Patient Education and Counseling 102 (2019) 1013–1020

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Patient Education and Counseling

journal homepage: www.elsevier.com/locate/pateducou

Multiple sclerosis self-management model: Personal and contextual

requirements for successful self-management
Setareh Ghaharia,b,* , Susan J. Forwellb , Melinda J. Sutob , Sara Morassaeia
a
School of Rehabilitation Therapy, Queen’s University, Kingston, Canada
b
Department of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, Canada

A R T I C L E I N F O A B S T R A C T

Article history: Objective: To explore self-management strategies used by people with multiple sclerosis (MS) with aim of
Received 20 April 2018 developing a MS self-management model.
Received in revised form 7 December 2018 Methods: A grounded theory approach guided development of a MS self-management model. Eighteen
Accepted 27 December 2018
individuals living with MS for three or more years and self-identifying as successfully managing their MS
were interviewed twice using semi-structured face-to-face or telephone interviews six months apart.
Keywords: Demographic and disease characteristics were descriptively analyzed. Field notes and interview data
Chronic disease
were qualitatively analyzed to identify concepts and categories.
Qualitative
Grounded theory
Results: The emerging model revealed six person-related categories describing self-management
strategies: adjusting outlook, managing stress, managing symptoms, healthy lifestyle, effective
communication, and setting priorities and planning. Three context-related categories that required
successful navigation for self-management were also identified: physical environment, personal social
network, and community services and resources.
Conclusions: The emerging self-management model that is grounded in the perspective of people with
MS includes person and context-related strategies that can be used concurrently to guide self-
management in the variety of challenges experienced by people with MS.
Practical Implications: A self-management model of MS is useful to service providers, health professionals,
advocacy organizations and people with MS to draw upon an organized and comprehensive approach to
self-management.
Crown Copyright © 2018 Published by Elsevier B.V. All rights reserved.

1. Introduction poorly developed self-management skills feel less control and

People with chronic conditions like multiple sclerosis (MS)
employ a wide range of strategies in managing their health [1].
Self-management can be defined as an individual’s ability to
manage their symptoms, treatment, physical and psychological
consequences, and life style changes required of and inherent to
living with a chronic condition [2]. Self-management programs
have been extensively explored in chronic conditions with more
than 50 systematic reviews showing their efficacy [3]. Individuals
with chronic conditions who understand their needs and circum-
stances can access information that can be complementary to
medical care [4,5]. Participants in self-management programs
experience a higher quality of life and may benefit more from
health professionals’ time [4–6]. Conversely, people with MS with
* Corresponding author. Present address: 31 George Street, School of Rehabilita-
tion Therapy, Queen’s University, Kingston, ON, Canada.
E-mail address: Setareh.ghahari@queensu.ca (S. Ghahari).
higher uncertainty over both illness and non-illness aspects of life
[7]. It is for these reasons that self-management is an important
part of healthcare for people with MS who experience physical,
cognitive and affective challenges [8].
Self-management has not been comprehensively embraced as
there is a scarcity of self-management programs for adults with MS
[8,9]. Despite the call for defining an empirical conceptual model of
MS self-management by the Consortium of MS Centers (CMSC)
[10], to our knowledge, there are no self-management models for
MS nor there are models for other neurological conditions. Generic
self-management models are focused on 'care' for patients [11]
rather than what skills people need to care for themselves. Our
recent Taxonomy of Every Day Self-management Strategies
(TEDSS) Framework explains how people think and interact with
their surrounding to self-manage aspects of their everyday life
[12]. A recent systematic review on the effectiveness of self-
management interventions in people with MS found positive
changes in psychological well-being and health-related quality of
life [13]. However, due to the range of methodological issues

