I want to do something positive with my experiences: The Youth Involvement in Mental Health Research project

Abstract

Consumer and community involvement in research and health services is an increasingly well recognised area of research methodology and practice, yet one which is not well documented in the published literature (Staniszewska et al., 2017). When applied specifically to youth mental health research this absence of documentation is particularly pronounced (Mawn, Welsh, Stain, & Windebank, 2015). In the instances where it has been directly examined, it has typically been from the point of view of researchers, not young people. The Youth Involvement in Mental Health Research project sought to investigate this issue by examining the characteristics, motivations and experiences of the young people involved in youth mental health research. The project specifically focused on the experiences of young people and researchers who were part of an Australian multiinstitutional cooperative research program (the Young and Well Cooperative Research Centre (the CRC)) which involved young people in every research project and at an organisational level. A multi-method approach was used involving five interconnected studies. Three studies used qualitative methods: focus groups, interviews and analysis of existing data; and two used quantitative methods: a longitudinal study and an online cross-sectional survey. Across these studies, four participant groups were considered: young people aged between 18 and 25 who were involved in the research projects of the CRC, including young people who were part of the youth advisory group of the CRC (the Youth Brains Trust), other young Australians aged 18 to 25, and researchers who conducted research as part of the CRC. This breadth has allowed the perspectives of a range of different stakeholder groups to be compared and contrasted. This study is the first comprehensive description of the young people who were involved in an extensive program of youth mental health research. The current literature is predominately small-scale studies of single instances of involvement, which are mainly focused on the researcher’s experience. By contrast, the current project’s use of five studies which each examine different facets of the young people who are involved provides a greater level of depth and breadth. The results of the project show that young people who are involved in youth mental health research have higher rates of mental ill health than the rest of the population. They are motivated to do this work to further their relationships with researchers and each other, and to gain new skills. Their involvement entails a wide range of traditional and non-traditional research activities such as being involved in project design and planning, and is largely a positive experience. The project represents an important step in the field of consumer and community involvement by highlighting the contribution of young people to this work. This group has not been consistently or sufficiently acknowledged as key informants to the work they have been involved in. Findings suggest greater effort is needed to include young people from a broader range of backgrounds such as culturally and linguistically diverse groups, and that the experiences of young people who are involved could be improved by working with young people across all stages of the research such as design, analysis and dissemination of findings. Show more