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.

backgroundLoneliness 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.

methodThe 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.

resultsFive 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.

conclusionThe 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.