{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,2]],"date-time":"2026-05-02T06:59:56Z","timestamp":1777705196336,"version":"3.51.4"},"reference-count":45,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2020,6,1]],"date-time":"2020-06-01T00:00:00Z","timestamp":1590969600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2020,6,1]],"date-time":"2020-06-01T00:00:00Z","timestamp":1590969600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"}],"funder":[{"name":"Center of Telemedicine"},{"DOI":"10.13039\/501100005275","name":"Capital Region of Denmark","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100005275","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Copenhagen Center for Health Technology"}],"content-domain":{"domain":["elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Social Science & Medicine"],"published-print":{"date-parts":[[2020,6]]},"DOI":"10.1016\/j.socscimed.2020.113022","type":"journal-article","created":{"date-parts":[[2020,5,7]],"date-time":"2020-05-07T11:47:08Z","timestamp":1588852028000},"page":"113022","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":19,"special_numbering":"C","title":["The socio-material self-care practices of children living with hemophilia or juvenile idiopathic arthritis in Denmark"],"prefix":"10.1016","volume":"255","author":[{"given":"C.M.","family":"Bagge-Petersen","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"M.","family":"Skovdal","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"H.","family":"Langstrup","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"78","reference":[{"key":"10.1016\/j.socscimed.2020.113022_bib1","series-title":"Shaping Technology\/Building Society","article-title":"The de-scription of technical objects","author":"Akrich","year":"1992"},{"key":"10.1016\/j.socscimed.2020.113022_bib2","article-title":"A summary of a convenient vocabulary for the semiotics of human and nonhuman assemblies","author":"Akrich","year":"1992","journal-title":"Shap. Technol. Soc. Stud. Sociotechnical Chang."},{"key":"10.1016\/j.socscimed.2020.113022_bib3","doi-asserted-by":"crossref","DOI":"10.1177\/146879410100100307","article-title":"Thematic networks: an analytic tool for qualitative research","author":"Attride-Stirling","year":"2001","journal-title":"Qual. Res."},{"key":"10.1016\/j.socscimed.2020.113022_bib4","series-title":"bloderforeningen.dk.","author":"Bl\u00f8derforeningen","year":"2019"},{"key":"10.1016\/j.socscimed.2020.113022_bib5","doi-asserted-by":"crossref","first-page":"311","DOI":"10.1080\/096382899297576","article-title":"Stress, coping, and adjustment in children with a chronic disease: a review of the literature","volume":"21","author":"Boekaerts","year":"1999","journal-title":"Disabil. Rehabil."},{"key":"10.1016\/j.socscimed.2020.113022_bib6","doi-asserted-by":"crossref","DOI":"10.1111\/cch.12206","article-title":"Journeys of adjustment: the experiences of adolescents living with juvenile idiopathic arthritis","author":"Cartwright","year":"2015","journal-title":"Child Care Health Dev."},{"key":"10.1016\/j.socscimed.2020.113022_bib7","series-title":"The Oxford Handbook of the Development of Imagination","article-title":"Imagination and coping with chronic illness","author":"Clark","year":"2013"},{"key":"10.1016\/j.socscimed.2020.113022_bib8","doi-asserted-by":"crossref","DOI":"10.1093\/jpepsy\/jst049","article-title":"Parenting stress among caregivers of children with chronic illness: a systematic review","author":"Cousino","year":"2013","journal-title":"J. Pediatr. Psychol."},{"key":"10.1016\/j.socscimed.2020.113022_bib9","article-title":"Peer to peer mentoring programs designed for specific life stages","author":"Crawford","year":"2010","journal-title":"Haemophilia"},{"key":"10.1016\/j.socscimed.2020.113022_bib10","doi-asserted-by":"crossref","DOI":"10.1136\/adc.2010.202473","article-title":"Improving the transition between paediatric and adult healthcare: a systematic review","author":"Crowley","year":"2011","journal-title":"Arch. Dis. Child."},{"key":"10.1016\/j.socscimed.2020.113022_bib11","doi-asserted-by":"crossref","DOI":"10.1080\/02668734.2012.732103","article-title":"The onset of a chronic disease as a traumatic psychic experience: a psychodynamic survey on type 1 diabetes in young patients","author":"D'Alberton","year":"2012","journal-title":"Psychoanal. Psychother."