{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,4]],"date-time":"2026-09-04T07:31:22Z","timestamp":1788507082633,"version":"build-2803163510"},"reference-count":31,"publisher":"AOSIS","issue":"1","license":[{"start":{"date-parts":[[2024,6,6]],"date-time":"2024-06-06T00:00:00Z","timestamp":1717632000000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"abstract":"<jats:p>Background:\u00a0Epidermolysis 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.\n\nMethod:\u00a0This 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\u2019s framework of trustworthiness was used to ensure rigour.\n\nResults:\u00a0Seven 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.\n\nConclusion:\u00a0Parents caring for children with EB face emotional, physical, psychosocial and financial challenges. Addressing parents\u2019 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.\n\nContribution:\u00a0This is the first study in Africa that focussed on the lived experiences of parents caring for a child with EB.<\/jats:p>","DOI":"10.4102\/safp.v66i1.5897","type":"journal-article","created":{"date-parts":[[2024,6,6]],"date-time":"2024-06-06T18:17:27Z","timestamp":1717697847000},"update-policy":"https:\/\/doi.org\/10.4102\/crossmark-policy","source":"Crossref","is-referenced-by-count":6,"title":["The impact, perceptions and needs of parents of children with epidermolysis bullosa"],"prefix":"10.4102","volume":"66","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9825-6191","authenticated-orcid":false,"given":"Antoinette V.","family":"Chateau","sequence":"first","affiliation":[{"name":"Greys Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5609-9343","authenticated-orcid":false,"given":"David","family":"Blackbeard","sequence":"additional","affiliation":[{"name":"Greys Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7199-9160","authenticated-orcid":false,"given":"Colleen","family":"Aldous","sequence":"additional","affiliation":[{"id":[{"id":"https:\/\/ror.org\/04qzfn040","id-type":"ROR","asserted-by":"publisher"}],"name":"University of KwaZulu-Natal"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2425-3905","authenticated-orcid":false,"given":"Ncoza","family":"Dlova","sequence":"additional","affiliation":[{"id":[{"id":"https:\/\/ror.org\/04qzfn040","id-type":"ROR","asserted-by":"publisher"}],"name":"University of KwaZulu-Natal"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4291-1641","authenticated-orcid":false,"given":"Cassidy-Mae","family":"Shaw","sequence":"additional","affiliation":[{"name":"Greys Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"2580","published-online":{"date-parts":[[2024,6,6]]},"reference":[{"key":"ref0","doi-asserted-by":"crossref","unstructured":"Has C, Liu L, Bolling MC, et al. 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J Am Acad Dermatol. 2009;61:367\u2013384; quiz 85. https:\/\/doi.org\/10.1016\/j.jaad.2009.03.052","DOI":"10.1016\/j.jaad.2009.03.052"},{"key":"ref4","doi-asserted-by":"crossref","unstructured":"Fine J-D, Mellerio J. Extracutaneous manifestations and complications of inherited epidermolysis bullosa. Part II. Other organs. J Am Acad Dermatol. 2009;61:387\u2013402; quiz 3. https:\/\/doi.org\/10.1016\/j.jaad.2009.03.053","DOI":"10.1016\/j.jaad.2009.03.053"},{"key":"ref5","unstructured":"David A, Alimohamed MZ, Modern G, et al. The plight of rare diseases in southern Africa: Health and social services policy recommendations. Qeios [Internet]. 2023 Jun 15;1."},{"key":"ref6","doi-asserted-by":"crossref","unstructured":"Kahraman S, \u00c7ift\u00e7i E, Timu\u00e7in A. Determination of caregiving burden of parents providing care to their children with epidermolysis bullosa. Egypt J Dermatol Venerol. 2017;37:1. https:\/\/doi.org\/10.4103\/1110-6530.207488","DOI":"10.4103\/1110-6530.207488"},{"key":"ref7","unstructured":"Ayibor, P. K. Treatment received by children who visit traditional healers (Doctoral dissertation). Faculty of Health Sciences, University of the Witwatersrand, 2008. https:\/\/hdl.handle.net\/10539\/7466"},{"key":"ref8","unstructured":"Smith JA, Flowers P, Larkin M, Interpretative phenomenological analysis: Theory, method and research, London: Sage; 2009."},{"key":"ref9","doi-asserted-by":"crossref","unstructured":"Chateau AV, Aldous C, Dlova N, Blackbeard D. \u2018It breaks my heart\u2019: Healthcare practitioners\u2019 caring for families with epidermolysis bullosa. Health SA. 2023;28:2355. https:\/\/doi.org\/10.4102\/hsag.v28i0.2355","DOI":"10.4102\/hsag.v28i0.2355"},{"key":"ref10","doi-asserted-by":"crossref","unstructured":"Chateau AV, Gqaleni N, Aldous C, Dlova N, Blackbeard D. 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Washington, DC: American Psychological Association; 2022.","DOI":"10.1037\/0000259-000"},{"key":"ref14","doi-asserted-by":"crossref","unstructured":"Lincoln YS, Guba EG. But is it rigorous? Trustworthiness and authenticity in naturalistic evaluation. N Direct Prog Eval. 1986;1986(30):73\u201384. https:\/\/doi.org\/10.1002\/ev.1427","DOI":"10.1002\/ev.1427"},{"key":"ref15","doi-asserted-by":"crossref","unstructured":"Shenton A. Strategies for ensuring trustworthiness in qualitative research projects. Educ Inform. 