https://doi.org/10.1016/j.pec.2018.12.028
0738-3991/Crown Copyright © 2018 Published by Elsevier B.V. All rights reserved.
1014 S. Ghahari et al. / Patient Education and Counseling 102 (2019) 1013–1020
among the studies, the authors concluded that further research on
effective self-management strategies for people with MS was
needed [13]. A scoping review on interventions that promoted self-
management skills to people with MS found that interventions on
fatigue management, coping, depression, stress management, and
medication management were most common [14]. A British study
that explored the daily experiences of people living with MS found
that participants had advice on self-management strategies, which
included keeping a healthy lifestyle, being realistic and staying
active [15]. A study on the correlates of successful self-manage-
ment among people with MS found that self-efficacy, perception of
treatment control, and a realistic MS timeline were salient
correlates of self-management [16]. In addition, a study reported
that people with low support and socioeconomic resources may be
at risk of poor self-management [17]. However, there remains
limited knowledge about effective self-management strategies
used by people with MS, as well as the characteristics of people
with MS who successfully self-manage their condition [8,9].
The CMSC Self-Management Consensus conference held in 2010
offered four recommendations for successful self-management for
people with MS. The first was to define an empirical conceptual
model of MS self-management [10]. Furthermore, it stated the
importance of a MS self-management framework to consider the
relationship between structural/environmental factors, psycho-
logical processes and behavior, and how these situations influence
self-management skills [14]. The current study aimed to undertake
the critical work of defining a model of successful self-manage-
ment for people with MS, and given the fluctuating and progressive
nature of the disease, exploring how and why self-management
strategies are used.
1.1. Purpose
The purpose of this study was to explore self-management
strategies used by people with MS who self-identify as successfully
managing MS, in order to develop a conceptual model. Illuminating
strategies of ‘successful MS self-managers’ to inform a conceptual
model helps anchor the validity of the model and improves the
likelihood that it will resonate with other people with MS. It will
also contribute to an understanding of best practices to support the
design of MS self-management interventions [10].
2. Methods
2.1. Design
A grounded theory approach was used as it offers systematic
guidelines for the development of concepts and theories to explain
human action in its natural context. The use of grounded theory arose
from the aforementioned CMSC call [15] to create a model of
empirical self-management strategies, to explicate the contextual
features that affect the use of those strategies, and to involve people
with MS in the process. Central to this knowledge objective is
learning what skills people with MS use to manage and care for
themselves. Thus, a grounded theory approach facilitated the
development of a model for strategies that people with MS use to
manage their complex and progressive condition and to complement
current models for chronic care. This approach employs an inductive
process that seeks to understand perspectives “from the ground up”
by moving from a specific behavior and to a general concept to
explain a phenomenon [18,19]. Grounded theory outlines a series of
coding steps to segment, sort and synthesize rich data followed by
constant comparison and refinement of emerging categories that
shapes a model [18,19]. This study was approved by the university
ethics review board and the hospital ethics review panel at the
setting from which people with MS were recruited.
2.2. Participants
People with confirmed diagnosis of MS were included if they
had lived with the condition for three years or more, self-identified
as successfully managing it at the time of study, and had sufficient
English skills to provide informed consent and complete an
interview. Having participants self-identify as successful in their
management of MS grounds our model in their own under-
standings and experiences. The study excluded those with other
serious health problems in order to focus on the self-management
related to MS specifically. In order to build a model of self-
management that is applicable to a wide range of people with MS,
maximum variation sampling was used (REF) [19] and participants
were not limited to a specific type of MS or level of disability
because it is known that, despite differences in needs, people with
different types of MS and levels of disability use a combination of
skills and strategies to manage their condition [20]. Empirical
literature suggests that sample sizes in grounded theory studies
typically range from 10 to 60 participants [21]. For this study, the
target was 25 participants or when ‘saturation plus three’ was met.
Saturation refers to the point when no new information is
emerging from interviews. Three further interviews were con-
ducted to test the saturation assumption.
Leaflets inviting individuals with MS to take part in interviews
were made available in the local MS clinic and distributed to clinic
health professionals. The individuals who met the inclusion
criteria received the consent form and questionnaires for the
study. Two days later, participants were contacted to address any
questions. An interview was then scheduled at a time convenient
to the participant. Transportation costs and a small honorarium
were provided.
2.3. Data collection
This study included two data collection points six months apart.
At data point one, five questionnaires were completed, a semi-
structured interview conducted, and field notes taken. At data
point two, the second interview and field notes were completed.
2.3.1. Interviews
Considering the fact that cognitive impairments are very
common in people with MS, the interview guide was sent to
participants prior to their interview to facilitate preparation and
reflection upon the questions. While we were aware of the
potential for rehearsed or polished answers, preparing beforehand
gave participants time to reflect on their experiences and provide a
thoughtful description. Consistent with a grounded theory
approach, the questions were revised as needed to give the
interviewer an opportunity to adapt the questions based on
previous answers.
A longitudinal grounded theory design was used (e.g. Mei-Chun
et al., 2012) to examine how self-management strategies changed
over time. Interviews, either in-person or by phone, began with a
general question about living with MS followed by questions
related to strategies, facilitators and barriers used to manage MS
and the appearance of new symptoms. These questions were
