NDLI: What matters to you? Engaging with children in the James Lind Alliance Children’s Cancer Priority Setting Partnership

Content Provider	Springer Nature : BioMed Central
Author	Aldiss, Susie Hart-Spencer, Penelope Langton, Loveday Malik, Sonia McEvoy, Keeley Morgan, Jessica E. Reed-Berendt, Rosa Hollis, Rachel Phillips, Bob Gibson, Faith
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.
Related Links	https://researchinvolvement.biomedcentral.com/counter/pdf/10.1186/s40900-023-00518-2.pdf
Ending Page	16
Page Count	16
Starting Page	1
File Format	HTM / HTML
ISSN	20567529
DOI	10.1186/s40900-023-00518-2
Journal	Research Involvement and Engagement
Issue Number	1
Volume Number	9
Language	English
Publisher	BioMed Central
Publisher Date	2023-11-30
Access Restriction	Open
Subject Keyword	Medicine Public Health Children Cancer James Lind Alliance Research priority setting Patient and public involvement Priority Setting Partnerships Medicine/Public Health
Content Type	Text
Resource Type	Article
Subject	Health Professions Health (social science)

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

What happens after James Lind Alliance Priority Setting Partnerships? A qualitative study of contexts, processes and impacts

Adapting the James Lind Alliance priority setting process to better support patient participation: an example from cystic fibrosis

Dementia priority setting partnership with the James Lind Alliance: using patient and public involvement and the evidence base to inform the research agenda

Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership

Maternal and newborn health priority setting partnership in rural Uganda in association with the James Lind Alliance: a study protocol

What are the most important unanswered research questions in trial retention? A James Lind Alliance Priority Setting Partnership: the PRioRiTy II (Prioritising Retention in Randomised Trials) study

Recommendations from a James Lind Alliance priority setting partnership - a qualitative interview study

Rare musculoskeletal diseases in adults: a research priority setting partnership with the James Lind Alliance

What Are the Top 10 Research Questions in the Treatment of Inflammatory Bowel Disease? A Priority Setting Partnership with the James Lind Alliance

What matters to you? Engaging with children in the James Lind Alliance Children’s Cancer Priority Setting Partnership

Similar Documents

What happens after James Lind Alliance Priority Setting Partnerships? A qualitative study of contexts, processes and impacts

Adapting the James Lind Alliance priority setting process to better support patient participation: an example from cystic fibrosis

Dementia priority setting partnership with the James Lind Alliance: using patient and public involvement and the evidence base to inform the research agenda

Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership

Maternal and newborn health priority setting partnership in rural Uganda in association with the James Lind Alliance: a study protocol

What are the most important unanswered research questions in trial retention? A James Lind Alliance Priority Setting Partnership: the PRioRiTy II (Prioritising Retention in Randomised Trials) study

Recommendations from a James Lind Alliance priority setting partnership - a qualitative interview study

Rare musculoskeletal diseases in adults: a research priority setting partnership with the James Lind Alliance

What Are the Top 10 Research Questions in the Treatment of Inflammatory Bowel Disease? A Priority Setting Partnership with the James Lind Alliance

What matters to you? Engaging with children in the James Lind Alliance Children’s Cancer Priority Setting Partnership