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The aims of the study were to explore the psychosocial impact of epidermolysis bullosa on affected adults and to identify associated support needs. We collected data using semistructured interviews and employed inductive thematic analysis to organize and analyze them. Three main themes\u2014beliefs about containing the impact of EB, understandings of the disease, and the disabling impact of EB\u2014describe the ways in which living with EB influences the daily lives of participants at intraindividual, interindividual, and sociocultural levels. The associated support needs ranged in type and intensity, from a preference for brief, skills-based interventions and the facilitation of peer support through to longer-term specialist psychological support. The results highlight how the particular combination of the rarity of the disease, its lifelong and hereditary nature, and its disfiguring impact on the skin differentiate epidermolysis bullosa from other chronic conditions.<\/jats:p>","DOI":"10.1177\/1049732311400431","type":"journal-article","created":{"date-parts":[[2011,2,22]],"date-time":"2011-02-22T23:12:47Z","timestamp":1298416367000},"page":"771-782","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":63,"title":["The Psychosocial Impact of Epidermolysis Bullosa"],"prefix":"10.1177","volume":"21","author":[{"given":"Emma","family":"Dures","sequence":"first","affiliation":[{"name":"University of the West of England, Bristol, United Kingdom,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marianne","family":"Morris","sequence":"additional","affiliation":[{"name":"University of the West of England, Bristol, United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kate","family":"Gleeson","sequence":"additional","affiliation":[{"name":"University of Bristol, Bristol, United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nichola","family":"Rumsey","sequence":"additional","affiliation":[{"name":"University of the West of England, Bristol, United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2011,2,22]]},"reference":[{"key":"atypb1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732309353046"},{"key":"atypb2","doi-asserted-by":"publisher","DOI":"10.1159\/000064496"},{"key":"atypb3","doi-asserted-by":"publisher","DOI":"10.1177\/146879410100100307"},{"key":"atypb4","volume-title":"Proceedings of the IInd international symposium on epidermolysis bullosa","author":"Azizkhan, R.G."},{"key":"atypb5","doi-asserted-by":"crossref","first-page":"233","DOI":"10.1016\/S0151-9638(07)91814-1","volume":"134","author":"Belhadjali, H.","year":"2007","journal-title":"Annales De Dermatologie Et De Venereologie"},{"key":"atypb6","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"atypb7","doi-asserted-by":"publisher","DOI":"10.1177\/160940690900800105"},{"key":"atypb8","doi-asserted-by":"publisher","DOI":"10.1016\/S0020-7489(02)00092-5"},{"key":"atypb9","volume-title":"The expert patient: A new approach to chronic disease management for the 21st Century","author":"Department of Health.","year":"2001"},{"key":"atypb10","volume":"5411","author":"Department of Health.","year":"2007","journal-title":"Gateway reference"},{"key":"atypb11","volume-title":"An exploration of the psychosocial impact of epidermolysis bullosa on the daily lives of affected adults and identification of associated support needs","author":"Dures, E.","year":"2009"},{"key":"atypb12","doi-asserted-by":"publisher","DOI":"10.1177\/1468794105054455"},{"key":"atypb13","doi-asserted-by":"publisher","DOI":"10.1177\/160940690600500107"},{"key":"atypb14","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2133.2004.06339.x"},{"key":"atypb15","doi-asserted-by":"publisher","DOI":"10.1046\/j.1440-1614.2002.01100.x"},{"key":"atypb16","doi-asserted-by":"publisher","DOI":"10.1177\/1049732306298754"},{"issue":"1","key":"atypb17","volume":"28","author":"Frew, J.W.","year":"2010","journal-title":"Dermatologic Clinics"},{"key":"atypb18","doi-asserted-by":"publisher","DOI":"10.1097\/00002727-200404000-00012"},{"key":"atypb19","doi-asserted-by":"publisher","DOI":"10.1891\/0730-0832.23.6.25"},{"key":"atypb20","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2004.08.010"},{"key":"atypb21","doi-asserted-by":"publisher","DOI":"10.1177\/1049732306287599"},{"key":"atypb22","volume-title":"Doing psychological research","author":"Hayes, N.","year":"2000"},{"key":"atypb23","doi-asserted-by":"publisher","DOI":"10.2337\/diaspect.20.4.214"},{"key":"atypb24","doi-asserted-by":"publisher","DOI":"10.1046\/j.1460-9592.2002.00768.x"},{"key":"atypb25","doi-asserted-by":"publisher","DOI":"10.1177\/1049732307308305"},{"key":"atypb26","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2133.1997.tb02141.x"},{"key":"atypb27","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2230.2002.01121.x"},{"key":"atypb28","doi-asserted-by":"publisher","DOI":"10.1177\/1049732307308761"},{"key":"atypb29","doi-asserted-by":"publisher","DOI":"10.1097\/01720610-200807000-00007"},{"key":"atypb30","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2004.03237.x"},{"key":"atypb31","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.1986.tb00504.x"},{"key":"atypb32","doi-asserted-by":"publisher","DOI":"10.1177\/1049732309348368"},{"key":"atypb33","unstructured":"Luskin Biordi, D., Warner, A.M. & Knapik, G.P. 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