Original Research

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

Antoinette V. Chateau, Colleen Aldous, Ncoza Dlova, David Blackbeard
Health SA Gesondheid | Vol 28 | a2355 | DOI: https://doi.org/10.4102/hsag.v28i0.2355 | © 2023 Antoinette V. Chateau, Colleen Aldous, Ncoza Dlova, David Blackbeard | This work is licensed under CC Attribution 4.0
Submitted: 08 February 2023 | Published: 24 October 2023

About the author(s)

Antoinette V. Chateau, Department of Dermatology, Grey’s Hospital, Pietermaritzburg, South Africa; and, Department of Dermatology, Faculty of Health Science, University of KwaZulu-Natal, Durban, South Africa
Colleen Aldous, School of Clinical Medicine, Faculty of Health Science, University of KwaZulu-Natal, Durban, South Africa
Ncoza Dlova, Department of Dermatology, Faculty of Health Science, University of KwaZulu-Natal, Durban, South Africa
David Blackbeard, Department of Psychology, Grey’s Hospital, Pietermaritzburg, South Africa; and, Department of Psychiatry, Faculty of Health Science, University of KwaZulu-Natal, Durban, South Africa

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.


Keywords

epidermolysis bullosa; genetic skin disease; rare disease; healthcare practitioners; nurses; doctors; impact; perceptions; needs; interpretive phenomenological analysis

Sustainable Development Goal

Goal 3: Good health and well-being

Metrics

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Total article views: 877

 

Crossref Citations

1. The impact, perceptions and needs of parents of children with epidermolysis bullosa
Antoinette V. Chateau, David Blackbeard, Colleen Aldous, Ncoza Dlova, Cassidy-Mae Shaw
South African Family Practice  vol: 66  issue: 1  year: 2024  
doi: 10.4102/safp.v66i1.5897