Exploring occupational adaptation through the lives of women with multiple sclerosis.
Multiple sclerosis (MS) affects people's physical capabilities
and the lives of people with MS are constantly changing (Finlayson et al
2005), yet how people adapt to the disease from an occupational
perspective has received little attention. This study explored the
occupational adaptation of women with MS.
Seven women with MS were recruited from the Multiple Sclerosis Society of Ireland. Each participant completed the Modified Interest Checklist (Kielhofner and Neville 1983), the Role Checklist (Oakley et al 1985) and the Occupational Questionnaire (Smith et al 1986). Qualitative data were also collected, using the Occupational Performance History Interview--II (Kielhofner et al 2004).
The findings from all four tools were amalgamated and analysed. Three main themes emerged: the impact of MS on (i) performance capacity, (ii) roles and (iii) interests. The participants adapted by performing interests and roles differently and developing new meaningful interests and roles that were congruent with their performance capacity.
The findings highlight the importance of having an understanding of the impact of different types of MS on the occupational adaptation process. A greater understanding will facilitate occupational therapists in enabling people with MS to adapt to their condition by engaging in meaningful occupations throughout the lifespan.
Occupational adaptation, occupational identity, occupational competence, multiple sclerosis.
(Care and treatment)
Multiple sclerosis (Patient outcomes)
Disabled women (Care and treatment)
Disabled women (Social aspects)
Occupational therapy (Methods)
Occupational therapy (Patient outcomes)
|Publication:||Name: British Journal of Occupational Therapy Publisher: College of Occupational Therapists Ltd. Audience: Academic Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2010 College of Occupational Therapists Ltd. ISSN: 0308-0226|
|Issue:||Date: March, 2010 Source Volume: 73 Source Issue: 3|
|Topic:||Event Code: 290 Public affairs|
|Geographic:||Geographic Scope: United Kingdom Geographic Code: 4EUUK United Kingdom|
The term 'adaptation' began appearing in the occupational therapy literature in 1922 when Meyer stated that psychiatric diseases were 'largely problems of adaptation' (cited in Reed and Sanderson 1999, p77). Wood (1996) proposed three assumptions on adaptation based upon the work of Meyer: life demands an ongoing process of adaptation; disease and disability often disrupt this process; and people adapt through engagement in occupation.
Several authors have identified the need for occupational therapists to understand how adaptation varies from one person to another (Frank 1996, Carlson et al 1998, Spencer et al 1999). In recent years, theories on the concept of adaptation from an occupational perspective have emerged within the Occupational Adaptation Model (Schkade and Schultz 1992) and in the Model of Human Occupation (MOHO) (Kielhofner 2008).
Occupational adaptation is defined by Kielhofner (2008, p107) in MOHO as 'the construction of a positive identity and achieving occupational competence over time in the context of one's environment'. As people choose, pattern and perform occupations over time, they develop their identity and competence, which together determine their level of occupational adaptation. Occupational identity is defined as 'the composite sense of who one is and wishes to become as an occupational being generated from one's history of occupational participation' (Kielhofner 2008, p106). It is viewed as a reflection of one's life experiences, which are accumulated over time and then arranged into an understanding of who one is and wishes to become in the future. Occupational competence is defined as 'the degree to which one sustains a pattern of participation that reflects one's identity' (Kielhofner 2008, p107). It is linked to what a person does and includes organising one's time for responsibilities, participating in interests, working toward goals and fulfilling role expectations.
Multiple sclerosis (MS) affects 2.5 million people worldwide (National MS Society 2009). It is a chronic, progressive neurological condition, which affects three times more women than men (Olsson et al 2005). Symptoms of MS include fatigue, tremor, motor weakness, visual and cognitive impairment, dysphagia and dysarthia (Joy and Johnson 2001). There are four types of MS: relapsing remitting, primary progressive, secondary progressive and progressive relapsing. Relapsing remitting and primary progressive MS are the most common. Eighty-five per cent of people present with relapsing remitting MS initially, which typically manifests as periods of exacerbation followed by partial or complete recovery periods. Primary progressive MS is experienced by 10% and presents as a continuous worsening of symptoms over time with no distinct remission (National MS Society 2009).
The progressive unpredictable nature of the symptoms of the disease means that people with MS have to adapt continuously to the disability related to the condition. The ability to perform activities of daily living is reduced as MS progresses, with a major decline in the ability to carry out activities of daily living occurring 5 years post-diagnosis (Gulick 1998, Finlayson et al 2005). Typically, people are diagnosed with MS between the ages of 20 and 40 years. At this time, people have already established their identities as people without a disability and have developed careers and relationships (Finlayson et al 2005, National MS Society 2005). Given that the symptoms of MS are varied, and the overall course of the disease is unpredictable in nature, the lives of people with MS are constantly changing (Halper and Holland 1998, Finlayson et al 2005). Research evidence exists on how people adapt to MS from a psychological perspective (Nichols 1984, Hopman et al 2000), yet there has been limited research into the concept of adaptation to MS from an occupational perspective.
A phenomenological single case study by Finlay (2003) described the impact that a new diagnosis of MS can have on one's occupational identity. Following completion of an unstructured interview with one woman with MS, Finlay (2003) constructed a narrative of the first year of her life since her diagnosis. It highlighted the woman's struggle to maintain her identity in her role as a mother while keeping her identity as a person with MS hidden. Finlay (2003) found that the woman coped by living in the present and fulfilling her valued role as a mother. Although the research focused upon the impact of the first year of a diagnosis of MS on one individual woman's identity, it also sheds some light on how participation in everyday occupations is affected by the early diagnosis of MS and how maintaining one's valued roles may enable adaptation to MS.
