{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T07:16:36Z","timestamp":1792048596736,"version":"4.4.0"},"reference-count":54,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2019,6,1]],"date-time":"2019-06-01T00:00:00Z","timestamp":1559347200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2019,6,1]],"date-time":"2019-06-01T00:00:00Z","timestamp":1559347200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"}],"funder":[{"name":"ASD"},{"DOI":"10.13039\/100006418","name":"Brown","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100006418","id-type":"DOI","asserted-by":"crossref"}]},{"name":"ND"},{"name":"ASD"},{"DOI":"10.13039\/501100001636","name":"University College Cork","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100001636","id-type":"DOI","asserted-by":"crossref"}]},{"name":"National Disability Authority (Ireland) Research Promotion"}],"content-domain":{"domain":["elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Social Science & Medicine"],"published-print":{"date-parts":[[2019,6]]},"DOI":"10.1016\/j.socscimed.2019.04.022","type":"journal-article","created":{"date-parts":[[2019,4,19]],"date-time":"2019-04-19T01:41:53Z","timestamp":1555638113000},"page":"264-270","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":30,"special_numbering":"C","title":["Siblings caring for siblings with Intellectual Disabilities: Naming and negotiating emotional tensions"],"prefix":"10.1016","volume":"230","author":[{"given":"M\u00e1ire","family":"Leane","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"3","key":"10.1016\/j.socscimed.2019.04.022_bib1","first-page":"341","article-title":"Personalisation, family relationship and autism: conceptualising the role of adult siblings","volume":"14","author":"Atkin","year":"2015","journal-title":"J. Soc. Work"},{"issue":"42","key":"10.1016\/j.socscimed.2019.04.022_bib2","first-page":"292","article-title":"My brother likes meeting new people, but don't ask him any direct questions': involving adults with autism plus learning disability in a qualitative research project","volume":"4","author":"Atkin","year":"2014","journal-title":"Br. J. Learn. Disabil."},{"issue":"2","key":"10.1016\/j.socscimed.2019.04.022_bib3","doi-asserted-by":"crossref","first-page":"87","DOI":"10.1111\/j.1741-1130.2006.00059.x","volume":"3","author":"Barron","year":"2006","journal-title":"J. Pol. Pract. Intellect. Disabil."},{"key":"10.1016\/j.socscimed.2019.04.022_bib4","doi-asserted-by":"crossref","first-page":"410","DOI":"10.1016\/j.pedn.2007.08.013","article-title":"Siblings' experiences of having a brother or sister with autism and mental retardation: a case study of 14 siblings from five families","volume":"22","author":"Benderix","year":"2007","journal-title":"Int. Paediatr. Nurs."},{"issue":"4","key":"10.1016\/j.socscimed.2019.04.022_bib5","doi-asserted-by":"crossref","first-page":"333","DOI":"10.1111\/j.1468-3148.1997.tb00028.x","article-title":"When parents relinquish care: informal support networks of older people with intellectual disability","volume":"10","author":"Bigby","year":"1997","journal-title":"J. Appl. Res. Intellect. Disabil."},{"key":"10.1016\/j.socscimed.2019.04.022_bib6","series-title":"Emotional Geographies","first-page":"231","article-title":"The place of emotions in research: from partitioning emotion and reason to the emotional dynamics of research relationships","author":"Bondi","year":"2005"},{"issue":"2","key":"10.1016\/j.socscimed.2019.04.022_bib7","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"Braun","year":"2006","journal-title":"Qual. Res. Psychol."},{"key":"10.1016\/j.socscimed.2019.04.022_bib8","doi-asserted-by":"crossref","first-page":"226","DOI":"10.1111\/jar.12379","article-title":"\u201cWhat's going to happen when we\u2019re gone?\u201d Family caregiving capacity for older people with an intellectual disability in Ireland","volume":"31","author":"Brennan","year":"2018","journal-title":"J. Appl. Res. Intellect. Disabil."},{"issue":"2","key":"10.1016\/j.socscimed.2019.04.022_bib9","doi-asserted-by":"crossref","first-page":"119","DOI":"10.1111\/jar.12003","article-title":"Family voices: life for family carers of people with intellectual disabilities in Ireland","volume":"26","author":"Chadwick","year":"2013","journal-title":"J. Appl. Res. Intellect. Disabil."