How do people with multiple sclerosis who have walking difficulties perceive participation? A qualitative analysis

Abstract

Objective

Participation plays a pivotal role in rehabilitation for people with multiple sclerosis. In clinical practice, the International Classification of Functioning, Disability and Health serves as a basis for characterizing participation. However, this framework lacks the subjective perception of participation. This study examines the perceived participation of people with multiple sclerosis and gait impairment through a sense of connection, efficacy, and meaning.

Design

Qualitative research design with focus group and individual interviews.

Setting

Participants were interviewed using an online conference tool.

Participants

Transcripts from four online focus group interviews with people with multiple sclerosis and gait impairment (4–6 participants each, totaling N = 19, aged 33 to 76, with 12 females) and from 12 individual interviews with participants from these focus groups were analyzed.

Intervention

None.

Main measures

Two researchers coded transcripts using qualitative content analysis by Kuckartz.

Results

A sense of connection was about common activities, a sense of inclusion, sameness, familiarity, and contributing to a social system. Experiences of exclusion, otherness, and foreignness were reported. A sense of efficacy ranged from a sense of competence, influence, and independence to a sense of dependence, a lack of spontaneity, and helplessness, leading to refraining from activities. Meaningful activities, sensual experience, a sense of purpose, identity, and equality were related to a sense of meaning.

Conclusions

Perceived participation goes beyond the ability of being involved in life situations. Clinicians following a patient-centered approach can incorporate the presented perspective of people with multiple sclerosis and gait impairment on participation into their clinical action.

Keywords

Multiple sclerosis participation (WHO ICF)mobility qualitative study

Introduction

Multiple sclerosis is a degenerative disease of the central nervous system¹ with increasing prevalence.² Symptoms impact various physical and mental functions.³ People with multiple sclerosis and gait impairment are especially vulnerable to participation restrictions.⁴ Studies show that mobility impairment negatively impacts the quality of life and activities of daily living of people with multiple sclerosis.^5,6 Maintaining and improving participation is thus a central element of rehabilitation processes.⁷ Yu and Mathiowetz⁸ argue that individualized and participation-oriented interventions are particularly valuable for people with multiple sclerosis. In their paper on reviews focusing on rehabilitation interventions and participation among people with multiple sclerosis, Momsen et al.⁹ conclude that, due to the progressive nature of multiple sclerosis, it is essential to incorporate the person's perspective into rehabilitation processes, and future research should focus on related experiences of people with multiple sclerosis.

Following the International Classification of Functioning, Disability and Health (ICF), participation is defined as “involvement in a life situation,”¹⁰^(p.14). A subjective side to that involvement¹⁰ is being acknowledged but not included. Studies bring forth the idea of expanding the ICF by this emotion- and perception-based dimension of participation.^11–14 The social identity approach to health and well-being¹⁵ can serve as such a complementary approach.¹⁶ Following this approach, social identities originating from social group memberships can positively impact health through (1) a sense of connection, (2) a sense of meaning, (3) a sense of efficacy, and (4) social support.^15,17 While the ICF offers a framework for determining how a person is involved in a life situation, the social identity approach to health and well-being can help answer how respective involvement is perceived.¹⁶ Against this background, the following research question will be investigated: How do people with multiple sclerosis and gait impairment subjectively perceive participation in terms of a sense of connection, efficacy and meaning?

Methods

A qualitative research design encompassing semi-structured online focus group interviews and individual interviews with people with multiple sclerosis and gait impairment was chosen. Focus group and individual interviews can complement each other by not only allowing for the emergence of collective insights but also creating a protected space in the individual interview, where subjective experiences and feelings can be addressed that might not be raised in the group setting.¹⁸ The focus group interviews took place as part of the project Multiple Sclerosis—Patient-oriented care in Lower Saxony (grant number: 01VSF19046).¹⁹ Ethical approval was obtained from the corresponding Research Ethics Committee (Research Ethics Committee of the Hannover Medical School, reference number 9173_BO_K_2020; Faculty of Health Sciences, University of Oldenburg, Germany, reference number 2020-108 and 2021-077). This study was registered with the German Clinical Trials Register (Number: DRKS00025532).