Psychological adaptation to MS suggests that people with MS undergo an adaptation process in response to a decline in their physical functioning (Nichols 1984, Hopman et al 2000, DiLorenzo et al 2004). Quantitative studies examining the impact of MS on participation in daily living activities highlighted that MS can affect people's ability to participate in everyday occupations (Lundmark and Branholme 1996, Finlayson et al 1998, Manson and Lexell 2004). However, these studies did not explore how people adapted to the difficulties in participating in everyday activities. Further qualitative research was recommended by Manson and Lexell (2004) to provide a more comprehensive perspective on the impact of MS on daily living activities. In the light of the dearth of research into occupational adaptation and its constructs of occupational identity and occupational competence in people with MS, the present study explored the occupational adaptation of a group of women with relapsing remitting and progressive MS.
A primarily qualitative approach was used to explore the occupational adaptation of women with MS. Qualitative research is defined broadly as research in which findings are arrived at from real world, context-specific settings, where the issue being studied occurs naturally (Patton 2002). Within this qualitative framework, a descriptive approach was adapted. Descriptive research aims to provide a rich descriptive account of the issue being studied within a particular context (Carpenter and Suto 2008). The notion of the subjective individual experience of the performance of occupation has been developed in MOHO (Kielhofner 2008), within the concept of the lived body (Kielhofner 2008). The concept of the lived body refers to the entity of mind and body as well as the subjective experience of performance. This study sought to develop an understanding of participants' individual experiences of adaptation following a diagnosis of MS.
The main method of exploring occupational adaptation was through the use of the Occupational Performance History Interview--Second Version (OPHI-II) (Kielhofner et al 2004), which is a semi-structured interview guided by the constructs of MOHO. Interviewing allows the researcher and the participants to collaborate so that the interviewee can describe and explore the meaning of his or her experiences (Kielhofner and Mallinson 1995, Beer 1997, Gray and Fossey 2003). Morse and Field (1995) have suggested that a semi-structured interviewing approach facilitates a focused exploration of the research topic.
Kielhofner (2008) recommended the use of self-report questionnaires to inform discussions between therapists and clients. Completion of three MOHO checklists, the Modified Interest Checklist (Kielhofner and Neville 1983), the Role Checklist (Oakley et al 1985) and the Occupational Questionnaire (Smith et al 1986), prior to the qualitative interview, served to focus the participants on the impact of the MS diagnosis on themselves as occupational beings. This also allowed each participant time to reflect and consider the occupational impact of MS, which would lead to more in-depth discussion with the participant about her daily occupations in the semi-structured interview (this would be explored in more depth under the five thematic areas of the OPHI-II interview).
Ethical approval for the study was obtained from the Research Ethics Committee, Faculty of Health Science, Trinity College Dublin, prior to commencement.
Participants were recruited to the study using a convenience sampling strategy. Based on research indicating that more women than men were affected with MS (Olsson et al 2005) and that people with MS show significant functional limitations 5 years post-diagnosis (Gulick 1998), participation in this exploratory study was sought from women with relapsing remitting and progressive MS who were at least 5 years post-diagnosis and were willing to give informed consent.
Data collection tools
Occupational Performance History Interview--Second Version (OPHI-II)
The OPHI-II is a semi-structured tool that gathers information on past and present occupational adaptation. It consists of three parts: a semi-structured interview, rating scales and a life history narrative. The semi-structured interview gathers qualitative data in a structured way across the five thematic areas of activity choices, critical life events, daily routine, occupational roles and occupational behaviour settings. The qualitative data obtained in the interview informs the completion of the three rating scales of occupational identity, occupational competence and occupational behaviour settings. Kielhofner et al (2001) studied the validity and sensitivity of the OPHI-II and found that 92% of raters used the scales validly and also confirmed that the three scales measured occupational competence and identity validly across nationality, diagnostic status and age.
Each participant completed three MOHO self-rating questionnaires or checklists as follows.
The Occupational Questionnaire is a self-report questionnaire that requires the person to record work, rest, daily living or self-care tasks for each half-hour period during the day. The person rates the level of importance and enjoyment and how well he or she feels that he or she performs the tasks. The Occupational Questionnaire has been shown to be valid (Smyntek et al 1985, Barris et al 1988, Ebb et al 1989, Kielhofner and Brinson 1989). Test-retest reliability was established as the per cent agreement on items in the questionnaire and ranged from 68% to 87% (Ebb et al 1989).
The Role Checklist, developed for use with the MOHO, provides information on a person's perception of his or her value and participation in occupational roles in the past, the present and the future. The content validity of the Role Checklist has been established (Kielhofner 2008). The test-retest reliability (r = 0.82) of the Role Checklist was established by Oakley et al (1985).
Modified Interest Checklist
The Modified Interest Checklist is a leisure interest inventory, which has 68 interests in which respondents indicate their past, current and possible future interests.
Potential participants were informed of the study through an information leaflet distributed on behalf of the researcher by the regional branch of the MS Society. Eighteen members of the Society who were interested in the study replied to the researcher. The researcher purposively selected a sample of seven participants (who met the inclusion criteria) in order to facilitate prolonged contact to explore occupational adaptation in an in-depth manner. The participants selected had either relapsing remitting or progressive MS and represented a range of (i) ages and (ii) number of years since diagnosis.
