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366
Physioth
e
rapy Canada 2020; 72(4); 366–373; doi:10.3138/ptc-2019-0040
ABSTRACT
Purpose: Currently, there is a paucity of research describing physiotherapy services for individuals with multiple sclerosis (MS) in Canada. Using qualitative
methods, we aimed to develop a survey to examine physiotherapy practice patterns for people with MS receiving services in Canada. Method: We began
by conducting a review of the current literature and combining participatory action research methods with the expertise of registered physiotherapists and
individuals with MS. Semi-structured interviews were conducted with 10 participants to obtain their input into survey development. The interviews were
then transcribed verbatim and analyzed thematically. Results: Five key themes emerged from the thematic analysis: (1) provide additional answer options,
(2) reformat or clarify questions, (3) ensure that questions or options are appropriate, (4) ensure good readability and flow, and (5) determine the appropriate
length of the survey. After a final revision, the survey consisted of 24 items in the following domains: demographics, MS programme and patient population,
interdisciplinary care, and programme and service barriers. Conclusions: This survey is the first of its kind in Canada and is the first step toward improving
the quality of health of people living with MS and the effectiveness of current physiotherapy practices for them.
Key Words: health services; multiple sclerosis; physical therapy modalities; rehabilitation, surveys and questionnaires.
RÉSUMÉ
Objectif : très peu d’études portent sur les services de physiothérapie pour les personnes atteintes de sclérose en plaques (SP) au Canada. À l’aide de
méthodes qualitatives, la présente étude visait à préparer un sondage sur les modes d’exercice de la physiothérapie pour la SP au Canada. Méthodologie :
analyse des publications à jour et combinaison de méthodes de recherche-action participatives avec les compétences de physiothérapeutes diplômés
et de personnes atteintes de SP. Les chercheurs ont réalisé des entrevues semi-structurées avec dix participants pour obtenir leur avis sur l’élaboration
du sondage. Les entrevues ont ensuite été transcrites textuellement, puis analysées par thèmes. Résultats : cinq thèmes principaux ont émergé de
l’analyse thématique : 1) fournir d’autres possibilités de réponses, 2) reformuler ou clarifier les questions, 3) s’assurer que les questions ou les options
sont appropriées, 4) s’assurer d’une bonne lisibilité et d’un bon enchaînement et 5) déterminer la bonne longueur du sondage. Après la dernière révision, le
sondage se composait de 24 points dans les domaines suivants : démographie, programme pour la SP et population de patients, soins interdisciplinaires et
obstacles aux programmes et aux services. Conclusion : le sondage est le premier du genre au Canada et représente la première étape vers l’amélioration
de la qualité de vie des personnes ayant la SP ainsi que de l’efficacité des pratiques actuelles de physiothérapie auprès d’elles.
Mots-clés : modalités de physiothérapie; réadaptation; sclérose en plaques; services de santé; sondages et questionnaires
ARTICLE
Use of Participatory Action Research in the Development
of a Survey of Physiotherapy Services for People with
Multiple Sclerosis in Canada
Ayse Kuspinar , PT, PhD ; * Vanina Dal Bello-Haas , PT, PhD ; * Diana Liu , PT ; *
Karen Essah , PT ; * Lily Cao , PT ; * Michelle Ploughman , PT, PhD †
From the: *School of Rehabilitation Science, McMaster University, Hamilton, Ont.; †Faculty of Medicine, Memorial University of Newfoundland, St. John’s, Nfld.
Correspondence to: Ayse Kuspinar, School of Rehabilitation Science, McMaster University, 1400 Main St. W., Room 435, IAHS, Hamilton, ON L8S 1C7;
kuspinaa@mcmaster.ca.
Contributors: All authors designed the study; or collected, analyzed, or interpreted the data; and drafted or critically revised the article and approved the final draft.
Competing Interests: None declared. This research was supported in part by the Neuroscience Division – Physiotherapy Foundation of Canada Joint Award for
Physiotherapy Research in the Neurosciences.
Acknowledgements: The authors thank Shanna Wilson for her initial contributions to the study.
Multiple sclerosis (MS) is a chronic autoimmune dis-
order of the central nervous system that causes demye-
lination of the motor and sensory neurons; as a result, it
is a major contributor to neurological disability, primar-
ily in individuals aged 20–50 years. 1 The data from a 2013
worldwide epidemiology study showed that Canada has
one of the highest rates of MS in the world, with a preva-
lence of approximately 1 in 340 people. 1,2 Individuals with
MS experience a wide variety of impairments: fatigue;
bladder dysfunction and sensory disturbances; limita-
tions in activity, including impaired mobility and reduced
exercise tolerance; and restrictions on their participation
in social activities, work, and leisure. 3
Not only does MS affect individuals’ physical daily
function, it also affects their economic productivity, espe-
cially because it most often strikes during their primary
working years. 4 Functional losses result in a significant
financial burden on individuals, their family or caregiver,
mailto:kuspinaa@mcmaster.ca
https://doi.org/10.3138/ptc-2019-0040
https://www.utpjournals.press/loi/ptc
Kuspinar et al.
367
the health care system, and society. A Canadian epide-
miology and economic study estimated that the total per
capita cost of health care for adults (aged >20 y) with MS
was approximately $16,800 in 2011 compared with $2,500
for individuals without a neurological disease. 5 Moreover,
especially among people with MS who had greater dis-
ability, the use of health care services rose as productivity
declined. 4 By 2031, the annual health sector costs associ-
ated with MS in Canada are expected to reach $2 billion. 5
Medical treatment for MS is challenging because it
has no known cure. 6 However, the introduction of disease-
modifying drugs in the mid-1990s has helped miti-
gate the effects of MS by decreasing the regularity of
relapses and impeding the progression of the disease. 2,6
MS can optimally be managed using a multidisciplinary
approach, and physiotherapists play a key role as rehabil-
itation experts. 2,3 A recent systematic review of systematic
reviews found strong evidence to support the benefits of
non-pharmacological interventions such as physiother-
apy in improving functional outcomes, reducing fatigue,
and enhancing the quality of life of individuals with MS. 3
An environmental scan that explores the structure
(e.g., type and dosage of interventions) and organiza-
tion (e.g., setting, process of referral, funding source) of
physiotherapy services for MS was recently conducted in
Europe. 7 An environmental scan is the acquisition and
use of data to provide evidence about the directions of
a profession, help plan for the future, raise awareness of
issues, initiate a project, or all of these. 8 For example, in
a study of 17 European rehabilitation centers, 7 patients
who experienced improved mobility had received phys-
ical rehabilitation that involved aerobic and resistance
training rather than passive stretching, suggesting that the
focus of the intervention mattered. However, despite the
extensive research supporting the benefits of physiother-
apy services in managing MS, there are no Canadian data
describing the type of services provided, therapy environ-
ments (e.g., home, clinic, hospital), intensity or duration
of treatment programmes, outcome measures, or degree
to which clinicians use evidence-based practices. 3
Cross-sectional surveys have proved useful for map-
ping physiotherapy service and practice patterns in Can-
ada for other conditions, including diabetes, obesity,
chronic obstructive pulmonary disease, and low back
pain. 9 – 12 Their results report on the demographics and
statistics of patient populations, best practice methods,
and the still-existing limitations of the physiotherapy
approaches used in treating these conditions. This infor-
mation helps to guide the development of new roles and
practice patterns. 9,13
Such surveys have the potential to inform future ser-
vices and guide the design of new programmes and treat-
ment protocols. They identify the barriers that impede
the delivery of adequate services, which can also help
direct advocacy efforts to promote systemic changes at
all organizational levels to advance the physiotherapy
services available for the care of patients with MS. 14 In
addition, an awareness of the organizational context of
physiotherapy service delivery informs current practice
guidelines, allowing researchers to determine the appli-
cability and feasibility of the parameters used in clinical
trials across various settings and jurisdictions. 7
Although growing evidence supports the effectiveness
of rehabilitation in MS, 15 knowledge about the specific
physiotherapy services that people with MS receive in
daily practice is lacking. 16 Currently, the organizational
structures and contexts of physiotherapy services and
treatments in the care of individuals with MS in Canada
are not known. Moreover, no data are available to confirm
the extent to which evidence-based interventions are
being implemented in routine practice. This knowledge is
foundational for improving the care of people with MS.