intended to refine our understanding of the participant experience
and perception of MS and to capture problem solving and health
navigation strategies. Early participant interviews informed minor
revisions to the probing questions to ensure understanding. Table 1
provides interview questions and examples of probing questions.
Questions explored changes over the last six months with a focus
on continuing, failing and newly adopted strategies. Conducting
second interviews is consistent with the key principle of
uncovering and explicating processes that are context sensitive
in order to fully comprehend the phenomena (Timonen et al.,
 S. Ghahari et al. / Patient Education and Counseling 102 (2019) 1013–1020
Table 1
Interview questions.
1. Let’s begin by talking about how having and living with MS had affected your life . . .
a How has MS affected your life, if at all? (areas to cover: job, hobbies, social life)
b Have things changed since your MS diagnosis?
c What has changed as a result of MS?
2. What strategies do you use to manage your MS?
a When you encounter a problem because of your MS, what strategies help?
b Are there other strategies that you have tried but have stopped using? Why?
3. What helps you to manage your MS?
a Why do you think you are able to manage your MS so well?
b What other things around you (family, social network, work and things in your environment) help you manage your condition? And how?
c What things do not help you manage MS? (personal characteristics and environment)
2018). Second interviews are not subject to discussion in the
grounded theory literature, suggesting they are an option.
The participants were given option of participating in-person
interview or telephone interview – whatever was more convenient
to them. This method was chosen because many people with MS
live with symptoms such as mobility impairment or fatigue that
restrict their participation in research. Although we were aware
that a face-to-face interview might give us better information
about the person’s emotional state at the time of interview, we
were confident that telephone and in-person interviews produce
qualitative data with similar richness (REF). All interview data
were audio-recorded and transcribed verbatim, then pseudonyms
were assigned to each transcript to ensure anonymity. Data were
entered into NVIVO software (v. 9, 2011). The first author (SG) who
is an experienced occupational therapist and was a postdoctoral
fellow at the time of data collection, conducted the interviews and
analyzed the data. She had no contact with the participants prior to
the data collection.
2.3.2. Field notes
Immediately following each interview, field notes were
recorded reflecting on the interview, unusual circumstances, and
any impressions or relevant observations.
2.3.3. Questionnaires
Five questionnaires were used to capture demographics, MS-
specific disease characteristics, current roles, MS-related disabil-
ity and impact, and self-management behavior. Participants
received questionnaires in advance of the first interview to
complete and either mail or bring to the interview session.
Questionnaires took an average of 35 min to complete. Prior to the
second interviews, participants completed the five questionnaires
again (only demographics that were subject to change were
included). After each interview, participants completed the MS
Self-management (MSSM) scale and mailed it to the research
team. This sequencing was chosen to avoid a potential source of
bias prior to interviews.
2.3.3.1. Demographics and MS-specific questionnaire. This
questionnaire included details such as age, sex, marital status,
and living situation. The MS-specific questions were related to
disease onset, course and current problems or symptoms.
2.3.3.2. Role checklist. The role checklist [22] is designed to elicit
information about a person’s roles. Part 1 identifies the major roles
in daily life and Part 2 assesses the degree to which each role is
valued. It has been used with community-dwelling individuals
living with disability and has shown to have high test-retest
reliability (Cronbach’s α > 0.90).
1015
2.3.3.3. Performance scales. The Performance Scales [23]
questionnaire is valid and reliable and assesses MS-related
disability on eight subscales corresponding to common MS
symptoms. Higher scores indicate greater impairment. Its
construct and criterion validity have been established [23] and
has high test-retest (intraclass correlation of 0.89).
2.3.3.4. Multiple sclerosis impact scale (MSIS-29). The MSIS-29 [24]
measures physical (20 items) and psychological (9 items) impact of
MS. Higher scores indicate higher disease impact. The MSIS-29 has
satisfactory test-retest reliability (r = 0.65-0.90) and high internal
consistency (Cronbach’s alpha 0.91) [25].
2.3.3.5. Multiple sclerosis self-management scale (MSSM). The
MSSM is a 24-item Likert-scale measure [26] that assesses self-
management knowledge and behavior. It includes five subscales:
treatment adherence/barriers, health provider communication,
social/family support, MS knowledge and information, and health
maintenance behavior. The MSSM has acceptable internal consistency
(α = 0.85) and satisfactory test-retest reliability and validity [27].
2.4. Data analysis
The questionnaire data were entered into SPSS for frequency
and descriptive analysis. Field notes were used to further explain
categories that emerged during the interviews. The analysis of
interviews was conducted using a three-step process as follows:
Step One: Preparing Data and Transcripts. The data were
transcribed accurately and transcripts were read several times
to grasp a deeper sense of the whole and obtain the overall
meaning [28].
Step Two: Developing Codes. Coding occurred in three levels.
Substantive coding involved examining the data line-by-line using
as many codes as possible to ensure a sense of whole. Focused
coding categorized the data using constant comparison, whereby
codes were compared with other data and assigned categories
according to obvious fit [29]. This iterative process required an
understanding of the data that underwent several refinements
(axial coding) to clarify each category and to reveal how categories
were related to subcategories. The codes were systematically
compared and contrasted, yielding increasingly complex and
inclusive categories [18,19]. The data were coded by the first author
(SG). The other authors reviewed codes at the axial coding level
and after finalizing the categories.
Step Three: Model development. Titles were given to categories
that emerged and, through working with the literature, these were
integrated to develop the current model [18,19].
During these three steps, the research team met to provide peer
examination of the analysis by re-reading the data independently
1016 S. Ghahari et al. / Patient Education and Counseling 102 (2019) 1013–1020