The participants were contacted by the researcher by telephone and had the study explained to them; a date was set for a first meeting in a location of the participant's choice. The researcher met with each participant on three occasions in the participant's own home. The purpose of the first meeting (approximately 45 minutes in duration) was to allow the researcher to meet each participant, introduce herself, explain the study in greater detail, answer any questions related to the research and issue the consent form. At the second meeting (1-2 weeks later), the researcher collected the signed consent form and the participants were asked to complete the Occupational Questionnaire, the Modified Interest Checklist and the Role Checklist while the researcher was present. The researcher took the completed checklists with her and a date was set for the third meeting.
Prior to the third (final) meeting, the researcher reviewed each individual's completed checklists. The data generated assisted in establishing participants' roles, interests and daily routine and informed the OPHI-II semi-structured interview format, giving more time to gain depth of information with each participant in relation to the thematic areas of roles, activities and daily routine. Each participant was met by the researcher 2 weeks later for the final meeting in order to complete the OPHI-II interview. Although the participants' individual interests and roles differed somewhat, all the participants were asked semi-structured questions in a similar format during the interviews relating to the five thematic areas of the OPHI-II (roles, interests, activity choices, occupational behaviour settings and critical life events), as directed by the OPHI-II user manual. The duration of interviews ranged from 50 minutes to 130 minutes.
The data obtained in this study consisted of a mixture of quantitative and qualitative data collated from the variety of assessment tools used. The data generated by the Modified Interest Checklist, the Role Checklist and the Occupational Questionnaire were reviewed generally prior to the OPHI-II interview and were used by the researcher to inform the daily routine, occupational roles and activity choice thematic areas of the OPHI-II interview. A review of the data generated by these tools gave the researcher a deeper understanding of the participant's life story (Kielhofner 2008) prior to completion of the OPHI-II. This facilitated depth of data collection in each of the thematic areas of the OPHI-II interview. The qualitative interviews were transcribed verbatim.
A life history summary, narrative slope and the occupational competence and occupational identity rating scales were completed for each participant. The ratings were then summarised on the OPHI-II summary sheet, which served to illuminate the areas of difficulty that each participant experienced in occupational competence and occupational identity.
Thematic analysis was conducted to identify themes and subthemes (Braun and Clarke 2006). The researcher manually highlighted chunks of data within each participant's interview to form codes. The codes were grouped together, then examined individually and across the data set to generate themes. These themes were reviewed and refined by the co-authors and a final thematic map showing the emergent themes and subthemes was created. In addition, descriptive analysis of items on the occupational identity and occupational competence rating scales was completed using the Statistical Package for the Social Sciences, Version 15 (SPSS 2006), enabling comparison of the impact of MS across the data set.
Lincoln and Guba (1985) described four criteria that indicate trustworthiness in qualitative studies: credibility, transferability, dependability and confirmability. Credibility refers to having research findings that are believable to the reader (Carpenter and Suto 2008) and transferability refers to the degree to which the findings can be generalised or transferred to other contexts or settings (Lincoln and Guba 1985). Credibility and some element of transferability of the findings of the study were established through the use of member checking, prolonged engagement and triangulation (Carpenter and Suto 2008). Member checking was achieved within each interview by the researcher reiterating information received periodically during the interviews to ensure that information was being understood correctly and achieved following the interviews by sending the interview transcripts and the life history narrative to each participant (Carpenter and Suto 2008). Prolonged engagement was achieved by visiting each participant three times in total over the course of the study to ensure the credibility of the findings. The triangulation of the findings was facilitated by using multiple methods of data collection, for example using checklists, life history narratives and interviews (Carpenter and Suto 2008).
Detailed documentation of the research process including transcripts was maintained to illustrate confirmability. A reflexive journal was kept by the researcher in order to make subjectivity explicit. Reflections included the researcher's thoughts and emotions regarding the interview process, participants' reactions to various questions, nonverbal communication and observations about the home environment. These were recorded following the interviews and were considered to make subjectivity explicit (Carpenter and Suto 2008). These reflections added to the confirmability of the findings.
Seven women participated in the study, ranging in age from 30 to 42 years. Three of the participants had progressive MS and four had relapsing remitting MS. The time since the diagnosis of their disease ranged from 5 years to 20 years. Table 1 summarises the demographic details of each of the seven participants in this study. Pseudonyms are used throughout to protect the identity of participants of this study.
The data generated from the tools used have been integrated and presented as a composite of the four MOHO assessments (Kielhofner 2008). Within the MOHO framework, the findings correspond with the three subsystems of performance capacity, volition and habituation. The findings are presented within the three main themes of (i) impact on performance capacity; (ii) impact on interests and (iii) impact on roles (see Fig. 1). Within the theme of impact on performance capacity, three subthemes emerged: fatigue, motor deficits and sensory deficits. Within the theme of impact on interests, three subthemes emerged: maintaining prior interests, loss of interests and developing new interests. Within the theme of impact on roles, two subthemes emerged: impact of MS on the worker role and impact on personal roles.
Within this study, the participants' physical performance capacity was affected by the symptoms of MS. Three main areas of performance capacity deficit emerged: fatigue, motor deficits and sensory deficits.
Fatigue was the most commonly reported symptom of MS, having an impact upon the lifestyle of six of the seven participants. Two participants with progressive MS, Anna and Lisa, spent 8 hours per day resting:
Rest is very important for me. Most of my time off is taken up with resting (Lisa).