Hence, the objective of this study was to develop a survey
to determine what physiotherapy services and practice
patterns are currently available for people receiving MS
services in Canada. This survey would identify any gaps
in MS service delivery, recommend improvements at the
level of individual practising clinicians and at the orga-
nizational level, and ultimately improve the care experi-
ences of patients with MS.
Using a qualitative research approach, specifically
participatory action research (PAR), we engaged physio-
therapists and people with MS to construct the survey.
The PAR method involves identifying key community
participants as stakeholders in a research question, inter-
viewing them, and then analyzing their input. 17 It is a
cyclical process that combines two concepts: participa-
tory research, in which participants are involved in the
research process as members of the research team and
not as research subjects, and action research, in which
the findings are analyzed and used to address community
issues and influence social change. 17 We considered this
model appropriate for construction of a survey such as
ours because it ensured the equal contribution of partic-
ipants and researchers, shared learning, and the transfer
of expertise among members of the research team. 17
In addition, we used a conceptual framework based
on the Donabedian model to ensure that our survey was
comprehensive and to guide its overall development.
Mosadeghrad, in a review of conceptual models for
assessing the quality of health care delivery, 18 described
the Donabedian model as having three components:
structure, process, and outcome. 19 Structure is used to
examine the context within which care is provided, pro-
cess describes the interactions between health care pro-
viders and patients throughout the delivery of care, and
outcomes outline the effects of the health care provided
on patients. 19
To place our proposed survey in context, we conducted
a literature search and consolidated the findings from
368 Physiotherapy Canada, Volume 72, Number 4
Recruitment process
Inclusion criteria
Registered physiotherapists were eligible for inclu-
sion if they (1) practised in Canada and (2) were currently
delivering, or had previous experience delivering, physio-
therapy services to individuals with MS. Individuals with
MS were eligible for inclusion if they (1) resided in Can-
ada and (2) were currently receiving, or had previously
received, physiotherapy services delivered by registered
physiotherapists.
Participant selection
The participants were selected through purposeful
sampling to gather the relevant and informative feedback
that would best serve this project’s objective. Sampling
continued until data saturation was reached (no new
information was elicited). Clinician participants were
recruited through the Ontario Physiotherapy Association
(OPA), CPA, and word of mouth. An advertisement for the
study was placed in the electronic newsletter that CPA
and OPA send to all their members. Individuals with MS
were recruited through either a faculty member from the
McMaster University School of Rehabilitation Sciences or
two registered physiotherapists (with experience in neu-
rological rehabilitation and community settings).
At the end of this process, seven registered physiother-
apists and three individuals with MS were chosen to be
involved, following the PAR model, as part of the research
team and to act as key stakeholders by participating in
survey development.
Semi-structured interviews
We conducted 1-hour semi-structured interviews
with the participants by phone, over Skype, or in person
to explore their perspectives on the draft survey. Two
researchers on the team interviewed each participant.
Two separate interview guides were created: one for the
interviews with the clinicians and another for the inter-
views with the individuals with MS; these are reproduced
in online Appendix 2. Using these guides as a reference,
we asked the participants for their opinions on the format,
structure, content, and readability of each question on the
survey as well as their views on the survey as a whole. We
also asked them probing questions to encourage them
to elaborate on their answers. All participants agreed to
be recorded before contributing to the interviews. These
recordings were then transcribed verbatim by a third-party
transcriptionist, with identifying information removed.
Thematic analysis
Braun and Clarke’s approach to thematic analysis was
used to define the key themes that we extracted from the
consultation process. 25 Each interview transcript was
analyzed by at least two research team members to gen-
erate the initial codes. Any disagreements were resolved
through discussion with a third independent member
previous environmental scans that explored the practice
patterns for other chronic conditions in Canada. 9 – 13 We
aimed to create the first survey of how physiotherapy ser-
vices for MS are delivered in Canada.
METHODS
The Hamilton Integrated Research Ethics Board
exempted this project from formal ethics approval
because the recruited individuals were not under
study; their input was used only to develop the survey
questions.
Literature review
An initial literature search was conducted of MED-
LINE ( January 2008–April 2018) and CINAHL ( January
2008–April 2018) to determine the current landscape of
environmental scans of physiotherapy services for other
health conditions in Canada. MEDLINE was selected
because it includes more than 23 million citations from
more than 5,600 journals. 20 Similarly, CINAHL was
selected because it includes more than 6 million citations
from more than 5,300 journals. 21 The search strategy was
developed in collaboration with a health sciences librar-
ian. Detailed search strategies and keywords are outlined
in online Appendix 1.
We reviewed Canadian research from the past 10 years
that explored similar objectives to analyze recent studies
in a common health care system. Studies using the survey
or questionnaire approach to examining physiotherapy
services were used because they aligned with the objec-
tives of this research project. Two reviewers screened the
abstracts and then the full-text articles. They examined
the structure and content of the questions in those stud-
ies to uncover common characteristics, which were later
used as the foundation for this survey. A data extraction
form was developed and used to obtain the relevant infor-
mation from the full-text articles. Each reviewer identi-
fied key domains from the literature search, and then the
research team decided on the most relevant domains to
include in the draft version of the survey.
Draft version of survey
We drafted a 24-item questionnaire containing ques-
tions relevant to physiotherapy practices for people with
MS, guided by the results of the literature search, in par-
ticular the previously described environmental scan of
European physiotherapy services for people with MS. 7
The “Description of Physiotherapy” developed by the
Canadian Physiotherapy Association (CPA) was used
to standardize the terminology in the survey response
options, 22 and Statistics Canada terminology was used
to define population size. 23 Finally, the clinical practice
guidelines for the physiotherapy management of indi-
viduals with MS were used to develop a comprehen-
sive list of response options related to physiotherapy
treatment. 24
https://www.utpjournals.press/loi/ptc
Kuspinar et al. Use of Participatory Action Research in the Development of a Survey of Physiotherapy Services for People with Multiple Sclerosis in Canada 369
of the research team. The codes were then examined
and used to develop a coding structure and preliminary
themes, which were then refined and finalized by all
researchers.
