ArticleResearch involvement and engagement2023
What matters to you? Engaging with children in the James Lind Alliance Children's Cancer Priority Setting Partnership.
Article in Research involvement and engagement, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
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4 citing papers in PubMed.
- Cancer early detection research priorities in some underrepresented communities: a commentary of the learnings from a community priority setting project.Research involvement and engagement · 2026Article
- What Matters Most: The Top 10 Child and Adolescent Cancer Research Priorities in Australia.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Exploring Experiences and Designing Guidance for Involving and Engaging Children and Young People in James Lind Alliance Priority Setting Partnerships.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Article
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11 authors.
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Abstract
backgroundPrevious priority setting exercises have sought to involve children, but in the final reporting, it is evident that few children had been engaged through the process. A primary aim in the Children's Cancer Priority Setting Partnership was to find out from children what they want research to focus on. We report on our experience to inform methods of engagement with children in future James Lind Alliance Priority Setting Partnerships and similar exercises.
methodsWe followed the James Lind Alliance process, collecting and shortlisting questions via online surveys with adult survivors of childhood cancer, carers, and professionals, and holding a final workshop. Alongside this, a parallel process to collect and prioritise questions from children was undertaken. We created animations for parents/carers to explain the project and surveys to children, gathered questions via online surveys and held a workshop with children to identify their priorities.
resultsSixty-one children and young people with cancer and 10 siblings, aged 3-21 years, submitted 252 potential questions/topics via the surveys. Submissions were refined into 24 summary questions. These questions were discussed at a workshop with eight children; they also added more questions on topics of importance to them. Workshop participants prioritised the Top 5 questions; top priority was, 'How can we make being in hospital a better experience for children and young people? (like having better food, internet, toys, and open visiting so other family members can be more involved in the child's care)'. The Top 5 also included cancer prevention, treatments closer to home, early diagnosis, and emotional support. These questions were taken to the final workshop at which the Top 10 priorities were decided, all five children's priorities were reflected in the final Top 10.
conclusionsWe have demonstrated that it is possible to successfully involve children directly in setting priorities for future research. Future priority setting exercises on topics relevant to children, should seek to include their views. The Children's Cancer Top 10 priorities reflect the voices of children and should inform the funding of future research.
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