The impact, perceptions and needs of parents of children with epidermolysis bullosa

IF 1.2 Q2 MEDICINE, GENERAL & INTERNAL

South African Family Practice Pub Date : 2024-06-06 DOI:10.4102/safp.v66i1.5897

A. Chateau, David Blackbeard, C. Aldous, N. Dlova, Cassidy-Mae Shaw

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Abstract

Background: Epidermolysis 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.Method: This 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.Results: Seven 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.Conclusion: Parents 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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表皮松解症儿童家长的影响、看法和需求

背景：大疱性表皮松解症（EB）是一种罕见的、无法治愈的遗传性皮肤病，表现为水疱和皮肤脆弱。并发症可以是局部性的，也可以是全身性的，可以局限于皮肤，也可以对全身产生影响，导致死亡。照顾患有这种痛苦疾病的儿童会对父母和家庭的生活质量产生深远影响。在非洲资源有限的环境中，目前还没有关于父母照顾 EB 患儿生活经历的公开研究：这项定性研究采用了解释性现象分析法，旨在了解照顾脑损伤患儿的父母的生活经历。在 2022 年 5 月至 2023 年 10 月期间，对 13 名参与者进行了半结构化访谈。研究采用了古巴的可信性框架，以确保研究的严谨性：结果：确定了七个经验主题及相关子主题。这些主题分别是：（1）努力理解 EB；（2）心理体验；（3）生活责任；（4）感受支持的障碍；（5）不断变化的关系动态；（6）医护人员的经验；（7）父母的需求：结论：照顾 EB 儿童的家长面临着情感、身体、社会心理和经济方面的挑战。解决父母的需求和担忧将大大减轻他们的负担。在以家庭为中心的综合 EB 护理中，必须采用生物心理社会方法，同时考虑到文化背景：这是在非洲开展的第一项研究，重点关注父母照顾 EB 患儿的生活经历。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

South African Family Practice MEDICINE, GENERAL & INTERNAL-

CiteScore

1.50

自引率

20.00%

发文量

审稿时长

25 weeks

期刊介绍： South African Family Practice (SAFP) is a peer-reviewed scientific journal, which strives to provide primary care physicians and researchers with a broad range of scholarly work in the disciplines of Family Medicine, Primary Health Care, Rural Medicine, District Health and other related fields. SAFP publishes original research, clinical reviews, and pertinent commentary that advance the knowledge base of these disciplines. The content of SAFP is designed to reflect and support further development of the broad basis of these disciplines through original research and critical review of evidence in important clinical areas; as well as to provide practitioners with continuing professional development material.