Multiple sclerosis (MS) challenges a person s

Occupational Adaptation in People With Multiple Sclerosis Eva Månsson Lexell, Susanne Iwarsson, Maria Larsson Lund key words: engagement, qualitative ...
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Occupational Adaptation in People With Multiple Sclerosis Eva Månsson Lexell, Susanne Iwarsson, Maria Larsson Lund key words: engagement, qualitative research, rehabilitation ABSTRACT The aim of this study was to gain an enhanced understanding of how people with multiple sclerosis experience their occupational adaptation. Ten people with multiple sclerosis were interviewed and the constant comparative method was used to analyze the data. Their occupational adaptation was experienced as a constant struggle and non-linear, and served as the means of achieving either a desired self or a desired family life. Adaptations of occupations differed according to the evolving goals of the participants. The findings showed that the participants often selected occupational adaptations to meet their family needs over their own. These findings can help professionals to establish where their clients with multiple sclerosis are in the adaptation process and offer appropriate client-centered interventions.

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ultiple sclerosis (MS) challenges a person’s engagement in occupations. A person’s ability to adapt his or her occupations is therefore of great importance for continued engagement. One goal of occupational therapy and rehabilitation is to optimize clients’ ability to engage in occupations (Townsend & Polatajko, 2007; Wade & de Jong, 2000), but there is limited knowledge of occupational adaptation in people with MS and how professionals can facilitate this process. MS is a chronic disease with an unpredictable progression. People with MS can experience difficulties engaging in occupations (Finlayson, Impey, Nicolle, & Edwards, 1998; Lexell, Iwarsson, & Lexell, 2006) that force them to struggle constantly to remain engaged (Lexell, Lund, & Iwarsson, 2009; Reynolds & Prior, 2003). Many people with MS therefore state that their identity has changed, which has implications for how they experience their lives (Boeije, Duijnstee, Grypdonck, & Pool, 2002; Lexell et al., 2009; Matuska & Erickson, 2008).

Previous research has shown that people with MS need to go through a process of change from feeling that they are “falling ill” to “coming to terms” with their illness (Malcomson, Lowe-Strong, & Dunwoody, 2008; Salick & Auerbach, 2006). Other studies have implied that the process of adaptation may not be linear and that people with chronic illness are forced to repeat their adaptations due to disease-induced deterioration (Charmaz, 1995; Paterson, 2001; Thorén-Jönsson, 2001). However, none of these studies focused specifically on MS or on adaptation in relation to engagement in occupations. Occupational adaptation is defined as the extent to which a person’s perceived identity corresponds to his or her competence performing occupations of personal importance in a relevant environment. It is an ongoing process where a person’s experiences of his or her previous occupational adaptations will influence novel challenges encountered in the future, and thereby influence his or her ongoing engagement in occupations (Kielhofner, 2008; Schkade &

Eva Månsson Lexell, PhD, Reg OT, is Occupational Therapist, Department of Rehabilitation Medicine, Skåne University Hospital, Lund, Sweden, and Post Doctoral Fellow, Department of Health Sciences, Lund University, Lund, Sweden. Susanne Iwarsson, PhD, Reg OT, is Professor, Department of Health Sciences, Lund University, Lund, Sweden. Maria Larsson Lund, PhD, Reg OT, is Associate Professor, Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå, Sweden, and Department of Health Sciences, Luleå University of Technology, Luleå, Sweden. Originally submitted January 15, 2010. Accepted for publication September 1, 2010. Posted online October 28, 2010. The authors have no financial or proprietary interest in the materials presented herein. Address correspondence to Eva Månsson Lexell at [email protected] doi: 10.3928/15394492-20101025-01 OTJR: Occupation, Participation and Health • Vol. 31, No. 3, 2011

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Schultz, 1992). Occupational therapists also use the term adaptation to describe the means and ends of an intervention. This can be the provision of an assistive device or teaching a person an alternate method of performance (i.e., adaptive occupations [Fisher, 2009]), or the state of competency as a result of an intervention (Schkade & Schultz, 1992). Research on occupational adaptation in people with MS is minimal (Cahill, Connolly, & Stapleton, 2010), particularly studies of how they adapt occupations over time. An understanding of the adaptation process is important to develop occupational therapy interventions. Thus, the aim of this study was to gain an understanding of how, when, and why people with MS adapt their occupations. More specifically, the focus was on actions undertaken to adapt occupations and why these actions were chosen.

