Methods of involving young people in health research: An umbrella review

• In Event: Methods of involving young people in health research

Abstract

Background: Youth involvement in health research is defined as research that is done with or by young people and refers to meaningful collaboration and consultation with young people at different stages of the research process (NIHR, 2020). Despite growing recognition of the importance of these participatory approaches, <1% of studies on child and adolescent health report youth engagement (Sellars et al., 2021). Given this gap, there is a need to raise awareness among researchers on how to engage youth in health research.
Objective: This umbrella review aimed to synthesize findings from reviews on the methods of involving young people in health research and collate evidence on best practices of youth involvement.
Methods: This umbrella review was pre-registered with PROSPERO #CRD42021287467. We included review articles exploring adolescents' involvement in studies aiming to improve their physical or mental health. We searched 11 databases, Google Scholar, and PROSPERO, supplemented by a hand search of the reference lists of eligible reviews, relevant journals, websites of 472 organizations, and input from experts. We conducted title and abstract screening, full-text screening, data extraction, and risk of bias assessment using Covidence. Young people were engaged as co-researchers and co-conducted the review.
Results: Young people can be engaged at different stages of the research process as members of youth advisory groups, steering committees, consultants, co-researchers, and collaborators. Different strategies have been reported to engage youth at different steps, e.g., focus groups are most commonly used in the co-design of interventions with youth. Similarly, young people are most often involved as peer leaders or educators in the intervention delivery phase. Other methods used to engage youth in deciding on the research questions, designing research procedures, interventions, data analysis, and dissemination involved the use of participatory workshops, photovoice, hackathons, focus groups, etc
We found that youth involvement in research is impeded by certain challenges such as limited funding, extensive need for training required by researchers and the young people, power imbalances between researchers and youth, issues in the recruitment of a diverse sample of youth, ambiguity around reimbursing youth and multiple ethical and safety related concerns. Some potential mitigation strategies proposed to address these challenges include the need to ringfence funding for youth involvement, engage youth as reviewers of grant proposals and on ethics review boards, engage youth to recruit a more diverse sample, and consult them to design the recruitment strategies etc.
We also worked with three youth co-researchers to conduct this umbrella review and found that young people’s involvement in screening, data extraction, and analysis stages helped improve the quality of the review. We also consulted a youth advisory group to interpret the findings in light of their lived experiences in participatory workshops and to disseminate the findings to young people.
The findings of this review will inform the development of a comprehensive set of guidelines on involving young people in health research to address the limitations of the currently available guidelines in health research.

Authors

• Azza Warraitch, Trinity College Dublin
  Presenting Author

• Delali Bruce, Trinity Centre for Global Health, Trinity College Dublin, Dublin, Ireland.

• Maria Lee, Trinity Centre for Global Health, Trinity College Dublin

• Paul Curran, Trinity College Dublin

• Qusai Khraisha, Trinity College Dublin

• Kristin Hadfield, Trinity College Dublin