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

Title

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

Creator

Chateau AV; Blackbeard D; Aldous C; Dlova N; Shaw CM

Publisher

South African Family Practice

Date

2024

Subject

quality of life; Internet; epistemology; ethnography; semi structured interview; experience; perception; responsibility; communication skill; personal experience; health care access; health care cost; systematic review; health care system; medical practice; human; article; child; interview; awareness; palliative therapy; qualitative research; epidermolysis bullosa; social aspect; health insurance; pregnant woman; health care disparity; yoga

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

September List 2024

Collection

Citation

Chateau AV; Blackbeard D; Aldous C; Dlova N; Shaw CM, “The impact, perceptions and needs of parents of children with epidermolysis bullosa,” Pediatric Palliative Care Library, accessed November 2, 2024, https://pedpalascnetlibrary.omeka.net/items/show/19720.