to identify patterns. This was done as a means of enhancing Table 3

MS-related disease characteristics, health status, and self-management knowledge
theoretical sensitivity and reducing selective inattention [29]. The
and behavior of study participants (n = 18).
model was then critiqued by five participants at the end of the
second interview to incorporate their feedback in further model Characteristics Scores, n (%)
refinement. Performance Scale, n (%)
Mobility
Normal to mild disability 9 (50.0)
3. Results
Uses a cane 5 (27.8)
Total gait disability 4 (22.2)
3.1. Participant characteristics Cognitive symptoms
Normal to minimal disability 13 (72.2)
Twenty-four individuals with MS expressed interest in this Mild to moderate disability 5 (27.8)
Hand Function
study. Two were not interested after receiving study information
Normal to minimal disability 9 (50.0)
and four did not meet the inclusion criteria, i.e., three had other Mild to moderate disability 9 (50.0)
chronic conditions, and one became ineligible during the study due Vision
to difficulty managing her MS. Thus 18 people with MS Normal to minimal disability 14 (77.8)
Mild to moderate disability 2 (11.1)
participated. Saturation was reached during the iterative process
Severe disability 2 (11.1)
of data collection and analysis from the first 15 participants. To Fatigue
assess the saturation assumption, three additional participants Normal to minimal disability 5 (27.8)
were recruited (N = 18), which resulted in no new information. Mild to moderate disability 9 (50.0)
Table 2 provides a summary of the cohort. Participants had a mean Severe to total disability 4 (22.2)
Bowel/ Bladder
age of 49.8 years (SD = 12.4, range 24–70), 56% were female, and the
Normal to minimal disability 8 (44.4)
mean MS duration was 15.9 years (SD = 9.0, range 5–38). Mild to moderate disability 9 (50.0)
Table 3 shows performance characteristics and symptom Severe disability 1 (5.6)
experience for this cohort. Quality of life as measured by the Sensory symptoms
MSIS showed a mean score of 42.1 (SD = 12.8) for physical status Normal to minimal disability 11 (61.1)
Mild to moderate disability 5 (27.8)
and 18.6 (SD = 5.9) for psychological status, indicating that disease Severe disability 2 (11.1)
impact related to physical limitations and cognitive or emotional Spasticity symptoms
symptoms was fairly low, and consistent with successful MS Normal to minimal disability 12 (66.7)
management. The MSSM subscale with the lowest mean score was Mild to moderate disability 5 (27.8)
Severe disability 1 (5.6)
related to Communication and Relationship with Healthcare
Pain
Providers at 12.6 (SD = 4.6) indicating lower comfort and willing- Normal to minimal disability 10 (55.6)
ness among participants to discuss issues with healthcare Mild to moderate disability 6 (33.3)
providers. Severe disability 2 (11.1)
MS Impact Scalea , mean  SD (range)
Physical status (scale range: 20-100) 42.1  12.8 (21-74)
Psychological status (scale range: 20-100) 18.6  5.9 (10-28)
MS Self-management Scaleb, mean  SD (range)
Table 2
Healthcare Provider Communication (scale range: 6-30) 12.6  4.6 (7-25)
Socio-demographic and MS diagnosis-related characteristics of study partici-
Treatment Adherence/Barriers (scale range: 7-35) 23.9  1.3 (22-26)
pants (n = 18).
Social/Family Support (scale range: 3-15) 13.8  2.0 (8-15)
Characteristics Scores, n (%) MS Knowledge & Information (scale range: 4-20) 18.1  2.1 (14-20)
Health Maintenance Behavior (scale range: 4-20) 16.8  3.2 (11-20)
Age (years), mean  SD (range) 49.8  12.4 (24-
70) a
Higher score indicates more negative impact of the MS on the person’s life.
Sex, n (%) b
Higher score indicates higher self-management skill of the person in managing
Females 10 (56) life with MS.
Males 8 (44)
Marital Status, n (%)
Single 2 (11)
Of the 18 participants, nine chose face-to-face and nine chose
Married or living with common-law 12 (67)
Divorced or separated 4 (22)
telephone interviews. The mean interview time was 51.1 (SD =
Education, n (%) 7 (39) 25.0) minutes.
Some trade school or university, or less 11 (61)
Completed trade school or university 3.2. Self-management model in MS
Living situation, n (%)
Alone 2 (12)
With spouse 11 (61) A model for self-management of MS was developed primarily
With spouse and children 5 (29) from analyzed qualitative data. Participants helped define the
Home support, n (%) management of MS, the core concept of the model, as “being able to
Receives home support 3 (17) do all that I like to do, considering what I can do”. Located at the
Receives no home support 15 (83)
Income level/year, n (%)
centre of this model (see Fig. 1), the person with MS employs a
 $29,999 6 (33) range of self-management strategies (person-related categories):
 $30,000 and  $69,999 4 (22) adjusting outlook, managing stress, managing symptoms, living a
 $70,000 8 (44) healthy lifestyle, communicating effectively, and setting priorities
Type of MS
and planning. These are embedded in three contextual factors:
Relapsing remitting 9 (50)
