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| Content Provider | Springer Nature : BioMed Central |
|---|---|
| Author | Downs, Jenny Keeley, Jessica Skoss, Rachel Mills, Jaquie Nevill, Thom Schippers, Alice Lindly, Olivia Thompson, Sandra |
| Abstract | Background 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. |
| Related Links | https://equityhealthj.biomedcentral.com/counter/pdf/10.1186/s12939-024-02204-5.pdf |
| Ending Page | 9 |
| Page Count | 9 |
| Starting Page | 1 |
| File Format | HTM / HTML |
| ISSN | 14759276 |
| DOI | 10.1186/s12939-024-02204-5 |
| Journal | International Journal for Equity in Health |
| Issue Number | 1 |
| Volume Number | 23 |
| Language | English |
| Publisher | BioMed Central |
| Publisher Date | 2024-06-07 |
| Access Restriction | Open |
| Subject Keyword | Public Health Health Promotion and Disease Prevention Health Services Research Health Policy Social Justice Equality and Human Rights Social Policy Intellectual disability Health literacy Shared decision making Supported decision making Disability Royal Commission |
| Content Type | Text |
| Resource Type | Review |
| Subject | Health Policy Public Health, Environmental and Occupational Health |
| Journal Impact Factor | 4.5/2023 |
| 5-Year Journal Impact Factor | 4.7/2023 |
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