‘It breaks my heart’: Healthcare practitioners’ caring for families with epidermolysis bullosa

Health SA Gesondheid

Field Value
Title ‘It breaks my heart’: Healthcare practitioners’ caring for families with epidermolysis bullosa
Creator Chateau, Antoinette V. Aldous, Colleen Dlova, Ncoza Blackbeard, David
Subject — epidermolysis bullosa; genetic skin disease; rare disease; healthcare practitioners; nurses; doctors; impact; perceptions; needs; interpretive phenomenological analysis
Description 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.
Publisher AOSIS Publishing
Contributor Partially funded by the PI and partially funded by the University of KwaZulu-Natal
Date 2023-10-24
Type info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion — Qualitative research
Format text/html application/epub+zip text/xml application/pdf
Identifier 10.4102/hsag.v28i0.2355
Source Health SA Gesondheid; Vol 28 (2023); 12 pages 2071-9736 1025-9848
Language eng
The following web links (URLs) may trigger a file download or direct you to an alternative webpage to gain access to a publication file format of the published article:

https://hsag.co.za/index.php/hsag/article/view/2355/html https://hsag.co.za/index.php/hsag/article/view/2355/epub https://hsag.co.za/index.php/hsag/article/view/2355/xml https://hsag.co.za/index.php/hsag/article/view/2355/pdf
Coverage KwaZulu-Natal; South Africa 2022 —
Rights Copyright (c) 2023 Antoinette V. Chateau, Colleen Aldous, Ncoza Dlova, David Blackbeard https://creativecommons.org/licenses/by/4.0