ArticleHealth SA = SA Gesondheid2023
'It breaks my heart': Healthcare practitioners' caring for families with epidermolysis bullosa.
Article in Health SA = SA Gesondheid, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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Who cites it
7 citing papers in PubMed, 6 citations in OpenAlex.
- The lived experience and supportive care needs of Australian parents caring for children with Epidermolysis Bullosa: a qualitative descriptive analysis.Orphanet journal of rare diseases · 2025Article
- "It's like nursing a butterfly-so delicate, difficult, and unpredictable" - challenges of nurses in caring for patients with epidermolysis bullosa: a qualitative study.Orphanet journal of rare diseases · 2025Article
- Parental Caregiving Experiences in Epidermolysis Bullosa: A Phenomenological Study.International journal of community based nursing and midwifery · 2025Article
- Consensus statements for the biopsychosocial care of patients with epidermolysis bullosa South Africa: Part 2.Health SA = SA Gesondheid · 2025Article
- The impact, perceptions and needs of parents of children with epidermolysis bullosa.South African family practice : official journal of the South African Academy of Family Practice/Primary Care · 2024Article
- Lived experiences of patients with epidermolysis bullosa: A rare genetic skin disease.Health SA = SA Gesondheid · 2024Article
- Health care professionals' experiences of caring for children with severe epidermolysis bullosa.Health psychology openArticle
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: Epidermolysis bullosa (EB) is a painful genodermatosis presenting with skin fragility and blisters. There is no cure; the prognosis is guarded and depends on the subtype of the disease. Managing these patients can be emotionally challenging for healthcare practitioners. Aim: To determine the perceptions, impact, and needs of healthcare practitioners (HCP) caring for patients and their families with EB. Setting: Nelson Mandela School of Medicine, Durban and Grey's Hospital, Pietermaritzburg, KwaZulu-Natal. Methods: The study was guided by interpretative phenomenological analysis. Individual in-depth interviews were conducted with 10 healthcare practitioners. Guba's trustworthiness framework was used to ensure rigour. Results: Six global themes were identified, each related primarily to the perceptions, impact, and needs of healthcare practitioners. The experiences and perceptions of healthcare practitioners were that caring for patients with an incurable disease such as EB could negatively impact healthcare practitioners. There were divergent views among the disciplines of HCPs regarding the extent of care in a resource-limited environment. This resulted in negative emotions, ethical concerns, and a need for continued medical education and the application of coping strategies. Healthcare practitioners observed that patients and their families were vulnerable, requiring comprehensive biopsychosocial care. Conclusion: Healthcare practitioners should be aware of their emotional challenges, seek support where necessary, and use effective coping strategies and self-care. Contribution: The concerns and needs of healthcare practitioners are highlighted and interventional strategies to assist healthcare practitioners are suggested which will ultimately improve patient care.
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