},{"issue":"4","key":"10.1016\/j.socscimed.2019.04.022_bib10","doi-asserted-by":"crossref","first-page":"550","DOI":"10.1111\/j.1467-9566.2007.01072.x","article-title":"The moral economy of selfhood and caring: negotiating boundaries of personal care as embodied moral practice","volume":"30","author":"Chatoo","year":"2008","journal-title":"Sociol. Health Illness"},{"issue":"1","key":"10.1016\/j.socscimed.2019.04.022_bib11","doi-asserted-by":"crossref","first-page":"6","DOI":"10.1002\/ddrr.1123","article-title":"People with intellectual disability: what do we know about adulthood and life expectancy?","volume":"18","author":"Coppus","year":"2013","journal-title":"Develop. Disabil. Res. Rev."},{"issue":"3","key":"10.1016\/j.socscimed.2019.04.022_bib12","doi-asserted-by":"crossref","first-page":"167","DOI":"10.1177\/1744629510385625","article-title":"Future planning, parental expectations and sibling concern for people who have a learning disability","volume":"14","author":"Davys","year":"2010","journal-title":"J. Intellect. Disabil."},{"key":"10.1016\/j.socscimed.2019.04.022_bib13","doi-asserted-by":"crossref","first-page":"219","DOI":"10.1111\/bld.12099","article-title":"Futures planning: adult sibling perspective","volume":"43","author":"Davys","year":"2014","journal-title":"Br. J. Learn. Disabil."},{"issue":"3","key":"10.1016\/j.socscimed.2019.04.022_bib14","doi-asserted-by":"crossref","first-page":"220","DOI":"10.1111\/jar.12172","article-title":"Adult siblings consider the future: emergent themes","volume":"29","author":"Davys","year":"2016","journal-title":"J. Appl. Res. Intellect. Disabil."},{"key":"10.1016\/j.socscimed.2019.04.022_bib15","first-page":"172","article-title":"Harmonizing dilemmas: siblings of children with DAMP and Asperger Syndrome's experiences of coping with their life situations","volume":"43","author":"Dellve","year":"2000","journal-title":"Scand. J. Caring Sci."},{"key":"10.1016\/j.socscimed.2019.04.022_bib16","series-title":"Value for Money and Policy Review of Disability Services in Ireland","author":"Department of Health","year":"2012"},{"key":"10.1016\/j.socscimed.2019.04.022_bib17","doi-asserted-by":"crossref","first-page":"224","DOI":"10.1016\/j.ridd.2009.09.007","article-title":"Sibling relationships in adults who have siblings with or without intellectual disabilities","volume":"31","author":"Doody","year":"2010","journal-title":"Res. Dev. Disabil."},{"issue":"2","key":"10.1016\/j.socscimed.2019.04.022_bib18","doi-asserted-by":"crossref","first-page":"111","DOI":"10.1016\/j.emospa.2009.08.003","article-title":"Emotional interactions and an ethics of care: caring relations in families affected by HIV and AIDS","volume":"2","author":"Evans","year":"2009","journal-title":"Emotion Space Soc."},{"key":"10.1016\/j.socscimed.2019.04.022_bib19","doi-asserted-by":"crossref","first-page":"25","DOI":"10.1177\/001100007500500207","article-title":"Empathy in children: some theoretical and empirical considerations","volume":"5","author":"Feshbacch","year":"1975","journal-title":"Counsel. Psychol."},{"key":"10.1016\/j.socscimed.2019.04.022_bib20","series-title":"A Labour of Love: Women, Work and Caring","author":"Finch","year":"1983"},{"key":"10.1016\/j.socscimed.2019.04.022_bib21","series-title":"In a Different Voice: Psychological Theory and Women's Development","author":"Gilligan","year":"1982"},{"key":"10.1016\/j.socscimed.2019.04.022_bib22","series-title":"Joining the Resistance","author":"Gilligan","year":"2011"},{"key":"10.1016\/j.socscimed.2019.04.022_bib23","series-title":"We Exist Too: Valuing the Contributions of Siblings","author":"Gomez de la Cuesta","year":"2012"},{"key":"10.1016\/j.socscimed.2019.04.022_bib24","doi-asserted-by":"crossref","first-page":"1214","DOI":"10.1176\/ps.50.9.1214","article-title":"Siblings of adults with mental illness or mental retardation: current involvement and expectation of future caregiving","volume":"5","author":"Greenberg","year":"1999","journal-title":"Psychiatr. Serv."