Method

Study Design and Participants This study used a qualitative design where participants with MS shared their experiences. They were selected from 38 individuals with MS who had completed individualized, comprehensive, interdisciplinary rehabilitation. Potential participants were recruited by the first author and a clinical occupational therapist, guided by the principles of a purposive sampling strategy (Patton, 1990). Only participants who had moderate limitations in occupational performance were recruited, based on different assessments implemented during the rehabilitation period. Participants were excluded if they could not understand and actively take part in an interview. In an attempt to widen the range of experiences encountered, the participants’ age, sex, and type of limitations in occupational performance were also considered. Thirteen potential participants were identified, 10 of whom agreed to participate (six women and two men). The interviews were rich in information, and when the last interviews were analyzed, no new information came forward. Thus, the data were judged to be sufficiently comprehensive for the purpose of the study. The 10 participants had a mean age of 48 years (range: 41 to 67 years), eight had secondary progressive MS, and two had relapsing remitting MS. Their mean time since MS onset was 17 years (range: 4 to 31 years). The median disease severity, according to the Expanded Disability Status Scale (Kurtzke, 1983), was 6.5 (range: 5.0 to 8.5). Six of the participants had a partner and three were divorced; eight participants had children. Seven of the participants had full-time temporary or permanent disability pension, one had

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part-time temporary disability pension and parttime vocational training, and two were retired. Seven of the participants received private help, social service aid, and/or personal assistance; in addition, all stated that they needed help from their family and/or friends. All participants had received different community-based occupational and physical therapy interventions, assistive devices, or housing adaptations. All participants received written and verbal information about the study, were assured of confidentiality, and gave their written informed consent to participate. The Regional Ethical Review Board in Lund, Sweden, approved the study. Data Collection The first author performed all of the interviews in the participants’ homes, using a semi-structured interview guide (Kvale, 1997) with open-ended questions. The questions concerned the way in which the participant’s engagement in occupations had changed since the onset of the disease, how he or she had adapted to this change, and how the change influenced the interaction with family and friends and life in general. Nine participants were interviewed once, and one was interviewed twice due to technical problems with the tape recording during the first interview. All interviews were tape recorded and transcribed verbatim in Swedish. The mean length of the interviews was 82 minutes. Data Analysis The analysis was performed according to the constant comparative method (Strauss & Corbin, 1998). This method applies inductive reasoning to reveal processes and allows analysis of people in the context in which they function, consistent with the aim of the study. Initially, all interviews were read, followed by an open coding procedure of the Swedish text, where text with similar contents was labeled under the same code. The codes were then compared and gathered into sets of preliminary categories, with each interview being considered separately. In the axial coding, from this phase performed in English, the preliminary categories and their codes were compared and reviewed, enabling their properties and dimensions and their principal characteristics to be identified. This was accomplished by posing questions regarding adaptations: why, how, and when they were performed, influencing conditions, and their consequences. The first and third authors performed the primary analysis using an iterative process. As the results evolved, the second author was involved to increase the trustworthiness. As a final step, the three authors agreed on the results, which were discussed with a native

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Figure. The ongoing process of occupational adaptation in people with multiple sclerosis, influencing both self and family life.

English-speaking person and further discussed at an interdisciplinary seminar of professionals experienced in qualitative research.

