{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,17]],"date-time":"2026-05-17T01:02:33Z","timestamp":1778979753192,"version":"3.51.4"},"reference-count":42,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2024,8,1]],"date-time":"2024-08-01T00:00:00Z","timestamp":1722470400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2024,8,1]],"date-time":"2024-08-01T00:00:00Z","timestamp":1722470400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2024,6,27]],"date-time":"2024-06-27T00:00:00Z","timestamp":1719446400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Social Science &amp; Medicine"],"published-print":{"date-parts":[[2024,8]]},"DOI":"10.1016\/j.socscimed.2024.117063","type":"journal-article","created":{"date-parts":[[2024,6,26]],"date-time":"2024-06-26T23:35:01Z","timestamp":1719444901000},"page":"117063","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":3,"special_numbering":"C","title":["Adolescents' challenging and grief-filled transitions when living with a parent with ALS: A qualitative interpretive study"],"prefix":"10.1016","volume":"354","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6878-3011","authenticated-orcid":false,"given":"Nina","family":"Malmstr\u00f6m","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joakim","family":"\u00d6hl\u00e9n","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0404-5938","authenticated-orcid":false,"given":"Birgitta","family":"Jakobsson Larsson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stefan","family":"Nilsson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ingela","family":"Nygren","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Peter","family":"M. Andersen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anneli","family":"Ozanne","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"78","reference":[{"issue":"6","key":"10.1016\/j.socscimed.2024.117063_bib1","doi-asserted-by":"crossref","first-page":"842","DOI":"10.1177\/0269216311416036","article-title":"Motor Neurone Disease family carers' experiences of caring, palliative care and bereavement: an exploratory qualitative study","volume":"26","author":"Aoun","year":"2012","journal-title":"Palliat. Med."},{"issue":"3","key":"10.1016\/j.socscimed.2024.117063_bib2","doi-asserted-by":"crossref","first-page":"1536","DOI":"10.1002\/nop2.1187","article-title":"Children and adolescents' preferences for support when living with a dying parent \u2013 an integrative review","volume":"9","author":"Bergersen","year":"2022","journal-title":"Nursing open"},{"key":"10.1016\/j.socscimed.2024.117063_bib3","doi-asserted-by":"crossref","DOI":"10.1016\/j.copsyc.2021.11.006","article-title":"Adolescent identity development in context","volume":"45","author":"Branje","year":"2022","journal-title":"Current opinion in psychology"},{"issue":"5","key":"10.1016\/j.socscimed.2024.117063_bib4","doi-asserted-by":"crossref","first-page":"293","DOI":"10.1080\/146608200300079536","article-title":"El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis","volume":"1","author":"Brooks","year":"2000","journal-title":"Amyotroph Lateral Scler Other Motor Neuron Disord"},{"issue":"9","key":"10.1016\/j.socscimed.2024.117063_bib5","doi-asserted-by":"crossref","DOI":"10.1002\/pon.3515","article-title":"Self-injury in youths who lost a parent to cancer: nationwide study of the impact of family-related and health-care-related factors","volume":"23","author":"Bylund Grenklo","year":"2014","journal-title":"Psycho Oncol."},{"key":"10.1016\/j.socscimed.2024.117063_bib6","doi-asserted-by":"crossref","first-page":"288","DOI":"10.3389\/fpsyg.2015.00288","article-title":"Impact on children of a parent with ALS: a case-control study","volume":"6","author":"Calvo","year":"2015","journal-title":"Front. Psychol."},{"issue":"1","key":"10.1016\/j.socscimed.2024.117063_bib7","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1016\/S0022-510X(99)00210-5","article-title":"The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function","volume":"169","author":"Cedarbaum","year":"1999","journal-title":"J. Neurol. Sci."