Exploring Experiences and Designing Guidance for Involving and Engaging Children and Young People in James Lind Alliance Priority Setting Partnerships

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.