Survey revision
After the thematic analysis was complete, the draft sur-
vey was revised to integrate the final themes. The survey
was then returned by email to the participants to deter-
mine whether the revisions accurately represented the
topics explored during the interviews. The survey was
finalized after considering the participants’ final feedback.
RESULTS
Literature search
The literature search process is shown in Figure 1 . A
total of 519 articles were identified in the databases; 67
duplicates were removed, 352 articles were removed
during title and abstract screening because they did not
meet the inclusion criteria (e.g., were not Canada spe-
cific, did not involve physiotherapy, or were irrelevant to
the research question), 71 articles were removed during
full-text screening (68 did not meet inclusion criteria, and
full text for 3 was not accessible). A total of 29 articles were
included in the final summary.
Survey development
The survey domains identified in the literature were
either eliminated or included after we had a rigorous dis-
cussion of the key elements required to fulfil the purpose
of our survey. For instance, the surveys used in the studies
asked questions about the demographics of the respon-
dents, which we applied to the demographics section of
our survey. They also consistently included the facilitators
of and barriers to receiving care, which we also incorpo-
rated into our survey. A third key domain was the for-
mat of the survey questions in the literature (e.g., closed
ended, open ended), which we used to inform the format
of our questions and response options.
The conditions or procedures described in the arti-
cles were cardiovascular disease, stroke, spasticity, hip
fracture, obesity, low back pain, hemophilia, chronic
pain, cerebral palsy, burns, HIV, diabetes, osteoarthritis,
Figure 1 Flow diagram of literature search.
Records identified
through database search
(n = 519)
Duplicates removed
(n = 67)
Title and abstracts
screened (n = 452)
Records excluded did not
meet inclusion criteria
(n = 352)
Articles assessed for
eligibility (n = 100)
Articles excluded did not
meet inclusion criteria
(n = 68) or not accessible
(n = 3)
Full-text articles included
(n = 29)
Full-text articles analyzed
(n = 29)
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370 Physiotherapy Canada, Volume 72, Number 4
chronic obstructive pulmonary disease, trauma, total
joint arthroplasty, post-cardiac surgery, and ventricu-
lar drains. In addition, one study involved smokers, and
another investigated critically ill children.
The literature search revealed no existing surveys per-
taining to physiotherapy services for individuals with MS
in Canada. However, studies involving individuals with
other conditions highlighted the key concepts involved
in developing a survey. For example, a trend across many
of the surveys was the use of closed-ended questions,
comprehensive answer options, and concise wording.
We used two components of the Donabedian model as
a framework for analyzing these trends (the outcomes
component was not relevant). 19 As a result, we orga-
nized our draft survey into two components: structure,
which consisted of questions on organizational struc-
ture and material and human resources, and process,
which included questions about practice patterns and
treatment.
Beta version of the survey
The resulting beta version of our Canadian Survey of
Physiotherapy Services for MS (CanPTMS) consisted of
24 items divided into five categories: (1) respondents’
demographics and practice setting (4 items), (2) MS pro-
gramme or service offered and the patient population
served (12 items), (3) use of an interdisciplinary team (3
items), (4) barriers to delivering MS programmes or ser-
vices (3 items), and (5) an additional open-ended feed-
back section (2 items). When possible, the answer options
were formatted as fixed responses to make the survey
respondent friendly and for ease of data analysis. Seven
items had open-response options to allow respondents to
elaborate on their answers.
Participant characteristics
The 10 participants provided feedback on the beta
version of the survey. Two people with MS reported
that they had been diagnosed with relapsing-remitting
MS, and one person had been diagnosed with second-
ary progressive MS. All participants with MS were from
central Canada, and the length of time since diagnosis
ranged from 6 to 40 years. The physiotherapists’ current
practice locations included the Prairie Provinces, cen-
tral Canada, and the Atlantic Region, with clinical expe-
rience ranging from 2.5 to 24 years. Physiotherapists
had experience in outpatient rehabilitation, inpatient
rehabilitation, outpatient clinic, and community-based
home care.
Thematic analysis
Five key themes emerged from our analysis of the
interview data: (a) provide additional answer options, (b)
reformat or clarify questions, (c) confirm that questions
or options are appropriate, (d) ensure good readability
and flow, and (e) determine the appropriate length of the
survey.
Provide additional answer options
We questioned the comprehensiveness of the answer
options and allowed participants to suggest additional
options. For 67% (16 of 24) of the survey questions, at
least one participant suggested adding an additional answer
option, and for 13% (3 of 24) of the questions, the major-
ity of the participants ( n > 5) suggested adding an addi-
tional answer option. Participants stated that the checklist
response options were not comprehensive enough. Within
this theme, several sub-themes were identified: (1) expand
types of treatment provided to include mental health
approaches, (2) include answers relating to transportation
and environmental barriers, and (3) consider caregiver edu-
cation and support.
I wouldn’t discount any of the other aspects and conse-
quences of the disease rather than just the physical –
looking more at the cognitive and emotional. (Multiple
Sclerosis [MS] 1)
I put down transportation … is always a big challenge …
might be one you want to tease out a bit. (Clinician [C] 2)
You could have in there as well the caregiver – caregiver edu-
cation, caregiver support. (C3)
Reformat or clarify questions
We reformatted or clarified 67% (16 of 24) of the sur-
vey questions on the basis of feedback from at least one
participant. The majority of participants ( n > 5) thought
that one question required reformatting or clarification.
Two questions created the most uncertainty: one asked
about managing MS in terms of acute treatment versus
chronic management, and the other asked about treating
mild, moderate, and severe MS. The participants thought
that asking questions that grouped aspects of MS care
together was confusing.
It’s kind of hard to have manag[ing] acute and chronic at the
same time, you are doing one or the other … that might
need to be separate[d]. (C1)
Because my definition of mild, moderate, severe could be
different than someone else’s definition of mild, moder-
ate, severe. Are you using a certain scale that’s going to
help differentiate that? (C1)
Confirm that questions or options are appropriate
The participants were satisfied with the response
options overall. Every participant ( 10) commented that
at least one question was appropriate without edits.
The majority of the participants ( n > 5) commented that
42% (10 of 24) of the questions were appropriate with-
out edits. Many items on the survey draft were deemed
appropriate and relevant to the overall survey purpose.
For example, as feedback for a question about the types
of treatment provided by physiotherapists, several
participants believed that the options provided were
appropriately exhaustive.
I thought you offered a lot of options there. … I think that’s
really good. (C3)
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Kuspinar et al. Use of Participatory Action Research in the Development of a Survey of Physiotherapy Services for People with Multiple Sclerosis in Canada 371
Ensure good readability and flow
According to our interview guide, we asked partici-
pants open-ended questions about the survey’s readabil-
ity and flow, which allowed them to provide both positive
and constructive comments. Eighty percent (8 of 10) of
the participants were satisfied with the clarity and orga-
nization of the survey; therefore, only we made minor
changes.
I actually liked how you had your headings, because that
made it kind of easier to work your way through because
it’s a longer question … so the headings were really help-
ful. (C1)
Determine the appropriate length of the survey
Sixty percent (6 of 10) of the participants reported that
the length of the survey was appropriate and that the sur-
vey gathered all the relevant information concisely.
