Understanding the Experiences and Needs of Parents With Children With Epidermolysis Bullosa. A Qualitative Study to Inform the Development of a Self-help Toolkit

BACKGROUND: Epidermolysis Bullosa (EB) is a rare genetic condition characterised by skin fragility and blistering. There is no cure for EB and management includes wound care, dressing changes, and medications for pain relief and chronic itch. Parents of children with EB have a significant additional caregiving role, including provision of physical care, and this alongside other aspects of the condition can put parents at risk of psychological stress and distress. OBJECTIVES: The primary aim of this study was to understand the support needs of parent caregivers of children with EB. A secondary aim was to consider how these needs might be addressed with the development of a self-help toolkit. METHODS: Thematic analysis using semi-structured interviews conducted with both parents of children with EB and expert healthcare professionals (HCPs). RESULTS: Parents described experiencing a range of complex emotions, including sadness, worry and uncertainty about the future, and guilt. The interviews with HCPs supported the parental accounts and highlighted the need for a tailored psychosocial self-help intervention. The findings suggest that a self-help intervention would need to acknowledge the wider family impact alongside recognition that considerable psychosocial impact is associated with the provision of continuing care. CONCLUSIONS: Future psychosocial interventions must be designed around the needs of families, with a systemic approach to include siblings and the wider family unit. Approaches drawing on acceptance and commitment therapy might also be particularly relevant to this population but only if adapted to consider systemic issues.