Youth Advisory Boards: Perspectives and Processes

Abstract

The United Nations Convention on the Rights of the Child requires researchers to give due weight to youth voices on matters that impact them [1]. Furthermore, global events in the past year have led to calls for increased youth engagement in revisiting policies, systems, and communities impacted by . However, most adolescent-centered research studies involve adolescents only as participants. A study that reviewed community-based participatory research publications found that only 15% of studies described partnering with youth in some phase [3]. Previous work has illustrated processes to incorporate youth into civic planning [4], patient advisory boards [5], and educational environments [6]. Publications describing adolescents as research advisors are notably missing from the empirical literature. This commentary describes key considerations for researchers interested in integrating adolescent advisors into their work and shares our team's experience developing and maintaining two youth advisory boards (YABs) with distinct purposes.

The Your Rheum story: involvement of young people in rheumatology research

“…In agreement with previous authors [ 4 ] who have advocated for the importance of a shared learning and development, other key youth development opportunities taken up by the young people include facilitating a session at a national rheumatology conference, presenting at 9 other conferences (7 national, 2 international) in addition to developing a short animation to support recruitment of new members [ 20 ]. Your Rheum has also supported members in getting involved in other external activities including: writing book chapters (e.g.…”

“…Sellars et al [ 3 ] recently reviewed the involvement of youth advisory groups in health research involving 12–18 year olds published in 2019 and less than 1% utilised the advice and expertise of young people during the research. In recent years however, the involvement of young people at all stages of health research, from priority setting right through to dissemination, is widely advocated [ 4 – 10 ]. Such involvement is also considered to be important ethically and, perhaps most important of all, has been called for by young people themselves [ 11 , 12 ].…”

Working with a young people’s advisory panel to conduct educational research: Young people’s perspectives and researcher reflections

“…This is particularly pertinent for adolescents (hereafter referred to as young people), as academic literature often focuses on the issues affecting them but rarely includes them as collaborators in the very research processes which seek to understand, define, and change their behaviour (Jacquez et al 2013). Instead, young people are usually included only as participants (Moreno et al 2021).…”

Programming and Researching With Youth in Cultural Institutions – a Brief Reflection on a Cross-Institutional Youth Advisory Board

“…Nevertheless, the level of participation youth advisory boards gives young people is unique. Moreno et al (2021) reflect on the key aspects to consider when establishing a youth advisory board: purpose and values, group planning, recruitment and selection, and youth advisory board meetings. Although aimed at researchers interested in integrating youth into their work as advisors, their conclusions have many similarities with the modus operandi of youth advisory boards in museums.…”