Priority setting for children and young people with chronic conditions and disabilities

Amy Finlay-Jones, Rebecca Sampson, Asha Parkinson, Karina Prentice, Keely Bebbington, Claire Treadgold, Belinda Frank, Amber Bates, Jacinta Freeman, Jayden Lucas, Julie Dart, Elizabeth Davis, Raghu Lingam, Anne McKenzie

Research output: Contribution to journalArticlepeer-review

3 Citations (Scopus)

Abstract

BACKGROUND: The 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.

METHODS: We 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.

RESULTS: In 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.

CONCLUSIONS: The 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.

Original languageEnglish
Pages (from-to)1562-1574
Number of pages13
JournalHealth Expectations
Volume26
Issue number4
DOIs
Publication statusPublished - Aug 2023

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