Recruitment and data collection

The purposive sampling strategy consisted of: (1) recruitment for focus group interviews, followed by (2) recruitment for individual interviews among the participants of the focus group interviews. The German Multiple Sclerosis Society Lower Saxony sent out invitations for the focus group interviews to 433 members living with multiple sclerosis. Participant selection was based on pre-defined inclusion criteria encompassing (a) 18 years of age or older, (b) sufficient knowledge of the German language, (c) diagnosed with multiple sclerosis, and (d) owning or being in the immediate process of receiving a walker, manual wheelchair, or electric wheelchair/scooter. If the number of requests outnumbered the size of the focus group, participants were selected based on a balanced composition of demographic and clinical characteristics in the focus groups. Out of 29 people interested, nine people did not fulfil the selection criterion d (n = 6) or the intended group composition (n = 3). One participant could not participate due to technical problems. In sum, 19 people with multiple sclerosis and gait impairment took part in an online focus group interview. Of these 19 participants, 13 were also interviewed individually. Informed consent was obtained for both the focus group interviews and the additional individual online interviews.

Focus group interview questions revolved around the experience of participation. The individual interview guide focused on the participant's most important participation area and associated senses of connection, efficacy, and meaning¹⁵ (Supplemental material A: Interview guides). The interview guide for the focus group interviews was pilot tested with people with multiple sclerosis. The individual interview guide was tested with the first participant and proved suitable. The focus group interviews and individual interviews took place between May and August 2021 using an online conference tool. Pre-meetings with the participants to test the online conference tool and explain the purpose of the study were held. A subsection of each focus group interview lasting between 20 and 32 min was analyzed for the present research question. Individual interviews lasted between 18 and 56 min.

Data analysis

The focus group interviews and individual interviews were transcribed verbatim. Two researchers (EMD and NR) analyzed the data using qualitative content analysis as described by Kuckartz,²⁰ allowing for structuring the data material stepwise both deductively and inductively. The steps that were carried out are outlined in more detail in the following paragraphs. The data analysis software MAXQDA 2022²¹ was used.

Interviews were split into two sets. The first set was coded independently by EMD and NR with the main categories: sense of connection, sense of efficacy, or sense of meaning¹⁵ (Table 1) (step 1: deductive coding). A text passage was coded with one of the three main categories if the sense was experienced in the context of one of the nine activities and participation domains listed in the ICF¹⁰: (1) Learning and applying knowledge, (2) General tasks and demands, (3) Communication, (4) Mobility, (5) Self-care, (6) Domestic life, (7) Interpersonal interactions and relationships, (8) Major life areas, (9) Community, social and civic life. The coding was compared after each transcript and discussed until a consensus was established. The second set of interviews was then coded with the main categories by EMD. NR checked the coding, and disagreement was discussed until a consensus was found.

Table 1.

Main categories deductively developed based on the social identity approach to health and well-being¹⁵ and subcategories inductively developed during fine-coding.

Main category	Definition of main category	Subcategory
Sense of connection	The sense of connection is defined as subjective feeling of psychological closeness to other people and the feeling of being an integral part of a social system in the context of a participation domain.	Common activities
		Sense of inclusion
		Sense of sameness
		Sense of familiarity
		Contributing to a social system
		Sense of exclusion
		Sense of otherness
		Sense of foreignness
Sense of efficacy	The sense of efficacy is defined as a subjective feeling of control or power by oneself in the context of a participation domain.	Sense of competence
		Sense of influence
		Sense of independence
		Sense of dependence
		Lack of spontaneity
		Sense of helplessness
		Refraining from activities
Sense of meaning	The sense of meaning encompasses a subjective feeling of significance and value in the context of a participation domain.	Meaningful activities
		Sensual experience
		Sense of purpose
		Sense of identity
		Sense of equality

Inductive fine coding (step 2) was then carried out to grasp variations of the three senses. First, possible subcategories were developed by EMD and NR. EMD, NR, and ALB discussed the resulting subcategories until a consensus was found. Then, EMD and NR fine-coded interviews independently, resulting in a Kappa = 0.62.²² Because the intercoder reliability was identified as good,²⁰ EMD fine-coded the remaining interviews, and NR checked the coding of each interview.