All participants in the study reported a decrease in their motor abilities. The participants with progressive MS experienced symptoms of stiffness, soreness and muscle weakness, which had an impact on their ability to walk. These impairments were more marked in participants with progressive MS than in those with relapsing remitting MS. Anna, who had progressive MS, was unable to weight bear through her lower limbs and used a wheelchair to mobilise whereas the other two participants with progressive MS used wheelchairs for outdoor mobility. Four participants, two with progressive MS (Anna and Lisa) and two with relapsing remitting MS (Joanne and Elaine), experienced weakness in their upper limbs affecting their manual dexterity. Sensory deficits, such as a lack of sensation in the lower limbs, was reported by all participants with progressive MS.
[FIGURE 1 OMITTED]
In this study, the participants' patterns of engagement in interests changed over time. Some participants maintained prior interests with certain changes in how they performed their interests whereas other participants no longer engaged in previous interests owing to fatigue and motor symptoms. New interests were developed by the participants, which demanded less physical endurance and fewer motor abilities.
Maintaining prior interests
All participants maintained some prior interests, which were sedentary in nature and required little physical activity. Reading and watching television were interests maintained by the three participants with progressive MS and one participant with relapsing remitting MS. The other three participants with relapsing remitting MS (Nora, Caroline and Joanne) maintained their prior interests by developing new ways of engaging in their interests, which they valued. Joanne no longer completed heavy gardening tasks and, instead, nurtured small houseplants. Nora and Caroline had difficulty in going for walks since their diagnosis of MS, but continued to maintain the interest by reducing the distance they walked:
I still go walking. I go half the distance that I used to, to make sure that I have the energy to come back. You learn your limitations (Caroline).
Part of this adaptation to the restriction posed by MS appears to have evolved through a process of gaining an understanding of how the symptoms of MS affected them individually and how they could maintain a level of participation within their own individual capacity.
Maintaining full-time paid employment combined with the symptoms of fatigue had a negative impact on the capacity to maintain interests outside work:
I don't have much energy. I come home and want to switch off completely. I don't feel like going outside the door (Elaine).
Loss of interests
The participants reported internal factors, such as fatigue and motor symptoms, as reasons for the loss of interests. Cycling, walking, swimming, socialising and going to the cinema were all examples of interests that were lost as the MS symptoms progressed:
Physical activity, be it exercise, swimming, all these things are out. I can do them but the effort required is just too much. There's no payback for the effort that goes in (Geraldine).
External physical environmental factors prevented participation in interests for participants with progressive MS:
There are no swimming pools that are accessible to people with disabilities unless you organise it through an association. So that means you are stuck to a particular time and stuck going with people who have a disability rather than being allowed to go with normal people (Lisa).
The lack of flexibility in organising to engage in leisure interests was highlighted. This was in part due to physical environmental barriers but, as indicated by Lisa, the efforts employed to facilitate people with disabilities were unintentionally leading to some element of stigmatisation.
Developing new interests
Although some participants reported a loss of interests, others developed new interests that required less physical effort than previous leisure interests; for example, listening to music and playing bridge. One participant with progressive MS described her reasons for engaging in bridge:
It was something I could just sit down and do. There was nothing physical about it (Geraldine).
Within this study, the theme of 'roles' describes how participants' patterns of engagement with work and personal roles had changed since their diagnosis of MS.
Fatigue, motor and sensory deficits had an impact upon participants' ability to fulfil their work roles. Despite these symptoms, some participants remained in their work roles and acknowledged that their employers had facilitated this by offering them reduced work hours or different work tasks. However, being facilitated to continue in their work role with changes, such as reduced hours of work or altered work tasks, resulted in the participants experiencing dissatisfaction and a lack of personal meaning and value with their adapted work role:
Before I worked more and I worked differently. Then it was a career, now it's just a job. I don't enjoy it. I don't find it very challenging (Geraldine).
Two participants, Lisa and Joanne, resigned from their work roles and assumed new part-time student roles, with the intention in both participants of resuming employment:
On an ordinary day there would be no structure or routine. I get up when I feel like it, except the day I go to college (Lisa).
The participants discussed three categories of change to personal roles since the onset of MS: loss of roles, role reversal and unfulfilled roles.
Previous friendships that had evolved around shared participation in leisure and sporting interests were particularly vulnerable as the MS symptoms progressed. The loss of the role of friend was reported by five of the seven participants, who perceived this loss as being linked with restrictions in participating in former active interests outside the home environment:
You have nothing to say because you haven't been anywhere or done anything and you haven't seen anybody (Lisa).
Forced changes to their living arrangements resulting directly from MS, particularly for those women who were single, were common. The most usual change occurring was returning to live with parents and the subsequent role reversal that occurred within the family dynamic as a result of this changed living circumstance. Role reversal within family roles, with ageing parents assuming a carer role for their adult child who had returned to live in the family home, was reported by all three participants with progressive MS:
I don't really have a role anymore. My mother has become my carer. You don't envisage the seventy one year old doing the basic care for the thirty eight year old. It would usually be the reverse (Lisa).
The women with progressive MS also discussed a loss of future anticipated roles, or the non-availability of roles, that would normally be considered appropriate for women of their age. There was a sense of MS having deprived them from fulfilling potential roles in the future that they would have aspired to or valued. For example, the participants with progressive MS expressed dissatisfaction with their lack of opportunities to fulfil roles, such as the role of wife and mother, which they perceived as unfulfilled due to the impact of MS:
If MS wasn't an issue, I would have different expectations of the future. I would expect to be married and have children (Geraldine).
