ArticleHealth expectations : an international journal of public participation in health care and health policy2023
Priority setting for children and young people with chronic conditions and disabilities.
Article in Health expectations : an international journal of public participation in health care and health policy, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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The trial behind it
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Who cites it
12 citing papers in PubMed.
- Article
- The Many Faces of Engagement: A Scoping Review of Paediatric Patient and Family Engagement in Clinical Care, Education and Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Caregiver burden in children with medical complexity: an approach based on the identification of associated factors.Revista paulista de pediatria : orgao oficial da Sociedade de Pediatria de Sao Paulo · 2026Article
- Article
- Identity development and adaptation in adolescents with genetic conditions: a qualitatively oriented mixed-methods study to develop strategies for optimizing clinical genetics services.Orphanet journal of rare diseases · 2025Article
- Exploring Young Adults' Experiences of Atopic Dermatitis Self-Management and Use of Community Pharmacy: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Balancing Care and Sacrifice: Lived Experiences and Support Needs of Primary Caregivers in Pediatric Chronic Pain Across Canada and Australia.Children (Basel, Switzerland) · 2025Article
- Research priorities for preterm lung health research across the lifespan: a community priority setting partnership.BMJ paediatrics open · 2025Article
- Article
- Negotiating Access to Health and Wellbeing Support in Schools for Young People with Chronic Health Conditions in English Secondary Schools: A Qualitative Multi-Informant Study.Continuity in education · 2025Article
- Priority setting for children and young people with chronic conditions and disabilities.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- The Living Lab at Home: Feasibility and Acceptability of Multimodal In-Home Data Collection Among Youth Across the Developmental Spectrum.Journal of developmental and behavioral pediatrics : JDBPArticle
Corrections and comments
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Authors and funding
14 authors.
Funding
Abstract
backgroundThe aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers and the professionals who work with them.
methodsWe conducted a three-stage study based on the James Lind Alliance priority-setting partnership methods. It comprised two online surveys (n = 200; n = 201) and a consensus workshop (n = 21) with these three stakeholder groups in Australia.
resultsIn the first stage, 456 responses were submitted, which were coded and collapsed into 40 overarching themes. In the second stage, 20 themes were shortlisted, which were further refined in stage 3, before the top 10 priorities being selected. Of these, the top three priorities were improving awareness and inclusion in all aspects of their life (school, work and social relationships), improving access to treatments and support and improving the process of diagnosis.
conclusionsThe top 10 priorities identified reflect the need to focus on the individual, health systems and social aspects of the CCD experience when conducting research in this area. PATIENT OR PUBLIC CONTRIBUTION: This study was guided by three Advisory Groups, comprising (1) young people living with CCD; (2) parents and caregivers of a child or young person with CCD and (3) professionals working with children and young people with CCD. These groups met several times across the course of the project and provided input into study aims, materials, methods and data interpretation and reporting. Additionally, the lead author and seven members of the author group have lived and experienced CCD.
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