Two PhD students with a background in psychology (EMD, female) and health sciences (DH, male) moderated the focus group interviews. The individual interviews were conducted by EMD. The transcripts of both the focus group interviews and individual interviews were analyzed by EMD and NR (female, a studied occupational therapist). All researchers were trained in conducting qualitative research. The consolidated criteria for reporting qualitative research (COREQ) checklist²³ served as an orientation for this study.

Results

The final sample encompassed 19 participants who reported being diagnosed with MS diagnosis for between 2 and 33 years. They relied on various mobility assistive devices, such as walkers or wheelchairs. All of them took part in one of the four focus group interviews (4–6 participants each). Thirteen of these 19 participants were also interviewed individually. One individual interview had to be excluded from data analysis due to poor audio quality. The final data set consisted of four transcribed focus group interviews and 12 transcribed individual interviews. Participant characteristics are shown in Table 2.

Table 2.

Sociodemographic and clinical characteristics of participants (n = 19)^a.

Characteristics, n (%)	Focus group interviews	Individual interviews
Age, years, M (Range)	53.6 (33–76)	54.8 (36–76)
Gender, Females, n	12	6
Years since MS diagnosis, M (Range)	16.1 (2-33)	17.7 (8–33)
Disability, EDSS Score^b, M (Range)	6.5 (4–8)	6.75 (4–8)
Employment status, n
Part/Full-time employment	6	5
Retirement pension	4	3
Disability pension	7	4
Other/not assignable	2	-
Highest general school certificate, n
(Lower) Secondary School diploma	9	4
University-entrance diploma/	9	8
Vocational diploma
Not assignable	1	-

Detailed sample characteristics have been published in Dilger et al.¹⁶

EDSS: Expanded Disability Status Scale. The EDSS measures disability on a scale from 0 (normal) to 10 (death due to MS).³³

The data were analyzed through the lens of the three senses (Table 1, column 1). Subcategories were developed inductively (Table 1, column 3). In sum, 354 text passages were coded (sense of efficacy = 168 codes; sense of connection = 115 codes; sense of meaning = 71 codes).

Sense of efficacy

A sense of efficacy, defined as a subjective feeling of control or power by oneself,¹⁵ in the context of a participation domain, proved to be a major topic in various participation domains.

The interviewees experienced efficacy through a sense of competence, characterized as a feeling of being able to cope well with demands. It draws on the experience of efficiently handling challenges and activities in a participation domain as illustrated by one participant: “(…) at work it [work tasks] simply – it just runs smoothly” (#12, Personal Interview). Mobility and work were mainly addressed by the interviewees when talking about a sense of competence. Experiencing a sense of influence, characterized by the feeling of being able to influence states and decisions, was a distinguishable experience of a sense of efficacy. Both senses occurred individually or collectively, for example, as part of a work team.

A sense of independence from external circumstances or objects in one's own life and action emerged as a distinct part of a sense of efficacy. To have a choice and to act autonomously in the respective participation domain were key experiences associated with this valued sense of independence. However, sometimes, taking part in a participation domain was also accompanied by a sense of dependence on external circumstances or objects, which was, in contrast, perceived as burdensome. In discussing their personal participation experience, the focus group members elaborated on their feelings of dependence and their wish for a higher sense of independence:

#8: But, of course, I would rather not [laughs] need a walker.

Interviewer #1: #15, did you want to say anything about it?

#15: Yes, I also see it that way, that without it [mobility assistive device], you are not really capable anymore, but you want everything to be like it used to be. (Focus Group #2)

In this area of tension between a sense of dependence and independence, the theme sense of spontaneity emerged as a facet. The ability to participate spontaneously was described as desirable. Throughout the interviews, the participants, however, often stated that spontaneity in life is lacking.

