another influence on family health is the visual
and print media. Media influence on children
has steadily increased as new and more sophisti-
cated types of media have been developed and
made available to the public. Recent evidence
raises concerns about the media influence on
aggression, sexual behavior, substance use, disor-
dered eating, and academic difficulties. Consis-
tent evidence has been reported that violent
imagery in television, film and video, and com-
puter games has substantial short-term effects
on arousal, thoughts, and emotions, increasing
the likelihood of aggressive or fearful behavior
in younger children (Strasburger, Jordan, &
Donnerstein, 2010).
Long-term mental health risk for early child-
hood violent media exposure was reported by
Fitzpatrick, Barnett, and Pagani (2012). They ex-
amined whether preschool child exposure to what
214 Families Across the Health Continuum
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Family Health Promotion 215
BOX 8-1
Historical Perspectives of Family Health Promotion
Although the majority of health care professionals con-
tinue to focus their activities on prevention and treatment
of illness in individuals and dysfunctional families, key so-
cial forces, including the wellness and self-care movement
started in 1979, continue to stimulate the nursing profes-
sion to focus on health promotion for families. The 1980
White House Conference on Families pointed out the
need to improve family functioning and encourage
healthy family lifestyles. The conference brought to light
the importance of disease prevention and health promo-
tion for improving the quality of family life in the United
States. Three documents from the U.S. DHHS—Healthy
People: The Surgeon General’s Report on Health Promo-
tion and Disease Prevention (1979); Promoting Health/
Preventing Disease: Objectives for the Nation (1980);
and Healthy People 2000: National Health Promotion
and Disease Prevention Objectives (1990)—provided
overall goals for the nation regarding health promotion for
individuals and families.
Although there were many improvements in the health
status of the nation as a whole, Healthy People 2010
(USDHHS, 2000) builds on the lessons learned from the
three previous initiatives. The goals for 2010 through 2020
are to eliminate health disparities and to increase the quality
and years of life. Major objectives for the millennium include
promoting healthy behaviors, promoting healthy and safe
communities, improving systems for personal and public
health, and preventing and reducing diseases and disorders.
Since the first report by the surgeon general in 1979 and
the continued national interest in health promotion in the
1990s, health professionals, family scientists, sociologists,
psychologists, religious leaders, and social workers have
made considerable strides in understanding and intervening
to improve the quality of family health. Another example of
this continuing national interest in health promotion is the
increasing use of parish nurses, who provide health care
and health promotion to individuals and families in faith
communities (Solari-Twadell, McDermott, & Matheus, 1999).
parents generally characterize as violent televi-
sion programming predicts a range of second-
grade mental health outcomes, and reported that
child exposure to televised violence was associ-
ated with teacher-reported antisocial symptoms,
BOX 8-2
Healthy People 2020 Environmental Objectives Specific to Families
Objective Short Title
WATER QUALITY
EH-4: Increase access to safe drinking water
EH-5: Reduce waterborne disease outbreaks
EH-6: Increase water conservation
EH-7: Reduce surface water health risks
TOXICS AND WASTE
EH-8: Reduce blood lead levels in children
EH-9: Reduce risks posed by hazardous sites
EH-10: Reduce pesticide exposures
EH-11: Reduce toxic pollutants in the environment
HEALTHY HOMES AND HEALTHY COMMUNITIES
EH-13: Reduce indoor allergens
EH-14/15: Increase homes tested for radon
EH-16: Implement school policies to protect against
environmental hazards
EH-17/18: Increase lead-based paint testing
EH-19: Reduce the number of occupied substandard
housing
OTHER ENVIRONMENTAL OBJECTIVES SPECIFIC TO
CHILDREN
24-2a: Reduce asthma-related hospitalizations of
children younger than 5
TU-11: Reduce the proportion of nonsmokers exposed
to secondhand smoke
TU-14: Increase the proportion of smoke-free homes
Source: U.S. Department of Health and Human Services. (2012). Healthy People 2020. Washington, DC. Retrieved
from http://healthypeople.gov/2020/topicsobjectives2020/objectiveslist.aspx?topicId=12
emotional distress, inattention, and lower global
academic achievement in second grade. Violent
viewing also was associated with less child-
reported academic self-concept and intrinsic mo-
tivation in second grade (Fitzpatrick et al., 2012).
3921_Ch08_205-236 05/06/14 11:03 AM Page 215
Many advertisements advocate drinking alcohol,
using tobacco products, and consuming foods that
are high in sugar, salt, and fat. Increasingly, to-
bacco, alcohol, and illicit drugs have been glamor-
ized in the media. Tobacco manufacturers spend
$6 billion per year and alcohol manufacturers
$2 billion per year in advertising that appeals to
children (“Influence on Children Media,” 2008).
Movies and television programs often show the
lead character or likeable characters using and
enjoying tobacco and alcohol products.
At the same time, the readily available and rap-
idly increasing media outlets put more emphasis on
health in a positive way (Lee, 2008). Relatively
recent tobacco advertising regulations, for instance,
take a small step in the right direction toward pro-
moting healthier families. The regulations prohibit
tobacco advertisements near schools, on T-shirts,
and in magazines for teens. Many states require
that cigarettes not be in the reach of minors in
retail stores (CDC, 2012). In fact, one of the
Healthy People 2020 objectives is to reduce the pro-
portion of adolescents and young adults in grades
6 through 12 who are exposed to tobacco advertis-
ing and promotion (U.S. Department of Health
and Human Services [USDHHS], 2012).
The American Academy of Pediatrics (AAP)
(2010) has offered comprehensive recommenda-
tions to address the issue of media influence on
children. Included in these recommendations are
suggestions for parents, practitioners, schools,
entertainment industry, advertising industry, re-
searchers, and government to protect children and
adolescents from harmful media effects and to max-
imize the powerfully prosocial aspects of modern
media. In addition, the AAP urges media producers
to be more responsible in their portrayal of vio-
lence. It advocates for more useful and effective
media ratings. Specifically, it recommends proac-
tive parental involvement in children’s media ex-
periences. By monitoring what children hear and
see, discussing issues that emerge, and sharing
media time with their children, parents can mod-
erate the negative influences and increase the pos-
itive effects of media in the lives of their children
(AAP, 2010).
Science and Technology
Advances in science and technology have increased
the life span of Americans, decreased the length of
hospital stays, and contributed to our understanding
of how to prevent, reduce, and treat disease. The
development of more effective medications and ad-
vanced medical equipment technology has greatly
increased the feasibility of home health care for
chronically ill family members of all ages. Families
are often the caregivers for ill members, and they
provide the majority of care to older adults. Many
valuable sources of information on health promo-
tion for families and individuals are now available.
The Internet and the use of the worldwide Web
is one forum that has come of age in the areas of
family life education and nutrition education (Silk
et al., 2008; Välimäki, Nenonen, Koivunen, &
Suhonen, 2007).
Other technological advances are changing how
we provide health care. The use of remote patient
monitoring, often referred to as telehealth, has been
widely adopted by health care providers, particu-
larly home care agencies (Suter, Suter, & Johnston,
2011). Most agencies have invested in telehealth to
facilitate the early identification of disease exacer-
bation, particularly for patients with chronic
diseases such as heart failure and diabetes. For ex-
ample, telehealth permits families to transmit heart
rates via telemedicine to health care providers and
for specialists to consult with family physicians,
making it easier for individuals to access health care
and for practitioners to provide it (Gregoski et al.,
2012). Suter et al. (2011) proposed that the use of
telehealth by home care agencies and other health
care providers be expanded to empower patients
and promote disease self-management with result-
ant improved health care outcomes. Telehealth has
the potential to improve health care access, quality,
and efficiency.
Microsystem and Mesosystem
Influences on Family Health
Internal ecosystem influences on family health in-
clude family type and developmental stage, family
lifestyle patterns, family processes, personalities
of family members, power structure, family role
models, coping strategies and processes, resilience,
and culture. All of these factors are interrelated.
For example, a family’s lifestyle cycle stage influ-
ences a family’s structural pattern, and family struc-
tures affect the family interaction process and
relationships (McGoldrick et al., 2011). Therefore,
nurses working with families in the area of health
promotion must be sensitive to these various
216 Families Across the Health Continuum
3921_Ch08_205-236 05/06/14 11:03 AM Page 216
factors to recommend successful family health
promotion interventions.
Family Structure
Families in this millennium are quite different struc-
turally from the families of the 1970s. Family struc-
tures are more diverse; there are more dual-career/
dual-earner families, blended families, same-sex
couples, and single-parent families (Kaakinen &
Birenbaum, 2012). Recently, increasing numbers of
grandparents raising grandchildren have been re-
ported (Leder, Grinstead, & Torres, 2007). Families
in both the middle and lower classes are in such
economic strain that they both struggle with health
promotion. The number of vulnerable families has
also increased, including low-income traditional
families, low-income migrant families, homeless
families, and low-income older adults. Included in
the vulnerable population are low-income, single-
parent families and single-parent teen families.
Vulnerable families are coping with a pileup of stres-
sors and may be unable to focus on activities to
enhance health (Walsh, 2011a). As stated earlier,
low-income families may focus less on health pro-
motion and more on basic needs of obtaining
shelter, adequate food, and health care.
Health promotion for these different families
presents various challenges. For example, a sin-
gle, working parent may lack parent-child time,
experience role stress, and have poor lifestyle
patterns and poor life satisfaction (Walsh, 2011a).
Data from the 2002, 2006, and 2010 Scottish
Health Behavior in School-aged Children (HBSC)
surveys indicate that in single-mother homes,
having a working mother was also positively
associated with irregular breakfast consumption
(Levin, Kirby, & Currie, 2012). Similarly, the
findings of the Canadian Community Health
Survey indicated that there is an association be-
tween household structure and smoking among
adolescents in Canada. The odds of youth smok-
ing in the single-parent household was 1.78 times
greater than the odds of youth smoking in two-
parent households (Razaz-Rahmati, Nourian, &
Okoli, 2011). Family structure is associated
with a range of adolescent risk behaviors, includ-
ing smoking, drinking, cannabis use, having
sex, and fighting (Levin et al., 2012). Those ado-
lescents living in a family with both parents pres-
ent fared better than those who lived with single
parents.
Family Processes
Family processes are continual actions, or a series
of changes, that take place in the family experience.
Essential processes of a healthy family include
functional communication and family interaction
(Smith et al., 2009). Through both verbal and non-
verbal communication, parents teach behavior,
share feelings and values, and make decisions about
family health practices. It is through communica-
tion that families adapt to transitions and develop
cohesiveness (Smith et al., 2009). Positive, reinforc-
ing interaction between family members leads to a
healthier family lifestyle. For example, when family
members encourage, express affection, and show
appreciation to each other, the family tends to be
more functional (healthier).
Family Culture
Cultures define and value health, health promo-
tion, and disease prevention differently (Meyer,
Toborg, Denham, & Mande, 2008; Spector, 2013).
One of the most evident features of families today
is the growing cultural diversity (Walsh, 2011b). A
mounting trend is toward a global society with
ever-increasing diversity among the populations;
therefore, an expanded worldview is necessary for
health care students and providers (Purnell, 2013).
Clients may not understand or respond to a family
nurse’s suggestions for health promotion because
the suggestions conflict with their own health be-
liefs and values. Hence, it is crucial to assess and
understand the family culture and health beliefs
before suggesting changes in health behavior
(Spector, 2013). An important component of family
assessment is the consideration of cultural health
practices. These practices influence all aspects of
the nursing process, and understanding them helps
the nurse evaluate client behavior and plan more
effective interventions that are consistent with
client health beliefs.
Keep in mind with regard to family culture
that cultural tension or an acculturation gap may
emerge between immigrant children and their
parents relative to beliefs about healthful behavior
(Birman & Poff, 2011). Children become in-
volved in the new culture relatively quickly, par-
ticularly if they attend school, but their parents
may never acquire sufficient comfort with the
new language and culture to become socially
integrated into their new country. In addition,
immigrant children may have few opportunities
Family Health Promotion 217
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to participate in and learn about their heritage
culture (Birman & Poff, 2011). Therefore, nurses
need to be aware that parents and children may
misunderstand one another because of cultural
differences in expectations for parent and child
behaviors and family relationships. In addition,
immigrant parents may have strict and control-
ling parenting styles in their heritage culture that
are considered warm and attentive to the child, but
that in the host culture are considered authoritarian
(Farver, Xu, Bhadha, Narang, & Lieber, 2007). At
the same time, children may embrace the opportu-
nity to engage in unsupervised activities and behav-
iors that may be normative in the host society (such
as sexual activity, drinking alcohol, eating fast
foods, or recreational drug use) but unacceptable
in their heritage culture and to their parents
(Birman & Poff, 2011). The children taking on un-
healthful behaviors of the new culture interferes
with the health promotion function of the parents,
so there is a tension between society and the family
socialization function.
Family Lifestyle Patterns
Lifestyle patterns affect family health. In North
America, hundreds of thousands of unnecessary
deaths occur each year that can be directly attrib-
uted to unhealthy lifestyles. These deaths can be
traced back to heart disease, hypertension, cancer,
cirrhosis of the liver, diabetes, suicide, mental
health, and homicide. For example, parental
smoking is associated with a significantly higher
risk of their adolescent children smoking (Gillman
et al., 2009).
Likewise, positive lifestyle patterns affect fam-
ilies in positive ways. For instance, when family
members engage often in leisure activities, recre-
ation, and exercise, they are able to cope with day-
to-day problems better (Smith et al., 2009). Time
together promotes family closeness. Healthy
lifestyle practices such as good eating habits, good
sleep patterns, proper hygiene, and positive
approaches to stress management are passed from
one generation to another (McGoldrick et al.,
2008). In addition, when one family member ini-
tiates a health behavior change, other family
members often make a change too. For example,
when an individual family member changes eating
patterns, perhaps by going on a diet, other family
members often change their eating patterns
as well.
Family Nutrition
Family nutrition is a crucial aspect of 21st century
family health promotion and health protection.
A major issue today for American families is the
tendency toward overweight and lack of exercise
among family members of all ages. Major factors
that influence nutritional health are societal trends
(technology, media, fast food, status), the family
system (rituals, mealtime, environment, culture,
values, communication, finances, marital status),
and individual characteristics (self-concept, age, ac-
tivity levels) (Epstein, Roemmich, &, Robinson,
2008; Levin et al., 2012; Musick & Meier, 2012;
Smith et al., 2008; Spector, 2013).
“Overnutrition” in American families is often
the issue rather than malnutrition (Levin et al.,
2012). A result of societal and family changes is
that obesity in children and adolescents is a key
21st-century issue (USDHHS, 2011). Effective
parenting, health teaching about nutrition, physi-
cal activity, and consideration of the family context
are reported to be essential to reducing childhood
obesity (Kitzmann, 2008). For example, lowering
TV-viewing time by 1 hour per day could reduce
approximately 100 kcal/day through reducing eat-
ing while watching, exposure to food and beverage
advertising, and sedentary behavior. Increasing
physical activity and reducing sedentary behaviors
are clearly important strategies to restore youth
energy balance (Epstein et al., 2008; Sonneville &
Gortmaker, 2008).
The nurses’ role in family nutrition is to assess
the quality of nutrition for individuals and the fam-
ily system, provide anticipatory guidance, teach
about nutrition, and support changes in the indi-
vidual and family nutritional lifestyle. For example,
one of the primary issues for people is large portion
size. To promote weight loss and control, the fam-
ily cook and members could be taught the appro-
priate portion size according to age and nutritional
guidelines. The nurse can become familiar with the
most current guidelines in the Dietary Guidelines for
Americans 2010 published by the USDHHS (2011).
Religion and Spirituality
Religion and spirituality are factors that influence
the quality of family life. Many fundamental family
beliefs are founded in religion and spirituality.
Spirituality and religious beliefs appear to serve as
powerful protectors embraced by resilient families
(Black & Lobo, 2008).
218 Families Across the Health Continuum
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Although often used interchangeably, the terms
religion and spirituality are different (Koenig, 2012).
Religion tends to relate to the expression of beliefs
and includes a relationship with God or some super-
natural power. Spirituality provides transcendence,
meaning, and compassion for others. Pivotal life
events such as births, marriage, life-threatening ill-
ness, tragedy, and death are situations that may spark
a family’s interest in spirituality (Burkhart, 2011).
Religion aids in family coping responses and is
reported to provide support for selected caregivers
(Burkhart, 2011). Membership in a church is often
an avenue to gain supportive networks for family
members (Carson & Koenig, 2011; Koenig, 2012;
Walsh, 2011a). The social support of religion and
the clergy can be particularly helpful during family
transitions. Many faith communities sponsor sup-
port groups that are a valuable resource for single
parents, stepfamilies, single adults, the bereaved,
widows and widowers, the unemployed, and par-
ents of young children.
Spirituality may or may not be religion based,
but whatever the spiritual orientation, families as-
sociated with a shared internal value system that
provides meaning tend to feel a connection with
the family, community, and universe (Walsh,
2011a). Family spirituality provides the basis for
harmony, communication, and wholeness among
family members (Black & Lobo, 2008). A shared
belief system of hope and triumph enables families
to make sense of crisis or change. When con-
fronted with problems, many families foster an op-
timistic attitude with spirituality, seeking purpose
in faith. Spirituality has also been found to be an
essential factor of resilience, as it provides families
with the ability to unite, understand, and overcome
stressful situations (Black & Lobo, 2008). Religios-
ity is reported to have a strong positive relationship
to parent-adolescent attachment, family function-
ing, and adolescent psychological adjustment in the
United States and Ireland (Goeke-Morey et al.,
2013; Kim-Spoon, Longo, & McCullough, 2012).
The positive effect of spirituality is pervasive in
health care for the lives of many families; there-
fore, a need exists to integrate spiritual assessment
and interventions in total family care (Black &
Lobo, 2008). Four nursing diagnoses related
to family spiritual health are (1) spiritual distress,
(2) readiness for enhanced spiritual well-being,
(3) risk for spiritual distress, and (4) impaired
religiosity, both risk for and actual (NANDA
International, 2012). Spiritual distress is a disrup-
tion in the harmony of life and pervades the entire
person’s or family’s universe. To provide holistic
care, nurses should assess a family’s spiritual health
in a nonjudgmental manner by supporting the
family’s spiritual beliefs, assisting families to meet
their spiritual needs, providing spiritual resources
for family transitions and lifestyle changes, and
assisting families to find meaning in their circum-
stances (Carson & Koenig, 2011). Last, to foster a
family’s spiritual well-being, the nurse should
listen, be encouraging and empathetic, show
vulnerability, and demonstrate commitment.
FAMILY NURSING INTERVENTIONS
FOR FAMILY HEALTH PROMOTION
Family health promotion has been defined as the
process by which families work to improve or main-
tain the physical, social, emotional, and spiritual
well-being of the family unit and its members
(Loveland-Cherry, 2011). Family nurses have a cru-
cial role in facilitating health promotion and well-
ness within the family context across the life span.
Enhancing the well-being of the family unit is es-
sential during periods of wellness, as well as during
illness, recovery, and stress. A primary goal of nurs-
ing care for families is empowering family members
to work together to attain and maintain family
health; therefore, family health promotion should
focus on strengths, competencies, and resources
(Gottlieb, 2013; Wright & Leahey, 2013). Family
nursing that focuses on health promotion should be
logical, systematic, and include the client(s). The
outcomes of health promotion of the family include
family unity, flexibility, communication, and quality
of care (Loveland-Cherry, 2011).
A myriad of strategies and interventions facilitate
family health promotion, such as empowerment,
promotion of family integrity, maintenance of fam-
ily process, exercise promotion, environmental
management, mutual goal setting, parent education,
offering information, drawing forth family support,
and anticipatory guidance (Loveland-Cherry, 2011;
Wright & Leahey, 2013). The interventions have
focused on building resources in families and pro-
moting changes in families. A number of the inter-
ventions center on fostering the development
of parents’ self-efficacy in effective parenting and
accessing resources to meet family health needs
Family Health Promotion 219
3921_Ch08_205-236 05/06/14 11:03 AM Page 219
(Loveland-Cherry, 2011). The following strategies
will be discussed for promoting family health: fam-
ily self-care contract, family empowerment and
family strengths-based nursing care, anticipatory
guidance and offering information, use of rituals/
routines and family time, and family meal and
healthy eating.
Family Self-Care Contract: Involvement
of All Family Members
The family and nurse must collaborate and set mu-
tual goals by establishing a nursing contract. The
nursing contract is a working agreement that is
continuously renegotiable and may or may not be
written depending on the situation (Anderson et al.,
2008). The premise of contracting is that it is under
the family’s control, it increases the family’s ability
to make healthy choices, and this process facilitates
family empowerment by collaborating with a
health professional (Anderson et al., 2008).
Once the nurse and family have identified family
strengths and areas for growth and change, the
family should prioritize its goals. The commitment
of all family members directed toward achieving
a goal is crucial to the family’s success. Nurses can
assist a family to develop a self-care contract to
improve health behaviors, independently or with
a nurse. Table 8-4 provides components and sam-
ple items of a family self-care contract. The con-
tracts are more effective when the components
are negotiated and signed by all family members
(Kim-Godwin & Bomar, 2010).
Family provides resources for health behaviors
and health care. These resources include monetary
support, information, emotional support, skills to
navigate systems, and direction on desirable or
healthy behaviors (Loveland-Cherry, 2011). Families
are responsible for the health care of their members.
These responsibilities include required immuniza-
tions and health checks; providing adequate shelter,
clothing, and food; and seeking health care when
warranted (Loveland-Cherry, 2011). Socialization of
family members is another major function in families
and is accomplished in a variety of ways. Parents are
important role models for children.
220 Families Across the Health Continuum
Table 8-4 Components of a Family Self-Care Contract
Component of the Contracting Process
(Mutually Agreed on By Family Members
and Health Professional or By Family Alone) Example of Item in a Family Contract
Family assessment of wellness and identification
of area for improvement
Set the goal, environmental planning, and
reinforcement
Develop a plan
Assign responsibilities
Determination of time frame
Evaluate the outcomes
Modify, renegotiate, or terminate
Our family feels a sense of always being hurried with no time to relax,
and we are irritable with each other.
We want to have more relaxing time together as a family and to enjoy
our time together.
Have a family meeting to evaluate barriers and create a plan. The
outcome might be to reduce sports activities for children. Specify a
family fun night/afternoon.
Plan an evening game night with no television or phone calls allowed.
All members agree on the game or recreation activity. No one else
but the family should participate. Evaluate the budget for games. The
family nurse will assist the family to create the plan. Family members
will agree to take part in the family fun time.
We plan to do this for 2 months, one night a week on Sunday evening
from 4:00 p.m. to 7:00 p.m.
After each week, we will spend 5 minutes talking about what was good
and what could be improved. How are we relating to each other the
remainder of the week?
We will evaluate the family fun time after 2 months and mutually agree
on changes.
Source: Kim-Godwin, Y. S., & Bomar, P. (2010). Family health promotion. In J. R. Kaakinen, V. Gedaly-Duff, D. P. Coehlo,
& S. M. H. Hanson (Eds.), Family health care nursing (4th ed.). Philadelphia, PA: F. A. Davis, with permission.
3921_Ch08_205-236 05/06/14 11:03 AM Page 220
Family members provide both negative and
positive role models. For example, smoking, use of
drugs and alcohol, poor nutrition, and inactivity
are often intergenerational patterns. Stress man-
agement, exercise, and communication are also
learned from parents, siblings, and extended family
members such as grandparents (McGoldrick et al.,
2008). One interesting finding of note to nurses
is that fathers’ involvement is especially important
for vulnerable families. Marsiglio (2009) reported
that fathers’ lack of exercise, poor eating, excessive
drinking, and smoking predicts the same behaviors
among adolescents. Shapiro, Krysik, and Pennar
(2011) analyzed mother-reported data in families
eligible for the Healthy Families Arizona preven-
tion program (N = 197) and found that families
with greater father involvement had better prena-
tal care, higher incomes, less maternal involvement
in Child Protective Services, less physical domestic
violence, and greater maternal mental health
reflected through less loneliness. Therefore,
nurses need to make an effort to include fathers
when developing plans for family health promo-
tion and to assist fathers to develop positive role
models for their children. By teaching healthy
lifestyle in the community, faith-based centers,
homes, and the workplace, nurses promote positive
role modeling.
Family Empowerment and Family
Strengths-Based Nursing Care
A primary goal of nursing care for families is em-
powering family members to work together to at-
tain and maintain family health; therefore, family
health promotion should focus on strengths, com-
petencies, and resources (Gottlieb, 2013; Wright
& Leahey, 2013). The nurse collaborates with the
family and provides information, encouragement,
and strategies to help the family make lifestyle
changes. This process is termed empowerment. The
underlying assumption of empowerment is one of
partnership between the professional and the client
as opposed to one in which the professional is dom-
inant. Families are assumed to be either competent
or capable of becoming competent (Anderson et al.,
2008).
The primary emphasis in family empowerment
is involvement of the family in goal setting, plan-
ning, and acting, not on having the nurse do this
for the family. A key role of family nurses in family
health promotion is to empower family members
to value their “oneness,” to appreciate family to-
getherness, and to plan activities to foster their
unity (Gottlieb, 2013).
One way of empowering a family is the use
of commendation because it enables families to
view the family problems differently and move
toward solutions that are more effective. Wright
and Leahey (2013) recommend that nurses rou-
tinely commend family and individual strengths,
competencies, and resources observed during the
family interview. According to Wright and Leahey
(2013), commendations to families regarding their
strengths are “powerful, effective and enduring
therapeutic interventions” (p. 150). While this in-
tervention is important for all families, it is espe-
cially important for vulnerable families. Often, a
family has unique strengths that are temporarily
overshadowed by the health needs, so these strengths
lie outside of the family’s awareness (Walsh,
2011a). By commending a family’s competence and
strengths, and offering it a new opinion of itself, a
context for change is created that allows families to
discover their own solutions to problems (Gottlieb,
2013; Wright & Leahey, 2013).
The strengths-based approach has been used
in health promotion, to enhance wellness and
well-being. Working with strengths enables a
person to get the most out of living in order to
cope, recover, heal, and discover a new purpose
and meaning in living. Strengths-based nursing
care does not ignore or negate problems; neither
does it turn a blind eye to weaknesses or deficits.
Instead, it uses strengths to balance or overcome
them (Gottlieb, 2013, p. 24). Working with the
person’s and family’s strengths allows patients to
maximize and support their responses in order
to deal with everyday events and difficult life
challenges (including illness, injury, disability,
and trauma) and to meet their goals (Gottlieb,
2013). Strengths can be biological, intrapersonal
and interpersonal, and social. Biological strengths
are related to the biochemical, genetic, hormonal,
and physical qualities within each individual or
family. Intrapersonal and interpersonal strengths
reside in the person and define one’s personhood
and are considered a part of a person’s or a fam-
ily’s inner resources. Social strengths, commonly
known as resources or assets, reside in the person’s
environment and are available to individuals or
the family (Gottlieb, 2013).
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Anticipatory Guidance and Offering
Information
During their life course, families inevitably experi-
ence crises and either normative or nonnormative
stress. The family’s resilience, unity, and resources
influence how they cope with crisis and stress. The
goal of the family nurse is to facilitate family adap-
tation by empowering the family to promote re-
silience, reduce the pileup of stressors, make use of
resources, and negotiate necessary changes to en-
hance the family’s ability to rebound from stressful
events or crises. The nurse can teach families to an-
ticipate life changes, make the necessary adjust-
ments in family routines, evaluate roles and
relationships, and cognitively reframe events.
Nurses should offer information based on family
abilities and should encourage family members to
seek resources independently (Wright & Leahey,
2013). Families usually desire information about
developmental issues and health promotion. For
example, helping parents to understand and help
their children is an important intervention for fam-
ilies (Wright & Leahey, 2013). Nurses can teach
families about physiological, emotional, and cog-
nitive characteristics, as well as identify develop-
mental tasks or goals of children and adolescents
that can be affected or altered during times of
illness (Wright & Leahey, 2013, p. 152).
Nurses working with well families can teach
family awareness, encourage family enrichment,
and provide information on community agencies and
Web sites that are resources for strengthening
and enriching families. The family could be en-
couraged to agree on a goal to attend or find out
more about resources or programs. By offering op-
portunities for family members to express feelings
about family experiences, the nurse enables the
family to draw forth its own strengths and re-
sources to support one another (Wright & Leahey,
2013). Drawing forth family support is especially
important in primary health care settings (Wright
& Leahey, 2013).
Use of Rituals/Routines
and Family Time
Denham (2011) emphasizes the use of family rituals
and routines for health promotion. The findings of
previous research have indicated that predictable
routines and meaningful rituals are related to
healthier outcomes and that establishing routines
is vital to managing demands in households with
many extended family members (Hall, 2007).
Family nurses know that routines are observable
and repeated behavior patterns that have great con-
sistency and regularity. Family routines are collec-
tive events that occur on a daily, weekly, or annual
basis. They typically include a set time and place,
assignment of roles, and an element of planning
ahead. Nurses can work with families to establish
or help them maintain daily routines that are cre-
ated around mealtimes, taking medications, and
sleep (Fiese & Everhart, 2011). Families are able to
plan ahead and provide a sense of stability to daily
routines, yielding lower levels of stress and better
family life. Family routines can be disrupted for ex-
pected developmental transitions (such as having a
new baby in the house or moving to a new geo-
graphical location) and unexpected family situa-
tions (such as a diagnosis of a chronic health
condition or strained economic resources). There-
fore, family nurses can help prospective parents dis-
cuss family routines so they can be established
when the new family member arrives. The key
preservative function of routines appears to be
not only maintaining a sense of order in daily life,
but also staying connected as a group (Fiese &
Everhart, 2011). Routines provide family members
the opportunity to communicate about events im-
portant to them. For example, at family holiday
gatherings, memories about past gatherings are
shared, communicating a shared heritage and sense
of belonging to a larger group. Over time, these
communication patterns expressed during family
gatherings come to cement relationships shown
to be associated with healthy family functioning
(Fiese & Everhart, 2011).
222 Families Across the Health Continuum
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Family ritual is a repetitive pattern of prescribed
formal behavior pertaining to some specific event,
occasion, or situation, which tends to be repeated
over and over again (Imber-Black, 2011). Family
rituals often surround secular (such as birthday)
and ceremonial occasions linked to religion (such
as baby baptism), faith or some form of canonical
principles that distinguish ordinary from extraor-
dinary and celebrate value ideals (Denham, 2011).
Rituals are best introduced when there is an exces-
sive level of confusion, as they provide clarity in a
family system (Imber-Black, 2011).
Family routines/rituals may be perceived as
being a fairly reliable index of family collaboration,
accommodation, and synergy (Denham, 2011). To
use rituals and routines as therapeutic interven-
tions, nurses must identify ways to use intentional-
ity to assist family members as they create, amend,
and adjust routines so that they are relevant to fam-
ilies’ unique health and illness needs. Nurses need
to be educated to observe or consider the impact
of family rituals and routines on management of
chronic illness. For example, diabetes is a disease
greatly influenced by adherence to a prescribed
medical regimen that usually includes a dietary
plan, exercise, compliance in medicine usage, blood
glucose monitoring, physician visits, and other care
modalities. When adherence to a medical regimen
is a concern, family members must identify the crit-
ical care aspects, key member duties for essential
activities, and necessary actions to be included in
family routines (Denham, 2011).
Family Meal and Healthy Eating
Factors in the family environment that promote
healthful eating include the healthfulness of foods
available in the home and consumed at meals, the
frequency of family meals, and parental modeling
of and support for children’s healthful eating (Fruh
et al., 2012; Haerens et al., 2008; Hammons &
Fiese, 2011). Employed mothers are noted to pur-
chase prepared foods more frequently, including
fast food and carry-out meals, consume more food
away from home, and commonly report missing
out on family meals (Devine et al., 2009).
Bauer, Hearst, Escoto, Berge, and Neumark-
Sztainer (2012) analyzed the data from Project
F-EAT, a population-based study of a sociodemo-
graphically diverse sample of 3,709 parents of
adolescents living in a metropolitan area in the
Midwestern United States. They reported that
full-time employed mothers reported fewer family
meals, less frequent encouragement of their ado-
lescents’ healthful eating, lower fruit and vegetable
intake, and less time spent on food preparation
when compared to part-time and not employed
mothers. Full-time employed fathers reported
significantly fewer hours of food preparation. In
addition, higher work-life stress between both par-
ents was associated with less healthful family food
environment characteristics, including less fre-
quent family meals and more frequent sugar-
sweetened beverage and fast food consumption by
parents.
Research on family mealtime reveals that fre-
quency of family meals is a protective factor that
may curtail high-risk behaviors among youth (Fruh
et al., 2012). For example, frequency of eating a
family meal was associated with a reduced likeli-
hood of all risk behaviors (e.g., smoking, drinking,
cannabis use, bullying) among girls and all but
fighting and having sex among boys (Levin et al.,
2012). Fruh et al. (2012) listed the following out-
comes from families eating together:
■ Teenagers who eat meals with their families
frequently are less likely to be depressed or
use drugs than those who do not eat with
their families as often. They are also less
likely to be violent, to have sex, and to expe-
rience emotional stress. Adolescents who eat
meals with their families are likely to be
more highly motivated in school and have
better peer relationships.
■ Regular shared mealtimes can increase
children’s sense of belonging and stability,
and the entire family’s feeling of group con-
nection. Many adolescents in a large national
study reported that they want to be with
their parents for most evening meals.
■ Teenagers who share meals with their fami-
lies on a regular basis tend to eat healthier
foods than those who do not. They consume
fewer high-fat, high-sugar prepared and
packaged foods, and more fruits and vegeta-
bles and other foods high in important
nutrients and fiber.
In addition, family mealtimes facilitate improving
family communication, fostering family tradition,
and teaching life skills to children. Encouraging
shared meals when possible is a way nurses can
Family Health Promotion 223
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enhance family bonding as this gives families an
opportunity to be together and communicate with
each other.
FAMILY CASE STUDIES
The following family case studies are used in the
next sections of the chapter to demonstrate how
different theoretical approaches can be used for as-
sessing and intervening in the family for health
promotion.
224 Families Across the Health Continuum
additional space for the new baby. Although the house is
spacious, it is old and needs some renovation.
This is the first marriage for Eleanor and second mar-
riage for James (James divorced 5 years ago). Eleanor
stated that the family has been successfully going through
the remarriage cycle, and Hanna and Eleanor have a pretty
good relationship. Hanna is usually withdrawn after visiting
her biological mother (summer and winter school vaca-
tions, and several holidays—generally five times a year),
who is also remarried and gave Hanna a new stepbrother
(age 2) from her current marriage. Hanna is attending an
after-school program at the same school where Eleanor
works and returns home with Eleanor. On the way home,
Eleanor picks up Dustin from the day care, which he at-
tends from 7:30 a.m. to 4:30 p.m. during the weekdays.
Hanna attends a piano lesson on Tuesdays and ballet class
on Thursdays.
Because of the family’s busy schedule, they often eat at
fast-food restaurants during the evenings (at least twice a
week), and meals at home are usually rushed and often
eaten in front of the television. Although the family tries to
eat meals together, it cannot do so because James’s job re-
quires frequent traveling, so the family often ends up eat-
ing meals without James.
When James is at home, he does outdoor chores,
whereas Eleanor usually does indoor chores. The children
usually watch television and play video games when the
couple is working at home. The couple tries to do family
activities each Sunday, and all family members attend a
local Presbyterian church. But James is generally not home
one Sunday each month because of the travel require-
ments for his job. With the exception of family vacations,
holidays, and Sundays, the Budds rarely spend time to-
gether enjoying each other’s company.
James and Eleanor seldom agree on parenting prac-
tices; whereas Eleanor is firm and detailed, James is laid-
back. James has some guilty feelings toward Hanna, thus
making him very lenient toward her. Hanna usually goes to
her dad to escape her regular duties and whenever Eleanor
asks her to complete assigned tasks. James usually accepts
Hanna’s request because of his guilty feelings, and this
makes Eleanor uncomfortable and frustrated.
Eleanor was seen by a nurse in the OB/GYN clinic for
her regular prenatal checkups. She is going through a
normal pregnancy, but she recently has experienced seri-
ous fatigue. Her additional concern is that she has a diffi-
cult time putting Dustin to bed each night. Dustin used
to go to bed easily when they lived in the apartment,
where he shared a room with Hanna. After moving to the
new house 3 months ago, where he has his own room,
Family Case Study: Budd Family
Setting: Prenatal clinic (regular prenatal checkup).
Family Nursing Goals: Work with the family members
to assist them in successful family transition and balance.
Family Members:
• James: father; 32 years old; full-time but temporarily
employed without benefits, expects to be promoted to
a permanent position soon with benefits (married
Eleanor 3 years ago).
• Eleanor: mother; 33 years old; full-time employed, a
school teacher at an elementary school with benefits,
considering being a “stay-at-home” mother after giving
birth (6 months pregnant); first marriage, married James
after giving birth to Dustin.
• Hanna: oldest child; 8 years old; daughter (from James’s
first marriage), third grade, usually a good student.
• Dustin: son; 3.5 years old; all-day preschool (private
day-care facility), developmentally on target.
• The couple is expecting a baby girl in 3 months.
Family Story:
James (32 years old) and Eleanor (33 years old) have
one daughter, Hanna (8 years old), and one son, Dustin
(3.5 years old). James is a full-time worker in a sales
business (see the Budd family genogram in Figure 8-3).
Currently, he is a full-time employee but under tempo-
rary status; he is expected to have a permanent position
soon (date is not sure) that provides benefits and covers
health insurance. Eleanor has a full-time position as an
elementary-school teacher. She wants to be a stay-at-
home mother but is afraid of losing health insurance and
family income if she quits now, so she wants to wait until
James gets a permanent full-time position with benefits.
The couple married 3 years ago; they recently moved
from an apartment to a house because the family needs
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Family Health Promotion 225
he has not been the same. Eleanor notices that he is
more energetic at night and wants to stay with her before
going to bed. In addition, Dustin has started visiting the
parents at night and staying with them during the night,
when he should be sleeping in his own bed. He has
recently complained about his tummy being upset, and
Eleanor is not sure whether he is sick or is just faking to
get attention. Dustin is excited to have a baby sister, but
he also shows some jealousy. For example, Dustin acted
like an infant baby when his parents decorated the
baby’s room and bed with pink colors.
Although James helps Hanna at night, putting Dustin
to bed is Eleanor’s job, and she is overwhelmed with
his behavior. Eleanor says that James is a good husband,
but she feels that he considers parenting to be a
mother’s role, which sometimes leaves her feeling
overwhelmed and angry. Eleanor perceives that all family
members are healthy and states that they are just a
busy family. Her additional concern is the family finances
after she quits her job. The nurse sees only Eleanor
during this time, and requests that James and the
children come for the next visit. (See the Budd family
ecomap in Figure 8-4.)
Assessment:
As explained in Chapter 3, models that nurses use to
assess family health differ. The following illustrates how
different assessments and options for interventions vary
based on the theoretical perspectives of the family.
Family Systems Theory:
The focus of the nurse’s practice from this perspective is
family as client; therefore, assessments of family members
are focused on the family as a whole. In the case study, all
members of the Budd family are affected when the mother
gives birth. Eleanor currently feels that her husband consid-
ers parenting as a mother’s role. If James continues to be
passive in his parenting role, it would cause a difficult fam-
ily transition when the baby is born. In addition, the arrival
of the new baby could make going to bed even more diffi-
cult for Dustin at night, if not resolved.
Developmental and Family Life Cycle Theory:
The family is a blended family and is in the stage of
the “families with young children” (infancy to school age)
because their oldest daughter, Hanna, is an elementary-
school child. The family is experiencing an additional
normative developmental stressor of adding a new
family member. The tasks required for this family include
adjusting to the addition of a new family member,
defining and sharing childrearing, financial and household
tasks, and realigning relationships with extended family,
parents, and grandparents. In addition, although Dustin is
Eleanor
33 yr
60
38 30 28 24
Baby girl
6 mo
65 61
M 3 yrD 5 yr
2 yr
James
32 yr
Hannah
8 yr
Dustin
31/2 yr
FIGURE 8-3 Budd family genogram.
(continued)
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226 Families Across the Health Continuum
developmentally on target, the family is experiencing a
challenge to make Dustin go to bed each night, and may
face a challenge with potential sibling rivalry.
Bioecological Theory:
In the bioecological model, nurses need to assess the mi-
crosystem (i.e., family composition and home environ-
ment), mesosystem (i.e., external environment), exosystem
(i.e., job and income), and macrosystem (i.e., community).
The Budd family consists of two parents, two children, and
a baby on the way. The couple has a white European her-
itage. The family lives in an old one-story house with four
bedrooms in an older suburban section of town. During fur-
ther interviews, the nurse found that the Budds’ house was
built before 1950 and is still under renovation.
The extended family (grandparents and siblings
of Eleanor’s side) live nearby, and Eleanor has a close
relationship with them. The extended family gets together
for most holidays; James and Hanna seem to have a tenu-
ous relationship with Eleanor’s family. The town is largely
composed of white ethnicity with 30% African American.
None of the parents or siblings of James lives nearby.
James’s dad passed away 10 years ago in a car accident;
his mother remarried 7 years ago and lives 500 miles
away. The Budds and James’s mother usually meet once a
year and talk once or twice a month via telephone. James
has an older sister who lives out of the country because of
her husband’s military service.
Family Assessment and Intervention Model:
Using the Family Systems Stressor-Strength Inventory (FS3I)
of the Family Assessment and Intervention Model, the major
family stressors include (1) Dustin’s bedtime problem,
(2) Eleanor’s upcoming birth, (3) insufficient couple time
PTA
school
Day-care
center
School
Sports
Extended
family
Work
Friends
Extended
family
Primary
health care
Work
Eleanor
Hannah
James
Dustin
Church
Girl Scouts
Strong relationship
Weak relationship
Tense relationship
Direction of
energy flow
FIGURE 8-4 Budd family ecomap.
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Family Health Promotion 227
and family playtime, (4) insufficient “me time” (specifically
Eleanor), (5) inadequate time with the children and watch-
ing television too much (children), (6) overscheduled
family calendar, and (7) parenting conflict and lack of shared
responsibility. Some job stress exists because James is still
in a temporary position and his work requires traveling.
Family strengths include (1) shared religious core, (2) family
values and encouragement of individual values, (3) affirma-
tion and support of one another, (4) successful family transi-
tion into a new blended family, (5) trust between members,
(6) support from extended family (specifically Eleanor),
(7) adequate income (current-dual career family), and
(8) ability to seek help.
Interventions:
Through assessment, nurses identify family strengths that
foster health promotion and stressors that impede health
promotion (Pender et al., 2011). Integration of the family
perspective into assessment and planning facilitates more
effective plans for health promotion (Wright & Leahey,
2013). Although the family has developmentally been suc-
cessfully going through the remarriage cycle, it is expecting
an additional life transition of adding a new family member.
For this successful transition, the couple needs to define
and share childrearing and household tasks. In order to
resolve the current parenting and role conflicts, the couple
needs to evaluate the current roles and could experiment
with being responsible for the children alternately. After the
birth of the baby, the couple may face a challenge with
potential sibling rivalry. Spending time together as a family
would promote family closeness for this blended family.
When family members engage often in leisure activities,
recreation, and exercise, they are able to cope with
day-to-day problems better (Smith et al., 2009). The
nurse should address the hurried family lifestyle and
frequent unhealthful fast food eating habit.
Family Self-Care Contract:
• Involve all family members (including children) in
establishing a family self-care contract.
• Assist the family members to share their perceived family
health issues.
• Assist the family to prioritize the goals.
• Discuss the health promotion strategies.
Family Empowerment and Family
Strengths-Based Nursing Care:
• Commend the family strengths and base interventions
on the family strengths.
• Enhance and mobilize the family strengths for problem
solving.
• Offer information/resources to help resolve parenting
conflicts.
• Offer opportunities for the family members to express
feelings about their family experiences.
Anticipatory Guidance and Offering
Information:
• Help the family to anticipate/prepare for life changes
after the birth of the baby girl.
• Encourage the family to make the necessary adjustments
(e.g., role sharing).
• Offer information about resources for health promotion
(e.g., smoking cessation, regular exercise).
Use of Rituals/Routines and Family Time:
• Assist the family to plan for family time, couple time,
and individual family member alone time.
• Explore common family leisure activities, recreation, or
exercise.
• Discuss ways to reduce the hurried family lifestyle by
utilizing resources from extended family, church, or
community.
• Assist the parents to establish bedtime routine.
• Discuss family mealtime and ways to improve healthy
eating (e.g., reduction of fast food consumption, avoiding
meals in front of TV).
Case Study: Matthews Family
Setting: School health nurse’s office (high school).
Family Nursing Goals: Work with the family to assist
it for successful family transition and balance.
Family Members:
• Andrew: father; 52 years old; part-time lecturer at a
local university (married Susan 18 years ago), first
marriage.
• Susan: mother; 50 years old; full-time employed at a
government office, second marriage with no children
from the previous marriage.
• Sophie: oldest child; 17 years old; daughter, 11th grade.
• Angela: middle child; 14 years old; daughter, 9th grade.
• Joseph: son; 11 years old; son, 6th grade.
Family Story:
Andrew (52 years old) and Susan (50 years old) have
two teenage daughters, Sophie (17 years old) and Angela
(14 years old) and one son, Joseph (11 years old). They
have been married for 18 years.
(continued)
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228 Families Across the Health Continuum
Andrew is a part-time college professor. Susan has a
full-time position as a director at a government office.
When Andrew lost his full-time job 17 years ago, the
couple moved in with Andrew’s mother (Lucy, age 86)
and lived with her for more than 5 years until Susan’s
income was sufficient to cover a mortgage and family
expenses. Since moving out of Lucy’s house, the couple
and children visit and have dinner with her every week-
end, which has become the family routine. Children are
expected to spend the night with their grandmother after
the dinner; however, recently Sophie has refused to spend
the night at grandmother’s house. Andrew’s sisters and
their families live in the same state and visit Lucy at least
once a month. Lucy has chronic health conditions, which
cause unexpected emergency department (ED) visits
(several times a year). After divorcing her ex-husband,
Susan started to study in a graduate school in a different
state, where she met Andrew. Because Susan’s family
lives far away, she barely sees them and sometimes feels
isolation and loneliness.
Andrew has been a part-time employee at local col-
leges most of his life. While Andrew has spent most of his
time working on computers at home (online teaching),
Susan has worked at a local government agency. Since
Andrew has produced minimum income, Susan provides
for most of the family expenses.
The house has five rooms: master bedroom, Andrew’s
office (he stays at home most of the time), and three
rooms for the children. The girls used to share the same
room until the family added an additional room last year so
the children could have their own room. Since moving to a
new room upstairs, Sophie brings her friends home fre-
quently and a couple of close friends spend the night with
her on weekends and during the summer break. The par-
ents caught Sophie and her friend leaving the house se-
cretly to meet a group of boys after midnight; Sophie was
grounded for a month as a result. Last month, Susan found
Sophie and her friend on the street (instead of going to
school) while she was driving to work. Sophie’s boyfriend
lives nearby, and they meet frequently at the park or each
other’s home. Susan suspects that Sophie might have a
sexual relationship with her boyfriend.
This is the first marriage for Andrew and second mar-
riage for Susan. Susan was a survivor of domestic violence
from the first marriage (which lasted less than 1 year).
Because Andrew has strong family-centered values, they
eat dinner as a family and once or twice a week with
Andrew’s mother (Lucy). Sophie has started skipping the
family dinners frequently, stating that she is not hungry.
She also has been experiencing several fainting episodes
due to irregular eating habits. She frequently skips breakfast
and lunch. The couple noticed that Sophie is eating fast
food in her room or eating food after midnight by herself.
Sophie’s eating pattern is getting irregular, and Angela has
begun to imitate her older sister’s pattern and is refusing to
participate in family dinners. Both girls are generally skip-
ping breakfast, although Susan has made various attempts
to get them to eat breakfast.
All children are in good health and have pleasant dispo-
sitions. The children are generally happy, but loud at home
and frequently fight and yell at each other. The girls argue
over clothes and cleaning and are frequently cranky and
difficult for the couple to deal with. Andrew and Susan
sometimes argue because of different parenting styles:
whereas Susan wants to raise the children in a Christian
way, Andrew opposes Susan’s parenting belief. Sophie is
becoming rebellious and fights with Andrew frequently.
She is losing interest in her schoolwork.
Earlier in their married life, Susan mainly was responsi-
ble for household chores. Sophie expressed resentment
against her father regarding his minimal house chore
contribution. Over the years, as a result of numerous
heated arguments, Andrew agreed to share a significant
portion of household responsibilities, including outdoor
chores. Still, Susan spends weekends doing grocery
shopping, laundry, housecleaning, and attending to the
children. During the weekdays, the couple takes the
children to various lessons (piano, violin, cello, art, karate,
and soccer), which sometimes causes schedule conflicts
and builds marital tension.
Andrew and Susan have mutual friends, but seldom
participate in social gatherings as a couple. Susan usually
takes the children to church events, and Andrew takes
Joseph to soccer practices or sports events. Susan feels
social support and comfort by attending church and
church-related activities; but Andrew considers it as his
wife’s overcommitment to religion. The family is affiliated
with a Methodist church, which they used to attend every
Sunday; Andrew stopped going to church 6 months ago.
Sophie sometimes refuses to go to church as a family.
Because of Susan’s full-time job and frequent family gath-
erings with in-laws, and Lucy’s frequent ED or hospital
admissions, Susan has limited time to socialize with her
own friends. Over the years, Susan has experienced
chronic fatigue and stress from caring for the children
and handling family responsibilities. She also experiences
insomnia and hot flashes due to menopause. Over the
last 3 years, she has gained 30 pounds and is trying to
lose weight without success. (See the Matthews family
genogram in Figure 8-5 and family ecomap in Figure 8-6.)
3921_Ch08_205-236 05/06/14 11:03 AM Page 228
Family Health Promotion 229
Joseph
11 yr
Angela
14 yr
Susan
50 yr
D 23 yr ago
Andrew
52 yr
Lucy
86 yr
Sophie
17 yr
FIGURE 8-5 Matthews family genogram.
Strong relationship
Weak relationship
Tense relationship
Direction of
energy flow
Church
Work
Sports
extracurricular
activities
School
nurse
Friends
School
Church
Health
insurance
(no)
Friends
Lucy
(Andrew’s
mother)
Extended
family
Joseph
Andrew
Sophie
Susan
Angela
FIGURE 8-6 Matthews family ecomap.
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230 Families Across the Health Continuum
Assessment:
Assessments of family members should be focused on the
family as a whole. If Susan and/or Sophie’s health status is
declining and/or if Lucy’s health deteriorates, the remaining
members of family will experience difficulty adjusting to the
changes. Andrew and Susan experience difficult family tran-
sitions raising two teenagers who show rebellious attitudes
and an unhealthy lifestyle.
Developmental and Family Life Cycle Theory:
The family is a nuclear family and is in the stage of the
“families with adolescents” because their oldest daugh-
ter, Sophie, is in high school. The tasks required for this
family include allowing adolescents to establish their own
identities but still be part of the family; thinking about
the future, education, jobs, and working; and increasing
roles of adolescents in family, cooking, repairs, and
power bases.
Family Systems Theory:
Although the Matthews family looks healthy, there is an
indication of moving to family vulnerability. When family
members exhibit symptoms of an illness, other family
members become aware that an individual has become
ill. The Matthews family does not engage in activities to
improve and maintain the health of individual members
and promote family functioning. Andrew and Susan exer-
cise infrequently. Although Susan takes the children to
pediatric and dental (including orthodontic) clinics for reg-
ular checkups and maintenance, Susan skips her annual
checkup. Andrew is a heavy drinker and smoker. Since
Andrew does not have health insurance, he only visits a
clinic when he feels sick. He does not have a plan to pur-
chase private health insurance due to financial reasons.
Sophie has recently experienced fainting episodes. Susan
suspects that Sophie is becoming sexually active, but So-
phie denies it and refuses to receive the human papillo-
mavirus (HPV) vaccine. Angela and Joseph usually stay
home watching TV or using the computer instead of en-
gaging in physical activities. Due to the overscheduled
family calendar and work demands, they eat fast food fre-
quently or use frozen meals. In addition, the family does
not have regularly scheduled family meetings to problem-
solve for family risk reduction. Susan’s increasing fatigue,
Lucy’s frequent ED visits, and Sophie’s unhealthy lifestyle
could lead to the increased vulnerability.
Bioecological Theory:
The Matthews family consists of two parents and three chil-
dren. Although the family does not live with Lucy, Lucy’s
influence is significant. Andrew has African American
heritage with some European and Native American
ancestors. Susan is biracial (50% Asian and 50% African
American). The family lives in a one-story house with five
bedrooms in a middle-class neighborhood. A community
park is nearby the family residence, and the children hang
out there with other children occasionally. The town is
largely composed of white ethnicity with a small propor-
tion of African Americans and Asian Americans.
Andrew’s sisters and their families live in the same state,
and the family has a close relationship with them. The
extended family gets together at least once a month. The
Matthews family visits Lucy every week. Susan’s parents
passed away and she has an older sister who lives out of
the country. Susan and her sister communicate with each
other via e-mail or phone, talking as needed once or twice
a month. Susan has two brothers whom she usually sees
once every other year.
Family Assessment and Intervention Model:
Using the Family Systems Stressor-Strength Inventory
(FS3I) of the Family Assessment and Intervention Model,
the family strengths include (1) family values and en-
couragement of individual values, (2) parents’ value of
children’s education, (3) trust among family members,
(4) support from extended family and church, (5) ade-
quate income, (6) shared religious core, and (7) ability
to seek help.
The major family stressors include (1) children’s
poor/irregular eating habits (including skipping meals),
(2) dissolved dinnertime routine, (3) insufficient couple
time and family playtime, (4) insufficient “me time”
(specifically Susan), (5) inadequate time with the children
and spending too much time on television and computer,
(6) overscheduled family calendar, (7) Lucy’s frequent
ED or hospital admissions, and (8) lack of parenting skills
and parental conflict. Some job stress exists because
Andrew is still in a temporary part-time position.
Family Nursing Interventions:
Healthy families have both together family time and individ-
ual family member alone time (Denham, 2011; Imber-Black,
2011; Loveland-Cherry, 2011). The family experiences diffi-
cult family transitions in raising two teenagers who show
rebellious attitudes and an unhealthy lifestyle.
The family needs to plan “family time.” Having family
activities or leisure time would bring a sense of together-
ness. Considering the benefits of family mealtimes for
families with teenagers, the family needs to make a
concerted effort to establish family mealtime routines,
and each member should make that family mealtime a
priority and let no other activity interfere with it.
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Family Health Promotion 231
Families with teenagers may require help in meeting
both the needs of the family as a whole and members’
individual needs. To find a balance, each family member
should have time alone to develop a sense of self and to
focus on growth. Andrew and Susan need improved cou-
ple time by modifying the overscheduled family calendar.
In addition, the family needs increased sharing of house-
hold responsibilities. There is a need to redefine and
negotiate the current family roles. Many of Susan’s current
roles could be shared by other family members.
The parents do not seem to be good role models for
the children relative to physical exercise and healthy eating
style. Nurses need to address healthy lifestyle practices
such as good eating habits, good sleep patterns, proper
hygiene, and other positive health practices, as these are
passed from one generation to another. If the couple initi-
ates a health behavior change, the children would likely
make a change too. For example, if Susan changes her
eating patterns, perhaps by eating healthy meals, the
children would change their eating patterns. The father’s
involvement is especially important for this family as a role
model for the son, who will be a teenager soon.
Family Self-Care Contract:
• Involve all family members (including children) in
establishing a family self-care contract.
• Assist the family members to share their perceived family
heath issues.
• Encourage the family to discuss health promotion
strategies.
Family Empowerment and Family
Strengths-Based Nursing Care:
• List the family strengths and relate them to the character-
istics of a healthy family.
• Use family strengths to balance and overcome existing
problems.
• Offer opportunities for the family members to express
feelings about their family experiences.
• Evaluate the current family roles and assist the family in
establishing family role sharing.
Anticipatory Guidance and Offering
Information:
• Offer resources to resolve the current health issues
(i.e., management of menopause symptoms and eating
disorders).
• Offer information for health promotion (e.g., exercise and
healthy eating for the whole family; healthy eating and
safer-sex education for the girls).
• Offer resources for successful parenting for teenagers
and conflict resolution.
• Assist individual members in health promotion.
• Susan: stress management skills (e.g., exercise, Yoga,
time for self).
• Andrew: weight loss strategies (i.e., exercise, healthy
eating, and alcohol and smoking cessation).
• Children: time management (related to watching televi-
sion and using the computer) and physical activities.
Use of Rituals/Routines and Family Time:
• Encourage the family to schedule weekly family time
and/or family meeting.
• Help the family to explore family activities by consulting
local newspapers, family magazines, and community
agencies for activities that might interest the entire
family, and afterward encourage them to continue
these activities.
• Assist the parents in the family to arrange for couple time
and individual time.
• Discuss ways to decrease the children’s after-school
activities.
Family Meals and Healthy Eating:
• Assist the family to establish family meal routines.
• Discuss ways to improve healthy eating (e.g., reduction
of fast food consumption).
• Experiment with premade breakfast meals (e.g., protein
bars, fruit).
SUMMARY
This chapter provides an overview of family health
promotion by defining family health and health
promotion, introducing family health promotion
models, and describing internal and external sys-
tems that influence family health promotion. The
two case studies presented in this chapter illustrate
family health promotion assessment and family
nursing intervention strategies. The following out-
lines the major learning points emphasized in this
chapter on family health promotion:
■ Fostering the health of the family as a unit and
encouraging families to value and incorporate
health promotion into their lifestyle are essen-
tial components of family nursing practice.
■ Health promotion is learned within families,
and patterns of health behaviors are formed
and passed on to the next generation.
■ A major task of the family is to teach health
maintenance and health promotion.
3921_Ch08_205-236 05/06/14 11:03 AM Page 231
■ The role of the family nurse is to help
families attain, maintain, and regain the
highest level of family health possible.
■ Family health is a holistic, dynamic, and
complex state. It is more than the absence of
disease in an individual family member or the
absence of dysfunction in family dynamics. In-
stead, it is the complex process of negotiating
day-to-day family life events and crises, and
providing for quality of life for its members.
■ Family health promotion refers to activities
that families engage in to strengthen the
family unit and increase family unity and
quality of family life.
■ External ecosystem influences on family
health include such things as the national
economy, family and health policy, societal
and cultural norms, media, and environmen-
tal hazards, such as noise, air, soil, crowding,
and chemicals.
■ Internal ecosystem influences include family
type and developmental stage, family lifestyle
patterns, family processes, personalities of
family members, power structure, family role
models, coping strategies and processes,
resilience, and culture.
■ Health and family policies at all governmen-
tal levels affect the quality of individual and
family health.
■ Health promotion advertisements have
generally targeted the more health-conscious
middle class, rather than the vulnerable and
underserved who are often the targets for
alcohol and tobacco advertising campaigns.
■ Families who are flexible and able to adjust
to change are more likely to be involved in
health-promoting activities.
■ Vulnerable families are coping with a pileup
of stressors and may be unable to focus on
activities to enhance family health.
■ Low-income families may focus less on
health promotion and more on basic needs,
such as obtaining shelter, adequate food, and
health care.
■ Middle-class families are skimping on health
promotion, such as dental care, as they face
current economic struggles.
■ Through verbal and nonverbal communica-
tion, parents teach behavior, share feelings
and values, and make decisions about family
health practices.
■ Different cultures define and value health,
health promotion, and disease prevention
differently. Clients may not understand or
respond to the family nurses’ suggestions for
health promotion because the suggestions
conflict with their traditional health beliefs
and values.
■ A primary goal of nursing care for families
is empowering family members to work
together to attain and maintain family
health by focusing on family strengths,
competencies, and resources.
■ Health behaviors must be relevant and
compatible with the family structure and
lifestyle to be effective and useful to the
family.
■ The goal of the family nurse is to facilitate
family adaptation by empowering the family
to promote resilience, reduce the pileup of
stressors, make use of resources, and negotiate
necessary change to enhance the family’s abil-
ity to rebound from stressful events or crises.
■ Family health promotion should become a
regular part of taking a family history and a
routine aspect of nursing care.
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CHAPTER WEB SITES
Government Web Sites
■ The Affordable Health Act: Key feature of the law.
http://www.healthcare.gov/law/features/index.html
■ A more secure future.
http://www.whitehouse.gov/healthreform/healthcare-
overview#healthcare-menu. Retrieved December 8, 2012.
■ Dietary Guidelines for Americans—U.S. Department of
Agriculture: www.cnpp.usda.gov/DietaryGuidelines.htm
■ Dietary Guidelines for Americans 2010—Healthy People:
http://health.gov/dietaryguidelines/2010.asp
■ Dietary Guidelines for Americans 2015—Healthy People:
http://health.gov/dietaryguidelines/2015.asp
■ Low-cost insurance for children and teens—Healthy
Families—California: www.healthyfamilies.ca.gov
■ Services for Families—Administration for Children and Families:
http://www.acf.dhhs.gov/acf_services.html
■ Providing health information to prevent harmful exposures and
diseases related to toxic substances—Agency for Toxic Substance and
Disease Registry: www.atsdr.cdc.gov
■ Preventing or controlling those diseases or deaths that result from
interactions between people and their environment—National Center
for Environmental Health: www.cdc.gov/nceh
■ Understanding how the environment influences the development and
progression of human disease—National Institute of Environmental
Health: www.niehs.nih.gov
Institution Web Sites
■ American Academy of Pediatrics: SafetyNet Resources
http://safetynet.aap.org
■ International Institute for Health Promotion:
www.american.edu/academic.depts/cas/health/iihp
■ International Union for Health Promotion and Education:
http://www.iowapublichealth.org/xr/ASPX/RecordId.10305/
rx/IphiRecordDetails.htm
■ Institute of Medicine, Board on Health Promotion and Disease
Prevention:
www.iom.edu/lOM/lOMHome.nsf/Pages/Health_Promotion_and_
Disease_Prevention
■ Research and Training Center on Family Support and Children’s
Mental Health: www.rtc.pdx.edu
■ Berkeley Center for Working Families:
http://wfnetwork.bc.edu/berkeley/outreach.html
■ Family Support America: www.familysupportamerica.org
■ National Council on Family Relations: www.ncfr.com
■ National Center for Families: www.nationalcenter.com
Other Resources
■ Health Promotion in Ontario, across Canada, and in other parts of
the world—Health Promotion Bookmarks/Hot Links:
www.web.net/~stirling
■ Effective family programs for prevention of delinquency—
Strengthening America’s Families—Office of Juvenile Justice
and Delinquency Prevention: www.strengtheningfamilies.org
■ National Clearinghouse on Families & Youth—NCFY:
www.ncfy.com
■ Families First: Making Families Last: www.familiesfirst.org
■ Managing Your Dual Career Family: www.dr-
jane.com/chapters/Jane133.htm
■ The National Partnership for Women and Families:
www.nationalpartnership.org
■ Parents Without Partners: www.parentswithoutpartners.org
■ Helping to support and educate stepfamilies—Stepfamily Network
Inc.: www.stepfamily.net
■ Parenting and Family: home.about.com/parenting
■ Campaign for Tobacco-Free Kids: www.tobaccofreekids.org
■ Family mealtime—West Virginia University Extension Service:
http://www.wvu.edu/~exten/infores/pubs/fypubs/wlg129
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237
Families Living
With Chronic Illness
c h a p t e r 9
Joanna Rowe Kaakinen, PhD, RN
Sharon A. Denham, DSN, RN
C r i t i c a l C o n c e p t s
■ Chronic illness is a global phenomenon with the potential to worsen the overall health of the nation’s people
and limit the individual’s capacity to live well.
■ Social determinants of health and family health routines can increase the risks for a chronic condition.
■ Healthy lifestyle behaviors and early detection or screening may prevent some forms of chronic disease.
■ Chronic illness presents differing challenges to individuals and their family members during the life span.
■ Chronic illnesses that occur at birth or early childhood are most likely to be genetic and require special attention
during developmental changes and across the life span.
■ Nurses must use evidence-based knowledge to empower families with the information, skills, and abilities to manage
chronic diseases over the life course and prevent complications and comorbidities.
■ Family-focused care is important for prevention and management of chronic illness when it occurs; this involves
intentional nursing action that meets both the individual and family needs.
■ Knowledge about disease self-management and adherence to a therapeutic medical regimen is essential for individuals
and their family members if they are going to prevent additional complications.
■ Nurses use various actions (e.g., teach, coach, demonstrate, counsel) to assist individuals and their family members
to cope with the stress of uncertainty, powerlessness, and anticipatory and ambiguous losses that accompany chronic
illnesses.
The term chronos is the root word for “chronic” and
refers to time. Chronic illness describes a health
condition that lasts longer than 6 months, is not
easily resolved, and is rarely cured by a surgical
procedure or short-term medical therapy (Miller,
2000). When diagnosed with a chronic condition,
it becomes necessary for the individual and his or
her family to learn to manage the disease or disor-
der while living a quality life. Chronic illness not
only affects the quality of life of the individual, but
significantly affects all members of the family.
As individuals struggle to live with chronic con-
ditions, family members are challenged to balance
the needs of the ill family member with their own
3921_Ch09_237-276 05/06/14 11:05 AM Page 237
needs and the needs of the family as a whole. Indi-
viduals with a chronic condition often battle to
stay healthy, live active lives, retain a high quality
of life, and prevent complications. This battle pri-
marily is waged within the confines of the family.
When an individual is diagnosed with a chronic ill-
ness, whatever it might be, family members must
incorporate unexpected changes into their roles
and daily processes, manage disabilities imposed,
and identify ways to do it with the resources they
have available and within a context of uncertainty.
Managing uncertainty is a significant concern for
individuals and families living with chronic illness
(Hummel, 2013a).
Chronic illnesses often require complex care,
and many people have more than a single condi-
tion. People with chronic illnesses can experience
complications or comorbidities that make situa-
tions even more difficult. For example, a person
diagnosed with type 2 diabetes may also have hy-
pertension, hyperlipidemia, and neuropathy. A per-
son with Parkinson’s disease may also have a
serious sleep disorder, constipation, chronic pain,
and Lewy body dementia. Often, with a chronic ill-
ness, individuals require care from multiple physi-
cians, specialists, and a panoply of prescription
drugs. Care would benefit from coordination across
disciplines. The complex needs can create havoc
for families with limited resources as they attempt
to manage many thorny situations faced daily. The
holistic approach of nurses is crucial to the individ-
ual and family adaptation and management of
living with chronic illness across the life span.
Many chronic diseases are altered and sometimes
worsen over the life course. Chronic illnesses affect
the lives of infants, children, adolescents, young
adults, older adults, elderly, and the old-old. These
diseases affect the physical, emotional, intellectual,
social, vocational, and spiritual functioning of the
person with the condition and family members.
Wide variations exist in the ways different chronic
illness conditions affect physical and mental health,
employment, social life, and longevity.
Differences in the ways families accommodate a
chronic condition also exist and are influenced not
only by the level of disability and associated symp-
toms, but also by individual and family factors. Fam-
ilies differ in their perceptions about disability, in their
backgrounds, and in their access to needed resources,
for example. Care responses differ depending on
whether the symptoms are constant (cerebral palsy),
episodic (migraine headaches), relapsing (sickle cell
anemia), worsening or progressive (Parkinson’s dis-
ease or certain types of cancer), or degenerative
(Alzheimer’s disease or Rhett syndrome). Details of
the unique individual situation vary further with the
age of the individual, previous family experiences,
level of disease complexity, individual’s motivation or
ease in managing the illness, unique family member
relationships, and distinct personalities and values.
Regardless of the type of chronic illness experienced,
however, one thing remains the same: various family
members are likely to be involved at several levels.
Because family members are the most enduring care
providers, they might be viewed as the biggest re-
source for individual care over time. Family members
generally offer the constancy and continuity of care
needed for the most optimal health outcome. Most
health professionals come and go in the lives of
persons with chronic conditions, offering medical
management, education, and counseling for brief
times. But it is generally family members that provide
the needed ongoing and persistent care across time.
The purpose and focus of this chapter is to de-
scribe ways for nurses to think about the impact of
chronic illness on families and to consider strate-
gies for helping families manage chronic illness.
The first part of this chapter briefly outlines the
global statistics of chronic illness, the economic
burden of chronic diseases, and three theoretical
perspectives for working with families living with
chronic illness. The majority of the chapter de-
scribes how families and individuals are challenged
to live a quality life in the presence of chronic ill-
ness and how nurses can assist these families. Two
case studies are presented in this chapter: one a
family who has an adolescent with diabetes and one
a family helping an elderly parent and grandparent
manage living with Parkinson’s disease. Although
every family and illness experience is completely
individual, many of the trials that these two families
endure are universal to other families living with
different chronic illnesses.
CHRONIC ILLNESS: A GLOBAL
CONCERN
Chronic illness is a global issue and is the leading
cause of mortality and disability in the world, rep-
resenting 63% of all deaths (World Health Organ-
ization [WHO], 2013a). Disease rates from these
238 Families Across the Health Continuum
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conditions are accelerating globally, advancing
across every region and pervading all socioeco-
nomic classes (WHO, 2013b). “Four of the most
prominent chronic diseases—cardiovascular dis-
eases (CVD), cancer, chronic obstructive pulmonary
diseases and type 2 diabetes—are linked by com-
mon and preventable biological risk factors, no-
tably high blood pressure, high blood cholesterol
and overweight, and by related major behavioral
risk factors: unhealthy diet, physical inactivity and
tobacco use” (WHO, 2013b).
Out of the 36 million people who died from
chronic disease in 2008, 9 million were under the
age of 60 years and 90% of those premature deaths
occurred in low- and middle-income countries
(WHO, 2013a). Cardiovascular disease is the num-
ber one cause of death globally, with 30% of
all global deaths being attributed to cardiovascular
disease (WHO, 2013c). Cardiovascular disease
morbidity and mortality could be reduced by ad-
dressing risk factors such as tobacco use, unhealthy
diet, obesity, physical inactivity, high blood pres-
sure, diabetes, and raised lipids (WHO, 2013c).
Approximately 13% of global deaths are from
cancer, with the top kinds of cancer deaths being
lung, stomach, liver, colon, and breast cancer
(WHO, 2013d). According to the WHO, tobacco
use is the most important risk factor for cancer as
it is estimated that it causes 22% of global cancer
deaths and 71% of the global lung cancer deaths
(2013d). In addition, tobacco use is the primary
cause of chronic obstructive disease, such as em-
physema and asthma, worldwide.
In 2012, approximately 347 million people glob-
ally had diabetes and it is projected to be the sev-
enth leading cause of global deaths by 2030
(WHO, 2013e). Worldwide, obesity has doubled
since 1980 (WHO, 2013f). We are at the cusp of a
chronic disease epidemic that if not attended to
now will result in an even more serious crisis situ-
ation in the near future.
Surveillance of Chronic Illness
How do we know how many people have chronic
illness and whether the problem is getting better
or worse? In public health, one approach is the
availability of surveillance data that are systemati-
cally collected over time. This information is used
to analyze a problem and help identify trends of
change over time. In the United States and Canada,
the Behavioral Risk Factor Surveillance System
(BRFSS) is a survey used to collect national infor-
mation regularly. This is a state-based or province-
based system of health surveys conducted through
phone surveys. The survey tracks health risk factors
and uses the findings to improve the health of the
nation’s people. For example, in 2011 in the United
States, 57.1% of the population had at least one al-
coholic drink within the last 30 days and 18.3% of
those in the nation were binge drinkers (BRFSS,
2011). The Centers for Disease Control and Pre-
vention ([CDC]; 2011) defines binge drinking as a
pattern of drinking that brings a person’s blood al-
cohol concentration (BAC) to 0.08 grams percent
or above. This typically happens when men con-
sume five or more drinks, or when women consume
four or more drinks, in about 2 hours. These base-
line data have not previously been tracked, but can
be looked at in future years. Over the next few years,
surveys will collect additional data about alcohol use
and the problem of binge drinking. Therefore, it
will be possible to compare and analyze alcohol
abuse and bring drinking as a risk factor on chronic
illness trends and concerns.
Some other survey examples follow. Another
survey instrument used to collect information
about chronic illness risks is the National Health
and Nutrition Examination Survey (NHANES,
2011) in the United States and the Food and
Nutrition Surveillance in Canada. These national
surveys are used to learn about the prevalence and
distribution of chronic diseases and risk factors.
The National Cardiovascular Data Registry is a
database used to capture information about partic-
ular individuals. The National Program of Cancer
Registries in the United States and the Canadian
Cancer Registry are both surveillance organiza-
tions that focus on collecting, monitoring, and in-
terpreting trends in cancer risks among a variety of
populations. Large cohort studies, such as the
Framingham Heart Study (2012), provide retro-
spective information about groups of people that
share similar experiences. The Canadian Tobacco
Use Monitoring Survey (CTUMS) (2010) describes
the smoking trends in Canada from 1999 to 2010.
Other data regarding chronic diseases are identified
through individual records, from insurance compa-
nies, and with reviews of death certificates.
Internationally, surveys have revealed that the
burden of chronic disease in adults and children is
increasing in low- and middle-income countries,
Families Living With Chronic Illness 239
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and despite increasing awareness and commitment
to address chronic illness, global actions to imple-
ment cost-effective interventions are inadequate
(Alwan et al., 2010). The cause of the increase of
chronic diseases in these countries is not easy to
pinpoint. Most of the research on chronic illness
factors has been conducted in developed countries.
Economic Burden of Chronic Illness
Chronic diseases are not only common, they are
costly. In 2011, the Harvard School of Public
Health released a report called The Global Economic
Burden of Non-communicable Diseases. This report
noted that more than 60% of deaths (mostly car-
diovascular diseases, diabetes, cancer, and chronic
respiratory diseases) occur from noncommunica-
ble causes (Bloom et al., 2011). This report indi-
cated that the number of worldwide cases of all
sites of cancer in 2010 was 13,313,111, and predic-
tions are that by 2030 the number of cases will
likely be close to 21,503,563. In 2010, cancer med-
ical costs were $153,697 million, with nonmedical
costs at $67,072 million, and income losses at
$68,969 million. It is likely that these costs will
double in the next 15 years.
In 2010, diabetes cost the global economy about
$500 billion in U.S. dollars with projections ex-
pected to be about $745 billion in 2030. The na-
tional economic burden of Parkinson’s disease
exceeded $14.4 billion in 2010 (approximately
$22,800 per patient) (Kowal, Dall, Chakrabarti,
Storm, & Jain, 2013). Indirect costs of Parkinson’s
disease (e.g., reduced employment) were conserv-
atively estimated at $6.3 billion (or close to $10,000
per person with Parkinson’s disease) (Kowal et al.,
2013). When chronic illness is considered, it is use-
ful to recognize that besides the associated dollar
costs of various chronic diseases, there is also a loss
in productivity and wages due to absenteeism.
In Canada, chronic diseases cost an estimated
$90 billion a year in lost productivity and health
care costs (Mirolla, 2004). Also in Canada, the
economic burden of the three major lung diseases—
cancer, asthma, and chronic obstructive pulmonary
disease—was $12 billion in 2010 (Theriault, Hermus,
Goldfarb, Stonebridge, & Bounajm, 2012). Given
the growing number of elderly in Canada, this eco-
nomic cost for chronic lung disease is expected to
double by 2030. In Canada, the number of people
smoking has declined; still, 37,000 people die every
year related to tobacco smoke, which is one person
every 12 minutes (Health Canada, 2009). As in
Canada, the number of people smoking in the
United States is declining; yet each year in the
United States, about 443,000 people die of a smok-
ing-related illness, and smokers die 14 years earlier
than nonsmokers (Centers for Disease Control and
Prevention [CDC], 2011). Indirect costs, including
loss of productivity when an ill person cannot work
and the loss of productivity in the workplace when
family leave is taken, was estimated to be $8.6 billion.
There are approximately 2 million informal family
caregivers with an economic burden contribution es-
timated at $25 billion (Hollander, Lui, & Chappell,
2009; Keefe, 2011).
Economic costs for chronic illnesses such as dia-
betes are continuing to increase. In Canada, the eco-
nomic cost of diabetes was approximately $12.2
billion in 2010, which accounts for about 3.5% of
public health care spending in Canada (Canadian
Diabetes Association, 2009). According to a study
commissioned by the American Diabetes Association
(2008), in 2002 diabetes was reported to cost Amer-
icans $174 billion annually. In 2007 this cost was es-
timated to have increased by 32% for a total cost
of $218 billion (Dall et al., 2010). A disproportionate
percentage of these costs result from treatment and
hospitalization of persons with diabetes-related com-
plications. The study findings suggest that one
of every five health care dollars is spent caring for
someone diagnosed with diabetes. Financial costs
for this disease are even greater when the family pays
for additional health care needs, such as over-
the-counter medication and medical supplies, addi-
tional visits to optometrists or dentists, health
complications that occur before the diabetes is di-
agnosed, lost productivity at work for the individual
and family members, and costs for informal caregiv-
ing. Because of continued emphasis on treatment of
disease and related complications, rather than pre-
vention, the cost of diabetes continues to climb. In
fact, only a small amount of the money spent on
diabetes is on research, education, or prevention
(Dall et al., 2010).
A study conducted to quantify the costs of
chronic disease, the potential effects on employ-
ers, the government, and the United States econ-
omy found that the seven most common chronic
diseases—cancer (broken into several types), dia-
betes, hypertension, stroke, heart disease, pul-
monary conditions, and mental disorders—affect
240 Families Across the Health Continuum
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133 million Americans (DeVol, 2008). These dis-
eases have large-ticket economic costs of $1.3 tril-
lion annually, along with potential for lost work and
productivity. Findings from the DeVol (2008) study
also have the following indications:
■ At the current rate, a 42% increase in cases
of the seven chronic diseases is predicted by
2023, with $4.2 trillion in treatment costs
and lost economic output.
■ Modest improvements in preventing and
treating diseases could avoid 40 million cases
of chronic disease by 2023, with the economic
effect of chronic illness decreased by 27% or
$1.1 trillion annually from the current cost.
■ Decreased obesity rates, a large risk factor
linked with chronic illness, could result
in productivity gains of $254 billion and
avoid $60 billion in annual treatment
expenditures.
Many with chronic illnesses fear they will be un-
able to afford needed medical care, a fear not un-
founded as medical costs for those with chronic
illness tend to be higher. Families with a child or
an adult member with a chronic condition often
face economic challenges. For example, in diabetes
management, although medical insurance may
cover the costs of medications and supplies such as
syringes and glucose testing strips, other health-
promoting activities might require out-of-pocket
expenses. A person with diabetes needs to eat a bal-
anced diet, which requires the purchase of foods
high in nutritional value, food that might be more
expensive than less healthy foods.
Lay caregivers, although posing far less of an
economic burden on the health care system, come
with their own set of costs. Still, the cost of funding
caregiver services and support is small compared
with the value of their contributions (Feinberg,
Reinhard, Houser, & Choula, 2011). Policy recom-
mendations that can make these economically
friendlier unpaid caregivers’ services (Gibson &
Houser, 2007) less burdensome to families include
the following:
■ Implementing “family-friendly” workplace
policies (e.g., flextime, telecommuting).
■ Preserving and expanding the protections of
the Family and Medical Leave Act of 1993
and updated in 2008 (U.S. Department of
Labor, 2013).
■ Expanding funding for the National Family
Caregiver Program, which was established in
2000 to provide funding to states and territo-
ries based on the number of people over
70 years of age. It supports families and infor-
mal caregivers to keep loved ones at home as
long as possible (U.S. Department of Health
and Human Services [USDHHS], 2012).
■ Providing adequate funding for the Lifespan
Respite Care Act (2006). This program coor-
dinated systems of accessible, community-
based respite care services for family
caregivers of children and adults of all ages
with special needs (Administration for
Community Living, 2013).
■ Providing a tax credit for caregiving.
■ Permitting payment of family caregivers
through consumer-directed models in
publicly funded programs (e.g., Medicaid
home, community-based services waivers).
■ Assessing family caregivers’ own needs through
publicly funded home and community-based
service programs and referral to supportive
services.
Costs Associated With Children With Special
Health Care Needs
In addition to the health care provided in clinical
settings, children with chronic special health care
needs (SHCN) often require illness management
and health maintenance in the home. The in-
creased time and care demands of SHCN can make
it difficult for family caregivers to be employed
fully; emotional stress and financial burdens can re-
sult. A child might need special therapy such as
physical, speech, or occupational. Certain illnesses
require constant out-of-pocket health care (such as
autism, cystic fibrosis, or mental health needs) that
can range from $2,669 to $69,906 per year, com-
pared to $676 to $3,181 for families with non-
SHCN children (Lindley & Mark, 2010). In
addition, these families may have to pay more for
everyday living expenses, such as water, heating, or
special clothes or equipment, that are not included
in their health plan. Parents of SHCN may lose pay
as they need to take days off from work to care for
their child (Lindley & Mark, 2010).
Parents working in low-income jobs often do
not receive adequate health insurance benefits.
Some families earn too much money to qualify for
public subsidies but not enough money to cover the
Families Living With Chronic Illness 241
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health care expenses of raising a child with SHCN.
Compared with children in higher-income (and
also lowest-income) households, children living in
such “near-poor” families are more likely to have
gaps in insurance coverage and more likely to be
uninsured (Looman, O’Conner-Von, Ferski, &
Hildenbrand, 2009). Eleven percent of uninsured
children did not receive needed family support
services related to chronic illness care, compared
with 7.7% of children with public insurance and
2.7% of privately insured children (USDHHS,
Health Resources and Services Administration,
Maternal and Child Health Bureau, 2008). Families
who lack health insurance are more likely to report
that, although health and family support services
are needed, they were not received. In addition,
families can be greatly challenged as they try to bal-
ance chronic illness costs against other member
and household needs. Keep in mind that costs for
the individual and his or her family can also be
measured in loss of quality of life.
THEORETICAL PERSPECTIVES:
WAYS TO UNDERSTAND
CHRONIC ILLNESS
Theory provides a common language and foundation
to understand abstract concepts and their connec-
tions. This chapter explains three models that can be
used by family nurses to explore the impact of
chronic illness on families: Rolland’s Chronic Illness
Framework, the Family Management Style Frame-
work (Knafl & Deatrick, 1990, 2003), and the Fam-
ily Health Model (FHM; Denham, 2003). These
models provide unique perspectives on assessment,
goal planning, nursing actions, and outcome evalua-
tion using a family-focused point of view.
Rolland’s Chronic Illness Framework
Chronic illnesses can be categorized by their traits,
as outlined in Rolland’s (1987) Chronic Illness
Framework (see Chapter 3). This framework out-
lines how the following aspects come together
in families and explains how families with similar
illness stories adapt differently:
■ Onset of the illness (acute or gradual)
■ Level of disability resulting from the condi-
tions (capacitating or incapacitating)
■ Outcome of the illness (fatal, unpredictable,
nonfatal)
■ Stability of the disease (progressive, constant
vs. relapsing symptoms)
■ Time phase of the chronic illness (diagnosis,
mid-illness, or terminal phase).
In Rolland’s framework, the above elements of
chronic illness affect family functioning, strengths,
and vulnerabilities. For example, although some
chronic conditions involve primary disabilities,
such as those occurring from birth anomalies, other
conditions, such as strokes, myocardial infarctions,
secondary blindness, or kidney failure, are acquired
disabilities resulting from lifestyle patterns or de-
layed or ineffective treatment of other conditions.
The reaction and adaptation of the individual and
family to a chronic condition differs according to
whether the disability is considered on-time and
expected versus off-time and unexpected. Likewise,
although some people with chronic conditions have
lives fraught with pain, depression, and mental or
physical difficulties, others experience satisfying
lives with only minimal difficulties.
Family Management Style Framework
The Family Management Style Framework
(FMSF) was designed to help nurses understand
how families who have a child with a chronic con-
dition integrate management of the chronic illness
for the child into the everyday living needs and rou-
tines of the family as a whole. The original work on
the development of the FMSF was conducted by
Deatrick and Knafl in 1990. This original work has
been refined over the last 23 years to be one of the
most significant longitudinal studies of a family as-
sessment instrument. The assessment instrument
helps nurses understand the needs of families who
have children with specific chronic conditions, such
as brain tumors (Deatrick et al., 2006), children un-
dergoing palliative care at home (Bousso, Miski,
Mendes-Castilla, & Rossato, 2012), and adolescents
who have spina bifida (Wollenhaupt, Rodgers, &
Swain, 2011). In addition to investigating families
with children, Beeber and Zimmerman (2012) used
the FMSF to increase understanding of challenges
for families who have an older adult with dementia.
Understanding the family’s responses to a
chronic condition provides ways for family nurses
to offer effective interventions to meet both the
needs of the individual and family. In this framework,
242 Families Across the Health Continuum
3921_Ch09_237-276 05/06/14 11:05 AM Page 242
there are five family management styles: thriving,
accommodating, enduring, struggling, and floundering.
The management style a family adopts is based on
how the family members define the situation, man-
age the situation and perceive the consequences of
the situation. In the FMSF, the parents each define
what the child’s chronic condition means for them
individually and their family. Included in this defi-
nition is how the parents view the child. Does the
parent view the child as a child who has a health
issue that can be managed, or does the parent focus
on the condition before the child and see the man-
agement of the health condition as tragic and diffi-
cult to manage? Influencing the definition are the
parents’ personal beliefs about the cause, the seri-
ousness, the predictability, and the course of the
condition. Another component in defining the ill-
ness is how disparate or similar the two parents’ per-
ceptions are on how they view their child, the
condition, parenting philosophy, and overall ap-
proach to management. Table 9-1 briefly outlines
the five family management styles.
Families Living With Chronic Illness 243
Table 9-1 Family Management Style Framework
View of the Child
Thriving Accommodating Enduring Struggling Floundering
Parents view child from
the lens of normalcy.
They see the child as just
as capable as other
children. Their child has
a chronic health condition
that is incorporated into
everyday life of the child
and the family as a whole.
Parents view life as normal
and incorporate the
management of the health
condition into everyday
life of the child and family.
Parents mutually agree
in their viewpoints and
definition of the child and
their management
approach.
Management Behaviors
Thriving Accommodating Enduring Struggling Floundering
Parents are confident
in their management
abilities and incorporate
management regimen into
the life of the family. They
are proactive in their
problem-solving approach.
Parents fluctuate in
their view of the child
between that of
normalcy and tragic.
Sometimes see them
as capable and other
times focus on
vulnerabilities.
Parents vary on
how they view life
between normal or
focused on the
management of the
health condition.
Parents usually share
the same viewpoints,
definition, and man-
agement choices.
Parents are confident
in their abilities but
have the viewpoint
of the management
regimen as burden-
some. They are
usually proactive in
problem solving,
but sometimes are
reactive.
Parents usually see
their child from the
lens of normalcy and
being capable of
living everyday life.
Parents tend to view
life as normal and
caring for the child
with a chronic condi-
tion as part of life.
Parents usually share
the same viewpoints,
definition, and man-
agement choices.
Mothers are confident
in their abilities to
manage the chronic
condition. Fathers are
not as confident as
the mothers in their
abilities to manage
the illness. They are
usually proactive in
problem solving,
but sometimes are
reactive.
Parents are inconsis-
tent in how they
view the child rela-
tive to normalcy
capabilities and
vulnerabilities.
Parents are variable
in how they view
everyday life, but
primarily see it from
a negative lens and
the management
overtakes their every-
day life as a family.
Parents do not share
the same viewpoints
and definition and
do not agree on
management ap-
proaches, which
creates much conflict
between the parents.
Parental conflict is
the overriding theme.
Mothers see the man-
agement as burden-
some. Fathers express
more confidence in
their ability to manage
the chronic condition.
Both parents do not
anticipate problems
that are routine;
therefore they are
reactive to problems.
Parents have prima-
rily a negative view
of their child and
see the situation as
tragic. They see the
child as not capable
and as vulnerable.
Parents view the
situation as a
burden and have
a sense of hateful-
ness about having
to manage their
child’s chronic
health condition.
Parents differ signif-
icantly on how they
view the child, how
they define the
situation, and the
management plan.
Parents view the
management regi-
men as burden-
some. They feel
inadequate and
overwhelmed. They
are reactive to
problems and often
are overwhelmed
or put into crisis
mode when a
problem occurs.
(continued)
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244 Families Across the Health Continuum
Table 9-1 Family Management Style Framework—cont’d
Perceived Consequences
Thriving Accommodating Enduring Struggling Floundering
Parents view the child in
the foreground and see the
stress and hassles of the
chronic health condition
in the background.
Parents have a positive
outlook and create a
new sense of “normal”
for the family as a whole.
Parents fluctuate in
how they perceive
the outcome and
stress/strains of the
chronic condition on
the child and the
family.
Parents usually
place the child in
the foreground
and the stress
and strains of the
chronic condition
in the background.
In general, the par-
ents have a positive
outlook for the
family as a whole.
Mothers typically
have a negative view
of the situation and
future outlook for the
child. Fathers tend to
be more positive in
their view of the
future for the child.
Parents have a
negative outlook
and view of the
future. They worry
that their future as
parents will be less
happy and limited.
Managing the child’s condition is another piece
to establishing a family’s management style. To
manage illness, parents combine their philosophy
of parenting with their beliefs about their ability to
parent a child with a chronic condition. One man-
agement approach may be that of being confident
in their ability to parent and manage a chronic
health condition. A second management approach
may be when the parent views the child and situa-
tion as burdensome. A third approach is when par-
ents feel they are inadequate in their abilities to
parent a child with a chronic condition.
Another element of management concentrates
on how the parent balances the ability to manage
the chronic health condition with other aspects
of family life. Parental management behaviors
linked with chronic illness are often aligned with
their ability to establish consistent and effective
treatment routines. Parents may not be well pre-
pared to handle the caregiving responsibilities
shortly after receiving a chronic illness diagnosis;
they might require some coaching (Sullivan-
Bolyai, Knafl, Sadler, & Gilliss, 2004). Stable
routines that allow for balance or equilibrium in
daily life are essential for optimal disease man-
agement over time and through life course
changes. For example, if the chronic illness re-
quires dietary changes, family members must
learn ways to balance personal food preferences
and prior eating patterns with the medical needs
of the ill member. Although specific management
or routine activities may vary, a predictable and
consistent routine seems essential.
Finally, the ways parents focus attention on and
perceive consequences of a chronic illness is an
important consideration in determining the fam-
ily’s management style. Chronic illness can be
viewed as a central feature of the family, an organ-
izing focus, or a life aspect balanced with other
responsibilities.
The FMSF not only identifies cognitive and be-
havioral family aspects, but also points to factors that
may be predictive of family strengths or problems
(Knafl & Deatrick, 1990, 2003; Knafl, Deatrick, &
Havill, 2012). Nurses using this model are urged to
consider the unique needs of individuals within the
family, those of family members or member dyads,
and the family as a whole. Family nurses should use
this model as a guideline that outlines ways to think
about how a family is responding to having a child
with a chronic illness. Nurses can use this model to
help think of interventions that may help a family in
the management of the situation and adaptation to
living with a chronic condition. Nurses need to un-
derstand member dynamics and family processes as
they assess care needs, provide education, and offer
counseling.
Family Health Model
Connections between chronic illness and families
are tied to ideas suggested within the Family
Health Model (FHM) (Denham, 2003). This eco-
logical model provides a lens to consider the
multiple traits, interactive processes, and life ex-
periences that influence the health and illness of
3921_Ch09_237-276 05/06/14 11:05 AM Page 244
interacting and developing persons. Families and
individual members have infinite ways to define
themselves, as they interact and exchange informa-
tion with larger societal systems and institutions.
The family household is the hub of action where
members depart and return as individual members
are nurtured and socialized. The FHM identifies
member connections to each other and those be-
yond the household boundaries that have relevance
to chronic illness. The FHM uses three domains—
contextual, functional, structural—in which nurses
perform assessments, plan care, provide nursing ac-
tions, and evaluate outcomes. This model encour-
ages nurses to consider ecological factors relevant
to the family members and their household. Things
such as the neighborhood, community resources,
community demographics, political milieu, and
social environment are factors that also influence
families’ responses to chronic illness and disease
management, and affect outcomes.
Operational definitions suggest ways to describe
the complex relationships among the biophysical
and holistic aspects of a chronic illness and how
these aspects affect family, health, and family health.
In the FHM, health is defined as an adaptive state
experienced by family members as they seek to
optimize their well-being and wrestle with liabilities
found within self, family, households, and the vari-
ous environments where they interact throughout
the life course (Denham, 2003). This definition
guides nursing practice roles useful for family care
when a member has a chronic illness. Even when
one has a chronic illness, health can still be possible
and well-being can be maximized. Family health
suggests that member transactions occur through
system and subsystem interactions, relationships,
and processes that have the potential to maximize
processes of becoming, enhance well-being, and
capitalize on the household production of health.
Families strive to achieve a state where members are
content with themselves and one another. That is,
family health includes the complex interactions of
individuals, family subsystems, family, and the var-
ious contexts experienced over the life course. The
household becomes the pivotal point for coping
with health and family health needs.
Context
Family health is depicted with contextual, func-
tional, and structural dimensions (Fig. 9-1). The
Families Living With Chronic Illness 245
Social Construction
of
Family Health
Contextual Aspects
• Family members
• Member traits
• Household niche
• Community context
• Contextual systems
• Time
Structure Aspects
• Routine type
• Routine characteristics
• Routine meaning
• Routine purpose
• Routine participants
• Timing of routines
Functional Aspects
• Developing persons
• Member relationships
• Developing family
• Core processes
• Proximal processes
• Ecocultural domains FIGURE 9-1 Contextual, functional,
and structural aspects of family care.
3921_Ch09_237-276 05/06/14 11:05 AM Page 245
contextual domain includes all of the environments
where family members interact or have potential to
be acted on, but also includes the characteristics or
traits of the family (e.g., socioeconomic, educational
attainment, extended kin relationships). The con-
textual domain is affected by the internal household
environment (e.g., membership traits and qualities,
culture, traditions, values) and external household
environment (e.g., neighborhood, community,
safety, larger society, historical period, political con-
text). An ecological model helps nurses understand
that nested life aspects can challenge or strengthen
one’s abilities to discern causes and outcomes. Over
time, it is difficult to decipher the many powerful
influencers; things overlap, intersect, and potentiate
or negate important health factors.
The family household is a key family environment
or context. The household refers to the physical
structure(s), immediate neighborhood surround-
ings, material and nonmaterial goods, and tangible
and intangible family resources of the members
that live together. As people age, they often reflect
back on many households where they lived and the
various influences impressed upon self from those
settings. The family context pervades all life aspects
and affects personal interactions, values, attitudes,
access to medical resources, and availability of sup-
port systems, and has influence on individual and
family health routines. For example, a family living
in poverty or lacking adequate health care insur-
ance is unlikely to have the same access to medical
care as a more affluent family. A rural family with
a long tradition of cultural values about health or
illness might minimize physical symptoms and be
slower to seek medical care than an urban family
with great confidence in science and the abilities of
health care practitioners.
Function
The functional domain refers to the individual and
cooperative processes family members use as they in-
teract with and engage one another over the life
course. This domain includes individual factors (e.g.,
values, perceptions, personality, coping, spirituality,
motivation, roles), family process factors (e.g., cohe-
siveness, resilience, individuation, boundaries), and
member or family processes (e.g., communication,
coordination, caregiving, control). These dynamic
factors mediate the actions of individuals, family
subsystems, and families as a whole as they seek to
attain, sustain, maintain, and regain health. The core
family functions of caregiving, celebration, change,
communication, connectedness, and coordination
alter as health and illness are faced; these are areas
nurses can assess, plan nursing actions, and collabo-
rate with family members to improve chronic illness
outcomes (Denham, 2003). The experiences linked
with chronic illness can test and burden the func-
tional capacities of the family and its members. In
some families, individual and group strengths can be
rallied to address pressing concerns, whereas other
families might have member conflict that threatens
the capacities of effective disease management.
Structure
The contextual and functional domains are the situ-
ational and behavioral antecedents that family mem-
bers use to construct family habits or patterns linked
with health and illness outcomes. The third aspect of
the FHM is referred to as the structural domain; it is
composed of six categories of family health routines:
self-care, safety and precautions, mental health be-
haviors, family care, illness care, and member care-
taking. Each routine category is comprised of
complex multimember habitual actions that form in-
teractive patterns that describe the lived health and
illness experiences of family households (Denham,
2003). Family health routines are relatively stable but
still dynamic actions or habitual patterns that can be
recalled, described, and discussed from individual and
family perspectives. What might initially appear as
random or chaotic patterns to an outsider may rep-
resent to family members regularity, purpose, and
value of individual routines.
Although routines have unique qualities and
involve all household members, some aspects of
them change and evolve over time. This evolution
can be a voluntary and intentional act or it can be
a consequence of other things occurring in the
family’s life. Family members tend to maintain the
integrity of routines as long as they are viewed as
meaningful. New life situations can cause some
adaptations to occur, however. Health routines
tend toward steadfastness, but the diagnosis of a
chronic condition that demands medical manage-
ment and the availability of new or different sup-
port or resources (i.e., contextual factors) can
challenge prior valued routines. During a chronic
condition, if the family uses effective modes of
communication, has abilities to share roles, and is
comprised of resilient personalities, it might be
more capable of handling the changes than those
lacking these qualities. Family members might be
able to cooperate and deconstruct ineffective
246 Families Across the Health Continuum
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routines and reconstruct new ones better than a
disorganized family or one where member conflict
rules. Health and illness routines are ways family
members can support or thwart the management
of a chronic illness. Family-focused nurses who
partner with individuals and families can collabo-
rate with them to plan care, strategize ways to im-
plement changes, and evaluate outcomes. The
creation and stability of healthy family routines and
lifestyles can be strengthened through cooperative
efforts. Family health routines are dependent on
the human and material resources needed for the
individual and family to make needed changes.
Functional perspectives give insight into ways fam-
ilies optimize health potentials and use resources
to balance diverse and conflicting needs.
Well-being
Family-focused nurses strive to assist individuals
and families make the most of available resources
to achieve health and well-being. Well-being, in the
Family Health Care Model (Denham, 2003), is
defined as a health state with actualized opportuni-
ties, minimized liabilities, and maximized resources.
Well-being includes many dimensions, including
biophysical, psychological, emotional, social,
spiritual, and vocational. Well-being is achieved
through accomplishment of family goals such as risk
reduction, prevention, health maintenance, and
self-actualization. Nurses aim to provide holistic
care that enhances well-being and to partner with
families to empower them when chronic illness is
the concern. Nurses who provide family-focused
care aid individuals and families to achieve their
health goals. They also empower members to devise
plans and identify ways to implement strategies, and
evaluate whether goals are met. Nursing encounters
become a means to target the household production
of health, or holistically address related or poten-
tially related health attributes or threats.
In chronic illness, family-focused care assists mul-
tiple family members to adapt, accommodate, and
use household resources to achieve well-being for the
entire family. Based on the FHM, family-focused
nurses can use what are identified as core processes
to consider family aspects relevant to chronic disease
management and identify ways to empower individ-
uals and families to meet care goals (Table 9-2). The
FHM suggests a variety of ways to understand what
happens when a member has a chronic illness from
contextual, functional, and structural perspectives
(Denham, 2003). Table 9-3 identifies a number of
Families Living With Chronic Illness 247
Table 9-2 Core Family Processes and Chronic Illness
Core Processes Definition Areas of Concern
Caregiving
Cathexis
Celebration
Change
Concern generated from close intimate family
relationships and member affections that result
in watchful attention, thoughtfulness, and ac-
tions linked to members’ developmental, health,
and illness needs
Emotional bonds between individuals and family
that result in members’ emotional and psychic
energy investments into needs of the loved one
Tangible forms of shared meanings that occur
through family celebrations, family traditions,
and leisure time that might be used to com-
memorate special times, days, and events; these
times are often used to distinguish usual daily
routines from special ones; they often occur
across the life course and have special roles,
responsibilities, and expectations
A dynamic nonlinear process that demands an
altered form, direction, and/or outcome of an
expected identity, role, activity, or desired future
Health maintenance
Disease prevention
Risk reduction
Health promotion
Attachment
Commitment
Affiliation
Loss
Culture
Family fun
Traditions
Rituals
Control
Meet expressed needs
Meanings of change
Contextual influences
Illness care
Rehabilitation
Acute episodic needs
Chronic concerns
Grief and mourning
Normative processes
Complicated processes
Religion
Hobbies
Shared activities
Compare and contrast
Similarities/differences
Diversity
(continued)
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248 Families Across the Health Continuum
Table 9-2 Core Family Processes and Chronic Illness—cont’d
Core Processes Definition Areas of Concern
Communication
Connectedness
Coordination
The primary ways children are socialized and
family members interact over the life course
about health beliefs, values, attitudes, and behav-
iors, and incorporate or apply health information
and knowledge to illness and health concerns
The ways systems beyond the family household
are linked with multiple family members through
family, educational, cultural, spiritual, political, so-
cial, professional, legal, economic, or commercial
interests
Cooperative sharing of resources, skills, abilities,
and information within the family household,
among members of extended kin networks, and
larger contextual environments to optimize indi-
vidual’s health potentials, enhance the house-
hold production of health, maintain family
integrity or wellness, and achieve family goals
Language
Symbolic interactions
Information access
Coaching
Cheerleading
Partner relationships
Kin networks
Household labor
Cooperation
Member roles
Family tasks
Problem solving
Decision making
Valuing
Coping
Resilience
Knowledge and skills
Emotional needs
Affective care
Spiritual needs
Family rules
Boundaries
Tolerance for ambiguity
Marginalization
Respect
Reconciliation
Forgiveness
Cohesiveness
System integrity
Stress management
Source: Modified from Denham, S. A. (2003). Family health: A framework for nursing. Philadelphia, PA: F. A. Davis,
with permission.
Table 9-3 Assessment Using the Family Health Model
Categories to Assess Specific Areas Within Each Category
Contextual
Functional
Structural
• Developmental stage
• Family traits
• Availability of health insurance
• Access to care
• Demographics (age, education, sex, employment)
• Social support
• Culture and ethnicity
• Political, historical, and environmental factors
• Stressors
• Coping skills
• Family roles
• Member responsibilities
• Communication patterns
• Illness characteristics
• Family organization or chaos
• Routines established
• Ability and willingness to alter routines
3921_Ch09_237-276 05/06/14 11:05 AM Page 248
areas a family nurse might assess using this concep-
tual model.
PREVENTION OF CHRONIC
ILLNESS THROUGH HEALTH
PROMOTION
Many chronic conditions are preventable. Others,
though not preventable, may be able to be delayed,
thus ensuring more quality life years. Prevention is
an important factor to consider when understanding
chronic illnesses. For example, the CDC (2008b,
p. 2) has identified several ways preventive financial
investments can make important differences:
■ For each dollar spent on water fluoridation,
$38 is saved in dental restorative treatment
costs.
■ For each dollar spent on the Safer Choice
Program (a school-based HIV, other sexually
transmitted diseases, and pregnancy preven-
tion program), about $2.65 is saved on
medical and social costs.
■ Every dollar spent on preconception care
programs for women with diabetes can re-
duce health costs by up to $5.19, and prevent
costly complications for mothers and babies.
■ Implementing the Arthritis Self-Help Course
among 10,000 individuals with arthritis will
yield a net savings of more than $2.5 million
while simultaneously reducing pain by 18%
among participants.
In looking at gaps of current data collection sys-
tems, the Institute of Medicine (2011) suggests that
individual and collective data are needed that helps
understand the continuum of prevention, disease
progression, treatment options, and their out-
comes. A troubling aspect of all surveillance efforts
is that we have little to no information about family
roles, inputs, or outcomes in the prevention or
management of chronic illness.
Nonetheless, chronic illness is often linked to
behavioral and environmental risk factors that
could be effectively addressed through prevention
programs. For example, the increasing rates of obe-
sity, leading to several chronic complications, could
be prevented with changes in dietary and exercise
behaviors and changes in our environment that en-
courage exercise. An optimistic scenario including
weight reduction, healthy eating, a more active
lifestyle, continued decrease in tobacco use, im-
proved early detection, fewer invasive treatments,
and quicker adoption of proved therapies could cut
chronic illness treatment costs by $217 billion per
year by 2023 (DeVol & Bedroussian, 2007). These
changes could reduce the climbing chronic illness
rates and reduce related complications through
preventive care.
The Institute of Medicine (2012) suggests taking
a “health in all policies” approach to federal regu-
lations, legislation, and policies that improve op-
portunity for health and physical function for those
living with chronic illness. This report also recom-
mends that community-based services available for
persons with chronic disease align with health care
services and insurance reform legislation. If such
an approach were to be taken, legislators and those
involved in policy writing would be more conscious
about health risks and the ultimate costs resulting
from legislative decisions. To curb the chronic ill-
ness epidemic, it is critical to initiate innovative ap-
proaches in the ways these diseases are prevented
and managed now.
HELPING FAMILIES LIVE
WITH CHRONIC ILLNESS
Family-focused nurses understand that when indi-
viduals have a chronic illness, whether they are
young or old, family is always involved in the care.
Family members influence decision making, engage
in family planning, and play roles that positively and
negatively influence disease management.
Some people manage their chronic illness with-
out much difficulty or help from others, whereas
others require a great amount of assistance and
significant family involvement. Many need little
medical care, but others require extensive medical
services that may include care from special health
practitioners, regular treatments or testing, mul-
tiple medicines, or intense therapies. Life can be
completely disrupted when confronting long-
term or chronic illnesses that affect physical abil-
ities, appearance, and independence. Diminished
endurance capacities; continual discomfort in
physical, emotional, and social realms; and finan-
cial problems are just a few of the challenges fam-
ilies face. New medical procedures, diagnostic
tests, screening, and pharmaceuticals have im-
proved health and the ability to live with chronic
Families Living With Chronic Illness 249
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conditions and extended life span so families are
living longer with chronic illness.
The Institute of Medicine (IOM) (2012) con-
sidered what it takes to live well with chronic ill-
ness and determined that it requires more than
medical care and pharmaceutical treatments. The
IOM suggests that there are a variety of health
determinants that affect the life course (i.e., biol-
ogy, genes, behavior, coping responses, physical
environment, sociocultural context, peers, and
family). Some of these aspects are linked with
learned behaviors, family households, and the
communities where families live. One might clas-
sify persons as healthy, at risk, chronically ill,
functionally limited, disabled, or nearing the end
of life. These health outcomes are influenced by
a number of factors; some are intrinsic or con-
trolled by the individual, and some are beyond the
individual and live in the larger society (e.g.,
environmental risks, public policy, population
surveillance, media, public health, community or-
ganizations, health care, social values). This sec-
tion focuses on how to work with families to
support the person with the illness to participate
in his or her own self-management, and ways to
help families adapt to living with a chronic illness
and working with the family care provider.
Helping to Support Self-Management
Self-management is a crucial aspect to quality liv-
ing and successful management of a chronic ill-
ness. Self-management includes self-efficacy,
self-monitoring of illness, and symptom manage-
ment that is conducted by self or as the person
directs others to do for him or her (Richard &
Shea, 2011). Self-management is both a process
and an outcome of family nursing care. The “Self-
Management Support for Canadians With Chronic
Health Conditions” report (Health Council of
Canada, 2012) outlines the following four recom-
mendations to help the Canadian health care sys-
tem support people living with chronic illness in a
more systematic way (p. 7). These recommenda-
tions should be applied to those living with chronic
illness regardless of country:
■ Create an integrated, system-wide approach
to self-management support.
■ Enable primary health care providers to
deliver self-management support as a routine
part of care.
■ Broaden and deepen efforts to reach more
Canadians who need self-management
supports.
■ Engage patients and informal caregivers as
a key part of any systematic approach.
Family nurses work with the individual and fam-
ily to support self-management of the illness. For
example, adolescents/young adults who engage in
self-management at the time they transition from
pediatrics to adult medical care are known to have
improved health outcomes (American Academy of
Pediatrics, 2011; van Staa, van der Stege, Jedeloo,
Moll, & Hilberink, 2011).
Diabetes is a clear illustration. Diabetes self-
management, much like self-management for any
chronic illness, entails adhering to a prescribed
medical regimen and making lifestyle behavior
changes. Most of these actions largely occur out-
side nurses’ and other health professionals’ obser-
vation. Self-management calls for integration of
prescribed treatments into the daily experience.
Self-management requires highly motivated indi-
viduals to follow medically prescribed treatments
and protocols that may not be understood fully.
This means that the individuals must have some
confidence that their doctors and other practition-
ers know what they are doing and trust that fol-
lowing these directions will improve one’s quality
of life.
The last several decades have produced a large
body of research findings that suggest that self-
efficacy is an important factor linked with a will-
ingness to participate in specific behavior (Richard
& Shea, 2011). Persons with higher self-efficacy are
more likely to engage in more challenging tasks, set
higher goals, and achieve them (Bandura, 1977).
Individuals with the disease and their family mem-
bers will have different levels of self-efficacy and
may differ in their level of readiness for change.
Nurses who understand self-efficacy and readiness
to change can use these concepts as they collabo-
rate with families to set goals and plan strategies
for meeting them. Nurses assess families on their
perceptions and abilities to make the changes and
then assist them as they agree on what changes they
can make together. Nurses can explore family
members’ desires and confidence in their ability to
alter lifestyle habits that might support their family
member with a chronic illness to adhere to lifestyle
changes, such as diet. A nurse-led family confer-
ence might be a way for the nurse to share more
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information about why changes are needed, bene-
fits that might be realized, and risks if no changes
are made. Some agreement might arise on trying a
few things differently each week and moving to-
ward the goals by using small steps each week.
Nurses should not be simply telling the family what
needs to be done, but asking them what they need,
identifying their concerns, and helping them iden-
tify what they believe will be a plan they are willing
to achieve together.
Too often, persons with chronic conditions see
numerous clinicians who order treatments without
consulting how they might affect the whole family.
Individuals and families benefit from coordinated
care; this means providing treatments and medical
visits in ways that integrate services and relevant
communication among those providing care. Goals
of coordinated care include improving health out-
comes, identifying risks or problems early, avoiding
crises, and ensuring cost-effectiveness of service
delivery. Poorly coordinated care has risks for pre-
ventable health complications, conflicts between pro-
fessionals, increased stress for the individuals and
their families, unnecessary hospitalizations, added ex-
penses, and even death. Persons who experience even
a single chronic condition can receive conflicting
information, numerous diagnoses, or multiple med-
ications by different professionals. Nurses are in po-
sitions where they can facilitate care management
and help individuals and family members sort out the
conflicting information or directions in developing a
family-focused management plan. By helping the
family to develop a management plan, the nurse em-
powers the family and the person with the chronic
illness to participate in and control self-care, with the
goal of improving health outcomes for all members
of the family.
Family Adaptation
Living with chronic illness is described by Arestedt,
Persson, and Benzein (2013) as an ongoing process
of adaptation, co-creating ways for the family
members, both individually and as a family, to
achieve a sense of well-being. By using this in-
depth phenomenological hermeneutic analysis,
family nurses can work with families to help them
adjust to everyday living by developing a new
rhythm of adaptation.
■ Co-creating a context for living with illness:
When families are confronted with the reality
of living with a family member having a
chronic illness, they spend time learning how
to develop different ways of accomplishing
the tasks of the family and meet the needs
of the family members. They accomplish this
through discussion of the situation. After this
initial adjustment and the establishment of
how to maintain daily functioning, families
report that the illness and situation is not
always on their minds.
■ Communicating the illness within and out-
side the family: Families learn to balance
discussion about the illness, the situation,
and the future with chronic illness with other
life events for the individual family members
and the family as a whole.
■ Co-creating alternative ways for everyday
life: Families learn to operate at a slower
pace than before chronic illness. Families
note that they are more focused on the
present as there is an ever-present awareness
of an uncertain future.
■ Altering relationships: The members of the
family develop or adapt their relationships
to include chronic illness as they have to get
to know each other in a different way. In
some situations, family members are interact-
ing more often than before the onset of the
chronic illness. In other situations, families
report being stronger and pulling together
more when the illness has exacerbations.
■ Changing roles and tasks: All roles in the
family require adjustment when living in the
midst of chronic illness. The family struggles
to reestablish a balance in getting the needs
of the family accomplished.
With many chronic illnesses, the family is con-
tinually shifting between illness being the primary
focus of the family and wellness being the primary
view of the family. For example, when there is an
exacerbation of the illness that requires the family
member to be hospitalized, the family is reminded
the illness is present and needs attention. At other
times, the family is focused on the wellness of
everyone by, for instance, having family dinner to-
gether once a week. Co-creation of ways the family
adapts and flows with this movement allows for
some overlapping of these two family situations
(Paterson, 2002). Nurses working with families liv-
ing with chronic illness who understand this
process of evolving family adaptation empower
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families to move from a viewpoint of “victim” of
circumstances to a viewpoint of “creator” of cir-
cumstances (Arestedt et al., 2013; Paterson, 2002).
One person’s chronic condition has great po-
tential to influence the lives of many others. Those
living with a family member with a chronic disabil-
ity can become fatigued by the constant vigilance
required to perform normal everyday activities of
daily living and the stress of uncertainty (Hummel,
2013a). This fatigue is influenced by the volume
of help required, the emotional strain that accom-
panies the daily hassles, and the relationship strain
of constantly giving to another. One aspect of fam-
ily nursing that is crucial to helping these families
is assisting the family members to adjust to new
roles, such as caregiver and care receiver. Nurses
can help families explore who does what role in the
family and how to use resources to help the family
function well by using outside resources to fill
some of the family roles. See Chapter 4 for more
detail about how to work with families about role
negotiation.
Family Caregiving
Family caregiver is a crucial role in providing sup-
port for those living with chronic illness. Several
chapters in this book touch on family caregivers
caring for family members with chronic illness. For
example, Chapter 16 addresses family caregiving
for families living with mental health concerns.
Chapter 15 focuses on working with families who
have an aging family member, and Chapter 10 of-
fers suggestions about working with families when
a member is experiencing palliative care or end-
of-life care. Glasdam, Timm, and Vittrup (2012)
reviewed 32 studies of professional interventions
on family caregivers. The researchers found that
few studies target the caregivers of family members
with cancer, cardiovascular disease, or stroke. They
conclude that health care providers lack knowledge
about the effects of interventions on caregivers.
There is a need for clear descriptions of the inten-
sified interventions used with caregivers and the
outcomes achieved in order to identify the benefits
of nursing actions for caregivers. It is clear, how-
ever, that soon after the diagnosis of a chronic ill-
ness of a family member, caregivers must become
proficient in many areas, including managing the
illness, coordinating resources, maintaining the
family unit, and caring for self. Nurses assisting
families can incorporate the following educational
and counseling needs into a treatment plan, making
clear who is responsible for what in the family:
■ Monitoring conditions and behaviors
■ Interpreting normal and expected behaviors
from different and serious ones
■ Providing hands-on care
■ Making decisions
■ Developing care routines
■ Problem solving
■ Teaching self-care management
This chapter will focus on two populations in
terms of caregiving: one is young children provid-
ing care to the adult family member living with a
chronic illness and the second is families who have
a child with a chronic illness.
Child Caregiving for an Adult
One population that is growing around the world is
that of young children providing care for a chroni-
cally ill adult. In the United States, there are approx-
imately 1.3 to 1.4 million child caregivers who are
between the ages of 8 and 18 (Hunt, Levine, &
Naiditch). The following list provides an estimated
number of children providing care for adult family
members in countries or commonwealths of the
United Kingdom (Caregivers Trust, 2012):
■ England: Nearly 5 million people are care-
givers, and of these, 145,000 are children.
■ Scotland: There are 657,000 caregivers in
Scotland, and of these, 16,701 are children.
■ Wales: There are 340,745 people who are
caregivers, and of these, 11,000 are children.
■ Northern Ireland: There are 185,066 people
who are caregivers, and of these, 2,300 are
children.
In Australia, it is estimated that there are 300,000
young caregivers, 150,000 of them under the age
of 18 years (Australian Bureau of Statistics, 2009).
A 2010 Canadian high school study of 483 ethni-
cally diverse students in grades 8 through 12 found
that 12% of youth between the ages of 12 and 17,
with a mean age of 14 years, self-identify as “Young
Carers” (Marshall & Stainton, 2010). In response
to a rising number of young caregivers, Canada
created an action task force to investigate the invis-
ible population of the young caregiver population
and its needs (Bednar et al., 2013). In a similar
study in the United States, Bridgeland, DiIulio, and
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Morison (2006) found that a third of high school
dropouts (32%) said they had to get a job and make
money; 26% said they dropped out because they
became a parent; and 22% said they had to care for
a family member. Many of these young people re-
ported doing reasonably well in school and had a
strong belief that they could have graduated if they
had stayed in school. Childhood caregiver statistics
in the United States identified by Hunt et al. (2005)
are listed below:
■ Three in ten child caregivers are ages 8 to 11
(31%), and 38% are ages 12 to 15. The
remaining 31% are ages 16 to 18.
■ Child caregivers are almost evenly balanced
by gender (male 49%, female 51%).
■ Caregivers tend to live in households with
lower incomes than non-caregivers, and they
are less likely than non-caregivers to have
two-parent households (76% vs. 85%).
There are both negatives and positives to being a
young family caregiver. The positive effects are that
they report feeling appreciated for their help and that
they like helping their family member (Hunt et al.,
2005). Negative outcomes from assuming the family
caregiver role at a young age are reported in the lit-
erature, however. Young caregivers between 8 and
11 years old are more likely than non-caregivers to
feel at least some of the time that no one loves them
(Hunt et al., 2005). A 2012 study found significant
effects on caregiving teens’ mental health, specifi-
cally, significantly higher risk for anxiety and depres-
sion (Cohen, Greene, Toyinbo, & Siskowski, 2012).
Nurses should be aware that there are several young
caregiver support groups that are offered online and
there are camps offered for these children where they
can have some carefree time away from family re-
sponsibility. Family nurses should inquire about the
involvement of children and teens in caring for fam-
ily members with chronic illness.
The population of young caregivers remains an
invisible population and the exact numbers are un-
known. Some reasons this caregiver population is
growing include the following:
■ Decreasing family size
■ Geographical dispersion of families
■ High divorce rates
■ Increasing number of single parents
■ Multiple marriages and reconstituted families
■ In African countries, it may be related to
number of adult deaths due to AIDS
These students and young caregivers live a
stressful life that has many more responsibilities
when compared to age peers. In addition, the young
caregivers are found to have significantly more anx-
iety and depression and less satisfaction when com-
pared to non-caring age-related peers (Cohen et al.,
2012). Caregiving has a negative influence on the
emotional well-being of youth with dual student-
caregiver roles (Cohen et al., 2012).
The UK countries have several major national
laws that provide for a wide range of services and
programs that include financial allocations to assess
vulnerable children, provide community- and home-
based services for care recipients, families, and
youths, and have several support programs and re-
sources for youth caregivers. The United States has
no national policies or programs to support this vul-
nerable population. The American Association of
Caregiving Youth (2013) was established by Connie
Siskowski, a nurse. This is the only program in the
United States that addresses any concerns about this
vulnerable population. She designed an after-school
program to help these young caregivers meet others
living in similar situations, learn how to provide care
for their family member safely, and learn how to
seek help or resources (American Association of
Caregiving Youth, 2013). This nurse also designed
a week-long onsite summer camp for these young
caregivers to attend so they could experience a nor-
mal childhood event and get away from the stress of
everyday caregiving.
As this population of vulnerable caregivers con-
tinues to grow, one role of the family nurse is to be
alert and recognize when a young child is providing
care for an adult in the family. When this situation is
present, the nurse should work to find supports for
this caregiver and remember that the caregiver is also
a child or adolescent who has normal developmental
needs in addition to this caregiving family role.
Families Caring for Children Living
With a Chronic Illness
According to the National Survey of Children with
Special Health Care Needs 2009–2010 (Data Re-
source Center for Child and Adolescent Health,
2012), 11.2 million children from 0 to 17 years of
age have special health care needs, which trans-
lates to one in five American households. Chil-
dren with special health care needs (SHCN) have
a wide range of conditions and risk factors that
underlie many shared health conditions. The top
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six health issues for children with SHCN, in order
of prevalence, are as follows: 48.6% have allergies,
35.3% have asthma, 30.2% have attention-deficit
disorder/attention-deficit hyperactivity disorder,
17.6% have developmental delays, 17.1% have
anxiety, and 13.3% have behavioral problems
(Data Resource Center for Child and Adolescent
Health, 2012). Most of these top issues are mental
health in nature, which differs from the top
chronic illnesses encumbering adults noted earlier
in the chapter.
Children with SHCN are like typical children
in many ways: they are actively growing and devel-
oping, enjoy playing and being with peers, and
thrive in cohesive family environments. Children
with chronic conditions, however, have limitations
that affect daily lives and contribute to challenges
unique from peers without chronic conditions.
Over half of the children with special health care
needs report that they experience four or more
functional disabilities that are related to everyday
living, such as respiratory problems, eating prob-
lems, vision issues, difficulty using their hands, and
communication issues.
Health care costs that exceed $250 out-of-pocket
are often perceived by the family as burdensome,
and even lower amounts affect families with lower
socioeconomic status (Lindley & Mark, 2010).
Twenty percent of families of children with SHCN
report that they spend 2 to 7 hours a week providing
health care for the child at home and 14% spend
more than 11 hours a week. Caring for the child at
home is associated with a significant increase in the
odds of having a family member reducing or quit-
ting employment outside the home because of the
child’s health care needs (Looman et al., 2009).
Families with children with SHCN have many
needs, caregiving and otherwise. Studies have
shown that mothers of chronically ill children often
have greater levels of distress than fathers, a concern
thought to be related to the greater care demands
placed on the mothers (Spilkin & Ballantyne, 2007).
It is also not unusual for parents to differ in their
perceptions about the impact of the chronically ill
child on the family as a whole and on the marital
relationship. Although mothers may find that care-
giving demands influence their role performance,
fathers may perceive the impact most in their
expression of feelings and emotions (Rodrigues &
Patterson, 2007). A study of 173 parent dyads of
children with chronic conditions found that moth-
ers’ marital satisfaction was influenced more than
fathers’ by perceptions about the effects of their
child’s condition on the family (Berge, Patterson, &
Rueter, 2006). Parents’ perceptions of the negative
effects of the child’s chronic condition were meas-
ured in terms of family social strain, role strain, and
emotional strain. If parents differed in perceptions
about the effects of the illness on the family or mar-
ital relationship, an increase in stress and frustration
resulted. Nurses can assist couples to identify dif-
ferences in perception between parents, and facili-
tate discussions about the effects on roles and the
benefits of sharing caregiving tasks (Berge et al.,
2006; Spilkin & Ballantyne, 2007).
Family-focused care involves active participation
between families, nurses, and other health care pro-
fessionals. Family-focused care supports partnering
or collaborative relationships that value and recog-
nize the importance of family traditions, family
beliefs, and family management styles. When con-
sidering the general population of children with
SHCN, approximately 35% of them received care
that lacked one or more of the essential compo-
nents of family-centered care (USDHHS, Health
Resources and Services Administration, Maternal
and Child Health Bureau, 2008), which are
outlined in Table 9-4.
In general, families raising children with chronic
illnesses face the joys and challenges that most typical
families face, and are as unique and varied as fam-
ilies of typically developing children (Drummond,
Looman, & Phillips, 2012). These families want their
children to be happy, have a high quality of life,
grow, and develop into caring adults who can live in-
dependently and contribute to society. These families
254 Families Across the Health Continuum
3921_Ch09_237-276 05/06/14 11:05 AM Page 254
Families Living With Chronic Illness 255
Table 9-4 Percentage of Children With Chronic Conditions Without Family-Centered Care
Family-Centered Care Component Percentage
Health care provider does not usually spend enough time with the child
Health care provider does not usually provide enough information for the family
Health care provider does not usually make parent feel like a partner in the child’s care
Health care provider is usually insensitive to the family’s values and customs
Health care provider does not usually listen carefully to family’s concern
Child does not have an interpreter when needed*
21.3
16.9
12.4
11.1
11.2
43.7
*This applies only to children who needed interpreter services (N = 36,018).
face additional stressors, and many researchers ac-
knowledge that the children and parents in these
families who care for their children at home are at
increased risk for stress-related health conditions
and psychosocial problems (Barlow & Ellard, 2006;
Berge et al., 2006; McClellan & Cohen, 2007;
Meltzer & Mindell, 2006; Mussatto, 2006). Box 9-1
provides a list of stressors likely to be experienced
by families caring for a chronically ill child. De-
spite the risks for problems, however, most chil-
dren with chronic conditions and their families,
including siblings, demonstrate incredible re-
silience and capacity for finding positives amidst
the challenges.
One approach to helping these families is to help
them understand the concept of normalization.
Normalization is a lens through which families of
children with chronic conditions focus on normal
aspects of their lives and deemphasize those parts
of life made more difficult by chronic conditions
(Bowden & Greenberg, 2010; Protudjer, Kozyrskyi,
Becker, & Marchessault, 2009; Rehm & Bradley,
2005). The following five attributes of normaliza-
tion for families of children with chronic condi-
tions offer foundational knowledge for nurses
working with such families (Deatrick, Knafl, &
Murphy-Moore, 1999):
■ Acknowledge the chronic condition and its
potential to threaten their lifestyle.
■ View all the management of the chronic illness
as just normal daily activities in the family.
■ Engage in parenting behaviors and routines
that are consistent with a normalcy lens.
■ Develop treatment regimens that are consis-
tent with normalcy.
■ Interact with others based on a view of the
child and family as normal.
Although normalization is a useful conceptual and
coping strategy for many families of children with
chronic conditions, in families whose children have
both complex physical and developmental disabili-
ties, normalization as a goal may be neither possible
nor helpful (Rehm & Bradley, 2005). When devel-
opmental delays compound the effects of a child’s
physical chronic conditions, a family’s ability to or-
ganize and manage its daily life is affected signifi-
cantly. In this case, parents often recognize normal
and positive life aspects, acknowledge the profound
challenges faced by their family, and accept a “new
normal” (Rehm & Bradley, 2005). This capacity
BOX 9-1
Potential Stressors When Raising a Child
With Chronic Health Conditions
■ Care regimen in meeting daily caregiving demands
■ Grief, loss of anticipated child events or activities
■ Financial and employment strains
■ Uncertainty about future
■ Access to specialty services
■ Reallocation of family assets (e.g., emotional, time,
financial)
■ Recurrent crises and crisis management
■ Foregone leisure time and social interactions
■ Social isolation because of stigmatizing policies and
practices
■ Challenges in transporting disabled children (e.g., when
architectural and other barriers restrict their inclusion)
■ Physiological stress of caregiving
3921_Ch09_237-276 05/06/14 11:06 AM Page 255
to normalize adversity and to define challenging
experiences as manageable and surmountable fosters
family resilience.
Families with members with chronic conditions,
especially those whose conditions are complicated
and require care from multiple specialists, often
spend a great deal of time interfacing with multiple
specialists and systems. For example, a family who
has a child with Down syndrome may require regular
visits for cardiac, ophthalmological, developmental,
and immunological evaluations, physical and occu-
pational therapy, and orthopedic assessments. In ad-
dition, parents typically spend a significant amount
of time and energy advocating for their child within
the school system, attending individualized educa-
tional program (IEP) meetings, meeting with aca-
demic support professionals, and coping with worries
about what is occurring when the child is out of sight
(National Association for Down Syndrome, 2012).
In addition, children with chronic conditions
still need well-child care similar to those without
such an illness. Further, these children are suscep-
tible to other infectious diseases or risks for in-
juries. It is important for children with chronic
conditions to receive regular health maintenance
visits with a primary care provider for anticipatory
guidance, routine illness, and injury prevention dis-
cussions. Parents of children with chronic condi-
tions expect to discuss illness concerns during the
well-child care visit. Some providers may expect
that care for chronic disease management will de-
crease opportunities for wellness discussion, but a
study of primary care provision for children with
SHCN demonstrated the opposite (Van Cleave,
Heisler, Devries, Joiner, & Davis, 2007). For par-
ents of children with SHCN and other parents, as
more illness topics were discussed, more preven-
tion topics were also discussed.
Researchers who have interviewed parents of
children with chronic conditions report some con-
sistent expectations that parents have for their en-
counters with professionals. Especially important is
parents’ need for information and mutual trust
(Nuutila & Salantera, 2006). Parents want informa-
tion to be communicated clearly, honestly, respect-
fully, and with empathy. To be able to give advice
and guidance applicable to the lives of a family,
health professionals need to know about the family’s
everyday living and life conditions, and must recog-
nize parents’ abilities and skills in caring for their
child (Nuutila & Salantera, 2006). Whether the
chronically ill person is a child or an adult, family
members require useful information that can be ap-
plied directly to real family needs. A trusting envi-
ronment must exist, with easy information exchange,
communication directed toward meeting individual
and family needs, and respect.
Families want information that will help them
provide adequate care for their member with
chronic illness and that will help them to anticipate
future needs. A decade ago, Ray (2003) noted that
excellent informational resources are available, but
are not used by families because professionals as-
sume that someone else has provided the family with
the information. Parents’ and others’ needs for in-
formation and support change over time as they
move through phases of the illness and the family
life cycle (Nuutila & Salantera, 2006). At the time of
diagnosis, parents want clear and consistent infor-
mation, and possibly a more directive approach from
the provider. For example, when a child with Down
syndrome is born, the parents may want to know the
immediate implications for the child’s health and
how that will affect their ability to care for the child
at home. As the child grows older and the family
gains experience in the care of the child, parents may
want a less directive approach from the provider and
more of a mutual exchange of information in a col-
laborative partnership (Nuutila & Salantera, 2006).
The nurse who encounters this family at a 3-year
well-child examination, for example, should ac-
knowledge the parents’ intimate understanding of
the child, her reactions to the environment, and her
unique needs during the clinical encounter. At this
point, the most helpful advice from the nurse is
likely anticipatory guidance and planning for entry
into the school system. Nurses must recognize that
individual and family needs will greatly differ for this
child as she becomes 16, 28, or 46 years of age.
Adolescents With Chronic Illness
Transition to Adult Services
Transition of care issues have been discussed in the
health care industry for decades, but little attention
has been allotted to studying and resolving transi-
tion problems. Transitions occur in health care in
a variety of ways: when a patient moves from one
health care provider to a different provider, when
a person is sent home from the hospital, when a
person who lives in a nursing home needs to be
hospitalized, or when a person must switch from
private pay to being on Medicaid. Basically a tran-
sition is any time there is a major change in the
256 Families Across the Health Continuum
3921_Ch09_237-276 05/06/14 11:06 AM Page 256
health care management. Transition of care issues
for adolescents, who are required to switch from
pediatric health care providers to the adult providers
of care, is a global health care problem (Kralik,
Visentin, & van Loon, 2011; Lugasi, Achille, &
Stevenson, 2011; Sonneveld, Strating, van Staa, &
Neiboer, 2013; Steinbeck, Brodie, & Towns, 2007,
2008; Wong et al., 2010). Family nurses are in a
prime position to address transition issues because
they work closely with families and children who
have chronic illness (Jalkut & Allen, 2009). As sur-
vival rates have improved with many children who
live with a chronic illness, this aspect of family
nursing requires even more focus. The transition
is not just about the medical care from a pediatric
physician to an adult specialist. The transition also
needs to include psychosocial, educational, and vo-
cational needs of the young adult. It also needs
to consider the parents who have, up until that
point, orchestrated the management of the illness,
communicated with the health care team, made ap-
pointments, and interfaced with school. The tran-
sition period causes anxiety for the whole family
involving leaving long-term health care provider
relationships, developmental psychosocial stressors
of adolescences, uncertainty about health insur-
ance coverage and issues of the Health Insurance
Portability and Accountability Act (HIPAA) relative
to parental knowledge, and involvement in the care
process and communication (Peter, Fork, Ginsburg,
& Schwarz, 2009).
What compounds the difficulty of this transi-
tion period for the family and the individual mem-
bers is the fact that the adult health providers who
are assuming care of the young adults with
chronic illness often lack understanding of normal
adolescent growth and development (Bowen,
Henske, & Potter, 2010). This lack of understand-
ing on the part of adult health care providers was
recognized as a problem by the American Acad-
emy of Pediatrics (2011).
Osterkamp, Costanzo, Ehrhardt, and Gormley
(2013) developed an online educational program
for nurses about the transition of care for adoles-
cent patients with chronic illness. The modules in
the program are HIPAA, family-centered care and
its core concepts relative to transition of care
of the adolescent patient, and healthy versus
chronically ill adolescent development (including
information about decrease in compliance with
medical regimens and feelings of isolation by
being different than other teens). Of the 1,898
nurses who completed the education modules, the
post-test assessment score averages were 95%.
Box 9-2 lists the Principles of Successful Transition
to Adult-Oriented Health Services that have been
Families Living With Chronic Illness 257
BOX 9-2
Principles of Successful Transition to Adult-Oriented Health Services
1. Health care services for adolescents and young people need to be developmentally appropriate and inclusive of the
young person’s family where appropriate.
2. Young people with chronic illnesses and conditions share the same health issues as their healthier peers. Health
services therefore need to be holistic and address a range of concerns, such as growth and development, mental
health, sexuality, nutrition, exercise, and health-risking behaviors, such as drug and alcohol use.
3. Health care services require flexibility to be able to deal with young people with a range of ages, conditions, and social
circumstances. The actual process of transition needs to be tailored to each individual adolescent or young person.
4. Transition is generally optimized when there is a specific health care provider who takes responsibility for helping the
adolescent or young person and his or her family through the process.
5. Active case management and follow-up helps optimize a smooth transfer to adult health services, as well as promote
retention within adult services.
6. Engagement with a general practitioner can address holistic health care needs and help reduce the risk of failure of
transfer to adult services.
7. Close communication between pediatric and adult services will help bridge cultural and structural difference of the
two health systems, resulting in smoother transition of young people to adult services.
8. An ultimate goal of transition to adult health care services is to facilitate the development of successful self-management
in young people with chronic conditions.
Source: Rosen, D., Blum, R., Britto, M., Sawyer, S., & Siegel, D. (2003). Transition to adult health care for adolescents
and young adults with chronic conditions. Position paper of the Society for Adolescent Medicine. Journal of
Adolescent Health, 33, 309–311.
3921_Ch09_237-276 05/06/14 11:06 AM Page 257
endorsed by the Society for Adolescent Medicine
in 2003.
Nurses who work with families and their teenager
with chronic illness should establish a process of
“getting ready” for the transfer long before—at
least a year or so in advance—the situation occurs
(van Staa et al., 2011) and work with the family to
design a well-thought-out purposeful plan of tran-
sition. One difficult part of this care process is
working with the family and the health care team
to determine when is the best time for the transi-
tion to occur. To base this transition decision solely
on chronological age is not sufficient (van Staa
et al., 2011). Typically, the transition occurs some-
time between years 18 and 21 (American Academy
of Pediatrics, 2011). The abilities of the young
adult to demonstrate responsibility and to partici-
pate as much as possible in self-care management
(self-efficacy) are better predictors than age of
readiness to transfer (American Academy of Pedi-
atrics, 2011; van Staa et al., 2011). Other factors
nurses need to consider and address beside self-
efficacy and age in this transition plan are the ado-
lescent’s attitude toward transition and the com-
plexity of the illness and treatment plan. The
transfer plan should also entail:
■ Introducing the concept of transition early in
the care relationship with the family. Stress
that the transfer is a normative process that
reflects achievement of an additional devel-
opmental task (Lugasi et al., 2011). Assure
the family that transition is not a form of
abandonment.
■ Holding family meetings to discuss expecta-
tions regarding the move to adult care. Explore
what they think will be the same or different.
Discuss the timing of the transfer. Use these
meetings to uncover concerns and needs of the
family and each family member about the tran-
sition process (Lugasi et al., 2011).
■ Assessing the adolescent’s ability to provide
self-care (Lugasi et al., 2011).
■ Designing educational programs to meet the
needs of the adolescent/young adult about
the illness, how to self-monitor, how to
self-manage illness and situations, and how
to ask for help when needed. This should
include helping the young adult to learn how
to develop communication skills.
■ Holding discussions about the adult health
care environment, insurance coverage, and
health policy changes that will affect the
care once the adolescent becomes 18 years
of age and is considered a legal adult.
This discussion should include differences
between pediatric and adult health models
of care.
■ Having discussions about how the parents
may need to move from acting as the primary
decision makers to a more supportive and
collaborative model of decision making with
the young adult.
■ Providing the family with a list of adult
health providers they may want to consider
in their selection process.
■ Introducing independent visits with the pedi-
atric health care provider without the parents
present.
■ Arranging for an introductory visit with the
adult provider so that the first interaction is
not about an exacerbation of the chronic ill-
ness, but one that is about health mainte-
nance. If possible, plan for a joint visit of the
family, the pediatric health care team, and
the adult health care team.
■ Identifying a transition coordinator or some-
one in the adult health care team who can
serve in this role for the family and young
adult (Lugasi et al., 2011).
Siblings of Children With Chronic Illness
Younger siblings often strive to model the behav-
iors of older siblings, including illness behaviors.
Focus groups held with parents, siblings, and health
care providers resulted in a comprehensive list
of psychosocial concerns specific to the experience
of school-age siblings of children with chronic
illness (Strohm, 2001). These conversations iden-
tified seven significant feelings of siblings of chil-
dren with chronic health care conditions (Strohm,
2001, p. 49):
■ Feelings of guilt about having caused the
illness or being spared the condition
■ Pressure to be the “good” child and protect
parents from further distress
■ Feelings of resentment when their sibling
with special needs receives more attention
■ Feelings of loss and isolation
■ Shame related to embarrassment about their
sibling’s appearance or behavior
■ Guilt about their own abilities and success
258 Families Across the Health Continuum
3921_Ch09_237-276 05/06/14 11:06 AM Page 258
■ Frustration with increased responsibilities
and caregiving demands
Other studies reveal more positive sibling out-
comes, pointing out that siblings develop im-
proved empathy, flexibility, pride in learning about
and caring for a chronic illness, and understanding
of differential treatment from parents based on
ability and health. Siblings are noted to be more
caring, mature, supportive, responsible, and inde-
pendent than their peer counterparts who do not
have siblings with chronic conditions (Barlow &
Ellard, 2006). Siblings are reported to have high
levels of empathy, compassion, patience, and sen-
sitivity (Bellin & Kovacs, 2006). Siblings demon-
strate learning about the disease and in being
supportive of their ill brother or sister, and some-
times assume parental roles (Wennick & Hallstrom,
2007). Children who learn about their chronically
ill sibling’s illness and its mechanisms tend to feel
more confident and competent in their ability
to support their sibling (Lobato & Kao, 2005;
Wennick & Hallstrom, 2007).
Families face the challenge of balancing the
needs of the child with a chronic condition with
those of the surrounding family, including siblings.
It has long been demonstrated that parents of sib-
lings of children with disabilities often lack the abil-
ity to give needed time and attention to siblings
because of the demands of caring for the child with
a disability; this sometimes results in siblings re-
senting the child with disabilities (Rabiee, Sloper,
& Beresford, 2005). Some parents rely on siblings
to entertain or assist in the care of the child with
disabilities, an action that puts additional stress on
the other children.
Systems of Care for Children
With Chronic Conditions
Often, bureaucracy and conditions in the health,
education, and social services systems are sources
of frustration for caregiving families. For example,
many services are provided based on diagnosis
or categorical determination of eligibility. There-
fore, children need to fit certain categories to be
eligible for services in acute care, community care,
social services, or the school system. Because clinics
and subspecialists are in place to serve certain pop-
ulations, children with uncommon diagnoses or
multiple complex chronic conditions are at a dis-
advantage, and families must seek scarce resources
and are forced to coordinate care from multiple spe-
cialists in multiple disciplines (Ray, 2003).
When a family member has a chronic illness,
the family enters into a complex network of rela-
tionships with health care providers and other
professionals in the care system. Families often
feel as if they are thrown into these relationships
(Dickinson, Smythe, & Spence, 2006). Nurses
who provide family-focused care consider impli-
cations of dynamic care systems, refer the family
to appropriate care centers, and evaluate the
forms of care provided. Understanding the vul-
nerability of families in health care provider re-
lationships helps nurses frame their family
interactions in ways that create more horizontal
than hierarchical relationships. Families are truly
the “experts” when it comes to the day-to-day
needs of their family members with chronic con-
ditions, and they want professionals to recognize
and respect this expertise. Families want profes-
sionals and community members to be informed
about their family member’s diagnosis and the
family implications. One parent described her
frustration with staff poorly trained on sickle cell
disease when she stated, “I knew we were in trouble
when the nurse looked at me and said, ‘so . . . how
long has your daughter had sickle cell disease?’
She did not even know that it was an inherited
disease” (Mitchell et al., 2007). Through their
multiple health care system encounters, care-
givers of family members with chronic health
conditions tend to develop skills that aid them in
the navigation of complex systems as they advo-
cate for their family member’s needs (Mack, Co,
Goldmann, Weeks, & Cleary, 2007). It is frus-
trating for caregivers when they encounter health
care professionals who are insufficiently in-
formed, who lack knowledge about their family
member’s condition, or who negate or discount
their expertise in providing care (Nuutila &
Salantera, 2006).
Social Support
Social support can be categorized into four types
of supportive behaviors: emotional, instrumental,
informational, and appraisal (House, 1981). The
family’s capacity to mobilize social support to man-
age crisis periods and chronic stressors related to a
family member’s health condition contributes to the
well-being of all family members (Bellin & Kovacs,
Families Living With Chronic Illness 259
3921_Ch09_237-276 05/06/14 11:06 AM Page 259
2006). Table 9-5 provides examples of the four
types of social support for families who have a
member with a chronic health condition.
Community contexts, such as the neighbor-
hood, school, or church, support the family’s de-
velopment of positive values and foster strengths
(Bellin & Kovacs, 2006). Social capital is a concept
that can be useful in understanding the commu-
nity context of health for those with chronic ill-
ness and their families. Like social support, social
capital is about resources that come from relation-
ships with other people and institutions. Social
capital includes features of social life, such as
norms, networks, and trust, that enable people to
act together toward shared objectives (Putnam,
1996). Looman (2006) defines social capital in
terms of investments in relationships that facilitate
the exchange of resources. For families who have
a chronically ill family member, social capital is
especially relevant.
When an individual has a chronic illness, the
members of the family (particularly caregivers)
are required to engage with numerous profes-
sionals and institutions in the process of manag-
ing the condition and exchanging resources. The
family benefits when a mutual investment exists
in their relationships with nurses, physicians,
teachers, other families, and neighbors. For ex-
ample, a mother might invest in her relationship
with her child’s teachers by providing them with
information about her child’s health condition,
or by helping the teacher understand the child’s
unique learning style. The teacher, in return,
might invest in a relationship with the child’s
family by scheduling additional parent-teacher
conference sessions or by learning more about
the child’s specific health condition. The benefit
of this investment in the family-school relation-
ship, where the common goal is the success of the
student, is an exchange of resources. The benefit
of this investment may also reach other students
and families if this pattern of communication
becomes a norm in the school, and if the general
level of trust among parents and teachers increases.
260 Families Across the Health Continuum
Table 9-5 Helpful Support for Families With a Chronically Ill Member
Type of Support Definition Activities Example From Case Studies
Emotional support
Instrumental support
Informational support
Appraisal support
Provision of love, caring,
sympathy, and other
positive feelings
Tangible items, such as
financial assistance,
goods, or services
Helpful advice, informa-
tion, and suggestions
Feedback given to indi-
viduals to assist them in
self-evaluation or in
appraising a situation
Listening
Offering commendations
Being present
Assisting with household chores
(e.g., laundry)
Providing respite care
Providing transportation
Assisting with physical care
Sharing resources (e.g., books,
Web sites, provider names)
Educating family members on
the health needs of the ill family
member
Informational support groups
Reviewing daily logs
Sharing written feedback from
providers (e.g., laboratory
results)
The nurse working with the Yates
family commends them by
saying, “I am impressed by the
commitment that your family has
made to making life as ‘normal’
as possible for Chloe and her
siblings.”
Devon’s parents offer to take
Chloe’s siblings for a weekend,
providing respite for the family
and giving the siblings an
opportunity to share time with
their grandparents.
Sarah’s brother David, who
also has type 2 diabetes, recom-
mends a Web site that provides
healthy recipes for individuals
with diabetes.
The nutritionist provides ap-
praisal support to Sarah during
her regular appointments, offer-
ing feedback on how Sarah is
doing with her lifestyle and
dietary changes.
3921_Ch09_237-276 05/06/14 11:06 AM Page 260
In this way, social capital facilitates the family’s
ability to acquire emotional, instrumental, infor-
mational, and appraisal support in many contexts.
FAMILY NURSING INTERVENTION
DURING CHRONIC ILLNESS
The role of the family nurse is to assist multiple
family members to interact in ways that optimize
abilities and strengths. Although chronic illness
care requires consideration of individual out-
comes, it must be addressed within the family
environment, with consideration of long-term
caregiver needs and family outcomes. Across the
life course, families use management styles, func-
tional processes, and family health routines to
address actual problems, minimize risks, and max-
imize potentials. Nurses who assess for these
styles, processes, and routines, and who then tailor
their interventions accordingly to empower and
collaborate with families, will be most effective in
meeting chronic care needs. Nurses assist families
by discussing things such as family strengths, cou-
ple time, balancing illness and family needs, de-
velopmental milestones, sibling needs, economic
restraints, and caregiver well-being (Kieckhefer,
Trahms, Churchill, Kratz, Uding, & Villareale,
2013). Moreover, family-focused nursing care
should address prevention or reduction of addi-
tional health risks, maintenance of optimal wellness
levels for all family members, development of
therapeutic care management routines, goal-
setting that enhances individual and family well-
being and integrity, and accommodating un-
planned changes. The FHM (Denham, 2003)
suggests that families have core processes (i.e., care-
giving, cathexis, celebration, change, communica-
tion, connectedness, coordination) or ways families
interact with one another. Nurses can use these
ideas as guides to working effectively with families
who have a member with a chronic illness (see
Table 9-3).
