ArticleSouth African family practice : official journal of the South African Academy of Family Practice/Primary Care2024
The impact, perceptions and needs of parents of children with epidermolysis bullosa.
Article in South African family practice : official journal of the South African Academy of Family Practice/Primary Care, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 4 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
4 citing papers in PubMed.
- Mesenchymal stromal cell infusions of umbilical cord-derived mesenchymal stromal cells in children with Recessive Dystrophic Epidermolysis Bullosa (MissionEB): a qualitative sub study of a randomised, double-blind, placebo controlled, crossover, phase 3 trial.Orphanet journal of rare diseases · 2026Trial
- The Spectrum of Epidermolysis Bullosa in KwaZulu-Natal, South Africa.International journal of dermatology · 2025Observational
- Consensus statements for the biopsychosocial care of patients with epidermolysis bullosa South Africa: Part 2.Health SA = SA Gesondheid · 2025Article
- Consensus statements for the transdisciplinary care of patients with epidermolysis bullosa in South Africa: Part 1.Health SA = SA Gesondheid · 2025Article
Corrections and comments
- Erratum issued
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundEpidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a child with this painful condition can have a profound effect on the quality of life of parents and the family. There is currently no published research on the lived experience of parents caring for a child with EB in a resource-limited environment in Africa.
methodThis qualitative research used interpretative phenomenological analysis with the aim of understanding the lived experiences of parents caring for children with EB. Semi-structured interviews were conducted with 13 participants between May 2022 and October 2023. Guba's framework of trustworthiness was used to ensure rigour.
resultsSeven experiential themes with associated sub-themes were identified. The themes were (1) grappling with understanding EB, (2) the psychological experience, (3) living with the responsibility, (4) barriers to feeling supported, (5) changing relational dynamics, (6) experience of healthcare professionals and (7) parental needs.
conclusionParents caring for children with EB face emotional, physical, psychosocial and financial challenges. Addressing parents' needs and concerns will go a long way in decreasing this burden. A biopsychosocial approach with an awareness of cultural context is essential for family-centred holistic EB care.Contribution: This is the first study in Africa that focussed on the lived experiences of parents caring for a child with EB.
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Registered trials
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