{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T09:37:35Z","timestamp":1790761055708,"version":"4.1.0"},"reference-count":44,"publisher":"Wiley","issue":"7","license":[{"start":{"date-parts":[[2013,11,21]],"date-time":"2013-11-21T00:00:00Z","timestamp":1384992000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"Faculty of Health & Life Sciences of the University of the West of England"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Advanced Nursing"],"published-print":{"date-parts":[[2014,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Aims<\/jats:title><jats:p>To explore the day\u2010to\u2010day experience of young people living with neurofibromatosis type 1 in the <jats:styled-content style=\"fixed-case\">UK<\/jats:styled-content>, focusing on the role that appearance plays in this experience.<\/jats:p><\/jats:sec><jats:sec><jats:title>Background<\/jats:title><jats:p>neurofibromatosis type 1 is a genetic condition, which is highly variable and unpredictable. It can result in varying degrees of visible difference (disfigurement). Both the effect of <jats:styled-content style=\"fixed-case\">NF<\/jats:styled-content>1 on appearance and its uncertainty can prove particularly difficult for those affected. However, very little research to date has investigated the psychosocial impact of neurofibromatosis type 1 on young people or their experiences of managing it.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>Exploratory qualitative interview study.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Nine young people aged 14\u201324, with a confirmed diagnosis of neurofibromatosis type 1, took part in semi\u2010structured interviews between March\u2013September 2011. Interview transcripts were thematically analysed.<\/jats:p><\/jats:sec><jats:sec><jats:title>Findings<\/jats:title><jats:p>Three key themes were identified from the data: (1) \u2018Different things to different people\u2019 reflecting the variability in the condition; (2) \u2018Relationships and reactions\u2019 relating to individuals\u2019 social experience; and (3) \u2018Understanding and misunderstanding\u2019 reflecting participants\u2019 experiences with organizations and social structures.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Findings suggest a need for further research to explore young people's adaptation and management of neurofibromatosis type 1. In particular, raising awareness and understanding of the condition among professionals and in the general public was an important issue for young people. In addition, access to trustworthy information about neurofibromatosis type 1 and practical advice to support adjustment to an altered appearance and managing stigma experiences are highlighted as areas to be considered further.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jan.12319","type":"journal-article","created":{"date-parts":[[2013,11,22]],"date-time":"2013-11-22T04:09:43Z","timestamp":1385093383000},"page":"1594-1603","source":"Crossref","is-referenced-by-count":23,"title":["\u2018It's like a bag of pick and mix \u2013 you don't know what you are going to get\u2019: young people's experience of neurofibromatosis Type 1"],"prefix":"10.1111","volume":"70","author":[{"given":"Jenny","family":"Barke","sequence":"first","affiliation":[{"name":"Centre for Appearance Research (CAR) University of the West of England Bristol UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Diana","family":"Harcourt","sequence":"additional","affiliation":[{"name":"Centre for Appearance Research (CAR) University of the West of England Bristol UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jane","family":"Coad","sequence":"additional","affiliation":[{"name":"Centre for Children and Families Applied Research (CCFAR) Faculty of Health and Life Sciences Coventry University UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2013,11,21]]},"reference":[{"key":"e_1_2_11_2_1","volume-title":"Living with Genetic Disorder: The Impact of Neurofibromatosis 1","author":"Ablon J.","year":"1999"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.7748\/paed.20.10.32.s27"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0012162204000921"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2006.00717.x"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1080\/135485099106270"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1177\/1744987107081250"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1207\/s15326888chc2404_2"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1540-5826.2004.00099.x"},{"issue":"1","key":"e_1_2_11_11_1","doi-asserted-by":"crossref","first-page":"3","DOI":"10.53841\/bpshpu.2009.18.1.3","article-title":"\u2018I have NF. 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