In chronic disease management, family-
focused care needs that equip these individuals
and their families with knowledge and tools to be
effective self-managers have long been lacking
(Wagner et al., 2001). Use of an empowerment
model and integrative processes to respond to
unique needs has been most successful (Hummel,
2013b; Tang, Funnell, & Anderson, 2006). An
empowerment model involves the following types
of care:
■ Patient-centered care
■ Problem-based care
■ Strengths-based care
■ Evidence-based care
■ Culturally relevant care
Moreover, empowerment acknowledges that the
person is central to chronic care self-management.
As nurses seek to empower families for chronic
illness management, they should encourage flexi-
bility, coordinate actions of multiple caregivers, use
evidence-based guidelines, help families identify
community resources, and provide education that
builds confidence and skills in multiple family
members. A need exists for more evidence about
empowerment interventions (Henshaw, 2006;
Hummel, 2013b).
Family nurses will be well served by keeping in
mind that families typically vary in four systematic
ways in their abilities to incorporate medical regi-
mens into their daily routines: remediation, redef-
inition, realignment, and reeducation (Fiese &
Everhart, 2006). Remediation refers to a need to
make slight alterations in daily routines to fit illness
care into preexisting routines. Redefinition refers
to a strategy whereby the emotional connections
made during routine gatherings need to be rede-
fined. Realignment occurs when individuals within
the family disagree about the importance of differ-
ent medical routines, and routines need to be
realigned in the service of the child’s health. The
fourth form, reeducation, arises when the family
has little history or experience with routines and
family life is substantially disorganized (Fiese &
Everhart, 2006).
Research about family health suggests that
structural behaviors or family health routines are
visible activities that family members can readily
recall and discuss from multiple perspectives
(Denham, 1997, 1999a, 1999b, 1999c). Although
family members may report similarities in rou-
tines, unique variations are common. The nested
family context is a powerful, persuasive, and mo-
tivating determinant that influences ways health
information is shared within a family and then in-
corporated into daily routines. Routines have
unique characteristics, they vary in rigidity and
timing, and members have different expectations
across families due to response to member beliefs,
Families Living With Chronic Illness 261
3921_Ch09_237-276 05/06/14 11:06 AM Page 261
values, and perceived needs. Information that fits
with perceived family needs is probably the most
likely to be incorporated into daily actions. Thus,
nursing assessment of chronic care management
extends beyond the disease and should also in-
clude ways members interact and the life patterns
already established.
Family health routines include a number of cat-
egorically different foci. Self-care routines involve
habits linked with usual activities of daily living
such as hygiene. Safety and prevention routines
are primarily concerned with health protection,
disease prevention, prevention of unintended in-
jury, and avoidance. A nurse assessing this routine
area might also be interested in discerning less
healthy habits and considering the impact of high-
risk behaviors, such as smoking, alcohol, and mis-
use of other substances, on a chronic condition.
Mental health routines are related to self-esteem,
personal integrity, work and play, shared positive
experiences, stress, self-efficacy, individuation,
and family identity. Family-care routines are re-
lated to valued traditions, rituals, celebrations, va-
cations, and other events tied to making meaning
and sharing enjoyable times. Illness-care routines
are related to decisions about disease, illness, and
chronic health care needs, and often determine
when, where, and how members seek health care
services and incorporate medical directives and
health information into self-care routines. Family
caregiving routines pertain to reciprocal member
interactions believed to assist with health and ill-
ness care needs and support during times of crisis,
loss, and death.
Families use routines to arrange ordinary life
and cope with health or illness events (Fiese &
Wamboldt, 2000). These routines are embedded
in the cultural and ecological context of families,
and highlight ways to focus on family processes
and individual and family dynamics (Fiese et al.,
2002). Nurses aiming to provide education and
counseling to individuals with a chronic illness
need to understand the unique family routines of
multiple household members and the ways chronic
care management is going to alter patterns that are
revered, cherished, and comfortable. Nurses who
collaborate with families during assessment, goal
setting, and outcome evaluation increase the like-
lihood of providing effective nursing actions that
get results that are sustainable over time.
CASE STUDIES: FAMILIES LIVING
WITH CHRONIC ILLNESS
It is important to recognize that all chronic diseases
are not the same. When diagnosis differs, individ-
ual and family needs can differ as well. Other fac-
tors also enter into the picture. For example, the
age, gender, education, culture, and race of the in-
dividual diagnosed, as well as availability of family
members, can be critical factors in ways diseases are
managed in family situations. This section explores
the ways the Yates and Current families address
chronic illness management. The Yates family has
a daughter who has been diagnosed with type 1
diabetes and the family has been living with this sit-
uation for a while. The second family, the Cur-
rents, provides an example of working with a family
who has an adult member living with Parkinson’s
disease. Although these two chronic diseases share
some similar characteristics for the families living
with chronic illness, some unique qualities also
emerge. The ways and timing of diagnosis can
differ. Treatments can be different. Living with
the disease over several decades could mean that
new treatments become available. Families living
with these two conditions often face different chal-
lenges as a result of individual motivation and
knowledge, family member characteristics, family
developmental stage, and demographics. Family-
focused nurses recognize that multiple factors enter
into understanding why individuals successfully
manage their disease and reasons why they are at
risk for complications.
262 Families Across the Health Continuum
Case Study: Yates Family
Chloe Yates, age 13, was recently admitted to the pediatric
intensive care unit with ketoacidosis, a complication of type 1
diabetes. She passed out at school after vomiting and
complaining of fatigue and was transported to the hospital
via ambulance. On her hospital admission, her serum glu-
cose level was 350 mg/dL. Her glycosylated hemoglobin
(Hba1c) was 11%, indicating poor metabolic control over
the past 3 months. Chloe has been in the hospital for
2 days and is getting ready to be discharged home today.
Chloe’s parents, Devon and Bonita Yates, were sur-
prised when they found out how poorly Chloe’s metabolic
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Families Living With Chronic Illness 263
control had been before her admission. See Figure 9-2 for
a detailed Yates family genogram. They believed that their
family had open communication and that they knew what
was happening with their children. Chloe told her parents
that her glucose levels were “fine.” Chloe is an honor-roll
student at school, active in basketball and soccer, and well
liked by her peers. Devon, an African American man, is
college educated and works for a thriving law firm. Bonita,
a college-educated woman with Hispanic roots, is em-
ployed as a business manager in a large firm.
The Yates family recently experienced several stressors
besides this new hospitalization. Bonita’s father, Henry,
passed away 2 months ago after a long bout with
Alzheimer’s disease, and the family recently moved into a
new and larger home in a racially diverse urban neighbor-
hood. The children are enrolled in a private school, so the
move did not affect their school relationships. Chloe and
her younger siblings, Leslie and Trevor, appear to have
adjusted to the new living location and seem content with
their new neighborhood friends. Chloe has continued to
receive primary care services in the clinic where the long-
term pediatric nurse practitioner has come to know the
family quite well.
Chloe was diagnosed with diabetes 2 years ago and
was 11 years old at the time. When diagnosed, she spent
several days in the hospital. Bonita accompanied her to a
series of diabetes education classes, and they shared what
they learned with the rest of the family. Chloe easily as-
sumed responsibility for monitoring her glucose levels and
administering her insulin when she was diagnosed. At first,
the family struggled to make needed changes to their
family health routines based on Chloe’s medical needs—
changes in Chloe’s dietary needs, daily regulation of her
insulin, bouts with hypoglycemia, and frequent monitoring
of blood glucose levels that required significant manage-
ment. The family has tried to adopt dietary patterns that
support Chloe’s needs. Bonita learned some new things
about counting carbohydrates, avoiding processed foods
with high fructose, and preparing foods in nutritious ways.
For example, Bonita avoids buying chips and now shops
for more nutritious snack items that will not elevate Chloe’s
blood glucose level. The family incorporated the manage-
ment of her diabetes into the family routines, and it seems
less foreign to them now. Leslie and Trevor were unhappy
with the dietary changes at first, but they have made a
positive adjustment over time. The family makes a point of
eating at least one meal together daily, which allows each
family member to talk about their day. The family recently
started “highlight/lowlight” time at dinner, during which
each family member shares one high point and one low
point about his or her day. Chloe’s highlights focused on
Chloe
13 yr
Leslie
11 yr
Trevor
4 yr
In hospital ICU
with DK 17
Henry
Died 2 months ago Died 5 years ago
BonitaDevon
FIGURE 9-2 Yates family genogram.
(continued)
3921_Ch09_237-276 05/06/14 11:06 AM Page 263
264 Families Across the Health Continuum
her new friend at school, Brian. Her lowlights have focused
on the “hassle” of checking her glucose and having to
eat differently than her friends, something she is finding
embarrassing.
Leslie and Trevor are staying with Devon’s parents while
Bonita and Devon prepare to take Chloe home from the
hospital today. Leslie and Trevor have been asking about
Chloe for several days, as they are worried about her “sugar.”
Leslie, age 11, has been especially concerned about Chloe.
She and Chloe have been arguing lately and Leslie feels it
might be her fault that Chloe became ill. Trevor, age 4, has
been asking if he can use Chloe’s “finger pokers” and say-
ing, “I have diabetes too!“ Devon and Bonita share with the
nurse their beliefs that he wants some of the special
attention that his sister is getting at the hospital. These par-
ents are worried about being “spread too thin” as they try
to fulfill their employment responsibilities, attend for each
child’s unique needs, and provide Chloe with the medical
care she needs to manage the diabetes.
Chloe’s parents are meeting with the nurse today
as they prepare for Chloe’s discharge home. When the
nurse asks whether they thought Chloe fully understood
how to manage her diabetes, Devon said, “She not only un-
derstands, she could teach it! We just can’t figure out why
she had such a setback recently.” This family is experiencing
a transitional stress that is typical of adolescent behavior
and also typical of adolescents living with a chronic illness.
Family Nurse’s Reflection on the Yates Family
Using Evidence-Based Practice:
In poor-functioning families of children with type 1 dia-
betes, metabolic control is also likely to be poor, and this
seems to be particularly true for youths older than
12 years (Fiese & Everhart, 2006). In studies of families
managing childhood diabetes, reports of a parent and
child working together as a team around daily manage-
ment tasks were associated with better adherence (Fiese
& Everhart, 2006). Mothers in families with children who
have type 1 diabetes reported having less time to engage
in activities with their children compared with mothers who
do not have a child with diabetes (McClellan & Cohen,
2007). Parents of children with type 1 diabetes are
more likely to describe their families as less achievement
oriented than families without children who have diabetes
(McClellan & Cohen, 2007).
Although nurses should be aware of the potential for
family conflict around diabetes management, they should
not assume that poor medical adherence is a product of
the conflict observed, because conflict and poor medical
adherence are developmentally normal processes in families
with adolescents (Dashiff, Bartolucci, Wallander, & Abdullatif,
2005). It is important to keep in mind that conflict occurs in
all families, regardless of the age of individual family mem-
bers. What is vital is the way conflict is handled and resolved.
Nurses can assist families by suggesting effective communi-
cation techniques and developmentally appropriate strate-
gies to address problems and areas of conflict linked with
healthy functioning and development. Studies of psychoso-
cial well-being in families of children with chronic conditions
too often focus on psychopathology and lack of adjustment,
with less attention given to well-functioning and positive
growth after childhood illness (Barlow & Ellard, 2006). More
recent research on sibling relationships measures the posi-
tive attributes that occur in families with a child with a
disability, instead of only pathologizing this experience
(Barlow & Ellard, 2006; Bellin & Kovacs, 2006; Lobato &
Kao, 2005; Wennick & Hallstrom, 2007).
Little is known about the best ways to educate care-
givers about ways to manage this disease in the family
household and little to no consideration is given to individ-
uals’ social background (Glasdam et al., 2012). Findings
from a recent study that considered family support and
adherence to medical regimen identified that persons with
diabetes felt sabotaged by family members when mem-
bers knew what was needed to manage the disease, but
were unmotivated to provide support needed to make
changes or offered temptations to indulge in contradictory
activities (Mayberry & Osborn, 2012). These researchers
concluded that there is a need for nursing actions that
enhance family members’ motivation and assist them
to choose behavioral skills that empower their family
member diagnosed with diabetes.
In families with adult members who have diabetes,
family health routines are instrumental in self-management
(Collier, 2007; Denham, Manoogian, & Schuster, 2007).
A diabetes diagnosis affects previously constructed health
routines; these old behaviors often need to be decon-
structed and new ones formed in accord with unique
family needs (Denham & Manoogian, unpublished). In
diabetes self-management, differences in family members
(e.g., gender, age, motivation, relationship) have implica-
tions for member support or threats to dietary and other
care routines (Schuster, 2005).
As a nurse working with persons with various types of
diabetes, it is important to note that a one-size-fits-all solu-
tion is not appropriate. Nursing assessments must consider
the various ways conditions might affect individual mem-
bers and the family as a whole. Chronic diseases may have
similar diagnostic factors involved and symptoms might be
similar, but the human and family response of different
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Families Living With Chronic Illness 265
households can be extremely different. Therefore, developing
plans of care, nursing actions, and ideas about family em-
powerment must be based on the unique circumstances
experienced by each family.
The Yates family case study illustrates the multiple
factors that face families who have a child with a chronic
illness. The Yates family has three children, ages 13, 11, and
4. Chloe, the oldest child, has had diabetes for 2 years and
has done well with parental guidance and self-management
until recently. As a young teen, Chloe is moving into a new
developmental stage. Chloe’s disease management is threat-
ened by things outside the family household, such as peer
pressure and larger periods outside of the home environ-
ment with friends that involve food choices.
In the Yates family case study, Leslie’s and Trevor’s
reactions are typical for siblings of children with chronic
conditions. Leslie, for example, feels responsible for Chloe’s
hospitalization, and has expressed possible guilt linked with
recent arguments. Trevor’s desire to have diabetes like his
sister may represent his recognition that Chloe’s diabetes is
the source of much attention from their parents, attention
that may be drawn away from him.
Chloe’s parents have rearranged their lives to incorpo-
rate the management of her diabetes, but they also face
the continued needs of their other children. These parents
need to recognize the ways Leslie’s and Trevor’s develop-
mental needs influence their actions and consider possible
ways the psychosocial development of children at different
ages will be attended to in the future (Bellin & Kovacs,
2006). The experience may catalyze these siblings’ abilities
to tap into inner resources and develop empathy, compas-
sion, patience, and sensitivity. Leslie and Trevor will benefit
from age-appropriate, accurate information about Chloe’s
diabetes and from knowing that their responses are normal.
The Yates family demonstrates several examples of a
cohesive family unit. For example, the family members
value time together at meals and encourage shared feel-
ings. Several studies have shown that high family cohesion
is associated with adherence in children and teens with
treatments for type 1 diabetes (Cohen, Lumley, Naar-King,
Partridge, & Cakan, 2004; Leonard, Jang, Savik, & Plumbo,
2005). Cohesiveness allows for shared understanding,
respect for differences of opinions, and an emotional
investment in keeping the family together (Fiese & Everhart,
2006). The Family Management Style Framework could be
useful for nurses in considering the Yates family (Knafl &
Deatrick, 1990, 2003; Knafl et al., 2012). Chloe’s parents
attempt to focus on the normal aspects of Chloe’s early
adolescence, and they see her as normal in many ways.
For this reason, the Yates family might be viewed as
accommodating. They have, up to this point, felt confident
about Chloe’s ability to manage her diabetes independ-
ently, but perhaps Chloe’s transition into adolescence will
require the family to reassess their assumptions. The Yates
family has the resources and cohesiveness to negotiate the
developmental changes that occur along the way.
Chloe’s parents were surprised to learn that her meta-
bolic control is poor, as she had previously managed re-
sponsibilities linked with diabetes self-management with
ease and skill. An early adolescent who has successfully
managed diabetes may find it difficult to continue to
manage the condition while simultaneously negotiating a
move to social independence. Chloe’s desire to fit in with
her peers may be at odds with her need to check her
blood glucose levels before meals, especially at school,
and with her dietary limitations. Chloe’s communication
with her parents is particularly important at this transitional
time. Parents are challenged to provide the adolescent with
a level of autonomy that is developmentally appropriate
while simultaneously monitoring abilities to adhere to
complex medical regimens. Studies have shown that the
more teens (particularly girls) perceive their mothers as
controlling, the greater the negative effect on adherence
(Fiese & Everhart, 2006).
It is possible that providers and parents may overesti-
mate adolescents’ desire for autonomy and confidentiality,
especially when illness-related (Britto et al., 2007). Adoles-
cents, who tend to be more peer oriented, may wish to
reduce the power differential between themselves and
their health care providers. They might prefer that providers
use direct communication styles. Adolescents with chronic
illnesses may actually have fewer expectations for confi-
dentiality and greater needs for parental involvement in
care than healthy peers (Britto et al., 2007). Thus, nurses
should not assume that all teens are seeking independ-
ence and autonomy just because they have reached
the adolescent stage. In fact, nurses should consider the
uniqueness of individual and family situations before
giving advice and avoid passing judgment.
The family nurse should work with Chloe’s parents’ mo-
bilized resources to help them meet the needs of all their
family members. See the Yates family ecomap in Figure 9-3.
The grandparents provided care for their two younger chil-
dren while the parents prepared to take Chloe home from
the hospital. In addition, the nurse could facilitate a parents
and Chloe meeting with the school nurse and teachers. By
helping families to assess their resources and determine
what they still need the whole family will enjoy improved
health outcomes.
(continued)
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266 Families Across the Health Continuum
FIGURE 9-3 Yates family ecomap.
D/C nurse
PNP
New
school
School
sports
Boyfriend
Brian
School
friends
Devon’s
parents
New house
New
neighborhood
ICU doctors
Strong relationship
Weak relationship
Tense relationship
Direction of
energy flow
Current Family Case Study
Ben Current is a 68-year-old widow, diagnosed with
Parkinson’s disease at the age of 58. He owns and farms
his 500-acre family ranch in eastern Oregon on which he
raises cattle and hay. This case study is presented through
the lens of Rolland’s Chronic Illness Framework.
Illness Onset:
Parkinson’s disease (PD) is a slowly progressive neurode-
generative brain disorder with motor symptoms of slow-
ness, rigidity, and tremor. There are also a host of nonmotor
symptoms that include autonomic, neuropsychiatric (e.g.,
dementia and depression), and sleep complaints. The
cause of PD is not known and treatment is aimed at mini-
mizing disability and maintaining optimal quality of life. At
this most recent visit to the Movement Disorder Clinic, Ben
presents with a number of motor and nonmotor concerns.
In addition, he has low adherence to treatment recommen-
dations and his family is expressing strain from the growing
burden of care.
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Families Living With Chronic Illness 267
Course of Illness:
When individual family members have a progressive
chronic illness, such as Ben with PD, the increasing
disability requires families to make continual changes in
their roles as they adapt to the losses and needs of the
family member. Ben’s family is at the Movement Disorder
Clinic today to seek help with Ben’s increasing symptoms.
Several family members express feeling of stress and are
exhausted with the routine and ongoing demands of his
progressive symptoms.
There are two assessment tools used to evaluate the
progressive aspects of PD. The first is the Hoehn and Yahr
scale. This instrument identifies five stages based on motor
symptoms: Stage 1 is unilateral motor involvement; Stage 2
is bilateral movement involvement; Stage 3 is mild to
moderate disease with impaired balance; Stage 4 is severe
disease with marked disability; and Stage 5 is confinement
to bed or a wheelchair. It is important for family nurses to
know that any reference to staging of PD is a quick look at
the condition at that point in time during that visit and is
not meant to suggest a timeframe of progression. It is also
worth noting that it only evaluates motor symptoms and it
is important to realize that nonmotor symptoms, such as
depression, can cause as much (or more) disability as the
motor symptoms. The second instrument, the Unified
Parkinson’s Disease Rating Scale (UPDRS), is a detailed
instrument that assists family nurses to assess the daily
needs of the ill family member and the family caregiver in
six areas of function: functional status, level of activities of
daily living, motor function, mood, cognition, and treatment-
related manifestations.
Outcome—Trajectory of Illness
and Incapacitation:
Typically, people with PD can live 20 years or more from
the time of diagnosis. Death is usually secondary to
symptoms of immobility. It is the 14th leading cause of
death in the United States. There is currently no cure
for PD. The stages of the illness, as discussed above, are
progressive in nature. Ben has been in Stage 3 of the
disease and symptoms suggest he is progressing to
Stage 4. The focus of this visit is to minimize disability
through symptom management and to help the family
find resources in its local community to support Ben and
minimize caregiver strain. If these interventions improve
his compliance with medication, the family may maintain
Ben in his current Stage 3.
Time Phase: Brief Review of Ben’s
Initial Diagnosis:
At initial diagnosis, Ben, 58 years old, was, in his words,
“just not doing well.” He was worried about a tremor in
his left hand, but at that point it did not interfere much
with his daily work or activities. Sarah, his wife, had taken
over writing the paychecks for their three ranch hands
and all of the bills because Ben’s handwriting had started
to deteriorate. He noticed that he was slowing down, but
attributed his increasing stiffness of legs and arms to
“getting old” and his demanding physical lifestyle. What
brought him in to see his health care provider was dizzi-
ness and falls. Sarah was worried that he would get dizzy
while operating the farm machines. When he came
home with a cut lip, swollen ankle, and scraped-up
shoulder, Sarah demanded he see the family nurse prac-
titioner (FNP), who is located 50 miles from his ranch.
The FNP suspected Ben had PD, but sent him to the
Movement Disorder Clinic and specialists in Portland,
Oregon, which is 330 miles from where Ben lives. Since
then, Ben has been managed primarily by his FNP with
consultation and supportive assistance from the special-
ists, who see Ben every 6 months. Due to weather and
other family events, however, Ben and his family have
not been to the clinic for a year.
Mid–Time Phase and Family Functioning:
Ben and his family have been living and adapting to his
progressive PD for 10 years. See Figure 9-4, which shows
the Current family genogram. Early on, the adaptation was
relatively smooth as Ben responded well to medication
intervention and his wife Sarah was the major support
person. The family experienced a major change in the
family involvement and management of Ben’s illness
when Sarah died 2 years ago from a heart attack at age
66. Since that time, 27-year-old Logan, Ben’s grandson,
has been living at the ranch and helping to provide
support and care for Ben.
Julie, the NP specialist in the Movement Disorder
Clinic, consulted the detailed family genogram in the
chart. She noted that the family genogram had not been
updated since Sarah’s death; therefore, she updated it.
At this visit, the family members who are present include
Ben, his daughter Kathleen, his daughter Carole, and his
grandson Logan, who is the primary caregiver. Logan ex-
presses feeling overwhelmed with his caregiver role and
work-time conflict. He feels like Ben needs more assis-
tance. As both Kathleen and Carole are worried about
Ben’s safety while Logan is working on the ranch during
the day, they report alternating days they come to spend
with Ben. In order to facilitate uncovering the family stres-
sors as well as the current medical condition of Ben, Julie
decided to write issues in a table format that may then
easily be used as a decision-making grid for the family.
Julie completes her physical assessment of Ben’s motor
abilities, which are incorporated into the table. Ben fills
(continued)
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268 Families Across the Health Continuum
FIGURE 9-4 Current family genogram.
Ben
68 yr
Ross
56 yr
Logan
32 yr
James
25 yr
Kathleen
40 yr
Ashley
25 yr
Glen
45 yr
Tyler
20 yr
Carole
45 yr
2011
Married
1963
Grace
Sonja
25 yr
Matt
29 yr
Jenny
27 yr
Jarad
3 yr
Brad
5 yr
Sarah
68 yr
out a geriatric depression assessment instrument. Logan
completes a caregiver strain assessment instrument.
Salient family issues in this phase for the Current family
as it struggles to find a balanced family life and normalcy in
functioning include the following:
1. Pacing and avoiding burnout: Logan is overwhelmed
with being the primary caregiver for Ben. When Ben
was more independent and the PD medications
worked well at relieving Ben’s motor problems, Logan
primarily had to focus on cooking and being sure that
Ben took his medications. With advancing executive
function (short-term) memory issues, the increased
number of falls, and concerns about his grandfather’s
safety, Logan feels that he cannot manage his own
work on the ranch and taking care of Ben. In the last
month, Kathleen and Carole have been alternating
days at the ranch to provide care for Ben during the
day while Logan is working.
2. Reorganization of family roles: Logan, Kathleen, and
Carole are all experiencing role overload as they all
spend considerable time as the caregiver. Logan has
expressed that he cannot continue to provide care
for Ben in the home in the same way that he has in
the past. The whole Current family is committed to
keeping Ben at home as long as possible. Ben is
clear that he does not want to leave the ranch. Tyler,
20-year-old grandson and Logan’s cousin, stated that
he would move into the ranch to help as he works
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Families Living With Chronic Illness 269
there and this would save him time commuting to
and from work. Logan would like Tyler to live at the
ranch, but insists that caring for Ben requires more
than the two of them could provide.
3. Sustaining autonomy for all members of the family:
Ben is struggling with the advances in his PD that he
sees in himself; therefore, he continues to drive and
tries to do some work on the ranch knowing that he
is not safe. Logan is stressed to the maximum with
role strain overload in the caregiver role.
4. Successfully grieve the loss incurred from the disabil-
ity or chronic condition: All the family members pres-
ent shared concerns about the “declining” status of
Ben’s health. The Current family is a close-knit family
who are actively involved in Ben’s life and care. Ben
has held a strong patriarchal role for the family. Each
family member is grieving the loss of Ben in this role
and having to adjust to changes that are brought
about by the progressive nature of PD.
The family discussed several options for seeking
additional help and other interventions during the family
meeting:
1. The family discussed having Ben move to an assisted-
living facility that is about 30 miles from the ranch.
Ben vetoed this option of care at this time. He insists
that he will stay on the ranch as long as possible.
2. The second option was to hire a full-time caregiver
who would either live at the ranch or in the town.
This approach would mean that Logan would provide
nighttime care for Ben. The cost of this avenue was
considered too much at this time. All family members
agreed that they would like to save financial resources
for when Ben may need nursing home placement.
3. The third option considered by the family was to ask
Ben’s sister Grace if she would like to come live on
the ranch where she grew up, and to help provide
care for Ben. Grace, who was recently widowed and
has no children, has a solid relationship with Ben.
This option would relieve Logan, Kathleen, and Carole
of many of the immediate daily caregiver responsibili-
ties. Tyler could also move to the ranch and assume
some of the caregiving tasks or home maintenance in
the evenings along with Logan. Carole mentioned that
she had briefly brought up this idea with Grace. The
family decided to have Aunt Grace come out for a
trial run and determined that they would explore
having a home health aide come to the ranch a
couple of days a week to help with Ben’s hygiene.
The family also agreed that they would explore having
a shower with a chair installed. The family genogram
was updated to include Grace and to show Grace,
Ben, Logan, and Tyler all living in the same household.
4. After a visit to the physical therapist during their time
at the Movement Disorder Clinic in Portland, Logan
was excited about the possibility of all the grandsons
working together to build a flat walking trail not far
from the ranch house for Ben that would incorporate
many of the physical therapy exercise strategies that
may help strengthen his muscles, improve agility, and
help decrease the freezing episodes. They would put
several logs at varying heights for him to practice high
stepping. They could increase his stride by placing
stepping stones across the creek. They would make
the trail so that it had several direction changes and
have Ben walk between two trees that were shoulder
width. Logan agreed that he would spearhead this
venture with all the cousins.
5. Julie worked with Logan and Ben on medication
reconciliation. Together they designed a medication
administration chart to help the family caregiver and
Ben improve medication adherence. See the table
below.
6. Julie made referrals to speech therapy to assist Ben
with his soft voice (hypophonia). Kathleen agreed to
accompany Ben to this part of the visit in an attempt
alleviate Logan of some caregiving responsibilities.
7. Julie sent a written summary of the visit to the FNP,
who is Ben’s primary care provider. The summary
included a suggestion to address Ben’s sleep
problems and repeat the study at the sleep clinic,
perhaps fitting him with a different continuous
positive airway pressure (CPAP) mask, as many
more are available now.
8. Ben agreed to stop driving and surrender his license
only if he could still drive on the ranch.
3921_Ch09_237-276 05/06/14 11:06 AM Page 269
270 Families Across the Health Continuum
Score of 2: moderate mem-
ory loss with disorientation
and moderate difficulty han-
dling complex problems:
needs prompting for some
activities of daily living.
Score of 0: no problems.
Score of 2: sustained depres-
sion (1 week or more).
When asked, Ben reports
feeling sad and depressed.
He has made several state-
ments of low self-esteem
and how he is useless on the
ranch anymore.
Score of 1: less assertive
than usual; more passive.
See above. Ben does report
feelings of anxiety at times.
Score of 2: when “on” and
“off” or at end of dosing pe-
riod as Ben has hypophonia
due to his PD.
Score of 1: slight but definite
excess of saliva in mouth;
has nighttime drooling.
Score of 3: severely affected;
not all words are legible.
Score of 2: can cut most food,
although clumsy and slow;
some help needed; this is be-
coming more of an issue and
before Ben didn’t need any
assistance from Logan.
Score of 2: occasional assis-
tance with buttoning, getting
arms in sleeves.
Ben wants to continue to
drive during the day to do
some errands, especially as
Logan works during the day
on the ranch. Ben is not driv-
ing safely especially with skills
such as pulling out on the
highway or turning left when
traffic is present. In addition,
Ben got lost on the ranch last
week while trying to check on
an area of fencing.
Family asks if Ben should be
started back on an antide-
pressant medication. He was
taking one right after Sarah,
his wife, died 2 years ago,
but he stopped quite a
while ago.
Logan reports that Ben
repeatedly asks about the
same aspect of work on the
ranch; such as completing
the corral repair.
Family reports that Ben is
hard to hear and they feel as
though they are always asking
him to repeat what he says.
Ben says this is annoying but
not a problem.
Kathleen has assumed book-
work for the ranch.
Logan and Ben eat breakfast
and dinner together. Logan
helps Ben when this is an
issue. Logan has been doing
all of the cooking.
Logan helps Ben in the
morning and at night with
changing clothes. Ben strug-
gles some at home in getting
pants zipped and buttoned
after toileting.
Discuss Ben surrendering
his license. Allow him to
continue to drive during
daylight on the ranch as
long as someone is with
him.
Start on an SSRI medica-
tion. The prescription has
been faxed to the local
pharmacy in Joseph, OR,
and will be there for the
family to pick up when they
get home.
Need to build this into
medication daily schedule.
Consider adding an anxiety
medication but will hold off
for now. Discuss next visit
or during phone call with
local FNP.
Referral to speech therapist
while here during this visit
to review with family some
simple vocal exercises that
will help Ben speak louder.
Suggest Ben chew gum or
suck on hard candy if this
bothers him as it will stimu-
late swallowing.
No further interventions at
this time.
Kathleen and Carole agreed
to both bring home cooked
meals for Logan to heat up.
Kathleen and Carole take
turns food shopping.
Suggest overalls that don’t
require buttons or pants
with Velcro closures. Use
slip-on shoes. Due to bal-
ance concerns, suggest Ben
sit down when dressing.
Presentation of Ben’s mid-phase Parkinson Disease symptoms using some
of the Unified Parkinson’s Disease Rating Scale as format
Ben’s Presentation and Score Family Concerns/Problems Suggested Actions
Mentation, behavior and mood
IQ impairment
Thought disorder
Depression
Motivation-initiative
Activities of daily living
Speech
Salivation
Handwriting
Cutting food and
handling utensils
Dressing
3921_Ch09_237-276 05/06/14 11:06 AM Page 270
Families Living With Chronic Illness 271
Score of 2: needs help to
shower or is very slow in
hygienic care.
Score of 2: can turn alone or
adjust sheets, but with great
difficulty.
Score is between a 2 and 3:
Ben falls often but not daily.
Sometimes he has fallen
more than once in a day.
Ben reports being dizzy
when he stands (orthostatic
hypotension).
Score of 3: Ben frequently
freezes and occasionally falls
from freezing.
Score of 2: moderate diffi-
culty. Ben refused to use a
cane, but grandson Tyler
made Ben a walking stick
which he now uses. Ben has
bradykinesia with a weak
push off, reduced leg lift,
small stride length, lack
of right arm swing and a
narrow stance.
Score of 2: with complaints of
numbness, tingling and fre-
quent cramp and constant
ache in calves and lower back.
This is new development.
Logan is embarrassed by hav-
ing to help his grandfather
shower. In addition this adds
increased caretaking time to
Logan’s day.
Logan was concerned as he
didn’t even think about this
aspect of help his grandfather
might need.
All family members are very
concerned about Ben falling
and the difficulty he has get-
ting up from the fall. Ben
walks on a regular basis. He
has not kept up with his
physical therapy in the last
year. Ben seems to be stiffer
and has more abnormal
movements even on his
medications.
See above. Explore more to
see when Ben is freezing,
such as, during a turn, going
through doorways, at the start
of walking, or when he is
doing something that re-
quires him to take a step
back.
See above. After much dis-
cussion Ben admitted that
had trouble following his
medication regimen during
the day when Logan was at
work. He also noted that he
had been taking more
Sinemet when he wanted to
go out.
Discuss safety adapta-
tions in the shower, i.e.
chair, grab bars. Discuss
not bathing every day.
Refer to Occupational
Therapy to see if there
are assistive devices for
brushing teeth.
He will use silk PJ bot-
toms to decrease the fric-
tion of turning. Explore if a
bed rail can be placed on
the bed. Discuss the
weight of the covers or
blankets used at night.
Family will increase fluids
and get some support
stockings to keep blood
from pooling in his ex-
tremities. Have Kathleen
and Carole complete a
fall safety check in the
home environment to
help identify. Check to be
sure Ben has cell phone
on him or a cordless
phone is within reach so
he can call if he falls
when alone.
Review strategies with
Ben to help him get going
when he freezes while
walking.
See above. Referral to PT
for assistance in walking.
Starting Ben on SSRI for
depression may help
decrease pain sensations.
Stretching and heat may
relieve pain in calves.
(continued)
Presentation of Ben’s mid-phase Parkinson Disease symptoms using some
of the Unified Parkinson’s Disease Rating Scale as format—cont’d
Hygiene
Turning in bed and
adjusting bed clothes
Falling
Freezing when walking
Walking
Pain
3921_Ch09_237-276 05/06/14 11:06 AM Page 271
Ben reports that he has in-
somnia. He has difficulty stay-
ing asleep. Before diagnosed
with PD, Ben was assessed for
sleep apnea in a sleep clinic.
He reports that he dislikes the
CPAP machine and the mask
on his face, so he doesn’t use
it. He thinks he sleeps about
4 hours a night. He has day-
time sleepiness.
Ben reports that has been
having periods of excessive
sweating . . . almost like he
was caught in a rain storm.
Ben has a long history of
constipation, even before
diagnosis.
Ben reports nocturia, which
might contribute to his
insomnia.
Logan hears Ben up at all
hours of the night, which
interferes with his sleep. Ben
has fallen at night too, which
adds to Logan’s vigilance of
getting up to check on Ben.
Note that Ben was given a
diuretic for hypertension.
Explore time of day he is
taking this medication.
Will discuss with FNP about
having Ben reassessed for
sleep at the sleep clinic in
Pendleton, OR.
Have Ben keep a simple
sleep log if possible.
Check on medications
that Ben is taking and
make sure that the timing
is not affecting sleep.
Checking the timing of
medications as these may
be happening as the dos-
ing is ending or the “off”
periods.
As Ben is sweating
excessively at times,
consider he may be dehy-
drated . . . set up a plan so
he drinks about 1500 mLs
of fluids a day. Continue
daily dose of Miralax.
Be sure there is a night-
light in the bathroom and
rugs in the bathroom.
See the Current family ecomap in Figure 9-5.
Presentation of Ben’s mid-phase Parkinson Disease symptoms using some
of the Unified Parkinson’s Disease Rating Scale as format—cont’d
Other complications
Sleep
Excessive sweating
Constipation
Urinary Problems
Pharmacy
Physical
therapist
Carole
Kathleen
Tyler
Ben
Logan
Grace
Julie
FNP
Speech
pathologist
Sarah
FNP
Strongly attached
Moderately attached
Slightly attached
FIGURE 9-5 Current family ecomap.
3921_Ch09_237-276 05/06/14 11:06 AM Page 272
SUMMARY
A family focus on care should not be considered
optional when it comes to chronic illness. The
long-term effects of chronic health conditions
affect individuals and families differently than acute
health events.
■ Although the needs families experience may
be similar initially, the duration of the illness
alters the ways care is managed and perceived
over a long life course.
■ The severity, complexity, and longevity of
care needs associated with chronic conditions
can alter a desired or expected future into
one that dramatically revolutionizes the lives
of entire households.
■ Financial costs and family resources are often
highly taxed by years of debt and stress that
would not be expected if a chronic condition
had not occurred. Some conditions may
worsen over time or require endless amounts
of attention that can become especially bur-
densome as the chronically ill person ages
and economic or family resources are
exhausted.
■ Some children with SHCN and adults may
require extraordinary adaptations by parents,
siblings, and others that strain relationships.
■ Although the chronic illnesses of children
may be primarily genetic or environmental in
nature, many of the adult chronic conditions
are linked with lifestyle behaviors.
■ Healthier lifestyles can reduce risks for some
chronic conditions and can prevent or delay
many complications from these diseases.
■ Family-focused care aimed at meeting fam-
ily needs when a member or members have
chronic illness requires nurses equipped
with knowledge about families and their
interactions.
■ Optimal nursing care for those with chronic
illness involves nurses who are knowledge-
able about developmental alterations, willing
to hear and listen to the voiced needs without
judgment, and able to become collaborators
that empower multiple household members
to reorganize routines and manage existing
resources.
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277
Families in Palliative
and End-of-Life Care
c h a p t e r 10
Rose Steele, PhD, RN
Carole A. Robinson, PhD, RN
Kimberley A. Widger, PhD, RN
C r i t i c a l C o n c e p t s
■ Palliative care is both a philosophy and a type of care.
■ Palliative care is “whole person” care that involves a focus on quality of life, or living well, for all family members
when they are dealing with a life-limiting illness. It can start long before the end-of-life period, as early as at the diag-
nosis of a life-limiting illness, and extend beyond death to bereavement.
■ The principles of palliative care are applicable in a sudden, acute event—such as an accident, suicide, or myocardial
infarction—though the context is different because there is a shorter time span in which to work with a family. A pallia-
tive approach complements the disease orientation that is often the focus of acute care.
■ The majority of palliative care is provided by family caregivers.
■ Skilled nursing interventions and relationships between nurses and families are crucial in creating positive outcomes
in palliative and end-of-life care.
■ Interprofessional teamwork is essential in palliative and end-of-life care and the team is inclusive of family members.
■ People who have advanced, life-limiting illnesses worry about being a burden on their families and about the conse-
quences of their death on their families. Family members worry about burdening their ill member. Everyone involved
is often afraid. This fear can lead to communication problems, isolation, and lack of support within the family.
■ Perceived barriers to nurses providing quality end-of-life care may be ameliorated when the nurse understands
palliative care principles.
■ Nurses need strong patient and family assessment and intervention skills to provide optimal palliative and
end-of-life care.
■ End-of-life decision making is a process that involves all relevant family members identified by the ill person and
evolves over time. Advance care planning is an important part of this process.
■ A “good” death is one that happens in alignment with patient and family preferences.
3921_Ch10_277-320 05/06/14 11:08 AM Page 277
Nurses encounter families who are facing end-of-
life issues in virtually all settings of practice. From
newborns to seniors in their nineties and older, peo-
ple die, and their families are affected by the expe-
rience. Nurses are in an ideal position to influence
a family’s experience, either positively or negatively.
Ideally, nurses facilitate a positive experience for
families, one that will bring them comfort in the fu-
ture as they recall what it was like when their loved
one died. Unfortunately, not all families have a pos-
itive experience, and it is often because health care
providers do not know how to work effectively with
families at this challenging time (Andershed, 2006).
Yet, palliative and end-of-life nursing can be ex-
tremely rewarding and professionally fulfilling. It
offers an opportunity for personal growth in pa-
tients, families, and health care providers; interac-
tions among all concerned are especially meaningful
(Webster & Kristjanson, 2002).
This chapter details the key components to con-
sider in providing palliative and end-of-life care, as
well as families’ most important concerns and
needs when a family member experiences a life-
threatening illness or is dying. It also presents some
concrete strategies to assist nurses in providing op-
timal palliative and end-of-life care to all family
members. More specifically, the chapter begins
with a brief definition of palliative and end-of life
care, including its focus on improving quality of life
for patients and their families. The chapter then
outlines principles of palliative care and ways to
apply these principles across all settings and regard-
less of whether death results from chronic illness
or a sudden or traumatic event. Two palliative care
and end-of-life case studies follow.
PALLIATIVE AND END-OF-LIFE
CARE DEFINED
Palliative care and end-of-life care are not synony-
mous terms. End-of-life care focuses exclusively on
the immediate period around death, whereas pal-
liative care includes end-of-life care but extends for
many months, even years (especially in children),
and can coexist with treatments aimed at curing
an illness (World Health Organization [WHO],
2006). Palliative care focuses on improving the
quality of life of patients and their families facing
problems associated with life-limiting illness. Pal-
liative care helps families in these situations live
well by preventing and relieving suffering through
early identification and excellent assessment and
treatment of pain and other physical, psychosocial,
or spiritual problems (WHO, 2006). Employing a
team approach, palliative care offers a support sys-
tem to help patients live as actively as possible, and
to help families cope during the patient’s illness and
their own bereavement. Life is affirmed and dying
is regarded as a normal process (WHO, 2006).
Focus on the family as a unit is a key principle
in palliative care. Nowhere is this more evident
than when a child is the patient. Support targets
both individual family members and the family as
a whole. The age range of patients receiving pe-
diatric palliative care, typically 0 to 19 years of
age, requires that children’s developmental, social,
educational, recreational, and relational needs
be considered. The developmental stage of the
family must also be considered, regardless of the
patient’s age.
Palliative care in adults developed primarily
around care for patients with cancer. The current
trend in palliative care, however, is an expanded
focus on life-threatening illnesses beyond cancer.
Patients and their families have similar needs for
information, care, and support in a wide variety of
chronic illnesses, including heart disease (Barnes
et al., 2006), muscular dystrophy (Dawson &
Kristjanson, 2003), motor neuron disease (Dawson
& Kristjanson, 2003; Hughes, Sinha, Higginson,
Down, & Leigh, 2005), dementia (Caron, Griffith,
& Arcand, 2005), Parkinson’s disease (Goy, Carter,
& Ganzini, 2007), and neurodegenerative diseases
(Kristjanson, Aoun, & Oldham, 2006), as well as
when patients are simply of an advanced age
(Forbes-Thompson & Gessert, 2005).
278 Families Across the Health Continuum
3921_Ch10_277-320 05/06/14 11:08 AM Page 278
Palliative care is about nurturing and maintain-
ing quality of life from diagnosis of life-limiting
illness through bereavement. The approach en-
compassed by palliative care principles can be used
in any setting with any family, regardless of how
long a person has to live or how sudden the death
is. Murray and Sheikh (2008) described three main
trajectories of decline at the end of life. Awareness
of these trajectories (Fig. 10-1) helps nurses rec-
ognize when palliative care may best be intro-
duced. Palliative care can be offered alongside care
that is curative in intent (Murray, Kendall, Boyd,
& Sheikh, 2005). But at some point in the illness
trajectory, the primary goal of care shifts from cur-
ative to palliative intent. This point often occurs
when there are no available curative treatments, or
treatments are no longer effective or are associated
with burden that is no longer tolerable to the pa-
tient. It is well recognized that communication
about the transition of care from curative to pal-
liative intent is difficult but crucial (Marsella,
2009). It requires discussion about shifting the
focus to quality of life rather than quantity of life.
When a sudden or traumatic event occurs, there is
little time to hold such discussions. But when
someone has a protracted illness, this discussion
can be introduced gradually and can be repeated
over time.
Unfortunately, in many clinical settings, pallia-
tive care is raised only in the last few days or weeks
of life, even when death has been anticipated.
The introduction of palliative care is particularly
challenging for health care providers when patients
suffer from illnesses that are difficult to prognosti-
cate, such as advanced lung, heart, and liver disease
(Fox et al., 1999). Nevertheless, it is important to
ensure that patients, family members, and health
care providers are aligned in their goals for care
(Thompson, McClement, & Daeninck, 2006) and
have a common understanding of what quality of
life means for the patient and family. Goals of care
and the meaning of quality of life will be unique in
each situation and care should be tailored to the
needs of each particular family (Heyland, Dodek,
et al., 2006).
Death occurs in many settings, from various
causes, and across the life span. Some differences
can be expected in families’ experiences depending
on the context, for example:
■ Where the death takes place (e.g., home
versus intensive care unit)
■ The cause of death (e.g., natural progression
of a chronic illness versus an unexpected,
acute event)
■ The dying trajectory (e.g., over a period of
years versus sudden)
■ The age of the family member who is dying
(e.g., a 3-year-old child versus an 85-year-old
person)
■ The cultural and spiritual backgrounds of
families (e.g., white versus Chinese; religious
faith versus no faith)
No matter the context, the principles of pallia-
tive care should be consistent, with implementation
tailored to address the particular family and the
family’s context. Consistent use of these principles
contributes to high-quality palliative and end-of-
life care. See Box 10-1 for some of the basic prin-
ciples of palliative care.
Identifying Relevant Literature
The amount of research about the provision of
palliative and end-of-life care to adults is growing.
Research in pediatric palliative care is much more
limited, but many of the reported issues for fami-
lies are similar across the life span. An electronic
search of the Cumulative Index to Nursing and
Allied Health Literature (CINAHL) database
from 2002 until summer 2012 uncovered more
than 2000 articles that reported on some aspect of
patient or family perceptions of the palliative,
Families in Palliative and End-of-Life Care 279
F
u
n
c
ti
o
n
Death
Number of Deaths in Each Trajectory,
Out of Average 20 Deaths Each Year Per
UK General Practice List of 2000 Patients
Cancer (n = 5)
Organ failure
(n = 6)
Physical and
cognitive frailty
(n = 7)
Other (n = 2)
High
Low
FIGURE 10-1 The three main trajectories of decline
at the end of life. (Reproduced from Murray, S. A., & Sheikh,
A. [2008]. Care for all at the end of life. British Medical Journal,
336[7650], 958–959, with permission from BMJ Publishing
Group Ltd.)
3921_Ch10_277-320 05/06/14 11:08 AM Page 279
end-of-life, or bereavement care provided to the
family by health professionals. Despite the num-
ber of articles in existence, only about a third pre-
sented research findings or a systematic review of
research findings and most of the research was
published in the last 4 years. Virtually all areas of
palliative care need more research to strengthen
the evidence base. The studies included explo-
ration of patient and family concerns and needs in
relation to different diseases (cancer being the
most common); causes of death (sudden deaths,
deaths after illness); care settings (long-term
care, acute hospital care, critical care, home, and
hospice); ages (pediatric to elderly patients); coun-
tries; and cultures.
Often, great variation existed in beliefs and needs
within a given cultural or other type of group, as
well as within individual families (Aspinal, Hughes,
Dunckley, & Addington Hall, 2006; Heyland,
Dodek, et al., 2006; Torke, Garas, Sexson, & Branch,
2005). Therefore, one cannot determine from the lit-
erature what the exact needs of, for example, family
members of an elderly African American person liv-
ing with Alzheimer’s disease in a long-term care set-
ting will be. But the literature does highlight the key
considerations in providing palliative and end-of-life
care, important areas to assess for any family facing
life-limiting illness, and interventions that may be
helpful for many families or that can be adjusted to
fit with a particular family’s assessed needs. The lit-
erature found through this search, plus seminal arti-
cles, forms the evidence base for the remainder of
this chapter.
KEY CONSIDERATIONS IN PALLIATIVE
AND END-OF-LIFE CARE
In order to provide optimal palliative and end-of-
life care, there are key areas that must be consid-
ered, such as the following: nurses’ own personal
assumptions and biases about death and dying; your
personal assumptions about people and their back-
grounds; the involvement of the family in all aspects
of care; the involvement of the interprofessional
team; the inclusion of bereavement care as part of
palliative care; and potential barriers to optimal pal-
liative and end-of-life nursing care.
Personal Assumptions and Biases
About Death and Dying
To provide optimal palliative and end-of-life care,
nurses need to be aware of their own assumptions
and biases about death and dying. As a nurse, it is im-
portant to explore your own beliefs, attitudes, and
personal and professional experiences to understand
how they may influence your attitudes toward death,
dying, and bereavement. For example, if you believe
that a family member should be physically present
with someone who is dying, you may find it difficult
to work with family members who choose not to be
present. It is neither possible nor wise to separate the
“nurse as person” from the “nurse as professional,”
because if your personal reactions are ignored, you
are less able to focus on meeting the needs of patients
and their families (Davies & Oberle, 1990).
Many nurses do not know how to deal with dying
and death. They are afraid, nervous, or anxious when
faced with a dying patient and grieving family. But
some nurses experience great satisfaction when
working with dying patients. They have developed
their palliative knowledge and skills, not simply
through caring for many dying patients, but through
reflecting on their experiences with those patients
and in their personal lives, on the meaning of life and
death, and on their own behavior. They are able,
therefore, to provide competent physical care and
also to be a welcome presence to those who are dying
and their family members. All nurses, from novice to
expert, need to develop basic competencies in the
area of death and dying, from how to provide effec-
tive symptom management, using both pharmaco-
logical and nonpharmacological therapies, to being
comfortable enough with death and dying that they
can be present for family members. See Box 10-2 for
280 Families Across the Health Continuum
BOX 10-1
Palliative Care Principles
■ Palliative care begins as soon as there is a diagnosis
of life-limiting illness.
■ Palliative care can occur concurrently with care that is
curative in intent.
■ The focus of palliative care is on supporting and en-
hancing quality of life.
■ Patient and family are cared for as a unit.
■ Attention is paid to physical, developmental, psycho-
logical, social, and spiritual needs and concerns.
■ Education and support of patient and family are
crucial.
■ An interprofessional approach is required.
■ Care extends across settings.
■ Bereavement support is part of good palliative care.
3921_Ch10_277-320 05/06/14 11:08 AM Page 280
Families in Palliative and End-of-Life Care 281
some key areas of focus when seeking education
about palliative and end-of-life care.
As a novice nurse, you can develop these compe-
tencies by building on your own strengths and learn-
ing ways to become more comfortable with death
and dying. It is often helpful to begin with your own
experiences around loss, death, and dying. Reflecting
on your beliefs about life and death will help clarify
your understanding of and appreciation for the
human condition—the only thing certain in life is
that everyone will die. This reflection will form the
foundation for the inner strength that will enable you
to provide optimal palliative and end-of-life care
(Davies & Oberle, 1990). You may want to further
your education on death, dying, and providing care
at life’s end through one of the many available re-
sources, such as workshops, books, and conferences;
best practice guidelines (Registered Nurses’ Associ-
ation of Ontario, 2011); or even popular movies (e.g.,
Life as a House; One True Thing). Gaining knowledge
through formal education can help improve your
comfort with providing care to patients facing a life-
threatening illness and their families (Kwak, Salmon,
Acquaviva, Brandt, & Egan, 2007).
Personal Assumptions and Biases
About People and Their Backgrounds
An underlying principle in palliative care is respect
for persons. As a nurse, it is helpful to be aware of
the assumptions and stereotypes that you hold about
the people you care for because assumptions and
stereotypes get in the way of person- and family-
centered care. Part of good palliative and end-of-life
care is recognizing that each and every person is
valuable in their own right; however, this is some-
times negatively influenced by judgments about a
particular person’s or family’s worth. Valuing appre-
ciates the possibility that every human being has the
potential for actualization or optimal development
(Davies & Oberle, 1990; Widger, Steele, Oberle, &
Davies, 2009).
Sometimes, assumptions and biases about people
relate to their cultural or spiritual background. Sim-
ilar to exploring your assumptions and biases about
death and dying, it is important to recognize your
own cultural or spiritual background or previous ex-
periences with other cultures and how they might
influence your practice, as well as your expectations
of others (Huang, Yates, & Prior, 2009). For exam-
ple, if you do not understand the importance of an
Aboriginal smudging ceremony to a family, you
may be unwilling to create an environment that al-
lows for such a ceremony within a hospital setting.
The cultural and spiritual implications discussed
elsewhere in this text also are relevant to quality
palliative care. Effectively implementing the pallia-
tive care philosophy means that you must be sensi-
tive to diversity and able to deal with issues that
arise when caring for people with varied cultural
and spiritual backgrounds (Davies & Oberle, 1990).
Cultural beliefs, as well as spirituality, spiritual
BOX 10-2
Key Areas of Focus for Education in Palliative and End-of-Life Care
The Registered Nurses’ Association of Ontario (2011) rec-
ommends that entry to practice nursing programs and
post-registration education should incorporate specialized
end-of-life care content that includes the following areas:
■ Dying as a normal process, including the social and cul-
tural context of death and dying, dying trajectories, and
signs of impending death
■ Care of the family (including caregiver)
■ Grief, bereavement, and mourning
■ Principles and models of palliative care
■ Assessment and management of pain and other symp-
toms (including pharmacological and nonpharmacologi-
cal approaches)
■ Suffering and spiritual/existential issues and care
■ Decision making and advance care planning
■ Ethical issues
■ Effective and compassionate communication
■ Advocacy and therapeutic relationship-building
■ Interprofessional practice and competencies
■ Self-care for nurses, including coping strategies and self-
exploration of death and dying
■ End-of-life issues in mental health, homelessness, and
the incarcerated
■ The roles of grief and bereavement educators, clergy,
spiritual leaders, and funeral directors
■ Knowledge of relevant legislation
Source: Registered Nurses’ Association of Ontario. (2011). Best practice guidelines: End-of-life care during the last
days and hours. Toronto, ON: Author. Retrieved from http://rnao.ca/sites/rnao-ca/files/End-of-Life_Care_During_
the_Last_Days_and_Hours_0
3921_Ch10_277-320 05/06/14 11:08 AM Page 281
beliefs, or faith, may be important in how some pa-
tients and families cope with illness (Aspinal et al.,
2006; Donovan, Williams, Stajduhar, Brazil, &
Marshall, 2011; Ferrell, Ervin, Smith, Marek, &
Melancon, 2002; Knapp et al., 2011; Perreault,
Fothergill Bourbonnais, & Fiset, 2004; Robinson,
Thiel, Backus, & Meyer, 2006; Sharman, Meert, &
Sarnaik, 2005; Torke et al., 2005). Some may find
strength and renewed connection to their cultural
or spiritual background, whereas others may ques-
tion previously held beliefs. It is very important that
you do not impose your own beliefs on the patient
and family; you need to determine what is most im-
portant to them. Although across cultures different
needs may exist, there is likely more similarity than
differences among cultures in terms of basic human
needs for connections with others, physical care,
dignity, and support (Kongsuwan, Chaipetch, &
Matchim, 2012). On the other hand, it is important
to remember that there may be a great deal of di-
versity within cultures or faiths. This means there
will never be a single approach that is appropriate
for all people from a particular culture or faith
group, so one of the best strategies is to ask families
about their beliefs and preferred way of doing
things (Kleinman & Benson, 2006). From this place
of understanding, nurses can negotiate care so that
it aligns as closely as possible with the family’s val-
ues and beliefs and demonstrates a fundamental
respect for people.
Involvement of the Family
Life-threatening illness is often referred to by fam-
ily members as “our” illness (Ferrell et al., 2002).
When the ill person is having a “good” day, so is
the family caregiver (Stajduhar, Martin, Barwich,
& Fyles, 2008). If the ill person is in emotional
or physical pain or has difficulty coping with the
illness, the caregiver’s suffering dramatically in-
creases as well (Brajtman, 2005; Milberg & Strang,
2011; Sharman et al., 2005). Siblings too may suffer
if parents are too focused on the ill child to meet
sibling needs (de Cinque et al., 2006; Horsley &
Patterson, 2006). Therefore, interventions directed
at one family member can also be supportive to
other family members, and this is the case whether
the ill person is a child or an adult. Family members
feel supported when they believe that professionals
have the best interests of their loved one at heart.
As a result, nurses need to ensure that the patient
is well cared for, but also keep in mind that inter-
ventions directed at family members as a group
and individually have been found to be most effec-
tive in supporting families and achieving the best
outcomes (Northouse, Katapodi, Song, Zhang, &
Mood, 2010).
Among the top concerns of dying patients is the
well-being of their family members in terms of
caregiving burden and their ability to cope after the
death (Aspinal et al., 2006; Fitzsimons et al., 2007;
Jo, Brazil, Lohfeld, & Willison, 2007; Kristjanson,
Aoun, & Yates, 2006; Kuhl, 2002; Perreault et al.,
2004). Even ill children may make decisions based
on what they believe is best for their family rather
than what they particularly want (Hinds et al.,
2005). Patients do not want to become a burden to
their families (Fitzsimons et al., 2007; Heyland,
Dodek, et al., 2006; Heyland et al., 2005). If pa-
tients know that their family is well supported, it
may reduce their own suffering.
Family members provide the majority of care for
persons with life-threatening illness, and a home
death relies on their strong involvement (Grande
et al., 2009; Stajduhar, Funk, Jakobsson, & Ohlen,
2010; Stajduhar, Funk, Toye, et al., 2010). Family
members carry many burdens when a family mem-
ber is dying, including ill health (e.g., depression,
back pain, shingles, difficulty sleeping, and preex-
isting chronic illnesses), conflicting family respon-
sibilities (e.g., caring for the ill parent or spouse plus
their own children), little time to meet their own
needs, cumulative losses, fear, anxiety, insecurity,
financial concerns, loss of physical closeness with
a spouse, and lack of support from other family
members and health professionals (Corà, Partinico,
Munafò, & Palomba, 2012; Ferrell et al., 2002;
Funk et al., 2010; Grande et al., 2009; Jo et al.,
2007; Kenny, Hall, Zapart, & Davis, 2010; Osse,
Vernooij, Dassen, Schade, & Grol, 2006; Perreault
et al., 2004; Proot et al., 2003; Riley & Fenton,
2007; Robinson, Pesut, & Bottorff, 2012; Sherwood,
Given, Doorenbos, & Given, 2004; Wollin, Yates,
& Kristjanson, 2006).
Moreover, the work of caregiving can be both
physically and mentally exhausting (Riley & Fenton,
2007; Robinson et al., 2012; Sherwood et al., 2004).
There also may be an ambivalent sense of waiting for
the person to die but not wanting the person to die
(Riley & Fenton, 2007). Family members may expe-
rience these issues whether their relative is mostly at
home (Andershed, 2006) or in an institutional setting
282 Families Across the Health Continuum
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(Abma, 2005). They often have increased responsi-
bilities and may view the situation as burdensome
(Andershed, 2006). Yet, family caregivers often are
more concerned about the care of the dying person
than about their own health (Robinson et al.,
2012), so as not to burden the patient or take focus
off the patient (Fridriksdottir, Sigurdardottir, &
Gunnarsdottir, 2006; Grande et al., 2009; Konrad,
2008; Perreault et al., 2004; Proot et al., 2003;
Riley & Fenton, 2007). A recent study found that
one of the most effective ways of supporting family
caregivers is to help them fulfill their caregiving
role rather than focus on their personal needs
(Robinson et al., 2012).
Although patients may want to remain at home,
family members often have to assume extra respon-
sibilities, such as administering medications, which
can lead to a great deal of anxiety (Kazanowski,
2005). Further, when patients choose to receive care
or die at home—perhaps to increase their quality
of life through greater normalcy; increased con-
tact with family, friends, and pets; and the familiar,
comfortable surroundings (Hansson, Kjaergaard,
Schmiegelow, & Hallström, 2012)—this location
may not be the caregiver’s first choice. For some
families, a home death brings additional burdens,
worry, and responsibility, and the home becomes
more like an institution (Brazil, Howell, Bedard,
Krueger, & Heidebrecht, 2005; Funk et al., 2010).
Decisions related to care location must be made
with family members because the course chosen has
a profound impact on the well-being of both the
patient and the family (Stajduhar, 2003; Tang, Liu,
Lai, & McCorkle, 2005). Recognize too, however,
that family caregivers often cannot express their
preferences if they differ from those of the ill person
and may need assistance from a nurse to navigate
the competing demands and priorities (Robinson
et al., 2012).
Family members may not be available or able to
give care at home. Patients and family members
may perceive that hospitals or hospices are able to
provide a higher quality of end-of-life care than can
be given at home, or the patient and family may
feel a close connection to the health care providers
in the institution (Tang et al., 2005). Some family
members may experience profound guilt if they are
not able to provide end-of-life care at home.
Health care professionals can alleviate some of this
guilt if they alert patients and families early on that
plans for location of care may need to change as
time goes on to ensure provision of the best possi-
ble care (Stajduhar, 2003).
Family caregivers may be vulnerable to burnout
if they are not able to cope with the caregiving re-
quirements (Proot et al., 2003). The burden may be
increased by the physical and emotional demands
of the patient; reduced opportunities for the care-
giver to participate in usual activities; and feelings
of fear, insecurity, and loneliness (Proot et al.,
2003). Caregiver strain also may increase when pa-
tients need more assistance with activities of daily
living or have greater levels of psychological and ex-
istential distress. Differences may exist in needs
based on age and sex, with younger caregivers hav-
ing more concerns about finances and maintaining
social activities and relationships. Female caregivers
may have more difficulties with their own health
(lack of sleep and muscle pain), with transportation,
coordinating care, and feeling underappreciated
(Osse et al., 2006). When a child dies, from any
cause, mothers in particular have a greater risk for
psychiatric hospitalization and death from suicide
or accidents shortly after their child’s death, com-
pared with those who have not experienced a child’s
death (Li, Laursen, Precht, Olsen, & Mortensen,
2005; Li, Precht, Mortensen, & Olsen, 2003). Be-
reaved mothers also have a greater risk for death
from cancer and cardiovascular disease long after
their child has died (Li, Johansen, Hansen, & Olsen,
2002; Li et al., 2003, 2005).
On the other hand, some people report positive
aspects of caregiving, such as feelings of satisfac-
tion, greater appreciation for life, greater purpose
and meaning to life, increased closeness and inti-
macy, newfound personal strength and ability, and
the opportunity to share special time together and
show their love for their family member (Andershed,
2006; Ferrell et al., 2002; Grande et al., 2009;
Hudson, 2006; Jo et al., 2007; Riley & Fenton, 2007;
Sherwood et al., 2004; Steele 2005a, 2005b; Steele &
Davies, 2006). Some family members may view care
provision as an opportunity and a privilege (Hudson,
2006; Jo et al., 2007; Kazanowski, 2005; Sherwood
et al., 2004). Hudson (2006) suggested a link between
the caregiver’s ability to see the positives in the situ-
ation and both better coping and less traumatic grief.
It is important, therefore, to help families uncover
the positive aspects and help families recognize the
value in what they are doing because it may con-
tribute to their overall well-being and may enhance
their experience. Further, when high-quality care and
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optimal family support are provided, research indi-
cates that adult family members who care for another
adult family member live longer after the patient’s
death (Christakis & Iwashyna, 2003). Similarly, some
researchers have found links between parents’ satis-
faction with care, or assessment of care quality, and
their coping ability or emotional state in the years
after the child’s death (Kreicbergs et al., 2005;
Rosenberg, Baker, Syrjala, & Wolfe, 2012; Surkan
et al., 2006). Nurses are in an excellent position to
identify and foster a family’s strengths, as well as to
identify, prevent, and alleviate many of the negative
aspects of caregiving. Through provision of optimal
palliative and end-of-life care, nurses can have a sig-
nificant, lifelong effect on the well-being of family
members.
Involvement of the
Interprofessional Team
Although the focus of this chapter is on the role of
the nurse, provision of care through an interprofes-
sional team approach is one of the principles of pal-
liative care. The composition of the team may look
quite different depending on the care setting. For
example, in a rural setting, the team may be com-
prised of a family physician and a nurse, whereas in
a large urban setting there may be a team of pallia-
tive specialists including palliative physicians, ad-
vanced practice nurses, psychologists, spiritual care
advisors, pharmacists, social workers, and volunteers.
In all settings, nurses are core team members. The
interprofessional team approach focuses on health
professionals collaboratively working with each
other and with a patient/family as members of the
team to develop and achieve common goals (Oliver,
Porock, Demiris, & Courtney, 2005). Despite shar-
ing common goals, each team member will bring
different ideas and skills to the team, which is both
the strength and the challenge of the interprofes-
sional approach. Multiple perspectives contribute to
holistic care and the ability to meet the multiple
complex patient and family needs that arise in pal-
liative care. The challenge is how to make best use
of each person’s contributions while negotiating dif-
ferences in perspective and respectfully managing
tensions around professional boundaries and expert-
ise. Palliative care is known for blurring of team
member roles in order to meet the current needs of
the patient and family members.
An interprofessional model of care is different
from a multiprofessional model. In health care
settings, traditional roles and expectations among
the professions involved in providing care can
raise barriers to integrated and effective teams.
Traditional medical services have been based on
a multiprofessional model that has tended to hinder
the development of an effective team because a
multiprofessional team is composed of individuals
from different professional backgrounds who
work with the same patient and family, but who
may develop individual goals and work relatively
independently. In contrast, the interprofessional
team approach focuses on collaboratively working
with a patient/family to develop and achieve com-
mon goals. See Box 10-3 for a summary of the
284 Families Across the Health Continuum
BOX 10-3
Interprofessional Versus Multiprofessional Teams
Multiprofessional Team
■ Medical treatment model
■ Fragmented approach to care
■ Centralized control
■ Autocratic team leader
■ Decision making by team leader
■ Vertical communication between professionals
■ Treatment geared toward intraprofessional goals
■ Separate goals among professionals
■ Professional goals are basis of plan
■ Families are peripheral
■ Meetings/rounds involve individual professional
reporting
Interprofessional Team
■ Holistic, “patient-centered” approach to care
■ Group control
■ Facilitative team leader
■ Decision making by consensus
■ Leadership by team members
■ Horizontal communication between professionals
■ Treatment geared toward interprofessional goals
■ Common goals among professionals
■ Patient goals are basis of care plan
■ Families are integral
■ Meetings/rounds involve group problem solving and
decision making
3921_Ch10_277-320 05/06/14 11:08 AM Page 284
differences between the interprofessional and
multiprofessional approaches.
For nurses, being an effective member of an in-
terprofessional team often means that they share
information and consult with others on the team,
mediate on behalf of patients and families when
necessary, and act as a liaison between various
members, institutions, and programs. As a novice
nurse, one of the key things you can do is to learn
and understand the patient’s and family members’
hopes, preferences, beliefs, fears, and goals and to
share this understanding with the team. Knowledge
about group dynamics is invaluable in learning how
to become a successful team member. Everyone
needs to know and accept that each member of the
team is unique and valuable, and good communi-
cation skills are crucial so that supportive rather
than defensive communication can be fostered. A
lack of communication among health professionals
is common and frustrating for families because they
then receive conflicting information or need to
repeat information and relay decisions that have been
made already (Antle, Barrera, Beaune, D’Agostino,
& Good, 2005; Hammes, Klevan, Kempf, &
Williams, 2005; Hudson, 2006; Macdonald et al.,
2005; Perreault et al., 2004; Widger & Picot, 2008;
Wiegand, 2006).
Bereavement Care
One of the principles of palliative care is that care
continues after the death and into bereavement.
The need for follow-up with the family after the
death by involved health professionals is considered
by many families to be a crucial component of end-
of-life care, but unfortunately one that is often miss-
ing (Cherlin, Schulman Green, McCorkle, Johnson
Hurzeler, & Bradley, 2004; D’Agostino, Berlin-
Romalis, Jovcevska, & Barrera, 2008; de Jong-Berg
& Kane, 2006; Kreicbergs et al., 2005; Macdonald
et al., 2005; Meyer, Ritholz, Burns, & Truog, 2006;
Widger & Picot, 2008; Wisten & Zingmark, 2007;
Woodgate, 2006). Families sometimes feel aban-
doned after the death, which adds to the grief they
experience (D’Agostino et al., 2008; de Cinque et al.,
2006; Heller & Solomon, 2005; Meert et al., 2007;
Widger & Picot, 2008). Bereavement care is im-
portant because family caregivers may experience
negative effects, such as feelings of loneliness, sad-
ness, and physical exhaustion caused by difficulty
sleeping, as well as the aftermath of the demands of
caregiving (Funk et al., 2010). These feelings may
be juxtaposed with feelings of relief that the pa-
tient’s suffering has ended and that everything pos-
sible was done to keep the patient comfortable
(Hudson, 2006; Sherwood et al., 2004; Wollin
et al., 2006). After the death, some caregivers may feel
“lost” because they now have “free” hours that were
previously devoted to caregiving (Sherwood et al.,
2004). Support for families after the death may help
prevent or alleviate prolonged suffering. Specific in-
terventions for bereavement care are highlighted
later in the chapter and in the second case study.
Barriers to Optimal Palliative
and End-of-Life Nursing Care
A major barrier to optimal palliative and end-of-
life care for patients and their families arises from
the limited formal education and training nurses
receive (Espinosa, Young, & Walsh, 2008). Al-
though some improvements have been made, his-
torically little attention has been given to palliative
and end-of-life care in nursing and other health
care professionals’ curricula. In particular, health
professionals report being unprepared to treat pain
and symptoms effectively, emotionally support the
dying person and his or her family, or deal with the
ethical issues that may be present at end of life
(Contro, Larson, Scofield, Sourkes, & Cohen, 2004;
Davies et al., 2008; Feudtner et al., 2007).
Another barrier is the availability and usage of
palliative services. Specialist palliative care services
may not be available in all care settings, particularly
at home or in more rural and remote areas, to pro-
vide support to practicing health professionals in
addressing learning needs or providing care to pa-
tients and families. Even when appropriate hospice
and palliative care services are available, a lack of
understanding of palliative care on the part of
health professionals can lead to delayed, or even a
lack of, referral to these services.
Involvement of the patient and family members
in the interprofessional team is a critical component
of palliative care, yet barriers may exist that limit
this involvement. In many cases, the program setup
and lines of communication do not allow for fami-
lies to be included to the extent they could and
should be, nor do they allow for provision of be-
reavement care by the health professionals who pro-
vided care before the death. Although work needs
to be done to remove the identified barriers, it is
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possible for nurses to practice high standards within
constraining contexts. It is important to seek out
opportunities to improve your knowledge and skills
in palliative and end-of-life care and to be an advo-
cate for the needs and views of patients and families
regardless of barriers that may present themselves.
A different type of barrier that can be even more
challenging to manage is the moral distress that can
arise for nurses when they provide end-of-life care
to patients and their families (Elpern, Covert, &
Kleinpell, 2005; Espinosa et al., 2008). Moral dis-
tress occurs when a person is powerless to carry out
an action that he believes to be ethically appropri-
ate. Some situations common to the provision of
palliative care that may cause moral distress include
the following:
■ Patients receiving medical treatments that
are believed to be inappropriate and/or con-
tributing to patients’ suffering (e.g., a ventila-
tor, providing artificial nutrition and
hydration via a gastrostomy tube)
■ Inadequate management of pain or other
symptoms
■ Lack of communication with family members
about prognosis
■ Provision of false hope to family members
(Epstein & Degado, 2010)
Moral distress can affect nurses’ job satisfaction,
physical and psychological well-being, self-image,
spirituality, and decisions about their own health.
Such distress may lead to burnout and leaving the
work environment (Elpern et al., 2005).
FAMILY NURSING PRACTICE
ASSESSMENT AND INTERVENTION
Nurses must possess strong patient and family as-
sessment skills if they are going to provide optimal
care (e.g., excellent pain and symptom manage-
ment, psychosocial support), because the most
appropriate interventions can be designed and im-
plemented only once a family’s needs and goals
have been assessed accurately. Your assessment
will help you determine what a specific family or
family member needs, and you can then tailor your
approach and the interventions you offer in con-
sultation with the family. Assessment and interven-
tion are, therefore, intertwined and are discussed
together in the following sections.
Keep in mind that assessment should be ongoing
and sequential, building on what is known about the
family and shaping interventions to meet the fam-
ily’s changing needs and preferences throughout the
palliative and end-of-life process. This section is or-
ganized around interventions that may be helpful to
families. Unfortunately, definitive research with
high-quality designs to identify the best interven-
tions for promoting optimal long-term outcomes
for family members is lacking (Grande et al., 2009;
Harding, List, Epiphaniou, & Jones 2012; Hudson,
Remedios, & Thomas, 2010; Rosenberg et al.,
2012; Stajduhar, Funk, Toye, et al., 2010). The
interventions discussed are informed by existing re-
search evidence and have been used successfully in
the authors’ clinical practices. The most important
thing to remember is that each family is unique. Al-
though your practice should be evidence informed,
do not try to apply theory and research uncritically.
What works for one family or family member may
not be right for another. You must not lose sight of
the need to assess and critically analyze each situa-
tion on its own merits, and actively involve the fam-
ily in the process. Because we can never know
whether an intervention will be useful to a particular
family, interventions should always be offered ten-
tatively and then evaluated from the family perspec-
tive. An intervention is only helpful if a family or
family member experiences it as helpful.
It is not possible to cover every potential sce-
nario in palliative and end-of-life care; therefore,
the focus is on discussing the main assessment and
intervention concepts that are needed for palliative
and end-of-life care. Most deaths you will en-
counter when providing end-of-life care occur as
the result of chronic disease rather than an acute
event. Therefore, these situations are the focus of
the remaining discussion and the case studies.
Connections Between Families
and Nurses
The relationships that families develop with health
care professionals have a significant effect on how
families manage palliative and end-of-life events
(Robinson, 1996). In your nursing education, you
may have learned about the characteristics of a
helping or therapeutic relationship, but in practice,
nurses often speak of their “connections” with fam-
ilies rather than their “relationships.” Making a
connection with family members helps uncover
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what is meaningful to them and builds a bridge
between you as human beings.
Understanding the family’s situation apart from
the illness is important (Benzein & Britt-Inger,
2008; Contro, Larson, Scofield, Sourkes, & Cohen,
2002, 2004; Maynard, Rennie, Shirtliffe, & Vickers,
2005; Steele, 2002; Steele & Davies, 2006; Surkan
et al., 2006; Tomlinson et al., 2006). Asking about
their previous experiences with death, any recent or
concurrent life changes (e.g., new job, new house,
new baby), or work and school responsibilities (e.g.,
self-employed, supportive work environment, near-
ing final examinations) may allow you to gain a
more in-depth perspective and appreciate the cre-
ativity and ingenuity of their efforts.
Connecting allows you to apply your general sci-
entific knowledge in ways that are more likely to be
successful for individual patients and their families,
given their specific background, needs, and ways of
being in the world. Connecting is a two-way process
where both the nurse and the patient/family mem-
bers get to know one another at a personal level and
begin to establish trust. With trust comes a greater
sense of comfort and ease for the family, and an in-
creased ability for nurses to offer effective interven-
tions and to act as advocates (Davies & Oberle,
1990; Robinson, 1996).
Communication and interpersonal skills can fa-
cilitate or hinder connecting with patients and fam-
ilies. Therefore, nurses need to be aware of how
their personal styles of interaction and communica-
tion can make, sustain, and break connections.
These connections need to be attended to and
nourished over time. Families typically are not used
to talking about death and dying (Andershed, 2006).
The presence of a mutual, trusting relationship is
foundational to palliative assessment and interven-
tion (Davies & Oberle, 1990; Robinson, 1996;
Widger et al., 2009) and is crucial in providing a
safe environment for difficult and emotional con-
versations to occur.
Nursing interventions that promote connections
and trusting relationships include the following:
careful listening to the family’s experience with
illness and suffering, asking good questions that
encourage family members’ understanding of the
differences in their perspectives, demonstrating
compassion by showing that you are touched by the
family’s suffering, remaining nonjudgmental, offer-
ing a new perspective or information through open
and honest communication, working with the family,
acknowledging family strengths, and being reliable
and accessible (Aspinal et al., 2006; Heyland, Dodek,
et al., 2006; Kristjanson, Aoun, & Oldham, 2006;
Mok, Chan, Chan, & Yeung, 2002; Robinson, 1996;
Shiozaki et al., 2005; Torke et al., 2005). It is impor-
tant to show families through your attitude and
behavior that you not only have the knowledge to
assist them, but that you are willing and able to do
so. The sense of security and trust a family experi-
ences in relationships with health care professionals
can add to and strengthen the family’s resources
(Andershed, 2006). Simple acts of addressing family
members by name, smiling, making eye contact,
showing emotion, and physical contact such as a
hand on the shoulder can foster connections be-
tween family members and the health professional
(Heller & Solomon, 2005; Macdonald et al., 2005;
Pector, 2004a; Sharman et al., 2005).
It is the nurse’s responsibility to take the lead in
developing a trusting relationship with families and
to provide an environment of openness where all
family members feel comfortable asking questions.
Completion of a brief family genogram is one effec-
tive way of learning family members’ names, rela-
tionships, and level of involvement in care, including
decision making. Getting to know each family mem-
ber demonstrates respect for the patient’s and family
members’ individuality, dignity, needs, concerns,
and fears (Aspinal et al., 2006; Dwyer, Nordenfelt,
& Ternestedt, 2008; Gordon et al., 2009; Hinds
et al., 2009; Kristjanson, Aoun, & Oldham, 2006;
Midson & Carter, 2010; Monterosso & Kristjanson,
2008; Riley & Fenton, 2007; Shiozaki et al., 2005).
Further, it enables recognition of differences within
the family. Box 10-4 provides some questions to help
you open up communication and learn about family
members’ perspectives as you build your connec-
tions with a family.
Making a connection does not necessarily hap-
pen instantly, nor does it have to take a lot of time;
however, it does require attention and cannot be
taken for granted. Sometimes you will feel a con-
nection easily exists between you and a family;
other times, you may need to make an extra effort
to get to know the family and to establish a rela-
tionship. You might feel as if you have to “prove”
your trustworthiness to the family or set aside your
own negative reaction to a particular family or fam-
ily member. Developing your reflective practice
and seeking the assistance of an experienced nurse
may be helpful.
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Unfortunately, all too often, families report a lack
of support and sense of connection that contributes
to negative experiences and dissatisfaction with care
(Andershed, 2006). Even single incidents related to
poor communication and interpersonal skills on the
part of health professionals can contribute to intense
emotional distress, such as anxiety, depression, and
guilt, long after the event (Contro et al., 2002, 2004;
Gordon et al., 2009; Meert et al., 2007; Pector,
2004a; Rini & Loriz, 2007; Surkan et al., 2006;
Widger & Picot, 2008). Understanding this leads
some nurses to worry about saying the wrong thing.
Listening carefully may assist you to know where to
start and sometimes there are no “good” words to
say, but simply being present and staying with the
family can be helpful.
Humor may be one way to facilitate a connec-
tion with families, but it is important first to assess
288 Families Across the Health Continuum
BOX 10-4
Key Questions to Ask Families to Open Up Communication and Obtain Family
Members’ Perspectives
Ideally, questions to open up communication and obtain
family members’ perspectives should be asked with all
involved family members present, including the patient.
Keep in mind, however, that family members may not
want to burden their ill member with their emotions and
concerns, so you may find that some of these questions
need to be asked of family members when they are
alone. You will need to finesse questioning depending
on where the ill family member is in the palliative care
experience.
Start by saying, “I’d like to understand what it has been
like for your family to live with [illness].” Then, use the fol-
lowing key questions to open up communication and ob-
tain family members’ perspectives. It is often helpful to
indicate that you expect different family members will
have different views about things. So you may need to
ask a question multiple times in order to have all family
members’ views.
■ What is your understanding of what is happening with
[ill family member]?
■ What experience do you have as a family in dealing with
serious health problems? With death and dying?
■ If you were to think ahead a bit, how do you see things
going in (the next few days, the next few weeks, the
next few months [use the timeframe that is most
appropriate])?
■ How are you hoping this will go?
■ What is most important for me to know about your
family?
■ What are you most concerned or worried about?
■ When you think about your loved one getting really sick,
what fears or worries do you have?
■ I’ve found that many families caring for someone with
this condition think about the possibility of their loved
one dying. They have questions about this. Do you have
questions?
■ Who is suffering most?
■ How do they show their suffering?
■ How are you managing?
■ I understand that different family members will have dif-
ferent talents or strengths: how do you most want to be
involved?
■ How can I be most helpful to you at this time?
■ How does your family like to talk about challenging
things?
■ How have you been talking about the situation you find
yourselves in? Who has been involved?
■ Is there anyone involved who is important and who
I haven’t met?
■ How are important decisions made in your family? How
would you like important decision making to go now?
■ Families often find it helpful to talk about the care they
want at end of life. Have you been able to have a con-
versation about this? I wonder if I might be able to help
you start this conversation.
■ Do you have any cultural beliefs, rituals, or traditions
around illness and end of life that I should be aware of?
■ What have you found most helpful or useful to you as a
family at this time?
■ What do you most need to manage well?
■ What has not been helpful?
■ What sustains you in challenging times?
■ What is going well?
■ What do you most want to be doing at this time? What
brings you joy (or helps you get out of bed in the
morning)?
■ If your loved one were to die tonight, is there anything
you have not said or done that you would regret? If so,
how can I help you do or say what you need to do?
(Ask this of the patient as well, i.e., If you were to die
suddenly, is there anything you would regret not doing
or saying?)
■ In families, often many things are happening apart
from the illness that we do not know about. Is there
anything going on that is adding to what you are already
coping with?
3921_Ch10_277-320 05/06/14 11:08 AM Page 288
receptivity to humor (Dean & Gregory, 2005).
Generally, when families use humor, it is fine to
then enter into the humor with them, but it may
be more difficult for the nurse to initiate humor.
The use of humor can provide respite from think-
ing about the illness, relieve tension, and demon-
strate respect for the patient and family members
as people if it fits with their way of being. Some
strategies that nurses can use to make a connection
between themselves and patients and families are
provided in Box 10-5.
Relieving the Patient’s Suffering
What do dying people want? They want adequate
pain and symptom control, to avoid inappropriate
prolongation of dying, to achieve a sense of control,
to relieve burdens for their loved ones, and to
Families in Palliative and End-of-Life Care 289
BOX 10-5
Establishing and Sustaining Connections With Families
■ Patients and families need to know who you are; when
you meet a patient and family for the first time, make
them feel welcome, introduce yourself by name, then
find out who they are and learn about them as people
as well. Ask them how they would like to be called
(e.g., by full name or first name). Ask them about their
relationship to one another (e.g., to find out whether
they are partners, sisters, friends). This is a good time
to begin a genogram, which can be supplemented
over time.
■ Begin any interaction by clarifying your role and telling
the patient and family about your “professional” self
so you establish your credentials. For example, “Hello,
Mr. Li. My name is Rose Steele. I’m a third-year stu-
dent nurse. Sandyha Singh, the Registered Nurse su-
pervising me, and I are taking care of your wife today.
I’m working until 3:30 p.m. today and also will be
here tomorrow, so I’ll be her nurse then too. I have
worked on this unit for the past three weeks, so I am
pretty familiar with all the routines, but I’m really inter-
ested in finding out how we can fit in with what you
and Mrs. Li want.”
■ The best approach is not “This is how we do it here,”
but rather “How do you like to do this?” and “How can
we find a way to do that in this context?” Sometimes we
cannot do it exactly the way the patient and/or family
would like, so then we need to ask about what the
most important pieces are so that we can come as
close as possible to the desired result.
■ Ensure a comfortable physical environment; let patients
and families know the routines and how they can get
help as needed, to provide a sense of familiarity and
help you begin to make the connection.
■ Privacy is often an issue and it is critical to some of the
sensitive discussions that occur in palliative and end-of-
life care. Try to find a private location before broaching
sensitive issues.
■ Describe who other team members are and what
their roles are so families understand the context.
Family members often do not know who to ask
for what.
■ Attend to the patient’s and family’s immediate state of
well-being; it is impossible to connect with someone
when you have not attended to their basic needs first.
If a patient is lying in a wet bed or is in pain, family
members will not be open to a “connecting” conversa-
tion with the nurse. When you demonstrate good as-
sessment and intervention skills that result in enhanced
comfort, your practice invites trust.
■ Be sensitive to an individual’s particular characteristics
such as cultural or gender differences; making eye con-
tact is a useful strategy for connecting in many cases,
but a First Nations person, for instance, may be uncom-
fortable with direct eye contact. Touch is often welcome
but is not universally experienced as supportive. You
may need to ask about what provides comfort to the
patient and family members.
■ Do not let your observations of particular characteristics
limit your perception by stereotyping the person; be
aware of your own assumptions and biases, guarding
against “operationalizing” your biases—for example, do
not assume that an elderly person is deaf.
■ Be sensitive to a person’s way of being. Some people
are outgoing and talkative; others are more withdrawn.
It is a good idea to check out your observations rather
than simply assuming that your interpretation of what
you are seeing is correct. For example, some people be-
come very quiet and stoic when in pain. This approach
may be their way of managing pain, and not their usual
“way of being.” Humor may be appropriate for some
people or situations, but not for others. Responding to
people in ways that match their style enhances their
comfort level. Another useful habit is to use the family’s
language. If you need to use medical terms, be sure to
Continued
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290 Families Across the Health Continuum
BOX 10-5
Establishing and Sustaining Connections With Families—cont’d
explain them. Sometimes family members use incorrect
words (e.g., prostrate instead of prostate). Generally, the
best way to handle it is to use the correct word in a
matter-of-fact way and say something like, “Oh yes, I
understand that the problem is prostate cancer.”
■ Not all people will want the same level of connection;
you need to respect where the person is coming from
and not try to force a deeper relationship. Families deal-
ing with prolonged, life-threatening illness often have
negative health care encounters that lead them to be
wary of new health care professionals and make them
careful in how much, and in whom, they trust. Some-
times it takes time and the repeated demonstration of
trustworthy behaviors before they are willing to begin to
trust a new health care professional.
■ Patients and families differ in their expectations of
what health care workers should provide; some only
want information, some expect only physical care, and
still others expect more of a supportive relationship.
The key here is in asking for expectations. This does
not mean that you can meet the expectations and you
may want to preface the request with a statement
such as, “To be most helpful to you, I need to know
what you would like. I may not be able to do things ex-
actly as you prefer, but we can work together to get as
close as possible.”
■ Many times you will find that when you simply meet the
patient’s and family’s expectations without imposing
your own, further opportunities for connecting may
evolve.
■ Once the connection has been made, it is important
to pay attention to nurturing it so that it is sustained
over time.
■ Sustaining the connection allows you to learn even
more about the patient and family so you can continu-
ally adapt your care according to their needs; it is also a
way of demonstrating your trustworthiness by inviting
the patient and family to get to know and trust you.
When you are well connected, you are more likely to
offer useful interventions that the family will accept.
■ Ways of sustaining the connection include spending
time with the patient and family, asking good questions,
noticing what they are doing that is positive or helpful,
and being available. Sometimes the only thing we can
do is to stay with patients and families as a witness to
their suffering.
■ Making and sustaining the connection is a two-way
process that has to do with sharing parts of yourself
with patients and families as you seek a common bond.
This process may mean revealing some personal details
about your life and there are a few circumstances when
it is appropriate, for example, when the patient or family
ask you a direct question about yourself or when you
have had an experience that helps you understand what
the family may be experiencing. Revealing personal de-
tails can be helpful in inviting trust, but they should be
brief and should not take the focus away from the pa-
tient and family.
■ Continuity of care, such as having the same nurse be
in contact with the same patient over some period of
time, is important. It is critical that team members ef-
fectively communicate with one another to support
continuity of care.
■ It is not just the quantity but also the quality of time we
spend with a family that makes the difference. For ex-
ample, if you clear your mind before coming into the
room, come to the bedside and are calmly attentive to
the patient rather than doing multiple tasks while also
talking, the encounter will seem longer and be more
satisfying to the patient.
■ The “best” nurses are those who give the impression
of “having all the time in the world,” even when they
are really busy. One way of doing this is to come into
the room and sit or stand by the bedside, even if only
briefly.
■ Taking the time to “be there” for patients and families in-
stead of being in a rush maintains the connection. This
requires you to be mindful and to let go momentarily of
all the demands that compete for your attention.
■ Even when you are not actually with patients and fam-
ilies, it is important that they feel as if you will be
available when they need you; simple things such as
saying hello and good-bye at the beginning and end
of shifts, and also at break times, help them know
your availability. Let the patient and family know how
long you are available and when you will be back
(e.g., “I’m just popping in to see how your pain is and
won’t be able to stay long, but I’ll be back in about
half an hour and will be able to spend more time with
you then”).
■ Informing patients and families so they know what to
expect and keeping your word, such as being there
when you say you will be, also sustain the connection.
■ Instead of having your routine set for the day, adapt
your routine to what the patient and family need at
the time.
■ Be flexible because you are always working under con-
straints; share these constraints with patients and fami-
lies, and tell them if you need to change the plan you
have made with them.
■ Changing plans often requires the support of colleagues
who can take over for you or help out as needed.
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Families in Palliative and End-of-Life Care 291
strengthen relationships with loved ones (Singer,
Martin, & Kelner, 1999). Concern about becoming
a burden to their family may keep dying people
from talking to family members about their fears,
and about dying (Kuhl, 2002). You can see that
family figures prominently for dying people. At the
same time, family members are worried about
burdening the dying person. These worries, cou-
pled with health professionals’ avoidance of diffi-
cult discussions because of fear of disrupting hope
(Robinson, 2012), can create a conspiracy of silence
that contributes to a sense of isolation and alone-
ness for dying people and their loved ones. One of
the ways nurses can be helpful is to assess who is
talking to whom, who knows what, and what is
holding people back from having conversations
that nurture and strengthen the relationships that
are often deeply desired within the family. Suffer-
ing can be alleviated by inviting and assisting fam-
ilies to come closer together and to engage in
meaningful conversations.
This is not going to be possible, however, unless
the dying person is physically comfortable. Ade-
quate pain and symptom control is the first priority
of dying people. It is also the first priority for family
caregivers, who need to become skilled palliative
care providers (Robinson et al., 2012). Witnessing
the suffering of their dying family member when
there is uncontrolled pain and symptoms is trau-
matic for family members. Therefore, foundational
to good family palliative and end-of-life care is
knowledge and skills in pain and symptom manage-
ment. Nurses need to understand the variety of
symptoms common to patients at the end of life so
they can anticipate, prevent when possible, recog-
nize, assess, and effectively manage pain and symp-
toms with both traditional and complementary
therapies (see Chapter Web Sites later in this chapter
for resources). Key to this is regular, systematic as-
sessment using standardized assessment tools, such
as the Edmonton Symptom Assessment System
(ESAS; Cancer Care Ontario, 2005). Involving the
dying person, as much as possible, in planning and
treatment decisions supports the need for achieving
a sense of control as more and more of life moves
out of control.
Relieving suffering yields improved quality of life,
but no single definition exists for the most important
factors that contribute to a good quality of life
(Johansson, Axelsson, & Danielson, 2006; Norris
et al., 2007). This is because only the individual and
family know what constitutes quality of life for them.
Individual needs must be assessed. Norris and col-
leagues found higher patient quality of life ratings
associated with a variety of activities, such as playing
music that was meaningful to the patient, attending
a place of worship, having a familiar health care team
available at all times (for patients at home), and hav-
ing individual preferences respected. Predictably,
other components contributing to better quality of
life include valuing everyday things, maintaining a
positive attitude, having symptoms relieved, feeling
in control, and feeling connected to and needed
by family, friends, and health professionals (Aspinal
et al., 2006; Johansson et al., 2006).
Empowering Families
Family palliative and end-of-life care is a strengths-
based approach. It is about building and nurturing
family strengths to ensure that quality of life, as de-
fined by the family, can be achieved as closely as pos-
sible. Rather than solely focusing on deficits or areas
that the nurse perceives as problematic, palliative
care emphasizes empowering families to manage this
challenging time in their own unique way by notic-
ing and building on strengths, while at the same time
effectively addressing problems. All of the empow-
ering strategies require good communication skills.
The focus should be on maximizing the patient’s and
family’s capacity to use their own resources to meet
their needs and respecting their ability to do so.
Nurses empower patients and families by creating
an environment in which their strengths and abilities
are recognized, by encouraging them to consider
various options, by assisting them in fulfilling their
needs and desires through the provision of informa-
tion and resources, and by supporting their choices.
Several specific interventions that empower families
are commending families, educating families about
clinical options and constraints, and helping families
to help themselves.
Family members appreciate recognition for
their knowledge of the patient, their competencies,
and their caring. Nurses can facilitate this appre-
ciation by commending the work of the caregiver
in the presence of the ill person. Commending
families and family members is a very powerful in-
tervention (Houger, Limacher, & Wright, 2003;
Mok et al., 2002; Wright & Leahey, 2005), espe-
cially in the presence of the ill person. Caregivers
may be better able to cope with caregiving when
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292 Families Across the Health Continuum
the ill person recognizes and appreciates their role
(Hunstad & Svindseth, 2011; Stajduhar et al.,
2008). Effective commendations involve making
specific observations of patterns of family strengths
that occur across time (Wright & Leahey, 2005).
Similarly, parents appreciate recognition of their
parenting role and skills. Nurses’ commendations
may help to strengthen parents’ relationships with
their child and their view of their parental role
(Antle et al., 2005; Hinds et al., 2009; Steele,
2002).
Empowering also is about making patients and
families aware of options and constraints about
clinical care and available resources so they can
make choices that are most appropriate for them.
For example, families may be unaware of the
possibility of having death occur outside the hos-
pital, yet that may be a support for some families
(Pector, 2004b). Home death is often the pa-
tient’s desire and, typically, family caregivers are
deeply committed to doing whatever it takes to
honor this preference (Robinson et al., 2012).
Yet there is growing evidence that family care-
givers are unprepared to take on the job of pro-
viding care and they lack the necessary education
and support along the journey (Robinson et al.,
2012; Topf, Robinson, & Bottorff, 2013). Under
these circumstances, family caregivers can suffer
negative health consequences and are at risk for
complicated bereavement (Topf et al., 2013).
Engaging both the patient and involved family
members in discussion about preferences for
care, preferences for place of death, and available
resources may assist negotiation of decisions that
can be simply taken for granted when family
members automatically step forward to take up
the role of caregiver. Choice empowers families.
Strain on families may be reduced when families
are more accepting of the patient’s illness, feel
more capable in their ability to provide and man-
age the patient’s end-of-life care (Redinbaugh,
Baum, Tarbell, & Arnold, 2003), and feel better
able to attend to their own self-care needs and dif-
ficult emotions or interactions (Merluzzi, Philip,
Vachon, & Heitzmann, 2011). Nurses need to as-
sess families for their knowledge, skills, and con-
cerns, and then offer appropriate interventions.
Some interventions include providing information
about the illness, its treatment and prognosis;
teaching family members how to provide adequate
care to their loved one; and encouraging family
members to share their fears and other emotions,
and then providing the needed support (e.g., in
discussions, or referring to appropriate resources
such as a social worker who can arrange for respite
care). Facilitating hope for a longer life or for a
peaceful death and providing adequate informa-
tion and emotional and instrumental support also
may help reduce the burden (Hunstad & Svindseth,
2011; Proot et al., 2003).
Empowering patients and families may include
helping them to do what they themselves want
and need to do, rather than professionals taking
over and doing it for them. For example, although
it may appear quicker and easier for the nurse to
assist a patient out of bed, it may be important
that the patient moves by herself or that a family
member is taught to assist. Sometimes you will
need to be creative in finding ways to empower
patients and families. You might find that your
abilities are stretched as you try to accommodate
them, especially within the constraints of your
clinical setting, so do not be afraid to talk with
your clinical facilitator or other staff members
about your struggles. They can be great resources
for you. At the same time, you might have some
innovative ideas to share that they will find useful
in their practice.
It is important to assess the capacity of patients
and families to do for themselves, and then find
ways of supporting them when hopes and expec-
tations exceed capacity. Careful assessment of the
situation is central to knowing when to act on be-
half of patients and families, and when to encour-
age them to manage themselves, because if you
“do for” patients and families when they can care
for themselves, you may diminish their sense of
competency and disempower them. On the other
3921_Ch10_277-320 05/06/14 11:08 AM Page 292
hand, if you expect them to do everything on
their own, you may inadvertently leave them feel-
ing isolated and unsupported (Stajduhar, Funk,
Jakobsson, et al., 2010).
Providing Information
Families often have a need for information, but may
not know what questions to ask. A lack of knowl-
edge and feeling uninformed can leave people feel-
ing isolated, frustrated, and distressed (Andershed,
2006; Hunstad & Svindseth, 2011). Some families
want a great deal of detailed information, whereas
others feel overwhelmed and find that it interferes
with their ability to live as normal a life as possible.
Therefore, ongoing assessment of how much and
what types of information families want is impor-
tant (Maynard et al., 2005; Pector, 2004a; Steele,
2005a, 2005b). This assessment also needs to in-
clude how much information should be offered
directly to the patient, especially a child (Hays et al.,
2006; Hsiao, Evan, & Zeltzer, 2007; Mack et al.,
2005). A wide variation exists in the age at which
parents believe a child is old enough to be included
in illness discussions (Mack et al., 2005). Even when
the patient is an adult, some families may believe
that not all information should be shared with the
patient (Royak Schaler et al., 2006). These beliefs
may be based on cultural norms. As a nurse, you
need to be aware of your legal responsibilities and
ensure that you do not withhold information inap-
propriately. You also must convey your responsibil-
ities to the family and initiate an open dialogue
about the importance of communication. As alluded
to above, some families may hold a culturally based
belief that an adult patient should not be told a life-
limiting diagnosis. One way of approaching this is
to ask the patient whether she wants information
about her medical condition, and if not, who in the
family should be given information, and whether
this person should be considered her designate de-
cision maker.
As a beginning family nurse, what information
can you offer that may make a positive difference
for family caregivers? You are in one of the best po-
sitions to understand and appreciate what it is like
for family members to take up the job of caregiv-
ing. Most do not have a medical background and
so they do not know what will be asked of them.
They do not know how to provide basic care effec-
tively, such as toileting, assisting the ill person to
move without causing more pain, and managing
symptoms such as pain and breathlessness, or even
safely working with an oxygen tank. They need
knowledge and skills that they do not even know
they need until they are alone in the midst of pro-
viding care. Noticing what the ill family member
needs, anticipating future needs, listening to both
the ill person and the family caregiver, assisting
them to negotiate how care will be done at home,
working directly with the family caregiver to pro-
vide knowledge and model essential skills, and de-
termining available resources and gaps in services
are some examples of interventions that may prove
supportive. The key is listening carefully to both
the ill person and the family caregiver and bringing
your knowledge forward to support them in their
mutual goals. At the same time, it is important
to recognize and assist with strategies to maintain
“normal” roles within a family, such as parent
or spouse (Price, Jordan, Prior, & Parkes, 2011;
Stajduhar, Funk, Jakobsson, et al., 2010; Weidner
et al., 2011). Family caregivers have reported that
interventions aimed at separating them from their
dying family member, such as exhortations to leave
the bedside and get some sleep, are often not helpful
and can be experienced as disrespectful (Robinson
et al., 2012). Family caregivers may see these inter-
ventions as evidence that nurses really do not un-
derstand their commitment to the dying person
and to providing care. As previously mentioned,
one intervention that is very powerful is the offer-
ing of situation-specific commendations.
When patients and family members are empow-
ered with the amount and kind of information they
want, at the time they need it, the result is more ef-
fective partnerships with professionals. Nurses are in
a key position to act as a liaison between the profes-
sional team members and the family. Patients and
families should be encouraged to ask questions, and
these questions should be answered with full expla-
nations and support. There is some evidence that
family caregivers may be reluctant to reveal difficul-
ties providing care because they are afraid that care
will be taken away from them (Topf et al., 2013).
Therefore, nurses need to create an environment
that allows family members to speak openly and
without fear.
Beginning nurses are sometimes reluctant to in-
vite questions from families because an expectation
exists that you will have an answer. Simply knowing
the questions is valuable information, and many
Families in Palliative and End-of-Life Care 293
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times the questions do not have answers. As a
novice, you may not know the answer, and that is
all right. If possible, however, you can show your
trustworthiness by seeking the information and
providing it in a timely fashion.
Overall, families need to have honest and under-
standable information about a variety of areas, in-
cluding the following:
■ The patient’s condition
■ The illness trajectory
■ Prognosis (keeping in mind that prognosis is
inherently uncertain because we cannot pre-
dict when death will occur)
■ Symptoms to expect and treatment options
■ How to provide physical care
■ What to expect (including signs of impend-
ing death, which allows family members the
opportunity to say final good-byes)
■ Ways of coping (including helping families
become aware of possible strategies, such as
respite and mental pauses)
■ The dying process
■ How to access additional support
■ What aids (e.g., wheelchairs, beds, lifts) may
be helpful and where to get them
■ The care system in which this all occurs
Provision of this type of information is linked to
reduced caregiver burden, improved coping, self-
efficacy, and enhanced quality of life (Northouse
et al., 2010).
The way in which information is shared is as im-
portant as the content of the information. Critical
components of the process of sharing information
include timing, pacing, and both verbal and non-
verbal conveyance of respect, empathy, and com-
passion (Gutierrez, 2012; Kirk, Kirk, & Kristjanson,
2004). The timing and pacing, in particular, are im-
portant to allow families to absorb the reality of the
situation and to make informed decisions (Meert
et al., 2007). Do not rush families to make decisions,
and give information as early as possible to allow for
ongoing discussions and decision making with a
clearer mind rather than waiting for a crisis that
may be fraught with emotion (Hammes et al., 2005;
Macdonald, Liben, & Cohen, 2006; Sharman et al.,
2005). The use of simple, jargon-free language is
likely to be helpful. In emotionally intense situa-
tions, often little information is absorbed and it
must be repeated over time, so nurses should be
willing to clarify repeatedly for family members
without becoming impatient and ask questions of
all family members to ensure that information is
being understood. Nurses also need to attend to
their own and family members’ nonverbal language;
at least three-quarters of a message is conveyed
nonverbally. For instance, watch the person’s face
to determine if she looks confused, upset, or com-
prehending. Moreover, be aware of your own body
language; stand close to a family member rather
than standing in the doorway of a patient’s room so
you give the impression of having time to talk and
listen. Moderate your tone of voice so that you
sound respectful and empathetic rather than an-
noyed or without compassion.
Through learning about other families’ experi-
ences, patients and family members can better un-
derstand their own experience. Nurses can share
insights gained from other families both from
practice and research. For example, “Other fami-
lies have told me that talking about what their
child’s death might be like was one of the hardest
things they ever had to do, but once they knew
there was a plan in place for how to handle the
possible symptoms or issues that may happen,
they were able to stop worrying about all the
‘what-ifs’ and just focus on having the best time
possible with their child.” Having information en-
ables patients and family members to collaborate
with health care providers from an informed po-
sition and is required for making decisions and
planning for the future.
Balancing Hope and Preparation
A fair amount of ambiguity always exists when
working with families at end of life, regardless of
whether the situation is acute or chronic. Nurses
need to become comfortable with the inherent un-
certainty and help families live well within an un-
certain context. One common ambiguity surrounds
prognostic uncertainty. Given that we cannot pre-
dict when death will occur, families need to be en-
couraged to attend to what they view as important
and to take advantage of the moment. When a pa-
tient or family member asks, “How long?” you
might reply by asking, “What would you be doing
differently now if you knew that the time was very
short?” In response to their answer, you might sug-
gest that they do whatever “it” is, and if they get to
294 Families Across the Health Continuum
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do “it” again next week or next month or even next
year, then that would be a bonus.
As a patient’s condition changes and deterio-
rates, the hopes and expectations of the patient and
family may change as well. Hope often shifts from
a more global perspective—such as hope for a
cure—to a more focused or specific perspective,
such as a hope to live long enough to see her grand-
child who is due in a few months. Nurses can help
facilitate this change in hope by asking powerful
questions, such as, “If your loved one were to die
tonight, is there anything you have not said or done
that you would regret?” or “If you were to die sud-
denly, is there anything you would regret not doing
or saying?” Such questions encourage patients and
families to consider what is most meaningful to
them and allow them to shift their hope to areas
that may be more attainable. Nurses who partici-
pate in these discussions can help maintain hope
for some things while not providing false hope.
They also can offer to help patients and families do
or say what they need to do.
For some families and in some cultures, a need
is present to keep fighting for every chance at life,
hoping for a miracle, until the last possible mo-
ment, even when they may know this is considered
medically unrealistic (Kirk et al., 2004; Robinson,
2012; Shiozaki et al., 2005; Torke et al., 2005). As
a nurse, it is important to find the balance between
supporting families in their hopes and still being
comfortable talking about death and preparing the
patient and family for what is to come, including
advance care planning (Hsiao et al., 2007; Rini &
Loriz, 2007; Robinson, 2012; Robinson et al.,
2006; Shiozaki et al., 2005; Steele, 2005a). There-
fore, when preparing the family for what is to
come, the information must be provided in a sen-
sitive manner that acknowledges hope (Kirk et al.,
2004; Robinson, 2012; Shiozaki et al., 2005). One
way of doing this is to use a hypothetical question
(Wright & Leahey, 2005), such as, “If things don’t
go as we hope, what is most important for you to
have happen?” Another phrase that is sometimes
helpful is suggesting that a family “hope for the
best and plan for the worst.”
Parents of dying children identify a need to
balance hope and despair (Konrad, 2008; Moro
et al., 2011) and appreciate when health profes-
sionals support hope without offering false hopes
(Gordon et al., 2009; Monterosso & Kristjanson,
2008). Lack of discussions about the possibility of
death are closely linked to parents’ belief that
health professionals sometimes give false hope
that the child will survive the illness (Gordon
et al., 2009; Monterosso & Kristjanson, 2008).
False hope may be detrimental to parents’ ability
to prepare for the child’s death, so nurses need to
be mindful of what they say and how they say it.
Honest acknowledgment of the severity of the
situation is important.
Facilitating Choices
A major role for nurses is to be an advocate for pa-
tients and families and facilitate their choices. But
to do so, nurses need to know what the patient and
family want. One specific intervention is to encour-
age advance care planning so that everyone is clear
about the patient’s preferences regarding end-of-
life care. Other interventions include assessing the
extent of both the patient’s and family members’
desire for involvement in decision making, and
then respecting that desire; assessing their aware-
ness about the possibility of death, and opening
lines of communication; and identifying and then
building on the patient’s and family’s strengths in
order to optimize choices.
Advance Care Planning
At the end of life, patients may be unable to partici-
pate in making decisions about their care, leaving
family members to make decisions based on their
understanding of what the patient would want if he
were able to participate. One way in which families
can prevent misunderstandings and can promote fa-
cilitation of choices is by discussing wishes and de-
sires in advance. Advance care planning is a process
that involves reflection and communication. It is a
way of letting others know your future health and
personal care preferences, so that if you become
incapable of consenting to or refusing treatment,
others—especially your substitute decision
maker, the person who will speak for you when you
cannot—will make decisions for you that reflect
your values and wishes, regardless of their own de-
sires. Advance care planning often involves not only
discussions with family and friends, but also writing
down your wishes; it may even involve talking with
health care providers and financial and legal profes-
sionals. The Canadian Hospice Palliative Care
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Association (n.d.), in collaboration with the National
Advance Care Planning Task Group, provides a
number of valuable online resources about advance
care planning, including a workbook to guide writ-
ing the plan.
Less than 30% of adults have an advance direc-
tive, and even for those adults who do have them,
they may not be available when needed or be spe-
cific enough (Dunn, Tolle, Moss, & Black, 2007).
If someone has written advance directives, his or
her substitute decision maker should also have a
copy. It is important that health care providers are
made aware of a patient’s advance directives and,
preferably, a copy kept with the patient’s chart.
Nurses need to make themselves familiar with such
advance directives so they can advocate for the pa-
tient as needed when decisions are being made.
Advance care planning is a process that is best
initiated early in the illness experience and revisited
as the illness progresses because preferences can
change over time (Robinson, 2011, 2012). These
types of conversations are difficult to have among
family members, and families may appreciate assis-
tance to initiate and facilitate the conversation.
Nurses can facilitate the process and empower both
patients and families by encouraging them to talk
about end-of-life issues and preferences long before
they are faced with the situation and by initiating
discussions about substitute decision making, in-
cluding the legalities of representation. The process
of substitute decision making can be a very demand-
ing one for families (Meeker, 2004), and written ad-
vance directives can be helpful to family members
(Robinson, 2011, 2012), particularly in reminding
them of their loved one’s wishes when there may be
differences in what each thought would be best. In
addition, when faced with actually making deci-
sions, family members often appreciate acknowl-
edgment of the difficulty of their role, and the
nurse’s attentive, respectful support throughout the
process will be very helpful (Meeker, 2004).
Involvement in Decision Making
Families may be facing their first experience with
death and dying, and they often depend on nurses
to help them in their process. Families may not
know what they need or what might be possible
(Selman et al., 2007); they may expect health pro-
fessionals to bring up issues when appropriate—
that is, the family members may feel it is not their
place to raise issues first (Robinson, 2011), so
nurses need to open the conversation. It is impor-
tant first to assess and then respect the patient’s and
family’s desired level of involvement in discussions
about end of life and in decision making. Nurses
should ask questions such as, “How are important
decisions made in your family?” and “How would
you like important decision making to go now?”
so they understand the family’s approach and can
facilitate appropriate interactions that respect family
choice.
Some patients and families may want full re-
sponsibility for decisions; some may want to be in-
volved but not make final decisions; some may want
the physician to take the initiative and make all de-
cisions (Selman et al., 2007; Shiozaki et al., 2005);
and some patients want their family members to
make decisions (Torke et al., 2005). Some parents
feel that making decisions for the child is inher-
ently a parental role, but not all want to have com-
plete responsibility for final decisions (Brosig,
Pierucci, Kupst, & Leuthner, 2007; Contro et al.,
2002, 2004; Hays et al., 2006; Meyer et al., 2006;
Pector, 2004b; Sharman et al., 2005). Again, assess-
ment of preferences about decision making is im-
portant. Nurses can use questions such as, “I
understand that different family members will have
different talents or strengths; how do you most
want to be involved?” to uncover family members’
preferences so they can work with the family in
ways that facilitate choice.
Regardless of their actual role in the decision-
making process, parents want to be recognized as
the experts on their child and as the central, con-
sistent figures in their child’s life. As such, they
want health professionals to seek out and respect
their knowledge, opinions, observations, and con-
cerns about their child (Kars, Grypdonck, & van
Delden, 2011; Hsiao et al., 2007; Meyer et al.,
2006; Steele, 2002, 2005a; Weidner et al., 2011;
Widger & Picot, 2008; Woodgate, 2006). There-
fore, nurses should verbally acknowledge that the
parent’s input is critical and they should be mindful
of paying attention to facilitating the parent’s
choices, regardless of their own beliefs.
The involvement of family members in decision
making can have a lifelong effect on the well-being
of family members (Christakis & Iwashyna, 2003;
Kreicbergs et al., 2005; Surkan et al., 2006).
Nurses, therefore, must foster good communication
to ensure that the patient’s and family’s needs and
wishes are understood and supported within a caring
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Families in Palliative and End-of-Life Care 297
relationship that is built on partnership between pro-
fessionals and families (Robinson, 2011). Many times
health care providers block families from participat-
ing because they feel they know what is best or be-
cause they are trying to protect families. But effective
end-of-life care is not possible unless open and mu-
tual communication occurs between families and
professionals, and families participate in shared de-
cision making to the extent they desire (Robinson,
2011). Questions such as, “If you were to think ahead
a bit, how do you see things going in the next few
weeks?” and “Families often find it helpful to talk
about the care they want at end of life. Have you
been able to have a conversation about this? I wonder
if I might be able to help you start this conversation,”
can be used to learn what a patient and family want.
See Box 10-4 for other questions that may help
nurses become cognizant of a family’s choices.
Awareness of Possibility of Death
Lack of early information about the possibility of
death makes it difficult for family members to come
to terms with decisions such as the withdrawal of
life-sustaining therapy or the use of cardiopul-
monary resuscitation (Heyland, Frank, et al., 2006).
Families faced with these types of decisions usually
place great value on open, honest, and timely in-
formation, but they also need to be listened to in
terms of their intimate knowledge of the patient
rather than just spoken to (Hunstad & Svindseth,
2011; McDonagh et al., 2004). Moreover, it is cru-
cial to prepare the family for what to expect when
life-sustaining therapy is withdrawn. For example,
families need to be aware that death may occur very
quickly, or may take hours or days (Wiegand,
2006). When decisions are made, such as with-
drawal of life-sustaining therapy, any delays past
the agreed-on time for implementing the decision
may greatly increase the family’s anxiety (Wiegand,
2006). Therefore, it is important for nurses to keep
the family informed about the reasons for any
changes to the plan and to be available to talk with
family members when needed.
Building on Strengths
Nurses need to recognize the dying person’s and
family members’ rights and abilities to make their
own decisions and then make an effort to find out
what is important to them. It is important to focus
on what patients and families can do, rather than on
what they cannot do. As a nurse, you can reinforce
those aspects of the self that remain intact, and assist
patients and families to recognize their own
strengths and abilities. Once you identify and build
on individual and family strengths, you can smooth
the way for patients and families to meet their own
needs. Nurses can work with patients and families
by making suggestions, providing options, and plan-
ning strategies that will allow them to achieve their
goals. Your professional knowledge may be invalu-
able in guiding families to consider options and pos-
sible routes of actions that they would not have
thought of without your input, for example, the use
of special equipment that allows a patient to have
the bath that he thought was not possible because
of his weakness. Furthermore, you may have a
clearer sense of the consequences of certain choices,
which again is extremely valuable information. At
the very least, you can seek out answers to families’
questions and be a resource for families.
Facilitating choices also means identifying and
accepting a patient’s and family’s limitations, and
finding ways to work with them so they achieve an
outcome that is both positive and satisfactory to
them. For example, you can suggest new activities
that are appropriate for the patient’s current capa-
bilities. It is important that relationships remain
mutual and reciprocal, and patients in particular
need to experience their positive contribution to
their family members. Thus, as patients get sicker,
their contribution will look different and may focus
on such things as words of wisdom rather than con-
crete actions.
Offering Resources
One nurse cannot be all things to every patient and
family. It is important to be aware of other team
members, such as spiritual or pastoral care providers
(Wall, Engelberg, Gries, Glavan, & Curtis, 2007),
social workers, and others who may be available to
provide support to the family. Furthermore, the
nurse should be knowledgeable about hospital- and
community-based services, such as hospice, that
may be available to support families both before and
after the death (Casarett, Crowley, Stevenson, Xie,
& Teno, 2005). You can offer these other resources
and services to families, but each family will decide
what will actually be helpful for them. For some
families, using inpatient respite services during
the last year of life may help relieve their burden, if
only for a short time, whereas other caregivers may
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experience feelings of guilt and increased stress
caused by worrying about the quality of care pro-
vided during respite (Skilbeck et al., 2005). Care-
givers may be supported in their role simply by
knowing there are other resources and support
readily available, even if they do not make use of
them (Stajduhar et al., 2008).
Encouraging Patients and Families
Patients and family members often seek approval
and encouragement from professionals as they
make decisions about how to meet their needs.
Encouraging is an important strategy in empow-
ering patients and families to do for themselves.
It means verbally and nonverbally supporting
patients and families in their choices, providing
reinforcement for each individual’s ideas, and
demonstrating your support by finding ways to
facilitate their choices. Encouraging does not nec-
essarily mean that you agree with the choice,
merely that you support the patient or family
member in finding ways to enact the choice. At
the same time, encouraging does not mean you
abandon your expertise, which is complementary
to the expertise of the family. Sharing your knowl-
edge and perspective contributes to fully informed
decision making.
It can sometimes be too easy to think that you
know what is “best” for patients and their families.
As a caring professional, you have their best inter-
ests at heart and you want to protect them as
much as possible. Even as you value each person
as a worthwhile individual who has the right and
ability to make his or her own choices and deci-
sions, you may find that the patient’s and family’s
desires conflict with what you believe is “best”
based on your professional experience and knowl-
edge. Times such as these can cause you moral
distress as you struggle with supporting the pa-
tient and family, while remaining “true” to the
knowledge you have. Your negotiation skills may
be severely tested in such situations, and some-
times you will be tempted to override a patient’s
wishes. Some nurses describe their bottom line as
“ensuring patient safety,” and unless the patient’s
physical safety is compromised they will support
the patient’s choice, even when they disagree with
it. Encouraging supports families to figure out
ways to do what is important for them in the best
way possible.
Managing Negative Feelings
End-of-life care is not all encouragement and pos-
itive feelings. Many patients and family members
also have negative feelings that influence their ex-
periences. Talking with patients and family mem-
bers (often individually) about those negative
feelings gives them permission to have, experience,
and deal with them. For many people, negative feel-
ings, such as guilt or anger, are suppressed or inter-
nalized. Others openly express their anger but
displace it onto someone else, often the nurse or
other family members. The ability to diffuse a situ-
ation effectively requires nurses to learn how to ac-
cept someone else’s negative feelings in an open and
nondefensive manner. It means not taking their
words as a personal attack, but realizing that pa-
tients and family members simply need a safe outlet
for their frustrations and negative feelings. Your
role is to listen in an accepting way and allow them
to ventilate. It can be hard to face an angry tirade,
but most people will calm down once they have said
what they need to say and they realize that you value
their feelings even if they are negative ones. Ques-
tions that are often useful include “How can I
help?” or “What needs to be different?”
Sometimes, however, people will remain angry or
guilty despite your best efforts. Diffusing will not al-
ways be as successful as you would like. Some people
are so angry about what is happening to their loved
one and their family that they cannot move to any
other emotional state. You will need to accept that
this is their reality and find ways to work with them.
This is often a time when nurses need the support
of colleagues, and a team approach may help to
lessen the effects of working with these patients and
families (Namasivayam, Orb, & O’Connor, 2005).
Other interventions that may be helpful include re-
ferral to resources such as social work, pastoral care,
psychology, and support groups.
Facilitating Healing Between
Family Members
Negative feelings and misunderstandings can cause
or expand rifts in families. If a nurse can facilitate
healing between family members that unifies the
family, the family can function better as a team and
members are better equipped to move through the
dying process. You can help mend relationships
by interpreting family members’ behaviors to one
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another and helping them to see each other’s point
of view. Sometimes an outsider can bring clarity to a
situation that is impossible for those members who
are enmeshed in it. An assessment question that may
be useful is this: “Is there anything that is unsaid or
undone in the family that needs your attention?” Be
careful, though, that you do not try to “fix broken
families.” Many families that you might think are
dysfunctional do not see themselves as having diffi-
culties or needing to change. They will not invite you
to fix them and, indeed, may find your concern about
the family intrusive. Furthermore, relationships de-
velop over many years and your interventions will
occur in a relatively short period. Do not expect a
huge change in family dynamics during the time you
know a family, unless the family wants to change and
makes an effort to do so. Sometimes all you can do is
acknowledge to yourself that certain things cannot
be fixed and your presence is all you have to offer.
Levels of family functioning will need to be attended
to carefully as you work with a family, and the expec-
tation that a family will pull together to cope with the
process of dying may be unrealistic. Noticing the
family members’ love for the ill member and ac-
knowledging their mutual desire for the best for their
ill member (even though there may be quite different
ideas about what is best) is sometimes helpful.
Family Meetings
Family meetings typically involve the patient,
those family members desired by the patient, and
the relevant health professionals (Hudson, Quinn,
O’Hanlon, & Aranda, 2008). They should rou-
tinely be offered on admission to a setting and fur-
ther meetings may be called by the patient/family
or health care professional on an “as needed”
basis. Family meetings should be considered a
proactive approach and not be held in reserve only
for “crisis” situations. Family meetings are bene-
ficial to facilitate consistency in everyone’s under-
standing of the situation and the expected course
for the illness (Hudson et al., 2008; Wiegand,
2006), as well as for negotiation of care. They en-
able patients, family members, and professionals
to meet together to discuss any issue, but they are
not family therapy (Fineberg, 2005, 2010).
Nurses are ideal partners to lead these end-of-
life family conferences. In all settings, you can assist
families in preparing for the meetings by helping
them to write down questions that they want to
raise at the meeting, informing the family about
what to expect during the conference, and dis-
cussing what the patient values in life, the patient’s
and the family members’ spiritual and religious
needs, and what the patient may want if she is un-
able to participate in the conference (Curtis et al.,
2001). It is helpful to begin by eliciting the family’s
understanding of the situation, as well as pressing
concerns, before moving to the health professionals’
perspectives. Different family members and profes-
sionals will have different ideas, so it is useful to re-
quest different perspectives. Afterward, you can talk
with the family about how the conference went,
what the changes in the patient’s plan of care are
and what they mean, and how the family feels about
the conference and changed plan of care (Curtis
et al., 2001; Hudson et al., 2008). You also should
talk with the family about the decisions that were
made and then support them in these decisions.
More than one family meeting may be necessary
as the patient’s condition changes or if the family
needs time to think or further discuss issues before
decisions are made (Hudson et al., 2008; Wiegand,
2006). The proportion of time the family spends
talking during these conferences is more important
than the total length of the conference in increasing
family satisfaction and decreasing conflict between
families and health professionals (McDonagh et al.,
2004). Yet, on average, typical family conferences
involve the health professional speaking for 70% of
the time and listening for only 30% of the time
(McDonagh et al., 2004). It is important that you
pay careful attention to ensure that families do the
majority of talking during family meetings. In ad-
dition, be mindful of your nonverbal communi-
cation, because it is often our main method of
communication, and is particularly powerful when
the topics are emotional. For example, wrapping
your arms around yourself may indicate anxiety; in-
terrupting may be a sign of impatience.
Finding Meaning
When recovery is impossible, nurses must consider
their role in helping patients and families find
meaning in the experience as they care for and as-
sist families. Patients and families often struggle to
understand why the patient is dying. They try to
make sense of the experience, and they search for
ways to make the patient’s life and inevitable death
meaningful. Their search for meaning may involve
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examining relationships within the family or with
a higher power (Hexem, Mollen, Carroll, Lanctot,
& Feudtner, 2011). Some people will be more suc-
cessful at finding meaning than others or the
process may not occur until long after the death
(Widger et al., 2009).
As a nurse, you can assist in this process of find-
ing meaning by truly listening and hearing what
family members have to say. Engaging in relation-
ship and dialogue will be empowering and can help
families create meaning even in a difficult situation
(Abma, 2005). But there are many different ways of
finding meaning, and not all individuals will overtly
search for meaning. As a nurse, you will accompany
people as they try to make sense of their situation.
You cannot find meaning for someone else, how-
ever (Robinson et al., 2006). Each individual will
seek his own meaning in his own unique way. Some
may be very articulate about their philosophical
and spiritual beliefs and how they influence mean-
ing making (Hexem et al., 2011; Knapp et al.,
2011). Others may talk about these issues in more
concrete terms, perhaps rarely having articulated
their thoughts and feelings. Still others may “talk”
through their actions. Finding meaning gives
strength to people, and therefore, you will find that
it is empowering for families. Nurses who examine
the concepts of meaning of illness and dying with
patients may gain a deepened understanding of the
patients’ experiences, which may lead to changes
and improvements in the way care is provided
(Gauthier, 2002). You might begin this examina-
tion by asking the patient: “Can you tell me what
it is like to be at this point in your life?”
Care at the Time of Actively Dying
Patients who are dying are often most concerned
about how they will die rather than that they are
dying (Kuhl, 2002). Excellent pain and symptom
management is critical as uncontrolled pain or symp-
toms such as nausea and breathlessness create suffer-
ing for all family members. A “good death” may
contribute to family members feeling more at peace
with the death (Mok et al., 2002), and also having a
sense of satisfaction and accomplishment (Perreault
et al., 2004). Parents often believe that their child’s
peaceful death means that they made the right
choices and that they did all that they could for their
child (Hinds et al., 2000). Thus, facilitating a good
death is an imperative for nurses. What constitutes a
good death, however, is not well understood. From
observations of patients, family members, and health
care providers, six major components of a good death
have been identified: pain and symptom manage-
ment, clear decision making, preparation for death,
completion, contributing to others, and affirmation
of the whole person (Steinhauser et al., 2000). A bad
death has been defined by a “lack of opportunity to
plan ahead, arrange personal affairs, decrease family
burden, or say good-bye” (Steinhauser et al., 2000,
p. 829).
In the context of a palliative care approach, the
language of care, quality of life, relief of suffering,
and the principles of palliative care become impor-
tant in helping families attain a “good death.”
When a cure is not possible, families often react
to the news with a blanket statement: “We want
everything done.” But that may not be what they
mean literally. Families may just believe that if they
agree to palliative care, treatment will be withheld,
and they will be abandoned because death is the ex-
pected outcome (Gillis, 2008). Delaying palliative
care compromises the ability to achieve a good
death. Clear discussions are needed about the con-
tinued provision of active care with a shift in em-
phasis to quality of life instead of prolongation of
life. Such discussions will reassure families that, in-
deed, everything is being done and they are not
being abandoned.
No matter the setting, family members are often
afraid of the actual death event and have little or
no understanding of what dying entails. You will
find that sometimes the greatest gift you can give
families as they prepare for the death is helping
them release the dying person, to forgive them-
selves and their loved one so she can die in peace
(Cooke, 1992). Nurses can help alleviate families’
fears by finding out what they know and what they
need. You can then prepare families for the death
and help them recognize the signs of imminent
death so they are aware of what will likely happen
when the signs appear (see Box 10-6). This prepa-
ration may be even more crucial for families in the
home, who may be alone at the time. It also is im-
portant in the intensive care unit (ICU) and emer-
gency department to tailor your information to the
situation. For example, a patient’s breathing will
not change if he is on a ventilator.
Generally, an illness begins to weaken the body
when a person is nearing death. Some health con-
ditions affect vital body systems, such as the brain
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and nervous system, lungs, heart and blood vessels,
or the digestive system, including the liver and
bowels. As illnesses progress, the body becomes un-
able to use the nutrients in food, resulting in weight
loss and a decline in appetite, energy, and strength.
More time is spent resting, and in the final few days
before death, people usually sleep most of the time.
If families are aware of this natural progression,
they may be less distressed, for example, when their
loved one stops eating. One sign of imminent
death, terminal restlessness, can be distressing
for family members to watch (Brajtman, 2005).
Sedation at the end of life may be necessary to con-
trol severe symptoms such as terminal restlessness.
Box 10-6 lists signs of imminent death that should
be shared with families.
Communication and relationships continue
to be important as death approaches (Munn &
Zimmerman, 2006). Nurses can encourage family
members to continue talking to their loved ones
even if they are nonresponsive, because they may
still be able to hear (Brajtman, 2005). You can
model this type of interaction by continuing to
speak to the patient and treating him with dignity
throughout the dying process. You can demon-
strate respect for the family and its intimate knowl-
edge of the patient by seeking its advice on things
that were soothing or calming to the patient in the
past, such as particular music, foot rubs and back
rubs, or a particular way of arranging the pillows,
and then following these suggestions or encourag-
ing the family to do so (Brajtman, 2005).
Families in Palliative and End-of-Life Care 301
BOX 10-6
Signs of Imminent Death
Decline in physical capabilities
Decreased alertness and social interaction
Decreased intake of food and fluids
Difficulty swallowing medications, food, and fluids
Visual and auditory hallucinations
Confusion, restlessness, agitation
Physical changes as death nears include the following:
■ Circulation gradually shuts down; hands and feet feel
cool, and a patchy, purplish color called mottling
appears on the skin; heart speeds up, but also
weakens, so pulse is rapid but hard to feel.
■ Bowel movements and urine production decrease as
less food and fluid are taken in; may be no urine out-
put in last day or two of life; constipation is not usu-
ally an issue to be managed in the last week of life;
loss of bladder or bowel control can be managed
with frequent skin care and the use of adult inconti-
nence products, or even a urinary catheter if needed.
Changes in breathing often provide clues about how
close someone is to death. As the automatic centers
in the brain take over the regulation of breathing,
changes generally occur in the following ways:
■ The rate of breathing tends to be more rapid.
■ The pattern or regularity in breathing becomes
irregular, almost mechanical.
■ How deep the breaths are (may be shallow, deep, or
normal) tends to become more shallow. There may
be periods of apnea where breathing pauses for a
while. When the pauses in breathing appear, a no-
ticeable pattern often develops: clusters of fairly rapid
breathing that start with shallow breaths that become
deeper and deeper, and then fade off, becoming
shallower and shallower; may be 5 to 10 breaths in
each cluster, and each cluster is separated by a
pause that may last a few seconds or perhaps up to
30 seconds; called the Cheyne-Stokes pattern of
breathing and is occasionally seen in healthy elderly
people as well, especially during sleep.
■ The kinds of muscles used in breathing may change;
the person may start to use the neck muscles and
the shoulders, but though it may look as if the per-
son is struggling, unless he or she is agitated it is
simply “automatic pilot.”
■ The amount of mucus or secretions that build up be-
cause the person is unable to cough can be noisy
(rattling or gurgling) and sometimes upsets people
at the bedside even though it is unlikely to be dis-
tressing to the dying person, who is usually uncon-
scious; some people call it the “death rattle,” and it
can be treated by medication to dry up the secre-
tions. Because the term death rattle may cause
strong emotional reactions, the term respiratory
congestion is now recommended.
■ The pattern of breathing in the final minutes or per-
haps hours of life: the breathing takes on an irregular
pattern in which there is a breath, then a pause,
then another breath or two, then another pause, and
so forth. There may be periods of 15 to 30 seconds
or so between final breaths.
■ After the last breath very slight motions of breathing
may happen irregularly for a few minutes. These are
reflex actions and are not signs of distress.
3921_Ch10_277-320 05/06/14 11:08 AM Page 301
Many family members want to be present
when their loved one is imminently dying; it is
often important that they have an opportunity to
say good-bye (Andershed, 2006). Thus, you need
to be aware ahead of time about a family’s wishes
and ensure that members are called if there is a
change in the patient’s condition so they can be
present, if possible, at the time of death if that is
what they want. The days, hours, and minutes
leading up to a child’s death are often seen by
parents as their last opportunity to be a “good
parent” to the child. Their ability to be physically
present, emotionally supportive, and an effective
advocate for their child is often key to viewing
themselves as good parents in the years after their
child’s death (Meert et al., 2005; Rini & Loriz,
2007; Sharman et al., 2005; Woodgate, 2006).
“Normal” parent activities such as bathing, feed-
ing, or holding the child, even in the midst of
technology that is being used to support the
child’s life, allow parents to develop or continue
their bond with their child and sometimes to be
able to say good-bye to their child (Brosig et al.,
2007; Meert et al., 2005; Meyer et al., 2006;
Pector, 2004a, 2004b; Rini & Loriz, 2007; Robinson
et al., 2006; Sharman et al., 2005; Steele, Davies,
Collins, & Cook, 2005). As a nurse, therefore, you
need to facilitate parents’ wishes at this time and
provide an environment that allows for parents to
fulfill their parental role.
We cannot know when a patient will die, and
despite our best efforts, sometimes this happens
when family members are not present. Sometimes
the patient dies when the family member has nod-
ded off to sleep or stepped out of the room for a
cup of tea. When family members wish to be pres-
ent, it is important to talk about the possibility that
this may not happen.
Bereavement Care
Once the patient dies, the work of the nurse does
not end (O’Connor, Peters, Lee, & Webster,
2005). A lot of family members may be present for
the death, all of whom may need support, advice,
information, and time to begin the grieving and
healing process. Family members may wish to stay
by the bedside and say whatever words seem ap-
propriate. For some cultures, rituals may need to
be conducted (O’Connor et al., 2005). Some fam-
ilies may want active involvement in caring for the
patient’s body or at least to know the body will be
cared for in a respectful manner (Pector, 2004a;
Widger & Picot, 2008). There is no harm in
touching the person’s body, and there should be
no rush to move the person until everyone has had
a chance to say their final good-byes.
Family members who were not present for the
death may need to be contacted and may wish to
see the patient before she is taken to the morgue
or a funeral home. As a nurse, you can encourage
the family to be together if it wishes and to take as
much time as needed after the death. Your pres-
ence as family members express their emotions
may help them to create meaningful final memo-
ries and begin to process their experience (Hannan
& Gibson, 2005; Meert et al., 2005; Pector, 2004a;
Rini & Loriz, 2007; Steele et al., 2005; Wisten &
Zingmark, 2007). You may need to contact pas-
toral care or other professionals to assist in sup-
porting the family. Some families will appreciate
your assistance with or information on arranging
funerals (de Jong-Berg & Kane, 2006; Pector,
2004a; Rini & Loriz, 2007).
Particularly when the patient who has died is a
child, families may appreciate you giving them a
collection of mementos such as pictures, locks of
hair, and handprints or footprints (de Jong-Berg
& Kane, 2006; Meert et al., 2005; Pector, 2004b;
Rini & Loriz, 2007; Tan, Docherty, Barfield, &
Brandon, 2012; Widger & Picot, 2008). Some
families later regret not taking mementos (de Jong-
Berg & Kane, 2006), but others may be distressed
if you take mementos, especially pictures, against
their wishes (Skene, 1998); therefore, determining
what each family wants and needs requires sensi-
tivity and a careful approach.
In some cases, autopsy and organ or tissue do-
nation may be possible. Nurses and other health
professionals sometimes view such discussions as
an intrusion and, thus, because of their own dis-
comfort, they do not approach families. Parents
in particular may have lingering regrets, however,
if they miss an opportunity to help another child
or to receive answers to some questions about
their own child’s death (Macdonald et al., 2006;
Widger & Picot, 2008). Therefore, you should
not be afraid to initiate these conversations should
they be indicated, or at least ensure that someone
initiates them. It is also important to make sure
that when autopsies are done, families are given
the results in a timely and compassionate manner
302 Families Across the Health Continuum
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(Macdonald et al., 2006; Meert et al., 2007; Rini
& Loriz, 2007; Wisten & Zingmark, 2007). Fam-
ilies may want to meet with health professionals
to discuss autopsy results, clarify the events lead-
ing to and the circumstances of the death, and be
reassured that everything possible was done and
the right decisions were made (Kreicbergs et al.,
2005; Macdonald et al., 2006; Milberg, Olsson,
Jakobsson, Olsson, & Friedrichsen, 2008; Pector,
2004a; Wisten & Zingmark, 2007; Woodgate,
2006).
It was previously thought that healing meant a
person got over their loss and severed ties with
the deceased. It is now known that one does not
“get over” the loss of a loved one; rather, families
will forever have links with the person who
has died (Moules, Simonson, Fleiszer, Prins, &
Glasgow, 2007). The ways in which continuing
bonds exist for different types of loss and their as-
sociations with positive and negative outcomes
for bereaved individuals is only beginning to be
explored (Foster et al., 2011). As a nurse, you can
do much to facilitate a healthy start to their griev-
ing journey and to help them find meaning in
death. Your actions at the actual death event are
critical. Family members vividly remember the
moment of their loved one’s death. They often
remember who was present, what was said, what
was done that was helpful, and what was not so
helpful. Many remember that it was the nurse
who was with them at the moment of death, or
that the nurse was the first to respond to the fam-
ily’s call about a change in their loved one’s con-
dition. More often than not, families clearly recall
the nurse’s words and actions. What you do for
and with family members at the time of their
loved one’s death can have a profound and long-
lasting impact on them. It is important to remem-
ber that, although the death may be one of many
for the nurse, it may be the first and only for the
family; therefore, a person’s death should never
be treated as “just a job” on the part of the nurse
(Shiozaki et al., 2005). Be cognizant too that
clichés such as “this was meant to be,” “he is in a
better place,” or referring to the deceased person
as an angel may make families feel that you are
minimizing the impact of the death on the family
(Pector, 2004a, 2004b). Simple expressions, such
as “I am sorry your husband is dying” (Tilden,
Tolle, Garland, & Nelson, 1995, p. 637), are more
often appreciated.
Nurses should have an understanding of loss,
know how to support families in grief, and be able
to provide quality bereavement care. Beginning
nurses often worry about showing emotion, such
as crying, in the presence of family members. Fam-
ily members are often deeply touched when they
see a nurse’s genuine emotional response, but it is
critical that the family not be put in the position of
caring for the nurse.
Provision of bereavement care by the nurse of-
fers the opportunity for continued contact with the
family and signifies the importance of the family to
the nurse (Collins-Tracey et al., 2009; Davies et al.,
2007; de Cinque et al., 2006; de Jong-Berg & Kane,
2006; Kreicbergs et al., 2005; Macdonald et al.,
2005; Meert et al., 2007; Rodger, Sherwood, O’-
Connor, & Leslie, 2007). Follow-up activities that
many families appreciate include calls, cards, atten-
dance at the funeral, and offers to make referrals to
additional sources of support as needed (Cherlin
et al., 2004). Families may appreciate written infor-
mation on practical issues, such as what to do next,
and about grief or other sources of support
(D’Agostino et al., 2008; de Cinque et al., 2006; de
Jong-Berg & Kane, 2006; Pector, 2004a; Rini &
Loriz, 2007; Rodger et al., 2007), as well as infor-
mation to share with extended family and friends
on how to offer effective support. Depending on
the setting, bereavement care may continue for a
period of time in the community. Sometimes
health care professionals call or send a card to fam-
ilies on the first anniversary of the patient’s death,
especially if it was a child who died. This simple
contact acknowledges that the grieving process
takes time and can make families feel really cared
for, once again highlighting the importance of the
patient and family to the professional (Collins-
Tracey et al., 2009).
Special Situations
There are some situations that can be challenging
for nurses to consider and deserve additional atten-
tion. More specific assessment and intervention
tools may be required in order to offer optimal care.
Facilitating Connections for Children When a
Family Member Is Critically Ill
When a family member is critically ill, families and
professionals may have a concern about the impor-
tance and impact of bringing children to visit,
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whether at home, in the ICU, or in any other set-
ting. Yet, these visits may reduce feelings of sepa-
ration, guilt, abandonment, fear, loneliness, and
worry for the child (Nolbris & Hellstrom, 2005;
Vint, 2005). Children can generally decide for
themselves if they wish to visit and, where possible,
families and health care professionals should re-
spect their decision. Those younger than 10 visit-
ing a relative may be most interested in the
equipment, whereas older children may spend
more time focused on the person they are visiting
(Knutsson & Bergbom, 2007). The visit can also
benefit the patient by acting as a diversion, offering
hope, and bringing a sense of normalcy (Vint,
2005). Thus, nurses should offer families the op-
tion of bringing children in to visit loved ones.
Talking with the patient and family about previ-
ous experiences with children visiting can be helpful,
for example, “Sometimes family members are afraid
that a child will be very upset to see grandpa looking
so sick. Are you worried about that possibility?” and
“In my experience, children are very curious, as well
as resilient. They often suspect that something bad
is happening and they imagine terrible scenarios.
Being truthful and also letting them see for them-
selves what is happening can be very beneficial.” You
can assist families to prepare children beforehand
about what they will see and what to expect; you also
can be present during the visit to support family
members in answering questions and to make the
child feel welcome and an important part of the
family (Knutsson & Bergbom, 2007; Nolbris &
Hellstrom, 2005; Vint, 2005). It is important that
everyone realizes a child’s reactions are somewhat
unpredictable; one child may seem unaffected while
another may be upset and crying. Nurses should ac-
knowledge that every reaction is “normal” and work
with the child in a way that meets his needs at the
time. Though it may be difficult for a critically ill
patient when a child chooses not to visit, you can
help the patient understand by sharing your knowl-
edge about how children need to make their own
decisions and you can offer ways to assist in main-
taining connections between the child and the ill
family member through cards, calls, and frequent
updates about how the patient is doing.
When Death Is Sudden or Traumatic
Unlike with chronic illness, a sudden or traumatic
death leaves little time for families to come to terms
with the situation. Further, the nature of a fre-
quently chaotic environment when death is trau-
matic or sudden may contribute to a lack of
communication between professionals and families.
It is important that the information given to fami-
lies include the big picture; otherwise, families
often receive different pieces of information from
each health professional and may have trouble put-
ting it all together to understand that it actually
means the patient is dying. This may be more of an
issue in situations when there is a sudden illness or
injury because the family has little experience and
may be unprepared for what is happening (Meert,
Thurston, & Briller, 2005; Rini & Loriz, 2007;
Wiegand, 2006).
In critical care areas, nurses may be less apt to
support patients and their families emotionally and
psychologically (Nordgren & Olsson, 2004; Price,
2004) because they give more attention to manag-
ing the patient’s physical symptoms systematically
and efficiently. Family members may not be at-
tended to as nurses deal with the acuity of evolving
situations. Yet, research shows that family members
of patients in ICUs often experience anxiety and
depression (Pochard et al., 2001). Furthermore, in-
sufficient information and death in the ICU have
been associated with posttraumatic stress disorder
in families of ICU patients (Azoulay et al., 2005).
Therefore, it is necessary to offer psychological
support, such as ongoing assessment of and infor-
mation for families of patients who are cared for
and who may ultimately die in ICUs (White &
Luce, 2004).
Whether during a sudden or traumatic event
that necessitates admission to the emergency de-
partment or the quickly shifting situations in
ICU, nurses need to remember that amidst the
technology are real people who need connec-
tions. You may need to take a breath and briefly
step back so you can focus on the “bigger picture”
before you are able to help the family, but it is
critical that someone takes time for them. All of
the ways that you can connect with families can
work in ICU and emergency department settings,
but you need to create some space for the family
to ensure that the connections and communica-
tion happen. If family members are in the room,
you need to talk with them, explain what is hap-
pening, and be available to answer their ques-
tions. If they are waiting outside, make sure they
304 Families Across the Health Continuum
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have somewhere comfortable and private to sit,
and provide frequent updates about their loved
one. If you yourself are too busy providing urgent
care for the patient, make sure that someone is
designated to care for the family members and to
keep them involved as much as they want to be.
It is especially important that after a sudden or
traumatic death, nurses provide family members
with information about what will happen (e.g., in-
volvement of the coroner, how to contact a fu-
neral home, and how to obtain support in the
future). Nurses should also make sure that a family
member has a companion before leaving the set-
ting, so a friend or relative may need to be called
to be with the family member.
Sudden life-threatening events also bring the
possibility of administering cardiopulmonary re-
suscitation. Although some debate exists regard-
ing the presence of family members during
attempts at resuscitation, many settings do allow
for it. Parents in particular may voice a strong
belief that it is their right to be present during
these events (McGahey-Oakland, Lieder, Young,
& Jefferson, 2007; Meert et al., 2005; Rini &
Loriz, 2007; Wisten & Zingmark, 2007), because
they believe that their presence is a source of
strength and support for the child and being
present offers the opportunity to see for them-
selves that everything possible was done to assist
their child. Families need frequent updates if
they choose not to be present and must be given
information about what is happening if they are
present (McGahey-Oakland et al., 2007).
Dying at Home
Families need professional support, particularly in
the area of symptom control, to make a home death
“happen” (Brazil et al., 2005). Caring for a dying
family member at home can be extremely demand-
ing work—physically, emotionally, psychologically,
and spiritually. The primary caregivers require sup-
port and resources to be successful. First and fore-
most, the family and the nurse need to discuss the
dying process, existing resources, and present and
future needs. Then together they can develop a
plan that anticipates changes. For example, symp-
tom crises, such as escalating pain, need to be an-
ticipated and addressed in advance. When the
family is committed to supporting death at home,
it can be devastating when a symptom crisis results
in death in the middle of a busy emergency depart-
ment. Box 10-7 provides some practical suggestions
about what you need to consider and perhaps facil-
itate when someone is dying at home.
PALLIATIVE CARE AND END-OF-
LIFE FAMILY CASE STUDIES
Two family case studies are presented in this section
to demonstrate the art and science of family nursing
in palliative and end-of-life care. The Jones family
was introduced in Chapter 3 and is reintroduced here
to demonstrate family care when the person who
is dying is the mother. Please return to Chapter 3
and reacquaint yourself with the family and famil-
iarize yourself with the Jones family genogram in
Figure 10-2. The Garcia family case study illustrates
how a student nurse working with a preceptor assists
a young family with the death of an infant.
Families in Palliative and End-of-Life Care 305
BOX 10-7
Practical Considerations When Someone
Is Dying at Home
■ Involvement of expert resources, such as hospice, and
an interprofessional team, including volunteers.
■ Symptom management plan, including anticipating
changes such as inability to swallow and the need for
parenteral medications, as well as management of
breathlessness and agitation.
■ Advance care planning, including the presence of a
“Do Not Resuscitate” order if necessary.
■ Equipment such as a hospital bed and commode.
■ Identification of willing informal support persons
(friends, church, extended family).
■ Development of a list of things that willing people can
do, for example, a calendar for preparation of meals,
house cleaning, someone to visit so the caregiver can
get out for a walk.
■ Respite for the caregiver(s), which may be planned
hospice admissions or the overnight placement of a
paid professional.
■ Financial implications and available support, for exam-
ple, compassionate benefits program.
■ Contact numbers of resources.
■ Discussion of unfinished business to enable a peaceful
death.
■ Discussion of alternatives should dying and death at
home become impossible for any reason.
3921_Ch10_277-320 05/06/14 11:08 AM Page 305
306 Families Across the Health Continuum
Amy
19 yr
Katie
13 yr
Travis
4 yr
Freshman at
university 180
miles away
Healthy
Sixth grade
Healthy
Usually a good
student, now
showing some
difficulty noted
by teachers
Preschool,
moved
to full day
Healthy
Full-time software
engineer
Multiple sclerosis:
Progressive and relapse
UTI
Constipation
Difficulty swallowing
Requires supplemental 02
Uses wheelchair
Ralph
Elise
70 yr
Full-time employed
teacher, high school
Tom
64 yr
Sally
63 yr
Full-time
employed
secretary
Linda
43 yr
Robert
48 yr
FIGURE 10-2 Jones family genogram.
Family Case Study: Jones Family
Linda, the mother in the Jones family, has been living with
multiple sclerosis (MS) for 13 years. Early in the illness,
Linda experienced relapses where her symptoms worsened,
but these were followed by periods of remission where she
recovered back to “normal.” Since Travis’s birth, her relapses
became more frequent, and although her symptoms some-
times improved a little, her condition steadily worsened.
Before Linda’s discharge from the hospital where she
was treated with antibiotics for pneumonia after aspiration,
the primary nurse, Catherine, initiated a family meeting
with Linda, Robert, and Linda’s physician. Catherine had
noticed Robert’s fatigue and his repeated questions about
whether Linda was really ready to come home. Catherine
had also noticed Linda’s reluctance to take medications
(particularly for pain), her determination to walk with her
cane despite serious unsteadiness, and the deepening si-
lence between the husband and wife.
