Working with children and young people in research: Supportive practices and pathways to impact

Abstract

Children and young people have much to contribute to the design and delivery of health research and care. Nevertheless, there are multiple barriers to meaningful and impactful involvement of children and young people. This narrative review synthesised existing literature on the involvement of children and young people as partners in health research. Authors screened electronic databases and reference lists to identify relevant studies. Data were extracted on how involvement was described, what young people contributed to, and the impact of their involvement. The review identified 15 reports; these reported researcher observations and findings from focus group discussions and questionnaires about the involvement. Impacts recorded in these studies included influence on research; outputs from involvement activities; shifts in researchers’ attitudes; a sense of achievement in young people; and fulfilling relationships. These impacts were associated with principles being followed: building relationships over time to allow for unexpected involvement in the research, flexibility so young people could contribute in ways that work for them, and training. Methods adapted to be youth-appropriate such as visual aids and icebreaker games also enabled impact. Impactful involvement relies on processes that respond to young people’s preferences for engagement and activities that support them to share their views.