},{"key":"10.1016\/j.socscimed.2020.113022_bib12","doi-asserted-by":"crossref","DOI":"10.3384\/cu.2000.1525.124513","article-title":"Medication as infrastructure: decentring self-care","author":"Danholt","year":"2012","journal-title":"Cult. Unbound J. Curr. Cult. Res"},{"key":"10.1016\/j.socscimed.2020.113022_bib13","series-title":"Purity and Danger: an Analysis of Concepts of Pollution and Taboo","author":"Douglas","year":"2003"},{"key":"10.1016\/j.socscimed.2020.113022_bib14","series-title":"Understanding Young Adults' Online Engagement and Health Experiences in the Age of Social Media: Exploring Diabetes and Common Mental Health Disorders","author":"Fergie","year":"2015"},{"key":"10.1016\/j.socscimed.2020.113022_bib15","series-title":"gigtforeningen.dk","author":"Gigtforeningen","year":"2019"},{"key":"10.1016\/j.socscimed.2020.113022_bib16","series-title":"Spel in Psychotherapie","author":"Groothoff","year":"2009"},{"key":"10.1016\/j.socscimed.2020.113022_bib17","doi-asserted-by":"crossref","DOI":"10.1016\/j.jadohealth.2013.08.009","article-title":"Self-reported barriers to medication adherence among chronically ill adolescents: a systematic review","author":"Hangh\u00f8j","year":"2014","journal-title":"J. Adolesc. Health"},{"key":"10.1016\/j.socscimed.2020.113022_bib18","doi-asserted-by":"crossref","DOI":"10.1080\/14733280601005518","article-title":"Not just growing up, but going on: materials, spacings, bodies, situations","author":"Horton","year":"2006","journal-title":"Child Geogr."},{"key":"10.1016\/j.socscimed.2020.113022_bib19","doi-asserted-by":"crossref","DOI":"10.1093\/jpepsy\/jsj054","article-title":"An integrative model of pediatric medical traumatic stress","author":"Kazak","year":"2006","journal-title":"J. Pediatr. Psychol."},{"key":"10.1016\/j.socscimed.2020.113022_bib20","doi-asserted-by":"crossref","DOI":"10.2307\/1602715","article-title":"Children in self-care","author":"Kerrebrock","year":"1999","journal-title":"Future Child."},{"key":"10.1016\/j.socscimed.2020.113022_bib21","doi-asserted-by":"crossref","DOI":"10.1111\/1467-9566.12013","article-title":"Chronic care infrastructures and the home","author":"Langstrup","year":"2013","journal-title":"Sociol. Health Illness"},{"key":"10.1016\/j.socscimed.2020.113022_bib22","series-title":"Home Is where the Heart Stopped: Panopticism, Chronic Disease, and the Domestication of Assistive Technology","author":"Laviolette","year":"2007"},{"key":"10.1016\/j.socscimed.2020.113022_bib23","series-title":"Reliability, Validity and Evaluation of the Haemophilia Coping and Perception Test","author":"Limperg","year":"2015"},{"key":"10.1016\/j.socscimed.2020.113022_bib24","doi-asserted-by":"crossref","DOI":"10.1111\/j.1365-2516.2006.01192.x","article-title":"Compliance with treatment and understanding of own disease in patients with severe and moderate haemophilia","author":"Lindvall","year":"2006","journal-title":"Haemophilia"},{"key":"10.1016\/j.socscimed.2020.113022_bib25","doi-asserted-by":"crossref","DOI":"10.1207\/S15324796ABM2601_01","article-title":"Self-management education: history, definition, outcomes, and mechanisms","author":"Lorig","year":"2003","journal-title":"Ann. Behav. Med."},{"key":"10.1016\/j.socscimed.2020.113022_bib26","doi-asserted-by":"crossref","DOI":"10.1111\/cch.12475","article-title":"Understanding the school experiences of children and adolescents with serious chronic illness: a systematic meta-review","author":"Lum","year":"2017","journal-title":"Child Care Health Dev."},{"key":"10.1016\/j.socscimed.2020.113022_bib27","doi-asserted-by":"crossref","DOI":"10.1111\/1467-9566.12675","article-title":"Beyond the realist turn: a socio-material analysis of heart failure self-care","author":"McDougall","year":"2018","journal-title":"Sociol. Health Illness"},{"key":"10.1016\/j.socscimed.2020.113022_bib28","doi-asserted-by":"crossref","DOI":"10.1542\/peds.2013-1451","article-title":"Medication adherence and health care utilization in pediatric chronic illness: a systematic review","author":"McGrady","year":"2013","journal-title":"Pediatrics"},{"key":"10.1016\/j.socscimed.2020.113022_bib29","first-page":"73","article-title":"Care in practice. On normativity, concepts, and boundaries","volume":"2","author":"Mol","year":"2010","journal-title":"TECNOSCIENZA Italy J. Sci. Technol. Stud."},{"key":"10.1016\/j.socscimed.2020.113022_bib30","series-title":"Care in Practice: on Tinkering in Clinics, Homes and Farms","author":"Mol","year":"2010"},{"key":"10.1016\/j.socscimed.2020.113022_bib31","doi-asserted-by":"crossref","DOI":"10.1111\/1467-9566.12301","article-title":"Chronic illness as biographical contingency? Young people's experiences of asthma","author":"Monaghan","year":"2015","journal-title":"Sociol. Health Illness"},{"key":"10.1016\/j.socscimed.2020.113022_bib32","doi-asserted-by":"crossref","DOI":"10.1002\/acr.22710","article-title":"Prevalence of severe fatigue among adolescents with pediatric rheumatic diseases","author":"Nijhof","year":"2016","journal-title":"Arthritis Care Res."