2004;22:63\u201375. https:\/\/doi.org\/10.3233\/EFI-2004-22201","DOI":"10.3233\/EFI-2004-22201"},{"key":"ref16","doi-asserted-by":"crossref","unstructured":"Martin K, Geuens S, Asche JK, et al. Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: Evidence based guidelines. Orphanet J Rare Dis. 2019;14(1):133. https:\/\/doi.org\/10.1186\/s13023-019-1086-5","DOI":"10.1186\/s13023-019-1086-5"},{"key":"ref17","doi-asserted-by":"crossref","unstructured":"Chogani F, Parvizi MM, Murrell DF, Handjani F. Assessing the quality of life in the families of patients with epidermolysis bullosa: The mothers as main caregivers. Int J Womens Dermatol. 2021;7(5Part B):721\u2013726. https:\/\/doi.org\/10.1016\/j.ijwd.2021.08.007","DOI":"10.1016\/j.ijwd.2021.08.007"},{"key":"ref18","doi-asserted-by":"crossref","unstructured":"Wu YH, Sun FK, Lee PY. Family caregivers\u2019 lived experiences of caring for epidermolysis bullosa patients: A phenomenological study. J Clin Nurs. 2020;29(9\u201310):1552\u20131560. https:\/\/doi.org\/10.1111\/jocn.15209","DOI":"10.1111\/jocn.15209"},{"key":"ref19","unstructured":"Antonio da Silva R, da Silva dos Santos RE, da Silva Alencastro LC, Tomazelli Ferreira R. Coping strategies in the experience of motherhood against epidermolysis bullosa. Estrategias Enfrentamiento Vivencia Maternidad Frente Epiderm\u00f3lisis Bullosa. 2023;37:1\u201310."},{"key":"ref20","doi-asserted-by":"crossref","unstructured":"Cardinali P, Migliorini L, Rania N. The caregiving experiences of fathers and mothers of children with rare diseases in Italy: Challenges and social support perceptions. Front Psychol. 2019;10:1780. https:\/\/doi.org\/10.3389\/fpsyg.2019.01780","DOI":"10.3389\/fpsyg.2019.01780"},{"key":"ref21","doi-asserted-by":"crossref","unstructured":"Bruckner AL, Losow M, Wisk J, et al. The challenges of living with and managing epidermolysis bullosa: Insights from patients and caregivers. Orphanet J Rare Dis. 2020;15(1):1. https:\/\/doi.org\/10.1186\/s13023-019-1279-y","DOI":"10.1186\/s13023-019-1279-y"},{"key":"ref22","doi-asserted-by":"crossref","unstructured":"Kearney S, Donohoe A, McAuliffe E. Living with epidermolysis bullosa: Daily challenges and health-care needs. Health Expect. 2020;23(2):368\u2013376. https:\/\/doi.org\/10.1111\/hex.13006","DOI":"10.1111\/hex.13006"},{"key":"ref23","doi-asserted-by":"crossref","unstructured":"Mauritz P, Jonkman MF, Visser SS, Finkenauer C, Duipmans JC, Hagedoorn M. Impact of painful wound care in epidermolysis bullosa during childhood: An interview study with adult patients and parents. Acta Dermato Venereol. 2019;99(9):783\u2013788. https:\/\/doi.org\/10.2340\/00015555-3179","DOI":"10.2340\/00015555-3179"},{"key":"ref24","doi-asserted-by":"crossref","unstructured":"Van Scheppingen C, Lettinga AT, Duipmans JC, Maathuis CG, Jonkman MF. Main problems experienced by children with epidermolysis bullosa: A qualitative study with semi-structured interviews. Acta Dermato Venereol. 2008;88(2):143\u2013150. https:\/\/doi.org\/10.2340\/00015555-0376","DOI":"10.2340\/00015555-0376"},{"key":"ref25","doi-asserted-by":"crossref","unstructured":"Yuen WY, Duipmans JC, Jonkman MF. The needs of parents with children suffering from lethal epidermolysis bullosa. Br J Dermatol. 2012;167(3):613\u2013618. https:\/\/doi.org\/10.1111\/j.1365-2133.2012.10993.x","DOI":"10.1111\/j.1365-2133.2012.10993.x"},{"key":"ref26","doi-asserted-by":"crossref","unstructured":"Dufresne H, Hadj-Rabia S, Bodemer C. Impact of a rare chronic genodermatosis on family daily life: The example of epidermolysis bullosa. Br J Dermatol. 2018;179(5):1177\u20131178. https:\/\/doi.org\/10.1111\/bjd.16710","DOI":"10.1111\/bjd.16710"},{"key":"ref27","unstructured":"Shizha E, Charema J. Health and wellness in Southern Africa: Incorporating indigenous and western healing practices. International Journal of Psychology and Counselling. 2011;3(9):167\u201375."},{"key":"ref28","doi-asserted-by":"crossref","unstructured":"Fine JD, Johnson LB, Weiner M, Suchindran C. Impact of inherited epidermolysis bullosa on parental interpersonal relationships, marital status and family size. Br J Dermatol. 2005;152(5):1009\u20131014. https:\/\/doi.org\/10.1111\/j.1365-2133.2004.06339.x","DOI":"10.1111\/j.1365-2133.2004.06339.x"},{"key":"ref29","doi-asserted-by":"crossref","unstructured":"Stevens LJ. Access to wound dressings for patients living with epidermolysis bullosa \u2013 An Australian perspective. Int Wound J. 2014;11(5):505\u2013508. https:\/\/doi.org\/10.1111\/j.1742-481X.2012.01116.x","DOI":"10.1111\/j.1742-481X.2012.01116.x"},{"key":"ref30","doi-asserted-by":"crossref","unstructured":"Lewis CL, Wickstrom GC, Kolar MM, et al. Patient preferences for care by general internists and specialists in the ambulatory setting. 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