Journal Article

A rapid review of guidelines on the involvement of adolescents in health research

Bruce, Delali, Wacker, Ciara, Hadfield, Kristin, Bourke, Ashling, Warraitch, Azza

2024

Overview

Background Meaningful involvement of adolescents in health research is their fundamental human right and has many benefits. A lack of awareness among researchers on how to meaningfully involve adolescents in health research has been linked to adolescent under involvement in health research. To address this barrier, studies have reported the need for more guidance. To inform the development of better guidelines on adolescent involvement, there is a need to first consolidate the currently available guidance on adolescent involvement in health research and to identify the gaps in these guidelines. This review aims to systematically identify all the currently available guidelines on adolescent involvement in health research and evaluate their scope, content, context, and quality. Methods This rapid review was pre‐registered with PROSPERO #CRD42021293586. It included documents that incorporated tangible recommendations on the involvement of adolescents in health research. We searched six databases for peer‐reviewed literature: MEDLINE, CINAHL, Embase, Scopus, Web of Science, and ERIC. We conducted a grey literature search in Google Scholar, Google, websites of 472 relevant organisations and sought expert input. The quality of the guidelines was assessed using the Appraisal of Guidelines for REsearch & Evaluation (AGREE‐II) Instrument. Data was analysed using descriptive analyses and narrative synthesis. Results We found that the current guidelines on adolescent involvement in health research are often narrow in scope, targeting specific users and populations while focusing on limited research areas. The guidelines individually fail to provide comprehensive coverage of recommendations across all topics related to adolescent research involvement, that are collectively addressed across all included guidelines. Furthermore, these guidelines tend to be context‐specific and are generally of low quality, often due to inadequate stakeholder involvement and a lack of rigorous development methods. Conclusion This review provides a consolidated list of guidelines on adolescent involvement in health research along with their quality scores as a resource for researchers to select the guidelines suitable for their research topic, context, and scope for adolescent involvement. There is a need to develop a set of guidelines on adolescent involvement in research, which are comprehensive in scope, cover all key aspects of adolescent involvement in health research, can be adapted for different contexts, and which are based on rigorous and systematic methods. Patient and Public Involvement Adolescent co‐researchers D. B. and C. W. were involved at different stages of the review process. D. B. screened 25% of the peer‐reviewed articles at the title and screening stage and 10% at full‐text screening stage. C. W. extracted data from 10% of the included guidelines. Both co‐researchers reviewed and shared their feedback on the article and are co‐authors on this paper. They will also be invited to contribute to further dissemination of the findings from this review.

• Publisher: John Wiley & Sons, Inc,John Wiley and Sons Inc,Wiley
• Subject: Adolescent / adolescent engagement / adolescent involvement / Adolescents / Biomedical Research - standards / Citizen participation / Context / Dissemination / Evaluation research / Feedback / Grey literature / Guidelines / Guidelines as Topic / Health / Health research / Humans / Industrialized nations / Medical research / Medical screening / Patient Participation / Peers / public and patient involvement / Public involvement / Researchers / Review / Scope / Search engines / Teenagers