Introduction: In spite of adolescents' rights to be involved in decisions that concern their health and life, limited research has been published reporting on their involvement in mental health research. Therefore, we aim to present experiences and reflections based on the involvement of adolescents in mental health research, to describe the collaborative relationship between researchers and coresearchers, including the values that underpin their collaboration.
Methods: An autoethnographic approach was used, combined with group reflections. The process was jointly developed, carried out and analysed by adolescent coresearchers and the project's lead researcher over a period of 2 years. The article is jointly authored by the researcher and the ten coresearchers.
Results: Six themes were developed to describe our collaborative relationship, resulting in the involvement of adolescents in decisions about research priorities; in planning and carrying out the research; through to analysis, dissemination and communication of results. The themes include: (1) Commitment motivated by altruism, personal interests and a common purpose; (2) Inclusiveness and support to reduce social uncertainty and strengthen collaboration; (3) Reduced power differentials while ensuring clarity of roles and tasks; (4) Diversity in representation to expand the perspectives of ‘the adolescent voice’; (5) Self‐determination—supporting adolescents' involvement in decision‐making processes; and (6) Flexible and systematic project management. The themes describe the collaboration, the underlying values and motives, the challenges faced and how they were overcome.
Conclusion: This self‐reflective process describing a 4‐year collaborative research project resulted in the development of recommendations for involving adolescents in mental health research. The recommendations could potentially contribute to a change of ‘research culture’ to expand the currently limited involvement of adolescents in research.
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. When applied specifically to youth mental health research this absence of documentation is particularly pronounced. 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 x 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.
Background: Involving young people in co-designing and conducting youth mental health research is essential to ensure research is relevant and responsive to the needs of young people. Despite this, many barriers exist to meaningful involvement.
Aims: To explore the experiences, barriers and enablers to partnering with young people for mental health research.
Methods: Semi-structured, qualitative interviews were conducted with 19 researchers employed at a youth mental health research institute in Australia. Thematic analysis was used to analyse these data.
Results: How researchers conceptualise youth participation was related to how confident and competent they felt engaging with young people. Attitudes and beliefs about the impact of youth participation on research quality were related to emotional factors, such as feelings of anxiety or excitement. Whether researchers engaged in youth participation was affected by resources, culture and the structures that their organisation had in place.
Conclusion: Researchers generally want to engage young people in their work, but several factors can hinder this. By understanding the challenges facing researchers, and drawing on the factors that encourage and support those already engaging with young people, a framework to support genuine and meaningful youth participation in mental health research can be developed.
The National Mental Health Consumer and Carer Forum and the National Primary Health Network Mental Health Lived Experience Engagement Network acknowledge the Traditional Custodians of the lands and waters on which we work and live on across Australia. We recognise their continuing connection to land, waters, culture and community. We pay our respects to Elders past and present.
“A lived experience recognises the effects of ongoing negative historical impacts and or specific events on the social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples. It encompasses the cultural, spiritual, physical, emotional and mental wellbeing of the individual, family or community.
“People with lived or living experience of suicide are those who have experienced suicidal thoughts, survived a suicide attempt, cared for someone through a suicidal crisis, been bereaved by suicide or having a loved one who has died by suicide, acknowledging that this experience is significantly different and takes into consideration Aboriginal and Torres Strait Islander peoples ways of understanding social and emotional wellbeing.” - Aboriginal and Torres Strait Islander Lived Experience Centre
We welcome Aboriginal and Torres Strait Islander people to this site and invite them to provide any feedback or items for inclusion.
We also recognise people with lived and living experience of mental ill-health and recovery and the experience of people who are carers, families, kin, or supporters.