},{"key":"10.1016\/j.socscimed.2019.04.022_bib25","series-title":"Flourishing: Positive Psychology and the Life Well-Lived","first-page":"275","article-title":"Elevation and the positive psychology of morality","author":"Haidt","year":"2003"},{"key":"10.1016\/j.socscimed.2019.04.022_bib26","series-title":"Time to Move on from Congregated Settings","author":"Health Service Executive","year":"2011"},{"key":"10.1016\/j.socscimed.2019.04.022_bib27","series-title":"New Directions","author":"Health Service Executive","year":"2012"},{"key":"10.1016\/j.socscimed.2019.04.022_bib28","series-title":"The Ethics of Care: Personal, Political and Global","author":"Held","year":"2006"},{"issue":"1","key":"10.1016\/j.socscimed.2019.04.022_bib29","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1111\/j.1741-1130.2010.00243.x","article-title":"Siblings of adults with developmental disabilities: psychosocial outcomes, relationships, and future planning","volume":"7","author":"Heller","year":"2010","journal-title":"J. Pol. Pract. Intellect. Disabil."},{"key":"10.1016\/j.socscimed.2019.04.022_bib30","doi-asserted-by":"crossref","first-page":"186","DOI":"10.1016\/j.socscimed.2012.08.037","article-title":"The emotional overlay: older person and carer perspectives on negotiating aging and care in rural Ontario","volume":"91","author":"Herron","year":"2013","journal-title":"Soc. Sci. Med."},{"issue":"2","key":"10.1016\/j.socscimed.2019.04.022_bib31","doi-asserted-by":"crossref","first-page":"1018","DOI":"10.1111\/j.1365-2788.2007.00994.x","article-title":"Adult siblings of individuals with down syndrome versus with autism: findings from a large-scale US study","volume":"51","author":"Hodapp","year":"2007","journal-title":"J. Intellect. Disabil. Res."},{"key":"10.1016\/j.socscimed.2019.04.022_bib32","series-title":"HRB Statistics Series 37 Annual Report of the National Intellectual Disability Database Committee 2017 Main Findings","author":"Hourigan","year":"2017"},{"key":"10.1016\/j.socscimed.2019.04.022_bib33","doi-asserted-by":"crossref","first-page":"78","DOI":"10.1016\/j.socscimed.2013.07.023","article-title":"Personal identity and the role of \u2018carer\u2019 among relatives and friends of people with multiple sclerosis","volume":"96","author":"Hughes","year":"2013","journal-title":"Soc. Sci. Med."},{"key":"10.1016\/j.socscimed.2019.04.022_bib34","series-title":"(Submission to the Department of Health On homecare services in Ireland)","author":"Inclusion Ireland","year":"2017"},{"key":"10.1016\/j.socscimed.2019.04.022_bib35","series-title":"Aras Attracta manager successfully appeals prison sentence","author":"Irish Times","year":"2016"},{"key":"10.1016\/j.socscimed.2019.04.022_bib36","series-title":"Love's Labour: Essays on Women, Equality and Dependence","author":"Kittay","year":"1999"},{"issue":"3","key":"10.1016\/j.socscimed.2019.04.022_bib37","doi-asserted-by":"crossref","first-page":"410","DOI":"10.1057\/dev.2009.38","article-title":"Affective equality: who cares?","volume":"52","author":"Lynch","year":"2009","journal-title":"Development"},{"key":"10.1016\/j.socscimed.2019.04.022_bib38","series-title":"Relational Autonomy: Feminist Perspectives on Autonomy, Agency and the Social Self","article-title":"Autonomy refigured","author":"Mackenzie","year":"2000"},{"issue":"2","key":"10.1016\/j.socscimed.2019.04.022_bib39","doi-asserted-by":"crossref","first-page":"104","DOI":"10.1111\/j.1365-2788.2009.01239.x","article-title":"Deinstitutionalisation and community living: position statement of the comparative policy and practice special interest research group of the international association for the scientific study of intellectual disabilities","volume":"54","author":"Mansell","year":"2010","journal-title":"J. Intellect. Disabil. Res."},{"key":"10.1016\/j.socscimed.2019.04.022_bib40","doi-asserted-by":"crossref","first-page":"418","DOI":"10.1016\/j.rasd.2010.06.004","article-title":"The increasing prevalence of autism spectrum disorders","volume":"5","author":"Matson","year":"2011","journal-title":"Res. Autism Spectr. Disord."