Catherine began the conversation by asking Linda and
Robert about their understanding of the MS at this point.
Linda quickly responded, saying that the pneumonia was
really an unusual “one-time” problem, and although it had
set her back, it would not be long before she was back on
her feet. Robert worried out loud that it seemed things
were getting progressively worse. He was concerned
about how Linda would manage at home alone in the
mornings and with Travis in the afternoon when he re-
turned from preschool. Noticing the difference in perspec-
tive, Catherine acknowledged she could see how there
might be differences because MS is, indeed, a “tricky”
illness that is difficult to predict. She asked Linda and
Robert to think back to how things were a year ago and to
what had happened over the last year. Both noticed that
the hospitalizations had become more frequent, the re-
coveries were more difficult, and overall, Linda was not
doing as well. The physician, Dr. Brooks, who had been
listening quietly, remarked that, although MS was often an
unpredictable disease, it seemed that Linda’s MS had
changed into a different kind of illness than it had been at
first. He agreed that now the MS was more steadily pro-
gressing, and that it seemed things were getting worse
more quickly. Linda said she could see this but kept hop-
ing that the situation would turn around.
Catherine then asked what the family’s goals for care
were. Linda was quick to answer, “Remission—I want full re-
mission.” Robert was slower to reply. He said, “I am so
tired, and it hurts me so much to see you suffer. I want you
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Families in Palliative and End-of-Life Care 307
to be comfortable, to be free of pain, to enjoy the kids
rather than snapping at them…” Linda said, “I’m just trying
so hard to get back to normal. I always thought that a
wheelchair would be the end for me. And I’m just so tired.”
Catherine acknowledged that MS often creates profound
fatigue in many family members and wondered which of
the children might be most affected. Both Linda and
Robert agreed that, of the children, Katie was suffering the
most from tiredness. She picked up a lot of the pieces of
Linda’s work in the home, beginning supper preparations
and looking after Travis. Often, she would be up late at
night working on homework, but her grades had been slip-
ping and she had been crying more. Linda worried that
Amy was also tired as she spent a great deal of time driv-
ing home on weekends to care for the family.
Dr. Brooks interjected at this point saying that their pri-
mary goal for care during this hospitalization had been to
cure the pneumonia. He noted that, although they were
successful, they had not been able to assist Linda toward a
remission of her MS. He remarked that with the change in
the MS, it seemed that the hope for remission might not be
possible. He then asked, “If things continue the way they
are going, where do you think you will be in six months?”
Linda began to cry and said she was thinking she might not
be alive. The pneumonia scared her, and she was fright-
ened about aspirating again, so she had been decreasing
what she ate and drank. Robert was worried about how he
could continue to work full time supporting the family and
also care for Linda at home, especially as it seemed there
was so little he did that was “right” for Linda.
Catherine replied that the “new” MS was clearly creat-
ing challenges for the family and wondered if it was time
to shift the focus of care more toward comfort and quality
of life for all family members, while at the same time
working to prevent problems such as aspiration. She ex-
plained that as illness gets more demanding, additional
supports are needed. She also explained that as illness
gets intrusive, attention needs to be paid to what is most
important to living well for all family members. Linda was
getting tired at this point and having a lot of difficulty hold-
ing her head up, so Catherine asked if they could sched-
ule another meeting. Robert and Linda readily agreed,
saying they knew they needed to talk about these things
but just did not know how. Catherine asked them to do
some homework: to each identify their biggest concern, as
well as what was most important to living well at this time.
They were asked to find this out from the children too,
and a meeting was scheduled for the next day. Dr. Brooks
let them know that he wanted to speak with them about
Linda’s preferences for care should she have another ex-
perience with pneumonia.
The next day, Linda, Robert, Catherine, and Dr. Brooks
all met again. Linda began the conversation, saying she
had done a great deal of soul searching and was most
worried about suffering from unmanageable pain and
being a burden to her family. She was wondering if per-
haps she should not go home but should be admitted into
a care facility. Robert was most worried about burning out
and not being able to support Linda and the children as he
wanted. They had had a three-way conversation with each
of the children last evening. Amy was most worried that
her mother was going to die, and she let her parents know
that she was planning on leaving university to move back
home. Katie was most troubled by her lack of friends as
her friends were no longer including her in their activities.
Travis missed his mother, and wanted her to be able to
read stories to him and play with him more.
The things that were most important to Linda’s quality
of life were reducing her pain, having Amy continue at uni-
versity, being more involved in Katie’s and Travis’s everyday
lives, being able to attend a service at her church on a
weekly basis, and reconnecting with Robert. She said her
greatest hope was to be at home as long as possible.
Robert wanted to be able to sleep, to go to work without
constantly worrying about Linda, and to reconnect to Linda.
He too wanted her at home as long as possible. Both
Linda and Robert agreed that for them to live well, they
needed more help in their home. Options were discussed,
including the possibility of Elise (Robert’s mother) moving
in to be of assistance, and preplanned, short stays in hos-
pice for respite. Linda did not want Elise doing her personal
care, so again, they discussed their options. Dr. Brooks and
the family developed a systematic plan for pain manage-
ment. During the assessment process, he learned that
Linda was refusing her medications because she was con-
cerned they were contributing to her irritability with Robert
and the children. He was able to reassure her that this was
not the case; in fact, her unmanaged pain was more likely
a major negative influence. They devised a plan for long-
acting pain medication so that Robert would be able to
sleep through the night. They consulted a dietitian regard-
ing ways to manage swallowing problems, and scheduled a
home assessment by the team physiotherapist so as to
safely maximize Linda’s mobility.
Both Catherine and Dr. Brooks commended Linda and
Robert on the deep love they saw between the couple and
how effective they were at problem solving, systematically
working their issues through until achieving a mutually sat-
isfying outcome. Finally, Dr. Brooks raised the topic of what
Linda’s preferences for care would be if she should experi-
ence development of pneumonia again. He explained that
(continued)
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308 Families Across the Health Continuum
this was a real possibility because Linda’s respiratory mus-
cles were weakening. Dr. Brooks understood that both
Linda and Robert wanted her home as long as possible, so
he was curious about whether she would want to come to
the hospital to be treated with intravenous antibiotics as
she had during this hospitalization. Linda stated this would
be her preference, especially if she was likely to be able to
go home again after the treatment. Dr. Brooks explained
that as her muscles become weaker, she might need the
assistance of a breathing machine (ventilator) to give the
antibiotics time to work against the infection, and asked
whether she would want that. Linda was not sure what her
preference would be in this situation, but she was very
clear that she did not want to be “kept alive on a machine.”
She and Robert wanted more time to discuss this question,
and they wanted to consult with their pastor, so they
agreed to continue the conversation at the next doctor’s
appointment. Robert and Linda agreed to visit the local
hospice to explore respite opportunities, as well as end-of-
life care, should staying at home prove too difficult.
Three weeks later at the scheduled appointment with
Dr. Brooks, Linda let him know that many things were
going better with Elise in the house and home visits from
Catherine, as well as a personal care aide. Amy agreed to
stay in college with the promise from her parents that she
would be told immediately if Linda’s health changed. All
family members were feeling less tired. Linda stated that
she was not ready to leave Robert and the children, but
was in a dilemma about the use of a ventilator if she de-
veloped pneumonia. She continued to worry that she
might be kept alive on the machine, which to her would
not be considered living. Dr. Brooks explained that, if nec-
essary, one possibility was a time-limited trial of a ventilator
to determine whether the antibiotics would work. Both
Linda and Robert agreed. This was a difficult discussion,
and Linda expressed distress about her loss of independ-
ence and her deep sorrow about the possibility of leaving
her children. She admitted to swinging between despair
and anger, and that both made it hard for her to enjoy her
days. This was new information to Robert, who had noticed
her struggling but thought things would work out over time.
Through assessment, it became apparent that Linda was
experiencing depression. She agreed to try an antidepres-
sant medication and to join a local MS support group.
Eight Months Later:
Linda experienced fever, congestion, and shortness of
breath after aspiration. The health team initiated antibiotics
and managed symptoms to relieve pain, breathlessness,
fever, and constipation. Linda occasionally had periods of
acute shortness of breath where she worried that she might
not be able to take her next breath. The fear served to
make the breathlessness worse, so the visiting nurse
showed both Linda and the family how to slow and deepen
breathing by consciously breathing together. Dr. Brooks
made a home visit and asked Linda about admission to the
hospital. When he could not assure her that she would get
off the ventilator, Linda declined, saying she wanted to stay
with her family. Robert agreed. A family meeting with
Catherine and Dr. Brooks was held at Linda’s bedside to dis-
cuss what the family would experience if the pneumonia
progressed. They developed a family ecomap (Fig. 10-3)
and they increased support services with more frequent vis-
its from the nurse, care aide, and friends (particularly from
Linda’s support group). They discussed a move to hospice,
but all agreed that home was the best place for Linda, and
that death at home was their preference.
Linda engaged in one-on-one time with each of her chil-
dren. They talked about their best memories together, what
they most loved about each other, and their hopes and
dreams for the future as the children grow up. Robert partici-
pated by videotaping the conversations. Each child was
given a journal, and together with Linda, they drew pictures,
wrote notes, and gathered mementos to capture these con-
versations. She organized gifts for their birthdays and for
Christmas in the upcoming year. It was not that she knew
she was dying, but she had been encouraged to plan for the
worst and hope for the best, to do the things that needed
doing. The family received the same encouragement so they
were all able to have special time with Linda over the last
few months. Linda died surrounded by her family.
Six Weeks Later:
Catherine visited the family six weeks after Linda’s death
and found them managing well. Pictures of Linda were
everywhere. Elise continued to live with the family, and they
thought this was the best plan for the time being. Robert
had taken some time off work to be with the children after
Linda’s death, but shortly afterward all went back to work
and school. Amy still came home on some weekends.
Robert, Amy, and Katie talked of their sense of having done
the very best they could to honor Linda’s preferences. They
took comfort in the fact that she died at home. They
marked the 1-month anniversary of Linda’s death with a
visit to her grave site, taking flowers and a picture Travis had
drawn of his mother. Family members drew support from
different sources: each other, friends, their pastor, and some
of the people from the MS support group who continued to
visit. The children continued to read and reread the letters
Linda had written; for Travis, this was part of his bedtime rit-
ual. They were sad, and some days were better than others;
they had a sense that the weight of their grief was lifting.
3921_Ch10_277-320 05/06/14 11:08 AM Page 308
Families in Palliative and End-of-Life Care 309
Elise moved into family home
to provide support and help
Catherine
Dr. Brooks
Church: strong
support for family,
especially Robert
and Linda
Interdisciplinary
team: dietitian,
caring aide
MS support
group
Friends not
supportive; now
leaving Katie
out
School: failing
grades causing
distress
Travis
Linda
Ralph
Elise
Preschool:
does not want to
go; wants to
stay home
with mother
KatieAmy
University:
enjoying studies;
stressed by the
travel home
Robert
Work is
supportive: gives
Robert a break
from caregiving
FIGURE 10-3 Jones family ecomap.
Family Case Study: Garcia
Family—Living and Dying a
Good Death; Saying Hello
and Good-Bye
You are a nursing student in your final clinical placement. I
am your preceptor, a clinical nurse specialist (CNS) on the
palliative care team in a children’s hospital. You asked for
this placement as a final-year nursing student because you
have come across a number of situations during your stu-
dent experiences where you wished you knew how to talk
and be with a patient and her family when the patient was
dying. You realize that all nurses, from novice to expert
and in all areas of nursing practice, need to develop skills
in the area of death and dying. Please acquaint yourself
with the Garcia family genogram in Figure 10-4. Consider
what it would be like if you were the student working with
this family.
We have received a new consultation to meet with
Emma and her parents, Eduardo and Karina Garcia. We
learn that Emma is 7 days old and is a beautiful little
baby with a perfect little face, big dark eyes, and lots of
dark hair. Emma is on a ventilator because she has se-
vere congenital muscular dystrophy and is unable to
breathe on her own. Babies with severe disease, like
Emma, have a very limited life expectancy, typically only
a few weeks. Her severe muscle weakness means she is
not able to breathe on her own for any length of time.
We have been asked to meet with Emma and her family
because they have decided, in consultation with their
health care team, to withdraw ventilator support. As part
of the palliative care team, we have been invited to assist
(continued)
3921_Ch10_277-320 05/06/14 11:08 AM Page 309
310 Families Across the Health Continuum
Sara
4 yr
Garcia Family
West Coast
Married 8 yr
Markus
6 yr
Alejandra
54 yr
Gordon
52 yr
Carlos
55 yr
Elaine
52 yr
Karina
30 yr
Emma
7 days
Muscular
Dystrophy
Eduardo
32 yr
Forestry
East CoastMexico
FIGURE 10-4 Garcia family genogram.
Eduardo and Karina to decide how, when, and where the
withdrawal might occur.
Before meeting with this family for the first time, we re-
alize how important it is to prepare ourselves. We know
that we need to pause for a moment and consider how we
might begin this conversation with Eduardo and Karina. We
also want to ensure that we have in place whatever we
might need to facilitate this first meeting.
We make arrangements to meet with Eduardo and Ka-
rina in a quiet, private room where we will not be inter-
rupted. Pagers are turned off and other staff are covering
for us so that we will have time to sit with the parents and
really listen to what they have to say. Given that there will
be several challenging things to discuss, we invite the
neonatal intensive care unit (NICU) social worker, who al-
ready has a relationship with the family, to join us for this
meeting.
Before meeting the family we spend some time talk-
ing about different ways to begin the conversation with
the parents. There are as many ways to start this conver-
sation as there are clinicians. This is the beginning of
what we hope will be a therapeutic relationship during
one of the most difficult times a family can experience.
Eduardo and Karina need to know who we are. It is often
hard for parents to keep track of health care professionals—
who we are, what we do, and how we can be helpful.
This is especially true in highly emotionally charged situa-
tions. So typically we start with brief introductions. Some-
times, rather than starting the conversation by saying why
we are here, it is helpful to gain an understanding of why
the parents think we are meeting and then continue
from there.
We start the meeting by each introducing ourselves.
Then one of us says, “Tell us your understanding of why
we are meeting today.” To facilitate our connection with this
family, we also ask Eduardo and Karina to tell us about
Emma—not her medical condition, but what they have no-
ticed about her or experienced in their relationship with her
as parents. In answer to our query, one of the things Karina
tells us is that she thinks Emma has Eduardo’s eyes. Ed-
uardo has noticed that she follows Karina with her eyes
and he says, “She really knows her mom.”
We learn that after talking with both sets of grandpar-
ents (mostly by telephone as Eduardo’s family is in Mexico
3921_Ch10_277-320 05/06/14 11:08 AM Page 310
Families in Palliative and End-of-Life Care 311
where he and Karina met and Karina’s parents live across
the country), the health care team, and their priest, Karina
and Eduardo have indeed come to the decision that the
most loving thing they can do as parents is to withdraw
Emma’s ventilator and allow natural death. We encourage
them to discuss their concerns, fears, and hopes for the
time they have now with Emma. There is much silence
and tears as the parents try to put into words all the
thoughts swirling in their heads. They tell us that their
focus is on having Emma experience as much of normal
newborn life as she can. And they want to touch her and
care for her. They want her to spend time with her 4-year-
old sister, Sara, and 6-year-old brother, Markus; to be in
her car seat; to be bathed, cuddled, and have her diaper
changed by both her mom and dad; to be baptized; and
most of all to see the sun. We learn that it was the middle
of the night when Emma was born and then immediately
transferred from her small community to our tertiary urban
hospital 3 hours away, so she had seen the moon but not
the sun. Eduardo is a forestry worker and the family loves
to be outdoors. They cannot believe that one of their chil-
dren will never spend any time outdoors. Neither Karina
nor Eduardo had been able to hold Emma before she
was whisked away. Karina has held her in the NICU, but
Eduardo has been reluctant because of all the tubes. He
is feeling sad that her pervasive muscle weakness means
she cannot grab onto his finger the way Sara and Markus
did as babies and he is searching to find another way to
connect with Emma. Both parents express worry about
how to help Sara and Markus understand what is happen-
ing in a way that does not frighten them. Although both
Karina and Eduardo are committed to their decision, they
are afraid that Emma may suffer when the ventilator is
withdrawn. They are worried about watching her struggle
for breath. The parents ask us for a week to have these ex-
periences with Emma; they also want time for additional
family members to visit and to plan for withdrawal of the
ventilator.
Following our meeting with Eduardo and Karina, we
meet with the involved NICU staff members, who are quite
concerned with the proposal that we wait a week to dis-
continue the ventilator. This is not the way it usually hap-
pens and they worry the family will only become more
attached to Emma, finding it harder and harder to let her
go, or that something will change in Emma’s health status
that may lead to an earlier death than what the parents ex-
pect. We provide further explanation and facilitate a meet-
ing between the parents, Eduardo and Karina, and the
NICU staff. At the meeting, NICU staff members are able to
express their concerns and the family is able to respond, as
well as talk about their wishes. Hearing each others’ fears
and hopes is helpful and there is now agreement and sup-
port for the parents’ request. Eduardo and Karina under-
stand that it is possible something could happen
unexpectedly with Emma and, although everything possible
will be done to ensure that she is comfortable, the staff
would not provide cardiopulmonary resuscitation (CPR) if
her heart stopped.
Emma and her parents move into one of the private
family rooms in the NICU. Karina’s parents, Elaine and Gor-
don, who came to care for Sara and Markus in the family
home, bring them to stay in a nearby hotel. This proximity
enables them to visit often and to get to know the newest
member of their family. Before their first visit, we spend
time talking with Eduardo and Karina about how to prepare
the siblings for seeing Emma, as well as explaining similari-
ties and differences in how Sara and Markus may under-
stand what is happening. Another member of the team, a
child life therapist, spends time with Sara and Markus indi-
vidually and together to assess and support their under-
standing and coping with Emma’s illness. Eduardo and
Karina join some of the discussions and have some of their
own time with the child life therapist. They learn how
young children come to understand serious illness and
death and that Sara and Markus will likely have questions
about Emma for many years. They are happy about the
picture books and other resources on how to support their
children over time.
During the week, even in the midst of the technol-
ogy that is still needed to keep Emma breathing,
Eduardo, Karina, Grandma Elaine, Grandpa Gordon,
Sara, and Markus do all the things that families with
newborns usually do. The family is given the opportu-
nity to say hello and good-bye to their new family
member all at the same time. Eduardo holds Emma for
the first time and they take many, many pictures and
videos. They give Emma her first haircut and each save
a tiny lock of hair tied with a ribbon. Sara and Markus
each create a memory box with drawings, the locks of
hair, Emma’s hand and foot prints, and copies of the
photos. They also help the child life therapist make
molds of Emma’s hands and feet and of their own.
Eduardo’s parents arrive from Mexico and several close
family members and friends come to meet Emma and
witness her baptism in the hospital chapel. The list of
hopes and dreams for this time gets ticked off. Eduardo
and Karina also use this time to contact a funeral home
(continued)
3921_Ch10_277-320 05/06/14 11:08 AM Page 311
312 Families Across the Health Continuum
in their home community and make arrangements with
their priest for her wake and funeral.
One day we take Emma, her parents, her siblings,
and her grandparents outside to the hospital’s play gar-
den where it is beautifully clear and sunny with a gentle
breeze blowing. Hospital security has closed the garden
to other families and staff so it is intimate and peaceful.
Emma is able to feel the sun on her face for the first
time. The child life therapist is there to support Sara
and Markus. They both seem to enjoy this family outing;
running over to see Emma, giving her a kiss, and then
heading off to explore the sandbox and the swings be-
fore coming back again for a hug from their parents.
Eduardo and Karina ask if we think that Sara and
Markus really don’t understand the situation and that is
why they keep running off to play. The child life thera-
pist reassures them that this is a typical way for children
to cope and essentially they are just taking in what they
can handle at their own pace. The child life therapist
continues to follow the children’s lead in supporting
whatever they want to do and wherever they want to be
in the garden. A nurse from NICU stays close to Emma
to assist her to breathe while she is being held by her
parents and grandparents. Everyone relaxes and shares
stories about Karina’s pregnancy, the labor and delivery,
and the things they have learned about Emma the last
few days. We take more family pictures and video to
send to the rest of the extended family that night. To
our surprise, the parents feel so comfortable in the
garden that they ask if the ventilator can be discontin-
ued in the garden. We set about making this request
happen.
Eduardo, Karina, and Elaine meet with us, the neona-
tologist, the NICU CNS, and the NICU social worker; we
explain how we will keep Emma comfortable when the
ventilator is withdrawn. The family is reassured to learn
that there are medications that will ensure that Emma
does not struggle for breath and that we will not allow her
to suffer. Eduardo asks what it will be like when the venti-
lator is taken away. We are able to help them understand
that we do not know how long Emma will be able to
breathe without assistance, but it could be minutes to
hours; her breathing will slow, become irregular, and then
stop. Her color will change and she will feel cool. Eduardo
and Karina decide that they would like to be by them-
selves with Emma when she dies. Sara and Markus will
stay at the hotel with their grandparents and then may
come back to see Emma before she is taken to the fu-
neral home.
Both parents seem to be coping fairly well with the situ-
ation, with Eduardo taking on the role of the “strong one”
and Karina appearing more fragile. On the day of Emma’s
death, however, we are surprised at the reversal of roles, as
Eduardo looks disheveled and distressed while Karina has
done her hair and makeup; she’s wearing a special outfit
and seems “in control.” We had hoped for sun, but some-
how the weather seems more in keeping with the mood.
You comment to her parents that Emma has seen the
moon and the sun and now she is experiencing a true
West Coast day—foggy and gloomy! Emma is given some
medications so she won’t experience any pain or distress
and is settled with her parents in a secluded corner of the
garden. The priest performs last rites. The nurse removes
all of the tape and then the endotracheal tube while Emma
remains peaceful in her parent’s arms. We give the family
private space to be together but, along with other mem-
bers of the team (the priest, the NICU social worker, and
the NICU nurse with additional medications ready in case
Emma experiences any distress) are available in the play
garden if needed.
The play garden is on a busy street and we are con-
cerned that the level of traffic noise might be disturbing
to the family. Our concerns are heightened when the
siren starts at the nearby fire hall and the fire truck roars
past; Emma’s dad simply walks over to the fence and lifts
her up to see her first fire truck. Emma and her parents
walk the paths of the garden. Although there is still bustle
and noise around them, it is clear that Emma and her
family are in their own little world. Although they had op-
portunities to do “normal” family things over the last
week, this is the first time Emma and her parents experi-
ence each other without interference of machines, tubes,
wires, or other people.
Emma lives for another 2 hours. After she dies, her
parents continue to hold her for another hour. Both sets
of grandparents return with Sara and Markus to say
good-bye to Emma. Although the children were both told
what Emma would look and feel like after she died,
Markus in particular has many questions about whether
or not she is hungry, why she is cold, and if she is just
sleeping. Karina responds gently to all of their questions
to help them understand what has happened. When the
family is ready, Sara and Markus spend some time with
the child life therapist while a senior nurse, Patrick, part-
ners with you to help Karina and Eduardo prepare
Emma’s body. Patrick asks the parents if they have any
special rituals they would like to do and he also explains
about what needs to be done to meet the hospital rules.
3921_Ch10_277-320 05/06/14 11:08 AM Page 312
We let Karina and Eduardo know that they will receive a
letter with an appointment to see a geneticist in about
6 months. Because there was a genetic component to
Emma’s diagnosis, they may want to explore genetic
testing and understand any possible risks for future
pregnancies. A follow-up visit with the NICU neonatolo-
gist, CNS, and social worker will be coordinated to occur
on the same day to respond to any questions the par-
ents may have about Emma’s illness and death, as well
as to see how they are all coping. They are invited to
bring Sara and Markus at that time to meet with the
child life therapist.
We also let them know that the NICU has a formal
program where, with the parents’ permission, staff nurses
are supported to contact families at regular intervals in
the first year after the death and then send a plant on the
1-year anniversary. Karina and Eduardo express their ap-
preciation for such a program and say they can only
imagine how hard it will be on the anniversary of Emma’s
death; to know that the NICU staff who looked after her
will be thinking of them gives them great comfort.
Families in Palliative and End-of-Life Care 313
Everyone works together and though it is sad there is
also a peacefulness as Karina and Eduardo talk about
how happy they are to have done things the way they
wanted to. They thank you and Patrick and say how
grateful they are that the staff made it possible for Emma
to die in peace in such a beautiful setting; Karina and Ed-
uardo say that they will never forget what the staff did.
With one last kiss on Emma’s forehead, they leave for
home with the rest of their family.
Patrick assists you to complete all of the charting and
necessary paperwork related to Emma’s death. As Eduardo
and Karina decided against having an autopsy, Emma does
not need to go to the hospital morgue. Patrick calls the fu-
neral home and accompanies you as you carry Emma’s
body in a special softly colored and patterned bag to meet
the funeral home director at the staff entrance to the hos-
pital. You return to the unit and spend some time talking
with Patrick and me. We make sure that you have a way
home and a friend available to spend the evening with
you. I also contact your clinical coordinator to let her know
about the day’s events to make sure that you have some
ongoing support from the faculty. A few days later I invite
you to attend a special debriefing session to be held with
NICU staff.
As the funeral is held 3 hours away, you are unable to
attend. I suggest that you may want to send a note to the
family and offer to review it if needed (Box 10-8).
One Month Later:
That was not the end of our relationship with this family.
We make a home visit a month after Emma’s death
where we learn about the funeral. Karina and Eduardo
remark that they were very happy when two of their fa-
vorite NICU nurses came to Emma’s funeral. They tell us
about how moved they were when they received notes
from you and some of the other nurses, as well as a
card from NICU staff. They tell us that it helps them to
know she touched the hearts of those who looked after
her. We discuss how Karina and Eduardo are managing
as a couple and as parents. Eduardo is back at work;
Sara and Markus are back at preschool and school. Both
sets of grandparents have gone home. At this point we
draw an ecomap (Fig. 10-5) of the family’s community
connections, discuss their experiences of grief, and work
together to map out avenues of support available locally.
BOX 10-8
Example Note to Family From Student
Nurse
Dear Eduardo, Karina, Markus, and Sara,
It was my privilege to get to know all of you and to
meet Emma. She had the most beautiful expressive
eyes and so clearly looked at each of you when you
spoke to her. It was amazing to watch all of you to-
gether and to see Emma experience so much life in
such a short time. Your love for her and for each
other was evident in everything that you did.
I learned so many things about how families can
be together and live life to the fullest even in the
midst of such difficult circumstances. I know my ex-
perience with your family will make me a better
nurse with other families in the future. Emma and all
of you will forever remain in my thoughts.
All my best,
___________, Student Nurse
(continued)
3921_Ch10_277-320 05/06/14 11:08 AM Page 313
314 Families Across the Health Continuum
Friends
Preschool
Sara
4 yr
Markus
6 yr
Eduardo
32 yr
Karina
30 yr
7 days
Extended
family
School
Volunteer
work at Markus’
school
Best
friend
Palliative team
bereavement
support
Priest and
church
community
Work
Strongly attached
Moderately attached
Slightly attached
Very slightly attached
Negatively attachedFIGURE 10-5 Garcia family
ecomap.
SUMMARY
Nurses are in a unique position to help families
manage their lives when a loved one has a life-
limiting illness or faces an acute or sudden death.
Providing palliative and end-of-life nursing care
as you accompany a family during this intense pe-
riod is a privilege that should not be taken lightly.
The importance of the nurse-family relationship
in affecting and effecting positive outcomes can-
not be overstated; this relationship can make the
difference between a family who has good mem-
ories about their loved one’s death and a family
who experiences prolonged suffering because of
a negative experience. Open and trusting com-
munication; physical, psychological, and spiritual
support; and respect for the families’ right to
make their own decisions, as well as support to
facilitate these decisions, are essential compo-
nents of quality palliative and end-of-life care.
The following points highlight the concepts that
are addressed in this chapter:
■ Palliative and end-of-life care is inherently
family focused.
■ The principles of palliative care can be en-
acted effectively in any setting, regardless of
whether death results from a chronic illness
or a sudden/traumatic event.
■ All nurses need to develop at least basic com-
petencies in the area of death and dying.
■ Therapeutic nurse-patient and nurse-family
relationships are central to quality palliative
and end-of-life care.
■ Nurses who incorporate the principles of pal-
liative care are more effective in tailoring their
nursing practice and family interventions.
3921_Ch10_277-320 05/06/14 11:08 AM Page 314
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Chapter Web Sites
■ American Academy of Hospice and Palliative Medicine: http://www.
aahpm.org
■ American Association of Colleges of Nursing End-of-Life Nursing
Education Consortium (ELNEC) Project: http://www.aacn.nche.
edu/elnec
■ The American Geriatrics Society: http://www.americangeriatrics.
org
■ The Association for Children’s Palliative Care: http://www.act.
org.uk
■ Association for Death Education and Counseling: http://www.
adec.org
■ Canadian Hospice Palliative Care Association: http://www.
chpca.net
■ Canadian Organization for Rare Disorders: http://www.cord.ca
■ Canadian Network of Palliative Care for Children: http://cnpcc.ca
■ Canadian Virtual Hospice: http://www.virtualhospice.ca
■ The Compassionate Friends of Canada Resource Links: http://www.
tcfcanada.net
■ Complementary Medicine Education and Outcomes (CAMEO)
Program: http://www.bccancer.bc.ca/RES/ResearchPrograms/
cameo/default.htm
■ Education on Palliative and End-of-Life Care EPEC Project:
http://www.epec.net
■ End of Life/Palliative Education Resource Center: http://www.
eperc.mcw.edu
■ European Organization for Rare Diseases: http://www.eurordis.org
■ GriefNet.org: http://griefnet.org
■ Hospice and Palliative Nurses Association: http://www.hpna.org
■ Institute of Medicine of the National Academies: http://www.iom.
edu
■ National Hospice and Palliative Care Association: http://www.
nhpco.org
■ National Organization for Rare Disorders: http://www.
rarediseases.org
■ Promoting Excellence in End-of-Life Care (tools): http://www.
promotingexcellence.org
■ Registered Nurses’ Association of Ontario (Best Practice Guidelines):
http://rnao.ca/bpg
■ World Health Organization: http://www.who.int/cancer/
palliative/definition/en
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321
Trauma and Family Nursing
c h a p t e r 11
Deborah Padgett Coehlo, PhD, C-PNP, PMHS, CFLE
C r i t i c a l C o n c e p t s
■ Trauma is a key experience affecting the family system.
■ The threat or fear of death or serious injury is a salient feature of trauma.
■ Post-traumatic stress disorder (PTSD), which is a response to trauma, is more likely to develop when resiliency traits
are lacking.
■ PTSD can be acute or chronic and can occur months, even years, after a disaster or traumatic event such as war.
■ The Ecological Systems Theory can guide nursing assessment and interventions to help families dealing with trauma.
■ When one or more family members are traumatized by an experience, all family members and family relationships
can be affected.
■ The more severe the trauma an individual family member suffers, the more likely the other members of the family
are to suffer secondary trauma.
■ The family response to trauma of one or more of its members cannot be understood or treated by focusing on
individual family members alone. Family members can provide key contextual information about past traumatic
events and experiences that help explain current responses.
■ Community systems can prevent, treat, and measure negative outcomes to traumatic events. If community agencies
are not well trained and prepared, communities will suffer.
■ Larger political and social systems can influence and be influenced by individual, family, and community trauma. If
nations experience severe trauma, they, as a whole, show signs of PTSD.
■ Nursing focuses on the individual, family, community, and societal reactions to trauma in order to optimize positive
outcomes and prevent or treat negative implications.
Trauma has been an increasing area of attention
across the field of mental health for the past two
decades. Between the advanced understanding of
brain function and general physiology, and the
mind and body response to severe and/or prolonged
stress; and the increase in trauma experienced by
families through war, natural disasters, and family
violence, the need to understand, prevent, treat, and
monitor the effects of trauma on individuals and
families has never been more vital. Further, the
effects of trauma transcend individuals and fami-
lies, but also affect communities, and the broader
society. Trauma influences future generations as
the effects influence individual family genetics,
and community and societal cultures. The negative
effects of trauma are most profound during early
3921_Ch11_321-350 05/06/14 11:10 AM Page 321
childhood development, touching every domain of
development, with the potential of negative devel-
opmental outcomes in adulthood, such as higher
rates of mental illness, unemployment, and failed
relationships. The diagnosis of post-traumatic stress
disorder (PTSD) has grown significantly over the
past decade, as well as the understanding of differ-
ences in symptoms across developmental ages and
stages. Whereas the key symptoms of reexperienc-
ing the trauma through painful memories and
nightmares, hypervigilance, and emotional instabil-
ity are common to adults, children are more likely
to react with withdrawal and mood irregularity.
These symptoms cross ethnic groups and time. The
number of individuals with PTSD in turn affects
communities. Larger cultures and societies shift
as the number of trauma victims grows, adding
other negative consequences, including poor health,
higher rates of other mental health disorders, and
an increase in family violence. The care of trauma
in families, therefore, centers around preventing
trauma when possible, and when not preventable,
working toward positive rather than negative out-
comes, building resiliency traits in individuals and
families, and helping individuals and families work
toward understanding the positive meaning trau-
matic events can have on all of us. For example,
families who experience trauma together, such as
those experiencing natural disasters or terrorism to-
gether, have a stronger connection to each other
than those who never had these experiences (Ozer,
Best, Lipsey, & Weiss, 2003). This chapter consid-
ers developing knowledge about trauma and nurses’
key role in the field of trauma and emphasizes the
importance of preventing, treating early, and en-
couraging resilience and the ability to make mean-
ing out of negative events. This chapter also stresses
an understanding of secondary trauma, or the neg-
ative effects of witnessing trauma of others, whether
that other person is a stranger, family, or a patient
of a nurse. This discussion is particularly salient for
nurses, because they are some of the most likely
professionals to encounter traumatized victims in
their everyday practice.
The American Psychological Association began
to categorize symptoms of PTSD in 1980. Since
that time, researchers and clinicians have identified
the complexity of this disorder, and the lifelong,
intergenerational impact of repeated and pro-
longed trauma experienced by individuals, families,
communities, and societies. PTSD was a diagnosis
first recognized in 1980. Since this publication,
research has attempted to clarify and expand the
diagnosis to cover different categories of trauma,
such as combat, horrific accidents, and child abuse;
different content, such as domestic violence, natu-
ral disasters, and war; and different cultures, such
as genocide victims (Dyregrov, Gupta, Gjestad, &
Mukanoheli, 2000) and victims of natural disasters
across cultures and across time. The DSM-IV and
DSM-IV-TR included PTSD as a subcategory
under anxiety disorders, including three categories
of symptoms (APA, 2000; McNally, 2004):
1. Reexperiencing the trauma
2. Avoidance and numbing
3. Increased arousal
The DSM-5 has taken PTSD out of the category
of anxiety and developed a separate category titled
Trauma and Stressor Related Disorders (Friedman,
Resick, Bryant, Strain, Horowitz, & Spiegel, 2011;
Schmid, Petermann, & Fegert, 2013). The scope has
been expanded to include both experiencing a trau-
matic event and witnessing or repeatedly hearing
about a traumatic event. Further, the DSM-5 has
included four categories of symptoms (APA, 2013):
1. Intrusion of thoughts about the trauma
2. Avoidance of discussion or other stimulus
reminding the person of the trauma
3. Increased arousal or sensory sensitivity
4. Negative cognitions and moods
Today, it is estimated that up to 10% of the gen-
eral population across the world meets the criteria
for a diagnosis of PTSD, with areas experiencing
war or severe natural disasters experiencing the
highest rates. When further divided between geo-
graphical areas, ages, and genders, the prevalence
rates vary with risks higher for women and adoles-
cents, and lower in Asian countries (U.S. Department
of Veterans Affairs, 2007). These rates, however,
are lower when veterans are separated out of the
general population. The National Vietnam Read-
justment Study of 30,000 veterans of this war found
that 31% of men and 27% of women who partici-
pated in the Vietnam War had a lifetime prevalence
of PTSD (Kulka et al., 1990). When evaluating
11,441 veterans from the Gulf War, only 10% were
found to have symptoms consistent with PTSD
(Kang, Natelson, Mahan, Lee, & Murphy, 2003).
Veterans returning from Iraq and Afghanistan ap-
pear to be following this pattern, with a current
322 Families Across the Health Continuum
3921_Ch11_321-350 05/06/14 11:10 AM Page 322
prevalence rate for PTSD of 13% (Tanielian &
Jaycox, 2008). When considering children and ado-
lescents, it is important to note that most PTSD is
caused by (1) abuse and neglect across time, (2) wit-
nessing violence within the home and/or neighbor-
hood, and (3) experiencing traumatic events such
as motor vehicle accidents and natural disasters
(Salmon, Meiser-Stedman, Glucksmann, Thompson,
Dalgleish, & Smith, 2011).
The number of studies on individual trauma and
outcomes has increased in the past decade, as has
awareness that PTSD is not limited to individuals,
but rather affects individuals, families, communi-
ties, and societies. The understanding of the polit-
ical and societal influences on the diagnosis and
treatment, and continued research in this area, ex-
plains in part the continued need to explore trauma
and the relationship to family health. The extent of
damage to physical and mental health caused by
trauma has now been realized. This chapter uses
the Ecological Systems Model (Bronfenbrenner,
2005) to explore current understanding of risk and
protective factors of PTSD, identify those experi-
encing symptoms, and discuss treatment strategies
to reduce symptoms and enhance recovery. Family
nurses are in a key position to understand, recog-
nize, prevent, and treat trauma at multiple levels.
Case studies at the conclusion of this chapter illus-
trate the complexities of trauma and its effect on
all family members.
THEORY APPLIED TO PTSD
Trauma is treated differently now than it was in the
past. Historically, health care practitioners consid-
ered trauma to be a form of hysteria, meriting
ineffective treatments such as hysterectomies. Cur-
rently, the approach recognizes the modern under-
standing of trauma as a complex stress disorder
with a number of underlying theories applicable.
For purposes of this book, we delve into PTSD
using the Ecological Theory (Bronfenbrenner,
1984, 1995: Bronfenbrenner & Lerner, 2004) as
the underlying model to guide practice. The Family
Systems Theory likewise is helpful.
Ecological Theory
In this model, Bronfenbrenner identifies four
systems that interact together: the microsystem,
mesosystem, macrosystem, and exosystem. He later
added the system of time, or the chronosystem
(Bronfenbrenner, 1996), to describe the impact
of history and time on individuals, families, com-
munities, and societies. Time is integrated as
a concept within each of the four other ecological
systems. The understanding of the impact of
trauma on a micro to exosystem level helps practi-
tioners and policy makers understand the intercon-
nections between trauma and abuse to individuals,
families, communities, and societies, and the im-
pact of that trauma across time, geographical and
cultural systems, and generations. Trauma tends
to repeat itself if nothing intervenes to stop the
pattern. Interventions intended to stop and/or
alter these patterns are much more effective when
chosen and implemented with the complexity
and interconnections between systems in mind.
See Figure 11-1 for a visual portrayal of Bronfen-
brenner’s Ecological Theory.
Microsystem
The microsystem describes the individual and the
systems within that individual, including physiolog-
ical (i.e., respiratory, cardiovascular), developmen-
tal, and psychological (i.e., sensory perceptions,
memory). The role of trauma in violating and
damaging physical and mental well-being and neg-
atively affecting development of children and adults
is no longer questioned. The negative impact of
trauma on individuals ranges from interference with
healthy development of attachment to physical and
mental illness across the life span (Afifi, Boman,
Fleisher, & Sareen, 2009). Although understanding
the impact of trauma on individuals is important to
understanding family trauma, care of these individ-
uals in isolation is less effective than providing care
within the context of the family. The microsystem
provides a beginning knowledge to family trauma,
but the mesosystem adds a deeper understanding.
Mesosystem
The effect of trauma on any one individual within
the family has a significant impact on family devel-
opment and family functioning. As mentioned ear-
lier, the DSM-IV-TR (APA, 2000) expanded its
definition of trauma from an individual perspective
to a broader definition that included experiencing,
witnessing, being confronted, or being informed
about an act of violence against others (APA, 2000).
This broader definition has been supported by the
Trauma and Family Nursing 323
3921_Ch11_321-350 05/06/14 11:10 AM Page 323
DSM-5, with increased separation between devel-
opmental stages and reactions to trauma (APA,
2013). This definition includes trauma experienced
by families directly or witnessed by other family
members, expanding the experience beyond the
micro level to the meso level of reaction. For example,
children’s reactions to trauma and their resiliency
against PTSD are shaped in part by family experi-
ences and reactions. Family members witnessing
trauma can and do experience symptoms of PTSD.
The act of witnessing includes direct observation
and hearing about traumatic events repeatedly
from family members. Further, family members’
reactions to a traumatic event have a direct impact
on whether or not other family members will expe-
rience symptoms of PTSD. For example, if parents
cannot regulate their own reactions and cannot
support the child because of their own PTSD, the
324 Families Across the Health Continuum
CHRONOSYSTEM
Cha
nges
in person
s or environment over time
U
ne
xp
ec
te
d
de
at
h
of
p
ar
en
t B
roa
d i
de
olo
gy,
law
s, an
d cust
oms of one’s culture, subculture, or social class
MACROSYSTEM
Extended Family
EXOSYSTEM
MESOSYSTEM
MI
CRO
SYSTEM
Friends
of
family
Neighbors
Mass
media
Family Day-care
center
Community health
and
welfare services
Doctor’s office
Child
Legal
services
Workplace
Church,
synagogue Peers
School
board
Sociohistorical Conditions
D
isasters W
ar
s
Critical events (e.g., parental divorce)
School Neighborhood
play area
Church
School
FIGURE 11-1 Bronfenbrenner’s Ecological Systems Model.
3921_Ch11_321-350 05/06/14 11:10 AM Page 324
child is at higher risk for developing symptoms of
PTSD. Likewise, if a parent lacks support and
positive coping strategies, he is less likely to be able
to provide support to the child.
Macrosystem
Trauma at the macro level includes all trauma
within a community. This level of trauma not only
influences individuals (micro) and families (meso),
but has an impact on how a community reacts and
recovers from trauma. Over the past two decades,
the growing disparity between mental health and
access to mental health services within a commu-
nity has been well documented (National Institute
of Mental Health, 2008). Traumatic events within
schools, for example, have increased the awareness
of the need for more in-depth and comprehensive
mental health services to prevent these events
and to be available to treat the victims following
these events. Schools have been identified as key
community systems that can provide both preven-
tion and treatment services. Over 60% of schools
already attempt to address trauma at a community,
or macrosystem, level through prevention services,
and community preparedness such as town meet-
ings and educational programs, provision of tem-
porary food and shelter following a disaster,
counseling services, and/or behavioral programs
(Taylor, Weist, & DeLoach, 2012). Working with
schools when it comes to trauma care improves
outcomes, especially for traumatized youth (Cohen
et al., 2009).
Exosystem
The exosystem includes the larger culture and gov-
ernment or laws and justice within a culture. The
exosystem is touched by and touches on individu-
als, families, and communities. For example, the
cultural reactions and legal responses to a natural
disaster have grave implications for individuals,
families, and communities. Consider the response
by the government to Hurricane Katrina in 2005,
with the delays and the disorganization during
and after the disaster. These gaps in services were
believed to be a contributing factor to the high
rates of PTSD in survivors (Mills, Edmondson, &
Park, 2007). Researchers have explored the dysreg-
ulation and hyperarousal of individuals during this
time, and have found that similar processes can and
do occur at a larger, systemic level. Judith Warner,
in a 2010 New York Times article (Warner, 2010),
observed that the large-scale dysfunction of federal
regulatory systems, including the banking melt-
down, collapse of the housing market, and the
failure of levees during Hurricane Katrina, resulted
in the United States as a country struggling with
symptoms of PTSD for several months after the
hurricane hit the shores of Louisiana.
Family Systems Theory
The Family Systems Theory focuses on the inter-
action between family members, and the impact of
an individual’s health and behavioral responses on
other family members, as well as other family
members’ reaction and health impact on individu-
als. The metaphor of a wind chime is commonly
used to describe the Family Systems Theory, with
one chime being struck by other chimes to make
music or cacophony. The wind flowing through
the wind chimes represents the stressors that flow
through every family. The wind can be a gentle
breeze, or low stress level, or higher winds, similar
to high stress and less controlled stress levels. The
Family Systems Theory, when considered through
an ecological looking glass, can help explain the
impact of trauma within and surrounding families.
The remainder of the chapter describes the types
of trauma that individuals, families, communities,
and societies at large face currently, along with
implications for family nurses.
EARLY TRAUMA
Early trauma shapes early attachment to others,
developmental progress, and early brain develop-
ment. In the context of the Ecological Model, the
impact of trauma in the individual child (micro) is
strongly influenced by the responses of the
parent(s) (macro) level.
Attachment
Because early trauma has been shown to interfere
with healthy development of attachment, attach-
ment theories are used as a basis of research and
understanding. Early attachment disorders are
commonly linked to later issues with developmen-
tal success and physical and mental well-being.
Bowlby, an early researcher and theorist in the area
of attachment, identified the importance of early
Trauma and Family Nursing 325
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attachment and the effect on later personality de-
velopment, interpersonal relationships, self-esteem,
and self-regulation of emotions, daily function, and
behavior (Bowlby, 1973). Normally, an infant trusts
caregivers to provide a safe environment to explore.
When trauma occurs, such as abuse and severe neg-
lect from caregivers, and when that trauma is re-
peated and/or severe, an infant loses the basic
coping and adaptation skills of compartmentalizing
threats to self, therefore becoming disorganized,
disconnected, dysregulated, isolated, and later strug-
gling with separation between reality and fantasy.
Heller and LaPierre (2012), in describing their
developmental trauma theory, categorized this
early traumatic interference with attachment by de-
scribing five core areas of concern: (1) interference
with connection to others, (2) lack of attunement
or ability to recognize physical and emotional
needs, (3) lack of trust in caregivers and the envi-
ronment, (4) difficulty with boundaries between
self and others, and (5) difficulty developing a sense
of love and healthy sexuality. Table 11-1 illustrates
the Neuroaffective Relational Model with the Five
Core Needs developed by Heller and LaPierre.
More specific symptoms of trauma-induced attach-
ment disorder include the following:
■ Absence of self-regulation—inconsistent and
unpredictable patterns of eating and sleeping
■ Lack of response to caregivers—poor eye
contact, lack of response to consoling measures
■ Lack of response to the environment—inability
to pretend play, interact with toys, and/or
experience shared pleasure with others (Heller
& LaPierre, 2012; Joubert, Webster, &
Hackett, 2012)
If untreated, children experiencing trauma strug-
gle in cognitive, emotional, and social development
(Heller & LaPierre, 2012; Joubert et al., 2012;
Perry & Pollard, 1998).
Developmental Trauma Theory
The developmental trauma theory (Heller &
LaPierre, 2012) describes the survival strategies in-
dividuals (micro level) learn to cope with trauma;
it expands the understanding of the negative impact
of trauma on attachment. These coping strategies
interfere with healthy development. For example,
whenever an individual experiences a severe threat,
a fight-or-flight response is activated. When re-
peated trauma occurs, a state of constant fear devel-
ops causing distinct physiological and psychological
changes. At the core, stress hormones from the
adrenal glands are released stimulating the sympa-
thetic nervous system. The neurological system, in
response, alerts the brain to stay in survival mode.
Because this system is activated continuously when
repeated trauma occurs, the individual’s ability to
feel safe is threatened, resulting in a state of con-
stant hyperarousal. The sympathetic nervous sys-
tem eventually becomes overwhelmed, leading
to an abrupt shift to the parasympathetic system,
and the individual shuts down, withdraws, becomes
numb, disassociates, or falls into sleep. Sleep, eating,
and digestive patterns are affected, and excitable
behavior builds again with the next remembered or
experienced trauma. Emotions range from hyper-
stimulated (i.e., hysteria or excessive, inconsolable
crying) to numbness (no reaction to the environ-
ment). Without resolution, the individual develops
a state of fear, and gradually loses the ability to
regulate emotional and autonomic reactions. If
uninterrupted, the young child will develop sec-
ondary complications, including anxiety, shame,
isolation, mood dysregulation, and uncontrolled
anger or explosive outbursts (Alisic, Jongmaks,
Van Wesel, & Kleber, 2011; Salmond, Meiser-
Stedman, Glucksmann, Thompson, Dalgleish, &
Smith, 2011).
As a child develops into adulthood, he may try
to adapt to those feelings by abusing substances or
avoiding emotions (Dansky, Byrne, & Brady, 1999;
326 Families Across the Health Continuum
Table 11-1 Neuroaffective Relational Model Five
Core Needs
Core Need Description
Connection Lack of ability to form healthy
connection with caregivers or
significant support people
Attunement Lack of ability to recognize physical
and emotional needs
Trust Lack of ability to trust others
Boundaries Difficulty setting healthy boundaries
Deep sense of Inability to form deep loving
love and sexuality relationships, and, as adults,
connect deep love with healthy
sexuality
Source: Heller & LaPierre, 2012.
3921_Ch11_321-350 05/06/14 11:10 AM Page 326
Heller & LaPierre, 2012). The underlying fear re-
mains; the threat to self and to the ability to survive
is not over. Symptoms emerge over time, including
the following (Dansky et al., 1999; Glaser, 2000;
Heller & LaPierre, 2012; Perry & Pollard, 1998):
■ Lack of affect
■ Feelings of shame
■ Separation from others
■ Avoidance of emotionally disturbing situations
or people
■ Overintellectualizing and avoiding of emotions
■ Lack of attunement or awareness of bodily
and related needs
■ Fear of being alone while at the same time
feeling overwhelmed by others
■ Fear of death and illness
■ Fear of their own anger
■ Fear of intimacy
■ Strong need to control
■ Desire for altered states and disassociation
■ Cognitive impairments, including difficulty
with auditory processing, memory, and
attention
■ Feelings of helplessness
■ Hypovigilance or hypervigilance
Physical symptoms of prolonged and repeated
trauma in childhood include the following:
■ Disrupted sleep
■ Eating disorders
■ Panic disorders
■ Obsessive-compulsive disorders
■ Rage
■ Depression
■ Addiction
■ Cardiovascular disorders
■ Autoimmune disorders
A pattern emerges across time. Figure 11-2 illus-
trates the developmental pattern of maladaptation
to early trauma.
Studies on the impact of war, terror, and unex-
pected natural disasters on children have resulted
in the identification of the term disaster syndrome
(Smith, 2013). This syndrome is described as a
combination of symptoms of PTSD—including
anxiety, dissociation, depression—and grief from
loss of people, support, routines, and assumptions
regarding safety and regularity, and parental re-
sponse. Parental response is influenced by parents’
prior diagnosis of mental illness, prior coping
strategies, and number of past traumatic experi-
ences. Children respond to their family members’
emotional and physical changes related to trauma.
When an individual (micro level) experiences
trauma over time, his interaction with others (meso
level) and his ability to interact in a functional man-
ner with his community (macro level) are altered.
The human desire for regulation of the auto-
nomic nervous system, with a return to balance, is
strong. Individuals are highly motivated to find this
balance, and will pursue strategies to achieve this
goal through either positive measures (e.g., healthy
patterns of sleep, eating, exercise, meditation or
yoga, and spiritual connection), or negative meas-
ures (e.g., drug-seeking behavior, obsessive think-
ing patterns, or avoidance patterns) (Dansky et al.,
1999). These negative patterns interfere with every
stage of development, primarily altering cognitive,
emotional, communication, and social domains.
Although young infants cannot consciously think
about their reactions to trauma, their emotions and
related autonomic reactions are affected in a meas-
urable way (Heller & LaPierre, 2012). Infants have
bottom-up responses, or responses starting with
brainstem or autonomic reactions to external
threat, moving up toward emotional responses.
Adults, in contrast, experience trauma initially from
thought, or the cortex of the brain, and move down
to emotional response, and finally autonomic or
brainstem reaction. This is considered top-down
reaction. Another important differentiation be-
tween infants and adults is that infants tend to have
a broad interpretation of experiences, whereas
Trauma and Family Nursing 327
Negative coping
Dysregulation
Mis-attunement
Distress
Trauma
FIGURE 11-2 Developmental pattern of maladaptation
to early trauma.
3921_Ch11_321-350 05/06/14 11:10 AM Page 327
adults are able to separate experiences and feelings
between experiences. The difference in reaction is
caused by the difference in development of path-
ways from the frontal cortex to the brainstem as
the brain develops across time. The pathways are
reinforced by experiences and interactions in the
environment. Figure 11-3 illustrates bottom-up
and top-down responses to trauma.
This variance in response to trauma is important
to understand: adults who experience trauma can
make a distinction between different experiences in
their lives, and as a result feel badly about a specific
experience; infants and young children cannot dif-
ferentiate between experiences and therefore when
they experience trauma, they tend to think they are
bad (Heller & LaPierre, 2012). Young children
and adults, however, if left untreated following a
trauma, can regress back to thinking and feeling
they are bad as a global response to trauma.
Early Trauma and Brain Development
The understanding of the impact of early trauma on
brain development has led to detailed study of the
impact on brain development and plasticity, or the
ability of the brain to recover from injury. When
considering trauma or major stress, the body is gov-
erned by two main systems: the neurological system
and the endocrine system. These two systems ensure
survival of the individual through stimulation of the
sympathetic nervous system when the individual is
threatened, and the parasympathetic nervous system
when the individual is safe and relaxed. Hans Selye,
a renowned theorist on stress, identified the connec-
tion between the hypothalamus, the pituitary gland,
and the adrenal glands, now commonly referred to
as the HPA axis (Selye, 1976). To summarize this
process, the hypothalamus links the nervous system
to the pituitary system, which secretes hormones
that regulate homeostasis. If homeostasis is not
reached, the adrenal glands secrete the stress hor-
mones, epinephrine and norepinephrine. These
hormones stimulate the sympathetic nervous system,
and the result is increased heart rate, dilation of
pupils, relaxation of bronchial tubes, increased ten-
sion and circulation of blood to large muscles, and
initial stimulation of the frontal cortex through a
surge of dopamine, followed by bypassing the frontal
cortex to the amygdala.
This bypass process encourages rapid action
based on the previous experience of threats, and the
assumption that the same threat has occurred and
the same action for survival is needed. When this
process is stimulated repeatedly and without reso-
lution, the connection between the limbic system—
where automatic actions based on emotions and
repeated actions rather than thought occur—and
the cortex—or the thinking part of the brain that
includes judgment, creativity, and prediction of ac-
tion on future consequences—is pruned. When the
connection is pruned, sensory perception becomes
scattered and disorganized. By bypassing the
frontal cortex, the individual exchanges accuracy,
judgment, and the ability to learn, for speed. The
bypassed frontal cortex provides the individual
with the executive functions of detailed assessment,
regulation of emotion or thought, inhibition of
inappropriate responses, internal speech, and
problem-solving skills. Over time, an individual
constantly facing threat through trauma develops
a fearful identity, avoids relationships due to pre-
vious threats, has uncontrolled emotional outbursts
328 Families Across the Health Continuum
Thought
Top-down response to trauma
Emotion
Thought
Bottom-up response to trauma
Emotion
FIGURE 11-3 Top-down and Bottom-up
reaction.
3921_Ch11_321-350 05/06/14 11:10 AM Page 328
or withdrawal, disassociates from the present,
and/or experiences depression. The hippocampus,
which is key in neuroplasticity or the ability to gen-
erate new neurons and new neuron pathways
(known as neurogenesis), is impaired. This process
explains why many who experience prolonged and
repeated trauma struggle with cognitive impair-
ments, such as poor short-term memory, difficulty
with concentration, difficulty learning new skills,
and poor sensory integration, especially auditory
processing (Anda et al., 2006). This process has
been found to be more severe in both children and
adults experiencing relational trauma, or trauma in-
flicted by relatives (meso level), than those experi-
encing trauma from inanimate objects (e.g., motor
vehicle accidents) (Heller and LaPierre, 2012).
This process is most damaging when the trauma
experienced occurs early in life, and continues
throughout childhood, causing an initial and pro-
longed damage to normal brain development
(Alisic, Jongmaks, Van Wesel, & Kleber, 2011;
Anda et al., 2006). For family nurses, it is important
to assess the start and duration of any family trauma
occurring to a child or young adult.
Early Childhood Trauma Creates
Understanding of Adult Trauma
The impact of early trauma and the negative
long-term outcomes has led to further study of
the impact of childhood trauma on adult health.
The Adverse Childhood Experiences Study
(1996) provided landmark evidence that early
trauma does indeed have negative consequences
for adult health. This study was conducted as a
collaboration between Kaiser Permanente and
the Centers for Disease Control and Prevention
(CDC), and entailed surveying 11,000 individuals
across a decade, linking adverse childhood expe-
riences with adult physical and mental health
variables. The results revealed a relationship be-
tween the number of adverse childhood experi-
ences and the number of comorbid outcomes,
including adulthood depression, panic disorder,
substance abuse, sexual promiscuity, relationship
problems, and domestic violence (Anda et al.,
2006). Figure 11-4 illustrates the relationship be-
tween adverse childhood experiences and adult
comorbid conditions. The findings of this hall-
mark study led to a more in-depth understanding
of the cumulative effect of repeated and numerous
traumas experienced during childhood, and the
effect on brain development.
Clearly, understanding early trauma and the neg-
ative impact on children and development allows
professionals to grasp better the impact of traumatic
events on adults. Studies have found that resiliency
is one factor that determines which adults will con-
tinue to suffer from childhood trauma. Of interest
is that the number of traumatic events is found to
be consistently higher in men, but women have
a higher incidence of PTSD following trauma.
This is consistently true for civilian populations
across geographical locations (Terleggen, Strebe, &
Kleber, 2001). One theory is that women experi-
ence sexual assault and traumatic abuse from male
partners, supporting the idea that relational trauma
is more traumatic and more difficult to cope with
than inanimate or nonrelational trauma (Seedat,
Stein, & Carey, 2005).
Resiliency
Through the improved understanding of childhood
trauma and related reactions, we now understand
more fully the concept of resiliency, or why some
who experience the same or similar event will adapt
without any measure of physical or emotional dam-
age, while others become severely and chronically
Trauma and Family Nursing 329
M
e
a
n
n
u
m
b
e
r
o
f
c
o
m
o
rb
id
o
u
tc
o
m
e
s
0 1 2 3
ACE score
4 5 6 7–8
6
5
4
3
2
1
0
FIGURE 11-4 Relationship between adverse childhood
experiences and comorbid conditions. Adverse
childhood experiences include verbal, physical, or
sexual abuse, as well as family dysfunction (e.g., an
incarcerated, mentally ill, or substance-abusing family
member; domestic violence; or absence of a parent
because of divorce or separation). (Source: Anda, Felitti,
Bremner, Walker, Whitfield, Perry,…Giles [2006]. The enduring
effects of abuse and related adverse experiences in childhood: A convergence
of evidence from neurobiology and epidemiology. European Archives of
Psychiatry & Clinical Neurosciene, 256, 174–186.)
3921_Ch11_321-350 05/06/14 11:10 AM Page 329
disabled. The term resilience for purposes of this
chapter refers to individuals who (1) have been
exposed to a significant threat or adversity, and
(2) manifest positive adaptation, or absence of
poor adaptation, in spite of the adversity (Luthar,
Cicchetti, & Becker, 2000). Research has focused
on identifying factors or characteristics that are
consistently found in those individuals found to be
resilient. The factors most commonly cited as re-
siliency qualities include the following (Rutler,
1987; Williams, Lindsey, Kurtz, & Jarvis, 2001;
Overland, 2011):
■ Social connectedness and positive supportive
relationships
■ Competent parenting
■ Absence of mental illness in caregiver(s)
■ Easy to moderate temperament
■ High intelligence
■ Ego-resiliency, or the acquisition of a strong
sense of self across the life span with or with-
out trauma (Philippe, Laventure, Beaulieu-
Pelletier, LeCours, & Lekes, 2011)
■ Compassion
■ Optimism
■ Gratitude
■ Determination
■ Meaning and purpose in life
■ Caring for self and attuning to own needs
■ Trusting others to help
■ Internal locus of control
■ High self-esteem
■ Strong self-efficacy
■ Vicarious resiliency (Hernández, Gangsei, &
Engstrom, 2007)
Research on resiliency continues. For example,
Philippe et al. (2011) investigated 118 clients from
an outpatient clinic in Canada, and found that if
ego-resiliency traits were present before a trau-
matic event, then negative outcomes, including
anxiety, depression, and self-harm, decreased by
as much as 30%. While resiliency characteristics
often precede the traumatic experience, this is not
always the case. The question remains as to how to
build resiliency in individuals facing trauma.
Williams et al. (2001) completed an in-depth qual-
itative case study to explore why some high-risk
teens who had run away from traumatic homes
fared well, whereas others fared poorly. These au-
thors found that those individuals who developed
resiliency traits after the trauma recovered faster
and shifted to a positive, goal-directed life. Re-
siliency traits therefore should be assessed by family
nurses to determine those that were present before
the trauma, and reinforced, versus those that are
lacking and need to be taught and supported. Re-
siliency can buffer the negative impacts of trauma
on the individual’s brain development.
FAMILY TRAUMA
Families experience trauma as a family and through
individual members. This section discusses both
(1) family trauma through disasters and war; and
(2) individual experiences of trauma and their effect
on family members. Each member of the family
experiences trauma differently, with different
symptoms, reactions, and needs for recovery. For
example, both parents and children experience sim-
ilar symptoms of PTSD, but adults are more likely
to experience reexperiencing the event through
nightmares and flashbacks, whereas children are
more likely to avoid similar experiences (e.g., riding
in a car after a car accident) or talking about the
event. Both children and adults experience hyper-
arousal, or the HPA axis response to stress (Heller
& LaPierre, 2012). When this occurs, parenting
often becomes overwhelming as children overreact
to environmental stimuli, and parents overreact to
the stressors of parenting. Each family member in
turn can easily be misdiagnosed as depressed, anx-
ious, or having attention-deficit hyperactivity dis-
order (ADHD) and the opportunity for effective
and comprehensive treatment is therefore lost. The
National Center for PTSD (2010) has identified
seven key areas that affect family functioning when
one or more members are diagnosed with PTSD:
1. Increased sympathy by family members,
which may provide support for the family
member with PTSD or prolong feelings of
victimization.
2. Increased negative feelings about the person
with PTSD. These feelings are often trig-
gered by changes in the person with PTSD,
from changes in mood regulation, to depres-
sion, to explosive outbursts.
3. Avoidance is a common reaction by individ-
uals with PTSD and by family members.
Family members often circumvent talking
about anything related to the trauma, and
330 Families Across the Health Continuum
3921_Ch11_321-350 05/06/14 11:10 AM Page 330
may dodge other topics hoping to avoid
angry outbursts. Individuals with PTSD
tend to avoid social situations due to fear of
not fitting in or being questioned about the
trauma. This, in turn, leads to social isola-
tion of all family members as they try to
support the individual with PTSD.
4. Depression is common among individuals
with PTSD and their family members. The
longer the symptoms of PTSD last, the
higher the risk for depression in family
members.
5. Anger is common among family members,
as they struggle to cope with changes in the
person with PTSD and anger that expecta-
tions are not being met.
6. Guilt is common for family members as they
feel helpless to change negative family func-
tioning and find themselves feeling angry
about the individual’s illness.
7. Health problems increase in individuals with
PTSD and their family members, including
substance abuse, reduction in healthy immune
response, and negative effects of poor eating
habits, poor sleep, smoking, and lack of
healthy exercise.
These outcomes can leave parents feeling inad-
equate, and spouses feeling angry, guilty, and dis-
illusioned. Nurses are often at the forefront of
trauma care, as they encounter family members
during traumatic events from war, natural disasters,
family violence and abuse, and severe illness or
unanticipated accidents.
Families Affected by War
Since the turn of the century, the nature of war has
changed dramatically. Warfare in the 21st century
rarely involves confrontations between professional
armies. Instead, wars typically are fought as grind-
ing struggles between military personnel and civil-
ians, or groups of armed civilians in the same
country in a city environment rather than in distant
battlefields. As a result, civilian fatalities from bat-
tles fought in towns and cities have increased to 90%
of the casualties of war in the 21st century, as com-
pared to only 5% in the early 1900s. Worldwide,
the caseload of refugee children has grown from
2.4 million in 1974 to 7.2 million in the past decade
(Bridging Refugee Youth and Children’s Services,
2013). In the United States, the impact of war on
families, other than for refugees, is limited to
wartime separation and reunion.
Over time, serving in one of the branches of the
U.S. military has become far less common. Since
2001, only 1.6 million veterans (or less than 0.05%
of the population) have served in Afghanistan or
Iraq, compared to the 16 million or 12% of the
population that served in World War II (Meagher,
2007). Still, the consequences for family members
of military personnel are often dire and long last-
ing. Death, injury, and short- and long-term dis-
ability of the veteran are stressors that can make life
difficult for families (Cozza, Chun, & Polo, 2005;
Rosenheck & Fontana, 1994). An increase in trau-
matic brain injury sustained during war is associ-
ated with physical health problems that are made
worse by PTSD and depression (Hoge et al., 2008).
Alarmingly, one out of every four people in the
United States who commits suicide is a veteran
(Glauber, 2007).
The deployment of thousands of family mem-
bers during Operation Iraq has opened eyes to the
effects of the traumas of war on families. This war
resulted in 6,364 causalities and 48,296 wounded
U.S. troops. Two million children were affected by
separation from parents, changes in health status of
parents, and/or loss of parents as a result of this
war. Forty-four percent of these children were
under 6 years of age, so were particularly prone to
the effects of trauma from co-experiencing family
trauma (Smith, 2013). As evidence of the difficulty
these families face, the telephone calls to the
24-hour helpline Military OneSource, which pro-
vides counseling to veterans and their families,
numbered over 100,000 in the first 10 months of
2005; the calls increased by 20% in 2006. More
than 200,000 antidepressant prescriptions were
written for military families/service members over
a 14-month period in 2005–2006.
Moreover, unidentified and untreated PTSD
presented special risks for family reintegration
and put the veterans and their families at higher
danger for maladaptive responses to stress, such as
alcoholism, depression, and family violence (Black
et al., 2004; Bremner, Southwick, Darnell, &
Charney, 1996; Dansky et al., 1999; Davis &
Wood, 1999). Most soldiers, in particular, have
transient symptoms of PTSD. These symptoms
resolve for most when stability and routine is re-
stored. This is the same pattern for children. But
Trauma and Family Nursing 331
3921_Ch11_321-350 05/06/14 11:10 AM Page 331
the risk for trauma-related symptoms in children
from their parents’ traumatic experiences increases
with prolonged separation from parent(s), and de-
creased time between recovery from one traumatic
event and to onset of another (i.e., repeated deploy-
ment, or repeated terror associated with war)
(Smith, 2013). Because of the increased under-
standing of the risk of PTSD in family members,
the military has funded numerous studies to iden-
tify effective strategies to prevent PTSD in soldiers
and their family members. One program, entitled
Building Resilience and Valuing Empowered Fam-
ilies (BRAVE Families), employs strategies used for
families experiencing urban violence, Hurricane
Katrina, and the World Trade Center terrorist at-
tack. These strategies include individual and family
education and support about PTSD, art and play
therapy for children, parenting guidance, and
group therapy and support (Smith, 2013). The goal
of programs designed to reach PTSD at the meso
level is to reach more families in a nonintrusive
manner rather than waiting for families to experi-
ence pathology first.
Family Violence and PTSD
Family violence is generally divided into three
categories: physical violence, emotional violence,
and sexual abuse. The cause of family violence is
well studied and is considered multifaceted, with
influences ranging from multigenerational trauma
(Hulette, Kaehler, & Freyd, 2011), social and cul-
tural learning, mental disorders, and oppression
(Abbassi & Aslinia, 2010).
Family violence is often both a cause and an out-
come of PTSD in family members. Orcutt, King,
and King (2003) examined the impact of early-life
stressors, war-zone stressors, and PTSD symptom
severity on partner’s reports of recent male-perpe-
trated intimate partner violence (IPV) among
376 Vietnam veteran couples. The results indicated
that several factors are directly associated with fam-
ily violence, including relationship quality among
the spouses, war-zone experiences of stress, and
PTSD symptom severity. Experiencing PTSD
symptoms as a result of previous trauma appears to
increase an individual’s risk for perpetrating family
violence. Risk for partner violence is considerably
higher among veterans with PTSD when both low
marital satisfaction and alcohol abuse-dependence
are present (Fonseca et al., 2006; Taft et al., 2005).
Domestic violence also increases the risk for
PTSD and is a cause for PTSD for both the victims
and witnesses of the violence. The incidence of
witnessing domestic violence and related trauma
continues to be a major public health problem. In
2006, it was estimated that 29.4% of children in
dual-parent homes lived in a home where partner
violence was present. The risk to children is great,
including physical injury from getting in the
“cross-fire” to psychological distress similar to chil-
dren experiencing direct abuse (Kitzmann, 2012).
In a meta-analysis of 118 studies from 1978 to 2000
on witnesses of domestic violence, Kitzmann,
Gaylord, Holt, and Kenny (2003) found that chil-
dren experiencing parental domestic violence fared
poorly in the areas of both internalized (i.e., with-
drawal) and externalized (i.e., aggression) behaviors
compared to controls 63% of the time, and had
similar outcomes to those children experiencing
direct abuse. Of interest is that the age of the
child did not predict the degree of psychological
distress, indicating that witnessing parental domes-
tic violence is as dangerous for young children as it
is for adolescents.
332 Families Across the Health Continuum
Other family trauma also negatively affects the
individuals within the family. For example, children
experiencing divorce and abuse are at particular risk
for later adult mental health disorders, including
PTSD and depression. In a study of 5,877 individuals
ages 15 to 54 years from the National Co-morbidity
Study, Affi et al. (2009) found that children exposed
to both divorce and abuse had the highest rates of
mental health disorders as adults, particularly PTSD.
A meta-analysis of 124 articles on long-term out-
comes of children experiencing physical abuse or
3921_Ch11_321-350 05/06/14 11:10 AM Page 332
neglect found more depression, suicide risks, family
violence, and substance abuse when compared with
those not exposed to abuse and neglect (Norman
et al., 2012). The experience of trauma, especially re-
peated traumas, increases the risk of long-term neg-
ative outcomes for children and adults. Each family
member exposed to abuse, neglect, and major tran-
sitions and loss, such as divorce, is at risk for PTSD,
as well as continuing the cycle of violence within
families (Hulette, Kaehler, & Freyd, 2011). These
findings clearly support the need for family care
and interventions by nurses and other health profes-
sionals to prevent family-centered trauma.
Families Affected by Disasters
Disasters are events that cause widespread destruc-
tion of property, dislocation of people, and imme-
diate suffering through death or injury. Disasters
interrupt meeting basic daily needs for an extended
time, causing suffering that cannot be addressed
easily by those affected and making recovery diffi-
cult (American Red Cross, 2003) for families. Dis-
asters are classified as either natural or human
caused. Natural disasters include weather and seis-
mic events such as floods, hurricanes, and earth-
quakes. Human-caused disasters include events
such as fires, building collapse, explosions, acts
of terrorism, or war. Acts of terrorism or violence
include the use of chemical, radioactive, nuclear,
biological, or explosive weapons that can cause
great harm and stress.
across the world were killed by natural disasters
(e.g. hurricanes, tornadoes, earthquakes, storms,
tsunamis, and volcanic eruptions) (International
Federation of Red Cross and Red Crescent Soci-
eties, 2012). An additional 100,000 people were
killed worldwide from technological disasters,
ranging from industrial accidents to transportation
accidents (International Federation of Red Cross
and Red Crescent Societies, 2012). During the
years 2004–2005, natural disasters killed 336,540
people in the world and further, over 300 million
people were directly or indirectly affected by those
disasters (International Strategy for Disaster Re-
duction, 2006). In the United States alone during
2007, tornadoes killed 80 people, and thunder-
storms and accompanying floods, lightning, winds,
and hail caused another 157 deaths (National Se-
vere Storms Laboratory, 2007). In 2011 the Disas-
ter Relief Fund requested $1.95 billion in aid for
families and individuals affected by such disasters
(U.S. Department of Homeland Security, 2011).
Regardless of the type of event, families are af-
fected in multiple ways when disasters strike. Some
of the many stressors that occur include loss of
significant others, injuries to self or family, separa-
tion from family, or extensive loss of property
(Norris, 2007). These losses result in heightened
feelings of stress, with many families experiencing
symptoms of acute and chronic PTSD.
Family Functioning and PTSD
Trauma-related reactions leading to PTSD have a
negative impact on family functioning. In a study
of current relationship functioning among World
War II ex-prisoners of war, over 30% of those with
PTSD reported relationship problems compared
with only 11% of those without PTSD (Cook,
Riggs, Thompson, Coyne, & Sheikh, 2004). In
Vietnam veterans, PTSD symptoms have been sig-
nificantly associated with poor family functioning
(Evans, McHugh, Hopwood, & Watt, 2003), and
problems with marital adjustment, parenting satis-
faction, and psychological abuse (Gold et al., 2007).
The PTSD symptoms of avoidance and emotional
numbing in particular have deleterious effects on
parent-child relationship satisfaction (Samper,
Taft, King, & King, 2004). Among Iraq and
Afghanistan veterans, trauma symptoms such as
sleep problems, dissociation, and severe sexual
problems predicted lower marital satisfaction for
Trauma and Family Nursing 333
Natural disasters are the most frequently occur-
ring type of disaster. In the last 10 years, the Inter-
national Red Cross reported that 1.1 million people
3921_Ch11_321-350 05/06/14 11:10 AM Page 333
both the veteran and his partner (Goff, Crow,
Reisbig, & Hamilton, 2007). In their review of the
literature on secondary trauma in the United
States, Galovski and Lyons (2004) identified that
veterans’ numbing and hyperarousal symptoms
were especially predictive of family distress.
Secondary Traumatization and PTSD
The impact of PTSD is not limited to the trauma-
tized persons themselves. Spouses of the injured
persons seem particularly susceptible to a phenom-
enon called secondary traumatization (Dirkzwager,
Bramsen, Ader, & van der Ploeg, 2005). Secondary
traumatization has only recently been described
and is not yet a diagnostic category in the DSM-
IV (APA, 2000). In a study of Dutch peacekeeping
soldiers and their families (Dirkzwager et al., 2005),
it was found that partners of peacekeepers with
PTSD symptoms reported more sleeping and so-
matic problems, more negative social support, and
judged the marital relationship as less favorable
when compared to the general population. Another
study in Israel found that spouses of veterans with
PTSD suffered from higher levels of emotional dis-
tress and a lower level of marital adjustment than
the general population (Dekel, Solomon, & Bleich,
2005). In a qualitative study of wives of Israeli vet-
erans with PTSD, Dekel et al. (2005) noted that
the wives were carrying a heavy burden supporting
and caring for their husbands and families; all of
them identified personal symptoms of PTSD from
hearing about their partner’s trauma and experi-
encing the negative affects on their partner’s
health. Partners of veterans with combat-related
PTSD experience significant levels of emotional
distress (Manguno-Mire et al., 2007).
This pattern is not limited to family members
caring for veterans with PTSD (Devilly, Wright &
Varker, 2009). Other studies have looked at non–
family members. Thomas and Wilson (2004) re-
ported that 7% of professionals working with
traumatized victims experience symptoms consis-
tent with PTSD. Other researchers have attempted
to define this phenomenon, using terms including
compassion fatigue, professional burnout, and
secondary traumatic stress (Meadors, Lamson,
Swanson, White, & Sira, 2009; Newell & MacNeil,
2010). Each definition describes the psychological
and physical response to caring for victims but not
directly experiencing trauma. Meadors et al. (2009)
studied 167 professionals working in pediatric in-
tensive care units. They found a significant corre-
lation between compassion fatigue, or secondary
traumatization, and symptoms of PTSD. Nurses,
physicians, social workers, and chaplains described
the difficulty of caring for families who had a child
severely ill, injured, or dying. These professionals
not only heard about the traumatic event repeat-
edly from families, but witnessed the traumatic
events over and over as they cared for families
across time. This witnessing of trauma led to sec-
ondary traumatization.
Prevention is the goal with primary treatment of
potential PTSD; several programs start interven-
tions at the time of the traumatic event within a
family rather than waiting for symptoms to develop
(Skelton, Loveland, & Yeagley, 1996). Outcomes
improve with a combination of individual and fam-
ily therapy, along with appropriate medication
management of symptoms when needed. In a study
of seven children following a bus accident, the
combination of individual and family therapy with
selective serotonin reuptake inhibitors (SSRIs) re-
sulted in a remission of PTSD symptoms, whereas
the control group who only received medication
still had symptoms 3 months later (Stankovi_ et al.,
2013). In the cases where medication and family
therapy was used, researchers used Systematic
Family Therapy (SFT), a structured family therapy
protocol, to facilitate family involvement and fam-
ily directed interventions. It proved effective in
preventing chronic PTSD in victims.
COMMUNITY AND TRAUMA
The community response to trauma can have a
major impact on the degree of PTSD experienced
by individuals, families, and the community as a
whole. The community has a key role in the pre-
vention and treatment of trauma. Child welfare
services often respond to threats of trauma from
abuse and neglect, and police services often re-
spond to threats of domestic or community vio-
lence. Hospitals are critical in the immediate
treatment of physical and psychological trauma,
and private and community or county mental
health services are at the forefront in leading every
community through prevention and treatment of
trauma (Gard & Ruzek, 2006). These agencies each
have a responsibility to be trained for their role in
334 Families Across the Health Continuum
3921_Ch11_321-350 05/06/14 11:10 AM Page 334
trauma care. For example, if child welfare workers
are not properly trained on trauma, they may not
support foster parents in appropriate reactions to
children with trauma-related behaviors. This lack
of support may lead to placement failure, and result
in children being retraumatized by multiple inter-
ruptions in attachment, initiating a dangerous cycle
(Richardson, Coryn, Henry, Black-Pond, & Unrau,
2012). Table 11-2 presents responses to questions
regarding exposure to trauma, as a training guide
for health care professionals.
Consider the following scenario: A 13-year-old
child, who is recovering from PTSD resulting from
sexual abuse by her father, is placed into foster care.
During counseling, she is encouraged to retreat to
a quiet place when stimulation from the crowded
foster care becomes too much. Due to lack of train-
ing, however, her foster mother punishes her for
“being too isolated.” When she goes to school, she
becomes overwhelmed by fear, and retreats to the
library to regain her homeostasis. Because her
teachers are untrained and unaware of her needs,
she is again punished. She begins to distrust her
counselor, foster parent, and teachers, and relapses
into fear, disconnection, and dysregulation. She
retreats back into rigid boundaries. This short
vignette illustrates the importance of educating
community-based service providers to understand
trauma, and to integrate and collaborate services to
promote positive rather than dangerous and nega-
tive outcomes.
SYSTEMIC TRAUMA
The symptoms of PTSD cross individual, family,
and community boundaries. Many argue that the
United States of America is suffering from PTSD
from repeated traumatic events such as wars, natu-
ral disasters, and economic traumas across time
without resolution or intervention. This has re-
sulted in a nation with PTSD symptoms, including
depression, intrusion of unwanted and negative
thinking patterns, hyperarousal especially to per-
ceived threats from others, and related health de-
cline. One clear symptom of this premise is the
decline in the general health of U.S. citizens, not
unlike the health of individuals suffering from
PTSD. We possess the shortest life span of any in-
dustrialized nation, with almost half of American
adults struggling with hypertension, high choles-
terol, diabetes, or all three. Further, more than
one-third of adults and children are obese (U.S.
Department of Health and Human Services, 2012).
We are seeing increasing numbers of individuals
with stress-related disorders, stemming from or
causing mental illness, substance abuse, and domes-
tic violence. Infant mortality is dismally high, with
the United States rate ranking highest among the
top seven industrialized countries of the world
(U.S. Department of Health and Human Services,
2012). Child abuse rates are equally high when
compared with other nations (U.S. Department of
Health and Human Services, 2012). One-quarter
of our nation’s children take prescription medica-
tions. One-fifth of our nation’s children have been
diagnosed with a mental health disorder (Hensley,
2010). Twenty-six percent of all children in the
United States will experience or witness a traumatic
event before they reach age 4 years (Substance
Abuse and Mental Health Services Administration,
2011). These statistics show symptoms of a country
experiencing dysregulation and systemic trauma.
The high obesity rates in the United States are
a clear example of a nation experiencing dysregu-
lation and fear. Obesity is growing the fastest in our
poor and crowded neighborhoods. The lack of
healthy foods, safe neighborhoods that support
outdoor activity, high levels of stress, and presence
of early and repeated trauma are key factors in
Trauma and Family Nursing 335
Table 11-2 Responses to Questions Regarding
Exposure to Western Trauma Discourse
Have you ever attended workshops or trainings about how
people are affected by extremely frightening or traumatic
events?
Never: 85.9%
<1 day: 7.7%
<2 days: 1.3%
2 days: 1.3%
2+ days: 3.8%
Have you ever listened to radio programs/read literature
about how people are affected by extremely frightening or
violent events?
Never: 19.2%
1–2 times: 16.7%
3–4 times: 39.7%
4+ times: 15.4%
7+ times: 9.0%
3921_Ch11_321-350 05/06/14 11:10 AM Page 335
causing obesity and related chronic health condi-
tions (Karr-Morse & Wiley, 2012). Yet, the re-
sponse to obesity is not centered on trauma-related
interventions, but instead on unsuccessful dieting
and major surgeries.
Another indicator that the United States as a
nation is struggling with PTSD is the increasing
rate of substance abuse. Although nicotine addic-
tion is at an all-time low, addiction to other sub-
stances, such as alcohol and opiates, is increasing at
an alarming rate (National Institute on Drug
Abuse, 2012). Researchers have found that those
struggling with food cravings leading to obesity,
and those struggling with drug addiction, both ex-
hibit decreased dopamine levels. Overeating and
drug use temporarily raises dopamine levels. A lack
of dopamine, particularly in the frontal cortex, is
caused by early trauma more often than genetics
(Karr-Morse & Wiley, 2012). A country experienc-
ing repeated trauma without resolution quickly fills
with individuals, families, and communities highly
stressed and traumatized, with resulting increase in
stress-related disorders. Chronic stress is toxic
stress. Toxic stress, as defined by the Center on the
Developing Child at Harvard University, is when
an individual experiences strong, frequent, and pro-
longed stress such as chronic child abuse or neglect,
without adequate support (Center on the Develop-
ing Child, 2012). Toxic stress interferes with the
ability to learn, be creative, stay healthy, and have
joy. Countries that experience toxic stress through
natural disasters, war, or dysregulation of major
systems also experience a drop in the ability to
learn, be creative, have healthy citizens, and have
joyous outcomes. Robin Karr-Morse and Meredith
Wiley, the authors of Scared Sick: The Roles of
Childhood Trauma in Adult Disease (2012), compared
our body’s response to stress to the U.S. Depart-
ment of Homeland Security. Both systems are
aimed at a complex and integrated system that
maintains safety. When part of that system is over-
taxed or disconnected, safety is threatened. Threats
to the larger system, whether real or imagined, can
further overwhelm the system and lead to disease.
The greater culture and societal laws and poli-
cies can influence the incidence and the treatment
of trauma. Countries riddled with war, poverty, and
disease have higher incidents of PTSD, whereas
countries that support policies that decrease violent
solutions to problems, provide broad access to pre-
ventive and primary health care, and decrease
poverty have lower incidences of PTSD. For ex-
ample, the incident of PTSD in New Zealand is
estimated to be 6.1% of the population (U.S.
Department of Veterans Affairs, 2007), whereas the
incident of PTSD in the Gaza Strip was found to be
70.1% of 9- to 18-year-olds exposed to the ongoing
Israeli-Palestinian conflict (Thabet & Vostanis,
2000). The extent that countries can prevent
and/or treat the causes of PTSD early clearly in-
fluences the health of the citizens in every country.
Many argue that the traumatic events experi-
enced over the course of the last two decades in the
United States were too rapid to resolve and caused
a chronic state of fear in the country. For example,
in 2005 the United States experienced Hurricane
Katrina, continued involvement in the Iraq war,
economic collapse, raging wildfires in California, a
severe snowstorm in New England, and a school
shooting. U.S. citizens watched these disasters un-
fold with little support or education on how to
process these events to avoid symptoms of PTSD.
Today, many talk about feeling numb to the disas-
ters watched on television, and have increased fear
related to travel, economics, and routine activities,
such as attending school. The treatment of PTSD
needs to expand beyond individuals, families, and
communities, and include national and international
traumas and the impact on a nation as a whole.
NURSES AND TRAUMA
Nurses are key in helping with the diagnosis and
treatment of PTSD in individuals and families. Their
presence at the forefront of emergency care of vic-
tims of trauma, and their help throughout the healing
process renders nurses important members of the in-
terdisciplinary team that prevents, treats, and evalu-
ates care for PTSD. This section outlines the nurse’s
role in the prevention, identification, and treatment
of PTSD as part of an interdisciplinary team.
PTSD Nursing Assessment
and Intervention
PTSD can develop after a traumatic event or
events at any age. To be diagnosed with PTSD,
certain conditions must exist. The person has to
have been exposed to a traumatic event; experience
intense feelings of fear, helplessness, or horror (for
preverbal children, the feelings of helplessness are
336 Families Across the Health Continuum
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commonly seen as withdrawal, and feelings of fear
are commonly seen as intense emotional arousal);
reexperience the event through flashbacks, dreams,
or disturbing memories; avoid any stimuli associated
with the event, avoiding any reminders, thoughts,
or feelings about the event; be hypervigilant; have
difficulties falling or staying asleep; have an exag-
gerated startle response; and the symptoms must
have lasted longer than 1 month and must cause
significant distress or impairment in functioning
(National Center for PTSD, 2010).
It is the role of nurses to assess for symptoms
of PTSD. There are simple methods to screen
patients who may have undetected PTSD. One
easy to use tool is the Primary Care PTSD Screen
(Prins et al., 2004), which consists of four questions
preceded by the following introduction:
“In your life, have you ever had any experience
that was so frightening, horrible, or upsetting
that, in the past month, you...
1. Have had nightmares about it or thought
about it when you did not want to?
2. Tried hard not to think about it or went out
of your way to avoid situations that reminded
you of it?
3. Were constantly on guard, watchful, or easily
startled?
4. Felt numb or detached from others, activities,
or your surroundings?”
The screen is positive if the patient answers yes
to any three items.
It is also important for nurses to assess risk
factors and provide families with protector factors,
or positive coping strategies and enhancement of
resiliency characteristics (Friedman, 2006; Warner,
2010). See Box 11-1 on vicarious trauma.
Risks Associated With PTSD
There are a number of risks and risk factors asso-
ciated with both adult and child PTSD of which
nurses should be conversant:
■ Suicidal risk—due to feelings of numbness,
disconnect with support people, chronic fear
and anxiety, and feelings of hopelessness and
helplessness.
■ Danger to others—ask about firearms or
weapons, aggressive intentions, feelings of
persecution.
■ Ongoing stressors—such as changes that have
occurred at home, marital discord, problems
at work.
■ Risky behaviors—such as risky sexual adven-
tures, nonadherence to medical treatment,
substance use and misuse.
■ Personal characteristics—past trauma history,
coping skills, relationship attachment.
■ Limited social support—the individual’s lack
of willingness to accept help and inclination
to isolate.
■ Comorbidity—coexisting psychiatric or
medical problems such as depression and
chronic widespread pain (CWP).
Child risks associated with PTSD include the
following:
■ Dysregulation—unpredictable or irregular
sleep and eating patterns, and difficulty regu-
lating moods and emotional responses.
Trauma and Family Nursing 337
BOX 11-1
Vicarious Trauma
Trauma clearly transcends individuals, families, communi-
ties, and greater societies across time and across cultures.
Nurses are often the front-line professionals to identify
and intervene when acute and chronic trauma occurs. A
real risk for nurses is the development of the attunement
survival style described by Heller & LaPierre (2012).
This style of coping is characterized by attuning to other’s
needs and neglecting one’s own needs, which is an apt
description of the lived experiences of many nurses. If
nurses identify themselves as givers, yet neglect their
own needs, they are at a high risk for vicarious trauma,
or the development of PTSD symptoms from caring for
or witnessing trauma in others. This condition is also re-
ferred to as compassion fatigue and secondary trauma
in the literature (Afifi et al., 2009). This term has evolved
as helping professionals were identified as being at high
risk for negative psychological reactions to their job, with
early descriptions of burnout. Symptoms of burnout in-
clude feeling overwhelmed, hopeless, helpless, and un-
appreciated. Motivation is lost, and if unrecognized and
untreated, it may lead to depression, loss of job, and, in
the long term, early death (Smith, Segal, & Segal, 2012).
Although burnout can be caused by repetitious and unin-
spiring work, it can also be caused by vicarious trauma.
Prevention of vicarious trauma is possible through edu-
cation, avoiding professional burn-out, and professional
and peer support during and after caring for traumatized
patients (Trippany, White Kress, & Wilcoxon, 2004).
3921_Ch11_321-350 05/06/14 11:10 AM Page 337
■ Poor connection—difficulty forming or
maintaining relationships, with a tendency
to be alone, have poor eye contact, and resist
connection with others.
■ Poor cognitive development—difficulty
with attention, short-term memory, problem
solving, creativity, and play. High incidence
of learning disabilities, particularly auditory
processing disability.
■ Poor attunement skills—difficulty recognizing
and asking for needs.
■ Inability to trust—difficulty forming relation-
ships, oppositional behavior, sleep problems.
■ Hyperarousal—increased response to envi-
ronmental stressors or memories, with rage,
anger, or severe anxiety.
The best evidence-based nursing treatments for
the individual with PTSD include both psychother-
apeutic interventions—such as cognitive-behavioral
therapy and family therapy—and medications, pri-
marily SSRIs (Friedman, 2006; Herbert & Forman,
in press; Herbert & Sageman, 2004). Partner and
family engagement in PTSD treatment has been
shown to improve the treatment outcomes. Predic-
tors of partner engagement include higher income,
patient-partner connection, and lower partner care-
giver burden (Sautter et al., 2006).
Secondary Family Traumatization
Assessment and Intervention
To help the traumatized family, the nurse should
first realize that traumatized families rarely seek
family-focused intervention. Instead, they often
present with problems that are not immediately re-
lated to the traumatic events they have experienced
(Figley & Barnes, 2005). Nurses should learn the
parallel processes of individual and systemic stress
reactions that follow a traumatic event. Figley and
Barnes (2005) offer suggestions to help clinicians
recognize family responses to traumatic events
and offer some interventions to help patients and
families affected by these events. For example, fam-
ilies are affected by the individual’s symptoms of
PTSD. They know the story of the trauma, witness
the symptoms, and want to help in some way. As a
result, the family spends more and more time car-
ing for the traumatized member. Moreover, while
the traumatic event is being persistently reexperi-
enced by the exposed family member, the other
family members are responding to this individual’s
increased demands for support. As the primary
affected family member tries to avoid stimuli and
reminders of the trauma, the other family members
must devote increased time, energy, and problem
solving to avoid conversations, people, places, and
things that might stimulate memories. They have
to tolerate the withdrawal and numbing that goes
along with the primary affected family member’s
diminished interest in usual activities, refusals to
see friends, and inability to express love and caring.
The family becomes increasingly more isolated.
The other family members have to manage prob-
lems with sleep, outbursts of anger and rage, exag-
gerated startle responses, and hypervigilance about
safety. These factors increase the risk of secondary
traumatization, or symptoms of PTSD in family
members from witnessing the traumatic stories
and the negative impact on their family member.
Secondary traumatization is considered acute if the
duration is less than 3 months, chronic if the dura-
tion is 3 months or more, and delayed if the onset
is at least 6 months after the stressor.
Nurses Applying the Ecological Systems
Theory Approach to Trauma Treatment
Treatment of trauma begins with the treatment of
interrupted trust and attachment (Heller &
LaPierre, 2012). Infants and young children who
experience rejection and abuse early in life often
expect that same experience from present and
future caregivers. A trusting and therapeutic rela-
tionship must form. This process is slow, as the
child or adult who has learned to avoid feelings and
relationships will first resist, and then struggle with
moderating those feelings and relationships, and
then, if successful, learn to trust. The initial steps
of treatment are as follows:
1. Move slowly: building connections can be
terrifying to a traumatized individual.
2. Build trust: building a therapeutic relation-
ship depends on being predictable and
trustworthy.
3. Be empathetic: you may be the first kind
person in their lives.
4. Help children and adults listen to and explore
their new skills at identifying emotions, or-
ganizing thoughts and emotions, and learn-
ing different reactions and responses to their
emotions.
5. Help build self-esteem through teaching
top-down thinking. For example, if an
adult has always felt he was bad because of
338 Families Across the Health Continuum
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traumatic events in his life, help him rethink
about the events being bad instead.
6. Gradually support and encourage connection
with their own feelings, then their body re-
sponses and reactions, and finally connection
to other people. The connection to other
people should also be gradual, starting with
close caregivers or family members, and
advancing as tolerated to outside peers and
associates.
7. Be available to help the child or adult ex-
plore feelings of rejection, anger, abandon-
ment, and fear. Many individuals who have
experienced trauma have survived by be-
coming numb. As this numbness fades, sur-
vival feels threatened. During this transition
from numbness to feeling, many may with-
draw for varying periods of time. A thera-
peutic nurse will recognize this pattern and
avoid judging the traumatized individual
during these phases.
The nurse working with a traumatized family
needs to explore each family member’s perception
of what happened both before and after the event
(Figley & Barnes, 2005). The family may block the
telling of trauma if the family was the cause of that
trauma. Listening to individuals and observing for
signs of secondary trauma can be critical to getting
help for all family members. The nurse needs to
recognize that the family’s worldview will have
been altered by the traumatizing events and that its
attitudes and beliefs may shift from safety to suspi-
cious, distrustful attribution regarding the motiva-
tions of others, including helping professionals.
Hypervigilance and controlling behaviors may ac-
tually interfere with the family getting the help it
needs. In addition, if the stressors impinging on the
family go unattended, a pattern of triangulation
and blaming may become the central family dy-
namic. Also, the roles in the family may shift, with
some members becoming more enmeshed with the
traumatized member, and others withdrawing from
the family system. Children may have to take on
the role of emotional caretaker for the parents and
thus be compelled to hide their own feelings and
fears, while other siblings act out to express anger,
leading to more parenting stress. Most emerging
trauma treatment has as its main shortcoming the
focus on the individual rather than the family sys-
tem. Careful implementation of interviewing tech-
niques and the exploration of the family life
experience through ecomaps will assist nurses to
access the complex relationships and characteristics
of families living with trauma or post-traumatic
complications.
The nursing role also includes looking at com-
munity actions and societal responses to trauma at
a personal, family, community, and societal level,
and how that trauma affects health. Becoming in-
volved with prevention strategies, such as commu-
nity preparedness for disaster, can lead to improved
community health. Working with national organi-
zations to provide organized community-based in-
terventions for traumas can be an important step to
preventing negative long-term consequences. Par-
ticipating in research and implementing research
findings that demonstrate the impact of trauma on
all ecological levels can help improve treatment
plans and outcomes. Finally, shaping policies at
the national level that support families in need, by
decreasing poverty, improving access to health
care, supporting parents with improved child care
options and improved parenting education and sup-
port, and reducing environmental stress, can be an
important step to reducing PTSD in children,
adults, families, communities, and nations.
Case Study: Knoll Family—An
Ecological Approach
This case study offers an example of a family that experi-
enced trauma, and the impact of individual trauma and
family trauma on all family members. The events that
occurred within this family illustrate the complexities of
prolonged stress, pile-up of stressors, risk factors, and
resiliency characteristics touching the individual, family,
community, and nation.
Family Members:
• Mother: Emma (age 45)
• Father: Peter (age 46)
• Oldest daughter: Ignes (deceased at age 11 years)
• Oldest son: Jason (age 14)
• Youngest son: Bradley (age 12)
Figure 11-5 shows the Knoll family genogram.
The Knoll family has experienced a number of losses
and trauma over the past 5 years. This family lives in a
low-income trailer within a trailer park. The neighborhood
is run-down, but considered safe. The parents are currently
divorced, and the father visits once a week for 2 to 3 hours.
Trauma and Family Nursing 339
(continued)
3921_Ch11_321-350 05/06/14 11:10 AM Page 339
The family is white, non-Hispanic and the religion is Seventh
Day Adventist. Because of the family’s low income, family
members have state-provided health care insurance, limit-
ing access to mental health care to 30 minutes per week.
Although county mental health care services are available
in the community, the waitlist is over 6 months, and ex-
perts on family trauma are not currently available. Because
of this, the family has sought mental health care and med-
ication management for family members at a private family
care clinic specializing in trauma.
Family Development:
The mother Emma has a history of learning disabilities and
anxiety. Although she denies any stress in her childhood,
and describes her parents as stable and loving, she experi-
enced a series of traumas starting 5 years ago. The first
trauma was the diagnosis of a severe anemia (Diamond
Blackfan anemia) in her 11-year-old daughter. Although the
doctors felt her daughter’s prognosis was good, she died
from complications following a bone marrow transplant.
Because of the intense and traumatic nature of this event,
the father left the hospital before his daughter died, and
did not return to the family for 2 years. He stated he could
not handle his grief at her death, and just wanted to “run
away” and not think about it. His abandonment led to the
family losing their home to foreclosure, as the mother had
never held a job outside of the home, and she was left
with severe grief and the responsibility of caring for her
two other children. Her two sons both had the diagnosis
of autism, moderate mental retardation, and severe mood
disorder. She felt immediately overwhelmed, and felt she
had to find a partner to help her.
She met a man at her church. Unfortunately, he raped
her during their third date. Her symptoms of PTSD started
after this sexual assault, including flashbacks, severe anxiety,
hyperarousal, and avoidance of friends and family members.
Three months after the rape, she started dating a second
man, whom she met on-line. This relationship was unstable,
with episodes of verbal abuse, and frequent abandonment
from weeks to months. In spite of this instability, the mother
married this man. She divorced him 9 months later due to
his abandonment back to the East Coast. She then met a
third man on-line, and started dating him. The relationship
went well for several months, leading to her decision that
she would allow this new man to move into her home. He
was initially very helpful with her sons. Soon, however, he
revealed that he had been diagnosed with bipolar disorder,
and could not afford his medications. He had a manic
340 Families Across the Health Continuum
Bradley
12 yr
Severe mood disorder
Aggressive rage attacks
Special education
Jason
14 yr
Delayed mentally
Autism
Mood disorder
Rage attacks
Ignes
Died @
age 11
in 2008
Emma
45 yr
Learning
disabilities
Anxiety
Peter
is to be
46 yr
Bipolar
Anxiety
FIGURE 11-5 Knoll family genogram.
3921_Ch11_321-350 05/06/14 11:10 AM Page 340
episode, which included domestic violence and “rage at-
tacks” toward the mother and her two sons. She kicked
him out, and has now remained single for several months.
The oldest son (14) is developmentally at the first-grade
(6-year) level in all areas except art, at which he excels.
He struggles with dysregulation of moods, inattention, poor
short-term memory, impulsivity, and intermittent rage attacks
resulting in aggression toward his mother and destruction of
property. These rages occurred up to three times per day
without medication, but less than once per month on med-
ication. He is currently taking Abilify 15 mg, Straterra 25 mg,
and Zoloft 75 mg. He also takes hydroxyzine up to 50 mg as
needed for severe agitation and anxiety. He currently receives
special education services through the school district and is
placed in the Life Skills Program. He can read simple books,
write three- to four-word sentences, and participate in age-
level choir and art classes. He currently states that he has no
friends at school or in his neighborhood. He spends his free
time drawing, watching television, or playing video games.
The younger son (12) is developmentally at the fifth-
grade (10-year) level in all areas. He struggles with dysreg-
ulation of moods, inattention, poor short-term memory,
impulsivity, and intermittent rage attacks resulting in aggres-
sion toward his mother and brother, and has in the past
threatened his mother and brother with a knife. These
rages occurred up to three times per day without medica-
tion, but less than once per month on medication. He is
currently taking Abilify 15 mg, Topamax 50 mg twice daily,
Straterra 18 mg, and Zoloft 50 mg. He also takes hydrox-
yzine up to 50 mg as needed for severe agitation and
anxiety. He currently receives special education services
through the school district and is placed in the Life Skills
Program. He can read chapter books, write three- to four-
paragraph stories, and participate in age-level choir and
music classes. He currently states that he has no friends at
school or in his neighborhood. He spends his free time
reading, watching television, or playing video games.
The father currently works full-time at a grocery store as
a clerk. He has been diagnosed with bipolar disorder and
anxiety. He does not take any medication, resulting in
manic episodes an average of once every 2 years, evi-
denced by increased interest in pornography, insomnia,
and running from his current situation. In between these
manic attacks, he is functional and well regarded at work
and at church. He currently has a girlfriend who lives
200 miles away. He visits her every weekend. He pays
$350 per month for child support.
Function:
Emma assumes the role of primary caregiver of her two
children. Her mother, an 83-year-old woman in good
health, however, provides daily support, including caring for
the two boys and helping with housecleaning. The grand-
parents also provide regular financial assistance, as child
support payments are sporadic. Emma makes all decisions
regarding finances, parenting, and leisure activities. Peter
has very few roles within the family, as he inconsistently
assists with finances, and only participates in parenting
3 hours per week. He allows Emma to make all decisions.
The two boys are expected to participate in school and to
help with chores within the home. Both boys neglect their
chores, and the mother also dislikes housework, leading to
the home being messy and disorganized. Child Welfare
Services has been called due to the disarray of the house,
which led to some community support, including assis-
tance with painting, fixing the bathroom, and cleaning and
replacement of the carpet.
Communication within the family started out as distant
and emotionally abusive. Through intensive counseling
and parent coaching within the clinic and through home
visits, the family now participates in healthier communica-
tion patterns, nonviolent problem solving, and shared
positive experiences. Each family member, however, con-
tinues to show signs of chronic PTSD, due to repeated
and severe traumas within the family. When asked about
adverse events, the mother summarized the events as
follows:
• The diagnosis of autism in her oldest son.
• The diagnosis of autism in her youngest son.
• The diagnosis of Diamond Blackfan anemia in her
daughter, with resulting death of her daughter.
• The loss of her husband and divorce.
• The loss of her home and the dependence on her
parents for financial support.
• The sexual assault during a date (i.e., “date rape”).
• The difficulty finding adequate health care for herself and
her children.
• The difficulty finding adequate educational services for
her sons.
• The abandonment by her second husband.
• The domestic violence by her domestic partner.
Emma was asked about resiliency skills for both herself
and her sons. She felt she had positive support through
her parents, a strong religious affiliation including daily
prayer, the absence of any substance abuse, and the ability
to adapt to the many changes and traumatic events occur-
ring in the last 5 years. She noted that her sons were her
support as well as her burden. She stated that they both
were very adaptable at times to big changes, but could not
Trauma and Family Nursing 341
(continued)
3921_Ch11_321-350 05/06/14 11:10 AM Page 341
tolerate small changes, such as changes in the schedule.
Resiliency areas where this family lacked included: optimism,
self-efficacy, low cognitive function for all family members
except the grandmother, ability to participate in healthy
self-care (i.e., the family had poor nutrition, never exer-
cised, and had limited social support), and lack of trust of
helping professionals due to negative involvement of Child
Welfare Services.
Nursing Interventions:
Microsystem: The individuals within this family needed a
thorough and comprehensive assessment of symptoms of
PTSD given the history of repeated and prolonged trauma
and caregiving overload. The mechanism of prolonged
stress for the two sons could have started in early child-
hood, given their symptoms of mood dysregulation, atten-
tion-deficit disorder, rage, and cognitive impairment.
Through a careful assessment, it was determined that both
boys had experienced neglect during the first 4 years of
their life, as mother described feeling depressed and over-
whelmed by parenting responsibilities. She admitted that
she would leave both boys alone for hours while she slept,
with this pattern going on for days. She was not evaluated
for or diagnosed with depression, but she stated that she
lacked energy, motivation, or ability to care for her sons,
and often felt resentful toward their care. While her 11-
year-old daughter helped at times, she was at school or
with friends a majority of the time until her illness was di-
agnosed. After this point, the mother devoted all of her
available energy to her daughter’s care. After the death of
her daughter, she once again retreated to bed most days
until she started counseling.
The understanding of each of the individual’s experi-
ences and related traumas helps the nurse identify the
need for individual care for each family member. The
boys started with individual counseling utilizing play and
art therapy. They soon built a trusting relationship with
the therapist, and learned across time to become more
attuned to their own needs, learned to ask for their needs
appropriately, and to regulate their responses to emo-
tions. Their cognitive abilities improved from being years
behind grade level to being considered “low normal” in
their academic skills. Medications were adjusted to help
both boys regulate moods, concentrate when needed,
and to have regular sleep, eating, and digestive patterns.
Meanwhile, the mother and father received individual
counseling and medication management to address their
symptoms of PTSD, and both received parent counseling
and coaching.
Mesosystem: Family-centered care was instituted imme-
diately to improve family development and functioning.
Family self-care strategies were initially implemented to sta-
bilize and organize the family, followed by family meetings
to address communication skills, problem-solving skills,
and to build positive connections between and among
family members. During the family meetings, the family
also discussed grief, including the loss of the daughter/
sister, loss of the marriage, and loss of the family home
and related stability.
Macrosystem: This family struggled with finding sup-
portive community resources. See Figure 11-6, the Knoll
family ecomap, which depicts the subsystems. While fam-
ily members were devoted to their religion and sought
support through this community service, the church
would not allow the family to attend services due to the
boys’ disruptive behavior. When the church refused to
baptize the youngest son due to his autism, the family left
this church. They are currently seeking a new church to
join. The mental health care services were at first difficult
to find because of the long waitlist and lack of appropriate
specialist to manage this family’s care at the county men-
tal health clinic. Private services were found, however, and
these services helped this family gain the support it
needed to thrive. Private services were funded through
the state insurance program, ensuring health care for all
children. The school system was equally frustrating, as
it struggled to communicate with the mother about
approaches to the boys’ behavior and learning deficits.
Supplemental services, including the use of an autism
specialist, occupational therapist, counselor, and speech
therapist, helped improve the boys’ academic and cogni-
tive abilities. Child Welfare Services, while trying to im-
prove the home environment, ended up increasing
mistrust of helping professionals through their unneeded
threats. This outcome is consistent with studies showing
that if community agencies are not well trained in trauma,
the interventions may cause more harm than good
(Richardson et al., 2012).
Exosystem: This family was affected by societal rules,
culture, and policies. The availability of health care
through the state allowed services to this family, but lim-
ited those services to brief weekly contacts. The system
also allowed for free public education for the boys, which
assisted in their cognitive and social gains. The exosystem
also resulted in the family being part of a culture of
trauma, with an inability to escape poverty and poor
housing, and, because of lack of access to healthy foods
342 Families Across the Health Continuum
3921_Ch11_321-350 05/06/14 11:10 AM Page 342
and poor preventive health care, an increase in trauma-
related health problems, including obesity, high choles-
terol, and hypertension in all family members. The
exosystem problems were addressed by increased aware-
ness of risks, increased support of prevention behaviors,
and referral to services that counteracted negative exosys-
tem practices and policies.
Outcome Following Treatment:
Following 5 years of treatment, this family is no longer
demonstrating symptoms of PTSD. Each family member
is experiencing positive connections within and outside
the family, stable housing, and improved nutrition, with
Trauma and Family Nursing 343
Strongly attached
Moderately attached
Slightly attached
Tension
Private
family
care clinic
Church
Speech
therapist
Occupational
therapist
Child
welfare
services
Trailer
court
Maternal
grandfather
Maternal
grandmother
Mental
health
services
State
health
insurance
Emma
45 yr
Bradley
12 yr
Jason
14 yr
Peter
Special
education
Direction of
energy flow
FIGURE 11-6 Knoll family ecomap.
resulting improved health, and improved cognitive
functioning. The family is better connected to the com-
munity, and less resentful regarding social policies and
practices that were unhelpful. During this 5-year time
period, the family worked with the same nurse and
interventions focused on ongoing family assessments,
care coordination to facilitate better relationships across
the family care–provider ecology, improving family com-
munication and closeness through the use of rituals
and routines, and individually targeted development
of resiliency characteristics based on trauma-related
care evidence.
3921_Ch11_321-350 05/06/14 11:10 AM Page 343
344 Families Across the Health Continuum
Eileen
43 yr
Secondary
PTSD
Paul
47 yr
• Currently unemployed
• National Guard was
deployed to Iraq
now home
• Insomnia
• Back pain
• PTSD
John
14 yr
Kira
16 yr
High school
Secondary PTSD
High school
Secondary PTSD
FIGURE 11-7 Caldwell family
genogram.
Case Study: Caldwell Family
Mr. Caldwell, a 47-year-old National Guard soldier, in the hos-
pital for a hernia repair, had returned home from a 12-month
deployment to Iraq, where he had his first exposure to com-
bat in his 18 years of National Guard duty. Before deploy-
ment, he worked successfully as a fireman paramedic and
was a happily married father with two children. He and his
wife were socially outgoing with a large circle of friends
from the same rural area in which they both grew up. They
have been married since high school. See a genogram and
ecomap for the Caldwell family in Figures 11-7 and 11-8.
While in Iraq recently, Mr. Caldwell had extensive expo-
sure to other soldiers’ combat injuries as the noncommis-
sioned officer in charge of the battlefield medical aide
station. His unit treated the severe, crippling injuries of
soldiers en route to the trauma hospital. The aide station
was often overrun with multiple casualties. He treated sol-
diers from patrols and convoys in which improvised ex-
ploding devices destroyed vehicles and wounded or killed
people. Although he did not have to kill enemy combat-
ants, he agonized that he may also have been responsi-
ble for the deaths of some soldiers because he simply
did not have enough men or resources to treat all of the
casualties adequately. When asked about the worst mo-
ment during his deployment, he readily stated it was
when he was unable to intercede, while a Humvee with a
bleeding soldier draped over the hood and several
wounded soldiers in the back drove by the aide station,
because the driver’s view was blocked by blood gushing
on the windshield and could not see him waving the
Humvee to safety.
When he first returned home, things seemed to be
okay. But more than 2 years after coming home, he has
had more and more difficulty relating to his wife. He reports
feeling angry all the time, that no one will listen to him.
Sleep has become difficult. He has to sleep on the recliner
in the living room because his back hurts so badly that he
cannot lay flat. When he does sleep, he has a recurring,
vivid nightmare about turning a corner outside of a building
in Baghdad where he encounters an insurgent with a rifle
who shoots him. His daughter complains that he has be-
come so overprotective that he will not let her go out with
any friends, much less any boys. His wife reported that he
has been emotionally distant since his return. His employer,
who initially supported him, has reported that his work at
the fire department has suffered dramatically. During a re-
cent burning motor vehicle extradition drill, one of the car’s
tires exploded. The unexpected explosion rattled him so
much that he became unable to go to work anymore.
Mr. Caldwell says that since his deployment, he no longer
has an identity—he cannot work, and he no longer feels
like he can fulfill his obligations as a husband and a father.
He reports that he sometimes experiences strong surges of
anger, panic, guilt, and despair and that at other times he
has felt emotionally dead, unable to return the love and
warmth of family and friends. He does not want to get a
divorce, but fears this will happen. Although he has not
been actively suicidal, he reported that he sometimes
3921_Ch11_321-350 05/06/14 11:10 AM Page 344
thinks everyone would be better off if he had not survived
his tour in Iraq. He is currently on a number of medications
for back pain from his on-the-job injury at the fire depart-
ment. He is complaining of a lot of postoperative pain.
This composite case illustrates several kinds of war-
zone stressors. Mr. Caldwell felt helpless to prevent several
deaths. In addition to that feeling of helplessness, he had
to witness the horror of many people dying, and had to
respond to emergencies on a very unpredictable basis.
Nurses, who are taking care of patients who have had a
difficult return to civilian life, need to be aware of the com-
plicated nature of readjustment. As this case illustrates, the
prevalence of PTSD may increase considerably during the
2 years after veterans have returned from combat duty
(Wolfe, Erickson, Sharkansky, King, & King, 1999).
This family is dealing with the chronic problems that occur
when a veteran returns home with significant PTSD. The care
for this family, when delivered from a Family Systems Theory
perspective, will need to address Mr. Caldwell’s PTSD, as well
as the family’s ever increasing secondary traumatization from
his stress responses.
Theoretical Perspective:
Using a family systems theoretical approach, plan care for
Mr. Caldwell that includes referral for his PTSD, and pro-
vides the family members with education and resources
about what they can do to address their own secondary
trauma, as well as support his recovery. As part of the plan,
the nurse can help the Caldwell family by drawing a family
ecomap that shows resources currently being used.
Because Mr. Caldwell has been traumatized by his ex-
perience with war, ultimately all of his family members and
family relationships are affected. Mr. Caldwell’s war experi-
ence was his alone, but his wife is being affected by the
symptoms he is experiencing, symptoms that will get worse
as she takes on even more of a caregiving role following
his surgery. The children are baffled by the changes in
their father, and do not know quite what to do. Because
Mrs. Caldwell is so involved with caring for him, the children
do not feel like they can go to her with their problems.
In addition to their parents not being available to them
Trauma and Family Nursing 345
Friends
Friends
Kira John
Paul Eileen
Church
Kira’s
teachers
John’s
teachers
Eileen’s
work
Fire
department
VA medical
services
Family
friend
Strongly attached
Moderately attached
Slightly attached
Tension
Direction of energy flow FIGURE 11-8 Caldwell family
ecomap.
(continued)
3921_Ch11_321-350 05/06/14 11:10 AM Page 345
emotionally, both children have had to take on family roles
that their parents used to manage. For example, the daugh-
ter, Kira, now must do more of the family meal preparation
and house cleaning. The son, John, has to do all of the
yard work, which has made it harder to spend time with
his friends. Both teenagers are starting not to do as well
in school because of the constant tension in the home
and their fears that their parents may divorce. Because
Mr. Caldwell’s trauma is so severe, it is highly likely the other
members of the family will suffer secondary traumatization.
This family’s response to the trauma of Mr. Caldwell
from war cannot be understood or treated by focusing on
just his care (microsystem). His family members (mesosys-
tem) can provide key contextual information about past
traumatic events and experiences that can explain current
responses. In fact, they are a central reason why Mr. Caldwell
wants to get better and resume more of his leadership
roles within the family. As he has been spiraling downward,
the rest of the family has followed and all now report dete-
riorating mental health.
The boundaries or borders for this family may both be
protective and act as a barrier to seeking help. It may be
that Mrs. Caldwell feels it is disloyal to talk about her hus-
band’s problems with an outsider. Mr. Caldwell has many
fears about admitting his difficulties and feels ashamed
about how his problems have affected his wife. Mrs. Cald-
well is afraid to ask for help because she does not want
her husband to feel any more embarrassment than he
does already. They are both suffering in silence, reluctant to
talk to each other, or to anyone else. The nurse will have to
create a trusting relationship to overcome this natural reluc-
tance to share family secrets. One of the things that may
help is to explain how providing this information may en-
hance the medical team’s ability to provide quality care.
In this case, the spousal relationship has suffered be-
cause of Mr. Caldwell’s trauma. Wartime separation and
reunion, and then later problems with PTSD from combat,
have created some marital dysfunction that was not there
before. In this situation, the marital relationship as a subset
within this family is the most problematic area. By helping
this family improve this one area of its family functioning
through appropriate referral, the nurse could have a great
impact on the rest of the family subsystems. Because this
is a new experience for Mr. and Mrs. Caldwell, they are not
quite sure how to deal with it, plus they are reluctant to
seek outside help at this time.
Assessment and Intervention Considerations:
The assessment and intervention for the Caldwell family
focuses on PTSD and secondary trauma. As we can see
clearly from this case, although Mr. Caldwell’s traumatic
exposure occurred some time ago, undiagnosed or inade-
quately treated PTSD could complicate his surgical recov-
ery. PTSD is associated with more physical health problems
and somatic symptom severity (Hoge, Terhakopian, Castro,
Messer, & Engel, 2007). Although chronic widespread pain
(CWP)—defined as pain in various parts of the body and
fatigue that lasts for 3 months or longer—has thus far been
documented only in veterans from the first Gulf War, the
potential for this phenomenon to emerge in current com-
bat veterans is high. CWP is associated with greater health
care utilization and a lower quality of life (Forman-Hoffman
et al., 2007). Researchers working for the Veterans Admin-
istration have documented that a substantial percentage of
Iraq and Afghanistan veterans experience ongoing or new
pain, of which 28% report is severe (Gironda, Clark,
Massengale, & Walker, 2006).
In this instance, postoperatively Mr. Caldwell may be
having more problems with pain perception, pain toler-
ance, and other kinds of untreated chronic pain. In addi-
tion, PTSD symptoms may make it difficult for the nurse to
communicate with the patient, may reduce the patient’s
active collaboration in evaluation and treatment, and
reduce patient adherence to medical regimens.
Assessment:
Because trauma is underrecognized, patients with PTSD
are not properly identified and are not offered education,
counseling, or referrals for mental health evaluation. There
are simple methods to screen patients who may have
undetected PTSD. As noted, one easy to use tool is the
Primary Care PTSD Screen (Prins et al., 2004), consisting
of four questions preceded by the following introduction:
“In your life, have you ever had any experience that was
so frightening, horrible, or upsetting that, in the past
month, you...
1. Have had nightmares about it or thought about it
when you did not want to?
2. Tried hard not to think about it or went out of your
way to avoid situations that reminded you of it?
3. Were constantly on guard, watchful, or easily startled?
4. Felt numb or detached from others, activities or your
surroundings?”
The screen is positive if the patient answers yes to any
three items.
Next, assess the family for possible symptoms of sec-
ondary traumatization. How are Mr. Caldwell’s wife and
children responding to his symptoms? What symptoms are
they experiencing as a result of his difficulties? Identify how
346 Families Across the Health Continuum
3921_Ch11_321-350 05/06/14 11:10 AM Page 346
roles may have shifted for this family given Mr. Caldwell’s
current circumstances. Is the family still functioning as a
strong cohesive unit? How have things changed? How
open is this family to working with the nurse? What might
help facilitate this?
Intervention:
Provide education about PTSD and secondary trauma.
Because the family’s participation is essential in identifying
symptoms of PTSD and planning treatment, the nurse
must create an environment that is supportive and inclu-
sive of family members in order to work in partnership with
the family. There are several sites on the Internet that can
help the nurse develop educational fact sheets that can
be shared with patients and families. The Veterans Affairs
National Center for PTSD and the Defense Department’s
Walter Reed Army Medical Center collaborated to develop
the Iraq War Clinician Guide (available at www.ncptsd.org/
topics/war.html). The next step that the nurse should take
in intervening with the Caldwell family is referring all family
members for further care. Set up a plan for referring to a
PTSD specialist those patients who show signs of potential
PTSD and who are amenable to receiving additional evalu-
ation or counseling. In this instance, the nurse could provide
the family with a list of possible options. Many local areas
have lists of returning veteran’s counseling services that
include counseling for couples and families. Involve the
family in the plan of follow-up care.
SUMMARY
■ Trauma affects the entire family system.
■ Post-traumatic stress disorder (PTSD),
which is a response to trauma, is more likely
to develop when resiliency traits are lacking
either before or after the trauma.
■ PTSD can be acute or chronic and can occur
months, even years, after a disaster or trau-
matic event such as war. PTSD affects both
children and adults, with adults more likely
to have flashbacks of the incident, and chil-
dren more likely to develop hypersensitivity
and avoidance of similar situations (e.g.,
avoiding cars after a motor vehicle accident).
■ The Ecological Systems Theory can guide
nursing assessment and interventions to help
families cope effectively with trauma.
■ When one or more family members are trau-
matized by an experience, all family members
and family relationships are affected.
■ The more severe the trauma an individual
family member suffers, the more likely the
other members of the family are at risk for
secondary trauma.
■ The family response to trauma of one or
more of its members cannot be understood
or treated by focusing on individual family
members alone. Family members can provide
key contextual information about past trau-
matic events and experiences that help explain
current responses.
■ Community systems can prevent, treat, and
measure negative outcomes to traumatic
events. If community agencies are not well
trained and prepared, the risks for undetected
and untreated PTSD increase.
■ Larger political and social systems can influ-
ence and be influenced by individual, family,
and community trauma. If nations experience
severe trauma, they, as a whole, show signs of
PTSD.
■ Nursing focuses on the individual, family,
community, and societal reactions to trauma
in order to optimize positive outcomes and
prevent or treat negative implications.
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U N I T
3
Nursing Care
of Families in
Clinical Areas
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353
Family Nursing With
Childbearing Families
c h a p t e r 12
Linda Veltri, PhD, RN
Karline Wilson-Mitchell, RM, CNM, RN, MSN
Kathleen Bell, RN, MSN, CNM, AHN-BC
C r i t i c a l C o n c e p t s
■ Childbearing family nursing is not synonymous with obstetrical nursing, which only considers the woman as the client
and as the family as context for care. In contrast, childbearing family nursing considers the family as client, the family
as context for the care of its members, or both. Childbearing family nursing primarily focuses on health and wellness
rather than on procedures and medical treatment.
■ Nurses must understand and utilize multiple theories to plan and guide nursing care for childbearing families.
■ Nurses must understand the impact that social policy, available resources, and geographical location have on child-
bearing families.
■ The holistic care of these families is best provided with an approach that acknowledges the social determinants of
health and the integration of all of the members of the health care team and community resources.
■ Nurses need to be aware of stressors childbearing families encounter before, during, and after reproductive events so
they can anticipate, identify, and respond to needs appropriately.
■ The family constellation and the definition of family depend on the culture, worldview, sexual orientation, and per-
spective of the family. Consequently, childbearing family nursing necessitates demonstrating respect and cultural
competence.
■ Nursing care for adoptive families should be provided in a manner similar to that which is provided to biological
families. Nurses should recognize and meet these families’ special needs, regardless of the family constellation.
■ Nurses caring for childbearing families experiencing infertility must consider, understand, and address the family’s
emotional and physical needs.
■ Understanding the many ways families experience grief and loss allows nurses to advocate for practices that best
facilitate childbearing as a transitional event in the life of the family.
■ A process of bereavement should be anticipated with perinatal loss, adverse perinatal outcome, diagnosis of congeni-
tal or genetic disorders, palliative care, or the birth of a special needs child.
(continued)
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Before the onset of professional nursing in North
America during the late 19th century, caregivers
for childbearing families were women. Female fam-
ily members, in-laws, neighbors, friends, and mid-
wives came to the home to encourage, support,
and nurture a woman during and after childbirth
(Burst, 2004; Mander, 2004; Varney, Kriebs, &
Gregor, 2004). During this time, many of these
women midwives were settlers who followed the
European colonists and were African slaves, or First
Nations/Native Americans. Similarly, in Canada,
Canadian pioneer and Aboriginal midwives also at-
tended births up through the 1940s. It was these
women caregivers who maintained family functions
of the household, tended to new babies and moth-
ers’ other children, and provided postpartum phys-
ical care. During these same years, the father’s role
in childbirth was limited to announcing labor had
begun and seeking assistance from other women
(Mander, 2004). Although male obstetricians
emerged as primary clinical providers of birth man-
agement and influenced both maternity education
and health care policy in the 1860s, male family
members, friends, and children were excluded from
the childbirth experience until the 1970s. This prac-
tice was justified by the belief that nonmedical par-
ticipants increased the risk of introducing infection
into the perinatal setting.
Beginning in the late 1960s, families became in-
creasingly knowledgeable about childbearing and
desirous of a more satisfying birth experience as a
family event. The families became savvy health care
consumers who found hospital routines and policies
too restrictive if they required strict adherence
to newborn feeding and sleeping schedules, kept
fathers and siblings out of the delivery room, or sep-
arated parents from their newborns. In response, in-
formed families lobbied for changes in childbearing
practices; they used evidence to support not separat-
ing mothers and babies immediately after delivery,
as well as other hallmark findings demonstrating im-
proved parent-child attachment with immediate and
frequent contact between mothers, fathers, and sib-
lings and their newborns (de Chateau, 1976, 1977;
Klaus et al., 1972; Martell, 2006). Largely as a result
of the women’s rights and health reproductive
movement (Morgan, 2002), families presented com-
pelling arguments for hospitals to support exclusive
breastfeeding, kangaroo-care or “skin-to-skin” baby
carrying, and delayed cord clamping (Britton,
McCormick, Renfrew, Wade, & King, 2007; Gray,
Miller, Philipp, & Blass, 2002; Gray, Watt, & Blass,
2000; Hutton & Hassan, 2007; Mercer et al., 2006).
In time, nurses, hospitals, and other health care
providers for women began to recognize the effect
reproductive events have on all family members, as
well as the reciprocal influence of the family on the
parents and infants. This recognition has resulted
in inclusion of family concepts into nursing care of
childbearing families. With the trend for increased
family education about reproductive events, in-
creased responsibility for family members to plan
for care during pregnancy and delivery, and shorter
hospital stays after birth, postpartum care is return-
ing to family care within the context of the home
with nursing guidance, rather than being medically
based in a hospital. This shift in focus from caring
for the individual woman as client toward consid-
eration and inclusion of the family in care from
preconception to the postpartum period is known
354 Nursing Care of Families in Clinical Areas
C r i t i c a l C o n c e p t s ( c o n t . )
■ When a mother or a newborn has serious threats to health, family nurses act to maintain and promote family rela-
tionships. Threats to the health and integrity of the family become a reality when separation from family members
occurs (e.g., apprehension of children due to child protection risks or incarceration of the mother).
■ Understanding the effect a new baby has on all family members allows nurses to work to help parents develop
realistic expectations about themselves, each other, and their children, as well as to identify appropriate support and
resources.
■ Postpartum depression is treatable and recoverable. Therefore, family nurses must work diligently to identify and refer
women for appropriate treatment as early as possible to reduce the effects of maternal depression on the woman
and her family.
■ Family nurses can be leaders in practice, policy development, and research related to childbearing families.
3921_Ch12_351-386 05/06/14 11:13 AM Page 354
as childbearing family nursing. The historical per-
spective is outlined in Box 12-1.
Notably, the practice of childbearing family
nursing is not synonymous with obstetrical nurs-
ing. Obstetrical nursing considers the woman as
the client and views the family as the context for
care. Childbearing family nursing, by contrast,
considers the family as the client and the family
as context for the care of its members. It is a
health and wellness, rather than an illness, model
of care. Similarly, childbearing family nurses take
a holistic approach to care; they consider the
woman and her family’s physical, mental, emo-
tional, spiritual, social, and cultural indicators of
health. Although the woman, as an individual, is
most affected by the event of childbirth, the fam-
ily unit is intimately involved in that event. For
example, the addition of a new human being into
the world involves caring for the minds, bodies,
and spirits of all those who will be entrusted to
nurture the newborn. Becoming a part of this
transitional time through engagement in the
Family Nursing With Childbearing Families 355
BOX 12-1
Historical Perspective of Childbearing Family Nursing
Historical Perspective
Late 1800s: Industrialization
■ Families moved to more urban areas; household size
and functions diminished.
■ Traditional networks of women were not always avail-
able, and mothers needed to replace care previously
carried out in the home.
■ Childbearing still occurred at home for many middle-
class families (Leavitt, 1986; Wertz & Wertz, 1989).
■ European colonists, African slaves, and First Nations/
Native Americans served as midwives.
First Third of the 20th Century
■ The hospital became the place for labor, birth, and early
postpartum recovery for middle-class families.
■ Many immigrant and working-class urban families con-
tinued to have newborns at home with their traditional
care providers.
■ An impetus to the development of public health nursing
was concern for the health of urban mothers and babies.
■ Realizing that the health needs of all the family mem-
bers were intertwined, early public health nurses consid-
ered families, not individuals, as their clients.
1930s Through the “Baby Boom” of the 1950s
■ In Canada, Canadian pioneer and Aboriginal midwives
attended births up through the 1940s.
■ With the dramatic shift of births to hospitals, family in-
volvement with childbearing diminished (Leavitt, 1986).
■ Concerns about infection control contributed to separa-
tion of family members.
■ Family members, especially males, were forbidden to
be with women in the hospital.
■ Babies were segregated into nurseries and brought out
to their mothers only for brief feeding sessions.
■ Nurses focused on the smooth operation of postpartum
wards and nurseries through the use of routine and
order.
■ Despite these inflexible conditions, families tolerated
them because they believed that hospital births were
safer for mothers and newborns.
1960s to 1970s
■ Families and health care professionals questioned the
need for heavy sedation and analgesia for childbearing
and embraced natural childbirth.
■ A feature of natural childbirth was the close relationship
between the laboring woman and a supportive person
serving as a coach; in North America, husbands as-
sumed this supportive role (Wertz & Wertz, 1989).
■ Expectant parents actively sought out physicians and
hospitals that would best meet their expectations for fa-
ther involvement and the control over childbearing
began to shift from health care professionals to families.
■ Some nurses were skeptical about the changes families
demanded, but others were enthusiastic about in-
creased family participation.
■ Many hospital-based maternity nurses began to con-
sider themselves to be mother-baby nurses rather than
nursery or postpartum nurses, and labor and delivery
nurses often collaborated with family members in help-
ing women cope with the discomforts of labor.
1980s to the Present
■ Klaus and Kennel’s research (1976) served as the im-
petus for the growth of family-centered care (American
College of Obstetricians and Gynecologists and the In-
terprofessional Task Force on Health Care of Women
and Children, 1978).
■ Today, promotion of family contact is becoming the
hallmark of childbearing care.
■ Many hospitals have renamed their obstetrical services,
using names such as Family Birth Center to convey the
importance of family members in childbearing health
care even though obstetrical care is becoming more
dependent on technology.
3921_Ch12_351-386 05/06/14 11:13 AM Page 355
woman and family’s lived experience throughout
its entirety versus remaining at a functional level
by “doing for” the client is an emerging role for
childbearing family nurses. As a result, nurses and
families are being challenged by societal and
health care system changes to adapt and expand
their perspectives regarding family health. This
new emphasis requires nurses to move away from
a linear model of interventions aimed at moving
clients from a state of disease/illness to wellness,
toward a shared experience of controlling or tran-
scending a threat to health and helping the
client/family integrate their experience as one
with purpose and meaning (LeVasseur, 2002). In
other words, childbearing family nurses are
changing their focus from “caring for” to “caring
about” families (Cronqvist, Theorell, Burns, &
Lutzen, 2004). Using a holistic and transpersonal
approach to understanding the woman’s entire
mind/body/soul during times of health threats of-
fers one of the most fulfilling roles for the nurse
and it may be one of the first experiences of em-
powered caring for the client (Ward & Hisley,
2009).
Family nursing with childbearing families cov-
ers the period before conception, pregnancy,
labor, birth, and the postpartum period. Child-
bearing family nursing traditionally begins with a
family’s decision to start having children and con-
tinues until parents have achieved a degree of rel-
ative comfort in their roles as parents of infants
and/or have ceased the addition of new children to
their families. Often, childbearing family nursing
is expanded to include the periods between preg-
nancies and includes other aspects of reproductive
care such as family planning, infertility, perinatal
loss, sexuality, adoption, foster care, and parenting
grandchildren. Decisions and changes surrounding
childbearing vary for families throughout the re-
productive cycle. Factors driving these decisions
or changes include prevailing health policies and
the family’s cultural, socioeconomic, and psycho-
logical needs. As a result, the beginning and end
points of the reproductive period may be different
for each family.
Childbearing family nursing practice offers
nurses the opportunity to engage in transpersonal
care by applying the nursing process of assessment,
diagnosis, planning, implementation, and evaluation
in a new way to orient knowledge and direct care
activities to the entire childbearing family. It is
through this process that nurses assess a family’s
knowledge and confidence to manage the health
concerns, diagnose alterations in health from the
client’s viewpoint, conceptualize the outcome as
the client and family sees it, and support the client
in making the changes needed either to restore
health or transcend the threat, concern, or event.
The final step of this process is evaluation of on-
going maintenance of health and wellness as it is
lived by the client and family (Ward & Hisley,
2009). When childbearing family nurses incorpo-
rate transpersonal care in this way, the essence of
family-centered care, which involves placing fam-
ily relationships, coping mechanisms, values, pri-
orities, and perceptions at the center of the health
event or concern, is maintained.
The focus of childbearing family nurses is cen-
tered on family relationships and the health of all
family members. Therefore, nurses involved with
childbearing families use family concepts and the-
ories as part of developing the plan of nursing
care. This chapter starts by presenting theoretical
perspectives that guide nursing practice with
childbearing families. It continues with an explo-
ration of family nursing with childbearing fami-
lies before conception through the postpartum
period. The chapter concludes with implications
for nursing practice, research, and policy, along
with two case studies that explore family adapta-
tions to stressors and changing roles related to
childbearing.
THEORY-GUIDED, EVIDENCE-BASED
CHILDBEARING NURSING
Application of theory to family health situations
during childbearing can guide family nurses in
making more complete assessments and planning
interventions congruent with the pattern of events
during childbearing. Several of the theories dis-
cussed in Chapter 3 contribute to nurses’ under-
standing of how families grow, develop, function,
and change during childbearing. Two of these the-
ories in particular, Family Systems Theory and
Family Developmental and Life Cycle Theory, are
especially applicable to childbearing families. A
brief summary of these theories and their applica-
tion to childbearing families follows.
356 Nursing Care of Families in Clinical Areas
3921_Ch12_351-386 05/06/14 11:13 AM Page 356
Family Systems Theory
Family Systems Theory provides a framework for
viewing the family as a system: as an organized whole
and/or as individuals within the family who form in-
teractive and interdependent systems. Four main
concepts underlie this theory: (1) all parts of the
system are interconnected, (2) the whole is more than
the sum of the parts, (3) all systems have some form
of boundaries or borders between the system and its
environment, and (4) systems can be further organ-
ized into subsystems. Family systems are primarily
designed to maintain stability, and a change in one
member of the family affects all of the family.
Becoming parents or adding a child brings stress
to a family by challenging family stability, not only
for the nuclear and extended family systems them-
selves but also for the individual members and sub-
systems of the family. As new subsystems are created
or modified by pregnancy and childbirth, a sense of
disequilibrium exists until a family adapts to its new
member and re-achieves stability. For example,
changes in the husband-wife subsystem occur as a
response to development of the new parent-child
subsystems.
Imbalance, or disequilibrium, occurs while adjust-
ments are still needed and new roles are being
learned. Families with greater flexibility in role ex-
pectations and behaviors tend to experience these
periods of disequilibrium with less discomfort. The
greater the range or number of coping strategies
available to the family, and the greater the ability and
support available to engage in various family roles,
the more effective the family’s response will be to
both internal strains and external stress associated
with childbearing. External stresses, such as con-
cerns about outside employment, child care, and lack
of health insurance, may be important in predicting
family disequilibrium. Internal strains such as an ill
or special needs child or unhealthy habits, such as
substance abuse, may tax family coping mechanisms
to the breaking point. Therefore, it is imperative
that nurses identify both present and potential family
stressors and assess the effect of stressors on family
stability.
Family Systems Theory is especially effective for
use by childbearing family nurses because following
childbirth, families who are in a state of change and
readjustment tend to have more permeable bound-
aries and are more likely to be open to the outside
environment. This openness stems from the need
for additional resources beyond what the family can
supply for itself. Consequently, a family in transi-
tion is apt to be engaged in more interactions with
systems outside the family and may become more
receptive to interventions such as health teaching
than it would be at other times in the family life
cycle (Martell, 2005). This openness of family
boundaries allows nurses more access to the family
for assessment, diagnosis, and health promotion.
On the other hand, childbearing family nurses
should be aware of very closed or enmeshed fami-
lies who may have nonpermeable boundaries and
reject outside influences, including nursing care.
Families can become closed because they interpret
the outside environment and systems as hostile,
threatening, or difficult to cope with. These fami-
lies are challenging for nurses because they are less
readily accessible or responsive to family nurses.
Nurses working with childbearing families
from a systems perspective view the family as the
client and aim to assist families to maintain and
regain stability. Therefore, assessment questions
should be focused on the family as a whole. At the
same time, it is important to remember that fam-
ily nurses also work with the individuals and the
subsystems within the family. Interventions need
to be directed at the various systems and levels of
subsystems within the family. For example, a fam-
ily ecomap will help the nurse see how individual
members and the family as a whole relate to one
another and to the community around them. Un-
derstanding the family process and functioning
through careful assessment of the family as a
whole and the individual family members allows
Family Nursing With Childbearing Families 357
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the nurse to offer intervention strategies that will
help provide stability in the family’s everyday
functioning.
Family Developmental and Life
Cycle Theory
Duvall’s (1977) Family Developmental and Life
Cycle Theory described a process of developing
over time that is predictable and yet individual,
based on unique life circumstances and family in-
teractions. Although the life cycle of most families
around the world follows a universal sequence of
family development, it is important for childbear-
ing family nurses to recognize that wide variations
exist in the timing and sequencing of family life
cycle phases (Berk, 2007; Carter & McGoldrick,
2005; Duvall, 1977). Many present-day childbear-
ing families in North America do not fit into the
classic sequence and timing of family developmen-
tal stages and tasks originally described by Duvall
and Miller (1985). For example, families may be
blended, with one or both partners having children
from a previous relationship. Other types of non-
traditional family structures include adoptive fam-
ilies; communal or multigenerational families; and
parents who may be cohabitating, unmarried, sin-
gle, of the same sex, or have children born later
in life (Berk, 2007; McKinney, James, Murray,
Nelson, & Ashwill, 2013). As a result, nontradi-
tional and high-risk families such as those experi-
encing unusual levels of stress from marital conflict
and divorce, violence, substance abuse, having a
child with special needs, or being an adolescent par-
ent require care that is different from that needed
by traditional families (McKinney et al., 2013).
Despite how diverse the family is today, Family
Developmental and Life Cycle Theory remains a
helpful guide for childbearing family nurses be-
cause it addresses the patterns of adaptation to par-
enthood that are typical for many families. This
theory has relevance for family nurses regardless of
how families are structured, because the essential
tasks families must perform to survive as healthy
units are generally present to some extent in all
families (Pillitteri, 2003).
According to Duvall’s (1977) Family Develop-
mental and Life Cycle Theory, family changes
occur in stages during which there is upheaval
while adjustments are being made. What occurs
during these stages is generally referred to as a
developmental task. The “Childbearing Family
With Infants” stage is pertinent to childbearing
family nursing practice because it is during this
stage that childbearing families must accomplish
nine specific tasks in order to grow and achieve
family well-being. These nine tasks for child-
bearing families and nursing interventions are
explained in the following subsections.
Task One: Arranging Space (Territory)
for a Child
Arranging space (territory) involves families making
space preparations for their infants. Families often
accommodate newborns by moving to a new resi-
dence during pregnancy or the first year after birth
or by modifying their living quarters and furnish-
ings. Families may delay or avoid space preparations
for a new baby for several reasons. For example, busy
families, those who fear or have experienced prior
fetal loss, and families involved with adoption or fos-
ter placement may delay or avoid space preparations.
For some groups, such as Orthodox Jews, prepara-
tion for a baby’s material needs, such as blankets and
diapers during pregnancy, is not acceptable; it may
mean bad luck or misfortune for the baby (Cassar,
2006). The lack of space preparation may also result
from the parents not having accepted the reality of
the coming baby (denial). It may also emerge from
various social risks or health disparities, including
expensive health care needs incurred by other family
members; inadequate, unsafe housing arrangements
or homelessness; underemployment or poverty; re-
cent immigration; and incarceration. Adolescent
parents may not make space arrangements because
of denial of the pregnancy or fear of repercussions
from their families if pregnancy is revealed.
Family Nursing Interventions
■ Inquire about the safety and health of the
family’s home environment, food, security
(including freedom from domestic violence),
space arrangements made for baby, and other
child care resources, community resources,
or other support systems.
■ Refer families who are homeless or live in in-
adequate or unsafe housing to appropriate
resources for obtaining safer housing.
■ Inquire about the families’ thoughts, values,
beliefs, and possible fears about making prepa-
rations for the anticipated arrival of the baby.
■ Assist families to explore and manage their
fear about survival or loss of the baby and
358 Nursing Care of Families in Clinical Areas
3921_Ch12_351-386 05/06/14 11:13 AM Page 358
then mobilize resources to help them cope so
that family development can continue.
■ Assist adolescents to find ways to communi-
cate with their families and make plans for
the future placement and well-being of the
infant and the adolescent parents.
■ Work with prisoners, interested stakeholders,
and state/federal penal systems to establish
units where newborns and mothers can stay
together to encourage bonding and breast-
feeding while the mother is incarcerated.
Task Two: Financing Childbearing
and Child Rearing
Childbearing results in additional expenses and
lower family income. American families, having ex-
perienced two economic downturns since the start
of the 21st century, are finding the decision to bear
and the ability to raise children increasingly finan-
cially difficult (Guttmacher Institute, 2009; Oberg,
2011). Low-income families and children, espe-
cially African Americans and those of Hispanic de-
scent, have been disproportionally burdened by
these recessions and continue to struggle just to
make ends meet (Bruening, MacLehose, Loth,
Story, & Neumark-Sztainer, 2012; Oberg, 2011).
Financial stresses can be even harder for mothers
without partners, women who provide most of the
income for their families, mothers who are fleeing
domestic violence, or mothers experiencing un-
planned pregnancy. Families with precarious im-
migration status (including refugee claimants or
migrant workers) may likewise experience severe
financial stress due to lack of health insurance cov-
erage (Simich, Hamilton, & Baya, 2006). These
populations are particularly vulnerable to fiscally
restrictive social policies aimed at limiting systemic
health care costs. For example, the Canadian Im-
migration Bill C-31 reduces accessibility to Interim
Federal Health Program (IFHP) coverage and lim-
its eligibility for immigration and refugee status,
thus producing increases in uninsured newcomers
as a consequence (Parliament of Canada, 2012).
Health care surrounding childbirth can add an-
other layer of financial stress on a family as the pro-
portion of Americans with employer-sponsored
health insurance has declined in the past 10 years,
particularly for adults (Holahan, 2011). Addition-
ally, health care providers may not be able to accept
patients who are uninsured, insured by federal
or state programs, or cannot pay out of pocket for
obstetrical services, further increasing the financial
strain on families. The recently passed Affordable
Care Act (H.R. 3590) will help alleviate some of the
financial stressors childbearing families face by re-
ducing the number of uninsured Americans and in-
creasing accessibility for maternal-child health care
services (U.S. Department of Human and Health
Services, 2013). Canadians are eligible to be in-
sured by a publicly funded universal health care
plan, which reduces a portion of financial stress ex-
perienced by childbearing families.
While most employed women miss some em-
ployment during childbearing, many return to the
labor force or increase the number of hours worked
following childbirth (Mattingly & Smith, 2010).
Others, especially those of high socioeconomic sta-
tus or with a college/university education, may
choose to delay reentry into the workforce or forego
possible career advancement during childbearing
(Mattingly & Smith, 2010). Regardless of the rea-
son, there are many consequences of missed employ-
ment for woman beyond loss of earnings during the
childbearing years. Other consequences are detailed
in Box 12-2.
Men traditionally have been more likely to take
on additional paid work, leaving them less time for
family matters, which may be a source of more
anxiety and stress for the family (Martell, 2005;
Mennino & Brayfield, 2002). The family’s ability to
supplement income in this manner has been severely
restricted following the second collapse of the U.S.
Family Nursing With Childbearing Families 359
BOX 12-2
Consequences of Maternal Unemployment
During the Childbearing Years
■ Earnings lost during the times of unemployment.
■ Loss of on-the-job training opportunities and opportu-
nities for advancement in career.
■ Depreciation of skills and experience, often followed by
a loss of confidence about returning to work.
■ Loss of work-related benefits if job is subsequently lost.
■ Leave taken before childbirth may reduce the leave
time available postpartum.
■ Reinforcement of traditional roles and responsibilities
in two-parent, heterosexual families where the father
takes the breadwinner role.
Source: Adapted from Galtry, J., & Callister, P. (2005). Assessing
the optimal length of parental leave for child and parental
well-being. How can research inform policy? Journal of Family
Issues, 26(2), 219–246.
3921_Ch12_351-386 05/06/14 11:13 AM Page 359
economy in 2007. Since that time, unemployment
levels have remained high particularly for men and
low-income families, which creates added strain on
families (Bruening et al., 2012; Mattingly & Smith,
2010). Though less severe in Canada, higher than
usual unemployment levels have presented chal-
lenges within this country too. In response, women
are entering the workforce or increasing the number
of hours worked and families may fall back onto sav-
ings, increase their debt, or alter their lifestyles to
match changing levels of income. Financial stresses
are even harder for mothers without partners or for
women who provide most of the income for their
families. Adolescent mothers are especially prone to
financial difficulties because childbearing may dis-
rupt their education, which increases their risk for
future poverty (McKinney et al., 2013).
Family Nursing Interventions
■ Assist families to find high-quality resources,
such as nutrition programs, food banks, family
shelters, counseling or settlement services, and
government-funded prenatal clinics, including
midwifery clinics, community health centers,
or public health clinics that support families
with limited socioeconomic resources.
■ Identify barriers to prenatal care, such as cul-
tural differences, lack of transportation or in-
surance coverage, child care, hours of service
that conflict with family employment, and dif-
ficulty obtaining or using health care benefits.
■ Assist families to find safe and appropriate
child care by providing culturally appropriate
information and resources in their preferred
language.
■ Fully inform families about changes in their
health care options resulting from reform
and redesign of the health care system.
Task Three: Assuming Mutual Responsibility
for Child Care and Nurturing
The care and nurturing of infants bring sleep disrup-
tions, demands on time and physical and emotional
energy, additional household tasks, and personal dis-
comfort for caretakers. New parents spend most of
their time caring for children, thus decreasing both
leisure and downtime, both of which are important
to maintain balance in the family. Parents can expe-
rience role strain and role overload from combining
the increased work within the family with employ-
ment demands, or they may face difficulty arranging
and affording child care.
