Co‐producing research with youth: The NeurOx young people's advisory group model

Abstract

Context The 1989 UN Convention on the Rights of the Child states that children have the right to be heard in all matters affecting them. The Convention inspired a surge in research that investigates young people's perspectives on health and wellness‐related concerns and that involves children as ‘co‐researchers'. Young people's advisory groups (YPAGs) are a widely used method to enable young people's involvement in all research stages, but there is a lack of academic literature to guide researchers on how to set up, run and evaluate the impact of such groups. Objective In this paper, we provide a step‐by‐step model, grounded in our own experience of setting up and coordinating the Oxford Neuroscience, Ethics and Society Young People's Advisory Group (NeurOx YPAG). This group supports studies at the intersection of ethics, mental health and novel technologies. Our model covers the following stages: deciding on the fit for co‐production, recruiting participants, developing collective principles of work, running a meeting and evaluating impact. Results We emphasize that throughout this process, researchers should take a critical stance by reflecting on whether a co‐production model fits their research scope and aims; ensuring (or aspiring to) representativeness within the group; valuing different kinds of expertise; and undertaking on‐going evaluations on the impact of the group on both the young people and the research. Conclusion Adopting a critical and reflective attitude can increase researchers' capacity to engage youth in democratic and inclusive ways, and to produce research outputs that are aligned with the target audience's needs and priorities.

Engaging Youth in the Bipolar Youth Action Project: Community-Based Participatory Research

“…Establishing principles of work is foundational to creating positive working relationships within a peer research group [ 47 ], which in turn can equalize and enhance patient-led research [ 45 ]. The timeline of the Bipolar Youth Action Project allowed consideration towards developing a common workflow that suited the needs of the Youth Action Group.…”

“…In the application of community-based participatory research with seldom-heard populations of youth, as in the Bipolar Youth Action Project, a considered approach to ethics is necessary to ensure safety [ 47 ]. Most evident is the need to ensure that health professionals are available should distress occur, and to carefully convey sensitive information [ 40 , 47 ].…”

Guidance on development and operation of Young Persons’ Advisory Groups

“…Until fairly recently such information was sparse among published documents 22–26. The literature review was adequate for the tool’s development because it enabled a targeted search for published works pertaining to themes identified from the interviews.…”

Children and young people’s experiences of living with developmental coordination disorder/dyspraxia: A systematic review and meta-ethnography of qualitative research

“…Moreover, future studies should be designed with Public and Patient Involvement from the outset to ensure that the concerns and priorities of children and young people with DCD are addressed in research conducted. Guidelines on co-producing research with young people exist and can provide a framework to support the inclusion of children and young people’s voices throughout the research process [ 89 , 90 ].…”