What matters to you? Engaging with children in the James Lind Alliance Children’s Cancer Priority Setting Partnership
What matters to you? Engaging with children in the James Lind Alliance Children’s Cancer Priority Setting Partnership
Background: previous 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.
Methods: we 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.
Results: sixty-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.
Conclusions: we 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.
Cancer, Children, James Lind Alliance, Patient and public involvement, Priority Setting Partnerships, Research priority setting
Aldiss, Susie
05a1aea6-91a9-447d-98e5-6cf936b02087
Hart-Spencer, Penelope
e7527473-9c85-4797-b1ba-f6915d32c2f4
Langton, Loveday
d3f3076d-6cd2-4162-9d2a-0446b695d965
Hall, Nigel
6919e8af-3890-42c1-98a7-c110791957cf
on behalf of the James Lind Alliance Children's Cancer Priority Setting Partnership Steering Group
30 November 2023
Aldiss, Susie
05a1aea6-91a9-447d-98e5-6cf936b02087
Hart-Spencer, Penelope
e7527473-9c85-4797-b1ba-f6915d32c2f4
Langton, Loveday
d3f3076d-6cd2-4162-9d2a-0446b695d965
Hall, Nigel
6919e8af-3890-42c1-98a7-c110791957cf
Aldiss, Susie, Hart-Spencer, Penelope and Langton, Loveday
,
et al. and on behalf of the James Lind Alliance Children's Cancer Priority Setting Partnership Steering Group
(2023)
What matters to you? Engaging with children in the James Lind Alliance Children’s Cancer Priority Setting Partnership.
Research Involvement and Engagement, 9 (1), [110].
(doi:10.1186/s40900-023-00518-2).
Abstract
Background: previous 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.
Methods: we 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.
Results: sixty-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.
Conclusions: we 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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Aldiss_et_al-2023-Research_Involvement_and_Engagement
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More information
Accepted/In Press date: 20 November 2023
e-pub ahead of print date: 30 November 2023
Published date: 30 November 2023
Additional Information:
Funding Information:
This work was supported by Children’s Cancer and Leukaemia Group (CCLG) and Little Princess Trust. One representative from each of the two funding bodies were members of the Children’s Cancer PSP steering group and, alongside all group members, they were involved in decision-making at all stages of the project, including the project design, data analysis and interpretation of data. They were not involved in writing this manuscript. Professor Faith Gibson is supported in part by the Great Ormond Street NIHR Biomedical Research Centre.
Funding Information:
The Children’s Cancer PSP would like to thank the children and young people who took the time to send in their questions and/or attend the workshop. In addition to the authors, the members of the James Lind Alliance Children’s Cancer Priority Setting Partnership Steering Group were: Ashley Ball-Gamble, Alex Brownsdon, Julia Chisholm, Scott Crowther, Rachel Dommett, Jonathan Gower, Nigel Hall, Helen Hartley, Jenni Hatton, Louise Henry, Kirsty Maddock, Helen Morris, Simon Parke, Sue Picton, Dan Saunders, Andy Stewart, Wendy Tarplee-Morris, Amy Walsh, Anna Watkins, David Weller. We would also like to acknowledge Dr Adam McNamara (ScienceSplained), who created with us the children’s animations.
Publisher Copyright:
© 2023, The Author(s).
Keywords:
Cancer, Children, James Lind Alliance, Patient and public involvement, Priority Setting Partnerships, Research priority setting
Identifiers
Local EPrints ID: 486151
URI: http://eprints.soton.ac.uk/id/eprint/486151
ISSN: 2056-7529
PURE UUID: 2956c654-47f4-41a0-ab69-5cf0e191f2ae
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Date deposited: 11 Jan 2024 17:30
Last modified: 06 Jun 2024 01:49
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Contributors
Author:
Susie Aldiss
Author:
Penelope Hart-Spencer
Author:
Loveday Langton
Corporate Author: et al.
Corporate Author: on behalf of the James Lind Alliance Children's Cancer Priority Setting Partnership Steering Group
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