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.

Keywords:

• Multiple sclerosis
• psychosocial
• focus group
• quality of life
• lived experience
• coping