{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,4]],"date-time":"2026-10-04T02:00:29Z","timestamp":1791079229767,"version":"4.1.0"},"reference-count":58,"publisher":"Elsevier BV","issue":"4","license":[{"start":{"date-parts":[[2012,2,1]],"date-time":"2012-02-01T00:00:00Z","timestamp":1328054400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"}],"funder":[{"DOI":"10.13039\/501100001881","name":"NHS Service Delivery and Organisation Research and Development Programme","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100001881","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100000406","name":"Motor Neurone Disease Association","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100000406","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100000272","name":"National Institute for Health Research","doi-asserted-by":"crossref","award":["RP-PG-0608-10147"],"award-info":[{"award-number":["RP-PG-0608-10147"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Social Science & Medicine"],"published-print":{"date-parts":[[2012,2]]},"DOI":"10.1016\/j.socscimed.2011.10.036","type":"journal-article","created":{"date-parts":[[2011,12,11]],"date-time":"2011-12-11T09:13:40Z","timestamp":1323594820000},"page":"546-553","source":"Crossref","is-referenced-by-count":58,"title":["Being differently the same: The mediation of identity tensions in the sharing of illness experiences"],"prefix":"10.1016","volume":"74","author":[{"given":"Fadhila","family":"Mazanderani","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Louise","family":"Locock","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"Powell","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.socscimed.2011.10.036_bib1","series-title":"Pragmatic women and body politics","first-page":"310","article-title":"Selective compliance with biomedical authority and the uses of experiential knowledge","author":"Abel","year":"1998"},{"issue":"1","key":"10.1016\/j.socscimed.2011.10.036_bib2","doi-asserted-by":"crossref","first-page":"55","DOI":"10.1007\/s10897-005-1500-0","article-title":"The effect of experiential knowledge on construction of risk perception in hereditary breast\/ovarian cancer","volume":"14","author":"d'Agincourt-Canning","year":"2005","journal-title":"Journal of Genetic Counseling"},{"issue":"4","key":"10.1016\/j.socscimed.2011.10.036_bib3","doi-asserted-by":"crossref","first-page":"448","DOI":"10.1111\/1467-9566.ep11347516","article-title":"Expert and lay participation in the construction of medical knowledge","volume":"16","author":"Arksey","year":"1994","journal-title":"Sociology of Health & Illness"},{"issue":"3","key":"10.1016\/j.socscimed.2011.10.036_bib4","doi-asserted-by":"crossref","first-page":"313","DOI":"10.1111\/j.1369-7625.2009.00543.x","article-title":"Patient perspectives on health advice posted on Internet discussion boards: a qualitative study","volume":"12","author":"Armstrong","year":"2009","journal-title":"Health Expectations"},{"issue":"4","key":"10.1016\/j.socscimed.2011.10.036_bib5","doi-asserted-by":"crossref","first-page":"509","DOI":"10.1177\/1049732307311680","article-title":"\u2018We are here to give you emotional support\u2019: performing emotions in an online HIV\/AIDS support group","volume":"18","author":"Bar-Lev","year":"2008","journal-title":"Qualitative Health Research"},{"issue":"3","key":"10.1016\/j.socscimed.2011.10.036_bib6","doi-asserted-by":"crossref","first-page":"445","DOI":"10.1086\/643401","article-title":"Experiential knowledge: a new concept for the analysis of self-help groups","volume":"50","author":"Borkman","year":"1976","journal-title":"The Social Service Review"},{"issue":"03","key":"10.1016\/j.socscimed.2011.10.036_bib7","doi-asserted-by":"crossref","first-page":"207","DOI":"10.1191\/1463423603pc151oa","article-title":"User, carer