{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,1]],"date-time":"2026-04-01T20:06:23Z","timestamp":1775073983327,"version":"3.50.1"},"reference-count":46,"publisher":"Mark Allen Group","issue":"11","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Wound Care"],"published-print":{"date-parts":[[2012,11]]},"abstract":"<jats:sec><jats:title>\u2022 Objective:<\/jats:title><jats:p> To explore the lived experience of individuals with chronic wounds associated with dystrophic and junctional epidermolysis bullosa (EB), to improve understanding and, therefore, enhance the care provided to this group of patients by acquiring in depth data on the psychosocial issues that affect them. <\/jats:p><\/jats:sec><jats:sec><jats:title>\u2022 Method:<\/jats:title><jats:p> A phenomenological study using interpretive phenomenological analysis was employed. A purposive sampling method was used with six individuals replying to postal invitation to participate. <\/jats:p><\/jats:sec><jats:sec><jats:title>\u2022 Results:<\/jats:title><jats:p> Following one-to-one interviews, six superordinate themes were identified. These were: coping, pain, perceptions, emotional impact, social impact and support network, each with subordinate themes. All of the superordinate themes have been identified by previous research into chronic wounds, burns and disfiguring conditions; however, new subordinate themes arose. <\/jats:p><\/jats:sec><jats:sec><jats:title>\u2022 Conclusion:<\/jats:title><jats:p> This study highlighted the need for individuals with EB to have a multidisciplinary approach to their care with a particular need for pain management, psychological intervention and nursing support from those whom clients perceive as understanding the requirements of patients with EB. Further research into identity issues in individuals with EB is advocated. <\/jats:p><\/jats:sec><jats:sec><jats:title>\u2022 Declaration of interest:<\/jats:title><jats:p> There were no external sources of funding for this study. The authors have no conflicts of interest to declare. <\/jats:p><\/jats:sec>","DOI":"10.12968\/jowc.2012.21.11.528","type":"journal-article","created":{"date-parts":[[2014,5,23]],"date-time":"2014-05-23T12:59:05Z","timestamp":1400849945000},"page":"528-538","source":"Crossref","is-referenced-by-count":22,"title":["The psychosocial impact of chronic wounds on patients with severe epidermolysis bullosa"],"prefix":"10.12968","volume":"21","author":[{"given":"T.","family":"Adni","sequence":"first","affiliation":[{"name":"EB Service, Dermatology Department, Heart of England NHS Foundation Trust, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"K.","family":"Martin","sequence":"additional","affiliation":[{"name":"EB Service, Dermatology Department, Heart of England NHS Foundation Trust, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"E.","family":"Mudge","sequence":"additional","affiliation":[{"name":"Wound Healing Research Unit, Department of Wound Healing, School of Medicine, Cardiff University, UK."}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"5130","reference":[{"key":"B3","doi-asserted-by":"publisher","DOI":"10.1046\/j.1523-1747.2000.00930.x"},{"key":"B4","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2230.2002.01130.x"},{"key":"B5","doi-asserted-by":"publisher","DOI":"10.1038\/jid.1994.8"},{"key":"B6","doi-asserted-by":"publisher","DOI":"10.1038\/jid.1994.6"},{"key":"B7","doi-asserted-by":"publisher","DOI":"10.1007\/BF00370713"},{"key":"B8","doi-asserted-by":"publisher","DOI":"10.1001\/archopht.1980.01020030465003"},{"key":"B9","doi-asserted-by":"publisher","DOI":"10.1001\/archderm.1988.01670050062023"},{"key":"B10","doi-asserted-by":"publisher","DOI":"10.1016\/0140-6736(92)92759-9"},{"key":"B11","doi-asserted-by":"publisher","DOI":"10.12968\/jowc.2005.14.10.26851"},{"issue":"3","key":"B12","first-page":"1","volume":"1","author":"White R.","year":"2005","journal-title":"Wounds UK"},{"key":"B13","doi-asserted-by":"publisher","DOI":"10.2340\/00015555-0376"},{"key":"B14","doi-asserted-by":"publisher","DOI":"10.1177\/1049732311400431"},{"key":"B15","doi-asserted-by":"publisher","DOI":"10.1046\/j.1524-475X.2002.10606.x"},{"key":"B16","doi-asserted-by":"publisher","DOI":"10.1097\/00006527-199121000-00006"},{"issue":"1","key":"B17","first-page":"8","volume":"1","author":"McManus J.","year":"2007","journal-title":"End Life Care"},{"key":"B18","doi-asserted-by":"publisher","DOI":"10.1016\/S0002-8223(95)00157-3"},{"key":"B19","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-4632.2007.03316.x"},{"key":"B20","volume-title":"Clinical Management of Children and Adults with Epidermolysis Bullosa","author":"Hartley J.","year":"2003"},{"key":"B21","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2009.03.052"},{"issue":"2","key":"B22","first-page":"44","volume":"42","author":"Stotts N.A.","year":"1996","journal-title":"Ostomy Wound Manage"},{"key":"B23","doi-asserted-by":"publisher","DOI":"10.1001\/archsurg.1973.01350200078018"},{"key":"B24","doi-asserted-by":"publisher","DOI":"10.1002\/9780470774946"},{"key":"B25","doi-asserted-by":"publisher","DOI":"10.7748\/ns2007.07.21.45.57.c4585"},{"issue":"4","key":"B27","first-page":"272","volume":"17","author":"Beitz J.","year":"2005","journal-title":"Dermatol Nurs"},{"key":"B28","doi-asserted-by":"publisher","DOI":"10.7748\/ns2008.07.22.45.53.c6592"},{"key":"B29","doi-asserted-by":"publisher","DOI":"10.12968\/jowc.2005.14.2.26732"},{"key":"B30","doi-asserted-by":"publisher","DOI":"10.12968\/bjcn.2001.6.Sup2.12630"},{"key":"B32","doi-asserted-by":"publisher","DOI":"10.12968\/bjon.2004.13.9.12972"},{"key":"B33","doi-asserted-by":"publisher","DOI":"10.12968\/jowc.1994.3.2.99"},{"key":"B34","doi-asserted-by":"publisher","DOI":"10.12968\/jowc.2003.12.2.26469"},{"key":"B35","doi-asserted-by":"publisher","DOI":"10.12968\/jowc.2001.10.9.26318"},{"key":"B36","doi-asserted-by":"publisher","DOI":"10.12968\/bjon.2005.14.17.19751"},{"key":"B37","doi-asserted-by":"publisher","DOI":"10.12968\/bjon.2005.14.18.19888"},{"key":"B38","doi-asserted-by":"publisher","DOI":"10.1177\/104973202129119874"},{"key":"B39","doi-asserted-by":"publisher","DOI":"10.12968\/jowc.2003.12.7.26515"},{"key":"B40","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2008.04807.x"},{"key":"B41","doi-asserted-by":"publisher","DOI":"10.12968\/jowc.2006.15.2.26892"},{"key":"B42","unstructured":"Smith, J. 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