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.
Background A growing trend in research is to involve co-researchers. It is referred to as Patient and Public Involvement (PPI) and comprises three groups: the patients, the public, and the researchers. Like in adult public involvement, healthy children can also be considered as ‘the public’. Paediatric patients and researchers experienced in conducting child-inclusive research are often asked about their attitudes towards the challenges they encounter. This is not the case for healthy children and researchers without such experience. Our aim was to investigate the attitudes of these children and researchers towards the challenges encountered during child-inclusive research. Methods This was an exploratory study. We interviewed healthy children and adult researchers without prior experience in child-inclusive research. We recruited the children through a foundation for young researchers and the adult researchers from two hospitals, both in Groningen, the Netherlands. We audio recorded the interviews, and they were transcribed verbatim. We analysed the data using qualitative content analysis. Results We interviewed five adult researchers and seven healthy children, aged 9 to 14 years. Both groups thought that it was best to involve children in paediatric research from as early a stage as possible. The children assumed that no prior training would be needed because they had already been trained at school. The researchers’ attitudes varied regarding training children beforehand. Both groups thought that researchers did not need prior training on how to involve children if they worked with children on a daily basis. The children felt that recognition and a modest financial reward was appropriate. Adult researchers were cautious about rewarding the children. They feared it might render the children less intrinsically motivated. Conclusion Our study indicated that young and adult researchers have clear attitudes towards the challenges encountered during child-inclusive research. Young researchers could help adult researchers to find solutions to these challenges, even if they have no prior experience in child-inclusive research. Adult researchers who acknowledge the importance of child-inclusive research represent a significant step towards meaningful involvement of children. Our results imply that children could be involved in the decision-making process concerning the challenges encountered in child-inclusive research.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.