The spectrum of experiences of a sense of efficacy also reached a sense of helplessness, in which the participants still attempted to carry out activities but experienced this process as increasingly difficult. The feeling of being unable to cope with the demands was dominating. At some point, the efforts and feelings were too burdensome, so that a person refrained from engaging in an activity after a personal cost-benefit consideration process:

Interviewer #2: Could you possibly elaborate a bit further on what kind of emotions that brings up in you?

#14: Frustration. [emphasis added]

#3: Frustration and you simply stop doing it [participating in life situations with a mobility assistive device].

#9: Exactly. [emphasis added] It is like a mountain that is in front of you and when you are at home and, and, and you realize, or you have gathered information, that there are these difficulties, (…), then you keep hands off it, then you stay at home. (Focus Group #4)

Frequently, a sense of helplessness preceded this refraining from an activity. The process of refraining from activities encompassed completely refraining from an activity (such as completely giving up a hobby) as well as refraining from a certain aspect (e.g. going only to certain restaurants for dinner) or intensity (such as reducing the number of working hours). One participant pointed out that this reduction of some activities reduces the number of activities as a whole.

Sense of connection

The sense of connection is defined by a subjective feeling of psychological closeness to other people and the feeling of being an integral part of a social system¹⁵ in the context of a participation domain.

The participants stated that common activities are a relevant part of a sense of connection. The focus was on engaging in activities together with others, resulting in a pleasant feeling. It encompassed activities with friends, family, or colleagues and was mostly about being active together. The nature of the activity was often not the main focus of the interviewees; the process of doing it together is what mattered.

Feeling connected was also perceived through activities where the focus did not lie on the process of carrying out activities together, but on the fact that the activities serve the aim of contributing to a social system:

(…) then the colleagues approach you and say: Look, we need this right here, do you have time? So, I also do work that is not only part of my field of work, because I simply belong to the team and for that I also work overhours, if the team needs it. (#12, Personal Interview)

In emphasizing the “work team,” she illustrated how contributing strengthens the closeness to her colleagues.

A sense of connection was also about a sense of inclusion. The participants talked about how much they felt included in a social unit, such as a group of people or society in general. Having contact was important and exceeded the mere carrying out of an activity together, as one participant stated when referring to his group of friends as “being right in the middle of it, not just on the sidelines” (#2, Personal Interview). A sense of inclusion also encompassed the feeling of “being accepted” (#11, Personal Interview) and “being taken care of” (#5, Personal Interview). One participant emphasized the importance of this feeling of inclusion for all people with multiple sclerosis and that avoiding loneliness is important.

A sense of exclusion, referring to both a specific group and society as a whole, manifested itself in a loss of social contacts and increasing social isolation.

Comparing oneself to others was an experience leading to a sense of both otherness and sameness. A sense of sameness revolved around situations in which the interviewees felt similar to others and in which distinction due to multiple sclerosis-related symptoms was not in the foreground. One participant described trying to actively elicit this sense of sameness by concealing the symptoms and thus producing social situations in which differences vanish:

During a conversation, when I get together with others, I also try to conceal it a bit (…) I am, so to say, a seating height, which means that if I sit, then you don’t really see it (…) so when I sit, I can – if you may say it like that – have a normal conversation (…). (#9, Personal Interview)

A sense of otherness expressed itself in a feeling of being distinct from another social unit, such as a group of people or society in general. This sense of otherness reflected itself in a feeling of “being completely out of place” (#11, Personal Interview) and “distant from the world” (#10, Personal Interview). The participants’ experience in these situations was characterized by a high focus on themselves and the (mostly multiple sclerosis-related) aspects that create the difference:

And there are those difficulties that come up again and again and show me: “Look, you’ve got your MS [multiple sclerosis]” and, well, that way, you realize, that you are not really equal, equally worthy – no worth, that's not the right expression – that you just cannot hear, talk, sit on the same level like others. (#9, Personal Interview)

The subjective impression that these distinct traits attract the attention of the people around them elicited a sense of otherness, which was perceived as stressful. One participant said: “Then my friend and I passed through [the shopping mall] with the wheelchair [pauses] that was a, that was a [pauses], a feeling, you just cannot imagine, it was very bad for me [pauses], I had the feeling that everybody is staring at me” (#7, Personal Interview).