Descriptive analysis of the women's scores on the occupational competence and identity rating scales was completed to ascertain the impact of MS on competence and identity Although these scores add to the thematic findings, the number of participants in the study was small (n = 7) and, therefore, the scores need to be interpreted with caution. Table 2 illustrates that the individual scores for the women with progressive MS tended to be mostly 2s, indicating dysfunction in their occupational competence, whereas the scores of the women with relapsing remitting MS tended to be mostly 3s. This illustrates that the women with progressive MS experienced a greater impact on their occupational competence than those with relapsing remitting MS. Table 3 highlights the impact of MS on their occupational identity. A review of the scores indicated that those with progressive MS tended to score mainly 2s and 3s whereas those with relapsing remitting MS scored 3s and 4s.
The overall scores for the group are summarised in Table 4. These scores highlight that the occupational competence of the whole group was affected by MS, with the occupational competence of participants with progressive MS being more affected than that of participants with relapsing remitting MS. In addition, the overall scores indicated that the participants experienced less occupational dysfunction in occupational identity than in occupational competence. The participants with progressive MS had scores indicating dysfunction in identity whereas those with relapsing remitting MS had scores indicating satisfactory occupational functioning in relation to their occupational identity.
The findings indicate that MS had an impact on elements of the performance capacity, habituation and volition of all participants. Within performance capacity, symptoms of fatigue, motor and sensory impairment had more impact upon the lives of participants with progressive MS than that of those with relapsing remitting MS. The participants with relapsing remitting MS changed how they participated in interests in order to continue engaging in valued interests. In contrast, all participants with progressive MS lost interests and subsequently developed new interests, which were less physical in nature and involved less social interaction than their previous interests. All the women experienced some disruption to role participation, particularly in their ability to maintain their worker role. Those with progressive MS felt that they were excluded from participating in potential future roles such as motherhood.
In this study, successful occupational adaptation in women with MS involved a process of rebuilding occupational identity and achieving occupational competence by participating in meaningful interests and roles that were compatible with their performance capacity. Changing the way participants engaged in work roles and changing their level of participation in leisure interests (for example, singing and walking) were strategies that the participants employed to participate competently in meaningful activities in response to the challenges imposed by MS. When the participants lost some roles and interests, they adapted occupationally by engaging in alternative satisfying occupations that were congruent with their physical capabilities, strengthening their occupational identity and competence and, consequently, facilitating their occupational adaptation (Kielhofner 2008). This is consistent with the notion that creating solutions to overcome difficulties in occupational participation in order to facilitate engagement in meaningful occupation is an indicator of successful occupational adaptation. Spencer et al (1999) and Bontje et al (2004) contended that adaptation to a disease requires active engagement in fulfilling occupations.
Kielhofner (2008) maintained that occupational identity and competence are different yet interrelated components of occupational adaptation. This assertion is supported by the findings of this study, where both occupational competence and identity were affected by MS. The participants' occupational competence was more affected by MS than the participants' occupational identity. Qualitative and quantitative findings indicated that the participants with progressive MS experienced a greater impact on their occupational competence than those participants with relapsing remitting MS. However, participants with progressive MS had scores indicating that MS affected their identity whereas MS had little impact on the occupational identity of participants with relapsing remitting MS. The preservation of the identities of the women with relapsing remitting MS appears to be connected to their ability to sustain their participation in past interests and roles by adapting their level and ways of participation, particularly during disease remission. These findings reinforce the interrelatedness of the occupational competence and identity and echo the findings of studies by Mallinson et al (1998) and Kielhofner et al (2001), who found that disability had an impact on both occupational competence and identity but had more of an impact upon competence than identity.
Occupational competence may have been more affected than occupational identity in this exploratory study due to all participants having performance capacity limitations, such as fatigue. Fatigue as the most common and disabling symptom of MS is consistent with several studies (Krupp et al 1988, Bergamaschi et al 1997, Olsson et al 2005). In this study, it particularly affected participants' ability to engage in the worker role, which is consistent with the literature (Jongbloed 1996, Halper and Holland 1998, Kinkel 2000, Olsson et al 2005). Participation in full-time employment may have resulted in less time for participants to rest and manage their fatigue, which may have had an impact on their occupational competence in activities and, therefore, affected negatively the process of occupational adaptation. Within this study, the findings suggest that participation in a more meaningful work role in a part-time capacity may offer people with MS the opportunity to manage fatigue and be more satisfied with their worker role, influencing positively their identity, competence and occupational adaptation. Fatigue management is the most commonly addressed symptom of MS in occupational therapy interventions (Townsend 2008). Yet, there is a need for occupational therapists to tailor fatigue management programmes to meet the needs of individuals with different disease patterns of MS who are in part-time and full-time employment so as to facilitate occupational adaptation to the disease.
The participants with relapsing remitting MS achieved more successful occupational adaptation than the participants with progressive MS. Their occupational competence and identity were less affected than for those with progressive MS. This may be explained by the different patterns of disease presentation experienced by the two groups of women with MS (Halper and Holland 1998). Those with relapsing remitting MS experienced some symptom remission, which may have offered them the opportunity to participate in their valued interests and roles, enabling them to maintain their occupational competence by sustaining their patterns of participation linked with their identity (Kielhofner 2008). Another plausible explanation for the achievement of successful occupational adaptation in those with relapsing remitting MS may be that they viewed MS relapses as temporary 'occupational disruptions'. Whiteford (2000, p210) defined occupational disruption as 'a temporary state that occurs when a person's normal pattern of occupational engagement is disrupted by significant life events, environmental changes, becoming ill or sustaining injury from which full recovery is expected'. For those with relapsing remitting MS, relapses may have been perceived as 'occupational disruptions', temporarily affecting their ability to choose and participate in occupations, whereas during remissions they were able to resume participation in valued occupations. Therefore, the women with relapsing remitting MS may have had more opportunities to achieve successful occupational adaptation than those with progressive MS. It is important that occupational therapists have contact with MS clients in the initial stages of the disease. This contact could empower clients to participate in a range of valued occupations to support and build their sense of identity and competence to facilitate the ongoing adaptation process to MS.