Primary progressive 3 (17) physical environment, personal social network, and community
Secondary progressive 3 (17) services and resources.
Unknown 3 (17)
Time since MS diagnosis (years), mean  SD (range) 15.6  9.0 (5-38) 3.2.1. Person-related categories
Time since start of MS symptoms (years), mean  SD 19.8  11.7 (7-42)
(range)
This study illuminated the agency of people with MS by
elaborating the wide range of self-management strategies they
 S. Ghahari et al. / Patient Education and Counseling 102 (2019) 1013–1020
Fig. 1. A model of MS self-management including six person-related and three context-related categories.
employ, as described by the six person-related categories that
emerged. The strategies that comprise successful self-manage-
ment are ongoing and not chronological or linear. Table 4 provides
examples of data that give rise to these categories.
3.2.1.1. Adjusting outlook. This category focuses on the importance
of maintaining a positive perspective as a way to empower day-to-
day management of life with MS. Participants felt that dwelling on
negative thoughts and on the changes they experienced in their
decreasing abilities hindered self-management. Participants
identified maintaining a positive attitude as a critical
contribution to self-management.
3.2.1.2. Managing stress. Key to handling life with MS was the
ability to reduce stress. Participants reported helpful strategies
such as “listening to music” (Stephen), relaxing, or “crunching on
chips” (Jack) to avoid or remove stressors. Participants tended to
experience new changes as very stressful but as they became
integrated over time, to the new normal, the stress was alleviated.
For example, leaving work, finding less physically demanding
work, moving to working part-time, or working from home were
changes that required adjustment but also were effective ways to
manage stress and MS symptoms. Although leaving work was
difficult for some, keeping busy with meaningful activities, such as
spending time with grandchildren or volunteering was restoring.
3.2.1.3. Managing symptoms. The most commonly reported
symptoms were fatigue, cognitive problems, and mobility issues.
Participants used various strategies to manage these and other MS
symptoms including medication management and alternative
therapy (e.g., acupuncture) (Janet). Strategies to manage cognitive
problems included using a checklist, avoiding multi-tasking, and
ending work when tired. Strategies to manage fatigue included
planning, adjusting activities and controlling body temperature.
Managing mobility issues included accepting a mobility device,
using the stronger side of the body, and being willing to explore
solutions (e.g. teleconferencing versus attending meetings, using a
scooter).
1017
3.2.1.4. Healthy lifestyle. To successfully manage MS, participants
reported that practising a healthy lifestyle (defined as eating well,
having quality sleep, not smoking or drinking, and participating in
active pursuits) was essential. Some suggested taking better care of
themselves after receiving their MS diagnosis than they did
previously, and the importance of putting their health first. A
healthy lifestyle was a feature that participants could exert more
control over, suggesting that it is a very important component for
managing MS.
3.2.1.5. Communicate effectively. One participant, Jack, defined
effective communication as the “ability to say where and what you
need . . . and be willing to accept help.” For many participants this
was difficult. Janet reported the need to convince herself to ask for
help, while Stephen found it useful to reflect on the consequences
of being left without the needed assistance. Stephen and Jack, who
use wheelchairs, considered it important to explain to those who
are well-meaning that they would ask, if help was needed.
Interestingly, they also mentioned that encouraging helpers was
essential in receiving services.
3.2.1.6. Setting priorities and planning. This strategy involved a
range of activities that included making arrangements in advance
based on abilities and needs, modifying the plan as needed, and
listening to their body (i.e., continue, modify or cancel the plan). An
aspect of planning that Shawna articulated included protecting
time to do the necessary cognitive work of determining the plan,
preparing the plan, and maintaining awareness of required
changes. These strategies were significant to complete desired
tasks and get through the day.
These person-related categories are not in isolation but rather
are closely interconnected, such that one category may influence
one or more other categories, and similarly, ignoring an issue in
one category could impact other categories. For example, Sheila
reported the impact of this cascading effect. Her daughter giving
birth and a loss in the family required her to travel to help out. The
resulting excessive demands and stress went unmanaged (impact-
ing her stress management). This increased her fatigue due to
1018 S. Ghahari et al. / Patient Education and Counseling 102 (2019) 1013–1020

