{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,10]],"date-time":"2026-10-10T00:14:31Z","timestamp":1791591271044,"version":"4.3.4"},"reference-count":47,"publisher":"Wiley","issue":"9-10","license":[{"start":{"date-parts":[[2018,5,27]],"date-time":"2018-05-27T00:00:00Z","timestamp":1527379200000},"content-version":"vor","delay-in-days":26,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"Addenbrooke's Charitable Trust and was conducted as part of a National Institute of Health Research Masters in Clinical Research studentship"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Clinical Nursing"],"published-print":{"date-parts":[[2018,5]]},"abstract":"<jats:sec><jats:title>Aims and objectives<\/jats:title><jats:p>To evaluate the impact of lipodystrophy on body image and how this affects patients\u2019 daily lives.<\/jats:p><\/jats:sec><jats:sec><jats:title>Background<\/jats:title><jats:p>Lipodystrophy refers to a group of rare conditions characterised by generalised or partial lack of body fat and is associated with severe metabolic problems, for example, severe insulin resistance, diabetes and pancreatitis. In addition to its metabolic effect, lack of adipose tissue may have a major impact on appearance and cause distressing physical changes. While global research has focused on diagnosis and management, there is no published work investigating the psychological effects of lipodystrophy on body image.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Following ethical approval, participants with lipodystrophy were purposively sampled from the National Severe Insulin Resistance Service in Cambridge, <jats:styled-content style=\"fixed-case\">UK<\/jats:styled-content>, and invited to take part in a semi\u2010structured interview. Eleven (10 female, one male) interviews were conducted and digitally recorded. Data were analysed using an inductive thematic approach.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Four main themes were identified in the data set; \u201cAlways feeling appearance was different,\u201d \u201ca better understanding of lipodystrophy is needed,\u201d \u201cfeeling accepted\u201d and \u201cthere's more to lipodystrophy than managing symptoms.\u201d Participants spoke of distressing cosmetic effects related to lack of fat tissue and other changes related to lipodystrophy, contributing to negative body image. For some, negative body image led to feelings of worthlessness impacting daily life and adherence to treatment. Psychological support was lacking but desired by participants.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Lipodystrophy contributes to negative body image affecting patients\u2019 daily lives. Patients wanted psychological support alongside medical management. Further research is needed to determine how best to deliver psychological support and to evaluate its impact on well\u2010being and metabolic management.<\/jats:p><\/jats:sec><jats:sec><jats:title>Relevance to clinical practice<\/jats:title><jats:p>The effects of rare diseases such as lipodystrophy on appearance can be distressing for patients. Support beyond medical management is needed to improve patients\u2019 daily lives and help them to live well with appearance\u2010altering conditions.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jocn.14342","type":"journal-article","created":{"date-parts":[[2018,3,8]],"date-time":"2018-03-08T07:42:42Z","timestamp":1520494962000},"page":"1958-1968","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":32,"title":["\u201cWe're stuck with what we've got\u201d: The impact of lipodystrophy on body image"],"prefix":"10.1111","volume":"27","author":[{"given":"Claire","family":"Adams","sequence":"first","affiliation":[{"name":"Addenbrooke's Treatment Centre Wellcome Trust\u2010MRC Institute of Metabolic Science Addenbrooke's Hospital University of Cambridge Metabolic Research Laboratories Cambridge UK"},{"name":"Addenbrooke's Treatment Centre National Severe Insulin Resistance Service Cambridge University Hospitals NHS Foundation Trust Cambridge UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna","family":"Stears","sequence":"additional","affiliation":[{"name":"Addenbrooke's Treatment Centre National Severe Insulin Resistance Service Cambridge University Hospitals NHS Foundation Trust Cambridge UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Savage","sequence":"additional","affiliation":[{"name":"Addenbrooke's Treatment Centre Wellcome Trust\u2010MRC Institute of Metabolic Science Addenbrooke's Hospital University of Cambridge Metabolic Research Laboratories Cambridge UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christi","family":"Deaton","sequence":"additional","affiliation":[{"name":"National Severe Insulin Resistance Service Cambridge Institute of Public Health University of Cambridge School of Clinical Medicine Cambridge UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2018,5,27]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.12968\/bjon.2012.21.19.1138"},{"key":"e_1_2_12_3_1","volume-title":"Research methods in health\u202f: Investigating health and health services","author":"Bowling A.","year":"2009"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1210\/jc.2016-2466"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-004-2580-2"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-004-2580-2"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1093\/oxfordhb\/9780199580521.013.0035"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bjps.2011.02.009"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1740-1445(03)00023-8"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpsychores.2004.07.008"},{"key":"e_1_2_12_12_1","unstructured":"Changing