When care hurts: parents’ experiences of caring for a child with epidermolysis bullosa
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.
Authors
- Charlotte von der Lippe (ORCID: https://orcid.org/0000-0003-3176-0160)
- Kristin Billaud Feragen (ORCID: https://orcid.org/0000-0002-0329-5671)
- Terje Nærland (ORCID: https://orcid.org/0000-0001-9175-4286)
- Elisabeth Daae (ORCID: https://orcid.org/0000-0002-2005-284X)
Institutions
- Oslo University Hospital (NO)
- University of Oslo (NO)
- Telemark Hospital (NO)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2024-12-27
- DOI
- https://doi.org/10.1186/s13023-024-03502-5
- Citations
- 3
- Primary Topic
- Skin and Cellular Biology Research
- Type
- article
- Field-Weighted Citation Impact
- 0.98
Funders
- Universitetet i Oslo