RT Journal Article
SR Electronic
T1 Young people’s advisory groups in health research: scoping review and mapping of practices
JF Archives of Disease in Childhood
JO Arch Dis Child
FD BMJ Publishing Group Ltd and Royal College of Paediatrics and Child Health
SP 698
OP 704
DO 10.1136/archdischild-2020-320452
VO 106
IS 7
A1 Elise Sellars
A1 Gabriela Pavarini
A1 Daniel Michelson
A1 Cathy Creswell
A1 Mina Fazel
YR 2021
UL http://adc.bmj.com/content/106/7/698.abstract
AB 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.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.