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
摘要
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.
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.