In various areas of life, especially with friends, family, and work, a sense of connection was perceived through a sense of familiarity, often described as knowing each other “for an eternity.” The interviewees described how they grew into the illness together with others, which led to no major changes in interpersonal contact despite the growing impact of multiple sclerosis on physical functioning. Knowing the people with multiple sclerosis prior to or at the onset of multiple sclerosis was relevant to the development of a sense of familiarity. In contrast, one interviewee described a sense of foreignness when finding oneself in a new situation with people who do not know about the illness.

Sense of meaning

A sense of meaning encompasses a subjective feeling of significance and value¹⁵ in the context of a participation domain.

The participants described meaningful activities as a source of a sense of meaning. Some participants reflected on the degree of sense of meaning experienced when an activity is carried out. The following participant emphasized that the activity should not simply be carried out but should be carried out in a meaningful way: “So that my [partner] and I can spend a whole day somewhere again. Yes, without having to just sit somewhere on a bench or something like that, that we are actually able to look at something” (#19, Focus Group #3).

The perception of sensual experiences—such as hearing or seeing—during activities emerged as a facet of participation, as one participant illustrates: “The beauty, that I can virtually see, sense, feel it with my own eyes and my own ears and to process it by myself instead of hearing it from others” (#2, Personal Interview).

According to the interviews, a sense of meaning was also about a sense of identity formed through participation in relevant life roles. The participants described how participation domains offer space for unfolding and developing one's own identity, independent of multiple sclerosis:

(…) when I am on the street, I am the [person] with the wheelchair. But at [workplace], I am the [person] from [workplace location] or I am [name of participant] so there I am [emphasis added] a person and not limited to the MS [multiple sclerosis] or the wheelchair. (#12, Personal Interview)

Multiple participants experienced multiple sclerosis-induced changes in their environment, leading to the loss of meaningful social identities. Turning to another participation domain that offers another social identity, such as being a grandparent, could make the loss less emotionally painful.

While a sense of identity focused on the individual's self, a sense of purpose referred to a feeling that one's actions contribute to a higher societal objective that goes beyond oneself.

A sense of meaning was, from the interviewee's perspective, also about a sense of equality that embraced a feeling of equal worth of oneself in relation to other social groups or society in general. Sometimes, the participants pronounced that their feeling of being equal in relation to all of society is impaired in an all-encompassing way:

The feeling is – it is often said that everything should be done so that in everyday life, we feel the same as others and so on, but that is all nicely said on the paper (…) but then the feeling, that you are not actually taking part everywhere – nobody can really take it away from you. (#9, Personal Interview)

Participants described the lack of feeling equal as stressful. One participant emphasized that equal participation should be self-evident. When multiple sclerosis-related needs were taken into consideration by the surrounding, participants felt equally worthy: “In my department, so with my direct work colleagues, I feel like a full-fledged human-being, so to say” (#10, Personal Interview).

Discussion

The results suggest that people with multiple sclerosis and gait impairment experience a sense of connection, efficacy, and meaning¹⁵ in various forms: A sense of efficacy ranged from feeling competent, influential, and independent to experiences of dependence and lack of spontaneity. A sense of efficacy could be impaired when one felt helpless, which could lead to a trade-off process resulting in completely refraining from an activity. Similarly, a sense of connection ranged from high psychological closeness in terms of feeling included, experiencing a sense of sameness, or being able to contribute to a social system, which was accompanied by positive feelings through common activities, to low psychological closeness, when a sense of exclusion, otherness, and foreignness occurred. A sense of meaning was experienced through meaningful activities, sensual experience, a sense of purpose and identity, and a sense of equality. The senses partly express themselves in opposing sensual poles (sense of exclusion and inclusion, sense of dependence and independence, sense of sameness and otherness, sense of helplessness and competence).

