{"id":"https://openalex.org/W2579409834","doi":"https://doi.org/10.1097/dbp.0000000000000385","title":"Qualitative Analysis of Parental Observations on Quality of Life in Australian Children with Down Syndrome","display_name":"Qualitative Analysis of Parental Observations on Quality of Life in Australian Children with Down Syndrome","publication_year":2017,"publication_date":"2017-01-13","ids":{"openalex":"https://openalex.org/W2579409834","doi":"https://doi.org/10.1097/dbp.0000000000000385","mag":"2579409834","pmid":"https://pubmed.ncbi.nlm.nih.gov/28092296","pmcid":"https://www.ncbi.nlm.nih.gov/pmc/articles/5285501"},"language":"en","primary_location":{"id":"doi:10.1097/dbp.0000000000000385","doi":"https://doi.org/10.1097/dbp.0000000000000385","is_oa":false,"landing_page_url":"https://doi.org/10.1097/dbp.0000000000000385","pdf_url":null,"source":{"id":"https://openalex.org/S116305490","display_name":"Journal of Developmental & Behavioral Pediatrics","issn_l":"0196-206X","issn":["0196-206X","1536-7312"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","doyens","erih-plus","jufo-1","medline","norway-1","poland-70","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310315671","host_organization_name":"Lippincott Williams & Wilkins","host_organization_lineage":["https://openalex.org/P4310315671","https://openalex.org/P4310318547"],"host_organization_lineage_names":["Lippincott Williams & Wilkins","Wolters Kluwer"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of Developmental &amp; Behavioral Pediatrics","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://research-repository.uwa.edu.au/en/publications/a7ad4137-fcea-454e-9240-846eb08eedbc","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5041409724","display_name":"Nada Murphy","orcid":"https://orcid.org/0000-0002-7078-4619","observed_orcids":["https://orcid.org/0000-0002-7078-4619"]},"institutions":[{"id":"https://openalex.org/I175234967","display_name":"The Kids Research Institute Australia","ror":"https://ror.org/01dbmzx78","country_code":"AU","type":"nonprofit","lineage":["https://openalex.org/I175234967"]},{"id":"https://openalex.org/I177877127","display_name":"The University of Western Australia","ror":"https://ror.org/047272k79","country_code":"AU","type":"education","lineage":["https://openalex.org/I177877127"]}],"countries":["AU"],"is_corresponding":true,"raw_author_name":"Nada Murphy","raw_affiliation_strings":["Telethon Kids Institute, The University of Western Australia, Perth, Western Australia, Australia;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Telethon Kids Institute, The University of Western Australia, Perth, Western Australia, Australia;","institution_ids":["https://openalex.org/I175234967","https://openalex.org/I177877127"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5031819783","display_name":"Amy Epstein","orcid":"https://orcid.org/0000-0003-4441-0901","observed_orcids":["https://orcid.org/0000-0003-4441-0901"]},"institutions":[{"id":"https://openalex.org/I175234967","display_name":"The Kids Research Institute Australia","ror":"https://ror.org/01dbmzx78","country_code":"AU","type":"nonprofit","lineage":["https://openalex.org/I175234967"]},{"id":"https://openalex.org/I177877127","display_name":"The University of Western Australia","ror":"https://ror.org/047272k79","country_code":"AU","type":"education","lineage":["https://openalex.org/I177877127"]}],"countries":["AU"],"is_corresponding":true,"raw_author_name":"Amy Epstein","raw_affiliation_strings":["Telethon Kids Institute, The University of Western Australia, Perth, Western Australia, Australia;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Telethon Kids Institute, The University of Western Australia, Perth, Western Australia, Australia;","institution_ids":["https://openalex.org/I175234967","https://openalex.org/I177877127"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5062515759","display_name":"Helen Leonard","orcid":"https://orcid.org/0000-0001-6405-5834","observed_orcids":["https://orcid.org/0000-0001-6405-5834","https://orcid.org/0000-0002-3733-5678"]},"institutions":[{"id":"https://openalex.org/I175234967","display_name":"The Kids Research Institute Australia","ror":"https://ror.org/01dbmzx78","country_code":"AU","type":"nonprofit","lineage":["https://openalex.org/I175234967"]},{"id":"https://openalex.org/I177877127","display_name":"The University of Western Australia","ror":"https://ror.org/047272k79","country_code":"AU","type":"education","lineage":["https://openalex.org/I177877127"]}],"countries":["AU"],"is_corresponding":true,"raw_author_name":"Helen