When care hurts: parents' experiences of caring for a child with epidermolysis bullosa.

ABSTRACT:

Background

Epidermolysis bullosa (EB) comprises a group of genetically and clinically heterogeneous diseases characterized by skin fragility and blistering. EB is incurable, and treatment consists of preventing blisters in addition to painful and time consuming skin care, often performed by the parents, in addition to monitoring other symptoms in cases of severe EB.

Results

The purpose of this study was to explore parental experiences of caring for a child with EB. Data were collected from semi-structured interviews, and analyzed through reflexive thematic analysis. The sample consisted of 15 parents. Our analysis revealed three main themes: Becoming a self-taught provider of home-based skin care; Balancing roles; and Ahead of every challenge. The results indicate aspects of

SUBMITTER: Daae E 

PROVIDER: S-EPMC11681652 | biostudies-literature | 2024 Dec

REPOSITORIES: biostudies-literature