The International Classification of Functioning, Disability and Health (World Health Organisation 2001) proposes that the environment has the ability to facilitate or inhibit participation in activities. Kielhofner (2008) described occupational behaviour settings as the social and physical environments that surround the person and that these settings can inhibit or facilitate the occupational adaptation process, which is supported in the findings of this study. Work, leisure and home environments constrained participants' engagement in occupations, had an impact upon their occupational competence and identity and constrained their occupational adaptation.
The findings suggest that occupational therapists must ensure that they focus interventions not only on the home environment but also on the work and leisure environments to facilitate successful occupational adaptation to MS. Townsend (2008) found that professionals are more focused on symptom management than on workplace interventions when working with people with MS. In the light of the findings of this study, occupational therapists need to broaden the interventions offered to people with MS by maximising their involvement with workplace environments in order to enable people to maintain meaningful aspects of their worker role. This may involve occupational therapists collaborating with clients and their employers with respect to work role changes. Such collaboration may enable the identification of valued aspects of the worker role that are within the client's performance capabilities and that can be retained to ensure competence in the work role and preservation of a client's occupational identity. Additionally, occupational therapists need to seize opportunities to collaborate with architects, politicians and those responsible for public accessibility in order to raise awareness of designing universally accessible work and leisure environments. Collaboration of this nature will pave the way for people with all types of disability to participate in meaningful occupations in a variety of environments.
Limitations of the study
In evaluating the significance of this research, it is important to acknowledge the limitations of this exploratory study. A convenience sample of women from a specific geographical area with relapsing remitting and progressive MS was used to generate data on occupational identity, competence and adaptation. Exploring occupational adaptation in two types of MS could be considered a limitation. However, others may view this as a strength because it offers insights into the occupational adaptation of the two types of MS that present in the realities of an occupational therapy caseload.
Although a small sample size was used in this study, and the findings do not necessarily reflect the experiences of all women with MS, member checking, prolonged engagement and providing a detailed description of the participants and procedures used may facilitate the transferability of findings (Lincoln and Guba 1985). Suggestions for future research include longitudinal research into the occupational adaptation process of a larger size sample of people with a specific type of MS and research focusing on either occupational competence or occupational identity exclusively with a particular type of MS.
This exploratory study highlighted that successful occupational adaptation involved participation in meaningful roles and interests that were congruent with participants' performance capacity. For all the participants, MS had a greater impact on occupational competence than occupational identity. The women with progressive MS had greater difficulty in achieving occupational adaptation than those with relapsing remitting disease. MS is a progressive lifelong disease and the findings of this study illustrate that occupational therapists need to develop an understanding of occupational adaptation, and its components of occupational competence and identity, so that meaningful interventions beyond symptom management are offered (Townsend 2008). This understanding will facilitate ongoing occupational adaptation for those with MS.
Thanks are extended to the participants who volunteered for this study and to the staff of the MS Society of Ireland.
* Occupational adaptation to MS involved participation in meaningful roles and interests that were congruent with participants' performance capacity.
* MS had a greater impact on occupational competence than on occupational identity for all participants.
* Women with progressive MS had greater difficulty in achieving occupational adaptation than those with relapsing remitting MS.
What the study has added
The identification of differences between women with relapsing remitting MS and those with progressive type MS in their occupational adaptation to this disease, including the impact on their occupational identity and occupational competence.
Barris R, Dickie V, Baron K (1988) A comparison of psychiatric and normal subjects based on the Model of Human Occupation. Occupational Therapy Journal of Research, 8, 3-37.
Beer D (1997) 'There's a certain slant of light': the experience of discovery in qualitative interviewing. Occupational Therapy Journal of Research, 17, 110-29.
Bergamaschi R, Roman A, Versono M, Poli R, Cosi V (1997) Clinical aspects of fatigue in multiple sclerosis. Functional Neurology, 12(5), 247-51.
Bontje P, Kinebanian A, Josephsson S, Tamura Y (2004) Occupational adaptation: the experiences of older persons with physical disabilities. American Journal of Occupational Therapy, 58(2), 140-49.
Braun V, Clarke C (2006) Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 71-101.
Carlson M, Clark F, Young B (1998) Practical contributions of occupational science to the art of successful aging: how to sculpt a meaningful life in older adulthood. Journal of Occupational Science, 5, 107-18.
Carpenter C, Suto M (2008) Qualitative research for occupational therapists and physical therapists: a practical guide. Oxford: Wiley-Blackwell Publishing.
DiLorenzo T, Halper J, Picone M (2004) Comparison of older and younger individuals with multiple sclerosis. Rehabilitation Psychology, 49(2), 123-25.
Ebb E, Coster W, Duncombe L (1989) Comparison of normal and psychosocially dysfunction male adolescents. Occupational Therapy in Mental Health, 9(2), 53-74.