Leonard","raw_affiliation_strings":["Telethon Kids Institute, The University of Western Australia, Perth, Western Australia, Australia;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Telethon Kids Institute, The University of Western Australia, Perth, Western Australia, Australia;","institution_ids":["https://openalex.org/I175234967","https://openalex.org/I177877127"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5089957809","display_name":"Elise C. Davis","orcid":"https://orcid.org/0000-0002-5076-2869","observed_orcids":["https://orcid.org/0000-0002-5076-2869"]},"institutions":[{"id":"https://openalex.org/I165779595","display_name":"The University of Melbourne","ror":"https://ror.org/01ej9dk98","country_code":"AU","type":"education","lineage":["https://openalex.org/I165779595"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"Elise Davis","raw_affiliation_strings":["The Jack Brockhoff Child Health and Wellbeing Program, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, Victoria, Australia;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"The Jack Brockhoff Child Health and Wellbeing Program, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, Victoria, Australia;","institution_ids":["https://openalex.org/I165779595"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5037576805","display_name":"Dinah Susan Reddihough","orcid":"https://orcid.org/0000-0003-3634-7906","observed_orcids":["https://orcid.org/0000-0003-3634-7906"]},"institutions":[{"id":"https://openalex.org/I1321649718","display_name":"Royal Children's Hospital","ror":"https://ror.org/02rktxt32","country_code":"AU","type":"healthcare","lineage":["https://openalex.org/I1321649718"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"Dinah Reddihough","raw_affiliation_strings":["Department of Developmental Medicine, Royal Children's Hospital, Melbourne, Victoria, Australia;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Developmental Medicine, Royal Children's Hospital, Melbourne, Victoria, Australia;","institution_ids":["https://openalex.org/I1321649718"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5014418949","display_name":"Andrew Whitehouse","orcid":"https://orcid.org/0000-0001-8722-1575","observed_orcids":["https://orcid.org/0000-0001-8722-1575"]},"institutions":[{"id":"https://openalex.org/I175234967","display_name":"The Kids Research Institute Australia","ror":"https://ror.org/01dbmzx78","country_code":"AU","type":"nonprofit","lineage":["https://openalex.org/I175234967"]},{"id":"https://openalex.org/I177877127","display_name":"The University of Western Australia","ror":"https://ror.org/047272k79","country_code":"AU","type":"education","lineage":["https://openalex.org/I177877127"]}],"countries":["AU"],"is_corresponding":true,"raw_author_name":"Andrew Whitehouse","raw_affiliation_strings":["Telethon Kids Institute, The University of Western Australia, Perth, Western Australia, Australia;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Telethon Kids Institute, The University of Western Australia, Perth, Western Australia, Australia;","institution_ids":["https://openalex.org/I175234967","https://openalex.org/I177877127"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5086757090","display_name":"Peter A. Jacoby","orcid":"https://orcid.org/0000-0001-5092-7697","observed_orcids":["https://orcid.org/0000-0001-5092-7697"]},"institutions":[{"id":"https://openalex.org/I175234967","display_name":"The Kids Research Institute Australia","ror":"https://ror.org/01dbmzx78","country_code":"AU","type":"nonprofit","lineage":["https://openalex.org/I175234967"]},{"id":"https://openalex.org/I177877127","display_name":"The University of Western Australia","ror":"https://ror.org/047272k79","country_code":"AU","type":"education","lineage":["https://openalex.org/I177877127"]}],"countries":["AU"],"is_corresponding":true,"raw_author_name":"Peter Jacoby","raw_affiliation_strings":["Telethon Kids Institute, The University of Western Australia, Perth, Western Australia, Australia;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Telethon Kids Institute, The University of Western Australia, Perth, Western Australia, Australia;","institution_ids":["https://openalex.org/I175234967","https://openalex.org/I177877127"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5103220583","display_name":"Jenny Bourke","orcid":"https://orcid.org/0000-0002-1582-805X","observed_orcids":["https://orcid.org/0000-0002-1582-805X"]},"institutions":[{"id":"https://openalex.org/I175234967","display_name":"The