},{"key":"10.1016\/j.socscimed.2019.04.022_bib41","series-title":"A Companion to Health and Medical Geography","article-title":"The changing geography of care","author":"Milligan","year":"2010"},{"key":"10.1016\/j.socscimed.2019.04.022_bib42","series-title":"Upheavals of Thought: the Intelligence of Emotions","author":"Nussbaum","year":"2001"},{"issue":"9","key":"10.1016\/j.socscimed.2019.04.022_bib44","doi-asserted-by":"crossref","first-page":"682","DOI":"10.1111\/j.1365-2788.2007.00954.x","article-title":"Siblings of individuals with autism or Down syndrome: effects on adult lives","volume":"51","author":"Orsmond","year":"2007","journal-title":"J. Intellect. Disabil. Res."},{"key":"10.1016\/j.socscimed.2019.04.022_bib45","article-title":"Ageing with a learning disability: care and support in the context of austerity","author":"Power","year":"2018","journal-title":"Soc. Sci. Med."},{"issue":"1","key":"10.1016\/j.socscimed.2019.04.022_bib46","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1177\/1754073915615429","article-title":"What emotions motivate care?","volume":"9","author":"Pulcini","year":"2017","journal-title":"Emot. Rev."},{"key":"10.1016\/j.socscimed.2019.04.022_bib47","series-title":"Narrative Analysis","author":"Riessman","year":"1993"},{"issue":"7","key":"10.1016\/j.socscimed.2019.04.022_bib48","doi-asserted-by":"crossref","first-page":"63","DOI":"10.1016\/j.socscimed.2017.12.001","article-title":"The consequence of \u201cdoing nothing\u201d: family caregiving for Alzheimer's disease as non-action in the US","volume":"19","author":"Seaman","year":"2018","journal-title":"Soc. Sci. Med."},{"key":"10.1016\/j.socscimed.2019.04.022_bib49","doi-asserted-by":"crossref","first-page":"345","DOI":"10.1146\/annurev.psych.56.091103.070145","article-title":"Moral emotions and moral behaviour","volume":"58","author":"Tagney","year":"2007","journal-title":"Annu. Rev. Psychol."},{"key":"10.1016\/j.socscimed.2019.04.022_bib50","series-title":"After Austerity: Welfare State Transformation in Europe after the Great Recession","author":"Taylor-Gooby","year":"2017"},{"key":"10.1016\/j.socscimed.2019.04.022_bib51","doi-asserted-by":"crossref","first-page":"341","DOI":"10.1111\/jar.12145","article-title":"\u2018Recognized, valued and supported\u2019? The experiences of adult siblings of people with autism plus learning disability","volume":"25","author":"Tozer","year":"2015","journal-title":"J. Appl. Res. Intellect. Disabil."},{"issue":"5","key":"10.1016\/j.socscimed.2019.04.022_bib52","doi-asserted-by":"crossref","first-page":"480","DOI":"10.1111\/hsc.12034","article-title":"Continuity, commitment and context: adult siblings of people with autism plus learning disability","volume":"21","author":"Tozer","year":"2013","journal-title":"Health Soc. Care Community"},{"key":"10.1016\/j.socscimed.2019.04.022_bib53","series-title":"Moral Boundaries: A Political Argument for an Ethic of Care","author":"Tronto","year":"1993"},{"key":"10.1016\/j.socscimed.2019.04.022_bib54","series-title":"Caring Democracy: Markets, Equality and Justice","author":"Tronto","year":"2013"},{"key":"10.1016\/j.socscimed.2019.04.022_bib55","doi-asserted-by":"crossref","first-page":"1307","DOI":"10.1016\/S0277-9536(02)00508-7","article-title":"Daily geographies of caregivers: mobility, routine, scale","volume":"57","author":"Wiles","year":"2003","journal-title":"Soc. Sci. Med."}],"container-title":["Social Science & Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0277953619302229?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0277953619302229?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,3]],"date-time":"2025-10-03T15:23:59Z","timestamp":1759505039000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0277953619302229"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,6]]},"references-count":54,"alternative-id":["S0277953619302229"],"URL":"https:\/\/doi.org\/10.1016\/j.socscimed.2019.04.022","relation":{},"ISSN":["0277-9536"],"issn-type":[{"value":"0277-9536","type":"print"}],"subject":[],"published":{"date-parts":[[2019,6]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Siblings caring for siblings with Intellectual Disabilities: Naming and negotiating emotional tensions","name":"articletitle","label":"Article Title"},{"value":"Social Science & Medicine","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.socscimed.2019.04.022","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2019 Elsevier Ltd. All rights reserved.","name":"copyright","label":"Copyright"}]}}