Finding and Adapting methods of Inclusive Research (FAIR)

Introduction: In 2023, 1 in 5 people aged 8 – 25 years old had a probable mental health disorder. This statistic has been steadily rising since 2017. Research that collaborates equitably with young people who have lived experience of mental health problems is needed to identify opportunities for prevention and early intervention. This is of particular importance for people most at risk, who are often not represented in research. Research question: How can mental health research be conducted in a more inclusive way, that foregrounds the voices of marginalised people (aged 16 – 24) with lived experience whilst maintaining scientific rigour? Aims: This research proposal is being conducted alongside the ORIGIN research programme. There are three specific aims that link to different elements of the broader programme of work: 1. To explore the possibility of co-designing stories at scale through schools. 2. To develop a toolkit that can be used by researchers and young people to implement youth-led strategies in conducting research. 3. To address research questions generated by young people when co-analysing data, specifically around the experiences of underrepresented groups who self-report Autism. Methods: A collaboration with The Day, an online e-learning platform, will support work in 10 schools to facilitate students to develop stories based on arts and culture. A diverse range of schools including those from coastal, rural and urban areas will be recruited from the 900 schools that currently subscribe to The Day. Stories will be published on the Student Voices website. This data will be interpreted alongside young people. Six co-design days will be convened with a range of key stakeholders such as young people, researchers and people from charitable organisations to develop a toolkit that can be used to facilitate the implementation of youth-led strategies in research. During the first 4 meetings we will develop the resource to address all elements of conducting research from designing a research question, through to randomised controlled trials and data analysis. The resource will then be shared more broadly and feedback shared and addressed in the final two co-design meetings. Data from narrative inquiry interviews has already been collected in the ORIGIN research programme. Twenty of these interviews relate to people who have shared that they have Autism. These transcripts will be co-analysed with young people using thematic analysis to better understand the experiences of a diverse group of autistic young people. Throughout the research we will work in collaboration with young people to document and share their experiences of implementing this work and what impact it has had on them. Impact and Dissemination: Findings will be shared in newsletters (The Day, 18,350 members; ORIGIN 277 members), academic publications and webinars. All communications about this work will be co-curated with the young people who have contributed to the implementation of the research. The Autism Act (2009) is currently under review. The team at PolicyConnect, an all party parliamentary think tank will convene a parliamentary symposium to facilitate the sharing of our findings in policy spaces. This work will inform how future mental health research can be more equitably and inclusively conducted in collaboration with underrepresented young people.