Kids Research Institute Australia","ror":"https://ror.org/01dbmzx78","country_code":"AU","type":"nonprofit","lineage":["https://openalex.org/I175234967"]},{"id":"https://openalex.org/I177877127","display_name":"The University of Western Australia","ror":"https://ror.org/047272k79","country_code":"AU","type":"education","lineage":["https://openalex.org/I177877127"]}],"countries":["AU"],"is_corresponding":true,"raw_author_name":"Jenny Bourke","raw_affiliation_strings":["Telethon Kids Institute, The University of Western Australia, Perth, Western Australia, Australia;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Telethon Kids Institute, The University of Western Australia, Perth, Western Australia, Australia;","institution_ids":["https://openalex.org/I175234967","https://openalex.org/I177877127"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5036875819","display_name":"Katrina Jane Williams","orcid":"https://orcid.org/0000-0002-1686-4458","observed_orcids":["https://orcid.org/0000-0002-1686-4458"]},"institutions":[{"id":"https://openalex.org/I1321649718","display_name":"Royal Children's Hospital","ror":"https://ror.org/02rktxt32","country_code":"AU","type":"healthcare","lineage":["https://openalex.org/I1321649718"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"Katrina Williams","raw_affiliation_strings":["Department of Developmental Medicine, Royal Children's Hospital, Melbourne, Victoria, Australia;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Developmental Medicine, Royal Children's Hospital, Melbourne, Victoria, Australia;","institution_ids":["https://openalex.org/I1321649718"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5045593878","display_name":"Jenny Anne Downs","orcid":"https://orcid.org/0000-0001-7358-9037","observed_orcids":["https://orcid.org/0000-0001-7358-9037"]},"institutions":[{"id":"https://openalex.org/I175234967","display_name":"The Kids Research Institute Australia","ror":"https://ror.org/01dbmzx78","country_code":"AU","type":"nonprofit","lineage":["https://openalex.org/I175234967"]},{"id":"https://openalex.org/I177877127","display_name":"The University of Western Australia","ror":"https://ror.org/047272k79","country_code":"AU","type":"education","lineage":["https://openalex.org/I177877127"]},{"id":"https://openalex.org/I205640436","display_name":"Curtin University","ror":"https://ror.org/02n415q13","country_code":"AU","type":"education","lineage":["https://openalex.org/I205640436"]}],"countries":["AU"],"is_corresponding":true,"raw_author_name":"Jenny Downs","raw_affiliation_strings":["School of Physiotherapy and Exercise Science, Curtin University, Perth, Western Australia, Australia","Telethon Kids Institute, The University of Western Australia, Perth, Western Australia, Australia;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"School of Physiotherapy and Exercise Science, Curtin University, Perth, Western Australia, Australia","institution_ids":["https://openalex.org/I205640436"]},{"raw_affiliation_string":"Telethon Kids Institute, The University of Western Australia, Perth, Western Australia, Australia;","institution_ids":["https://openalex.org/I175234967","https://openalex.org/I177877127"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":5,"corresponding_author_ids":["https://openalex.org/A5014418949","https://openalex.org/A5031819783","https://openalex.org/A5041409724","https://openalex.org/A5045593878","https://openalex.org/A5062515759","https://openalex.org/A5086757090","https://openalex.org/A5103220583"],"corresponding_institution_ids":["https://openalex.org/I175234967","https://openalex.org/I177877127","https://openalex.org/I205640436"],"apc_list":null,"apc_paid":null,"fwci":4.4334,"has_fulltext":false,"cited_by_count":53,"citation_normalized_percentile":{"value":0.94682393,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":96,"max":99},"biblio":{"volume":"38","issue":"2","first_page":"161","last_page":"168"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11015","display_name":"Down syndrome and intellectual disability research","score":0.9984999895095825,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T11015","display_name":"Down syndrome and intellectual disability research","score":0.9984999895095825,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T11632","display_name":"Family and Disability Support Research","score":0.0015999999595806003,"subfield":{"id":"https://openalex.org/subfields/3203","display_name":"Clinical