What can we learn from the personal insights of individuals living and coping with Multiple Sclerosis?

KS Malcomson, Andrea Lowe-Strong, Lynn Dunwoody

Research output: Contribution to journalArticle

44 Citations (Scopus)

Abstract

Purpose. The aim of this qualitative study was to explore the personal accounts of individuals with Multiple Sclerosis (MS). Hence the study presents individuals experiences of living with MS to date and the effective self-management strategies employed to cope in day-to-day life. Methods. Thematic analysis was used to explore the personal narratives of thirteen individuals with MS in two focus group discussions. Results. Participants in both groups identified similar themes related to the experiences of living and coping with MS. These were: Learning something was wrong (before diagnosis); getting a name (diagnosis); lack of professional support; unchanging family relationships, adjustments to employment circumstances and social life; challenges; successful coping via proactivity, perspective and control (self-management techniques); advice for others, and recommendations as to how services could be improved and developed. Conclusion. The most salient finding is that there is a need for a formal approach to the management of psychosocial problems and challenges associated with MS. This will require both users and health professionals working together to further the development of clinical guidelines and services for this population.
LanguageEnglish
Pages662-674
JournalDISABILITY AND REHABILITATION
Volume30
Issue number9
DOIs
Publication statusPublished - 2008

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Multiple Sclerosis
Self Care
Personal Narratives
Social Adjustment
Family Relations
Focus Groups
Names
Learning
Guidelines
Health
Population

Cite this

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title = "What can we learn from the personal insights of individuals living and coping with Multiple Sclerosis?",
abstract = "Purpose. The aim of this qualitative study was to explore the personal accounts of individuals with Multiple Sclerosis (MS). Hence the study presents individuals experiences of living with MS to date and the effective self-management strategies employed to cope in day-to-day life. Methods. Thematic analysis was used to explore the personal narratives of thirteen individuals with MS in two focus group discussions. Results. Participants in both groups identified similar themes related to the experiences of living and coping with MS. These were: Learning something was wrong (before diagnosis); getting a name (diagnosis); lack of professional support; unchanging family relationships, adjustments to employment circumstances and social life; challenges; successful coping via proactivity, perspective and control (self-management techniques); advice for others, and recommendations as to how services could be improved and developed. Conclusion. The most salient finding is that there is a need for a formal approach to the management of psychosocial problems and challenges associated with MS. This will require both users and health professionals working together to further the development of clinical guidelines and services for this population.",
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What can we learn from the personal insights of individuals living and coping with Multiple Sclerosis? / Malcomson, KS; Lowe-Strong, Andrea; Dunwoody, Lynn.

In: DISABILITY AND REHABILITATION, Vol. 30, No. 9, 2008, p. 662-674.

Research output: Contribution to journalArticle

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AB - Purpose. The aim of this qualitative study was to explore the personal accounts of individuals with Multiple Sclerosis (MS). Hence the study presents individuals experiences of living with MS to date and the effective self-management strategies employed to cope in day-to-day life. Methods. Thematic analysis was used to explore the personal narratives of thirteen individuals with MS in two focus group discussions. Results. Participants in both groups identified similar themes related to the experiences of living and coping with MS. These were: Learning something was wrong (before diagnosis); getting a name (diagnosis); lack of professional support; unchanging family relationships, adjustments to employment circumstances and social life; challenges; successful coping via proactivity, perspective and control (self-management techniques); advice for others, and recommendations as to how services could be improved and developed. Conclusion. The most salient finding is that there is a need for a formal approach to the management of psychosocial problems and challenges associated with MS. This will require both users and health professionals working together to further the development of clinical guidelines and services for this population.

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