The different facets of a sense of connection, efficacy, and meaning were frequently accompanied by strong expressions of positive and negative affect. This is in line with assumptions of the social identity approach to health and well-being, which indicate that meaning, connection, and efficacy are resources for enhanced health and well-being, while an impaired feeling is connected to impaired health and well-being.¹⁵ Social groups and common activities, frequently mentioned by participants of this study, were also found to be relevant to adjusting to a changed life with multiple sclerosis.²⁴ The participants describe how a sense of helplessness precedes the process of refraining from activities. Talking about when a sense of helplessness is experienced could help clinicians and patients to identify options to adapt the activity so that the person does not need to withdraw from it. The results also show that a sense of equality was fostered when the needs of people with multiple sclerosis were considered. Participatory approaches can highlight the perspectives of people with multiple sclerosis and gait impairment and lead to creating inclusive environments that are important for participation, such as workplaces.

The results share common ground with those of other studies that investigated perceptual facets of participation among populations with chronic illness or physical impairment, for example, people with early rheumatoid arthritis,¹⁴ people with spinal cord injury,²⁵ and people with physical disabilities,²⁶ in which, for example, a sense of belonging and influence¹⁴ or a sense of control²⁵ and mastery²⁶ was reported. The results could be the basis for the development of a checklist for use in clinical practice covering perceptual facets of participation of people with multiple sclerosis.

The study has some limitations that need to be considered. Although only a limited number of people responded to the invitation, a heterogeneous sample was reached with regard to gender, age, and form of multiple sclerosis. Due to the sampling considering assistive devices, our participants report moderate to severe disability, as well as an average of more than 16 years since the onset of multiple sclerosis. The methodologically rigorous process of data analysis by researchers with an interdisciplinary background, including independent coding and regular reflection and discussion sessions, ensures confidence in the presented results. All participants were members of the German Multiple Sclerosis Association Lower Saxony. This might be associated with a higher motivation to share information about the illness experiences and more access to resources, such as information. Also, disability was measured through self-assessment,²⁷ which might have yielded different values than if it had been assessed objectively.²⁸

The results indicate that although participation is sometimes objectively possible, it might not be perceived as fulfilling. This is in accordance with a study showing that the frequency of involvement in a participation domain is less strongly associated with physical and mental health measures in people with multiple sclerosis than the level of self-efficacy to participate in that activity.²⁹ This highlights the need for clinicians to consider both objective and subjective dimensions of participation when designing interventions, because they might differ.

In conclusion, the experience of participation of people with multiple sclerosis and walking difficulties encompasses a subjective perspective. While the ICF had been developed with the aim of increased inclusion of the patient's perspective,³⁰ this aim has not been implemented consistently. The person's own perspective, personal expertise, and feelings are conceptual elements of person-centredness³¹ which is a key characteristic of effective rehabilitation.³² Based on our study, perceptions mirroring the perspective of people with multiple sclerosis and walking difficulties on participation can be used for research and clinical action. It complements the literature of objective measures with the subjective component. Our study can serve rehabilitation service providers to develop interventions and to have a shared language and understanding of aspects of perceived participation in interdisciplinary teamwork of health professionals.

Clinical messages

Clinicians employing a patient-centered approach can gain insights into the subjective perspective on participation of people with multiple sclerosis and gait impairment.

Objective participation does not necessarily correspond with the perception of participation. How participation is experienced depends on the context and the feelings that arise.

When developing and evaluating interventions for people with multiple sclerosis, clinicians should incorporate the subjective perspective on participation. This includes aspects such as a sense of independence, competence, and inclusion.

Supplemental Material

sj-docx-1-cre-10.1177_02692155261458318 - Supplemental material for How do people with multiple sclerosis who have walking difficulties perceive participation? A qualitative analysis

Supplemental material, sj-docx-1-cre-10.1177_02692155261458318 for How do people with multiple sclerosis who have walking difficulties perceive participation? A qualitative analysis by Anna Levke Brütt, Elise-Marie Dilger, Nadja Reeck, Dyon Hoekstra and Annett Thiele in Clinical Rehabilitation

Footnotes

Acknowledgements

Our thanks go out to all study participants for sharing their experiences. We would like to specifically thank Anja Grau from the German Multiple Sclerosis Society Lower Saxony for the recruitment of the participants for the focus group interviews. We would like to thank Robin Forstenhäusler for transcribing the individual interviews of this study. We would also like to thank all members of the MS-PoV research group for the discussion and reflection processes within the MS-PoV project.