The first decision parents make regarding their
infant’s nutrition is whether to breastfeed or bottle
feed. With the exception of decreased feeding costs,
the benefits of breastfeeding have traditionally been
viewed in North America as being primarily for the
child. For example, breastfed babies are less likely
to develop diarrhea or ear infections and their rate
of sudden infant death syndrome (SIDS) is reduced
(Galtry & Callister, 2005; Godfrey & Lawrence,
2010). An association between breastfeeding and
enhanced cognitive development has also been re-
ported (Galtry & Callister, 2005). Worldwide, the
consensus is that “at least 6 months of exclusive
breastfeeding is best for both mother and child” and
that “the duration of breastfeeding that is best must
be individualized to the family unit” (Godfrey &
Lawrence, 2010, p. 1598). Breastfeeding likewise
benefits the mothers. Sufficient evidence confirms
that mothers who breastfeed for 1 year or longer ex-
perience multiple physiological and emotional ben-
efits. These benefits include reduced risk for breast
and ovarian cancer, osteoporosis, type 2 diabetes,
cardiovascular disease, rheumatoid arthritis, and
postpartum depression (Galtry &Callister, 2005;
Godfrey & Lawrence, 2010). Nurses must be aware
that the father’s role in the newborn feeding deci-
sion and his level of support and encouragement are
important factors in the success of the breastfeeding
relationship (Datta, Graham, & Wellings, 2012).
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In both the United States and Canada, the rate at
which women initiate breastfeeding is very high.
The rate at which women in North American are
exclusively breastfeeding at 6 months following birth
falls dramatically (Chalmers et al., 2009; Godfrey
& Lawrence, 2010). While the rate of breastfeed-
ing has increased in all demographic groups, cer-
tain populations are less likely to breastfeed,
including lower income; first-time mothers; blacks;
women participating in the Special Supplemental
Nutrition Program for Women, Infants, and
Children (WIC); those with high-school education
or less; and those employed full-time outside the
home (Godfrey & Lawrence, 2010; Johnston &
Esposito, 2007). It is crucial for childbearing family
nurses to understand the relationship between ma-
ternal employment and breastfeeding practices, in-
cluding the phenomenon of infant feeding with
breast milk that has been pumped while the mother
is away from the home.
For both mothers and fathers, one of the benefits
of having a period of time off from work following
childbirth is the increased ability for parents and
their newborn to establish a relationship through the
process of bonding and attachment. A vast body of
research on bonding and attachment, beginning
with Bowlby (1952), continued by Ainsworth (1967),
and popularized by Klaus and Kennel (1976), sup-
ports the premise that optimum child development
and well-being is achieved through early and ongo-
ing contact between mothers, fathers, and their new-
born. Mothers may automatically bond with their
newborns throughout pregnancy and early contact
within minutes of the child’s birth. By contrast, fa-
thers must work to establish a bond by being in-
volved in the delivery, as well as being available to
the infant to strengthen paternal attachment
through early contact with the infant in the months
following birth (Klaus, Kennell, & Klaus, 1995).
St. John, Cameron, and McVeigh (2005) have doc-
umented the benefits of early and ongoing contact
between fathers and infants. Additionally, Riley and
Glass (2002) found that more than half of women
who returned to paid employment within the first
year postpartum preferred father care over other
forms of nonrelative care. When this child care op-
tion is available to families, it can provide additional
opportunity for father-child attachment.
If an infant must be separated from the parents
due to prematurity or for medical or surgical inter-
ventions, interruptions in bonding may occur. To
promote optimal bonding in these special circum-
stances, the nurse must allow parents early and fre-
quent access to the baby and should encourage
parents to practice skin-to-skin contact, as well as
speaking to and holding their newborn. If these ac-
tions are not possible, photographs of the infant
should be sent to parents as soon as possible and
information updated frequently about the new-
born’s status. It is very important to reassure par-
ents that this disruption will not interfere with the
development of a positive, normal, and loving
relationship within the family (Ward & Hisley,
2009). The affectionate bond (or attachment) that
develops between parents and their children may
be one of the motivational driving forces for en-
gaging in infant care and nurturing even under dif-
ficult circumstances.
Family Nursing Interventions
■ Educate parents about the realities of parent-
ing, such as interrupted sleep and changes in
time management and family roles.
■ Teach the family to alternate who responds
to the baby’s needs, including feeding,
changing, and comforting.
■ Assist parents to develop new skills in care-
giving and ways of interacting with their ba-
bies, such as baby carrying, smiling, talking
to their infant, or making eye contact.
■ Observe for signs of attachment by listening
to what parents say about their babies and
by observing parent behaviors. Box 12-3
outlines parental behaviors that facilitate
attachment.
■ Refer families who do not demonstrate nur-
turing behaviors to other professionals, such
as local counselors, psychologists, social
workers, or childhood development experts,
who can provide more intensive intervention.
■ Promote culturally competent perceptions of
parenting behavior in minority cultures by
building partnerships in the ethnic commu-
nity of the families in care. Respected elders,
doulas, or community members may act as
translators and cultural brokers for the health
care team (Wilson-Mitchell, 2008).
■ Provide information about and support for
breastfeeding, including how to manage lac-
tation problems, feeding expressed breast
milk when appropriate, and referral for lacta-
tion consultation as necessary (Lawrence,
2010; Newman & Pitman, 2009).
Family Nursing With Childbearing Families 361
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Task Four: Facilitating Role Learning
of Family Members
Learning roles is particularly important for child-
bearing families, including those families that de-
part from traditional heterosexual structures. For
many couples, taking on the role of parents is a dra-
matic shift in their lives. Difficulty with adaptation
to parenthood may be related to the stress of learn-
ing new roles. Role learning involves coming to un-
derstand the expectations about the role, developing
the ability to assume the role, and taking on the
role. Women are most likely to feel the demands of
a parental role because they remain the primary
caretakers in child rearing (Nomaguchi & Milke,
2003). Another important demand that children
create, which affects women in particular, is in-
creased housework. Household chores associated
with children (laundry, cleaning, cooking, child
care) can lead to increased levels of distress for
women and can affect relationships between part-
ners. The relationship between gay men is also
affected when the couple takes on the parenting
role. For example, parenting can result in differing
energy levels between partners, especially if one
partner has assumed primary responsibility for child
rearing. The toll parenting has on their ability to be
good partners to each other influences their rela-
tionship (Giesler, 2012, p. 132).
The stress of parenting depends in large part on
whether the parents are married or identify as het-
erosexual or gay. For example, heterosexual single
mothers report higher levels of stress than married
mothers, due to fewer resources that limit coping
strategies (Nomaguchi & Milke, 2003). Moreover,
gay couples who decided to become parents re-
vealed that sacrificing lifestyle goals and desires—
such as travel and changes to the quality of their
sex life—was a source of stress in their partner re-
lationship (Giesler, 2012).
Family Nursing Interventions
■ Encourage expectant women to bring their
partners into the experience by sharing their
physical sensations and emotions of being
pregnant and restating the value of their role
as parents.
■ Assist and encourage pregnant couples to ex-
plore their attitudes and expectations about
the role(s) of their partner within the house-
hold and family after the baby arrives.
■ Encourage contact with others who are in
the process of taking on the parenting role,
especially if the parents are isolated, adoles-
cent, same sex, or culturally diverse and liv-
ing apart from traditional networks. Respect
culturally prescribed roles that resist (or re-
quire) change from the prevailing Western
cultural worldview.
■ Provide opportunities for fathers and other
partners or significant others in the family to
become skilled infant caregivers.
■ Empower parents by assisting them to recog-
nize their own strengths.
Task Five: Adjusting to Changed
Communication Patterns
Childbearing families experience changes in their
overall communication patterns in order for the
family to accommodate newborn and young chil-
dren. The role of “new parents” also requires
changes in communication patterns. As parents
and infants learn to interpret and respond to each
other’s communication cues, they develop effec-
tive, reciprocal communication patterns. Infant
cues may be so subtle, however, that parents
362 Nursing Care of Families in Clinical Areas
BOX 12-3
Parental Behaviors That Facilitate
Attachment
■ Arranges self or the newborn so as to have face-to-face
and eye-to-eye contact with infant.
■ Directs attention to the infant; maintains contact with
infant physically and emotionally.
■ Identifies infant as a separate, unique individual with
independent needs.
■ Identifies characteristics of family members in infant.
■ Names infant; calls infant by name.
■ Smiles, coos, talks to, or sings to infant.
■ Verbalizes pride in the infant.
■ Responds to sounds made by the infant, such as cry-
ing, sneezing, or grunting.
■ Assigns meaning to the infant’s actions; interprets
infant’s needs sensitively.
■ Has a positive view of infant’s behaviors and
appearance.
Sources: Adapted from Davidson, M. R., London, M. L., &
Ladewig, P. A. (2008). Olds’ maternal-newborn nursing and
women’s health across the lifespan (8th ed.). Upper Saddle
River, NJ: Pearson Prentice Hall; Lowdermilk, D. L., & Perry, S.
E. (2004). Maternity and women’s health care (8th ed.).
St. Louis, MO: Mosby; and Schenk, L. K., Kelley, J. H., &
Schenk, M. P. (2005). Models of maternal-infant attachment:
A role for nurses. Pediatric Nursing, 31(6), 514–517.
3921_Ch12_351-386 05/06/14 11:13 AM Page 362
may not be sensitive to cues until nurses point
them out (Martell, 2005; Schiffman, Omar, &
McKelvey, 2003). For example, many babies re-
spond to being held by cuddling and nuzzling,
but others respond by back arching and stiffen-
ing. Parents may interpret the latter as rejecting
and unloving responses, and these negative inter-
pretations may adversely affect the parent-infant
relationship.
The most extreme example of an inability to
adapt to changed communication patterns with
an infant is shaken baby syndrome. Whether in-
tentional or unintentional, shaking a baby as a
form of communication, in frustration or in an
attempt to accomplish discipline, will result in
traumatic brain injury. Most victims of shaken
baby syndrome are under 6 months of age, with
the source of abuse usually the father or a male
acquaintance of the mother (Ward & Hisley,
2009).
Communication between parents also changes
with the transition to parenthood. During the
years of childbearing, many couples devote con-
siderable time to career development. The time
demands of work coupled with parenting may af-
fect a couple’s relationship. While taking on the
everyday aspects of rearing children, parents often
do not give their couple relationship the attention
needed to sustain it (Martell, 2005). A marriage re-
lationship faces tremendous changes with the ar-
rival of the first child (Demo & Cox, 2000), and
communication can either fall to the wayside or be
the key way to make the new family structure func-
tion effectively.
Family Nursing Interventions
■ Educate parents about different infant tem-
peraments so they are able to interpret their
baby’s unique style of communication.
■ Teach parents how to recognize and respond
to their baby’s cues.
■ Encourage parents to talk to and engage in
eye contact with their baby.
■ Educate parents and infant caretakers
that it is never appropriate or safe to shake
a baby.
■ Incorporate couple communication tech-
niques into education of expectant parents.
■ Promote effective couple communication by
encouraging the partners to listen to each
other actively using “I” phrases instead of
blaming one another.
■ Encourage couples to set aside a regular
time to talk and to enjoy each other as
loving partners.
Task Six: Planning for Subsequent Children
After the birth, some couples will have definite,
mutually agreed-on plans with each other for ad-
ditional children, whereas others may have de-
cided against future children or be ambivalent
about family plans. The nurse should be aware
that many couples resume sexual intimacy before
the routine 6-week postpartum checkup. It is im-
portant for the nurse to inform the woman and
her partner that ovulation can resume as early as
2 weeks after childbirth, and pregnancy can
occur (Ward & Hisley, 2009). Further teaching
should be done regarding the safety of when to
resume intercourse after childbirth. Additionally,
childbearing family nurses are a valuable re-
source for those desiring information or demon-
strating a willingness to discuss family planning
options.
Family Nursing Interventions
■ Identify the power structure and locus of
decision-making control in the family when
discussing reproductive matters.
■ Consider a family’s cultural and religious
background before initiating a discussion
about contraceptive choices because these
factors often dictate whether the discussion is
appropriate.
■ Explore previously used methods of contra-
ception for appropriateness after childbirth.
■ Provide current, evidence-based information
about family planning options either during
pregnancy or in the immediate postpartum
period.
■ Debunk myths about breastfeeding as a
method of family planning.
■ When appropriate, refer to a nurse genetic
specialist for assessment and counseling if
there is a positive family history of hereditary
diseases.
Task Seven: Realigning Intergenerational
Patterns
The first baby adds a new generation in the family
lineage that carries the family into the future. Ex-
pectant parents change roles from being their par-
ents’ children to becoming parents themselves.
Childbearing may signify the onset of taking on
Family Nursing With Childbearing Families 363
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an adult role for adolescent parents and for some
cultural groups. Childbearing changes relation-
ships within extended families as parents’ siblings
become aunts and uncles, children from previous
relationships become stepsiblings, and parents be-
come grandparents.
Siblings typically experience many emotional
changes with the arrival of a new family member.
Feelings of confusion, hurt, anger, resentment,
jealousy, and sibling rivalry are common among
younger siblings, as is behavioral regression. Par-
ents should be prepared for these emotional up-
heavals with strategies that will help the sibling(s)
adjust to and accept the new baby.
Grandparents often provide the greatest amount
of support to families when a child is born. The de-
gree of their involvement may be linked to cultural
expectations. Hispanics, Asians (Zhao, Esposito, &
Wang, 2010), Africans, and many other cultures
highly value the extended family. The nurse should
be aware that in these cultures grandparents are a
strong influence on child-rearing practices and are
often intimately involved in daily family dynamics
(Lewallen, 2011).
Family Nursing Interventions
■ Assist new parents to seek support from
friends, family members, organized parent
groups, and work colleagues as a way to cope
with the demands of parenting.
■ Work with families to develop strategies that
maintain their couple activities, adult inter-
ests, and friendships.
■ Facilitate partner discussions about percep-
tions of extended family involvement in care
of the new child.
■ Facilitate new parents’ participation in the
decision-making process when health care
decisions are required for their child, such as
infant nutrition decisions.
■ Provide learning opportunities to help move
new parents from dependence to independ-
ence and self-reliance.
■ Offer sibling classes during childbirth educa-
tion for young children (2 to 8 years) and
provide parents with information on how to
help ease the transition.
■ Offer classes for grandparents during child-
birth education with topics varying from as-
sistance with household management to
current recommendations on infant position-
ing, feeding, and clothing, as well as positive
strategies to help them assume a supportive
(nonparenting) role.
Task Eight: Maintaining Family Members’
Motivation and Morale
After the initial excitement that often surrounds
the arrival of a new baby, families must learn to
adjust to and cope with the demands that caring
for the baby will have on their time, energy, sex-
ual relationship, and personal resources. Many
new moms experience postpartum fatigue, which
is a feeling of exhaustion and decreased ability to
engage in physical and mental work (Davidson,
London, & Ladewig, 2008). Women may be fa-
tigued for months due to many reasons: the blood
loss associated with birth, breastfeeding, sleep
difficulties, depression, the demands of multiple
roles, or returning to work outside the home, all
of which are compounded by the demands of in-
fant care (Davidson et al., 2008; Martell, 2005;
Troy, 2003). In addition, a relationship exists be-
tween maternal fatigue and postpartum depres-
sion (PPD), both of which affect family processes
(Davidson et al., 2008). The first 3 months after
childbirth are recognized as the most vulnerable
emotional period for mothers (Ward & Hisley,
2009) and, by extension, for their families. Dur-
ing this time and up through 1 year postpartum,
nurses must be alert for cues of depression from
the new mother and other family members.
In the months following childbirth, families
must be realistic about infant sleep patterns and
crying behaviors, the potential to experience lone-
liness, and changes in their sexual relationship.
For example, many young families, especially sin-
gle mothers, experience loneliness in the postpar-
tum period because they live in communities far
from their extended families. Some families have
recently moved into a new neighborhood and may
not have established friendships or a sense of com-
munity. Many ethnically diverse groups had spe-
cial support and recognition of the postpartum
period in their countries of origin, but in North
America replacements may not exist for tradi-
tional postpartum care (Martell, 2005). One way
mothers have found to overcome this lack of con-
nectedness is through social networking. For
many, Mommy blogs are satisfying and affirming
of their experiences, as well as distinct from the
dominant culture in which they live (Friedman,
2010).
364 Nursing Care of Families in Clinical Areas
3921_Ch12_351-386 05/06/14 11:13 AM Page 364
Family Nursing Interventions
■ Inform family members about ways to pro-
mote comfort, rest, and sleep, which will
make it easier for them to cope with fatigue.
■ Promote parental rest while a baby needs
nighttime feedings by encouraging parents to
alternate who responds to the baby.
■ Teach parents ways to cope with a crying in-
fant, which will boost family morale, increase
confidence, and allow family members to get
additional sleep.
■ Provide information on ways parents can re-
duce isolation and loneliness by seeking sup-
port from friends, family members, organized
parent groups, work colleagues, and commu-
nity support groups such as La Leche League.
■ Encourage parents to articulate their needs
and to find help in ways that support their
self-esteem as new parents.
■ Counsel couples about changes in sexuality
after birth and help them develop mutually
satisfying sexual expression.
■ Help families to develop strategies that main-
tain their couple activities, adult interests,
and friendships.
■ Take a proactive approach to prepare and ed-
ucate women and their families about signs
of postpartum depression.
Task Nine: Establishing Family Rituals
and Routines
Family rituals and routines consist of activities that
the family performs and teaches its members for
continuity and stability (Ward & Hisley, 2009). The
predictability of rituals helps babies develop trust.
Family rituals have been described as celebrations,
traditions, religious observances, and other symbolic
events. Routines are those behaviors associated with
daily activities pertinent to health (Denham, 2003).
Family rituals include the observance of celebrations
such as birthdays while family routines center on
meal, bedtime, and bathing; greeting and dismissal
routines (a kiss goodbye or goodnight); children’s
special possessions such as a treasured blanket; and
nicknames for body functions. For some families,
rituals have special cultural meanings that nurses
should respect. When families are disrupted or sep-
arated during childbearing, nurses can help them
deal with stress by encouraging them to carry out
their usual routines and established rituals related to
their babies and other children.
Family Nursing Interventions
■ Determine the special cultural meaning each
ritual has for the family and respect those
meanings.
■ Assess through observation and/or question-
ing, or as guided by an assessment survey
tool, how families observe or acknowledge
important days.
■ Encourage families to carry out their usual
routines and established rituals related to
their babies and other children.
■ Create a supportive environment that en-
courages parental knowledge and confidence
in caring for themselves and their infants.
■ Facilitate couple discussion of bedtime and
bathing routines, a baby’s special possessions
such as a treasured blanket, nicknames, lan-
guage for body functions, and welcoming rit-
uals such as announcements, baptisms,
circumcision, or other celebrations.
Family Transitions
Though it is not another task, transition is a major
concept in the Family Developmental Theory
(Duvall, 1977). Inherent in transition from one de-
velopmental stage to the next is a period of up-
heaval as the family moves from one state to
another. Historically, “transition to parenthood”
was thought by early family researchers to be a cri-
sis (LeMasters, 1957; Steffensmeier, 1982). The
idea of transition to parenthood as a crisis is being
abandoned. More recent work focuses on the tran-
sition processes associated with change in families.
In a more contemporary approach, transition to
parenthood has been defined as a long-term
process that results in qualitative reorganization of
both inner life and external behavior (Carter &
McGoldrick, 2005). In other words, changes occur
within the family and also in how the family inter-
acts with the external world. Current discourse on
family development is tempered by acknowledge-
ment that the definition of family is dynamic, with
intersections of race, class, and poverty influencing
how families address challenges such as disabled
children, disparity, discrimination, and illness
(Conger et al., 2012).
Nurse researchers have mostly focused on transi-
tion to motherhood. Even though other family
members experience the transition when a newborn
joins the family, concepts related to motherhood give
nurses insight into family transition. For example,
Family Nursing With Childbearing Families 365
3921_Ch12_351-386 05/06/14 11:13 AM Page 365
Nelson (2003) described the primary process of
transition as “engagement,” or opening one’s self to
the opportunity to grow and be transformed. Open-
ing of self relates to making a commitment to moth-
ering, experiencing the presence of a child, and
caring for the child. The notion of family transition
gives foundation to nursing interventions that pro-
mote parenting because opening of self involves the
real experience of being with and caring for the child.
Nurses who understand the stressors that families ex-
perience as they transition from one state to another
can use this theoretical concept to realize that a
mother or father may be frustrated over not being
able to cope in old ways.
Just as no one theory covers all aspects of nurs-
ing, no single theory will work for every situation
involving childbearing families. Therefore, nurses
must understand and utilize multiple theories to
plan and guide nursing care for childbearing fami-
lies. Major concepts from Family Systems Theory
and Family Developmental and Life Cycle Theory
help nurses organize assessments and manage the
predictable and unpredictable experiences child-
bearing families encounter.
CHILDBEARING FAMILY STRESSORS
Childbearing family nursing begins when a couple
anticipates and plans for pregnancy, has already
conceived, or is planning to adopt a child. Repro-
ductive life planning is an emotional task all types
of families—traditional nuclear, blended, gay
or lesbian, adoptive, heterosexual cohabitating
couples—must negotiate (Pillitteri, 2003). Any
pregnancy-related event such as infertility, adop-
tion, pregnancy loss, or an unplanned pregnancy
may be enough to disrupt the delicately formed
bonds of the family in this stage. Nurses need to
be aware of problems childbearing families might
encounter before, during, and after reproductive
events so that they can anticipate, identify, and re-
spond to needs appropriately.
Infertility
The ability to conceive is a major milestone in a
couple’s life (Wong, Pang, Tan, Soh, & Lim, 2012).
Both men and women perceive fertility to be a sign
of competence as reproductive human beings.
Therefore, the experience of infertility can be a life
crisis that disrupts a couple’s marital and/or sexual
relationship. Infertility, a common stress-producing
event, occurs when couples are unable to achieve a
successful pregnancy after 12 or more months of
unprotected, regular intercourse (American Soci-
ety for Reproductive Medicine, 2008; Steuber &
Solomon, 2008; Wong et al., 2012). It is a medical
and social problem that is of concern to childbear-
ing family nurses, especially in cultures where the
expectation of motherhood is strong and because of
the increasing trend of delayed childbearing in
Western societies (Balasch & Gratacos, 2012; Day,
2005; Sherrod, 2006; Wong et al., 2012).
Nurses should anticipate that infertile couples
will experience several different physical, emo-
tional, and psychological symptoms. Couples deal-
ing with infertility struggle between feelings of
hope and hopelessness, report feelings of being on
a roller-coaster ride, feel a sense of despair, and feel
that time is running out (Day, 2005; Eggertson,
2011; Sherrod, 2004). Problems with infertility
change a couple’s social relationships and support,
which may result in increased levels of depression
and psychological distress (Box 12-4).
The experience of infertility is stressful for both
men and women. Yet the way in which men and
women respond varies (Peterson, Newton, & Rosen,
2003). For example, many men believe their central
role during fertility treatment is to be a source of
strength and support for their partner (Malik &
366 Nursing Care of Families in Clinical Areas
BOX 12-4
Common Symptoms and Stressors Infertile
Couples May Experience
■ Irritability
■ Insomnia
■ Tension
■ Depression
■ Increased anxiety
■ Anger toward each other, God, friends, and other fertile
women
■ Feelings of rejection, alienation, stigmatization, isolation,
and estrangement
Sources: Adapted from Sherrod, R. A. (2004). Understanding the
emotional aspects of infertility. Implications for nursing prac-
tice. Journal of Psychosocial Nursing, 42(3), 42–47; and Day,
R. D. (2005). Relationship stress in couples. In P. C. McKenry
& S. J. Price (Eds.), Families and changes: Coping with stress-
ful events and transition (3rd ed., pp. 332–353). Thousand
Oaks, CA: Sage.
3921_Ch12_351-386 05/06/14 11:13 AM Page 366
Coulson, 2008). In contrast, women typically experi-
ence a higher risk for emotional distress than men.
Feelings of anger, anxiety, shame, loss of self-esteem,
grief, and depression are just some emotions that in-
fertile woman report experiencing (Wong et al.,
2012). Women want to spend time talking about their
infertility experience, whereas men report that talking
about it only increases their anxiety. As a result, men
dealing with infertility tend to talk, communicate, and
listen less than do women. Additionally, men cope
with infertility through avoidance and they may dis-
guise their feelings to protect themselves, their part-
ners, or both (Sherrod, 2006; Wong et al., 2012).
Testing and treatment for infertility is expen-
sive. Assisted reproductive therapy services pro-
vided in the United States and Canada, for the
most part, are not covered under most health in-
surance plans or by provincial health insurance.
Two Canadian provinces, Quebec and Ontario,
have made provision for in vitro fertilization, a type
of advanced assisted reproductive therapy, to be a
covered treatment under certain conditions only.
Infertility testing and treatment is also painful,
time consuming, and inconvenient. It can lead to a
loss of spontaneity and privacy in sexual activities,
which only compounds the stress and strain couples
are experiencing. Although every test or treatment
is another painful reminder of the inability to repro-
duce, it is nurses’ lack of knowledge and understand-
ing of the emotional aspects of infertility that really
frustrates infertile couples. As a result, couples in-
terpret nursing care to be insensitive and uncompas-
sionate when nurses focus primarily on physiological
or technical aspects of infertility rather than on emo-
tional needs (Lutter, 2008; Sherrod, 2004). There-
fore, it is vital that nurses caring for childbearing
families experiencing infertility understand, con-
sider, and address the emotional needs of couples
undergoing assessment, diagnosis, and treatment for
infertility. Families experiencing the crisis of infer-
tility are in as much need of a personal touch as they
are of technical competence and accurate, evidence-
based information about testing and treatment op-
tions. See Box 12-5 for specific nursing interventions
to help couples deal with infertility.
Adoption
Adoption is one of the many ways women, alterna-
tive couples, and those experiencing infertility or
other issues may become parents (Giesler, 2012;
London, Ladewig, Ball, & Bindler, 2007; Sherrod,
2004). Many different types of families adopt (U.S.
Department of Health and Human Services, n.d.),
including single parents, families formed by second
parents or with stepparents, transracial, transcul-
tural, relative, and lesbian, gay, bisexual, or trans-
gendered (LGBT) families. While adoptive mothers
and families may not experience the physical context
of pregnancy, they will have many of the same feel-
ings and fears as biological families (Fontenot, 2007).
Childbearing family nurses must be aware that all
parents react to the strong intense feelings and emo-
tions, ranging from happiness to distress, in the first
moments they meet their child, regardless of the way
in which a family is formed. Even though the child
is not biological or the parental relationship may not
be established immediately at birth, bonding can be
just as strong and immediate for adoptive parents
and children (Hockenberry, Wilson, Winkelstein,
Family Nursing With Childbearing Families 367
BOX 12-5
Nursing Interventions That Are Helpful
to Couples Dealing With Infertility
■ Avoid assigning blame to one partner or the other.
■ Encourage social support from friends, spouse, or sig-
nificant other.
■ Assess couples’ coping strategies, encourage open dis-
cussion between couples, suggest different coping
strategies.
■ Facilitate communication between couples in order to
give men, in particular, the opportunity to acknowledge
and express their feelings and process their response
to the infertility experience.
■ Provide information related to cost and insurance cov-
erage for treatment.
■ Suggest appropriate stress-relieving activities, such as
acupuncture or other complementary and alternative
therapies.
■ Refer to support groups and/or other professionals for
counseling.
Sources: Adapted from Sherrod, R. A. (2004). Understanding the
emotional aspects of infertility. Implications for nursing prac-
tice. Journal of Psychosocial Nursing, 42(3), 42–47; Sherrod,
R. A. (2006). Male infertility: The element of disguise. Journal
of Psychosocial Nursing, 44(10), 31–37; Smith, C., Ussher, J.,
Perz, J., Carmady, B., & de Lacey, S. (2001). The effect of
acupuncture on psychosocial outcomes for women experienc-
ing infertility: A pilot randomized controlled trial. Journal of
Alternative and Complementary Medicine, 17(10), 923–930;
and Wong, C., Pang, J., Tan, G., Soh, W., & Lim J. (2012). The
impact of fertility on women’s psychological health: A litera-
ture review. Singapore Nursing Journal, 39(3), 11–17.
3921_Ch12_351-386 05/06/14 11:13 AM Page 367
& Kline, 2006; Rykkje, 2007). Therefore, nurses car-
ing for women in the preadoptive and early posta-
doptive period must recognize and provide care in a
manner similar to that provided to biological moth-
ers during the prenatal and postpartum periods
(Fontenot, 2007).
Once families decide to adopt a child, they may
pursue several routes, such as international adoption
(also known as intercountry), public domestic adop-
tion, or private domestic adoption. In the United
States, domestic adoption can be a difficult, lengthy,
bureaucratic, and costly process that takes anywhere
from 12 months to 5 or 6 years (Fontenot, 2007;
London et al., 2007; Pillitteri, 2003). The laws fa-
voring birth mothers also complicate domestic
adoption. This long waiting period, and fear of the
court system, resulted in many families turning to
international/intercountry adoptions, which used to
provide a child in a much shorter amount of time.
In the current climate, however, international adop-
tions have become much more difficult; in some sit-
uations, such adoptions may no longer be an option
for parents. One drawback to an international adop-
tion is that little to no information about the child’s
birth parents’ background, prenatal health care, or
medical history may be available to the adopting
family (Gunnar & Pollak, 2007; Smit, 2010). The
lack of birth history places families at risk for adopt-
ing a child who may have experienced a significant
number of threats to physical health as well as nor-
mal brain and behavioral development, which can
contribute to future struggles as families cope with
the consequences of these problems (Gunnar &
Pollak, 2007; Smit, 2010). Box 12-6 lists other issues
and challenges related to international and transra-
cial adoption.
In Canada, approximately 20% of families are af-
fected by adoption, either through the public child
welfare (foster care) system or private adoption
agencies. A prerequisite for all Canadian adoption
is successful completion of the Parent Resource for
Information Development and Education (PRIDE)
course. In addition, private Canadian adoptions
agencies are required to provide birth parents with
counseling before the birth, to offer emotional sup-
port for adoptive parents, and to organize the court
and legal services involved.
Private adoption is another alternative for fami-
lies considering adoption. Private adoptions can
range from being strictly anonymous to very open,
where the adopting couple and birth mother get to
know each other extremely well. Often, the Internet
is a place where women wanting to place babies for
adoption and families seeking to adopt connect.
Canadian families wishing to adopt should be aware
that some provinces do not allow for direct adver-
tising on the Internet or in newspaper classifieds
(Canada Adopts, 2001). Regardless of how North
American families connect or interact with the birth
368 Nursing Care of Families in Clinical Areas
BOX 12-6
International and Transracial Adoption:
Issues and Challenges
Issues and Challenges to Families Before
International and Transracial Adoption
■ Ability to travel on short notice to pick up a child.
■ Changing political conditions may stop the adoption
process at any time.
■ Ways family will maintain the adopted child’s natural
heritage.
■ Ways family will deal with racial and other types of
prejudice.
■ The many rules and conditions sometimes prevent
families from adopting a child from a particular country.
Issues and Challenges to Families After
International Adoption
■ Limited postadoption resources such as pediatricians
trained in international adoption or international adop-
tion clinics for families seeking help for a child’s devel-
opmental and behavioral problems.
■ Child’s emotional and developmental issues can be
exhausting and financially tax the family.
■ Limited or no information about child’s maternal or
paternal medical history can be a source of uncertainty
and adoptive parental stress.
Issues and Challenges to Families After
Transracial Adoption
■ Need to redefine the family as multiracial and multieth-
nic when white families adopt nonwhite children.
■ Extra attention and comments about the child’s looks
from strangers in public places.
■ Neighbors, family members, and others may express
prejudice toward the child.
Sources: Adapted from Gunnar, M., & Pollak, S. D. (2007). Sup-
porting parents so that they can support their internationally
adopted children: The larger challenge lurking behind the
fatality statistics. Child Maltreatment, 12(4), 381–382;
Pillitteri, A. (2003). Maternal and child health nursing
(4th ed.). Philadelphia: Lippincott Williams & Wilkins; Rykkje, L.
(2007). Intercountry adoption and nursing care. Scandinavian
Journal of Caring Sciences, 21(4), 507–514; and Smit, E.
(2010). International adoption families: A unique health
care journey. Pediatric Nursing, 36(5), 253–258.
3921_Ch12_351-386 05/06/14 11:13 AM Page 368
mother, it is paramount that families pursuing pri-
vate adoption retain professional legal advice and
counsel to ensure that everyone involved, including
the birth father, understands the legal ramifications
and to work out all aspects related to the adoption
before the baby’s birth. In Canada, adoption falls
under provincial jurisdiction and, therefore, laws are
highly variable between provinces. For example,
some provinces allow families themselves to find a
child to adopt rather than having an agency choose
one for them. Nurses should encourage Canadian
families working with private agencies to under-
stand any adoption restrictions or limitations set by
the province in which they reside (Canada Adopts,
2001).
Nurses should be aware that when a private
adoption has been negotiated, one of the important
points is whether the adopting family will be pres-
ent at the child’s birth. Nurses must also be pre-
pared and ready to intervene should a birth mother
reverse her decision to give the baby up for adop-
tion, or a birth father who has not relinquished his
legal right to the baby asserts his rights (McKinney
et al., 2013; Pillitteri, 2003). See Box 12-7 for ap-
propriate nursing interventions when caring for
adoptive families.
Perinatal Loss
Perinatal loss is not uncommon and it is a trau-
matic event for families (Armstrong, Hutti, &
Myers, 2009; Callister, 2006). Losing a child dur-
ing pregnancy, after birth, or in the early postpar-
tum period is one of the hardest things a family can
experience. The loss may be anticipated and vol-
untary, such as with abortion or relinquishing
parental rights for adoption, or unanticipated, such
as death or loss of custody to the state. An adoptive
family may lose their intended child if a birth
mother changes her mind about giving up a baby
for adoption. Box 12-8 lists other types of perinatal
loss that families may experience.
Loss of a child is a unique and profound expe-
rience for parents. When parents lose a child, they
lose a part of their hoped-for identity, including
all hopes and dreams held for the child they antic-
ipated and loved; they also often experience a lack
of social recognition regarding the significance of
their loss (Armstrong et al., 2009; Callister, 2006;
O’Leary & Thorwick, 2006). Societal invisibility
of infant loss contributes to parental frustration,
especially when they are denied time to mourn
or are asked why they are not yet over their loss
(Callister, 2006; Chichester, 2005). One mother
put it this way when describing her loss experience
during the second trimester of pregnancy: “When
I lost my baby there was no memorial service, no
outpouring of sympathy, no evidence that I gave
birth and lost a baby” (Callister, 2006, p. 228).
Therefore, nurses caring for childbearing families
must engage in ongoing assessment and interven-
tions related to potential, previous, or current loss.
Grief and a process of bereavement should also be
anticipated secondary to perinatal loss, an adverse
perinatal outcome, diagnosis of congenital or ge-
netic disorders, palliative care, or the birth of a
special needs child.
Nurses providing care to childbearing families
should anticipate that each family member will
Family Nursing With Childbearing Families 369
Sources: Adapted from Canada Adopts! (2001). Adopting in
Canada. Retrieved from http://www.canadaadopts.com/
canada/domestic_private.shtml; Fontenot, H. (2007). Transi-
tion and adaptation to adoptive motherhood. Journal of Ob-
stetrics, Gynecologic and Neonatal Nursing, 36(2), 175–182;
Pillitteri, A. (2003). Maternal and child health nursing
(4th ed.). Philadelphia: Lippincott Williams & Wilkins; and
Smit, E. (2010). International adoption families: A unique
health care journey. Pediatric Nursing, 36(5), 253–258.
BOX 12-7
Nurse Interventions for Adoptive Families
■ Encourage families to seek help from adoption experts
and agencies.
■ Encourage families to understand and follow any legal
and provincial limitations or restrictions related to
adoption.
■ Refer families to adoption specialists, such as social
workers, counselors, and lawyers.
■ Recommend families speak with and secure pediatric
providers during the preadoptive process.
■ Recommend adoptive parents attend parenting
classes and include them in prenatal and infant
care classes.
■ Incorporate adoptive-sensitive material into classes and
other educational resources.
■ Keep lines of communication open between nurses
and adoptive families as a way to alleviate fears about
being judged or undermined.
■ Address other siblings’ response to the adopted child
because a biological child’s feelings of inferiority or su-
periority to an adopted child can interfere with relation-
ships within the family.
■ Address family concerns about attachment issues.
3921_Ch12_351-386 05/06/14 11:13 AM Page 369
experience loss differently. For example, mothers
are more apt to grieve visibly by emotional ex-
pression, sharing of feelings and participation in
grief support groups. Fathers, in contrast, tend
to feel a sense of loneliness and isolation and
have feelings of helplessness. Fathers, who often
see their role as primarily supportive of their
partner, may feel the need to “act as men” by
being strong and may hold back their own feel-
ings of grief and pain (Armstrong et al., 2009;
Callister, 2006; McKinney et al., 2013; O’Leary
& Thorwick, 2006; Robson, 2002). Siblings
may describe their grief experience as “hurting
inside” as a way to express feelings of sadness,
frustration, loneliness, fear, and anger (Davies,
2006). Grandparents experience a triple measure
of grief and sorrow when a grandchild dies: their
own personal grief as a human being suffering
the death of a loved one; the pain over the loss
of a grandchild, which carries with it the loss of
their dreams and expectations for their relation-
ship with that child; and seeing their own chil-
dren suffer (Lemon, 2002).
Considering the effect of perinatal loss on all
family members, nurses must work to support
and strengthen the familial bond in the face of
such loss (Callister, 2006). Nurses can support
families’ experience of perinatal loss by being
present and listening attentively, expressing emo-
tions, gathering memorabilia, and helping the
family make meaning of the experience. Referral
to support groups or provision of a list of avail-
able resources may be helpful depending on the
needs of the grieving couple or family (Callister,
2006; McKinney et al., 2013). Compassionate
Friends is one of many groups to which nurses
might refer grieving parents, siblings, and grand-
parents for support.
Culture influences how families respond to
perinatal loss. Therefore, it is essential for nurses
to understand several different culturally diverse
practices and rituals associated with loss, as well as
provide culturally competent care. Nurses demon-
strate cultural sensitivity when they validate what
families perceive to be the “right way” to grieve
(Callister, 2006; Chichester, 2005). Box 12-9 lists
cultural perinatal loss practices and rituals of select
cultural groups.
Pregnancy Following Perinatal Loss
Psychological distress is higher in parents who
have experienced a prior perinatal loss, with
maternal anxiety about a child’s well-being ex-
tending a year or more after birth of another
child (Armstrong et al., 2009). Women may not
perceive pregnancy as normal after experienc-
ing perinatal loss but rather may be plagued
with a sense of anxiety, insecurity, ambivalence,
doubt, and concern that another loss may occur
(Callister, 2006; Davidson et al., 2008). They
also experience higher levels of anxiety than fa-
thers (Armstrong et al., 2009). Fathers may shut
down their feelings when pregnancy occurs after
loss because of unresolved feelings related to
prior pregnancy loss. They may even be too
frightened to share or may not be conscious of
their feelings. Nurses caring for childbearing
families during pregnancy after perinatal loss are
in a prime position to help mothers and fathers
open doors of communication that may have
been closed because of fear. One strategy nurses
could use to encourage communication is to ask
fathers “How are you doing?” in front of the
mothers, which provides an opportunity to share
what they are feeling (Davidson et al., 2008;
O’Leary & Thorwick, 2006).
370 Nursing Care of Families in Clinical Areas
BOX 12-8
Types of Perinatal Loss Families May
Experience
■ Miscarriage
■ Elective abortion
■ Ectopic pregnancy
■ Selective reduction after in vitro implantation of multiple
fertilized eggs
■ Stillbirth
■ Death of a child after a live birth
■ Recurrent pregnancy loss
■ Loss of a “perfect” child because of anomalies or
malformations
■ Death of a twin during pregnancy, labor, birth, or after
birth
■ Termination of pregnancy for identified fetal anomalies,
which is increasing because of technological advances
in prenatal diagnosis of such anomalies
Sources: Adapted from Callister, L. C. (2006). Perinatal loss: A
family perspective. Journal of Perinatal Neonatal Nursing,
20(3), 227–234; and Robson, F. (2002). Yes! A chance to
tell my side of the story: A case study of a male partner of a
woman undergoing termination of pregnancy for foetal abnor-
mality. Journal of Health Psychology, 7(2), 183–193.
3921_Ch12_351-386 05/06/14 11:13 AM Page 370
THREATS TO HEALTH DURING
CHILDBEARING
For the majority of families, childbearing is a
physically healthy experience. For some families,
health during childbearing is threatened, and the
childbearing experience becomes an illness expe-
rience. In such cases, concern for the physical
health of the mother and the fetus tends to out-
weigh other aspects of pregnancy; rather than
eagerly anticipating the birth and baby, family
members experience fear and apprehension.
Moreover, the family’s functioning and develop-
mental tasks are disrupted as the family focuses
its attention on the health of the mother and sur-
vival of the fetus or baby. Childbearing nurses
must be aware that families with threats to health
have additional needs for maintaining and pre-
serving family health.
Acute and Chronic Illness During
Childbearing
This chapter defines “acute” as health threats that
come on suddenly and may have life-threatening
implications. Examples of acute health threats
childbearing families may encounter are fetal dis-
tress during labor and pulmonary embolism for
postpartum women. In contrast, “chronic” com-
prises conditions occurring during pregnancy that
persist, linger, need control, or have no cure and
that require careful monitoring and treatment to
avoid becoming an acute threat to maternal or in-
fant health. Pregnancy-induced hypertension, ges-
tational and preexisting diabetes, and postpartum
depression are some examples of chronic health
threats. Some threats to health during childbearing
vacillate between acute and chronic. For example,
preterm labor can be an acute health threat that re-
sults in a preterm birth. If preterm labor contrac-
tions are suppressed, it becomes a “chronic” health
threat requiring adherence to prescribed regimens
to keep contractions from recurring.
Effect of Threats to Health
on Childbearing Families
Chronic threats to childbearing health are disruptive
to childbearing families. Knowledge of the family as
a dynamic system explains why the effects of these
chronic conditions extend to the entire family and
result in the upset of family functioning, develop-
ment, and structure that normally keep the family
system stable (Denham & Looman, 2010; Maloni,
Brezinski-Tomasi, & Johnson, 2001). When child-
bearing health is threatened, all family members ex-
perience stress as families strive to regain balance.
For example, three sources of stress that alter family
processes when the mother or infant experiences a
chronic health threat are (1) assuming household
tasks, (2) managing changes in income and resources,
and (3) facing uncertainty and separation.
Assuming Household Tasks
When women experience chronic threats to child-
bearing health, other members of the family must
assume responsibility for household tasks and func-
tioning, regardless of whether the condition is
Family Nursing With Childbearing Families 371
Sources: Adapted from Callister, L. C. (2006). Perinatal loss: A
family perspective. Journal of Perinatal Neonatal Nursing,
20(3), 227–234; Chichester, M. (2005). Multicultural issues
in perinatal loss. Lifelines, 9(4), 314–320; Palacios, J., Butterfly,
R., & Strickland, C. J. (2005). American Indians/Alaskan
Natives. In J. G. Lipson & S. L. Dibble (Eds.), Cultural and
clinical care (pp. 27–41). San Francisco, CA: The Regents
University of California; and Sutherland, A. H. (2005). Roma
(Gypsies). In J. G. Lipson & S. L. Dibble (Eds.), Cultural and
clinical care (pp. 404–414). San Francisco, CA: The Regents
University of California.
BOX 12-9
Perinatal Loss Cultural Practices and Rituals
■ Hmong families may request the placenta following
birth due to their belief that burying it prevents prob-
lems of the soul.
■ Jewish families may request to remain with the body
at all times out of respect. Newborns are named and
circumcised at burial so they can be included in family
records.
■ Muslim babies born after more than 4 months’
gestation are to be named, bathed, wrapped in a
seamless white sheet, and buried within 24 hours.
Bodies are buried intact, so taking locks of hair is
not permitted.
■ Puerto Rican families may call on faith healers and
spiritualists to assist the baby on his or her journey into
the next life.
■ Roma (gypsy) families want to avoid any association
with death and bad luck/impurity (mahrime), so they
may leave the hospital suddenly and shift responsibility
for burial to the hospital.
■ American Indians/Alaskan Natives may request to
remain with the baby until death to pray.
3921_Ch12_351-386 05/06/14 11:13 AM Page 371
managed at the hospital or at home. Assumption
of household tasks by others creates family stress,
especially for partners who must take on the role
of caring for the family, as well as caring for the
expectant mother and/or infant (Bomar, 2004;
Maloni, 2010). Expectant fathers especially may
find that all their time and energy are consumed by
employment and household management, tasks
that previously were shared or done solely by their
partners. Children’s lives change when mothers
have to limit activities. Toddlers do not understand
why their mothers cannot pick them up or run after
them. The resulting frustration for children can
manifest itself in behavioral changes, such as
tantrums and regression in developmental tasks
(e.g., toilet training).
Managing Changes in Income
and Resources
An at-risk pregnancy is stressful in terms of the
family’s finances and other resources. For example,
if a mother is placed on bedrest because of risk for
preterm labor, she may miss time away from paid
employment. Or a mother may not have the ability
to seek employment, which also results in loss of
income. At the same time, medical expenses may
increase because of the need for increased care, in-
cluding possible neonatal intensive care and main-
taining multiple health care provider visits or
hospital stays. Personal expenses associated with
the cost of specialized diets, medications, and hir-
ing personnel to assist with household tasks may
also increase; such costs are not usually covered by
health care systems in Canada or the United
States. For families already in debt or struggling
with unemployment or other financial challenges,
these threats to health serve to increase the burden
of debt.
Although resources, such as energy and social
networks, cannot be measured as easily as money,
family nurses are in a position to help families con-
sider and manage changes in their nonmonetary re-
sources. Some of the nonmonetary changes that
family nurses should anticipate families will en-
counter include the following: that others outside
of the nuclear family may need to assume various
household tasks such as meal preparation, laundry,
and cleaning; that all families may not have social
networks or extended families in the immediate
vicinity; that changes in employment may cause
separation from persons and activities that were
stimulating; and that isolation, regardless of the
cause, can increase a family’s burden.
Facing Uncertainty and Separation or Loss
The unpredictable nature of high-risk childbearing
makes planning for the future difficult for child-
bearing families because it leaves them facing un-
certainty and possible separation. For example,
expectant parents, especially employed women,
face uncertainty with pending preterm birth be-
cause they may not be able to determine accurately
when to begin and end parental leave because of
the need to cope with sudden hospitalization. Sep-
aration can occur when mothers are suddenly hos-
pitalized or when families living in remote rural
areas are transferred to a distant perinatal center
for days or weeks. When families are separated, it
becomes difficult for them to maintain and develop
family relationships. Separation from the family
and concerns about family status are two of the
greatest stressors experienced by women hospital-
ized for chronic threats to childbearing health
(Maloni, Margevicius, & Damato, 2006). In addi-
tion, small children experience extreme anxiety
over the sudden departure of their mother, espe-
cially if they are unprepared or unable to compre-
hend what is happening to their mother and the
new baby.
Even if the logistical problems related to sepa-
ration are solved and a family can be together, cop-
ing with basic tasks of living is challenging in new
settings. For instance, a family may not know
where to stay, how to find reasonably priced meals,
how to obtain transportation, or where to park a
car. Box 12-10 presents nursing interventions re-
lated to childbearing families who are experiencing
chronic threats to health.
FAMILY NURSING OF POSTPARTUM
FAMILIES
All family members experience household up-
heaval during the first few days and weeks a new-
born is in the home. Throughout the childbearing
cycle, nurses assist families to understand, prepare,
and respond to the effect of a new baby on the
family. Assisting parents to be realistic in their ex-
pectations about themselves, each other, and their
children helps them to plan ahead by identifying
appropriate support and resources. This section
372 Nursing Care of Families in Clinical Areas
3921_Ch12_351-386 05/06/14 11:13 AM Page 372
discusses appropriate nursing assessments and in-
terventions family nurses should incorporate into
their practice when caring for families during the
postpartum period.
Feeding Management
Success in feeding their babies induces feelings of
competency in mothers. A family’s comfort with its
infant feeding method is as crucial for physical,
emotional, and social well-being of the infant as is
the food itself. Regardless of the parents’ choice of
feeding method, nurses’ instructions need to em-
phasize the development of relationships between
infant and parent through feeding. Being held dur-
ing feeding enhances social development whether
a baby is being breastfed or bottle fed. Parents
should take the time during feedings to enjoy in-
teracting with their babies. When the infant is
adopted, social interaction with feeding is a special
opportunity for developing attachment.
Even though the act of breastfeeding is a
strictly female function, fathers need not be ex-
cluded from the feeding experience. Nurses can
promote paternal-infant attachment by encourag-
ing fathers to be involved with feeding. For exam-
ple, the father can burp the baby during or after
feedings, as well as hold and comfort the infant
once feeding has been completed. Another way to
involve fathers is to have them give the breastfed
baby an occasional bottle of expressed breast milk
once breastfeeding is well established (Davidson
Family Nursing With Childbearing Families 373
BOX 12-10
Family Nursing Interventions for Childbearing Families Experiencing Chronic Threats to Health
Assuming Household Tasks
■ Help families find ways to streamline and prioritize
household tasks to reduce stress and increase adher-
ence to medical regimens.
■ Assist adults to list household management tasks and
determine who does what when so that the family can
be more efficient and effective in managing these tasks.
■ Educate families about the impact of parents’ health dif-
ficulties on children.
■ Provide practical, age-appropriate suggestions for man-
aging children, such as hiring a teenager after school for
active play with young children.
■ Encourage parents to provide ways for young children
to have some quiet one-on-one time with their mothers
as a way to reduce stress for both mothers and children.
Managing Changes in Income and Resources
■ Refer families to an appropriate counselor who can ex-
plore with family members ways to manage financial
problems.
■ Assist families to identify others outside of the nuclear
family who can assume various household tasks, such
as meal preparation, laundry, and cleaning.
■ Help families identify and use resources, such as home-
health agencies and parents’ groups in the community,
to assist with household management.
■ Encourage families with necessary resources to use a
computer to connect with each other, friends, cowork-
ers, and other at-risk families to prevent or decrease
feelings of isolation.
■ Direct families to appropriate Internet sites, such as the
ones listed in the Selected Resources section at the end
of this chapter.
Facing Uncertainty and Separation and Loss
■ Acknowledge the difficulties of uncertainties associated
with difficult perinatal situations.
■ Be honest and informative about the condition and
prognosis of both the mother and fetus.
■ Use terms understood by all family members to provide
accurate and thorough explanations tailored to families’
anxiety levels.
■ Assist families to cope with basic tasks of living in high-
tech settings such as the neonatal intensive care unit.
■ Investigate and reduce the barriers families may en-
counter at a distant perinatal center, such as lack of
transportation, employment, and the threatening envi-
ronment of a strange setting.
■ Provide families with information on where to stay, how
to find reasonably priced meals, how to obtain trans-
portation, and where to park a car.
■ Encourage use of electronic communication, such as
e-mail, to facilitate contact between family members
and health care professionals.
■ Encourage calling families about their members’
progress and sending photographs as a way to help
families cope with uncertainty and enhance relation-
ships of physically separated family members.
■ Encourage family members to participate in care of their
infants to promote development of parenting skills.
Source: Adapted from Martell, L. K. (2005). Family nursing with childbearing families. In S. M. H. Hanson, V. Gedaly-
Duff, & J. R. Kaakinen (Eds.), Family health care nursing: Theory, practice and research (3rd ed., pp. 291–323.)
Philadelphia: F. A. Davis.
3921_Ch12_351-386 05/06/14 11:13 AM Page 373
et al., 2008; McKinney et al., 2013). Early involve-
ment of fathers in feeding is beneficial later when
infants are being weaned from the breast or moth-
ers are preparing to return to employment.
Many people assume that breastfeeding is “nat-
ural” and so should not present any difficulties.
Nevertheless, many women initially may experi-
ence breastfeeding difficulties, especially if the baby
has difficulty latching or milk takes longer than ex-
pected to come in. It is important that nurses assess
a mother’s breastfeeding technique early and pro-
vide hands-on teaching so mothers can learn how
to breastfeed successfully. Referral to a lactation
consultant may be necessary before the new family
leaves the hospital. Nurses should also ensure that
the family is given resource information about
breastfeeding, including how to obtain assistance
at postdischarge clinics when breastfeeding chal-
lenges arise.
Attachment
Positive parent-infant attachment must take place
to foster optimal growth and development of in-
fants, as well as to encourage the parent-infant love
relationship. The attachment process requires early
involvement and physical contact between parents
and their infant for a strong link to develop (Schenk
et al., 2005). Extreme stress, health risk factors, and
illness can interfere with the physical contact and
early parent-infant involvement needed for the de-
velopment of attachment. Stressful conditions that
pull parents’ energies and attention away from their
newborns can be detrimental to attachment. Adop-
tion can be another factor influencing attachment,
especially if the child had multiple caretakers or
frequently changed living location. Children who
were adopted from more stable environments may
also have attachment difficulties if they struggle to
transfer their attachment from a previous caretaker
to their adoptive parents (Smit, 2010).
Nurses should be alert for families who are likely
to have difficulty with attachment, especially if
family history indicates a parent has suffered abuse,
neglect, or abandonment during childhood. In ad-
dition, nurses may identify families at risk for poor
attachment through listening to what parents say
about their babies and by observing parent behav-
iors. Families at risk for poor attachment may have
misconceptions about infant behavior, such as be-
lieving that infants cry just to annoy their parents.
Hence, family nurses must address verbal expres-
sions of dissatisfaction with the infant, comparison
of the infant with disliked family members, failure
to respond to the infant’s crying, lack of spontane-
ity in touching the infant, and stiffness or discom-
fort in holding the infant after the first week.
Although isolated incidences of these behaviors are
probably not detrimental to attachment, persistent
trends and patterns could be an indicator of future
relationship difficulties.
Another signal of attachment difficulty is incon-
sistent maternal behaviors, such as a mother who
exhibits intense concern at times interspersed with
apathy at other times without any predictable cause
or pattern. Therefore, an important step when as-
sessing attachment behaviors is to evaluate whether
the parent-infant relationship is progressing posi-
tively and if the enjoyment and love of the child is
growing over time. If the parents’ enjoyment of the
baby as a unique individual and their commitment
to the baby are not progressing, the nurse needs to
help the family understand what attachment is and
also needs to identify factors that might be inter-
fering with attachment to the infant. For example,
mothers struggling with PPD need treatment for
their depression before they can address attach-
ment to the infant. Childbearing family nurses may
need to refer families who do not demonstrate nur-
turing behaviors to other professionals such as so-
cial workers, psychotherapists, and developmental
specialists who can provide more intensive inter-
ventions that will help parents care for and nurture
their children.
Siblings
No matter what age siblings are, the addition of a
new baby affects the position, role, and power of
older children, thereby creating stress for both par-
ents and children. Teaching parents to emphasize
the positive aspects of adding a family member
helps them focus on sibling “relationships” rather
than “rivalry.” Parents need help to address all of
the children’s needs, not just those of the new baby.
Parents may be concerned about whether they have
“enough” energy, time, and love for additional chil-
dren. Practical ideas for time and task management
can alleviate some of their concerns, as can helping
parents delegate nonparenting tasks, such as house-
cleaning and meal preparation, to friends and rela-
tives when possible.
374 Nursing Care of Families in Clinical Areas
3921_Ch12_351-386 05/06/14 11:13 AM Page 374
Postpartum Depression
The period after childbirth can be a stressful time
for women because of their need to face the new
tasks of the maternal role. Changes in relationships,
economic demands, and social support also take
place during this time and can result in postpartum
stress (Hung, 2005). PPD, one type of postpartum
mood disorder, has been described as “a dangerous
thief that robs women of precious time together
with their infants that they had been dreaming of
throughout pregnancy” (Beck, 2001, p. 275). Al-
though “baby blues” are a predictable and tempo-
rary mood shift that occurs during the first 2 weeks
after childbirth, symptoms of stress that take hold
and persist during the first year are of concern to
family nurses because they can adversely affect ma-
ternal health and the ability of mothers to function
in their new role (Blass, 2005; Hung, 2005). The
effects of maternal depression are not limited to the
mother herself but spread to family, friends, and
coworkers alike (Grantmakers in Health, 2004).
Left unidentified and untreated, PPD leads to se-
rious consequences for families, such as maternal
suicide, poor attachment to the infant, altered fam-
ily dynamics, and lowered cognitive development
in children. Considering these consequences, it
becomes imperative that family nurses educate
woman and their families about potential causes
and symptoms of PPD, as well as immediately
identify and appropriately refer women experienc-
ing this mood disorder so that early treatment can
begin (Doucet, Dennis, Letourneau, & Blackmore,
2009; Driscoll, 2006; Ross, Dennis, Blackmore, &
Stewart, 2005). Box 12-11 lists signs of PPD.
Usually women do not volunteer information
about their depression out of shame, fear, lack of
understanding about the seriousness of their illness
and available access to appropriate health care serv-
ices (Doucet et al., 2009; Driscoll, 2006). There-
fore, it is left to the nurse to identify its existence
by understanding and recognizing the signs and
symptoms, even if they are subtle. If the new
mother is making negative comments about her-
self, the baby, or her partner; if she is ignoring her
other children’s needs; if her physical appearance
shows signs of neglect; or if family members report
a change in the woman’s mood or behavior, it is
time to screen for PPD. Childbearing family nurses
might consider incorporating the two-question
screening measure that Jesse and Graham (2005)
developed as a rapid way to begin the identification
of women at risk for PPD. Use of this scale simply
involves nurses asking women two questions: “Are
you sad or depressed?” and “Have you experienced
a loss in pleasurable activities?” Women who an-
swer yes to both of these questions should be re-
ferred to a mental health provider (Driscoll, 2006).
Family nurses caring for childbearing families
might also consider using one of many readily
available and easy-to-use depression scales, such
the Edinburgh Postnatal Depression Scale or the
Postpartum Depression Predictors Inventory—
Revised, as a routine screening tool for PPD
(Davidson et al., 2008; McKinney et al., 2013). In
particular, the Edinburgh Postnatal Depression Scale
has been found to be valid for several cultures, has
been translated into several different languages, and
has been used with men (Driscoll, 2006; Eberhard-
Gran, Eskild, Tambs, Opjordsmoen, & Samuelsen,
2001; Goodman, 2004). Regardless of which screen-
ing tool is used to identify women at risk for PPD,
childbearing family nurses have a professional re-
sponsibility to assess for the disorder, recommend
women be referred for treatment, and provide self-
care strategies and support to the woman and her
family (Driscoll, 2006; Doucet et al., 2009).
Although much attention has been given to ma-
ternal PPD, shifting gender roles and paternal in-
volvement in child care require adjustments for men
Family Nursing With Childbearing Families 375
Sources: Adapted from Davidson, M. R., London, M. L., & Ladewig,
P. A. (2008). Olds’ maternal-newborn nursing and women’s
health across the lifespan (8th ed.). Upper Saddle River, NJ:
Pearson Prentice Hall; and Driscoll, J. W. (2006). Postpartum
depression: How nurses can identify and care for women grap-
pling with this disorder. Lifelines, 10(5), 399–409.
BOX 12-11
Signs of Postpartum Depression
■ Sadness
■ Frequent crying
■ Insomnia or excessive sleeping
■ Lack of interest or pleasure in usual activities, including
sexual relations
■ Difficulty thinking, concentrating, or making decisions
■ Lack of concern about personal appearance
■ Feelings of worthlessness
■ Fatigue or loss of energy
■ Depressed mood
■ Thoughts of death: suicidal ideation without a plan;
suicide plan or attempt
3921_Ch12_351-386 05/06/14 11:13 AM Page 375
as well, which puts them at risk for experiencing de-
pression after the birth of a child, especially if the
mother is depressed. This consequence makes sense
to nurses who understand Family Systems Theory
because anything that affects one family member di-
rectly or indirectly affects other family members.
Viewed from this theoretical perspective, it is easy
to see how maternal or paternal depression affects
all family members and relationships within the fam-
ily and results in serious implications for family
health and well-being. Therefore, family nurses
must recognize PPD in fathers just as in mothers,
because when both parents are depressed, the risk to
infants and children increases (Goodman, 2004). As
with mothers, recommendation of a referral for fa-
thers to mental health care providers should be made
in an effort to initiate early treatment and reduce
negative effects on the family system (Goodman,
2004). Box 12-12 lists additional nursing interven-
tions for PPD.
POLICY IMPLICATIONS FOR FAMILY
NURSING
The concerns of childbearing family nursing go
beyond care of the individual family. Nurses are
participants in understanding, developing, and im-
plementing policy as it relates to childbearing fam-
ilies. Much of Chapter 5 addresses important issues
for childbearing families. The legal definitions of
family, official recognition of the diversity of fam-
ilies, access to health care, alternatives to traditional
childbearing such as cross-cultural adoption, and
growing needs of poverty-stricken and other dis-
enfranchised families are just a few of the policy
areas vital to childbearing family nursing.
Nurses need to be aware of the effect of legisla-
tion on childbearing families. One example is fam-
ily leave for childbirth, which can profoundly affect
the health and development of childbearing fami-
lies. In the United States, the Family and Medical
Leave Act (FMLA), a federal law enacted in 1993,
entitles family members to take unpaid time away
from employment without penalty to care for a
family member, such as a newborn, with health
care needs. Unfortunately, many families cannot
take advantage of the benefits of this act because it
applies only to certain size businesses and employ-
ers are not obligated to pay on-leave employees.
Further, the FMLA only allows for 3 months of
unpaid parental leave. Although the intent of the
FMLA is commendable, it must be noted that eli-
gibility criteria are quite restrictive and thus can
rule out many workers (Galtry & Callister, 2005).
Unlike the citizens of many developed nations, par-
ents in the United States are not entitled to gov-
ernment benefits for childbearing except for tax
deductions and other incentives. Many European
countries, by contrast, offer paid paternity leave.
In Canada, some social policies have been put
into place in an effort to assist both parents to
balance work-life issues and manage the care of
newborns. All families in every Canadian province
and territory are entitled to “maternity leave” or
“parental leave” following childbirth and adoption.
A federally funded Employment Insurance (EI) pro-
gram, except in Quebec, provides 15 weeks of paid
maternity/parental leave at 55% of the mother’s usual
376 Nursing Care of Families in Clinical Areas
BOX 12-12
Nursing Interventions for Postpartum
Depression
■ Help women differentiate between myths of the
mother role—which imply that at 6 weeks after birth,
women are ready to resume all their previous activi-
ties—and the reality of motherhood, where prepreg-
nancy clothes do not fit, infants periodically become
demanding malcontents, and houses are messy be-
cause family members are too exhausted to clean.
■ Encourage women with postpartum depression to
share feelings as they grieve the loss of who they were
and begin to build on who they are becoming. Solicit
input from family members about changes in mood or
behavior.
■ Encourage women to seek help with symptoms of anx-
iety, anger, obsessive thinking, fear, guilt, and/or suici-
dal thoughts.
■ Assist women to re-create, restructure, and integrate
changes that new motherhood brings into their daily
lives.
■ Develop standard protocols for screening men whose
partners are depressed after childbirth.
Sources: Adapted from Driscoll, J. W. (2006). Postpartum de-
pression: How nurses can identify and care for women grap-
pling with this disorder. Lifelines, 10(5), 399–409; Goodman,
J. H. (2004). Paternal postpartum depression, its relationship
to maternal postpartum depression, and implications for
family health. Journal of Advanced Nursing, 45(10), 26–35;
and Martell, L. K. (2005). Family nursing with childbearing
families. In S. M. H. Hanson, V. Gedaly-Duff, & J. R. Kaakinen
(Eds.), Family health care nursing: Theory, practice and care
(3rd ed., pp. 267–289). Philadelphia: F. A. Davis.
3921_Ch12_351-386 05/06/14 11:13 AM Page 376
salary (to a maximum amount, currently $485 per
week) providing she worked 600 hours in the
52 weeks prior to the onset of maternity leave; med-
ical documentation of her expected or actual date of
delivery is required. In the event of a premature
birth, this benefit may be extended anywhere from
17 to 52 weeks for every week that a newborn re-
mains in the hospital because of prematurity. In
Quebec, similar maternity leave coverage is available
for 18 weeks under the provisions of the Quebec
Parental Insurance Plan (QPIP). Some employers,
particularly in the province of Quebec, opt to “top
up” this payment for part of the maternity leave pe-
riod; that is, they pay the difference between the ma-
ternity payment and the employee’s usual salary
(Marshall, 2010).
All types of policies affect family nursing every
day. Health policy has far-reaching ethical and
practical implications for childbearing family nurs-
ing. For instance, genetic screening during preg-
nancy and hearing screens for the newborn have
become compulsory for health care providers in
some Canadian provinces. Moreover, cystic fibrosis
screening in pregnancy and newborn screening for
metabolic and genetic diseases have become manda-
tory for maternity providers in many American
states. The informed decision-making models that
are the impetus for these policies are not replicated
in European health care systems; by contrast, they
often are negatively viewed as eugenic solutions to
reduce the incidence of disability. European sys-
tems, unlike in North America, heavily fund serv-
ices for disabled children and their families.
Hospitals also have policies affecting families that
should be of concern to family nurses, especially
considering how varied the family of today is. For
example, increasing numbers of nontraditional fam-
ilies, such as lesbian couples, are having children
through donor insemination or adoption (Roberts,
2006). Yet policies that guide perinatal practices—
from the visual images hanging on the wall to if or
how well partners are welcomed in prenatal groups,
the delivery room, or other hospital environments—
may be a barrier to these particular families’ wel-
fare and relationships (Goldberg, 2005; Roberts,
2006). In these situations, family nurses have an
obligation to speak out on behalf of families.
Often, nurses think of policies as entities beyond
their control. In actuality, nurses have a voice and
power in forming and changing policies. Begin-
ning steps include close scrutiny of their practice
settings for issues related to the welfare of families
and their members.
FAMILY CASE STUDIES
This section illustrates the art and science of nurs-
ing with childbearing families. The Sanders family
demonstrates family nursing care when unexpected
health problems occur during pregnancy. The
Housah-Ibrahim family case study reveals how a
nurse provides culturally sensitive care to young
parents who are quite new in the country.
Family Nursing With Childbearing Families 377
Family Case Study: Sanders
Family—A Family Experiencing
a Preterm Birth
Tom and Mary Sanders have been married to each other
for 6 years. Tom, age 28, and Mary, age 28, have one
child named Jenny who was born at full term 2 years ago.
Mary did not experience any health problems with her
first pregnancy. At that time, the Sanders lived in a large
city in the western part of the United States, near their
parents, siblings, and childhood friends. Two years later,
the Sanders had moved to a small town 500 miles away
from their friends and families to find better professional
opportunities for Tom, a software engineer, and more af-
fordable housing. A month after the move, they discov-
ered that Mary was about 3 months pregnant. Although
Tom’s new job provided medical insurance for the family,
Mary was concerned about finding and obtaining obstetri-
cal care in their new community. Even though it would
strain family finances, Mary decided to postpone seeking
employment as a secretary until after the birth and to
concentrate instead on fixing up the older two-story
house they had bought.
Unexpectedly, Mary had health problems with this
pregnancy. At 27 weeks’ gestation, her obstetrician diag-
nosed gestational diabetes, which required Mary to mod-
ify her diet to keep her blood glucose under control. At
29 weeks, she began to have preterm labor. To stop the
contractions, her physician insisted that Mary stay on
bedrest around the clock except for a very brief daily
shower and use of the bathroom. Tom had to take over
meal preparation, house cleaning, and caring for Jenny.
He arranged the living room so Mary could lie on the
couch and Jenny could play near her mother while he
(continued)
3921_Ch12_351-386 05/06/14 11:13 AM Page 377
378 Nursing Care of Families in Clinical Areas
was at work. Because he had not yet accrued vacation or
sick time, Tom could not take time off from his job to
help Mary and take care of Jenny without sacrificing pay.
Mary found it difficult to follow her diet and stay on
bedrest. She was frustrated because she had to stop her
house renovation, and Tom’s cooking and housecleaning
were not up to her standards. She was tempted to run
the vacuum cleaner, wash dishes, and eat sweets while
Tom was at work. The medication to suppress contrac-
tions made her so anxious and tremulous that she could
not amuse herself with crafts, sewing, or puzzles. She
was lonely for her mother and the support of friends
who were 500 miles away; she longed for companion-
ship, but found herself complaining and nagging Tom
when he was home. Jenny frequently had tantrums be-
cause she could not play outside with her mother and
began to have lapses in toilet training.
At 32 weeks of pregnancy, Mary’s membranes rup-
tured; her physician sent her to a perinatal center 100
miles away from home because it had better facilities to
care for preterm babies. Jenny went with her parents to the
perinatal center to wait until one of her grandmothers
could come and take care of her. Jason was born 28 hours
after the Sanders arrived at the perinatal center hospital.
Figure 12-1 presents a Sanders family genogram.
Mary was discharged from the perinatal center within
24 hours after Jason’s birth. At home, she felt extremely
weak and was overwhelmed by household tasks and car-
ing for Jenny. She was disappointed that she was unable
to breastfeed the baby. Two weeks later, she was weep-
ing frequently, felt very sad, had no appetite, and had dif-
ficulty sleeping. Being with their new son was difficult
because each visit required a 200-mile round-trip, Tom
had a full-time job, and Mary cared for Jenny during the
day. Jason, the new baby, remained at the perinatal cen-
ter in the special care nursery until he was mature and
stable enough to go home 4 weeks later. At her 6-week
postpartum checkup, Mary told the office nurse that she
did not enjoy caring for her new baby and she had diffi-
culty with her sleep. Based on this information the office
nurse asked Mary to complete the Edinburgh Postnatal
Depression Scale. Figure 12-2 presents the Sanders fam-
ily ecomap and how the nurse mobilized resources to
help this family.
Jenny
2 yrHealthy
Premie
growing
Jason
6 wk
Software
engineer
M 2006
Difficult pregnancy
postpartum depression
Mary
28 yr
Tom
28 yr
FIGURE 12-1 Sanders family genogram.
3921_Ch12_351-386 05/06/14 11:13 AM Page 378
Family Nursing With Childbearing Families 379
FIGURE 12-2 Sanders family ecomap.
Postpartum
depression
support group Neighborhood
community
Jenny
2 yr
Jason
32 wks
(in NICU)
Tom
28 yr
Mary
28 yr
Visiting RN’s
Church
preschool/
day care
Babysitting
co-operative
Certified
nurse
midwife
Perinatal center -
Ronald McDonald
House
Tom’s job
software
engineer
Extended family
(grandmothers
staying x1 mo and
trading places)
Strong relationship
Weak relationship
Tense relationship
Direction of
energy flow
Case Study: Housah-Ibrahim
Family—A Somalian Family in
Canada Experiencing Childbirth
Fatima Housah, age 21, and Abdi Ibrahim, age 28, have
been married for 3 years and are excited that Fatima is
expecting their first baby. Abdi grew up in Somalia and
was trained as an engineer in South Africa. He currently
works as a taxicab driver in a large urban city in Canada
while attending night school to obtain credentials in engi-
neering. Abdi’s mother and father live and work 1 hour
away in an adjacent city. Following a wait of 3 years, Abdi
was relieved when Fatima’s application for permanent
residence was finally accepted so that she could remain
in Canada. She had arrived 1 year earlier as a refugee
claimant who had experienced much hardship and ethnic
persecution in Somalia and then in the refugee camp in
Uganda. Her experience of frequent moving between
refugee camps and fleeing rebel-led violence has left her
with post-traumatic stress disorder. She is receiving emo-
tional support from the women at the local mosque. Fa-
tima has two sisters, a brother, and an aunt who reside in
another Canadian province and she feels lonely for them
at times. Talking by computer on Skype only causes her to
miss them more. Fortunately, many of the women from
the local Muslim Community Centre have offered her
friendship. They are teaching her how to take the bus
and subway and how to find ethnic foods in the local
markets. She is grateful that they taught her how to use
the kitchen appliances safely. She had never used a stove
before coming Canada. Figure 12-3 presents a family
genogram for Fatima and Abdi’s family.
Fatima is concerned about her prenatal care. Even
though the Imam at the mosque says that a male physi-
cian could provide emergency care for her, she believes
that a female provider might be more understanding.
Finding a female maternity care provider has been a
challenge in this community despite being insured by
(continued)
3921_Ch12_351-386 05/06/14 11:14 AM Page 379
380 Nursing Care of Families in Clinical Areas
Nadif Newborn
1 mo
From Somalia
Taxi driver
Night school college
M 2010
From Somalia
Spent time in refugee
camp Uganda
PTSD
Speaks basic English
Fatima
21 yr
Abdi
28 yr
FIGURE 12-3 Housah-Ibrahim family genogram.
and female consulting obstetrician can obtain consent to
start medication to augment labor. Because of her past
experiences, Fatima is resistant to medication and dis-
trustful of medical authorities. In halting English, Fatima
asks why the midwife wants to interfere with the natural
processes of labor. Although she is not crying, her face
appears to be drawn and frightened under her hijab
(head scarf).
Twenty-four hours following vaginal delivery of a
healthy baby boy named Nadif, Fatima is discharged
home. Abdi is eager to participate in infant care although
this is not the traditional father’s role in Somali culture. He
has learned how to change Nadif’s diapers and to bathe
him. Abdi stays up late surfing the Internet to learn more
about fatherhood and about how to cook iron-rich foods
for Fatima because she is too exhausted most evenings to
cook. Abdi’s parents are able to visit on weekends to help
with the baby and thus provide much-needed support for
this family. In addition, this couple has several community
supports in place, as well as a follow-up appointment with
a pediatrician at the public health center for the baby.
Figure 12-4 presents Fatima and Abdi’s family and how
the nurse mobilized resources to help this family.
Canada’s universal health care plan. To date, Fatima
has had sporadic prenatal care at the walk-in center. By
32 weeks, however, she was able to find a female mid-
wife with whom she has had five prenatal visits so far.
At one of these visits Fatima reveals that she is worried
about how her first-degree circumcision as an infant
(which involved only a clitorectomy, thus leaving the labia
and urethra intact) will affect the birth.
At 41 weeks’ gestation, Fatima starts to feel lower ab-
dominal cramps that continue over 2 hours and proceed
to include lower back pain. The couple does not own an
automobile, so they rush to the closest hospital by ambu-
lance. Fatima notes that the nurse who greets them in the
Labour Floor Triage room is a female; she is very kind and
speaks slowly and gently. This approach is helpful be-
cause Fatima’s English is still fairly basic. She defers to
Abdi who answers all of the medical history questions.
Further assessment reveals that her cervix has not started
to change and that she is contracting regularly. Fatima is
admitted to the hospital after 22 hours of prodromal
labor and her female midwife consults the attending ob-
stetrician regarding the need for oxytocin augmentation. A
Somali interpreter is called to the bedside so the midwife
3921_Ch12_351-386 05/06/14 11:14 AM Page 380
SUMMARY
Childbearing family nursing focuses on family re-
lationships and the health of all members of the
childbearing family, even during times of extreme
threats to maternal health. Several different theo-
ries available to nurses encountering families dur-
ing childbearing can help guide their assessment of
the family, their plan of care, and interventions for
the family. Nurses are also in a position to have a
powerful influence on the development of family-
friendly policies at both the federal and practice
setting levels.
■ Several theories, including Family Systems
Theory and Family Developmental Theory,
are helpful to guide nurses’ understanding
of childbearing families and to structure
nursing care.
■ Stress-producing pregnancy-related events
disrupt family functioning regardless of
how the family is structured (traditional or
nontraditional).
■ While giving direct physical care, teaching
patients, or performing other traditional
modes of childbearing nursing, family nurses
focus on family relationships and health of all
members of the childbearing family.
■ Acute and chronic health conditions can de-
velop during pregnancy and, thus, disrupt
family functioning, development, and struc-
ture. When health threats arise, all family
Family Nursing With Childbearing Families 381
FIGURE 12-4 Housah-Ibrahim family ecomap.
Food bank
Women at
local mosque
Female
midwife
Pediatrician
Community
college
Abdi
parents
Nadif
Newborn
1 mo
Fatima
21 yr
Abdi
28 yr
Strong relationship
Weak relationship
Tense relationship
Direction of
energy flow
3921_Ch12_351-386 05/06/14 11:14 AM Page 381
members experience stress as they strive to
regain balance.
■ Childbearing family nurses can assist families
to understand, prepare for, and respond to
the effect each newborn has on the family.
■ Nurses must participate in policy develop-
ment and implementation as it relates to
childbearing families.
■ Nurses need to be aware of the effect of leg-
islation on childbearing families.
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384 Nursing Care of Families in Clinical Areas
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SELECTED RESOU RCES
Organizations
■ The Association of Women’s Health, Obstetric, and Neonatal Nurses
(AWHONN): http://www.awhonn.org
■ Depression After Delivery, Inc.: http://www.depressionafterdelivery.
com
■ The Compassionate Friends, Inc.: www.compassionatefriends.org
■ International Childbirth Education Association (ICEA): http://
www.icea.org
■ The International Lactation Consultant Association (ILCA): http://
www.ilca.org
■ La Leche League International: http://www.lalecheleague.org
■ National Council on Family Relations (NCFR): http://www.
ncfr.org
■ NCAST-AVENEW (University of Washington): http://www.
ncast.org
Journals
■ Birth
■ Family Relations
■ Journal of Obstetric, Gynecologic, and Neonatal Nursing (JOGNN)
■ Journal of Perinatal and Neonatal Nursing
■ Nursing for Women’s Health (formally AWHONN Lifelines)
■ MCN: American Journal of Maternal Child Nursing
Family Nursing With Childbearing Families 385
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387
Family Child Health Nursing
c h a p t e r 13
Deborah Padgett Coehlo, PhD, C-PNP, PMHS, CFLE
C r i t i c a l C o n c e p t s
■ A major task of families is to nurture children to become healthy, responsible, and creative adults.
■ Families are the major determinant of children’s health and well-being.
■ Most parents learn the parenting role “on the job,” relying on experiences from their own childhood in their families
of origin to guide them.
■ Parents are charged with keeping children healthy, as well as caring for them during illness.
■ Common health promotion challenges of children and their families are experienced during transitions as individual
members and their families grow and change.
■ Because the leading causes of morbidity and mortality among youth are substance use, sexual activity, and vio-
lence (both suicidal and homicidal), there is need for increased attention to health promotion and prevention in
these areas.
■ Abuse and neglect may be defined differently across cultures, but nurses must be alert to helping families under-
stand when child-rearing practices harm rather than nurture children.
■ Families with children will experience challenges related to specific chronic health conditions, and will have
challenges related to transitions associated with all health conditions, including acute, chronic, and end-of-life
phases.
■ The Family-Centered Care Model can be used by family child health nurses to facilitate and teach healthful activities
for growth, prevention of injury and disease, and management of illness conditions in families.
■ The aim of nurses is to help families develop appropriate ways to carry out family tasks necessary to promote health
and to prevent or positively cope with illness and disease.
■ While most child-rearing families experience acute illnesses and become familiar with managing these crises, families
do not anticipate that their children may have chronic illness.
■ With their knowledge of family and child development, nurses can collaborate with families with chronically ill children
to help them strive toward developmental landmarks.
■ Family child health nursing must be practiced in collaboration and cooperation with families, as well as other health
professionals, according to principles of family-centered care.
3921_Ch13_387-432 05/06/14 11:25 AM Page 387
A major task of families is to nurture children to be-
come healthy, responsible, and creative adults who
can develop meaningful relationships across the life
span. An important job of all parents is to keep chil-
dren healthy and care for them during illness. Yet
most mothers and fathers have little formal educa-
tion for health care of children. In fact, most parents
learn the role “on the job,” relying on their child-
hood experiences in their families of origin to help
guide them. Advice from other parents and profes-
sionals augment information from families of ori-
gin, but this advice is generally implemented only
when questions or problems arise.
Family nurses help families promote health, pre-
vent disease, and cope with illness. The importance
of family life for children’s health and illness care is
often invisible, because families’ everyday routines
are commonplace and lie below the level of aware-
ness. Family daily life, however, influences many
aspects of children’s health, including the promo-
tion of health and the experience of illness in
children. In turn, family daily life is influenced by
the children’s health and illness. Families are groups
with unique characteristics, including specific family
experiences, memories, and related intergenera-
tional relationships; structure and membership;
family rules and routines; aspirations and achieve-
ments; and ethnic or cultural patterns (Burr, Herrin,
Beutler, & Leigh, 1988). Family structure and func-
tion interact with and are influenced by these family
characteristics. Healthy outcomes for children—
such as tripling their birth weight by 1 year of age,
or successfully completing high school—are par-
tially attributable to the intangible, invisible daily
interactions among family members. Nurses, in
partnership with families, examine how the charac-
teristics of families influence health.
Family child health nursing entails employing
nursing actions that consider the relationship be-
tween family tasks and health care and their effects
on family well-being and children’s health. Nurses
care for children within the context of their family,
and they care for children by treating the family as a
whole. Nurses keep in mind that families affect their
children’s health, while children’s health affects their
families. Family child nurses care for children in a
variety of clinical settings and care situations.
This chapter provides a brief history of family-
centered care of children and then presents foun-
dational concepts that will guide nursing practice
with families with children. The chapter goes on
to describe nursing care of well children and fami-
lies with an emphasis on health promotion, nursing
care of children and families in acute care settings,
nursing care of children with chronic illness and
their families, and nursing care of children and
their families during end of life. The case study il-
lustrates the application of family-centered care
across settings.
ELEMENTS OF FAMILY-CENTERED
CARE
Family-centered care is a system-wide approach to
child health care. It is based on the assumption that
families are children’s primary source of nurturance,
education, and health care. Family-centered care
has emerged, in part, in response to increasing fam-
ily responsibilities for health care. The general prin-
ciples of family-centered care include the following:
1. Recognizing families as “the constants” in
children’s lives while the personnel in other
systems, including the health care system,
fluctuate
2. Openly sharing information about alternative
treatments, ethical concerns, and uncertain-
ties with families to guide decision-making
processes
3. Forming partnerships between families and
health professionals to decide jointly what is
important for families
4. Respecting the racial, ethnic, cultural, and
socioeconomic diversity of families and their
ways of coping
5. Supporting and strengthening families’
abilities to grow and develop (Lewandowski
& Tesler, 2003)
See Table 13-1 for more detail on the elements
of family-centered care.
Families are the key health care providers for
children. Families determine the culture of health
care, including establishing healthy living patterns,
care for acute illnesses, and care for chronic illnesses.
Health care providers have recently acknowledged
the importance of families in developing a com-
prehensive and holistic treatment plan for those
children who need health care services. Families ac-
knowledge the uncertainty that surrounds their
child’s health, and they want to be informed part-
ners of the health team’s decision making and valued
388 Nursing Care of Families in Clinical Areas
3921_Ch13_387-432 05/06/14 11:25 AM Page 388
collaborators in the care of their child (Griffin,
2003). In societies that respect diverse opinions, a
health team that includes the family is preferable to
a hierarchical team with physicians at the top, nurses
in between, and families at the bottom. Family-
centered care attends to the importance of families
in health care.
Starting in 1987, Surgeon General Koop began
the initiative to include families on the team that pro-
vided care for children with special needs. Although
the ideas presented were initiated with children with
special health care needs, the elements apply to all
families with children, and both well-child care and
care for children with diagnosed illnesses. The Asso-
ciation for the Care of Children’s Health further de-
fined the specific key elements to family-centered
care in 1994. These elements are now widely ac-
cepted and used by professionals and families with
children with health care needs (Conway et al., 2006):
1. Recognize that the family is the constant in
the child’s life, while the service systems and
personnel within those systems fluctuate.
2. Share complete and unbiased information
with parents about their child’s health on an
ongoing basis. Do so in an appropriate and
supportive manner.
3. Recognize family strengths and individuality.
Respect different methods of coping.
4. Encourage and make referrals to parent-
to-parent support, such as parent support
groups.
5. Facilitate parent/professional collaboration
at all levels of health care—care of an indi-
vidual child, program development, imple-
mentation, and evaluation policy formation.
6. Ensure that the design of health care delivery
systems is flexible, accessible, and responsive
to families.
7. Implement appropriate policies and programs
that provide emotional and financial support
to families.
8. Understand and incorporate the develop-
mental needs of children and families into
the health care delivery systems.
Although family-centered care is recognized as
being key in the care of children, the term itself is not
consistently defined (Shields, Pratt, & Hunter, 2006)
or practiced (Corlett & Twycross, 2006; Power &
Family Child Health Nursing 389
Table 13-1 Elements of Family-Centered Care
Elements Definition
1. The Family Is at the Center
2. Family-Professional Collaboration
3. Family-Professional Communication
4. Cultural Diversity of Families
5. Coping Differences and Support
6. Family-Centered Peer Support
7. Specialized Service and Support Systems
8. Holistic Perspective of Family-Centered Care
The family is the constant in the child’s life.
Collaboration includes the care of the individual child, program development,
policy formation at all levels of care—hospital, home, and community.
Information exchange is complete, unbiased, and occurs in a supportive
manner at all times.
Honors diversity (ethnic, racial, spiritual, social, economic, educational, and
geographical), strengths, and individuality within and across all families.
Recognizes and respects family coping, supporting families with develop-
mental, educational, emotional, spiritual, environmental, and financial
resources to meet diverse needs.
Families are encouraged to network and support each other.
Support systems for children with special health and developmental
needs in the hospital, home, and community are accessible, flexible, and
comprehensive.
Families are viewed as families, and children are viewed as children,
recognizing their strengths, concerns, emotions, and aspirations beyond
their specific health needs.
Source: Lewandowski, L., & Tesler, M. (Eds.). (2003). Family-centered care: Putting it into action. The SPN/ANA
guide to family-centered care. Washington, DC: Society of Pediatric Nurses/American Nurses Association.
3921_Ch13_387-432 05/06/14 11:25 AM Page 389
Franck, 2008). There have been conflicting assump-
tions between nurses and parents about the degree
of parent participation during hospitalization, for
instance. Rather than a direct discussion about
what caregiving parents wanted and could do,
nurses and parents indirectly worked out their roles
during their interactions surrounding the care of
the child (Corlett & Twycross, 2006). In an inte-
grative review of 11 qualitative studies about family-
centered care, Shields et al. (2006) found that care
was a negotiation between families and staff; some
parents felt imposed on when nurses made the
assumption that they would do their children’s
basic care while in the hospital without discussing
it with them first.
CONCEPTS OF FAMILY CHILD
HEALTH NURSING
Several foundational concepts guide nursing care
of families with children: family development or
career, including tasks, communication, develop-
ment of support, transitions, and understanding and
working together with family routines; individual
development; and transitions (e.g., developmental,
situational, and health/illness). Family developmen-
tal theories assume that families and individuals
change over time. Not only do families experience
the various developmental stages of each member,
but they also progress through a series of family
developmental stages. Nurses, by comparing their
observations of particular families to expected fam-
ily and individual developmental stages, can plan
appropriate care (Table 13-2).
Family Career
Family career is the dynamic process of change
that occurs during the life span of the unique
group called the family. Family career incorpo-
rates stages, tasks, and transitions, and is similar
to family development theory in that it takes into
account family tasks and raising children. They
differ, however, in that family development
theory views the family in standard sequential
steps, progressing from the birth of the first child,
to raising and launching children, to experiencing
the death of a parent figure in old age (Duvall &
Miller, 1985). By contrast, family career takes
into account the diverse experiences of American
families (Aldous, 1996). The family career includes
both the expected developmental changes of the
family life cycle, and the unexpected changes
of situational crises, such as divorce, remarriage,
and death.
The notion of family career involves the many
paths that families can take during their life span.
Changes do not necessarily occur in a linear fash-
ion. For example, family career takes into account
the possibility that a person without children
may marry a partner who already has adolescent
children, resulting in starting parenting with ado-
lescent children. This new parent does not build
on parenting skills experienced across time, but
rather starts his career at the end of his child’s
childhood career. Family career is a useful con-
cept because it reminds us that families are
dynamic. Table 13-3 summarizes the definitions
of family career, individual development, and pat-
terns of health/disease/illness in families. Nurses
working with child-rearing families need to know
that family careers are inclusive of family devel-
opment stages, transitions, and diversity because
these dynamics affect family health.
Family Stages
Duvall’s eight stages of family development, based
on the oldest child, describes expected develop-
mental changes in families that are raising children
(Duvall & Miller, 1985). According to Duvall, fam-
ily careers start with marriage without children,
then proceed to childbearing, preschool children,
school children, adolescents, the launching of
young adults (i.e., first child gone to last child leav-
ing home), middle age of parents (i.e., empty nest
to retirement), and aging of family members (i.e.,
retirement to death of both parents). This theory
has been challenged recently with the understand-
ing that families experience several developmental
stages at one time as they care for children of dif-
ferent ages and stages, as well as accommodate
changes and transitions in family structure through
separation, divorce, and remarriage. Knowledge of
family stages helps nurses anticipate the reorgani-
zation necessary to accommodate the expected
growth and development of family members. For
example, families with school-age children expect
children to be able to take care of their own hy-
giene, whereas families with infants expect to do all
390 Nursing Care of Families in Clinical Areas
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the hygiene care. Likewise, family activities shift
with the developmental needs of the individual
family members. Families with preschoolers may
enjoy a day at the playground, whereas families
with adolescents would likely not choose this out-
ing. Nurses can serve families better if they under-
stand and work with families at different stages of
family development. Nurses can also help families
understand competing developmental tasks and
transitions across family members and across time.
Family Tasks
Across all family stages, there are basic family func-
tions and tasks essential to survival and continuity
(Duvall & Miller, 1985): (1) to secure shelter, food,
and clothing; (2) to develop emotionally healthy
individuals who can manage crisis and experience
nonmonetary achievement; (3) to ensure each indi-
vidual’s socialization in school, work, spiritual, and
community life; (4) to contribute to the next gener-
ation by giving birth, adopting a child, or fostering a
child; and (5) to promote the health of family mem-
bers and care for them during illness. The aim of
nurses is to help families develop appropriate ways to
carry out the tasks necessary to prevent or handle ill-
ness and disease, and to promote health.
Transitions
Transitions are central to nursing practice because
they have profound health-related effects on families
and family members (Meleis, Sawyer, Im, Hilfinger
Messias, & Schumacher, 2000). Family transitions
are events that signal a reorganization of family roles
and tasks. The literature supports the idea that how
families transition early in their family careers
strongly influences future transitions (Meleis et al.,
2000). Further, support from health professionals
and other agencies has a positive impact on transi-
tions through time, from early infancy to transition
to adulthood (Rous, Myers, & Stricklin, 2007). The
transitions can be developmental, situational, or
health and illness. Developmental transitions are
predictable changes that occur in an expected time-
line congruent with movement through the eight
family stages (e.g., the addition of a family member
by birth). Because they are typical and expected, de-
velopmental transitions are also called normative
transitions. Thus, family members expect and learn
to interact differently as children grow. Sometimes
families may not make the transition to an expected
family stage. For example, families with children who
have disabilities and are not capable of independent
living have difficulty launching their children because
of lack of residential living facilities and caregivers.
Situational transitions include changes in per-
sonal relationships, roles and status, the environ-
ment, physical and mental capabilities, and the
loss of possessions (Rankin, 1989; Rankin &
Weekes, 2000). Situational transitions are also
called nonnormative transitions. Not all families
experience each situational transition and they
can occur irrespective of time. For example,
changes occur in personal relationships when a
stepchild is integrated into the family group,
when one becomes a new stepparent after divorce
and remarriage. Changes in role and status also
happen when an only child becomes a sibling
after the family adopts another child. This is dif-
ferent than the normative process of having a sec-
ond child through birth, as the preparation
during pregnancy is absent, and the adopted child
is often older than an infant, and can even be
older than the biological child. Changes in
the environment occur when working parents
move to a new job and family members adjust to
a new house, school, friends, and community.
Even greater changes occur when families immi-
grate to a new country, learn a new language and
a new culture, and perhaps have to work at a
lower-status job. A natural disaster can destroy
family possessions and heirlooms, resulting in
stress, fear, a sense of loss, and problems with
family members’ ways of being and interacting
(Schumacher & Meleis, 1994). For nursing care
of families dealing with trauma, see Chapter 11.
Family Child Health Nursing 391
( Text continued on page 396)
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392 Nursing Care of Families in Clinical Areas
Table 13-2 Social-Emotional, Cognitive, and Physical Dimensions of Individual Development
Social-Emotional Stages/ Stage-Sensitive Family
Period Significant Relationships Development Tasks Values Orientation
Infancy
Birth–1 year
Toddlerhood
1–3 years
Undifferentiated
Punishment and
obedience
Trust vs. mistrust (I am
what I am given.)
Primary parent
Autonomy vs. shame or
doubt (I am what I “will.”)
Parental persons
Having, adjusting to, and en-
couraging the development of
infants
Establishing a satisfying home
for both parents and infant(s)
Establishing well-child health
care
Parenting role development.
Learning to parent toddler. De-
veloping approaches to disci-
pline. Understanding child’s
increasing autonomy.
Family planning. Providing safe
environment. Maintaining well-
child health care.
3921_Ch13_387-432 05/06/14 11:25 AM Page 392
Family Child Health Nursing 393
Cognitive Stages Developmental Developmental
of Development Landmarks Physical Maturation Steps
Sensory-Motor Ages—
Birth–2 years
Infants move from neonatal
reflex level of complete self
world undifferentiation
to relatively coherent
organization of sensory-
motor actions. They learn
that certain actions have
specific effects on the
environment.
Recognition of the
constancy of external
objects and primitive
internal representation of
the world begins. Uses
memory to act. Can solve
basic problems.
Anticipation of feeding
Symbiosis (4–18 mo)
Stranger anxiety
(6–10 mo)
Separation anxiety
(8–24 mo)
Self-feeding
Oppositional behavior
Messiness
Exploratory behavior
Parallel play
Pleasure in looking at
or being looked at
Beginning self-concept
Orderliness
Curiosity
Gazes at complete patterns
Social smile (2 mo)
180° visual pursuit (2 mo)
Rolls over (5 mo)
Ranking grasp (7 mo)
Crude purposeful release
(9 mo)
Inferior pincer grasp
Walks unassisted
(10–14 mo)
Words: 3–4 (13 mo)
Builds tower of 2 cubes
(15 mo)
Scribbles with crayon
(18 mo)
Words: 10 (18 mo)
Builds tower of 5–6 cubes
(21 mo)
Uses 3-word sentences
(24 mo)
Names 6 body parts
(30 mo)
Uses appropriate personal
pronouns, i.e., I, you, me
(30 mo)
Rides tricycle (36 mo)
Copies circle (36 mo)
Matches 4 colors (36 mo)
Talks to self and others
(42 mo)
Takes turns (42 mo)
Rapid (Skeletal)
Transitory reflexes present
(3 mo) (i.e., Moro reflex, suck-
ing, grasp, tonic neck reflex)
Muscle constitutes 25% of
total body weight
Birth weight doubles (6 mo)
Eruption of deciduous central
incisors (5–10 mo)
Birth weight triples (1 yr)
Anterior fontanel closes
(10–14 mo)
Transitory reflexes disappear
(10 mo)
Eruption of deciduous first
molars (11–18 mo)
Babinski reflex extinguished
(18 mo)
Bowel and bladder nerves
myelinated (18 mo)
Increase in lymphoid tissue
Weight gain 2 kg per year
(12–36 mo)
(continued)
3921_Ch13_387-432 05/06/14 11:25 AM Page 393
394 Nursing Care of Families in Clinical Areas
Table 13-2 Social-Emotional, Cognitive, and Physical Dimensions of Individual Development—cont’d
Social-Emotional Stages/ Stage-Sensitive Family
Period Significant Relationships Development Tasks Values Orientation
Pre–school-age
3–5 years
School-Age
6–1 2 years
Punishment and
obedience moves to
meeting own needs
and doing for others
if that person will do
something for the
child.
Moves from instru-
mental exchange: “If
you scratch my back,
I’ll scratch yours” into
wanting to follow rules
to be “good.” Then to
rule orientation for
maintenance of social
order.
Initiative vs. guilt (I am
what I imagine I can be.)
Basic family
Industry vs. inferiority (I am
what I learn.)
Neighborhood and school
Adapting to the critical needs
and interests of preschool
children in stimulating, growth-
promoting ways. Monitoring
child development. Seek
developmental screening as
needed.
Coping with energy depletion
and lack of privacy as parents.
Socializing children. Providing
safe environment/accident
prevention. Maintenance of
couple relationship. Fostering
sibling relationships.
Fitting into the community of
school-age families in con-
structive ways. Letting children
go, as they become increas-
ingly independent.
Encouraging child’s education
achievement. Balancing
parental needs with children’s
needs.
3921_Ch13_387-432 05/06/14 11:25 AM Page 394
Family Child Health Nursing 395
Cognitive Stages Developmental Developmental
of Development Landmarks Physical Maturation Steps
Preoperational Thought
(Prelogical)—Ages 2–7
years
Begins to use symbols.
Thinking tends to be
egocentric and intuitive.
Conclusions are based on
what they feel or what
they would like to believe.
Concrete Operational
Thought—Ages 7–12
years
Conceptual organization
increasingly stable. Children
begin to seem rational and
well organized. Increasingly
systematic in approach to
the world. Weight and
volume are now viewed as
constant, despite changes
in shape and size.
Cooperative play
Fantasy play
Imaginary companions
Masturbation
Task completion
Rivalry with parents of
same sex
Games and rules
Problem solving
Achievement
Voluntary hygiene
Competes with partners
Hobbies
Ritualistic play
Rational attitudes
about food
Companionship
(same sex)
Invests in community
leaders, teachers,
impersonal ideals
Task completion
Rivalry with parents of
the same sex
Games and rules
Problem solving
Achievement
Voluntary hygiene
Competes with partners
Has hobbies
Ritualistic play
Rational attitudes
about food
Values companionship
Invest in community
leaders, teachers,
impersonal ideals
Uses 4-word sentences
(48 mo)
Copies cross (48 mo)
Throws ball overhand
(48 mo)
Copies square (54 mo)
Copies triangle (60 mo)
Prints name
Rides two-wheel bike
As child moves through
stage: Copies diamond,
knows simple opposite
analogies, names days of
the week, repeats 5 digits
forward, defines “brave”
and “nonsense,” knows
seasons of the year, able
to rhyme words, repeats
5 digits in reverse, under-
stands pity, grief, surprise,
knows where sun sets, can
define “nitrogen” and
“microscope”
Weight gain 2 kg per year
(4–6 yr)
Eruption of permanent teeth
(5.5–8 yr)
Body image solidifying
Weight gain 2–4 kg per year
(7–11 yr)
Uterus begins to grow
Budding of nipples in girls
Increased vascularity of penis
and scrotum
Pubic hair appears in girls
Menarche (9–11 yr)
(continued)
3921_Ch13_387-432 05/06/14 11:25 AM Page 395
396 Nursing Care of Families in Clinical Areas
Table 13-2 Social-Emotional, Cognitive, and Physical Dimensions of Individual Development—cont’d
Social-Emotional Stages/ Stage-Sensitive Family
Period Significant Relationships Development Tasks Values Orientation
Adolescence
13–20 years
Early Adulthood
Middle Adulthood
Late Adulthood
Increasing internaliza-
tion of ethical stan-
dards; can use to
make decisions.
Principled social
contract
Self-actualization—
doing what one is
capable of.
Universal ethical
principles
Identity vs. role confusion
(I know who I am.)
Peer in-groups and
out-groups
Adult models of leadership
Intimacy vs. isolation
Partners in friendship, sex,
completion
Generativitiy vs. self-
absorption or stagnation
Divided labor and shared
household
Integrity vs. despair, disgust
“Humankind”
“My kind”
Balancing freedom with
responsibility as teenagers
mature and emancipate
themselves.
Maintaining communication
with teen.
Establishing post-parental
interests and careers as grow-
ing parents.
Releasing young adults into
work, military service, college,
marriage, and so on with
appropriate rituals and
assistance.
Maintaining a supportive
home base.
Refocusing on the marriage
relationship.
Maintaining kin ties with older
and younger generations.
Coping with bereavement and
living alone.
Closing the family home in
adapting to aging.
Adjusting to retirement.
Health-illness transitions are changes in the
meaning and behavior of families as they experi-
ence an illness over time. Even though there are
different diseases and conditions, the illness expe-
rience follows a pattern of prediagnosis signs and
symptoms, crisis of diagnosis, daily management of
the condition called the “long haul,” and resolved
or terminal phase (Rolland, 2005). Knowing the
trajectory of a condition helps nurses and families
recognize transition points and learn new ways of
coping. For example, a family that has learned to
manage its child’s asthma requires new coping
strategies when hospitalization occurs after the
child’s asthma symptoms are complicated by an
upper respiratory illness and become too severe to
manage at home. The family will need to reorgan-
ize itself to deal with the child’s hospitalization and
possibly learn to implement different asthma man-
agement approaches after hospitalization.
Transition events are signals to nurses that fami-
lies may be at risk for health problems. Although
families work to create and implement strategies to
Adapted from Duvall, E. M., & Miller, B. C. (1985). In Marriage and family development (6th ed., p. 62). New York,
NY: Harper and Collins; Prugh, D. (1983). The psychological aspects of pediatrics. Philadelphia, PA: Lea & Febiger;
Thomas, R.M. (2005), Comparing theories of child development (6th ed.). Belmont, CA: Wadsworth; and Duvall,
E. M., & Miller, B. C. (1985). Developmental tasks: Individual and family. In E. M. Duvall & B. C. Miller (Eds.),
Marriage and family development. New York, NY: Harper & Row.
3921_Ch13_387-432 05/06/14 11:25 AM Page 396
Family Child Health Nursing 397
Cognitive Stages Developmental Developmental
of Development Landmarks Physical Maturation Steps
Formal Operational Thought
Abstract thought and
awareness of the world of
possibility develop.
Adolescents use deductive
reasoning and can evaluate
the logic and quality of
their own thinking.
Increased abstract power
allows them to work with
laws and principles.
“Revolt”
Loosens tie to family
Cliques
Responsible
independence
Work habits solidifying
Heterosexual interests
Recreational activities
Preparation for
occupational choice
Occupational
commitment
Elaboration of recre-
ational outlets
Marriage readiness
Parenthood readiness
Knows why oil floats on
water.
Can divide 72 by 4 without
pencil or paper.
Understands “espionage.”
Can repeat six digits for-
ward and five digits in
reverse.
Spurt (Skeletal)
Girls 1.5 years ahead of boys.
Pubic hair appears in boys.
Rapid growth of testes and
penis.
Axillary hair starts to grow.
Down on upper lip appears.
Voice changes.
Mature spermatozoa
(11–17 yr).
Acne may appear.
Cessation of skeletal growth
Involution of lymphoid tissue
Muscle constitutes 43% total
body weight
Permanent teeth calcified
Eruption of permanent third
molars (17–30 years)
keep their children safe, these safety measures often
fall behind during times of transition as parents find
themselves coping with the stress of transition while
continuing to cope with parenting stress. A develop-
mental example is placing a crawling infant in a
playpen to decrease the risk of falling while the par-
ent is temporarily busy. When the infant transitions
from crawling to pulling up to standing and walking,
the family needs to allow the child to expand her
environment by allowing her out of the security of
the playpen and by modifying the environment to
make it safe for her. A situational example occurs
when a married family transitions to a divorced fam-
ily. Parents will need to think about new routines for
caring for the children. In a two-parent family, one
parent may have gotten breakfast ready while the
other parent attended to the child. Now one parent
will be doing both. An example of a health and illness
transition would be when a child is diagnosed with
type 1 diabetes mellitus. The family will make major
changes in family tasks to accommodate the nutrition
and medication needs of one member. Nurses, by
3921_Ch13_387-432 05/06/14 11:25 AM Page 397
assessing families for anticipated changes related to
family and child developmental transitions, as well as
situational and health-illness transitions, can help
families plan for changes.
Individual Development
It is important to consider the individual develop-
ment of all the family members in nursing care of
families with children. Child-raising families are
complex groups of adults and children at different
stages of development. A schematic overview of
human development highlights the stages of indi-
vidual experiences over time. Adult developmental
needs may complement or conflict with children’s
developmental needs.
When nurses review with families the individ-
ual family member’s developmental stages that
are occurring concurrently among children and
adults, they validate the complexity of family in-
teractions. Through this review process, nurses
can assist families to accommodate to children’s
and adults’ changing needs, abilities, and thought
processes across time. Table 13-2 presents three
dimensions of individual development: social-
emotional, cognitive, and physical. The table is
meant to be a guide and is not all-inclusive; it may
not be representative of all cultures or socioeco-
nomic statuses. Nurses can use these dimensions
to identify expected developmental progression
and potential areas of concern for families. This
table can also be used to help understand when
parents of children with developmental disabilities
may feel recurrent sorrow, as they watch their
child miss expected milestones (Blaska, 1998).
NURSING INTERVENTIONS
TO SUPPORT CARE OF WELL
CHILDREN AND FAMILIES
Families are the context for health promotion and
illness care for all family members, including chil-
dren. Family beliefs, rituals, and routines affect the
health of all family members, including, for instance,
traditional health practices around food, eating, and
types of food served at meals; physical activity and
rest; use of alcohol and other substances; and pro-
viding care and connection for family members
(Novilla, Barnes, De La Cruz, Williams, & Rogers,
2006). Christensen (2004) concluded that the role of
families in health promotion of children goes be-
yond protecting their health, well-being, develop-
ment, and decreasing risk behavior, to teaching
children to be “health promoting actors” by encour-
aging their active participation in health care and
providing information and having them make their
own healthy life choices. Families are, of course,
linked to and interact with their larger environ-
ments. See Chapter 3 for a discussion on the bioe-
cological theory (Bronfenbrenner, 1997).
In well-child care, families are considered the care
environment for their children. Proposed nursing
outcomes of current well-child care focus on fam-
ily functioning and capacity, or the ability to care and
nurture children while providing a safe and develop-
mentally stimulating environment. Specific outcomes
include that parents: (a) are knowledgeable about their
children’s physical health status and needs; (b) feel
valued and supported as their children’s primary care-
giver and teacher, and function in partnership with
398 Nursing Care of Families in Clinical Areas
Table 13-3 Definitions of Family Career, Individual Development, and Patterns of Health/Disease/Illness
Term Definition
Family career
Individual development
Health and illness
Families and their members experience
dimensions of health while managing illness
among members.
The dynamic process of change that occurs during the life span of the
unique group called the family. Whereas family development views the
family in standard sequential steps or stages, family career takes into
account the diverse experiences of American families that do not occur in
anticipated stages.
Physical and maturational change of the individual over time. Some theories
perceive change as stages, and others are interactional change.
Health is behavior that promotes optimal dimensions of well-being. Family
and individual health is multidimensional; therefore, a family and/or member
can have a disease and be “healthy” in another dimension of health.
Illness is a disease (and family management of the disease) that may be
acute (time-limited), chronic (live with over time), or terminal (end-of-life).
3921_Ch13_387-432 05/06/14 11:25 AM Page 398
their children’s health care providers and teachers;
(c) are screened for maternal depression, family vio-
lence, and family substance abuse and referred to spe-
cialists when needed; (d) understand and are able to
use well-child care services; (e) understand and can
implement developmental monitoring, stimulation,
and regulation such as reading regularly to their chil-
dren; (f ) are skilled in anticipating and meeting their
children’s developmental needs; and (g) have access
to consistent sources of emotional support and are
linked to appropriate community services (Schor,
2007). In promoting child and family well-being,
nurses support families in care of their children using
the following skills and interventions:
■ Communicating with families
■ Supporting development of parenting skills
and healthy family functioning
■ Understanding and working with family
routines
■ Identifying health risks and teaching preven-
tion strategies
■ Supporting health promotion in families with
children
Communication With Families
Therapeutic communication with family groups is
the foundation of nursing care of families with chil-
dren. One important feature of communication with
families with children is including all of the family
members in a discussion or interaction (Wright &
Leahey, 1999). In initial communication, Cooklin
(2001) recommends that each family member be
asked to introduce himself or herself, beginning with
the parent or adults of the family, and proceeding
with each family member in order of age from oldest
to youngest. North American children are often val-
ued as autonomous beings. Research supports that
children want to be consulted about decisions con-
cerning their health care and want their opinions to
be respected (Coyne, 2006). Nurses can assure chil-
dren that they have a “real voice” by inviting them
to speak, conveying that their opinion really matters,
and demonstrating genuine interest in their point of
view. Because the role of children in social situations
is influenced by family culture, it is important to con-
firm that the children feel that they have permission
to choose how they want to participate and that the
parents confirm that they will allow the children to
participate freely in the discussion (Cooklin, 2001).
Another important feature of communication with
families is considering and adjusting communication
style, content of message, and vocabulary for devel-
opmental appropriateness for each family member
(Barnes et al., 2002; Cooklin, 2001; McKinney,
James, Murray, & Ashwill, 2005). Engaging children
in a casual conversation initiates a beginning relation-
ship. Coyne’s study (2006) found that children wanted
to “chat” with the nurse, to know a little about the
nurse as a person, and wanted the nurse to know
about them. Instead of starting the conversation with
the reasons behind the hospital visit, children wanted
to start the conversation with questions they were fa-
miliar with and were used to answering, such as their
age, grade, and where they live. Asking children what
they are good at, followed by asking about personal
experiences, can enhance the start of a therapeutic
relationship. Playfulness may assist in establishing
communication with children. Children’s tempera-
ment influences how they engage with new experi-
ences and new people. A quiet, shy child, for example,
often wants to watch and see what others are doing
before interacting with new people. Instead of asking
questions, a nurse may elicit more conversation by
inviting the shy child to color together and chat dur-
ing an activity instead of putting the focus on what
the child is saying. “Draw and tell” helps nurses learn
what children are thinking (Driessnack, 2005). Asking
children to draw their family and tell the nurse about
the picture starts a meaningful conversation. As a
child becomes more comfortable with the nurse, the
nurse can ask the child to draw the clinic or hospital
and tell about the picture. Another strategy to use to
communicate with children is play. Similar to draw-
ing, playing a developmentally appropriate game
with children helps them to relax and share their
thoughts and feelings.
Cognitively, children developmentally move from
concrete to abstract thought. Careful explanation of
abstract concepts using real objects is especially im-
portant when working with children younger than
middle-school age. If explaining surgery, for exam-
ple, children will understand more if shown what the
incision and bandage will look like on a doll or stuffed
animal with a drawn incision and bandage on the
appropriate body part rather than just explaining the
process verbally (Li & Lopez, 2008). See Box 13-1
for examples of discussing surgery with children. It
is important to validate or confirm with all family
members that the message conveyed is understood
and to explain medical words fully. Use of clichés,
such as “this won’t hurt” or “it will be over before
you know it,” are rarely appropriate when commu-
nicating with children and adolescents. The amount
Family Child Health Nursing 399
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400 Nursing Care of Families in Clinical Areas
BOX 13-1
Preparing Children and Their Families for Surgery Using Hospital Play
Children learn by doing and playing. Using dolls and real
equipment helps children know what to expect and act
out their fears. Having parents observe helps them learn
how to help their child using play.
Before starting, consult with the physician and parent
to learn what information the child has been given.
Decide the appropriate explanation for age and emotional
maturity. For young children use neutral words such as
opening, drainage, and oozing instead of cut and bleed.
Gather the visual aids (e.g., pictures, doll) and equipment
to be used. Do not give too much information because
the child may be overwhelmed. Plan for three sessions:
why she needs surgery, what the operating room is like,
and what she will feel and do after surgery.
If a child has never been in the hospital, have toys
familiar to the child such as blocks, doll houses, and stuffed
animals available along with “real” equipment such as a
doll with bandages similar to what child will have, operating
room masks, scrubs that nurses and doctors wear, and
IV poles. The child may play with the familiar toys. As the
child observes the nurse, tell the story of what will happen
to the doll using the “real” equipment on the doll, and the
child will learn that the equipment is safe.
Session 1: How Will the Surgery Make You Better?
Ask the child what she thinks is going to happen. A child
may be silent or say, “I do not know,” when talking to a
stranger. You can repeat a simple explanation reinforcing
what she knows.
Reassure the child that no one is to blame for her con-
dition; make it clear that nothing she did is responsible.
Using the doll, show where the surgery will take place
and what the surgery will do to make her better.
Session 2: What Will the Operating Room Be Like
and What Will Happen Before the Surgery?
Review why surgery will make the child better.
Talk about the steps of getting ready for surgery,
such as not eating or drinking the night before and
what the operation room will smell like (alcohol), feel
like (cold), and look like (big lights, a clock, people in
special clothes).
Child will wear special clothes (hospital gown).
Note: Toddlers’ body image includes keeping on their
underwear, because they have just finished learning
toilet training.
Put a mask on the face and talk about a “funny smell.”
Use a real anesthesia mask on the doll and have the
child do this too. This gives the child some control.
Play with the thermometer, blood pressure cuff,
and stethoscope for taking temperatures and listening
to heartbeats and breathing on the doll and nurse and
parent.
Show pictures of an operating room. Point out the “big
lights,” the clock, the nurses, and doctors dressed in blue
(or whatever color your hospital personnel wear in the
operating room suites) clothes and wearing “masks.” Talk
about the ride on a bed with wheels and doors that open
like grocery store doors. These are things the child is
familiar with and will notice.
Reaffirm that parents will walk with them to the oper-
ating room and be with them when they wake up from
the surgery. Play with a mommy doll walking with the toy
doll going to the operating room. Children need to know
that their parents know where they are and will be there
for them.
Session 3: Postoperative Expectations
Using dolls, act out what will happen after surgery:
■ Soreness at the site of surgery
■ Pain and medication
■ Positioning (how to turn after surgery, deep breathe,
and cough)
■ Bandages (the word “dressing” may be understood
as “turkey dressing” at Thanksgiving, or playing
“dress-up”)
■ No eating and drinking right away
of information given also varies across cultures and
across individuals. Nurses should be careful not to
overwhelm family members with information they
do not want or understand. Many cultures rely and
trust health professionals to make health decisions,
and when too much information is given, they ques-
tion that trust. Other cultures and individuals, in con-
trast, want as much information as possible, and feel
uncomfortable when they perceive information is not
being shared. Each culture tends to have an identified
adult that accepts and conveys information to other
family members. These differences should be con-
sidered during all teaching opportunities.
Supporting Development of Parenting
Skills and Healthy Family Functioning
Providing support for the development of parent-
ing skills is an important nursing intervention. Be-
ginning at birth, children have a need for warm,
3921_Ch13_387-432 05/06/14 11:25 AM Page 400
affectionate relationships with parents. One of the
earliest parenting skills found to establish healthy
caregiving behavior is a parent’s responsiveness to
the infant’s cues. Responsiveness is noticing and
interpreting the infant’s cues, then acting promptly
in response to those cues. For example, if an infant
looks away from a parent, a responsive parent will
decrease stimulation until the infant turns back and
reestablishes eye contact. An integrative research
review about responsive parenting concluded that
in developed countries maternal responsiveness in
early childhood was positively correlated with in-
creased intelligence quotient (IQ), whereas unre-
sponsiveness was associated with lower IQs and
higher childhood behavior problems. In developing
countries, maternal responsiveness was associated
with increased IQ, as well as with increased survival
and growth, thought to be related to improved nu-
trition through positive interaction during meal
times (Eshel, Daelmans, de Mello, & Martines,
2006). A more recent study of 40 European American
mothers confirmed these results, revealed a strong
relationship between mother’s interaction with
toddlers and preschoolers and the children’s rate of
development (Bornstein, Tamis-LeMonda, Hahn,
& Haynes, 2008).
After the infancy period, parents begin to de-
velop a “style” of nurturing and caring for their
children. The parenting style of either two-parent
or one-parent families influences outcomes in
children, including health, academic achievement,
and social development (Baumrind, 1991, 2005;
Richaud de Minzi, 2006). An authoritative parent-
ing style is characterized by reciprocity, mutual
understanding, shared decision making, and flex-
ibility (Sorkhabi, 2005). While parents using this
style convey clear expectations and “demands” of
their children, those expectations take into con-
sideration their children’s developmental level
and individual strengths, weaknesses, and person-
ality traits, and parents provide rationale for and
support to meet those characteristics, as well
as warmth in their relationship with the children
(Baumrind, 2005). This parenting style promotes
feelings of competence in the children. The ulti-
mate goal is to promote positive self-esteem and
autonomy in their children. Authoritative parent-
ing styles influence health by providing the ongo-
ing message that the children have some control
over good health and healthy lifestyle choices
and have a positive responsibility to care for their
own health through these life choices (Luther,
2007). The outcomes of this parenting style
are positive across time and across cultures.
While behaviors may be more difficult during
preschool years as children are given more
chances to negotiate with parents than other par-
enting styles, long-term outcomes tend to be better
(Underwood, Beron, & Rosen, 2009). Variables
studied include self-reliance, self-competence, ac-
ademic performance, socially accepted behavior,
and social acceptance. Williams, Ciarrochi, and
Heaven (2011) illustrated that authoritative par-
enting styles increased flexible problem-solving
skills of adolescents across 6 years compared
to other parenting styles. Other family character-
istics associated with healthy authoritative par-
enting and well-child health outcomes include
parent engagement, closeness, communication,
positive discipline techniques, and healthy role
modeling. These positive qualities have corre-
lated with increased adolescent social competence
and self-esteem, health-promoting behaviors, and
less drug abuse, as well as fewer externalizing
(e.g., aggression and anger) and internalizing be-
haviors (e.g., depression).
Authoritarian parenting style, in contrast, is an
inflexible and unilateral style in which parents have
clear expectations and demands of their children,
but insist on compliance with the parental percep-
tion of what is best for their children, with limited
explanation and rationale or acceptance of their
children’s perceptions (Sorkhabi, 2005). The au-
thoritarian style promotes the belief that children
should not control their own behavior and cannot
contribute to decisions about their own health care
because they do not have the knowledge or experi-
ence needed to make good decisions (Luther,
2007). Several studies have shown short- and long-
term negative effects of authoritarian parenting
styles across ethnic groups and cultures. For exam-
ple, children raised by authoritarian parents tend
to be less socially accepted and less self-reliant and
have poorer academic outcomes across the United
States, India, and China (Chen, Dong, & Zhou,
1997; Rao, McHale, & Pearson, 2003; Steinberg,
Dornbusch, & Brown, 1992; Steinberg, Lamborn,
Dornbusch, & Darling, 1992). When asking adults
to recall parenting styles used by their parents,
those who recalled authoritarian parents have a
higher rate of depressive symptoms and poor
psychological adjustment across time (Rothrauff,
Family Child Health Nursing 401
3921_Ch13_387-432 05/06/14 11:25 AM Page 401
Cooney, & An, 2009). Family aggression and
parental aggravation commonly found in authori-
tarian parenting were associated with less social
competence, less health-promoting behavior, and
lower self-esteem scores (Youngblade et al., 2007).
The long-held consensus is that children fare bet-
ter when praised than when criticized or punished
(Schmittmann, Visser, & Raijmakers, 2006).
Permissive parenting style allows children to
pursue child-determined goals with little guidance
from the parents. Parents using this style tend to
ignore behavior problems and may not provide the
organizational support needed to assist children in
reaching goals (Sorkhabi, 2005). Children raised in
the permissive style are less assertive and achieve-
ment oriented, and are more likely to develop in-
effective and possibly dangerous coping strategies
such as using drugs, compared with authoritative
and authoritarian parenting styles (Baumrind,
1991; Washington and Dunham, 2011). Permissive
parents can be nurturing and warm, but too passive
to establish healthy boundaries. Or they may be
rejecting or neglecting in their parenting style, in
which case, along with having limited expectations
and responsiveness, these parents can also be puni-
tive and have a negative reaction to parent-child
interactions, as well as lack of parental involvement
with the children. This passive, but negative,
parenting style is also associated with generally
poor academic and social-emotional outcomes
(Baumrind, 1991; Williams et al., 2012).
The fourth parenting style studied is the unin-
volved parent. This parenting style is similar to the
permissive parenting style, except the parent(s) not
only lacks clear boundaries and expectations, but
also lacks any nurturing, warmth, and responsive-
ness (Maccoby & Martin, 1983). The outcomes of
these children are considered far worse than the
first three parenting styles, with children being
at risk for negative coping strategies, including
poor academic performance, drug abuse, criminal
behavior, and poor social acceptance across time
(Steinberg, 2001).
The findings regarding parenting style and
childhood outcomes span cultures and geographi-
cal locations. One review paper, for example, con-
cluded that in collectivist or interdependent
cultures, authoritarian and authoritative styles had
similar outcomes as found in individualist cultures
(Sorkhabi, 2005). The effects not only cross cul-
tures, but also cross time, as studies showing similar
outcomes across cultures have been consistent from
the early studies in the 1980s to more recent studies
into the 2000s (Rao et al., 2003).
Nurses can teach about parenting styles and help
parents adopt authoritative parenting strategies
when doing health promotion and illness care with
child-raising families (Bond & Burns, 2006). Numer-
ous studies have revealed that increasing knowledge
about parenting increases authoritative parenting
practices. Likewise, authoritative parents often seek
out parenting knowledge from the moment they dis-
cover they will be parents (Washington & Dunham,
2011). Early interest in parenting leads to early pos-
itive attachment practices, and later warm and in-
volved parenting strategies. Differing parenting
styles between the two parents in one family can
cause conflict in both stable and divorced families.
Using counseling and education with parents can
help them recognize and reflect on their differences,
which can lead to a united change toward more
authoritative practices.
Nursing interventions for family-focused well-
child care include identification of teachable mo-
ments to discuss child development, explore parental
feelings, model positive interactions with children,
and reframe parents’ negative attributions about
their children’s behavior. For example, a nurse may
help a parent to see that a child’s temper tantrum
may be a sign of independence and a need to com-
municate new thoughts and feelings without the lan-
guage to do so, rather than a deliberate behavior to
embarrass or disobey the parent. The positive health
outcomes from parents learning more appropriate
parenting include using less physical and harsh dis-
cipline approaches, increasing use of safety strategies
such as placing newborns on their backs to sleep, in-
creasing likelihood that children will have up-to-
date vaccines, and increasing family time spent in
pleasurable interactions and experiences. Nursing
actions to reduce negative outcomes in child-raising
families are to identify parental risk factors associ-
ated with abuse/neglect such as depression, family
violence, drug and alcohol use, and cigarette smok-
ing (Zuckerman, Parker, Kaplan-Sanoff, Augustyn,
& Barth, 2004). In contrast, children’s readiness for
school has been found to be related to identifying
and supporting parental strengths, promoting strong
parent-child relationships, teaching parents about
child development, and involving parents in activi-
ties that encourage learning (Zigler, Pfannenstiel, &
Seitz, 2008).
402 Nursing Care of Families in Clinical Areas
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Understanding and Working With
Family Routines
Establishing daily routines and family rituals is an
important health promotion strategy. These pre-
dictable patterns influence the physical, mental,
and social health of children, as well as the health
of the family itself (Denham, 2002). Nurses help
families integrate physical, social-emotional, and
cognitive health promotion into family routines;
and in doing so, they affirm positive patterns of
health or provide alternative ones (Greening,
Stoppelbein, Konishi, Jordan, & Moll, 2007). Dis-
cussing or observing family routines and rituals
offers the potential, in a nonthreatening way, to
gain entrée and understand family dynamics to a
greater depth (Denham, 2003). Routines are im-
portant to all families in all settings. For instance,
predictable and familiar routines were used by
parents in homeless shelters to preserve family
bonds and their connection with their community
(Schultz-Krohn, 2004). Conversely, because rou-
tines and rituals have great meaning and stability
for families, it is important to recognize that they
are potential threats and barriers when imple-
menting new prevention or treatment interven-
tions, as these changes will change the stability
and predictability of a family’s routines and rituals
(Segal, 2004). Nurses can help families understand
the importance of maintaining healthy routines,
especially during times of transition such as di-
vorce or hospitalization.
Child Care, After-School Activities, and
Children’s Health Promotion
Child-raising families nurture children through
partnerships with siblings, extended family mem-
bers, nonrelated child care providers, teachers, and
other adults within the community. These relation-
ships help to establish and maintain the family rou-
tines that are so important to health and child
development. An important trend of American fam-
ilies today is the increasing number of women with
children in the workforce requiring assistance with
child care. This trend is partly due to economic
changes, increases in family instability and divorce,
and the continued increase in the number of single-
headed households, primarily women. In 1975, 47%
of women with children under age 18 years were in
the labor force; by 1990, that figure was 52%
(Bianchi, 1995). In 2012, close to 75% of mothers
were in the labor force, with three out of four work-
ing full time (Child Care Aware of America, 2013).
Sixty-one percent of working mothers had children
under the age of 3 years (U.S. Department of Labor,
Bureau of Labor Statistics, 2011).
Another important trend is the speed at which
mothers return to work after the birth of their ba-
bies. In 1960, only 10% of mothers worked within
3 months of giving birth. In 2009, that percentage
rose to 42% (Bianchi, 1995), and by 2010 that per-
centage rose to 57% (Bureau of Labor Statistics,
2013). This trend continues to grow in spite of
mounting evidence that children fare better when
parents provide care for the first year of life (Offer
& Schneider, 2012). Another important trend is the
decreased birth rate for women with higher educa-
tion levels. This trend is international, and highest
among Japanese women. The societal impact is a
growing number of low-educated mothers raising
a majority of children. Meanwhile, low-educated
men are choosing not to marry or have children.
This trend has caused, in part, the growing number
of low-educated single women raising children,
while highly educated professional couples are
choosing careers over child rearing. Family care
policies are changing internationally to address this
trend, with increased paid time off, increased sup-
port of early childhood education, and increased
pressure on employers to secure parents’ jobs and
job opportunities regardless of family leave.
Many families search for the best routines to bal-
ance family and work. Care for children while
mothers are at work is divided between fathers,
grandparents, other relatives, friends, neighbors,
other nonpaid care, lay professional care (e.g.,
nannies and unlicensed providers), licensed home
care providers, or licensed and certified center
care providers. In 2005, the trend for care while
parent(s) worked continued to be split between rel-
atives and paid nonrelative employees. Thirty per-
cent of the 11.3 million children less than 5 years
whose mothers were employed were cared for by a
grandparent during their mother’s working hours.
A slightly higher percentage was cared for in a
home-based or center-based child care facility or
preschool. Fathers cared for 25% of children, while
siblings cared for 3%, and other relatives cared for
8% during mothers’ working hours (U.S. Census
Bureau, 2008). Today, that trend continues with
51% of children being cared for by their parents
Family Child Health Nursing 403
3921_Ch13_387-432 05/06/14 11:25 AM Page 403
up until age 3, and 31% being cared for in formal
child care centers (Offer & Schneider, 2011). Some
parents strive to work nontraditional hours, flexible
hours, and work while caring for their children to
avoid the risks and costs of formal child care. Stud-
ies, reveal, however, that parents working either
nontraditional hours or trying to work while caring
for their infant spend less quality time with their
infant than other mothers, and struggle to find con-
sistent and high-quality care for their children dur-
ing nontraditional hours (Moss, 2009). Moss (2009)
found, in a qualitative study of parents in New
Zealand, that when given a choice, most parents
would choose to work fewer hours when caring for
young children, but feel they cannot make that
choice because of the effect on family finances and
job opportunities. Similar results have been found
in studies in the United States across socioeco-
nomic classes (Hertz & Fergusen, 1996).
The quality of early childhood education and
support for children is an ongoing concern for par-
ents and societies. Multiple studies have docu-
mented the importance of education and training
of early childhood teachers, developmentally appro-
priate environments, activities and equipment, and
a recommended safe and effective teacher. Things
to consider include child/teacher ratio, culturally
appropriate learning strategies, family involvement,
and nurturing and caring interactions between the
teacher and the children. Nevertheless, most fami-
lies are forced to choose child care based on cost
rather than quality. Not surprisingly, families in
poverty who paid for child care in 2005 spent a
greater proportion of their monthly income on
child care than did families at or above the poverty
level (i.e., 29% compared with 6%) (U.S. Census
Bureau, 2008). Nurses can assist with this concern
by educating families about employers providing
stipends or pretax payments of child care, or about
use of government stipends and tax credits for child
care, by referring families to Child Care Resource
and Referral Services (Child Care Resource and Re-
ferral Network, n.d.), and by discussing with them
the possibility of flex hours to share child care re-
sponsibilities between mothers and fathers. Families
composed of minority groups and families with
children with disabilities require special considera-
tion when choosing child care and after-school
options (U.S. Census Bureau, 2008).
School-age children often attend before- and
after-school care programs. Some children care for
themselves and that number increases with the age
of the child. Six percent of children ages 5 to 11
care for themselves, and 33% of children ages 12 to
14 regularly care for themselves (U.S. Census Bu-
reau, 2008). It is important that families whose
children care for themselves understand safety
measures, such as having a contact person the child
can call in an emergency; concealing the house key
during the school day so that it is not readily ap-
parent that the child will be going home alone; and
setting rules about safety, allowing friends in the
house when parents are not present, and screen
time (e.g., television, video games, and computer).
Nurses can educate parents on the risks for chil-
dren being alone at home during afternoon and
early evening hours, including loneliness, increased
fears, increased criminal activity, and increased
adolescent sexual activity and teen pregnancy.
Nurses, parents, teachers, governmental agen-
cies, and other invested community members must
work together to develop before- and after-school
programs at schools, homework telephone services
with teachers and teachers’ aides during the school
year, and community center programs during the
summer months, holidays, and other times when
school is not in session and parents continue to
work. Nurses can help families review the types of
child care and after-school options available and
examine the site for health protection features.
They can also participate on community boards
that advocate for and regulate these facilities. By
supporting working parents and care of children
during working hours, healthy and predictable
family routines are better maintained. Lack of re-
liable, predictable, and safe care for children during
work hours is a significant threat to family health.
Identifying Health Risks and Teaching
Prevention Strategies
Because of the relationship between health behav-
iors and illness or death, increased attention to un-
healthy social-emotional behaviors is an important
part of nursing practice in families with children.
Specifically, nurses assess for, identify, and provide
interventions to reduce risk factors associated with
morbidity (sickness) and mortality (death). Specific
risk factors include safety concerns for uninten-
tional and intentional injuries and death; patterns
leading to overweight and obese children and ado-
lescents; lack of parenting knowledge and support
404 Nursing Care of Families in Clinical Areas
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associated with family violence and child maltreat-
ment; health concerns more common to families
living in poverty, including higher rates of violence,
drug use, and teen pregnancy; and mental health.
Unintentional and Intentional Injuries
The leading cause of death among children and
youth is unintentional injuries from accidents. In
2003, more than 4,000 children, ages 1 to 14 years,
died from unintentional injuries (National Center
for Injury Prevention and Control, 2006). The lead-
ing cause of unintentional injuries is motor vehicle
crashes, causing the death of an average of six chil-
dren per day ages 1 to 14 years (NHTSA.dot.gov,
National Center for Statistics and Analysis, 2003).
The risk for motor vehicle crashes is higher among
youth ages 16 to 19 years than for any other group
and substance abuse, primarily alcohol, is consid-
ered a contributing factor in a majority of these
accidents (National Center for Injury Prevention
and Control, 2006). It is crucial that children of all
ages be properly restrained for their age and body
size in motor vehicles, and that all adolescents par-
ticipate in traffic education and receive repeated
information on the risks of driving under the influ-
ence of drugs and/or alcohol.
Intentional injuries are the second highest cause
of death in children, particularly adolescents.
Homicide and suicide are the second and third
leading cause of death for children ages 12 to
19 (National Center for Injury Prevention and
Control, 2006). Suicide rates increase for minority
groups throughout the United States. For example,
Native Alaskan and Native American youth be-
tween the ages of 10 and 18 years have a suicide
rate of 10.37 per 100,000, compared with an overall
rate of 3.95 per 100,000 (Centers for Disease Con-
trol and Prevention [CDC], 2012). The access to
firearms, especially in high-risk groups, increases
this risk.
Family child health care nurses can teach and
support families in prevention of unintentional and
intentional injuries. For example, nurses can teach
appropriate car seat restraints and water safety.
They can educate parents on child proofing the
home to prevent poisoning and electrical burns
from uncovered electrical outlets in toddlers.
Teaching the importance of bicycle helmet use and
helping families locate resources when they have
limited financial means for purchasing helmets can
help to minimize head trauma from bike accidents.
Nurses, either in an informal role as a next-door
neighbor or a formal role as working at community
or clinic programs, can help parents understand the
importance of and access approved safety devices,
such as car seats, helmets, and door/cabinet locks.
Nurses can be key educators in recognizing signs
and symptoms of suicide in adolescents, and can sup-
port friends and family members in getting help
when these signs and symptoms are identified. Fam-
ily nurses can also be key professionals to teach gun
safety to families to prevent unintentional and inten-
tional injury from firearms. Many communities are
adopting suicide prevention strategies to reduce sui-
cide rates, including decreasing risk factors (e.g., bul-
lying, exposure to violence, access to firearms, and
substance abuse), and increasing protective factors
(e.g., cultural connectiveness, improved access and
awareness of mental health care, and development
of crisis response teams to major family and com-
munity traumas) (CDC, 2012). Nurses are impor-
tant to these efforts from the individual and family
level of education and support, to the community
level of advocacy and participation in identifying and
supporting needed change.
Obesity and Overweight in Families
With Children
Nurses help families recognize the harm and offer
methods to intervene for one of the leading public
health problems, obesity. Although obesity rates in
children have reached a plateau over the past decade,
the rates continue to be a major concern for chil-
dren’s health. Studies across the past 5 years indicate
that up to 27% of all children ages 2 to 5 years were
overweight (Ogden, 2012). Between 1980 and 2010,
the percentage of children ages 6 to 11 years who
were obese increased from 7% to 32.6%; for ado-
lescents, it increased from 5% to 33.6% (Ogden,
Carroll, Kit, & Flegal, 2012). Overweight and obese
family members, including children, are at increased
risk for type 2 diabetes, hypertension, hyperlipi-
demia, cancer, asthma, joint problems, social rejec-
tion, and depression (Jeffreys, Smith, Martin,
Frankel, & Gunnell, 2004; Miller, Rosenbloom, &
Silverstein, 2004; Ogden et al., 2012; Urrutia-Rojas
et al., 2006). Prevention and treatment are crucial to
the child and family’s well-being.
The causes of childhood obesity and overweight
are complex, involving the environment (e.g.,
home and society), genetics, family attitudes and
beliefs, cultural practices, nutritional practices, and
Family Child Health Nursing 405
3921_Ch13_387-432 05/06/14 11:25 AM Page 405
family activities (Baughcum, Burklow, Deeks, Pow-
ers, & Whitaker, 1998; Bruss, Morris, & Dannison,
2003; Ritchie, Welk, Styne, Gerstein, & Crawford,
2005). Family beliefs, mediated by cultural and
family traditions, are thought to affect family eating
behaviors (Baughcum et al., 1998; Bruss et al.,
2003). Societal and environmental changes that in-
clude decreased physical activity, perceived threats
to safety resulting in children playing indoors
rather than outdoors, increased screen time, and
greater consumption of high-calorie fast foods in
the community and schools has contributed to the
rise in obesity around the world.
Research about obesity is also increasing, but
effective strategies to address the problem have re-
mained elusive. Because it is difficult to lose weight,
prevention of overweight—particularly in the pre-
school years, a time when children are prone to
become overweight or obese—is seen as one im-
portant approach (Wofford, 2008). A combined ap-
proach of education for families and children,
support for changes in policies, such as building
safe bike trails, offering better meals at schools, and
reducing fast food access while replacing access to
healthier foods will likely have the greatest influ-
ence on reducing overweight in families. Parental
involvement as role models for physical activity and
healthy eating has been found to be essential in
prevention of obesity in children (Floriani &
Kennedy, 2007; Wofford, 2008).
Supporting families in use of an authoritative
approach to parenting, helping them to develop
sensitive but clear parental expectations regarding
self-care and food and activity choices are important
nursing interventions (Luther, 2007). Specifically,
childhood overweight management in families
includes providing children with nutrient-dense
foods; reducing children’s access to high-calorie,
nutrient-poor beverages and food; avoiding exces-
sive restriction of food and use of food as a reward;
encouraging children to eat breakfast; finding ways
to make physical activity fun; reducing children’s
TV, computer, and video time; and teaching par-
ents to model healthful eating practices for children
(Hodges, 2003; Ritchie et al., 2005). The American
Medical Association (AMA) recommends encour-
aging families to eat meals at home, limit meals out-
side the home, and give children no sugar-sweetened
beverages; the AMA also specifies that children
should get 1 hour or more of physical activity per
day (AMA, 2007). Nurses can influence weight not
only by helping families consider their eating and
exercise activities, but also by contributing to com-
munity actions that will work in concert with family
health behavioral changes.
Child Maltreatment
Nurses recognize situations in which children are
in danger because of child maltreatment. In 2010,
an estimated 3.1 million cases of child abuse and
neglect occurred and approximately five child-
ren died each day from abuse or neglect (U.S.
Department of Health and Human Services, Ad-
ministration for Children and Families, 2011).
Children ages birth to 1 year had the highest rate
of victimization of maltreatment at 24.4 per 1,000
cases. Physical abuse is generally defined as a
non-accidental physical injury to the child and
can include striking, kicking, burning, or biting
the child by a parent, sibling, child care provider,
or other caregiver. Physical abuse represents
17.6% of child maltreatment. Child neglect is de-
fined as not providing for a child’s basic physical,
educational or emotional needs and represents
78.3% of child maltreatment (U.S. Department
of Health and Human Services, Administration
for Children and Families, 2011). In 2010, almost
9.2% of all cases of child maltreatment involved
sexual abuse, and psychological maltreatment
accounted for 8.1%. Psychological maltreatment
is defined as child exploitation (i.e., child prosti-
tution), threats (i.e., threat to kill child), and iso-
lation. Approximately 2% of the cases involved
medical neglect. Some children were victims of
more than one type of abuse. Children with dis-
abilities are especially vulnerable. Nearly 8% of
victims had a reported disability, a figure that is
thought to be underreported. Abuse can also lead
to permanent disabilities, ranging from physical
injury to lifelong mental illness. Also at higher
risk for maltreatment are children of unwanted
pregnancies, living in substance abuse homes, liv-
ing with a parent with a mental health disorder,
and with difficult temperaments. Nearly 80%
of perpetrators of maltreatment were parents, and
most victims know their perpetrators. More than
half of all reports of abuse came from profession-
als involved with the children and families,
including health care providers and teachers
(U.S. Department of Health and Human Serv-
ices, Administration for Children and Families,
Administration on Children, 2011).
406 Nursing Care of Families in Clinical Areas
3921_Ch13_387-432 05/06/14 11:25 AM Page 406
Child maltreatment represents a problem in
family behaviors that demands immediate assess-
ment and action/intervention. In most states,
nurses are mandatory reporters and are required by
law to report to authorities when they suspect that
a child is being maltreated. It is important for
nurses who work with children and families to un-
derstand their legal and ethical responsibilities.
The Child Welfare Information Gateway (2014)
provides specific information about mandatory
reporting laws per state.
Nurses screen families for domestic violence by
asking questions regarding the safety of the home
and the incidence of family violence within the
home. See Box 13-2 (Gedaly-Duff, Stoeger, &
Shelton, 2000) for pertinent questions regarding
family violence that affects families with children.
Inquiring about family violence can be uncomfort-
able for nurses and other health professions. Family
violence occurs across social, economic, and ethnic
groups. The standard of practice is to ask all fami-
lies these questions so that the stigma becomes
standardized. Families frequently will seek help if
given the opportunity to talk about their situations
(Hibbard, Desch, Committee on Child Abuse
Neglect, & Council on Children With Disabilities,
2007). By screening for family violence, nurses can
assess families and children for dangerous situa-
tions, teach safety, and make a referral as necessary.
Prevention is the preferred approach for interven-
ing with families for child maltreatment. Nurses
identify situations that might foster child maltreat-
ment and intervene accordingly. Risk factors thought
to contribute to abuse are categorized into four
domains: parent or caregiver factors, family factors,
child factors, and environmental factors. Parent
or caregiver factors include personality characteris-
tics (e.g., low self-esteem, depression, poor impulse
control), a history of abuse in the parent’s own
childhood, substance abuse, attitudes about child
behavior, inaccurate knowledge about child devel-
opment, inappropriate expectations of the child,
and younger maternal age. Family factors include
marital conflict, domestic violence, single parent-
hood, unemployment, financial stress, and social
isolation. Child factors include age, with younger
children and infants being the most vulnerable,
presence of disabilities or chronic illness, and diffi-
cult temperaments. Environmental factors include
poverty, unemployment, and social isolation. In
all cases it is important to remember that the pres-
ence of risk factors is not an indication that the
parents or family members are, in fact, abusive
(U.S. Department of Health and Human Services,
Administration on Children, Youth and Families,
2005). Rather, when the nurse identifies the pres-
ence of various stressors and risks, it may be appro-
priate to evaluate and implement interventions that
may decrease the potential for abuse.
Nurses should also keep in mind the following
protective factors against child abuse and neglect:
parental resilience, social connections, knowledge of
child development, concrete support in times of
need, increased social and emotional competence of
children, and non-acceptance of abuse by the com-
munity and larger society (Moxley, Squires, & Lind-
strom, 2012). Strategies thought to help families are
those that facilitate friendships and mutual support,
strengthen parenting by teaching and modeling ap-
propriate behavior with children, respond to family
crises, link families to services, facilitate children’s so-
cial and emotional development, and value support-
ing parents (Horton, 2003; Moxley et al., 2012). For
example, social support from peers and professionals
has been shown to be positively related to health pro-
motion efforts in adolescent mothers (Black & Ford-
Gilboe, 2004). The difference between discipline and
abuse may be unclear because of different cultural
Family Child Health Nursing 407
BOX 13-2
Family Violence Screening Questions
Right now, who is living at home with you and your
child?
■ Is everyone getting along well at home or is there a lot
of stress, arguing, or fighting?
■ Has anybody ever been hit or hurt, pushed, or shoved
in a fight or argument at your house?
■ Has anybody in the family been in trouble with the
police or in jail?
■ Is anybody worried that your children have been disci-
plined too harshly?
■ Is anybody worried that your children have been
touched inappropriately or sexually abused?
■ Is there anybody living with you or close to you who
drinks a lot or uses drugs?
■ Are there guns or knives or weapons at your house?
■ Has anything major (e.g., people dying, losing jobs, disas-
ters or accidents) happened recently in your family?
■ What is the best part and the worst part of life for you
right now?
3921_Ch13_387-432 05/06/14 11:25 AM Page 407
traditions, but nurses must be alert to helping fami-
lies learn appropriate discipline measures (Stein &
Perrin, 1998). Children’s early nurturing experiences
and attachment relationships with their caring adults
affect their future relationships and well-being.
Specific Adolescent Risks
Adolescents as a group are especially vulnerable to
high-risk behaviors that can lead to illness and death.
Data on the prevalence of risk behaviors among
adolescents is collected by the Youth Risk Behavior
Surveillance System (YRBS), using a national prob-
ability sample of 9th to 12th graders, state and local
school-based surveys, and a national household-
based survey (CDC, 2011). In 2010-2011 in the
United States, 21% of all deaths among persons age
10 to 24 years resulted from four causes: motor-
vehicle crashes (26%), other unintentional injuries
or accidents (17%), homicide (16%) and suicide
(13%) (CDC, 2011). Health behaviors that con-
tributed to unintentional injury or to violence were
the use of alcohol and other substances, nonuse of
seatbelts, and availability of weapons. Other health
behaviors that contributed to illness and death were
tobacco use, poor nutrition, sedentary lifestyle, and
sexual behaviors that led to pregnancies and sexually
transmitted infections.
The 2011 YRBS report revealed that adolescents
engaged in behaviors associated with significant mor-
bidity and mortality. Nationwide, 70.8% reported
drinking alcohol, with 38% reporting having alcohol
within 30 days of taking the survey (a decrease from
45% in 2007), 24.1% had ridden with a driver who
had been drinking alcohol, 8% had rarely or never
worn a seat belt, and 23.1% had used marijuana.
Twenty-six percent of all adolescents in school cur-
rently used tobacco. Thirty-three percent of high
school students had experienced sexual intercourse
within 3 months prior to the survey. Among students
who were sexually active, 60.2% reported using a
condom at their last intercourse (CDC, 2011).
Violence is a significant risk for morbidity and
mortality for adolescents. In 2010, the second and
third leading causes of death for young people
ages 15 to 34 were homicide and suicide (CDC,
2010). In 2010, there were 2,711 infant, child, and
teen firearm deaths. On average there were seven
such fatalities daily and 52 weekly (National
Association of School Psychologists, 2012. In
2011, 5% of high school students carried a gun
on school property, and 7% were threatened or
injured by a weapon (e.g., gun, knife, or club) on
school property (National Association of School
Psychologists, 2012). Child and youth access to
firearms is part of the problem. A significant
percentage of adults who have minor children liv-
ing in their homes report their firearms are not
safely stored (Johnson, Miller, Vriniotis, Azrael,
& Hemenway, 2006). Children’s reports often
contradict parental reports about their children’s
access to firearms, with children reporting know-
ing the location of firearms and handling firearms
when parents said they did not. This is true
whether or not parents lock firearms and discuss
firearm safety with their children (Baxley &
Miller, 2006; Grossman et al., 2005).
