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Priority setting for children and young people with chronic conditions and disabilities |
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| Authors: | Amy Finlay-Jones PhD Rebecca Sampson BPsych (Hons) Asha Parkinson BPsych (Hons) Karina Prentice BPsych (Hons) Keely Bebbington PhD Claire Treadgold PhD Belinda Frank Amber Bates Jacinta Freeman MPH Jayden Lucas BPsych (Hons) Julie Dart PGCert Elizabeth Davis PhD Raghu Lingam PhD Anne McKenzie |
| Affiliation: | 1. Early Neurodevelopment and Mental Health, Telethon Kids Institute, Nedlands, Western Australia, Australia;2. Early Neurodevelopment and Mental Health, Telethon Kids Institute, Nedlands, Western Australia, Australia School of Population Health, Curtin University, Perth, Western Australia, Australia;3. Starlight Children's Foundation, Naremburn, New South Wales, Australia University of New South Wales, Sydney, New South Wales, Australia;4. Early Neurodevelopment and Mental Health, Telethon Kids Institute, Nedlands, Western Australia, Australia Tiny Sparks WA, West Leederville, Western Australia, Australia;5. Early Neurodevelopment and Mental Health, Telethon Kids Institute, Nedlands, Western Australia, Australia Perth Children's Hospital, Nedlands, Western Australia, Australia;6. Early Neurodevelopment and Mental Health, Telethon Kids Institute, Nedlands, Western Australia, Australia Medical School, University of Western Australia, Perth, Western Australia, Australia Perth Children's Hospital, Nedlands, Western Australia, Australia;7. University of New South Wales, Sydney, New South Wales, Australia |
| 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 ContributionThis 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. |
| Keywords: | child and adolescent chronic conditions consumer involvement disability priority setting |