Mental health support for informal carers of people living with Duchenne muscular dystrophy: Lived experience perspectives.

Abstract

Duchenne muscular dystrophy (DMD) is a genetic disorder that causes those living with the condition to require progressively increasing support needs. This support is often provided by informal carers, usually parents, and can have significant impacts on their well-being. Although some studies have noted positive outcomes as a consequence of caring for someone living with DMD, literature consistently finds poorer well-being outcomes in these carers. Research has supported the need for psychological interventions to be developed and evaluated for improving mental health in these carers. However, little is known about lived-experience perspectives on what qualities of such an intervention are likely to be acceptable to this group. Consequently, we explored lived-experience perspectives on the existing coping strategies and desired qualities of any psychological intervention designed to support mental health in carers of people living with DMD. We performed reflexive thematic analysis on transcripts of 17 semi-structured interviews with carers. Six themes regarding existing coping strategies and seven themes regarding desired qualities of psychological support interventions were identified in the data. Existing coping strategies included general lifestyle related factors, emotional and behavioural coping skills, positive perspective takings skills, and social connection. Desired intervention qualities included accessibility issues, accessing quality information, professional support around specific coping strategies and content, engaging families, and supporting carers from the point of diagnosis. We conclude that carers of people living with DMD require multifaceted psychological support strategies of which direct psychological support may be just one component. We argue that interventions that integrate our findings regarding lived-experience perspectives and existing evidence-based psychotherapy models may be best placed to effectively support mental health and well-being in these carers.