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Young people’s advisory groups in health research: scoping review and mapping of practices
  1. Elise Sellars1,
  2. Gabriela Pavarini1,
  3. Daniel Michelson2,
  4. Cathy Creswell1,
  5. Mina Fazel1
  1. 1Department of Psychiatry, University of Oxford, Oxford, UK
  2. 2School of Psychology, University of Sussex, Brighton, UK
  1. Correspondence to Dr Mina Fazel, Department of Psychiatry, University of Oxford, Oxford OX3 7JX, UK; mina.fazel{at}psych.ox.ac.uk

Abstract

Background Young people’s advisory groups (YPAGs) for research are comprised of children or adolescents who work with researchers to shape different stages of the research process. Their involvement is expected to ensure studies better reflect the preferences and needs of targeted youth populations. However, despite their increasing use in health research, there is little systematic evidence on the methods and impacts associated with YPAGs.

Method To address this gap, we conducted a scoping review of YPAGs in youth-focused health studies. We systematically searched MEDLINE for empirical studies in populations between 12 years and 18 years of age published in 2019. If a potential YPAG was identified, authors were contacted for additional information about the activities and level of involvement of the YPAG.

Findings Of all studies that collected primary data from persons aged 12–18 years, only 21 studies reported using youth advice during their research. This represents less than 1% of all published empirical child and adolescent studies. There was variation in the type of research activity undertaken by YPAGs and their level of involvement. Most studies involved YPAGs in co-production of research design and/or in dissemination activities. The majority of authors that responded were positive about the impact of YPAGs.

Interpretation Recommendations for consistent reporting of YPAG involvement in empirical studies include reporting on the match between YPAG and study populations, frequency/format of meetings, and the nature and level of involvement.

  • adolescent health
  • psychology
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Footnotes

  • Twitter @minafazeloxford

  • Contributors MF designed the study and drafted the manuscript. ES designed the study, drafted the manuscript, conducted the scoping review and coordinated the NeurOX YPAG involvement. GP coordinated the NeurOX YPAG involvement and helped refine the study and manuscript at all stages of the work. DM and CC helped refine the study and manuscript at all stages of the work. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

  • Funding ES and MF are funded by the National Institute of Health Research (NIHR) Applied Research Collaboration Oxford and Thames Valley. GP is funded by the Wellcome Trust (104825/Z/14/Z). The funder did not participate in the work. The views expressed in this publication are those of the author’s and not necessarily those of the NIHR, Wellcome, or the Department of Health and Social Care.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data are available upon reasonable request. All data relevant to the study are included in the article or uploaded as supplementary information. All relevant data from the scoping review are available in the article and a few supplementary survey responses are available upon request.

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