and professional experiences of care in motor neurone disease","volume":"4","author":"Brown","year":"2003","journal-title":"Primary Health Care Research & Development"},{"issue":"3","key":"10.1016\/j.socscimed.2011.10.036_bib8","doi-asserted-by":"crossref","first-page":"263","DOI":"10.1111\/1467-9566.00252","article-title":"Illness narratives: fact or fiction","volume":"23","author":"Bury","year":"2001","journal-title":"Sociology of Health & Illness"},{"issue":"11","key":"10.1016\/j.socscimed.2011.10.036_bib9","doi-asserted-by":"crossref","first-page":"1161","DOI":"10.1016\/0277-9536(90)90256-R","article-title":"\u2018Discovering\u2019 chronic illness: using grounded theory","volume":"30","author":"Charmaz","year":"1990","journal-title":"Social Science & Medicine"},{"issue":"1","key":"10.1016\/j.socscimed.2011.10.036_bib10","doi-asserted-by":"crossref","first-page":"12","DOI":"10.2307\/3343116","article-title":"Citizen participation in health decision-making: past experience and future prospects","volume":"23","author":"Church","year":"2002","journal-title":"Journal of Public Health Policy"},{"issue":"7617","key":"10.1016\/j.socscimed.2011.10.036_bib11","doi-asserted-by":"crossref","first-page":"441","DOI":"10.1136\/bmj.39289.437454.AD","article-title":"Parkinson\u2019s disease","volume":"335","author":"Clarke","year":"2007","journal-title":"British Medical Journal"},{"issue":"10","key":"10.1016\/j.socscimed.2011.10.036_bib12","doi-asserted-by":"crossref","first-page":"2591","DOI":"10.1016\/j.socscimed.2005.11.021","article-title":"Cancer in the mass print media: fear, uncertainty and the medical model","volume":"62","author":"Clarke","year":"2006","journal-title":"Social Science & Medicine"},{"issue":"2\u20133","key":"10.1016\/j.socscimed.2011.10.036_bib13","doi-asserted-by":"crossref","first-page":"105","DOI":"10.1080\/01459740.1989.9965956","article-title":"AIDS and the dangerous other: metaphors of sex and deviance in the representation of disease","volume":"10","author":"Clatts","year":"1989","journal-title":"Medical Anthropology"},{"issue":"2","key":"10.1016\/j.socscimed.2011.10.036_bib14","doi-asserted-by":"crossref","first-page":"173","DOI":"10.1016\/j.pec.2007.06.002","article-title":"Social support in cyberspace: a content analysis of communication within a Huntington's disease online support group","volume":"68","author":"Coulson","year":"2007","journal-title":"Patient Education and Counseling"},{"issue":"3","key":"10.1016\/j.socscimed.2011.10.036_bib15","doi-asserted-by":"crossref","first-page":"623","DOI":"10.1046\/j.1365-2648.1997.t01-25-00999.x","article-title":"Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear boundaries?","volume":"26","author":"Coyne","year":"1997","journal-title":"Journal of Advanced Nursing"},{"key":"10.1016\/j.socscimed.2011.10.036_bib16","series-title":"Information for health: An information strategy for the modern NHS 1998\u20132005-executive summary","author":"Department of Health","year":"1998"},{"key":"10.1016\/j.socscimed.2011.10.036_bib17","series-title":"Saving lives: Our healthier nation","author":"Department of Health","year":"1999"},{"key":"10.1016\/j.socscimed.2011.10.036_bib18","series-title":"The expert patient: A new approach to chronic disease management for the 21st century","author":"Department of Health","year":"2001"},{"key":"10.1016\/j.socscimed.2011.10.036_bib19","series-title":"Equity and excellence: Liberating the NHS","author":"Department of Health","year":"2010"},{"issue":"7","key":"10.1016\/j.socscimed.2011.10.036_bib20","doi-asserted-by":"crossref","first-page":"920","DOI":"10.1111\/j.1467-9566.2005.00464.x","article-title":"Social capital and social support on the web: the case of an internet mother site","volume":"27","author":"Drentea","year":"2005","journal-title":"Sociology