{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,16]],"date-time":"2026-10-16T06:26:23Z","timestamp":1792131983943,"version":"4.4.0"},"reference-count":39,"publisher":"Elsevier BV","issue":"6","license":[{"start":{"date-parts":[[2016,11,1]],"date-time":"2016-11-01T00:00:00Z","timestamp":1477958400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2016,11,1]],"date-time":"2016-11-01T00:00:00Z","timestamp":1477958400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","pediatricnursing.org","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Journal of Pediatric Nursing"],"published-print":{"date-parts":[[2016,11]]},"DOI":"10.1016\/j.pedn.2016.09.002","type":"journal-article","created":{"date-parts":[[2016,10,9]],"date-time":"2016-10-09T22:59:30Z","timestamp":1476053970000},"page":"580-597","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":49,"title":["Severe Childhood Autism: The Family Lived Experience"],"prefix":"10.1016","volume":"31","author":[{"given":"Jocelyn","family":"Bessette Gorlin","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cynthia Peden","family":"McAlpine","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ann","family":"Garwick","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth","family":"Wieling","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.pedn.2016.09.002_bb0005","series-title":"Autism spectrum disorder diagnostic criteria","article-title":"Diagnostic and statistical manual of mental disorders (DSM-5)","author":"American Psychiatric Association (APA)","year":"2013"},{"key":"10.1016\/j.pedn.2016.09.002_bb0010","first-page":"57","article-title":"The family health system as an emerging","volume":"24","author":"Anderson","year":"1992","journal-title":"IMAGE: Journal of Nursing Scholarship"},{"key":"10.1016\/j.pedn.2016.09.002_bb0015","doi-asserted-by":"crossref","first-page":"506","DOI":"10.1046\/j.1365-2648.1996.21810.x","article-title":"The family interview: Exploring the experiences of family health and well-being","volume":"24","author":"\u00c5stedt-Kurki","year":"1996","journal-title":"Journal of Advanced Nursing"},{"key":"10.1016\/j.pedn.2016.09.002_bb0020","author":"Autism Speaks"},{"key":"10.1016\/j.pedn.2016.09.002_bb0025","doi-asserted-by":"crossref","first-page":"48","DOI":"10.1007\/s10591-007-9054-y","article-title":"Qualitative research in marriage and family therapy: Who is in the interview?","volume":"30","author":"Beitin","year":"2007","journal-title":"Contemporary Family Therapy"},{"key":"10.1016\/j.pedn.2016.09.002_bb0030","doi-asserted-by":"crossref","first-page":"92","DOI":"10.1111\/j.1744-6171.2010.00228.x","article-title":"Raising an autistic child: Perspectives from Turkish mothers","volume":"23","author":"Bilgin","year":"2010","journal-title":"Journal of Child and Psychiatric Nursing"},{"key":"10.1016\/j.pedn.2016.09.002_bb0035","doi-asserted-by":"crossref","first-page":"167","DOI":"10.1002\/aur.1335","article-title":"Classification of functioning and impairment: The development of ICF core sets for autism spectrum disorder","volume":"7","author":"B\u00f6lte","year":"2014","journal-title":"Autism Research"},{"key":"10.1016\/j.pedn.2016.09.002_bb0040","doi-asserted-by":"crossref","first-page":"596","DOI":"10.1016\/j.pedn.2014.03.023","article-title":"Silver linings","volume":"29","author":"Bultas","year":"2014","journal-title":"Journal of Pediatric Nursing"},{"key":"10.1016\/j.pedn.2016.09.002_bb0045","article-title":"Prevalence of autism spectrum disorder among children aged 8years- Autism and developmental disabilities monitoring network, 11 sites, United States, 2010","author":"Centers for Disease Control and Prevention (CDC)","year":"2014","journal-title":"MMWR. Morbidity and Mortality Weekly Report"},{"key":"10.1016\/j.pedn.2016.09.002_bb0050","doi-asserted-by":"crossref","first-page":"68","DOI":"10.1177\/107484079500100105","article-title":"Hermeneutic phenomenology: An approach to understanding families","volume":"1","author":"Chesla","year":"1995","journal-title":"Journal of Family Nursing"},{"key":"10.1016\/j.pedn.2016.09.002_bb0055","doi-asserted-by":"crossref","first-page":"371","DOI":"10.1177\/1074840705281781","article-title":"Nursing science and chronic illness: Articulating suffering and possibility in family life","volume":"11","author":"Chesla","year":"2005","journal-title":"Journal of Family Nursing"},{"key":"10.1016\/j.pedn.2016.09.002_bb0060","doi-asserted-by":"crossref","first-page":"240","DOI":"10.1177\/1049732304272050","article-title":"Accommodating