The lived experience and supportive care needs of Australian parents caring for children with Epidermolysis Bullosa: a qualitative descriptive analysis
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.
Authors
- Colin J. Ireland (ORCID: https://orcid.org/0000-0002-7983-0255)
- Zlatko Kopecki (ORCID: https://orcid.org/0000-0002-8072-4222)
- Lemuel J. Pelentsov (ORCID: https://orcid.org/0000-0001-8108-491X)
- Hayley Ruf
Institutions
- University of South Australia (AU)
- Dystrophic Epidermolysis Bullosa Research Association of America (US)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-11-29
- DOI
- https://doi.org/10.1186/s13023-025-04159-4
- Primary Topic
- Skin and Cellular Biology Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00