of Health & Illness"},{"issue":"1","key":"10.1016\/j.socscimed.2011.10.036_bib21","doi-asserted-by":"crossref","first-page":"115","DOI":"10.1089\/gte.2007.0057","article-title":"The influence of experiential knowledge on prenatal screening and testing decisions","volume":"12","author":"Etchegary","year":"2008","journal-title":"Genetic Testing"},{"issue":"2","key":"10.1016\/j.socscimed.2011.10.036_bib22","doi-asserted-by":"crossref","first-page":"117","DOI":"10.1177\/001872675400700202","article-title":"A\u00a0theory of social comparison processes","volume":"7","author":"Festinger","year":"1954","journal-title":"Human Relations"},{"issue":"5","key":"10.1016\/j.socscimed.2011.10.036_bib23","doi-asserted-by":"crossref","first-page":"755","DOI":"10.1016\/j.socscimed.2010.11.031","article-title":"How personal experiences feature in women's accounts of use of information for decisions about antenatal diagnostic testing for foetal abnormality","volume":"72","author":"France","year":"2011","journal-title":"Social Science & Medicine"},{"key":"10.1016\/j.socscimed.2011.10.036_bib24","series-title":"The wounded storyteller: Body, illness and ethics","author":"Frank","year":"1995"},{"issue":"3","key":"10.1016\/j.socscimed.2011.10.036_bib25","doi-asserted-by":"crossref","first-page":"325","DOI":"10.1177\/1049732307311640","article-title":"The presentation of \u2018pro-anorexia\u2019 in online group interactions","volume":"18","author":"Gavin","year":"2008","journal-title":"Qualitative Health Research"},{"issue":"2","key":"10.1016\/j.socscimed.2011.10.036_bib26","doi-asserted-by":"crossref","first-page":"139","DOI":"10.1207\/S15327027HC1402_1","article-title":"Embodied metaphor in women's narratives about their experiences with cancer","volume":"14","author":"Gibbs","year":"2002","journal-title":"Health Communication"},{"issue":"4","key":"10.1016\/j.socscimed.2011.10.036_bib27","doi-asserted-by":"crossref","first-page":"771","DOI":"10.1016\/j.socscimed.2007.04.005","article-title":"\u2018Am I normal?\u2019 Teenagers, sexual health and the internet","volume":"65","author":"Harvey","year":"2007","journal-title":"Social Science & Medicine"},{"key":"10.1016\/j.socscimed.2011.10.036_bib28","series-title":"Secondary analysis of qualitative data: A review of the literature","author":"Heaton","year":"2000"},{"key":"10.1016\/j.socscimed.2011.10.036_bib29","series-title":"Reworking qualitative data","author":"Heaton","year":"2004"},{"issue":"6","key":"10.1016\/j.socscimed.2011.10.036_bib30","doi-asserted-by":"crossref","first-page":"955","DOI":"10.1016\/S0277-9536(01)00068-5","article-title":"Representations of far-flung illnesses: the case of Ebola in Britain","volume":"54","author":"Joffe","year":"2002","journal-title":"Social Science & Medicine"},{"issue":"1","key":"10.1016\/j.socscimed.2011.10.036_bib31","doi-asserted-by":"crossref","first-page":"61","DOI":"10.1177\/016344300022001004","article-title":"Media templates: patterns of association and the (re)construction of meaning over time","volume":"22","author":"Kitzinger","year":"2000","journal-title":"Media, Culture & Society"},{"key":"10.1016\/j.socscimed.2011.10.036_bib32","series-title":"Metaphors we live by","author":"Lakoff","year":"2003"},{"issue":"3","key":"10.1016\/j.socscimed.2011.10.036_bib33","doi-asserted-by":"crossref","first-page":"23","DOI":"10.1111\/1467-9566.00338","article-title":"Lay experiences of health and illness: past research and future agendas","volume":"25","author":"Lawton","year":"2003","journal-title":"Sociology of Health & Illness"},{"issue":"8","key":"10.1016\/j.socscimed.2011.10.036_bib34","doi-asserted-by":"crossref","first-page":"1498","DOI":"10.1016\/j.socscimed.2010.06.043","article-title":"\u2018All in the same boat\u2019? Patient and carer