type 2 diabetes in the Chinese American family","volume":"15","author":"Chesla","year":"2005","journal-title":"Qualitative Health Research"},{"key":"10.1016\/j.pedn.2016.09.002_bb0065","doi-asserted-by":"crossref","first-page":"83","DOI":"10.1080\/13668250020032787","article-title":"The subjective well-being of people caring for a family member with a severe disability at home: A review","volume":"26","author":"Cummins","year":"2001","journal-title":"Journal of Intellectual and Developmental Disability"},{"key":"10.1016\/j.pedn.2016.09.002_bb0070","series-title":"Qualitative methods in family research","first-page":"3","article-title":"The fit between qualitative research and characteristics of families","author":"Daly","year":"1992"},{"key":"10.1016\/j.pedn.2016.09.002_bb0075","doi-asserted-by":"crossref","first-page":"613","DOI":"10.1177\/1363461512447139","article-title":"The discovery of autism: Indian parents' experiences caring for their child with autism spectrum disorder","volume":"49","author":"Desai","year":"2012","journal-title":"Transcultural Psychiatry"},{"key":"10.1016\/j.pedn.2016.09.002_bb0080","doi-asserted-by":"crossref","first-page":"21","DOI":"10.7748\/nr2009.04.16.3.21.c6943","article-title":"The family research interview","volume":"16","author":"Donalek","year":"2009","journal-title":"Nurse Researcher"},{"key":"10.1016\/j.pedn.2016.09.002_bb0085","series-title":"An exploration of resilience in families with a child diagnosed with autism spectrum disorder","author":"Dupont","year":"2009"},{"key":"10.1016\/j.pedn.2016.09.002_bb0090","doi-asserted-by":"crossref","first-page":"1011","DOI":"10.1111\/j.1467-9566.2009.01174.x","article-title":"Exploring stigma: Medical knowledge and the stigmatization of parents of children diagnosed with autism spectrum disorder","volume":"31","author":"Farrugia","year":"2009","journal-title":"Sociology of Health and Illness"},{"key":"10.1016\/j.pedn.2016.09.002_bb0095","doi-asserted-by":"crossref","first-page":"199","DOI":"10.1002\/aur.1442","article-title":"Family quality of life and ASD: The role of child adaptive functioning and behavior problems","volume":"8","author":"Gardiner","year":"2015","journal-title":"Autism Research"},{"key":"10.1016\/j.pedn.2016.09.002_bb0100","doi-asserted-by":"crossref","first-page":"207","DOI":"10.1097\/00006199-200405000-00008","article-title":"Lifelines: A life history methodology","volume":"53","author":"Gramling","year":"2004","journal-title":"Nursing Research"},{"key":"10.1016\/j.pedn.2016.09.002_bb0105","doi-asserted-by":"crossref","first-page":"143","DOI":"10.1177\/1074840706287275","article-title":"Building a new world habits and practices of healing following the death of a child","volume":"12","author":"Gudmundsdottir","year":"2006","journal-title":"Journal of Family Nursing"},{"key":"10.1016\/j.pedn.2016.09.002_bb0110","first-page":"233","article-title":"The lived experience of parenting a child with autism in a rural area; Making the invisible, visible","volume":"39","author":"Hoogsteen","year":"2013","journal-title":"Pediatric Nursing"},{"key":"10.1016\/j.pedn.2016.09.002_bb0115","series-title":"Autism spectrum disorders and the family: a qualitative study","author":"Kent","year":"2011"},{"key":"10.1016\/j.pedn.2016.09.002_bb0120","doi-asserted-by":"crossref","first-page":"16","DOI":"10.3109\/01942630903297227","article-title":"Ever vigilant: Maternal support of participation in daily life for boys with autism","volume":"30","author":"Larson","year":"2010","journal-title":"Physical and Occupational Therapy in Pediatrics"},{"key":"10.1016\/j.pedn.2016.09.002_bb0125","series-title":"The lived experience of parents of a preschool age, moderately mentally retarded autistic child","author":"Lendenmann","year":"2010"},{"key":"10.1016\/j.pedn.2016.09.002_bb0130","doi-asserted-by":"crossref","first-page":"222","DOI":"10.1177\/1059840509334365","article-title":"Southeast Asian parents raising a child with autism: A qualitative investigation of coping styles","volume":"25","author":"Luong","year":"2009","journal-title":"The Journal of School Nursing"},{"key":"10.1016\/j.pedn.2016.09.002_bb0135","doi-asserted-by":"crossref","first-page":"206","DOI":"10.1016\/j.pedn.2011.03.013","article-title":"Coping with autism: A journey toward adaptation","volume":"27","author":"Lutz","year":"2012","journal-title":"Journal of Pediatric