The American Academy of Pediatrics (2012)
takes a public health position to prevent firearm in-
juries by removal of guns from families’ homes and
communities, however it is crucial that education
in gun use also occur. In 2011, the Emergency
Nurses Association, one of the few nursing organ-
izations, made a public statement that safety for
children by removing firearms in the home is a cru-
cial step in decreasing injury and death from
firearms. Nurses should include screening for guns
in the home and incorporate a discussion and in-
formation about gun safety with parents. Specific
results from the 2011 National Youth Risk Behavior
Survey follow:
Many high school students are engaged in
priority health-risk behaviors associated with
the leading causes of death among persons
aged 10–24 years in the United States. During
the 30 days before the survey, 32.8% of high
school students nationwide had texted or
e-mailed while driving, 38.7% had drunk
alcohol, and 23.1% had used marijuana. During
the 12 months before the survey, 32.8% of
students had been in a physical fight, 20.1% had
ever been bullied on school property, and 7.8%
had attempted suicide. Many high school stu-
dents nationwide are engaged in sexual risk be-
haviors associated with unintended pregnancies
and STDs, including HIV infection. Nearly half
(47.4%) of students had ever had sexual inter-
course, 33.7% had had sexual intercourse during
the 3 months before the survey (i.e., currently
sexually active), and 15.3% had had sexual inter-
course with four or more people during their
life. Among currently sexually active students,
60.2% had used a condom during their last
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sexual intercourse. Results from the 2011
national YRBS also indicate many high school
students are engaged in behaviors associated
with the leading causes of death among adults
aged ≥25 years in the United States. During the
30 days before the survey, 18.1% of high school
students had smoked cigarettes and 7.7% had
used smokeless tobacco. (CDC, 2011, p.1)
Family nurses in school-based health clinics are
especially well placed to participate in health preven-
tion programs directed at high-risk behaviors leading
to sexually transmitted disease and early pregnancy,
depression, injuries, substance use, suicidal ideation,
and violence. In addition, nurses have a crucial role
in educating parents, especially those of adolescents
how to address safety and risk behaviors.
An alternate approach to risk assessment is to sup-
port what young people need to facilitate positive
development. The America’s Promise Alliance pro-
gram (2013) lists the assets believed to be protective
for children and predictive of positive outcomes and
behaviors: violence avoidance, thriving (i.e., having
a special talent or interest that gives them joy), good
school grades, and volunteering. The program’s five
“Promises,” or goals for positive outcomes, are
(1) presence of caring adults, (2) safe places and con-
structive use of time, (3) a healthy start, (4) effective
education, and (5) opportunities to make a differ-
ence. One large study demonstrated that the pres-
ence of four to five Promises resulted in positive
adolescent development outcomes. Still, the same
study found that only a minority of youth experi-
enced enough of the Promises that were related to
positive outcomes. Furthermore, non-Hispanic
white youth were much more likely to experience
the Promises than were Hispanic and African Amer-
ican youth (Scales et al., 2008). The primary goal in
2013 of the America’s Promise Alliance program is
to increase the nation’s high school graduation rates.
The Influence of Poverty
Socioeconomic factors, such as poverty, lack of edu-
cation, little or no health insurance, and immigrant
status, are strong risk factors related to poor health
(Hardy, 2002). There is evidence that behavioral
symptoms of child psychiatric disorders are associ-
ated with poverty and that those symptoms can be
reduced as the family moves out of poverty (Costello,
Compton, Keeler, & Angold, 2003). Programs that
provide families with employment, adequate income,
day care, and health insurance have been shown to
have positive effects on academic achievement, class-
room behavior, and aspirations (Huston et al., 2001).
Children from families from ethnic minority back-
grounds are more likely to live below the poverty line
(Annie E. Casey Foundation, 2007) and thus they are
at risk for health problems.
Families with limited financial resources and those
who do not have health insurance have more diffi-
culty with health promotion than families with in-
surance or other methods of payment. In the United
States in 2010, 22% of children (16 million) were
poor, meaning that they lived in households where
the income was below $22,350 for a family of two
adults and two children (National Center for Chil-
dren in Poverty, 2012). In the United States in 2010,
9% of all children (6.8 million) were uninsured.
Thirteen percent of children who lived in families
with incomes at or below 100% of the federal
poverty level were uninsured (National Center for
Children in Poverty, 2012). Minority families are
consistently found to be less likely to have health in-
surance than are white non-Hispanic families. Nearly
9% of children with special health care needs or
2 out of every 5 children with special health care
needs are uninsured for all or part of the year and of
those covered many do not have adequate insurance
coverage (Szilagyi, 2012). The federal government
has stepped up to decrease health disparities for all
children and especially children with special health
care needs by implementing the Children’s Health
Insurance Program (CHIP). These state-run pro-
grams are designed to ensure that all children have
health insurance. The criteria expanded health insur-
ance to low-income families with children who
would not qualify for state-funded health insurance
(e.g., MediCal or Oregon Health Plan).
The Affordable Care Act of 2010 maintained CHIP
funding and increased the percentage of federal
matching dollars from 50% to 65% to an average of
93% per state, maintained until 2015. Each state de-
signs state-funded CHIP programs, with 28 states
using a combination of expanded Medicaid services
with separate child health programs, 15 states using
only separate child health programs, and 7 states
only using Medicaid expansion plans. The differ-
ences in design determine whether all children are
entitled to CHIP benefits, or only those that qualify
for Medicaid. The cost of this program has been
debated, with many states concerned about the
increased cost based on enrollment. The cost of
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health care is actually reduced, however, when chil-
dren have a medical home and receive routine well-
child care. The number of children now getting
health care is notable, as Oregon and Washington
lead the nation in increasing the number of children
with health insurance by over 20% (Medicaid.gov,
2013). Although this program has had positive ef-
fects on the health of children, there are still 7.8 mil-
lion children uninsured, with 5.4 million of those
children living in poverty. Further, when investigat-
ing barriers to children enrolling in state and federal
programs, the most likely reason given by parents is
that if the parents cannot obtain insurance, they are
less likely to enroll their children. Although unin-
sured children pose a major risk to the health of any
nation, non-elderly adults are four times more likely
not to have insurance than children. In the United
States, 36 million parents are uninsured. New ini-
tiatives are being proposed to combine programs to
insure children and parents rather than just children
alone (Kenny & Dorn, 2009).
Strategies to Support Health
Promotion in Families With Children
Families are the major determinant of children’s
well-being. Nurses and other health professionals
collaborate with parents, and do not view parents
as secondary and apart from nurses (Bruns &
McCollum, 2002). Health promotion and illness
prevention can occur using a variety of strategies
across settings, including the following:
1. Writing or providing health information for
school or community newsletters, e-mail, or
online messaging.
2. Demonstrating and teaching health promo-
tion activities, such as games or physical activ-
ities that promote health.
3. Cultivating attributes of healthy families that
include accountability, self-reliance, informed
decision making, access to supportive social
networks, and nurturing relationships.
4. Encouraging family councils or family
nights that provide venues for communica-
tions among all the family members.
5. Providing anticipatory guidance about high-
risk periods in child and youth development.
For example, childproofing the home before
the infant begins to crawl or walk or provid-
ing assistance with appropriate limit setting
as an adolescent gets his driver’s license. The
use of a contract for teen driving has reduced
teen reports of risky behaviors such as driving
under the influence of alcohol or riding with
someone who has been drinking (Haggerty,
Fleming, Catalano, Harachi, & Abbott, 2006;
Novilla et al., 2006).
6. Providing connections with school and com-
munity services. For example, children learn
meanings, responses to, and values about
health through their interactions in their
school communities. Nurses can refer families
to community resources, such as the feder-
ally funded Head Start programs that serve
families of children who are economically
disadvantaged and children who have dis-
abilities (American Academy of Pediatrics,
1973). Head Start has increased high-school
graduation rates and lowered rates of
juvenile arrests and school dropout rates
(Gray & McCormick, 2005).
CARE OF CHILDREN WITH CHRONIC
ILLNESS AND THEIR FAMILIES
While most families raising children experience
acute illnesses and become familiar with managing
these crises, families do not anticipate that their
children may have a chronic illness. They are often
unprepared for the unknowns and uncertainties of
the course of the disease, the effect on their chil-
dren’s development and adulthood, or the effect on
each family member and family life.
Defining Chronic Illness in Families
With Sick Children
Families of children with chronic illness are diverse
and represent all racial and ethnic groups and in-
come levels. Chronic health problems, long-term
conditions, disability, and children with a special
health care need (CSHCN) are phrases used to
describe children with a health problem that can-
not be cured. These heterogeneous conditions
include, but are not limited to, the following:
■ Medical problems—allergies, asthma, diabetes,
congenital heart disease, joint problems, blood
disease, spina bifida
■ Disabilities related to developmental delay and
rare genetic syndromes—Down syndrome,
cerebral palsy, mental retardation, autism
410 Nursing Care of Families in Clinical Areas
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■ Health-related behavioral and educational
problems—attention-deficit hyperactivity
disorder, learning disability
■ Social-emotional conditions—depression and
anxiety
■ Consequences of unintended injuries or
acute illness—head trauma and paralysis.
Many children have more than one problem.
The phrase “children with special health care
needs” (CSHCN) is used for families whose children
“have or are at increased risk for a chronic physical,
developmental, behavioral, or emotional condition
and who also require health and related services of a
type or amount beyond that required by children
generally” (McPherson et al., 1998). According to the
2011–2012 National Survey of Children with Special
Health Care needs approximately 14.6 million be-
tween 0–17 years of age in the United States have a
special health care need (Data Resource Center for
Child and Adolescent Health, 2012). Of these special
needs children, 78.4% reported having one disorder
and 41.4% report having 2 or health conditions. The
most common health conditions are as follows:
■ Attention-deficit disorder (32.2%)
■ Asthma (35.3%)
■ Learning disability (27.2%)
■ Speech problem (15.6%)
■ Development disability (14.7)
■ Behavioral problem (13.6%)
■ Anxiety disorder (13.4%)
Of these children, 65% have complex health
care needs beyond a medication prescription. The
functional impact of these special health needs is
significant for the children and families. Approxi-
mately 92% of these children have at least one
functional deficit, 72% have two functional deficits
and 46% have 4 or more functional deficits.
All families fare better when they have knowl-
edge of the trajectory and management of the spe-
cific disease or chronic illness. The trajectory of the
disease or condition, according to Rolland’s model
of chronic illness, includes the following categories:
1. Sudden or gradual onset: Sudden onset of a
chronic illness can be from an acute illness,
such as meningitis or an acute accident,
whereas gradual onset can be from genetic
conditions such as muscular dystrophy.
2. Prognosis of chronicity, relapse, or death:
Chronic conditions include cystic fibrosis,
learning disabilities, or cerebral palsy;
relapsing conditions include arthritis,
certain mental health disorders such as
depression, and asthma; and death or fatal
disorders include certain types of cancer or
genetic disorders.
3. A stable or degenerative course over time: A
stable course over time includes disorders
such as well-managed asthma, whereas a
degenerative condition includes certain
types of cancer, and multiple sclerosis.
4. The degree of incapacitation and amount of
uncertainty: The degree of incapacitation
varies by illness and within illnesses, such as
cerebral palsy ranging from mild and non-
incapacitating to severely incapacitating.
The amount of uncertainty also varies, such
that children diagnosed with certain types
of cancer can receive effective treatment, or
follow a course of uncertainty and instability
over many years.
These categories are helpful to review with
families as the specifics of disease management
(Rolland, 2005). Nurses and other health profes-
sionals tend to reteach the disease and medicine
management when it is really the social-emotional
and behavioral responses that are troubling fami-
lies. It may be the degree of unpredictability and
lack of role models that interfere with children
and their families’ abilities to cope, rather than the
degree of severity of the illness or disease man-
agement (Rodrigues & Patterson, 2007). If nurses
spend time with the family carefully assessing
their knowledge versus social and emotional
responses to their child’s illness, the plan of care
will be more appropriate and effective.
Families with children who have chronic illnesses
vary greatly in their needs, ranging from families
who are rarely affected by their children’s condition,
such as mild asthma, to those who are significantly
affected, such as children who are ventilator depend-
ent. But to varying degrees, all families of children
with chronic conditions bear consequences of their
children’s conditions. A noncategorical approach, or
the understanding by health care providers and par-
ents that care across different diagnoses has similar
needs and qualities, directs attention to the conse-
quences that several different chronic conditions
have on the children, their families, their communi-
ties, and health care systems (Perrin et al., 1993;
Stein, Bauman, Westbrook, Coupey, & Ireys, 1993).
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The intent is to manage the symptoms so that the
children and families can maintain their well-being
and move toward each member’s and the family’s
goals. The 2001 CSHCN survey provided questions
to help nurses and families understand the impact of
chronic illness on the family. To gain a family per-
spective, nurses can ask similar questions as the 2001
CSHCN survey (U.S. Department of Health and
Human Services et al., 2008):
■ Does the condition limit the child’s ability to
dress and learn self-care?
■ Does the condition interfere with the child’s
daily activities, such as playing and going to
school?
■ Does the condition require special assistance or
technology and/or medication management?
■ Does the condition cause family members to
cut back or stop working?
■ Can the family access and get a referral for
special services for the child, as well as family
support services?
■ Is health care insurance adequate for the
child and other family members?
■ In the case of adolescence, has the young
person’s health care begun to be transferred
to adult providers?
Parenting a Child With Chronic Illness
Parenting is the nurturance of children to become
healthy, responsible, and creative adults. The in-
terdependencies among child, parents, and the
whole family within their community are like a set
of nesting dolls. Children with chronic illnesses are
cared for by their families, who share a household
and family history, are nested in communities, and
use local and national health care systems. The
complex, changing interactions among child, family,
and community provide the context of parenting a
child with chronic illness into adulthood. Tasks
specific to health care are integrated with nurtu-
rance during their caregiving. Caregiving burden
involves both the amount of time spent and the
degree of difficulty in caregiving activities; how-
ever, parents have objected to the word “burden”
to describe the care they willingly give to their chil-
dren (Wells et al., 2002). Sullivan-Bolyai, Sadler,
Knafl, and Gilliss (2003) described the parenting
responsibilities as taking care of the illness, nurtur-
ing and caring for their child, maintaining family
life, and taking care of oneself.
Taking Care of the Illness
Direct care of their children’s illness involves the
time, knowledge, and skills to do technical and non-
technical management, while simultaneously caring
for the child’s developmental and emotional needs
(Moskowitz et al., 2007). Technical care and time in-
volves doing procedures and monitoring for changes
in their children’s illness. This includes specialized
care, such as administering medications and cleaning
indwelling tubes. It accounts for crisis care (e.g.,
unanticipated seizure, elevated temperature), which
may involve complex first aid or emergent trans-
portation to the hospital. Nontechnical care is the
time and skills needed for feeding, bathing, dressing,
grooming, bowel and bladder care, transferring from
the bed to a chair, and toileting, along with the nec-
essary extra laundry and house cleaning.
Complex illness care, such as suctioning tra-
cheotomy tubes or diet and insulin regulation,
sometimes frightens relatives (e.g., grandparents)
who may normally help with child care (Nelson,
2002). Finding qualified caregivers that parents
trust is more difficult than finding care for healthy
children (Macdonald & Callery, 2008). Parents cut
back or quit work in order to provide care (U.S.
Department of Health and Human Services et al.,
2008) or decide against taking a new job if the
health insurance benefits will not cover their chil-
dren’s health care needs.
Parents also coordinate resources for their chil-
dren with special health care needs. Illness needs in-
volve clinic visits, specialized therapy, community
pharmacy stocking medications, and medical equip-
ment delivered to the home. Children with special
health care needs (CSHCN) also need wellness
care. The American Academy of Pediatrics (AAP)
recommends a “medical home” in pediatric offices
in order to provide disease prevention through im-
munizations, promote wellness through anticipa-
tory guidance, address illness questions, and ideally
serve as a coordination center for families of
CSHCN (Sadof & Nazarian, 2007; Van Cleave,
Heisler, Devries, Joiner, & Davis, 2007). Not all
pediatrician offices have the resources or training to
provide coordination of care and specialized con-
sideration of well-child care for children with spe-
cial health care needs.
Besides health care, parents advocate for special
educational services. The Individuals with Disabili-
ties Education Act (IDEA), passed in 1975 and re-
newed by the Disabilities Educational Improvement
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Act of 2004 (U.S. Department of Education, 2004),
requires free public education to all eligible children.
For children with disabilities, this involves an indi-
vidual family service plan (IFSP) for children birth
to 5 years, and an individual education program
(IEP) for children 5 to 21 years. The 504 Plans man-
dated from the Rehabilitation Act of 1973 can also
be used for children with health impairments to pro-
vide appropriate accommodations and adaptations
to curriculum, daily instruction and test taking, and
standardized local and state level testing. Local
school system budgets are challenged to meet all the
educational and special needs of their students.
Some families may move to another school district
if a school has reduced special needs services. Fam-
ilies living in rural areas seem to struggle the most
with finding appropriate and available special edu-
cational services for their children. Families add time
to an already stretched schedule to advocate for their
child’s educational needs.
Nurturing the Child
The care of a child with chronic illness does not
exclude nurturing the child as the foundation to care.
Parents often feel overwhelmed with the tasks in-
volved with illness care and management, and may
need support and encouragement to maintain opti-
mum nurturing. The common aspects of positive
nurturing—including regular touch and rocking; en-
couragement of social connections, such as mutual
eye contact; shared positive experiences; shared dis-
coveries; shared communication; and response to
physical, emotional, and spiritual needs—can be
pushed aside as medical treatments, procedures, and
appointments take precedence. While other parents
are enjoying play dates, parents of children with
chronic illnesses are often transporting their child to
appointments with professionals, or providing med-
ical care and therapies at home. Nurses can be key in
helping parents reprioritize nurturing their child by
explaining the importance of nurturing to health and
optimum brain development, and by modeling nur-
turing actions while providing medical care. Nurses
can also help to alleviate parents’ guilt of wanting to
nurture and play with their child rather than provide
medical care, and help parents delegate medical care
to professionals when possible.
Maintaining Family Life
Nurturing the family as a whole and keeping each
member moving toward family and individual
goals are as important as illness management
(Sullivan-Bolyai, Sadler, Knafl, & Gilliss, 2003).
Parents, as the leaders, help the family find mean-
ing in the situation and find ways to include care-
giving into daily life. The meaning of the child’s
illness and the family’s identity can change over
time. Families may define themselves by the ill-
ness, such as a “diabetic family.” Illness patterns
that are chaotic challenge efforts to create family
life. For example, children with attention-deficit
hyperactivity disorder (ADHD) can exhibit poor
impulse control, learning difficulties, and hyper-
activity. Families are constantly adjusting to their
child’s behavior. As children with ADHD mature
and learn ways to be successful with the help of
teachers and health professionals (National Insti-
tute of Mental Health, 2006), the family identity
may become “a family” with a child with special
health care needs rather than an “ADHD family.”
Parents maintain the household and financial
security (Sullivan-Bolyai et al., 2003). Mothers tend
to do the immediate household activities and care
of the children. Fathers continue to focus on in-
strumental activities, such as financial security and
home repairs. Both parents grieve and worry about
their children’s future and struggle balancing work
and time with their family (Chesler & Parry, 2001;
Feudtner, 2002). Single-parent households are
faced with the demands of caregiving, household
management, and maintaining financial security
(Ganong, Doty, & Gayer, 2003).
A common concern for parents of children with
special health care needs is the healthy development
and care of siblings. Parents want the siblings not to
be forgotten or overshadowed by the child with the
chronic illness (Hallstrom & Elander, 2007). Siblings
may assume the responsibilities of the parent, such
as the 5-year-old who shares a bedroom with the sick
sibling alerting his parents that his baby sister needs
suctioning (Coffey, 2006). Siblings often try to do
well in school to gain parent approval and alleviate
parent concern for them because they see their par-
ents working so hard to care for their ill sibling
(Hutson & Alter, 2007). They take pride in being
able to help their sibling, simultaneously complaining
of doing more than their share of chores and noticing
differential treatment from their parents and other
relatives. Sibling research has mixed findings that
show increased risks for behavior and academic prob-
lems on one hand, with improved empathy and in-
dependence skills on the other (Sharpe & Rossiter,
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2002). Sibling adjustment improved when parents
provided problem-solving skills, established open
communication about current and future concerns,
and supported resiliency characteristics, including
support outside the home, establishing positive
experiences and interests, and supporting positive
meaning to challenging experiences (Giallo &
Gavidia-Payne, 2006).
A strong husband-wife relationship is important
in any family, but creating opportunities for being a
couple is even more challenging for families with
children with special health care needs. A ritual such
as “date night” fosters closeness and provides an op-
portunity for open communication and problem
solving without the distractions of parenting (Imber-
Black, 2005). Another challenge is deciding roles and
responsibilities between parents to avoid caregiver
burnout. Some parents agree to divide activities,
while some trade, so that each can learn the other’s
skills. Agreement and support of each other’s parent-
ing is the anchor for the family. Also, accepting the
need for time away from parenting for both parents
is important. Finding safe and appropriate respite
care for families with CSHCN is a barrier to partners
and marital couples, especially in rural areas. Coor-
dinated care between health clinics, specialty clinics,
educational services, and social services can increase
the resources for parents and increase the chances of
finding appropriate respite care.
Parents also have to manage social stigma, most
common for families of children who have visible
disabilities, such as limb deformities or morbid obe-
sity; are technology dependent; have developmental/
behavioral disabilities; or have a fear-based disease,
such as HIV infection. Managing stigma means
finding safe environments where families can relax
and participate, such as Special Olympics or organi-
zations designed to bring similar families together
(e.g., National Autism Association). Without a feeling
of trust and safety, families are likely to limit social
activities or split the family so that the child with the
disability is cared for while other family members par-
ticipate in social events (Rehm & Bradley, 2005a;
Sandelowski & Barroso, 2003). A major risk for fam-
ilies with CSHCN is social isolation and lack of social
support (Wang & Barnard, 2004).
Parental Self-care
It is difficult for parents to take care of themselves
when they are balancing illness care and the ongoing
demands of family life (Hallstrom & Elander, 2007;
Sullivan-Bolyai et al., 2003). Mothers and fathers,
each in their own way, grieve the lost dream of a
healthy child. The busy-ness of daily care can dis-
tract parents from thinking that their child is not
normal. The differences, however, become more
evident when the condition worsens or at family
events, making distraction a more difficult coping
strategy to use. For example, the “first day of school”
is celebrated when boarding the school bus, but
using the wheelchair lift or watching other children
board the regular bus while a child with special
health care needs waits for the special education bus
makes the child’s difference visible. Validating their
sadness is a nursing action that gives parents and
children the opportunity to grieve what might have
been and celebrate what is and has been accom-
plished. Their sadness, called “chronic sorrow,” is a
normal grief response (Gordan, 2009). Evidence-
based nursing intervention strategies for families
experiencing chronic sorrow (Gordan, 2009) are
divided into two areas: (1) internal management
methods and (2) external management methods. In-
ternal management builds on interventions initiated
by an individual such as: reading literature about
their child’s or sibling’s condition, engaging in a per-
sonal stress reduction activity, or joining a support
group. Nurses can provide these individuals local,
regional, and national resources; Internet resources
that are vetted as evidenced-based; or other credible
resources. External management strategies are those
provided by health care professionals, such as: coun-
seling, medications for insomnia or anxiety, pastoral
or spiritual care, and referrals to organization or
resources to assist with financial concerns created by
their child’s health condition.
Conditions that were fatal in the past (e.g., pre-
mature birth, leukemia, cystic fibrosis) are now con-
sidered chronic, and are now managed in outpatient
clinics and in the home (Eiser, 1994). Parents may
struggle and not be able to care for their child, es-
pecially if needs are complex or behavior is so diffi-
cult that injury to the child or other family members
is a risk. These parents may seek out-of-home place-
ment, but feel guilty about it. They may see them-
selves as being a “bad parent” (Nelson, 2002; Wang
& Barnard, 2004). Finding appropriate community
resources for specialized care is difficult. Respite
services and home care are fragmented. Parents
move between hope and despair, and are at risk for
caregiver burnout and depression if appropriate sup-
port is not available (Wong & Heriot, 2008). Nurses
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have a key role in assessing the family’s ability to
maintain care, the need for increased support or
home care, and the need for out-of-home placement
when needed.
“Living worried” was found to be part of the day-
to-day parenting of children with chronic illness
(Coffey, 2006). Parents worried about their judg-
ment. When should they call the doctor or go to the
emergency department? They worried about their
family. Did their in-laws blame their side of the fam-
ily for the illness (Seligman & Darling, 1997)? They
worried that the neighbors would report them for
child abuse, as their toddler screamed, “Don’t do it,
Mommy . . . please don’t hurt me anymore,” during
an insulin injection. They worried their child was
parenting them, after saying “It’s alright Mommy,
don’t be sad. It doesn’t hurt too bad.” Parents con-
tinue to worry even after the child transitioned from
home to an adult independent living situation, with
concerns about financial stability, exploitation of the
adult child by others, and general happiness (Coffey,
2006). Nurses can help families to decrease their
worry by connecting parents to support groups to
discuss their worries. Connecting a family with an-
other similarly situated family is an important nurs-
ing intervention (Gallo & Knafl, 1998).
Normalization and Family Management
Styles in Childhood Chronic Illness
Families are expected to take their children home,
master complex treatments, and do it in such a way
as to not dominate the child’s life, but to integrate
the care into daily family life (Knafl, Deatrick, &
Kirby, 2001). Interestingly, nurses use the language
of sickness or disability, such as “families of chil-
dren with chronic illness” and “families of children
with special health care needs.” In contrast, families
use the phrase, “my child is normal except for . . .
[fill in the condition].” Families tend to focus on
the entire child, and work continuously to normal-
ize their child, whereas nurses continue to focus on
the illness. An important stage for families, after
the crisis of a chronic illness diagnosis, is to act to
normalize their situation. The characteristics of
normalization are as follows:
1. Acknowledging the condition and its potential
to threaten family life
2. Adapting a normalcy lens for defining child
and family
3. Engaging in parenting behaviors and family
routines that are consistent with normalcy
4. Developing management of the condition
that is consistent with normalcy (e.g., sched-
ule preschool for afternoon session so that
physical therapy and medications can be
done in the morning)
5. Interacting with others based on view of the
child and family as normal (Knafl et al.,
2001; Knafl, Deatrick & Havill, 2012)
Striving for normalcy is not the same as denial.
Parents in denial refuse to adjust schedules to meet
the needs of their child’s health needs in hopes of
the child being viewed as normal by others,
whereas parents who strive for normalcy alter
schedules to allow their child to participate in as
many normal activities as possible.
Families are stressed but not all are adversely
affected and some report being stronger from the
experience of having a child with a chronic illness
(Hayes, 1997; McClellan & Cohen, 2007; Miles,
2003; Mussatto, 2006; Rodrigues & Patterson,
2007). Nurses knowledgeable about disease, illness,
and family interactions can assess the complexity of
a family’s situation and adaptation to the chronic ill-
ness over time. Nurses can help families benefit from
identifying individual and group family strengths
and thinking about their goals as individuals and as
a family (Tapp, 2000). Other nursing interventions
to help normalize include matching support to the
family’s developmental stage and addressing areas
assessed for individual care planning. Challenges of
families whose children have disabilities and chronic
conditions are listed in Table 13-4.
CONSENT IN FAMILY CHILD
HEALTH NURSING
Families with children experiencing acute or chronic
illness or injury may be asked to make difficult deci-
sions regarding health care. In most instances, when
young children are involved, health care providers
collaborate with parents to obtain informed consent,
except in emergency situations when parents are ab-
sent. As children grow and develop, it is important
for them to take on more responsibility as primary
guardians of personal health and decision making
(American Academy of Pediatrics, 2007; American
Academy of Pediatrics Committee on Bioethics,
Family Child Health Nursing 415
3921_Ch13_387-432 05/06/14 11:25 AM Page 415
416 Nursing Care of Families in Clinical Areas
Table 13-4 Stages, Tasks, and Situational Needs of Families of Children With Disabilities
and Chronic Conditions
Stages Tasks Situational Needs that Alter Transitions
1. Beginning family:
Married couple without
children.
2. Early childbearing:
First birth, up to 36 months.
3. Family with preschool
children:
First child developmental
age 3–5 years.
4. Family with school-
age children:
Oldest child developmental
age 6–13 years.
5. Family with adolescents:
Oldest child developmental
age 13 years until leaves
home.
6. Launching center family:
First through last child
to leave home.
a. Unprepared for birth of children with
disabilities; prenatal testing or visible
anomalies at birth begins process.
b. In the United States, parents usually want
to know their infants’ diagnosis as early as
possible.
a. Learn the meaning of infants’ behavior,
symptoms, and treatments.
b. Hampered nurturing and parenting, if chil-
dren are not able to respond to parents’
efforts to interact with them (e.g., not smiling
or returning sounds in response to parental
cooing).
c. Search for adequate health care.
d. Establish early intervention programs
(speech and physical therapist, specially
trained teachers).
a. Formal education of disabled children starts
at birth with early intervention programs.
Families may not find adequate programs
even into preschool years.
b. Failure to achieve developmental milestones
(toilet training, self-feeding, language) signals
chronic sorrow.
c. Families try to establish routines for
themselves and their children.
a. Move children from family care to community
care requires creating new routines and
relationships.
b. Explain to school officials and others the
needs of the children.
c. Negotiate appropriate school services and
curriculum.
d. Behavioral problems may isolate families.
a. Continued dependency may mean children
never achieve leaving home.
b. Family examines how to continue family life
with increasing physical growth but ongoing
dependence of children.
c. High-risk behavior related to sexual activity
and drugs.
a. Financial costs do not decrease because
children still require dependent-type care.
a. Establish mutually satisfying
relationship.
b. Relate to kin network.
c. Family planning.
a. Integrate new baby into family.
b. Reconcile conflicting needs of
various family members.
c. Parental role development.
d. Accommodate to marital couple
changes.
e. Expand relationships with
extended family, adding grand-
parent and aunt/uncle roles.
a. Foster development of children.
b. Parental privacy.
c. Increased competence of child.
d. Socializing children.
e. Maintenance of couple
relationship.
a. Letting children go.
b. Parental needs balanced with
children’s needs.
c. Promoting school achievement.
d. Prepare for high-risk behavior
related to drugs and sexual
experimentation.
a. Loosening family ties.
b. Couple relationship.
c. Parent-teen communication.
d. Maintenance of family moral
and ethical standards.
e. Promote safe sexual
development.
a. Promote independence of
children while maintaining
relationship.
b. Couple relationship, build new
life together.
c. Midlife developmental crisis for
adults.
3921_Ch13_387-432 05/06/14 11:25 AM Page 416
Family Child Health Nursing 417
Table 13-4 Stages, Tasks, and Situational Needs of Families of Children With Disabilities
and Chronic Conditions—cont’d
Stages Tasks Situational Needs that Alter Transitions
7. Families in middle years:
Empty nest to retirement.
8. Retirement to old age:
Retirement to death
of both parents.
a. Redefine relationships with grown children
and child with special health care needs.
a. Arrangements for children with special health
care needs.
a. Redefine activity and goals.
b. Provide healthy environment.
c. Meaningful relationships with
aging parents.
d. Strengthen couple relationship.
a. Deal with losses.
b. Living place may change.
c. Role changes.
d. Adjust to less income.
e. Chronic illness.
f. Mate loss.
g. Aware of death.
h. Life review.
1995). Some family members and health care
providers may feel uncomfortable with the inclusion
of children in health care decision making. Some au-
thorities believe that children may not make rational
decisions, and yet adults are not held to the same
standard of being rational when they make personal
health care decisions (Zawistowski & Frader, 2003).
Each child’s decision-making capacities should be as-
sessed and given serious consideration using Piaget’s
cognitive developmental stages as a guide (American
Academy of Pediatrics, 2007; American Academy of
Pediatrics Committee on Bioethics, 1995).
The wishes and concerns of children should be
taken into account during decision making and the
assent of children undergoing treatment and proce-
dures should be solicited. Even when the child’s de-
sires cannot be met, the discussion of the situation
with the child may help to build child-health
provider trust. Regardless of the outcome of any de-
cision, it should be a dialogue, versus a “top-down”
conversation, with honest and developmentally ap-
propriate answers provided to the child (American
Academy of Pediatrics, 2007; American Academy of
Pediatrics Committee on Bioethics, 1995).
Laws regarding informed consent of minors
vary from state to state. It is important that health
care providers be knowledgeable of individual state
statues. In Virginia, for example, Abraham’s Law
resulted from a case where an adolescent refused to
comply with physician-recommended treatment
(Starchild Abraham Cherrix v. Commonwealth of Vir-
ginia, for the County of Accomack, 2006). This
2007 law allows minors 14 years of age or older to
refuse medical treatment for a life-threatening con-
dition. Even with this law, most adolescents make
these decisions in collaboration with parents and
health care professionals when able.
Some states consider some minors “emanci-
pated,” and give these individuals the authority to
make personal health care decisions. The age of
minors is decided by each individual state, and
varies depending on the decision being considered.
For example, whereas consuming alcohol is limited
to those 21 years and older, most states allow for
specific medical decisions to be made by individuals
over the age of 18 years. These minors may be self-
supporting, live outside of the parental home, be
married, pregnant, a parent, in the military, or de-
clared emancipated by the courts. Some states also
have statutes related to “mature minors.” These
persons are not emancipated but still have the au-
thority to make health care decisions in certain sit-
uations, such as addiction, pregnancy, and sexually
transmitted disease care (American Academy of Pe-
diatrics, 2007; American Academy of Pediatrics
Committee on Bioethics, 1995).
Source: Gedaly-Duff, V., Stoeger, S., & Shelton, K. (2000). Working with families. In R. E. Nickel & L. W. Desch (Eds.),
The physician's guide to caring for children with disabilities and chronic conditions (1st ed., pp. 31–76).
Baltimore, MD: Paul H. Brookes.
3921_Ch13_387-432 05/06/14 11:25 AM Page 417
On occasion, the wishes of children, families,
and health care providers may differ. It is assumed
that all parties will act in the best interest of the
child, but best interests are in the eye of the be-
holder when it comes down to personally held val-
ues, such as “what makes a life worth living” (Kon,
2006). Although it is uncommon for parents to be
overruled, there are circumstances where the courts
will invoke the Child Abuse Prevention and Treat-
ment Act, which gives the state’s interest in pro-
tecting minors greater weight than the rights of
parents in decision making (Holder, 1983; Kon,
2006; U.S. Code of Federal Regulations, 2006). In
a 2006 case, a mother was charged with second-
degree kidnapping when she smuggled her child
out of a children’s hospital to explore alternative
treatments. In situations such as these, health care
providers should respect the fact that some patients
may need time to understand the situation or come
to terms with concerns regarding proposed care
(American Academy of Pediatrics, 2007; American
Academy of Pediatrics Committee on Bioethics,
1995). Legal intervention should be the last resort,
and should only occur when there is a substantial
risk to the child, as state intervention can cause se-
rious harm itself (Ostrom, 2006).
CARE OF CHILDREN AND FAMILIES
IN THE HOSPITAL
Another issue that family nurses experience when
caring for families with children is the admission of
a child to the hospital. Hospital admission is a
stressful event for families. Nurses and health care
providers have the opportunity to take this crisis sit-
uation and make it the best it can be for the child
and family by decreasing stressors whenever possi-
ble. Applying the principles of partnering, setting
mutual goals with the family, enhancing family con-
nectedness to the child, valuing the family’s areas of
expertise, and assisting the family to understand
health care processes and procedures are all ways to
help alleviate some of the stress of a hospital stay
(Curley & Meyer, 2001). Family and child atten-
dance at interdisciplinary team rounds is an ideal
place to set mutual goals, and such rounds have
been shown to increase patient and family satisfac-
tion. In fact, positive feelings from the family can
improve health outcomes. For example, including
family as valued team members has been shown to
decrease intensive care unit length of stay of ill chil-
dren (Dutton et al., 2003; Vazirani, Hays, Shapiro,
& Cowan, 2005). Latta, Dick, Parry, and Tamura
(2008) identified communication as the most im-
portant aspect of rounds for families. Family mem-
bers expressed a need to be included in rounds and
found comfort in the fact that they were respected
members of the team with an important perspective
to share. Family-centered rounds hold a potential
to create a patient-centered environment, enhance
medical and nursing education, and improve patient
outcomes (Cypress, 2012).
Nurses often take on the role of coordinating and
maintaining communication with family members
throughout a hospitalization. Identifying one or two
point people to provide communication to the fam-
ily helps build trust and decreases the risk for com-
munication errors and related conflict. It opens and
strengthens communication, builds trust, and lessens
anxiety if a consistent, limited number of health care
providers are assigned to care for the child and fam-
ily, and maintain regular communication with family
members (Mullen & Pate, 2006).
Referring to family members as “visitors” dimin-
ishes the significance of the family relationship (Slota,
Shearn, Potersnak, & Haas, 2003) and may even be
perceived as insulting; it is the health care providers
who are the “visitors” or temporary caregivers for the
hospitalized child. Ensuring that “family” is broadly
defined can make available a wide base of support
from loved ones. Close friends and family members
are seen as sources of security for children, and ex-
tended family members can also provide parents or
guardians time for self-care and opportunities to ad-
dress work and home responsibilities. The family,
rather than hospital administrators, should determine
individuals allowed to be part of the care of the child.
418 Nursing Care of Families in Clinical Areas
3921_Ch13_387-432 05/06/14 11:25 AM Page 418
Health care providers, especially those working
with critically ill children, need to be aware that
parents may have increased stress due to the sever-
ity of illness their child is experiencing and about
their ability to parent and serve as the child’s care-
taker and protector during hospitalization. This
may be especially true if health care providers do
not communicate with family members and if they
take over traditional activities the parents are used
to performing. Family members may feel uncom-
fortable with this ambiguity, as they face uncertain-
ties about who performs which roles and tasks
(Boss & Greenberg, 1984). Health care providers
can allay much of this stress by assisting the family
to maintain parenting and caretaking as much as
possible during the child’s stay. Nurses can assist
families to know “how to be” at the bedside with
unfamiliar hospital equipment, unit routines, and
limitations to activity. Families need to be oriented
to the child’s room on admission and all potentially
unfamiliar sights and sounds described. For in-
stance, family members unfamiliar with alarms may
mistake one that signifies the completion of a med-
ication for something more life threatening (Board
& Ryan-Wenger, 2003). Nurses caring for patients
and their families should anticipate issues such as
the one just described. Orientation can provide a
time for education and encouragement to be an ac-
tive part of the child’s care (Mullen & Pate, 2006).
Nurses should acknowledge parents’ expertise in
care and monitoring, especially for children using
technology at home. Parents should also be given
the opportunity to take a break from care if they
need that break. On admission, nurses should also
assess the child’s usual routine and follow it as
closely as possible (Mullen, 2008).
The needs of siblings should also be addressed
during hospitalization. Younger siblings have vivid
imaginations and may believe that they caused a
brother or sister to become ill or injured, or that
the hospitalized child is at risk of dying. Nurses are
equipped to provide parents with information,
guidance, and reassurance about the appropriate-
ness of sibling visitation for individual situations
and to support these visits with appropriate prepa-
ration and support that is developmentally appro-
priate. Child life therapists may be available to
prepare siblings for visits to the hospital and assess
their readiness to visit (Mullen & Pate, 2006). In a
study of critically ill children, it was found that best
friends had some of the same concerns and needs
as siblings (Lewandowski & Frosch, 2003). Screen-
ing siblings and young friends for contagious ill-
nesses before visits can theoretically prevent the
spread to hospitalized patients and families. There
is no evidence, however, to support that sibling vis-
its increase infection rates, even in the neonatal
population (Moore, Coker, DuBuisson, Swett, &
Edwards, 2003). Rather, hospital-acquired and en-
dogenous infections pose a greater risk to the hos-
pitalized child (Rozdilsky, 2005). Siblings do
provide support to the hospitalized family member,
and visits by siblings help to reduce anxiety about
being separated from a family member during
times of illness and stress.
Avoiding family separation from the hospitalized
child is a priority. Separation increases stress for
children and families and does not encourage a part-
nership philosophy. The Society of Pediatric Nurses
and the American Nurses Association (Lewandowski
& Tesler, 2003) support 24-hour parental access to
hospitalized children. This access includes giving
families the option to remain with their children
during procedures, treatments, and resuscitation at-
tempts, including in the emergency department
(American Academy of Pediatrics Committee on Pe-
diatric Emergency & American College of Emer-
gency Physicians Pediatric Emergency Medicine,
2006; American Association of Critical Care Nurses,
2010; Emergency Nurses Association, 2010). Fam-
ilies benefit from presence because it removes doubt
about the child’s condition, and they can rest assured
that “everything” was done for the child. In the
event of death, families may be comforted by the fact
that the child did not die alone with strangers; the
togetherness may foster a sense of closure (Bauch-
ner, Waring, & Vinci, 1991; Halm, 2005; Man-
gurten et al., 2006). Nurses can assist families by
supporting the decision to be present or not, assess-
ing family reactions as needed, answering questions,
helping family members to find “a place” in the
room, providing instructions of what they can and
cannot do, contacting spiritual support as requested,
and providing comfort items such as tissues, bever-
ages, and seating. See Box 13-3, describing a family’s
experience during their child’s resuscitation.
Transitions during a hospital stay can become
added stressors for families. For example, those
who have been accustomed to one-to-one nursing
care for a child in an intensive care unit (ICU) may
find it stressful when transferred to an acute care
pediatric unit where the nurses have more patients
Family Child Health Nursing 419
3921_Ch13_387-432 05/06/14 11:25 AM Page 419
420 Nursing Care of Families in Clinical Areas
BOX 13-3
Research Brief: Family Experiences During Resuscitation at a Children’s Hospital Emergency
Department
Introduction: Family presence during cardiopulmonary
resuscitation has been recommended by national profes-
sional organizations, which include the American Associa-
tion of Critical Care Nurses, the Emergency Nurses
Association, and the American Academy of Pediatrics.
Purpose of Study: In an effort to improve the care of
families during resuscitation events, the authors of this
study examined the experiences of family members
whose children underwent resuscitation and their health
and mental health following the episode.
Methodology: Ten family members participated in
a 1-hour audiotaped interview in this descriptive, retro-
spective study. Data collection included both quantita-
tive and qualitative instruments, which contained
previously validated and investigator-developed items.
Seven family members were present during resuscita-
tion and three were not.
Results: Analysis of interview data revealed that families felt
that: (a) they had the right to be present during resuscita-
tion; (b) their child wanted them present during resuscita-
tion and that they were sources of strength for the child;
(c) they were reassured by seeing that all possible options
to help their child were exhausted; and (d) a facilitator for
information-giving would be helpful during the event, as no
one was prepared to face resuscitation.
Nursing Implications: Whether present or not, all family
members in this study expressed the importance
of the option to be present during resuscitation. There
was no indication of post-traumatic stress to family
members following the event.
Source: McGahey-Oakland, P. R., Lieder, H. S., Young, A., & Jefferson, L. S. (2007). Family experiences during resuscitation
at a children’s hospital emergency department. Journal of Pediatric Health Care, 21(4), 217–225.
although other family members have health care issues
as well. The focus of this case study is his health and the
health of his family. See the genogram and environmental
ecomap of the Comantan family in Figures 13-1 and 13-2.
Setting:
Carl Comantan is a 9-year-old boy who lives with his family
in a wood-frame house in a coastal, rural area of the north-
west region of the Alaska. He has chronic respiratory ill-
nesses and has been diagnosed by his physician as having
asthma.
Family Members:
Carl’s ethnicity is Alaskan Native, or Inuit. Many people call
these people Eskimos. Their nationality is American, as they
were all born in the United States of America. His father
and mother, and maternal and paternal grandfathers and
grandmothers, are also Alaskan Native. His maternal grand-
father and grandmother both passed away several years
ago from pneumonia. The remaining family members have
light brown skin and dark brown or black hair. The family
speaks English and the elders also speak their native lan-
guage, Inuktitut.
Carl’s family consists of his mother, Carine, age 32; his
father, Big Frank, age 33; and his two brothers, Sam,
age 7, and little Frankie, age 21/2. Carine is approximately
4 months pregnant. Big Frank’s sister, Leena, age 30, helps
with child care. Grandfather Harry and Grandmother Relah
are very involved with their children and grandchildren.
to attend. Preparation of the families for the differ-
ences between units by use of a transfer protocol
may help to prevent undue stress and increase fam-
ily satisfaction (Van Waning, Kleiber, & Freyen-
berger, 2005).
Although families are glad to have their children
discharged from the hospital, there are stressors
that can accompany this transition as well. This is
especially true for parents of children who have
been in the ICU. Evidence shows that these indi-
viduals can experience feelings of uncertainty and
unpreparedness as caregivers following discharge
home (Bent, Keeling, & Routson, 1996). Adequate
time for planning and preparation with families can
make the transition easier. Some patient discharge
situations may require collaboration with multidis-
ciplinary team members, such as social workers,
discharge planners, pharmacists, and home health
providers, to ensure that the resources needed fol-
lowing discharge are available.
Family Case Study: Comantan
Family
The following case study of the Comantan family demon-
strates family nursing approaches to providing health care
to a family with children. The primary patient is Carl,
3921_Ch13_387-432 05/06/14 11:25 AM Page 420
Family Child Health Nursing 421
1999
46
Leena
30 yr
42
M 1960
M 1997
M 1975
Carine
32 yr
Harry
70 yr
� 1938 � 1948 � 2001 � 2002
Relah
60 yr
Jesse
35 yr
Big
Frank
33 yr
Carl
9 yr
2001
Sam
7 yr
2005 2008
Little
Frankie
2 1/2 yr
Insurance
covers only
part of Carine’s
pregnancy and
delivery
Big Frank dad
away from family
2-3 days
employment
Church
congregation
Job security
insurance
connected
Living
rural
Inuit culture
dominates main
communityRebecca RN
lives nearby,
supportive
Clinic and
hospital 60
miles away
Clinic and
hospital HC
personnel know
Carl and family
Being brown
in a white
dominated
society
Food bank
in town
Strong relationship
Weak relationship
Tense relationship
Direction of
energy flow
FIGURE 13-1 Comantan family genogram.
FIGURE 13-2 Comantan family ecomap.
3921_Ch13_387-432 05/06/14 11:25 AM Page 421
The Family Story:
Big Frank and Carine have been married for over 11 years.
The children are their biological children from this marriage.
Neither has been married before. They went to high school
together and met when Big Frank did business at the
gas station where Carine worked. They both attend the
same church.
Big Frank works part-time as a professional truck driver
for a trucking corporation in the region. He is often gone
from home for 2 to 3 days at a time for his work. The com-
pany offers limited major medical insurance for Big Frank
and his family. Office visits and care under $800 are not
covered. Carine’s pregnancy care and births are covered at
60% of the cost. She receives no paid maternity leave
benefit from her employer.
Carine works at a local gas station that has a small gro-
cery store attached. She manages the grocery store. The
store is five miles from their home in the nearby village of
Anokiviac. Big Frank and Carine are worried that they can-
not make enough money to save, let alone pay the ongo-
ing bills for electricity, gasoline for their vehicles, heating oil
for their home, and clothing. They feel fortunate to be
members of a cohesive community of family and friends,
and to have jobs. Many people in their area do not have
full-time employment. There are no family aid programs in
the area. Monthly, they travel to the town an hour’s drive
away to go to the local food bank. They get a box of sta-
ples that includes flour, rice, canned vegetables, and dried
milk. The food bank requires that they show bills and pay
statements to prove that they qualify for the food. Some-
times the food bank has a very limited number of items.
Big Frank and Carine strongly believe in making and
keeping strong relationships with the people in their family
and community circles. They talk about how people have
helped each other in the past and how they are always on
the lookout for someone who needs help. From one con-
versation with a teacher, Carine learned about a summer
program for first graders. She was able to enroll Sam in
that 2-week-long program in the town, where he stayed
with a cousin’s family. In exchange for the cost of the pro-
gram, she helped several evenings in their local school
program during the school year.
These evening programs during the school year were
also helpful for Carl, since he missed several days during
the school year due to his coughing and respiratory ill-
nesses. As a result of the extra time and attention, he has
been able to keep up with his classmates at his school.
Carine and Big Frank help the children’s Aunt Leena under-
stand how to help Carl with his studies, since she cares for
the children while the parents are working. Carine and Big
Frank believe that if they and a few other people, such as
Aunt Leena and the school teachers, know Carl well, they
will notice when he starts to become ill. They believe that
they have been able to avert many serious illnesses for
Carl because they and the adults he is around know him
well. They do not get overly worried if he wheezes a little,
which they consider normal for Carl. If he gets more short
of breath, however, or if his appetite wanes, then they
know he is getting sick. Even his brother, Sam, knows
about Carl being “fever hot” as he calls it, and worries
openly about his brother when he is ill. Sam and little
Frankie will bring Carl water and crackers when he is sick.
The younger children also know about Carl’s inhaler and
will bring it to him when he is wheezing.
The physicians and nurses at the clinic in the town
know that, when Carine, Big Frank, Aunt Leena, or other
family members call saying Carl is ill, the situation is
serious. They listen with high regard.
Big Frank is a partially disabled veteran of the U.S. Army.
He served in an international war overseas and was injured
in a tank attack. His disability involves his left leg and left
arm, both of which are severely scarred from burns. He has
decreased range of motion and sensation in both of these
limbs. His left chest and face are also scarred; however, he
did not lose vision or function of his shoulder or face. He is
not overweight and is physically strong and fit.
Carine has good health but knows there is a family his-
tory of coughing spells. She is not overweight and is physi-
cally strong and fit. Both Carine and Big Frank work hard to
eat well and feed their children healthy food. They eat
frozen vegetables and fruits, and bread made by various
family members. Their protein sources include fish that they
catch and either elk or caribou from the annual fall family
hunt. Occasionally they have seal, obtained as a result of
traditional hunts by Big Frank and the extended family.
Carine and Big Frank will drink an occasional beer but
do not drink any other alcoholic beverages. Many of their
extended family members and folks in their community
drink beer, sometimes to excess, resulting in drunken be-
havior. Carine and Big Frank worry that their children may
drink excessively as adolescents and adults. They do not
allow their children to drink any beer or other alcoholic
beverage. The extended family members and the folks in
the community practice the same behavior. Group disap-
proval occurs when drunken behavior occurs and those
persons are taken home.
Carl is generally healthy except for his asthma and fre-
quent episodes of upper respiratory infections. These often
progress into lengthy bouts of wheezing and coughing. He
frequently wheezes in the morning on awakening and
when he plays outside. He misses all or parts of days from
school due to his illnesses approximately 25% of the time.
422 Nursing Care of Families in Clinical Areas
3921_Ch13_387-432 05/06/14 11:25 AM Page 422
He has an inhaler, but he occasionally forgets to bring it
with him to school and church or out to play. He takes his
antibiotics and other medications well. He says out loud,
“This is for my breathing!” He also says to little Frankie,
“This is not for you, this is my medicine! It is icky, you
should never eat it!” Carl knows that his mother, Aunt
Leena, school teacher, and Sunday school teacher know
about each of his medicines. Carine and Big Frank are con-
sidering sending Carl to asthma camp for 2 weeks in the
city during the summer. The physician at the hospital has
recommended Carl receive a foundation-funded scholar-
ship at the camp because they note that he learns quickly
and likes to be with other children. Also, the physician told
Carine and Frank that they think Carl could benefit from
the time to focus on learning more about managing his
own condition.
Sam and little Frankie are both healthy. They have had
occasional respiratory illnesses. Sam and Carl both had the
chickenpox, as the varicella vaccine was not available in
their area at the time. Carine and the children are up-
to-date on their vaccines. Big Frank has not had an in-
fluenza vaccine and does not recall when he had other
immunizations since he left the military.
While Carine is at work, all three children go to their
Aunt Leena’s home either all day or after school, depend-
ing on their age. Aunt Leena’s home is a 5-minute walk
from the school. Aunt Leena has a car and has driven Carl
to the emergency department several times during the last
year when he has had severe bouts of wheezing and a
fever. Aunt Leena lives with her husband, Uncle Jesse, who
works as a truck driver and bush plane pilot in the area.
Aunt Leena does not work outside her home. She is in-
volved in the care of her brother’s children and is looking
forward to the next child. She occasionally takes a little gas
money when her brother, Big Frank, offers. She is commit-
ted to helping her brother and his family in any way she
can. She and her husband want children but have been
unable to conceive.
Grandparents Harry and Relah, who are a 5-minute
walk from Big Frank and his family, are also involved in
watching, guiding, and helping their three grandchildren.
Grandmother Relah has learned many treatments for ill-
nesses over her lifetime. She studied for a while with one
of the tribal shamans many years ago and maintains con-
tact with the shaman. She makes mint and berry teas for
Carl, makes steam for him in the kitchen, and feeds him
dried fish for strength and healing. She talks to Carl and his
brothers about the herbs she makes from various berries,
bark, and leaves in their environment. She also encourages
them to think about being strong and quick, wise and car-
ing in their world. She talks to Big Frank about taking Carl to
visit the shaman. They have not yet decided if they will fol-
low through with this recommendation.
Big Frank and Carine consult extended family members,
particularly the elderly parents and other elders in the area
regarding health and family matters of all kinds, including
seeking advice regarding Carl’s respiratory infections and
wheezing. As the nearest clinic, hospital, or health care
facility is more than 60 miles away, they are careful about
taking the time and gasoline to drive there. Big Frank and
Carine consider themselves equal decision makers with
regard to family health matters and will consult providers
and family members. Both are held in high esteem in their
family and surrounding community. They are supported
through congregational prayer in their church, particularly
when Carl is ill. Church members, especially direct relatives,
often bring food to the Comantan family home when Carl
is ill or when Big Frank is gone for several days on his job.
One of the Comantan family’s neighbors is a registered
nurse, Rebecca, who lives about 5 miles away. She works at
one of the clinics associated with the hospital that is in the
town 60 miles away. One time she took Carl with her to the
clinic so that he could see his physician and get a renewal on
an anti-inflammatory medication. She often laughs and says
she is another “Auntie” for Carl and his siblings. She says she is,
at least, their cousin, even though she is Salish and not Inuit.
Health Care Goals for the Comantan Family:
• Reduce the frequency and severity of Carl’s respiratory
illnesses.
• Reduce the number of Carl’s missed school days. Maintain
age-appropriate academic success.
• Increase the number of developmentally appropriate
responsibilities and decision-making processes for Carl as
he learns to manage his own illness.
• Prevent Carl’s daily wheezing by improving management
of asthma.
• Promote Carine’s health during her pregnancy.
• Promote Big Frank’s healthy coping with the pain and
discomfort of his injuries.
• Enhance health resources for the family in its community.
• Reduce the family’s barriers to health and increase its
strengths for health.
Goals for Nurses Working With the Comantan
Family Across Health Care Settings:
• Build a therapeutic and collaborative health-focused rela-
tionship with Carl and the Comantan family.
• Explore ways to reduce the frequency and severity of
Carl’s respiratory symptoms.
• Explore with Carl and his family ways to mediate and adapt
to the overall impact of his illness on him and his family.
Family Child Health Nursing 423
(continued)
3921_Ch13_387-432 05/06/14 11:25 AM Page 423
• Explore the health care resources for the Comantan family.
• Explore the main strengths and stressors for Carl and his
family.
• Commend the Comantan family for its current health
efforts and outcomes.
• Focus on maintaining stability in the Comantan family.
Family Systems Theory in Relation
to the Comantan Family:
The use of Family Systems Theory addresses the complex
needs of each individual within the family, and the family
as a whole. The individual concepts from the Family
Systems Theory apply as follows:
Concept 1—All Parts of the System Are
Connected:
Carl and his family are deeply and actively embedded in
their family life and their community. Each family and com-
munity member contributes to the health of Carl and his
family. When Carl is ill, connections are activated to be-
come supportive in a focused manner, according to the
needs identified.
One assumption of family systems is that the features
of the system are designed to maintain stability of the sys-
tem, using both adaptive and maladaptive means. The
Comantan family is adaptive to Carl’s illnesses in its fre-
quent, focused interactions with family and friends. The
family members realize that their situation may change
quickly, for example, with finances, and that they may sud-
denly find themselves in financial stress. Family members
also recognize that Carl’s health may change quickly, and
they know several people should know how to monitor
Carl’s health and know what to do if he shows signs of
respiratory distress. Their connections with Aunt Leena are
part of that adaptation. They realize that with an intentional
increase in the number of people who know Carl well,
there is a greater likelihood that no matter where he is, he
can be quickly and accurately assessed for severity and risk.
Each family member has many roles, each affecting one
another. Big Frank, for instance, is a provider of financial
resources, a responsible adult in his social community, a car-
ing son to his parents, a guardian of the culture, and a caring
father. These roles influence many aspects of his family.
Carine is a provider of financial resources, a responsible adult
in her social community, including the school, and a caring
mother. These roles influence many aspects of her family.
Concept 2—The Whole Is More Than the Sum
of Its Parts:
The family members consistently support each other, rec-
ognizing the strength of the whole. The Comantan family
believes individuals doing their part contribute to the
overall health of all and the ability of each to help at
various times. The Comantan family adults focus on
increasing health of all members in the long term while
adapting to Carl’s illness. For example, because Carl
misses school due to his illness, they plan for Aunt Leena
to help him. They also arrange for Sam and Carl to be in
summer programs. The family adapts to health needs of
one member while taking care not to compromise the
health of the other members.
The Comantan family is a cohesive unit with a lot of
interdependence. This is consistent with its societal be-
liefs of helping each other survive and thrive. Family
members believe that each person has value, yet each
has responsibilities to the others in the group. They take
great pride in teaching each other necessary and helpful
things. This is especially true of the elders to the younger
members. The elders do listen to the new ideas of the
younger members, however, realizing that all ideas are
worth consideration.
The entire family is happily anticipating the arrival of
the new baby. They hope it is a girl, but they will be
happy whether the baby is a boy or a girl. This normative,
expected event may require the three boys, Carl, Sam,
and little Frankie, to stay with Aunt Leena and Uncle
Jesse during the birth and early postpartum stage. This
will depend on the circumstances, and the aunt and
uncle are prepared.
Concept 3—All Systems Have Some Form of
Boundaries or Border Between the System and
Its Environment:
The Comantan family stays close to family and friends, yet
is mindful of the amount and types of contributions made
between families. For example, if Carl needs to go to the
hospital, Aunt Leena will strive to be the one who takes
him, rather than asking Rebecca to do so.
The family has fairly open boundaries within its local
community, and does reach out to a few resources in
the town 60 miles away. The family likes the idea of
Sam going to the summer program and staying with
his cousins because they knew the teacher and the
supervisors.
The grandparents help Carl and his brothers find the
boundaries of their heritage within the larger white Ameri-
can culture. They are teaching Carl about these boundaries
and expect Carl to model these for his two younger broth-
ers, as well as for other children in the community.
Rebecca, the nurse, who is Salish (not Inuit), is
trusted and the family is open with her. The family is
also open with the members of the congregation of
their church.
424 Nursing Care of Families in Clinical Areas
3921_Ch13_387-432 05/06/14 11:25 AM Page 424
Concept 4—Systems Can Be Further Organized
Into Subsystems:
The Comantan family and the family of Aunt Leena and
Uncle Jesse are an important subsystem in the Comantan
family’s overall functioning. Aunt Leena and Uncle Jesse
contribute a lot while gaining contact with their beloved
nephews. The grandparents, Harry and Relah, are also an
important subsystem of the Comantan family, as are the
children versus the adults.
Nursing Plan Using the Family Systems
Approach:
The nursing plan for this family is more holistic if the Family
Systems Approach is used.
Nurse Assessment—Noticing/Data Gathering
and Interpretation:
• Explore in detail the expectations the family—including
parents, grandparents, and aunt and uncle—has for Carl
in relation to managing his health. Use affirmations, clari-
fications, respect, salutations, and honesty.
• Ask the family to share details of its health practices, in-
cluding any herbal or practice treatments used by Grand-
parents Harry and Relah.
• Learn the history and what the family expects about the
future of Carl’s chronic illness.
• Explore triggers and factors that worsen his condition.
• Assess Carl’s overall growth and development, his
medications, what substances he has used or been
given for his health, his health-related behaviors, and
his interpretations of all of these items. For example,
determine the level of growth and development impair-
ment the family has noticed as a result of his respira-
tory illnesses and treatment.
• Discuss the concept of illness trajectory for the Comantan
family.
• Explore what the family thinks is helpful, what might be
helpful, and what is not helpful.
• Explore the main adaptive features the family identifies.
• Explore additional health and health cost resources for
the family, particularly for the occasions of Carl’s poten-
tial hospitalizations in the future, for Carine’s pregnancy
and delivery, and for Big Frank’s pain management.
• Explore any health care disparities the family has experi-
enced or perceived.
• Assess the entire family’s immunization status.
• Explore the impact of Big Frank’s absence for 3 days at a
time when he is driving his truck for work.
• Ensure that various family members have Carl’s medica-
tions handy at their homes.
• Assess the boundaries of care and involvement for Aunt
Leena and Grandparents Harry and Relah.
• Look for trends, health patterns, illness patterns, and
disease patterns for Carl’s management behaviors and
outcomes.
Interpretations:
• The Comantan family strengths include their health
behaviors, health actions, and beliefs. They reportedly
practice health behaviors that help all members without
the expense of hurting another family member.
• The Comantan family has coordinated care for Carl
within its family and community. They are strong advo-
cates for his health and well-being.
• Many members of the extended family are integral to Carl’s
health and the health of the entire Comantan family.
• Realize that the data so far do not support any major
stressors when Big Frank is gone for 3 days at a time.
This may change with Carine’s advancing pregnancy
and birth.
• The Comantan family career has multiple concurrent
developmental needs, tasks, and transitions. For
example, consider the dynamics of the transition of
the new baby coming via Carine’s pregnancy, Carl’s
chronic illness, and developmental needs of all the
family’s children.
Nursing Actions/Interventions:
• After assessing parents’ interest and ability to read written
material, bring appropriate written materials to Carl and his
family about treatment and management of asthma.
• Review with Carl how to use an inhaler and talk with Carl
and his family about recognizing and reducing respiratory
triggers.
• Counsel and educate family members on appropriate
treatment and management of asthma, reviewing treat-
ment goals and objectives.
• Commend the family on its management of each illness
episode and its overall management of family members’
health.
• Explore with the family members what they believe
will be risky times for Carl’s health, such as spring,
when plants are blooming and his asthma symptoms
increase.
• Support the various roles of family members and subsys-
tems within the family, such as Carl interacting with his
uncle and grandfather as adult male role models when
his father is away on the road.
• Recognize the principle of honoring cultural diversity and
incorporate the roles of Aunt Leena and Uncle Jesse.
• Recognize the role of the grandparents in Carl’s cultural
upbringing, especially learning about his Inuit culture and
history.
Family Child Health Nursing 425
(continued)
3921_Ch13_387-432 05/06/14 11:25 AM Page 425
• Recognize the strengths in the family, for example, its efforts
to keep Carl successful at his grade level in school.
• Work collaboratively with the family in identifying and
evaluating sources of help and support they already use.
• Discuss with the Comantan family the advantages and
disadvantages of sending Carl to a 2-week residential
camp for children with asthma.
Evaluation:
• Noticing how the family has coordinated many people
for Carl’s care: the nurse, Rebecca, Aunt Leena, and the
grandparents.
• Assessing how the family is doing with reducing triggers
for Carl’s asthma, as well as helping him when he
wheezes.
• Monitoring the presence or absence of wheezing, number
and duration of respiratory infections, and number of
school days attended.
• Considering the impact on the family if Carl is hospitalized
for a severe attack, infection, or both.
• Considering the question of the projected impact of Carl’s
illnesses on the new baby. For example, the risks of Carl’s
infections on a newborn infant.
• Considering types and potential impact of health-illness
transitions for the Comantan family.
• Considering additional developmental challenges the
family may face in the future, such as the increased
mobility of little Frankie and the increased activity
needs of Sam.
• Asking if there are any additional foci for the family that
have not been addressed.
• Considering asking the family about their plans for finan-
cial resources during Carine’s maternity leave.
• Asking what additional family strengths could be engaged
to assist them in the future.
426 Nursing Care of Families in Clinical Areas
Web Sites of Interest to Family Child Health Nurses
Organization Web Site Address
Adolescent Health Resources
American Academy of Pediatrics
American Cancer Society
American Obesity Association
Assets Approach to Promoting Healthy
Child Development
Bright Futures at Georgetown University
Census Bureau Minority Links for Media,
American Indians, and Alaskan Natives Minorities
Child and Adolescent Health Measurement Initiative
Child maltreatment
Childhood Asthma
Children’s Defense Fund
Cultural Competence Resources for Health
Care Providers
Family Voices
Grandparents Raising Grandchildren
Healthy People 2010
Institute for Patient- and Family-Centered Care
Kids-N-Crisis
National Center for Cultural Competence
Parents Without Partners
Together for Short Lives
http://www.ama-assn.org/ama/pub/category/1981.html
http://www.aap.org
http://www.cancer.org
http://obesity1.tempdomainname.com/subs/childhood
http://www.search-institute.org/assets
http:///www.brightfutures.org
http://www.census.gov/pubinfo/www/NEWamindML1.html
http://www.cahmi.org/pages/Home.aspx
http://www.childwelfare.gov/index.cfm
http://www.aaaai.org/patients/publicedmat/tips/childhoodasthma.stm
http://childrensdefense.org
http://www11.georgetown.edu/research/gucchd/nccc
http://www.familyvoices.org
http://www.usa.gov/Topics/Grandparents.shtml
http://www.health.gov/healthypeople
http://www.ipfcc.org
http://www.geocities.com/Heartland/Bluffs/5400/sickkid.html
http://www11.georgetown.edu/research/gucchd/nccc
http://www.parentswithoutpartners.org
http://www.togetherforshortlives.org.uk
3921_Ch13_387-432 05/06/14 11:25 AM Page 426
SUMMARY
■ Family child health nurses focus on the rela-
tionships between family life and children’s
health and illness, and they assist families and
family members to achieve and maintain
well-being.
■ Through family-centered care, family child
health nurses enhance family life and the
development of family members to their
fullest potential.
■ The family child health concepts incorporate
relevant components of family life and interac-
tion, family careers, family development and
transitions, family tasks, family communica-
tion, family routines, and family health and
illness, and help nurses to take a comprehensive
and collaborative approach to families.
■ The family child health concepts enable nurses
to screen for potentially harmful situations
(e.g., risk for unintentional and intentional
injury and death); instruct families about
health issues and healthy lifestyles; and help
families to cope with acute illness, chronic
illness, and life-threatening conditions.
■ The family child nurse addresses the needs of
individuals within the family and the family
as a whole to reach developmental and health
potential. For example, siblings of children
with special needs can fair well if given the
guidance and support they need to develop
understanding and empathy, and if included
in the care of their sibling.
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432 Nursing Care of Families in Clinical Areas
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433
Family Nursing in Acute
Care Adult Settings
c h a p t e r 14
Vivian Tong, PhD, RN
Joanna Rowe Kaakinen, PhD, RN
C r i t i c a l C o n c e p t s
■ Families who are viewed as part of the health care team are empowered to deal with the stressors of a family
member’s hospitalization, and are prepared to provide support, aid in recovery, or facilitate a comfortable death.
■ Supportive actions by family members, as well as conflict and criticism, have an effect on the patients’ health
behaviors, emotional well-being, immune function, and illness exacerbations.
■ During the acute illness phase, nursing interventions should focus on patients and their families by providing physical
care and emotional support, facilitating family communication, providing timely information, and establishing a
collaborative, trusting partnership.
■ Family nursing is the provision of care to the entire family unit and is an integral aspect of care provided by nurses in
adult acute care settings.
■ Unit or hospital policies need to be updated so that patient-identified family members are not excluded. Restricted,
nonflexible visitation policies add stress and trauma for both the patient and the patient’s loved ones.
■ Transferring loved ones from critical care units to the medical-surgical units is stressful for families because it creates a
sense of conflict. On one hand, families are glad their loved ones are better, but they also worry that their family
members may not be ready to be moved out of such intensive nurse watchfulness.
■ The family member who advocates for a loved one in the hospital assumes a difficult, time-consuming, and fatiguing
role: he or she often travels long distances to get to the hospital, takes time off work to be there, often stays all night
in the hospital, manages the informational needs of the patient and the family, and works through a complex health
care system.
■ Effective communication with patients, families, and interdisciplinary health care providers improves client satisfaction,
promotes positive response to care, reduces length of stay in care settings, and results in decreased overall cost and
resource utilization.
■ Compassionate communication provides crucial care to families as they are asked to make multiple decisions as their
loved one dies in the hospital.
3921_Ch14_433-476 05/06/14 11:17 AM Page 433
The family is the core of the social environment for
most individuals and serves as the foundation for
social support during health and illness (Gallant,
Spitz, & Prohaska, 2007). Family nursing is the
provision of care to the entire family unit and is an
integral aspect of care provided by nurses in adult
acute care settings. Hospitalization for an acute ill-
ness, injury, or exacerbation of a chronic illness is
stressful for patients and their families. The ill adult
enters the hospital usually in a physiological crisis,
and the family most often accompanies the ill or in-
jured family members into the hospital; both the
patient and the family are usually in an emotional
crisis (Kosco & Warren, 2000). Hospitalized family
members worry about the effects of their illness
and their potentially changed capabilities on
the rest of their family members (Perry, Lynam, &
Anderson, 2006). The family members also worry
about their loved ones, sometimes to the extent of
being neglectful of their own needs (Perry et al.,
2006). When nurses provide care for the whole
family, this allows families to be more supportive
of their ill members, to experience less anxiety,
and to have less disruption in the family system
(Davidson, 2009; Nelms & Eggenberger, 2010).
Involving family members in intervention strate-
gies strengthens family relationships and enhances
the effects of the interventions (Cypress, 2011;
Gooding, Pierce, & Flaherty, 2012; Gutierrez,
2012; Nelms & Eggenberger, 2010; Shelton,
Moore, Socaris, Gao, & Dowling, 2010). Close
social relationships, especially family relationships,
affect physical and psychological well-being, and
promote adherence to disease management plans
that involve changes in health behavior. When fam-
ilies are involved in the care of the loved one in the
hospital, the patient has an increased likelihood of
positive health outcomes (Gooding et al., 2012;
Martire, Lustig, Schulz, Helgeson, & Miller, 2007).
Since the late 1970s, progress to move to a more
family-centered care model in adult critical care
and medical-surgical nursing has been slow but
steady (Latour & Haines, 2007). Families with
members who are acutely or critically ill are seen
in adult medical-surgical units, intensive care or
cardiac care units, or emergency departments. The
acute phase of illness or injury refers to the period
immediately after the onset of the illness or the in-
jury. During this time, family members want to be
able to ask the following questions about their fam-
ily members who are ill or injured: Are they doing
as well as can be expected? Are they getting any
better? Are they in any pain? Has there been any
change? What can I expect in the future? These
questions may be expressed in thousands of differ-
ent ways but stem from the common concern that
they fear for their loved one’s well-being. Having
loved ones in today’s acute care hospital can be an
upsetting experience at any time, but when a stay
in an adult critical care unit occurs (anticipated or
not), it can be especially traumatic (Alvarez & Kirby,
2006; Kentish-Barnes & Azoulay, 2012). Family
members and significant others of critically ill pa-
tients are integral to the recovery of their loved
ones (Molter, 1979, 1994; Pearce, 2005).
The purpose of this chapter is to describe family
nursing in acute care settings, including families in
the critical care units and medical-surgical units. A
review of literature captures the major stressors
families face during hospitalization of an adult family
member: the transfer from one unit to another,
being discharged home, participation in cardiopul-
monary resuscitation (CPR), withdrawing life sup-
port therapy, and organ donation. This chapter
concludes with a family case study that (1) high-
lights the issues families experience and adapt to
when an adult member is ill; and (2) applies the
Family Assessment and Intervention Model in
order to demonstrate one theoretical approach for
working with families.
FAMILIES IN CRITICAL CARE UNITS
The American College of Critical Care Medicine
Task Force (2004–2005) developed 43 evidence-
based practice guidelines for supporting and in-
volving family in intensive care units (ICUs)
(Davidson et al., 2007). These guidelines address
topics such as the “endorsement of a shared decision-
making model, early and repeated care conferenc-
ing to reduce family stress and improve consistency
in communication, honoring culturally appropriate
requests for truth-telling and informed refusal,
spiritual support, staff education and debriefing
to minimize the impact of family interactions on
staff health, family presence at both rounds and re-
suscitation, open flexible visitation, way-finding
and family-friendly signage, and family support be-
fore, during, and after a death” (Davidson et al.,
2007, p. 605). This section presents evidence-based
practice on family nursing in critical care units,
434 Nursing Care of Families in Clinical Areas
3921_Ch14_433-476 05/06/14 11:17 AM Page 434
specifically addressing family needs when a mem-
ber is in the ICU: visiting policies, waiting rooms,
family interventions in the ICU, and ways to work
with families to decrease family relocation stress
and transfer anxiety.
Family Needs in the ICU
Family visitors in ICUs report and demonstrate
symptoms of anxiety or depression after having
their family members in the ICU for a few days
(Pouchard et al., 2005). In addition, family mem-
bers were at significant risk for development of
post-traumatic stress disorder (PTSD) when they
had family members in the ICU (Azoulay et al.,
2005). The needs of family members with loved
ones in the ICU have long been studied (Paul &
Rattray, 2008). The classic work of Molter in 1974
first identified the following 10 family needs in the
intensive care unit, listed in descending order:
1. Hope
2. Health care provider caring about the patient
3. Having a waiting room near the patient
4. Being called at home for a change in patient
condition
5. Knowing about the prognosis
6. Having questions answered honestly
7. Knowing specific facts about prognosis
8. Receiving information about patient
once a day
9. Having explanations in understandable terms
10. Seeing patient frequently
Warren developed the Critical Care Family
Needs Inventory (CCFNI) based on this work by
Molter. The CCFNI has been demonstrated to be
a valid and reliable instrument to assess family
needs (Paul & Rattray, 2008). It collapsed family
needs into three categories: assurance, proximity,
and information.
What is crucial for nurses to know about this re-
search is that health care settings have been only
partially responsive to the needs of families for in-
formation or assurance. Table 14-1 illustrates that,
although nurses are providing more information to
family members and that families can see their loved
ones more frequently, nurses are not providing re-
assurance to family members or meeting the needs
that families identify as important to their own
health and well-being (Browning & Warren, 2006).
Kinrade, Jackson, and Tomnay (2009) used the
CCFNI in an ICU with no restriction on visiting
hours to determine family needs and found that the
most important family need was to have questions
answered honestly and for information to be shared
in a timely manner. A study by Douglas, Daly, and
Lipson (2012) found that patient quality of life
Family Nursing in Acute Care Adult Settings 435
Table 14-1 Family Needs in the Intensive Care Unit
Family Needs Always/Usually Met Family Needs Never/Sometimes Met
• Informed about medical treatments
• Aware of why and what care is being provided
• Knows somewhat about the prognosis
• Allowed to visit in the intensive care unit (ICU)
frequently
• Understands different types of staff caring for family
member
• Knows who to call in the ICU for information
• Given directions for things to do at bedside while
visiting
• Called at home for condition changes
• Has support of friends and family
• Knows what is being done for their family member
• Need explanations in lay terminology
• Need to have access to quality food in the hospital
• Assured it is okay to leave the hospital for a while
• To be prepared for the ICU environment before entering
the unit the first time
• Talk to the same nurse every day
• Have feeling of hope supported
• Share feelings, especially those of guilt, anger, or fear
• Feel accepted by the hospital staff
• Discuss the possibility that family member may die
• Visit anytime
Adapted from Browning, G., & Warren, N. (2006). Unmet needs of family members in the medical intensive care
waiting room. Critical Care Nursing Quarterly, 29(1), 86–95.
3921_Ch14_433-476 05/06/14 11:17 AM Page 435
436 Nursing Care of Families in Clinical Areas
rarely was discussed with families when a loved one
had a long stay in the ICU. Families with a member
who had unexpected admissions to the ICU were
noted to have different needs than families who had
planned admissions. When a patient has an uncer-
tain prognosis from a stay in the critical care unit,
family needs were found to be different than when
the prognosis was favorable (Prachar et al., 2010).
Family members who were dealing with a poor
prognosis expressed a need to talk about their feel-
ings of what happened and wanted a pastor to visit
(Prachar et al., 2010).
Overall, families reported that they had two dif-
ferent sets of feelings when a family member was in
the ICU (Eriksson, Bergbom, & Lindahl, 2011).
First, families expressed that they fluctuated be-
tween hope and despair. They felt that information
was a way to help them manage these feelings
(Eriksson et al., 2011). Second, families reported
that they hungered for information to help them
make sense of what was happening and described
themselves as being hypervigilant to even the small-
est information. The most helpful aspect of the
whole experience was their interaction with the staff
(Eriksson et al., 2011). Families want authentic con-
nection with nurses who are caring for their loved
ones (Nelms & Eggenberger, 2010), and commu-
nication is the center of family experiences in the
critical care unit. The family depends on the whole
critical care team to provide care and keep it in-
formed so it can make crucial decisions for loved
ones (Kentish-Barnes & Azoulay, 2012).
Families are the primary support for loved ones
in the ICU (Verhaeghe, Defloor, Van Zuuren,
Duijnstee, & Grypdonck, 2005; Williams, 2005).
Patients reported knowing that their family was at
their bedside and this supported their desire to get
well (Eriksson et al., 2011). Families have been
found to experience cognitive, emotional, and so-
cial stress when family members are in the ICU.
These worries include:
■ Information ambiguity
■ Uncertain prognosis
■ Fear of death
■ Role changes
■ Financial concerns
■ Disruption of normal routines
Nursing Role Ambiguity and Conflict
ICU nurses are in the best position to support these
families because they see them often, know the
patient intimately, and are called to practice holis-
tically instead of based on a biomedical model. Yet,
many ICU nurses continue to view families as
obstacles to care and consistently underestimate
their professional role in meeting the needs of these
families (Verhaeghe et al., 2005). What ICU nurses
believe families need does not always match what
families identify as their needs (Kinrade et al., 2009;
Maxwell, Stuenkel, & Saylor, 2007; Prachar et al.,
2010). Therefore, it is important to explore why
this dichotomy continues to exist given the evi-
dence that has been known since Molter’s work was
published in 1974.
Stayt (2007) investigated nurses’ perceptions of
their ability to practice family nursing in the ICU.
Two important findings in this research offer an in-
sight into understanding these nurses’ experiences:
nurses express role ambiguity and role conflict. Role
ambiguity is when nurses find themselves with an
unrealistic role expectation. The nurses were found
to believe that it was their responsibility to “make it
right” or to “take away the family members’ worries”
rather than to provide emotional support for families
dealing with the uncertainty of outcome for a family
member in the ICU. The nurses expressed that they
felt guilty for not helping families. The nurses un-
dervalued their contribution to meeting the family
needs during this stressful time. Nurses identified
that they felt they lacked training in how to work
with families.
Moreover, ICU nurses identified two types
of role conflict (Stayt, 2007). The first role conflict
was difficulty in balancing the biomedical technical
model of care with the holistic nursing model
of care. Chesla (1997) reports a similar role conflict
for ICU nurses between technical care and social-
emotional care. Nurses are torn between caring for
the medically unstable patient, who is their priority,
yet recognizing that they are responsible for caring
for the entire family. The second type of role
conflict was the balance of their professional rela-
tionship and the more personal relationship the
family seeks with the nurse (Stayt, 2007). The nurse-
family relationship is established during an intense
emotional time for the family. After a period of time,
the family was described as seeking too much self-
disclosure from the nurses. Nurses found keeping pro-
fessional boundaries fatiguing and time-consuming.
Therefore, the nurses described that they used
detachment strategies to keep their relationship pro-
fessional. For example, they would ask for a different
patient assignment. Or nurses would physically
3921_Ch14_433-476 05/06/14 11:17 AM Page 436
distance themselves by focusing only on tasks when
they entered the patient’s room. They found ways
to limit conversation with the family. They found
themselves emotionally distancing themselves from
the family so they would not engage on a personal
level.
Nurses recognized the importance of families and
wanted to work with them in the ICU, but they
found it difficult to provide for the emotional needs
of family members. Hospital educational programs
are needed to support nurses in providing family-
centered care versus patient-centered care. Commu-
nication with families can be learned and practiced
in the ICU environment (White & Curtis, 2006).
Visiting Policy
Most ICUs (70%) have visitation policies to the
ICU that restrict visitors (American Association of
Critical Care Nurses [AACN] Practice Alerts,
2012). Yet the evidence is clear that unrestricted
visitation decreases patient anxiety, confusion, and
agitation; reduces cardiovascular complications; de-
creases ICU length of stays; makes patients feel
more secure; increases patient satisfaction; and en-
hances quality and safety (AACN Practice Alerts,
2012, p. 76). Moreover, evidence suggests that un-
restricted visitation increases family satisfaction,
decreases family member anxiety, promotes better
communication, contributes to better understand-
ing of the patient, allows more opportunities for
patient/family teaching as the family becomes more
involved in care, and is not associated with longer
family visits (AACN Practice Alerts, 2012, p. 76).
The AACN suggests that there are times when
family visits should be restricted: documented legal
reasons, when a visitor has a communicable disease,
or if the behavior of a visitor is a direct risk to the
patient. AACN (2012) recommends that children
supervised by an adult family member should be
welcome in the ICU and should not be restricted
by age alone.
Unit or hospital policies may need to be up-
dated so that patient-identified family members
are not excluded (Harvey, 2004; Rushton, Reina,
& Reina, 2007). Such administrative revisions
need to take into consideration evidence-based
data so that both nursing staff and families can be
confident that patient care systems reflect these
visionary professional standards even when pa-
tients cannot speak for themselves (Latour &
Haines, 2007; Verhaeghe et al., 2005).
Family Nursing in Acute Care Adult Settings 437
Debate over the “correct” quantity and fre-
quency of visits in adult critical care units contin-
ues into the 21st century (Day, 2006; Miracle,
2005). Policies that have been tried and often
revisited have included 10 minutes every hour,
30 minutes several times a day, two visitors at a
time, immediate family only, open visiting, closed
visiting with rare exceptions, and many more ver-
sions of all of the above. These restrictions often
are in place because health professionals feel that
having visitors interrupts patient care and also
may affect the patient’s well-being. But research
has shown otherwise. Here are some specifics.
Fumagalli et al. (2006) found that when cardiac
patients had unrestricted visiting hours, these
patients had fewer cardiovascular complications
compared to those patients who were restricted
to visitors twice a day. Liberal visiting hours not
only helped patients, but benefited the staff. Fam-
ily members served as historians, participated in
daily rounds, and assisted with care. In addition,
allowing visitors decreased unexpected calls, in-
creased participation and engagement with staff,
and increased patient and family satisfaction
(Jacobowski, Girard, Mulder, & Ely, 2010). More
important, unrestricted visitation reduced anxiety
among patients and families (Garrouste-Orgeas et al.,
2008; Gooding et al., 2012).
Professional nursing organizations, such as the
American Association of Critical Care Nurses
3921_Ch14_433-476 05/06/14 11:17 AM Page 437
(AACN) (mentioned above) and the American
Nurses Association (ANA), have supported the
position that, despite being in critical condition,
patients cannot receive adequate care when they
are isolated from their families (Bice-Stephens,
2006; Latour & Haines, 2007). The Joint Com-
mission of Hospitals likewise recognizes the im-
portance of visitation. In 2011, the Commission
added an element to the Patient Rights Standard,
which states that hospitals should permit friends
and family members to be present during hospi-
talization in order to provide emotional support
to the patient (Joint Commission on Accredita-
tion of Healthcare Organizations, 2010). Based
on scientific evidence, the American College of
Critical Care Medicine also endorses more flexi-
ble visiting hours in the intensive care unit
(Davidson et al., 2007). Families are foundational
to the comprehensive care of all patients, so it is
the responsibility of every nurse and every health
care agency to implement and regularly evaluate
visitation policies and procedures that reflect this
philosophy (Pearce, 2005).
Cell Phones
Cell phones are an integral tool of our lives. Fam-
ily members rely heavily on cell phones to remain
connected to others (Eriksson et al., 2011). In
many intensive care units, cells phones are banned
because there is concern that these devices may
emit electromagnetic radiation that interferes
with the functioning of medical devices (Makic,
VonRueden, Rauen, & Chadwick, 2011). But newer
data and voice phones do not present these issues.
Hospitals should consider assessing their policies
on banning cell phones. Limiting the use of cell
phones requires family members to leave and lo-
cate a designated cell phone area, which may be a
challenge. Given that visiting hours and the num-
ber of guests allowed in the intensive care unit are
restricted, family members may hesitate to leave
the ICU to make phone calls considering the bar-
riers for reentry. Reevaluating and updating cell
phone policies is vital in promoting patient and
family satisfaction.
Waiting Rooms
When families of critically ill patients are not in
the unit with their loved ones, they are more than
likely spending a significant amount of time in the
unit’s waiting room (Deitrick et al., 2005). Atten-
tion to the details that may help relieve family
stress is critical. Little research has focused on
family comfort and amenities provided in the
waiting rooms adjacent to critical care units
(Alvarez & Kirby, 2006). But families have con-
sistently voiced desires to have better access to
healthy food and drinks, a variety of comfortable
seating options to account for all people, available
computer access, and nearby rooms for private
meetings with physicians, nurses, or other care
providers. Families have expressed issues with the
lack of privacy, since the waiting room is often
shared with other families (Engstrom, Anderson,
& Soderberg, 2008; Karlsson, Tissell, Engstrom,
& Andershed, 2011). A room that is quiet and
comfortable improves the well-being of family
members (Karlsson et al., 2011). Many ICUs have
been responsive to these expressed needs of fam-
ilies by providing a clean, organized waiting room
area with several small seating sections for family
conversations, adequate soft lighting, a section for
computer work, private meeting rooms, and a spe-
cial play area with age-appropriate toys for various
children’s ages. Some ICUs have dedicated sleep-
ing rooms for family members. Providing a beeper
system for the family to carry when they leave the
unit or waiting room was found to be helpful to
families (Deitrick et al., 2005). Receptionists in
family waiting room areas are gaining in popular-
ity (Alvarez & Kirby, 2006).
438 Nursing Care of Families in Clinical Areas
3921_Ch14_433-476 05/06/14 11:17 AM Page 438
Family Interventions
Aside from open visitation policies, revisited cell
phone policies, and improved waiting rooms, fam-
ily intervention strategies that support both nurses
and families include the following: helping family
members feel as comfortable as possible while in
the room with the patient, including families in the
nurse-to-nurse shift change bedside report, includ-
ing family members in the physician rounds when
they discuss the progress of the patient, involving
families in shared decision making, facilitating fam-
ily conferences, offering families the opportunity
to keep progress journals, and creating a family
nurse specialist in the ICU (Gooding et al., 2012).
Families are often overwhelmed and intimidated
with the fast-paced, noisy, and highly technological
environments that surround their loved ones in the
ICU (Pikka & Beaulieu, 2004). Patients appear
“lost” among all the equipment, tubes, lines, beep-
ing, and bonging sounds, especially when interven-
tions such as dressings or indwelling tubes around
the face and head distort facial features (Maxwell
et al., 2007). ICU nurses who practice from a fam-
ily perspective realize how their everyday world in
this fast-paced, emotionally charged setting is
stressful for families. After the patient is initially
stabilized on admission to the ICU, the nurses
should spend time explaining the equipment and
the immediate goals of nursing care, and role mod-
eling how family members can support their loved
one, including how to touch the person. Nurses
should address fear of all the equipment used in this
setting. This approach is helpful to decrease family
stress and builds on the knowledge that family
members have a strong desire to be by their loved
one, particularly when there is a change in the pa-
tient’s condition. They want to be an integral part
of the patient’s care. Allowing families to partici-
pate in the actual care of their family members like-
wise has been found to offer reassurance, as well as
a way for family members to contribute to their
loved one’s recovery (Alvarez & Kirby, 2006). Fam-
ily members believe that being close to the patient
is their obligation and is a sign of their commit-
ment to the patient (Eggenberger & Nelms, 2007).
Fear of “not being there” if something goes wrong
reinforces family members’ desire to be with the
patient (Eggenberger & Nelms, 2007). Therefore,
nurses must see and include families as an integral
part of the patient’s care.
Supporting the family is another important
nursing intervention. Although the nurses’ priority
is to the patient, families also need support. Emo-
tional stress rises when a family member is acutely
ill and families suffer with the patient during ill-
ness and treatment. They have feelings of helpless-
ness, sadness, and fear (Eggenberger & Nelms,
2007). Some express that their emotions fluctuate
like a “roller coaster” (Linnarsson, Bubini, & Per-
seius, 2010, p. 3102). They attempt to control
these emotions in order to be supportive to the pa-
tient and other members of the family. In addition,
many families feel the need to be watchful and
protective of the patient in order to shield the pa-
tient from the emotions of the illness (Eggenberger
& Nelms, 2007; Karlsson et al., 2011). Families are
gatekeepers of information as they protect and
shield their loved ones from emotional turmoil re-
lated to the care and the illness (Burr, 1998). It is
important that the nurse support the family mem-
bers by connecting with them. Nurses should
spend time, provide information (good and bad),
be honest, share themselves, involve families in
care, and acknowledge the emotional stress they
are undergoing. Families do want and depend on
nurses for social support (Eggenberger & Nelms,
2007; Engstrom & Soderberg, 2007; Fry & Warren,
2007; Karlsson et al., 2011). Because nurses pro-
vide 24-hour care, they are in the best position to
identify and support families.
Families often say waiting in the ICU creates
tremendous physical strain. Families stay long
hours in the ICU just waiting. They wait for in-
formation, to see their loved ones, and for the next
thing to happen. They try to manage their per-
sonal affairs from the hospital, commute back to
their homes after a long day, and take care of the
patient (Eggenberger & Nelms, 2007; Higgins,
Joyce, Parker, Fitzgerald, & McMillan, 2007).
Family members of patients in the ICU also have
been found to be at increased risk for experiencing
anxiety, depression, and PTSD (Azoulay et al.,
2005; Pouchard et al., 2005). Nurses can reduce
some of the strain by providing and seeking infor-
mation for the family members, asking how they
are doing, providing a quiet place for them to rest
or sleep, and determining each day how much
they wish to be involved in the patient’s care
(Cioffi, 2006).
Timed daily family rounds with nurses and
physicians decreased family anxiety and increased
Family Nursing in Acute Care Adult Settings 439
3921_Ch14_433-476 05/06/14 11:17 AM Page 439
communication (Cypress, 2012; Gooding et al.,
2012; Mangram et al., 2005). Careful and consis-
tent information can help mitigate fears. Patients
and families gain a better understanding of the plan
of care when they have the opportunity to verify
information, ask questions, and share concerns
when they are involved in nursing end-of-shift
reports (Reinbeck & Fitzsimmons, 2013; Tobiano,
Chaboyer, & McMurray, 2013). Involving families
and patients fosters an environment of trust,
mutual respect, and understanding (Reinbeck &
Fitzsimmons, 2013). When away from the bedside
and the stimulation of the ICU environment, fam-
ily members are able to hear more clearly and
accurately the explanations and answers to their
questions and concerns. Therefore, nurses should
plan to spend time (e.g., a short 10-minute confer-
ence) with families away from the patient’s bedside
on every shift. Plans for language interpreters
should be made in advance.
Shared decision making is a collaborative process
in which patients and providers make health care de-
cisions together, weighing the medical evidence of
various options and considering the patient’s values.
Shared decision making is crucial in the ICU be-
cause patients often cannot speak for themselves and
many of the treatment options are highly invasive
and may have a high mortality or morbidity compo-
nent to them; therefore, most treatment decisions
should be made from a family perspective (Douglas
et al., 2012). Refer to Chapter 4 for detailed infor-
mation on family shared decision making. Ahmann
and Dokken (2012) outline the following strategies
nurses could use to invite families into partnership
and shared decision making:
■ Use “we” language that demonstrates a team
approach.
■ Request specific help from a family member.
■ Encourage the family members to let the
nurse know when they are confused by test
results or what they are seeing or hearing.
■ Use whiteboards in the patient rooms that
include who is in the room, phone numbers,
and a place for family questions.
■ Give the family a journal in which to keep
notes or write experiences.
■ Invite the family on rounds.
Family meetings or conferences help keep all
members of the health care team, including the
family, focused on the needs of the loved one and
the family. In addition, family meetings help
health care providers communicate among team
members (Nelson, Walker, Luhrs, Cortez, &
Pronovost, 2009). Unfortunately, family confer-
ences that are not well planned in advance have
hindered family learning where too many people
were included, the agenda was too full, and there
were time constraints (Paterson, Kieloch, &
Gmiterek, 2001). The most important point
made was that the health care providers should
be sure not to dominate the discussion and should
allow adequate time for the family to voice con-
cerns and pose their questions. Nelson et al.
(2009) designed a toolkit for family meetings in
the ICU. The toolkit helps ensure that the meet-
ings are efficient, effective, and give all parties
time to be heard in directing client care. The
guide for families includes the following elements
(p. 626.e13):
1. Review what you know:
■ Are you clear about why the person was
brought to the ICU and what the current
medical problems are?
■ What is the plan for your loved one?
■ What treatment choices are available?
■ What medical decisions need to be made?
2. Concerns or worries
■ List what concerns you have about the
current situation.
■ Identify what you are worried about the
most given the current situation.
■ If the team could answer one thing for you
today, what would that be?
3. If the patient can’t talk to you or the team
now, what would the patient say about what
is happening now in her care? Bring any
documents or papers such as a health care
proxy or living will.
Encouraging families to keep a family progress
journal (Kloos & Daly, 2008) or a computer family
blog for extended family and friends decreased
family anxiety. In their analysis of family progress
journals, Kloos and Daly (2008) found the follow-
ing top three family issues addressed: the family
experiencing negative emotions about the physical
appearance of their loved one in the ICU, the need
for more regular communication about what was
going on, and the worry about the pain their loved
one was experiencing. The journals illustrated
that families coped with their stress through their
440 Nursing Care of Families in Clinical Areas
3921_Ch14_433-476 05/06/14 11:17 AM Page 440
faith in God, support of family and friends, and
seeing their loved one get better physically. Fami-
lies wrote that the characteristics of the health
care providers that were the most helpful to them
were kindness, compassion, watchfulness over their
loved one, and availability to answer questions.
To meet family needs, one idea was to design a
specific nursing position to work with families.
This approach allowed the ICU nurses to focus on
providing care to the ill person and relieved some
stress of providing care to the family client. Having
this clinical nurse specialist in the ICU resulted in
increased family satisfaction. These nurses assessed
family unmet needs and relayed information that
increased family understanding, especially about
tests, treatments, and condition (Nelson & Poist,
2008; Shelton et al., 2010). Interestingly, the ICU
nurses reported that they felt this position some-
what interfered with their work, and said that not
working as much with the family was not as satis-
fying for them in the long run.
As patients improve to the point that they are
stable enough to transfer out of the ICU, families
experience different stressors related to relocation
stress and anxiety (Chaboyer, Kendall, Kendall, &
Foster, 2005).
Family Relocation Stress
and Transfer Anxiety
Moving ill family members from the critical care
unit to the medical-surgical unit is stressful for
families. Even though families report relief that
their loved ones are able to transfer out of the ICU,
they also fear that the loss of one-to-one nurse-
patient vigilance will lead to failure to detect im-
portant changes in condition (Chaboyer et al.,
2005; Latour & Haines, 2007). Some families feel
they were unprepared for the transfer and that they
were given little information about what to expect
(Hughes, Bryan, & Robbins, 2005). Families may
interpret the transfer as someone throwing them
out of the ICU (Engstrom & Soderberg, 2004).
Once the patient is transferred, families found
that the nursing care on the medical-surgical unit
is not as predictable as the ICU and families did not
understand the different ratio of nurse-to-patient
staffing patterns (Carr, 2002). Families also found
the relocation stressful because they missed their
relationship with the ICU nurses, and they strug-
gled with changes in the environment, and the
changes in the amount of information they received
(Streator et al., 2001).
Chaboyer et al. (2005) classified the families’
emotions with relocation stress into four emotions
or feelings: abandonment, vulnerability, unimpor-
tance, and ambivalence. Families feel abandonment
when the transfer is abrupt and not planned. Fam-
ilies describe experiencing vulnerability when they
had to accept their new responsibility as a different
kind of family caregiver within the hospital setting.
For example, rather than be supportive family
members from the background, they now had to
provide more actual physical care for their loved
one as physical status improved. Their sense of vul-
nerability was found to be the most intense of these
family emotions. The families reported having a
feeling of unimportance because of the different
staffing ratio on the medical-surgical unit. The last
feeling identified was ambivalence. The families ex-
pressed being caught between the extremes of feel-
ing relieved and happy their loved ones were better,
and their fears and doubts that they were well
enough to leave the ICU.
Involving families in the transfer process effec-
tively contributed to less relocation stress (Eldredge,
2004; Latour & Haines, 2007, McKinley, Nagy,
Stein-Parbury, Bramwell, & Hudson, 2002). Family
conferences scheduled with the health care team are
a perfect opportunity for family members to express
these concerns, and for team members to respond
to all concerns with factual, straightforward infor-
mation. Ideally, both the nurse manager and super-
visor of the sending and receiving hospital units
should participate in this transition. A detailed and
comprehensive written patient care plan helps to
smooth out this important phase of the patient and
family journey (Day, 2006). Family input into this
care plan empowers and reassures families during
this transition to the medical-surgical unit.
FAMILIES IN MEDICAL-SURGICAL
UNITS
It is clear that families who have adult members in
acute medical surgical areas are stressed by hospi-
talization, yet this is one of the least studied areas
of family nursing. In this section, family visitation,
family communication needs, and family needs are
explored. Family interventions relative to discharge
are discussed.
Family Nursing in Acute Care Adult Settings 441
3921_Ch14_433-476 05/06/14 11:17 AM Page 441
Families in acute care settings reported numer-
ous stressors and changes in their family environ-
ment, and are often desperately in need of support.
Nurses are in a position to provide support in the
following ways:
■ Use effective communication: listen to family’s
concerns, feelings, and questions; answer all
questions or assist the family in finding the
answers.
■ Respect and support family coping mecha-
nisms and caregiving behaviors.
■ Recognize the uniqueness of each family.
■ Assist family in decision making by providing
information about options.
■ Permit the family to make decisions about
patient care when appropriate.
■ Provide adequate time to visit privately,
when possible.
■ Facilitate family conferences to allow open
sharing of family feelings.
■ Clarify information and share resources
regarding support groups.
■ Foster positive nurse-family relationships
through all phases of care.
Family Visitation and Caregiving
in the Hospital
Visitation helps to promote family cohesion and
unity (Van Horn & Kautz, 2007). Many of the
same issues about family visitation in the intensive
care unit described previously in the chapter hold
true for family visitation on a medical-surgical
inpatient setting.
Many families enact a bedside vigilance that pro-
vides a close protective function (Carr & Fogarty,
1999). Families displayed both directive behaviors
and supportive behaviors as family caregivers in the
hospital, especially when the hospitalized family
member was older (Jacelon, 2006). Family directive
behaviors were described as follows:
■ Acting in place of the ill family member by
making decisions about care without consult-
ing the ill family members, talking to health
care providers, and being the organizer of care
■ Acting as an advisor to the ill family mem-
ber by working collaboratively with him
on decisions
■ Not acting in some cases; some family mem-
bers were found to be available but did not
become involved in any decision making
Family supportive behaviors identified by Jacelon
(2006) were as follows:
■ Keeping the older family members going and
active: families brought items from home,
visited daily, and sometimes brought the
family pet in for a visit.
■ Keeping the older family member’s life
going: they did many things “behind the
scenes” such as running errands, paying bills,
keeping up homes, and keeping friends
informed.
■ Staying in the background: some family
members were available but not actively
involved in daily caregiving.
More specifically, families help their loved ones
in the hospital in many ways that enhanced their
care in hospitals (MacLeod, Chesson, Blackledge,
Hutchison, & Ruta, 2005). On the other hand,
health care providers on medical-surgical units did
not always see families as partners in patient care in
either the United States or the United Kingdom
(MacLeod et al., 2005). As a result, families reported
feeling unwelcome. Families have stated that gaining
access to see their loved ones was a privilege, which
was extended to them by the nurses, and that they
were careful not to abuse the visiting rules. While in
the patient’s room, they were fearful of annoying the
nurses by their constant presence (Cioffi, 2006).
They avoided asking any personal or emotional
questions (Soderstrom, Saveman, & Benzein, 2006).
For them, they were guests of the patient, not part-
ners in the care of the patient.
442 Nursing Care of Families in Clinical Areas
The work environment can be an obstacle to al-
lowing medical-surgical nurses to provide family-
centered care. The floor nurses often carry a heavy
nurse-patient caseload. Many of these patients are
3921_Ch14_433-476 05/06/14 11:17 AM Page 442
of high acuity, which challenges these nurses with
the same role conflict mentioned earlier: balancing
technical needs of their patients and practicing ho-
listic family-centered care. As a result of these work
challenges, nurses may convey their stress to
families and patients in unintended ways (Astedt-
Kurki, Paavilainen, Tammentie, & Paunonen-
Ilmonen, 2001; McQueen, 2000). Nurses may send
unintended messages by saying something in casual
conversation about how busy they were tonight,
moving quickly and being in a hurry when they
enter the room, and not addressing the family
when they enter the room but instead being very
procedure focused. Nurses can work on being sure
their nonverbal, inadvertent communications match
their concern and caring for the client. Taking a few
moments to center oneself before entering the
client’s room allows the nurses to slow down and
focus on the client and family in the room and not
on what needs to be done in the busy day.
Communication with the family is crucial for
the nurses, the patients, and the families in order
to improve the patients’ health outcomes. The
placement of whiteboards in patient rooms is an
increasingly common strategy used in hospital set-
tings to improve communication. These boards,
typically placed on a wall near a patient’s hospital
bed, allow any number of providers to communi-
cate a wide range of information such as date of
the day, the name of the nurse, aide, doctors
on that shift, notes from loved ones to the ill per-
son, phone numbers of the family to call in case
of condition changes, patient-identified outcome
goals for that specific day, questions for providers,
and expected date of discharge (Sehgal, Green,
Vidyarthi, Blegen, & Wachter, 2010). Including
families in patient rounds with physicians and
nurses helps to keep communication clear between
providers and family members. Limiting the num-
ber of interruptions to the nurse while working
with the patient and family would improve com-
munication and send messages of importance to
the family and patient (Darc, Lennon, & Sanders,
2013). Hospitals have moved to limited number
of overhead pagers so that patients and families
are not bombarded with noise and the workings
of the facility. Proactively providing information
to patients’ families will reduce the number of in-
terruptions for nurses. Some hospitals text fami-
lies with updates on a family member that do not
contain intimate details but are updated status
reports (Darc et al., 2013).
Family Communication Needs
Effective communication between and with pa-
tients, families, and interdisciplinary health care
providers improves client satisfaction, promotes
positive response to care, reduces length of stay in
care settings, and results in decreased overall cost
and resource utilization (Ahrens, Yancey, & Kollef,
2003). Nurses believe that conveying information
to families is essential when caring for both acute
and chronically ill patients; at the same time, how-
ever, they reported refraining from doing so be-
cause they do not want to be “in the middle” or
cause conflict between the family and the attending
physician (Zaforteza, Gastaldo, de Pedro, Sánchez-
Cuenca, & Lastra, 2005). It was found that nurses
provide only basic information to family members
and rarely attend to the families awaiting news in
waiting rooms (Zaforteza et al., 2005). Nurses
underestimate the needs of families, particularly
the need for information and the need of family to
be close to the patient (Higgins & Cadd, 1999;
Kleinpell & Powers, 1992).
Nurses identified additional barriers to family
communication that included the lack of perceived
permission to share information and lack of knowl-
edge regarding what information has already been
shared with family members by the physician
(Zaforteza et al., 2005). Nurses did not want to
contradict physician information and expressed
being worried about creating false hopes in the
family. Nurses were concerned about families mis-
interpreting what was said because the nurses
lacked training in managing family’s emotional re-
sponses, especially when the family shared negative
emotions. Thus, nurses as part of the interdiscipli-
nary team were found to avoid communication
needs of the patients and the families. Rather,
nurses focused their communication efforts on the
needs of the institution, other health professionals,
and themselves (Hardicre, 2003; Zaforteza et al.,
2005). Nurses must advocate more readily for shar-
ing information with families. One way for nurses
to advocate is to be sure to be present in the room
and participate in physician family conferences.
Nurses are in a position to help families understand
what the physician means and they serve as a
sounding board for the family. Nurses must learn
to facilitate patient-family interaction and commu-
nication that will increase family support of pa-
tients at the bedside (Zaforteza et al., 2005). Clear,
concise, timely information has been found to
Family Nursing in Acute Care Adult Settings 443
3921_Ch14_433-476 05/06/14 11:17 AM Page 443
reduce family anxiety and have a calming effect
(Mitchell, 2009; Zaforteza et al., 2005).
Assessment of patient care needs is integral to
nursing and to providing optimal care at the bed-
side. It is essential to complete a thorough psy-
chosocial and emotional evaluation to communicate
effectively with patients and their families. In par-
ticular, nurses should explore each family’s feelings
about the uncertainty of the situation, anxiety, frus-
tration, and fear of losing a family member (Chien,
Chiu, Lam, & Ip, 2006; Zaforteza et al., 2005).
Communicating with families in an empathetic,
timely, and sensitive manner is particularly effec-
tive to decrease tension, uncertainty, and distress
(Zaforteza et al., 2005). Offering systematic, inte-
grated, relevant information provides guidance to
family members. Relevant information includes the
nature of the illness, prognosis, treatment options,
potential complications, care needs after discharge,
and alternatives to continued treatment (Nelson,
Kinjo, Meier, Ahmad, & Morrison, 2005). In addi-
tion, Chien et al. (2006) note the importance of
communicating specific facts regarding a client’s
progress and expected outcomes, exploring family
feelings including guilt and anger, informing family
members of what was to be done for the client and
why, and providing suggestions to families about
actual care they could provide at the bedside to
support the patient and help reduce family anxiety
(Chien et al., 2006).
Family members find communication from a
variety of providers to be worthwhile when health
care providers are perceived as sensitive, unhurried,
and honest, and use understandable language
(Nelson et al., 2005). Furthermore, follow-up with
written verification of information that was shared
verbally at patient care conferences was found to
be effective in promoting family coping (Kleiber,
Davenport, & Freyenberger, 2006; Lautrette et al.,
2007). Chien et al. (2006) have determined that con-
ducting a family needs assessment and subsequent
systematic education in response to identified issues
is an effective means by which to facilitate both
patient and family health.
Family-nurse communication is crucial during
the hospital stay. Because families are key members
of the health care team and will be the primary
provider of care once the patient leaves the acute
setting, addressing the family’s educational and in-
formation needs is a critical part of the discharge
process.
Family Needs During Discharge
Families and patients are excited about leaving the
hospital. For some, however, it is a time when anx-
ieties and uncertainties are high; families worry
about their loved one not receiving the round-the-
clock care available in the hospital. Adverse and
poor outcomes are associated with poor transitions,
specifically, with problems in continuity of care and
caregiver burden (Coleman, Parry, Chalmers, &
Minn, 2006). Readmission rates to hospitals were
at an all time high, but have been noted in the last
2 years to have decreased slightly from 19% to
18.4% nationally. It is not clear what the cause of
this improvement is (American Hospital Associa-
tion, 2013). It is believed that approximately 75%
of these readmissions may have been preventable
(Medicare Payment Advisory Commission, 2009).
Clearly, involving family in discharge planning is
crucial for a smooth transition of care.
Families worry about adding the home caregiver
role to their already overburdened load of family
responsibilities. In fact, families coping with mem-
bers with traumatic brain injuries reported forget-
ting what they were taught about what to expect,
what resources were available to them, and experi-
enced confusion in the home setting (Paterson
et al., 2001). These families actually participated in
extensive discharge planning and teaching, yet their
severe anxiety inhibited their learning. The families
told of not being able to hear the conversations
during the care conferences, because they were so
worried about how they were going to manage at
home. Other families shared that they were so
overwhelmed with the complexity of the situation
and the health care system that they could not pay
attention in the conferences (Paterson et al., 2001).
Nurses should facilitate discharge care confer-
ences and help families transition smoothly to pro-
viding care in the home environment. In today’s
health care environment, families are often caring
for very ill family members at home before they are
fully recovered and ready to assume their normal
family roles (Bjornsdottir, 2002; DesRoches,
Blendon, Young, Scoles, & Kim, 2002). Families
are providing nursing care at home that is tradition-
ally done by nurses in the hospital, such as assisting
with ambulation, transfer, wound care, medication
administration, and, in some cases, operating high-
tech equipment. Hooyman and Gonyea (1999) call
this the “informalization of health care.”
444 Nursing Care of Families in Clinical Areas
3921_Ch14_433-476 05/06/14 11:17 AM Page 444
The importance in providing a comprehensive
discharge plan cannot be overemphasized. Dis-
charge planning should begin when the person is
admitted to the acute care setting by anticipating
and identifying the patient’s continuing needs. A
comprehensive plan should include, at minimum,
the following: what to do when the person gets
home, how to do it, and what to look for and do
when a problem develops. In addition, the plan
should include instructions about who will follow
the care of the client in the outpatient setting and
a follow-up appointment, if possible. The plan
should also contain referrals to other care providers
in advance of discharge. Review client management
plans with families daily and update progress to-
ward discharge with the family. Discuss possible
needs the family will need to address in the home
once the family members arrive there.
Given today’s concern over health care costs,
nurses can play a key role in helping patients
maintain optimal health, and discharge planning
is one key component. Interestingly, a study pub-
lished in the New England Journal of Medicine
(Jencks, Williams, & Coleman, 2012) found that
about one-fifth (19.6%) of Medicare beneficiaries
were readmitted to the hospital within 30 days of
discharge and over one-third (34%) were readmit-
ted within 90 days. About one-half (50.2%) of
nonsurgical hospital patients who were readmitted
within 30 days did not visit a physician. The study
also found that when readmitted to the hospital,
these patients stayed an average of 0.6 days
(13.2%) longer than those patients admitted the
first time for the same problem.
As the coordinator of care, nurses can facilitate
the planning of care before the patient is dis-
charged. Establishing guidelines so that every
patient has a medical appointment before discharge
is essential. Nurses can make sure that patients have
the correct discharge medications and receive a suf-
ficient amount to last them for a few days. Compar-
ing discharge medications to those medications the
patients normally take at home should be part of the
discharge planning. It is not unusual for a patient’s
medication list at discharge to be different from the
medication list before admission. Unfortunately,
these changes often are not conveyed to the pa-
tient’s primary doctors. Sometimes patients end up
taking medications from both lists or they take du-
plicate medications because these medications have
different brand names (Alonso-Zaldivar, 2012).
Recently, hospitals have been using transition
coaches to help reduce hospital readmission by tar-
geting population groups that have a higher hospital
readmission rate. These programs vary but the cen-
tral tenet is to begin discharge planning while the
patient is hospitalized and continue with intensive
postdischarge care. Often, nurses assume the role
of the transition/hospital coach. Research has
demonstrated that a multicomponent intervention
program—which includes early assessment of the
patient’s discharge needs, enhanced patient educa-
tion and counseling, and early postdischarge follow-
up care—is associated with reduced readmissions,
particularly among older patients and those with
heart failure (Coleman et al., 2006; Osborne, 2011).
Family Interventions at Discharge
Follow-up conversations with families indicate that
discharge by a nurse who has been trained in tran-
sition care helps support families (Coleman et al.,
2004). One in four Medicare patients returns home
with an unmet need for an existing or new activity
of daily living (DePlama et al., 2012), which is
known to increase readmission rates. Therefore, it
is crucial that nurses work with patients and fami-
lies not only to address the medical discharge reg-
imen, but also to include education or resources for
how to manage the new or existing activity of daily
living need, such as dressing, cooking, toileting,
transportation, eating, or mobility.
In fact, patient discharge is an area that has been
studied for decades. It has come more into the
spotlight with the current focus in the United
States on reducing health care costs and client mor-
bidity and mortality rates by reducing hospital
readmission rates. Health care systems are creating
transition care programs. As a part of these pro-
grams, one intervention is to have family care tran-
sition conferences, which entail discussion on the
physical care of the patient, ways to assist the family
to adjust to having an ill or recuperating family
member at home, and barriers to providing care at
home. Concepts to include in this discharge family
conference are listed in Box 14-1. Other interven-
tions include interprofessional follow-up teams,
nurse navigators, and less formalized telephone and
e-mail tracking.
In a concerted effort to reduce hospital readmis-
sion rates of high-risk adults—defined as ones being
discharged on 10 or more medications, having three
Family Nursing in Acute Care Adult Settings 445
3921_Ch14_433-476 05/06/14 11:17 AM Page 445
termed nurse navigator. Nurse navigators are edu-
cated in a specific area of nursing and in the hos-
pital system, such as working with clients who have
heart failure or working with clients who have
cancer. They meet with patients and families, con-
duct client and family education, advocate on their
behalf by helping ensure clear communication be-
tween the client/family and their health care team,
conduct medication reconciliation, and help them
transition from one setting to another, such as ar-
ranging for home visits with community health
nurses (Aston, 2013). Some nurse navigators work
closely with families and clients in clinic or physi-
cian offices and follow clients and families into in-
patient settings and back home (Case Management
Advisor, 2013).
The San Francisco Medical Center experienced
a 46% drop in its readmission rates for heart failure
patients over 3 years when it instituted a multi-
pronged approach to working closely with patients
and family during hospitalization and follow-up
after discharge (Hospital Case Management,
2013b). Two nurse coordinators (navigators) met
with clients and families for approximately 15 to 20
minutes each day during hospitalization to ensure
that they understood their care needs and to work
on discharge education. They followed up with
families and clients via phone calls. In addition,
they redesigned their patient educational materials
from a health literacy perspective.
Telephone and e-mail follow-up care provided by
nurses have been found to improve treatment and
outcomes by developing communication and educa-
tion, improving symptom management, and assisting
with early recognition of complications (Mistianen
& Poot, 2006). A Cochrane systematic review of fol-
low-up phone calls or e-mails to clients recommends
that these interventions should, at a minimum, in-
clude knowledge about the illness; postoperative or
medical complications; self-care, including behav-
ioral and lifestyle changes; and psychosocial evalua-
tion and emotional support (Furuya et al., 2013).
END-OF-LIFE FAMILY CARE
IN THE HOSPITAL
A different type of transition that occurs in the hos-
pital is from life to the death of a loved one. Regard-
less of whether the death occurs in the ICU, the
446 Nursing Care of Families in Clinical Areas
BOX 14-1
Addressing Family Needs During Discharge
Conference
It is important to talk about the physical care of the family
member who is being discharged home and to work
with the family on its specific needs. The following points
are examples of items to cover with family at discharge:
■ Discuss when the family member can be left alone
and for how long.
■ Help family set up an emergency call system.
■ Discuss concerns about modifying the home
environment.
■ Facilitate setting up a family routine of care.
■ Be sure the family knows when to call for help.
■ Help the family learn to handle visitors, especially
children.
■ Talk about the balance of sleep and rest for the family
caregivers.
■ Provide names and numbers for personnel in the
billing department for the family members to call when
they start to receive insurance forms and hospital bills.
chronic illnesses, and having been hospitalized at
least twice in the last year—researchers designed
an intervention, that begins even before discharge,
with a follow-up interprofessional team (Hospital
Case Management, 2013a). The team discusses the
case and different members work to ensure that by
discharge, clients and family members understand
their medications, have follow-up appointments,
and order any post–acute care services. The team
makes follow-up phone calls to discuss care and any
concerns for up to 30 days after discharge. Out-
comes of this intensive program are still being de-
termined; it is a future step in helping families care
for loved ones in the home.
Specifically, nurses conducting a follow-up care
phone call should address the following information:
■ The client’s health status since discharge and
any changes that may have occurred
■ Whether or not the client is taking medica-
tions correctly or following the recommen-
dations for care correctly
■ The need for, or the status of, follow-up visits
■ What to do when or if a problem arises
The nurse should thoroughly document the call.
Another intervention to help adults and families
in the acute care setting is the creation of a position
3921_Ch14_433-476 05/06/14 11:17 AM Page 446
emergency department, or on the medical-surgical
unit, families are challenged by the death of a family
member. For a detailed discussion of how to work
with families in palliative and end-of-life care, refer
to Chapter 10. This section is specific to working
with adult patients and their families at the end of
life in the acute hospital setting and includes discus-
sion of advance directives, family-witnessed CPR,
do not resuscitate orders and situations, withhold-
ing or withdrawing life sustaining procedures, and
organ donation.
One main component of patient and family ex-
perience—and one with which many families have
expressed dissatisfaction—of hospital end-of-life
care is management of care before death. Factors
contributing to dissatisfaction included patient
suffering and pain and lack of communication
with the family (Clark et al., 2003). Part of the
reason for this dissatisfaction is that health care
professionals, particularly nurses, are uncomfort-
able caring for and communicating with the dying
patients. Nurses expressed discomfort when
speaking with families and patients about death
and felt ill-prepared in this task (Lloyd-Williams,
Morton, & Peters, 2009). As a result, nurses tend
to distance themselves from the patients and en-
gage only in practical tasks, where they are most
comfortable (Shorter & Stayt, 2010), thereby
missing opportunities to facilitate interactions
with the family (Curtis et al., 2005). Hospitals
need to provide educational opportunities for
nurses so they will have the knowledge and skills
to plan and deliver end-of-life care (Efstathiou &
Clifford, 2011).
Mixed messages pertaining to end-of-life is-
sues commonly arise in the acute care setting. Pa-
tients and families hear and see numerous health
care professionals. They receive conflicting and
divergent information and opinions so that it is
challenging for them to understand the care plan,
thus compromising the quality of end-of-life care
(Beckstrand & Kirchhoff, 2005). Because nurses
spend the most time with the patient, they are in-
strumental in gathering the team players together
to provide clarity for the patient and the family
(Puntillo & McAdam, 2006). Identifying the needs
of the patient and the family can help nurses di-
rect end-of-life care. Researchers (Heyland et al.,
2006) have found that patients and families have
a number of similar needs, along with their own
individual needs. Both patients and families
ranked three most common needs:
1. Trust and confidence in the doctors
2. Not to be kept alive on life support when
there is little hope for a meaningful recovery
3. Information about the disease communicated
by the doctor in an honest manner
Following these three common needs, the dying
patients hoped to resolve conflicts and say goodbye
to friends and family. For the family, the fourth
major need was to find and obtain services to help
them with patient care following discharge should
the patient be allowed to go home to die (Heyland
et al., 2006).
Informing family members about what is most
important to the dying patient requires commu-
nication between these two groups, and nurses can
be instrumental in facilitating these discussions.
For example, families sometimes prefer not to tell
the patient she is dying because they fear that the
patient will lose hope. Yet patients want to resolve
personal issues before they die (Heyland et al.,
2006). Therefore, it is important to assess the per-
sonal wishes of the dying patient and to facilitate
open discussion between the patient and the fam-
ily members. Compassionate communication pro-
vides crucial care to families as they are asked to
make multiple decisions during the dying of their
loved ones in the hospital. The more the nurse
knows about the family, the better. The way a
family deals with death is affected by cultural
background, stage in the family life cycle, values
and beliefs, and nature of the illness. Whether the
loss is sudden or expected, the role played by the
dying person in the family and the emotional
functioning of the family before the illness also
influence the family needs and reactions to the
situation (Artinian, 2005).
Offering and providing emotional support to
families of dying patients is one way of meeting
the needs of the family. Being at the bedside, pro-
viding comfort, and offering a listening ear
demonstrate that families are not dealing with the
grieving process alone (Bach, Ploeg, & Black,
2009). Providing for privacy allows families emo-
tional and physical intimacy. Of utmost concern
to family members is to be reassured that the
nurse is keeping their loved one comfortable, as
pain free as possible, and is continuing to provide
Family Nursing in Acute Care Adult Settings 447
3921_Ch14_433-476 05/06/14 11:17 AM Page 447
comfort nursing care (Artinian, 2005). Keeping
the family informed through anticipatory guid-
ance of the physical signs and symptoms they are
likely to see is important. Giving family members
the option to be present or excused during the
actual death is compassionate caring. Ask the fam-
ily members whether they have any special spiri-
tual or religious rituals and ceremonies that need
to be conducted at this time. For many families,
spirituality provides immense comfort while for
the patient, it is an essential element in creating a
peaceful death (Kruse, Ruder, & Martin, 2007).
Most hospitals have various religious services
available that can be called in to help the dying
patient and their family. After the death, it is im-
portant to allow enough time for questions, allow
the family the opportunity to view the body, and
describe the events at the time of death (Artinian,
2005). Offering families the choice to participate
in after-life preparations, such as bathing the
body, is providing culturally sensitive care.
Caring for families when a member is dying is
not easy. It is challenging for nurses to help families
cope. Rarely do nurses in most acute care settings
feel comfortable and confident discussing death
with patients or families. Several issues are espe-
cially difficult for nurses and families, and are
covered in more detail below.
Advance Directives
The Patient Self-Determination Act passed in 1991
in the United States requires hospitals to ensure
that patients have been informed of their right to
decide whether or not, and to what degree, to par-
ticipate in life-preserving measures (Artinian,
2005). This legislation stimulated a host of docu-
ments related to end-of-life choices, such as ad-
vance directives, living wills, durable power of
attorney for health care, do not resuscitate (DNR)
orders, and physician orders for life-sustaining
treatment (POLST). Box 14-2 defines each of these
documents. Despite this legislation, the actual
completion rate of such directives among the U.S.
population remains low, with an average comple-
tion rate of 20% (Duke, Thompson, & Hastie,
2007; Ko & Lee, 2013).
When queried as to why people did not com-
plete advance directives either before or at the
beginning of a hospital stay, many state that they
find talking about their own mortality difficult
(Golden, Corvea, Dang, Llorente, & Silverman,
2009). The barriers to completion that have been
identified by individuals and families also include
lack of knowledge, confusing language, complexity
of process, and procrastination (Butterworth,
2003). Moreover, the timing of completion of
448 Nursing Care of Families in Clinical Areas
BOX 14-2
Documents Related to End-of-Life Choices
Advance directive: A legal document that a compe-
tent person completes. It specifies instructions
regarding medical care preferences regarding inter-
ventions or medical treatments, such as termination
of life support or organ donation, the individual
would like in the event he or she is incompetent
to make such decisions. The purpose is to reduce
confusion and disagreement. Typically, the advance
directive includes the name of the person who is
the durable power of attorney for health care.
Living will: A legal document that specifically outlines
medical treatments and interventions that the person
does or does not want administered when the per-
son is terminally ill or in a coma and is unable to
communicate personal desires.
Durable power of attorney for health care: A legal
document that designates an individual to act
as a health care proxy or agent, to make medical
decisions in the event that a person is not able to
communicate his or her own choices or make his
or her own decisions.
Do not resuscitate (DNR) order: A request not to
have cardiopulmonary resuscitation in the event
one’s heart stops. This order may or may not be part
of an advance directive or living will. A physician can
put this order in a client’s chart for that person.
Physician orders for life-sustaining treatment
(POLST): A form (not a legal document) that states
what kind of medical treatment patients want
toward the end of their life. It is signed by both
the patient and the doctor or nurse practitioner.
This form documents the end-of-life conversation
between the patient and his or her health care
provider. POLST gives seriously ill patients more
control over their end-of-life care. It is typically
written on bright-colored (pink) paper.
3921_Ch14_433-476 05/06/14 11:17 AM Page 448
advance directives on admission to the hospital is
fraught with emotion and distraction (Johnson,
Zhao, Newby, Granger, & Granger, 2012). In
addition, culture has been found to be a barrier to
the completion of advance directives (Volandes,
Ariza, Abbo, & Paasche-Orlow, 2008).
Of those individuals who completed advance di-
rectives, they reported doing so because they did
not want to be a burden on their family at the time
of death and because they had significant health
problems over which they wanted to exercise some
control (Duke et al., 2007). A signed advance di-
rective implies that families have engaged in dis-
cussions about end-of-life choices. These families
reported experiencing less of a burden when faced
with making end-of-life decisions (Kaufman, 2002).
Patients who have family members involved in
their care in the hospital were found to be more
likely to have a DNR order written (Tschann,
Kaufman, & Micco, 2003).
Although the ANA’s Code of Ethics for Nurses
contains provisions about every patient’s right to
self-determination (American Nurses Association,
2001), many nurses fail to discuss advance directives
with their patients (Duke & Thompson, 2007).
There could be several reasons for this failure. First,
nurses have expressed that they need more educa-
tion about the state laws that govern advance di-
rectives and both legal and ethical issues that
surround advance directives (Duke & Thompson,
2007; Jezewski, Meeker, & Robillard, 2005). Jarr,
Henderson, and Henley (1998) noted that there was
a relationship between nurses’ level of knowledge
on advance directives and their comfort level in dis-
cussing this topic with their patients. Nurses who
lacked knowledge were more likely to state that they
did not discuss advance directives with their patients
and that they did not view this task as part of their
professional role. Second, nurses generally feel un-
comfortable discussing death and dying with their
patients. This can affect nurses’ willingness to talk
to patients about subject matters that relate to dying
(Duke & Thompson, 2007; Stoeckle, Doorley, &
McArdle, 1998). And third, many nurses in the
acute care setting witnessed patients with advance
directives having their expressed wishes overridden
by physicians and/or family members (Duke &
Thompson, 2007; Tammelleo, 2000). For these
nurses, having an advance directive did not even
guarantee that patients’ wishes were going to be
followed.
The studies above have implications for the
nurse and the patient. Evidence-based practice re-
quires that nurses assist patients in end-of-life de-
cisions (Browning, 2006). Nurses can play a key
role in providing information about advance direc-
tives and encouraging discussion between patients
and families about end-of-life care (Kelley, Lipson,
Daly, & Douglas, 2006). Sometimes a patient may
not be willing to talk about death, but the nurse can
broach this topic by asking the patient her thoughts
about the future. This may help the patient talk
about her wishes (Gamble, 2008).
Nurses can also clarify and review treatment op-
tions as well as discuss when these may be initiated
and when they could be discontinued. Other pos-
sible topics that may be a concern for the patient
include feeding, hydration, ventilator support, pain
management, and resuscitation measures (Ryan &
Jezewski, 2012). The nurse should encourage
other members of the health team to provide clar-
ity in finalizing patients’ advance directives (Haras,
2008). These team members may include the so-
cial worker, the chaplain, the psychologist, and/or
the physician.
Family Presence During
Cardiopulmonary Resuscitation
For many years it was standard practice of both
ICUs and emergency departments that family
members be removed from the bedside during pe-
riods of cardiac arrest, and emergent and invasive
procedures. That trend is gradually changing. An
increasing number of critical care units and emer-
gency departments allow (but do not put pressure
on) family members to remain present at the pa-
tient’s bedside no matter what. This changing
trend is due in large part to the work of clinical re-
searchers who, after 20 years of research, have
found that family presence does not disrupt patient
care and actually results in positive outcomes for
both family members and patients (Compton et al.,
2011; Tweibell et al., 2008). The Emergency
Nurses Association (2005) and the American Asso-
ciation of Critical Care Nurses (2004) have issued
position papers calling for the establishment of
written hospital policies and standards allowing for
the option of family presence during invasive and
resuscitation procedures in critical care units.
If family members wish to remain at or return
to the bedside while resuscitation efforts are still
Family Nursing in Acute Care Adult Settings 449
3921_Ch14_433-476 05/06/14 11:17 AM Page 449
ongoing, a nurse should be assigned who counsels
and coaches families members, so that each person
can anticipate exactly what he or she will see and
hear (MacLean et al., 2003). It is possible to allow
family members to be physically close to their loved
one, so they can speak into an ear, as well as touch
the person. Careful and often repeated explanations
are necessary by the health care providers, because
these are stressful and busy times for all present.
Nurses need to be assessing continually how fam-
ily members are coping and be prepared to inter-
vene as necessary. Research has demonstrated that
nurses are learning to provide more information
and comfort to families and patients during times
of invasive procedures, including resuscitation ef-
forts (MacLean et al., 2003; Rushton et al., 2007).
Family Involvement in Do Not
Resuscitate Orders
Handy, Sulmasy, Merkel, and Ury (2008) investi-
gated the experience of surrogate decision makers—
durable power of attorney or next of legal kin—who
are involved in authorizing DNR orders. These
individuals described this experience as a process,
as a cascade of decisions and negotiations, not just
a single decision not to resuscitate. One of the es-
sential elements of this process was honest, sensi-
tive, ongoing communication with the health care
team. The surrogates reported a dichotomy of
emotions about feeling guilty if they authorized
the order and guilty if they did not authorize the
order. In the end, the surrogates reported that
knowing they were alleviating their loved one’s
pain was crucial in their decision making. The de-
cision-making process of determining to authorize
a DNR order has some similarity to the family
decision whether to withdraw or withhold life-
sustaining therapies.
A study of 122 women with gynecological can-
cers uncovered preferences for end-of-life choices.
This study indicates that these women would like
end-of-life discussions to occur as a routine part
of their care, but they would like the discussion to
be initiated by their providers (Díaz-Montes,
Johnson, Giuntoli, & Brown, 2013). Patients re-
port that they would like these discussions as they
desire to have an opportunity to prepare for the
end of their lives (Steinhauser et al., 2000). These
end-of-life preparations included assigning some-
one to make decisions, arranging financial matters,
knowing what to expect as their health status
declines, and preparing written preferences for
management of their end-of-life care. The most
important factors regarding end-of-life care to pa-
tients included trust in the treating physician,
avoidance of unwanted life support, effective com-
munication from the physician regarding disease
status, and the ability to prepare for the end of life
(Heyland et al., 2006).
Family Experiences of Withdrawing or
Withholding Life-Sustaining Therapies
Families are intricately involved in the decisions to
withdraw or withhold life-sustaining therapies
(LSTs). These types of decisions are complex and
occur in phases (Tilden, Tolle, Nelson, & Fields,
2001): (1) recognition of futility (that the survival
was unlikely to occur), (2) coming to terms (that
the person was likely going to die), (3) shouldering
the surrogate role (accepting the responsibility for
making decisions for their loved one), and (4) fac-
ing the question to withdraw or not withdraw
LSTs (discussing and thinking about all the options
surrounding stopping interventions that are sus-
taining their loved one’s life). Factors that influ-
enced families to withdraw LSTs were poor quality
of life, poor overall prognosis, and current level of
the family members’ suffering (Wiegand, 2006). In
families where there was a signed advance directive
of some type or where previous conversations oc-
curred about end-of-life choices, this difficult fam-
ily decision was less of a burden.
Wiegand, Deatrick, and Knafl (2008) conducted
research to describe the different family manage-
ment styles when faced with making decisions
about withdrawing or withholding LSTs. The five
family management styles described are progress-
ing, accommodating, maintaining, struggling, and
floundering. Table 14-2 illustrates how families
differ in their approach to making this crucial
family decision. Families were found to vary in the
following areas:
■ Their level of understanding of the severity
of their loved one’s illness
■ Their level of hope for recovery
■ The tense (past, present, or future) with
which they talked about their family member
■ Their willingness to engage in a discussion
about possibly withdrawing LSTs
■ The overall family communication
450 Nursing Care of Families in Clinical Areas
3921_Ch14_433-476 05/06/14 11:17 AM Page 450
Family Nursing in Acute Care Adult Settings 451
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3921_Ch14_433-476 05/06/14 11:17 AM Page 451
■ The prevalence of facts or emotions in making
the decision
■ The actual decision to withdraw LSTs
Culture has also been shown to influence family
consideration of withdrawing LSTs. For example,
African Americans are more likely to continue
futile therapies (Hopp & Duffy, 2000).
Family presence during CPR also influences de-
cisions to withdraw LSTs. Tschann et al. (2003)
compared the prevalence of decisions to withdraw
LSTs when families were present and when fami-
lies were not present. Over a set period of time
where withdrawal was considered by the health
care team to be appropriate, they found that
patients were more likely to be removed from me-
chanical ventilation if the family was present than
if the family was not present. Furthermore, when
families were involved in their loved one’s care and
present during the dying process, patients were
more likely to have their health care provider order
medications that would alleviate their suffering,
such as narcotics or an antianxiety medication. In
all situations, families work collaboratively with the
health care team to determine when and how to
withdraw LSTs.
It is important for families to be informed early
about death, well before the final decision is made
to withdraw life support. Doctors were found to
prolong the withdrawal of life support systems
to accommodate the needs of the families, which
resulted in families’ higher level of satisfaction
(Gerstel, Engelberg, Koepsell, & Curtis, 2008).
But in doing so, physicians felt that patients did
not benefit from this prolongation because it
caused nonbeneficial and sometimes painful ther-
apies. In fact, the lack of communication between
physicians and families caused slower decision
making by families. If families are alerted to the
possibility of the patient’s death earlier in the hos-
pital stay, when the indication for withdrawal is
finally made by the physician, the families will be
better prepared. Given that most deaths in critical
care occur within 4 hours of withdrawal of treat-
ment, this short time period does not allow for
families to prepare for death. This short time
frame puts an enormous demand on nurses as they
attempt to provide palliative care for the patient
and the bereaved family (Efstathiou & Clifford,
2011; Neuberger, 2003).
Hsieh, Shannon, and Curtis (2006) analyzed
51 family conferences with the health care team
in the decision-making process to withdraw
LSTs. Their insight into this emotional process
for these families offers nurses ideas about how
to help support families during this difficult time.
They identified five contradictory arguments that
families often talked about during these family
conferences:
■ If the family believed that its decision to
remove LSTs was actually killing the loved
one versus allowing him to die a natural death
■ If the family’s decision was viewed as a bene-
fit by alleviating suffering or by eliminating
a burden on the family
■ If the family was honoring its loved one’s
end-of-life choices or following its own
personal wishes
■ If the ill family member expressed several
differing end-of-life choices, the family had
to work through which one to follow
■ Determining whether one family member
would be responsible for making the final
decision or the family as a whole would make
the decision
Regardless of which of these contradictions fam-
ilies discussed during the conference, information-
seeking strategies used by the health care team
members were found to facilitate these difficult
emotional discussions. Some of these information-
seeking strategies included acknowledging the
contradictions, clarifying views of each person in-
cluding the patient who was not present, bringing
the conversation back to the point that all family
members wanted to help their loved one, and reaf-
firming their choices even if the health care team
did not agree with them.
Once a family has reached a decision to with-
draw LSTs, nurses work closely with family mem-
bers to guide them through this difficult procedure.
A trusting nurse-family relationship is crucial to the
family (Wiegand, 2006). The following nursing ac-
tions help prepare the family (Kirchhoff, Palzkill,
Kowalkowski, Mork, & Gretarsdottir, 2008):
■ Telling the family that the exact time of death
cannot be anticipated, but that the nurse will
be monitoring the situation and informing
them when death appears more imminent.
■ Assuring the family that the nurse will con-
tinue to provide compassionate comfort care.
■ Giving each family member a choice to
watch the actual withdrawal of the therapies.
452 Nursing Care of Families in Clinical Areas
3921_Ch14_433-476 05/06/14 11:17 AM Page 452
■ Providing for physical and emotional intimacy
needs of the family.
■ Informing the family of expected signs and
symptoms it may see during the active dying
process.
■ Encouraging or giving permission for the fam-
ily to hold, touch, caress, lie with, talk to, and
show emotion to the dying family member.
Nurses need to make every effort to keep families
involved and informed as death approaches. Provid-
ing the ideal level of privacy is not always possible
in ICU environments, but every effort needs to be
made to allow for families to be with their loved
ones, and to remain with their hospitalized family
members in a private, unhurried, and quiet environ-
ment. Many families and cultures have rituals or
spiritual beliefs and procedures that need to be hon-
ored. Resources such as Chaplaincy Services and
Social Work can offer assistance, especially when
death is approaching. Nurse managers need to re-
lieve bedside nurses from responsibilities of caring
for other patients, so that they can remain with fam-
ilies and patients who are dying.
Offering the Option of Organ Donation
The number of people who need organs far ex-
ceeds the number of donors. In the United States,
121, 278 people are waiting for a donor organ
(Organ Donor, 2014). Each day 79 people receive
an organ transplant and 18 people die because an
organ was unavailable (Organ Donor, 2014). Between
January and November of 2013 there were 26,517
transplants from 12,994 donors (United Network
for Organ Sharing, 2014). It has been shown that
when the family knows of a loved one’s intent to
donate his or her organs, there are higher rates of
donation than when the family is not aware of the
loved one’s intent (Smith, Lindsey, Kopfman, Yoo,
& Morrison, 2008).
Discussing organ donation with a family whose
loved one has suddenly died or with whom the
decision has been made to withdraw LSTs is dif-
ficult. The discussion about organ donation
should take place separately from the notification
of the family member’s death, and it should be
done by someone who has been specifically
trained in asking for organ and tissue donation
(Artinian, 2005). Federal regulations now stipu-
late that hospitals are required to contact their
local Organ Procurement Organization (OPO)
concerning any death or impending death (Truog
et al., 2001). Once contacted, the OPO sends a
representative, or a local hospital representative
will approach the family at the appropriate time
about the option of organ donation and answer
questions.
If organ donation is viewed as a consoling act,
the option to elect organ donation is easier for the
family (Artinian, 2005). Organ donation benefits
the donor family, as well as the recipients and their
families. Families reported that knowing that the
organ of their loved one helped someone else, that
a positive came out of a negative, and their family
member lives on in someone else helped them cope
with their loss (Artinian, 2005).
Many families worry that donation is disfiguring
or will delay the funeral, but neither of these wor-
ries is valid and nurses should reassure families on
these points. The body is not disfigured in the
process of removing the organs. If the body parts
that are removed have the potential to disfigure the
person, replacement plastic or wooden parts are
inserted in the place of those removed so that the
person is not disfigured. The organ donation
team has a rapid response; therefore, the funeral
arrangements are not delayed.
The donor family does not pay for the medical
expenses once death has been declared; the costs
are paid by the OPO and the recipients. The
donor family receives a letter from the OPO in-
forming it of the number of people who received
organs from the deceased family member. After
time, the donor family can contact the OPO to
find out whether the recipient of the organs is
interested in corresponding and meeting.
Family Nursing in Acute Care Adult Settings 453
Case Study: Howe Family
This case study presents a family dealing with an acute
exacerbation of a longstanding chronic illness and
hospitalization of one of its members. The Family Assess-
ment and Intervention Model is used as the theoretical
approach to the Howe family (refer to Chapter 3 for
specific details of this family nursing theory and model).
The Howe family genogram and ecomap are presented
in Figures 14-1 and 14-2.
Glenn Howe, a 64-year-old married white male, had his
first major myocardial infarction at age 41. Since that time,
(continued)
3921_Ch14_433-476 05/06/14 11:17 AM Page 453
454 Nursing Care of Families in Clinical Areas
he dutifully embraced numerous lifestyle changes, includ-
ing smoking cessation, diet modifications, and the estab-
lishment of a regular exercise regimen. In addition, he
began to take numerous cardiovascular medications to
control his blood pressure and enhance his cardiac func-
tion. Despite his adherence to his chronic disease manage-
ment program, Glenn’s cardiovascular disease worsened,
and he underwent coronary artery bypass surgery 10 years
ago. Initial results of the surgery were positive, and Glenn
continued to manage his chronic illness well. Recently,
however, he experienced another small myocardial infarc-
tion, after which his cardiac function declined drastically.
As a result, physicians increased his medications, recom-
mended more severe lifestyle modifications, and dashed
his hopes for recovery.
Glenn’s immediate family consists of his wife, Jane,
three children—Anne, age 37; Janet, age 35; and Bill, age
32—and six young grandchildren. Glenn is currently retired
while Jane continues to work as a special education teacher.
All family members are upper middle class and attend an
Episcopal Church regularly. All family members are geo-
graphically and emotionally close to Glenn, and are quite
concerned that he may not survive much longer. Since his
first myocardial infarction, the family members have lived
their lives in a state of anxiety, feeling as if their time with
Glenn is likely to be limited, as if they are on “borrowed
time.” This anxiety has resulted in a number of benefits for
the family: numerous family vacations, all holidays together,
and the perspective that every chance to be together is
special. After Glenn’s most recent decline in cardiac function,
the family experienced a heightened sense of preciousness,
wanting to spend as much time as possible together and
wanting every moment with Glenn to be perfect.
Before his first myocardial infarction, Glenn was a
healthy, robust, active man with many interests and
hobbies. After his cardiac surgery, many of his hobbies,
3 yr5 yr
16 yr
4 yr7 yr10 yr
Retired refinery worker
End-stage CHF
In hospital
School teacher
Psychologist
Stay-home
mom
Refinery
worker
ICU
nurse
Sales
manager
M 1996
M 1996 M 1999M ’94/S ’99
Jane
61 yr
Glenn
64 yr
Steve
37 yr
Joe
39 yr
Anne
37 yr
Janet
35 yr
Karen
30 yr
Bill
32 yr
FIGURE 14-1 Howe family genogram.
3921_Ch14_433-476 05/06/14 11:17 AM Page 454
Family Nursing in Acute Care Adult Settings 455
including golf, fell by the wayside. He became increasingly
short of breath with exertion and resorted to armchair hob-
bies, such as coin collecting, crossword puzzles, and world
history. Family activities changed as well. Family vacations
necessarily became sedate and wheelchair oriented, rather
than activity-oriented hiking, fishing, and camping trips. The
family endeavored, however, to have at least one very spe-
cial trip every year, the last two being a trip to Disney World
with Glenn in a wheelchair and a cruise that required very
little exertion.
Glenn became more and more debilitated. His cardiac
function was so poor he could not eat without becoming
short of breath and tachycardic. His appetite decreased dra-
matically, and he lost more than 60 pounds. He began to
suffer from orthopnea and often tried to sleep upright in his
recliner all night. As he and Jane tried to cope with his acute
and chronic health care needs, their relationship changed.
She became a full-time caretaker, trying anything she could
to get him to eat and to make him comfortable. A normally
unflappable individual, she found herself expressing her
frustration at his refusal to eat more than a few bites at a
time. Her outbursts were distressing to her and her children
because they were so out of character. Glenn, usually a
more demanding individual, became compliant and re-
signed as his health deteriorated. The children became hy-
pervigilant and attentive to their parents, making frequent
visits on weekends and calling every day. Family roles
changed as the stressors affecting the family intensified.
Glenn had been hospitalized on numerous occasions,
and he approached the impending admission to a medical-
surgical unit with his usual calm and trust in his caregivers.
He was being admitted for tests because his ventricular
function had decreased, his weight had decreased from
200 to 140 pounds, and his urine output was declining.
He called his oldest daughter, Anne, a cardiovascular inten-
sive care nurse, the morning of his scheduled admission
and asked her to meet him at the hospital. She replied that
she had to travel out of town for an important meeting but
would drive up later that night and be with him for the
(continued)
Jane’s work
Medicaid/
Medicare
Travel to
hospital
Extended
family
Family
physician
Hospital
chaplain
Hobbies
Hospital
Hospital
intensivist
JH
SK AK MB JB BH
THKKCKAK
KH
KH
GH
Strong
relationship
Weak
relationship
Tense
relationship
Direction of
energy flow
Church
Friends
Nurses on
cardiac floor
FIGURE 14-2 Howe family ecomap.
3921_Ch14_433-476 05/06/14 11:17 AM Page 455
456 Nursing Care of Families in Clinical Areas
tests the next day. The other children counted on the old-
est child to take care of health care needs, and because of
her education and experience, it was a role she gladly
assumed.
Given the chronic nature of Glenn’s cardiovascular
disease and the life-threatening potential for acute exacer-
bations requiring frequent hospitalizations, Jane and Glenn
had discussed advance directives openly and honestly.
Jane was well aware that Glenn did not wish for any heroic
measures, especially CPR. He felt that his two cardiac
surgeries were trauma enough and that his heart condition
was irreparable. Jane was terrified of losing her husband,
best friend, and companion, and was very concerned
about having to make the decision that would honor
Glenn’s wishes.
During this hospital stay, Glenn and Jane renewed
their close and trusting relationship with the nurses at
their small community hospital. While awaiting his tests
and the arrival of their daughters, Glenn experienced a
lapse in consciousness with Jane at his bedside. Jane
called for help, and two nurses entered the room and
quickly assessed the situation. Glenn was in full cardiac
arrest. One of the nurses turned to Jane and said, “Do
you want us to bring him back? We can bring him back.”
Jane hesitated, then shook her head no. The nurse asked
again, “Are you sure? Do you want us to bring him back?”
Once again, Jane answered, “No.” She immediately
realized the consequences of her decision to deny CPR.
Glenn, her husband of 45 years, was gone; her children
did not expect this hospitalization to result in his death;
and she was alone at his bedside.
Jane experienced regret for her decision not to “bring
him back.” Her decision was so very final. She also regret-
ted the times that she had felt frustrated at his disinterest
in eating and his hobbies. Though never an angry person,
she had experienced anger at her husband on more than
one occasion. The children all felt a measure of guilt as
well: Anne for going to a meeting instead of being with her
dad, Janet for being at work instead of at her dad’s bed-
side, and Bill for living so far away. Everyone wished they
had more time together as a family.
Jane became a grieving widow, very dependent, sad,
and indecisive—a person her children barely recognized.
At a time when they needed a strong, supportive mother,
that person was absent. The individuals best able to pro-
vide support to Jane and her children were the grandchil-
dren and spouses. Having never experienced the death
of someone so dear to them, all family members struggled
with daily life for several weeks after Glenn’s death.
Family Assessment and Intervention Model and
the Family Systems Stressor-Strength Inventory
Applied to the Howe Family:
The Family Systems Stressor-Strength Inventory
(FS3I) was used to assess stressors (problems) and
the strengths (resources) that the Howe family had in
coping with its situation soon after Glenn’s admission to
the medical-surgical unit. The patient and his wife, Glenn
and Jane, were interviewed together by the nurse, but
they each completed their own FS3I. Both Glenn’s and
Jane’s individual scores were tallied using the scoring
guide for the FS3I. Anne, the eldest daughter (37 years
old), Jan, the middle child (35 years old), and Bill
(32 years old) were all present, and all completed
the assessment instrument (FS3I).
The general stressors were viewed similarly by both
Glenn and Jane, and these stressors were assessed as
slightly less serious by the nurse than by the couple. Glenn,
Jane, and the nurse concurred that the general stress level
was high, which was consistent with their experience. The
specific stressors were perceived slightly differently by
Glenn and Jane. Figures 14-3 through 14-7 summarize the
information gained from the Howe family: (1) Figure 14-3
presents their FS3Is; (2) Figure 14-4 provides the Howe
family Quantitative Summary of Family Systems Stressors
Form: General and Specific; (3) Figure 14-5 lists the Howe
family and clinician summary on family strength; (4)
Figure 14-6 shows the Howe family Qualitative Summary
and Clinician Remarks; (5) and Figure 14-7 presents the
Howe Family Care Plan.
