Involving children and young people in paediatric research priority setting: a narrative review

Abstract

ObjectiveThe objective of this study is twofold: first, to describe the methods used when involving children and young people (CYP) in developing a paediatric research agenda and, second, to evaluate how the existing literature describes the impact of involving CYP. We distinguish three forms of impact: impact on the research agenda (focused impact), impact on researchers and CYP (diffuse impact) and impact on future research (research impact).DesignA narrative review of MEDLINE, PsycINFO, Web of Science and Google Scholar was conducted from October 2016 to January 2022. The included studies involved at least one CYP in developing a research agenda and were published in English.Results22 studies were included; the CYP involved were aged between 6 years and 25 years. Little variation was found in the methods used to involve them. The methods used were James Lind Alliance (JLA) approach (n=16), focus groups (n=2), workshop (n=2), research prioritisation by affected communities (n=1) and combined methods (n=1). Impact was rarely described: focused impact in nine studies, diffuse impact in zero studies and research impact in three studies.ConclusionThis study concludes that the JLA approach is most frequently used to involve CYP and that all methods used to involve them are rarely evaluated. It also concludes that the reported impact of involving CYPs is incomplete. This study implies that to convince sceptical researchers of the benefits of involving CYPs and to justify the costs, more attention should be paid to reporting these impacts.

‘It's Powerful’ The impact of involving children and young people in developing paediatric research agendas: A qualitative interview study

“…The narrative review of Postma et al Twenty-two studies were included that were published between October 2016 and March 2022. 8 3. A literature search between March 2022 and August 2023 identified four more studies.…”

“…In only 14% of the PRAs, post-PPI action plans were described. 8 The impact of involving CYP on the PRAs considered different research questions [24][25][26][27] and different priorities. [28][29][30][31][32] In the second category, CYP had the same research questions but prioritised the questions differently than the researchers did.…”

“…2,6 Most studies focus on describing PPI processes rather than exploring the impact of PPI. 7,8 Fortunately, there have been researchers who evaluated the impact of involving CYP and their families in paediatric research in general. [9][10][11][12] Vanderhout et al found three different forms of impact involving CYP: impact on the research process, on the research team and on the CYP and their families.…”

“…The impact of the involvement of CYP on the CYP and researchers themselves was not described. In only 14% of the PRAs, post‐PPI action plans were described 8 . The impact of involving CYP on the PRAs considered different research questions 24–27 and different priorities 28–32 .…”

“…How these tools are used and how impact is reported, currently varies. 8,20 To explain the importance of evaluating the impact of involving CYP in developing PRAs instead of general research projects, it is important to acknowledge that the involvement of CYP in research can be divided into three phases: the preparatory, the execution and the translation phase. During the preparatory phase, CYP can be involved in the prioritisation of research topics, 21 which involves developing PRAs.…”