{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T10:34:56Z","timestamp":1787567696791,"version":"build-2736575974"},"reference-count":45,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T00:00:00Z","timestamp":1787529600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T00:00:00Z","timestamp":1787529600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["GTN2015902"],"award-info":[{"award-number":["GTN2015902"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J intellect Disabil Res"],"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Young people with intellectual disability often have complex healthcare needs. Parent\/caregivers can enhance their child's involvement in healthcare decision\u2010making to improve treatment adherence and health outcomes. Healthcare decision\u2010making is embedded within health literacy skillsets, and for people with intellectual disability additional time and assistance are needed to ensure preferences are included. This study aims to explore parent\/caregiver perspectives on the different ways that young people with intellectual disability participate in healthcare decision\u2010making and factors that influence involvement to inform future support resources.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Fifty\u2010three interviews were conducted with parent\/caregivers of 26 females and 27 males with intellectual disability aged 10\u201325\u2009years. Interviews took place online and were audio\u2010recorded and transcribed verbatim after informed consent was provided. Interviews explored decision\u2010making involvement at home and in healthcare settings. A conventional content analysis was conducted using NVivo.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The findings are organised into three overarching categories including the primary finding of the \u2018Ladder of decision\u2010making involvement\u2019, which describes the different levels of participation in the decision\u2010making process from active to passive, as described by parent\/caregivers. Secondary findings include the \u2018Facilitators and barriers of decision\u2010making involvement\u2019, which centre on five key areas (information, opportunities and experiences, communication, relationships, accommodations and support) and \u2018Parent\/caregiver influences and experiences\u2019, which include reflections on the value (in terms of the young person's rights and agency), challenges and contextuality of decision\u2010making. Some parent\/caregivers did not consider it possible to involve their child in healthcare decision\u2010making due to a perceived lack of capacity.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>This research makes an important contribution to the literature by mapping parent\/caregiver perspectives on the scope of involvement and outlining key factors and influences that shape involvement opportunities, skills and experiences. Findings can inform the resources that support parent\/caregivers to develop and assist decision\u2010making skills with their child across levels of involvement.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/jir.70165","type":"journal-article","created":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T09:35:01Z","timestamp":1787564101000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Parent\/Caregiver Perspectives on the Healthcare Decision\u2010Making Involvement of Young People With Intellectual Disability: A Qualitative Study"],"prefix":"10.1111","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9613-4713","authenticated-orcid":false,"given":"Jessica","family":"Keeley","sequence":"first","affiliation":[{"name":"The Kids Research Institute Australia, Centre for Child Health Research University of Western Australia  Perth Australia"},{"name":"University of Western Australia Medical School The University of Western Australia  Perth Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zhenmei","family":"Yeap","sequence":"additional","affiliation":[{"name":"The Kids Research Institute Australia, Centre for Child Health Research University of Western Australia  Perth Australia"},{"name":"School of Psychological Science The University of Western Australia  Perth Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6972-2875","authenticated-orcid":false,"given":"Thomas","family":"Nevill","sequence":"additional","affiliation":[{"name":"The Kids Research Institute Australia, Centre for Child Health Research University of Western Australia  Perth Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7033-5063","authenticated-orcid":false,"given":"Rachel","family":"Skoss","sequence":"additional","affiliation":[{"name":"The Kids Research Institute Australia, Centre for Child Health Research University of Western Australia  Perth Australia"},{"name":"Microboards Australia  Perth Australia"},{"name":"School of Population and Global Health The University of Western Australia  Perth Australia"},{"name":"Institute for Health Research The University of Notre Dame Australia  Perth Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-3263-2486","authenticated-orcid":false,"given":"Aasta","family":"Abbott","sequence":"additional","affiliation":[{"name":"University of Western Australia Western Australian Centre for Rural Health  Perth Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0327-7155","authenticated-orcid":false,"given":"Sandra","family":"Thompson","sequence":"additional","affiliation":[{"name":"University of Western Australia Western Australian Centre for Rural Health  Perth Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6562-7144","authenticated-orcid":false,"given":"Sophie","family":"Haywood","sequence":"additional","affiliation":[{"name":"School of Population Health Curtin University  Perth Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4910-0152","authenticated-orcid":false,"given":"Rachel","family":"Collins","sequence":"additional","affiliation":[{"name":"CAHS Transition Service Perth Children's Hospital  Perth Australia"},{"name":"School of Paediatrics University of Western Australia, Medical School  Perth Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9729-6984","authenticated-orcid":false,"given":"Katherine","family":"Langdon","sequence":"additional","affiliation":[{"name":"The Kids Research Institute Australia, Centre for Child Health Research University of Western Australia  Perth Australia"},{"name":"Kids Rehab Perth Children's Hospital  Perth Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7358-9037","authenticated-orcid":false,"given":"Jenny","family":"Downs","sequence":"additional","affiliation":[{"name":"The Kids Research Institute Australia, Centre for Child Health Research University of Western Australia  Perth Australia"},{"name":"Curtin School of Allied Health Curtin University  Perth Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,8,24]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2017\u20100956"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.glmedi.2024.100051"},{"key":"e_1_2_10_4_1","doi-asserted-by":"crossref","unstructured":"Alshammari M. 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