Finlay L (2003) The intertwining of body, self and world: a phenomenological study of living with recently diagnosed multiple sclerosis. Journal of Phenomenological Psychology, 34(2), 157-78.
Finlayson M, Impey M, Nicolle C, Edwards J (1998) Self-care, productivity and leisure limitations of people with multiple sclerosis in Manitoba. Canadian Journal of Occupational Therapy, 65, 299-308.
Finlayson M, Van Denend T, Dalmonte J (2005) Older adults' perspectives on the positive and negative aspects of living with multiple sclerosis. British Journal of Occupational Therapy, 68(3), 117-24.
Frank G (1996) Life histories in occupational therapy clinical practice. American Journal of Occupational Therapy, 50(4), 251-62.
Gray M, Fossey E (2003) Illness experience and occupations of people with chronic fatigue syndrome. Australian Journal of Occupational Therapy, 50, 127-36.
Gulick E (1998) Symptoms and activities of daily living trajectory in multiple sclerosis: a ten-year study. Nursing Research, 47(3), 137-46.
Halper J, Holland N (1998) Meeting the challenge of multiple sclerosis. American Journal of Nursing, 98(11), 39-44.
Hopman W, Coo H, Brunet D, Edgar C (2000) Longitudinal assessment of health-related quality of life of patients with multiple sclerosis. International Journal of Multiple Sclerosis Care, 2, 15-26.
Jongbloed L (1996) Factors influencing employment status of women with multiple sclerosis. Canadian Journal of Rehabilitation, 9, 213-22. Joy J, Johnston R (2001) Multiple sclerosis: current status and strategies for the future. Washington, DC: National Academy Press.
Kielhofner G (2008) Model of Human Occupation: theory and application. 4th ed. Baltimore: Lippincott, Williams and Wilkins.
Kielhofner G, Brinson M (1989) Development and evaluation of an aftercare program for young and chronic psychiatrically disabled adults. Occupational Therapy in Mental Health, 9(2), 1-25.
Kielhofner G, Mallinson T (1995) Gathering narrative data through interviews: empirical observations and suggested guidelines. Scandinavian Journal of Occupational Therapy, 2, 63-68.
Kielhofner G, Neville A (1983) The Modified Interest Checklist. (Unpublished manuscript.) Chicago, IL: University of Illinois at Chicago.
Kielhofner G, Mallinson T, Forsyth K, Lai J (2001) Psychometric properties of the second version of the Occupational Performance History Interview. American Journal of Occupational Therapy, 55, 260-67.
Kielhofner G, Mallinson T, Crawford C, Nowak M, Rigby M, Henry A, Walens D (2004) Occupational Performance History Interview--II (OPHI-II) (Version 2). Chicago, IL: Model of Human Occupation Clearing House, Department of Occupational Therapy, College of Applied Sciences, University of Illinois.
Kinkel R (2000) Fatigue in multiple sclerosis. Reducing the impact through comprehensive management. International Journal of MS Care, 2(Suppl.), 2-9.
Krupp L, Alvarez L, LaRocca N, Scheinberg L (1998) Fatigue in multiple sclerosis. Archives of Neurology, 45, 435-37.
Lincoln Y, Guba E (1985) Naturalistic inquiry. New York: Sage.
Lundmark P, Branholm I (1996) Relationship between life satisfaction in people with multiple sclerosis. Disability and Rehabilitation, 18(9), 449-53.
Mallinson Y, Maheffy L, Kielhofner G (1998) The Occupational Performance History Interview: evidence for three underlying constructs of occupational adaptation. Canadian Journal of Occupational Therapy, 65, 219-28.
Manson E, Lexell J (2004) Performance of activities of daily living in multiple sclerosis. Disability and Rehabilitation, 26(1), 576-85.
Morse J, Field P (1995) Qualitative research methods for health professionals. Thousand Oaks, CA: Sage.
National Multiple Sclerosis Society (2005) Epidemiology of MS (online source book). Available at: http://www.nationalmssociety.org Accessed on 16.03.05.
National Multiple Sclerosis Society (2009) Available at: http://www.national mssociety.org/about-multiple-sclerosis/FAQs-about-MS/index Accessed on 04.02.09.
Nichols E (1984) Effect on gender, age and disease progression on emotional adjustment in multiple sclerosis patients. Tempe, AZ: Arizona State University.
Oakley F, Kielhofner G, Barris R (1985) An occupational therapy approach to assessing psychiatric patients' adaptive functioning. American Journal of Occupational Therapy, 39, 147-54.
Olsson M, Lexell J, Soderberg S (2005) The meaning of fatigue for women with multiple sclerosis. Journal of Advanced Nursing, 49(1), 7-15.
Patton M (2002) Qualitative evaluation and research methods. 3rd ed. Thousand Oaks, CA: Sage.
Reed K, Sanderson S (1999) Concepts of occupational therapy. 4th ed. Philadelphia: Lippincott, Williams and Wilkins.
Schkade J, Schultz S (1992) Occupational adaptation: towards a holistic approach to contemporary practice. Part 1. American Journal of Occupational Therapy, 46, 828-37.
Smith N, Kielhfoner G, Watts J (1986) The relationship between volition, activity pattern and life satisfaction in the elderly. American Journal of Occupational Therapy, 40, 278-83.
Smyntek L, Barris R, Kiehofner G (1985) The Model of Human Occupation applied to psychosocially functional and dysfunctional adolescents. Occupational Therapy in Mental Health, 5(1), 21-40.
