The lived experience and supportive care needs of Australian parents caring for children with Epidermolysis Bullosa: a qualitative descriptive analysis.

BACKGROUND: Inherited epidermolysis bullosa (EB) is a rare, incurable genodermatosis characterised with recurrent skin blistering and mucosal fragility. Wound care and nursing are critical to everyday lives of children living with EB, while the profound effect of caring for a child with a painful genetic condition leaves a significant effect on quality of life of parents and the family. This study aimed to better understand the lived experiences and supportive care needs of parents of children with EB in Australia. METHODS: Interpretative phenomenological analysis was used, and semi structured focus groups interviews were conducted with Australian parents of children with EB. This included 18 parents of children with EB simplex (EBS), 9 parents of children with Junctional EB (JEB) and 16 parents of children with Dystrophic EB (DEB). The data were thematically analysed, all participants are residents of Australia and therefore reflect the services in this geographical location. RESULTS: Six overarching themes included: practical needs, emotional needs, informational needs, psychological needs, social needs and physical needs. CONCLUSIONS: Parents caring for a child with EB in Australia face numerous needs and challenges regardless of EB severity which highlights the need for provision of better more comprehensive services to deliver family focused holistic EB care that can alleviate some of the burden of EB and improve the quality of life for families and individuals living with EB.