Nursing"},{"key":"10.1016\/j.pedn.2016.09.002_bb0140","doi-asserted-by":"crossref","first-page":"311","DOI":"10.1080\/15332985.2012.664487","article-title":"Transparency, hope, and empowerment: A model for partnering with parents of a child with autism spectrum disorder at diagnosis and beyond","volume":"10","author":"Mulligan","year":"2012","journal-title":"Social Work in Mental Health"},{"key":"10.1016\/j.pedn.2016.09.002_bb0145","series-title":"Eight theories of religion","author":"Pals","year":"2006"},{"key":"10.1016\/j.pedn.2016.09.002_bb0150","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1080\/13668250802690930","article-title":"Caring for an individual with autism disorder: A qualitative analysis","volume":"34","author":"Phelps","year":"2009","journal-title":"Journal of Intellectual and Developmental Disability"},{"key":"10.1016\/j.pedn.2016.09.002_bb0155","doi-asserted-by":"crossref","first-page":"313","DOI":"10.1352\/0047-6765(2003)41<313:FQOLAQ>2.0.CO;2","article-title":"Family quality of life outcomes: A qualitative inquiry launching a long-term research program","volume":"41","author":"Poston","year":"2003","journal-title":"Mental Retardation"},{"key":"10.1016\/j.pedn.2016.09.002_bb0160","doi-asserted-by":"crossref","first-page":"68","DOI":"10.1097\/DBP.0000000000000017","article-title":"Diagnostic and statistical manual of mental disorders: The solution or the problem?","volume":"35","author":"Reiff","year":"2014","journal-title":"Journal of Developmental and Behavioral Pediatrics"},{"key":"10.1016\/j.pedn.2016.09.002_bb0165","doi-asserted-by":"crossref","first-page":"294","DOI":"10.3109\/13668250.2012.736614","article-title":"The experiences of mothers of children with autism: Managing multiple roles","volume":"37","author":"Safe","year":"2012","journal-title":"Journal of Intellectual and Developmental Disability"},{"key":"10.1016\/j.pedn.2016.09.002_bb0170","doi-asserted-by":"crossref","first-page":"179","DOI":"10.1002\/nur.4770180211","article-title":"Sample size in qualitative research","volume":"18","author":"Sandelowski","year":"1995","journal-title":"Research in Nursing & Health"},{"key":"10.1016\/j.pedn.2016.09.002_bb0175","doi-asserted-by":"crossref","first-page":"373","DOI":"10.1177\/1362361310386505","article-title":"The everyday routines of families of children with autism: Examining the impact of sensory processing difficulties on the family","volume":"15","author":"Schaaf","year":"2011","journal-title":"Autism"},{"key":"10.1016\/j.pedn.2016.09.002_bb0180","series-title":"Researching lived experience: human science for an action sensitive pedagogy","author":"Van Manen","year":"1997"},{"key":"10.1016\/j.pedn.2016.09.002_bb0185","series-title":"Phenomenology of practice: meaning-giving methods in phenomenological research and writing","author":"Van Manen","year":"2014"},{"key":"10.1016\/j.pedn.2016.09.002_bb0190","doi-asserted-by":"crossref","first-page":"543","DOI":"10.5014\/ajot.58.5.543","article-title":"The everyday occupation of families with children with autism","volume":"58","author":"Werner DeGrace","year":"2004","journal-title":"The American Journal of Occupational Therapy"},{"key":"10.1016\/j.pedn.2016.09.002_bb0195","series-title":"ICF: international classification of functioning","author":"World Health Organization","year":"2001"}],"container-title":["Journal of Pediatric Nursing"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0882596316302792?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0882596316302792?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T16:16:09Z","timestamp":1760112969000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0882596316302792"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016,11]]},"references-count":39,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2016,11]]}},"alternative-id":["S0882596316302792"],"URL":"https:\/\/doi.org\/10.1016\/j.pedn.2016.09.002","relation":{},"ISSN":["0882-5963"],"issn-type":[{"value":"0882-5963","type":"print"}],"subject":[],"published":{"date-parts":[[2016,11]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Severe Childhood Autism: The Family Lived Experience","name":"articletitle","label":"Article Title"},{"value":"Journal of Pediatric Nursing","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.pedn.2016.09.002","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2016 Elsevier Inc. All rights reserved.","name":"copyright","label":"Copyright"}]}}