AI Insight
This service development project engaged 13 children and young people (CYP) aged 12-16 years with long-term health conditions in focus groups to co-develop guidelines for establishing a meaningful Patient and Public Involvement, Engagement and Participation group specifically for young people. Participants identified key preferences including flexible meeting times outside school hours, hybrid delivery options, advance notice and clear agendas, and emphasized the importance of creating environments where CYP feel respected and heard. The resulting recommendations were mapped against UK Standards for Public Involvement and NIHR guidance to create a CYP-informed framework for designing, delivering and evaluating youth PPIEP groups.
Why it matters
This work addresses the persistent underrepresentation of children and young people in health research decision-making processes that directly affect them. By providing a structured, youth-informed framework, it offers practical guidance for researchers and institutions seeking to meaningfully involve CYP in research design and implementation, potentially improving the relevance and acceptability of pediatric health research.
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⚠️ Preprint – Noch nicht peer-reviewed
Dieser Artikel wurde noch nicht von unabhängigen Experten begutachtet. Die Ergebnisse sind vorläufig und sollten mit Vorsicht interpretiert werden.
Background: Patient and Public Involvement, Engagement and Participation (PPIEP) is increasingly recognised as an essential component of high-quality health research, ensuring research is relevant, acceptable and meaningful to the communities it aims to serve. PPIEPP activities remain predominantly on adults; focused children and young people (CYP) are often underrepresented during the design and implementation of research studies that affect them. It is therefore vital their direct experiences, priorities and preferences are captured. Objective: To develop a CYP-informed approach to meaningful involvement to guide the future development of a CYP PPIEP group. Design: A service development project using qualitative methods (online focus groups incorporating Mentimeter) to explore perspectives and experiences of involvement, engagement and participation in research with CYP with long-term health conditions and to co-develop key elements of a future CYP PPIEP group. Results: Thirteen CYP (7 males and 6 females) aged 12-16 years (median 14 years) from a range of ethnic backgrounds and long-term health conditions were involved in n=4 online focus groups. CYP expressed a preference for flexible meeting options outside school hours, with hybrid delivery options to improve accessibility, alongside advance notice, reminders and clear meeting agendas. CYP also expressed the importance of researchers creating an environment where CYP feel listened to, respected and able to contribute openly. CYP provided recommendations on recruitment strategies for CYP PPIEP groups, information needs prior to joining, motivations for participation, the inclusion of diverse CYP groups, creating a safe environment for sharing views, and training requirements to support meaningful involvement. Conclusion: CYP identified key principles to inform the development of a CYP PPIEP group. These principles were mapped against the UK Standards for Public Involvement and National Institute for Health and Care Research (NIHR) guidance to develop a CYP-informed framework for the design, delivery and evaluation of a CYP PPIEP group.