Development of a Children and Young People's Informed Framework for the Design, Delivery and Evaluation of a Patient and Public Involvement, Engagement and Participation Group: A Service Development Project.
- 1King's College London
Abstract
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.
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BibTeX
@misc{chudleigh2026development,
title = {{Development of a Children and Young People's Informed Framework for the Design, Delivery and Evaluation of a Patient and Public Involvement, Engagement and Participation Group: A Service Development Project.}},
author = {J. Chudleigh and G. Jones and L. Pickard and M. Deverese and P. Holder and A. Singh and N. Samad and A. Rose and J. Preston and I. Wolfe},
howpublished = {medRxiv},
year = {2026},
month = oct,
doi = {10.64898/2026.10.21.26366171},
url = {https://www.medrxiv.org/content/10.64898/2026.10.21.26366171v1},
note = {CC BY},
}
RIS
TY - UNPB
TI - Development of a Children and Young People's Informed Framework for the Design, Delivery and Evaluation of a Patient and Public Involvement, Engagement and Participation Group: A Service Development Project.
AU - J. Chudleigh
AU - G. Jones
AU - L. Pickard
AU - M. Deverese
AU - P. Holder
AU - A. Singh
AU - N. Samad
AU - A. Rose
AU - J. Preston
AU - I. Wolfe
PY - 2026
DA - 2026/10/21
PB - medRxiv
DO - 10.64898/2026.10.21.26366171
UR - https://www.medrxiv.org/content/10.64898/2026.10.21.26366171v1
AB - 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.
ER -