Findings The participants experienced their occupational adaptation as ongoing and non-linear. The findings formed one core category, “adapting occupations is a constant struggle,” comprising two categories: “adapting occupations to achieve a desired sense of self” and “adapting occupations to achieve the family life desired” (Figure). Each of the categories represented separate processes but followed the same pattern (the former, the new, and the changed) where adaptations differed according to the evolving goals of the participants. Furthermore, participants often selected occupational adaptations to meet their family’s needs over their own. Adapting Occupations to Achieve a Desired Sense of Self This main category contains three subcategories: “adapting occupations to preserve the formerly capable sense of self,” “adapting occupations to find a changing sense of self,” and “adapting occupations to live with a changed sense of self.” Adapting Occupations to Preserve the Formerly Capable Sense of Self. The participants described how they adapted their engagement by concealing their shortcomings in occupations and by explaining away the difficulties they had in performing their occupations (e.g., by saying that an unsteady gait was caused by an injury). They explained how they challenged their ability to perform different tasks with the aim of preserving their capable self. They tried to preserve their occupations in the same way as they always had been conducted, even if the performance was demanding.

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Some described how they pushed themselves to ensure that they could sustain their existing positions at work, and they used much more time and effort to accomplish a work-related assignment. Others proved their capability by undertaking physically demanding occupations. Another way to preserve their former sense of self was by making temporary adaptations to their occupations. For example, participants changed their means of performing an occupation that enabled them to stay engaged in those that they prioritized. As described by one participant, “I had to put on my underwear and socks before I went to bed. . .the night before, and then I’d slept in them so that I would be able to get dressed and get to work in time [in the morning].” The participants also described how they struggled to adapt their occupations to preserve their sense of being a capable person by refusing to take on the identity of a person with a disability. Those who exemplified this said they could not bring themselves to send in the sick note they had been given because it said “multiple sclerosis” on it, or refused sickness benefits from the National Social Insurance Agency. Adapting Occupations to Find a Changing Sense of Self. The participants said that they looked for occupations that supported their feelings of capability, which helped them to come to terms with their changing self. They gave examples of how they tried to engage in occupations they had previously been interested in, but for some reason had not done for some time. In addition, they tried to identify new occupations that would make them feel capable and successful. On the other hand, avoiding occupations that may result in failure was another way of adapting. Owing to their insecurity about their abilities or their uncertainty about how they would be treated

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by other people, participants said that they had refrained from engaging in or turned down offers to participate in occupations in which they used to be involved. Thus, they believed that they were no longer able to be certain that they could control the situation. They expressed how they avoided being given assistance and were striving for independence in occupations as long as possible. Even those who were dependent on a personal assistant said that they only agreed to receive help when they were forced to do so, because it was frustrating to be dependent and because they wanted to remain independent as long as possible. The participants also described how they let other people influence their choice of occupational adaptations. These included family members, others with the same disease, and professionals, who could serve as facilitators in the adaptation process by helping the participant to reflect on other alternative ways of performance. Some said that a professional’s suggestions related to an adaptation had led to their acceptance, especially when professionals were open to the participants’ needs. However, interactions with other people could also inhibit adaptation in occupations (e.g., when other people were more concerned with occupations the participants had difficulties in performing than with those he or she was able to perform). Another dimension of this struggle was that of striving to avoid stigma. In this respect, the participants expressed ambivalence toward using assistive devices, especially mobility devices. In particular, they did not want to use a walker or a wheelchair because this confirmed their disability and made it difficult to find a changing sense of self. The participants also described how they tried to find possible ways to adapt their occupations through a process of trial and error, thereby attempting to facilitate their everyday lives. By trying out different ways of performing an occupation, the participant learned which way would be the best. This was often relevant for occupations that were conducted on a daily basis but had a great impact on the participants’ daily lives and for finding a “desired self.” Adapting Occupations to Live With a Changed Sense of Self. One way of adapting on a day-to-day basis was to plan and/or prepare for the occupations in which the participants engaged. This was undertaken by staying in control of planning, particularly when occupations directly involved others. The participants described how they only visited places they knew well and with people who made them feel secure. Thus, they kept to their normal

