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Exploring Experiences and Designing Guidance for Involving and Engaging Children and Young People in James Lind

Laura Postma¹, Faith Gibson^2,3, Jasmijn Z Jagt⁴

¹University of Groningen, Beatrix Children's Hospital University Medical Center Groningen, Groningen, the Netherlands.

Health Expectations : an International Journal of Public Participation in Health Care and Health Policy

|March 3, 2025

Insights

This study offers 29 practical tips for involving children and young people (CYP) in James Lind Alliance (JLA) Priority Setting Partnerships (PSPs). These guidelines enhance meaningful CYP involvement in research priority setting.

Area of Science:

Patient and Public Involvement in Research
Health Research Prioritization
Child and Adolescent Health Research

Background:

James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) involve children and young people (CYP) in research.
Existing JLA PSPs lack specific guidance for involving CYP under 18.
This study addresses the need for tailored guidance on CYP engagement in research priority setting.

Purpose of the Study:

To gather experiences and practical tips from CYP who have participated in JLA PSPs.
To develop comprehensive guidance for involving CYP in future JLA PSPs.
To refine methods for meaningful youth engagement in research agenda development.

Main Methods:

A qualitative study conducted in the UK and Netherlands, coordinated by the JLA.
Workshops were held with CYP who previously participated in JLA PSPs.
Focus was on collecting first-hand experiences and developing actionable 'tips' for engagement.

Main Results:

Seven CYP participated in workshops, contributing their insights.
Tips were categorized based on JLA PSP stages: steering group, surveys, and workshops.
Key themes included making participants comfortable, ensuring accessibility, and meaningful involvement.

Conclusions:

The project generated 29 specific tips for involving CYP in JLA PSPs.
This guidance supports future partnerships in effectively engaging young people.
The findings provide a framework for planning, executing, and completing research projects with CYP involvement.

Read full analysis

Abstract

Introduction:

Setting research priorities together with children and young people (CYP) in James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) is an example of involving CYP from the beginning of the research process. In these PSPs, CYP can be involved in steering groups, surveys, focus groups and the final priority-setting workshop. The success of JLA PSPs is evident, but it is important to note that specific guidance has not been available on how to involve CYP aged under 18 years. We aimed to collect experiences and tips from CYP who have taken part in a priority-setting exercise and to work with them to develop guidance for the JLA on involving CYP in PSPs.

Methods:

This project was conducted in the United Kingdom and the Netherlands and was coordinated by the JLA. The project was overseen by a project group consisting of eight people, this group invited CYP who had participated in previous JLA PSPs. A workshop in the Netherlands and in the United Kingdom was organised. Throughout the workshops, the primary focus was exploring the first-hand experiences of CYP. We developed 'tips' on how best to involve CYP. The project was conducted between May 2023 and February 2024.

Results:

Four CYP were involved in the UK workshop and three in the Dutch workshop. One young person had to cancel and was interviewed separately. Tips are divided into three categories, to reflect the different elements of the JLA method: steering group, surveys and the final priority-setting workshop including preparations and evaluations. Tips centred on three themes: making participants feel comfortable, making the process accessible and making the involvement of CYP meaningful.

Discussion:

This project provides a list of 29 tips for involving CYP in JLA PSPs and guides future partnerships seeking to involve CYP. It guides teams during the planning, execution and completion of the project.

Patient And Public Contribution:

Children and young people with experience in JLA PSPs shared their tips with us for involving CYP in future PSPs. We examined their perceptions of what worked well and their constructive insights into areas for refinement in involving CYP in developing a research agenda.

Keywords:

James Lind Alliance children and young people guideline patient and public involvement and engagement priority setting partnerships research agendas tips

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