Table 4
The person-related categories of a self-management model of MS (n = 18).

Categories Relevant participant quotes (pseudonyms)

Adjusting outlook “I think the fact that I’m quite positive and I’m trying my best to accept this thing [MS] is helping” (Janet)
“I know I have the disease, I know I have to do things differently than I may like to do in my life, but I've accepted that and I think that that's the
key.” (Jane)
“The ones I have met who aren’t managing well . . . are people who haven’t managed their depression level and are really depressed about
having MS and about having their abilities changed, and so are not looking on what they can do, they are focusing on what they can’t do.” (Sheila)
Managing Stress “It's going to be five years in July [that I left my job]. You think I would have adjusted by now but it still really bothers me. But the first two years
what I did . . . I said to my daughter, ‘I'll pick them [my grandchildren] up from school every day . . . and I'll bring them to you. It doesn't matter
if it's snowing or raining. I have to have a purpose in life.' And it was great.” (Saba)
“I had young children and I was renovating my house and there was lots of stress. So after having a very bad relapse a year after I was diagnosed
and hospitalized for three weeks, I decided to make some big changes to my life. Basically [I] decided what the priorities were: getting my health
and looking after my kids. So I stopped working and tried to de-stress my life as much as I could and have managed to re-build. I found though
was still missing working, so that's when I started volunteering for the MS society”. (Amy)
Managing Symptoms “I find that I have to adapt my day, so for example, if I need to do something in the evening I'll make sure that I'm napping in the afternoon. Every
day I say I have a hundred pennies of energy and how am I going to spend those pennies of energy. Maybe pick up my daughter or do a
teleconference in the morning – whatever it is, I'm always adjusting my ‘what I can do’ in the day. I choose what activities I do”. (Amy)
“Depression, that’s part of the MS package. I was fighting it for a long time, until a good friend got cross with me. Because I’m a psychologist, she
said ‘You psychologists think you can do it all yourself’ and ‘Don’t you realize there’s nothing wrong with taking something. If you were a
diabetic you wouldn’t say no’. Those arguments made a difference because the difficulty in making decisions when you’re depressed is a huge
barrier to getting on with life”. (Jane)
“I did some acupuncture and I’m going to start again, and it’s mainly for the depression. [The acupuncturist] didn’t know anything about MS and
said to me ‘The only thing I can do is for depression.’ Because I was really depressed when this happened [lost my job], and I was really scared. So
it helped me a lot this thing [acupuncture]’. (Janet)
“I’ve had to resort to actually posting a note by the doorknob on the way out of my apartment. I call it my checklist because when I go out now I
have a long bus commute; I have to take three buses to get to work. I always have to have my bus pass, my keys, and I’ve got maybe half a dozen
things at least that I need to make sure I have: my phone, my umbrella, my mug to get my coffee - those types of things. And you’d think that
you’d know these things every single day but it’s amazing, because I might be just slightly off enough that I’ll forget something major and it
would really hinder my day”. (Heidi)
Healthy Lifestyle “I look after myself a lot more than I did before this happened. Health wise I’m way more strict than I used to be . . . more exercise, more
sleeping, not staying up as late as I used to, just a whole lifestyle thing”. (Jack)
“I eat a lot healthier so I find – than I have in the past so I find that my energy level is actually a lot more consistent and just generally speaking an
improved lifestyle”. (Andrew)
Effective “I've never been that good at asking for help. It's just my personality. It's rare that I would ask for help for anything. I finally said to my husband,
Communication 'For the last 5 years I've been able to keep up with the housework. But would you mind taking care of the floors and the toilets. I can take care of
the bathtub.’ So now he takes care of the bathroom and the floors. It was really hard for me to ask for that help”. (Saba)
“I think about consequences of not getting help: I might not be able to do what I want to do or I might hurt myself’. (Jack)
Setting Priorities & “I used to do the whole house work and everything on one day. Now it just about takes me all week to do it. But I am taking care of myself.
Planning Sometimes I wish I had help, but I can, and do it by myself. I’d like to be able to take care of me”. (Mary)
“I need afternoons that are on my own. If I can’t have the afternoon . . . then I have to re-organize mornings or evenings to make sure that I’m
not doing too much”. (Jane)
“If there’s anything that slows me down from getting to the bathroom, I’m going to get wet. Guaranteed. So if I leave the house I’m wearing
absorbent pants, always. In fact most of the time around the house, I’m wearing some kind of a pad . . . then I’m protected, I don’t have to worry
about making a mess”. (Stephen)