It wasn’t very long, which is always greatly appreciated. (C2)
It’s clear, and it didn’t take too long to answer. (C4)
I wouldn’t break it down lengthier to make another ques-
tion. (P3)
Final survey
After holding discussions among the research team
members, we finalized the survey to reflect the themes
gathered from the interviews. We provided additional
answer options for the questions relating to practice set-
ting, funding, referrals, treatment, and barriers to receiv-
ing physiotherapy care. We reformatted the survey items
and answer options relating to referrals, the details of the
MS programmes and services provided, and the resources
used to inform physiotherapy practice. Other changes
were made throughout the survey on the basis of feedback
from individual participants that had not developed into
themes but that the research team considered relevant.
Member checking was conducted by emailing the final
survey to participants, asking whether the survey edits
represented the feedback they had provided, and request-
ing any additional comments on the final survey. Of the
10 participants, 1 responded with additional feedback;
however, after considering that feedback, we made no
further changes to the survey. The final survey consisted
of 24 questions to collect the following data: demograph-
ics, MS programme and patient population, interdisci-
plinary care, and programme and service barriers. The
final survey is reproduced in online Appendix 3.
DISCUSSION
The evidence to support the effectiveness of MS reha-
bilitation interventions is growing; 15 however, knowledge
of what specific physiotherapy services people with MS
receive is uncertain and has been described as a “black
box.” 16 Considering the high rate of MS in Canada, we
were surprised to find that no previous environmental
scans had been conducted for this population. 1 There
could be several explanations for why so little information
on rehabilitation services is available. For example, envi-
ronmental scans require extensive resources to recruit
enough respondents to generate representative results. In
addition, because MS symptomatology is highly hetero-
geneous, the treatment parameters and practice patterns
likely vary accordingly, making it challenging to collect
and compile data. 6,26
Although previous studies have included surveys and
environmental scans of services for people with other
chronic conditions, our literature search revealed no evi-
dence of their survey development processes or evalua-
tion. However, in 2019 Wilson and colleagues developed a
survey to describe the practice patterns of Canadian phys-
iotherapists regarding gait rehabilitation in adults with
acquired brain injury. 27 That questionnaire was developed
using the available literature and input from physiother-
apists and researchers with expertise in acquired brain
injury rehabilitation. As in that study, we reported our
survey development methodology, which included invit-
ing clinicians and people with MS to become research
team members and incorporating their perspectives. The
final CanPTMS survey will be used to map physiotherapy
services for people with MS in Canada.
PAR provides a framework by which members of the
target community become active members of a research
team. 28 The PAR process we used was unique because it
incorporated physiotherapists and people with MS as
intimate knowledge providers, researchers, and research
participants. It prevented a detached method of research
by encouraging reflexivity and active learning from all
team members (persons affected by MS, clinicians, and
academic researchers), probing at a deeper level the
meaning of what it is like to live with MS, the barriers that
impede the delivery of adequate services, and the services
available. Team members living with MS raised points
that other members of the team had not considered, such
as treatment for cognition and emotional well-being, as
well as the common difficulties faced by individuals with
MS with respect to accessible transportation and facili-
ties. We are not aware of any previous research that has
used PAR methods in developing a survey, and our results
provide important foundational data for future research
undertaking such a participatory approach.
A large volume of research has examined physiother-
apy practices for individuals with other health conditions,
so one would think that modifying previous surveys to
map the existing services for MS would be straightfor-
ward. 9 – 12 In fact, although there was some overlap with
the questions used in other surveys, our results show
that some services and physiotherapy practice patterns
are unique to individuals living with MS. 7 By examining
our survey questions using the structure and process ele-
ments of the Donabedian model, which was developed
specifically for examining health care services, we were
372 Physiotherapy Canada, Volume 72, Number 4
able to uncover four key areas that require attention to
improve clarity and comprehensiveness for clinicians and
individuals with MS: (1) the uniqueness of clinicians pro-
viding services (e.g., level of expertise, practice setting),
(2) who receives physiotherapy services and how these
services are provided (e.g., patient population, referral
processes), (3) interdisciplinary care, and (4) perceived
barriers and needs.
This study had several limitations. The first relates to
using the Donabedian model as a framework for devel-
oping our survey. Despite its many strengths, this model
also has certain disadvantages. Its components progress
in a linear fashion from structure to process to outcomes,
and this progression limits researchers’ ability to recog-
nize the interplay among these components and their
influence on each other. 19 Nevertheless, implementing an
established conceptual framework provided a structure
for our survey. 18
Second, our sample may provide a limited represen-
tation of people with MS, which may affect the survey’s
generalizability. Only MS patients who responded to
recruitment postings were contacted for the interview,
and all the people with MS whom we consulted had
received MS-related physiotherapy services at some
point. This means that there was no representation from
people with MS who had no access to or experience with
the appropriate services. We chose this approach because
of the time restraints and resources available to us; it had
the added advantage of being simple and cost efficient.
A third limitation relates to using the PAR approach.
Participants are crucial to the PAR process; however, it
was difficult to recruit a wide enough sample of individu-
als and clinicians who were interested in participating in
the project. This is likely a result of the extensive level of
participation and time commitment required. However,
despite the small number of participants we recruited, we
approached a saturation of themes because participant
feedback included consistent repetition.
Finally, we did not include administrative members of
physiotherapy clinics or hospitals in survey development.
One or more physiotherapists with an administrative role
will be recruited during the pilot testing phase of the sur-
vey. Moreover, clinicians and patients were not involved
in the literature review or development of the initial draft
of the survey. This was due to the difficulties of includ-
ing participants in the literature review process and data
extraction.
CONCLUSION
We developed a survey to examine the current phys-
iotherapy practice patterns of physiotherapists treating
individuals with MS in Canada. As part of the future direc-
tions of this research, we will continue to test the survey,
then distribute it to physiotherapists across Canada to
conduct an environmental scan that will address the
current gap in our knowledge of the physiotherapy ser-
vices available for individuals with MS in Canada.
Considering that physiotherapists play a crucial role
in the management of MS, our survey asks questions
that capture the scope of how physiotherapy service is
delivered to individuals with MS. This study presents
the first Canadian survey to explore the current practice
patterns of physiotherapists and the delivery of MS ser-
vices nationwide using the Donabedian model and a PAR
approach in its development.
KEY MESSAGES
What is already known on this topic
Currently, there is a paucity of research describing the
physiotherapy services available to individuals with mul-
tiple sclerosis (MS) in Canada and the practice patterns of
the physiotherapists who treat them.
What this study adds
This study presents the first Canadian survey to explore
the current practice patterns of physiotherapists nation-
wide and how they deliver MS services. It is also unique
in that it used participatory action research methodol-
ogy and followed the Donabedian model. The informa-
tion gathered through the survey will be the first step in
improving the quality of health of people with MS and the
effectiveness of current physiotherapy practices for them.