Spencer J, Hersch G, Eschenfelder V, Fournet J, Murray-Gerzik M (1999) Outcomes of protocol-based and adaptation-based occupational therapy interventions for low income elderly persons on a transitional unit. American Journal of Occupational Therapy, 53, 159-70.
SPSS (2006) Statistical Package for the Social Sciences, Version 15. Chicago, IL: SPSS Inc.
Townsend G (2008) Supporting people with multiple sclerosis in employment: a United Kingdom Survey of current practice and experience. British Journal of Occupational Therapy, 71(3), 103-11.
Whiteford G (2000) Occupational deprivation: global challenges in the new millennium. British Journal of Occupational Therapy, 63(5), 200-04.
Wood P (1996) Legitimatizing occupational therapy knowledge. American Journal of Occupational Therapy, 50(8), 626-34.
World Health Organisation (2001) ICF: International Classification of Functioning, Disability and Health. Geneva: WHO.
Mairead Cahill, (1) Deirdre Connolly (2) and Tadhg Stapleton (2)
(1) University of Limerick, Ireland.
(2) Trinity College Dublin, Ireland.
Corresponding author: Mairead Cahill, Regional Placement Facilitator, Department of Occupational Therapy, Health Sciences Building, University of Limerick, Castletroy, Limerick, Ireland. Email: email@example.com
Reference: Cahill M, Connolly D, Stapleton T (2010) Exploring occupational adaptation through the lives of women with multiple sclerosis. British Journal of Occupational Therapy, 73(3), 106-115.
[c] The College of Occupational Therapists Ltd.
Submitted: 15 August 2008.
Accepted: 17 November 2009.
Table 1. Participants' characteristics (pseudonyms are used) Anna Caroline Elaine Geraldine Type of MS Prog. MS RR MS RR MS Prog. MS Years since diagnosis 16 5 5 12 Age (years) 37 41 0.3 38 Employment status Part time Part time Full time Part time Hours of rest per day 8 4.5 5 4.5 (not including sleep) Marital status Single Married Single Single Joanne Lisa Nora Type of MS RR MS Prog. MS RR MS Years since diagnosis 0.2 5 0.5 Age (years) 0.46 38 42 Employment status Part time Part time Full time homemaker Hours of rest per day 5 8 1.5 (not including sleep) Marital status Married Single Married Key: Prog. MS = Progressive multiple sclerosis, RR MS = Relapsing remitting multiple sclerosis. Table 2. Participants' scores for each item of the Occupational Competence Rating Scale Items on Occupational Anna Geraldine Lisa Caroline Competence Rating Scale Prog. MS Prog. MS Prog. MS RR MS Maintains satisfying life 2 3 2 3 Fulfils role expectations 2 2 2 2 Works towards goals 2 2 2 3 Meets personal performance standards 1 2 2 3 Organises time for one's responsibilities 2 3 3 4 Participates in interests 2 2 2 3 Items on Occupational Elaine Nora Joanne Mean Standard Competence Rating Scale RR MS RR MS RR MS deviation Maintains satisfying life 2 3 3 2.57 0.53 Fulfils role expectations 2 2 2 2 0.53 Works towards goals 3 3 3 2.57 0.53 Meets personal performance standards 3 3 3 2.42 0.78 Organises time for one's responsibilities 3 3 3 3 0.57 Participates in interests 2 3 2 2 0.49 Key: 4 = Exceptional occupational functioning, 3 = Satisfactory occupational functioning, 2 = Some occupational dysfunction, 1 = Extreme occupational dysfunction. Prog. MS = Progressive multiple sclerosis, RR MS = Relapsing remitting multiple sclerosis. Table 3. Participants' scores for each item of the Occupational Identity Rating Scale Items on Occupational Anna Geraldine Lisa Caroline Identity Rating Scale Prog. MS Prog. MS Prog. MS RR MS Has personal goals and projects 2 4 3 4 Identifies a desired life 2 2 0.2 4 Expects success 2 2 0.3 4 Accepts responsibility 2 3 0.3 4 Appraises abilities and limitations 2 4 0.3 3 Has commitments and values 4 3 0.3 4 Recognises identity and obligations 3 3 0.3 4 Has interests 3 3 0.3 4 Items on Occupational Elaine Nora Joanne Mean Standard Identity Rating Scale RR MS RR MS RR MS deviation Has personal goals and projects 0.3 3 3 3.14 0.69 Identifies a desired life 0.2 3 3 2.57 0.78 Expects success 0.3 4 3 3.81 0.81 Accepts responsibility 0.3 4 4 3.28 0.75 Appraises abilities and limitations 0.3 3 4 3.14 0.69 Has commitments and values 0.2 3 4 3.28 0.75 Recognises identity and obligations 0.3 3 4 3.28 0.75 Has interests 0.3 3 3 3.14 0.37 Key: 4 = Exceptional occupational functioning, 3 = Satisfactory occupational functioning, 2 = Some occupational dysfunction, 1 = Extreme occupational dysfunction. Prog. MS = Progressive multiple sclerosis, RR MS = Relapsing remitting multiple sclerosis. Table 4. Average scores for the rating scales (n = 7) Scale Overall Overall Progressive Mean SD Mean Occupational Competence Rating Scale 2.4 0.58 2.11 Occupational Identity Rating Scale 3.1 1.41 2.79 Relapsing Relaping Scale Progressive remitting remitting SD Mean SD Occupational Competence Rating Scale 0.47 2.62 0.57 Occupational Identity Rating Scale 0.65 3.5 0.60
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