The Qualitative Summary and Clinician Remarks form
in Figure 14-6 serves as the groundwork for the Family
Care Plan in Figure 14-7. This form synthesizes informa-
tion pertaining to general stressors, specific stressors,
family strengths, and the overall functioning and physical
and mental health of the family members. The nurse
completed this form using her assessment skills with
information obtained from the conversation with the
family and the data obtained from the written FS3I.
The family members and the nurse perceived that
the worsening of Glenn’s physical condition because of
his chronic heart disease was the major general stressor.
Glenn’s specific stressors included his growing inability
to function as a husband, father, and grandfather, as
well as a fear of the unknown. Specific stressors for
Jane included concerns regarding the financial impact
of Glenn’s illness and her inability to provide care for
Glenn. The strengths of the family were seen as commu-
nication between all family members, religious faith, and
3921_Ch14_433-476 05/06/14 11:17 AM Page 456
Family Nursing in Acute Care Adult Settings 457
The Family Systems Stressor-Strength Inventory (FS3I) is an assessment and measurement instrument in-
tended for use with families. It focuses on identifying stressful situations occurring in families and the
strengths families use to maintain healthy family functioning. Each family member is asked to complete the
instrument on an individual form before an interview with the clinician. Questions can be read to members
unable to read.
After completion of the instrument, the clinician evaluates the family on each of the stressful situations
(general and specific) and the strengths they possess. This evaluation is recorded on the family member form.
The clinician records the individual family member’s score and the clinician perception score on the
Quantitative Summary. A different color code is used for each family member. The clinician also completes
the Qualitative Summary, synthesizing the information gleaned from all participants. Clinicians can use the
Family Care Plan to prioritize diagnoses, set goals, develop prevention and intervention activities, and eval-
uate outcomes.
Family Name Howe Date 6/10/14
Family Member(s) Completing Assessment Glenn Jane Anne
Ethnic Background(s) Caucasian-German-English
Religious Background(s) Protestant
Referral Source Family Physician
Interviewer CCU RN
noitacudE pihsnoitaleR ylimaF
Members in Family Age Marital Status (highest degree) Occupation
1. Glenn Father 64 Married BS Refinery Worker
2. Jane Mother 61 Married MA Teacher
3. Anne Daughter 37 Married BSN RN
4. Janet Daughter 35 Divorced AA Refinery Worker
5. Bill Son 32 Married PhD Psychologist
6.
Family’s current reasons for seeking assistance:
Glenn's heart disease is worsening, requiring sudden hospitalization for stabilization
Family health care nursing: Theory, practice, and research
pp. 425–437. Philadelphia: F.A. Davis.
Source: Hanson, S. M. H. (2001). (2nd ed.),
(continued)
FIGURE 14-3 Summary for Howe case study on Introduction Form for the Family Systems
Stressor-Strength Inventory.
3921_Ch14_433-476 05/06/14 11:17 AM Page 457
458 Nursing Care of Families in Clinical Areas
Part I: Family Systems Stressors (General)
DIRECTIONS: Each of 25 situations/stressors listed here deals with some aspect of normal family life.
They have the potential for creating stress within families or between families and the world in which they
live. We are interested in your overall impression of how these situations affect your family life. Please cir-
cle a number (0 through 5) that best describes the amount of stress or tension they create for you.
FAMILY PERCEPTION SCORE CLINICIAN
PERCEPTION
DOES LITTLE MEDIUM HIGH
EROCSSSERTSSSERTSSSERTSYLPPA TONSROSSERTS
1. Family member(s) 0 1 2 3 4 5 1
feel unappreciated
2. Guilt for not 0 1 2 3 4 5 4
accomplishing more
3. Insufficient “me” time 0 1 2 3 4 5 4
4. Self-Image/self-esteem/ 0 1 2 3 4 5 3
feelings of unattractiveness
5. Perfectionism 0 1 2 3 4 5 3
543210gniteiD .6 1
7. Health/Illness 0 1 2 3 4 5 4
8. Communication with children 0 1 2 3 4 5 4
9. Housekeeping standards 0 1 2 3 4 5 4
10. Insufficient couple time 0 1 2 3 4 5 3
11. Insufficient family playtime 0 1 2 3 4 5 4
12. Children’s behavior/discipline/ 0 1 2 3 4 5 1
sibling fighting
543210noisiveleT .31 1
14. Overscheduled 0 1 2 3 4 5 3
family calendar
15. Lack of shared 0 1 2 3 4 5 5
responsibility in the family
543210gnivoM .61 0
17. Spousal relationship 0 1 2 3 4 5 4
(communication, friendship, sex)
543210syadiloH .81 0
543210swal-nI .91 0
20. Teen behaviors (communication, 0 1 2 3 4 5 0
music, friends, school)
543210ybab weN .12 0
22. Economics/finances/budgets 0 1 2 3 4 5 5
23. Unhappiness with work situation 0 1 2 3 4 5 4
24. Overvolunteerism 0 1 2 3 4 5 0
543210srobhgieN .52 2
66 18 066.3 18 3.3
FIGURE 14-3—cont’d
3921_Ch14_433-476 05/06/14 11:17 AM Page 458
Family Nursing in Acute Care Adult Settings 459
Additional Stressors: Uncertainty about the future, spiritual issues
Family Remarks: Feeling a sense of urgency related to Glenn’s physical condition
Clinician: Clarification of stressful situations/concerns with family members.
Prioritize in order of importance to family members: Impact of physical illness on all family activities and interactions
Part II: Family Systems Stressors (Specific)
DIRECTIONS: The following 12 questions are designed to provide information about your specific stress-
producing situation/problem or area of concern influencing your family’s health. Please circle a number
(1 through 5) that best describes the influence this situation has on your family’s life and how well you
perceive your family’s overall functioning.
The specific stress-producing situation/problem or area of concern at this time is: Glenn’s worsening physical
condition, uncertain future and inability to maintain usual family activities
FAMILY PERCEPTION CLINICIAN
NOITPECREPEROCS
EROCSHGIHMUIDEMELTTILSROSSERTS
1. To what extent is your family bothered
by this problem or stressful situation?
(e.g., effects on family interactions,
communication among members,
emotional and social relationships) 1 2 3 4 5 5
Family Remarks: “This is huge for our family.” “We love Grandpa – we want him to get better.”
Clinician Remarks: All family members affected by Glenn’s physical condition.
2. How much of an effect does this
stressful situation have on your
family’s usual pattern of living?
(e.g., effects on lifestyle patterns
and family developmental task) 1 2 3 4 5 5
Family Remarks: “We haven’t been able to vacation together this year.”
Clinician Remarks: Normal family activities severely limited by Glenn’s illness
(continued)
FIGURE 14-3—cont’d
3921_Ch14_433-476 05/06/14 11:17 AM Page 459
460 Nursing Care of Families in Clinical Areas
FAMILY PERCEPTION CLINICIAN
NOITPECREPEROCS
EROCSHGIHMUIDEMELTTILSROSSERTS
3. How much has this situation affected
your family’s ability to work together
as a family unit? (e.g., alteration in
family roles, completion of family tasks,
following through with responsibilities) 1 2 3 4 5 4
Family Remarks: “Dad cannot do anything anymore – Mom has to do everything”
Clinician Remarks: All family members helpful to Glenn and Jane
Has your family ever experienced a similar concern in the past?
YES If YES, complete question 4
NO If NO, complete question 5
4. How successful was your family in dealing
with this situation/problem/concern in the
past? (e.g., workable coping strategies
developed, adaptive measures useful,
54321)devorpmi noitautis
Family Remarks: No experience, with critical illness “Nothing like this has ever happened to us”
Clinician Remarks: New territory for this family.
5. How strongly do you feel this current
situation/ problem/concern will affect
your family’s future? (e.g., anticipated
54321)secneuqesnoc 4
Family Remarks: Impending loss of head of family will be devastating to entire family
Clinician Remarks: Openly discussing future and ways to be together now
6. To what extent are family members able
to help themselves in this present situation/
problem/ concern? (e.g., self-assistive efforts,
family expectations, spiritual influence,
54321)secruoser ylimaf 4
Family Remarks: Rely heavily on one another, friends, clergy and health care workers
Clinician Remarks: Well informed, knowledgeable, eager to provide care
FIGURE 14-3—cont’d
3921_Ch14_433-476 05/06/14 11:17 AM Page 460
Family Nursing in Acute Care Adult Settings 461
FAMILY PERCEPTION CLINICIAN
NOITPECREPEROCS
EROCSHGIHMUIDEMELTTILSROSSERTS
7. To what extent do you expect others
to help your family with this situation/
problem/concern? (e.g., what roles would
helpers play; how available are extra-family
54321)secruoser 3
Family Remarks: Neighbors, coworkers, and health care personnel
Clinician Remarks: Very trusting, open and cooperative with visitors and nurses
EROCSTNELLECXEYROTCAFSITASROOPSROSSERTS
8. How would you rate the way your family
functions overall? (e.g., how your family
members relate to each other and to larger
54321)ytinummoc dna ylimaf 4
Family Remarks: Recent worsening of physical problems has frightened family members
Clinician Remarks: Anxious, asking frequent questions regarding prognosis
9. How would you rate the overall physical
health status of each family member by name?
(Include yourself as a family member; record additional names on back.)
a. Glenn 1 2 3 4 5 1
b. Jane 1 2 3 4 5 4
c. Anne 1 2 3 4 5 5
d. Janet 1 2 3 4 5 5
e. Bill 1 2 3 4 5 5
10. How would you rate the overall physical
health status of your family as a whole? 1 2 3 4 5 4
Family Remarks: Glenn’s deteriorating health is affecting the activities of the entire family
Clinician Remarks: Healthy family members are curtailing their usual activities due to Glenn’s illness
11. How would you rate the overall mental health status of each family member by name? (Include
yourself as a family member; record additional names on back.)
a. Glenn 1 2 3 4 5 2
b. Jane 1 2 3 4 5 4
c. Anne 1 2 3 4 5 4
d. Janet 1 2 3 4 5 3
e. Bill 1 2 3 4 5 3
(continued)
FIGURE 14-3—cont’d
3921_Ch14_433-476 05/06/14 11:17 AM Page 461
462 Nursing Care of Families in Clinical Areas
FAMILY PERCEPTION CLINICIAN
NOITPECREPEROCS
EROCSHGIHMUIDEMELTTILSROSSERTS
12. How would you rate the overall mental
health status of your family as a whole? 1 2 3 4 5 3
Family Remarks: Glenn is feeling guilty, both Glenn and Jane are anxious, Janet is depressed
Clinician Remarks: Glenn’s anxiety & fear of the unknown is affecting the entire family
Glenn 3.6 Clinician 3.3
Part III: Family Systems Strengths
DIRECTIONS: Each of the 16 traits/attributes listed below deals with some aspect of family life and its
overall functioning. Each one contributes to the health and well-being of family members as individuals
and to the family as a whole. Please circle a number (0 through 5) that best describes the extent to which
the trait applies to your family.
FAMILY PERCEPTION CLINICIAN
NOITPECREP EROCS
DOES
MY FAMILY NOT APPLY SELDOM USUALLY ALWAYS SCORE
1. Communicates and
listens to one another 0 1 2 3 4 5 5
Family Remarks: All family members feel they are communicating openly about everything except Glenn’s health
Clinician Remarks: Need to talk more about Glenn’s prognosis and future financial concerns
2. Affirms and supports
one another 0 1 2 3 4 5 4
Family Remarks: All members feel supported especially by Jane
Clinician Remarks: Very supportive family
3. Teaches respect for others 0 1 2 3 4 5 4
Family Remarks: Very respectful of one another
Clinician Remarks: Respectful of health care team
FIGURE 14-3—cont’d
3921_Ch14_433-476 05/06/14 11:17 AM Page 462
Family Nursing in Acute Care Adult Settings 463
FAMILY PERCEPTION CLINICIAN
NOITPECREPEROCS
DOES
MY FAMILY NOT APPLY SELDOM USUALLY ALWAYS SCORE
4. Develops a sense
of trust in members 0 1 2 3 4 5 4
Family Remarks: Trust each other and the health care team
Clinician Remarks: Work very well with nurses and health care workers
5. Displays a sense
of play and humor 0 1 2 3 4 5 3
Family Remarks: Less often now as very anxious about Glenn’s health
Clinician Remarks: Rarely demonstrated
6. Exhibits a sense of
shared responsibility 0 1 2 3 4 5 4
Family Remarks: Depend on one another
Clinician Remarks: Take turns at the bedside
7. Teaches a sense of
right and wrong 0 1 2 3 4 5 4
Family Remarks: “Of course!”
Clinician Remarks:
8. Has a strong sense of
family in which rituals and
traditions abound 0 1 2 3 4 5 3
Family Remarks: Holidays very important missing the opportunity for family dinners
Clinician Remarks:
(continued)
FIGURE 14-3—cont’d
3921_Ch14_433-476 05/06/14 11:17 AM Page 463
464 Nursing Care of Families in Clinical Areas
FAMILY PERCEPTION CLINICIAN
NOITPECREPEROCS
DOES
MY FAMILY NOT APPLY SELDOM USUALLY ALWAYS SCORE
9. Has a balance of
interaction among
members 0 1 2 3 4 5 3
Family Remarks: Balanced responsibilities overall though all very interactive with Jane
Clinician Remarks: Anne appears to take the lead interacting with nurses and physicians
10. Has a shared
religious core 0 1 2 3 4 5 3
Family Remarks: Regular church attenders
Clinician Remarks:
11. Respects the privacy
of one another 0 1 2 3 4 5 4
Family Remarks: Not a problem
Clinician Remarks: Not observed to be an issue
12. Values service to others 0 1 2 3 4 5 4
Family Remarks: Most in helping professions
Clinician Remarks: Very helpful and appreciative of nursing care provided.
13. Fosters family table
time and conversation 0 1 2 3 4 5 4
Family Remarks: Missing those opportunities
Clinician Remarks: Hospital cafeteria offers some together time
14. Shares leisure time 0 1 2 3 4 5 4
Family Remarks: Usually spend all vacations together
Clinician Remarks: Seem to enjoy one another
FIGURE 14-3—cont’d
3921_Ch14_433-476 05/06/14 11:17 AM Page 464
Family Nursing in Acute Care Adult Settings 465
FAMILY CLINICIAN
PERCEPTION SCORE PERCEPTION
DOES
MY FAMILY NOT APPLY SELDOM USUALLY ALWAYS SCORE
15. Admits to and seeks
help with problems 0 1 2 3 4 5 5
Family Remarks: Rely on family physician and nurses
Clinician Remarks: Back help appropriately
16a. How would you rate
the overall strengths that
exist in your family? 0 1 2 3 4 5 4
Family Remarks: Excellent, though tested at the moment
Clinician Remarks: Very strong
16b. Additional Family Strengths: Love and enjoyment of grandchildren
16c. Clinician: Clarification of family strengths with individual members:
Anne - RN
Bill - Psychologist
(continued)
FIGURE 14-3—cont’d
3921_Ch14_433-476 05/06/14 11:17 AM Page 465
466 Nursing Care of Families in Clinical Areas
Family Systems Stressor-Strength inventory (FS3I) Scoring Summary
Section 1: Family Perception Scores
The Family Systems Stressor-Strength Inventory (FS3I) Scoring Summary is divided into two sections: Section
1, Family Perception Scores, and Section 2, Clinician Perception Scores. These two sections are further divided
into three parts: Part I, Family Systems Stressors (General); Part II, Family Systems Stressors (Specific); and
Part III, Family Systems Strengths. Each part contains a Quantitative Summary and a Qualitative Summary.
Quantifiable family and clinician perception scores are both graphed on the Quantitative Summary. Each
family member has a designated color code. Family and clinician remarks are both recorded on the Quanti-
tative Summary. Quantitative Summary scores, when graphed, suggest a level for initiation of prevention/
intervention modes: Primary, Secondary, and Tertiary. Qualitative Summary information, when synthesized,
contributes to the development and channeling of the Family Care Plan.
Add scores from questions 1 to 25 and calculate an
overall numerical score for Family Systems Stres-
sors (General). Ratings are from 1 (most positive)
to 5 (most negative). The Does Not Apply (0) re-
sponses are omitted from the calculations. Total
scores range from 25 to 125.
Family Systems Stressor Score (General)
(25) 1
Graph score on Quantitative Summary, Family Sys-
tems Stressors (General), Family Member Percep-
tion Score. Color-code to differentiate family mem-
bers. Record additional stressors and family
remarks in Part I, Qualitative Summary: Family and
Clinician Remarks.
Add scores from questions 1 through 8, 10, and 12
and calculate a numerical score for Family Systems
Stressors (Specific). Ratings are from 1 (most positive)
to 5 (most negative). Questions 4, 6, 7, 8, 10 and 12
are reverse scored.* Total scores range from 10
through 50. Family Systems Stressor Score (Specific)
(10) 1
Graph score on Quantitative Summary, Family Sys-
tems Stressors (Specific) Family Member Perception
Score. Color-code to differentiate family members.
Summarize data from questions 9 and 11 (reverse
scored) and record family remarks in Part II, Qual-
itative Summary: Family and Clinician Remarks.
Add scores from questions 1 through 16 and calcu-
late a numerical score for Family Systems Strengths.
Ratings are from 1 (seldom) to 5 (always). The
Does Not Apply (0) responses are omitted from the
calculations. Total Scores range from 16 to 80.
(16) 1
Graph score on Quantitative Summary: Family Sys-
tems Strengths, Family Member Perception Score.
Record additional family strengths and family re-
marks in Part III, Qualitative Summary: Family and
Clinician Remarks.
Source: Mischke-Berkey, K., & Hanson, S. M. H. (1991). Pocket guide to family assessment and intervention. St. Louis, MO: Mosby.
*Reverse scoring:
Question answered as (1) is scored 5 points.
Question answered as (2) is scored 4 points.
Question answered as (3) is scored 3 points.
Question answered as (4) is scored 2 points.
Question answered as (5) is scored 1 point.
FIGURE 14-3—cont’d
3921_Ch14_433-476 05/06/14 11:17 AM Page 466
Family Nursing in Acute Care Adult Settings 467
SECTION 2: CLINICIAN PERCEPTION SCORES
Add scores from questions 1 through 25 and calcu-
late an overall numerical score for Family Systems
Stressors (General). Ratings are from 1 (most posi-
tive) to 5 (most negative). The Does Not Apply (0)
responses are omitted from the calculations. Total
scores range from 25 to 125.
Family systems Stressor Score (General)
(25) 1
Graph score on Quantitative Summary, Family Sys-
tems Stressors (General) Clinician Perception Score.
Record clinicians’ clarification of general stressors
in Part I, Qualitative Summary: Family and Clini-
cian Remarks.
Add scores from questions 1 through 8, 10, 12 and
calculate a numerical score for Family Systems Stres-
sors (Specific). Ratings are from 1 (most positive) to
5 (most negative). Questions 4, 6, 7, 8, 10, 12 are re-
verse scored.* Total scores range from 10 to 50.
Family Systems Stressor Score (Specific)
(10) 1
Graph score on Quantitative Summary, Family Sys-
tems Stressors (Specific), Clinician Perception Score.
Summarize data from questions 9 and 11 (reverse
scored) and record clinician remarks in Part II, Qual-
itative Summary: Family and Clinician Remarks.
Add scores from questions 1 through 16 and calcu-
late a numerical score for Family Systems Strengths.
Ratings are from 1 (seldom) to 5 (always). The
Does Not Apply (0) responses are omitted from the
calculations. Total scores range from 16 to 80.
(16) 1
Graph score on Quantitative Summary, Family Sys-
tems Strengths, Clinician Perception Score. Record cli-
nician’s clarification of family strengths in Part III,
Qualitative Summary: Family and Clinician Remarks.
*Reverse scoring:
Question answered as (1) is scored 5 points.
Question answered as (2) is scored 4 points.
Question answered as (3) is scored 3 points.
Question answered as (4) is scored 2 points.
Question answered as (5) is scored 1 point.
(continued)
FIGURE 14-3—cont’d
3921_Ch14_433-476 05/06/14 11:17 AM Page 467
468 Nursing Care of Families in Clinical Areas
SCORE SCORE
DIRECTIONS: Graph the scores from each family member inventory by placing an “X” at the appropriate location. (Use first name
initial for each different entry and different color code for each family member.)
YLIMAF)LARENEG( SROSSERTS SMETSYS YLIMAF SYSTEMS STRESSORS (SPECIFIC)
SCORES FOR FAMILY MEMBER CLINICIAN SCORES FOR FAMILY MEMBER CLINICIAN
WELLNESS PERCEPTION PERCEPTION WELLNESS PERCEPTION PERCEPTION
AND STABILITY
0.50.5
8.48.4
4.6
X√4
4.6
4.4 X√ 4.42
4.2 X√ 2.43
X√4
0.40.4
8.38.3
X√3
3.6 X√ 6.31
X√5
4.34.3
3.2
X√5 X
3.2
X
0.30.3
X√2
8.28.2
X√1
6.26.2
4.24.2
2.22.2
0.20.2
8.18.1
6.16.1
4.14.1
2.12.1
0.10.1
*PRIMARY Prevention/Intervention Mode: Flexible Line 1.0–2.3
*SECONDARY Prevention/Intervention Mode: Normal Line 2.4–3.6
*TERTIARY Prevention/Intervention Mode: Resistance Lines 3.7–5.0
*Breakdowns of numerical scores for stressor penetration are suggested values.
√1 Glenn √3 Anne √5 Bill
√2 Jane √4 Janet
SCORE SCORE AND STABILITY
FIGURE 14-4 Howe family Quantitative Summary of Family Systems Stressors Form: General
and Specific.
3921_Ch14_433-476 05/06/14 11:17 AM Page 468
Family Nursing in Acute Care Adult Settings 469
DIRECTIONS: Graph the scores from the inventory by placing an “X” at the appropriate location and connect with a line. (Use first name
initial for each different entry and different color code for each family member.)
FAMILY SYSTEMS STRENGTHS
SUM OF STRENGTHS
AVAILABLE FOR PREVENTION/ FAMILY MEMBER CLINICIAN
EROCS NOITPECREPEROCS NOITPECREPEDOM NOITNEVRETNI
5.0
4.8
4.6
√3
4.4 √2
√1
4.2
4.0
3.8
√5 X
3.6
√4
3.4
3.2
3.0
2.8
2.6
2.4
2.2
2.0
1.8
1.6
1.4
1.2
1.0
*PRIMARY Prevention/Intervention Mode: Flexible Line 1.0–2.3
*SECONDARY Prevention/Intervention Mode: Normal Line 2.4–3.6
*TERTIARY Prevention/Intervention Mode: Resistance Lines 3.7–5.0
*Breakdowns of numerical scores for stressor penetration are suggested values.
√1 Glenn √3 Anne √5 Bill
√2 Jane √4 Janet
FIGURE 14-5 Howe family and clinician summary on family strengths.
3921_Ch14_433-476 05/06/14 11:17 AM Page 469
470 Nursing Care of Families in Clinical Areas
Summarize general stressors and remarks of family and clinician. Prioritize stressors according to impor-
tance to family members.
The major general stressors of the family is the worsening heart disease
and the impact of the disabling stress on the entire family
A. Summarize specific stressors and remarks of family and clinician.
Glenn's specific stressors: growing inability to function as a husband,
father & grandfather, fear of the unknown
B. Summarize differences (if discrepancies exist) between how family members and clinicians view effects
of stressful situation on family.
Concerns regarding financial impact of illness not shared with all family
members
C. Summarize overall family functioning.
Functioning fairly well but uncertainty regarding physical health taking
a toll on mental health of three family members
D. Summarize overall significant physical health status for family members.
The differences between Glenn’s physical health and the physical health
of all other family members are significant and problematic for planning
family activities
E. Summarize overall significant mental health status for family members.
Glenn’s anxieties and Jane’s anxiety and Janet’s depression are affecting
all other family members
Summarize family systems strengths and family and clinician remarks that facilitate family health and
stability.
Open communications, supportive family members, religious faith, trust in
health care providers, having relationships
FIGURE 14-6 Howe family Qualitative Summary and clinician remarks.
3921_Ch14_433-476 05/06/14 11:17 AM Page 470
Family Nursing in Acute Care Adult Settings 471
SUMMARY
When medical-surgical nurses view families as
partners in the care provided to patients, they are
providing unfragmented, holistic, humane, and
sensitively delivered health care. When nurses
practice family-centered care in acute care settings,
families are empowered to manage the stressors of
being in the hospital environment, which is foreign
territory to most people. Families are better pre-
pared to support their loved ones, aid in their re-
covery, or facilitate a comfortable death. Families
are called on to support their ill family member
in the hospital, make important life decisions on
behalf of or in partnership with the patient, serve
as caregivers, and advocate for the patient in the
complex health care system.
■ The stress families experience when family
members are in the hospital is significant.
Family members are at risk for depression,
anxiety, and PTSD.
■ The role of families in the hospital setting is
crucial because patients have been shown to
have more positive outcomes when families
are involved in their loved one’s care while
in the hospital.
■ The benefits of practicing family nursing or
family-centered care in the hospital setting
have been well documented. Yet health care
providers in the hospital environment continue
FIGURE 14-7 Howe family care plan.
the availability of a supportive health care team. The
overall family functioning was considered to be as good
as could be expected under the circumstances. Whereas
Glenn’s physical health was compromised, Jane’s physi-
cal health was good. Both Glenn and Jane expressed
mental health concerns, including anxiety, guilt, depres-
sion, and fear of the unknown. Overall, the nurse per-
ceived that the family had the strengths they needed to
deal with both the general and specific stressors present
when Glenn was hospitalized.
Family Care Plan*
PREVENTION/INTERVENTION MODE
DIAGNOSIS AND FAMILY SYSTEMS
SEMOCTUO/NOITNEVERP,YRAMIRP SHTGNERTS DNA LARENEG
SPECIFIC FAMILY SUPPORTING GOALS FOR FAMILY SECONDARY, INTERVENTION EVALUATION AND
SYSTEM STRESSORS FAMILY CARE PLAN AND CLINICIAN OR TERTIARY ACTIVITIES REPLANNING
Diagnosis of
cardiac disease
with sudden
worsening of
symptoms
necessitating
curtailment of family
activities and
uncertainty
about the future
*Prioritize the three most significant diagnoses.
Family communica-
tion, social support,
religious faith, good
medical care,
knowledgeable fam-
ily members
Restoration of sta-
ble cardiac status
sufficient to return
home
Family members
will continue to
support Glenn
and each other
Education regarding
new medications
and activity restric-
tions
Home health
care & discharge
O2 therapy
Family counseling
to deal with anxiety
and uncertain future
Financial counseling
Evaluation to be
done once plan is
implemented
The Howe Family Care Plan (see Fig. 14-7) was devel-
oped by the nurse in collaboration with the family members
who completed the FS3I. The Family Care Plan includes the
diagnosis of general/specific family systems stressors and
family systems strengths supporting the family care plan
and the goals of the family, primary, secondary, and tertiary
interventions and outcomes/evaluation. The goals of this
Family Care Plan included restoring stable cardiac status
sufficient to return home from the hospital, and all family
members continuing to support Glenn and each other.
3921_Ch14_433-476 05/06/14 11:17 AM Page 471
to practice individual patient-centered rather
than family-centered care (family nursing).
■ Nurses in medical-surgical environments
recognize and feel responsible to practice
family-centered or family nursing. Yet
they struggle with role ambiguity and role
conflict, as they continue to practice in
settings that reward the biomedical model
of health care and not a holistic nursing
model of care.
■ The environment for providing family-
centered nursing care (family nursing) in
acute care settings is dependent on hospital
policies and procedures that consider the
needs of families.
■ Transferring loved ones from critical care
units to the medical-surgical units is stressful
for families because it creates a sense of con-
flict. On one hand, families are glad their loved
ones are better, but they also worry that their
family members may not be ready to be moved
out of such intensive nurse watchfulness.
■ The family member who advocates for his
loved one in the hospital assumes a difficult,
time-consuming, and fatiguing role as he
often travels long distances to get to the
hospital, takes time off work to be there,
often stays all night in the hospital, manages
the informational needs of the patient and
the family, and works through a complex
health care system.
■ Effective communication with patients, fami-
lies, and interdisciplinary health care providers
improves client satisfaction, promotes positive
response to care, reduces length of stay in care
settings, and results in decreased overall cost
and resource utilization.
■ Compassionate communication provides
crucial care to families as they are asked to
make multiple decisions as their loved one
dies in the hospital.
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477
Family Health in Mid
and Later Life
c h a p t e r 15
Diana L. White, PhD
Jeannette O’Brien, PhD, RN
C r i t i c a l C o n c e p t s
■ In most care settings, a majority of those receiving care are older than 65 years.
■ Although most older adults are healthy and independent, as a result of chronic illnesses, many become more limited
in activities of daily living with advanced age.
■ Most older adults have family ties that are positive, meaningful, and supportive. It is rare for older adults to be
neglected or uncared for by their families.
■ Like all families, families of older adults are diverse. This diversity is influenced by history, race, class, and gender,
as well as by individual family history and traditions. These factors influence family composition, health status, health
beliefs, and capacity to support each other during times of illness or stress.
■ Older adults in families are givers of care, as well as receivers. Until very old age, older family members provide more
economic, social, and emotional support to adult children than they receive; they step in to assist families members
in crisis, and most caregivers of older adults are spouses.
■ Families provide most of the care to older adults, regardless of the care setting. The ways families organize and
structure care varies. Nursing care is most effective when done in partnership with families.
■ All families experience transitions over the life course. Some are expected and some are not. Each transition is
influenced by health status, culture, financial security, and social supports.
■ Gerontological nursing takes place in all care settings, although the specific needs of older adults and their families
vary. Most older adults live and receive care in community settings.
When we think about aging clients and their fam-
ilies, we often think of individuals or couples who
are older than 65 years. These individuals, how-
ever, are embedded within a larger family system
that includes different and intersecting generations.
For example, a 75-year-old couple today may be
newlyweds and have living parents. They may be
completely healthy with no chronic conditions and
spend some of their family time supporting them-
selves and others. In contrast, a 75-year-old person
may be widowed and isolated from other social
support, may have multiple chronic conditions,
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478 Nursing Care of Families in Clinical Areas
experience several limitations in activities of daily
living (ADLs), and require significant help from
others. In either case, if the 75-year-olds have chil-
dren, they are likely to be grandparents and even
great-grandparents, and they may be the primary
caregivers to one or more of those grandchildren.
If these individuals need help, in any generation,
it will come most often from family members.
When older adults need care, whether at home, in
the hospital, or in a range of long-term care (LTC)
settings, families will be participating in that care
in most circumstances. Some family members will
be active leaders in that care, whereas others will
require substantial support from nurses and other
professionals. A minority of older adults will have
weak social ties and may be isolated from family
and friends in old age. These individuals will rely
heavily on formal services.
LIFE COURSE PERSPECTIVE
The aging population is diverse, and family systems
are complex. Family gerontologists (those who
study aging) often use a life course perspective as a
way to understand this complexity (Settersten,
2006). The life course perspective recognizes that
individuals are embedded in a family system, and
that individuals and the family as a whole develop
and change over time. This outlook is compatible
with many family and social science theories, and
is often used in conjunction with other theories, in-
cluding the theories that guide this book. This
chapter discusses the life course perspective in re-
lation to family systems theory, family life cycle
theory, and the ecology model of family develop-
ment. This section describes ways the life course
perspective enhances these family theories in con-
tributing to greater understanding of the diversity
of family experiences in mid and later life.
Family Systems Theories
Family systems theories emphasize connections
among family members. When something happens
to or is experienced by one family member, others
are affected in some way. The life course perspective
encourages us to consider family systems broadly.
Connidis (2010), for example, describes family rela-
tionships in terms of “family ties,” which helps us
think about families that extend beyond households
and the nuclear family. Family ties include extended
family members and fictive kin—those who are “like
family” but are not connected through blood or mar-
riage. As described throughout this chapter, and as is
evident in Chapter 3, the character of family ties
varies within and between families. Responses to life
events among family members are influenced by a
history of family rules and traditions that have devel-
oped over time (Hanson, 1995) and the quality and
characteristics of family ties within the family system.
Family breakdown may occur when rules and tradi-
tions are not adequate to cover a particular situation.
For example, in some families, breakdown may occur
when siblings disagree strongly on how to provide
support to frail, cognitively impaired parents. One
may stress the importance of a parent remaining in
her own home, whereas another may feel that the
parent’s unique health and safety needs demand
nursing home care. At the same time, neither can
agree on how to spend scarce resources to make ei-
ther option workable. These disagreements are likely
consistent with previous patterns and relationships.
Family Life Cycle Theory
The family life cycle model helps to predict when
normative or expected changes will occur. For ex-
ample, many middle-aged and older adults experi-
ence their children leaving home and establishing
their own households, a normative change. Adult
children form partnerships through marriage or co-
habitation. They also begin to achieve financial in-
dependence through work. Middle-aged adults who
are parents can expect to become grandparents. Re-
tirement is an expected and often desired transition
for those with an adequate income and retirement
savings. These transitions have been considered
normative and represent “on-time” events. For a
variety of reasons, however, the timing and even the
occurrence of these expected milestones are chang-
ing and becoming less predictable. The life course
perspective, like the family life cycle theory, focuses
on transitions, but also examines the timing of
transitions, and the social circumstances, historical
events, and the series of decisions that shape indi-
vidual and family experiences over time.
Bioecological Model
The life course perspective in conjunction with the
bioecological model helps explore how societal
3921_Ch15_477-520 05/06/14 11:18 AM Page 478
changes are influencing the timing and context
of transitions within and across families, and how
societal changes both shape and are influenced by
individual and family decisions. For example, it is
increasingly common for young adults to leave
home and then return due in part to difficulties
finding jobs in the current economic climate.
Women and men go to college in midlife to begin
new careers either voluntarily (e.g., a desire for
more meaningful work or a better work-family
balance) or involuntarily (e.g., needing new skills
after a layoff). Many couples in middle age are
beginning their families, not “launching them,” re-
flecting changes in family planning norms, partic-
ularly for women pursuing professional careers.
Some couples in their fifties adopt young children,
sometimes their own grandchildren. Those in their
seventies may seek paid employment because of a
desire to work or because of financial necessity. Ac-
cording to Quadagno (2008), after several years
of declining labor force participation by those older
than 60, trends now for both women and men are
to remain in the labor force longer. More than 30%
of men and about 22% of women 65 to 69 years
continue to work full-time or part-time. Past
age 70, 10% of men and 8% of women are work-
ing. Thus, attitudes and expectations about what is
normative or nonnormative, and what is on-time
or off-time, are changing, resulting in much greater
flexibility and diversity in family experiences. In
addition, some transitions, although common, may
not be expected and often cause difficulties for fam-
ilies. These include divorce, involuntary job loss,
declining health or disability, providing care for
ill or dependent family members, and death of a
family member.
The life course perspective is particularly helpful
in understanding the complexity and diversity of
family life revealed in these examples, providing a
dynamic understanding of family life across gener-
ations (Bengtson & Allen, 1993; Bianchi & Casper,
2005). As with bioecological models, the life course
perspective emphasizes context, including the so-
cietal conditions in which individuals and families
function, as well as the actions individuals take
in shaping their relationships and the trajectories
of their lives (Alwin, 2012). Individuals and fami-
lies are influenced by the historical times in which
they live. For example, those who are currently in
their eighties and nineties and lived in the United
States experienced the Great Depression as young
children and many men served in World War II.
Later, these children of the Great Depression were
parents of the baby boom generation. The baby
boom represented a reversal in the trend toward
smaller families, resulting in a population bulge
that has dominated family life and public policy in
the United States ever since. Baby boomers had a
different set of challenges and opportunities than
their parents and are now entering old age. Their
worldview was shaped by the Vietnam war, the civil
rights movement, assassinations of U.S. leaders,
and the sexual revolution.
Young adults now in their twenties have grown
up in a technological and global age quite different
from either their parents or grandparents. They
have experienced households in which both parents
were more likely to work outside the home and
divorce was more common. Compared to earlier
generations, young adults are marrying later or
choosing not to marry. Most are postponing or even
forgoing childbearing regardless of marital status
(Cherlin, 2010). They have also seen a growth in
health and economic disparities among various seg-
ments of the population, come of age during the
Great Recession, and, to varying degrees, experi-
enced the Iraq and Afghanistan wars. Those pursu-
ing higher education are incurring a huge amount
of personal debt. These experiences will influence
middle and late life for these individuals.
In all phases of history, societal issues related to
race, class, gender, abilities, and immigration have
influenced the kinds of opportunities and barriers
individuals experience throughout their lives. This
combination of historical events and social context
must be considered in understanding how changing
environments, cultural norms, economic condi-
tions, and political circumstances affect families in
mid and later life. Such influences can be seen in
work and family decisions, access to health care,
and educational opportunities. Many advantages or
disadvantages accumulate over a lifetime and across
generations (Dannefer, 2003; Hungerford, 2007).
For example, children raised in poverty are more
likely to have poorer health, less likely to attend
college, and more likely to experience hardships
in middle and old age (Hungerford, 2007). They
are also more likely to marry young, have chil-
dren before age 30, and divorce (Cherlin, 2010). In
contrast, those with more privileged childhoods
experience better health and education, are more
likely to have higher-paying jobs as adults, have
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adequate health care, and enter old age with ade-
quate retirement resources. In turn, they are likely
to provide their own children with a relatively priv-
ileged upbringing.
Even as we emphasize the importance of social
and historical context in shaping individual and
family lives, we must remember that individuals
are not passive. They are active agents, even as
their actions may be constrained or enhanced
by broader societal circumstances (Alwin, 2012;
Connidis, 2010; Settersten, 2006). There are
many examples of individuals following or going
against societal norms against history, and how
that affected the individuals’ lives. For example,
in war-torn countries, the decision to leave or
stay within that country influences the individual
and the family for generations thereafter. The life
course perspective will be used in this chapter to
foster understanding of families with older adults
and the family ties that influence their health.
This perspective will be used to think about op-
timal nursing care for these families, using the
nursing process. Furthermore, this approach will
be used to explain current social policies influenc-
ing older adults and their families.
PROFILE OF AGING FAMILIES
In this section we will explore demographic trends
that influence families in mid and later life, in-
cluding family structures and functions. We will
also examine different facets of family relation-
ships, from same-generation and intergenera-
tional relationships to challenges of ambivalence
and conflict.
Family structures and many of the functions of
family are changing at a rapid pace. Several trends
have emerged as our population ages, and many
of these trends affect families and nursing care of
families. The most dramatic is the increased num-
bers of adults older than 65 years worldwide
(Christensen, Doblehammer, Rau, & Vaupel, 2009;
Federal Interagency Forum on Aging-Related
Statistics, 2012). Older adults are part of families,
offering historical context, developmental perspec-
tive, and support for younger adults and children.
With greater longevity, families have older mem-
bers and many family relationships last decades
longer than in the past. With advanced age, the
assistance of younger family members may be
needed to maintain independent living or care
for progressive chronic illnesses. Other trends
include greater racial and ethnic diversity in later
life; more older adults living with chronic illnesses;
delayed marriage and childbirth; changing family
structure due to increasing numbers of divorced
older adults, more who have never married (but
may have intimate partnerships), and greater num-
bers of grandparents living with and/or raising
grandchildren (Cherlin, 2010). These trends con-
tribute to changing family relationships, including
increased reliance on support across generations
and the challenge of intergenerational conflicts.
Caregiving, which includes the unpaid assistance
provided by family members for an individual with
one or more chronic conditions, is increasingly a
normative feature of middle and late life (Family
Caregiver Alliance, 2006).
Demographic Profile
The aging of the population worldwide is unprece-
dented historically and has implications for all
aspects of society. The 40.3 million adults older
than 65 represent 13% of the population of the
United States. In Canada, over 33 million (15.5%)
are 65 or older. More than 50 countries have at
least 10% of their populations over the age of 65.
Japan leads with 22.8%, followed by Germany and
Italy with over 20% (Federal Interagency Forum
on Aging-Related Statistics, 2012). By 2050, num-
bers in the United States will more than double,
resulting in an aging population comprising over
25% of the population (Vincent & Velkoff, 2010).
The fastest growing segment of the population in
all developed nations is those older than 85 years
(Christensen et al., 2009). The United States will
see an increase of 36% in this age group between
2010 and 2020, from 5.5 to 6.6 million (Adminis-
tration on Aging, 2011).
As a group, older adults are healthier, better
educated, and more financially secure than in pre-
vious generations. People throughout the world are
living longer than ever before. At 65 years, an in-
dividual in the United States can expect to live
nearly 19 more years; women reaching age 85 can
expect to live more than seven more years, whereas
men are likely to have about six more years of
life (Federal Interagency Forum on Aging-Related
Statistics, 2012). Most of these individuals, even
those who are very old, live independently and in
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good health. Three quarters of those older than
65 years report having good, very good, or excel-
lent health (Federal Interagency Forum on Aging-
Related Statistics, 2012). This is especially true for
whites; over 78% report being in good to excellent
health compared to about 62% for both African
Americans and Hispanic/Latino elders.
Many people report being in good health in
spite of having one or more chronic conditions.
Although the prevalence of older adults with
chronic disabilities declined steadily between the
1980s and 2004 (Manton, 2008), most older adults
continue to experience chronic disease, particularly
arthritis, heart disease, uncontrolled hypertension,
cancer, and diabetes. More important than having
a chronic disease is whether and how it affects
an individual’s ability to function and engage in
desired and meaningful activity. Spillman (2004)
reported that about 75% of older adults, including
those with chronic conditions, indicated no diffi-
culty or disability related to ADLs (basic self-care
tasks such as bathing, eating, or dressing), or in in-
strumental activities of daily living (IADLs). IADLs
include basic functions and activities that allow
elderly individuals to continue to live independ-
ently, such as using the telephone, managing
money, doing laundry, maintaining one’s home,
and managing transportation. Declines in the need
for assistance with IADLs may be explained in part
by use of technology, including new mobility de-
vices. Declines in disabilities related to ADLs are
due to improved management of chronic disease,
particularly cardiovascular disease (Manton, 2008).
Recent data suggest that the favorable trends in
both chronic disease and functional abilities may
be changing, often due to lifestyle. This can be seen
most dramatically with the obesity epidemic, con-
sequences of which can be seen in older as well as
younger age groups (Christiansen et al., 2009).
More than two-thirds of those over age 60 are
overweight or obese; 31% are obese. More women
than men are obese. This contributes to decreased
physical activity and ultimately to poorer health
and physical function (Riebe et al., 2009). This
trend has important implications for caregiving
within families; for example, obesity increases the
strain on both the caregiver and the recipient of
care due to increased physical strain.
In the United States, older adults are more
diverse ethnically and racially than in previous gen-
erations. This includes growing proportions of
minority older adults in the population. The older
African American population will quadruple be-
tween 2000 and 2050, whereas the Hispanic and
Asian/Pacific Islander populations will be seven and
six-and-a-half times larger, respectively (Dilworth-
Anderson, Williams, & Gibson, 2002). Minority
older adults have shorter life expectancies and
report poorer health throughout the life course
(Federal Interagency Forum on Aging-Related
Statistics, 2012). In addition, racial and ethnic mi-
nority groups tend to receive poorer quality care than
whites, even controlling for socioeconomic status
and severity of illness or condition (Kronenfeld,
2006).
Although the outlook for a healthy old age is
generally positive, older adults have the greatest
need for health care and are the major users of
health care services, especially those older than
85 years. Approximately 25% of older adults have
chronic conditions that interfere with daily activi-
ties (Kronenfeld, 2006). This means that close to
seven million older adults in the United States have
significant chronic disabilities (Manton, 2008;
Spillman, 2004). In 2002, about half of hospital
patients were older than 65 and accounted for
41% of all hospitalizations (Kleinpell, Fletcher, &
Jennings, 2008). Unlike younger adults and chil-
dren, older adults are more likely to have chronic
illnesses, and most of those with chronic illnesses
have more than one. In 2004, six of the top seven
causes of death were chronic illnesses: heart dis-
ease, malignant neoplasms, cerebrovascular dis-
eases, chronic lower respiratory diseases, diabetes
mellitus, and Alzheimer’s disease (Federal Intera-
gency Forum on Aging-Related Statistics, 2012).
Other chronic diseases common in old age include
arthritis and hypertension. Older adults also expe-
rience sensory impairments with age. Kronenfeld
(2006) reported that, in 2002, nearly half of older
men and about one third of older women indicated
they had trouble hearing. Vision problems, even
after correction from glasses or contact lenses,
occurred in 16% of men and 19% of women.
Between 9% and 21% of those older than 70 years
have both hearing and vision loss (Saunders &
Echt, 2007). Sensory changes may interfere with
abilities to function or to interact socially. Hearing
loss can be particularly difficult, leading to social
isolation or mistaken perceptions by others that the
elder is cognitively impaired. Vision loss can affect
or prohibit the ability to drive, which can increase
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dependency on others. Senses related to smell and
taste generally remain stable into old age when one
is healthy, but can be negatively affected by disease
or medications. This in turn may lead to poor nu-
tritional status, which will adversely affect health
status (Maas et al., 2001; Mattes, 2002).
All nurses will work with increasing numbers
of older adults simply because the population is aging
so rapidly. Even nurses who focus on maternal and
child or pediatric nursing are likely to encounter
grandparents in the course of their work more
often now than in the past, because of increased
longevity of grandparents and the increasing num-
bers of grandparents raising their grandchildren. As
discussed later in this chapter, more grandparents are
assuming parenting roles because their adult children
are unable to function as parents (Dolbin-MacNab,
2006; Uhlenberg & Kirby, 1998).
Family Structure
With increasing life expectancy, family relationships
now last for decades. It is common to see newspaper
photos of couples celebrating their 60th anniver-
saries, and to know “children” in their sixties or sev-
enties who have living parents. We now encounter
siblings with relationships of 90 years or longer; even
grandparent-grandchild relationships increasingly
extend five or more decades. These long-lasting re-
lationships with their histories of shared experiences,
traditions, and exchanges of help will most often be
an asset to the older adult as illnesses or functional
declines occur. With declining birth rates, however,
older adults in the future will have a smaller pool of
family members to draw on for help.
Gender Differences
Differences in life expectancy by sex influence family
structures and functions in old age. Women outlive
men across all ethnic groups and in all age groups.
Women are more likely than men to be widowed
throughout the life course, but especially in the
oldest age groups: 73% of very old women (those
85 years and older) and 35% of very old men are
widowed (Federal Interagency Forum on Aging-
Related Statistics, 2012). Living arrangements show
a similar pattern, with men more likely to live with
their spouses and women more likely to live alone
or with other relatives in advanced old age. As a
result, men are much more likely to have a spouse
caregiver than women (Connidis, 2010). Men are
much more likely than women to be married in old
age due to greater longevity for women and some-
what higher rates of remarriage after widowhood or
divorce for men. For example, more than 78% of
men 65 to 74 years old are married compared with
56% of women. By the time they reach old age, the
disparity is even greater; 58% of men 85 years and
older are married, whereas only 18% of women in
that age group are married (Federal Interagency
Forum on Aging-Related Statistics, 2012). Marital
status varies by ethnicity, with a greater proportion
of African American and Hispanic adults widowed
or divorced when compared to whites (Connidis,
2010). In addition, African Americans have greater
rates of cohabitation than the general population
throughout adulthood. Asian, African American,
Hispanic, and Native American elders are more
likely to live with nonspouse kin and less likely to
live alone than whites.
Financial Disparities
Women’s marital status is closely linked to financial
status in old age. Women, especially minority
women, experience significant losses in income and
net worth when their husbands die (Angel, Jimenez,
& Angel, 2007). Compared with men, today’s oldest
women have not had careers or worked in jobs with
pension benefits. Those with a history of low-wage
jobs, more frequent marital disruption, and fewer
opportunities to accumulate assets during their
working years are especially vulnerable. More than
10% of older women are poor compared with less
than 7% of men (Federal Interagency Forum on
Aging-Related Statistics, 2012). On average, Social
Security provides 60% of income for older women,
and it is the sole source of income for 20% of older
women (Herd, 2005). Disparities by race and eth-
nicity are even greater. For example, older African
American women are more than twice as likely to
live below the poverty level than are older white
women (Herd, 2005).
Marriage, Divorce, and Fertility
Divorce rates increased dramatically during the 20th
century, more than doubling between the 1960s and
1980s before stabilizing in the 1990s; most divorces
occurred in young or middle adulthood (Faust &
McKibben, 1999). As a result, only about 20% of
marriages are expected to survive for 50 years be-
cause of divorce or widowhood (Wu & Schimmele,
2007). Although many will enter old age as divorced
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persons, divorce occurring in late life is a growing
phenomenon, with many older adults no longer
willing to live another 20 or 25 years in an unsatis-
fying relationship. Reasons for late-life divorce are
similar to those found in other age groups, including
falling out of love, emotional or physical abuse, sub-
stance abuse, or infidelity. Women tend to leave
their spouses more frequently than men (Wu &
Schimmele, 2007).
This portrait of family structure will continue to
change as society changes. Cherlin (2010) described
several demographic trends in the first decade of the
century that will affect family life in old age in the
future. First, age at first marriage continues to rise,
particularly for those with college educations. Sec-
ond, although risk of divorce is beginning to de-
cline, the lifetime probability of divorce remains
between 40% and 50%. Like age at marriage, risk
of divorce is associated with education; those with
more education are less likely to divorce. Thus, we
see that experiences with family life will become
increasingly divided by educational and economic
status. Third, fertility rates in the United States, un-
like many developed countries, are at population re-
placement levels. Fertility varies among ethnic
groups, with the highest levels among Hispanic
populations with Mexican origins. Over the last sev-
eral decades, the number of children born outside
of marriage has increased significantly, accounting
for nearly 40% of all births in 2007. Fourth, cohab-
itation has become more common in all age groups.
We can no longer assume that those who are single
are without partners. Furthermore, increasing num-
bers of children are born to unmarried, and often
unpartnered women. Cherlin (2010) reported that
partnerships through cohabitation are less stable
than those of married couples. This has implications
for intergenerational family ties in old age. Other
recent trends include the growth of socially and
legally recognized same sex unions, increasing num-
bers of children who have a parent living in a dif-
ferent household, and a growing percentage of
foreign born (Cherlin, 2010). These changes mean
that older families of the future will be increasingly
diverse in terms of ethnicity, economics, structure,
and individual experiences with family.
Family Relationships
A prevailing myth in the United States is that
older adults, particularly those who are part of the
dominant culture, are isolated from and neglected
by their younger family members, and ultimately
are abandoned in nursing homes. Study after study
has demonstrated that most family ties are strong
and characterized by affection, caring, and many
shared values (Fingerman & Birditt, 2011; Rossi &
Rossi, 1990). Furthermore, families have demon-
strated remarkable adaptability to social change.
Although the family structure has changed in recent
decades, much about family life has remained the
same, including valuing families. Individuals con-
tinue to travel through life in the company of oth-
ers, which Antonucci and Akiyama (1995) described
as “social convoys.” Some people come and go in
our convoys, but many, especially family members,
remain constant social companions for decades.
Families value exchanges of emotional and practical
support throughout the life course (Sechrist, Suitor,
Pillemer, Gilligan, Howard, & Keeton, 2012;
Walker, Manoogian-O’Dell, McGraw, & White,
2001).
We now consider family ties in terms of same-
generation and intergenerational relationships.
Same-generation relationships include intimate
partnerships and sibling relationships. Intergener-
ational relationships examined in this chapter in-
clude parent-child and grandparent-grandchild ties.
Same-Generation Relationships
Intimate partnerships: In general, older adults
who are married or are in egalitarian relationships
have better physical health and psychological well-
being when compared to those who are single, wid-
owed, divorced, or separated (Connidis, 2010).
This is especially true for men and for couples who
report high-quality relationships (Bookwala, 2012).
Relationship quality is influenced by retirement
status, as well as by health, mental health, and care-
giving roles. All of these situations have the poten-
tial to influence relationships in negative ways. The
way one partner responds to a stressor such as
chronic illness influences how the other responds,
emphasizing the importance of focusing on family
and not just individuals when working with older
adults.
As a group, people who have never married tend
to have high levels of well-being, though they are
second in well-being to those in satisfying partner-
ships. Because those who have never married often
have a history of living alone, they typically have
higher levels of life satisfaction than those who are
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widowed, divorced, and separated. This is because
most have created satisfying and robust social net-
works, typically including close friends, siblings,
and other family members. It is important to em-
phasize that the “never married” group is becoming
more diverse. Particularly in future cohorts, we can
no longer assume that never married means un-
partnered or without children (Cherlin, 2010).
Those who have experienced dissolution of a
partnership, whether through divorce or widow-
hood, must adjust to living alone. This puts them
at greater risk of low morale and adverse health.
Divorce, particularly for men, can result in strained
relationships with adult children placing them at an
even greater risk of isolation in old age (Connidis,
2010). Older adults who are widowed or divorced
often form new relationships, frequently choosing
cohabitation over remarriage. A growing number
of older adults are also forming partnerships with-
out sharing a household, termed living apart to-
gether (LAT). This is often appealing to women
who value both autonomy and an intimate relation-
ship (Bookwala, 2012). Until recently, same-sex
couples did not have the option of marriage, so
formed cohabitating or LAT partnerships. Societal
attitudes are shifting, with marriage increasingly an
option for same-sex couples in many states and
countries.
Sexuality is central to intimate partnerships
throughout the life course regardless of gender or
partnership status. Women and men continue to
desire sexual relationships well into later life, with
many reporting increased freedom to explore sexu-
ality because of decreased concern over procreation
and decreased family responsibilities. Older adults
with partners tend to rate sex as important; most
couples who have been sexually active in middle age
tend to remain so in old age. Those who are sexually
active tend to report greater emotional and physical
well-being (Bookwala, 2012). Sexuality continues
into later life and is dependent on physical health,
quality and availability of relationships, change in
role from procreation to pleasure and validation, at-
titudes toward sexuality, societal influences, and
previous sexual experiences (DeLamater & Moor-
man, 2007). DeLamater and Moorman (2007) em-
phasized the danger of viewing sexuality from only
a biological or medical perspective, noting that at-
titude is more salient in predicting continued sexual
desire and behavior than presence or absence of
chronic illness or age. Nevertheless, advancing age
is associated with decline in sexual activity for many
people. Declines often result from lack of a partner,
typically through widowhood but also through di-
vorce or disability (e.g., Alzheimer’s disease). Poor
health is another common cause of decline in sexual
functioning. Schmall (1994), however, emphasized
that sexuality involves more than sexual intercourse,
highlighting the importance of intimacy, touch,
affection, body image, and one’s identity as a sexual
being. Sexuality, in intimate, same-generation part-
nerships, therefore, continues to be an important
part of life in spite of increasing frailty and depend-
ence. Loss of a partner through widowhood often
means the loss of all these different facets of sexual-
ity, facets that often are unrecognized or unac-
knowledged. DeLamater’s (2002) integrated model
of assessing sexuality in later life can aid nurses in
understanding the role of sexuality in the lives of
older adults. The model includes the following:
■ Biological influences: physical health (i.e.,
presence of chronic conditions that impact
sexual function or desire, or both), age,
hormonal levels, medical treatments that
may impact sexual function
■ Psychological: attitudes toward sexuality,
role of sexual relationships, knowledge, past
experiences, mental health
■ Social: availability of partner, including
duration and quality of relationship, societal
views and influences on sexuality in later
life, socioeconomic status
Siblings: Siblings represent important but often
overlooked same-generation family relationships
(Bedford & Avioli, 2012; Walker, Allen, & Connidis,
2005). They typically are the family tie of the
longest duration and, as such, siblings largely ex-
perience the same historical and social context.
As with all family relationships, identifying siblings
can be complex. They may include full biological
relationships, siblings through adoptions, half
or step siblings, and fictive relationships. With di-
vorce, there can also be relationships of “former
siblings.” In adulthood, family ties expand through
sisters- and brothers-in-law, and nieces and nephews,
relationships made possible through sibling ties.
Although often intense during childhood, many
sibling relationships become inactive in young
adulthood as people focus on their partners, chil-
dren, and career development. During middle and
late life, sibling ties are often reactivated as older
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adults have more time to devote to the relationship
and as aging parents require increasing assistance.
This illustrates both the voluntary and the obliga-
tory aspects of the sibling tie (Walker et al., 2005).
Siblings tend to feel obligations to work together
in support of aging parents and also respond to
each other in times of need. Conflicts, when they
do arise, appear to have roots in family history, and
may be related to differential treatment as children.
Of course, many siblings remain emotionally close
and interact frequently throughout their lives. Sib-
lings are most likely to report being close to a sister.
Throughout the life course, those who are unmar-
ried, without children, and live in close proximity
retain active ties to siblings. Having sibling rela-
tionships is associated with less loneliness in old age
(Bedford & Avioli, 2012).
Intergenerational Relationships
Intergenerational relationships may be of growing
importance in family life, particularly as divorce has
become more common (Sechrist et al., 2012). Most
older adults have one grown child who lives within
an hour’s drive. This has remained relatively con-
stant despite the often-cited geographical mobility
of younger generations. At the same time, adult
children with college degrees are more likely to live
farther away (Uhlenberg, 2004). Contact between
generations is common, with the majority of adult
children reporting contact with their parents at
least once a week. Contact with mothers is more
frequent than contact with fathers, and contact be-
tween mothers and daughters is the most common
intergenerational interaction, reflecting that the
strongest intergenerational tie is between mothers
and daughters. Contact between grandparents and
grandchildren is similar to that between parents
and adult children, with 66% of grandparents
living within an hour’s drive from at least one
set of grandchildren. The strongest predictor of
grandparent-grandchild relationships is the quality
of relationships between parents and grandparents
(Monserud, 2008; Thiele & Whelan, 2006). The
amount of contact by adult children is influenced
by parental marital status, with the lowest contact
being with fathers who are widowed, divorced, or
remarried, and with remarried mothers.
Relationship quality is as important as contact.
Feelings of closeness between generations are the
norm, with most adult children reporting feeling
very close to parents, especially to mothers. The
older generation even more frequently reports feel-
ing very close to their adult children. When adult
children report that they are not close to their par-
ents, they are more likely to be describing their re-
lationships with their fathers than their relationships
with their mothers (Silverstein & Bengtson, 1997).
Exchanges of help and support between generations
occur throughout the life course and are motivated
by affection, as well as by a sense of obligation. Until
late old age, older adults provide more help than
they receive in all areas of support, including caring
for family members, financial support, and instru-
mental support (Sechrist et al., 2012). We explore
exchanges among generations further in our discus-
sion of caregiving later in the chapter.
Significant intergenerational family relationships
include grandparents and grandchildren. Almost all
older adults with children are likely to become
grandparents, usually around age 50, although the
transition can occur both earlier and later in the life
course. It is a role that is contingent on the actions
of others for timing, number, location, and amount
of contact (Hayslip & Page, 2012; Thiele & Whelan,
2006). Sometimes called a “roleless role,” grandpar-
ents often create their role within the family based
on the family’s stage in the life course and the family
history of grandparenting roles. Grandparents are in-
fluenced by experiences with their own grandparents
and with their parents as grandparents. Also, rela-
tionships with grandchildren are strongly shaped by
the quality of relationships with adult children.
When the grandparent-parent relationship is strong,
grandparents and grandchildren are also likely to
enjoy strong connections. If the role is perceived to
come too early, as in the case of teenage pregnancy,
the transition to grandparenthood may be altered by
disappointment, anxiety, and emotional and financial
distress.
As in other family relationships, the ways that
grandparents relate to grandchildren vary widely
among families (Silverstein & Marenco, 2001; Stelle,
Fruhauf, Orel, & Landry-Meyer, 2010; Thiele &
Whelan, 2006). Most older adults, however, find
grandparenting meaningful and experience the role
with both satisfaction and pleasure (Roberto, 1990;
Szinovacz, 1998). Grandparents are often an impor-
tant resource for their adult children. For example,
they are a major provider of child care when grand-
children are young (Luo, LaPierre, Hughes, &
Waite, 2012; Vandell, McCartney, Owen, Booth, &
Clarke-Stewart, 2003). With the aging of both
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grandparents and grandchildren, the nature of rela-
tionships will change. Older grandparents, for ex-
ample, are more likely to provide money and gifts as
grandchildren get older rather than direct care
(Thiele & Whelan, 2006).
Family Ambivalence and Conflict
Although family relationships are generally strong
and characterized by affection and caring, family
gerontology researchers have increasingly focused
on the complexity of family life. The concept of
ambivalence has received increasing attention, rec-
ognizing that family members simultaneously hold
positive and negative feelings about one another,
often as a result of contradictory roles (Connidis &
McMullin, 2002; Katz, Lowentstein, Phillips, &
Daatland, 2005; Pillemer & Suiter, 2005; Sechrist
et al., 2012). Fingerman (2001) found adult daugh-
ters tended to express more ambivalence about
their mothers than mothers expressed about their
daughters. Pillemer and Suitor (2005) report that
the majority of parents felt “torn in two directions”
about their adult children. They found that am-
bivalence was frequently related to their adult chil-
dren’s achievements, particularly achievements of
their oldest child. More ambivalence was expressed
toward those who did not attain normative adult
statuses, such as completing college, getting mar-
ried, or becoming financially independent. Peters,
Hooker, and Zvonkovic (2006) conclude that am-
bivalence is a normal part of family life. In their
study, older adults experienced ambivalence sur-
rounding their adult children’s busy lives and
boundaries related to communication (e.g., holding
back on opinions and feelings about being left out).
Older adults had uncertainties about the availability
of help from children should they need it, though
Peters and her colleagues found that those who
needed help received it.
Though less common than ambivalence, family
conflict, or negative social interactions, can have
serious consequences for family relationships. Fur-
thermore, negative aspects of relationships may
lead to poorer health, and may decrease the
amount and quality of support available when
needed (Lachman, 2003; Rook, 2003). Newsom,
Rook, Nishishiba, Sorkin, and Mahan (2005) re-
ported on a growing body of research that de-
scribes the disproportionate effect of negative
social exchanges on psychological health when
compared with positive social exchanges. They
found that failure of those in one’s social network
to provide help when it was needed was evaluated
most negatively. Umberson, Williams, Powers,
Liu, and Needham (2006) examined marriage qual-
ity and health over the life course, finding that poor
marriage quality was associated with accelerated
health declines in old age. They suggested that
stress related to marital conflicts undermines im-
mune functioning and has a cumulative effect on
health over time. Conflicted families are less likely
to provide assistance to each other throughout the
life course and may have little contact, share few
values, and generally are more detached. As such,
they are less likely to be resources to older family
members in need (Scharlach, Li, & Dalvi, 2006).
Divorce is often a factor in these situations and
has implications for intergenerational relationships
throughout the life course. Although not focusing
on conflict specifically, Bucx, van Wel, Knijin, and
Hagendoorn (2008) reported less contact by adult
children with divorced mothers and fathers. More-
over, mothers may be mediating relationships be-
tween fathers and adult children, as indicated by
increased contact between adult children with wid-
owed mothers, but not with widowed fathers. Less
contact was also reported with divorced and remar-
ried fathers, although no differences were found in
contact with widowed and remarried mothers
(Bucx et al., 2008). Those who are most vulnerable
with respect to family relationships, therefore, are
divorced men. They may have fewer ties that con-
nect them to informal care and may rely more on
formal services, such as nursing homes, than their
married counterparts.
An extreme consequence of family conflict is
elder abuse or mistreatment. Elder mistreatment
includes physical pain or injury, psychological an-
guish, neglect or abandonment, and financial ex-
ploitation. Estimates of prevalence of all types of
mistreatment range from 1.3% to 10% of older
adults (Fulmer, Guadagno, Bitondo, & Connolly,
2004; Teaster, Wangmo, & Vorsky, 2012). Most
perpetrators are adult children, although other
family members, paid caregivers, and predatory ac-
quaintances may be abusers. Causes of mistreat-
ment remain poorly understood, but risk factors
include unhealthy dependency of the perpetrator
on the victim; disturbed psychological state of the
perpetrator; frailty, disability, or impairment of the
victim; and isolation of the family (Wolf, 1996).
Risk of abuse increases with age and women are
486 Nursing Care of Families in Clinical Areas
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more likely to be victims. Beach, Schulz, Castle,
and Rosen (2010) also found that African American
elders were at greater risk for both financial ex-
ploitation and psychological mistreatment. Most
abuse occurs in domestic settings; those living
alone are at greatest risk for financial exploitation
(Teaster et al., 2012).
In addition to mistreatment by family members,
frail older adults are also at risk for mistreatment by
care providers. Nurses and other professionals have
a responsibility to screen and assess elders for abuse.
Fulmer (2012) reviewed and evaluated several as-
sessment tools. One of the recommended tools is
the Elder Assessment Instrument, which can be
found on the Try This section of the Hartford In-
stitute for Geriatric Nursing (HIGN) Web site
(Fulmer, 2012).
As illustrated by the discussions on ambivalence
and conflict, it is evident that many family rela-
tionships are complex and the strengths of associ-
ation may vary considerably over time. To add to
the complexity, levels of ambivalence and conflict
vary within families (Sechrist et al., 2012). An in-
dividual may have conflicted feelings about one
family member and close, affectionate feelings
about another. Both ambivalence and conflict may
be apparent for nurses and other health providers
when an older adult needs care. Nurses should be
aware that the families vary considerably with re-
spect to the quality of relationships and the avail-
ability of family resources in times of crisis and
health decline. Nurses must be sensitive to under-
lying tensions and be able to provide support in
nonjudgmental ways, remembering that the cur-
rent family dynamics are embedded in a lifetime
of relationships and actions.
FAMILY CAREGIVING
As described previously, family life is characterized
by exchanges of help and support throughout the
life course. Until very old age, parents are more
often givers than receivers in this exchange, regard-
less of income. They provide financial assistance to
younger adults in college or those who are making
major purchases such as cars or homes (Bengtson
& Harootyan, 1994). Grandparents are a frequent
source of childcare for grandchildren, particularly
in their first 3 years (Vandell et al., 2003). They
provide child care for their grandchildren while
their adult children work or are unable to care for
their children because of illness or planned ab-
sences (e.g., vacations). Less typical is providing
care for dependent adult children with cognitive
or physical disabilities. In some cases, caring for
dependent children can be a lifelong role (Bilmes,
2008; Pruchno & Meeks, 2004; Seltzer, Greenberg,
Floyd, & Hong, 2004; Yeoman, 2008). Grandpar-
ents also are often a source of stability when parents
divorce. Growing numbers of grandparents are fill-
ing parenting roles for grandchildren because their
parents are unable or unwilling to fulfill their
parental obligations (Hayslip & Kaminski, 2005).
Regardless of the type of care provided, family
caregiving grows out of ongoing family relation-
ships and refers to support given to those who are
dependent on that support for everyday functioning
(Pruchno & Gitlin, 2012; Waldrop, 2003). The tran-
sition from the normal and mutual aid to support that
is defined as caregiving is often a gradual process.
Many wives, for example, do not describe what they
do as caregiving, because the work they do in support
of their increasingly dependent husbands is part of
their ongoing family roles related to meal prepara-
tion, housework, and laundry. Walker, Pratt, and
Eddy (1995) noted that adult daughters do similar
things for dependent mothers as they do for mothers
who are more self-sufficient, including running er-
rands, preparing meals, and assisting with house-
work. Caregiving may simply mean “keeping an eye
on” an older adult to monitor well-being (Messecar,
2012). As dependency increases and more time is
spent on providing support, the family member and
now caregiver recognizes that the care recipient is no
longer able to perform these tasks without help.
In contrast to a gradual process, transitions to
caregiving can happen suddenly if an otherwise
healthy older adult has a traumatic injury, or expe-
riences a stroke or cardiac arrest. For many older
adults, a health crisis may signal a sudden end to in-
dependence or ability to live alone. In this case, a va-
riety of decisions are made regarding informal and
formal care services. Depending on the situation, in-
cluding the nature of the disability, availability of
services, and personal resources, the older person
may receive support services in several different set-
tings. About half (51%) receive care in their own
home, and about a third live in the caregiver’s home
(National Alliance for Caregiving & AARP, 2009).
Others move into supported living situations, such
as assisted living or nursing homes.
Family Health in Mid and Later Life 487
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Whether the onset of caregiving is sudden or
gradual, most caregivers are family members, ac-
counting for 80% to 90% of care received by older
adults (Pruchno & Gitlin, 2012). Few older adults
who live in their own or in their caregiver’s home
rely on formal services, with 35% using any type of
paid care, such as a housekeeper or aide (National
Alliance for Caregiving & AARP, 2009). Those with
higher incomes are more likely to use paid help.
Estimates of the prevalence of caregiving range
widely depending on how caregiving is defined.
Care may support IADLs, which consist of func-
tions related to laundry, housekeeping, transporta-
tion, food preparation, shopping, handling finances,
using the phone, and medication management
(Graf, 2007). Increasing dependency requires care
specific to ADLs, which involve intimate, personal
care related to bathing, dressing, eating, toileting,
transferring, and mobility (Wallace & Shelkey,
2007). Messecar (2012) reported that between 22.4
and 52 million people provide some care to family
members every year. The smaller estimates are re-
lated to the more intense ADLs care, whereas the
larger estimates include those who receive assis-
tance with IADLs only. Combining all levels of
care, Reinhard, Given, Petlick, and Bemis (2008)
cited the statistic of 44 million caregivers, about
20% of the adult population. The National Alliance
for Caregiving and AARP (2009) estimate that
nearly a third of U.S. households (36.5 million) have
a caregiver present. Indeed, caregiving is now con-
sidered an expected role in middle and late life.
Clearly, providing care to an older adult is becom-
ing part of the normative life experience in families;
most adults will experience caring for another adult
family member at least once in their lifetime
(Pruchno & Gitlin, 2012).
Most caregivers are middle-aged or older and
are most likely to be wives and daughters, although
men are increasingly assuming this role. Research
has shown consistently that women provide more
personal care, more hours of caregiving, and more
housekeeping, whereas men provide financial assis-
tance (such as money management), make arrange-
ments for formal care, and do home and yard
maintenance work. These historically gendered
roles, however, are becoming less distinct. Reinhard
et al. (2008) report a 50% increase between 1984
and 1994 in the number of caregiving men who
provide physical care. Similarly, Neal and Hammer
(2007) reported that men in dual-earner couples
were taking on substantially more parent care re-
sponsibilities, including ADLs care, although their
wives were providing about 2 more hours of care-
giving per week than husbands. The trend of in-
creasing involvement by men in all facets of
caregiving likely will continue as the number of
older adults needing support increases.
Duration of caregiving may last for days or
decades, with the average length of time 4.6 years;
15% of caregivers have been providing care for
10 years or longer. About half of caregivers provide
8 hours of care or more each week, with 26% of
caregivers providing 21 hours or more (National
Alliance for Caregiving & AARP, 2009). As in
families described by Neal and Hammer (2007),
working couples are often involved in providing
parent care for more than one person, such as pro-
viding care to both parents or to one’s parent and
a parent-in-law. The Hooper family case study
below illustrates such multiple caregiving demands
as Maria provides care to both her father and her
mother-in-law.
Estimates of the value of unpaid family care are
difficult to determine and are as high as $375 billion
annually (Pruchno & Gitlin, 2012). Out-of-pocket
medical expenses are 2.5 times greater for caregivers
than noncaregivers (Family Caregiver Alliance,
2006). Furthermore, caregiving often results in lost
income if spouses and adult children leave the work-
force early to care for older family members. Those
who maintain their jobs often lose time and, there-
fore, wages, promotions, or other job opportunities
because of parent care responsibilities. As discussed
earlier, the loss of income may be particularly diffi-
cult for those with low incomes to begin with. Fam-
ily members are often faced with the difficult
decision of having less income due to less time in
the workforce versus dealing with the expense of
paid care either in the home or at a residential care
facility.
Family Caregiving Roles
Family roles, like family structure, have shifted
across time. Major changes in mid and late life
frequently include an increase in caregiving. This
section focuses on caregiving for older adults
by spouses and adult children, caring for grand-
children, and care for disabled adult children. It
also covers ways in which nurses can support
caregivers.
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Caring for Older Adults
The experience of caregiving differs by role.
Spouses are generally the first line of caregivers.
Because women live longer than men, wives are
more likely than husbands to become caregivers.
Spouse caregivers, in particular, may have their
own health concerns that are exacerbated by strains
related to caregiving. Messecar (2012) reported
that caregiving spouses have a 63% greater mortal-
ity rate than others their age who are not care-
givers. At times, the spouse who is designated as
caregiver is also in need of support services. It is
not unusual for husbands and wives to support each
other; they are both caregivers and care recipients.
These situations are often tenuous but can work for
a while. Spouses typically experience greater bur-
den and depression than adult children who pro-
vide care (Messecar, 2012). Spouses are more likely
to experience chronic illnesses and frailty them-
selves. Because spouse caregivers typically live with
the care recipient, they are at risk for not getting
rest, not having time to recuperate from illnesses,
and experiencing health declines. This is particu-
larly true if the person they are caring for has
Alzheimer’s disease or some other kind of dementia
(Reinhard et al., 2008). Those who care for some-
one with dementia are at increased risk for depres-
sion, greater levels of stress, and lower levels of
subjective well-being, especially wives (Pinquart &
Sorensen, 2006).
Adult children, especially daughters, experience
the stresses of care in other ways. More than half
are working while providing care, and make a
range of adjustments at work. This may include
going in late or leaving early, cutting down on
hours worked, or leaving the labor force entirely
(National Alliance for Caregiving & AARP, 2009).
Adult children have to balance caregiving and
other family obligations. Some are doing substan-
tial caregiving for parents while caring for young
children at home (Neal & Hammer, 2007).
Grandchildren may also participate in providing
care to their grandparents as they age, especially if
their mothers are primary caregivers. The ways
that grandchildren cope with this caregiving role
is influenced by their previous relationships with
their grandparents (Stelle et al., 2010).
Caregiving is influenced by culture. It is impor-
tant to be aware of and sensitive to possible ethnic
differences in caregiving experiences and resources.
At the same time, it is important not to stereotype
and make assumptions based on race or ethnicity.
More differences are found within ethnic groups
than between them. With that caution, Dilworth-
Anderson et al. (2002) argue that “culture affects
caregiving experiences. Findings on values and
norms provide evidence that individuals and groups
use explicit rules and guidelines that influence who
provides care to elders as well as interactions
between caregivers, family members, and social in-
stitutions” (p. 264). From their review of the liter-
ature, it appears that minority caregivers often have
a more diverse group of extended helpers than do
white caregivers. But although more people might
be involved in providing care to a dependent family
member, minority caregivers are no more likely
to feel supported by their social network than are
caregivers from the dominant culture. Whites
are more likely to care for a spouse, which is related
to whites having more married couples in later
life and a longer life expectancy for men. African
Americans are more likely to include church con-
nections to assist with caregiving tasks. They
are also more likely to have a network of kinship
relationships that assist with caregiving. African
Americans and Hispanics are least likely to use
formal services and yet are most likely to express
the need for assistance with caregiving responsibil-
ities. Cultural values do influence who takes on
the leadership role of caregiving within a family
(Dilworth-Anderson et al., 2002). These values are
affected by a sense of filial obligation and a sense
of responsibility, cultural norms regarding who
provides care (i.e., daughter or daughter-in-law),
values of giving back, culturally based illness mean-
ings (e.g., a view that disease is normal or that there
is a stigma), and larger belief systems such as reli-
gion. Because of poorer health status found in most
minority populations, caregiving often begins at a
younger age, but the duration is shorter.
African American caregivers are more likely to
have children younger than 18 years living in the
household than other ethnic groups. They are
more likely to be working and caring for a family
member, and also spending more time and money
to support the person they care for. This commit-
ment contributes to the financial burden for the
family, increasing their risk for living at a low so-
cioeconomic level. African American caregivers
are more likely to say caregiving is a financial hard-
ship. Asian American caregivers are found, as a
rule, to have more education and higher incomes
Family Health in Mid and Later Life 489
3921_Ch15_477-520 05/06/14 11:18 AM Page 489
when compared with other racial ethnic groups.
This group is less likely to report emotional stress
and be more able to pay for assistance with care-
giving. White caregivers tend to be older and also
living in a higher income bracket when compared
with other racial groups (Dilworth-Anderson
et al., 2002).
Our discussion of providing care to frail older
adults reflects research in this area, as well as the
population most at need of family caregiving
(Riebe et al., 2009). It is important to emphasize,
however, that many older adults are primary care-
givers of younger members of their families.
Grandparents Caring for Grandchildren
Unlike caregiving for older adults, which often
evolves over time, grandparents may suddenly find
themselves in the role of raising their grandchil-
dren. This may occur when teenagers have children
or as a result of traumatic circumstances surround-
ing the parent generation, including divorce, sub-
stance abuse, incarceration, child abuse or neglect,
or death (Hayslip & Page, 2012). The number of
grandparents who are raising their grandchildren
has risen dramatically, increasing 30% between
1990 and 2000 (Hayslip & Kaminski, 2005).
According to census data reported in 2006, about
2.4 million grandparents are in this position
(Goodman, 2012). Lumpkin (2008) reported 11%
of grandparents in the United States were parent-
ing their grandchildren. The trend continued from
2000 to 2008, with increases of another 8%. Most
of that occurred from 2007 to 2008 (Luo et al.,
2012). These grandparent-grandchild families are
more likely to live below the poverty line and lack
health insurance. Some grandparents leave the
workforce to care for grandchildren, whereas oth-
ers feel that they cannot retire for financial reasons.
Grandparent caregivers are most often women, are
in poorer physical health, and have a greater inci-
dence of depression than other grandparents.
Ongoing conflict with adult children (parents of
their grandchildren) is common, with accompany-
ing feelings of disappointment, resentment, feeling
taken advantage of, and grief. If parents have been
substance abusers, grandchildren may have physical
and behavioral problems that cause further anxiety
for grandparents (Hayslip & Kaminski, 2005;
Leder, Grinstead, & Torres, 2007).
Many custodial grandparents are saddened by
the loss of the traditional grandparent role that
emphasizes indulgence and fun, instead of being
responsible for discipline, financial support, and a
myriad of activities related to daily care. Caregiving
grandparents may be isolated from their age peers
who are pursuing more traditional grandparent-,
work-, or retirement-related activities. They also
may have little in common with the parents of their
grandchildren’s friends (Landry-Meyer & Newman,
2004). Most grandparents who raise grandchildren
are non-Hispanic whites, yet the largest propor-
tion of any ethnic or racial group of grandparents
raising grandchildren are African Americans. African
American and Latino grandparents are more likely
to assume the responsibility because of economic
conditions and teen pregnancies, whereas white
grandparents are more likely to be parenting because
of substance abuse by their adult children. White
grandparents are also more likely to report greater
levels of burden and more intergenerational conflict
than those in other ethnic groups. This may be be-
cause of combined circumstances of normative ex-
pectations and issues related to substance abuse
(Goodman & Silverstein, 2006).
As with caregiving in general, grandparents
and their grandchildren experience many benefits
from grandparents parenting. Grandparents are
often a stabilizing influence, and their grandchil-
dren generally do well in school, are less likely
to be on welfare, and have fewer negative behav-
iors. Grandparents, in spite of their grief and the
burdens associated with care, report benefits such
as realizing their inner strength, close relationships
with their grandchildren, and a sense of accom-
plishment and purpose (Hayslip & Kaminski, 2005;
Waldrop, 2003). Goodman (2012) followed grand-
mothers raising grandchildren over 9 years. She
found that those who had close relationships with
their grandchildren did not experience many of the
negative consequences described earlier, suggesting
that interventions that support these relationships
are particularly important.
Older Adults Caring for Adult Children
Much of the literature addresses parents caring for
adult children with developmental disabilities or
mental illness. Seltzer and her colleagues have fol-
lowed aging mothers of adults with mental retar-
dation or severe mental illness for many years.
Their research indicates many similarities and also
some important differences between these mothers
(Seltzer et al., 2004; Seltzer, Greenberg, Krause, &
490 Nursing Care of Families in Clinical Areas
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Hong, 1997). The onset of disability occurred at
different times in the life course—at birth for those
with mental retardation and in young adulthood for
those with mental illness. Mothers of those with
mental retardation experienced more gratification
and less subjective burden than mothers of those
with mental illness. They also received more social
support and had developed more effective coping
skills. Mothers of children with mental illness ex-
perienced greater levels of stress and burden. The
course of the child’s illness was less predictable,
sometimes involving repeated crises involving hos-
pitalization or incarceration. As mothers of dis-
abled children aged, they required additional
supports, including placement of their children in
residential care. Reasons leading to placement var-
ied. For mothers of children with mental retarda-
tion, placement often occurred because of poor
health and mother’s declining abilities. Mothers in
both groups maintained a high frequency of con-
tact with their disabled child (Seltzer et al., 1997).
Magana, Seltzer, and Krauss (2002) focused on
Latino populations, finding that they had higher
service needs than the general population, in part
because of lack of knowledge and the difficulty of
navigating the system. When programs were cul-
turally sensitive and provided opportunities for
peer support, however, Latinos did increase use of
services.
The consequences of a lifetime of caring for an
adult child with intellectual or developmental dis-
abilities are significant. Although Seltzer, Floyd,
Song, Greenberg, and Hong (2011) found similar-
ities to parents of children with no disabilities with
respect to health, attainment, and life satisfaction
in midlife, they did find parents of those with
disabilities differed with respect to lower employ-
ment levels for women and lower social participa-
tion rates. These patterns continued as parents
entered their sixties. This was especially true for
those who continued to co-reside with their chil-
dren. Challenges included higher rates of depres-
sion, divorce, widowhood and poorer physical
health and functional status when compared to
other parents whose children did not have disabil-
ities (Seltzer et al., 2011).
Many parents are finding themselves caring for
disabled war veterans as an aftermath of the Iraq
and Afghanistan wars (Yeoman, 2008). As of No-
vember 2009, over 36,000 servicemen had been
wounded and many more are likely to suffer ill
effects from traumatic brain injury, post-traumatic
stress disorder, depression, and other conditions
that lead to chronic disability. For example, over
106,000 received mental health diagnoses follow-
ing deployment (Institute of Medicine, 2010).
Nearly half of the soldiers in the armed forces are
not married, so when they are disabled, their par-
ents are most likely to become caregivers and ad-
vocates. Parents of soldiers, who are themselves
parents, may also see increased involvement with
their grandchildren during deployment and, in the
case of disability and death, a greater role in raising
grandchildren (Yeoman, 2008).
Nursing Role in Assessing and
Supporting Caregivers
Much of the care and support that older adults re-
ceive is related to needs associated to chronic illness
or disability. Long-term services and supports en-
compass a wide range of services, both paid and un-
paid. Although the term long-term care (LTC) is
sometimes used interchangeably with nursing home
care, nursing homes represent only one type of
LTC service. A variety of community-based care
services are available, including in-home care, sup-
portive housing, adult day care, and a range of res-
idential care settings. Residential care includes
assisted living, board and care, and adult foster
homes (Stone, 2006). Nurses may work with older
adults and their family caregivers in all of these set-
tings. Family caregivers are particularly important
during times of transition. This includes transitions
from one care setting to another, as well as the
transition from good health and independence to
increasing disability, frailty, and dependence
(Gitlin & Wolff, 2011). Little is known about how
these transitions are experienced by family systems,
but we do have knowledge regarding caregiver
needs and supports.
Eliopoulous (2009) described a continuum of care
with three points. On one end are older adults who
are able to live independently and receive preventive
services provided in communities. In the middle are
those who require partial or intermittent assistance
to manage health and self-care needs. Examples
are older adults receiving home health care or resid-
ing in assisted living communities (see Boxes 15-1
and 15-2 for descriptions of these and other serv-
ices). Intermittent assistance also includes care pro-
vided to those who are admitted to a long-term care
Family Health in Mid and Later Life 491
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492 Nursing Care of Families in Clinical Areas
BOX 15-1
Home- and Community-Based Services
orders. Generally these services are limited to 60 or fewer
days. Home care services are often limited to personal
care assistance services, such as bathing and dressing,
and may include homemaker services, such as meal
preparation or household chores.
Homemaker or Chore Services
Homemaker or chore services help with your general
household activities, such as meal preparation and
routine household care, and sometimes heavier house-
hold chores, such as washing floors or shoveling snow.
Home Modifications
Home modifications support continued independent liv-
ing at home. Some examples include building a wheel-
chair ramp or installing handrails in a shower or tub,
modifications that are typically done by a contractor.
Meals Programs
Meals programs, such as meals-on-wheels, deliver
meals directly to a person’s home or provide
communal meals.
Respite Care
Respite care gives unpaid caregivers time off from their
responsibilities. Respite care is offered in the home, adult
day centers, and nursing homes.
Senior Centers
Senior centers provide nutritional, recreational, social,
and educational services. They provide comprehensive
information and referrals to help find needed care and
services.
Transportation Services
Transportation services provide transportation to medical
appointments and shopping centers. They can transport
people to community services and resource centers.
Villages
Villages are private membership programs in communities
that provide or arrange assistance with activities, such as
basic home health, lawn and garden care, transportation,
and grocery shopping.
Source: Adapted from National Clearinghouse for Long-Term Care (Administration on Aging). (2013). Understanding
long-term care. Retrieved February 12, 2013, from http://www.longtermcare.gov/LTC/Main_Site/Understanding/
Services/Home_Community_Services.aspx
facility for rehabilitation or recovery from an acute
illness with the intent to return to their prior living
situation. At the other end of the continuum are
older adults who need regular and continuous assis-
tance during hospitalization for an acute condition
or need to reside permanently in a nursing home due
to significant limitations in their ability to manage
their health and self-care needs.
Because many family caregivers are unprepared
for their role, they are at risk for negative outcomes.
Home- and community-based services (HCBS) include a
range of personal, support, and health services provided in
the home or community to help individuals stay at home
and live as independently as possible. These services are
often provided by family caregivers, but can also be provided
by a variety of home- and community-based providers.
Home- and community-based services include the following:
Adult Day Service Programs
Adult Day Service (ADS) programs provide social interac-
tion and a safe place for people to go while family care-
givers are at work. ADS programs may also provide a
variety of health, social, and other support services in a
protective setting. Most operate during normal business
hours. Some have evening, night, and weekend hours,
but these programs do not provide 24-hour care.
ADS programs include health model and social mod-
els. The health model provides some health care services
onsite. The social model provides social services, such as
exercise classes or arts and crafts. Some programs offer
both types of services.
Case Managers or Geriatric Care Managers
Case managers or geriatric care managers are typically
nurses or social workers who can help individuals and fami-
lies choose and manage long-term care services, develop a
plan of care, and monitor long-term care needs over time.
Emergency Response Systems
Emergency response systems provide a signaling device
you can wear at home. If there is a medical or other
emergency, the person presses a button to alert an
operator who contacts emergency personnel. This can
be especially useful for those who live alone.
Friendly Visitor and Companion Services
Friendly visitor and companion services can provide visi-
tors who regularly spend time with individuals who are
frail or living alone so that they do not become isolated.
Home Health Care and Home Care
Home health care services typically offer skilled services
such as the nursing and physical therapy that your doctor
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Family Health in Mid and Later Life 493
BOX 15-2
Facility-Based Long-Term Care Options
Services provided by long-term care facilities vary by type
of facility. All facilities provide housing and related house-
keeping services. Some also provide help with managing
medications, assistance with personal care, supervision,
special programs for people with Alzheimer’s disease, or
24-hour nursing care. Typically, the state in which the
facility is located will regulate which services are offered.
For example, some states do not allow some types of fa-
cilities to include residents who are wheelchair bound or
who cannot exit the facility on their own if there is an
emergency. Facility-based service providers include the
following:
Adult Foster Care
Adult foster care programs match people who cannot live
safely on their own with a foster family that provides room
and board 24 hours a day and helps with personal care
activities such as bathing, eating, and medication. Foster
families may take one person or a small group of adults.
Licensure requirements and the terminology used for this
type of facility vary greatly from state to state.
Board and Care Homes
The two main types of board and care homes are residen-
tial care facilities and group homes. Residential care facili-
ties usually have 20 or fewer residents. Most group homes
have six or fewer residents. Both types provide meals,
personal care, and a 24-hour staff. These homes generally
do not offer nursing and medical services. Rooms may be
private or shared. State licensing requirements and the
names for these types of facilities vary greatly.
Assisted Living
Like board and care homes, assisted living is designed for
people who want to live in a community setting but need
help with personal care, other daily activities, or supervision,
but who do not need as much care as that provided by a
nursing home. In general, assisted living facilities are larger
than board and care homes. Residents often live in their
own apartment or room, though this varies by state.
Services provided typically include meals, assistance with
personal care, help with medications, housekeeping, and
laundry, 24-hour security, onsite staff for emergencies, and
social programs. Some AL provide ADL support. The cost of
assisted living depends on the kinds of services you need
and the types of amenities the facility provides. Regulations
for assisted living facilities vary greatly among states.
Continuing Care Retirement Communities
Continuing care retirement communities offer several
levels of care in one location. They offer a mix of inde-
pendent housing (for people who need little or no care),
assisted living, and nursing facilities for those who need
more care and supervision. If you live in the independent
housing unit of a CCRC and become unable to live inde-
pendently, you can either receive help there or move to
the assisted living area. If necessary, you can enter the
onsite or affiliated nursing home. The fee arrangements
for CCRCs vary and include both a monthly fee and an
entrance fee.
Nursing Homes
Nursing homes, also called skilled nursing facilities
(SNFs), provide a range of services, including nursing
care, 24-hour supervision, and assistance with ADLs. They
also offer rehabilitation services such as physical, occupa-
tional, and speech therapy. Nursing home services may
be needed for a short period of time for recovery or reha-
bilitation after a serious illness or operation. Longer stays
are common when chronic physical health problems or
cognitive problems (e.g., memory loss) make it necessary
for 24-hour care or supervision.
Source: Adapted from National Clearinghouse for Long-Term Care (Administration on Aging). (2008). Understanding
long-term care. Retrieved February 12, 2013, from http://www.longtermcare.gov/LTC/Main_Site/Understanding/
Services/Facility_Based_Services.aspx
The degree of risk is influenced by the context of
caregiving, including family history and dynamics,
the nature of impairment (such as physical care
needs compared to behavioral problems related to
dementia), the level of care recipient dependency,
and a wide range of personal and financial re-
sources. Messecar (2012) identified seven categories
of nursing care strategies for working with family
caregivers (Box 15-3). To be effective, these strate-
gies must be based on a thorough assessment and
tailored to the individual caregiving situation. Yet
needs of caregivers are not assessed routinely, and
caregivers remain at risk for burnout and care re-
cipients at risk for not receiving appropriate care,
either at home or in another setting.
When nurses assess family caregiving situations,
they tend to focus on ADLs (bathing, dressing,
eating, toileting, hygiene, and mobility) and IADLs
(shopping, managing finances, meal preparation,
driving, and managing medications). ADLs are
3921_Ch15_477-520 05/06/14 11:18 AM Page 493
494 Nursing Care of Families in Clinical Areas
useful for determining how much physical assis-
tance a care recipient may need from the caregiver.
IADLs may determine whether an individual can
live independently in the community. For example,
a person may have significant mobility problems
but if she has the ability to plan and direct care
through execution of IADLs, it may be possible to
remain at home. In any event, Reinhard et al.
(2008, p.2) recommend that assessments be done
for families as clients and for families as providers
of care, and that assessments go beyond a listing of
needs related to ADLs and IADLs for the following
reason:
Those concepts do not adequately capture the com-
plexity and stressfulness of caregiving. Assistance
with bathing does not capture bathing a person
who is resisting a bath. Helping with medications
does not adequately capture the hassles of medica-
tion administration, especially when the care recip-
ient is receiving multiple medications several times
a day, including injections, inhalers, eye drops, and
crushed tablets.
Limiting assessment to ADLs and IADLs also
neglects to acknowledge the role nurses play in
helping family members manage multiple and
chronic illnesses.
To address the lack of systematic attention to
assessing caregiver needs, the National Center on
BOX 15-3
Nursing Care Strategies to Support
Caregivers
1. Identify content and skills needed to increase pre-
paredness for caregiving.
2. Form a partnership with the caregiver before gener-
ating strategies to address issues and concerns.
3. Identify the caregiving issues and concerns on which
the caregiver wants to work and generate strategies.
4. Assist the caregiver in identifying strengths in the
caregiving situation.
5. Assist the caregiver in finding and using resources.
6. Help caregivers identify and manage their physical
and emotional responses to caregiving.
7. Use an interdisciplinary approach when working with
family caregivers.
Source: Messecar, D. C. (2012). Family caregiving. In M. Boltz, E.
Capezuti, T. Fulmer, & D. Zwicker (Eds.), Evidence-based
geriatric nursing protocols for best practice (4th ed.).
New York, NY: Springer.
Caregiving at the Family Caregiver Alliance identi-
fied “Fundamental Principles for Caregiver Assess-
ment” (Box 15-4). Domains to be included in
assessments are context; caregiver perception of
health and functional status of the care recipient;
caregiver values and principles; well-being of the
caregiver; consequences of caregiving; skills, abili-
ties, and knowledge to provide care; and potential
resources that the caregiver could choose to use
(Family Caregiver Alliance, 2006). Examples of as-
sessment tools are presented in Box 15-5. Some of
these are specific to nursing and/or specific settings.
Multiple interventions have been developed and
tested to address the needs of caregivers, both as
clients and as providers. In a meta-analysis, Pinquart
and Sorensen (2006) identified six types of interven-
tions: (a) psychoeducational, (b) cognitive-behavioral
therapy (CBT), (c) counseling/case management,
(d) support—training the care recipient, (e) respite
BOX 15-4
Fundamental Principles for Caregiver
Assessment
1. Because family caregivers are a core part of health
care and long-term care, it is important to recognize,
respect, assess, and address their needs.
2. Caregiver assessment should embrace a family-
centered perspective, inclusive of the needs and
preferences of both the care recipient and the
family caregiver.
3. Caregiver assessment should result in a plan of care
(developed collaboratively with the caregiver) that
indicates the provision of services and intended
measurable outcomes.
4. Caregiver assessment should be multidimensional
in approach and periodically updated.
5. Caregiver assessment should reflect culturally
competent practice.
6. Effective caregiver assessment requires assessors to
have specialized knowledge and skills. Practitioners’
and service providers’ education and training should
equip them with an understanding of the caregiving
process and its effects, as well as the benefits and
elements of an effective caregiver assessment.
7. Government and other third-party payers should
recognize and pay for caregiver assessment as a part
of care for older people and adults with disabilities.
Source: Family Caregiver Alliance. (2006). Caregiver assessment:
Principles, guidelines and strategies for change. Report from a
National Consensus Development Conference (vol. I, p. 12).
San Francisco, CA: Author.
3921_Ch15_477-520 05/06/14 11:18 AM Page 494
care, and (f ) multicomponent interventions (combi-
nations of more than one type of intervention).
Outcomes of interest included reducing burden, de-
pression, care recipient symptoms, and institution-
alization of the care recipient, as well as increasing
subjective well-being and caregiver knowledge and
ability. The largest effects were with CBT, which
helped to reduce depression and, to a lesser extent,
helped reduce feelings of burden. CBT concentrates
on helping caregivers identify and modify beliefs re-
lated to the situation, and develop new behaviors to
cope with caregiving demands. Psychoeducational
Family Health in Mid and Later Life 495
programs contributed to small-to-moderate effects
related to decreasing burden, depression, subjective
well-being, and care receiver symptoms. Only care
receiver education and multicomponent interven-
tions were successful in reducing institutionalization.
Other interventions that show some promise in re-
ducing stress include moderate intensity exercise
programs, and yoga and meditation activities
(Messecar, 2012).
Pinquart and Sorensen (2006) suggest that
more effort needs to be given to designing mul-
ticomponent interventions that target individual
BOX 15-5
The Try This: Best Practices in Nursing Care to Older Adults Series of Assessment Tools Is
to Provide Knowledge of Best Practices in the Care of Older Adults
1. SPICES: An Overall Assessment Tool of Older
Adults
2. Katz Index of Independence in Activities of Daily
Living
3. Mental Status Assessment of Older Adults: The
Mini-Cog
4. The Geriatric Depression Scale (GDS)
5. Predicting Pressure Ulcer Risk
6.1. The Pittsburgh Sleep Quality Index
6.2. The Epworth Sleepiness Scale
7. Assessing Pain in Older Adults
8. Fall Risk Assessment
9. Assessing Nutrition in Older Adults
10. Sexuality Assessment for Older Adults
11.1. Urinary Incontinence Assessment in Older Adults:
Part I—Transient Urinary Incontinence
11.2. Urinary Incontinence Assessment in Older Adults:
Part II—Persistent Urinary Incontinence
12. Hearing Screening in Older Adults
13. Confusion Assessment Method (CAM)
14. The Modified Caregiver Strain Index (CSI)
15. Elder Mistreatment Assessment
16.1. Beers Criteria for Potentially Inappropriate Medica-
tion Use in the Elderly. Part I. Criteria Independent
of Diagnoses or Conditions
16.2. Part II. Criteria Considering Diagnoses or Conditions
17. Alcohol Use Screening and Assessment
18. The Kayser–Jones Brief Oral Health Status
Examination (BOHSE)
19. Horowitz’s Impact of Event Scale: An Assessment
of Post-Traumatic Stress in Older Adults
20. Preventing Aspiration in Older Adults With Dysphagia
21. Immunizations for the Older Adult
22. Assessing Family Preferences for Participation in
Care in Hospitalized Older Adults
23. The Lawton Instrumental Activities of Daily
Living (IADL) Scale
24. The Hospital Admission Risk Profile (HARP)
25. Confusion Assessment Method for the Intensive
Care Unit (CAM-ICU)
26. Transitional Care Model (TCM) Hospital Discharge
Screening Criteria for High Risk Older Adults
27. General Screening Recommendations for Chronic
Disease and Risk Factors in Older Adults
28. Preparedness for Caregiving Scale
Specialty Practice Series
Series on Dementia:
D1 Avoiding Restraints in Patients with Dementia
D2 Assessing Pain in Persons with Dementia
D3 Brief Evaluation of Executive Dysfunction
D4 Therapeutic Activity Kits
D5 Recognition of Dementia in Hospitalized Older
Adults
D6 Wandering in the Hospitalized Older Adult
D7 Communication Difficulties: Assessment and
Interventions
D8 Assessing and Managing Delirium in Persons with
Dementia
D9 Decision Making in Older Adults with Dementia
D10 Working With Families of Hospitalized Older
Adults With Dementia
D11.1 Eating and Feeding Issues in Older Adults with
Dementia. Part I. Assessment
D11.2 Eating and Feeding Issues in Older Adults with
Dementia. Part II. Interventions
Source: Hartford Institute for Geriatric Nursing. Try this: And how to try this series assessment tools on the care of
older adults. Retrieved February 19, 2013, from http://hartfordign.org/practice/try_this
3921_Ch15_477-520 05/06/14 11:18 AM Page 495
caregiver needs. For example, teaching caregivers
to provide care and helping caregivers attend sup-
port groups can be powerful interventions that
contributes to feelings of mastery. Those with
high mastery have more positive experiences with
caregiving and more positive health behaviors
(Reinhard et al., 2008). They are also more likely
to provide safe care and develop critical thinking
skills.
CARE SETTINGS
We turn now to the settings in which older adults
receive long-term services and supports. This ex-
ploration of care settings begins with community-
based care, where most older adults receive care.
Particular attention is given to the unpaid long-
term care system, which occurs mostly in the older
adult’s or a family member’s home. Next is a dis-
cussion of long-term care in residential settings,
such as assisted living and nursing homes. The
focus is on the formal care system, as well as family
caregiving roles. This section of the chapter will
conclude with a discussion of acute care.
Home- and Community-Based Care
Most older adults live in community settings with
no or minimal support to manage their personal
and health needs. Recent studies show that 72% of
adults from 65 to 85 years of age report being in
good health. Further, nursing home residency for
this age group is projected to drop from 4.6% in
1985 to 3.4% by 2030 (Administration on Aging,
2011). For those over age 85 years and at the
highest risk for needing daily assistance, the trend
is similar with 22% needing nursing home care
in 1985, but only 16% are projected to need nurs-
ing home care by 2030 (Administration on Aging,
2011). Nurses may encounter these older adults
where they receive their primary health care or
to help them learn to manage chronic health
problems. A variety of home- and community-
based programs have been developed to support
the preference of older adults to remain in their
homes (see Box 15-1). Many older adults and
their families, however, have limited knowledge
about what might be needed to continue living at
home, the range of service options available in
their communities, and how to access them.
Health care providers also have limited knowl-
edge about services outside of their own agencies.
Aging and Disability Resource Centers (ADRCs)
are available in most states and are designed to be a
single access point for connecting people to the wide
range of LTC services in communities. Nurses in
all settings can make referrals to ADRCs and use
these organizations to enhance their own knowl-
edge. The goal for ADRCs is to provide people
information and assistance regardless of age, income,
or disability. “Options counseling” is a core function
of ADRCs. Options counselors are knowledgeable
about public and private resources and assist older
adults, people with disabilities, and their families to
access needed services. Services are designed to meet
individual values and preferences and options coun-
selors emphasize self-determination. Options coun-
selors assist people in planning for the future to help
preserve personal financial resources and to avoid
crisis situations.
Options counselors can work with older adults
and families to ensure that supports needed are
in place if the person is discharged to home. They
are an important partner for nurses. Although
hospital discharge planners may assist with
arranging home health services, older adults may
have continuing needs for supports once their
qualifications for home health services through
Medicare ends. Options counselors can help
identify other types of assistance. Thus, they
are an important resource to providers and older
adults in making a successful transition from
hospitals and nursing facilities to a lesser level of
care, whether it is back to the person’s home,
assisted living, or other residential setting. To
find the ADRCs in your state, use the interactive
map at ADRC Technical Assistance Exchange,
http://www.adrc-tae.org.
Not all ADRCs function statewide. Another
resource for identifying local long-term services
and supports is Eldercare Locater (http://www.
eldercare.gov/Eldercare.NET/Public/Index.aspx; 1-
800-677-1116), which will provide contact informa-
tion for a local Area Agency on Aging (AAAs). The
AAAs and the organizations that subcontract with
them (e.g., Senior Centers, Adult Day Service,
Meals Programs) administer the services listed in
Box 15-1. Other resources for older adults and their
caregivers include organizations associated with a
variety of health problems, such as the Alzheimer’s
Association, the American Heart Association, and
496 Nursing Care of Families in Clinical Areas
3921_Ch15_477-520 05/06/14 11:18 AM Page 496
the Arthritis Foundation. Such organizations con-
tain a wealth of consumer information on their Web
sites, including tools for monitoring chronic health
problems, guides for caregivers, and links to local
resources.
Nurses may also work with older adults in a
several established and emerging programs to
maintain or improve their health, reduce hospi-
talization, and support family caregivers. Exam-
ples of these programs are listed in Box 15-6 and
Box 15-7. Technology is also increasingly used in
home settings, including intravenous therapy, en-
teral nutrition, telehealth, or devices to monitor
chronic health problems. While this technology
contributes to early detection and prevention of
many health problems and treatment of chronic
health needs, learning how to use the equipment
can also be a source of stress and anxiety for care-
givers (Saunders, 2012).
One of the major reasons older adults prefer to
remain in their own homes is to maintain auton-
omy and control over their lives. Yet family mem-
bers are often more concerned about safety.
Nurses can play an important role in working with
families to identify ways to balance safety and risk
related to mobility and cognitive problems such
as dementia. Nurses can also help caregivers un-
derstand the normal aging process, including
recognition of changes that should prompt an
evaluation for potential problems. For example,
Keyser, Buchanan, and Edge (2012) designed a
program to teach caregivers about recognizing
Family Health in Mid and Later Life 497
risk factors and signs of delirium in community-
dwelling elders with a goal of early intervention.
This intervention, in turn, helps caregivers feel
more capable and competent, and keeps care re-
cipients safer by addressing treatable conditions
more quickly and successfully.
Residential Long-Term Care
Residential care includes services that are consid-
ered community-based (e.g., adult foster care,
board and care homes, assisted living) and nursing
home settings. Continuing care retirement com-
munities (CCRCs) include elements of both,
ranging from apartments for independent living
to skilled nursing. CCRCs often provide home
care or assisted living services as well. The terms
and amount of regulation for community-based
residential care and CCRCs vary by state, includ-
ing minimal educational requirements for the
staff, staff-client ratios, and service requirements.
General descriptions of residential LTC options
were presented in Box 15-2. Families continue to
be integrally involved in all of these care settings,
and nurses play a vital role in assessment and man-
aging care and supporting older adults and their
families. This section focuses on two aspects of
residential LTC: assisted living (AL) and nursing
homes. Throughout this discussion, we examine
the changing role of LTC nurses and the partner-
ship of nurses with LTC consumers, their family
members, and other LTC providers.
BOX 15-6
Chronic Care Programs for Older Adults
National PACE Association: http://www.
npaonline.org/website/article.asp?id=4
The Program of All-inclusive Care for the Elderly (PACE)
model is centered around the belief that it is better for the
well-being of seniors with chronic care needs and their
families to be served in the community whenever possible.
Guided Care: http://www.guidedcare.org
“Guided Care® is a new solution to the growing chal-
lenge of caring for older adults with chronic conditions
and complex health needs. A Guided Care nurse, based
in a primary care office, works with 2–5 physicians and
other members of the care team to provide coordinated,
patient-centered, cost-effective health care to 50–60 of
their chronically ill patients. The Guided Care nurse con-
ducts in-home assessments, facilitates care planning,
promotes patient self-management, monitors conditions
monthly, coordinates the efforts of all health care profes-
sionals, smooths transitions between sites of care, edu-
cates and supports family caregivers, and facilitates access
to community resources.”
Patient-Centered Primary Care Collaborative:
http://www.pcpcc.net
Describes the patient-centered medical home model
of chronic illness management.
3921_Ch15_477-520 05/06/14 11:18 AM Page 497
Assisted Living (AL)
AL was developed in part as a response to the in-
stitutional environment of nursing homes. Nursing
homes were considered to function under a medical
model that was unresponsive to the quality-of-life
needs of residents. In contrast, the assisted living
approach was described as a social model of care
that would serve as an extension of “home.” Keren
Brown Wilson (2007) was a pioneer in this effort
in the early 1980s. She was interested in creating
housing that would match the needs of frail elders
for support while maintaining their autonomy, pri-
vacy, and a sense of home. The idea was to provide
498 Nursing Care of Families in Clinical Areas
help to people who required some assistance be-
cause of physical or cognitive impairment and
could not live safely at home but did not require
levels of nursing care found in traditional nursing
homes. The key features of this assisted living
model included a private living space with locking
doors, a kitchenette, and the right of residents to
make a wide range of choices about their lives, in-
cluding visits from friends and family, and their
health care.
The state of Oregon, as an example of a state
using new model of care, supports the vision
of AL proposed by Wilson. Oregon obtained a
Medicaid Waiver to support low-income clients in
BOX 15-7
Programs and Models to Improve Quality of Care for Older Adults in Hospitals
Nurses Improving Care to Health System Elders
(NICHE): Initiated in 1992, this is a nationwide pro-
gram of staff education and system evaluation to de-
liver “sensitive and exemplary nursing care” to older
adults (Mezey et al., 2004, p. 452). As of 2008, more
than 200 hospitals were participating in this effort.
Geriatric Resource Nurse (GRN) Model: In this unit-
based model, staff nurses with an interest in working
with older adults are provided with additional knowl-
edge and skills for working with this specialized pop-
ulation. They serve as resources for other nurses on
their units by implementing best practices and pro-
viding consultation to their peers. The GRN is usually
a key component in hospitals that have implemented
the NICHE program (Mezey et al., 2004).
Geriatric Syndrome Management Model: This model
uses advanced practice nurses, usually gerontological
clinical nurse specialists (GCNSs), as consultants to
assess and manage problems common to hospital-
ized older adults, such as delirium, falls, and inconti-
nence. These nurses also provide staff education and
evaluate policies, procedures, and other system is-
sues to identify barriers to design strategies to provide
optimal care for older adults (Mezey et al., 2004).
Acute Care for the Elderly (ACE) Model: These are
hospital units designed specifically to meet the needs
of older adults. An interdisciplinary team approach is
used, often with a GCNS as the team coordinator.
The goal is to prevent loss of function while being
hospitalized for an acute health problem.
Hospital Elder Life Program (HELP): This model also
uses an interdisciplinary approach with a focus on
ongoing assessment to identify and treat problems
promptly. Volunteers are also incorporated in this
model (Inouye, Bogardus, Baker, Leo-Summers, &
Cooney, 2000).
Family-Centered Geriatric Resource Nurse (FCGRN)
Model: This combines the GRN role with concepts
from the Family-Centered Care (FCC) Model. The FCC
Model, previously used for working with chronically ill
children, was adapted for care of hospitalized older
adults. The focus is on assessment of the family, as
well as the individual older adult (Salinas, O’Connor,
Weinstein, Lee, & Fitzpatrick, 2002). This model is
used in one of the case studies in this chapter.
Older Adults Services Inpatient Strategies (OASIS):
This program was developed at a hospital in Atlanta
and combined features from other programs based
on the local needs and resources. It used an interdis-
ciplinary approach with a GCNS as the team coordi-
nator (Tucker et al., 2006). Note: This should not be
confused with the OASIS (Outcome Assessment and
Information Set), a comprehensive assessment and
database used in home health care.
Hospital at Home: Initially a research project, this
model focused on community-dwelling older adults
requiring hospital admission for exacerbation of
chronic obstructive pulmonary disease (COPD),
chronic heart failure (CHF), community-acquired
pneumonia, or cellulitis. If specific criteria were met,
older adults were offered the option of receiving care
at home with direct nursing care as well as other serv-
ices as indicated. Outcomes of care were equal to or
better than those of patients cared for in the hospital,
especially regarding functional ability (Frick et al.,
2009; Leff et al., 2009). The Veterans Administration
has continued this model in several locations under
the name Program at Home (Mader et al., 2008).
3921_Ch15_477-520 05/06/14 11:18 AM Page 498
using assisted living and other community-based
care settings. Oregon administrative rules identify
five values that are necessary for assisted living:
independence, choices, dignity, homelike environ-
ments, and privacy (Carder, 2002). In contrast,
most other states use LTC Medicaid funds pre-
dominantly for nursing home care. The Medicaid
Waiver allowed Oregon to use Medicaid funds
to support individuals in assisted living, adult fos-
ter care (homes with five or fewer residents), and
a variety of other home care services. Evaluations
of these services indicated that these new forms
of community-based care were generally viewed
positively by consumers, and they were substitut-
ing for nursing home care (Wilson, 2007). Costs
are also significantly lower compared to nursing
home care.
A number of assisted living models developed
independently and simultaneously around the
United States (Stone & Reinhard, 2007; Wilson,
2007; Zimmerman & Sloan, 2007). By the 1990s,
the number of assisted living housing units and
those served by them had exploded to become the
fastest growing type of LTC service. By 2005, the
number of residential or assisted living beds was
similar to the number of nursing home beds
(Sloane, Zimmerman, & Sheps, 2005). With this
growth came increasing divergence in the defini-
tions of assisted living and the services associated
with it. Some assisted living facilities no longer em-
phasized private units, and the types of supportive
services varied widely—some offering simple med-
ication reminders to others offering a full range of
ADL and dementia care services. Each state has
developed its own definitions and regulations that
influence how assisted living is implemented.
Financing varies greatly; only some states use Med-
icaid dollars to fund assisted living. In other states,
only those with significant personal financial
resources have assisted living as a housing option.
Because assisted living is regulated by states, the
services may vary but typically include presence of
staff 24 hours/day, meals, modified special diets, as-
sistance with personal care, housekeeping and laun-
dry, transportation, and medication management
and health monitoring (Mitty et al., 2010; Oregon
Department of Human Services, 2011) Depending
on the organization, additional services may be
available for additional fees. Although staff is avail-
able 24 hours per day, a licensed nurse typically
is not on duty at all times. In many AL settings,
unlicensed staff may carry out most care activities,
including those that might be considered nursing
care, such as medication administration. Similarly,
training requirements for resident assistants are less
standardized and/or demanding as compared to
nursing assistants in nursing homes.
Many people who move into assisted living
apartments may expect to remain there for the rest
of their lives. Because of the gap between needs and
services that exist in many facilities, however, indi-
viduals may be asked to move to a nursing home or
perhaps a foster care placement. Some facilities
may have strict admission criteria that residents
must meet to remain in the assisted living commu-
nity and discharge criteria that will require reloca-
tion. For example, in a review of research on AL,
Stone and Reinhard (2007) found that a sizable
number (75% in one study) of AL would not keep
residents who required nursing home level care for
more than 2 weeks. In contrast, they described an-
other study that suggested that as residents become
increasingly frail and dependent, AL can and does
become a substitute for nursing home care, provid-
ing additional services as the need arises. These dif-
ferent findings demonstrate the difficulties of
providing care in the least restrictive environment
whenever possible, while at the same time ensuring
residents receive the needed care to avoid jeopard-
izing their health and avoiding unnecessary transi-
tions. This goal is often referred to as “aging in
place.” When working with older adults and their
families, it is critical that they understand the char-
acteristics of assisted living related to staffing and
services available so they can make informed deci-
sions. In some cases, AL residents may be eligible
to receive additional support from Medicare home
health care or hospice care if they meet the require-
ments for those programs.
Roles and Responsibilities of AL Nursing
The role of nurses in long-term care residential
settings is evolving and expanding. It is as variable
as are the models of assisted living, in part because
residents are generally less disabled and the avail-
ability of nursing services is lower than in nursing
homes. Some AL communities include full-time
or part-time registered nurses (RNs) as part of their
staff, some do not employ nurses, and still others
contract with nurses to provide assessment of
residents’ health and self-care needs and other
services. As a general matter, important roles and
Family Health in Mid and Later Life 499
3921_Ch15_477-520 05/06/14 11:18 AM Page 499
responsibilities of nurses in AL include assessment
of resident needs, communication with residents
and families to help them understand what services
and care are available, and whether there are spe-
cific admission and/or discharge criteria. AL nurses
may also provide staff education. If nurses function
in a consultation role, they are not direct supervisors
of staff and need to consider different strategies
to encourage staff to adopt their recommendations
for care. Additional nursing activities, often initiated
at the requests of families who do not live with
the older adult, include assisting direct care workers
with documentation; teaching paid care workers
what to expect in caring for residents; and advo-
cacy, monitoring, and support through long-term
trusting relationships.
Nursing Homes
Although a very small proportion of older adults
live in nursing homes, about one-third of those
over age 65 may spend some time in one (AARP,
2004). Attempts to control health care costs
through shortened hospital stays beginning in the
1980s resulted in nursing homes increasingly being
the location for rehabilitation and recovery from
surgery and acute illness. The number of older
adults who permanently reside in nursing homes
has declined as more residential care alternatives
have become available (Stone, 2006). Costs of care
are high and are the responsibility of residents un-
less they meet the strict requirements for Medicare
or qualify for Medicaid. Moving to a nursing home
represents considerable losses for an older adult,
including loss of health, privacy, independence,
choice, quality of life, and autonomy. Due to space
limitations, they may not be able to bring many
personal possessions with them.
Most older adults and their families consider
nursing homes to be undesirable and the option of
last resort, largely because nursing homes have a
poor image and a reputation for providing poor
quality of care. The Nursing Home Reform Act,
passed in 1987 as part of the Omnibus Reconcilia-
tion Act (OBRA 1987), attempted to address short-
comings by changing practice and systems of care.
Practice changes included reducing restraint use
(both physical and chemical or medications used to
manage behavior symptoms), addressing psychoso-
cial and physical care, and developing a national
data system known as the Minimum Data Set
(MDS) (Sloane et al., 2005). Although there have
always been nursing homes where excellent, nur-
turing care is provided, and although extensive fed-
eral and state regulations have attempted to address
shortcomings, the prevailing public view and expe-
rience of nursing homes for many older adults,
their families, and nurses has remained negative.
The Pioneer Network (1997), a group of LTC
innovators, initiated the culture change move-
ment, which focuses on person-directed care. It is
a way of thinking about care that honors and val-
ues the person receiving care, with an emphasis
on both quality of care and quality of life so that
the individual is not lost in the process of provid-
ing care. Other terms used include person-centered
care, resident-centered care, individualized care, and
person-centered thinking (White, Newton-Curtis,
& Lyons, 2008). Research suggests that nursing
home culture is changing, although improvements
are still needed (Miller et al., 2010; Rahman &
Schnelle, 2008).
Roles and Responsibilities of Nursing
Home Nurses
Nurses historically have played major roles in nurs-
ing home (NH) care, but like their counter parts in
AL, the role of nurses is evolving and expanding in
these settings. Care is increasingly complex and res-
idents in skilled and rehabilitation units resemble
hospitalized patients of the not too distant past. As
in AL, NH nurses must be able to work independ-
ently, assume leadership roles, and possess strong
assessment and prioritizing skills. They must be
able to work effectively and collaboratively on in-
terdisciplinary teams consisting of direct care work-
ers, administrators, other NH staff who support
residents (e.g., social services, rehabilitation, di-
etary), and other providers who may not be on staff
but are critical to the well-being of residents, such
as hospice teams, physicians, options counselors,
and other home- and community-based care
providers. Understanding of best practices in care
of older adults is constantly evolving. Practices such
as those related to pressure ulcer prevention and
treatment, pain assessment and management, de-
mentia care, use of restraints (physical, pharmaceu-
tical, or electronic), and mental health care continue
to evolve. A key role of NH nursing is to maintain
knowledge of and implement best practices. Some
useful sources are listed in Box 15-8. The most
skilled nurses are needed for these settings.
500 Nursing Care of Families in Clinical Areas
3921_Ch15_477-520 05/06/14 11:18 AM Page 500
Many nurses are participating in efforts to pro-
mote culture change in all residential care settings.
Person-directed care is consistent with nursing val-
ues, in that nursing strives to individualize care
and put the individual ahead of the task (Koren,
2010, Robinson & Rosher, 2006; Talerico, O’Brien,
& Swafford, 2003). This is also true for family care,
where the nurse puts family-centered care before
tasks or hospital regulations that exclude family
members. Common elements include personhood,
knowing the person and their family, autonomy/
choice, including family members in decision mak-
ing, comfort, and valuing relationships (White et al.,
Family Health in Mid and Later Life 501
2008). New regulations from the Centers for
Medicare and Medicaid Services have made changes
in regulations and support culturally and family-di-
rected care practices. The Pioneer Network and
leaders in gerontological and long-term care nurs-
ing developed “Nurse Competencies for Nursing
Home Culture Change” (Box 15-9).
Family Involvement in Residential Care
Settings
Contrary to prevailing myths, families typically
do not abandon their older members once they
move into facility-based care, nor do they cease
providing care, although the nature of that care
will be different (Keefe & Fancey, 2000). Decades
BOX 15-8
Resources for Best Practices
Medicare: http://www.medicare.gov/index.html
Provides resources for consumers for finding nursing
home and home health care agencies, including
important questions to ask, information about quality
of care, and staffing.
Creating Enriched Learning Environments
Through Partnerships in Long-Term Care:
http://www.ecleps.org/PRWR.html
Includes peer-reviewed Web sites and learning activities
for nurses.
Transitional Care Model: http://www.
transitionalcare.info
Interdisciplinary model developed by the University of
Pennsylvania School of Nursing for comprehensive dis-
charge planning for high-risk hospitalized older adults.
Pioneer Network: http://www.pioneernetwork.
net/Providers/ForNurses
Resources about culture change and other innovative
practices in nursing homes.
Geriatric Education Centers: http://bhpr.hrsa.
gov/grants/geriatricsalliedhealth/gec.html
These are located in most states and focus on education
and training of health professionals. Most centers have
Web sites and post educational materials. For a listing
of GECs, go to “active grants” at the bottom of the GEC
program Web site.
Next Step in Care: http://www.nextstepincare.
org/About_the_Campaign
Sponsored by the United Hospital Fund to support
partnerships between family caregivers and health care
providers, especially during times of transitions between
care settings.
BOX 15-9
Nurse Competencies for Nursing Home
Culture Change
1. Models, teaches, and utilizes effective communica-
tion skills such as active listening, giving meaningful
feedback, communicating ideas clearly, addressing
emotional behaviors, resolving conflict, and under-
standing the role of diversity in communication
2. Creates systems and adapts daily routines and
“person-directed” care practices to accommodate
resident preferences
3. Views self as part of team, not always as the leader
4. Evaluates the degree to which person-directed care
practices exist in the care team and identifies and
addresses barriers to person-directed care
5. Views the care setting as the residents’ home and
works to create attributes of home
6. Creates a system to maintain consistency of
caregivers for residents
7. Exhibits leadership characteristics/abilities to
promote person-directed care
8. Role models person-directed care
9. Problem solves complex medical/psychosocial
situations related to resident choice and risk
10. Facilitates team members, including residents
and families, in shared problem solving, decision
making, and planning
These competencies are useful in identifying specific
skills needed by nurses working in care settings involved
in culture change. It is a first step in creating measure-
ment and other tools useful in educating and supporting
nurses in this work.
Developed through a collaboration of Pioneer Network & Hartford
Institute for Geriatric Nursing. (2010). Retrieved from http://
www.pioneernetwork.net/Providers/ForNurses
3921_Ch15_477-520 05/06/14 11:18 AM Page 501
of research in nursing homes have revealed that
family members continue to visit and provide emo-
tional support, as well as some types of informal
care, after transition into a nursing facility. Families
typically desire to work in partnership with facility
staff to support (Bauer & Nay, 2011; Pillemer et al.,
2003). Nurses and other staff members can inad-
vertently set up barriers that decrease the ability of
family members to participate in the life of the res-
ident, such as by limiting visiting hours, limiting
family knowledge or involvement in care, or dis-
counting or discouraging family input into care
decisions. Developing a successful relationship ac-
tually begins before a resident is admitted, when a
family member makes an initial visit to the facility.
In addition to evaluating the physical environment,
families begin to consider the quality of care pro-
vided, and whether they can trust the staff to be-
come partners in caring for their family member
(Legault & Ducharme, 2009). Nurses and other
staff, therefore, can assist to strengthen the staff-
family partnership through communication, mak-
ing family members feel comfortable and welcomed,
and providing assurance that the staff is competent
and providing good care.
give care to the individual (Duncan & Morgan,
1994). Partnerships between families and staff
help staff members to know residents in meaningful
ways. Families are key informants with respect
to individuals’ history, likes and dislikes, personality,
routines, and what is and has been important
to them (Austin et al., 2009; Boise & White, 2004;
Iwasiw, Goldenberg, Bol, & MacMaster, 2003;
Legault & Ducharme, 2009; Logue, 2003; Reuss,
Dupuis, & Whitfield, 2005). This knowledge is crit-
ical, particularly when residents have dementia and
cannot clearly communicate this information them-
selves. Family members can provide insight into
resident actions, which in turn can help the staff re-
spond more quickly to resident needs as conveyed
through their behavior.
Families provide considerable psychological sup-
port to residents through their visits. Families are
key members of the resident’s social network, con-
tributing to identity, dignity, and quality of life
(Boise & White, 2004; Iwasiw et al., 2003). Another
important role of family members is in monitoring
the quality of care and advocating for the resident
if needed (Friedemann, Montgomery, Maiberger,
& Smith, 1997). In addition, family members con-
tinue to provide hands-on care, including helping a
family member eat, attending activities, and han-
dling personal care. Families help residents to main-
tain connections with the larger community by
taking them to public events such as concerts, parks,
shopping, and to family gatherings.
Palliative Care and End-of-Life Care in
Residential Care Settings
Currently, about 20% of all deaths occur in nursing
homes; this proportion is expected to increase due
to the aging population (Davidson, 2011; Kelly,
Thrane, Virani, Malloy, & Ferrell, 2011). Still, staff
and families of residents generally do not identify
nursing homes as a location for providing palliative
and end-of-life or hospice care. In contrast, nursing
home residents, as well as those in assisted living,
view death as a normal occurrence, something to be
expected living in a community with a large number
of older adults (Munn et al., 2008). As older adults
begin to age in place in AL and other community-
based care settings, these settings are increasingly
the places where death occurs. End-of-life care in
these settings has its own challenges in part due to
limited staffing, limited staff knowledge, and the em-
phasis on resident independence and autonomy
(Cartwright, Miller, & Volpin, 2009).
502 Nursing Care of Families in Clinical Areas
Person-centered, or person-directed, care is con-
sistent with the needs and values of nursing home
residents and their families. Family members want
staff to gain knowledge about the resident, often
striving to be role models in demonstrating how to
3921_Ch15_477-520 05/06/14 11:18 AM Page 502
As noted in Chapter 10, palliative care and end-
of-life or hospice care are often considered synony-
mous. To clarify for the discussion here, the focus
of palliative care is to improve the quality of life for
persons with chronic, life-limiting illnesses through
careful identification and management of symp-
toms. These symptoms may include pain, shortness
of breath, fatigue, constipation, nausea, loss of
appetite, problems with sleep, and side effects of
medical treatments (National Institute of Nursing
Research, 2011). Palliative care may continue for
years; ideally, it begins when the chronic condition
is first identified. The focus of end-of-life care, on
the other hand, is the immediate time around death.
Most long-stay nursing home residents have
multiple chronic illnesses and are ideal candidates
for palliative care. Because of the confusion about
these terms, however, health team members may
not initiate discussion about palliative care until
the person is close to the end of life. Several other
barriers to providing effective palliative and end-
of-life care in nursing homes exist, including lack
of education of staff, high turnover, and low reim-
bursement. Another barrier is the dual mission of
nursing homes as organizations that provide reha-
bilitation and short-term care for persons recover-
ing from acute illness with the goal of returning
home, as well as care for people at the end of their
lives (Davidson, 2011; Kelly et al., 2011). Another
challenge is the high proportion of nursing home
residents who have dementia, which is often not
recognized as a terminal condition by families or
staff, including physicians. Dementia also has a less
predictable trajectory or pattern of transition to
end of live compared to other chronic conditions,
making it more difficult to identify when changes
are likely to happen and when additional resources
such as hospice may be appropriate.
An important part of palliative care is working
with older adults and their families to prepare
advance directives, such as a durable power of attor-
ney for health care or a living will. The process of
preparing these documents provides an opportunity
to discuss and understand values and preferences to
guide decisions when the individual is not able to di-
rectly communicate. Advance directives are not just
about what treatments are not wanted; they can also
be used to request treatment (Mitty, 2012).
Although often associated with a location or
service, hospice is, most important, a philosophy of
care provided at the end of life. Most hospice care
is provided at home, although assisted living and
nursing home residents may also qualify for hospice
as a Medicare benefit. Cartwright et al. (2009)
found that quality end-of-life care was greatly in-
fluenced by the AL staff commitment to the resi-
dent dying in the AL and the respectful collaboration
of multiple care providers, including AL nurses, di-
rect care workers, family members, and the hospice
team. Hospice also provides continued support to
family members after the death. The culture change
initiative in nursing homes has the potential to
facilitate provision of palliative and end-of-life care
in this setting. The cultures of both initiatives focus
on person-centered care, understanding behavior as
a way of communicating needs, comfort, and hon-
oring values and preferences of older adults and
their families (Long, 2009).
Family Health in Mid and Later Life 503
Acute Care
Although most nurses who work in acute care do
not consider themselves gerontological nurses, a
high proportion of acute care patients are over age
65. This includes both general acute care and criti-
cal care units where up to 50% of patients may be
older adults (Balas, Casey, & Happ, 2012; Steele,
2010). Older adults are also commonly seen in
emergency departments, where they account for up
to 25% of trauma admissions (Cutugno, 2011).
Older adults are often admitted to the hospital for
3921_Ch15_477-520 05/06/14 11:18 AM Page 503
conditions associated with chronic conditions, such
as an exacerbation of heart failure or surgery to re-
place joints damaged from osteoarthritis. In this
section, we discuss two risks for older adults associ-
ated with hospitalization: loss of functional ability
and development of delirium. We focus on the
nurses’ crucial role in assessment of risk factors and
early intervention to eliminate or reduce these risks.
Comprehensive assessment is essential to iden-
tify potential problems and design interventions to
prevent complications and maintain function. Four
areas are critical to assess in all older adults: (1)
ADLs, (2) IADLs, (3) cognitive status, and (4) pres-
ence of sensory impairments. Although nurses are
always assessing through observations and interac-
tions with clients, the use of standardized tools
facilitates consistent data collection over time to be
able to evaluate baseline status, detect changes, and
evaluate response to interventions. Several tools are
available to assess an older adult admitted to acute
care (see Box 15-5).
As described previously, ADL assessment in-
cludes bathing, dressing, eating, toileting, hygiene,
and mobility. This information is important for
planning care during hospitalization and for dis-
charge. IADL function often determines a person’s
ability to continue to live independently; these
functions include shopping, managing finances,
meal preparation, driving, and managing medica-
tions. Persons with visual or hearing impairments
will have difficulty participating in assessment of
ADLs and IADLs. Failure to recognize hearing and
visual impairments risks making erroneous diag-
noses. Providing the person’s glasses and hearing
aides are easy but important interventions.
Hospitalization puts older adults at great risk for
functional decline. Kleinpell et al. (2008) report that,
after two days of bed rest, 71% of older patients
experienced declines in mobility, transferring, toi-
leting, feeding, and grooming. This deconditioning
is also responsible for accelerated bone loss, reduced
cardiovascular efficiency, and decreased muscle
strength. As a result, older adults are at increased risk
for falls, delirium, nosocomial infections, adverse
drug reactions, and pressure ulcers. Furthermore,
after discharge, they continue to experience func-
tional decline and prolonged recovery.
Because persons with pre-existing cognitive
impairment are especially at risk during hospitaliza-
tion, careful assessment helps to distinguish between
the presence of any of the “three D’s”: dementia,
delirium, and depression. Although some symptoms
are similar, these disorders are distinct and require
very different kinds of interventions. Dementia is a
group of several progressive cognitive disorders that
results in memory loss, confusion, loss of judgment,
and loss of various executive functions such as ability
to plan or organize activities. Onset is slow and
insidious. Alzheimer’s disease is the most common
form of dementia and risk increases with age; esti-
mates are that 50% or more of those older than
85 years have the disease (Doerflinger, 2007).
Delirium also involves confusion, though onset
occurs rapidly. Symptoms include inattention, dis-
organized thinking, and altered level of conscious-
ness (Waszynski, 2007). Because of their more
fragile physiological balance, older adults are more
susceptible to delirium, which is usually due to
physiological causes such as infection, adverse ef-
fects of medications, dehydration, and fluid and
electrolyte imbalance. With estimates of 14% to
56% of older patients experiencing delirium in hos-
pitals, it is extremely important to be alert to symp-
toms. Postoperative patients appear to be especially
vulnerable. Family members can provide essential
information about baseline cognitive status. Delir-
ium can be prevented by identifying and eliminating
or minimizing risk factors, and reversed if detected
and the underlying causes treated early. Morbidity
and mortality rates are high for older adults who de-
velop delirium. Costs of hospitalization are also
higher for persons who develop delirium.
Depression is a mood disorder with affective,
cognitive, and physical symptoms (Harvath &
McKenzie, 2012). Although common in older
adults (up to 30% to 40% in some settings), de-
pression is not a normal result of aging. It is often
not recognized and consequently is undertreated,
diminishing quality of life. Depression presents a
complex picture in this population: it is associated
with many chronic conditions, which contributes
to its high prevalence for older adults; it may inter-
fere with chronic illness self-management; and
some medications to treat chronic conditions may
cause symptoms of depression (Byrd & Vito, 2011;
Harvath & McKenzie, 2012). Left untreated, how-
ever, depression may persist or progress. It is also
a major risk factor for suicide; adults over age 65
have the highest rates of suicide (15 to 20 per
100,000) with the rate for white males over age 85
even higher (80 to 113 per 100,000) (Harvath &
McKenzie, 2012).
504 Nursing Care of Families in Clinical Areas
3921_Ch15_477-520 05/06/14 11:18 AM Page 504
Screening for depression should be part of rou-
tine health and nursing assessment. Several brief
and easy-to-use tools are available, such as the
Geriatric Depression Scale: Short Form (GDS-SF;
Greenberg, 2007). The first two items of the
Patient Health Questionnaire (PHQ)-9 can also be
used as an initial screen; if either is answered posi-
tively, the remaining seven items are administered.
Once identified, depression can be treated by a
variety of methods, including medications, exercise,
and psychosocial approaches such as cognitive be-
havioral therapy, and reminiscence or life review
(Harvath & McKenzie, 2012). Most of the newer
antidepressant medications are effective for older
adults and also have an improved side-effect profile
compared to older drugs. Older adults who do not
tolerate medications may benefit from electrocon-
vulsive therapy (ECT). Nursing interventions in-
clude assessing and providing safety for persons
at risk for suicide, supporting health and physical
function, enhancing autonomy and control, and
providing encouragement and advocacy to obtain
optimal treatment (Byrd & Vito; Harvath &
McKenzie, 2012). As noted previously, family care-
givers are also at risk for depression and should be
included in assessment and treatment.
The hospital experience is further complicated
for patients, families, and nurses due to the fact that
the “three D’s” often occur in combination. For ex-
ample, delirium superimposed on dementia is re-
ceiving increasing attention in nursing literature
(Steis & Fick, 2012; Steis et al., 2012; Voyer,
Richard, Doucet, & Carmichael, 2011). This chal-
lenge presents opportunities for nurses and family
members to collaborate. For example, hospital
nurses are at a disadvantage because they are not
familiar with the usual behavior of a person with
dementia and are not able to recognize a subtle
change due to delirium. Family members may be
able to provide valuable information about the per-
son’s usual behavior to prompt the nurse to assess
for potential delirium. Nursing home staff may also
be an important resource for a resident who does not
have family available; staff may be an important re-
source about the person’s usual mental status. Fam-
ily members may be alarmed by behavior changes
seen in a hospitalized older adult without prior cog-
nitive impairment who develops delirium and might
assume the patient has developed dementia. Nurses
can offer reassurance that these changes may be due
to a physiological cause and when corrected, the per-
son’s usual cognitive abilities will return.
Family Health in Mid and Later Life 505
Family Case Study: Hooper
Family
Using the life course perspective illustrated by Maria
Hooper and her family (see Figure 15-1, which depicts the
Hooper family genogram), we explore transitions that fami-
lies experience as a result of declining health and increas-
ing dependency common in old age. From a wider
perspective, we take in the intersection of older families
with the health care system.
Maria, age 60, is the oldest of four siblings. She has two
brothers, James and Paul, and a sister, Ruth. Maria always
counts Jane as her sister, too. Jane is a year younger than
Maria and is the daughter of one of her mother’s closest
friends. When Jane needed a home as a young teenager,
Maria’s parents, Sarah and Louis, took her in, and Jane
lived with them for 5 years. She and Maria became espe-
cially close, and now Jane and her family participate in all
of Maria’s and her extended family’s gatherings.
Sarah, age 82, and Louis, age 84, have lived in their
community since their marriage 60 years earlier. They
enjoy good health, except for Sarah’s arthritis and mild
hearing loss, and Louis’s diabetes and hypertension, which
are well controlled. They experience no limitations in ADLs,
although both complain that it takes them longer to get
things done. Still, they both volunteer for several different
organizations and spend time with their friends. Maria lives
40 miles away from her parents, closer than the rest of her
siblings. Maria and her parents talk on the phone about
twice a week and they get together for dinner every couple
of weeks.
Maria was divorced when her children, Jason and Kyra,
were in elementary school. She still maintains connections
with her ex-mother-in-law, Carol, who is now 87 years old.
Carol has been widowed for 40 years. When Maria and her
husband were divorced, Carol was determined that she
would not lose contact with her grandchildren, as she had
seen that happen with some of her friends. Maria had al-
ways been on good terms with Carol and felt it important
that her children know their paternal grandmother, so both
Maria and Carol made the effort to maintain contact. Carol
lived about an hour away, but Maria and her children
would spend at least one Saturday a month with her until
(continued)
3921_Ch15_477-520 05/06/14 11:18 AM Page 505
506 Nursing Care of Families in Clinical Areas
the children entered into high school and were involved
with multiple activities. Their visits became more sporadic,
but Carol would come and watch her grandchildren’s
games and music concerts whenever she could.
When Carol was diagnosed with Parkinson’s disease
about 10 years ago, Maria became part of a community
support system. Her role was to visit monthly, purchase
groceries, and do some housekeeping. In addition to
Parkinson’s disease, Carol began to have problems with
her memory and could no longer live alone. With some re-
luctance, she moved into an assisted living (AL) residence
in her community. Maria has continued to visit her nearly
every month. Carol usually knows Maria, but sometimes
forgets she is divorced from her son. They mostly remi-
nisce about the grandchildren.
Maria’s life is quite busy. She is the office manager of a
small business, and in addition to her parents and mother-
in-law, Maria is involved in her children’s lives. Jason and his
partner live several hundred miles away, but Maria talks with
him every couple of weeks. Maria often spends her vaca-
tions with them. Kyra is married and has two children of her
own. Because Kyra lives close, Maria frequently babysits and
delights in having each child spend the night about once a
month. Maria enjoys being a grandparent, yet feels badly for
her sister, Ruth, who has had sole responsibility for raising
her own grandchildren for the past two years.
Discussion:
Maria’s family is reflective of many older families. At
60 years, Maria is part of the baby boom, and like
many in her generation, she has several siblings who
represent potential support systems for both Maria and
her parents. This includes Jane, who is fictive kin and
has a close and family-like relationship with Maria and
her parents. Typical for most families, Maria lives rela-
tively close to her parents and is in regular contact with
them. Generally, they have a good relationship, character-
ized by affection, a history of mutual exchanges of help,
and many shared values. Maria and her children are
especially close to her parents because they provided
considerable support as Maria was going through her
divorce. Support included temporary housing, child care,
and some financial assistance. Now, Sarah and Louis
(Maria’s parents) are close to becoming the “old-old”
Richard
62 yr
Louis
85 yr
Lives in
another
state
Tom Jason Kyra
M 1975
D 1982
Works
full-time
Maria
60 yr
Carol
87 yr
Lives 1,000 miles away
Visits infrequently
Calls weekly
Parkinson’s disease
Confusion and lethargy
Hospitalized for UTI and dehydration
Being D/C in 4 days
Sarah
83 yr
Hip fracture, now
living in skilled
nursing home
FIGURE 15-1 Hooper family genogram.
3921_Ch15_477-520 05/06/14 11:18 AM Page 506
Family Health in Mid and Later Life 507
generation, that is, those older than 85 years. Although
they are independent, engaged in their community, and
consider themselves in good health, both have several
chronic illnesses that could cause them problems in the
future. Maria’s former mother-in-law, Carol, has not been
as fortunate. She was widowed “off-time” in her forties
and has lived alone since her son grew up and left
home. Her activities have been limited for many years
because of Parkinson’s disease and, more recently,
cognitive impairment. She has resided for several years
in an AL that accepts Medicaid clients.
Transition 1—Louis Home to Hospital:
Sarah (now age 83) spent most of the day at a friend’s
house. When she returned home about 4 p.m., she found
her husband, Louis (age 85), on the floor in the garage. He
told her that he tripped on the stairs while carrying a chair
that needed repair; this occurred about 9:30 a.m. He tried
to get up or crawl up the three steps from the attached
garage to the kitchen, but he could not move because the
pain was too great. Sarah called 911, and Louis was taken
to the emergency department. Fortunately, it was a relatively
uncomplicated fracture of his hip. He was able to have a
surgical repair the next morning. Because he experienced
some confusion after surgery, the nurses were reluctant to
give him pain medication, believing the medication would
cause more confusion. He started physical therapy the day
after surgery but could participate only to a limited extent
because of the pain. He was also started on insulin to con-
trol his diabetes (he previously took an oral medication).
Louis’s needs are common. As an older adult, Louis
was at a greater risk for falls and related injuries even
though he did not have other risk factors. Hospital care by
those unfamiliar with the needs of older adults can exacer-
bate rather than prevent negative outcomes. Knowing, for
example, that untreated pain can increase confusion and
delay successful rehabilitation is important for nurses.
Transition 2—Louis Hospital to Skilled Nursing
Facility:
After 4 days in the hospital, Louis was discharged to the
skilled care unit of a nursing home for additional rehabilita-
tion, with the goal of returning to his own home. The timing
of the discharge came as a surprise to Sarah and Maria,
giving them little time to visit and select a skilled nursing
facility (SNF) or for other siblings to arrive from out of town
to provide support. Fortunately, Sarah and Louis had
friends who had had a good experience in one that was
located about 30 minutes away. It had space available;
Maria stopped by to look at it and thought it would work.
At the SNF, Louis’ pain was finally controlled and he was
eager to begin physical and occupational therapy so that
he could go home. Although attention was focused on
Louis, Sarah also needed support to bring Louis home as
quickly and successfully as possible. See Figure 15-2, the
Hooper family ecomap. One spouse’s response to stress
will affect the way that the other spouse experiences stress.
During this transitional period, it is important to be cog-
nizant of stress levels and needs of both Sarah and Louis.
For example, nurses and others can help them consider
changing their home environment to prevent future falls
and they will need instruction in managing Louis’s pain
while his hip heals. Louis’s diabetes needs to be monitored
and assessed to determine whether he will continue to
need insulin injections or be able to return to managing
through oral medications.
Without including Sarah in the transition planning, Louis
is likely to spend a longer time in the SNF or return home
without sufficient support. Without support, Sarah is likely
to experience greater levels of stress and caregiver burden
in her expanded role as caregiver. Because of her hearing
loss, Sarah does not always understand what the physician,
nurses, and other staff tell her. Maria noticed that providers
tend to treat her mother as if she has dementia and often
do not include her in conversations. As a result, Maria feels
the need to be present as much as possible. She has
missed a lot of work, is worried about losing her job, and
cannot afford to take more time off. Fortunately, nurses at
the SNF are aware of these constraints and are able to
arrange a care conference with Louis, Sarah, and Maria
after regular business hours to begin planning for Louis’s
discharge to home. Maria and her parents are aware that
Medicare is funding rehabilitation services, but are surprised
to learn that these benefits will run out, sooner if Louis
does not keep progressing toward independence.
Transition 3—Louis SNF to Home:
Once again, discharge came quickly with little time to
locate a home health care agency. The SNF discharge
coordinator provided a list of agencies and Maria selected
one. The therapists at the SNF gave Sarah and Maria a
list of adaptive devices (e.g., raised toilet seat, grabber,
elastic shoestrings, a device to help Louis put on his socks,
walker) to purchase before Louis’s discharge. Because
Louis still qualified for Medicare services, he was able to
see a physical therapist, an occupational therapist, and a
nurse once a week at home. These three providers collab-
orated to complete a home safety assessment to identify
potential risk and strategies to eliminate or reduce the risks.
A home health care worker also came to the house to as-
sist with Louis’s shower twice a week.
(continued)
3921_Ch15_477-520 05/06/14 11:18 AM Page 507
508 Nursing Care of Families in Clinical Areas
The social worker at the nursing facility had suggested
that the family contact the Aging and Disability Resource
Center (ADRC) in the community. An Options Counselor
(OC) from the ADRC met with the family in the nursing
facility and again once Louis was home. She was able to
provide information about services beyond those pro-
vided by the home health agency. Once Medicare bene-
fits ran out, she provided them information about home
care workers. Sarah and Louis hired a worker to continue
to help him with showers and to do a little light house-
keeping. The OC also identified an organization that put a
grab bar in the shower and, if needed in the future,
could build a ramp into the house. Because Sarah was
exhausted, the options counselor helped arrange for
home-delivered meals. With time, Louis recovered and
although he now used a cane, he resumed most of his
community activities. His diabetes was once again man-
aged through diet and oral medications and Sarah soon
decided that they no longer needed the home care
worker and meals. They kept the phone number of the
options counselor on their refrigerator in case they
needed assistance in the future.
Transition 4—Carol Apartment to Assisted
Living:
Recall that Carol, Maria’s former mother-in-law, had
been living in an AL for several years. She moved there
because her worsening Parkinson’s disease made it im-
possible to remain at home in her apartment. In the
community, Carol’s main support system came from
friends and neighbors, with Maria and her children
helping when they could. Richard, Carol’s son and
Maria’s ex-husband, lived in another state but would
visit two or three times a year to fix things around the
apartment and to handle Carol’s finances. The year be-
fore Carol moved into the AL, she began losing weight
Nurse Susan
Hospital
social worker
Maria’s
sick father
Maria’s
work
Grandson
Jason
Richard’s
job
Strong relationship
Weak relationship
Tense relationship
Direction of
energy flow
FIGURE 15-2 Hooper family ecomap.
3921_Ch15_477-520 05/06/14 11:18 AM Page 508
Family Health in Mid and Later Life 509
because she was not able to prepare meals. In re-
sponse, Maria and some of Carol’s friends often
prepared meals and froze these meals in individual
portions. Maria also did grocery shopping during her
monthly visits. A local volunteer organization provided
some house cleaning, and friends from Carol’s church
would take her to lunch or bring her dinner at least
once a week. At Maria’s urging, Richard arranged for
meals-on-wheels from a local community center. Carol
often did not eat the food from this service, however
(her reasons included “It’s not like my own cooking,”
and “It all tastes the same”). Several times, when the
volunteer delivered the meal, she found Carol on the
floor because she had fallen. Concern about Carol’s
safety prompted Richard, her friends, and Maria to
convince her to move to the AL, which was also closer
to Maria’s home. Although Carol had limited income
from Social Security, the AL accepted residents
receiving housing subsidy as a Medicaid benefit.
Carol was initially reluctant to move to the AL. She
was not familiar with AL and thought her family wanted
her to move to a nursing home, which she strongly
opposed. She changed her mind after visiting a few AL
communities and learned that she could still have her
own apartment. After moving in, she discovered she
enjoyed the opportunities to participate in many of the
activities. Her strength also improved; at her apartment, it
had been difficult to get regular exercise because of
limited space and a short flight of stairs to get outside.
At the AL, the long hallways provided a safe walking
space, and with the elevator she did not need to worry
about stairs. As a result, she was able to go outside more
often. Carol developed close friendships with several
other residents during the time she lived at the AL. She
recognized that she had become somewhat isolated in
her apartment because of her increasing difficulty with
mobility. As she received three meals daily in the dining
room, her weight improved. She also received assistance
with bathing twice a week. Bathing had been a challenge
in her apartment because she had only a tub and
shower combination, and the owner would not allow her
to have safety bars installed in the bathroom.