attitudes to peer support and social comparison in motor neurone disease (MND)","volume":"71","author":"Locock","year":"2010","journal-title":"Social Science & Medicine"},{"issue":"7","key":"10.1016\/j.socscimed.2011.10.036_bib35","doi-asserted-by":"crossref","first-page":"1043","DOI":"10.1111\/j.1467-9566.2009.01176.x","article-title":"Biographical disruption, abruption and repair in the context of motor neurone disease","volume":"31","author":"Locock","year":"2009","journal-title":"Sociology of Health & Illness"},{"issue":"10","key":"10.1016\/j.socscimed.2011.10.036_bib36","doi-asserted-by":"crossref","first-page":"1476","DOI":"10.1177\/1049732309348368","article-title":"\u2018Making it all normal\u2019: the role of the Internet in problematic pregnancy","volume":"19","author":"Lowe","year":"2009","journal-title":"Qualitative Health Research"},{"issue":"1","key":"10.1016\/j.socscimed.2011.10.036_bib37","doi-asserted-by":"crossref","first-page":"35","DOI":"10.1111\/j.1467-9566.2007.01027.x","article-title":"\u2018Ordinary people only\u2019: knowledge, representativeness, and the publics of public participation in healthcare","volume":"30","author":"Martin","year":"2008","journal-title":"Sociology of Health & Illness"},{"issue":"7645","key":"10.1016\/j.socscimed.2011.10.036_bib38","doi-asserted-by":"crossref","first-page":"658","DOI":"10.1136\/bmj.39493.511759.BE","article-title":"Diagnosis and management of motor neurone disease","volume":"336","author":"McDermott","year":"2008","journal-title":"British Medical Journal"},{"issue":"3","key":"10.1016\/j.socscimed.2011.10.036_bib39","doi-asserted-by":"crossref","first-page":"339","DOI":"10.1177\/1359105309348808","article-title":"Living with HIV\/AIDS and use of online support groups","volume":"15","author":"Mo","year":"2010","journal-title":"Journal of Health Psychology"},{"key":"10.1016\/j.socscimed.2011.10.036_bib40","series-title":"The logic of care: Health and the problem of patient choice","author":"Mol","year":"2008"},{"key":"10.1016\/j.socscimed.2011.10.036_bib41","series-title":"Inventing AIDS","author":"Patton","year":"1990"},{"issue":"3","key":"10.1016\/j.socscimed.2011.10.036_bib42","doi-asserted-by":"crossref","first-page":"203","DOI":"10.1007\/s10728-005-6448-6","article-title":"Enacting appreciations: beyond the patient perspective","volume":"13","author":"Pols","year":"2005","journal-title":"Health Care Analysis"},{"key":"10.1016\/j.socscimed.2011.10.036_bib43","series-title":"The rule of metaphor: The creation of meaning in language","author":"Ricoeur","year":"2003"},{"issue":"12","key":"10.1016\/j.socscimed.2011.10.036_bib44","doi-asserted-by":"crossref","first-page":"1631","DOI":"10.1177\/1049732308327076","article-title":"A\u00a0space for suffering? Communicating breast cancer in an online self-help context","volume":"18","author":"Sandaunet","year":"2008","journal-title":"Qualitative Health Research"},{"issue":"3","key":"10.1016\/j.socscimed.2011.10.036_bib45","doi-asserted-by":"crossref","first-page":"308","DOI":"10.1111\/1467-9566.00254","article-title":"Sporting cancer: struggle language in news reports of people with cancer","volume":"23","author":"Seale","year":"2001","journal-title":"Sociology of Health & Illness"},{"issue":"6","key":"10.1016\/j.socscimed.2011.10.036_bib46","doi-asserted-by":"crossref","first-page":"513","DOI":"10.1111\/1467-9566.t01-1-00356","article-title":"Health and media: an overview","volume":"25","author":"Seale","year":"2003","journal-title":"Sociology of Health & Illness"},{"issue":"1","key":"10.1016\/j.socscimed.2011.10.036_bib47","doi-asserted-by":"crossref","first-page":"65","DOI":"10.1300\/J013v26n01_05","article-title":"Communicating breast cancer on-line: support and empowerment on the Internet","volume":"26","author":"Sharf","year":"1997","journal-title":"Women