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routine and would never, for example, go to the grocery store during the rush hour. The participants also explained how they ignored shortcomings in their own performance of occupations and focused on the possibilities they had and on the future. They did not want to use their energy bothering about occupations they could no longer perform or engage in; it was meaningless to think about them at all. Several of the participants tried to focus on those occupations that supported their sense of self. Even if many of the participants had had to give up several of the occupations they previously engaged in, they said that they tried to occupy themselves by conducting occupations that supported their sense of well-being and thereby supported their feeling of being a capable person. This was sometimes relevant for both daily and infrequent occupations, as another participant explained: “On Saturday we are going to this concert, staying at a hotel. And I know I will be totally washed out for several days afterwards, but I do it because it is fun. . . .” Some of the participants also remarked how they had become a representative for others with MS, and how they not only shared their experiences with people with a connection to their family, but also with people in the community (e.g., by lecturing in schools about disability). Some said they had become advocates for an accessible society and worked to improve the community, whereas others were satisfied if they could support other people with MS and contribute by interacting directly with them. The participants explained how they had accepted that the modifications they had made to their occupations were necessary to enable their engagement. They also said that they had incorporated these modifications in their altered sense of self. This was a process they had to go through, and they gave examples of how they had now come to terms using different types of assistive devices and accepting assistance. In addition, several had modified the way they engaged in occupations, which, in turn, made engagement easier. One participant said, . . .the greatest change is that I need help with practical things, and it took me a very long time before I accepted that I need help showering. . . . Accepting help is a process one has to go through, one has to get used to it, even though one feels reluctant to do so.

A couple of the participants took a different approach. They had chosen to live a solitary life, meaning that their social life was restricted or was almost non-existent in comparison with earlier in life. One of them said it was nice being able to have peace and

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quiet and that he could choose when he wanted to meet other people, whereas the other participant chose to stay indoors, not meeting people outside his home. This man also described how, because he had no chance of meeting a new partner, he had learned to live without a relationship. The participants recounted how they always had to be prepared to manage new challenges to their occupations so that they could live with their changed self. Even those who had already adapted their occupations in accordance with their changed situation said that owing to deterioration in their condition or changes in their social or physical environment, they had to struggle with new adaptations to their occupations. As a consequence, they always had to be prepared for a change, which influenced the construction of their sense of self. Adapting Occupations to Achieve the Family Life Desired This main category contains three subcategories: “adapting occupations to preserve the former family life,” “adapting occupations to find a desired family life,” and “adapting occupations to live a changed family life.” Adapting Occupations to Preserve the Former Family Life. The participants recounted how their wish to preserve their former family life caused them to reject using assistive devices. They justified this by saying that they were afraid of the reactions of their family and especially their children. As one woman said, . . .they [rehabilitation professionals] said something to me about using a scooter, and it felt like a blow to my face. I had thousand thoughts running in my head, ‘Oh my God, what will John [my teenage son] think of that’?

The participants also described how they concealed problems with occupations, hoping to preserve their former family life. They were afraid to tell their families of their everyday problems. Instead they tried to live their lives as usual, engaging in familiar and typical occupations. Adapting Occupations to Find a Desired Family Life. When the participants were aware that they could no longer preserve their former family life, they introduced adaptations of occupations aiming to find the family life they desired. Instead of concealing problems, they now strove to involve their family, by making sure that the family had the same information as they did and that family members accompanied them (e.g., to their rehabilitation sessions).

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The participants said they struggled to find a desired family life by trying to share family life and responsibilities as they had always done. They surrendered parts of their life roles, such as giving up work, being signed off on long-term or permanent sick leave, or being open to the fact that different changes are necessary for family life to function. In contrast, some of the participants explained how they had to strive to find ways to have their own needs fulfilled to make family life desirable for them, too. One person explained that she had to persuade her partner, who had taken over all meal preparation, to buy and cook vegetables. She said, I baked and cooked, and I loved cooking, but one has to accept what one’s partner thinks about food, because I was a vegetarian before but now I have started to eat meat again. He [the partner] tries to satisfy some of my wishes, but it is tough at times.

