Our disease: a qualitative meta-synthesis of the experiences of spousal/partner caregivers of people with multiple sclerosis

Abstract

Purpose: To provide a unique and conceptually comprehensive account of the lived experiences of caregiving spouses/partners of people with multiple sclerosis, which can be used to better enable health professionals to provide appropriate support services.

Method: A systematic review of qualitative studies reporting the experiences of caregiving spouses/partners was conducted. Relevant articles were identified and analysed using a meta-ethnographic synthesis.

Results: Twenty studies met eligibility criteria, of which 18 were included in the final meta-synthesis. Six major concepts were identified: Acceptance and Appreciation, Commitment, Becoming the Carer, Living with Loss, Shifting Sands and Setbacks with Services. A model of carer experience is presented as a line of argument to synthesise the findings. Suggestions are made regarding the types of supportive interventions that might be effective for spousal carers.

Conclusion: The findings increase our understanding about the experiences of partners caring for people with multiple sclerosis. Spousal carers can adapt to the challenges associated with change and loss, and have the potential to develop appreciation, acceptance and hope. Services need to be sensitive to the fluctuating demands placed upon carers and be flexible in their support.

Keywords: couples; informal carers; meta-ethnography; meta-synthesis; multiple sclerosis.