Faces. (2017).Disfigurement in the UK disfigurement. Retrieved fromhttps:\/\/www.changingfaces.org.uk\/wp-content\/uploads\/2017\/05\/DITUK.pdf"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0738-3991(00)00169-5"},{"issue":"9","key":"e_1_2_12_14_1","first-page":"546","article-title":"Psychosocial impact of the Lipodystrophy syndrome in HIV infection","volume":"10","author":"Collins E.","year":"2000","journal-title":"AIDS Reader"},{"key":"e_1_2_12_15_1","unstructured":"Department of Health Clinical Standards Advisory Group(2013).NHS standard contract for cleft lip and\/or palate services including non\u2010cleft Velopharyngeal Dysfunction (VPD) (All Ages). Retrieved fromhttps:\/\/www.england.nhs.uk\/wp-content\/uploads\/2013\/06\/d07-cleft-lip.pdf"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.2147\/DMSO.S130810"},{"key":"e_1_2_12_17_1","volume-title":"Qualitative methods for health research","author":"Green J.","year":"2009"},{"key":"e_1_2_12_18_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11606-011-1704-y"},{"key":"e_1_2_12_19_1","volume-title":"Body image: Understanding body dissatisfaction in men, women and children","author":"Grogan S.","year":"2008"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1093\/oxfordhb\/9780199580521.013.0041"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1093\/oxfordhb\/9780199580521.013.0033"},{"key":"e_1_2_12_22_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/keu448"},{"key":"e_1_2_12_23_1","doi-asserted-by":"publisher","DOI":"10.1093\/oxfordhb\/9780199580521.013.0019"},{"key":"e_1_2_12_24_1","doi-asserted-by":"publisher","DOI":"10.1677\/JOE-10-0272"},{"key":"e_1_2_12_25_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bjps.2011.01.001"},{"key":"e_1_2_12_26_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1369-7625.2009.00552.x"},{"key":"e_1_2_12_27_1","doi-asserted-by":"publisher","DOI":"10.1093\/qjmed\/90.1.27"},{"key":"e_1_2_12_28_1","doi-asserted-by":"publisher","DOI":"10.1080\/09540120902923014"},{"key":"e_1_2_12_29_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0002-9343(02)01156-7"},{"key":"e_1_2_12_30_1","unstructured":"Limb L. Nutt S. &Sen A.(2010).Experiences of Rare Diseases: An Insight from Patients and Families. Rare Disease UK. Retrieved fromhttp:\/\/www.raredisease.org.uk\/our-work\/experiences-of-rare-diseases-an-insight-from-patients-and-families-2010\/"},{"key":"e_1_2_12_31_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732315617444"},{"key":"e_1_2_12_32_1","volume-title":"Qualitative research & evaluation methods\u202f: Integrating theory and practice","author":"Patton M. Q.","year":"2002"},{"key":"e_1_2_12_33_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10461-008-9444-7"},{"key":"e_1_2_12_34_1","unstructured":"Public Health England. (2015).HIV IN THE UK STATISTICS \u2010 2015. Retrieved fromhttp:\/\/www.nat.org.uk\/we-inform\/HIV-statistics\/UK-statistics"},{"key":"e_1_2_12_35_1","doi-asserted-by":"publisher","DOI":"10.1136\/sti.79.2.137"},{"key":"e_1_2_12_36_1","volume-title":"NVivo qualitative data analysis Software","author":"QSR International Pty Ltd","year":"2012"},{"key":"e_1_2_12_37_1","doi-asserted-by":"publisher","DOI":"10.1080\/09540120500287051"},{"key":"e_1_2_12_38_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.molmed.2015.04.004"},{"key":"e_1_2_12_39_1","doi-asserted-by":"publisher","DOI":"10.1177\/0887302X0101900303"},{"key":"e_1_2_12_40_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1740-1445(03)00005-6"},{"key":"e_1_2_12_41_1","doi-asserted-by":"publisher","DOI":"10.1089\/108729102760330254"},{"key":"e_1_2_12_42_1","doi-asserted-by":"publisher","DOI":"10.1016\/B978-0-12-374430-2.00004-3"},{"key":"e_1_2_12_43_1","doi-asserted-by":"publisher","DOI":"10.2217\/clp.14.13"},{"key":"e_1_2_12_44_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0272-7358(00)00056-8"},{"key":"e_1_2_12_45_1","doi-asserted-by":"publisher","DOI":"10.1037\/1524-9220.8.1.15"},{"key":"e_1_2_12_46_1","volume-title":"Overcoming body image problems including body dysmorphic disorder\u202f: A self\u2010help guide using Cognitive Behavioral Techniques","author":"Veale D.","year":"2009"},{"key":"e_1_2_12_47_1","first-page":"149","article-title":"Weight status and body image perceptions in adolescents: Current perspectives","volume":"6","author":"Voelker D. K.","year":"2015","journal-title":"Adolesc Health Med Ther"},{"key":"e_1_2_12_48_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bodyim.2009.07.008"}],"container-title":["Journal of Clinical Nursing"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fjocn.14342","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jocn.14342","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,10]],"date-time":"2023-09-10T12:54:12Z","timestamp":1694350452000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jocn.14342"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,5]]},"references-count":47,"journal-issue":{"issue":"9-10","published-print":{"date-parts":[[2018,5]]}},"alternative-id":["10.1111\/jocn.14342"],"URL":"https:\/\/doi.org\/10.1111\/jocn.14342","archive":["Portico"],"relation":{},"ISSN":["0962-1067","1365-2702"],"issn-type":[{"value":"0962-1067","type":"print"},{"value":"1365-2702","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,5]]},"assertion":[{"value":"2018-02-24","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2018-05-27","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}