},{"issue":"4","key":"10.1016\/j.socscimed.2024.117063_bib8","doi-asserted-by":"crossref","first-page":"1196","DOI":"10.1111\/scs.12938","article-title":"\u2018I have cried a lot\u2019: a qualitative study on children experiencing severe parental illness","volume":"35","author":"Faugli","year":"2021","journal-title":"Scand. J. Caring Sci."},{"issue":"1","key":"10.1016\/j.socscimed.2024.117063_bib9","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1353\/lm.2011.0180","article-title":"Reclaiming an orphan genre: the first-person narrative of illness","volume":"13","author":"Frank","year":"1994","journal-title":"Lit. Med."},{"key":"10.1016\/j.socscimed.2024.117063_bib10","doi-asserted-by":"crossref","first-page":"242","DOI":"10.1016\/j.neuroimage.2013.09.073","article-title":"The influence of puberty on subcortical brain development","volume":"88","author":"Goddings","year":"2014","journal-title":"Neuroimage"},{"issue":"12","key":"10.1016\/j.socscimed.2024.117063_bib11","doi-asserted-by":"crossref","first-page":"1227","DOI":"10.1001\/jamapsychiatry.2015.2094","article-title":"Incidence of suicide among persons who had a parent who died during their childhood: a population-based cohort study","volume":"72","author":"Guldin","year":"2015","journal-title":"JAMA Psychiatr."},{"issue":"2","key":"10.1016\/j.socscimed.2024.117063_bib12","doi-asserted-by":"crossref","first-page":"176","DOI":"10.1111\/j.1469-7610.2010.02298.x","article-title":"Young people's risk of suicide attempts in relation to parental death: a population-based register study","volume":"52","author":"Jakobsen","year":"2011","journal-title":"JCPP (J. Child Psychol. Psychiatry)"},{"key":"10.1016\/j.socscimed.2024.117063_bib13","doi-asserted-by":"crossref","DOI":"10.3389\/fpsyt.2021.807563","article-title":"Parental chronic illness, internalizing problems in young adulthood and the mediating role of adolescent attachment to parents: a prospective cohort study","volume":"12","author":"Kaasb\u00f8ll","year":"2021","journal-title":"Front. Psychiatr."},{"issue":"1","key":"10.1016\/j.socscimed.2024.117063_bib14","doi-asserted-by":"crossref","first-page":"29","DOI":"10.1007\/s40894-015-0015-7","article-title":"Unacknowledged caregivers: a scoping review of research on caregiving youth in the United States","volume":"1","author":"Kavanaugh","year":"2016","journal-title":"Adolescent research review"},{"issue":"1","key":"10.1016\/j.socscimed.2024.117063_bib15","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1080\/00981389.2017.1378284","article-title":"Feasibility of a multidisciplinary caregiving training protocol for young caregivers in families with ALS","volume":"57","author":"Kavanaugh","year":"2018","journal-title":"Soc. Work. Health Care"},{"issue":"14","key":"10.1016\/j.socscimed.2024.117063_bib16","doi-asserted-by":"crossref","first-page":"e1452","DOI":"10.1212\/WNL.0000000000009217","article-title":"US data on children and youth caregivers in amyotrophic lateral sclerosis","volume":"94","author":"Kavanaugh","year":"2020","journal-title":"Neurology"},{"issue":"7","key":"10.1016\/j.socscimed.2024.117063_bib17","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pmed.1001679","article-title":"Mortality after parental death in childhood: a nationwide cohort study from three nordic countries","volume":"11","author":"Li","year":"2014","journal-title":"PLoS Med."},{"issue":"2","key":"10.1016\/j.socscimed.2024.117063_bib18","doi-asserted-by":"crossref","first-page":"145","DOI":"10.1111\/j.1471-6712.2004.00258.x","article-title":"A phenomenological hermeneutical method for researching lived experience","volume":"18","author":"Lindseth","year":"2004","journal-title":"Scand. J. Caring Sci."},{"issue":"7\u20138","key":"10.1016\/j.socscimed.2024.117063_bib19","doi-asserted-by":"crossref","first-page":"727","DOI":"10.1080\/21678421.2023.2228348","article-title":"Living with a parent with ALS - adolescents\u2019 need for professional support from the adolescents\u2019 and the parents\u2019 perspectives","volume":"24","author":"Malmstr\u00f6m","year":"2023","journal-title":"Amyotroph. Lateral Scler. Frontotemporal. Degener."