Pilot study of participating in a fatigue management programme for clients with multiple sclerosis.
ABSTRACT The purpose of this study was to examine the experience of participating in a community-based fatigue management programme for people with multiple sclerosis (MS).
Eight people with MS who participated in an 8-week community-based fatigue management programme were interviewed using a semi-structured, open-ended interview protocol. Data were analysed using constant comparative analysis informed by a phenomenological perspective.
Participants experienced ownership, active participation and empowerment. Participants' fatigue was legitimised and validated, and participants described a shared experience and shared voice. Outcomes identified by participants included: lifestyle and occupational changes, altered thinking about fatigue and the development of social supports.
Participants' experience of the community-based fatigue management programme was described in positive terms with unanticipated benefits and outcomes described.
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ABSTRACT: Abstract Purpose: To explore how persons with multiple sclerosis (MS) experience participating in inpatient rehabilitation, and how it might provide psychosocial benefits. Method: Ten participants with MS who had completed inpatient rehabilitation in Norway and on Tenerife participated in two focus groups. A semi-structured interview protocol was used. Data were analyzed using qualitative content analysis informed by a phenomenological perspective. Results: During inpatient rehabilitation participants shared experiences with symptoms of the disease, of social stigma and coping strategies. They communicated experiences of living with MS and they created a sense of community, they became "colleagues". This experience gave rise to mutual recognition of ability, impairment, self and identity, and thus facilitated personal empowerment to counteract social stigma through adequate coping strategies. Conclusion: Participating in inpatient rehabilitation gave people with MS the possibility to exchange information and communicate strategies for coping with the disease-related conditions and societal demands. They established social relations recognizing each other's resources. Participants felt equipped to make decisions and to mobilize individual and collective resources. Recognition of the individual with both ability and impairment can be a key to empowerment. Implications for Rehabilitation In multiple sclerosis (MS), the clinical symptoms and the unpredictability of the disease may have consequences for how patients relate to self and to others, and hence how they perform socially. Stigmatization is commonly experienced among people with MS. The recognition experienced from peers create a sense of community. We recommend health care professionals to acknowledge the importance of peer support for self, identity and empowerment in MS.Disability and Rehabilitation 07/2013; · 1.54 Impact Factor
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ABSTRACT: Abstract Objective: To identify and summarize available research literature about rehabilitation interventions for multiple sclerosis (MS) fatigue management. Methods: Database searches (PubMed, EMBASE, CINAHL and PsychINFO) were conducted in October 2011 and last updated in July 2013. To be included, studies must have been published in a peer-reviewed scientific journal, written in English and included an intervention to manage MS fatigue. Effect size (ES) were calculated for the quantitative studies to estimate intervention effects, and major themes were summarized for the qualitative studies. Results: Thirty-eight studies were included in this review. A variety of exercise and behavior change interventions were prescribed to adults with MS. The two most common interventions were progressive resistive training and fatigue management programs. Three exercise intervention studies and nine behavior change intervention studies with quantitative data presented significant ES. Four studies with qualitative data supported the positive impact of certain exercise and behavior change interventions. Conclusions: This review identified a variety of exercise and behavior change interventions for MS fatigue management. While the findings may provide helpful information to inform practice, future researchers need to develop and evaluate knowledge translation strategies to facilitate the application of this evidence to daily practice to advance MS rehabilitation care. Implications for Rehabilitation Both exercise and behavior change interventions demonstrate some degree of effectiveness for managing MS fatigue. Effect sizes for exercise and behavior change interventions are similar, although the populations examined are different. Overall, evidence for exercise focuses on people who are less disabled, while evidence for behavior change interventions includes a broader population. Future researchers need to develop and evaluate knowledge translation strategies that facilitate application of evidence in daily practice in order to advance MS rehabilitation.Disability and rehabilitation. 07/2014;
- Mental health special interest section quarterly / American Occupational Therapy Association. 01/2012; 35(2):1-4.