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The Open Journal of Occupational Therapy
Volume
7
Issue 3 Summer 201
9
Article
4
7-15-2019
The Impact of Cognitive Functioning on Daily
Occupations for People with Multiple Sclerosis: A
Qualitative Study
Aoife Mc Auliffe
National University of Ireland Galway, aoife.mcauliffe2019@gmail.com
Sinéad M. Hynes
National University of Ireland, Galway, sinead.hynes@nuigalway.ie
Follow this and additional works at: https://scholarworks.wmich.edu/ojot
Part of the Occupational Therapy Commons
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Recommended Citation
Mc Auliffe, A., & Hynes, S. M. (2019). The Impact of Cognitive Functioning on Daily Occupations for People with Multiple Sclerosis:
A Qualitative Study. The Open Journal of Occupational Therapy, 7(3), 1-12. https://doi.org/10.15453/2168-6408.1579
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The Impact of Cognitive Functioning on Daily Occupations for People
with Multiple Sclerosis: A Qualitative Study
Abstract
Background: Cognitive rehabilitation research in multiple sclerosis is ever-developing, but the impact of cognitive
difficulties, seen in 40% to 80% of people, on daily occupations is not well known. The aim of this study is to explore the
needs of people with MS who have self-reported cognitive deficits.
Methods: An exploratory qualitative descriptive research design was used. Data was collected through semi-structured
telephone interviews with the participants. Recordings were transcribed and analyzed thematically.
Results: Seven participants were recruited (mean age 47). Three themes were developed through associations found in
the data. “Neglected symptom” reported the participants’ frustrations around the importance afforded to cognition by
health care providers. “Impact on participation in daily occupations” described the everyday impacts of cognitive
difficulties. “Adaptations and adjustments to continued participation” reported how the participants manage, despite
their difficulties.
Conclusion: The findings describe how cognitive difficulties affect individuals with multiple sclerosis and their
occupations, as well as the dissatisfaction felt with the progress in and access to cognitive treatment and research. The
results indicate the need for occupation-focused interventions in cognition for people with multiple sclerosis that address
daily challenges.
Comments
The authors report that they have no conflicts of interest to disclose.
Keywords
multiple sclerosis, cognition, activities of daily living, occupational therapy
Credentials Display
Aoife Mc Auliffe, OTS; Sinéad M. Hynes, PhD, BSc (Hons), Occupational Therapy
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DOI: 10.15453/2168-6408.1579
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Multiple sclerosis (MS) is a chronic autoimmune disorder of the central nervous system
(Hakim et al., 2000). It impacts approximately two million people worldwide (Connick, Chandran,
& Bak, 2013), and the severity of the condition and the persistence of symptoms vary. Individuals
with MS can experience many symptoms, such as mobility issues, speech difficulties, fatigue,
visual impairment, spasticity, sensory issues, and cognitive impairment (Schiavolin et al., 2013). An
online survey carried out on 4,639 people by the Multiple Sclerosis International Federation
(Multiple Sclerosis International Federation [MSIF], 2013) found 80% of participants experienced
cognitive difficulties. Concentration and difficulty remembering were found to be the problems that
had the greatest impact on life for 70% of the people surveyed (MSIF, 2013).
Cognitive difficulties and fatigue with MS are associated with an increased likelihood of
being unemployed (Glanz et al., 2012). Honan, Brown, and Batchelor (2015) found that a decreased
speed of information processing was a significant predictor of unemployment and decreased work
hours for people with MS. They reported that impaired or delayed recall was the most significant
predictor of decreased working hours. The results of the study also found that an individual’s
perceived cognitive deficits can predict poor work outcomes, regardless of the individual’s
objective performance on cognitive assessments (Honan, Brown, & Batchelor, 2015).
Slowed information processing in people with MS was also found to be a determinant of
vocational problems or unemployment in a review by Raggi et al. (2015). Roessler, Rumrill, and
Fitzgerald (2004), in a sample of 1,310 participants with MS, found that participants who reported
the presence of cognitive impairments were 49% more likely to be unemployed than those who did
not have cognitive issues. A study by Benito-León (2003) also reported that individuals with
cognitive impairments due to MS were less likely to be employed. Shevil and Finlayson (2006)
reported on the impact on educational performance in a study with four participants. They found
that participants reported difficulty in succeeding in higher level education because of being unable
to focus in lectures and being easily distracted. It is important to note, however, that participants
with MS who are still working often score higher on cognitive assessments (Beatty, Blanco,
Wilbanks, Paul, & Hames, 1995) than those who are not working.
The number of studies in the area of cognitive rehabilitation has grown significantly since
2007 (Goverover, Chiaravalloti, O’Brien, & DeLuca, 2017). There have been studies targeting
cognitive training with people with MS, particularly computerized training, but a systematic review
by Yu and Mathiowetz (2014a) only found moderate evidence of effectiveness and very focused
benefits (e.g., improvements in one cognitive area with little transfer to daily life). The long-term
benefits of cognitive rehabilitation in MS are not yet evident (Yu & Mathiowetz, 2014a) and may
be shown with the passing of time. Existing evidence-based strategies include the modified Story
Memory Technique (Chiaravalloti, Moore, Nikelshpur, & DeLuca, 2013) and self-generation
techniques (Chiaravalloti & De Luca, 2002), which have been proven effective for people with MS.
It is essential that the effect of cognitive difficulties from the perspective of people with MS
are demonstrated, given the impact they have (Glanz et al., 2012). Although we are aware that
impaired cognition can be a significant cause of disability in individuals with MS (Baumstarck-
Barrau et al., 2011), and there is emerging evidence on effective rehabilitation techniques (Yu &
Mathiowetz, 2014a), it is essential to understand the full effect cognitive difficulties can have on the
everyday lives of people with MS. Shevil and Finlayson (2006) began this process but a new
exploration of the topic is required, as the treatments, technologies, and life demands have changed
in the past 10 years (Goverover et al., 2017). There is a need to understand the current experiences
of people with MS so that interventions can be targeted to the needs of the population in order to
address the challenges experienced by this group of people. There has been a recent call by a group
1
Mc Auliffe and Hynes: The unmet needs of persons with MS with subjective cognitive difficulties: A qualitative study
Published by ScholarWorks at WMU, 2019
of clinicians, researchers, and people with MS for remedial interventions and accommodations to
allow for improved functioning at home, work, or school for people with MS (Kalb
et al., 2018). In order to target the right interventions, we need to identify the needs of this group.
The aim of this study is, therefore, to explore the needs of people with MS who have self-reported
cognitive deficits.
Method
This qualitative study uses an exploratory descriptive research design to allow better
understanding without providing a solution (Sandelowski, 2000).
Participant Selection
Inclusion criteria were: (a) diagnosis of MS, (b) have self-reported cognitive difficulties, (c)
aged 18 years or older, and (d) fluent in English. The term cognitive difficulties was explained in
the participant information sheet. The participants identified themselves (self-reported) with
guidance from the participant information sheet and discussions with the researcher, if they were
experiencing difficulty with cognition, including memory, attention, learning new information,
and/or organization.
Following ethical approval from the National University of Ireland in Galway on April 3,
2016, a link to the study information was made available on the MS Ireland website and also on the
MS Ireland Facebook page. The participants contacted the research team through email or by phone
if they were interested in participating. The participants were asked to self-rate the level of cognitive
difficulty they were experiencing. They were asked whether they consider their cognitive difficulties
as having a mild, moderate, or severe effect on their daily activities. The Multiple Sclerosis
Neuropsychology Questionnaire (MSNQ) (Benedict et al., 2004) was then administered over the
phone, and the participants were included if they scored > 23, as recommended by Benedict et al.
(2004). Benedict et al. reported that self-report on the MSNQ is correlated with scores on
neuropsychological tests that validated the inclusion/exclusion of the participants in
the study.
