Health care professionals’ experiences of caring for children with severe epidermolysis bullosa

Epidermolysis bullosa (EB) comprises a group of genetically and clinically heterogeneous disorders characterized by skin fragility and blistering. It is currently incurable, and care is complex because of the rarity of the disease. Epidermolysis bullosa has a major impact on the lives of people living with it and on their families. In this study, we aimed to explore health care professionals' (HCPs) experiences of treating and following up on children with EB and their families. Nine HCPs from several health care disciplines participated in semi-structured interviews, which were analyzed through reflexive thematic analysis. Two main themes were identified: caring as an act of balance and facilitating collaboration. All participants experienced the following as challenging: (a) balancing between professional decisions and the provision of guidance to parents and (b) dealing with their own emotions. More systematic research is needed on the psychological impact of caring for children with EB and their families on HCPs.