Perspectives on the essential skills of healthcare decision making in children and adolescents with intellectual disability

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dc.contributor.authorDowns, J.
dc.contributor.authorKeeley, J.
dc.contributor.authorSkoss, R.
dc.contributor.authorMills, J.
dc.contributor.authorNevill, T.
dc.contributor.authorSchippers, A.
dc.contributor.authorLindly, O.
dc.contributor.authorThompson, S.
dc.date.issued2024
dc.description.abstractBackground: Involvement in healthcare decisions is associated with better health outcomes for patients. For children and adolescents with intellectual disability, parents and healthcare professionals need to balance listening to a child’s wishes with the responsibility of keeping them safe. However, there is a scarcity of literature evaluating how to effectively involve them in decision making. In this context, we review the concept of health literacy, focusing on the skills of healthcare decision making for children and adolescents with intellectual disability. Methods: We describe the concept of health literacy and models explaining shared decision making (individuals and healthcare professionals collaborate in decision making process) and supported decision making (when a trusted person supports the individual to collaborate with the healthcare professional in the decision-making process), and a rapid review of the literature evaluating their efficacy. We discuss healthcare decision making for children and adolescents with intellectual disability in the context of relevant recommendations from the recent Disability Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability in Australia. Results: Health literacy skills enable individuals to access, understand, appraise, remember and use health information and services. Shared decision making has been described for children with chronic conditions and supported decision making for adults with intellectual disability. Decision-making contributes to how individuals appraise and use healthcare. The rapid review found very limited evidence of outcomes where children and adolescents with intellectual disability have been supported to contribute to their healthcare decisions. Recommendations from the Disability Royal Commission highlight current needs for greater efforts to support and build the capacity of individuals with disability to be involved in the decisions that affect their life, including healthcare decision making. Conclusions: Existing rights frameworks and healthcare standards confirm the importance of providing all people with the opportunities to learn and practise health literacy skills including decision making. There is little literature examining interventions for healthcare decision making for children with intellectual disability. Childhood is a critical time for the development of skills and autonomy. Evidence for how children and adolescents with intellectual disability can learn and practice healthcare decision-making skills in preparation for adulthood is needed to reduce inequities in their autonomy.
dc.description.statementofresponsibilityJenny Downs, Jessica Keeley, Rachel Skoss, Jaquie Mills, Thom Nevill, Alice Schippers, Olivia Lindly, and Sandra Thompson
dc.identifier.citationInternational Journal for Equity in Health, 2024; 23(1):119-1-119-9
dc.identifier.doi10.1186/s12939-024-02204-5
dc.identifier.issn1475-9276
dc.identifier.issn1475-9276
dc.identifier.orcidThompson, S. [0000-0003-0327-7155]
dc.identifier.urihttps://hdl.handle.net/2440/144140
dc.language.isoen
dc.publisherSpringer Science and Business Media LLC
dc.relation.granthttp://purl.org/au-research/grants/nhmrc/GNT2015902
dc.rights© The Author(s) 2024. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
dc.source.urihttp://dx.doi.org/10.1186/s12939-024-02204-5
dc.subjectDisability Royal Commission
dc.subjectHealth literacy
dc.subjectIntellectual disability
dc.subjectShared decision making
dc.subjectSupported decision making
dc.subject.meshHumans
dc.subject.meshDecision Making
dc.subject.meshAdolescent
dc.subject.meshChild
dc.subject.meshPatient Participation
dc.subject.meshAustralia
dc.subject.meshHealth Literacy
dc.subject.meshIntellectual Disability
dc.subject.meshDecision Making, Shared
dc.titlePerspectives on the essential skills of healthcare decision making in children and adolescents with intellectual disability
dc.typeJournal article
pubs.publication-statusPublished

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