Data Collection
We used a semi-structured telephone interview consisting of 14 questions (see Appendix).
The interview guide was developed based on previous research in the area (Shevil & Finlayson,
2006) and clinical experience, and was guided by the research aims. Interviews began with an
explanation and clarification of the term cognition. Questions addressed the effects of cognitive
difficulties on occupations.
The interview was piloted with three separate participants to check for timing, ease of use,
and understanding. Changes were suggested during piloting to the way in which questions were
phrased to improve clarity of the questions. There were no changes made to the content of the
questions. The interview guide was also approved by the ethics committee prior to piloting and use in
the study. The pilot participants’ data was not included in the study or in the reported data.
Telephone interviews were used in an effort to decrease overall expenses and also to access
the participants in wider, dispersed areas (Novick, 2008). As individuals with MS sometimes have
difficulty with driving (Pakenham, Tilling, & Cretchley, 2012), fatigue (Finlayson, Preissner, & Cho,
2012), and using public transportation (Kobelt, Berg, Lindgren, Fredrikson, & Jönsson, 2006), it was
hoped that telephone interviews would eliminate these issues and encourage a larger number of
individuals to participate. Interviewing through the medium of telephone can also increase the quality
of the data as the interviewee may be more forthcoming with information as a result of the
anonymity provided by the telephone (Drabble, Trocki, Salcedo, Walker, & Korcha, 2016).
The telephone interviews took, on average, 30 min and were recorded using a Dictaphone®.
Recording the telephone interviews allowed for an authentic and precise record of the interviews and
2
The Open Journal of Occupational Therapy, Vol. 7, Iss. 3 [2019], Art. 4
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DOI: 10.15453/2168-6408.1579
allowed the interviewer to focus completely on the discussion (Witzel, 2000). Recordings were
transcribed verbatim immediately following each interview. Member checking was not possible due
to time constraints, but coding samples were checked by both authors to ensure the essence of the
transcript could be detected in the sampling of coding provided.
Data Analysis
The open-ended interview questions were analyzed using inductive thematic analysis.
Thematic analysis was chosen, as recommended by Boyatzis (1998), to identify, analyze, and report
themes related to the data. This approach enabled the participants’ perceptions of how cognitive
difficulties impact their occupations to be examined in detail and then interpreted (Polgar & Thomas,
2013). Analysis was completed by the first author, who carried out the interviews in consultation
with the second author. QDA Miner Lite version 1.3.4. (Provalis Research, 2014) software was used
for analysis of the interview data. The demographic data gathered were entered into Microsoft Excel
and analyzed descriptively. The researcher used QDA Miner Lite version 1.3.4 software to organize
the data (Provalis Research, 2014). The researcher followed guidelines set out by Braun and Clarke
(2006) to carry out the analysis.
Phase 1: The researchers familiarized themselves with the collected data through reading and
rereading the transcribed interviews.
Phase 2: The production of initial codes took place by the researcher (AMcA) immersing
themselves in the data.
Phase 3: The researcher (AMcA) analyzed the identified codes and grouped them into candidate
overarching main themes and sub-themes.
Phase 4: During this phase, the researcher (AMcA) reread the transcripts and reviewed the
identified themes. Some themes were merged, some were dropped, and some remained
the same. This was done in consultation with supervisor (SH).
Phase 5: Sub themes were defined and refined by the researchers during this phase. The essence
of each theme was identified by the researcher and named. A thematic map was
produced during this phase. An example of the thematic map is shown in Table 1.
Phase 6: This stage involved the researcher’s analysis (AMcA in consultation with SH) and write
up. This involved coherent, concise analysis of the themes, supported by evidence; in
this case, quotes from the transcribed interviews with the participants. A concise
summary was produced.
Table 1
Data Analysis: Thematic Map Example
Quote Code Sub-theme Theme
“He was calling me and I said ‘(child’s name) sit
down and go to sleep’ instead of saying ‘just have
your shower’. But he just laughed when I was trying
to enforce some little bit of discipline.”
Difficulty with
discipline
Impact on
parenting
Impact on
participation in
daily occupations
“I have loads of books to read but it takes me an
awful lot longer to read a book because I keep
having to go back over to remember the plot.”
Difficulty
reading
Hobbies/Interests Impact on
participation in
daily occupations
“Trying to sift through things and put them in any
sort of constructive order is extremely difficult.”
Unable to
organize oneself
Impact on
employment
Impact on
participation in
daily occupations
“It’s very hard to sit down and concentrate. I could
read the same sentence 20 times and I still couldn’t
tell you what the sentence said.”
Difficulty
concentrating
Impact on
education
Impact on
participation in
daily occupations
3
Mc Auliffe and Hynes: The unmet needs of persons with MS with subjective cognitive difficulties: A qualitative study
Published by ScholarWorks at WMU, 2019
The data analysis included the following checks to increase its trustworthiness:
Credibility was demonstrated in this study through external checks of the inquiry
process. This was achieved by reviewing and piloting the interview schedule, as
recommended by Chwalisz, Shah, and Hand (2008).
Bracketing was also used (Chwalisz, Shah, & Hand, 2008). Here, the researcher (AMcA)
took time before beginning the research process to reflect on any ideas or beliefs she
may have had. A reflective diary was kept by the researcher AMcA for the duration of
the study.
Transferability was demonstrated by providing sufficient description of the study so that
it can be replicated (Krefting, 1991) in future studies, including the provision of the
interview guide.
All data in the study were recorded and transcribed verbatim as each experience is
considered important (Krefting, 1991).
The process and content of the study was audited by the second author (SH) to reduce
potential inquirer bias (Chwalisz et al., 2008).
Results
Seven individuals (five female, two male) with clinically diagnosed MS and self-reported
cognitive difficulties were recruited to the study. All of the participants who contacted the
researcher fit the eligibility criteria. Only one recruitment announcement was sent through MS
Ireland due to time constraints as this research project was done as part of a final year thesis. The
participants had a mean age of 47 with a range from 23 to 59 years. Three of the participants
described their difficulties with cognition as mild, while four reported moderate difficulties.
Demographic data are shown in Table 2.
Table 2
Demographic Data
Three themes emerged following analysis:
1. Neglected symptom
2. Impact on participation in daily occupations
3. Adaptations and adjustments to continued participation
Neglected Symptom
None of the participants in the study reported receiving treatment for their cognitive
difficulties. They stated that they had not been offered any treatment in this symptom area, despite it
having an impact on their lives. The participants also felt that it was a neglected area and that it
deserved “more recognition and awareness, really. It is a big problem” (PC).
Participant Age Gender Type of MS Employment Status MSNQ
PA 59 Male Relapsing-remitting (RR) Retired 24
PB 58 Female RR Retired 30
PC 52 Female RR Retired 28
PD 53 Female RR Retired 23
PE 28 Female RR Employed (full-time) 24
PF 56 Male RR Retired 26
PG 23 Female RR Student 28
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The participants reported being dissatisfied with research, knowledge, treatments, and
progress made with regard to cognition and MS. There was a feeling that cognition was not
addressed adequately by health care providers and that it was not taken “seriously enough.” “It is
been long-neglected and is finally out of the MS closet” (PF). The participants detailed that physical
symptoms were treated routinely but that this was not the case for cognitive difficulties, despite the
need and the emerging evidence to suggest that more research has been done in the area.