inadequate rest during the day (reducing symptom management).
Finally, these situations took time and attention away from
exercising and other healthy lifestyle behaviours. This example not
only highlights the interconnection of person-related strategies
but also illustrates the influence of contextual considerations for
managing MS.
3.2.2. Context-related categories
People with MS manage and react to the different contexts in
which they live and the people, systems, environments and
information within those contexts. The three context-related
categories that MS participants identified were: the physical
environment, their personal social network, and community
services and resources. Participants described navigating these
contexts as critical, which cannot be ignored or underestimated
when considering self-management in MS. (See Table 5)
3.2.2.1. Physical environment. Participants described the physical
environment along dimensions of indoor/outdoor and public/
private spaces, challenges and inclusivity. For instance, the
accessibility of public space, access to facilities suited for people
with disabilities, and appropriate housing were conducive to
managing life with MS. One participant, Peter, suggested that
having one’s personal space organized efficiently was paramount
for symptom management.
3.2.2.2. Personal social network. Several participants remarked on
the support from various people in their social network. In
particular, family members and partners who are encouraging,
supportive, and advocates contribute to successful self-
management. They help by understanding the needs and by
supporting and enacting problem-solving solutions. Friends who
give “peace of mind” (Lucie), who are “good fun” (Randy), or who
are reliable on hard days are assets to successful self-management.
Another strategy is sharing ideas and experiences with others who
have MS to ask and answer questions and problem solve together.
Work colleagues who are flexible and cognizant of MS are
supportive and help the person get through difficult days to
avoid jeopardizing their job.
3.2.2.3. Community services and resources. Several participants
stated that they felt supported by the MS Society that provides
education, medication information, support groups and access to
equipment. Healthcare professionals were also a source of
support, especially for medication management. However, they
were not particularly helpful for managing day-to-day life with
MS, such as fatigue, incontinence, and mobility issues, which
were mostly managed by trial and error. Other organizations that
offer support and opportunities (e.g. sit ski) were mentioned by
Jack and Andrew who used a wheelchair as their primary means
of mobility.
 S. Ghahari et al. / Patient Education and Counseling 102 (2019) 1013–1020 1019

Table 5
The context-related categories of a self-management model of MS (n = 18).

Environment/context Relevant participant quotes

Physical Environment
Personal Social Network
Community Services and
Resources
“I've had times where my legs are really bad, and I've parked in the accessible spot because there's just no other spots around or I know
those extra steps when I come out with my groceries are going to be important.” (Amy)
“I won’t go to things if I think it’s going to be too hard to find a toilet. I won’t do things if I can’t look after my condition myself. I don’t mind
taking risks but I do mind risking my self-esteem by not managing well. I would say that more signposting for good public toilets would be
very useful. But there is a program . . . that you could have on your phone, like Google [showing the] closest open public toilet and it was
related to the . . . MS Society”. (Jane)
“My girlfriend is probably the biggest asset that I have when it comes to managing my MS. She’s just been very good at getting me
organized . . . and then from there I’ve been able to figure out my own systems and manage my life. When we go to doctor’s
appointments . . . she writes all the notes in the book, and if I have to go by myself then I take the book. So she [girlfriend] is keeping me
organized”. (Andrew)
“I have such good friends who understood what I was going through and who supported me. And that, that’s the main thing that I always
tell people, you have to get people behind you”. (Catherine)
“I took up skiing earlier this year. So actually have been able to ski once with my son. But huge, huge amount of effort to make that happen. I
mean, I had to get involved with the disabled skiers association and get a membership to that and get a bunch of training and have
volunteers help out, and it’s quite a production”. (Stephen)
“But MS is not a premier discussion topic [in MS support group]. It’s basically just like a friend: what have you been doing the last week, you
know? But without them [members of the support group] I would feel like a, like a dam out of the water, if I don’t talk for a long time, oh
boy, it’s horrible. I need to let things out, I need to let off steam sometimes”. (Catherine)