},{"issue":"9280","key":"10.1016\/j.socscimed.2024.117063_bib20","first-page":"483","article-title":"Qualitative research: standards, challenges, and guidelines","volume":"358","author":"Malterud","year":"2001","journal-title":"The Lancet (British edition)"},{"issue":"8","key":"10.1016\/j.socscimed.2024.117063_bib21","doi-asserted-by":"crossref","first-page":"795","DOI":"10.1177\/1403494812465030","article-title":"Systematic text condensation: a strategy for qualitative analysis","volume":"40","author":"Malterud","year":"2012","journal-title":"Scand. J. Publ. Health"},{"issue":"10","key":"10.1016\/j.socscimed.2024.117063_bib22","doi-asserted-by":"crossref","first-page":"1918","DOI":"10.1111\/ene.14393","article-title":"Amyotrophic lateral sclerosis: a clinical review","volume":"27","author":"Masrori","year":"2020","journal-title":"Eur. J. Neurol."},{"key":"10.1016\/j.socscimed.2024.117063_bib23","series-title":"Transitions Theory Middle Range and Situation Specific Theories in Nursing Research and Practice","author":"Meleis","year":"2010"},{"issue":"1","key":"10.1016\/j.socscimed.2024.117063_bib24","doi-asserted-by":"crossref","first-page":"12","DOI":"10.1097\/00012272-200009000-00006","article-title":"Experiencing transitions: an emerging middle-range theory","volume":"23","author":"Meleis","year":"2000","journal-title":"Adv. Nurs. Sci."},{"issue":"2","key":"10.1016\/j.socscimed.2024.117063_bib25","doi-asserted-by":"crossref","first-page":"119","DOI":"10.1037\/a0025695","article-title":"The impacts of parental loss and adverse parenting on mental health: findings from the national comorbidity survey-replication","volume":"5","author":"Nickerson","year":"2013","journal-title":"Psychological trauma"},{"key":"10.1016\/j.socscimed.2024.117063_bib26","doi-asserted-by":"crossref","DOI":"10.1177\/23333936231173566","article-title":"Empirical phenomenological inquiry: guidance in choosing between different methodologies","volume":"10","author":"\u00d6hl\u00e9n","year":"2023","journal-title":"Global qualitative nursing research"},{"issue":"6","key":"10.1016\/j.socscimed.2024.117063_bib27","doi-asserted-by":"crossref","first-page":"685","DOI":"10.1080\/13548506.2010.507773","article-title":"Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis","volume":"15","author":"Pagnini","year":"2010","journal-title":"Psychol. Health Med."},{"issue":"5","key":"10.1016\/j.socscimed.2024.117063_bib28","doi-asserted-by":"crossref","first-page":"649","DOI":"10.1097\/WCO.0000000000000862","article-title":"Cognitive and behavioural impairment in amyotrophic lateral sclerosis","volume":"33","author":"Pender","year":"2020","journal-title":"Curr. Opin. Neurol."},{"issue":"12","key":"10.1016\/j.socscimed.2024.117063_bib29","doi-asserted-by":"crossref","first-page":"1323","DOI":"10.1002\/pon.3570","article-title":"Adolescents living with a parent with advanced cancer: a review of the literature","volume":"23","author":"Phillips","year":"2014","journal-title":"Psycho Oncol."},{"issue":"3\u20134","key":"10.1016\/j.socscimed.2024.117063_bib30","doi-asserted-by":"crossref","first-page":"292","DOI":"10.3109\/21678421.2014.886699","article-title":"Life factors affecting depression and burden in amyotrophic lateral sclerosis caregivers","volume":"15","author":"Qutub","year":"2014","journal-title":"Amyotrophic lateral sclerosis and frontotemporal degeneration"},{"issue":"3","key":"10.1016\/j.socscimed.2024.117063_bib31","doi-asserted-by":"crossref","first-page":"223","DOI":"10.1016\/S2352-4642(18)30022-1","article-title":"The age of adolescence","volume":"2","author":"Sawyer","year":"2018","journal-title":"The Lancet Child & Adolescent Health"},{"issue":"3","key":"10.1016\/j.socscimed.2024.117063_bib32","doi-asserted-by":"crossref","first-page":"197","DOI":"10.1080\/074811899201046","article-title":"The dual process model of coping with bereavement: rationale and description","volume":"23","author":"Schut","year":"1999","journal-title":"Death Stud."},{"issue":"2","key":"10.1016\/j.socscimed.2024.117063_bib33","doi-asserted-by":"crossref","first-page":"209","DOI":"10.1007\/s10826-012-9570-8","article-title":"Differential outcomes of adolescents with chronically ill and healthy parents","volume":"22","author":"Sieh","year":"2013","journal-title":"J. Child Fam. Stud."