PE explained that due to the lack of neuropsychologists, assessment and treatment are
delayed until cognition is severely affected. “It’s not until you are in a very severe state with your
cognition that you actually get attention and by then it is too late anyway.”
All of the participants emphasized the importance of recruiting more health professionals
who are trained to work with people with MS who have cognitive difficulties.
Impact on Participation in Daily Occupations
The participants spoke about how their cognitive difficulties impacted negatively on their
employment, education, parenting, and meaningful hobbies. Five out of the seven participants
interviewed were not working, despite being of working age. All of the participants who described
themselves as being “retired” took early retirement due to difficulty keeping up with the demands of
the job. Three of the participants stated fatigue as their reason for their early retirement. Two of the
participants stated that increasing cognitive difficulties led them to retire early, such as PB, who
retired due to decreasing organizational skills and difficulty concentrating on tasks. Another
participant found multi-tasking an issue. His memory was affecting his ability to do his job
competently. He found his information processing speed was impacting his work.
I have lost the ability to multi-task, losing the details as I move from one thought/task to
another. It began to take me much longer to accomplish much less work. I couldn’t recall
names of clients, points of conversation…I could not be interrupted during a telephone call,
typing or in a conversation, without losing my train of thought. (PF)
One participant detailed her difficulties while enrolled in a university. She found that her
concentration and attention problems were negatively impacting her ability to complete assignments
and be attentive during lectures.
I’m listening but I am not hearing or I am hearing but I am not listening you know that kind of
way. Like I can hear the lecturer talk but nothing is going through . . . . my processing of
information is very slow. (PG)
Six of the participants in this study had children, and half of these participants stated that their
cognition impacted parenting. The experiences ranged from taking the wrong route to school to
disciplining a child while experiencing word finding problems. One participant reports how her
cognitive difficulties have impacted negatively on her relationship with her daughter, who is
frustrated with her due to her poor memory.
She is totally frustrated with me. Asking her to repeat things, and trying to write them down
all the time. I keep having to double-check with her . . . and with my husband. They are both
totally frustrated that I forget things.
(PB)
One participant reported how assisting his children with their homework has become increasing
difficulty because of his cognitive challenges.
I had to give up on helping with their homework, studying for tests, and other school
assignments. Not because I didn’t understand it, but I was having difficulties explaining
processes and concepts that I had taken for granted. (PF)
For this participant it became necessary to stop helping with homework and have his wife take on the
task instead.
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Six of the seven participants reported that cognitive difficulties were impacting their ability to
participate in meaningful hobbies and activities. Reading was the most common hobby mentioned
that was difficult for participants. There was a frustration because of forgotten plotlines or losing
concentration, which had not been an issue before.
One participant also stated that she was having difficulty with playing golf and bridge
because of her memory difficulties: remembering cards and golf scores. Another participant admitted
that he can no longer participate in board games with his family because of his cognitive difficulties:
“Since I absorb details much slower than before, it is very difficult for me to recall the rules and
manage the strategy and game pieces effectively” (PF). The participants spoke about how social
activities and interests are sometimes avoided because of embarrassing situations. Memory for other
people’s names was an issue that was raised by the participants. They spoke about becoming
embarrassed when this happened. There was also discussion around communication difficulties in
social situations.
Trying to communicate with others. I find that very difficult. I just get stuck for words. I just
find it very hard sometimes just to communicate. I have it in my head but then when I try to
put it into words nothing happens. (PG)
Adaptations and Adjustments to Continued Participation
As well as reporting on the difficulties that they experienced in daily life, the participants also
spoke about how they adapted their occupations to ensure continued participation. As the participants
in the study reported that they had not received any cognitive treatments to date, they instead
introduced different adjustments into their lives. Some of the participants adjusted their work
environments to deal with the difficulties with cognition. Another participant said he would receive
reminders from his secretary about meetings and deadlines. Another cut down her hours and also
used a notepad as a memory aid.
I would keep notes, keep a jotter or a notepad for writing things down. I would go back to it
then and tick things off that I had done trying to keep some sort of structure on it like that.
(PB)
Another participant began to organize and use her time and mental energy more while enrolled at a
university: “I have to pick and choose my lectures. Every second week I would have to miss one and
go to the other. I try to read up beforehand” (PG). A number of the participants reported no longer
helping their children with their homework. One participant, who still helps with homework,
explained how he adapted his family life so that he was still able to help his daughters.
Our children learned to ask me one question at a time and to be patient with receiving the
answer. I quite often had to break up the questions, to make them more manageable. It is
important to have no distractions, such as phones, television, e-mails, etc. I sometimes would
ask my wife to help the children when I was unable to help. (PF)
The participants spoke about strategies that they use to try and maintain their interest in reading.
One participant had difficulty remembering what books she had read. She reported that she would
give books away to remove them from the house after she has read them. This was the only way
that she could be sure that she had not previously read that book. Other participants adapted this
meaningful occupation by taking notes that would be reviewed whenever necessary: “I have to take
notes during the reading of the book or I will forget the plot. It’s just so that I can look back to
refresh my mind” (PD).
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Meeting people socially posed difficulties for the participants. Remembering names, details
of conversations, etc., were listed as difficult. One participant detailed strategies she uses to
remember conversations when meeting with friends.
If I meet somebody that I haven’t met for a while, when I come home I write down the
important things they have said so that when I go back and meet them the next time I will
remember. I have a special little book in my bag for that.” (PB)
Discussion
The participants in this study had similar, and also varying, experiences on how memory,
concentration, attention, and information processing difficulties impact their lives. The majority of
the participants were also not satisfied with the research carried out in the area of cognition in
MS.
Chiaravalloti and DeLuca (2008) also acknowledge that cognitive impairments have only been
recognized as an important symptom of MS over the past few decades and effective treatments have
not yet been identified (Chiaravalloti & DeLuca, 2008). One participant highlighted the importance
of early treatment in an attempt to prevent or slow the course of cognitive deterioration.
There was a level of frustration surrounding the discussions of treatment availability which was
reflected in the participants’ language (e.g., “neglected”). It is important to note that the reports in
relation to treatments obtained may be affected by recall bias. As we had no objective method of
ensuring that the participants were giving accurate information, this needs to be considered when
interpreting this. Having available routine cognitive tests as part of patient reviews would ensure
early detection and enable early treatment. Early baseline screening using the Symbol Digit
Modalities Test along with annual reviews has been recommended (Kalb et al., 2018). This would in
turn prevent further decline and lessen the effect cognitive impairments have on an individual’s life
(Patti, 2009). Participants in this study may not have been offered treatment, as they did not present
with any obvious cognitive impairment.
All of the participants spoke about how cognitive difficulties impacted their occupations.
Two participants lost their roles as employees due to cognitive difficulties. This finding is not unique
to the participants in this study as Kobelt et al. (2006), in a study of 13,286 participants with MS,
showed that employment rates for the participants were only 25% to 40%. This was markedly lower
than the European employment rate of that time, which was 64.3% (Kobelt et al., 2006). Honan et al.
