Lived Experience Collaboration in Eating Disorders Research: Perspectives of Those With Lived Experience, Carers,...

The importance of including people with a lived experience (LE) of eating disorders (ED) in the development and conduct of research is being recognised for the value it brings to the field. While the risks and benefits are beginning to be understood, there is still a lack of clarity around how to support LE partners through the process. This study examined perspectives on LE collaboration in ED research from individuals with personal LE, carers, clinicians, and researchers.

An online survey yielded 122 participants: 71 with personal LE, 37 carers, 21 clinicians, and 18 researchers.

While researchers generally supported LE collaboration, carers were more hesitant. Across groups, the main perceived benefit was producing more meaningful research and improved treatments, while the primary concern was the risk of relapse for LE contributors. Views varied on the appropriate illness stage for LE involvement, though most agreed that readiness should be assessed collaboratively. Researchers strongly endorsed the development of ED-specific guidelines for LE engagement.

Overall, each of the groups valued LE input but identified a need for clearer guidance on safe and effective collaboration.