},{"key":"10.1016\/j.socscimed.2020.113022_bib33","first-page":"177","article-title":"Achieving independence: providing patients with the tools to manage their care","volume":"20","author":"Paradi","year":"2014","journal-title":"Haemophilia"},{"key":"10.1016\/j.socscimed.2020.113022_bib34","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1080\/09575140601135072","article-title":"Liking to be liked: imitation, familiarity and pedagogy in the first years of life","volume":"27","author":"Parker-Rees","year":"2007","journal-title":"Early Years"},{"key":"10.1016\/j.socscimed.2020.113022_bib35","article-title":"Systematic review: bullying involvement of children with and without chronic physical illness and\/or physical\/sensory disability-a meta-analytic comparison with healthy\/nondisabled peers","author":"Pinquart","year":"2017","journal-title":"J. Pediatr. Psychol."},{"key":"10.1016\/j.socscimed.2020.113022_bib36","doi-asserted-by":"crossref","DOI":"10.1111\/j.1467-9566.2010.01293.x","article-title":"Innovation and evaluation: taming and unleashing telecare technology","author":"Pols","year":"2011","journal-title":"Sociol. Health Illness"},{"key":"10.1016\/j.socscimed.2020.113022_bib37","series-title":"On the Closeness of Technology","article-title":"Care at a distance","author":"Pols","year":"2012"},{"key":"10.1016\/j.socscimed.2020.113022_bib38","doi-asserted-by":"crossref","DOI":"10.1111\/1467-9566.ep10934726","article-title":"Actor-network theory, technology and medical sociology: an illustrative analysis of the metered dose inhaler","author":"Prout","year":"1996","journal-title":"Sociol. Health Illness"},{"key":"10.1016\/j.socscimed.2020.113022_bib39","series-title":"Constructing and Reconstructing Childhood","first-page":"6","article-title":"A new paradigm for the sociology of childhood?: provenance, promise and problems","author":"Prout","year":"2015"},{"key":"10.1016\/j.socscimed.2020.113022_bib40","doi-asserted-by":"crossref","DOI":"10.1515\/ijamh-2013-0512","article-title":"A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness","author":"Stinson","year":"2014","journal-title":"Int. J. Adolesc. Med. Health"},{"key":"10.1016\/j.socscimed.2020.113022_bib41","article-title":"Digital care: agency and temporality in young people's use of health apps","author":"Trnka","year":"2016","journal-title":"Eng. Science. Tech. Soc."},{"key":"10.1016\/j.socscimed.2020.113022_bib42","doi-asserted-by":"crossref","DOI":"10.1111\/1467-9566.12302","article-title":"Shining trinkets and unkempt gardens: on the materiality of care","volume":"37","author":"van Hout","year":"2015","journal-title":"Sociol. Health Illness"},{"key":"10.1016\/j.socscimed.2020.113022_bib43","article-title":"Understanding young peoples' experience of chronic illness: a systematic review","author":"Venning","year":"2008","journal-title":"Int. J. Evid. Base. Healthc."},{"key":"10.1016\/j.socscimed.2020.113022_bib44","doi-asserted-by":"crossref","DOI":"10.1186\/1753-2000-7-12","article-title":"Health-related quality of life, anxiety and depression in young adults with disability benefits due to childhood-onset somatic conditions","author":"Verhoof","year":"2013","journal-title":"Child Adolesc. Psychiatr. Ment. Health"},{"key":"10.1016\/j.socscimed.2020.113022_bib45","doi-asserted-by":"crossref","DOI":"10.1023\/A:1009995018677","article-title":"Managing one's body using self-management techniques: practicing autonomy","author":"Willems","year":"2000","journal-title":"Theor. Med. Bioeth."}],"container-title":["Social Science & Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0277953620302410?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0277953620302410?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,3]],"date-time":"2025-10-03T15:31:08Z","timestamp":1759505468000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0277953620302410"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,6]]},"references-count":45,"alternative-id":["S0277953620302410"],"URL":"https:\/\/doi.org\/10.1016\/j.socscimed.2020.113022","relation":{},"ISSN":["0277-9536"],"issn-type":[{"value":"0277-9536","type":"print"}],"subject":[],"published":{"date-parts":[[2020,6]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"The socio-material self-care practices of children living with hemophilia or juvenile idiopathic arthritis in Denmark","name":"articletitle","label":"Article Title"},{"value":"Social Science & Medicine","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.socscimed.2020.113022","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2020 Elsevier Ltd. All rights reserved.","name":"copyright","label":"Copyright"}],"article-number":"113022"}}