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.
METHODS: 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.
CONCLUSIONS: 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.
METHODS: 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.
CONCLUSIONS: 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.
摘要：
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，表现为起泡和皮肤脆弱。并发症可以是局部的或普遍的，仅限于皮肤或有全身效应导致死亡。照顾患有这种痛苦状况的孩子会对父母和家庭的生活质量产生深远的影响。目前尚无关于在非洲资源有限的环境中照顾EB患儿的父母的生活经验的研究。
方法：这项定性研究使用解释性现象学分析，目的是了解父母照顾EB儿童的生活经历。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。使用Guba的可信赖性框架来确保严格性。
结果：确定了七个具有相关子主题的经验主题。主题是(1)努力理解EB，(2)心理体验,（3）带着责任生活，(4)感觉受到支持的障碍，(5)变化的关系动力学，（6）医疗保健专业人员的经验和（7）父母的需求。
结论：照顾EB患儿的父母情绪激动，物理，社会心理和财务挑战。解决父母的需求和担忧将大大有助于减轻这种负担。具有文化背景意识的生物心理社会方法对于以家庭为中心的整体EB护理至关重要。贡献：这是非洲的第一项研究，重点是父母照顾EB患儿的生活经历。
方法：这项定性研究使用解释性现象学分析，目的是了解父母照顾EB儿童的生活经历。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。使用Guba的可信赖性框架来确保严格性。
结果：确定了七个具有相关子主题的经验主题。主题是(1)努力理解EB，(2)心理体验,（3）带着责任生活，(4)感觉受到支持的障碍，(5)变化的关系动力学，（6）医疗保健专业人员的经验和（7）父母的需求。
结论：照顾EB患儿的父母情绪激动，物理，社会心理和财务挑战。解决父母的需求和担忧将大大有助于减轻这种负担。具有文化背景意识的生物心理社会方法对于以家庭为中心的整体EB护理至关重要。贡献：这是非洲的第一项研究，重点是父母照顾EB患儿的生活经历。
