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

Elisabeth Daae; Kristin Billaud Feragen; Terje Naerland; Charlotte von der Lippe

doi:10.1186/s13023-024-03502-5

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

Orphanet J Rare Dis. 2024 Dec 27;19(1):492. doi: 10.1186/s13023-024-03502-5.

Authors

Elisabeth Daae^{1

2}, Kristin Billaud Feragen³, Terje Naerland^{4

5}, Charlotte von der Lippe⁶

Affiliations

¹ Center for Rare Disorders, Oslo University Hospital HF, Rikshospitalet, Nydalen, Oslo, 4950, 0424, PB, Norway. elidaa@ous-hf.no.
² Institute of Clinical Medicine, University of Oslo, Oslo, Norway. elidaa@ous-hf.no.
³ Center for Rare Disorders, Oslo University Hospital HF, Rikshospitalet, Nydalen, Oslo, 4950, 0424, PB, Norway.
⁴ KG Jebsen Center for Neurodevelopmental Disorders, Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
⁵ Norwegian Centre of Expertise for Neurodevelopmental Disorders and Hypersomnias, Oslo University Hospital, Oslo, Norway.
⁶ Department of Medical Genetics, Telemark Hospital Trust, Skien, Norway.

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 caring for a child with EB that may be under-recognized by healthcare professionals (HCPs) and allied caretakers. Examples of this was extensive home care, learning skin care through trial-and-error, tension between illness-demands and the child's psychological needs, and parents being gatekeepers of their child's well-being.

Conclusions: Caring for a child with EB may imply practical and emotionally demanding tasks for the parents, and possible unmet healthcare needs. It is important that HCPs recognize and understand the potential burden of extensive home care these parents experience as part of providing for their child with EB and the family.

Keywords: Epidermolysis Bullosa; Genodermatosis; Parents, skin care; Qualitative.

MeSH terms

Adult
Caregivers / psychology
Child
Child, Preschool
Epidermolysis Bullosa* / psychology
Epidermolysis Bullosa* / therapy
Female
Humans
Male
Parents* / psychology