Psychology"},"field":{"id":"https://openalex.org/fields/32","display_name":"Psychology"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T11097","display_name":"Cerebral Palsy and Movement Disorders","score":0.0,"subfield":{"id":"https://openalex.org/subfields/2738","display_name":"Psychiatry and Mental health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/down-syndrome","display_name":"Down syndrome","score":1.0},{"id":"https://openalex.org/keywords/quality-of-life","display_name":"quality of life","score":0.9829999804496765},{"id":"https://openalex.org/keywords/children-with-down-syndrome","display_name":"children with Down syndrome","score":0.6349999904632568},{"id":"https://openalex.org/keywords/parental-perceptions","display_name":"parental attitudes","score":0.722000002861023},{"id":"https://openalex.org/keywords/quality-of-life-domains","display_name":"quality of life domains","score":0.7450000047683716},{"id":"https://openalex.org/keywords/childhood-and-adolescence","display_name":"childhood and adolescence","score":0.8100000023841858},{"id":"https://openalex.org/keywords/social-connection","display_name":"social connectedness","score":0.6539999842643738},{"id":"https://openalex.org/keywords/autonomy-and-independence","display_name":"autonomy and independence","score":0.9010000228881836},{"id":"https://openalex.org/keywords/access-to-services","display_name":"access to services","score":0.8220000267028809},{"id":"https://openalex.org/keywords/exercise","display_name":"physical activity","score":0.39500001072883606},{"id":"https://openalex.org/keywords/communication","display_name":"communication","score":0.5799999833106995}],"concepts":[{"id":"https://openalex.org/C201943243","wikidata":"https://www.wikidata.org/wiki/Q7551008","display_name":"Social connectedness","level":2,"score":0.7260735034942627},{"id":"https://openalex.org/C138496976","wikidata":"https://www.wikidata.org/wiki/Q175002","display_name":"Developmental psychology","level":1,"score":0.593012809753418},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.5553111433982849},{"id":"https://openalex.org/C74196892","wikidata":"https://www.wikidata.org/wiki/Q7781188","display_name":"Thematic analysis","level":3,"score":0.5486680269241333},{"id":"https://openalex.org/C65414064","wikidata":"https://www.wikidata.org/wiki/Q484105","display_name":"Autonomy","level":2,"score":0.5230006575584412},{"id":"https://openalex.org/C190248442","wikidata":"https://www.wikidata.org/wiki/Q839486","display_name":"Qualitative research","level":2,"score":0.5009167194366455},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.49932003021240234},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.3391050696372986},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.2689622640609741},{"id":"https://openalex.org/C77805123","wikidata":"https://www.wikidata.org/wiki/Q161272","display_name":"Social psychology","level":1,"score":0.18918338418006897},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.0},{"id":"https://openalex.org/C542102704","wikidata":"https://www.wikidata.org/wiki/Q183257","display_name":"Psychotherapist","level":1,"score":0.0},{"id":"https://openalex.org/C36289849","wikidata":"https://www.wikidata.org/wiki/Q34749","display_name":"Social science","level":1,"score":0.0},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.0},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.0}],"mesh":[{"descriptor_ui":"D000293","descriptor_name":"Adolescent","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D001315","descriptor_name":"Australia","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002648","descriptor_name":"Child","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D004314","descriptor_name":"Down Syndrome","qualifier_ui":"Q000503","qualifier_name":"physiopathology","is_major_topic":true},{"descriptor_ui":"D004314","descriptor_name":"Down Syndrome","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D004314","descriptor_name":"Down Syndrome","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006297","descriptor_name":"Health Services Accessibility","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008297","descriptor_name":"Male","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D010290","descriptor_name":"Parents","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D011788","descriptor_name":"Quality of Life","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D036301","descriptor_name":"Qualitative