ORCID iDs

Anna Levke Brütt

Elise-Marie Dilger

Nadja Reeck

Author contributions

Conceptionalization: EMD, ALB. Methodology: EMD, ALB. Analysis: EMD, NR, ALB. Investigation: EMD, DH, ALB. Writing—original draft: EMD. Writing—review and editing: EMD, NR, DH, AT, ALB. Supervision: ALB, AT.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the German Federal Joint Committee's Innovation Fund under Grant 01VSF19046 (funding recipients: Hanover Medical School, Institute for Epidemiology, Social Medicine, and Health Systems Research (Consortium Leader); University of Oldenburg, Junior Research Group for Rehabilitation Science and Research Group for Education and Didactics in chronic and progressive diseases and physical disabilities, German Multiple Sclerosis Society Lower Saxony, Health Services Research Unit, AOK Lower Saxony and MS Research and Project Development gGmbH (all Consortium Partners)) and the German Pension Insurance Oldenburg-Bremen (funding recipient: University of Oldenburg for installing the Junior Research Group for Rehabilitation Science).

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

For protecting the identity of the participants, the transcripts of the focus group and individual interviews are not publicly accessible. Further anonymized excerpts for specific categories can be obtained by contacting the first author, upon giving a comprehensible rationale.

Supplemental material

Supplemental material for this article is available online.

References

Kip

Zimmermann

Krankheitsbild multiple sklerose [disease pattern of multiple sclerosis]. In: Kip

Schönfelder

Bleß

(eds) Weißbuch multiple sklerose: versorgungssituation in deutschland [white paper multiple sclerosis: care situation in Germany]. Berlin, Heidelberg: Springer Berlin Heidelberg, 2016, pp.1–12.

Kip

Zimmermann

Bleß

H-H

. Epidemiologie der multiplen sklerose [epidemiology of multiple sclerosis]. In: Kip

Schönfelder

Bleß

(eds) Weißbuch multiple sklerose: versorgungssituation in deutschland [white paper multiple sclerosis: care situation in Germany]. Berlin, Heidelberg: Springer Berlin Heidelberg, 2016, pp.13–21.

Flachenecker

Zettl

, et al. Krankheitsverlauf und prognose [course of illness and prognosis]. In: Schmidt

Hoffmann

Faiss

(eds) Multiple sklerose [multiple sclerosis]. 7th ed. München: Elsevier, 2018, pp.63–72.

Bertoni

Jonsdottir

Feys

, et al. Modified functional walking categories and participation in people with multiple sclerosis. Mult Scler Relat Disord 2018; 26: 11–18.

Sutliff

. Contribution of impaired mobility to patient burden in multiple sclerosis. Curr Med Res Opin 2010; 26: 109–119.

Pike

Jones

Rajagopalan

, et al. Social and economic burden of walking and mobility problems in multiple sclerosis. BMC Neurol 2012; 12: 94.

Negrini

Selb

Kiekens

, et al. Rehabilitation definition for research purposes. A global stakeholders’ initiative by Cochrane rehabilitation. Neurorehabil Neural Repair 2022; 36: 405–414. 20220516.

C-H

Mathiowetz

. Systematic review of occupational therapy-related interventions for people with multiple sclerosis: part 1. Activity and participation. Am J Occup Therapy 2014; 68: 27–32.

Momsen

AMH

Ørtenblad

Maribo

. Effective rehabilitation interventions and participation among people with multiple sclerosis: an overview of reviews. Ann Phys Rehabil Med2022; 65: 101529.

10.

World Health Organization. International Classification of Functioning Disability and Health: ICF. Geneva: World Health Organization, 2001.

11.

Hammel

Magasi

Heinemann

, et al. What does participation mean? An insider perspective from people with disabilities. Disabil Rehabil 2008; 30: 1445–1460.

12.