Adapting Occupations to Live a Changed Family Life. Despite having accepted and learned to live with their changed family life, the participants made constant minor adaptations of occupations to enable their changed family life to continue. They said that they now shared a family life that had changed, where family members had taken joint responsibility to enable everyday life to function. They described how the family had had to change roles and modify tasks, such as splitting up shopping, where the participant could be responsible for making the list and the partner did the actual shopping. It was important for the participants to focus on occupations that enhanced family relations, and particularly their relations with their children, emphasizing the relationship rather than the occupation itself. They tried to share the company of their children’s friends, or they strove to be a role model for their children. In contrast, they also described how they could withdraw from occupations because this would enhance family relations and thereby sustain the changed family life. The participants said that they constantly were prepared to alter family plans, which was required to live the changed family life. This meant that they always had several alternative plans to facilitate occupations conducted together with the family. They also described how they tried to improve family life by protecting their family from feeling ashamed and by being sensitive to the needs of family members. Thus, the participants were careful to find a balance involving the family in occupations related directly to their illness, so that if the family was reluctant to become involved, the participants respected it. They also described that they protected

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their family, and mainly the children, when they explained to people connected to the family about their disability. The purpose of providing such information was to reduce anxiety about the disease and the disability, and to emphasize that those with disabilities do not live a different life compared to other people. As one participant explained, I have. . .explained to them [the son’s friends] about how assistive devices work. . . . They are allowed to play with my wheelchairs, walkers, and crutches, and sometimes they have a competition to see who can roll fastest down the slope in the garden. . . . I have talked about MS and disability to his class as well.

A few of the participants revealed that they had passed all responsibility to their partner. These participants relied on their spouses to do everything for them, and sometimes they even cancelled their assistant in favor of having their partner helping them. They also expected their spouses to accompany them everywhere, even to the extent of being their spokesperson (e.g., during a physician appointment). A common experience recounted by those participants who perceived that they had a pronounced disability was that they had had to make personal sacrifices to protect their family life. They had refrained from engaging in certain occupations or had decided to have occupations performed differently, in consideration of their family. One participant said, I lie in bed [in the morning]. . .when my family gets ready for school and work, and then [when they have left], the assistant comes, and at that point I really need to go to the bathroom. . . . I want to be able to sit [with the family] during breakfast. . .but I don’t want to have them [the home help] here in the morning when the family is getting ready.

Discussion The participants in this study felt that their occupational adaptations were ongoing and dynamic. This is similar to other research on people with chronic illness (Charmaz, 1995; Paterson, 2001). Still, other studies have described adaptation in people with MS as a linear process (Malcomson et al., 2008; Salick & Auerbach, 2006). These authors have focused more on the psychological aspects of adjusting to an illness and not on occupational adaptation. Our most interesting finding is that the occupational adaptations served as the means of achieving either a desired self or a desired family life. Although they had found their new sense of self/family life, the