Research","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":5,"locations":[{"id":"doi:10.1097/dbp.0000000000000385","doi":"https://doi.org/10.1097/dbp.0000000000000385","is_oa":false,"landing_page_url":"https://doi.org/10.1097/dbp.0000000000000385","pdf_url":null,"source":{"id":"https://openalex.org/S116305490","display_name":"Journal of Developmental & Behavioral Pediatrics","issn_l":"0196-206X","issn":["0196-206X","1536-7312"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","doyens","erih-plus","jufo-1","medline","norway-1","poland-70","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310315671","host_organization_name":"Lippincott Williams & Wilkins","host_organization_lineage":["https://openalex.org/P4310315671","https://openalex.org/P4310318547"],"host_organization_lineage_names":["Lippincott Williams & Wilkins","Wolters Kluwer"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of Developmental &amp; Behavioral Pediatrics","raw_type":"journal-article"},{"id":"pmh:oai:pure.atira.dk:openaire/a7ad4137-fcea-454e-9240-846eb08eedbc","doi":null,"is_oa":true,"landing_page_url":"https://research-repository.uwa.edu.au/en/publications/a7ad4137-fcea-454e-9240-846eb08eedbc","pdf_url":null,"source":{"id":"https://openalex.org/S4306402492","display_name":"UWA Profiles and Research Repository (UWA)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I177877127","host_organization_name":"The University of Western Australia","host_organization_lineage":["https://openalex.org/I177877127"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Murphy, N, Epstein, A, Leonard, H, Davis, E, Reddihough, D, Whitehouse, A, Jacoby, P, Bourke, J, Williams, K & Downs, J 2017, 'Qualitative analysis of parental observations on quality of life in Australian children with Down syndrome', Journal of Developmental and Behavioral Pediatrics, vol. 38, no. 2, pp. 161-168. https://doi.org/10.1097/DBP.0000000000000385","raw_type":"info:eu-repo/semantics/article"},{"id":"pmid:28092296","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/28092296","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of developmental and behavioral pediatrics : JDBP","raw_type":"Journal Article"},{"id":"pmh:oai:pubmedcentral.nih.gov:5285501","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/5285501","pdf_url":null,"source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":"J Dev Behav Pediatr","raw_type":"Text"},{"id":"pmh:oai:espace.curtin.edu.au:20.500.11937/51374","doi":null,"is_oa":false,"landing_page_url":"http://hdl.handle.net/20.500.11937/51374","pdf_url":null,"source":{"id":"https://openalex.org/S4306401790","display_name":"eSpace (Curtin University)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I205640436","host_organization_name":"Curtin University","host_organization_lineage":["https://openalex.org/I205640436"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"Journal Article"}],"best_oa_location":{"id":"pmh:oai:pure.atira.dk:openaire/a7ad4137-fcea-454e-9240-846eb08eedbc","doi":null,"is_oa":true,"landing_page_url":"https://research-repository.uwa.edu.au/en/publications/a7ad4137-fcea-454e-9240-846eb08eedbc","pdf_url":null,"source":{"id":"https://openalex.org/S4306402492","display_name":"UWA Profiles and Research Repository (UWA)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I177877127","host_organization_name":"The University of Western Australia","host_organization_lineage":["https://openalex.org/I177877127"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Murphy, N, Epstein, A, Leonard, H, Davis, E, Reddihough, D, Whitehouse, A, Jacoby, P, Bourke, J, Williams, K & Downs, J 2017, 'Qualitative analysis of parental observations on quality of life in Australian children with Down syndrome', Journal of Developmental and Behavioral Pediatrics, vol. 38, no. 2, pp. 161-168. https://doi.org/10.1097/DBP.0000000000000385","raw_type":"info:eu-repo/semantics/article"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being","score":0.9391000270843506}],"study_designs":[],"awards":[{"id":"https://openalex.org/G3253539674","display_name":null,"funder_award_id":"R01 HD043100","funder_id":"https://openalex.org/F4320337611","funder_display_name":"Eunice Kennedy Shriver National Institute of Child Health and Human Development"},{"id":"https://openalex.org/G3404938441","display_name":"Rett syndrome: determinants of outcome and burden","funder_award_id":"5r01hd043100-03","funder_id":"https://openalex.org/F4320332161","funder_display_name":"National Institutes of