Hjelle

Vik

. The ups and downs of social participation: experiences of wheelchair users in Norway. Disabil Rehabil 2011; 33: 2479–2489.

13.

Ueda

Okawa

. The subjective dimension of functioning and disability: what is it and what is it for? Disabil Rehabil 2003; 25: 596–601.

14.

Sverker

Thyberg

Valtersson

, et al. Time to update the ICF by including socioemotional qualities of participation? The development of a “patient ladder of participation” based on interview data of people with early rheumatoid arthritis (the Swedish TIRA study). Disabil Rehabil 2020; 42: 1212–1219.

15.

Haslam

Jetten

Cruwys

, et al. The new psychology of health: Unlocking the social cure. First ed. London, New York: Routledge Taylor and Francis Group, 2018.

16.

Dilger

E-M

Reeck

Hoekstra

, et al. Impact of contextual factors on the perceived participation of people with multiple sclerosis and gait impairment using mobility assistive devices: a qualitative analysis. Health Expect 2024; 27: e70033.

17.

Jetten

Haslam

Cruwys

, et al. Advancing the social identity approach to health and well-being: progressing the social cure research agenda. Eur J Soc Psychol 2017; 47: 789–802.

18.

Michell

. Combining focus groups and interviews: telling how it is; telling how it feels. In: Barbour

Kitzinger

(eds) Developing focus group research politics, theory and practice. 1. publ ed. London: Sage, 1999, pp.36–46.

19.

Krüger

Fricke

Dilger

, et al. How is and how should healthcare for people with multiple sclerosis in Germany be designed?-The rationale and protocol for the mixed-methods study multiple sclerosis-patient-oriented care in lower saxony (MS-PoV). PLoS One 2021; 16: e0259855.

20.

Kuckartz

. Qualitative Inhaltsanalyse. Methoden, Praxis, Computerunterstützung [Qualitative content analysis. Methods, practice, using software.]. 4th ed. Weinheim, Basel: Beltz Juventa, 2018.

21.

VERBI Software. MAXQDA 2022 [computer software]. Berlin, Germany 2022.

22.

Brennan

Prediger

. Coefficient kappa: some uses, misuses, and alternatives. Educ Psychol Meas 1981; 41: 687–699.

23.

Tong

Sainsbury

Craig

. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual in Health Care: J Int Soc Qual Health Care 2007; 19: 349–357.

24.

Tabuteau-Harrison

Haslam

Mewse

. Adjusting to living with multiple sclerosis: the role of social groups. Neuropsychol Rehabil 2016; 26: 36–59.

25.

Van De Velde

Bracke

Van Hove

, et al. Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home. Int J Rehabil Res 2010; 33: 346–355.

26.

Ginis

Evans

Mortenson

, , et al. Broadening the conceptualization of participation of persons with physical disabilities: a configurative review and recommendations. Arch Phys Med Rehabil 2017; 98: 395–402.

27.

Kobelt

Berg

Lindgren

, et al. Costs and quality of life in multiple sclerosis in Europe: method of assessment and analysis. Eur J Health Econ 2006; 7: S5–S13.

28.

Skjerbæk

Boesen

Petersen

, et al. Can we trust self-reported walking distance when determining EDSS scores in patients with multiple sclerosis? The Danish MS hospitals rehabilitation study. Multiple Scler J 2018; 25: 1653–1660.

29.

Yorkston

Kuehn

Johnson

, et al. Measuring participation in people living with multiple sclerosis: a comparison of self-reported frequency, importance and self-efficacy. Disabil Rehabil 2008; 30: 88–97.

30.

Stucki

Ewert

Cieza

. Value and application of the ICF in rehabilitation medicine. Disabil Rehabil 2002; 24: 932–938.

31.

Waters

Buchanan

. An exploration of person-centred concepts in human services: a thematic analysis of the literature. Health Policy 2017; 121: 1031–1039.

32.

Wade

. What is rehabilitation? An empirical investigation leading to an evidence-based description. Clin Rehabil 2020; 34: 571–583.

33.

Kurtzke

. Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology 1983; 33: 1444–1452.

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