Involvement of children and young people in the conduct of health research: A rapid umbrella review

Abstract

Background: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research.

Aims: This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement.

Methods: We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis.

Results: The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts-based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership.

Conclusion: Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated.

Patient/public contribution: This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions.

Keywords: adolescent; child; community‐based participatory research; health services research; patient participation; research design.

Figure 1

Level of involvement of children and young people in health research. Adapted from the International Association of Public Participation (IAP2) Public Participation Spectrum with influence from Shier's ‘Pathways to participation’ model.

Figure 2

Search and screening process. Adapted from the Preferred Reporting Items for Systematic Reviews and Meta‐Analysis 2020 flow diagram template., , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Figure 3

Stage of research involvement (n, % of studies with available data). Light grey bars represent combined results for involvement of CYP and/or their representatives (n = 469 studies). Dark grey bars represent results for CYP alone (≤24 years old; no representatives; n = 344 studies). Black bars represent results for children alone (≤12 years old, no representatives; n = 28 studies). NB: multiple selections possible. CYP, children and young people.

Figure 4

(A) Overarching method types and (B) specific methodologies used for research involvement (n, % of studies with available data). Light grey bars represent combined results for involvement of CYP and/or their representatives (n = 600 studies). Dark grey bars represent results for CYP alone (≤24 years old; no representatives; n = 397 studies). Black bars represent results for children alone (≤12 years old, no representatives; n = 49 studies). NB: multiple selections possible. CYP, children and young people.

Figure 5

Level of research involvement (n, % of studies with available data). Light grey bars represent combined results for involvement of CYP and/or their representatives (n = 259 studies). Dark grey bars represent results for CYP alone (≤24 years old; no representatives; n = 160 studies). NB: multiple selections possible. CYP, children and young people.

Figure 6

Benefits of involvement reported to positively impact (A) the research study (n = 25 reviews) and (B) the CYP involved in the research (n = 22 reviews). % of reviews with available data. NB: multiple selections possible. CYP, children and young people.