Multiple sclerosis carers’ views on their quality of life: an interpretative phenomenological analysis

Abstract

Background: Existing evidence suggests that carers of individuals with Multiple Sclerosis (MS) experience a number of unique obstacles within their caregiving role due to the complex and unpredictable nature of the disease. There is limited research explicitly investigating the quality of life (QoL) of MS carers from a qualitative perspective. Therefore, Interpretative Phenomenological Analysis (IPA) was utilised to conduct in-depth online interviews with MS carers to explore QoL issues in an MS caregiving context. Methods: Online asynchronous semi-structured interviews were conducted with six MS informal carers who were recruited using a purposive sampling method. The interviews focused on an exploration of disease-specific aspects of QoL that were deemed important to MS carers. Transcripts were analysed using IPA. Findings: Three super-ordinate themes emerged from the analysis: Difficulties of MS caregiving; dissatisfaction with life; and the consequences of caregiving. Discussion: These findings illustrate that the QoL of MS carers is substantially compromised, and highlight the need for supportive strategies for this population of carers. Focusing on caregiver gains could particularly complement and support psychosocial interventions as our findings suggested there were also some positive aspects of caregiving that helped enhance QoL.