(2015) found that cognitive change was a predictor of job loss and unemployment. Short-term
memory and delayed recall are two of five variables that explained variance in unemployment in a
sample of individuals with MS (Beatty et al., 1995). Raggi et al. (2015) also found that problems in
working memory contributed to difficulties carrying out vocational tasks. Occupational therapists
often work in the area of vocational rehabilitation, work hardening, and maintaining work roles for
their clients. Given the large number of people with MS who are of working age but not employed
(Honan et al., 2015), there needs to be more awareness of the specific needs or this population in
terms of work rehabilitation.
Parenting was also shown to be more of a challenge for this group of participants because of
difficulties with cognition. Helping with homework and disciplining their children were the main
issues reported. Pakenham et al. (2012) also reported that people with MS relied on their partners for
extra support: the parent with MS would have problems with tasks, such as remembering daily
schedules and assisting children with their homework. They found that support from the parent
without MS was needed to assist children with homework. This was also the case for the participants
in this study, some of whom had passed over the task completely to their spouses or partners.
Reading for leisure was identified as a hobby that was now difficult for some of the
participants. Retaining the plot was the main issue highlighted. This is supported by Shevil and
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Finlayson (2006), whose participants had difficulty reading because of concentration, attention, and
memory issues. The participants in this study said that they often avoided social situations to prevent
embarrassment that they attributed to poor memory and concentration. A study by Hoogs, Kaur,
Smerbeck, Weinstock-Guttman, and Benedict (2011) echoed this finding, as they found reduced
speed of mental processing may have a negative impact on an individual’s level of social interaction.
Occupational therapists have a key part to play in prioritizing, assessing, and addressing the
issues identified by people with MS. Occupational therapists are well-placed to help people with MS
maintain meaningful participation. This requires greater emphasis and awareness being placed on
cognitive symptoms for patients with MS and training provided to therapists on cognitive assessment
and intervention. Research has found that occupational therapists are a key part of goal-directed
multidisciplinary rehabilitation programs (Yu & Mathiowetz, 2014b) for people with MS.
Participating in meaningful, challenging activities in different environments, as suggested by
research, in the area of occupational adaption with other populations (Johansson & Björklund, 2016)
could be an effective option for people with MS and warrants further investigation.
Awareness of and intervention for cognitive difficulties that impact participation should be a
priority for healthcare practitioners. Medical professional’s awareness of cognitive difficulties as a
symptom of MS is improving and enhanced research tools and imaging are also generating optimism
in this area (Rahn, Slusher, & Kaplin, 2012). Occupational therapists are increasingly involved in
neuropsychological assessment and treatment and awareness of the needs of this population is
essential. In fact, a recent paper aiming to promote understanding of cognitive impairment in MS
recommended “increased professional and patient awareness around the prevalence, impact, and
appropriate management of cognitive symptoms” for people with MS (Kalb et al., 2018, p. 1665).
A number of limitations exist in this study. The MSNQ was used to determine the cognitive
status of the participants in the study. Previous research has found correlational analyses to indicate
the MSNQ is significantly correlated with mood and self-reports of functioning but not with
objective measures of daily functioning and only to a few neuropsychological tests (O’Brien et al.,
2007). This is a limitation given its use in screening participants for the study. We also did not assess
depression here, which may have had a potential impact on the MSNQ scores or confounded some of
the results, as there may be overlap in the symptoms (e.g., confusion and disorganization).
Recruitment of the participants was carried out through the Irish national association’s
website and Facebook page, which may have limited the audience. This meant that potential
participants who did not use the Internet and who may not be connected with the association were
not likely aware of the study. An unstandardized interview schedule was developed, as a suitable,
existing schedule was not available. Interviews were also carried out over the phone, which has
reported limitations, including a lower response rate, an absence of visual or nonverbal cues, and also
a necessity for short interviews, compared to face-to-face interviews (Novick, 2008). This format
may have also been more challenging for people with a cognitive impairment and may have been off-
putting to potential participants.
This study had a small sample and a low representation of male participants. This is common
for studies with individuals with MS since MS affects a greater percentage of females; however,
males may perceive difficulties in cognition differently than females and so further examination of
gender-specific issues would be important. Finally, all of the participants were diagnosed with
relapsing remitting MS. Different experiences may exist for people with other types of MS, and this
is worth exploring in future studies as it was not possible to address here.
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Conclusion
The main finding of this study is the frustration the participants with MS describe with the
health system and health providers who do not take cognitive complaints seriously. The results of
this study also show that for people with MS, the employee role can be lost, parenting can be
increasingly difficult, education can be a struggle, and hobbies and interests can be impacted
negatively.
Although we acknowledge that this is the experience of a small group of participants, we aim
to highlight the need to include cognitive assessments when working with people with MS to (a)
identify deficits and (b) provide evidence-based interventions. Making cognitive testing a routine
part of assessment would allow health care professionals working with people with MS to first
identify issues and then address the needs of this population. Future research in this area should aim
to develop meaningful interventions for people living with these challenges. Occupational therapists
are experts in daily life and the art of doing, and so they should be the driving force behind
implementing change and developing the research agenda for people with cognitive difficulty due to
MS.
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Appendix
Indicative Interview Guide
Note to facilitator:
Begin with introductions and information about the purpose of the interview.
Following this, give description of the study and its purpose.
Ask for any questions on the study or anything that needs to be clarified.
Ensure that the participant is still happy to participate.
Explain again what you mean by “cognition.”
Follow the questions listed below to elicit views of the participant. Some questions may require
more prompting; prompt as necessary.
Leave some time at the end for any further questions and to thank the participant.
Interview questions:
1. “I am going to start by gathering some information about you.” Ask the following questions:
a. What age are you today?
b. What type of MS do you have?
c. What is your employment status at present?
2. Have you noticed any cognitive changes/difficulties as a result of your MS?
3. How would you rate these difficulties? e.g., mild, moderate, severe.
4. Do these cognitive difficulties affect your ability to succeed in college/work/volunteering?
Please give some details. (Provide examples if required.)
a. How have you been managing this?
b. Has this been effective?
5. Do you feel that these cognitive difficulties affect your ability to childmind/parent effectively?
Give details.
a. How have you been managing this?
b. Has this been effective?
6. Do these cognitive impairments affect your ability to partake in hobbies/interests? Give details.
a. How have you been managing this?
b. Has this been effective?
7. Do these cognitive difficulties affect your ability to carry out household chores? Give details.
a. How have you been managing this?
b. Has this been effective?
8. What are the three things in your daily life that you find most difficult due to your difficulties
with cognition?
9. Have you any other strategies in place already to deal with these issues? Give details.
10. Do you use any aids or devices to help you with your cognition? (Examples would include a
diary, phone, noticeboard, Smartphone Apps.)
11. Do you ever experience cognitive fatigue or extreme mental tiredness?
a. If yes, please give some detail as to when this is most likely to happen and how you
usually deal with it, if at all.
12. Have you ever been to an occupational therapist as a result of these cognitive issues?
a. Give details of any interventions carried out.
13. Have you received or are you presently receiving any other treatment or intervention?(For
example, medication/psychology/mindfulness)
14. Any other comment?
12
The Open Journal of Occupational Therapy, Vol. 7, Iss. 3 [2019], Art. 4
https://scholarworks.wmich.edu/ojot/vol7/iss3/4
DOI: 10.15453/2168-6408.1579
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