},{"key":"10.1016\/j.socscimed.2024.117063_bib34","doi-asserted-by":"crossref","first-page":"180","DOI":"10.1016\/j.socscimed.2013.11.054","article-title":"Survival of offspring who experience early parental death: early life conditions and later-life mortality","volume":"119","author":"Smith","year":"2014","journal-title":"Soc. Sci. Med."},{"issue":"1","key":"10.1016\/j.socscimed.2024.117063_bib35","doi-asserted-by":"crossref","first-page":"72","DOI":"10.1186\/s40359-022-00780-1","article-title":"Parental and child adjustment to amyotrophic lateral sclerosis: transformations, struggles and needs","volume":"10","author":"Sommers-Spijkerman","year":"2022","journal-title":"BMC Psychol"},{"key":"10.1016\/j.socscimed.2024.117063_bib36","doi-asserted-by":"crossref","first-page":"e9856","DOI":"10.48101\/ujms.v129.9856","article-title":"Partly unequal receipt of healthcare in last month of life in amyotrophic lateral sclerosis: a retrospective cohort study of the Stockholm region","volume":"129","author":"Strang","year":"2024","journal-title":"Ups. J. Med. Sci."},{"issue":"4","key":"10.1016\/j.socscimed.2024.117063_bib37","doi-asserted-by":"crossref","first-page":"273","DOI":"10.2190\/OM.61.4.b","article-title":"The dual process model of coping with bereavement: a decade on","volume":"61","author":"Stroebe","year":"2010","journal-title":"Omega J. Death Dying"},{"issue":"5","key":"10.1016\/j.socscimed.2024.117063_bib38","doi-asserted-by":"crossref","first-page":"472","DOI":"10.1080\/15325024.2022.2114656","article-title":"Amyotrophic lateral sclerosis (ALS) impact on minors' life: a qualitative study with children of ALS patients in Italy","volume":"28","author":"Testoni","year":"2023","journal-title":"J. Loss Trauma"},{"issue":"14","key":"10.1016\/j.socscimed.2024.117063_bib39","doi-asserted-by":"crossref","first-page":"601","DOI":"10.1212\/WNL.0000000000009215","article-title":"Youth provide caregiving to adults with ALS: how do we support them?","volume":"94","author":"Treat","year":"2020","journal-title":"Neurology"},{"issue":"6","key":"10.1016\/j.socscimed.2024.117063_bib40","article-title":"European Academy of Neurology (EAN) guideline on the management of amyotrophic lateral sclerosis in collaboration with European Reference Network for Neuromuscular Diseases (ERN EURO\u2010NMD)","volume":"31","author":"Van Damme","year":"2024","journal-title":"Eur. J. Neurol."},{"issue":"20","key":"10.1016\/j.socscimed.2024.117063_bib41","doi-asserted-by":"crossref","first-page":"2191","DOI":"10.1001\/jama.2013.281053","article-title":"World medical association declaration of Helsinki: ethical principles for medical research involving human subjects","volume":"310","year":"2013","journal-title":"JAMA, J. Am. Med. Assoc."},{"issue":"4","key":"10.1016\/j.socscimed.2024.117063_bib42","doi-asserted-by":"crossref","first-page":"215","DOI":"10.1111\/cdep.12042","article-title":"Adolescent resilience: promotive factors that inform prevention","volume":"7","author":"Zimmerman","year":"2013","journal-title":"Child development perspectives"}],"container-title":["Social Science &amp; Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0277953624005161?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0277953624005161?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2024,10,7]],"date-time":"2024-10-07T11:17:19Z","timestamp":1728299839000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0277953624005161"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,8]]},"references-count":42,"alternative-id":["S0277953624005161"],"URL":"https:\/\/doi.org\/10.1016\/j.socscimed.2024.117063","relation":{},"ISSN":["0277-9536"],"issn-type":[{"value":"0277-9536","type":"print"}],"subject":[],"published":{"date-parts":[[2024,8]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Adolescents' challenging and grief-filled transitions when living with a parent with ALS: A qualitative interpretive study","name":"articletitle","label":"Article Title"},{"value":"Social Science & Medicine","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.socscimed.2024.117063","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2024 The Authors. Published by Elsevier Ltd.","name":"copyright","label":"Copyright"}],"article-number":"117063"}}