Health"}],"funders":[{"id":"https://openalex.org/F4320332161","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88"},{"id":"https://openalex.org/F4320337611","display_name":"Eunice Kennedy Shriver National Institute of Child Health and Human Development","ror":"https://ror.org/04byxyr05"}],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":21,"referenced_works":["https://openalex.org/W1758185532","https://openalex.org/W1964081599","https://openalex.org/W1968912676","https://openalex.org/W1987571337","https://openalex.org/W1988039632","https://openalex.org/W1997565578","https://openalex.org/W2004867669","https://openalex.org/W2009429332","https://openalex.org/W2048896374","https://openalex.org/W2096870647","https://openalex.org/W2111818224","https://openalex.org/W2112387469","https://openalex.org/W2113319607","https://openalex.org/W2116690507","https://openalex.org/W2118297775","https://openalex.org/W2129813778","https://openalex.org/W2142373617","https://openalex.org/W2145047800","https://openalex.org/W2154057943","https://openalex.org/W2168328005","https://openalex.org/W2278829076"],"related_works":["https://openalex.org/W3090989081","https://openalex.org/W4402019733","https://openalex.org/W2971880638","https://openalex.org/W7110575705","https://openalex.org/W1551651079","https://openalex.org/W7024064178","https://openalex.org/W4291147617","https://openalex.org/W4412068249","https://openalex.org/W4294578530","https://openalex.org/W4393933948"],"abstract_inverted_index":{"OBJECTIVE:":[0],"There":[1],"are":[2],"many":[3],"challenges":[4],"to":[5,34,66,77,99,119,133,138,143,148,154,159,197,221],"health,":[6,168],"functioning,":[7],"and":[8,43,50,112,128,151,170,176,180,183,187,193,195,203,210,231,238],"participation":[9],"for":[10,21],"children":[11,39,49],"with":[12,40,60,136,146,157],"Down":[13,41,61],"syndrome;":[14],"yet,":[15],"the":[16,125,225],"quality-of-life":[17],"(QOL)":[18],"domains":[19,37,46,127,164,202],"important":[20],"this":[22],"group":[23],"have":[24],"never":[25],"been":[26],"clearly":[27],"articulated.":[28],"This":[29],"study":[30],"investigated":[31],"parental":[32],"observations":[33],"identify":[35,100],"QOL":[36],"in":[38,73,201],"syndrome":[42,62],"determined":[44],"whether":[45,121],"differed":[47],"between":[48,124],"adolescents.":[51],"METHODS:":[52],"The":[53,102],"sample":[54],"comprised":[55],"17":[56],"families":[57],"whose":[58],"child":[59],"was":[63,92,106],"aged":[64],"6":[65,132,142,153],"18":[67,139,149,160],"years.":[68,161],"Primary":[69],"caregivers":[70],"took":[71],"part":[72],"semistructured":[74],"telephone":[75],"interviews":[76],"explore":[78],"aspects":[79],"of":[80,190,224,235],"their":[81],"child's":[82,226],"life":[83,229],"that":[84],"were":[85,165,206],"satisfying":[86],"or":[87],"challenging.":[88],"Qualitative":[89],"thematic":[90],"analysis":[91],"implemented":[93],"using":[94],"a":[95,216,233],"grounded":[96],"theory":[97],"framework":[98,218],"domains.":[101],"coded":[103,126],"data":[104,214],"set":[105],"divided":[107],"into":[108],"2":[109],"groups":[110],"(childhood":[111],"adolescence)":[113],"at":[114],"3":[115],"age":[116],"cut":[117],"points":[118],"observe":[120],"differences":[122,200],"existed":[123],"domain":[129,204],"elements:":[130],"(1)":[131],"11":[134],"years":[135,145,156],"12":[137],"years;":[140,150],"(2)":[141],"13":[144],"14":[147],"(3)":[152],"15":[155],"16":[158],"RESULTS:":[162],"Eleven":[163],"identified:":[166],"physical":[167,177],"behavior":[169],"emotion,":[171],"personal":[172],"value,":[173],"communication,":[174],"movement":[175],"activity,":[178],"routines":[179],"predictability,":[181],"independence":[182],"autonomy,":[184],"social":[185],"connectedness":[186],"relationships,":[188],"variety":[189],"activities,":[191],"nature":[192],"outdoors,":[194],"access":[196],"services.":[198,239],"No":[199],"elements":[205],"identified":[207],"across":[208],"childhood":[209],"adolescence.":[211],"CONCLUSION:":[212],"Our":[213],"form":[215],"preliminary":[217],"from":[219],"which":[220],"design":[222],"investigations":[223],"perspectives":[227],"on":[228],"quality":[230],"suggest":[232],"range":[234],"necessary":[236],"supports":[237]},"counts_by_year":[{"year":2025,"cited_by_count":4},{"year":2024,"cited_by_count":6},{"year":2023,"cited_by_count":12},{"year":2022,"cited_by_count":7},{"year":2021,"cited_by_count":6},{"year":2020,"cited_by_count":7},{"year":2019,"cited_by_count":4},{"year":2018,"cited_by_count":4},{"year":2017,"cited_by_count":3}],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2017-01-26T00:00:00"}