and Health"},{"key":"10.1016\/j.socscimed.2011.10.036_bib48","series-title":"Illness as metaphor","author":"Sontag","year":"1977"},{"key":"10.1016\/j.socscimed.2011.10.036_bib49","series-title":"AIDS and its metaphors","author":"Sontag","year":"1989"},{"issue":"1","key":"10.1016\/j.socscimed.2011.10.036_bib50","doi-asserted-by":"crossref","first-page":"99","DOI":"10.1016\/S0277-9536(96)00319-X","article-title":"Life stories and shared experience","volume":"45","author":"Steffen","year":"1997","journal-title":"Social Science & Medicine"},{"key":"10.1016\/j.socscimed.2011.10.036_bib51","series-title":"How to have theory in an epidemic: Cultural chronicles of AIDS","author":"Treichler","year":"1999"},{"issue":"9","key":"10.1016\/j.socscimed.2011.10.036_bib52","doi-asserted-by":"crossref","first-page":"1210","DOI":"10.1111\/j.1742-1241.2010.02371.x","article-title":"How should we treat a patient with early Parkinson's disease?","volume":"64","author":"Tsouli","year":"2010","journal-title":"International Journal of Clinical Practice"},{"issue":"1","key":"10.1016\/j.socscimed.2011.10.036_bib53","doi-asserted-by":"crossref","first-page":"36","DOI":"10.2307\/591262","article-title":"Hot crises and media reassurance: a comparison of emerging diseases and Ebola Zaire","volume":"49","author":"Ungar","year":"1998","journal-title":"The British Journal of Sociology"},{"issue":"3","key":"10.1016\/j.socscimed.2011.10.036_bib54","doi-asserted-by":"crossref","first-page":"405","DOI":"10.1177\/1049732307313429","article-title":"Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia","volume":"18","author":"van Uden-Kraan","year":"2008","journal-title":"Qualitative Health Research"},{"issue":"11","key":"10.1016\/j.socscimed.2011.10.036_bib55","doi-asserted-by":"crossref","first-page":"2629","DOI":"10.1016\/j.socscimed.2004.11.031","article-title":"Disease metaphors in new epidemics: the UK media framing of the 2003 SARS epidemic","volume":"60","author":"Wallis","year":"2005","journal-title":"Social Science & Medicine"},{"issue":"4","key":"10.1016\/j.socscimed.2011.10.036_bib56","doi-asserted-by":"crossref","first-page":"456","DOI":"10.1525\/maq.1997.11.4.456","article-title":"Signifying the pandemics: metaphors of AIDS, cancer, and heart disease","volume":"11","author":"Weiss","year":"1997","journal-title":"Medical Anthropology Quarterly"},{"issue":"2","key":"10.1016\/j.socscimed.2011.10.036_bib57","doi-asserted-by":"crossref","first-page":"175","DOI":"10.1111\/1467-9566.ep10778250","article-title":"The genesis of chronic illness: narrative re-construction","volume":"6","author":"Williams","year":"1984","journal-title":"Sociology of Health & Illness"},{"issue":"2","key":"10.1016\/j.socscimed.2011.10.036_bib58","doi-asserted-by":"crossref","first-page":"193","DOI":"10.1016\/j.pec.2005.07.002","article-title":"Support provision and emotional work in an Internet support group for cancer patients","volume":"62","author":"Winefield","year":"2006","journal-title":"Patient Education and Counseling"}],"container-title":["Social Science & Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0277953611006800?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0277953611006800?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2018,11,27]],"date-time":"2018-11-27T23:57:35Z","timestamp":1543363055000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0277953611006800"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2012,2]]},"references-count":58,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2012,2]]}},"alternative-id":["S0277953611006800"],"URL":"https:\/\/doi.org\/10.1016\/j.socscimed.2011.10.036","relation":{},"ISSN":["0277-9536"],"issn-type":[{"value":"0277-9536","type":"print"}],"subject":[],"published":{"date-parts":[[2012,2]]}}}