Transition 5—Carol Assisted Living to Hospital:
After living successfully in the AL for 3 years, Carol gradu-
ally developed memory problems; her physician was not
sure whether it was Alzheimer’s disease or dementia sec-
ondary to the Parkinson’s disease. The AL staff frequently
had to go find her at mealtimes. Like many older adults,
Carol took several medications, both prescription and
over-the-counter drugs. She had been able to take them
safely and accurately once the med-aide had set them
up for her in a pill box, but now when Maria visited, she
found Carol has not taken about half of the doses. When
cleaning her apartment, the staff also noted clothes
soiled with urine in her bathroom. One morning, when
she did not come to breakfast, the resident assistant
found her still in bed. She was very difficult to wake up,
she had been incontinent, and could not stand even with
the help of the resident assistant. When the AL nurse
came on duty, she assessed Carol and suspected she
had an infection. She contacted Richard, who lives sev-
eral hundred miles away. He called Maria, who arranged
to take time off work and took Carol to see her physician.
The physician determined that Carol was dehydrated and
had a urinary tract infection (UTI). He had her admitted
to the hospital for treatment.
Note that incontinence is not “normal” for older adults;
development of incontinence may indicate a change in
health status. For example, it may be a sign of a UTI. Other
changes in urinary elimination, such as burning or frequency,
may also be signals that further evaluation is warranted. Be-
cause of her memory problems, Carol may not have remem-
bered to mention these symptoms to Maria or the AL staff. If
identified early, the UTI could probably have been success-
fully treated with oral antibiotics and hospitalization avoided.
Unlike nursing homes, ALs do not have nurses avail-
able 24 hours per day; other staff members may have
limited training and experience working with older adults
(unlike nursing homes, training requirements for direct
care workers are limited). Nurses can provide staff
training focusing on normal aging- and health-related
changes. Staff should also understand the importance
of reporting changes in the resident’s usual condition,
such as a change in continence, to the nurse, who
will then follow up with additional assessments and
evaluations. For example, although Carol had memory
problems, she was usually awake and alert, so for
the resident assistant to find her difficult to awaken
represented a significant change.
Transition 6—Carol Hospitalization:
Carol was admitted to a general medical-surgical unit of a
community hospital later that afternoon. The hospital
recently implemented a program similar to the Family-
Centered Geriatric Resource Nurse model that Salinas,
O’Connor, Weinstein, Lee, and Fitzpatrick (2002) describe
(see Box 15-7). This model incorporates the acronyms
SPICES and FAMILY as frameworks for assessing both
the older adult and her family. Susan Jones, the admitting
nurse, obtained the information from Maria and also from
(continued)
3921_Ch15_477-520 05/06/14 11:18 AM Page 509
510 Nursing Care of Families in Clinical Areas
the AL nurse because Carol was still quite lethargic when
she first arrived at the hospital:
• Sleep disorders: No problems.
• Poor nutrition: Carol has a history of problems, but over
the past year her weight has been stable and within the
ideal range for her height.
• Incontinence: As noted earlier, this is a recent develop-
ment. The bathroom in Carol’s apartment has safety bars
and is arranged in a manner that makes it easily accessible
for persons with mobility problems.
• Confusion: The admitting nurse recognizes that Carol is
experiencing the “hypoactive” form of delirium as demon-
strated by lethargy (it was difficult for the resident assis-
tant to get her to wake up) and is at risk for it worsening.
• Evidence of falling: Carol has a history of falls but none
in the past year. She has not sustained any serious
injuries from falling.
• Skin breakdown: No problems.
The nurse continued to collect information using the
FAMILY acronym:
• Family involvement: Carol has regular contact with Maria,
who provides assistance with a variety of needs. Carol
also has come to consider her close friends at the AL to
be part of her family. Her son Richard calls about once a
week but visits infrequently. Susan learns that Maria is
also involved with her own parent care activities and that
her father Louis is recovering from his hip fracture. Maria
has used most of her vacation days providing parent care
and cannot afford to take many days without pay.
• Assistance needed: Because of her current mental status
changes, Carol needs extensive assistance with eating
and drinking, changing position, hygiene, and other activ-
ities. Because Carol has missed some doses of her anti-
Parkinson’s medication, her mobility is not as good as
usual, and she has lost some function even from this
relatively short illness. She may require more assistance
than her family or the AL staff can provide.
• Members’ needs (what family members need from staff
to be able to continue to provide care): Maria needs to
be updated regularly about Carol’s condition so she can
keep other family members informed (particularly Carol’s
son, Richard). She also needs to know whether Carol
will be able to return to the AL, and if not, what options
are available. At the same time, Maria expresses some
resentment to Susan about Richard’s apparent lack of
willingness to step up and take more responsibility for
the care of his mother. She reports feeling pulled by the
needs of her parents, Carol, her grandchildren, and her
sister, who is raising her grandchildren.
• Integration into care plan (inclusion of family in planning
and teaching activities): Susan gives Maria a business card
for the unit social worker; she also shares Maria’s contact
information with the social worker. The team will meet the
following day to evaluate Carol’s situation. She will proba-
bly be in the hospital for 2 to 4 days; therefore, it is impor-
tant to start planning for discharge as soon as possible.
• Links to community support: Before the team meeting,
Susan will follow up with the AL nurse to learn what care
can be provided after discharge. One option could be
for Carol to return to the AL and receive home health
care from an outside agency for additional support and
follow-up.
• Your intervention: On admission, Susan completed the
Confusion Assessment Method (Waszynski, 2007). She
knows that Carol has a diagnosis of dementia. Carol
is too lethargic to participate in any structured assess-
ments of ADL or IADL function. Susan will reassess her
in the morning. By then, Carol should have improved
hydration and will have received a few doses of the
antibiotic to treat the UTI and may be alert enough for
further assessment. This will be important information
to gather before the team meeting.
Transition 7—Hospital to Nursing Home:
Carol’s condition did improve by the next day, but she was
not able to return to the AL because she needed more
assistance than could be provided. She was transferred to
the rehabilitation unit of a nearby nursing home with the
long-term goal to return to AL. She received physical ther-
apy twice daily. Another important aspect of her care was to
get her reestablished on her medication regimen to man-
age the symptoms of her Parkinson’s disease to improve
her mobility. The nursing staff also used scheduled voiding
to help Carol regain continence.
Although Carol experienced some improvements, it
was clear that she would not return to the AL. Richard
reviewed Medicare’s Nursing Home Compare Web site
(www.medicare.gov/nursinghomecompare). Maria called
the Options Counselor who had helped with her father
and was directed to the AARP Web site about choosing a
nursing home (http://www.aarp.org/relationships/caregiv-
ing/info-2006/embedded_sb.html). Finally, they found a
guide to help them select a nursing home that was commit-
ted to culture change and person-centered care. At his chil-
dren’s insistence, Richard made several visits and after
discussion with the administrator and staff, he selected a
facility he thought would best meet his mother’s needs.
Because of her frailty and dementia he opted not to
move her closer to him. Maria and her daughter agreed
to continue monthly visits.
3921_Ch15_477-520 05/06/14 11:18 AM Page 510
Family Health in Mid and Later Life 511
Family Case Study: Brown
Family
Helen Brown and her family illustrate the family lives of
people who have never married and/or have no children in
their social networks. Family lives of these individuals are
often rich, but many experience challenges in old age, par-
ticularly with declining health and abilities, that those with
children and spouses may not encounter. The life course
perspective also informs our understanding of Helen and
her family’s resources, although we will focus mostly on
the intersection with social services, long-term care financ-
ing, and community-based care.
Discussion:
Helen just celebrated her 90th birthday. She enjoyed the
gathering of friends and family and felt quite special. Helen
never married, caring for her disabled mother when she was
young and middle-aged. Her father died when she was 6
and her brother was 3. Her mother supported the family as
a seamstress. Later, Helen supported her mother and herself
as a school teacher, with her brother occasionally helping
out. Helen retired shortly before her 65th birthday but con-
tinued teaching piano lessons well into her eighties. Her
mother died shortly after Helen’s retirement, after a brief
illness. Helen then became involved in many volunteer
activities, which she found fulfilling. Although she has “re-
tired” from most of her volunteer activities, Helen still enjoys
being out of doors and always has had a garden full of veg-
etables and flowers. She has many close friends and feels
very tied to the community through her long involvement as
a teacher and community member. She never regretted not
getting married and although she wondered what it would
have been like to have children of her own, she found satis-
faction with her students and nieces and nephews. All in all,
Helen feels she has had a full and rich life.
It is only in the past year that Helen has begun to feel
somewhat vulnerable. She lives in the two-story home that
she shared with her mother. Most of the neighbors she
was close to have moved away, although she has made
efforts to meet some of the new ones as they move in.
She describes herself as in good health, but has had in-
creasing difficulties with balance. This began after a bout
with the flu 3 months ago. With great reluctance, she
started using a walker when she leaves her home, which
she tries to do every day when the weather is good. She
also has much less energy than she used to have and
finds housework and meal preparation daunting. She is no
longer able to go up or down stairs without a lot of effort.
Still, she is adamant about remaining in her own home and
is determined to get her strength back. She has a modest
income, mostly Social Security and a very small pension,
totaling about $2,200 per month. She had trouble paying
her heating bills last winter. She frets over her garden.
When she got sick, she began paying one of her youngest
great-nieces to help keep it weeded, but her niece will be
moving away to attend college soon.
Helen has two relatives of her generation who live nearby
and have been central to her social network (see Figure 15-3,
the Brown family genogram). Both have her very worried.
Her younger brother Roy, 87, is widowed and is dealing with
prostate cancer, now at stage three. His children are attentive,
but are debating among themselves about his living situation.
Two of his children feel he needs 24-hour care in a nursing
home, and the other two feel that he needs to be in familiar
surroundings without a lot of strangers around. His physician
has suggested that they consider hospice care. His children
are all over 60 and only two live close by.
Mostly, Helen is fearful for her cousin and best friend,
Alice, who is 88. Like Helen, Alice did not have children
of her own. She did marry, however, and her husband,
Charles, had several siblings. Charles and Alice doted on
their many nieces and nephews and their home was often
a fun-filled destination for these children and later for their
children. Alice’s husband was a successful businessman
and Alice had a lot of money after he died. She was glad
to help out her nieces and nephews as they went through
school, got married, and had children of their own. As
Alice’s health began to decline, Beth, one of her nieces, of-
fered to move in to help her out. It seemed like a good
idea, but now Helen hardly talks to or sees Alice. When
she does, Alice’s manner has changed: she is no longer
upbeat, she is not keeping herself carefully groomed, and
seems quite distracted. She has also lost weight. One of
Alice’s nephews told Helen that many of the family photos
have been removed from Alice’s walls. Helen noticed that
Beth is driving a new car, has very fashionable clothes, and
recently went to Europe with her boyfriend and her daugh-
ter. Helen hates to think that Beth is stealing from Alice, but
she can’t come up with an alternative explanation. Because
Roy is so sick, she is not sure who she should talk to.
Transition 1—Independence to Supportive
Services:
As she has begun to “slow down,” as she puts it, Helen is
increasingly worried about her ability to maintain her inde-
pendence (see Figure 15-4, the Brown family ecomap).
She tried to save money for “a rainy day” because she has
no children to provide support, but knows her funds are
limited. Through friends and the local Senior Center, she
made a connection with an Options Counselor to help
(continued)
3921_Ch15_477-520 05/06/14 11:18 AM Page 511
512 Nursing Care of Families in Clinical Areas
Helen make a plan for herself. The Options Counselor
learned that staying at home and in her neighborhood is
very important to Helen. Helen has important strengths
that make this possible. She is capable of making decisions
for herself and she is successfully managing her health. Im-
portantly, she is determined to get better and stay well and
is doing the things that will make that possible. She is en-
gaged in her community and has good relationships with
others and at least one great-niece is likely to provide
short-term assistance should she need it.
The options counselor helps Helen to come up with
strategies that will keep her active. This includes taking
advantage of a low-cost transportation service to visit the
Senior Center where she can continue volunteer activities
and participate in an exercise group. The van also stops at
the grocery store twice a week. She also learned that she
can afford to use the services of a small nonprofit garden-
ing organization that teaches children to garden. The staff
of this agency will work with children in Helen’s garden in
exchange for sharing in Helen’s harvest. Finally, she learned
about an energy assistance program that will reduce her
monthly payments.
Transition 2—Transition to Hospice:
Health providers have an important role in communicating
with and supporting families as the end of life approaches
(see Chapter 10). In this case study, health professionals
will have to be sensitive in working with Roy’s children.
Alice
88 yr
Helen
90 yr
Uses
walker
Roy
87 yr
67 yr 64 yr
65 yr
Prostate
hospice
CA
FIGURE 15-3 Brown family genogram.
3921_Ch15_477-520 05/06/14 11:18 AM Page 512
Family Health in Mid and Later Life 513
Although hospice care is provided in residential care set-
tings, nursing homes, and at home, Roy needs to be in-
volved as much as possible regarding the location of
services. Health professionals can help families explore
pros and cons, alleviate fears and uncertainties, and help to
identify services that will support the family, as well as Roy.
By including Roy in discussions with his children, hospice
workers helped Roy’s children come to agreement that
hospice care at home was a feasible and desirable option
for Roy. They helped establish a schedule and a list of tasks
so that each child and grandchild could be present in a
way that was comfortable for them and for Roy. They were
able to supplement with paid caregivers to assist family
members who were not comfortable being alone with Roy
in case he needed help they did not feel comfortable pro-
viding. One of his children made sure that Helen was able
to visit with Roy during the last days of his life. Roy’s symp-
toms were well managed and he died peacefully at home.
Transition 3—Transition to Assisted Living:
At her most recent visit to her nurse practitioner, Helen
began to describe her worries about her cousin. The NP
listened carefully and took down Alice’s name, address,
and contact information. After Helen left, the NP contacted
Adult Protective Services and reported this potential abuse.
The agency followed up with Alice and did find evidence of
neglect and financial exploitation, and worked with the
family to recover some of Alice’s funds and to get appropri-
ate help into her home. (Helen could also have alerted her
Options Counselor to the possibility of abuse and the Op-
tions Counselor would have made the referral to protective
services.) As a result of their investigation into Alice’s situa-
tion, the protective service worker suggested that Alice be
evaluated for dementia; older single women with dementia
and living alone are at risk for financial exploitation.
The situation with Beth caused considerable tension
and conflict within the family. Beth denied that she had
taken funds inappropriately and insisted that Alice had, as
she had in years past, insisted on giving Beth money. Beth
felt she earned those funds because of the increasing diffi-
culty in taking care of Alice as her health and cognitive sta-
tus declined. Some were supportive of Beth, but other
family members blamed Beth for isolating Alice from other
family members, keeping her deteriorating cognitive status
Health care
providers
Great
niece
Senior
center
Roy
RN at
assisted
living
Options
counselor
Alice FriendsHelen
90 yr
Strong relationship
Normal relationship
Tense relationship
Direction of
energy flow
FIGURE 15-4 Brown family ecomap.
(continued)
3921_Ch15_477-520 05/06/14 11:18 AM Page 513
514 Nursing Care of Families in Clinical Areas
and can count on family members to provide
care and support when needed. Nonetheless,
it is also common for families to have both
positive and negative feelings toward one
another because they are providing support.
In some families, negative feelings may pre-
dominate, which will have consequences
for health, well-being, and availability of
support.
■ Older adults, especially those of advanced
years, have unique health care needs that
must be addressed whether in clinics, at
home, in hospitals, or through a variety
of LTC services.
■ Nursing and other professionals in gerontol-
ogy have developed evidence-based assess-
ment tools and interventions that are the
basis for optimal care. Nurses must be famil-
iar with these tools and apply them routinely
and appropriately.
■ Professionals must also recognize that older
adults, including many care recipients, are
also providers of care to their spouses,
children, grandchildren, or friends. In fact,
family members deliver the majority of care.
■ As the population ages, it is increasingly
important that nurses develop expertise in
geriatric care, regardless of setting. Nurses
with strong leadership skills are needed,
especially in community-based care and
nursing home settings.
■ In all settings, nurses must partner with
elders and their family members in designing
and providing care that addresses unique
needs and supports relationships.
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SUMMARY
This chapter has described the aging population
in the United States and provided an overview of
family ties of older adults.
■ Using the life course perspective, we discussed
the diversity of family structure in later life
and how it has been influenced by societal
trends, such as increasing life expectancy,
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previous generosity. Not all family members agreed with
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As the extent of Alice’s condition became clear to the
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521
Family Mental Health Nursing
c h a p t e r 16
Laura Rodgers, PhD, PMHNP
C r i t i c a l C o n c e p t s
■ All parts of the family system are interconnected; therefore, all members are affected when a member has a mental
health condition.
■ The family of a person with a mental health condition needs to be involved in treatment because it enhances the
effectiveness of the health care treatment.
■ Comorbidities are frequently present when someone has a mental health condition (e.g., depression often coexists
with eating disorders or anxiety disorders; substance abuse and alcohol/drug addictions commonly occur with mood
disorders). As a result, mental health conditions typically require integrated and complex treatment.
■ Psychoeducation and participating in formal and/or informal support groups are effective interventions for family
members who have a member with a mental health condition.
■ Nurses must examine their personal attitudes and stigmas toward persons and families who have a member with a
mental health condition and seek additional education and training to challenge the negative stigmas so they can
then serve as effective advocates for these families in both community and acute care settings.
■ Nurses must use nonjudgmental and nonblaming communication interactions with families who have a member
with a mental health condition in order to establish a therapeutic professional relationship with the family.
Mental health has been defined as a (1) state of well-
being such that (2) an individual is able to perform
mental functions that allow her to adapt to change
and cope with adversity in order to (3) function
well in society while (4) being mostly satisfied
with life in general (American Nurses Association
[ANA], American Psychiatric Nurses Association
[APNA], & International Society of Psychiatric–
Mental Health Nurses [ISPN], 2007). In other
words, an individual has achieved a state of mental
health when she is able to adapt to internal and
environmental life stressors, as demonstrated by
age and culturally appropriate thoughts, feelings,
and behaviors (Robinson, 1983). A person who can
cope with the normal stress of family, work, and
friends; can work productively; and is able to make
a contribution to her community (World Health
Organization [WHO], 2001a) would represent
someone in a state of psychological, emotional, and
social well-being.
By contrast, a disturbance in thoughts or mood
caused by a mental disorder or mental illness can
lead to maladaptive behavior, inability to cope with
normal stresses of life, and interference with daily
functioning (ANA, APNA, & ISPN, 2007). The
diagnoses of mental disorders are based on diag-
nostic criteria from either the American Psychiatric
Association’s (APA’s) (2013) Diagnostic and Statistical
3921_Ch16_521-558 05/06/14 11:19 AM Page 521
522 Nursing Care of Families in Clinical Areas
Manual of Mental Disorders, Fifth Edition (DSM-5) or
the International Classification of Disease–10 (ICD-10),
which is endorsed by the WHO (2010). The
DSM-5 was 13 years old before its recent revision
and the ICD-10 is currently under revision and due
to be released within the next several years. Each
describes mental disorders as conditions character-
ized by alterations in a person’s thinking, mood, or
behavior that (1) cause an individual distress, (2) im-
pair his occupational or social functioning, and/or
(3) place the individual at significant risk for expe-
riencing death, pain, disability, or a loss of freedom
(APA, 2013).
Rather than describe an individual who has been
diagnosed with a mental disorder as “mentally ill,”
the term used throughout this chapter will be “an
individual with a mental or behavioral health con-
dition,” or a person with an MHC. Although men-
tal disorders have discrete diagnostic criteria, there
are some mental disorders that consume a larger
burden of care in the community and often have the
most negative and intrusive effects on an individ-
ual’s life and on family members’ lives. Individuals
with these disorders will be noted as persons with a
serious mental illness (SMI). Examples of disorders
that cause significant impairment to an individual
throughout his lifetime are schizophrenia, bipolar
disorder, pervasive developmental disorders, and
major depressive disorder. The Substance Abuse
and Mental Health Services Administration
(SAMHSA) (2012a) has defined persons with SMIs
as individuals 18 or older who currently or at any
time in the past year have had a diagnosable mental,
behavioral, or emotional disorder (excluding devel-
opmental and substance use disorders) that has
met diagnostic criteria specified in the DSM-IV
(APA, 2000), has resulted in serious functional
impairment, and has substantially interfered with
one or more major life activities. On the other hand,
examples of disorders that typically do not cause sig-
nificant social, emotional, or behavioral disability
include generalized anxiety disorder, adjustment
disorder, and dysthymia.
This chapter covers mental health family nurs-
ing. The chapter begins with a brief demographic
overview of the pervasiveness of MHCs in both
Canada and the United States. The remainder of
the chapter focuses on the impact a specific mental
health condition can have on the individual with
the MHC, individual family members, and the
family as a unit. Although the chapter does not go
into specific diagnostic criteria for various condi-
tions, it does offer nursing interventions to assist
families. Note that the impact and treatment of
substance abuse is discussed within the Johnson
family case study.
MENTAL HEALTH CONDITIONS IN
THE UNITED STATES AND CANADA
The WHO (2001a) estimated that more than 25%
of people worldwide will be affected by an MHC
at least once in their lifetime and that approxi-
mately 10% of the adult population at any given
time has an MHC. More specifically, 20% of adult
Canadians (those 18 and older) have an MHC
(Mental Health Commission of Canada, 2012) and
the remaining 80% have a friend, family member,
or colleague who has an MHC (Health Canada,
2002). Similarly, 20% of adults in the United States
have an MHC in a given year and a subpopulation
of about 5.4% have SMIs (U.S. Department of
Health and Human Services, 1999). Researchers
estimate that, in the United States, the chance of
being diagnosed with any MHC during one’s
lifetime is 46.4% (Kessler, Berglund, et al., 2005),
and the overall prevalence of mental disorders is
about the same across genders (WHO, 2001a).
This section addresses the prevalence of MHCs
in the United States and Canada, comorbidities
associated with MHCs, general approaches being
taken toward those with MHCs, and the stigma
associated with having an MHC.
Prevalence of MHCs
Mental disorders are the leading cause of disability
in both Canada and the United States (WHO,
2008) and of all diseases, with the exception of
heart disease, account for the most years lived with
a disability (National Institute of Mental Health
[NIMH], 2001). Only one-third of those persons
who need mental health services in Canada receive
the care (Statistics Canada, 2002) and only 5.5% of
these conditions receive health care dollars even
though these illnesses constitute more than 15% of
the burden of disease in Canada (Institute of
Health Economics, 2008); in other words, though
15% of the estimated costs associated with all dis-
eases in Canada are due to mental health condi-
tions, insufficient monetary resources are allocated
3921_Ch16_521-558 05/06/14 11:19 AM Page 522
to mental health services. In the United States,
adult outpatient mental health services are paid for
by private health insurance (37.9%), self-payment
or payment by a family member living in the
household (33.7%), Medicare (15.2%), Medicaid
(11.9%), or an employer (11.9%) (SAMHSA,
2012b). Only 17.4 million adults in the United
States received mental health services in 2001 de-
spite there being 45.6 million adults with mental
illness (SAMHSA, 2012b). Financial costs may be
a barrier to people accessing care.
In 2001 in the United States, the percentage of
persons 18 or older who had any diagnosable men-
tal, behavioral, or emotional disorder (excluding
developmental and substance use disorders) of
sufficient duration to meet DSM-IV-TR diagnos-
tic criteria within the past year was 15.9% among
Hispanics, 16.1% among Asians, 18.8% among
blacks, 20.5% among whites, 28.3% among persons
reporting two or more races, and 28.9% among
American Indians or Alaska Natives (SAMHSA,
2012b). Although MHCs are pervasive across the
general population in Canada and the United
States, some groups experience a greater impact
of poor mental health. In Canada, families in the
lowest income group are three to four times more
likely to report poor mental health than those in
the highest income group (Statistics Canada, 2002).
Likewise in the United States, the number of per-
sons with an MHC is highest among low-income
families (SAMHSA, 2012b).
Mental Health and Comorbidities
It is common for someone with an MHC to have
another condition, either mental or physical; the
coexistence of multiple conditions is termed co-
morbidity. For example, depression often coexists
with eating disorders such as anorexia nervosa
and bulimia nervosa, or anxiety disorders, such as
post-traumatic stress disorder (PTSD), obsessive-
compulsive disorder, panic disorder, social pho-
bia, and generalized anxiety disorder (Devane,
Chiao, Franklin, & Kruep, 2005). Likewise, the
coexistence of substance abuse and mood disorders
has been documented among the U.S. population
(Conway, Compton, Stinson, & Grant, 2006).
Women are more prone than men to having a
coexisting anxiety disorder at the same time as de-
pression and men are more likely than women to
exhibit alcohol and substance abuse or dependence
when depression is present (Kessler et al., 2003).
Given the prevalence of comorbidities, it is im-
portant that nurses take a holistic view of the per-
son with an MHC and approach interventions
from multiple perspectives, rather than simply
focusing on a single MHC.
Family Mental Health Nursing 523
Serious physical medical illnesses may accom-
pany, and even be exacerbated by, a mental health
condition. For example, heart disease, stroke, cancer,
HIV/AIDS, diabetes, Parkinson’s disease, thyroid
problems, and multiple sclerosis are some of
the conditions that often coexist with depression
(Cassano & Fava, 2002). There is evidence that
when depression accompanies a serious physical
illness, both conditions tend to show more severe
symptoms, medical costs increase, and people
have more difficulty adapting to the physical
condition compared to those without the MHC
(Katon & Ciechanowski, 2002). Treating the
depression along with the coexisting physical ill-
ness may help ease both conditions (Katon &
Ciechanowski, 2002).
Mental Health and General Approaches
Toward Those With an MHC
Recovery from a mental health disorder is the major
goal for mental health care. SAMHSA (2012a) has
established a set of principles for recovery and has
defined recovery as “a process of change through
which individuals improve their health and wellness,
live a self-directed life, and strive to reach to their
full potential” (p. 3). Health, home, purpose, and
community have been identified as the four major
areas that contribute to maintaining a life in recovery.
3921_Ch16_521-558 05/06/14 11:19 AM Page 523
The 10 guiding principles of the Recovery Model
are as follows:
■ Hope
■ Person-driven
■ Many pathways (nonlinear)
■ Holistic
■ Peer support
■ Relational (interactions with others, both
formally and informally)
■ Culture
■ Addresses trauma
■ Strengths/responsibilities
■ Respect
Unlike previous views of MHCs, especially in
relation to the more severe conditions, that some
MHCs are chronic and very difficult if not impos-
sible to manage, part of the recovery model is the
assertion that there are no limits to the potential
for an individual to recover from any mental health
condition (Till, 2007).
Another recovery model with a similar philoso-
phy has been implemented in Canada. Called the
Tidal Model, it also emphasizes a shift in how
nurses think about the care provided to people with
an MHC. Rather than focusing on disease and
illness, this model stresses the importance of the
individual with an MHC actively participating
in decision making related to care and including
family in the overall care (Caldwell, Sclafani,
Swarbrick, & Piren, 2010). The Tidal Model was
developed by nurses in collaboration with other
mental health care providers and has transformed
nursing practice in mental health care settings
(Brookes, Murata, & Tansey, 2006, 2008). At the
center of both of these models, the Recovery
Model and the Tidal Model, is the philosophy that
nurses recognize the uniqueness of each individual
with an MHC and that nurses must collaborate
not only with these individuals to provide person-
centered care, but also with their families. There
are improved outcomes when this collaboration
takes place (Kaas, Lee, & Peitzman, 2003), such as
reduced morbidity and mortality rates in persons
with MHCs and improved preservation of the psy-
chological and physical health of their family mem-
bers. In line with this philosophy, the President’s
New Freedom Commission on Mental Health
(2003) final report (Box 16-1) recommended six
national goals to move mental health care in the
United States toward a recovery-oriented system,
with the overall goal of improving mental health
care for Americans.
Also in line with this philosophy, there has been
an international trend to provide care to persons
with an MHC in the community rather than in an
institutional setting. Past practice had been to in-
stitutionalize persons with an MHC, often for a
lengthy period of time; however, the recovery ap-
proaches shift both the focus and the locus of care
provision. Large inpatient, mental health care in-
stitutions have been closed in most areas, but many
governments have not provided funding for other
resources to deliver the care that persons with an
MHC might need. This change has resulted in the
transfer of care from the institutional to the family
level, a fact that is especially pertinent for families
providing care to individuals with SMIs (Doornbos,
2002). The stress and burden of care experienced
by these families has been well documented
(NIMH, 2001). Families often suffer financial and
social deprivations when providing care to family
members with an MHC, and they often live in
fear that the family member with an MHC will
cause disruption to family life due to a recurrence
or exacerbation of the MHC (WHO, 2001b).
Common needs for families living with a family
member with an MHC are support, information,
skills and training, advocacy, and referral sources
(Yamashita & Forsyth, 1998).
More than ever, families are an integral and in-
strumental resource for recovery for individuals
524 Nursing Care of Families in Clinical Areas
BOX 16-1
Goals Identified by the New Freedom
Commission on Mental Health
■ Americans understand that mental health is essential
to overall health.
■ Mental health care is consumer and family driven.
■ Disparities in mental health services are eliminated.
■ Early mental health screening, assessment, and referral
to services are common practice.
■ Excellent mental health care is delivered and research
is accelerated.
■ Technology is used to access mental health care and
information.
Source: New Freedom Commission on Mental Health. (2003).
Achieving the promise: Transforming mental health care in
America. Rockville, MD: U.S. Department of Health and
Human Services. Retrieved from http://govinfo.library.
unt.edu/mentalhealthcommission/reports/reports.htm
3921_Ch16_521-558 05/06/14 11:19 AM Page 524
with an MHC and especially those individuals with
an SMI. One qualitative Canadian study examined
the role of family in supporting recovery for people
with an MHC who lived in structured, community
housing (Piat, Sabetti, Fleury, Boyer, & Lesage,
2011). The researchers found that, even though the
mental health consumers lived apart from their
families and relied heavily on formal services, the
residents identified their families—more than
mental health professionals, friends, or residential
caregivers—as those who most believe in them and
in their recovery. These same mental health con-
sumers stated that their recovery was supported by
their families’ affection, emotional support, and
active involvement. Families offered more hope in
recovery than professional providers. It is evident
that nurses and other health professionals must
engage the families of individuals with an MHC in
their recovery.
Mental Health and Stigma
Stigma has been defined as labeling, stereotyping,
separation, status loss, and discrimination (Link,
Yang, Phelan, & Collins, 2004). Our society singles
out mental illness as undesirable and devalues the
person who possesses an MHC (Brunton, 1997).
Society’s stigma influences how an individual feels
about himself, which can lead to self-stigma and
can exacerbate mental health conditions (Link &
Phelan, 2001). The media are responsible for per-
petuating misconceptions about persons with an
MHC (Mental Health America, 2012), often by
sensationalizing crimes in which persons with an
MHC are involved and using pejorative terms to
describe the individual with the MHC.
Stigma affects both the individual with the
MHC and the family members. As family members
become responsible for providing more and more
care to individuals with an MHC, they are report-
ing their perceptions of caregiving as stressful and
stigmatizing (Dalky, 2012). For example, families
may perceive that their family reputation has been
disgraced because a member has a mental illness;
they may be embarrassed at the behavioral out-
bursts sometimes associated with MHCs (Dalky,
2012). Stigma can cause individuals with an MHC
and their families to become isolated and feel
ashamed or stigma can make individuals and family
members engage in denial or a wish for things to
appear normal, which may then discourage them
from talking about their needs and seeking help
(Abrams, 2009).
Stigma and discrimination toward persons with
an MHC can prevent care and treatment from reach-
ing people with mental illnesses (WHO, 2001a).
For example, stigma toward a parent who has an
MHC, or who is providing care to a child with an
MHC, may prevent the parent from obtaining com-
munity support because of her fear that others may
assume she is not a fit parent; she may not access
care because she fears losing custody of her child
(Obadina, 2010). People with MHCs also may fear
workplace reprisals if they seek mental health care
through work-provided insurance.
In fact, the stigma can be quantified. Just over
50% of Canadians say they would tell a friend or
coworker that a family member has an MHC, com-
pared to 72% who would discuss a cancer diagnosis
or 68% who would discuss diabetes in the family
(Canadian Medical Association, 2008). Only 12% of
Canadians would hire a lawyer who has an MHC;
just 49% would socialize with a friend who has
an SMI; and many Canadians (46%) think that
people use mental illness as an excuse for bad be-
havior (Canadian Medical Association, 2008). The
proportion of Americans who believe SMI is asso-
ciated with violent and dangerous behaviors dou-
bled between 1950 and 1996 (Phelan, Link, Stueve,
& Pescosolido, 2000), and 27% of Canadians
are fearful of being around people with an SMI
(Canadian Medical Association, 2008). Unfortu-
nately, nurses and professionals are not immune to
demonstrating stigma toward individuals with an
MHC and their families. For example, nurses pro-
viding care to a mother parenting a child with
attention-deficit hyperactivity disorder (ADHD)
may blame poor parenting for the child’s behav-
ioral challenges.
But there is some cause to hope for decreasing
stigma toward those with an MHC. For instance,
in 2006, 67% of the public agreed that depression
had a neurobiological cause compared to only 54%
in 1996 (Pescosolido et al., 2010). Personal contact
with someone with an MHC has been shown to de-
crease one’s stigma toward persons with an MHC
(Schafer, Wood, & Williams, 2010). In addition,
peer-led interventions have been shown to be ef-
fective in reducing family self-stigma (Perlick et al.,
2010). Education of health care professionals about
specific disorders and their treatments can also help
reduce or prevent behaviors or discrimination due
Family Mental Health Nursing 525
3921_Ch16_521-558 05/06/14 11:19 AM Page 525
to stigma. Increased understanding about the
symptoms and behaviors arising from an MHC
allows professionals to provide optimal care. For
instance, instead of blaming poor parenting, nurses
working with a mother whose child has ADHD can
focus on identifying those behaviors that are
ADHD related and work with the mother to de-
velop targeted interventions that compensate for
the executive function deficits and emotional dys-
regulation issues associated with this condition.
FAMILY MEMBERS OF INDIVIDUALS
WITH A MENTAL HEALTH
CONDITION
The whole family may be affected by and involved
in care of the member who has an MHC, or indi-
vidual relationships and responsibilities may be
more pronounced. For example, a spouse may be
providing care to her husband. Parents may be pro-
viding care to young or adult children. In some
cases, the parent has the MHC and so a child takes
care of the parent. Siblings may provide care for
siblings, and so on. The “normal” relationships and
dynamics within the family may be disrupted.
Nurses need to pay attention to family dynamics
and to the potential burdens faced by individual
members and the family as a whole when a member
has an MHC. This section focuses on the general
burden of family caregiving, spousal caregiving,
role changes within the family, children living with
a parent or sibling who has an MHC, and parenting
a child who has an MHC.
Burden of Family Caregiving
Family caregivers often take on their role because
of a sense of responsibility, as well as a perceived
lack of available resources or services (Decima
Research Inc., 2004). Families who provide care for
a family member with an MHC can find the role
demanding and stressful. Research has shown that
family members and caregivers of persons with an
MHC experience shame, guilt, and sorrow (Sjoblim,
Pejlert, & Asplund, 2005), as well as chronic stress,
poor health behaviors, and adverse immune and
neuroendocrine consequences (Nadkarni & Fristad,
2012). Financial stress related to insufficient re-
sources, educational level, and the age of the care
provider also affects the care provider’s burden
(Tan et al., 2012). Single, divorced, separated, or
widowed caregivers have more depressive symp-
toms than married care providers (Kamel, Bond,
& Froelicher, 2012). Women are typically the
providers of care, with estimates ranging from
56.6% to 69% of caregivers (Zauszniewski, Bekhet,
& Suresky, 2008). Each year, 54 million Americans
are affected by an SMI and though the women who
provide care to their family members with an SMI
are resourceful, the overall burden causes many of
these women to experience depression, poorer
quality of life (Zausniewski et al., 2008), and lower
levels of subjective well-being and physical health
than men who are caregivers (Moller, Gudde,
Folden, & Linaker, 2009; Pinquart & Sorensen,
2006). Regardless of the relationship of the care-
giver to the person with the MHC, formal (profes-
sional therapy) and informal (social, including
support groups) support has been shown to buffer
the caregiver’s symptoms of depression (Chen &
Lukens, 2011).
A small qualitative Canadian study (Veltman,
Cameron, & Stewart, 2002) confirmed the paradox
that family care providers report not only negative
impacts of providing care to a relative with an
MHC but also beneficial effects, such as feelings of
gratification, love, and pride. Most respondents in
the study believed that caregiving made them
stronger, more patient, and more appreciative of
time with their families, as well as less judgmental
of others (Veltman et al., 2002). Family caregivers
also report being more secure (Foster, 2010) and
sensitive (Chen & Lukens, 2011), and having
more hope (Tranvag & Kristofferson, 2008). Many
family care providers gain a deep respect for their
family member’s struggle, as portrayed in this
mother’s comment about providing care to her son
who has schizophrenia: “He’s always on my mind,
I’m always worried about him, it breaks my heart,
I wish he had friends, I wish he had a job, but he
tries the best he can, the best he knows how, strug-
gling every day, I don’t know how he does it, but
I’m proud of each of his accomplishments, no
matter how small” (Veltman et al., 2002, p. 112).
Caregivers express worries about the deteriora-
tion of their family member’s general health over
time as the care recipient ages (Corsentino, Molinari,
Gum, Roscoe, & Mills, 2008). Moreover, care
providers frequently mention that their own physical
health as they age is a major issue for them. But what
526 Nursing Care of Families in Clinical Areas
3921_Ch16_521-558 05/06/14 11:19 AM Page 526
caregivers fear the most is what happens to the indi-
vidual with an MHC if the caregiver is no longer
able to provide care (Corsentino et al., 2008).
Spousal Caregiving
Approximately one in four family caregivers caring
for someone with a mental illness provide care to
a spouse (Decima Research Inc., 2004). Care is
typically provided in the family home and the most
common tasks performed on a daily basis are pro-
viding companionship, providing emotional sup-
port during a crisis, and monitoring symptoms
(Decima Research Inc., 2004). Other aspects of
care include providing or monitoring medications,
paying bills, advocating for the person to receive
help, arranging and coordinating services and ap-
pointments, assisting with personal grooming,
looking after household chores, and going to ap-
pointments with the person who has an MHC
(Decima Research Inc., 2004). These tasks and as-
pects of care are common to anyone who has an
MHC, regardless of whether the person is the
spouse, child, sibling, and so on.
Spousal care providers may feel angry about the
changes that they see in their spouse due to the
onset, exacerbations, and remissions of the MHC
(O’Connell, 2006). Spouses may find themselves
blaming their spouse for having a character flaw
rather than understanding the cause of and treat-
ments for the MHC. Additional financial and parental
responsibilities can also increase the stress and
negatively affect the relationships between family
members. Couple and family therapy and spousal
support groups can help these families adapt to the
demands of the MHC (O’Connell, 2006).
Family Role Changes
It is not unusual for family caregivers of persons
with an MHC to change their relationships or roles
within the family (Ali, Ahlstrom, Krevers, &
Skarsater, 2012). For example, an adult younger
brother may find it challenging to maintain his role
as younger brother, while also being caregiver and
guardian to his older sister who has an SMI. On the
other hand, Aldridge (2006) contended that chil-
dren as caregivers to parents do not necessarily
change their status. Rather, the child may take on
some parenting roles—such as providing personal
and emotional care to a parent, engaging in house-
hold chores, providing care to brothers and sisters,
administering medication to parents, or providing
crisis support to a parent during an acute psychotic
episode or self-harming—but not others (Aldridge,
2006). Thus, parents may maintain their role as par-
ents, though there might be some interdependence
between the child and parents. Being a child (under
the age of 18 years) in the caregiver role to a parent
can have a positive effect on the child’s develop-
ment, including improved family relationships, but
it can also negatively affect the child’s development
and overall childhood experience (Aldridge, 2006).
Role changes may not be welcomed by the fam-
ily. For instance, some family caregivers describe
feeling obliged to provide care to their relative with
an MHC, whether the obligation is willingly ac-
cepted or suddenly pushed on them (Rowe, 2012).
They may find themselves needing to learn about
their legal and moral roles in the new caregiving
situation. Family care providers often struggle with
unexpected and unfamiliar expectations placed on
them in their new roles. Legal and moral rights re-
lated to providing care to the family member with
an MHC often cause conflict between the family
care provider and the professional staff. Frequently,
professional staff members neither appreciate nor
understand the legal needs and moral rights of the
family care provider but, rather, focus on the legal
and moral rights of the person with the MHC. For
example, professionals may pressure a parent to
take his adult child home with him because they
believe that the person with the MHC will benefit
by being cared for at home. But the parent may not
feel that he has the capacity to care for his daugh-
ter, or he may have made a decision not to attempt
to provide care because of previous negative con-
sequences to the family when the daughter has
been at home. This difference in perspectives can
cause barriers between health care professionals
and family care providers (Rowe, 2012). It is im-
portant to note, however, that family care providers
and families in general want to be included and
supported in the treatment and care decision
making for their family member.
Children With a Family Member With a
Mental Health Condition
When an adult with an MHC accesses care, it is
imperative that nurses ascertain whether there are
children in the family because research has shown
that children living with a family member with an
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MHC are at increased risk for developing psy-
chopathology; developing emotional and behav-
ioral problems (Ahern, 2003; Korhonen, Pietila, &
Vehvilainen-Julkunen, 2010), including anxiety or
personality disorders (Kendler & Gardner, 1997);
suffering abuse and neglect (Mahoney, 2010); and
being involved in accidents (Obadina, 2010). Men-
tal health professionals often overlook children
who live with a family member with an MHC; they
focus their attention solely on the individual who
has the MHC. Unless a child shows signs of abuse
or neglect, or is in the custody of child protective
services, children tend to be invisible to the profes-
sionals who are treating the child’s parent (Gladstone,
Boydell, & McKeever, 2006). Even though one in
six Canadian children younger than 12 years of
age live with a family member who has an MHC
(Bassani, Padoin, Phillip, & Veldhuizen, 2009),
nurses who provide care to adults with an MHC in-
consistently ask if there are children in the family
(Foster, O’Brien, & Korhonen, 2012). One recom-
mendation to avert omission of this important
information is to change the hospital assessment
forms to include a section that asks about children
living in the home (Mordoch & Hall, 2002). Re-
gardless, nurses should make it standard practice to
ask the question.
Not only should nurses determine if there is a
child in the family of a person with an MHC, but
nurses need to understand that children may per-
ceive their own role in a negative way. Strained re-
lationships between family members are not
uncommon and can lead to a chaotic family life
(Foster, 2010). Appropriate assessment and inter-
vention are important to ameliorate any negative
consequences for a child who is living with a person
who has an MHC, regardless of whether that per-
son is the child’s parent or sibling or has another
relationship with the child. At the same time,
nurses should remember that, in spite of the asso-
ciated risks, many of these children remain emo-
tionally and mentally healthy (Ahern, 2003; Place,
Reynolds, Cousins, & O’Neill, 2002).
Nurses need to be aware that children living
with a family member with an MHC often believe
they caused the MHC and may have feelings of
guilt, anger, or anxiety (Obadina, 2010). In addi-
tion, the children may feel alone (Foster, 2010).
Nurses must initiate a conversation with the child
and not wait until a child asks for help. It is impor-
tant for nurses to tell the child that she did not
cause the parent’s illness or strange behavior nor is
she responsible for taking care of the family mem-
ber; nurses should reinforce that there are profes-
sionals who will provide care to the family member
(Obadina, 2010). Providing age-appropriate infor-
mation about the parent’s MHC and treatment
decreases the child’s feelings of guilt and also de-
creases the child’s negative feelings toward the
MHC (Obadina, 2010). Developing a relationship
with the child ameliorates the feelings of being iso-
lated and alone. If there are several children of dif-
ferent ages in the living situation, the nurse must
remember to provide teaching and answers to each
child, appropriate to the child’s developmental and
cognitive ability. Children who are knowledgeable
about a parent’s illness are able to understand the
parent’s behaviors better in relation to the specific
illness (Mordoch & Hall, 2002). Children need to
be provided thoughtful, developmentally appropri-
ate information about their parent’s illness and
treatment. Children who are not given the whole
story are left to formulate unrealistic scenarios,
which only adds to their emotional confusion
(Mordoch & Hall, 2002). Support for family rela-
tionships and other networks must be part of the
care that nurses provide to parents in any setting
(Korhonen, Vehvilainen-Julkunen, & Pietila, 2008).
While a primary role for a nurse who is provid-
ing care to an adult with an MHC is to identify the
presence of children living in the family and to
offer support and education to those children, the
nurse also needs to perform a family-centered as-
sessment of the children’s needs (Korhonen et al.,
2010), followed by referral to relevant services
(Mahoney, 2010). Once needs are identified, nurses
can develop a plan for assisting the child. For ex-
ample, with parental consent and within the limits
of confidentiality, nurses can contact a child’s
school to apprise teachers or administrators of the
family situation affecting the child (Mahoney,
2010). Nurses can facilitate access to other profes-
sional services and family support, such as family
and/or individual therapy. Therapy that teaches
children and youth how to communicate easily and
have fewer arguments with their parents may be
beneficial as those factors have been shown to
contribute to improved mental health among
adolescents ages 11 to 15 years in a very large
cross-national study involving 43 countries, includ-
ing 26,078 young Canadians (Freeman, King, &
Pickett, 2011). In addition, it is important to
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provide services that can enhance a child’s coping
skills (Ahern, 2003), because children with effective
coping skills are less likely to have behavioral or
emotional problems (Gladstone et al., 2006).
Although the majority of professional services
for family members with an MHC are in the com-
munity, there are times when a family member may
be hospitalized. Nurses need to remember to ask
the hospitalized family member if there are chil-
dren. Children whose family members are hospi-
talized want and need information about the
hospitalized family member (Foster et al., 2012)
and appreciate having a nurse talk with them about
visiting the psychiatric facility and having someone
take a genuine interest in explaining what is hap-
pening to their family member (O’Brien, Anand,
Brady, & Gillies, 2011). Nurses are encouraged to
“view children as complex young persons who are
competent to express their views and recount their
experiences” (Gladstone et al., 2006, p. 2547),
rather than as children who are too young to un-
derstand what is happening. Simple words and ex-
planations can be used even with very young
children and toddlers and may alleviate a lot of the
child’s anxiety.
Children Living With a Parent With a Mental
Health Condition
In addition to the more general areas noted above,
nurses also must recognize that specific issues may
arise when a child is living with a parent with an
MHC. Children growing up with a parent with an
MHC may express anger toward the parent with
the MHC because their parent is not like other
parents and they may experience extreme sadness
when they remember a time that the parent was
healthy (O’Connell, 2006). These children also
frequently worry, often needlessly, that they will
inherit and develop the MHC, but they will only
share this concern with another person after the
person has gained their trust (Foster, 2010). Cir-
cumstances such as maternal depression can have a
negative impact on the child’s normal development
and on his likelihood of developing a mental health
problem. Therefore, nurses need to pay particular
attention to specific risks when the parent is the
person with an MHC.
Risks to Normal Development
Several disorders, including depression, schizo-
phrenia, and bipolar disorder, not only affect an
adult’s ability to parent, but also can have an impact
on a child’s growth and development. It is esti-
mated that about 8% of women of childbearing
age have depression (Smith, 2004). The impact of
maternal depression on children from infancy to
adolescence has been observed in clinic and com-
munity settings. Maternal depression can have neg-
ative effects on a child’s language development and
intelligence, behavior, development of depressive
symptoms, sleep patterns, physical health, parent/
child relationship, and attachment (Smith, 2004).
There is very little information about the effect
paternal depression may have on children’s growth
and development.
Parents with depression may communicate pes-
simism and sadness to their infants, as well as laugh
less and demonstrate less affection, tenderness, and
responsiveness. Decreased close and continuous
contact with infants can have the most harmful ef-
fects on infants (Brockington et al., 2011). A child’s
mental health and social competence is predicted
less by illness variables and categorical diagnosis
than by multiple contextual risks (Brockington
et al., 2011). In any case, Smith (2004) asserted that
effective interventions for the child should occur
before negative outcomes are observed in the child.
These interventions include teaching parenting
skills, assessing the family and children for poten-
tial or actual problems, and minimizing parenting
disruptions.
Children benefit by consistency in parenting be-
havior. Similar to children of parents with depres-
sion, children of parents with bipolar disorder are
at increased risk for parenting disturbances related
to the cyclical nature of the disorder. Inconsistent
parenting behavior can be related to the parent’s
depression, manic/hypomanic or mixed state,
chronicity of episodes, suicidality/suicide attempts,
risky behavior associated with mania, problems
with adherence to treatment, withdrawn/irritable
behavior during a depressed mood, relapse in spite
of treatment, and/or recovery time between
episodes (Nadkarni & Fristad, 2012). Parenting
difficulties in themselves can be challenging stres-
sors for any parent, but parents who have bipolar
disorder may experience exacerbation of the bipolar
symptoms with increases in stress (Calam, Jones,
Sanders, Dempsey, & Sadhnani, 2012). Nurses can
provide assistance to these parents by collaborating
with the parent, child, family, and other profession-
als to address the health needs determined by the
family needs assessment.
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Nurses, teachers, and family members may not
recognize the concerns and issues that children
who are living with a parent who has an MHC can
face unless the child demonstrates a learning or be-
havior problem in school or a parent requests spe-
cific support for the child (Ahern, 2003; Mordoch
& Hall, 2002). Therefore, children of parents with
an MHC should be routinely assessed for parent/
child relational problems and possible developmen-
tal delays so that appropriate interventions can be
implemented in a timely manner.
Risks of Developing a Mental Health Condition
It has been estimated that one in five children have
a parent with an MHC and that they are more
likely than their peers to develop a mental health
problem (Mayberry, Goodyear, & Reupert, 2012).
In one study, 61% of children who had a parent
with depression had developed a mental health dis-
order by adolescence, with 40% to 70% of those
children having a comorbid diagnosis of substance
abuse, dysthymia, and/or anxiety (Beardslee, Versage,
& Gladstone, 1998). Children’s development of de-
pression may be influenced by genetic factors, en-
vironmental influences, marital or partner stress or
violence, or even disruptions in parenting (Smith,
2004). Not only are children who live with a parent
with an MHC at elevated risk for developing a
mental health problem, including being develop-
mentally delayed, but they are also at increased risk
of being abused and neglected (Aldridge, 2006;
Mahoney, 2010). Children of parents with an
MHC should be routinely assessed for potential
mental health concerns and, where warranted, ap-
propriate interventions should be implemented.
Other Risks
Disruption of relationships within the family and
increases in risky behaviors can be an issue, partic-
ularly for youth. Adolescents often give up hope of
being able to live in a family that does not have a
parent with an MHC. They may struggle with the
stigma associated with the MHC and may opt out
of a relationship with the parent and instead use
maladaptive coping mechanisms that can lead to
risky behaviors or problems with the justice sys-
tem (Mordoch & Hall, 2002). Nurses need to be
cognizant of this possibility, make sure to assess
teenagers for adaptive and maladaptive coping
mechanisms, and then intervene as necessary.
Some children have parents with an MHC, such
as schizophrenia, major depressive disorder, or
bipolar disorder, that is more likely than other
MHCs to lead to hospitalization. These children
often worry about what will happen to them if a
parent is hospitalized. A small-scale Canadian study
(Garley, Gallop, Johnson, & Pipitone, 1997) found
that the children’s biggest fear was parental sepa-
ration due to a parent’s illness. The children worry
that they may be removed from their home and
placed in foster care or another unknown living
situation; they worry about what is happening to
their parent who is hospitalized; and they become
anxious when their daily rhythms are disrupted by
their parent’s hospitalization (Mordoch & Hall,
2002). The children become worried and stressed
when no one tells them how their parent is
doing—often leaving them to their own thoughts
and feelings, wondering what is happening to their
parent (Ostman, 2008). Nurses can alleviate some
of the concern and uncertainty by assisting these
families to develop a crisis intervention plan and
inviting the entire family to participate (Reupert
& Mayberry, 2007). This plan should include a
contact person if the parent is ill or in the hospital,
someone with whom each child might stay, and
who should be told if the child is staying with
another friend or family member (Reupert &
Mayberry, 2007).
Nurses also must remember to dispel the myth
that parents with an MHC are unfit parents.
Rather, nurses must emphasize that a parent with
an MHC can be a very competent, effective, nur-
turing, and loving parent. Children and parents
will benefit from continuous assessment of the
child’s needs and ongoing professional support
and treatment for the parents. There are many
effective psychotherapeutic and psychological in-
terventions available, including family therapies,
mother and infant psychotherapies, and brief cog-
nitive therapy appropriate to the age and stage of
child development (Brockington et al., 2011).
Nurses can provide support to parents who have
an MHC by actively listening to the parents’ con-
cerns about parenting, providing realistic infor-
mation about parenting skills, and assessing for
the need for interventions to support the children
(Mahoney, 2010).
Adult children who grew up living with a parent
with an MHC may remember negative experiences
caused by their parent’s illness and the lack of in-
formation and support from mental health services.
They may remember worrying about their parent’s
well-being, wondering if their parent was going
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to commit suicide, being fearful that the parent
was not getting the care needed (Knutson-Medin,
Edlund, & Ramklint, 2007), and being anxious
about coming home from school because they did
not know how their parent was going to respond
to them (Foster, 2010). These adult children may
remember having to approach either the parent
without the health condition or a health profes-
sional to get information about their parent’s con-
dition, rather than the professional offering them
this information. Sadly, some may recall growing
up not being able to distinguish between the parent
and the MHC (Foster, 2010). Children are not in
a place to seek information; rather, nurses must
offer and provide this information to children so
that they do not grow into adults with negative
memories about their experience.
Children Living With a Sibling With a Mental
Health Condition
Sibling relationships have a profound impact on the
development of a child. The sibling relationship
provides the connection for a child to learn how
to interact with others, manage quarrels, handle
rivalries, share secrets, and try on different roles
(Abrams, 2009). Siblings share a common genetic
and social background, early life experiences, and
a family cultural background that can last a lifetime
(Goetting, 1986). Brothers and sisters also share
unique private information about their parents
and families (Abrams, 2009). Goetting (1986) con-
tended that the common bond siblings experience
can be a source of support and companionship for
the sisters and brothers. But an MHC in one sib-
ling can interfere negatively with sibling relation-
ships. Some siblings experience guilt for not being
the brother or sister with the MHC. Abrams de-
scribed situations where brothers or sisters would
tell friends they were an only child or would refuse
to answer questions about the sibling with the
MHC because of the shame or guilt they felt to-
ward the sibling with the MHC. Unfortunately,
these kinds of actions often lead to more silence
and isolation for the unaffected sibling.
Sisters and brothers who have a sibling with a
SMI, such as schizophrenia or bipolar disorder,
often struggle to understand what has happened to
the affected sibling and the impact the condition
has on their relationship with their affected sibling,
as well as the entire family. For example, siblings
who observe an affected sibling experience his first
psychotic episode may feel haunted the rest of their
life. Unfortunately, too often siblings of individuals
with an SMI have their needs met by mental health
professionals at only the lowest level (Ostman,
Wallsten, & Kjellin, 2005). Yet, these siblings want
more help; for example, they want health profes-
sionals to be available to answer their questions and
to clarify their role in the future care of their sibling
(Friedrich, Lively, & Rubenstein, 2008). When
they get older, siblings may also have problems
developing and keeping intimate relationships
because they are fearful of passing on any genetic
deficiencies to their own children (Abrams, 2009).
Sibling participation in a support group specifi-
cally for siblings who have a brother or sister with
an MHC has been shown to decrease the siblings’
feelings of being alone, and helps them gain infor-
mation about their sibling’s MHC and learn ways to
support their affected sibling (Ewertzon, Cronqvist,
Lutzen, & Andershed, 2012). One study suggested
that the top-ranked coping strategies for supporting
siblings of persons with schizophrenia are education
about the illness, a supportive family, and having
their sibling suffer less because the symptoms are
controlled (Friedrich et al., 2008). Providing educa-
tion to siblings can clarify misperceptions about
the MHC and its treatment (O’Connell, 2006). Al-
though it is important to address the needs of the
brothers’ and sisters’ current experiences with their
affected brother or sister, nurses must also be future
oriented and provide education and support to these
siblings in preparation for becoming future primary
care providers to their sibling.
Nurses also need to be aware of other ways in
which the dynamic in the family might be problem-
atic when one sibling has an MHC and the other
does not. For example, parents may focus their
time and energy on the sibling with the MHC,
leaving the unaffected sibling feeling neglected and
resentful of the attention given to his sibling. It is
important that the needs of healthy siblings are not
ignored, no matter how unintentional the neglect
by parents may be. Nurses can work with parents
to help them shape how the unaffected sibling
perceives the affected sibling and the MHC, as well
as identify ways in which the parents can provide
the needed attention to healthy siblings. Family
assessment is critical, followed by appropriate psy-
choeducation, discussions about how parents might
relate to the unaffected sibling, and referral to
supports as needed.
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Parenting Children With a Mental
Health Condition
Parents provide care to children with an MHC on
a regular basis in what can often be a long-term,
ongoing activity; they frequently are the care
providers for their adult child with an MHC. Par-
ents often experience grief, isolation, and stigma
when their child has an MHC or blame themselves
for their child’s MHC. They may face health pro-
fessionals who are suspicious of parental involve-
ment and do not allow parent participation in the
care of the child, especially when the child is hos-
pitalized. In addition, grandparents are assuming a
caregiving role for their adult children who have an
MHC and also have children.
Grief and chronic sorrow are common experi-
ences that parents encounter after being told their
child has an MHC. Parent caregivers tend to expe-
rience more grief than sibling caregivers (Chen &
Lukens, 2011) and this grief can affect the parent’s
psychological well-being, health status, and the
parent-child relationship (Godress, Ozgul, Owen,
& Foley-Evans, 2005). The grief can be prolonged
as the parents may experience grief differently
across the life course of their child’s illness.
Chronic sorrow, pervasive sadness that is perma-
nent, periodic, and potentially progressive in nature
(Olshansky, 1962), also enhances parental grief.
Parents may experience grief for the loss of the
child that they can no longer have or may even feel
they have a different child from the one they
started with (O’Connell, 2006); parents grieve for
their future losses, for what their child may not be
able to accomplish. Some parents may feel the need
to provide regular care for their child well into
adulthood and, thus, they grieve not seeing their
children grow up into independent individuals.
They also may grieve losses in their own lives, such
as not becoming empty nesters.
Parents who have a more secure affection bond
and a more positive relationship with their child
may experience less grief than other parents (Go-
dress et al., 2005). On the other hand, parents who
have a more ambivalent and anxious relationship
with their child may experience more grief and
greater negative relationships with their affected
child. In one small study, parents of children diag-
nosed with either bipolar disorder or schizophrenia
reported experiencing chronic sorrow that was
often triggered by their unending responsibilities
to provide care to their child (Eakes, 1995). Nurses
need to recognize and validate the grief and sorrow
parents experience and provide interventions that
decrease their emotional distress and life disruption
(Godress et al., 2005).
Some parents of children with an MHC experi-
ence isolation and stigma from family, friends,
teachers, and school administrators. Many parents
are forced to leave work to meet with teachers or
administrators, which may cause them to lose their
jobs or change to a less demanding job, thus adding
further to the financial strain they may already be
experiencing (O’Connell, 2006). Many parents of
adult children with an SMI experience significant
frustration as they try to navigate a health care
system that they perceive as full of obstacles
(O’Connell, 2006).
Parents who have a child with bipolar disorder,
for instance, often blame themselves for their
child’s MHC, e.g., because of childhood adversity,
bad parenting, or substance misuse (Crowe et al.,
2011). Such parents may request family interven-
tions including psychoeducation, communication
enhancement, and problem-solving skills training
to help the family understand and manage the
disorder (Crowe et al., 2011; Nadkarni & Fristad,
2012). Nurses should offer such interventions even
if a family does not request them.
Parents want to be involved at an early stage in
the treatment of their child with an MHC and it is
important to them that their opinions and experi-
ences are heard (Nordby, Kjonsbert, & Hum-
melvoll, 2010). Yet, many health professionals are
suspicious of parental involvement and do not
allow parent participation in the care of the child
(Jakobsen & Severinsson, 2006). Although trust
and honesty are critical elements in relations be-
tween professionals and family, trust does not
develop naturally (Piippo & Aaltonen, 2004). Col-
laboration between health professionals, parents,
family members, and other disciplines enhances
trust among everyone involved.
Many parents experience the hospitalization of
their child with an MHC. Parents report that the
admission process can be very difficult for them
and that they often feel in crisis; they want nurses
and other health professionals to understand these
challenges (Scharer, 2002). They typically need
written and verbal information related to their
child’s care, such as an up-to-date handbook that
tells them who to call for information about their
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child, what to expect during the hospitalization,
hospital costs, what the child can or cannot do,
what they should be doing about school, and a
list of nearby inexpensive lodging during the hos-
pitalization, as well as easy access to the child and
better access to care before, during, and after hos-
pitalization (Scharer, 2002). Parents welcome prac-
tical tips and timely, accurate, situation-specific
information that is communicated to them in a
clear and honest manner (Eakes, 1995). In addition,
parents strongly suggest that they be recommended
to a parent support group and also be given a list
of parents who have undergone a similar experi-
ence and are willing to talk with them. Many par-
ents experience guilt and shame related to their
child’s hospitalization and find it helpful when
nurses talk to them about their guilt and shame in
a nonjudgmental manner.
Some parents whose child has an SMI and never
achieves independence may need to assume the
responsibility of caring for their grandchildren
(O’Connell, 2006). A small Canadian study (See-
man, 2009) described the role of the grandmother
as one with divided loyalties: the toll of providing
care to their grandchildren but also the rewards
that come with raising their grandchildren. In the
United States in 2008, 5.7 million children, 8% of
all children, lived with a grandparent. Mental dis-
orders in the parent of the child was one of the 11
reasons why the grandmother was raising the child
(U.S. Census Bureau, 2008). Caring for grandchil-
dren involves physical exertion and dedication over
time. If the grandparent is also caring for her adult
child with MHC, the physical and mental toll can
be overwhelming. A particularly vulnerable time
for the grandparent is when the grandchild ap-
proaches the age at which the child’s mother or
father began developing symptoms (Seeman,
2009). Nurses should be aware of such dates and
offer support to grandparents rather than waiting
for the grandparents to request help. Although
grandparents often provide the daily care for
their grandchildren, nurses must recognize that
typically it is the child’s parent who is recognized
as the legal guardian. This situation can present
problems for the grandparent and cause negative
caregiving experiences (Seeman, 2009). The grand-
parents may view the parent’s influence as not ben-
eficial to the child’s well-being and so they may
feel tempted to minimize visitations, though many
do try to sustain a relationship between the parent
and child. Grandparent caretakers sometimes are
put into adversarial conditions with the parent
and may even have to sue for custody of the child
(Seeman, 2009).
FAMILIES OF INDIVIDUALS
WITH A SPECIFIC MENTAL
HEALTH CONDITION
Several mental health conditions warrant specific
discussion in this chapter, either due to the stigma
associated with these disorders or the serious im-
pact these disorders can have on family function
and well-being. The following five disorders will
be discussed:
■ Schizophrenia
■ Bipolar disorder (BD)
■ Major depressive disorder (MDD)
■ Dementia
■ Attention-deficit hyperactivity disorder
(ADHD)
The diagnostic criteria for these disorders can
be found in the DSM-5 (APA, 2013). This section
will discuss the impact these specific disorders can
have on families and will include implications for
nursing practice. Note that substance abuse is
a common comorbidity with these conditions, so
it too needs assessment and intervention. The
Johnson family case study, later in the chapter,
discusses assessment and treatment for substance
abuse.
Schizophrenia, BD, and MDD should be consid-
ered potentially terminal illnesses for persons with
these disorders. It is estimated that around one-third
of people with schizophrenia attempt suicide and
up to 15% of those are successful (Caldwell &
Gottesman, 1990; Hawton, Sutton, Haw, Sinclair,
& Deeks, 2005; Lambert & Kinsley, 2005; Meltzer,
2005; Radomsky, Haas, Mann, & Sweeney, 1999).
Approximately two-thirds of people with MDD
consider suicide and about 10% to 15% of them
complete suicide (Sadock & Sadock, 2008). These
high rates of attempted and completed suicides are
cause for nurses consistently and diligently to assess
for suicidality/suicidal ideations in these populations.
Several suicide screening tools are available on the
Internet (e.g., http://www.integration.samhsa.gov/
clinical-practice/screening-tools), and the agencies
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where nurses work should have an identified suicide
assessment screening tool available.
Schizophrenia
Schizophrenia is a chronic condition of disturbed
thought processes, perceptions, and affect that can
lead to severe social and occupational dysfunction
and sometimes hospitalization. It has a life preva-
lence of 1% in Canada (Health Canada, 2002) and
the United States (NIMH, 2001), with equal dis-
tribution between women and men (Robins &
Regier, 1991) and typically affects someone for the
first time in his late teens to early twenties. Schiz-
ophrenia is a severe disorder characterized by dis-
torted thinking and perception and inappropriate
emotions. False, fixed beliefs not based on reality
(delusions), as well as hallucinations, social with-
drawal, and amotivation, are additional features of
this disorder that can cause significant individual
and family dysfunction. A person with schizophre-
nia may demonstrate disturbed behavior during
some phases of the disorder, which can lead to un-
favorable social consequences for the individual
and family.
There is complete symptomatic and social re-
covery in about 30% of persons with schizophre-
nia. Up to 80% of individuals with schizophrenia
may have a major depressive disorder at some time
in their life, which is conjectured to be linked with
the 20-fold increase in suicide over the general
public (Sadock & Sadock, 2008). Globally, schizo-
phrenia decreases the person’s lifespan by an av-
erage of 10 years (WHO, 2001a), with the most
frequent causes of premature death other than sui-
cide being heart disease, cerebrovascular disease,
and pulmonary disease (Colton & Manderscheid,
2006; Hennekens, Hennekens, Hollar, & Casey,
2005). People with schizophrenia also have a
higher mortality rate from accidents and natural
causes than the general population (WHO, 2001b).
Inpatient treatment for persons with an SMI
such as schizophrenia is more likely to be limited
to days rather than weeks or months (Gerson &
Rose, 2012). This approach means that treatment
and symptom management tend to occur in the
community. Some individuals with schizophrenia
live with their families, but many do not. Some live
on their own, others live with roommates or in a
group setting; still others are homeless. Because
they are adults who are considered competent
when their condition is at least fairly well managed,
it can be very challenging for families to help the
person obtain the care he or she needs, especially
if the person with schizophrenia is not managing
well and is refusing care.
Regardless of whether the person with schizo-
phrenia lives with the family or not, families need
help with understanding how to manage the situa-
tion. Individuals with schizophrenia and their
family members state that their greatest need from
mental health professionals is to receive more gen-
eral information about schizophrenia and guidance
on how to cope with the symptoms of schizo-
phrenia, including communication and social rela-
tionships (Gumus, 2008). Psychological distress
is a significant predictor of family functioning
(Saunders, 1999), and having a family member with
schizophrenia is a major stressor for the family
(Saunders & Byrne, 2002). Being informed and
knowing what to look for can help family members
recognize early signs of changes in the individual’s
symptoms and behaviors that may need profes-
sional involvement (Chen & Lukens, 2011); if
changes are addressed early, it is possible to avoid
hospitalization and reduce family stress. For exam-
ple, families need information about how to inter-
act safely with a family member who may be having
command hallucinations, especially if the halluci-
nation is commanding the individual to harm her-
self or others. Nurses need to inform family
members that it is not appropriate to argue or dis-
agree with the person who is actively hallucinating
or having a delusion. Rather, family members
should have a plan already in place to implement.
If there are children in the household, the behavior
the person is exhibiting may be frightening to
them. Children should have a safe, prearranged
place to go, such as a nearby neighbor, or have con-
tact information to call a trusted person to come
be with the child. Nurses should engage in open
discussions with family members about how to
interact with their family member who may be
hallucinating or having a delusional thought, prefer-
ably before the experience.
Families who have a family member with schiz-
ophrenia need nurses to understand the frustration
and exhaustion they frequently experience; they
also want to feel respected by health care profes-
sionals (Saunders & Byrne, 2002). On the other
hand, nurses need to remind family members to be
patient with the affected family member. Family
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members may be aware of the positive symptoms
(i.e., hallucinations and delusions) and negative
symptoms (i.e., anergy, amotivation, apathy, avoli-
tion) of schizophrenia. Still, many family members
complain that the person with schizophrenia is
lazy, manipulative, socially inept, or even incom-
petent, rather than realizing that these are mani-
festations of the illness (Muhlbauer, 2008). Even
though most individuals with schizophrenia do not
live with a family member, when the person who
has schizophrenia does live at home, the tasks that
family caregivers typically provide on a daily basis
are similar to those needed when anyone has an
MHC: providing companionship, providing emo-
tional support during a crisis, monitoring symp-
toms, assisting with personal grooming, and so on
(Decima Research Inc., 2004). The nature of this
condition can make it difficult for families to pro-
vide the care they perceive the person needs, espe-
cially when the medications are not effective (or the
person with schizophrenia has stopped taking
them). Nurses need to provide assistance to these
families in managing the individual’s illness, includ-
ing living arrangements, job placement, day-to-day
activities (Fortinash & Worrett, 2007), and med-
ications. The family’s coping ability and family
functioning are enhanced when appropriate social
support systems are in place, and such supports
can even buffer the family from the emotional
distress that can occur when providing care to
a family member with schizophrenia (Caqueo-
Urizar, Gutierrez-Maldonada, & Mirnada-Casatillo,
2009). Nurses need to remind families that there
are limits to what they can do for their family mem-
ber and refer families to appropriate resources and
support groups, including the National Alliance on
Mental Illness (NAMI).
Medication adherence is a major part of treat-
ment for managing the symptoms and behaviors of
schizophrenia, but compliance is variable and fre-
quently less than optimal. The side effects of med-
ications can lead the person with schizophrenia to
stop his medication, resulting in exacerbation of the
condition. It is important to engage the individual
and appropriate family members in administering
medications and in monitoring the effects and ef-
fectiveness of the medications (Fortinash & Wor-
rett, 2007). Many of the medications have serious
adverse effects. Neuroleptic malignant syndrome
(NMS) and extrapyramidal symptoms (EPS), in-
cluding akathisia and tardive dyskinesia (TD),
which affect the muscles, are serious and life-
threatening complications that can be caused by
typical and atypical antipsychotic medications. The
individual and appropriate family members need to
know what to do and who to call should they ob-
serve a dangerous or life-threatening side effect,
such as difficulty in swallowing or breathing, and
they should have the emergency information read-
ily available. Selective serotonin reuptake inhibitors
(SSRIs; e.g., sertraline and citalopram) can interact
with some antipsychotics and cause another signifi-
cant medical problem, metabolic syndrome, a term to
describe a group of risk factors (central obesity,
insulin resistance, elevated blood pressure, and
abnormal lipid profile) (Grundy et al., 2005) that
are thought to be highly predictive of risk for heart
disease. The atypical antipsychotics, such as
olanzapine and risperidone, that are used to treat
schizophrenia and other mood disorders, can lead
to metabolic syndrome. There is no treatment for
metabolic syndrome (Ganguli & Strassnig, 2011).
Rather, there are interventions to decrease the risk
of coronary heart disease, such as reduction of
weight, treatment of high blood pressure, and
treatment of elevated lipid levels (Ganguli &
Strassnig, 2011). In addition, interventions to pre-
vent metabolic syndrome, such as eating healthy
foods and participating in regular exercise, can help
to maintain a healthy body and decrease the risk for
developing metabolic syndrome.
Hospitalization is not uncommon, partly be-
cause of the challenges of noncompliance with
medication regimens, and it is a stressful time for
the individual and family. Family members often
do not understand the use and purpose of physical
restraints or seclusion and may need to be taught
this information by nurses in a nonjudgmental and
positive manner, making sure the family under-
stands the temporary use of these safety measures.
Related to issues of hospitalization is the topic of
involuntary commitment. Nurses need to be famil-
iar with their state/provincial involuntary commit-
ment statutes and inform families about what is
involved in these laws so that families and individ-
uals do not become overwhelmed or frustrated
should involuntary commitment occur. Involuntary
civil commitment means that an individual is ad-
mitted to a mental health unit against her will. The
three main reasons for involuntary commitment
are mental illness, substance addiction, and devel-
opmental disability. Being dangerous to oneself,
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including being unable to provide for one’s basic
needs, or to others usually defines the typical com-
mitment standard for mental illness. Most jurisdic-
tions provide for a hearing, the right to counsel,
and a periodic judicial review.
Despite the legal possibility of involuntary com-
mitment, many families experience stress because
of their frustration with a legal system that they
perceive as not taking their concerns seriously
(Saunders & Byrne, 2002). Families often feel pow-
erless to protect themselves or the individual with
schizophrenia from physical threats or violence at
a point early enough in time that no major harm
has yet occurred; rather than being able to prevent
harm, they feel that the involuntary commitment
laws require that they wait until the inevitable hap-
pens. Families also report that the legal system, in-
cluding the police, is not receptive to their input.
Further, families are often very concerned that
their family member with schizophrenia may not
receive treatment even when the individual is
demonstrating overt psychotic symptoms (Saunders
& Byrne, 2002).
Two final comments about schizophrenia are
worthy of consideration for nurses. First, persons
with schizophrenia should not be labeled or called
“schizophrenics” but rather identified by their
names. It is more professional and respectful and
less pejorative to identify the person by name and
not by illness. Second, the number of children born
to parents with schizophrenia has increased due to
improved medications and deinstitutionalization;
the fertility rate is close to that for the general
population (Sadock & Sadock, 2008). First-degree
biological relatives of persons with schizophrenia
have a greater than 10-fold risk for developing
schizophrenia compared with the general popula-
tion (Sadock & Sadock, 2008). The aforemen-
tioned statements have teaching and education
implications for nurses working with families who
have a family member with schizophrenia.
Major Depressive Disorder
Major depressive disorder (MDD), also called
major depression or clinical depression, is a medical
condition that causes a persistent feeling of sadness
and loss of interest; it affects how someone thinks,
feels, and behaves and it can lead to emotional and
physical problems. People with MDD often have
trouble doing normal day-to-day activities and they
may feel as if life is not worth living. MDD, a
chronic illness that usually requires long-term
treatment, affects 8% of Canadians (Health
Canada, 2002) and about 5% to 8% of Americans
(Kessler, Chiu, Demler, & Walters, 2005; NIMH,
2012). Worldwide, 6% of men and 10% of women
will experience a depressive episode serious enough
to receive psychiatric treatment (Smith, 2004).
Based on detailed interviews with over 89,000 peo-
ple from 18 countries, including the United States,
Bromet et al. (2011) illustrated that people from
high-income countries were more likely than those
from low-/middle-income countries to experience
depression over their lifetime (15% vs. 11%), with
5.5% having had depression in the last year.
Women were twice as likely as men to suffer de-
pression. The number of major depressive episodes
was higher in high-income countries (28% vs.
20%) and especially high (over 30%) in France, the
Netherlands, and the United States (Bromet et al.,
2011). MDD is the leading cause of disability in the
United States (WHO, 2008), the fourth leading
cause of burden among all diseases (WHO, 2001b),
and the 10th leading cause of death in the United
States (NIMH, 2012). In Canada, about one-fifth
of boys and one-third of girls (ages 11 to 15)
feel depressed or low on a weekly basis or more
(Freeman et al., 2011).
Sadock and Sadock (2008) asserted that the life
event most often associated with development of
depression is the loss of a parent before a child is
11 years old, and the environmental stressor most
associated with onset of a depressive episode is the
loss of a spouse. Nurses should assess for depres-
sion using a variety of evidence-based assessment
tools, such as the Patient Health Questionnaire–9
(Spitzer, Kroenke, & Williams, 1999), which is in
the public domain and available online. Adults
with depression experience the following: anhedo-
nia (the inability to experience pleasure from ac-
tivities normally found to be enjoyable), anxiety
(Sadock & Sadock, 2008), decreased energy, feel-
ings of guilt, and changes in appetite or sleep.
Depression often coexists with eating disorders or
anxiety disorders (Devane et al., 2005), as well as
substance abuse and alcohol/drug addictions
(Conway et al., 2006) and physical medical condi-
tions (Cassano & Fava, 2002). MDD interferes
with social, occupational, and interpersonal func-
tioning. Elderly persons may manifest depression
with somatic symptoms. Unfortunately, many
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health care professionals underdiagnose and under-
treat older persons with depression because they
assume that MDD is a natural part of aging—which
it is not.
MDD can jeopardize marriages and lead to mar-
ital discord. Over 50% of spouses report that they
would not have married their spouse or had chil-
dren had they known that their partner was going
to develop a mood disorder (Sadock & Sadock,
2008). Family and couples therapy are important
strategies to help families and they can be effective
in improving the psychological well-being of the
whole family.
Psychotherapy and psychopharmacology are
common treatments for persons with depression.
Selective serotonin reuptake inhibitors (SSRIs)
and serotonin-norepinephrine reuptake inhibitors
(SNRIs) are two common types of drugs used to
treat depression. Individuals who are prescribed
these medications and their families need to be
aware of a potentially life-threatening drug interac-
tion that can occur if inadvertently taken with other
drugs, or in the case of overdose: serotonin syn-
drome (SS). Serotonin is a chemical produced by
the body that allows nerve cells and the brain to
function. Too much serotonin may cause mild
symptoms such as shivering and diarrhea, but severe
SS may led to muscle rigidity, fever, and seizures,
which can be fatal if not treated. Herbs such as
St. John’s wort; stimulants, such as methylphenidate;
and opioids, such as hydrocodone, can interact to
produce SS. Families need to be educated about
the signs and symptoms of SS and receive informa-
tion on how to contact the health care provider or
emergency support services. Nurses should be
familiar with the classification of drugs that are
prescribed to their clients, such as SSRIs, SNRIs,
or norepinephrine-dopamine reuptake inhibitors
(NDRIs), as well as the neurotransmitters and parts
of the brain these drugs affect. Drugs are used
to treat symptoms and behaviors and not to treat
diagnoses. There are numerous psychopharmacol-
ogy textbooks, as well as many excellent online re-
sources, available for nurses to learn more about
these drugs.
Children and Depression
Depression is not always easily recognized in
children because many everyday stresses, such as
the birth of a sibling, can cause changes in a child’s
behavior. It is important to be able to tell the
difference between typical behavior changes and
those associated with more serious problems.
Symptoms of depression in children may be demon-
strated by excessive clinging to parents or by pho-
bias, and adolescents often exhibit poor academic
performance, substance abuse, antisocial behavior,
sexual promiscuity, or truancy, or they run away
(Sadock & Sadock, 2008). Other behaviors to pay
special attention to include problems across a vari-
ety of settings, such as at school, at home, or with
peers; changes in appetite or sleep; social with-
drawal; fear of things the child normally is not
afraid of; returning to behaviors more common in
younger children, such as bed-wetting, for a long
time; signs of being upset, such as sadness or tear-
fulness; signs of self-destructive behavior, such as
head-banging, or a tendency to get hurt often; and
repeated thoughts of death (NIMH, 2009).
Children who live with a parent who has MDD
are often aware of the parent’s depression and are
both emotionally affected and inappropriately in-
volved in managing everyday life, such as taking
over daily living or financial tasks that are normally
completed by an adult (Ahlstrom, Skarsater, &
Danielson, 2007). Even though children want to
help their parent, they do not feel capable, which
often can lead to feelings of guilt. Guilt is a feeling
that children living with a depressed parent expe-
rience more often than other children (Beardslee
et al., 1998). Some children worry that their de-
pressed parent may attempt or complete suicide
while they are away from home. It promotes chil-
dren’s health when the family as a whole learns
about depression and learns how to talk more
openly about it (Beardslee, Gladstone, Wright, &
Cooper, 2003). It is important for nurses to help
children understand that they did not cause the
parent’s depression and also to help the parents
convey this message to their children (Ahlstrom
et al., 2007). Nurses also need to include the family
in discussions. For example, a mother with MDD
who had two children (ages 19 and 11) stated that
she herself had received invaluable support and
help from her mental health professionals but that
this made no difference when the family members
were excluded (Ahlstrom et al., 2007). The 19-year-
old son thought that finances and untidiness were
the cause of his mother’s depression, while the
11-year-old daughter linked the depression to fam-
ily arguments that frightened her. The family
members reacted differently to depression. It is
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important for nurses to develop strategies that as-
sist all members of the family to participate actively
in the care of the parent with depression—the
child’s experience of living with a depressed parent
must be included in the overall treatment and man-
agement of the depressed parent. In addition, fam-
ily group cognitive-behavioral interventions that
focus on improving positive parenting (e.g., use of
praise, scheduling pleasant family activities) con-
tribute to the benefits for the children and the
family (Compas et al., 2010).
Bipolar Disorder
Bipolar disorder (BD) affects about 2.6% of adult
Americans in any given year (Kessler, Chiu, et al.,
2005) and worldwide the prevalence is around
0.4% (WHO, 2011). Bipolar I disorder, a subdi-
agnosis of BD that is characterized by one or
more manic episodes, is more common in di-
vorced and single persons than among married
people (Sadock & Sadock, 2008). BD is a recur-
ring, treatable but incurable MHC that causes cy-
cles of mania and depression. Episodes of mania
or depression can last from one day to months,
with euthymic (normal mood) periods between
these mood shifts. It is these dramatic shifts in
moods that can disrupt family function and cause
damage to relationships, academic problems, fi-
nancial problems due to loss of jobs, and even
legal problems, including confrontations with the
police. Family members can find it very difficult
to interact with a family member who is demon-
strating manic symptoms—euphoria, reduced
need for sleep, excessive talking, irritability, over-
activity, overconfidence, impaired concentration,
increased pleasure-seeking or risk-taking behav-
iors, and elevated surges of energy (NIMH, 2012;
WHO, 2011). Children especially can become
disturbed when living with a family member
who is manic. The child’s safety can be in jeop-
ardy and the child may feel afraid being near
someone who is behaving irrationally. On the
other hand, it can be equally disconcerting for
families to live with or provide care to someone
who is depressed and demonstrating hopeless-
ness, extreme sadness, and loss of energy (Kessler,
Berglund, et al., 2005).
Families with a member who has BD are con-
sistently challenged by the fickleness and unpre-
dictability that this MHC can have on the family
and the individual. They live with uncertainty, not
knowing which mood to expect at any given time
or when a change will occur. Parents of adult chil-
dren with BD have more compromised mental
and physical health and more difficulties in
marriage and work life than comparison families
(Aschbrenner, Greenberg, & Seltzer, 2009). Ad-
ditionally, parents who already have an MHC be-
fore the onset of their child’s BD are even more
vulnerable to problems with mental health issues,
psychological well-being, and work life than par-
ents who do not have an existing MHC (As-
chbrenner et al., 2009). Consequently, obtaining
the history of MHC in parents and the immediate
family is important to inform the nurse’s interven-
tions in promoting the well-being of each member
of the family.
Family history of BD conveys a greater risk for
BD disorders in general (Sadock & Sadock,
2008). Nurses need to teach families about the
genetic implications of this MHC and educate
families on the signs and symptoms so that fami-
lies can recognize the early signs and symptoms
and initiate early professional treatment. BD
is a difficult MHC to diagnose accurately, yet it
is important that this MHC be differentiated
from MDD, personality disorders, substance
use, anxiety disorders, and schizophrenia (Sadock
& Sadock, 2008) because the treatments can be
significantly different. Although BD typically
emerges in young adulthood, the range of onset
of BD can occur as early as 5 to 6 years of age to
50 years of age or older.
Because children and adolescents can manifest
symptoms of mania and depression differently
from adults, they are often misdiagnosed as
having antisocial personality disorder or schizo-
phrenia rather than BD (Sadock & Sadock, 2008).
Child and adolescent symptoms of mania can
include substance abuse, irritability that can lead
to fights, academic problems, suicide attempts,
obsessive-compulsive symptoms, somatic com-
plaints, and antisocial behaviors. Misdiagnosis
has tremendous implications in young people.
Making differential diagnoses in children and
adolescents is difficult, and it is important for
nurses to advocate for additional assessments as
new signs and symptoms emerge in children and
adolescents so that they are treated appropriately
and so that they can avoid unnecessary treatments
and complications.
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Just as misdiagnosis of BD in the younger pop-
ulation is problematic, it is also problematic for the
older population. Older adults with BD are more
often misdiagnosed as having schizophrenia, with
older minority persons being misdiagnosed twice
as frequently as white older persons or younger
minorities (Luggen, 2005). Elderly persons are also
more likely to be diagnosed with depression rather
than BD, which can result in antidepressant med-
ications inadvertently placing these older persons
at higher risk for having a manic episode (Luggen,
2005). Equally important, many of the medications
that are used to treat symptoms of depression and
mania can have significant adverse effects on the
older person, thus making it even more important
for accurate assessment and treatment among this
vulnerable population. Some of the medications
used to treat these symptoms, such as the second-
generation antipsychotic drugs, may place an older
person at higher risk for death or cerebrovascular
event (Stahl, 2011).
Mental health professionals have typically
done a less than adequate job in assessing the
needs of spouses who have a family member with
BD and in providing information to these spouses
(van der Voort, Goossens, & van der Bijl, 2009).
Yet, it has been shown that care providers who
receive both psychoeducation and health promo-
tion interventions have significantly less depres-
sion, improved health, and less subjective burden
of care and role dysfunction (Perlick et al., 2010).
Not only might the care providers receive benefit
from these two interventions, but the family
member with BD may demonstrate a decrease
in mania and depression, due in part to the im-
proved health of the provider of care (Perlick
et al., 2010).
Caregivers of persons with BD often have felt
overlooked by health professionals and they report
that if professionals would offer support, it would
decrease their burden of care (Rusner, Carlsson,
Brunt, & Nystrom, 2012; Tranvag & Kristof-
fersen, 2008). Caregivers who provide care to a
family member with BD identified two main
themes that would make their caregiving experi-
ences more positive (Maskill, Crowe, Luty, &
Joyce, 2010). First, they would feel more sup-
ported if the mental health nurses showed under-
standing of the complexities associated with BD
and were nonjudgmental and noncritical of the
family. Second, they identified the importance of
care providers collaborating with mental health
staff. Professionals should recognize the unique-
ness of the care provider and the recipient of the
care. Care providers also encourage mental health
staff to be honest with them about the fact that BD
is not curable, but to maintain hope nonetheless
(Maskill et al., 2010).
Although BD is treatable, the condition can
cause significant social and economic stress for
families. Educational interventions for family
members living with a person with BD reduce
stress for the family members, increase family
members’ understanding of the condition, and
enhance family members’ ability to remain so-
cially functional (Jonnson, Wijk, Danielson, &
Skarsater, 2011). It is essential that nurses teach
family members to observe for early signs of re-
lapse into mania, such as provocative dressing,
unrestrained buying sprees, hypersexuality, being
more talkative than usual, or grandiosity (APA,
2013); or signs of relapse into depression, such as
increased sleeping, problems sleeping, problems
with concentration, anhedonia, or recurrent
thoughts of suicide. It is important that family
members monitor these changes in their family
member who has BD (Sorell, 2011) and notify the
appropriate health care professional when there
are changes.
Dementia
Dementia is a syndrome that affects memory,
thinking, behavior, learning capacity, judgment,
and the ability to perform daily activities; it is
one of the major causes of disability and depend-
ency among older people worldwide (WHO &
Alzheimer’s Disease International, 2012). Globally,
approximately 35.6 million people have dementia
and these numbers are expected to double by 2030
and more than triple by 2050 as the population ages
(WHO & Alzheimer’s Disease International,
2012). In the United States, about 5% of the gen-
eral population over age 65, and 20% to 40% over
age 85, has dementia. Alzheimer’s disease is the
most common type of dementia (approximately
60% to 70% of dementia cases). People can live
for many years with dementia and, thus, with
appropriate support many can remain engaged in
and contribute to society. There is currently no
cure or treatment to alter the progressive nature of
the condition.
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Dementia can dramatically affect the lives of in-
dividuals with dementia and their families, not only
health-wise, but also economically, socially, and
legally. Providing care to a family member with
dementia can interrupt the normal family activities.
Depending on the severity of the dementia, fami-
lies may need to take on responsibility for tasks
ranging from paying bills to ensuring the individual
attends medical appointments to full personal
grooming. Discussions about power of attorney
and substitute decision making (living wills) need
to take place, preferably soon after diagnosis.
The majority of care to persons with dementia
is provided by family and informal community sup-
port services, though some individuals receive
long-term, institutional care. Women typically
provide family home-based care to persons with
dementia. Emotional and physical stressors are not
uncommon among caregivers. The loss of the abil-
ity to interact meaningfully with a loved one who
no longer, or perhaps intermittently, remembers
you is a source of grief and stress for many families.
Caregivers have a very high prevalence of depres-
sion (Cuijpers, 2005) and may have a compromised
immune system (Vitaliano, Zhang, & Scanlan,
2003). Psychoeducation programs have been shown
to decrease depression and stress among caregivers
(Gallagher-Thompson et al., 2012) and are one
source of support that nurses can help families
obtain. These caregivers need strong support from
health professionals; assessment and intervention
are critical. More detailed information about de-
mentia assessment and intervention is available in
Chapter 15.
Despite the commonly held societal belief, de-
mentia is not a normal part of the aging process;
dementia is much more than slight memory loss.
A family’s cultural-based beliefs about dementia
can be a barrier to accessing care (Gallagher-
Thompson et al., 2012). For instance, families can
view dementia as a medical illness, a mental illness,
or as part of normal aging. When conducting a
family assessment, the nurse should explore each of
these views. In addition, it is important that the
nurse listen to each member of the family’s story.
These stories can be used to map the journey of the
person with dementia and the family’s journey as it
lives this experience (Doherty, Benbow, Craig, &
Smith, 2009). Other sources, such as extended fam-
ily members, other informal caregivers, health care
records, and formal health care providers should
also be used to obtain information. Information
collected from a variety of sources can be used to
develop effective family-focused interventions.
Although the family member with dementia may
have increased confusion and decreased ability to
communicate, it is important that nurses not treat
this person as a child. The person with dementia is
an adult and should still be treated with respect as
an adult. Speaking to an adult as if she were a young
child is demeaning to the individual and to the fam-
ily members. There may be some similarities be-
tween a young child and an older person with
dementia, such as incontinence or inability to dress
oneself. Nevertheless, the adult should be treated as
an adult who has a cognitive deficit and not as a
child. For example, it is important to use normal
conversational pitch and words when talking to an
older adult, rather than affecting a high-pitched
voice or using words that are appropriate to a child’s
developmental level rather than that of an adult.
New technologies are being used to assist family
caregivers who are caring for persons with demen-
tia. Telehealth, for instance, allows family members
to communicate with their health care profession-
als via the Internet, and Smart Phones and new ap-
plications provide information to family members
about dementia, caring for a person with dementia,
and support sources for the family. These tech-
nologies can be used to inform families on how to
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handle daily problems, such as wandering, falling,
decreased memory, and eating problems (Gallagher-
Thompson et al., 2012). A new multidisciplinary
field—gerontechnology—has developed to inter-
face between technology and older people. The
mission of the International Society for Gerontech-
nology (IGS) is to “encourage and promote tech-
nological innovations in products and services that
address older peoples’ ambitions and needs on the
basis of scientific knowledge about ageing processes
including cultural and individual differences”
(http://www.gerontechnology.info/index.php/
journal/pages/view/isghome). The IGS values not
only meeting the needs of older people, but also
supporting the caregivers. Developments such as
gerontechnology offer exciting possibilities about
how to provide needed support to caregivers of
persons with dementia.
Attention-Deficit Hyperactivity Disorder
(ADHD)
ADHD is one of the most common MHCs among
children and adolescents (Foley, 2010), with more
prevalence in boys ranging from 2:1 to as much
as 9:1 (Sadock & Sadock, 2008). The underrepre-
sentation of girls may be attributed to underdiag-
nosis, however, because girls often present with the
inattentive rather than hyperactive type of ADHD
and are overlooked. In the United States, the pres-
ence of ADHD varies from 2% to 20% among
grade-school children and the incidence of the
symptoms of ADHD persisting into adulthood is
about 40% to 50% or 4% of the adult population
(Sadock & Sadock, 2008). Children, adolescents,
and adults with ADHD typically demonstrate di-
minished sustained concentration, increased levels
of impulsivity, hyperactivity, and problems with
social interactions. Other people may view them as
lazy, stupid, reckless, or uncaring because of how
the symptoms affect the person with ADHD. Some
children, especially girls, may be inattentive rather
than hyperactive, and the hyperactivity in adults is
often internal rather than external. ADHD has a
genetic component (Foley, 2010) and so it is not
uncommon to have more than one family member
with ADHD, including one or both parents (Singh
et al., 2010). Diagnosis is complex and requires col-
laborating with many key adults in the child’s life,
including teachers, parents, friends, and other com-
munity adults with whom the child may interact.
Diagnosis in adults often follows a diagnosis for
one of their children.
Young people who are diagnosed with ADHD
often endure stigma from their peers, teachers,
family, and society. Examples of stigma include
teachers and peers thinking that a person with
ADHD chooses to be inattentive in class or that the
person with ADHD has a character trait flaw rather
than an MHC. Many young people struggle with
the negative assumptions that others have toward
them and that they have toward themselves (Kildea,
John, & Davies, 2011). They often experience a
lack of empathy and understanding from key adults
in their lives (Singh et al., 2010). Young people
with ADHD frequently feel that the diagnosis itself
gives them a bad reputation, including thinking
that others consider them stupid (Singh et al., 2010).
Parents of children with ADHD often report
feeling blamed by professionals, their families, and
society for their child’s behavior (Kildea et al.,
2011). Families of children with ADHD have a
higher level of dysfunction than other families;
thus, earlier identification and intervention with
these families can result in healthier family function
and child outcomes (Foley, 2010). For instance,
families who received eight to twelve 50-minute
sessions that included psychoeducation about
ADHD, behavioral principles, and specific parent-
ing skills and strategies demonstrated improved
parenting behaviors and less parenting stress for
mothers (Gerdes, Haack, & Schneider, 2012). Ex-
amples of parenting skills and strategies include
having regular and consistent daily routines, such
as mealtimes (Tamm, Holden, Nakonezny, Swart,
& Hughes, 2012), praising positive behavior, ig-
noring mildly negative behavior, consistently using
time out, and giving effective instructions (Gerdes
et al., 2012). It is also recommended that families
eliminate computer/screen time before bed to de-
crease sleep problems (Becker, Goobic, & Thomas,
2009). Parenting skills should include supervision
and provision of assistance to the child so he can
remain organized and focused when doing home-
work; short movement breaks at regular intervals
also are helpful (Becker et al., 2009).
Although it is very beneficial for parents to learn
about and use home management skills, it is also
important that the parents request appropriate
neuropsychological and psychoeducational evalua-
tions for their child to determine if the child might
benefit from school-based supports, particularly if
Family Mental Health Nursing 541
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their child has academic difficulties, a learning dis-
order, or executive functioning difficulties (Becker
et al., 2009). For example, in the United States
some children with ADHD qualify through a fed-
eral law, the Individuals with Disabilities Act, to
receive an Individual Educational Plan (IEP) that
is unique to the child and supports the child’s
educational needs. Another plan, the 504 Plan, is
provided by a civil rights law that protects children
with ADHD from being discriminated against
because of their MHC and so some children who
may not qualify for an IEP may receive additional
educational support under the 504 Plan. IEPs are
also common in Canada after appropriate assess-
ment and evaluation.
Treatment for ADHD may include medications,
psychotherapy such as behavioral therapy, psychoe-
ducation including lifestyle changes, coaching, and
other interventions to decrease the number and
severity of stressors in the individual’s and family’s
life. Family therapy will help to maintain and pro-
mote healthy family functioning. Family therapy is
also indicated if the condition jeopardizes the mar-
riage, for example, if a spouse whose partner has
ADHD is considering leaving the marriage (Sadock
& Sadock, 2008). Family therapy is especially rec-
ommended if a child and a parent have ADHD, be-
cause it may be difficult for a parent to recognize her
own disorganization, inconsistent responses to the
child’s behaviors, and/or impulsivities and the im-
pact they can have on the family (Singh et al., 2010).
Medications are used to treat ADHD, in con-
junction with other interventions, but the decision
to use these medications needs to be based on the
benefits of taking the medication versus the conse-
quences of not taking the medications. The parent
or adult needs to make these decisions without out-
side pressure from family or media who may be
misinformed. Parents of children with ADHD
often experience misgivings about administering a
stimulant to their child, based on feedback they get
from their family, friends, or the media (Jackson &
Peters, 2008) even though stimulants are the rec-
ommended treatment. Much of the information
parents obtain about treating ADHD with medica-
tions is secondary and not evidence based. Nurses
have a responsibility to provide accurate informa-
tion to parents so the parents can make a thought-
ful and informed decision about whether or not to
treat their child with medication. Amphetamine-
containing formulations of stimulants are the most
commonly prescribed ADHD medications in
Canada and the United States (Berman, Kuczenski,
McCracken, & London, 2009). Though stimulants
have been used successfully for decades, there has
been a link to slower bone growth in children
taking amphetamines and to psychosis in adults
taking amphetamines (Berman et al., 2009). The
child and adult prescribed a stimulant require reg-
ular checkups. Just as many clinical settings contact
patients for follow-up visits, such as for diabetes
management, these settings should likewise desig-
nate a nurse to be the point person to provide this
service to persons with ADHD and their families
(Van Cleave & Leslie, 2008).
Medication adherence and behavior modifica-
tion can be problematic for individuals with ADHD
and their families. It has been suggested that pro-
fessionals approach ADHD as a chronic health
condition, which includes long-term therapy (Van
Cleave & Leslie, 2008). Nurses should educate
families that medication neither cures ADHD nor
necessarily eliminates the impulsive behaviors a
child or adult may be exhibiting. Families should
be aware of the advantages and disadvantages of
taking medication several times during the day
versus taking a long-acting stimulant.
ROLE OF THE FAMILY MENTAL
HEALTH NURSE
In order to establish a collaborative relationship
with the family, nurses must have a nonblaming
and accepting attitude toward family members
(Doornbos, 2001). Families value interactions with
health providers that demonstrate openness, coop-
eration, confirmation, and continuity (Ewertzon
et al., 2012). As family members increasingly have
assumed the role of primary caregivers for mentally
ill individuals, it is more important than ever to
include them as partners in the delivery of mental
health care. Care delivery systems that involve fam-
ily members acknowledge the effect mental disor-
ders have on entire family systems. They seek to
prevent the return or exacerbation of a disorder,
and they alleviate pain and suffering experienced
by family members. To fulfill these goals, re-
searchers (Dixon et al., 2001) have identified 15
evidence-based principles that can be incorporated
into family nursing interventions for families of
individuals with a mental illness (Box 16-2). This
542 Nursing Care of Families in Clinical Areas
3921_Ch16_521-558 05/06/14 11:19 AM Page 542
section briefly examines a few areas of focus for
mental health nurses within care delivery systems:
prevention of MHCs, psychoeducation, crisis plans,
and providing culturally sensitive care.
Prevention of Mental Health Conditions
Arguably, the most important role for the nurse in
mental health care is to engage in professional ac-
tivities that prevent mental health conditions. Stress
during childhood, especially before 3 years of age
when synapses are still being formed, can trigger
the expression of genes that may otherwise have re-
mained unexpressed (Grayson, 2006). Neglect and
abuse are negative experiences that can cause seri-
ous hormonal and chemical changes in the brain
and interrupt normal brain development (Grayson,
2006). The “physical connections between neu-
rons formed in childhood are not ‘hard-wired’ or
‘unchangeable’” (Grayson, 2006, p. 1). It has been
suggested that stress can trigger changes to alter a
child’s brain development (Teicher, 2002). Genet-
ics influence brain development and yet stress, such
as physical, emotional, and sexual abuse; famine;
and natural disasters profoundly affect the emo-
tional, behavioral, cognitive, social, and physical
functioning in children (Perry, Pollard, Blakley,
Baker, & Vigilante, 1995). Secure attachments and
ample nurturing not only allow for a positive envi-
ronment for the brain to build neural connections
to integrate the brain systems but also strengthen
an infant’s ability to cope with stress (Grayson,
2006). When babies cry and their needs are taken
care of, such as through food or attention and com-
fort, their neuronal pathways are strengthened and
they learn how to get their needs met both physi-
cally and emotionally (Grayson, 2006). On the
other hand, babies who are abused or neglected
learn other lessons that can be damaging and may
interfere with a child’s ability to self-regulate. For
instance, the child whose needs are not met and
who endures repeated painful disappointments may
abandon crying for help, resulting in problems with
hyperarousal or dissociation.
Teicher (2002) conjectured that maltreatment at
an early age can have enduring effects on the de-
velopment and function of a child’s brain. Child
maltreatment can manifest internally—depression,
anxiety, or suicidality—or outwardly, with aggres-
sion, impulsiveness, hyperactivity, delinquency, or
substance abuse. He further conjectured that there
is a strong association between maltreatment in
childhood and a person being diagnosed with bor-
derline personality disorder. Borderline personality
disorder is characterized by seeing others and situ-
ations in black-and-white terms, having unstable
relationships, having feelings of abandonment, ex-
hibiting self-harm, having problems with anger,
and escaping through substance abuse. The limbic
system plays a key role in regulating emotion and
memory of one’s experiences. Research has shown
that abuse in children can cause permanent damage
to the neural structure and function of the brain.
People with borderline personality disorder often
have reduced integration between the left and right
brain hemispheres, a smaller corpus callosum, and
limbic electrical irritability.
There is also some evidence that a mother smok-
ing and drinking alcohol during pregnancy affects
the growth of neural pathways and can contribute to
Family Mental Health Nursing 543
BOX 16-2
Evidence-Based Principles for Working With
Families of Individuals With a Mental Illness
■ Organize care so that everyone involved is working to-
ward the same treatment goals within a collaborative,
supportive relationship.
■ Attend to both the social and clinical needs of the
primary patient.
■ Provide optimal medication management.
■ Listen to family’s concerns and involve them in all
elements of treatment.
■ Examine family’s expectations of treatment and
expectations of the primary patient.
■ Evaluate strengths and limitations of family’s ability to
provide support.
■ Aid in the resolution of family conflict.
■ Explore feelings of loss for all parties.
■ Provide pertinent information to patients and families
at appropriate times.
■ Develop a clear crisis plan.
■ Help enhance family communication.
■ Train families in problem-solving techniques.
■ Promote expansion of the family’s social support
network.
■ Be adaptable in meeting the family’s needs.
■ Provide easy access to another professional if current
work with the family ceases.
Adapted from Dixon, L., McFarlane, W., Lefley, H., Lucksted, A.,
Cohen, M., Falloon, I., . . . Sondheimer, D. (2001). Evidence-
based practices for services to families of people with psychi-
atric disabilities. Psychiatric Services, 52(7), 903–910.
3921_Ch16_521-558 05/06/14 11:19 AM Page 543
the development of conditions such as ADHD
(Nigg, 2006). Healthy lifestyle behaviors, including
diet, exercise, stress-reduction strategies, and non-
consumption of alcohol, cigarettes, or illegal sub-
stances seem to play a role in reducing the risk of
developing an MHC. Nurses should put effort into
encouraging and supporting healthy lifestyles,
whether prenatally or for children, youth, or adults.
Nurses must, of course, advocate for good par-
enting and must offer parenting support in a non-
judgmental way. Nurses should be at the forefront
of ensuring that childhood maltreatment does not
take place. Nurses can provide resources for care-
takers of children so they learn the necessary skills
to provide responsible care, support, and nurturing
to their child. Moreover, nurses should be active
in local, state, and national policies that affect
child welfare. “Early assessment and intervention
can be prophylactic—helping prevent a prolonged
acute neurophysiological, neuroendocrine, and
neuropsychological trauma response” (Perry et al.,
1995, p. 291).
Psychoeducation
A major role for a professional nurse in working
with families who have a member with an MHC is
to provide psychoeducation. Psychoeducation in-
cludes teaching clients about the cause and treat-
ments of the MHC, while being attuned to each of
the family members’ unique needs. Family psy-
choeducation is a term used to describe various
family programs that incorporate the following
three elements:
■ Family education
■ Training in coping skills
■ Social support (Schock & Gavazzi, 2005)
The time commitment and emphasis on each
of these elements is what differs among the
diverse psychoeducational models. Currently,
these interventions may continue for months or
years. Because psychoeducational programs are
multifaceted and involve such long-term relation-
ships, they are typically delivered by teams of
professionals working together (Marsh & Johnson,
1997). Nurses’ training and education make them
well suited to participate in such interdisciplinary
teams that emphasize client and family education,
enhance coping skills, and develop supportive
networks.
The educational element of these programs in-
volves providing information to relatives regard-
ing diagnoses, cause of mental illness, prognosis,
and treatment. Skills training may include coping
skills for family members and social skills training
for the family member with the MHC. In addi-
tion, the entire family may work on developing
communication skills so members can communi-
cate more effectively with one another. Nurses
can enhance social support for the family by
actively including relatives as members of the
treatment team and by helping to establish con-
nections to other families with similar experi-
ences. Through networking with one another,
families can find support and share problem-
solving strategies. A local chapter of the NAMI
is one support and advocacy organization that
families may find helpful.
Nurses can teach individuals and family mem-
bers about no-cost relaxation techniques to reduce
stress (e.g., breathing techniques and exercises,
guided imagery, yoga, and progressive muscle re-
laxation) and provide pet and/or music therapy.
Nurses have the skills to help families cope with
feelings of anger and disappointment as they go
through the grief process after learning about the
MHC of one of their family members. It is impor-
tant to realize that it may take time for families to
accept the diagnosis and the level of acceptance will
vary between members of the family (O’Connell,
2006). A variety of family intervention strategies
are outlined in Box 16-3.
Crisis Plans
Nurses are integral in assisting families to develop
a crisis plan that is put in place before the need for
such a plan; it is more challenging to manage a cri-
sis when you do not have a predetermined plan to
follow. Part of this plan may include a visit to the
local police precinct to ascertain the best way to
deescalate a violent situation (Nadkarni & Fristad,
2012). Nurses should suggest that families have
a binder/notebook available with the following
information:
■ A list of health care providers, emergency
professional contact names, and telephone
numbers
■ Suicide hotline telephone numbers
■ Insurance information
544 Nursing Care of Families in Clinical Areas
3921_Ch16_521-558 05/06/14 11:19 AM Page 544
■ Details about the best route to the appropriate
emergency department or health care facility,
including specific directions to get to the sites
■ Safe locations where children or other mem-
bers of the family can go during escalation
times
This binder should be readily available to fam-
ily members and needs to be updated regularly
(Nadkarni & Fristad, 2012). Also included in this
binder should be advance agreements set up with
the person who has an MHC when she was well;
these agreements should specify the individual’s
preferred treatment and note with whom infor-
mation can be shared during periods of exacerba-
tion of the MHC (Gray, Robinson, Seddon, &
Roberts, 2008).
Providing Culturally Competent Care
Nurses must remember that cultural norms and be-
liefs shape family members’ perceptions of coping
and managing care for relatives with an MHC
(Dalky, 2012). NAMI’s informative Web site
(NAMI, n.d.) includes mental health fact sheets
for different ethnic groups in the United States
(African American, American Indian and Alaska
Native, Asian American and Pacific Islander,
Latino/Hispanic). Nurses are encouraged to review
these fact sheets to become more informed about
facts that will help them in practice, and so they
can decrease myths and stereotypes about different
ethnic groups. For example, American Indian and
Alaska Native languages do not include the words
“depression” and “anxious,” nor does the word “de-
pression” exist in some Chinese languages. Soma-
tization of mental health conditions is more common
in African American and Asian cultures than in
Caucasian counterparts.
NAMI also has fact sheets about depression
among the following groups: veterans, lesbian/gay/
bisexual/transgendered, seniors, women, men, and
children/adolescents. Misdiagnosis and undertreat-
ment are not uncommon among some cultural
groups; improved understanding about various
cultural groups will enhance nursing practice. In
addition, because psychiatric medications are a
significant part of treating MHC, it is important
for nurses to know which populations may be
fast metabolizers and which might be slow me-
tabolizers in order to avoid overmedicating or
undermedicating a specific individual. At the
same time, it is important not to stereotype
individuals or families based on their cultural
identity but rather to use cultural identity as
one aspect of the nursing assessment to take into
consideration when developing a nursing plan for
the entire family.
Family Case Study: Johnson
Family
The following case study of the Johnson family demon-
strates the assessment, diagnosis, outcome identification,
planning, implementation, and evaluation for care of a fam-
ily with a member who has been diagnosed with bipolar
disorder and substance abuse.
Setting: Inpatient acute care hospital, cardiac intensive
care unit (ICU).
Family Mental Health Nursing 545
BOX 16-3
Family Intervention Strategies
■ Coordinate information and treatment plans across
settings and with multiple health care providers.
■ Ensure that communication is bidirectional from health
care providers to families and from families to health
care providers.
■ Provide validation for commitment and work being
done by all family members.
■ Create ways for families to manage treatment plans
that affect everyday routines.
■ Identify realistic ways that the mentally ill family mem-
ber can participate in and contribute to the family.
■ Articulate an action plan to implement during times
of crisis.
■ Negotiate ways to manage specific problem behaviors.
■ Connect with appropriate social resources (individual/
group therapy, support groups, extended family, friends,
religious organizations).
■ Provide diagnostic and treatment-related family
psychoeducation.
■ Encourage self-care behaviors for all family members.
■ Identify effective coping skills for individual family
members.
■ Advocate for policy changes that benefit individuals with
mental health conditions and their family members.
■ Challenge detrimental stereotypes and stigma of per-
sons with a mental health condition and their families.
(continued)
3921_Ch16_521-558 05/06/14 11:19 AM Page 545
Nursing Goal: Work with the family to assist them in
planning for discharge in the next 3 days to a less intensive
care facility.
Family Members:
• Steve: father, 55 years old, small business owner
• Mary: mother, 49 years old, stay-at-home mother
• Debbie: stepmother, 54 years old, schoolteacher
• Harold: stepfather, 60 years old, successful building
contractor
• Tony: identified patient, 23 years old, oldest child, son,
unemployed, sleeping on couches of friends
• Susie: younger daughter, Tony’s sister, 14 years old,
eighth grader, overachiever and “perfect” child
• Bobby: Tony’s half-brother, mother’s son, 12 years old
• Rachael: stepmother’s daughter from previous marriage,
30 years old
• Thomas: Mary’s father, 86 years old, wealthy businessman
• Emma: Mary’s mother, 85 years old, abuses alcohol
Johnson Family Story:
Tony Johnson is a 23-year-old man who was admitted to
the hospital cardiac ICU through the emergency department
in acute cardiac distress from an accidental methampheta-
mine overdose. He arrived at the emergency department
by ambulance from his drug-free friend Doug’s single-room
occupancy hotel room. Tony is currently homeless. He had
been sleeping on his drug dealer’s couch for a week until
he was arrested for assault. Since his arrest a few days ago,
he has been sleeping on Doug’s floor.
Tony has been in and out of substance abuse treatment
programs since he was 17 years old. He was diagnosed
with bipolar disorder at the first treatment program he at-
tended. His father and stepmother convinced him to enter
that program just before his 18th birthday and paid for the
expensive 3-month program. As with all of the programs he
has attended, he left soon after admission to the program.
During a previous emergency department admission,
Tony got angry at his family, tore off his electrocardiogram
leads and oxygen mask, and left the hospital against medical
advice. During the present hospitalization, Tony called his
father from the emergency department to ask him to come
and help get him admitted to another treatment facility. Tony
has agreed to see his sister and stepmother, but not his
stepfather or stepsiblings. He also refuses to see his mother
because he says she “is the cause of all my problems.” His
mother and father separated, and later divorced, when Tony
was 10 years old and his younger sister was about 1. He
and his mother fought constantly when he was a child, and
she was overprotective of him. Tony was an obedient child
who then began using alcohol and drugs and stealing from
family members beginning in his early teens.
Tony’s father has maintained Tony on his small business’s
health insurance policy. Tony is eligible for short-term residen-
tial treatment if he can prove to the director of the program
that he intends to cooperate this time. His father is again
willing to pay for longer-term drug and psychiatric treatment
if Tony proves that he is intent on cooperating with his treat-
ment plan.
Tony stopped taking his mood-stabilizing medications
approximately 2 weeks ago, when his most recent binge
use of methamphetamine started. Currently, the doctors are
reluctant to prescribe his mood-stabilizing medications while
the methamphetamine is still affecting his major systems.
Family Members:
The admitting nurse and the ICU social worker have gleaned
the following familial information from Steve, Mary, and Debbie.
The Johnson family genogram is illustrated in Figure 16-1.
The Johnson family ecomap is illustrated in Figure 16-2.
Steve is very concerned about his son’s health and re-
minds him that the doctors have said he will not survive an-
other year if he continues to use methamphetamines. Steve
recognizes his son’s depression and anger and feels guilty
that he did not notice sooner that Tony was depressed and
“self-medicating” with alcohol and drugs. He blames himself
for the divorce, which he believes precipitated Tony’s alcohol
and drug abuse. He also regrets his workaholism during
Tony’s early years and for being a co-dependent, allowing
Tony to live at Steve’s home when Tony was drinking and
using drugs to excess, and sleeping round the clock between
drug-induced manic episodes. Steve initiated the divorce
when he discovered his ex-wife was having affairs and using
cocaine. Steve was diagnosed at the time of the divorce as
having bipolar disorder, with a manic episode that resulted
in his hospitalization. He is maintained on medications and
has had no further episodes.
Mary, Tony’s mother, became a stay-at-home mom
when she gave birth to Tony. She was overprotective with
him but secretly resented that he was not a good student.
She punished him severely for his learning difficulties, es-
pecially when she was drinking. Her closet drinking became
cocaine use after Tony’s sister Susie was born, when Tony
was 9 years old. Tony both resented his sister for taking his
mother’s attention away from him and was relieved not to
be the sole focus of her anger. Mary is currently recovering
from drug abuse but drinks wine still, even drinking with
Tony when they are speaking to one another.
Debbie, Tony’s stepmother, met Tony’s father about a
year after his divorce. Tony was living with his father at the
time and refused to accept his stepmother as a mother
figure for him for several years. Debbie is a better limit-setter
than Steve and is often more practical about recognizing and
546 Nursing Care of Families in Clinical Areas
3921_Ch16_521-558 05/06/14 11:19 AM Page 546
Family Mental Health Nursing 547
Steve
55 yr
Harold
60 yr
In CCU
Methamphetamine overdose
Homeless
Bipolar
Overachiever “Spoiled”
Tony
23 yr
Bobby
12 yr
Rachael
30 yr
Susie
14 yr
D 1995Bipolar
Cocaine
Closet alcoholicTeacher Successful
Building contractor
Father figure
Mary
49 yr
Debbie
54 yr
Frances
90 yrRobert
Emma
85 yr
Closet
alcoholic
Thomas
86 yr
FIGURE 16-1 Johnson family genogram.
was a stay-at-home wife and mother; she is a drinking al-
coholic who fairly successfully hides her alcoholism except
on family occasions when she often makes a scene.
Discharge Plans:
Tony will be discharged from the ICU in 3 days; his insur-
ance does not cover a longer hospital stay once his acute
methamphetamine poisoning is treated.
Family Systems Theory in Relation to the
Johnson Family:
The health event the Johnson family is managing will be
viewed through the lens of a nurse who used Family Sys-
tems Theory as the foundational approach to working with
this family. A more detailed discussion of this family nurs-
ing system can be found in Chapter 3.
Concept 1—All Parts of the System Are
Interconnected: In the Johnson case, all members of
the family are affected by Tony’s dual DSM-5 diagnoses of
amphetamine dependence and bipolar disorder, and his
dramatic overdoses and near-death experiences. His father
feels enormous guilt and is afraid to confront and set limits
with his son for fear of sending him to his death. His mother
reluctantly verbalizes feeling guilty but lacks sincerity. Her
son feels she does not want to change her own behavior;
thus, admitting guilt is not possible for her. His stepmother
is more realistic because she is not as emotionally attached
to Tony, but she worries about the effects of Tony’s drug
use and the worry it causes Steve, and she fears a relapse
of Steve’s own bipolar symptoms.
addressing Tony’s needs. She is influential with both Steve
and Mary in making decisions about Tony. She has a daugh-
ter from a previous marriage, Rachael, who is 30 years old.
Harold, Tony’s stepfather, is 11 years older than Mary
and, in many ways, is a father figure for his wife. He dotes
on his 12-year-old son and largely ignores his stepson and
stepdaughter; he does brag about Susie’s successes. He is
a successful building contractor and is able to provide a
luxurious life for his wife and son.
Susie, 14 years old, is bright and well behaved. Tony
calls her the “perfect” child he never was. She is an honor
student, talented in music and art, and well liked by her fel-
low students and by adults. She worries about Tony and has
always tried to please him. She can’t understand why he
gets so mad at his parents and her; she tries to encourage
him to enter treatment and tells him she misses him very
much. Her parents divorced when she was about a year
old, and she has lived most of the time with her mother
who remarried and had another son soon after the divorce.
Her stepfather is very attached to her half-brother and takes
him with him to work and on fishing trips. Susie loves her
father very much but sees him only every other weekend
and holidays.
Steve’s mother, Frances, lives about an hour away, is
90 years old, and is very fond of and sympathetic to Tony.
Steve’s father died when Tony was young. His parents
owned a grocery store that they ran as a family.
Mary’s parents, Thomas and Emma, live nearby.
Thomas is a wealthy but distant businessman who gave
money rather than time to his wife and children. Emma (continued)
3921_Ch16_521-558 05/06/14 11:19 AM Page 547
Concept 2—The Whole Is More Than the Sum
of Its Parts: In the Johnson family case study, the com-
plexity of the blended family increases the interconnected-
ness and interdependence of the family members. It is not
just parents and children or grandparents and parents, but
a complex system involving different permutations of the
family relationships that can deteriorate over time as the
stress of Tony’s illness takes its toll on the entire system.
Concept 3—All Systems Have Some Form of
Boundaries or Border Between the System and
Its Environment: In the Johnson family, the normal
boundaries of self and others, and of family and outsiders,
are dysfunctional. Spousal boundaries are violated by infi-
delity; parent-child boundaries are violated by theft and
parents drinking with substance-abusing children. Some
of the boundaries are closed by distant, aloof parents and
spouses. Tony demonstrates some flexible boundaries by
refusing to allow visits by some family members who can
negatively affect his recovery but allowing visits from others
who can support his treatment outcome.
Concept 4—Systems Can Be Further Organized
Into Subsystems: The Johnson family has many subsys-
tems: parent, parent-stepparent, parent-child, grandparent-
parent, sibling, grandparent, and in-law. Each of these
subsystems can be mobilized to help with the goals
defined for the family. Specifically, the mother-father-
stepmother-son subsystem will probably prove most
influential in discharge planning.
548 Nursing Care of Families in Clinical Areas
Mary’s
church
Hospital
social worker
Medicaid
Police
Drug-using
friends
Doug—
Tony’s drug-free
friend
Rehabilitation
program
CCU nurses
Grandma
Frances
Mary’s
parents
Strong relationship
Weak relationship
Tense relationship
Direction of
energy flow
FIGURE 16-2 Johnson family ecomap.
3921_Ch16_521-558 05/06/14 11:19 AM Page 548
Family Impact:
In the Johnson family, objective impact includes the finan-
cial costs of treatment, physical strain and damage, effects
on the health of other family members, and disruption in
the daily lives of many of the family members. The subjec-
tive impact is the enormous guilt and fear felt by the family
members, the damage to Tony’s mental and social health,
the disruption felt by other children in the family, the strain
placed on the marriages, and the disrupted family routines,
such as regular mealtimes and leisure time.
Social Support and Stigma:
The Johnson family has been moderately successful in
previous generations at hiding the substance abuse and
dysfunction. Although more acceptable now than in previous
generations, some social stigma is attached to divorce, remar-
riage, alcoholism, drug addiction, and mental illness—all of
which affect the Johnson family. Methamphetamine addic-
tion carries a large social stigma today. Family and profes-
sional care providers need information that is evidence based
to increase the understanding of the immense physical, men-
tal, and social impact this addiction has on the family. Provid-
ing family members with accurate information about the
disorder and the treatments can improve the social support
family members provide to the individual with the substance
use problem, as well as improve family functioning.
Coping and Resiliency:
The Johnson family is in need of intervention to teach it
more successful ways of dealing with Tony’s and others’ be-
haviors, and with feelings of worry and concern. Most mental
health professionals would suggest that they attend 12-step
meetings for families of substance abusers, and that they
have family counseling with Tony. All subsystems need help
learning more effective coping strategies, from those who
remain aloof from the problems to those who become
overly enmeshed in the lives of other family members.
Assistance From Mental Health Professionals:
The Johnson family needs referral to a treatment facility
that focuses on the needs of the family and the enabling
behaviors of family members. In addition, the extended
family needs counseling concerning the impact of these
disorders on the family and the maladaptive coping styles
being used. Tony needs treatment for both his substance
abuse and his bipolar disorder.
Family psychoeducation for the Johnson family would
include education about substance abuse and bipolar
disorders, coping skills for Tony and the family members,
especially in dealing with grief and anger, and effective
communication skills to express feelings constructively.
Mental Health Care Nursing From a Family
Systems Perspective:
This section will identify the needs of each member of the
Johnson family and address the family as a whole by look-
ing at the family from a Family Systems perspective.
Assessment: The ICU nurse and a social worker conduct
the assessment of the Johnson family with Tony, Steve,
Mary, and Debbie. It includes the following:
• Perception of and understanding of the illness: The
Johnson family has some experience with substance
abuse and bipolar disorder. The nurse assesses whether
the knowledge is accurate and current.
• The primary complaint, symptoms, or concerns: The
Johnson family believes that Tony’s illness is the family’s
“problem.” In reality, the dysfunctional family dynamics
are more central needs. Since this crisis has arisen, the
family’s biggest concern is Tony’s safety. They now fear
that Tony will either end up dead or in prison.
• Physical, developmental, cognitive, mental, and emotional
health status: The Johnson family is in a great deal of
emotional pain and is in a crisis state at this time. The
family’s stress level is at an all-time high.
• Health history: The Johnson family has a history of men-
tal health problems but appears to be physically healthy
otherwise.
• Treatment history: Tony has a history of unsuccessful
treatment attempts, with brief periods of abstinence from
alcohol and drugs, and minimal treatment for his bipolar
disorder. Tony takes mood-stabilizing medication inter-
mittently but has not had a long-term relationship with a
psychiatrist since he was 20.
• Family, social, cultural, racial, ethnic, and community
systems: The Johnson family systems have been de-
scribed and are reflected in the ecomap of the family
(see Fig. 15-2). Mary is involved with church activities.
Tony is in contact with friends from high school in
addition to his friends who use drugs.
• Activities of daily living and health habits: These activities
are seriously disrupted for Steve, Debbie, Mary, and Susie.
The stress, worry, and concern they have for Tony, and the
time and energy they are using to help Tony find a place to
live and get into treatment, are affecting their own abilities
to spend time focusing on their own health and well-being.
• Substance use: The Johnson family has alcohol, cocaine,
and methamphetamine abuse in its history.
• Coping mechanisms used: Although some healthy
mechanisms are used by the Johnson family, they also
Family Mental Health Nursing 549
(continued)
3921_Ch16_521-558 05/06/14 11:19 AM Page 549
use rationalization, projection, denial, and substance use
as ways of coping.
• Spiritual and religious beliefs or values: The Johnson
family members state they are Christians, but the only
family members to attend services or admit to spiritual
practices are Steve, Mary, and Frances. Steve uses
meditation to maintain focus in his life but has been
unable to do so for many months as a result of his in-
creased time spent on attempting to keep track of Tony.
• Economic, legal, or other environmental factors that affect
health: Steve’s finances have been strained by Tony’s ill-
ness. Harold and Mary refuse to accept any of the mone-
tary burden of his care, saying that “he needs to take care
of himself,” but they remain emotionally involved.
• Health-promoting strengths: There is obvious love
between Tony and his father and stepmother, and be-
tween Tony and his grandmother, Frances; this can
be mobilized to promote healthy family behaviors and
communication.
• Complementary therapies used: Tony’s friends have rec-
ommended acupuncture for his addictions, but he has
not been clean long enough to try it. Debbie is trying
meditation to ease the stress and is trying to get Steve
to join a yoga group with her.
• Family conflicts: Numerous unresolved family conflicts
continue in the Johnson family.
• Familial roles and responsibilities: In the Johnson family,
Mary alternates between being overprotective and harsh
and critical with her children. Steve is an enabler and un-
able to set appropriate limits. Susie is pseudomature in
her relationship with Tony.
• Treatment goals: The treatment goals for the Johnson
family are to get Tony into a short-term residential treat-
ment facility and to find a long-term treatment program
for families with a member with dual diagnoses. The
family desires social support from others with similar
experiences, education regarding Tony’s ongoing treat-
ment options, and skills training that will help them
communicate better with one another and teach them to
manage the impact of these disorders on the family in
between these intermittent crises.
• The person’s ability to remain safe: Without long-term
treatment and medication management, Tony is at great
risk for harm.
Diagnosis: Tony’s dual diagnosis of bipolar disorder with
methamphetamine dependence helps determine the best
treatment approach for Tony as an individual. His dual dis-
order probably began when he was an adolescent. For
Tony, he describes the feelings of depression and hope-
lessness preceding his misuse of drugs.
But it is often said that the “mentally ill” patient is
just the “delegate to the convention” for the family; most
experts advocate for the inclusion of the family in treat-
ment. In addition to the plan of care that staff nurses
have established to address Tony’s individual nursing
diagnoses, family diagnoses for the Johnson family in-
clude the following:
• Compromised family coping related to situational crisis
as evidenced by Tony’s overdose and hospitalization,
the family’s disruption in their daily activities, and the
increased need for support.
• Dysfunctional family process related to drug abuse, as
evidenced by familial conflict and ineffective problem
solving.
• Ineffective family therapeutic regimen management re-
lated to decisional conflict (discharge decision), economic
difficulty, and excessive demands on family as evidenced
by verbalization of desire to manage Tony’s treatment and
prevent the negative sequelae of his methamphetamine
abuse and untreated bipolar disorder.
Outcome Identification: For the Johnson family and
Tony, treatment attempts have failed to date, and it appears
that Tony will need to aim for abstinence and control of his
mental illness to survive. The desired outcomes for the
Johnson family include but are not limited to Tony’s recovery
from his methamphetamine addiction/abuse and control
of his bipolar disorder. Outcomes for the family include
identifying familial support systems in the community, ex-
ploring financial options for paying for Tony’s treatment,
making a family decision regarding the best treatment op-
tion available for Tony, Tony’s acceptance into a residential
treatment facility, expressing anger appropriately, discussing
openly substance abuse and other “family secrets,” setting
limits on inappropriate and enabling behavior, and honoring
individual and family boundaries and needs.
Planning: For the Johnson family, an integrated program
in the community is most appropriate but not easy to find
and often quite expensive. Discharge planning for the
Johnson family includes the following: the family will be
given information about appropriate referrals for residential
care, the family (and Tony) will seek out and accept an ap-
propriate referral, and Tony will be discharged to the refer-
ral facility. The family will also be given referrals to the Meth
Family and Friends Support Group, as well as the NAMI.
The family will also be referred for counseling to a therapist/
counselor who is available through Steve’s insurance plan
so family members may work on their communication and
coping skills, develop more appropriate boundaries with
one another, and address some of their own needs.
550 Nursing Care of Families in Clinical Areas
3921_Ch16_521-558 05/06/14 11:19 AM Page 550
Implementation: Tony and his family accepted a
referral to a Volunteers of America drug-free facility/
treatment program in which family members participate
on a regular basis. This program is free to Tony as long
as he continues to work at the facility. He was willing to
accept this placement, and it did not burden Steve eco-
nomically. Other discharge plans were also effectively
implemented.
Evaluation: Follow-up is necessary to determine the ef-
fectiveness of the referral in assisting the family to function
more appropriately, helping Tony to be drug free, and pro-
viding treatment for Tony’s bipolar disorder.
Benefits of Involving Family: In the Johnson family,
Tony is reaching out for help from his family. He has been
unsuccessful in receiving and accepting treatment on his
own, and he needs the resources of his family (insurance
and finances) to get the treatment he needs. The family
needs him healthy to improve its self-image and its own
successful functioning.
Barriers to Involving Family: Many of the barriers to
involving the Johnson family are a result of the family dy-
namics that the family exhibits. The family has a pattern of
rescuing Tony during periods of crisis and has difficulty set-
ting appropriate limits and insisting that Tony take responsi-
bility for his actions. They tend to become overly involved
during some periods and remain aloof at others, resulting in
inconsistent participation. They are in need of long-term
partnership with a treatment team. Tony’s lack of commit-
ment to treatment hinders any type of long-term relationship
being established with his family. In addition, Steve may ex-
perience a sense of guilt that Tony may have inherited the
bipolar disorder from him, and he may need counseling to
express some of these feelings. The stress of Tony’s illness
and recent crisis may exacerbate Steve’s own disorder.
Family Mental Health Nursing 551
(continued)
Karen
14 yr
Emma
67 yr
Retired
school
teacher
Tom
21 yr
Paranoid
Schizophrenia
Lives at home
Student
Parents killed in car
accident 5yrs ago
FIGURE 16-3 Anderson family genogram.
Family Case Study: Anderson
Family
The following brief case study illustrates how a school
nurse’s interaction with a student led to psychoeducation
and support for members of the entire family. The Anderson
family consists of a grandmother and the two older
children she is raising. See Figure 16-3 for the family
genogram.
Karen, age 14, has an older brother, Tom, who is 21
and still lives at home. Tom was diagnosed with paranoid
schizophrenia when he was 17. Their grandmother, Emma,
3921_Ch16_521-558 05/06/14 11:19 AM Page 551
is raising Karen and Tom because both of their parents
were killed in a motor vehicle accident 5 years ago. Emma
is 67 and is a retired schoolteacher with a limited income.
Karen seldom brings friends over to the house because
she does not want to be embarrassed by her brother. Tom
has been acting paranoid and frequently mumbles sen-
tences under his breath that don’t make any sense to
Karen. Karen is aware that the psychiatric mental health
nurse practitioner is in the process of regulating his psychi-
atric medications but she thinks that things will just never
get better. Karen is afraid that she’s going to become just
like her brother when she gets older and worries that her
grandmother won’t be able to take care of both of them.
Karen’s grandmother takes Tom to his psychiatric medica-
tion appointments and also to individual therapy and is
preoccupied with the thought that she is going to have to
take care of Tom for the rest of her life—she loves Tom
but had been looking forward to living independently and
doing things with her friends.
The school nurse was aware of Karen’s living situation
and asked Karen to come and see her after school. The
nurse did a brief assessment (see Figure 16-4 for the family
ecomap) and was able to help Karen voice her fears and
concerns about her brother’s disorder. She spent some
time teaching Karen about schizophrenia and treatments.
Karen felt relieved to be able to talk to someone and learn
more information that helped her understand why her
brother did and said things that did not make sense to her.
The nurse was aware of a local NAMI chapter that had a
separate parent and sibling support group for families who
had a family member with schizophrenia. Reluctantly,
Karen went to a meeting where she was relieved to hear
Friend
School RN
Friends
Psychiatric
mental health
NP
Job training
program
NAMI
local
chapter
Emma
67 yr
Karen
14 yr
Tom
21 yr
Strong relationship
Normal relationship
Weak relationship
Tense relationship
Direction of
energy flow
FIGURE 16-4 Anderson family ecomap.
552 Nursing Care of Families in Clinical Areas
3921_Ch16_521-558 05/06/14 11:19 AM Page 552
Family Mental Health Nursing 553
the stories from other kids her age and was surprised to
learn that they had similar experiences. Karen’s grand-
mother hesitatingly went to a support group—she had
driven Karen to the NAMI meeting and sat in the car and
eventually decided to attend a meeting herself. Karen and
her grandmother eventually began to talk more openly
about their worries and concerns.
Tom’s psychiatric mental health nurse practitioner
(PMHNP) learned from Tom that his sister and grand-
mother were attending NAMI support groups. The PMHNP
asked Tom if it would be okay if Karen and his grandmother
could come to one of his appointments and he agreed.
The PMHNP spent time explaining the purpose and ad-
verse effects of the medications Tom was taking and en-
couraged Karen and Emma to contact her if they noticed
changes in his behavior that might suggest his symptoms
were increasing or he was having a side effect from the
medications.
As Tom became stabilized on his medication he began
to be more involved in communicating with his sister and
grandmother. Eventually, Karen became more comfortable
bringing her friends to the house. Emma was able to learn
more about community training programs that Tom could
attend during the day to learn a skill that could eventually
lead to a job. The job-training program was part of a com-
munity grant and so did not add a financial burden to
Emma. Emma was now able to do more things during the
day with her friends. Psychoeducation decreased not only
the family stress as a unit, but also Karen and Emma’s
stress. The school nurse was instrumental in providing
psychoeducation, which led Karen and Emma to peer-led
support groups.
SUMMARY
Nurses play an important role in not only helping
families manage their lives when a member of the
family has an MHC, but also in preventing MHCs
from occurring. Providing mental health nursing
care may be challenging due to the stigmas associ-
ated with MHCs, but it is also a privilege. The
nurse-family relationship is very important in effect-
ing positive outcomes: nurses can reduce stigmas;
correct myths about MHCs; offer family-centered
interventions that promote family health, including
referrals to appropriate resources; and provide
nursing approaches that change a potentially neg-
ative experience into a positive one. The following
points highlight critical concepts that are addressed
in this chapter:
■ A family-focused approach to providing
mental health care to families, that is, view-
ing the family as a unit, includes supporting
families in their natural caregiving roles in
ways that encourage family collaboration and
choice in treatment decisions.
■ There are improved outcomes for the person
with an MHC if the health professional
collaborates with families when providing
treatment to the individual.
■ Physical and/or mental comorbidities are
frequently present when someone has a
mental health condition.
■ Common needs for families living with a
family member with an MHC are support,
information, skills and training, advocacy,
and referral sources.
■ Families value interactions with health
providers that demonstrate openness, coop-
eration, confirmation, and continuity.
■ Nurses must have an attitude toward family
members that is perceived as nonblaming and
accepting in order to establish a collaborative
relationship with the family.
■ There are many effective psychotherapeutic
and psychological interventions available,
including family therapies, mother and infant
psychotherapies, and brief cognitive therapy
appropriate to the age and stage of child
development.
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■ Al Anon: www.al-anon.alateen.org
■ American Psychiatric Association: www.psych.org
■ American Psychiatric Nurses Association: www.apna.org
■ American Psychological Association: www.apa.org
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■ Federation of Families for Children’s Mental Health:
www.ffcmh.org
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■ International Society of Psychiatric–Mental Health Nurses:
www.ispn-psych.org
■ Mental Health America: www.nmha.org
■ National Alliance on Mental Illness: www.nami.org
■ National Institute of Mental Health: www.nimh.nih.gov
■ Tidal Model: http://www.tidal-model.com
■ Substance Abuse and Mental Health Services: www.samhsa.gov
■ Veteran’s Administration Mental Health: www.mentalhealth.va.gov
■ World Health Organization: www.who.int
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559
Families and Community/
Public Health Nursing
c h a p t e r 17
Linda L. Eddy, PhD, RN, CPNP
Annette Bailey, PhD, RN
Dawn Doutrich, PhD, RN, CNS
C r i t i c a l C o n c e p t s
■ Community is a mindset, not a place.
■ Transitioning from individually focused nursing care to care of families and communities is a process.
■ Community/public health nurses care for families in a variety of settings.
■ Community/public health nurses view families as subunits of the community or as clients in the context of the
community.
■ Community/public health nurses aim to meet the holistic needs of families and communities while targeting priori-
tized health needs.
■ Healthy families contribute to healthy communities.
■ Community/public health family nursing is grounded in social justice and culturally safe, ethical practice.
■ Rather than blaming families for their situations, community/public health nurses think upstream to consider how
social, political, economic, and environmental conditions affect families’ health choices and outcomes.
■ Using a combination of relational collaboration and health promotion strategies and principles, community/public
health nurses strive to partner with families to assist with all levels of healthy change.
■ Nurses foster interconnectedness among families in the community.
■ Family interventions in the community are targeted toward primary, secondary, and tertiary prevention.
■ The nurse-family relationship is central in interventions at all three levels of prevention.
■ Community/public health nursing is evidence based and policy driven.
■ Interventions for families are planned, implemented, and evaluated from a health promotion perspective.
3921_Ch17_559-582 06/06/14 12:42 PM Page 559
What does health mean to you? What are the in-
dicators you use to conclude that you are either
healthy or unhealthy? Different people will apply
different indicators of health. A definition of health
set by the World Health Organization (WHO) in
1948 is that health is “a state of complete physical,
mental, and social well-being, and not merely the
absence of disease or infirmity” (WHO, 1948,
p. 1). This definition implies that achieving health is
much more than treating diseases. Health is not just
physical, it is emotional and social. Community/
public health nurses understand that creating a
balance in the various dimensions of people’s
lives—culture, society, economic, politics, and their
physical environment—is crucial in helping them
to cultivate health (WHO, 1986). Community/
public health nurses recognize that disease patterns
are a result of interactions between human beings
and their environments and this understanding
guides their actions. But how do community/public
health nurses transform this understanding of
health into health promotion for families?
A broad definition of family guides community/
public health nurses toward inclusiveness in work-
ing with and understanding complex family sys-
tems. Family, for purposes of this text, comprises
two or more individuals who depend on one an-
other for emotional, physical, and economic sup-
port. The members of the family are self-defined.
Along with this broad definition of family,
community/public health nurses utilize two preva-
lent schools of thought. One view sees the family
as the unit of care and the community as context.
The other view focuses on the community as client
with the family as context. The commonality be-
tween these views is that family, and thus family
health, is indistinguishably linked to community.
Therefore, health promotion actions should be
concurrent and encompassing for both contexts.
Kaiser, Hays, Cho, and Agrawal (2002) have de-
scribed the complexity of nursing care based on
“family as client” in community/public health nurs-
ing. Two key issues that contribute to the complex-
ity are (1) labeling family health problems, and
(2) identifying the level of need of the family as a
whole. Identifying family needs and developing a
plan of care for families cannot be done in isolation
from the broader context of their surroundings and
experiences. When working with families, nurses
need to consider environmental, psychological, and
behavioral health issues, as well as those of a more
physiological nature. Doing so recognizes that fam-
ily health problems have contextual roots.
It is important to note that for some individu-
als, the definition of self is wrapped up in the
family (Doutrich, Wros, Valdez, & Ruiz, 2005).
For example, familismo has been reported as a typ-
ical feature of Hispanic families (Vega, 1990).
Familismo, according to the classic work of Sabogal,
Marín, Otero-Sabogal, Marín, and Pérez-Stable
(1987), includes three specific types of value orien-
tations: (1) obligations to provide support; (2) per-
ceived high levels of help and support from family;
and (3) the perception of relatives as behavioral and
attitudinal referents, meaning that one’s family
determines how one is perceived and perceives the
world. Caring for such families will require atten-
tion to these values, and to the understanding that
family is the unit of care rather than just the indi-
vidual. For the community/public health family
nurse, this definition of self that is inclusive of fam-
ily will influence the provision of competent and
culturally congruent family care.
Healthy communities are comprised of healthy
families. Hence, families as units of relationship
are important components of communities, and
undoubtedly, are heavily affected by their com-
munity’s state of health. The word community
means more than just a geographical space; it is a
group of people who share similar interests, needs
and outcomes, regardless of geographical location
(Young & Wharf Higgins, 2012). Community/
public health nurses understand the effects that
communities can have on individuals and fami-
lies, and recognize that a community’s health
is reflected in the health experiences of its mem-
bers and their families (Canadian Public Health
Association [CPHA], 2010; U.S. Department of
Health and Human Services [USDHHS], 2001).
Issues of violence, unemployment, unclean phys-
ical environments, unsupportive relationships,
and poor access to needed resources (i.e., food,
shelter) are just a few insignia of an unhealthy
community. These issues are inextricably linked
to the health of families. Promoting and sustain-
ing health for families means helping them to tap
into their personal strength, access social and
economic resources, and cope with stressors
(CPHA, 2010). Community/public health nurses
use health promotion strategies, such as facilitat-
ing access to resources, to improve the health of
families.
560 Nursing Care of Families in Clinical Areas
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Community nursing places an interest in the so-
cial, political, and economic aspects of health to help
individuals, families, and communities gain a higher
degree of harmony within the mind, body, and soul.
A public health nurse who visits a new mother in her
home and realizes that a bed used for the newborn
baby is infested with bedbugs cannot simply focus
on the physical health of the mom and baby. Paying
attention to lack of proper resources caused by
poverty becomes an essential aspect of the nurse’s
role in promoting health for this family. In fact, the
degree to which nurses can contribute positively to
the well-being of vulnerable families in communities
depends on their convictions and commitments to
modify these factors, as well as society’s support and
recognition of the importance of their work. This
chapter offers a description of community health
nursing in promoting the health of families in com-
munities. It begins with a definition of community
health nursing, and follows with a discussion of con-
cepts and principles that guide the work of these
nurses, the roles they enact in working with families
and communities, and the various settings where
they work. This discussion is organized around a vi-
sual representation of community health nursing.
The chapter ends with a discussion of current trends
in community/public health nursing.
WHAT IS COMMUNITY/PUBLIC
HEALTH NURSING?
According to the CPHA (2010), community/public
health nursing involves a synthesis of nursing theory
and public health science that focuses on population
health promotion and primary health care with the
intention of maintaining and promoting health, pre-
venting illnesses and injuries, and developing com-
munities. Congruently, the American Public Health
Association (2008) states that “public health nurses
integrate community involvement and knowledge
about the entire population with personal, clinical
understandings of the health and illness experiences
of individuals and families within the population”
(p. 1). These descriptions communicate the critical
role of community/public health nurses in foster-
ing care for families beyond a clinical perspective.
In their process of work, community and public
health nurses rely on various concepts/principles to
promote health for individuals, families, and com-
munities. Drawing from various health promotion
frameworks and set standards of practice, these
nurses enact these concepts/principles in various set-
tings, with modifications based on families and com-
munities’ needs. This is done through a process of
empowerment, with the aim of achieving improved
health and empowered families. Empowerment en-
ables families to express aspirations and develop their
capacity to lead a fulfilling life. This work could in-
clude developing personal skills, and facilitating ac-
cess to economic resources, housing, and
decision-making institutions (Sen, 2000, as cited in
William, 2008). The model in Figure 17-1 helps to
contextualize community/public health nursing.
HEALTH PROMOTION
FRAMEWORKS, STANDARDS,
AND PRINCIPLES
Health promotion and disease prevention is founda-
tional to community/public health nurses’ work (see
Chapter 8 for more in-depth information on family
health promotion). Interventions for families are
planned, implemented, and evaluated from a health
promotion perspective. From this perspective, nurses
help to reduce health inequities by engaging families
in processes that promote their control over their
own health. This includes developing families’ skills,
increasing participation in their care process, and im-
proving access to resources. To prevent illness and
injuries, nurses employ health education to help fam-
ilies modify lifestyles/behaviors (e.g., healthy eating,
wearing bicycle helmets/seat belts, tobacco use pre-
vention, and physical activity). Nurses know that for
families to modify their behaviors, they must address
specific barriers beyond their control, such as lack of
money, lack of time, and stress. Rather than blaming
families for their situations, community/public health
nurses shift their thinking and focus on population
health, which is concerned with changing the social,
economic, political, and environmental conditions
that affect families’ health choices and outcomes.
The nurse can intervene in public policy at the
community, organizational, and/or the individual
level to help improve outcomes for individuals and
families. For the most sustainable outcomes, nurses
rely on the socio-environmental/socio-ecological ap-
proach pictured in Figure 17-1 to guide their actions
in addressing factors that impede on families’ choices
to improve their health. The socio-environmental/
socio-ecological model is based on systems theory
Families and Community/Public Health Nursing 561
3921_Ch17_559-582 06/06/14 12:42 PM Page 561
and is grounded in an understanding of health as in-
fluenced by interrelationships between personal and
environmental factors (Townsend & Foster, 2011;
Young & Wharf Higgins, 2012).
The health of vulnerable families in various
settings in society (e.g., homeless families, refugees,
victims of intimate partner violence, and families
in poverty) is affected negatively by many outside
circumstances. An understanding of the factors that
negatively affect family health, and strategies to
modify these factors, is a priority for the role of
community/public health nurses. The use of health
promotion strategies is crucial to helping nurses to
fulfill this priority. For example, the Breastfeeding
Coalition of Oregon (2012) used the socio-ecological
framework to outline who/what influences a mother’s
breastfeeding success and how public health
providers can influence these influencers. Using the
socio-ecological model, nurses are able to identify
and address influences at the individual level (e.g.,
culture, lack of personal breastfeeding skills), inter-
personal level (e.g., lack of support from family
and friends, lack of encouragement from health
care providers), community/environmental level
(e.g., neighborhood stress, lack of community breast-
feeding accommodations, workplaces, and hospi-
tals), and organizational level (e.g., public health
organizations, pediatric groups, and the formula in-
dustry). Community/public health nurses can target
these influencers using various health promotion
strategies. At the individual level, nurses need to
learn about cultural-specific barriers and needs and
build mothers’ skills in breastfeeding. At the inter-
personal level, nurses can provide education and fa-
cilitate access to support services to key influencers
to support mothers’ breastfeeding efforts. At the
community/environment level, community/public
health nurses can get involved in advocacy activities
such as organizing community activities during
World Breastfeeding Week, disseminating breast-
feeding materials at workplaces, and helping em-
ployers understand and initiate breastfeeding-
friendly practices. Finally, at the organizational level,
nurses can employ advocacy, coalition building,
562 Nursing Care of Families in Clinical Areas
Empowerment
Social determinants
of health
Work settings: homes, public health
department, community clinics/centers,
schools and acute care hospitals (USA)
Health Promotion
Frameworks
• Alma Ata declaration
on primary health
care
• Ottawa Charter for
health promotion
• Population health
promotion
Standards and
Competencies for
Practice
• CHNC
• ACHNE
• Quad Council of
Public Health nursing
organizations
Community/Public
Health Nurses Roles
• Health education
• Advocacy
• Facilitate access to
resources
• Assessment,
assurance, policy
development
Health Outcomes for
Families/Communities
• Empowerment
• Increased resilience
• Improved quality of life
• Increased ability to
access resources
• Increased
participation in care
intervention and
programs
Collaboration/
partnership
Cultural awareness/
sensitivity/safety
Nurse-client
relationship
Lived Experiences
Socio-environmental/Socio-ecological approach
Caring
S
e
lf
-A
w
a
re
n
e
s
s So
c
ia
l J
u
s
tic
e
FIGURE 17-1 Contextualizing community/public health nursing.
