Understanding And Living With Multiple Sclerosis Fatigue

BRITISH JOURNAL OF OCCUPATIONAL THERAPY(2018)

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摘要
Introduction: Fatigue substantially affects the lives of many people with multiple sclerosis. This study aimed to further our understanding of the experience of living with multiple sclerosis fatigue by exploring how people became aware of and understood their multiple sclerosis fatigue and how they accommodate it in their daily lives.Method: The study used an existential approach to thematic analysis. Thirteen in-depth, semi-structured interviews with people who experienced multiple sclerosis fatigue were conducted and analysed.Results: Participants developed an understanding of multiple sclerosis fatigue through gaining awareness of its effect on their lives, seeking information themselves and being informed by health professionals. Participants described how they began to understand the effect of fatigue in their lives and make decisions about how to accommodate it. They discussed the challenges associated with helping others to understand their multiple sclerosis fatigue.Conclusion: Lay and expert explanations, the phenomenological notions of lived experience, self-identity and embodiment and stigma associated with invisible disability were useful concepts for understanding the results. Clinicians should consider these concepts when supporting people with multiple sclerosis fatigue to understand the effect of fatigue in their daily lives and use fatigue management strategies to make effective lifestyle changes to accommodate it.
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关键词
Multiple sclerosis (MS), fatigue, lived experience, phenomenology, health care, social stigma
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