The way we do things matters: the deep integration of lived experience in the a/part of the crowd project to respond to loneliness in young adults

Loneliness in youth (15–24 years old) is increasing. The impacts over the life course are more fully recognised and require co-designed responses. A participatory designed project, a/part of the crowd, has led to a web-delivered, preventive response to loneliness with young adults 18–25 years old. As a part of this, an integrated Lived Experience Advisory Group with co-researcher roles was established to centre youth perspectives and to grow research capabilities. The co-designed response was developed from 128 short stories, poetry, artworks (hand-drawn, digital and collage), and music submitted by 18 to 25-year-olds in Australia. Ethics approval was granted for the larger project. A 12-member Lived Experience Advisory Group provided advice on design, recruiting, and promoting. They shared impressions on data and supported elements of the co-designed web space and steps for further translation. Five members of the LEAG were also appointed as co-researchers. In this paper, we outline the Lived Experience Advisory Group establishment and role, and share co-reflections on the contributions made and how to embed lived experience in the research process and practice. Five co-researchers worked alongside the interdisciplinary research team. Reflections identified the importance of a project coordinator to maintain communication and connection, and that collaborative research meetings supported working alongside as a team sharing interpretations and discussing research. The Lived Experience Advisory Group role has included advising on design elements for the co-designed response, and user testing, which was recently made publicly available. The advisory group and co-research roles created a mechanism to increase participation in decision processes and share roles in research activities. Co-researchers have been trained to analyse content, and frequent reflective meetings have fostered understanding of current lived realities for 18- to 25-year-olds, and grown new collaborations and activities. This has developed the capabilities of co-researchers and the wider research team in youth-centred approaches to loneliness research. Members of the LEAG and co-researchers have now adopted additional roles in other activities supporting an element of implementation into mental health research translation. This led to an example of an integrated lived-experience approach to adopt within research studies in the future. Loneliness is becoming more common for young adults and has large personal and societal impacts. Young adulthood is a time of big life changes, and these can lead to feelings of loneliness. To understand and address this, we must work with people who have lived experience of loneliness. We also need to work together to develop effective supports and solutions. a/part of the crowd seeks to understand how young adult experience loneliness through the lens of big life changes. The broader project has used a participatory approach to gather 128 stories from adults aged 18–25 about their experience of loneliness using creative methods (these findings are reported separately). This has supported a deeper understanding of loneliness than a biomedical approach would have provided. The project involved people with lived experience of loneliness working as advisors and as co-researchers to support activities, which we outline in this paper. This includes reflections from a 12-person Lived Experience Advisory Group as part of writing and during collaborative research meeting discussions. We also outline how safe opportunities to discuss loneliness were created. a/part of the crowd has enabled us to learn together with creative tension and build skills across the team. This model has required intentional work and resourcing from the university-based project leads. This is essential to ensure young adult with a lived experience of loneliness are well supported. Finally, we prioritised young adult most affected by loneliness. They guided this work and co-designed its outcomes.