3921_Ch17_559-582 06/06/14 12:42 PM Page 562
lobbying, and program evaluation skills targeting
public health organizations, pediatric groups, and
the formula industry.
Health Promotion Frameworks
Whether working with individuals, families, or a
community, nurses use key health promotion (HP)
frameworks to guide their work. While various
health promotion documents exist, the following
three frameworks remain central to health promo-
tion interventions with families and communities:
1. The Alma Ata Declaration on Primary Health
Care (WHO, 1978) laid the foundation for
subsequent HP frameworks. It proposed five
interconnected primary health care principles:
health promotion, accessibility, public partici-
pation, appropriate technology, and intersec-
toral collaboration. The principles are based
on access to health and health care, equity,
and empowerment. Because families’ social
determinants (see Chapter 5) influence how
they access resources, manage chronic condi-
tions, and engage in healthy behaviors, ad-
dressing the social determinants of health for
families by integrating primary health care
principles is an integral component of nurses’
work. For example, community health nurses
who work with families to increase access to
needed resources that are cost- or distance-
prohibitive are practicing the primary health
care principle of accessibility.
2. The Ottawa Charter for Health Promotion
(WHO, 1986) proposed five overarching
strategies: develop personal skills, create
supportive environments, build healthy pub-
lic policy, strengthen community action, and
reorient health services. The strategies are
intended to enable families and communities
to increase control over and improve their
health. Using these strategies, nurses work
with families to address their physical, men-
tal, and social needs, and attain prerequisites
of health, such as shelter, food, sustainable
resources, social justice, and equity. For ex-
ample, to allow newcomers to acquire and
sustain needed resources, nurses may facili-
tate personal skill development in resume
writing, job seeking, and interviews for them
to acquire employment.
3. The Population Health Promotion Model
(Hamilton & Bhatti, 1996) draws on two
decades of health promotion knowledge to
guide practical actions. Key assumptions
of this model include the recognition of de-
terminants of health, the use of knowledge
gained from research and practice, collabora-
tion with families about the most appropriate
actions to care for them, and building rela-
tionships with families based on mutual re-
spect and caring, rather than on professional
power. In addition to incorporating these as-
sumptions into their work, nurses applying
this model are able to focus on the concerns
of at-risk groups, such as youth and women in
at-risk families. The population health model
focuses on the specific issues that put popula-
tions at risk. Interventions to modify these is-
sues are targeted at a broad social, political,
and economic level, and tailored to meet the
needs of groups at the community and family
level. For example, the elderly population is
victim to ageist assumptions and treatment in
society that may infringe on their social en-
gagement and integration. Knowing this,
nurses can educate communities and families
about ways to prevent age discrimination and
promote the health of the elderly.
Health Promotion Standards
of Practice
To be effective in their roles, community/public
health nurses integrate a broad range of competen-
cies and interrelated standards of practice in their
work. In Canada, community health nurses (CHNs)
work within the Canadian Community Health
Nursing Professional Practice Model outlined by
the Community Health Nurses of Canada (CHNC).
Seven standards are set by CHNC:
■ Health Promotion, Prevention, and Health
Protection
■ Health Maintenance
■ Restoration and Palliation
■ Professional Relationships
■ Capacity Building
■ Access and Equity
■ Professional Responsibility and Accountability
(CHNC, 2011)
In addition, Core Competencies for Public
Health in Canada (CPHA, 2010) provide a baseline
for nurses to fulfill effective public health functions
These standards/competencies guide community/
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public health nurses in delivering acceptable, safe,
and ethical care in an effort to protect, preserve,
and promote the health of families (CHNC, 2011).
Standards/competencies are also an integral part
of U.S. community/public health nursing practice.
In the United States, community/public health
nursing practice at the generalist and advanced
or specialist level is competency based, and is di-
vided into three tiers of practice: the public health
nursing (PHN) generalist, the PHN specialist or
manager, and the PHN organization leader or ad-
ministrator (Quad Council of Public Health Nurs-
ing Organizations, 2011). The competencies that
define these tiers of practice facilitate participatory
health promotion in the community (Kulbok,
Thatcher, & Meszaros, 2012). Community collab-
oration is essential to evolving community/public
health nursing roles in the context of national ini-
tiatives, including Healthy People 2020 (USDHHS,
2010), the Patient Protection and Affordable Care
Act (ACA) (U.S. House of Representatives, 2010),
the Family Leave Act HR 1723- 111th Congress,
2009), and the National Prevention, Health Pro-
motion, and Public Health Council: Executive
Order 13544 (Obama, 2010). In the United States,
the Association of Community Health Nursing
Educators (ACHNE) regularly updates the essential
documents that guide baccalaureate and graduate
nursing practice to delineate core knowledge and
competencies related to community nursing prac-
tice. Core competencies include the following:
■ Communication
■ Epidemiology and biostatistics
■ Community/population assessment and
planning
■ Policy development, assurance
■ Health promotion and risk reduction
■ Illness and disease management
■ Information and health care technology
■ Environmental health
■ Global health
■ Human diversity
■ Ethics and social justice
■ Coordination and management
■ Emergency preparedness (ACHNE Education
Committee, 2009)
Principles in the Process of Community/
Public Health Nurses’ Work
Underlying the role of the community health/public
health nurse in any context is a focus on maintenance
and promotion of health and prevention of ill-
nesses and injuries. These concepts and principles
include, but are not limited to, the social determi-
nants of health, cultural awareness/sensitivity/
safety, collaboration/partnership, nurse-client rela-
tionship, and empowerment. These principles are
rooted in the values of caring, social justice, self-
awareness, and honoring of families’ and commu-
nities’ lived experiences.
Social Determinants of Health
When working with families and communities,
one of the most important concepts that influence
community/public health nurses’ thinking and ac-
tion is social determinants of health. WHO (2012)
defines social determinants of health as “the con-
ditions in which people are born, grow, live, work
and age, including the health system. These circum-
stances are shaped by the distribution of money,
power and resources at global, national and local
levels” (paragraph 1).
These social determinants of health, or conditions
necessary for living, can include factors such as edu-
cation, income and unemployment, social support
and status, culture, housing, childhood development,
and access to health services (Mikkonen & Raphael,
2010; Stamler & Gabriel, 2012). These and other de-
terminants shape peoples’ vulnerability, put them at
risk for illnesses, and influence their social status and
the level of respect they gain in society. The resulting
health inequities are a substantial social justice issue,
with a potentially life-threatening influence on the
lives and health of people (WHO, 2009). Social in-
justice occurs when the health outcomes of individ-
uals, groups, or communities are disproportionally
affected because of differences in access and exposure
to opportunities (e.g., education, employment).
The effects of the social determinants of health
have been found to have a greater impact on health
than behavioral factors, such as smoking and
dietary habits (Mikkonen & Raphael, 2010). As a re-
sult of this significant influence on health equity, it
is critical that community/public health nurses rec-
ognize and address the social determinants of health
as the root cause of many issues faced by families and
communities. For instance, community/public health
nurses in Toronto, Ontario, working in the Investing
in Families program (Table 17-1) provide resources,
mental health care, and other support to sole-parent
families with children between the ages of 6 and
18 years who are receiving social assistance. For fam-
ilies in this program, determinants of health can be
564 Nursing Care of Families in Clinical Areas
3921_Ch17_559-582 06/06/14 12:42 PM Page 564
housing, and mental health needs. Often, nurses
work to facilitate improved access to community
mental health services and age-appropriate skill de-
velopment programs for these family members
(Browne et al., 2009).
Families and Community/Public Health Nursing 565
many and interrelated. So, community/public health
nurses target prioritized health needs, while trying to
meet the holistic needs of families. Key determinants
of health needs assessed by nurses would include
emotional, economic, employment, educational,
Table 17-1 Examples of Community/Public Health Nursing
Name of Program Role of the Community/ Specific Example Interprofessional
the Program Description Public Health Nurse of Programming Collaboration
Healthy Baby
Healthy
Children
Mental Health
Promotion
To enable all chil-
dren to attain and
sustain optimal
health and devel-
opmental potential
in the areas of
• Positive
parenting
• Breastfeeding
• Healthy family
dynamics
• Healthy eating,
healthy weights,
and physical
activity
• Growth and
development
To promote mental
health in Toronto’s
diverse communi-
ties through com-
petent clinical and
consultative prac-
tice along with
education, both
internally to
Toronto Public
Health programs
and externally
to relevant com-
munity agencies
Assessments
Referrals and
recommendations
Service coordination
Supportive counseling
Health promotion
Health teaching
Advocacy
The mental health nurse
consultant provides consultation
to a variety of internal and
external programs
Education and training
Supports families
with children from
0–4 years old
Assesses growth
and development,
mother-child
attachment
Links and refers to
various community
agencies
Using a narrative
approach, the mental
health promotion
team focuses on
suicide prevention,
violence prevention,
and mental health
promotion
Family home visitors
Registered dietitians
Nutrition promotion
consultants
Community nutrition
educators
High-risk consultants
Health promotion
consultants
Mental health nurse
consultants
Infant hearing
screeners
Family support worker/
social workers
Speech-language
pathologist
Program evaluators
Examples of internal
consultations
Healthy communities
Chronic disease
prevention
Healthy families
Communicable
disease control
Healthy environments
Examples of external
consultations
Children’s Aid Society
Parks, Forestry, and
Recreation
Shelter, support, and
housing
Toronto social services
Toronto community
housing cooperation
(continued)
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566 Nursing Care of Families in Clinical Areas
Table 17-1 Examples of Community/Public Health Nursing—cont’d
Name of Program Role of the Community/ Specific Example Interprofessional
the Program Description Public Health Nurse of Programming Collaboration
Investing
in Families
School Health
To improve the
economic, health,
and social status of
select families
receiving social as-
sistance in Toronto
Overall goal of
investing in family
public health nurs-
ing service is to
meet the health
needs of select,
vulnerable families
receiving social as-
sistance in Toronto
To promote healthy
lifestyles
To increase per-
sonal resilience
To improve physical
and mental health
To enhance social
and community
supports
To improve the
family’s circum-
stances through
greater access to
employment train-
ing and supports
To enhance the
physical, mental,
social, and spiritual
well-being of all
the members
of the school
community
To strengthen the
capacity of school
communities to
achieve optimal
health
To enhance re-
silience in all
school-age children
and youth in the
city of Toronto
Assessments
Referrals and
recommendations
Service coordination
Supportive counseling
Health promotion
Health teaching
Advocacy
Develop working relationships with
all members of the school com-
munity to promote healthy schools
Work with school communities to
increase their capacity to identify
health issues, develop and imple-
ment a plan of action, evaluate,
and build on their successes
Participate in existing health
committees and advocate for
the establishment of new school
health committees
Engage students and parents
in healthy school initiatives
Identify and consult with school
communities on emerging health
issues and trends
Link between schools and Toronto
Public Health (TPH) services and
programs
Partner with community organiza-
tions that support healthy schools
Supports families
with children from
6–18 years
Receives referrals
from Toronto Social
Services
Conducts detailed
assessments
Uses a strengths-
based approach
assessing the
positive assets
of the client
Liaison public nurse
establishes a healthy
school committee that
assesses the needs of
the school in a com-
prehensive manner
The work of the
school health com-
mittee includes
• Creating a shared
vision for a healthy
school
• Assessing strengths
and needs of the
school community
• Prioritizing the issues
• Developing a plan
• Implementing the
plan
• Monitoring and
evaluating the plan
• Celebrating success
Toronto Social Services
caseworker
Public health nurse
Health promotion
consultant
Mental health nurse
consultant
Recreationist
School administration
School boards
Teachers
Students
Parent council
Internal programs in
Toronto Public Health
Community agencies
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Cultural Awareness, Sensitivity,
and Safety
Community/public health nurses will often find
themselves working with a culturally diverse com-
munity. Within this diversity, often there are also
inequalities between different groups. To illustrate,
a report by the Institute of Medicine (IOM) found
that ethnic and racial minority populations “tend
to receive a lower quality of health care” (Smedley,
Stith, & Nelson, 2003, p. 1) than majority popula-
tions even when access and income were con-
trolled. The reasons for this finding are complex
but include bias, time pressures, and lack of lan-
guage and cultural understanding (Smedley et al.,
2003). Rectifying these inequalities is not as simple
as the nurse developing cultural competencies, be-
cause each individual, family, and community will
have variations in values and practices based on
their unique experiences (Browne et al., 2009).
That is, minority populations and diverse commu-
nities are heterogeneous. There is wide variation
within groups as well as between them.
It is important for nurses working with diverse
populations to reflect on similarities and differences,
and to undertake nurse-client relationships from
that place of understanding. Because community/
public health nurses work with people of diverse cul-
tural backgrounds in various settings, it is crucial for
them to engage in continuous reflective practice that
explores their values and beliefs, as well as those of
the groups/families they serve. This reflection can
lead to sensitive, client-centered care.
Many families that community/public health
nurses care for may not speak English well. This lan-
guage barrier can create challenges to provision of
care. Increasing the numbers of bilingual, bicultural,
underrepresented providers is identified as one of
the IOM solutions aimed at improving health dis-
parities, and a way for institutions/organizations
providing care to demonstrate cultural sensitivity.
Refugee families may comprise a subset of those
with limited or no English abilities that community/
public health family nurses will serve. It is the
professional responsibility of nurses to plan ahead
for visits with such families and ensure that families
understand what is going on in meetings, either
through an interpreter or other means.
Added to this context, refugee families, in partic-
ular, may have survived war, disaster, and devastat-
ing trauma such as torture, rape, and/or watching
family members or others die. Often, these families
are enduring post-traumatic stress disorder, depres-
sion, or both, which may intensify the life chal-
lenges they face. In understanding the family’s
context, nurses need to be aware of not only how to
satisfy language deficits, but understand how both
theirs and the families’ cultural backgrounds and
perspectives influence the caring process.
Community/public health nurses can care for
culturally diverse populations through the practice
of cultural safety. Originally developed in New
Zealand, cultural safety goes beyond cultural sen-
sitivity and competence to address the attitudes
of health care professionals, with an emphasis on
discrimination, power, and the effects of coloniza-
tion (National Aboriginal Health Organization
[NAHO], 2006). Culturally safe care involves the
nurse’s reflection and self-awareness of his attitudes
and beliefs with regard to “nationality, culture, age,
sex, political and religious beliefs” (NAHO, 2006).
This approach shifts the focus from the nurses’
expertise to the expertise of the community, which
defines whether the care has been safe or not
(Brascoupé & Waters, 2009). Culturally safe care
is provided to all within their cultural norms and
values, and in a manner that garners their trust and
promotes their empowerment. For example, in
promoting health for Aboriginal families hurt by
colonization processes, community/public health
nurses would invite the families to partner with
them. This process helps to build their capacity
and facilitate trust (Brascoupé & Waters, 2009).
Whereas culturally safe care can yield trust, open
communication, and empowerment, culturally
unsafe care can foster humiliation and disempow-
erment (Browne et al., 2009; NAHO, 2006). Pro-
moting culturally safe care requires that nurses are
sensitive to cultural differences, aware of their own
cultural values, and knowledgeable enough to
engage in culturally safe practices as defined by the
clients.
Collaboration and Partnership
Community/public health nurses are usually one
member of a team promoting health and well-being
for families and communities. They work in collab-
oration with other key members of a community/
family team. These collaborative relationships
are crucial to reaching “a common vision to de-
liver care” (Betker & Bewick, 2012, p. 30). Nurses’
Families and Community/Public Health Nursing 567
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participation in such collaborations depends on the
type and purpose for which they were formed. For
example, nurses working on a school health team
collaborate with various stakeholders—teachers,
parents, school board, government officials, and
others—to promote health in schools. On such
teams nurses may share specialized public health
knowledge, share needed resources, interface with
external partners, and/or contribute to decision-
making processes. The essence of these collabora-
tions is to share knowledge and power among key
stakeholders to produce solutions that no one part-
ner could achieve independently. Collaborations
are ways in which nurses honor families and com-
munity members’ lived experience. They realize
that health solutions are like large puzzles. The
lived experiences, knowledge, and expertise that
other members bring to the team represent an im-
portant piece of the puzzle toward better health
outcomes for families/communities.
address the shortage of family physicians in On-
tario, increase access to and quality of care, and de-
crease the number of individuals visiting the
emergency department for minor issues. Rather
than going to see a family physician, residents of
Ontario are able to receive primary care services
from an entire team of health care professionals in
the community. A Family Health Team might in-
clude a physician, registered nurse, nurse practi-
tioner, pharmacist, social worker, and dietitian.
Instead of being referred elsewhere, patients of the
Family Health Team are able to acquire services
from this team, which collaborates on the provision
of their care. As another example, the Investing in
Families program involves collaboration between
various divisions across the city of Toronto—Parks,
Forestry and Recreation, Toronto Social Services,
Children Services, and Public Health. At any point,
public health nurses can collaborate with any of
these partners in the provision of care for families
in the program.
Supporting families in their journey toward
healthy change within their lives and health re-
quires the development of collaborative partner-
ships between nurses and individuals, families,
and communities (CHNC, 2011). Due to the
complex nature of the social determinants of
health, community/public health nurses will find
themselves engaging in interdisciplinary team-
work. These interdisciplinary teams feature col-
laboration between individuals from a broad
variety of disciplines, such as sociology, econom-
ics, and health sciences (Reeves et al., 2010). The
collaborative relationships and partnerships with
other professionals, disciplines, clients, families,
and communities are critical to addressing the
complexity of modern health care, because no
single profession can accomplish this alone
(Reeves et al., 2010).
Nurse-Client Relationship With
Families and Communities
Community/public health nurses caring for families
in the community rely on the nurse-client relation-
ship as the foundation of their care (McNaughton,
2000, 2005). This relationship allows the nurse to
maximize client involvement, recognize strengths
and available resources, and ultimately facilitate em-
powerment at the individual, family, and commu-
nity level (CHNC, 2011). Within these professional
568 Nursing Care of Families in Clinical Areas
Interprofessional collaboration (IPC) refers to a
collaborative partnership between two or more
“different health and social care professions who
regularly come together to solve problems or pro-
vide services” (Reeves, Lewin, Espin, & Zwaren-
stein, 2010, p. xiii). One example of IPC can be
found in Ontario, Canada’s, Family Health Teams.
These primary care teams feature different profes-
sionals working in collaboration with each other
and the families. These teams are in existence to
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nurse-client relationships, the development of trust
is critical. For example, the early phase of home vis-
iting programs is based on the development of trust
through helping clients identify problems, engage
in mutual problem solving, make decisions about
necessary health services, and adopt health-promot-
ing behaviors. This trust-building phase is crucial
to the success of a program such as this, for instance,
because the efficacy of home visiting programs
seems to be greater in longer-term, relationship-
based programs than in shorter-term interventions
(Koniak-Griffin et al., 2003; McNaughton, 2004).
In addition to developing trust, the nurse-client re-
lationship is established for the nurse and the
client/families to work as partners toward accom-
plishing a mutual goal in health. As partners, the ex-
pertise of both is valuable to an interactive and
therapeutic process.
The nurse-client relationship makes the differ-
ence in the success of intervention programs.
McNaughton (2005) tested Peplau’s Theory of In-
terpersonal Relations in Nursing as the framework
for successful home visits. Using this theoretical
framework, she underscored the development of
successful nurse-client relationships between public
health nurses and pregnant women at risk. The
study focused on aspects of the nurse-client rela-
tionship, such as amount of nurse-client contact,
time spent on assessment versus intervention, and
communication skills. The results of this study sug-
gested that the greater number of interactions over
time contributes to more effective home visiting
programs. Recommendations included strengthen-
ing the nurse-client relationship by increasing the
number and frequency of visits, making assessments
more concise, focusing on interventions, and pro-
viding education for nurses on meeting clients’
emotional needs.
Doane and Varcoe (2007) state that in the cur-
rent health care context, nurses’ attention to rela-
tionships and implementing nursing values and
goals is “becoming increasingly challenging” be-
cause nurses are managing increased patient acuity,
higher nurse/patient ratios, and large workloads
(p. 192). Still, relational practice continues to be in-
tensely necessary for holistic, family-oriented care
(Tuffrey, Finlay, & Lewis, 2007). Nurses working
in the Healthy Baby Healthy Children (HBHC)
(see Table 17-1) program, for instance, are trained
in implementing principles of home visiting, which
includes establishing therapeutic relationships with
families. According to a mental health nurse with
the city of Toronto’s Public Health Department,
“one of the key approaches to building relation-
ships with families in home visiting is for nurses to
stay present in the visit, and relinquish the pressing
need to fill out paper work” (A. Reid, personal
communication, December 29, 2012).
In an example of relational practice, Doutrich
and Marvin (2004) paired students enrolled in a
community health nursing course with local public
health nurses in their clinical rotations. The stu-
dents reported that they learned to value relation-
ship building with community clients as critical to
practice. They described this relationship as the key
to “finding the door,” getting through it, and estab-
lishing a trust relationship with clients. Other im-
portant skills these students identified included
becoming aware of their own biases, getting the
client’s story, and not blaming or judging the
clients. This ability to remain nonjudgmental usu-
ally occurred when the students were truly engaged
with families and understood the family’s context.
Empowerment
Empowerment can be viewed as a process, a
nurse-facilitated, strength-based process in which
nurses and families work actively to share knowl-
edge that promotes families capacity to find and
sustain solutions for improved health outcomes
(Malone, 2012). Most important, although nurses
can facilitate empowerment, they cannot “give” it;
it is a process as well as an outcome. Although
hierarchical relationships still characterize the
power dynamics within many provider-client re-
lationships in health care, it should be the goal of
all nurses to facilitate empowerment within their
community/public health practice.
Facilitating healthy change can be difficult
because of the complex and fluctuating nature
of the family in its unique environment, and re-
quires considerable skill in various empowerment
strategies. Nurses must have the skills to build
trusting, nonjudgmental relationships that allow/
encourage families to tell their stories so they can
jointly uncover the family’s needs. For example, in
care planning, nurses begin with the client’s knowl-
edge of his situation first because this approach
recognizes and validates that clients have exten-
sive knowledge about their own health (Anderson,
Capuzzi, & Hatton, 2001). In a study by Falk-Rafael
Families and Community/Public Health Nursing 569
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(2001), the author revealed that active participa-
tion enabled individuals to increase control over
their own health. Additionally, community/public
health nurses must have skills that facilitate em-
powering families to make decisions about their
health (Aston, Meagher-Stewart, Vukic, Sheppard-
LeMoine, & Chircop, 2006; CHNC, 2011). For
example, nurses can adopt the role of mediator or
coach rather than director or decision maker. The
Community Health Nurses of Canada (CHNC,
2011) suggests a client- or family-centered ap-
proach to helping clients problem-solve by build-
ing on their strengths and resources available to
them. Rather than thinking of clients and families
as “powerless” or the nurse as having “power
over” them, Falk-Rafael (2001) conceptualizes
power as coming from within the person and de-
pending on the situation. Families who have hin-
drances to participating actively in empowering
processes need an advocate. Community family
nurses must learn to speak out and are obligated
to be actively involved in issues and policies that
affect their family clients. By doing so, nurses
give voice to the policy and environmental factors
that affect families, while also providing support
for the “individual, family, group, community,
and population to advocate for themselves”
(CHNC, 2011, p. 19). These actions are impor-
tant in transforming families and communities
from a state of powerlessness to recognition of
their own strengths.
SETTINGS WHERE COMMUNITY/
PUBLIC HEALTH NURSES WORK
Community/public health nurses care for families
in a variety of settings, such as the following:
■ In their homes
■ Community settings, such as schools, clinics,
adult day care or retirement centers, and cor-
rectional facilities
■ Outside for homeless families
■ Temporary housing, such as shelters or tran-
sitional or recovery programs
Although diversity exists in settings and families
specific to socio-demographics (i.e., ethnicity, age,
gender, sexual orientation, socioeconomic status,
and family type), geographical location, attitudes,
values, and subjective well-being, nurses use health
promotion concepts/principles to go between
people and their interactions with their environ-
ment in order to prevent illnesses and promote
health (WHO, 2012). Knowing what strategies to
use with different families requires an understand-
ing of their diverse needs. This section covers three
common settings where community/public health
nurses work: family homes, community nursing
centers, and public health departments.
Family Homes
Community/public health nurses working with
families make home visits to assess family health
status, needs, and their environment in order to
develop specific interventions and identify avail-
able resources. For example, community/public
health nurses conduct visits with their client, usu-
ally in the client’s home, after a baby is born. They
visit the home to determine safety, nutrition status,
emotional needs, and relationship support needs.
They then provide education, counseling, and re-
ferral as needed. Nurses help new mothers set
goals for making healthy lifestyle choices and fos-
tering personal growth. In some cases, nurses meet
with families and their infant to conduct genetic
counseling and inform them about the different
tests that are possible. In other situations, nurses
work with the elderly in their homes to help them
remain in their home through case management,
home care, and telehealth services. Assessment of
the social, emotional, and physical development of
families across the age span is a key role of the
nurses in home visiting programs. Nurses assess
the physical environment of the home, including
safety hazards, such as availability of smoke detec-
tors and fire extinguishers, any dangerous equip-
ment, and the adequacy of running water and
indoor plumbing.
In the HBHC program (see Table 17-1), for ex-
ample, nurses promote the health of mothers and
children in their homes. The HBHC program is
a free public health initiative implemented in On-
tario, Canada, to foster social, emotional, and
physical health for vulnerable children. Families
with anticipated poor birth outcomes, children
with challenges to thrive, family stress, little social
support, and low income are often referred to the
program. In this program, public health nurses
and family home visitors work together to assess
families’ situations (breastfeeding, nutrition, literacy,
570 Nursing Care of Families in Clinical Areas
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and social development, such as mother-child
bonding), help them to access services and sup-
ports, and facilitate skill development of parents
(Ontario Ministry of Children and Youth Services
[OMCYS], 2011). Community nurses working with
the Victorian Order of Nurses (VON) in Canada
provide home care services to families recovering
from an illness. These nurses conduct assessments,
provide personal support, and facilitate links to
community services (VON Canada, 2009).
Research has demonstrated the effectiveness
of home visiting programs in the United States
as well. The work of David Olds and his col-
leagues in the development and evaluation of the
Nurse-Family Partnership program (Olds, 2002;
Olds, Kitzman, Cole, & Robinson, 1997) illus-
trates the effectiveness of family-centered care
and community/public health nursing home vis-
itation. Nurses visited low-income, unmarried
mothers and their children. The families with
home visitation had significantly improved health
outcomes. The home visitation was found to con-
tribute to reductions in the following: number
of the mothers’ subsequent pregnancies, use of
welfare, child abuse and neglect, and criminal be-
haviors for up to 15 years after the first child’s
birth. The home visit nursing program was found
to reduce serious antisocial behavior and sub-
stance use as the high-risk children in the study
entered adolescence (Olds et al., 1998). As ado-
lescents, they ran away less often, were arrested
and convicted less frequently, were less promis-
cuous, and smoked and drank alcohol less than
comparable adolescents who did not receive
home visits. The results of this work, which has
been rigorously evaluated in controlled trials,
demonstrate how community/public health nurse
home visits in the community are beneficial for
high-risk families.
More recently, Olds et al. (2004) reported on the
outcomes of a longitudinal study of prenatal and
infancy home visits by nurses, using a primarily
African American urban sample. Their results in-
dicate that, compared with the control group,
women involved in the nurse home visiting pro-
gram had fewer subsequent pregnancies and births,
longer relationships with partners, and less use of
welfare. Eckenrode et al. (2010) found that prenatal
and infancy home visits reduced the rate of en-
trance into the criminal justice system and had
other positive program effects that were more
noticeable for girls than for boys. Moreover,
McNaughton (2004) reviewed 13 home visiting in-
terventions by registered nurses with maternal-
child clients from 1980 to 2000 and found that
about half of the interventions reported were effec-
tive in achieving the desired outcomes.
Empirical evidence for the efficacy of home
visit programs reveals that further research is nec-
essary, however. A recent search of the Cochrane
Database of Systematic Reviews uncovered two
reviews specific to nursing. Hodnett & Fredericks
(2003) found that, although the evidence did not
support the effectiveness of programs of nurse
home visits during pregnancy in reducing the
number of babies born too early or with low birth
weight, the interventions probably resulted in re-
duced maternal anxiety and lower cesarean birth
rates. Doggett, Burrett, and Osborn (2005) devel-
oped programs for postpartum women with drug
and alcohol issues. They found evidence that
home visits after the birth increased the engage-
ment of these women in drug treatment services,
but insufficient data were reported to confirm
whether this improved the health of the baby or
the mother. Further research is needed, with visits
starting during pregnancy. It is important to note
that both reviews also involved interventions by a
variety of health care professionals, as well as
trained lay health workers. In both of these situa-
tions, therefore, it is difficult to determine the
individual effect of nursing interventions on fam-
ilies. More research is needed tying theory to in-
terventions with regard to nursing home visits and
to specify the types of interventions and quantity
that are most effective.
Community Nursing Centers
Community/public health nurses also practice
within community nursing centers. These unique
centers, found in both rural and urban communi-
ties in the United States, offer the public access to
a wide array of nursing services in a single setting.
These programs typically provide services that are
not available elsewhere and are likely to focus
on the needs of underserved populations (Glick,
1999; Newman, 2005). Within these centers,
nurses focus on promoting health and preventing
disease; they offer health screening, education,
and well-child care. In addition, such centers may
offer secondary and tertiary prevention services,
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such as management of acute and chronic health
conditions, and mental health counseling.
Public Health Departments
Probably the most widely known and accepted
model for center-based services for families is
that used by county and state departments of
health services. Public health departments serve
the needs of individuals and families across the
life span in both center- and home-based models
and, more recently, in acute care settings in the
United States. These departments include serv-
ices to vulnerable groups, such as pregnant and
childbearing families (women, infants, and chil-
dren programs [WIC]), children with special
health care needs, individuals at risk for or diag-
nosed with infectious diseases, and those with
chronic conditions. Lahr, Rosenberg, and Lapidus
(2005) document an example of effective public
health nursing practice with families. These in-
vestigators found that, compared with parents re-
ceiving newborn care and education from private
clinics, those receiving care and education in pub-
lic health departments were less likely to choose
prone sleeping positions for their infant, a major
public health initiative to reduce sudden infant
death syndrome.
Public health departments care for high-risk
clients and are in a unique position to address issues
of intimate partner violence, for instance. Shattuck
(2002) reports positive outcomes from an interven-
tion program targeted toward preparing family
planning nurses who work in a public health de-
partment to recognize domestic violence. The in-
tervention, which consisted of a formal curriculum
offered to nursing staff, increased intimate partner
violence screening from 0% before the program to
16% in a 4-week period, and resulted in approxi-
mately 12% of women who screened positive for
violence. With respect to reducing intimate partner
violence, a goal for Healthy People 2020 (USDHHS,
2010), a role clearly exists for family-focused com-
munity nurses to make a difference.
Although many public health department serv-
ices are aimed at childbearing and childrearing fam-
ilies, there are programs for older adults with
chronic illness. One example is a public health nurs-
ing program aimed at educating older adults about
their high blood cholesterol levels, implementing
better dietary practices, and reducing cholesterol
levels. This nursing intervention consisted of three
individual diet counseling sessions given by public
health nurses. The nurses used a structured dietary
572 Nursing Care of Families in Clinical Areas
The model for these centers is usually multidis-
ciplinary and strives to provide affordable, accessible,
acceptable care that serves to empower individuals
across the life span to meet their own health care
goals. The focus on social justice in many of these
centers is realized by attempts to reach out to mar-
ginalized populations and to provide comprehensive,
quality, nonjudgmental health care. In keeping with
the community-as-mindset concept, community
nursing centers may be either physical places or they
may be embedded in more traditional health care
settings. Some community nursing centers provide
educational experiences for nursing students and
students from other disciplines, making these cen-
ters a place where nursing practice, theory, and re-
search can blend in a model that serves those who
need health care the most.
The Ontario Early Years Centers (OEYCs) is a
similar model in Canada. OEYCs are government-
funded, early learning drop-in programs for parents/
caregivers and children that are located in commu-
nities across the province of Ontario. Public health
nurses and other early years professionals and
experts from the community assist parents and
caregivers to get the help they need to promote
long-term learning, positive behavior, and health
among children within the first 6 years of their
lives. Parents, caregivers, and children participate
actively in educational activities together, while
public health nurses provide guidance and support
for new parenting skills and linkages to other serv-
ices in the community, such as prenatal nutrition
programs (OMCYS, 2010).
3921_Ch17_559-582 06/06/14 12:42 PM Page 572
intervention (Food for Heart Program), referred
elders to a nutritionist if they did not reach lipid
goals at 3-month follow-up, made reinforcement
phone calls, and sent newsletters. Cholesterol re-
duction was similar between the groups who re-
ceived the special interventions and those who
received a minimal intervention, but the special in-
tervention group had significantly lower dietary risk
assessment scores (Ammerman et al., 2003).
Chronic pain management in older adults living
in the community is a pervasive public health prob-
lem that can be amenable to public health nursing
interventions aimed at individuals and families.
Dewar (2006) has reviewed the literature about
chronic pain management by nurses in the commu-
nity. Dewar found that most studies focused on
pain assessment tools, and that less focus was on
how older adults managed pain and what commu-
nity resources were available to help these families
with pain-management issues. An effective nurse-
patient relationship is important in comprehensive
assessment and management of pain in the older
adult population.
The relationship between community nurses
and families of older adults was also found to be
important in a study of community nurses working
with older clients in Sweden (Weman & Fager-
berg, 2006). Caring for older families in the com-
munity requires nurses to be alert for signs of elder
abuse. Potter (2004) notes that community nurses
were often the only professionals invited into peo-
ples’ homes, so they must be alert to the many
forms abuse takes: physical, psychological, finan-
cial, sexual, and verbal. Nurses also must be aware
of omission of needed support and attention as a
type of abuse. Nurses need to know how to report
elder abuse in their communities and be willing to
take quick action to prevent further abuse. In many
U.S. states, nurses are mandatory reporters of elder
abuse. For example, in the states of Oregon and
Washington, nurses must report abuse of older
adults who sustain physical harm, financial ex-
ploitation, verbal or emotional abuse, lack of basic
care, involuntary seclusion, wrongful restraint, un-
wanted sexual contact, or abandonment by the
caregiver. Each state has an individual policy for
reporting to protective services. More information
about reporting elder abuse in the United States
can be found at the National Clearinghouse on
Abuse in Later Life (NCALL) Web site (http://
www.ncall.us).
COMMUNITY/PUBLIC HEALTH
NURSING ROLES WITH FAMILIES
AND COMMUNITY
In their capacities, community/public health nurses
play several roles. These include, but are not lim-
ited to, health education, advocacy, facilitation of
access to health resources, assessment, assurance,
policy development, referrals, building capacity,
and consultation. Table 17-1 illustrates some of the
diverse roles assumed by these nurses. In this sec-
tion we discuss community/public health nursing
roles in health education, facilitation of resources,
assessment, assurance, and policy development.
Health Education
Health education is essential to the promotion of
health and the prevention of disease in families.
Using information gained through family health
appraisals/assessments, community health nurses
reinforce health-promoting behaviors, and provide
health information and teaching in identified at-risk
areas. The Centers for Disease Control and Pre-
vention (CDC) lists five major determinants of
health: (1) genes and biology, (2) health behaviors,
(3) social environment or social characteristics,
(4) physical environment or total ecology, and
(5) health services or medical care (CDC, 2012;
WHO, 2012). Community/public health nurses
have a role in facilitating high-level wellness for
their clients by advocating for positive changes in
health determinants, including health behaviors,
social environment and characteristics, physical
environment and ecology, and health services.
Community health nurses use a variety of
strategies to modify behaviors, characteristics, or
care limitations identified in the health appraisal.
Teaching and health information can be used to
discuss immunizations, nutrition, rest, exercise,
use of seat belts, and abuse of harmful substances,
such as alcohol and drugs. Community health
nurses may refer families to programs and re-
sources that assist in their lifestyle modifications
(e.g., smoking cessation classes, exercise pro-
grams). One example of this is the “Biggest Loser”
intervention program that was designed to assist
clients in a West Virginia county to lose weight.
This intervention was developed in response to
high obesity rates and included a program based
Families and Community/Public Health Nursing 573
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loosely on the television show of the same name.
Nurses provided specific education, social sup-
ports, weigh-ins, exercise, and dietary help to the
participants, though in the public health interven-
tion, no one was voted off.
Health teaching, based on appraisal of the
physical environment, might also include infor-
mation on child safety and prevention of falls for
older adults. Other teaching might focus on psy-
chological or social environmental problems, such
as family communications or dealing with peer
pressure. In some situations, community health
nurses promote a healthy and safe environment by
meeting with the school board to provide evi-
dence about playground hazards or poor food-
handling practices.
Facilitate Access to Resources
A major health-promotion strategy is to ensure ac-
cess to health promotion and prevention services, in-
cluding immunizations, family planning, prenatal
care, well-child care, nutrition, exercise classes, and
dental hygiene. These services may be provided di-
rectly by community health nurses, or community
health nurses facilitate access to these services
through referrals, case management, discharge plan-
ning, advocacy, coordination, and collaboration.
Nurses must consider access to resources within
a context of what choices families realistically have.
For example, eating healthy meals requires that
healthy foods be available in locations that families
can access easily and without expensive transporta-
tion. Also, accessing health providers and facilities
requires that, in the United States, families have
some type of health insurance or other means to
pay. According to the 2010 U.S. census report, al-
most 50 million Americans (16%) do not have
health insurance (DeNavas-Walt, Proctor, &
Smith, 2012). This number is scheduled to im-
prove with the implementation of the Affordable
Care Act (ACA).
Facilitating access to resources for families who
are deprived due to race, social class, and gender
requires understanding of how social injustice op-
erates on a social level to cause such depravity. Paul
Farmer, a physician and author best known for his
medical work in Haiti and worldwide with tuber-
culosis and AIDS, wrote about structural violence
in his book, Pathologies of Power: Health, Human
Rights and the New War on the Poor (Farmer, 2003).
Structural violence refers to historical, economic,
and political roots of generational oppression. It
is about unequal treatment, racism, classism, and
discrimination. In short, it refers to systematized,
unequal access to resources. Working toward social
justice requires a partnership between families
and professionals. The community/public health
nurses’ responses to the structural violence perpet-
uated by policy, the myth of meritocracy (that any-
one who is hard working and deserving can succeed),
and our biases make it an ethical obligation to en-
gage in deep relational practice with the families
we serve.
Assessment, Assurance, and
Policy Development
Community/public health nurses are engaged in
the core public health functions of assessment, as-
surance, and policy development. These core func-
tions include assessing and monitoring the health
of communities and populations at risk to identify
health problems and priorities; ensuring that all
populations have access to appropriate and cost-
effective care (assurance); and formulating policies
designed to solve identified local and national
health problems and priorities. Assessment is facil-
itated by the trust that public health nurses have
earned from their clients, agencies, and private
providers, trust that provides ready access to pop-
ulations that are otherwise difficult to access and
engage in health care. In addition, these nurses
have knowledge of current and emerging health is-
sues through their daily contact with high-risk and
vulnerable populations. This trust and knowledge
provides the foundation for ways nurses work with
communities (populations) and families and indi-
viduals in the community. Table 17-2 lists the dif-
ferent assessment approaches nurses can use in the
community, based on the focus of the health care.
Assurance activities are the direct individual-
focused services that public health nurses provide.
Measuring health department performance is an-
other example of assurance (Novick, 2003; Zahner
& Vandermause, 2003). Although the current shift
in emphasis is toward assessment and policy devel-
opment, critical assurance activities remain for the
public health nurse. Assurance activities at the
community, family, and individual levels are out-
lined in Table 17-3.
In 1988 the Institute of Medicine (IOM) com-
piled a report called The Future of Public Health. At
that time the IOM articulated the Core Functions
574 Nursing Care of Families in Clinical Areas
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Families and Community/Public Health Nursing 575
Table 17-2 Comparison of Assessment Approaches
Community Family Individual
Analyze data on and needs of specific
populations or geographical area.
Identify and interact with key community
leaders, both formally and informally.
Identify target populations that may be
at risk. These populations may include
families living in high-density low-income
areas, preschool children, primary and
secondary school children, and elderly
adults.
Participate in data collection on a target
population.
Conduct surveys or observe targeted
populations, such as preschools, jails,
and detention centers, to gain a better
understanding of needs.
Evaluate a specific family’s
strengths and areas of concern.
This involves a comprehensive
assessment of the physical, social,
and mental health needs of the
family.
Evaluate the family’s living environ-
ment, looking specifically at sup-
port, relationships, and other
factors that might have a signifi-
cant impact on family health
outcomes.
Assess the larger environment in
which the family lives (their block
or specific community) for safety,
access, and other related issues.
Identify individuals within the family
who are in need of services.
Evaluate the functional capacity of
the individual through the use of
specific assessment measures,
including physical, social, and
mental health screening tools.
Develop a nursing diagnosis for the
individual that describes a problem
or potential problem, causative
factors, and contributing factors.
Develop a nursing care plan for
the individual.
Table 17-3 Assurance Activities in Community, Family, and Individual Care
Community Family Individual
Provide service to target populations,
such as child care centers, preschools,
worksites, minority communities, jails,
juvenile detention facilities, and
homeless shelters. Interventions may
include health screening, education,
health promotion, and injury
prevention programs.
Improve quality assurance activities
with various health care providers in
the community. Examples include
education on new immunization policies,
educational programs for communicable
disease control, assistance in developing
effective approaches, and support
techniques for high-risk populations.
Maintain safe levels of communicable
disease surveillance and outbreak
control.
Participate in research or demonstration
projects.
Provide expert public health consultation
in the community.
Ensure that standards of care are met
within the community (assurance).
Provide services to a cluster of
families within a geographical set-
ting. Services may be provided in a
variety of settings, including
homes, child care centers,
preschools, and schools. Services
may include physical assessment,
health education and counseling,
and health and developmental
screening.
Provide care in a nursing clinic to
a specific group of families in a
geographical location.
Provide nursing services based
on standards of nursing practice
to individuals across the age
continuum. These services may
encompass a variety of programs
including, specifically, First Steps
and Children With Special
Health Care Needs, and more
generally, child abuse prevention,
immunizations, well-child care,
and HIV/AIDS programs.
Assess and support the individ-
ual’s progress toward meeting
outcome goals.
Consult with other health care
providers and team members re-
garding the individual’s plan of
care.
Prioritize individual’s needs on an
ongoing basis.
Participate on quality-assurance
teams to measure the quality of
care provided.
3921_Ch17_559-582 06/06/14 12:42 PM Page 575
of Public Health and the Ten Essential Services of
Public Health in the United States. The Core
Functions identified in this report were Assess-
ment, Policy Development, and Assurance (IOM,
1988). These remain the guiding framework for
U.S. Public Health (CDC, 2011). In some areas
over time this changed the focus of public health
from delivering primary health care or providing
safety-net services to individuals to a more popu-
lation, upstream, data-driven, policy-focused or-
ganization. See Table 17-4 to review ways that
policy comes about relative to public health.
Though many local health departments still pro-
vide some level of health care to individuals or
families, comprised mainly of mothers and chil-
dren, this movement toward the core functions has
meant changes in what it means to be a public
health nurse or provider. For example, the grow-
ing number of new cases of pertussis in the United
States requires us to consider all health as public
health. With most serious morbidity and mortality
from pertussis occurring in infants who are too
young to mount an immune response to active
vaccines, community/public health nurses are ac-
tively working in acute care and long-term care fa-
cilities to vaccinate all adults to provide “herd”
immunity that shields our youngest and most vul-
nerable family members.
In response to the guiding framework of the core
functions and the research identifying built envi-
ronment and the social determinants of health, one
local public health department decided to develop
a lens for public health planning and policy. Called
the Growing Healthier Report, it was developed to
inform the process of updating the comprehensive
growth management plan. The Growing Healthier
Report is comprised of eight chapters, each having
to do with one of the social determinants of health.
The chapters are (1) Access to Healthy Food;
(2) Active Transportation and Land Use; (3) Parks
and Open Spaces; (4) Economic Opportunity; (5) Af-
fordable, Quality Housing; (6) Climate Change and
Human Health; (7) Environmental Quality; and
(8) Safety and Social Connections. Each chapter con-
tains the up-to-date research evidence, the current
conditions locally (local data from the assessment
576 Nursing Care of Families in Clinical Areas
Table 17-4 Activities That Influence Policy Development
Community Family Individual
Provide leadership in convening and
facilitating community groups to evaluate
health concerns and develop a plan to
address the concerns.
Recommend specific training and
programs to meet identified health
needs.
Raise awareness of key policymakers
about health regulations, budget decisions,
and other factors that may negatively
affect the health of communities.
Recommend programs to target
populations such as child care centers,
retirement centers, jails, juvenile detention
facilities, homeless shelters, worksites,
and minority communities.
Act as an advocate for the community
and individuals who are not willing or
able to speak to policymakers about
issues and programs of concern.
Work with business and industry to
develop employee health programs.
Recommend new or increased
services to families based on
identified needs.
Recommend programs to meet
specific families’ needs within a
geographical area.
Facilitate networking with families
with similar needs or issues. Guide
policymakers on specific issues
that affect clusters of families.
Request additional data and ana-
lyze information to identify trends
in a group or cluster of families.
Identify key families in a community
who may either oppose or support
specific policies or programs, and
develop appropriate and effective
intervention strategies to use with
these families.
Recommend or assist in the devel-
opment of standards for individual
client care.
Recommend or adopt risk classifica-
tion systems to assist with prioritizing
individual client care.
Participate in establishing criteria
for opening, closing, or referring
individual cases.
Participate in the development of
job descriptions to establish roles
for various team members who will
provide service to individuals.
3921_Ch17_559-582 06/06/14 12:42 PM Page 576
to workforce and economic constraints, some pub-
lic health services have switched to a focus on the
core functions and community/neighborhood in-
terventions. Skills in connecting planning to social
determinants of health, understanding the multi-
perspective views of all stakeholders, and being
able to translate (almost in a multilingual way) the
contextual realities of clients are among the skills
required (SmithBattle, Diekemper, & Leander,
2004). Community/public health nurses today
must become comfortable with geographical
information system (GIS) (Box 17-2) mapping
and epidemiology, and should know and be able to
connect with the communities these representa-
tions depict.
Nurse Practitioner Roles in Community/
Public Health Nursing
In April 2013, the National Organization of Nurse
Practitioner Faculties (NONPF) released the fol-
lowing six nurse practitioner population-foci com-
petencies: Family/Across the Lifespan, Neonatal,
Acute Care Pediatric, Primary Care Pediatric,
Psychiatric–Mental Health, and Women’s Health/
Gender Related. NONPF incorporated popula-
tion health into nursing education programs for
nurse practitioners, and into its accreditation for
these programs, with the intent that all nurse prac-
titioners be educated and competent in population
health.
One example of a program employing nurse
practitioners in population health takes place in
Oregon. Oregon has a comprehensive network of
child abuse assessment and intervention centers
designed to minimize trauma to child abuse victims
Families and Community/Public Health Nursing 577
function), conditions research identified as “needed
to thrive,” and policy/planning recommendations
(the policy development function). The goals and
timelines are measurable and there are strategies that
can provide benchmarks (the assurance function)
to help public health and community members un-
derstand how well the strategies are working. See
Box 17-1 for an example of health policy.
TRENDS IN PUBLIC HEALTH
Community/public health nursing positions in the
United States, rather than growing with popula-
tion needs, have declined. In the past two decades,
fewer nurses are public health nurses and these
nurses make up a lower proportion of the public
health workforce (Baldwin, Lyons, & Issel, 2011).
Like nurses in many contexts, those community/
public health nurses with positions in public health
are being asked to do more with less. Responding
BOX 17-1
Example of Public Health Policy
The Growing Healthier Report (Clark County Public
Health, 2012) is considered a living document and it
will change over time. One of the chapters, “Access
to Healthy Food,” is of high concern to Clark County,
Washington, where two-thirds of the adults and one-third
of 10th-graders are overweight or obese. Research
supports the idea that people’s eating choices are
strongly affected by the options available. So having
convenient healthy choices increases the likelihood of
making healthy choices. Likewise, being surrounded by
sources of unhealthy food leads to an increased risk
for obesity and chronic diseases. One goal related to the
“Access to Healthy Food” chapter is “protect resources
that enhance community food security” with a measura-
ble objective that says, “By 2015, the County will adopt
a local agricultural protection plan” (p. 10). Policies and
strategies to meet this objective include the following:
“3.1 Implement measures to increase the consumption
and/or sale of locally-produced food. 3.1.1 Support
and promote current farmers markets and development
of new markets. 3.1.2 Work with farmers to develop a
measure of healthy food distribution. 3.1.3 Require or in-
centivize community gardens or urban agriculture space
to accompany new development through dedications,
easements, or impact fees. 3.1.4 Establish community
gardens in existing parks and open spaces” (p. 10).
BOX 17-2
Geographical Information Systems
Geographical information systems (GISs) visually display,
analyze, and manipulate spatial data to locate geographi-
cal areas, potential hazards, water sources, and other im-
portant information. This digital technology helps the user
to understand trends and issues of concern by rendering
data visually, in the forms of maps, charts, histograms,
and a variety of reports. Having access to this type of
detailed data in visual format allows community/public
health nurses to intervene more quickly and accurately
to enhance public health and safety.
3921_Ch17_559-582 06/06/14 12:42 PM Page 577
by coordinating the local community’s response to
reports of suspected child abuse. This community-
based, interprofessional child maltreatment inter-
vention model offers population-focused nurse
practitioners the opportunity to prevent, recognize
early, and treat families that have experienced dys-
function and/or child maltreatment in order to
prevent some of the negative life impacts of these
early experiences. Services include interviews of
suspected victims of child abuse, medical evalua-
tions, mental health treatment and/or referrals,
provision or coordination of other victim services,
and individual- and community-specific needs.
This important work grew, in part, out of findings
from the Adverse Childhood Events (ACES) study
(Felitti et al., 1998). This study revealed the fol-
lowing: (1) more than half of study participants
had experienced at least one of the adverse events
studied (psychological, physical, or sexual abuse;
violence against mother; or living with household
members who were substance abusers, mentally ill
or suicidal, or ever imprisoned); (2) persons who
had experienced four or more categories of child-
hood exposure, compared to those who had expe-
rienced none, had a 4- to 12-fold increased health
risk for alcoholism, drug abuse, depression, and
suicide; (3) persons who had experienced four or
more categories of childhood exposure had a 2- to
4-fold increase in smoking, poor self-rated health,
greater than 50 sexual intercourse partners, and
sexually transmitted disease; and (4) persons who
had experienced four or more categories of child-
hood exposure had a 1.4- to 1.6-fold increase in
physical inactivity and severe obesity. Quality care
for families in the community can be enhanced
when rigid understandings of place and/or position
of nursing care are rethought and flexed according
to family and community needs.
Population-focused nurse practitioners often
fill positions in inpatient and outpatient settings
that focus on the care of groups of clients with
particular chronic illnesses, such as diabetes or
heart disease. These nurse practitioners provide
primary care to these clients, as well as offer indi-
vidual and group health education and other
health promotion activities. Their interest and ex-
pertise in a particular health condition lends itself
well to advocating for necessary resources for
their population of interest, and to becoming ac-
tive in health policy change on behalf of their
clients.
578 Nursing Care of Families in Clinical Areas
Family Case Study:
Jamison-Jensen Family
We visited the Jamison-Jensen family in their home. Stacie
Jensen is a 21-year-old high-school graduate, sometimes
girlfriend of Griff Jamison, and a first-time mom. Her daugh-
ter Danni was born at 27 weeks’ gestation with a birth
weight of 21⁄2 pounds. Danni remained in the neonatal
intensive care unit (NICU) for 10 weeks and encountered
many complications, including infection, respiratory compro-
mise, and vision difficulties. The local public health nurse
assigned to care for the family visited them briefly 1 week
before Danni’s hospital discharge to establish a relationship,
and to describe available in-home and clinic-based services.
One week after Danni’s arrival home the nurse visited
again. Stacie and Danni seemed to be settling into their
new routines at home fairly well, but concern about Danni’s
well-being had relegated Stacie to being a captive in her
own home. She was so worried about Danni getting sick
that she had asked friends not to visit at a time when she
needed all the support she could get. When asked about
supportive people in her life, she reported that Griff was
not around much. Because Stacie was unable to work, she
moved into a small house with her stepfather, mother, and
brother, but Stacie’s relationships with them were tenuous
and she yearned for a home of her own. Figure 17-2 pres-
ents the Jamison-Jensen family genogram. The home envi-
ronment was clean but very crowded with the oxygen and
monitoring equipment required for Danni’s care. Stacie was
overwhelmed by the physical care of Danni, and worried
that she would do something wrong. With these issues
so all-consuming, the idea of filling out the many forms
required for financial support and medical insurance to
which Danni was entitled was too much. Stacie had tears
in her eyes when she told the community health nurse,
“I don’t think I can do this anymore!” A plan of care for the
family utilized a family-as-client perspective in helping them
to develop much-needed community. Initial health appraisal
found an infant whose growth and development was on
target for her prematurity-corrected age, and who was re-
ceiving appropriate preventive well-child care and immu-
nizations from a local nurse practitioner. This provider-family
microsystem was stable and just required maintenance:
refer to Figure 17-3, the Jamison-Jenson family ecomap.
During the 13 weeks of Danni’s hospitalization, the NICU
become a supportive community for Stacie, and she
missed it. Because Stacie derived comfort from this health
care community, the nurse connected her to a support
group for parents of children with special needs. The nurse
also assessed the health of Griff and Stacie’s relationship.
3921_Ch17_559-582 06/06/14 12:42 PM Page 578
Families and Community/Public Health Nursing 579
27-week premie
Feeding 2–3 hr
Oxygen
Apnea monitor
Bret
12 yr
Griff
24 yr
Danni
10 wk
Stacie
21 yr
Unemployed5
Susan
44 yr
Randy
44 yr
Dan
45 yr
FIGURE 17-2 Jamison-Jensen family genogram.
Speech
therapist
Uninsured
filing for
medicaid
Pediatrician
Community
immunization
clinic
Stacie
Danni
Community
health nurseStacie’s
mother and
stepfather
Stacie’s
friends
NICU family
support
group
NICU
nurses
Physical
therapist
Ophthalmologist
Griff
FIGURE 17-3 Jamison-Jensen family ecomap.
(continued)
3921_Ch17_559-582 06/06/14 12:42 PM Page 579
580 Nursing Care of Families in Clinical Areas
With Danni’s health and development progressing nicely
at 6 months of age, Griff felt more comfortable with sup-
porting Stacie and caring for Danni. The relationship
seemed to be a nurturing one, so the nurse helped the
parents arrange respite care so that they had some time
alone as a couple. Stacie knew that their family needed to
move from her parents’ home and start life on their own,
but she felt hopeless about opportunities for work. The
nurse answered questions about social and financial serv-
ices that were available to help the family, and supported
and encouraged Stacie and Griff as they completed the
necessary paperwork and interviews. Helping this family
move into their own home required creativity. Ultimately,
they chose to move in with another family with a young
infant so that child care issues could be shared. The family,
with the help of the nurse, entered this new extended-
family microsystem with a better understanding of the
importance of communication in building stable relation-
ships. With Danni’s health much improved at year’s end, the
nurse and the family began the process of terminating the
nurse-client relationship.
Setting: Home.
Health Promotion/Standard:
• Create supportive environment.
Concepts/Principles Used By Nurse:
• Access to resources
• Determinant of health (employment, housing)
• Nurse-client relationship
Role Played By Nurse:
• Advocate
• Support
• Facilitate access to support and resource
private health agencies, schools, and
occupational sites.
■ Community/public health nursing roles vary
according to whether the nurse is focusing on
the family as the unit of care in the context of
the community, or focusing on the health of
the community with families being a subunit.
■ Community/public health nurses aim to meet
the holistic needs of families and communi-
ties while targeting prioritized health needs.
■ Rather than blaming families for their
situations, community/public health nurses
consider how social, political, economic,
and environmental conditions affect families’
health choices and outcomes.
■ Family interventions in the community are
targeted toward primary, secondary, and ter-
tiary prevention. The nurse-family relation-
ship is central in interventions at all three
levels of prevention.
■ Interventions for families are planned, imple-
mented, and evaluated from a health promo-
tion perspective.
■ Using a combination of relational collabora-
tion and health promotion strategies and
principles, community/public health nurses
strive to partner with families to assist with
all levels of healthy change.
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Victorian Order of Nurses (VON) Canada. (2009). About
VON. Retrieved from http://www.von.ca/en/about/
default.aspx
Weman, K., & Fagerberg, I. (2006). Registered nurses working
together with family members of older people. Journal of
Clinical Nursing, 15, 281–289.
William, L. (2008). Developing personal skills: Empowerment.
In A. R. Vollman, E. T. Anderson, & J. McFarlane (Eds.),
Canadian community as partner: Theory and multidisciplinary
practice (pp. 94–112). Philadelphia, PA: Wolters Kluwer/
Lippincott Williams & Wilkins.
World Health Organization. (1948). Constitution of the World
Health Organization. Geneva, Switzerland: Author.
World Health Organization. (1978). Declaration of Alma-Ata.
International Conference on Primary Health Care, Alma-Ata,
USSR, September 6–12. Geneva, Switzerland: Author.
World Health Organization. (1986). Ottawa charter of health
promotion. Geneva, Switzerland: Author.
World Health Organization. (2009). Social determinants of health.
Retrieved from http://www.who.int/social_determinatns/en
World Health Organization. (2012). World conference on social
determinants of health. Retrieved from http://www.who.int/
sdhconference/en
Young, L. E., & Wharf Higgins, J. (2012). Concepts of health.
In L. L. Stamler & L. Yiu (Eds.), Community health nursing:
A Canadian perspective (3rd ed., pp. 76–88). Toronto, ON:
Pearson Prentice Hall.
Zahner, S. J., & Vandermause, R. (2003). Local health depart-
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582 Nursing Care of Families in Clinical Areas
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583
Family Systems Stressor-
Strength Inventory (FS3I)
a p p e n d i x A
INSTRUCTIONS FOR
ADMINISTRATION
The Family Systems Stressor-Strength Inventory
(FS3I) is an assessment and measurement instrument
intended for use with families (see Chapter 3 for the-
ory behind the approach and Chapter 13 for an ex-
ample of a nurse using it with a family). It focuses on
identifying stressful situations occurring in families
and the strengths families use to maintain healthy
family functioning. Each family member is asked to
complete the instrument on an individual form be-
fore an interview with the clinician. Questions can
be read to members unable to read.
After completion of the instrument, the clinician
evaluates the family on each of the stressful situa-
tions (general and specific) and the strengths they
possess. This evaluation is recorded on the family
member form.
The clinician records the individual family mem-
ber’s score and the clinician perception score on the
Quantitative Summary. A different color code is
used for each family member. The clinician also
completes the Qualitative Summary, synthesizing
the information gleaned from all participants.
Clinicians can use the Family Care Plan to priori-
tize diagnoses, set goals, develop prevention and
intervention activities, and evaluate outcomes.
Shirley May Harmon Hanson
Karen B. Mischke
Family Name Date
Family Member(s) Completing Assessment
Ethnic Background(s)
Religious Background(s)
Referral Source
Interviewer
(continued)
3921_APP-A_583-598 05/06/14 10:47 AM Page 583
584 Family Systems Stressor-Strength Inventory (FS3I)
Family Relationship Education
Members in Family Age Marital Status (highest degree) Occupation
1.
2.
3.
4.
5.
6.
Family’s current reasons for seeking assistance:
Part I: Family Systems Stressors (General)
DIRECTIONS: Each of 25 situations/stressors listed here deals with some aspect of normal family
life. They have the potential for creating stress within families or between families and the world
in which they live. We are interested in your overall impression of how these situations affect your
family life. Please circle a number (0 through 5) that best describes the amount of stress or ten-
sion they create for you.
CLINICIAN
FAMILY PERCEPTION SCORE PERCEPTION
DOES LITTLE MEDIUM HIGH
STRESSORS NOT APPLY STRESS STRESS STRESS SCORE
1. Family member(s) feel 0 1 2 3 4 5 ________
unappreciated
2. Guilt for not accomplishing 0 1 2 3 4 5 ________
more
3. Insufficient “me” time 0 1 2 3 4 5 ________
4. Self-image/self-esteem/ 0 1 2 3 4 5 ________
feelings of unattractiveness
5. Perfectionism 0 1 2 3 4 5 ________
6. Dieting 0 1 2 3 4 5 ________
7. Health/illness 0 1 2 3 4 5 ________
8. Communication with children 0 1 2 3 4 5 ________
9. Housekeeping standards 0 1 2 3 4 5 ________
10. Insufficient couple time 0 1 2 3 4 5 ________
11. Insufficient family playtime 0 1 2 3 4 5 ________
3921_APP-A_583-598 05/06/14 10:47 AM Page 584
Family Systems Stressor-Strength Inventory (FS3I) 585
CLINICIAN
FAMILY PERCEPTION SCORE PERCEPTION
DOES LITTLE MEDIUM HIGH
STRESSORS NOT APPLY STRESS STRESS STRESS SCORE
12. Children’s behavior/
discipline/sibling fighting 0 1 2 3 4 5 ________
13. Television 0 1 2 3 4 5 ________
14. Overscheduled family 0 1 2 3 4 5 ________
calendar
15. Lack of shared responsibility 0 1 2 3 4 5 ________
in the family
16. Moving 0 1 2 3 4 5 ________
17. Spousal relationship 0 1 2 3 4 5 ________
(communication,
friendship, sex)
18. Holidays 0 1 2 3 4 5 ________
19. In-laws 0 1 2 3 4 5 ________
20. Teen behaviors 0 1 2 3 4 5 ________
(communication,
music, friends, school)
21. New baby 0 1 2 3 4 5 ________
22. Economics/finances/ 0 1 2 3 4 5 ________
budgets
23. Unhappiness with work 0 1 2 3 4 5 ________
situation
24. Overvolunteerism 0 1 2 3 4 5 ________
25. Neighbors 0 1 2 3 4 5 ________
Additional Stressors:
Family Remarks:
Clinician: Clarification of stressful situations/concerns with family members.
Prioritize in order of importance to family members:
3921_APP-A_583-598 05/06/14 10:47 AM Page 585
586 Family Systems Stressor-Strength Inventory (FS3I)
Part II: Family Systems Stressors (Specific)
DIRECTIONS: The following 12 questions are designed to provide information about your specific
stress-producing situation/problem or area of concern influencing your family’s health. Please cir-
cle a number (1 through 5) that best describes the influence this situation has on your family’s life
and how well you perceive your family’s overall functioning.
The specific stress-producing situation/problem or area of concern at this time is:
CLINICIAN
FAMILY PERCEPTION SCORE PERCEPTION
STRESSORS LITTLE MEDIUM HIGH SCORE
1. To what extent is your family bothered by
this problem or stressful situation? (e.g.,
effects on family interactions, communication
among members, emotional and social
relationships) 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
2. How much of an effect does this stressful
situation have on your family’s usual pattern
of living? (e.g., effects on lifestyle patterns
and family developmental task) 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
3. How much has this situation affected your
family’s ability to work together as a family
unit? (e.g., alteration in family roles,
completion of family tasks, following
through with responsibilities) 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
3921_APP-A_583-598 05/06/14 10:47 AM Page 586
Family Systems Stressor-Strength Inventory (FS3I) 587
CLINICIAN
FAMILY PERCEPTION SCORE PERCEPTION
STRESSORS LITTLE MEDIUM HIGH SCORE
Has your family ever experienced a similar
concern in the past?
1. YES If YES, complete question 4
2. NO If NO, complete question 5
4. How successful was your family in dealing
with this situation/problem/concern in the
past? (e.g., workable coping strategies
developed, adaptive measures useful,
situation improved) 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
5. How strongly do you feel this current
situation/problem/concern will affect your
family’s future? (e.g., anticipated
consequences) 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
6. To what extent are family members able to
help themselves in this present situation/
problem/concern? (e.g., self-assistive efforts,
family expectations, spiritual influence, family
resources) 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
7. To what extent do you expect others to help
your family with this situation/problem/
concern? (e.g., what roles would helpers play;
how available are extra-family resources) 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
(continued)
3921_APP-A_583-598 05/06/14 10:47 AM Page 587
588 Family Systems Stressor-Strength Inventory (FS3I)
STRESSORS POOR SATISFACTORY EXCELLENT SCORE
8. How would you rate the way your family
functions overall? (e.g., how your family
members relate to each other and to larger
family and community) 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
9. How would you rate the overall physical
health status of each family member by
name? (Include yourself as a family
member; record additional names on back.)
a. ______ 1 2 3 4 5 ________
b. ______ 1 2 3 4 5 ________
c. ______ 1 2 3 4 5 ________
d. ______ 1 2 3 4 5 ________
e. ______ 1 2 3 4 5 ________
10. How would you rate the overall physical
health status of your family as a whole? 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
11. How would you rate the overall mental
health status of each family member by
name? (Include yourself as a family
member; record additional names on back.)
a. ______ 1 2 3 4 5 ________
b. ______ 1 2 3 4 5 ________
c. ______ 1 2 3 4 5 ________
d. ______ 1 2 3 4 5 ________
e. ______ 1 2 3 4 5 ________
12. How would you rate the overall mental
health status of your family as a whole? 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
3921_APP-A_583-598 05/06/14 10:47 AM Page 588
Family Systems Stressor-Strength Inventory (FS3I) 589
Part III: Family Systems Strengths
DIRECTIONS: Each of the 16 traits/attributes listed below deals with some aspect of family life
and its overall functioning. Each one contributes to the health and well-being of family members
as individuals and to the family as a whole. Please circle a number (0 through 5) that best de-
scribes the extent to which the trait applies to your family.
CLINICIAN
FAMILY PERCEPTION SCORE PERCEPTION
DOES
MY FAMILY NOT APPLY SELDOM USUALLY ALWAYS SCORE
1. Communicates and listens to
one another 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
2. Affirms and supports one
another 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
3. Teaches respect for others 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
4. Develops a sense of trust in
members 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
5. Displays a sense of play and
humor 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
(continued)
3921_APP-A_583-598 05/06/14 10:47 AM Page 589
590 Family Systems Stressor-Strength Inventory (FS3I)
CLINICIAN
FAMILY PERCEPTION SCORE PERCEPTION
DOES
MY FAMILY NOT APPLY SELDOM USUALLY ALWAYS SCORE
6. Exhibits a sense of shared
responsibility 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
7. Teaches a sense of right and
wrong 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
8. Has a strong sense of family in
which rituals and traditions
abound 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
9. Has a balance of interaction
among members 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
10. Has a shared religious core 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
11. Respects the privacy of one
another 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
3921_APP-A_583-598 05/06/14 10:47 AM Page 590
Family Systems Stressor-Strength Inventory (FS3I) 591
CLINICIAN
FAMILY PERCEPTION SCORE PERCEPTION
DOES
MY FAMILY NOT APPLY SELDOM USUALLY ALWAYS SCORE
12. Values service to others 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
13. Fosters family table time and
conversation 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
14. Shares leisure time 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
15. Admits to and seeks help
with problems 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
16a. How would you rate the
overall strengths that exist
in your family? 0 1 2 3 4 5 ________
Family Remarks:
Clinician Remarks:
16b. Additional family strengths:
16c. Clinician: Clarification of family strengths with individual members:
Source: Hanson, S. M. H. (2001). Family health care nursing: Theory, practice, and research (2nd ed., pp. 425–437). Philadelphia, PA:
F. A. Davis.
3921_APP-A_583-598 05/06/14 10:47 AM Page 591
592 Family Systems Stressor-Strength Inventory (FS3I)
Perception Score. Color-code to differentiate
family members. Record additional stressors
and family remarks in Part I, Qualitative Sum-
mary: Family and Clinician Remarks.
Part II: Family Systems Stressors (Specific)
Add scores from questions 1 through 8, 10, and 12
and calculate a numerical score for Family Systems
Stressors (Specific). Ratings are from 1 (most pos-
itive) to 5 (most negative). Questions 4, 6, 7, 8, 10
and 12 are reverse scored.* Total scores range from
10 through 50.
Family Systems Stressor Score (Specific)
(10) × 1 =
Graph score on Quantitative Summary, Family
Systems Stressors (Specific) Family Member Per-
ception Score. Color-code to differentiate family
members.
Summarize data from questions 9 and 11 (reverse
scored) and record family remarks in Part II, Qual-
itative Summary: Family and Clinician Remarks.
Part III: Family Systems Strengths
Add scores from questions 1 through 16 and calcu-
late a numerical score for Family Systems Strengths.
Ratings are from 1 (seldom) to 5 (always). The Does
Not Apply (0) responses are omitted from the
calculations. Total Scores range from 16 to 80.
Family Systems Strengths Score
(16) × 1 =
Graph score on Quantitative Summary: Family
Systems Strengths, Family Member Perception
Score. Record additional family strengths and
family remarks in Part III, Qualitative Summary:
Family and Clinician Remarks.
FAMILY SYSTEMS STRESSOR-
STRENGTH INVENTORY (FS3I)
SCORING SUMMARY
Section 1: Family Perception Scores
Instructions For Administration
The Family Systems Stressor-Strength Inventory
(FS3I) Scoring Summary is divided into two sections:
Section 1, Family Perception Scores, and Section 2,
Clinician Perception Scores. These two sections are
further divided into three parts: Part I, Family Sys-
tems Stressors (General); Part II, Family Systems
Stressors (Specific); and Part III, Family Systems
Strengths. Each part contains a Quantitative Sum-
mary and a Qualitative Summary.
Quantifiable family and clinician perception
scores are both graphed on the Quantitative Sum-
mary. Each family member has a designated color
code. Family and clinician remarks are both
recorded on the Quantitative Summary. Quantita-
tive Summary scores, when graphed, suggest a level
for initiation of prevention/intervention modes:
Primary, Secondary, and Tertiary. Qualitative
Summary information, when synthesized, con-
tributes to the development and channeling of the
Family Care Plan.
Part I: Family Systems Stressors (General)
Add scores from questions 1 to 25 and calculate an
overall numerical score for Family Systems Stres-
sors (General). Ratings are from 1 (most positive)
to 5 (most negative). The Does Not Apply (0) re-
sponses are omitted from the calculations. Total
scores range from 25 to 125.
Family Systems Stressor Score (General)
(25) × 1 =
Graph score on Quantitative Summary, Family
Systems Stressors (General), Family Member
*Reverse scoring:
Question answered as (1) is scored 5 points.
Question answered as (2) is scored 4 points.
Question answered as (3) is scored 3 points.
Question answered as (4) is scored 2 points.
Question answered as (5) is scored 1 point.
3921_APP-A_583-598 05/06/14 10:47 AM Page 592
Family Systems Stressor-Strength Inventory (FS3I) 593
Family Systems Stressor Score (Specific)
(10) × 1 =
Graph score on Quantitative Summary, Family
Systems Stressors (Specific), Clinician Perception
Score. Summarize data from questions 9 and
11 (reverse order) and record clinician remarks
in Part II, Qualitative Summary: Family and
Clinician Remarks.
Part III: Family Systems Strengths
Add scores from questions 1 through 16 and calcu-
late a numerical score for Family Systems Strengths.
Ratings are from 1 (seldom) to 5 (always). The Does
Not Apply (0) responses are omitted from the cal-
culations. Total scores range from 16 to 80.
Family Systems Strengths Score
(16) × 1 =
Graph score on Quantitative Summary, Family
Systems Strengths, Clinician Perception Score.
Record clinicians’ clarification of family strengths
in Part III, Qualitative Summary: Family and
Clinician Remarks.
Section 2: Clinician Perception Scores
Part I: Family Systems Stressors (General)*
Add scores from questions 1 through 25 and calcu-
late an overall numerical score for Family Systems
Stressors (General). Ratings are from 1 (most pos-
itive) to 5 (most negative). The Does Not Apply (0)
responses are omitted from the calculations. Total
scores range from 25 to 125.
Family systems Stressor Score (General)
(25) × 1 =
Graph score on Quantitative Summary, Family
Systems Stressors (General) Clinician Perception
Score. Record clinicians’ clarification of general
stressors in Part I, Qualitative Summary: Family
and Clinician Remarks.
Part II: Family Systems Stressors (Specific)
Add scores from questions 1 through 8, 10, 12 and
calculate a numerical score for Family Systems Stres-
sors (Specific). Ratings are from 1 (most positive) to
5 (most negative). Questions 4, 6, 7, 8, 10, and 12 are
reverse scored.* Total scores range from 10 to 50.
Source: Mischke-Berkey, K., & Hanson, S. M. H. (1991). Pocket guide to family assessment and intervention. St. Louis, MO: Mosby.
*Reverse scoring:
Question answered as (1) is scored 5 points.
Question answered as (2) is scored 4 points.
Question answered as (3) is scored 3 points.
Question answered as (4) is scored 2 points.
Question answered as (5) is scored 1 point.
3921_APP-A_583-598 05/06/14 10:47 AM Page 593
594 Family Systems Stressor-Strength Inventory (FS3I)
Quantitative Summary of Family Systems Stressors: General and Specific
Family and Clinician Perception Scores
DIRECTIONS: Graph the scores from each family member inventory by placing an “X” at the
appropriate location. (Use first name initial for each different entry and different color code for
each family member.)
FAMILY SYSTEMS STRESSORS FAMILY SYSTEMS STRESSORS
(GENERAL) (SPECIFIC)
SCORES FOR FAMILY MEMBER CLINICIAN SCORES FOR FAMILY MEMBER CLINICIAN
WELLNESS PERCEPTION PERCEPTION WELLNESS PERCEPTION PERCEPTION
AND STABILITY SCORE SCORE AND STABILITY SCORE SCORE
5.0‡
4.8
4.6
4.4
4.2
4.0
3.8
3.6
3.4
3.2
3.0
2.8
2.6
2.4†
2.2
2.0
1.8
1.6
1.4
1.2
1.0*
5.0
4.8
4.6
4.4
4.2
4.0
3.8
3.6
3.4
3.2
3.0
2.8
2.6
2.4
2.2
2.0
1.8
1.6
1.4
1.2
1.0
*PRIMARY Prevention/Intervention Mode: Flexible Line 1.0–2.3
†SECONDARY Prevention/Intervention Mode: Normal Line 2.4–3.6
‡TERTIARY Prevention/Intervention Mode: Resistance Lines 3.7–5.0
Breakdowns of numerical scores for stressor penetration are suggested values.
3921_APP-A_583-598 05/06/14 10:47 AM Page 594
Family Systems Stressor-Strength Inventory (FS3I) 595
*PRIMARY Prevention/Intervention Mode: Flexible Line 1.0–2.3
†SECONDARY Prevention/Intervention Mode: Normal Line 2.4–3.6
‡TERTIARY Prevention/Intervention Mode: Resistance Lines 3.7–5.0
Breakdowns of numerical scores for stressor penetration are suggested values.
Family Systems Strengths Family and Clinician Perception Scores
DIRECTIONS: Graph the scores from the inventory by placing an “X” at the appropriate location
and connect with a line. (Use first name initial for each different entry and different color code for
each family member.)
FAMILY SYSTEMS STRENGTHS
SUM OF STRENGTHS
AVAILABLE FOR PREVENTION/ FAMILY MEMBER CLINICIAN
INTERVENTION MODE PERCEPTION SCORE PERCEPTION SCORE
5.0‡
4.8
4.6
4.4
4.2
4.0
3.8
3.6
3.4
3.2
3.0
2.8
2.6
2.4†
2.2
2.0
1.8
1.6
1.4
1.2
1.0*
3921_APP-A_583-598 05/06/14 10:47 AM Page 595
596 Family Systems Stressor-Strength Inventory (FS3I)
QUALITATIVE SUMMARY FAMILY AND CLINICIAN REMARKS
Part I: Family Systems Stressors (General)
Summarize general stressors and remarks of family and clinician. Prioritize stressors according to
importance to family members.
Part II: Family Systems Stressors (Specific)
A. Summarize specific stressors and remarks of family and clinician.
B. Summarize differences (if discrepancies exist) between how family members and clinicians
view effects of stressful situation on family.
C. Summarize overall family functioning.
D. Summarize overall significant physical health status for family members.
E. Summarize overall significant mental health status for family members.
Part III: Family Systems Strengths
Summarize family systems strengths and family and clinician remarks that facilitate family health
and stability.
3921_APP-A_583-598 05/06/14 10:47 AM Page 596
Family Systems Stressor-Strength Inventory (FS3I) 597
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3921_APP-A_583-598 05/06/14 10:47 AM Page 597
3921_APP-A_583-598 05/06/14 10:47 AM Page 598
599
The Friedman Family
Assessment Model
(Short Form)
a p p e n d i x B
The following Friedman Family Assessment Short
Form is useful as a quick instrument to help high-
light areas of family function that will need more
exploration. Before using the following guidelines
in completing family assessments, two words of
caution are noted: First, not all areas included
below will be germane for each of the families vis-
ited. The guidelines are comprehensive and allow
depth when probing is necessary. The student
should not feel that every subarea needs be covered
when the broad area of inquiry poses no problems
to the family or concern to the health worker. Sec-
ond, by virtue of the interdependence of the family
system, one will find unavoidable redundancy. For
the sake of efficiency, the assessor should try not to
repeat data, but to refer the reader back to sections
where this information has already been described.
IDENTIFYING DATA
1. Family Name
2. Address and Phone
3. Family Composition: The Family
Genogram
4. Type of Family Form
5. Cultural (Ethnic) Background
6. Religious Identification
7. Social Class Status
8. Social Class Mobility
DEVELOPMENTAL STAGE
AND HISTORY OF FAMILY
9. Family’s Present Developmental Stage
10. Extent of Family Developmental Tasks
Fulfillment
11. Nuclear Family History
12. History of Family of Origin of Both
Parents
ENVIRONMENTAL DATA
13. Characteristics of Home
14. Characteristics of Neighborhood and
Larger Community
15. Family’s Geographical Mobility
16. Family’s Associations and Transactions
With Community
FAMILY STRUCTURE
17. Communication Patterns
Extent of Functional and Dysfunctional Com-
munication (types of recurring patterns)
Extent of Emotional (Affective) Messages and
How Expressed
Characteristics of Communication Within
Family Subsystems
3921_APP-B_599-602 05/06/14 10:47 AM Page 599
Extent of Congruent and Incongruent
Messages
Types of Dysfunctional Communication
Processes Seen in Family
Areas of Closed Communication
Familial and Contextual Variables Affecting
Communication
18. Power Structure
Power Outcomes
Decision-making Process
Power Bases
Variables Affecting Family Power
Overall Family System and Subsystem Power
(Family Power Continuum Placement)
19. Role Structure
Formal Role Structure
Informal Role Structure
Analysis of Role Models (optional)
Variables Affecting Role Structure
20. Family Values
Compare the family to American core
values or family’s reference group values
and/or identify important family values
and their importance (priority) in family.
Congruence Between the Family’s Values and
the Family’s Reference Group or Wider
Community
Disparity in Value Systems
Presence of Value Conflicts in Family
Effect of the Above Values and Value Conflicts
on Health Status of Family
FAMILY FUNCTIONS
21. Affective Function
Mutual Nurturance, Closeness, and
Identification
Separateness and Connectedness
Family’s Need-Response Patterns
22. Socialization Function
Family Child-rearing Practices
Adaptability of Child-rearing Practices for
Family Form and Family’s Situation
Who Is (Are) Socializing Agent(s) for
Child(ren)?
Value of Children in Family
Cultural Beliefs That Influence Family’s
Child-rearing Patterns
Social Class Influence on Child-rearing Patterns
Estimation About Whether Family Is at Risk
for Child-rearing Problems and If So,
Indication of High-Risk Factors
Adequacy of Home Environment for Children’s
Needs to Play
23. Health Care Function
Family’s Health Beliefs, Values, and Behavior
Family’s Definitions of Health-Illness and Its
Level of Knowledge
Family’s Perceived Health Status and Illness
Susceptibility
Family’s Dietary Practices
■ Adequacy of family diet (recommended
3-day food history record)
■ Function of mealtimes and attitudes
toward food and mealtimes
■ Shopping (and its planning) practices
■ Person(s) responsible for planning,
shopping, and preparation of meals
Sleep and Rest Habits
Physical Activity and Recreation Practices
Family’s Therapeutic and Recreational
Drug, Alcohol, and Tobacco Practices
Family’s Role in Self-care Practice
Medically Based Preventive Measures
(physicals, eye and hearing tests,
immunizations, dental care)
Complementary and Alternative Therapies
Family Health History (both general and
specific diseases—environmentally
and genetically related)
Health Care Services Received
Feelings and Perceptions Regarding Health
Services
Emergency Health Services
Source of Payments for Health and Other
Services
Logistics of Receiving Care
FAMILY STRESS, COPING,
AND ADAPTATION
24. Family Stressors, Strengths, and
Perceptions
Stressors Family Is Experiencing
Strengths That Counterbalance Stressors
Family’s Definition of the Situation
600 The Friedman Family Assessment Model (Short Form)
3921_APP-B_599-602 05/06/14 10:47 AM Page 600
25. Family Coping Strategies
How the Family Is Reacting to the Stressors
Extent of Family’s Use of Internal Coping
Strategies (past/present)
Extent of Family’s Use of External Coping
Strategies (past/present)
Dysfunctional Coping Strategies Utilized
(past/present; extent of use)
26. Family Adaptation
Overall Family Adaptation
Estimation of Whether Family Is in Crisis
27. Tracking Stressors, Coping, and
Adaptation Over Time
The Friedman Family Assessment Model (Short Form) 601
Source: Friedman, M. M., Bowden, V. R., & Jones, E. G. (2003). Family
nursing: Research, theory, and practice (5th ed., pp. 593–594). Upper Saddle
River, NJ: Prentice Hall.
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3921_APP-B_599-602 05/06/14 10:47 AM Page 602
603
A
AARP, 488
Aboriginal people, 171
linguistic diversity, 172
in poverty, 170
Abortion, 22, 38
social policy and, 155
Abuse, 175–177, 335, 363
child, 406–408
Access to health care, 154, 177–178
Accidents, automobile, 150
Accommodating management style,
243–244
Activities of daily living (ADLs), 42, 478,
481, 488, 493–494
assessment, 504
Acute Care for the Elderly (ACE) Model,
498
Acute care settings, 434
advance directives in, 448–449
assessments in, 109–110
brief therapeutic conversations in, 126
cardiopulmonary resuscitation in,
449–450
case study, 453–471
communication with families in,
443–444
Do Not Resuscitate (DNR) orders in,
448, 450
elder care, 503–505
end-of-life family care in, 446–453
families in, 434–441
family interventions at discharge from,
445–446
family needs during discharge from,
444–445
intensive care unit (ICU), 300, 304,
434–441
life-sustaining therapies withdrawal or
withholding in, 450–453
medical-surgical units, 441–446
organ donation and, 453
visiting policy, 437–438, 442–443
Acute illness
acute onset of chronic illness and,
87–88
during childbearing, 371
Adaptation Model, 72
Adaptation to chronic illness, family,
251–252
Adaptive model of family health, 208
Ad hoc family interpreters, 110
ADLs. See Activities of daily living (ADLs)
Administration on Aging, 155
Adolescents, 150
with chronic illness transition to adult
services, 256–258
as emancipated minors, 417
family meals and, 223
genetic testing in, 194
risks, 408–409
sexual activity among, 408–409
Adoption, 48–51, 367–369
Adult foster care, 493
Advance care planning, 295–296
Advance directives, 448–449
Adverse Childhood Experiences Study,
329, 578
Advocate, nurse as, 14, 146
in palliative and end-of-life care,
295–297
social policy and, 156–159
Affective functions of the family, 23–24
Affordable Care Act (ACA), 139, 157, 409,
574
After-school activities, 403–404
Aging. See also Elder care; Elderly, the
case study, 505–514
demographic changes, 38–39, 480–482
diversity of experiences in, 477–478
families, profile of, 480–487
family ambivalence and conflict in,
486–487
family caregiving and, 487–496
family relationships and, 483–487
family structure and, 482–483
intergenerational relationships and,
485–486
life course perspective, 478–480,
505–514
population policy, 154
same-generation relationships and,
483–485
siblings and, 484–485
social-emotional, cognitive, and physical
dimensions of individual development
and, 392–396
Aging and Disability Resource Centers
(ADRCs), 496
AHRC. See Assisted Human Reproduction
Canada (AHRC)
Akathisia, 535
Alcohol use, 149–150, 176–177, 543–544
by adolescents, 150
binge drinking, 149, 239
Alma Ata Declaration on Primary Health
Care, 563
Alzheimer’s disease, 189, 493, 539
American Academy of Pediatrics (AAP),
152, 216, 408
American Association of Caregiving
Youth, 253
American Association of Critical Care
Nurses (AACN), 437–438
American College of Critical Care
Medicine, 434, 438
American Community Survey, 35, 39
American Lung Association, 145
American Medical Association (AMA), 406
American Nurses Association (ANA), 4,
157–158, 438, 449
American Psychiatric Association (APA),
521
American Psychological Association (APA),
322
Americans with Disabilities Act, 151
America’s Promise Alliance, 409
ANA. See American Nurses Association
(ANA)
Anticipatory guidance, 222
Appraisal support for families with
chronically ill member, 260
Area Agency on Aging (AAAs), 496
Arthritis Foundation, 497
ARTs. See Assisted reproductive
technologies (ARTs)
Ashkenazi Jews, 200
Assessments. See also Interventions;
specific assessment models
activities of daily living (ADLs), 504
in acute care settings, 109–110
caregiving, 491–496
characteristics and selection, 115–116
community-based appointments for,
108–109
community/public health nursing,
574–577
depression, 505
engaging families in care, 107–111
evaluation and, 127–128
family-centered meetings and care
conferences in, 110–111
family functions and, 22–25
family health literacy, 120
Family Health Model, 248
family nursing, 106–111
family processes and, 25–30
family structure and, 20–22
genetic family history, 197–199
genograms and ecomaps, 116–120
interpreters used in, 110
models and instruments, 111–120
nurse and family reflection in, 129–133
palliative and end-of-life care, 286–305
preconception, 199–200
PTSD, 336–337
shared decision making and, 123–125
Assisted Human Reproduction Canada
(AHRC), 48
Assisted living facilities, 493, 498–500
Assisted reproductive technologies
(ARTs), 47–48, 367
Association of Community Health
Nursing Educators (ACHNE), 564
Asthma, 145
policy, 153
Attachment, 325–326, 362, 374
Attention-deficit hyperactivity disorder
(ADHD), 413, 533, 541–542
Authoritarian parenting style, 401–402
Authoritative parenting style, 401, 406
Automobile accidents, 150
INDEX
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Autosomal recessive conditions, 198
Avoiders, 6
B
Baby boomers, 37
Balanced families, 7
Behavioral Risk Factor Surveillance
System (BRFSS), 239
Behavioral Systems Model for Nursing,
70, 72
Beliefs and Illness Model, 123
Bereavement care, 285, 302–303
when death is sudden or traumatic,
304–305
Bidirectional interactions, 85
Binge drinking, 149, 239
Bioecological Systems Theory, 83–87,
100–101, 213–219
aging and, 478–480
Bipolar disorder, 532, 533, 538–539
case study, 545–551
Birth control, 46
Blended families, 56
Board and care homes, 493
Body mass index (BMI), 148
Boomerang children, 43
Boundaries, Family Systems Theory on,
77–78
Brain development and early trauma,
328–329
Breast cancer, 188–189, 194
Breastfeeding, 360–361, 373–374
Breckinridge, Mary, 16, 157
Bronfenbrenner, Urie, 83–85, 323
C
Calgary Family Assessment Model
(CFAM), 111, 113–115
Calgary Family Intervention Model
(CFIM), 111
Canada
aging population in, 38–39
alcohol use in, 150
cohabitation in, 44, 55
in context, 169–173
definition of family in, 147
economic burden of chronic disease in,
240
economic changes in, 36–37
economic diversity, 170–171
ethnocultural diversity, 171–172
family as safe and nurturing in,
175–177
fathering in, 54
fertility rate, 45–47
geographical diversity, 169–170
health care context, 177–178
health care policy in, 140–141
health resources in, 147
heterosexual nuclear families as norm
in, 173–174
how family is understood in, 173–177
ideas of motherhood and women in,
174–175
illegal drug use in, 150
immigration to, 39–40
income gap in, 143
life expectancy in, 38–39
linguistic diversity, 172
living arrangements in, 40–45
multigenerational households in,
41–42
obesity in, 148, 149
parental leave policies, 376–377
poverty in, 143, 170
religious diversity, 172–173
same-sex couple families in, 55
school nursing in, 152–153
single mothers in, 54
stepfamilies in, 56
tobacco use in, 149
Canadian Addiction Survey, 176
Canadian Centre for Policy Alternatives
(CCPA), 153
Canadian Child Welfare Research
Portal, 170–171
Canadian Community Health Nursing
Professional Practice Model, 563
Canadian Community Health Survey,
170, 176, 217
Canadian Council on Learning, 146
Canadian Hospice Palliative Care
Association, 295–296
Canadian Incidence Study (CIS), 176
Canadian Nurses Association (CNA),
158
Canadian Tobacco Use Monitoring
Survey (CTUMS), 239
Cancer, 146
deaths from, 239
genetics and, 188–189, 194
Cardiopulmonary resuscitation, 449–450
Cardiovascular disease, 146, 239
Career, family, 390, 398
Caregiving
chronic illness and family, 252–256
family, 487–496
grandparents caring for grandchildren,
490
for individuals with mental health
conditions, 526–533
nursing role in assessing and
supporting, 491–496
palliative and end-of-life care and,
282–284
roles, 488–491
self-care talk for family, 126–127
Care Model, 141–142
Carrier genetic tests, 190
Case-finder, nurse as, 14
Case manager, nurse as, 15
CDC. See Centers for Disease Control
and Prevention (CDC)
Cell phones in the ICU, 438
Centers for Disease Control and Prevention
(CDC), 214, 239, 329, 573
Centers for Medicare and Medicaid
Services, 139–140
CFAM. See Calgary Family Assessment
Model (CFAM)
CFIM. See Calgary Family Intervention
Model (CFIM)
Change Theory, 71
Childbearing. See also Parenting
adjusting to changed communication
patterns after, 362–363
adoption and, 367–369
arranging space for a child and,
358–359
assisted reproductive technologies
(ARTs) and, 47–48
assuming mutual responsibility for child
care and nurturing after, 360–362
complications, 48
establishing family rituals and routines
after, 365
facilitating role learning of family
members during and after, 362
family case studies, 377–381
Family Developmental and Life Cycle
Theory and, 358–366
family nursing, 355–356
family nursing of postpartum families,
372–376
family stressors, 366–371
family systems theory and, 357–358
family transitions and, 365–366
feeding management and, 373–374
fertility rate and, 22, 45–47
financing child rearing and, 359–360
high-risk, 371–372
historical perspective, 354–355
infertility and, 366–367
maintaining family members’ motivation
and morale through, 364–365
perinatal loss and, 369–370
planning for subsequent children and,
363
policy implications for family nursing
in, 376–377
postpartum depression and, 375–376
preconception assessment and education
prior to, 199–200
realigning intergenerational patterns
and, 363–364
single mothers and, 34, 46, 51–54
social policy and, 155–156
theory-guided, evidence-based
nursing, 356–366
threats to health during, 371–372
Child care, 403–404
Child care Resource and Referral
Services, 404
Child health nursing
care of children with chronic illness and
their families in, 410–415
case study, 420–426
child care, after-school activities, and
children’s health promotion and,
403–404
604 Index
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Index 605
concepts of, 390–398
consent in, 415–418
elements of family-centered care and,
388–390
family career and, 390
family stages and, 390–391
family tasks and, 391
in the hospital, 418–420
identifying health risks and teaching
prevention strategies in, 404–410
nursing interventions to support
care of well children and families,
398–410
parenting a child with chronic illness
and, 412–415
transitions and, 391, 396–398
understanding and working with family
routines in, 403
web sites of interest in, 426
Child Poverty Report Card, 2011, 170
Children. See also Parents
abuse of, 176, 335, 363, 406–408
adoption of, 48–51
attachment of, 325–326, 362, 374
boomerang, 43
brain development and early trauma in,
328–329
caregiving for adult, 252–253
with chronic illness, 410–415
of cohabitating couples, 44, 55
communication with families with,
399–400
costs associated with special health care
needs, 241–242
death of, 302, 306–309
depression and, 537–538
developmental trauma theory and,
326–329
families caring for chronically ill,
253–256
fathering and, 54–55
grandparents caring for grand-, 490
health promotion, 403–404
hospital care of, 418–420
identifying health risks and teaching
prevention strategies for, 404–410
mutual responsibility for care and
nurturing of, 360–362
nursing interventions to support care of
well, 398–410
obesity and overweight among,
148–149, 405–406
older adults caring for adult,
490–491
in poverty, 409–410
preparation for surgery using hospital
play, 400
risks associated with PTSD in,
337–338
of same-sex couples, 48, 55–56, 174
siblings of chronically ill, 258–259
social-emotional, cognitive, and
physical dimensions of individual
development in, 392–396
stages, tasks, and situational needs of
families of disabled and chronically
ill, 416–417
in stepfamilies, 56–57
systems of care for chronically ill, 259
trauma in, 326–330
unintentional and intentional injuries
in, 405
when family member is critically ill,
facilitating connections for, 303–304
of working mothers, 27, 36, 175
Children’s Health Insurance Program
(CHIP), 409
Children’s Health Insurance Program
Reauthorization Act (CHIPRA), 140
Child Welfare Information Gateway,
407
Chronic illness, 237–238
bioecological systems theory applied to,
86–87
care programs for older adults, 497
case study, 74–76, 262–272
during childbearing, 371
in children, 241–242
children with, 410–415
chronic illness framework applied to,
90–91
core family processes and, 247–248
course of, 88–89
defined in families with sick children,
410–412
developmental and family life cycle
theory applied to, 82–83
economic burden of, 240–242
families caring for children living with,
253–256
family adaptation to, 251–252
family assessment and intervention
model applied to, 94–95
family caregiving and, 252–256
family functioning in, 90
Family Health Model and, 244–249
Family Management Style Framework
(FMSF), 242–244
family nursing intervention during,
261–262
family systems theory applied to,
78–79
framework, 87–91, 101
as a global concern, 238–242
gradual or acute onset of, 87–88
as health determinant, 144–146
health promotion for prevention of,
249
helping families live with, 249–261
maintaining family life with child
having, 413–414
normalization and family management
styles in childhood, 415
nurturing a child with, 413
parenting a child with, 412–415
parents taking care of self and child
with, 414–415
policy related to, 153–154
Rolland’s Chronic Illness Framework,
242
self-management and, 250–251
siblings of children with, 258–259,
413–414
social support for, 259–261
stages, tasks, and situational needs of
families of children with disabilities
and, 416–417
surveillance of, 239–240
systems of care for children with, 259
theoretical perspectives on, 242–249
time phases, 89–90
trajectory of, 89
transition of adolescents to adult
services for, 256–258
Chronic Illness Framework, 242
Chronic obstructive pulmonary disease
(COPD), 145
Chronosystems, 84, 85
Cigarette smoking, 149, 543–544
by adolescents, 150
Circumplex Model of Marital and Family
Systems, 6
Clarification and interpretation by
nurses, 14
Client, family as, 10, 11
Clinical model of family health, 208
Closed boundaries, 77
Cochrane Database of Systematic
Reviews, 571
Cohabitation, 38, 43, 44
parenting and, 55
Cohesion, family, 7
Collaboration and partnership in
community/public health nursing,
567–568
Collaborator, nurse as, 14
Commonwealth Care, 140
Communication
childbearing and adjusting to changed
patterns of, 362–363
cybernetics and, 114
with families with children, 399–400
family, 29
of genetic information, 192–195
in the medical-surgical unit,
443–444
in palliative and end-of-life care,
287–289
at time of actively dying, 301
Community and trauma, 334–335
Community-based appointments,
108–109
Community Care Access Centre
(CCAC), 152
Community Health Nurses of Canada,
570
Community nursing centers, 571–572
Community/public health nursing,
560–561
assessment, assurance, and policy
development in, 574–577
case study, 578–580
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collaboration and partnership in,
567–568
in community nursing centers,
571–572
cultural awareness, sensitivity, and
safety, 567
defined, 561
empowerment through, 569–570
examples of, 565–566
facilitating access to resources, 574
health education in, 573–574
health promotion frameworks, 563
health promotion standards of
practice, 563–564
nurse-client relationship with families
and communities in, 568–569
principles in process of, 564
public health departments and,
572–573
roles with families and community,
573–577
settings for, 570–573
social determinants of health and,
564–565
trends in public health and, 577–578
Comorbidities and mental health, 523
Component of society, family as, 11, 12
Concepts, 69
Conceptual models
chronic illness, 242–249
defined, 69
foundations for, 70–76
nursing, 69–70
theory-guided, evidence-based
childbearing nursing, 356–366
Conflict, family, 6
aging and, 486–487
role strain and, 28–29
Connections with families, establishing
and sustaining, 289–290
Consent in family child health nursing,
415–418
Constant illness, 88–89
Consultant, nurse as, 14
Contempt, 6
Context
Canada in, 169–173
Canadian health care, 177–178
domain, 246
embedded, 209
family as, 10, 11
Family Health Model, 245–246
family nursing practice attending to,
178–184
integral to family nursing, 169
Continuing care retirement communities
(CCRCs), 493, 497
Contract, family self-care, 220
Coordinator, nurse as, 14
Coping, family, 25–26
Core Competencies for Public Health in
Canada, 563
Counselor, nurse as, 14
Course of chronic illness, 88–89
Creating Enriched Learning Environments
Through Partnerships in Long-Term
Care, 501
Crisis plans, mental health, 544–545
Critical Care Family Needs Inventory
(CCFNI), 435
Critical care units. See Intensive care unit
(ICU)
Criticism, 6
Cultural awareness, 197
community/public health nursing and,
567
mental health conditions and, 545
Cultural values, 197
about death and dying, 281–282
Culture, family, 217–218
Current Population Surveys, 35
Cybernetics, 114
Cystic fibrosis, 189
D
Death. See also End-of-life care; Palliative
care
adolescent, 150
awareness of possibility of, 297
bereavement care after, 285, 302–303
from cancer, 239
care at time of, 300–302
of children, 302
from chronic illness, 239
finding meaning and, 299–300
at home, 305
perinatal, 369–370
personal assumptions and biases about,
280–281
personal assumptions and biases about
people and their backgrounds and,
281–282
settings, 279
signs of imminent, 301
sudden or traumatic, 304–305
Decision making
family, 29–30
in the ICU, 440
in palliative and end-of-life care,
296–297
shared, 123–125, 440
Deductive reasoning, 68
Defensiveness, 6
Delirium, 504
Deliverer and supervisor of care and
technical expert, nurse as, 14
Dementia, 189, 493, 533, 539–541
Demographics
adoption, 48–51
aging, 38–39
aging families, 480–482
assisted reproductive technologies,
47–48
changing family norms and, 37–38
cohabitation, 55
economic, 36–37
fathering, 54–55
fertility rate, 22, 45–47
gender roles, 36–38
geographical diversity and, 169–170
grandparenting, 57–58
immigration and ethnic diversity, 39–40
implications for health care providers,
40
information sources, 35
living arrangements, 40–45
overview, 34–35
parenting, 45–59
same-sex couple families, 55–56
single mothers, 51–54
stepfamilies, 56
Denham’s Family Health Model, 73
Department of Health and Human
Services, U. S. (USDHHS), 147
Depression
children and, 537–538
in the elderly, 504–505
major depressive disorder (MDD), 533,
536–538
postpartum, 375–376
Determinants of health, 138, 142–147
Development
childbearing and individual, 398
individual, 398
nuclear families, 19
social-emotional, cognitive, and
physical dimensions of individual,
392–396
theory (See Family Developmental and
Life Cycle Theory)
Developmental Model of Health and
Nursing (DMHN), 211–212
Developmental trauma theory, 326–329
Diabetes, 145, 149, 189, 239
case study, 262–266
self-management, 250
Diagnostic and Statistical Manual of Mental
Disorders, Fifth Edition (DSM-V),
122, 322, 521–522
Diagnostic genetic tests, 190
Dietary Guidelines for Americans 2010, 218
Direct-to-consumer genetic tests,
190–191
Disabled veterans, 491
Disasters, families affected by, 333
Disaster syndrome, 327
Discrimination and genetic testing, 196
Disparities. See Health disparities
Diversity
economic, 170–171
ethnocultural, 171–172
geographic, 169–170
linguistic, 172
religious, 172–173
Divorce, 6, 26, 34, 38
aging and, 482–484
family life cycle for families of, 81
stepfamilies and, 56–57
DNA (deoxyribonucleic acid), 188
Domestic violence, 175–177, 332–333
Dominant conditions, 198
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Index 607
Donation, organ, 453
Do not resuscitate (DNR) orders, 448,
450
Down syndrome, 189, 256
DSM-V. See Diagnostic and Statistical
Manual of Mental Disorders, Fifth
Edition (DSM-V)
Durable power of attorney for health
care, 448
E
Early trauma, 325–330
Ecological Systems Theory, 83
trauma and, 323–325, 338–339
Ecomaps, family, 116–120
Economics. See also Poverty
aging and, 482
at-risk pregnancy and, 372, 373
burden of chronic illness, 240–242
changes, 36–37
children in poverty and, 409–410
diversity, 170–171
elder care and, 42
fertility rate and, 46
financing childbearing and child rearing
and, 359–360
functions of the family, 24
housing and poverty reduction policies
and, 153
resources influences on family health,
213–214
single mothers and, 52
Education
of children with special needs, 412–413
health, 573–574
as health determinant, 147
nursing, 159
in palliative and end-of-life care, 281
policy, 151–153
preconception assessment and,
199–200
school nursing and, 152
Elder care, 155, 489–490
acute care, 503–505
assisted living, 493, 498–500
caring for, 489–490
case study, 505–514
chronic care programs, 497
demographic diversity of, 481–482
family caregiving, 487–496
home- and community-based services
(HCBS), 492, 496–497
hospice care, 511–514
nursing homes, 493, 500–503
palliative and end-of-life care in,
502–503
residential long-term care, 493, 497
settings, 496–505
Elderly, the. See also Aging
abuse of, 176
caring for adult children, 490–491
chronic care programs for, 497
living arrangements of, 41–42
programs and models to improve
hospital quality of care for, 498
public health departments and, 573
social policy and, 155
Elementary and Secondary Education
Act, 151
Emancipated minors, 417
Embedded context, 209
Emotional health and decision to have
genetic testing, 195–196
Emotional support for families with
chronically ill member, 260
Empowerment, family, 221
community/public health nursing and,
569–570
in palliative and end-of-life care,
291–293
End-of-life care. See also Death
advance care planning in, 295–296
awareness of possibility of death and,
297
balancing hope and preparation,
294–295
barriers to optimal, 285–286
bereavement care, 285, 302–303
building on strengths, 297
cardiopulmonary resuscitation,
449–450
care at time of actively dying and,
300–302
case studies, 305–314
connections between families and
nurses in, 286–289
decision making in, 296–297
defined, 278–280
empowering families, 291–293
encouraging patients and families
through, 298
facilitating choices, 295–297
facilitating healing between family
members, 298–299
family meetings in, 299
family nursing practice assessment and
intervention, 286–305
finding meaning through, 299–300
in the hospital, 446–453
involvement of interprofessional team
in, 284–285
involvement of the family in illness and,
282–284
key areas of focus for education in, 281
life-sustaining therapies (LSTs),
450–453
managing negative feelings through, 298
offering resources, 297–298
organ donation and, 453
personal assumptions and biases about
death and dying and, 280–281
providing information in, 293–294
relevant literature, 279–280
relieving the patient’s suffering in,
289–291
in residential care settings, 502–503
special situations in, 303–305
Enduring management style, 243–244
Energized family, 6
Engagement in care, family, 107–111
Environmental influences on family
health, 214
Environmental specialist, nurse as, 14
Epidemiologist, nurse as, 14
Equal Rights Amendment (ERA), 38
Essential Nursing Competencies and
Curricula Guidelines for Genetics and
Genomics, 187
Ethnicity
adolescence and, 150, 409
alcohol use and, 149–150
caregiving and, 489–490
cigarette smoking and, 149
demographic changes, 39–40
diversity, 39–40, 171–172
as health determinant, 144
mental health conditions care and, 545
obesity and, 148–149
poverty and, 409
social determinants and resulting health
disparities, 142
Ethnicity Diversity Survey, 171
Ethnocultural diversity, 171–172
Eudaimonistic model of family health,
208
European history and families, 19
Evaluation, 127–128
Exosystems, 84, 85, 213–216
trauma and, 325
Extrapyramidal symptoms (EPS), 535
F
Facility-based long-term care, 493
Familial hypercholesterolemia, 189
Families
adaptation, 251–252
affected by disasters, 333
affected by war, 331–332
affective functions of, 23–24
assumptions and expectations about,
173–177
balanced, 7
caregivers, 126–127
caring for children living with chronic
illness, 253–256
Circumplex Model of Marital and
Family Systems, 6
as client, 10, 11
communication, 29
as component of society, 11, 12
conflict within, 6
as context, 10, 11
coping, 25–26
culture, 217–218
decision making, 29–30
defined, 4–5, 146–147, 560
development, 79–83
economic functions of, 24
empowerment of, 221, 291–293
encouragement for, 298
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energized, 6
engaged in care, 107–111
European history, 19
facilitating healing within, 298–299
family career and, 390, 398
functioning in chronic illness, 90
functions, 22–25
genograms and ecomaps, 116–120
health care functions of, 24–25
health literacy, 120
healthy, 5–8
history of, 18–20
housekeeper and child care role in,
27
industrialization and, 19
involvement in one family member’s
illness, 282–284
lifestyle patterns, 218
marriage health and, 6
meals, 223–224
meetings, 299
norms, changing, 37–38
North American, 19
and nurse reflections, 129–133
prehistoric, 18–19
processes, 25–30, 217
provider role in, 27
reproductive functions of, 22–23
rituals and routines, 30, 222–223,
365
roles, 26–29
as safe and nurturing, 175–177
same-sex couple, 55–56, 174
secrets, 194
sick role in, 27–28
single-parent, 34, 46, 170
socialization functions of, 23
social policy, 138–139
sources of information on demography
of, 35
stages, 390–391, 416–417
story analysis, 120–125
structure, 20–22, 34–35, 40–41, 217,
246, 482–483
as system, 10–12, 11
tasks, 391
today, 20
transitions, 365–366, 391, 396–398
trauma, 330–334
as unit of care, 16
violence and PTSD, 332–333
Families With Young Adults: Launching
Phase, 82
Familismo, 560
Family advocate, nurse as, 14
Family and Medical Leave Act, 155, 241,
376
Family Assessment and Intervention Model
(FS3I), 91–99, 101–102, 111, 112
Family Assessment Device (FAD), 209
Family-centered care
elements of, 388–390
meetings and care conferences,
110–111
Family-Centered Geriatric Resource
Nurse (FCGRN), 498
Family child health nursing
care of children with chronic illness and
their families in, 410–415
case study, 420–426
child care, after-school activities, and
children’s health promotion and,
403–404
concepts of, 390–398
consent in, 415–418
elements of family-centered care and,
388–390
family career and, 390
family stages and, 390–391
family tasks and, 391
in the hospital, 418–420
identifying health risks and teaching
prevention strategies in, 404–410
nursing interventions to support care
of well children and families,
398–410
parenting a child with chronic illness
and, 412–415
transitions and, 391, 396–398
understanding and working with family
routines in, 403
web sites of interest in, 426
Family Developmental and Life Cycle
Theory, 71, 79–83, 100
childbearing and, 358–366
Family health. See also Family health
promotion
adaptive model, 208
clinical model, 208
definition of, 5, 206–207
economic influences on, 213–214
environmental influences on, 214
eudaimonistic model, 208
exosystem and macrosystem influences
on, 213–216
family nursing interventions for,
219–224
governmental health and families
policies influences on, 214
media influences on, 214–216
microsystem and mesosystem
influences on, 216–219
model, 208–209
models of, 207–209
potential, 212
role-performance model, 208
routines, 209, 210, 262
Family health care nursing, 3–4
approaches to, 10–12
context integral to, 169, 178–184
defined, 8
historical perspectives, 15–20
levels of, 8, 9
nature of interventions in, 9–10
obstacles to, 15
of postpartum families, 372–376
roles, 12–15
theoretical and conceptual foundations,
70–76
variables that influence, 12
Family Health Model, 73, 244–249
chronic illness and, 261
Family health promotion, 205–206. See
also Family health
case studies, 224–231
common theoretical perspectives,
207–213
defined, 205
ecosystem influences on, 213–219
historical perspectives of, 215
models for, 209–213
policies, 154–155
prevention of chronic illness through,
249
Family history, genetic, 197–199
Family life cycle theory, 478
Family Management Style Framework
(FMSF), 242–244
Family nursing assessment. See
Assessments
Family Reasoning Web, 121
Family self-care contract, 220
Family social policy, 138–139
Family social science, 16
theories, 70, 73
Family Systems Stressor-Strength
Inventory, 457–471
Family Systems Theory, 68, 69, 71,
76–79, 100
aging and, 478
childbearing family nursing and,
357–358
trauma and, 325
Family Systems Therapy Theory, 72
Family therapy theories, 70, 73
Fast food, 218
Fathering, 54–55
childbirth and, 354
Feeding management of infants,
373–374
Fertility rate, 22, 45–47, 482–483
Fight-or-flight response, 326
First Nations people, 147
Five Core Needs, 326
Flexibility, family, 7
Flexible boundaries, 77
Floundering management style,
243–244
Foster care adoption, 49
Framework of Systemic Organization,
73
Frameworks, 69
Friedemann’s Framework of Systemic
Organization, 73
Friedman Family Assessment Model, 111,
112–113
Frontier Nursing Service (FNS), 16,
157
FS3I. See Family Assessment and
Intervention Model
608 Index
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Index 609
Functional domain, 246
Functions, family, 22–25
“Fundamental Principles for Caregiver
Assessment,” 494
Future of Nursing: Leading Change,
Advancing Health, The, 157
Future of Public Health, The, 574
G
Gender differences. See also Men;
Women
aging, 482
economic role, 27, 36
elder care, 41–42
financial disparities, 482
as health determinant, 144
life expectancy, 38, 41
marriage age, 36
Genes, 188
Genetic Information Nondiscrimination
Act (GINA), 196
Genetics
cultural values and, 197
decision to test, 195–196
evaluation of interventions with
genomics and, 201–202
family history, conducting, 197–199
genomics and, 188–189
information, family disclosure of,
192–195
information and nurses’ role, 196–202
preconception assessment and
education, 199–200
providing information and resources
with testing of, 201
risk assessment in adult-onset diseases
and, 200–201
testing, 189–192
Genograms, family, 116–120
Genomics, 188–189, 201–202
Geographical diversity of Canada,
169–170
Geographical information systems (GIS),
577
Geriatric Education Centers, 501
Geriatric Resource Nurse (GRN) Model,
498
Geriatric Syndrome Management Model,
498
Gestalt, 206
Global Economic Burden of Non-communicable
Diseases, The, 240
Goal Attainment Theory, 72
Goals, family, 209
Gradual onset of chronic illness,
87–88
Grandchildren, 490
Grandparents, 57–58, 364
caring for grandchildren, 490
Growing Healthier Report, 577
Guided Care, 497
Guttmacher Institute, 155
H
Hague Convention on Protection of
Children and Co-operation in
Respect of Intercountry Adoption, 50
Hartford Institute for Geriatric Nursing
(HIGN), 487
Head Start, 147
Health, social determinants of, 141,
142–147, 564–565
Health care
access to, 154, 177–178
decisions and genetic testing, 196
deliverers, 14
family role in, 27
home, 155
Health care functions of the family,
24–25
Health care reform
social policy and, 156–159
United States, 139–140, 157
Health determinants, 138
Health disparities, 155
areas in need of additional social policy
to avoid growing, 155–156
in Canada, 140–141
defined, 138
elder care and, 155
LGBT, 156
risks and behaviors that contribute to,
148–151
social determinants and resulting,
142–147
in the United States, 139–140
Health education, 573–574
Health insurance in the United States,
139–140, 409, 574
Health Insurance Portability and
Accountability Act (HIPAA), 140,
257
Health literacy, 146
family, 120
Health missionaries, 16
Health policy. See Social policy
influence on family health, 214
Health potential, 212
Health promotion. See Family health
promotion
child care, after-school activities, and
children’s, 403–404
frameworks, standards, and principles in
community/public health nursing,
561–570
strategies for families with children,
410
Health resources as health determinant,
147
Health teacher, nurse as, 13–14
Health work, 212
Healthy Baby Healthy Children, 565
Healthy Marriage Initiative, 147
Healthy People 2000, 154, 215
Healthy People 2010, 146
Healthy People 2020, 152, 156, 214, 215,
216, 564, 572
Heart disease, 189
Henry Street Settlement, 157
Heterosexual nuclear families, 173–174
High-risk pregnancies, 371–372
Historical perspectives of family health
care nursing, 15–20
HIV/AIDS, 145–146
policy, 153
Home- and community-based services
(HCBS), 492, 496–497
Home health care, 155
death at home and, 305
nursing role in assessing and supporting
caregivers in, 491–496
Homelessness, 146
Homeostasis, 91, 328
Home visits, 108–109, 126
in community/public health nursing,
569, 570–571
Homicide, 150
Homosexuality and LGBT health
disparities, 156
Hospice care, 511–514
Hospital at Home, 498
Hospital care. See also Acute care settings
of children, 418–420
end-of-life care in, 446–453
programs and models to improve quality
of care for older adults in, 498
Hospital Elder Life Program (HELP), 498
Household, family, 246
tasks assumed during childbearing,
371–372, 373
Housekeeper and child care roles in
families, 27
Housing and poverty reduction policies,
153
Housing First program, 153–154
Human Becoming Theory, 73
Human Ecology Theory, 83
Huntington’s disease, 189, 192, 195
Hurricane Katrina, 325
Hypotheses, 69
I
ICD-10, 522
ICD-9-CM. See International Classification
of Diseases: Clinical Modifications,
Ninth Edition (ICD-9-CM)
Identity, 23–24
IFNA. See International Family Nursing
Association (IFNA)
IFNC. See International Family Nursing
Conference (IFNC)
Illegal drug use, 150
Immigration and ethnic diversity,
39–40, 171–172
interpreters and, 110
religious diversity and, 172–173
Incapacitation due to chronic illness, 89
Individual development, 398. See also
Development
Individual family service plan (IFSP), 413
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Individualized educational program
(IEP), 256
Individuals with Disabilities Education
Act (IDEA), 412–413
Inductive reasoning, 68
Industrialization and families, 19
Infertility, 366–367
Informational support for families with
chronically ill member, 260
Initial/crisis time phase, chronic illness,
89
Injuries, unintentional and intentional
child, 405
Institute for Patient and Family Centered
Care (IPFCC), 110
Institute of Medicine (IOM), 142, 146,
157, 249, 250, 567, 574, 576
Instrumental activities of daily living
(IADLs), 481, 488, 493–494
Instrumental support for families with
chronically ill member, 260
Instruments, family assessment, 111–120
Intensive care unit (ICU), 300, 304,
434–435
cell phones in, 438
family interventions, 439–441
family needs in, 435–436
family relocation stress and transfer
anxiety, 441
nursing role ambiguity and conflict,
436–437
visiting policy, 437–438
waiting rooms, 438
Intergenerational relationships, 485–486
International adoption, 49–50, 368
International Classification of Diseases:
Clinical Modifications, Ninth Ediction
(ICD-9-CM), 122
International Family Nursing Association
(IFNA), 16
International Family Nursing Conference
(IFNC), 16
International Family Therapy Theory, 72
International Red Cross, 333
International Society for Gerontechnology
(IGS), 541
Interpreters, 110
Interprofessional collaboration (IPC),
568
Interprofessional team in palliative care,
284–285
Interventions, 9–10, 125–127. See also
Assessments
adopting families, 369
brief therapeutic conversations in acute
care, 126
childbearing and child care, 361–365
for childbearing families experiencing
chronic threats to health, 373
during chronic illness, 261–262
at discharge from medical-surgical unit,
445–446
evaluation of genomics and genetics
nursing, 201–202
family health promotion, 219–224
Family Systems Theory and, 78–79
home visits and telephone support, 126
ICU, 439–441
infertility and nursing, 367
mental health crisis plans, 544–545
palliative and end-of-life care,
286–305
postpartum depression, 376
prevention of mental health conditions,
543–544
psychoeducation, 544
PTSD, 336–337
self-care talk for family caregivers,
126–127
to support care of well children and
families, 398–410
Intimate partner violence (IPV),
332–333
Investing in Families, 566
IOM. See Institute of Medicine (IOM)
IPFCC. See Institute for Patient and
Family Centered Care (IPFCC)
J
Johnson’s Behavioral Systems Model for
Nursing, 70, 72
Justice, social, 139
K
King’s Goal Attainment Theory, 72
Knowledge, acquisition of, 28
L
Letter, therapeutic family, 128
LGBT persons
adoption by, 367
health disparities, 156
Liaison, nurse as, 14
Life course perspective, 478–480
case study, 505–514
Life expectancy, 38–39, 41
Lifespan Respite Care Act, 241
Lifestyle patterns, family, 218
Life-sustaining therapies (LSTs),
450–453
Linguistic diversity, 172
Literacy, health, 120, 146
Living apart together (LAT), 484
Living arrangements, 40–45
elderly, 41–42
young adults, 42–44
Living wills, 448
Longitudinal Survey of Immigrants to
Canada (LSIC), 174
Long-term care (LTC), 491, 500
facility-based, 493
residential, 493, 497
Low birth weight, 48
Lung diseases, 145
M
Macrosystems, 84, 85, 213–216
trauma and, 325
Major depressive disorder (MDD), 533,
536–538
Maltreatment, child, 406–408
Marriage, 6, 34. See also Families
age, 36, 37, 43
aging and, 482–484
cohabitation outside of, 38, 43, 44
family roles and, 26–29
same-sex, 45
stepfamilies and, 56–57
McMaster Clinical Rating Scale (MCRS),
209
McMaster Model of Family Functioning
(MMFF), 209
Meals, family, 223–224
Meaning, finding, 299–300
Media influences on family health, 214–216
Medicaid, 139–140, 155, 409–410,
498–499, 500
Medical Care Act, 140
Medical decisions and genetic testing,
196
Medical-surgical units, 441–446
Medicare, 39, 139–140, 155, 500
best practices, 501
Meetings, family, 299
Men. See also Gender differences
child care by, 27
elderly, 41–42
family roles and, 26–29
as fathers, 54–55
life expectancy, 38–39
marriage age, 36, 37, 43
Mental health conditions, 146
attention-deficit hyperactivity disorder
(ADHD), 413, 533, 541–542
bipolar disorder, 532, 533, 538–539,
545–551
burden of family caregiving for,
526–527
case studies, 545–552
children living with a parent with,
529–531
children living with a sibling with, 531
children with family member with,
527–531
comorbidities, 523
crisis plans, 544–545
defined, 521
dementia, 533, 539–541
diagnosis, 521–522
families of individuals with specific,
533–542
family members of individuals with,
526–533
family role changes and, 527
general approaches toward those with,
523–525
major depressive disorder (MDD), 533,
536–538
610 Index
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Index 611
older adults caring for adult children
with, 490–491
parenting children with, 532–533
policy, 153–154
postpartum depression, 375–376
prevalence of, 522–523
prevention of, 543–544
providing culturally competent care for,
545
psychoeducation, 544, 551–553
Recovery Model, 524
role of family mental health nurse and,
542–545
schizophrenia, 533, 534–536
spousal caregiving for, 527
stigma of, 525–526
in the United States and Canada,
522–526
Mental health promotion, 565
Mesosystems, 84, 85, 216–219
trauma and, 323–325
Metabolic syndrome, 535
Microsystems, 84, 85, 216–219
trauma and, 323
Mid-time phase, chronic illness, 89–90
Military OneSource, 331
Model of Health-Promoting Family,
212–213
Models
conceptual, 69
family assessment, 111–120
nursing process, 106
social policy, 141–142
Moderation, 209
Moral distress and palliative care, 286
Multiple sclerosis (MS), 306–309
Mutual responsibility for child care and
nurturing, 360–362
N
NANDA. See North American Nurses
Diagnosis Association (NANDA)
National Advance Care Planning Task
Group, 296
National Alliance for Caregiving, 488
National Alliance on Mental Illness
(NAMI), 535
National Association of School Nurses
(NASN), 152
National Cardiovascular Data Registry,
239
National Center for PTSD, 330
National Clearinghouse on Abuse in
Later Life (NCALL), 573
National Comprehensive Cancer
Network, 189
National Congress of Men, 19
National Council of Family Relations, 16
National Family Caregiver Program,
241
National Health and Nutrition Examina-
tion Survey (NHANES), 35, 239
National Health Interview Survey, 35
National Organization for Women
(NOW), 19
National Organization of Nurse Practi-
tioner Faculties (NONPF), 577
National PACE Association, 497
National Study of Adolescent Health, 150
National Survey of Children with Special
Health Care Needs, 2009-2010, 253
National Survey of Family Growth, 35, 55
Native Americans
automobile accidents among, 150
binge drinking among, 149–150
Neglect, child, 406–408
Neuman Systems Model, 70, 73, 91
Neuroaffective Relational Model, 326
Neuroleptic malignant syndrome (NMS),
535
New England Journal of Medicine, 445
Next Step in Care, 501
NIC. See Nursing Intervention
Classification (NIC)
Nightingale, Florence, 16
Nightingale nursing theory and model, 72
No Child Left Behind (NCLB), 151
Nonnormative changes in families, 82
Normalcy in families with childhood
chronic illness, 415
Normative changes in families, 82
Norms, changing family, 37–38
North American families, 19
North American Nurses Diagnosis
Association (NANDA), 121, 122
Nuclear families, 19
as the norm, 173–174
Nurse practitioners, 577–578
Nurses Improving Care to Health System
Elders (NICHE), 498
Nursing. See also Family health care nursing
anticipatory guidance and information
offered through, 222
assisted living, 499–500
conceptual frameworks, 70–76
contract, 220
cultural awareness in, 197
education, 159
family mental health, 542–545
nurse navigator and, 446
nursing home, 500–501
process model, 106
research, 159
school, 152
theories, 69–70, 73
Nursing: Scope and Standards of Practice, 4
Nursing Home Reform Act, 500
Nursing homes, 493, 500–503
Nursing Intervention Classification
(NIC), 121
Nursing’s Social Policy Statement, 4
O
Obesity, 148–149, 335–336
in families with children, 405–406
Obstacles of family health care nursing, 15
Older adults. See Aging; Elderly, the
Older Adults Services Inpatient Strategies
(OASIS), 498
Omaha System-Community Health
Classification System, 122
Ontario Early Years Centers (OEYCs),
572
Open boundaries, 77–78
Orem’s Self-Care Deficit Theory, 73
Organ donation, 453
Ottawa Charter for Health Promotion, 563
Overnutrition, 218
P
Palliative care. See also Death
advance care planning in, 295–296
awareness of possibility of death and,
297
balancing hope and preparation,
294–295
barriers to optimal, 285–286
bereavement care, 285, 302–303
building on strengths, 297
care at time of actively dying and,
300–302
case studies, 305–314
connections between families and
nurses in, 286–289
decision making in, 296–297
defined, 278–280
empowering families, 291–293
encouraging patients and families
through, 298
facilitating choices, 295–297
facilitating healing between family
members, 298–299
family meetings in, 299
family nursing practice assessment and
intervention, 286–305
finding meaning through, 299–300
involvement of interprofessional team
in, 284–285
involvement of the family in illness and,
282–284
key areas of focus for education in, 281
managing negative feelings through, 298
offering resources, 297–298
personal assumptions and biases about
death and dying and, 280–281
personal assumptions and biases about
people and their backgrounds and,
281–282
providing information in, 293–294
relevant literature, 279–280
relieving the patient’s suffering in,
289–291
in residential care settings, 502–503
special situations in, 303–305
Parenting. See also Childbearing; Children
adoption and, 48–51
arranging space for a child and, 358–359
assisted reproductive technologies
(ARTs) and, 47–48
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a child with chronic illness, 412–415
cohabitation and, 55
communication patterns and, 362–363
demographics, 45–59
establishing family rituals and routines
during, 365
Family Management Style Framework
and, 242–244
family transitions during, 365–366
fertility rate and, 22, 45–47
financing and, 359–360
grand-, 57–58, 364
maintaining family members’ motivation
and morale during, 364–365
by men, 54–55
mutual responsibility for, 360–362
planning for subsequent children and,
363
realigning intergenerational patterns,
363–364
role learning of family members and,
362
by same-sex couples, 55–56
single-parent, 34, 46, 81
in stepfamilies, 56–57
styles, 401–402
Parent Resource for Information Devel-
opment and Education (PRIDE),
368
Parents. See also Children
of boomerang children, 43
communication of genetic information
to, 193–194
same-sex couples as, 45
single, 34
taking care of self with child suffering
from chronic illness, 414–415
Parkinson’s disease, 238, 240,
266–272
Parse’s Human Becoming Theory, 73
Patient-Centered Primary Care
Collaborative, 497
Patient/Parent Information and
Involvement Assessment Tool
(PINT), 115, 123–124
Patients
encouraging, 298
family meetings with, 299
finding meaning, 299–300
making choices in palliative and
end-of-life care, 295–297
managing negative feelings, 298
Patient Self-Determination Act, 448
Patriarchy, 19
Peplau’s Theory of Interpersonal Relations
in Nursing, 569
Perinatal loss, 369–370
pregnancy following, 370–371
Permissive parenting, 402
Personal Responsibility and Work
Opportunity Reconciliation Act
(PRWORA), 52, 53
Person-centered care, 502
Pharmacogenetic testing genetic tests, 190
Physician orders for life-sustaining
treatment (POLST), 448
PINT. See Patient/Parent Information
and Involvement Assessment Tool
(PINT)
Pioneer Network, 500, 501
Policy. See Social policy
childbearing family nursing, 376–377
public health, 577
Population Health Promotion Model, 563
Postpartum depression, 375–376
Postpartum families, family nursing of,
372–376
Post-traumatic stress disorder (PTSD),
322–323
community and, 334–335
developmental trauma theory and,
326–329
family functioning and, 333–334
family trauma and, 330–334
family violence and, 332–333
nursing assessment and intervention,
336–337
risks associated with, 337–338
secondary traumatization and, 334, 338
systemic trauma and, 335–336
theory applied to, 323–325
Potential, health, 212
Poverty. See also Economics
in Canada, 170
children in, 409–410
education and, 147
health care insurance and, 139
as health determinant, 143–144
reduction policies, 153
single parents living in, 46
welfare reform and, 52
Preconception assessment and education,
199–200
Predictive and presymptomatic genetic
tests, 190, 191–192, 195
Pregnancy. See also Childbearing
family nursing of postpartum families
and, 372–376
following perinatal loss, 370
postpartum depression after, 375–376
preterm birth and, 48, 377–381
threats to health during, 371–372
Prehistoric family life, 18–19
Prenatal Care Assistance Program
(PCAP), 140
Prenatal diagnosis genetic tests, 190
Preselection, 195
Preterm delivery, 48
case study, 377–381
Private adoption, 368
Private domestic adoption, 49
Processes, family, 25–30, 217
chronic illness and, 247–248
Program of All-inclusive Care for the
Elderly (PACE), 497
Progressive chronic illness, 88–89
Project F-EAT, 223
Propositions, 69
Provider role in families, 27
Psychoeducation, 544, 551–553
Public health
departments, 572–573
nursing (See Community/public health
nursing)
nursing (PHN) generalists, 564
policy, 577
R
Race. See Ethnicity
Ray’s Adaptation Model, 72
Reasoning, inductive and deductive, 68
Recovery Model, 524
Reflections, nurse and family, 129–133
Registered Nurses Association of Ontario
(RNAO), 158
Relapsing/episodic illness, 88–89
Relational inquiry, 168
Relational nursing
Canada in context and, 169–173
Canadian health care context and,
177–178
in community/public health nursing,
568–569
context integral to, 169
facilitating healing between family
members, 298–299
family nursing practice attending to
context and, 178–184
in palliative and end-of-life care,
286–289
Relationships
ambivalence and conflict in, 486–487
family, 483–487
intergenerational, 485–486
same-generation, 483–485
in theories, 69
Religion
diversity, 172–173
influence on family health, 218–219
Relocation stress, 441
Reproductive functions of the family,
22–23. See also Childbearing
Researcher, nurse as, 14–15, 159
Residential care facilities, 493, 497
family involvement in, 501–502
nursing home, 493, 500–503
palliative care and end-of-life care in,
502–503
Resilience, 24, 329–330
Responsiveness, 401
Restlessness, terminal, 301
Resuscitation, child, 420
Retirement, 37
Risks
adolescent, 408–409
assessment in adult-onset diseases,
200–201
and behaviors that contribute to health
disparities, 148–151
child health nursing and identifying,
404–410
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Rituals and routines, 30, 222–223, 365
establishment of, 365
family health, 209, 210, 246–247, 262
perinatal loss, 371
understanding and working with family,
403
Roe v. Wade, 155
Roger’s Science of Unitary Human Beings,
72
Role model, nurse as, 15
Role-performance model of family
health, 208
Roles, family, 26–29
caregiving, 488–491
mental health conditions and, 527
Rolland’s Chronic Illness Framework, 242
S
Same-generation relationships, 483–485
Same-sex couples, 35, 45, 174
adoption by, 367
assisted reproductive technologies
and, 48
families, 48, 55–56
LGBT health disparities and, 156
“Sandwich” generation, 58
Sanger, Margaret, 16
Scared Sick: The Roles of Childhood Trauma
in Adult Disease, 336
Schizophrenia, 533, 534–536
School health, 566
School nursing, 152
Science and technology influences on
family health, 216
Science of Unitary Human Beings, 72
Secondary traumatization, 334, 338
Selective serotonin reuptake inhibitors
(SSRIs), 537
Self-care contract, family, 220
Self-Care Deficit Theory, 73
Self-care talk for family caregivers,
126–127
Self-identity, 23–24
Self-management, 250–251
Selye, Hans, 328
Sexuality
adolescents and, 408–409
throughout the life course, 484
Shaken baby syndrome, 363
Shared decision making, 123–125
in the ICU, 440
Siblings, 374
aging and, 484–485
of children with chronic illness,
258–259, 413–414
of hospitalized children, 419
of individuals with mental health
conditions, 531
realigning intergenerational patterns
and, 364
Sickle cell anemia, 189
Sick role in families, 27–28
Single mothers, 34, 46, 51–54
Single-parent families, 34, 46
family life cycle, 81
poverty and, 170
Skilled nursing facilities (SNFs), 493
Smoking. See Cigarette smoking
Social Determinants of Health Model,
141, 142–147, 564–565
Social-emotional, cognitive, and physical
dimensions of individual develop-
ment, 392–396
Socialization functions of the family, 23
Social justice, 139
Social policy
aging population, 154
areas in need of additional social policy
to avoid growing disparities,
155–156
defining, 138–141
determinants of health and, 138,
142–147
educational policy, 151–153
elder care, 155
family, 138–139
health promotion, 154–155
historical involvement of nurses in,
156–157
housing and poverty reduction policies,
153
LGBT health disparities and, 156
models, 141–142
nurse’s role in advocacy for, 156–159
nursing policy, research, and education
influencing, 158–159
nursing today and, 157–158
related to chronic illness, 153–154
in the United States, 139–140
women’s reproduction and, 155–156
Social science, 16
Social Security benefits, 37
Social support for chronic illness, 259–261
Society
aging, 38–39
families as component of, 11, 12
Society for Adolescent Medicine, 258
Special health care needs (SHCN)
children, 253–256, 410–415
Spirituality. See Religion
Spousal caregiving, 527
Stages, family, 390–391
tasks, and situational needs of families
of children with disabilities and
chronic illness, 416–417
State Child Health Insurance Program
(SCHIP), 139–140
Stepfamilies, 56–57
Stigma and mental health, 525–526
Stonewalling, 6
Story analysis, family, 120–125
Strain, role, 28–29
Strengths-based nursing care, 221
Stress
chronic, 145
family relocation, 441
toxic, 336
Stressors, family
adoption, 367–369
childbearing, 366–371
family structure and, 217
in family systems, 93–99
Family Systems Stressor-Strength
Inventory, 457–471
infertility, 366–367
perinatal loss, 369–370
pregnancy following perinatal loss,
370–371
when raising a child with chronic
health conditions, 255–256
Structural domain, 246
Structural Family Therapy Theory, 72
Structural Functional Theory, 71
Structure, family, 20–22, 34–35, 40–41,
217, 482–483
Family Health Model and, 246
Struggling management style, 243–244
Substance abuse, 150, 176–177, 336
Substance Abuse and Mental Health
Services Administration (SAMHSA),
522, 523
Subsystems, 78
Sudden or traumatic death, 304–305
Surgery, preparing children for, 400
Surrogate, nurse as, 14
Surveillance of chronic illness, 239–240
Symbolic Interaction Theory, 71
System, family as, 10–12, 11
Systemic trauma, 335–336
Systems Model, 70, 73, 91
T
TANF. See Temporary Assistance to
Needy Families (TANF)
Tardive dyskinesia (TD), 535
Tasks, family, 391
Tay-Sachs disease, 200
Technical expert, nurse as, 14
Teenage mothers, 47
Telehealth, 540
Telephone support, 126
Temporary Assistance to Needy Families
(TANF)
creation of, 53
legal definition of family and, 147
Terminal restlessness, 301
Terminal time phase, chronic illness, 90
Theoretical frameworks. See Conceptual
models
Theories, 67–68. See also specific theories
concepts in, 69
defined, 68–69
hypotheses in, 69
nursing conceptual frameworks, 70–76
perspectives and applications to families,
76–99
propositions in, 69
relationship between practice, research,
and, 68–70
Therapeutic family letter, 128
Thriving management style, 243–244
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Tidal Model, 524
Time phases, chronic illness, 89–90
Tobacco use, 149
by adolescents, 150
surveillance, 239
Toxic stress, 336
Trajectory of illness, 89
Transfer anxiety, 441
Transitional Care Model, 501
Transition of care, 256–258
Transitions, family, 365–366, 391, 396–398
during hospital care, 419–420
Transition Theory, 71
Transmission of family patterns, 116
Transracial adoption, 50, 368
Trauma, 321–323
assessment and intervention, 336–337
attachment and, 325–326
brain development and early,
328–329
cases studies, 339–347
community and, 334–335
death due to, 304–305
developmental trauma theory and,
326–329
disasters and, 333
early, 325–330
ecological theory applied to, 323–325,
338–339
family, 330–334
family functioning and, 333–334
Family Systems Theory applied to, 325
nurses and, 336–339
post-traumatic stress disorder (PTSD)
and, 322–325
risks associated with PTSD and,
337–338
secondary, 334, 338
systemic, 335–336
understanding of adult trauma through
early childhood, 329–330
war and, 331–332
Type 1 diabetes, 262–266
Type 2 diabetes, 145, 149, 239
self-management, 250
U
Unemployment, 359–360
Unequal Treatment: Confronting Racial
and Ethnic Disparities in Health Care,
142
Unified Parkinson’s Disease rating scale,
270–272
Uninvolved parenting, 402
United States, the
adoption in, 48–51
aging population in, 38–39
alcohol use in, 149–150
American family in, 19
cohabitation in, 44, 55
definition of family in, 147
economic changes in, 36–37
Family and Medical Leave Act, 155,
241, 376
fathering in, 54
fertility rate, 45–47
grandparenting in, 57–58
health care policy in, 139–140, 157, 574
illegal drug use in, 150
immigration to, 39–40
income gap in, 143
life expectancy in, 38–39
living arrangements in, 40–45
multigenerational households in,
41–42
obesity in, 148–149
poverty in, 143–144
same-sex couple families in, 55
stepfamilies in, 56
tobacco use in, 149
welfare reform in, 52, 53
V
Validators, 6
Veterans, disabled, 491
Victorian Order of Nurses (VON), 571
Violence
adolescents and, 408
against children, 405, 406–408
domestic, 175–177, 332–333
PTSD and, 332–333
screening questions, 407
Visiting policy
ICU, 437–438
medical-surgical units, 442–443
Volatiles, 6
W
Waiting rooms, ICU, 438
Wald, Lillian, 157
War. See also Post-traumatic stress
disorder (PTSD)
developmental trauma theory and,
327
disabled veterans of, 491
families affected by, 331–332
toxic stress and, 336
Warfarin, 189–190
Welfare reform, 52, 53
Welfare-to-Work program, 139
Well-being, 247, 249
WHO. See World Health Organization
(WHO)
WIC. See Women, Infants, and Children
Program (WIC)
Widowhood, 483–484
Wills, living, 448
Women. See also Childbearing; Gender
differences
changing economy and society effects
on, 36
elderly, 41–42
family roles and, 26–29
financial disparities, 482
historical roles, 15–16
life expectancy, 38–39, 41
marriage age, 36, 37, 43
postpartum depression in, 375–376
as single mothers, 34, 46, 51–54
violence against, 176
women’s movement and, 19, 38
women’s reproduction social policy
and, 155–156
as working mothers, 27, 36, 175, 359
Women, Infants, and Children Program
(WIC), 140, 148, 361
Work, health, 212
World Health Organization (WHO), 5,
122, 522, 560
on determinants of health, 138
on health disparities, 138
World War II
economic changes after, 36
public health nursing during, 16
women’s roles after, 37
X
X-linked recessive condition, 198
Y
Young adults
bioecological model of aging and, 479
living arrangements of, 42–44
mortality risk in, 150
social-emotional, cognitive, and
physical dimensions of individual
development in, 392–396
Youth Risk Behavior Surveillance System
(YRBS), 408
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Additional Resources
Title Page
Copyright Page
Dedication
Foreword
Preface
Contributors
Reviewers
Table of Contents
Unit 1 Foundations in Family Health Care Nursing
Chapter 1 Family Health Care Nursing
THE FAMILY AND FAMILY HEALTH
FAMILY HEALTH CARE NURSING
NATURE OF INTERVENTIONS IN FAMILY NURSING
APPROACHES TO FAMILY NURSING
VARIABLES THAT INFLUENCE FAMILY NURSING
FAMILY NURSING ROLES
OBSTACLES TO FAMILY NURSING PRACTICE
HISTORICAL PERSPECTIVES
FAMILY STRUCTURE, FUNCTION, AND PROCESS
SUMMARY
Chapter 2 Family Demography
A CHANGING ECONOMY AND SOCIETY
LIVING ARRANGEMENTS
PARENTING
SUMMARY
Chapter 3 Theoretical Foundations for the Nursing of Families
RELATIONSHIP BETWEEN THEORY, PRACTICE, AND RESEARCH
THEORETICAL AND CONCEPTUAL FOUNDATIONS FOR THE NURSING OF FAMILIES
THEORETICAL PERSPECTIVES AND APPLICATION TO FAMILIES
SUMMARY
Chapter 4 Family Nursing Assessment and Intervention
FAMILY NURSING ASSESSMENT
FAMILY NURSING ASSESSMENT MODELS AND INSTRUMENTS
ANALYSIS OF THE FAMILY STORY
FAMILY NURSING INTERVENTION
FAMILY NURSING EVALUATION
NURSE AND FAMILY REFLECTION
SUMMARY
Chapter 5 Family Social Policy and Health Disparities
DEFINING SOCIAL POLICY AND HEALTH DISPARITIES
MODELS
SOCIAL DETERMINANTS AND RESULTING HEALTH DISPARITIES
RISKS AND BEHAVIORS THAT CONTRIBUTE TO DISPARITIES
SOCIAL POLICY
THE NURSE’S ROLE IN ADVOCACY FOR SOCIAL POLICY
SUMMARY
Unit 2 Families Across the Health Continuum
Chapter 6 Relational Nursing and Family Nursing in Canada
CONTEXT IS INTEGRAL TO FAMILY NURSING
CANADA IN CONTEXT
HOW FAMILY IS UNDERSTOOD IN CANADA
CANADIAN HEALTH CARE CONTEXT
FAMILY NURSING PRACTICE: ATTENDING TO CONTEXT
SUMMARY
Chapter 7 Genomics and Family Nursing Across the Life Span
GENETICS AND GENOMICS
GENETIC TESTING
FAMILY DISCLOSURE OF GENETIC INFORMATION
DECISION TO HAVE GENETIC TESTING
ROLES OF THE NURSE
SUMMARY
Chapter 8 Family Health Promotion
WHAT IS FAMILY HEALTH?
COMMON THEORETICAL PERSPECTIVES
ECOSYSTEM INFLUENCES: BIOECOLOGICAL SYSTEMS THEORY
FAMILY NURSING INTERVENTIONS FOR FAMILY HEALTH PROMOTION
FAMILY CASE STUDIES
SUMMARY
Chapter 9 Families Living With Chronic Illness
CHRONIC ILLNESS: A GLOBAL CONCERN
THEORETICAL PERSPECTIVES: WAYS TO UNDERSTAND CHRONIC ILLNESS
PREVENTION OF CHRONIC ILLNESS THROUGH HEALTH PROMOTION
HELPING FAMILIES LIVE WITH CHRONIC ILLNESS
FAMILY NURSING INTERVENTION DURING CHRONIC ILLNESS
CASE STUDIES: FAMILIES LIVING WITH CHRONIC ILLNESS
SUMMARY
Chapter 10 Families in Palliative and End-of-Life Care
PALLIATIVE AND END-OF-LIFE CARE DEFINED
KEY CONSIDERATIONS IN PALLIATIVE AND END-OF-LIFE CARE
FAMILY NURSING PRACTICE ASSESSMENT AND INTERVENTION
PALLIATIVE CARE AND END-OFLIFE FAMILY CASE STUDIES
SUMMARY
Chapter 11 Trauma and Family Nursing
THEORY APPLIED TO PTSD
EARLY TRAUMA
FAMILY TRAUMA
COMMUNITY AND TRAUMA
SYSTEMIC TRAUMA
NURSES AND TRAUMA
SUMMARY
Unit 3 Nursing Care of Families in Clinical Areas
Chapter 12 Family Nursing With Childbearing Families
THEORY-GUIDED, EVIDENCE-BASED CHILDBEARING NURSING
CHILDBEARING FAMILY STRESSORS
THREATS TO HEALTH DURING CHILDBEARING
FAMILY NURSING OF POSTPARTUM FAMILIES
POLICY IMPLICATIONS FOR FAMILY NURSING
FAMILY CASE STUDIES
SUMMARY
Chapter 13 Family Child Health Nursing
ELEMENTS OF FAMILY-CENTERED CARE
CONCEPTS OF FAMILY CHILD HEALTH NURSING
NURSING INTERVENTIONS TO SUPPORT CARE OF WELL CHILDREN AND FAMILIES
CARE OF CHILDREN WITH CHRONIC ILLNESS AND THEIR FAMILIES
CONSENT IN FAMILY CHILD HEALTH NURSING
CARE OF CHILDREN AND FAMILIES IN THE HOSPITAL
SUMMARY
Chapter 14 Family Nursing in Acute Care Adult Settings
FAMILIES IN CRITICAL CARE UNITS
FAMILIES IN MEDICAL-SURGICAL UNITS
END-OF-LIFE FAMILY CARE IN THE HOSPITAL
SUMMARY
Chapter 15 Family Health in Mid and Later Life
LIFE COURSE PERSPECTIVE
PROFILE OF AGING FAMILIES
FAMILY CAREGIVING
CARE SETTINGS
SUMMARY
Chapter 16 Family Mental Health Nursing
MENTAL HEALTH CONDITIONS IN THE UNITED STATES AND CANADA
FAMILY MEMBERS OF INDIVIDUALS WITH A MENTAL HEALTH CONDITION
FAMILIES OF INDIVIDUALS WITH A SPECIFIC MENTAL HEALTH CONDITION
ROLE OF THE FAMILY MENTAL HEALTH NURSE
SUMMARY
Chapter 17 Families and Community/ Public Health Nursing
WHAT IS COMMUNITY/PUBLIC HEALTH NURSING?
HEALTH PROMOTION FRAMEWORKS, STANDARDS, AND PRINCIPLES
SETTINGS WHERE COMMUNITY/ PUBLIC HEALTH NURSES WORK
COMMUNITY/PUBLIC HEALTH NURSING ROLES WITH FAMILIES AND COMMUNITY
TRENDS IN PUBLIC HEALTH
SUMMARY
Appendix A Family Systems StressorStrength Inventory (FS3I)
INSTRUCTIONS FOR ADMINISTRATION
FAMILY SYSTEMS STRESSORSTRENGTH INVENTORY (FS3I) SCORING SUMMARY
QUALITATIVE SUMMARY FAMILY AND CLINICIAN REMARKS
Appendix B The Friedman Family Assessment Model (Short Form)
IDENTIFYING DATA
DEVELOPMENTAL STAGE AND HISTORY OF FAMILY
ENVIRONMENTAL DATA
FAMILY STRUCTURE
FAMILY FUNCTIONS
FAMILY STRESS, COPING, AND ADAPTATION
INDEX
INDEX