There were several examples reported demonstrating the
interconnection between the context and person-related catego-
ries. For example, while on vacation in Hawaii, Jack described how
his effective communication and personal network facilitated
solutions for improved access to the physical environment. His
conversation with the hotel manager resulted in next-day
construction of a ramp that improved hotel accessibility for Jack.
4. Discussion and conclusion
4.1. Discussion
The aim of this study was to examine the strategies used by
people with MS in order to develop a model of successful self-
management. The results revealed that managing MS successfully
meant to participate in life while taking care of oneself, listening to
one’s body, and making allowances for the limitations. Since the
recruited participants had a variety of types of MS and levels of
disability, the strategies that emerged can be considered generally
relevant to people with MS, regardless of stage or type. Further
study could examine more closely how these strategies are
affected by the type or stage of MS.
The study findings are unique as successful self-management
strategies were found to be influenced by personal networks, the
broader social network, and the physical environment, whereas
physical obstacles and a desire for more information were found to
be barriers. These findings are supported by previous research that
suggested that people with MS are dissatisfied with the level of
information provided by health professionals as it focuses on
medication and symptom management [15,30]. In fact, a recent
systematic review revealed that the primary challenges of living
with a chronic condition were not disease specific, but rather
related to the physical and emotional symptoms as well as the
confusing, contradictory information given by healthcare pro-
viders [31]. While medical guidelines state the importance of self-
management in people with MS [32], there remains little evidence
and lack of understanding around providing self-management
strategies by healthcare professionals [31,33].
The six person-related categories of successful self-manage-
ment depict strategies that are used concurrently and are ongoing.
This finding is supported by research that has found that self-
management is not linear, rather it is dynamic and overlapping
[2,34]. Furthermore, in our study, participants used multiple
strategies to cope with a range of problems within different
contexts. A previous study similarly found that the set of self-
management skills developed by participants was useful when
applied to a variety of activities across different settings [35]. Our
study suggests that there is no single strategy, but numerous
strategies that facilitate successful management. There was also
evidence of improvement in participants’ use of self-management
strategies over time as they learned to live with MS. Past research
has found that with an increase in experience and disease
knowledge, self-management behaviours develop [35,36]. Partic-
ipants also improve the “identification of precipitating factors,
development of self-monitoring skills and vigilance” [35].
This study provides a self-management model based on a rich
account of difficulties that people with MS experience and the
successful strategies used in response. This study has some
limitations that need to be considered. The sample was recruited
from one MS clinic in Canada, and excluded those with other
serious conditions, and therefore may not represent the general
population of MS. More studies are required to unpack the
strategies that people with several comorbidities use. Also, the
inclusion criteria were based upon individuals self-identifying as
successfully managing their MS, which may have skewed results
towards people who felt motivated to share strategies and may not
necessarily be an accurate reflection of all self-management.
However, working with the participants’ own definitions of
success helps ground our model in their lived experience of
navigating MS instead of imposing an external definition. Finally,
while the model provides an overview of the important self-
management areas, it does not claim to be a causal pathway and
should not be used in this manner.
Future studies could move in three directions based on the
findings of this work. The first is developing and evaluating a MS
self-management program that incorporates strategies revealed by
this study. The second is to explore further the contextual factors
that influence self-management and identify ways of better
supporting people through the challenges of MS. A third direction
is the potential extension of this model to inform self-management
for other chronic conditions.
4.2. Conclusion
The present study explored the strategies used by people with
MS who self-identified as successfully managing their daily life
with the aim of developing a self-management model for MS. The
emerging model illustrates the modes of agency that people with
MS employ to steer their life to be able to do what they want to do.
Strategies identified in the model were shown to be used in
1020 S. Ghahari et al. / Patient Education and Counseling 102 (2019) 1013–1020
different combinations for managing a variety of challenges. The
identification of person and context-related strategies are ground-
ed in the perspectives of people with MS and are well-positioned to
form the basis of education and intervention programs in MS self-
management.
4.3. Practice implications
A self-management model of MS can be useful to service
providers, healthcare professionals, advocacy organizations, peo-
ple with MS (including support groups) and their caregivers who
see the benefits of self-management in an organized and
comprehensive way. This work provides a framework that can
be useful alongside other interventions related to medications and
symptom management. A self-management program for MS
would be ultimately aimed at a decreased healthcare utilization
and increased quality of life for people with MS.
Funding
This work was supported by National Multiple Sclerosis Society,
Mentor-based Rehabilitation Fellowship (Award No. MB 0016).
Informed consent
We confirm all personal identifiers have been removed or
disguised so the people described are not identifiable and cannot
be identified through the details of the story.
Conflict of interest
None.
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