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participants constantly had to be prepared to adapt their occupations on a daily basis. This highlights the need for professionals to work in a client-centered manner and to identify where in the process of adaptation their clients are when making recommendations. For example, if a client is trying to preserve his or her former capable self, the occupational therapist’s main focus should not be on practical things such as providing assistive devices or changes in occupational performance. Instead, the therapist should help the client to identify occupations that constitute his or her self and identity, provide him or her with information and possibilities to live his or her life to its full potential, and facilitate the client’s own empowerment. When the client is trying to find his or her new self, occupational therapists can make suggestions regarding adaptive occupations but the client should always decide about the pace for these interventions. Occupational adaptation is a process where people balance personal identity and competence during different phases in life, regardless of whether they have an illness (Kielhofner, 2008). However, when one’s life situation dramatically alters, one is forced to make substantial changes. In our study, the occupational adaptations were, to a large extent, directed to achieve a sense of self. This confirms the concept of occupational adaptation where occupations play an important role in the process of adaptation, and that identity, the self, and engagement in occupation are closely related (Boeije et al., 2002; Bontje, Kinebanian, Josephsson, & Tamura, 2004; Kielhofner, 2008; Laliberte-Rudman, 2002; Lund & Nygård, 2003; Magnus, 2001). We also found that when occupations simultaneously pertained to the person’s own needs and to the family’s needs, this often led to adaptations that prioritized the family’s needs. Previous studies of MS and families have focused on the partner’s, child’s, or caregiver’s perspective (Heward, Molineux, & Gough, 2006; Pakenham & Bursnall, 2006; Turpin, Leech, & Hackenberg, 2008), without giving the reason for choosing one adaptation above the other. Physical and social environmental factors are important factors for determining adaptations in occupations (Kielhofner, 2008; Schkade & Schultz, 1992; Spencer, Davidson, & White, 1996), but the fact that family issues could be more influential than the self has not been suggested before. Hence, family issues need to be taken into account in addition to personal identity and competence in the future development of the concept of occupational adaptation, and should be further explored and confirmed in future studies.

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Our findings can also be viewed in relation to the four dimensions of meaning through the concepts of doing, being, belonging, and becoming (Hammell, 2004; Wilcock, 1998). The main categories in our study reflect the perspectives of being, becoming, and belonging, whereas the doing perspective can be found in the properties. The findings suggest that doing itself is of secondary importance, emphasizing the importance of being able to develop a sense of self and to retain hope for the future regarding personal development and to retain being part of a context. For clinical practice, this emphasizes the need for occupational therapists to focus not only on the doing perspective, but to also help clients embrace other goals in life, (i.e., a desired self and family life). If occupational therapists support their clients’ sense of self/family life now (being, belonging) and in the future (becoming), their occupational adaptation can be enhanced. Given the qualitative design of the study, our findings were not intended to be generalized to all people with MS (Lincoln & Guba, 1985). The participants were selected from the same rehabilitation facility, so it is possible that they represent a selected group of people with MS rather than the MS population in general. Because the data were rich in information and the backgrounds of the participants were diverse, we judged the data to be adequate to ensure the trustworthiness of the study. With a prospective design, the participants might have related different experiences regarding their occupational adaptation. It was beyond the scope of this study to consider how rehabilitation influences occupational adaptation for people with MS, but such studies are clearly needed. All of the authors are occupational therapists, which might have influenced the analysis and results. The authors explored the nature of occupational adaptation experienced by these 10 participants by staying as close to the transcripts as possible. This study shows that people with MS experience their occupational adaptation as a constant struggle, aiming at achieving a desired sense of self, a desired family life, or both. When occupations simultaneously pertain to personal needs and those of the family, the family’s needs are often given priority. Gaining knowledge of and being able to recognize the different types of occupational adaptations among clients with MS may help occupational therapists offer appropriate client-centered interventions. Acknowledgments

The authors thank the participants who willingly shared their experiences and made this study possible. This work was accomplished within the context of the Centre for Ageing and Supportive Environments (CASE) at Lund OTJR: Occupation, Participation and Health • Vol. 31, No. 3, 2011

University, funded by the Swedish Council for Working Life and Social Research, and supported by the Swedish Association of Persons with Neurological Disabilities (NHR), the Norrbacka-Eugenia Foundation, the Faculty of Medicine, Lund University, and the Donation Fund for MS at the Lund University Hospital. A previous version of this manuscript was presented at the 9th AT forum, the Swedish Biennial Occupational Therapy Conference in Stockholm, Sweden, May 2009, and at the 5th World Congress of the International Society of Physical and Rehabilitation Medicine, Istanbul, Turkey, in June 2009.

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