Cracks that Let the Light in: Collective Reflections on Integrating Lived Experience of Psychosis in Research and Policy in the Context of a Global Commission

Lee Y.Y.; Buyanga M.; Mehta A.; Omowunmi O.A.; Ryan G.; Sunkel C.; Vasquez A.; Jones N. · Community Mental Health Journal (2023) · DOI: 10.1007/s10597-023-01118-w

Resumen

Within psychiatric research fields, there has been a marked uptick of interest in service user involvement in recent years. Nevertheless, it is often unclear how robust or impactful common forms of inclusion are, and the extent to which they have included individuals with psychosis. Using collective auto-ethnography, this paper describes the experiences of 8 academic and non-academic members of the ‘lived experience’ and participatory research workgroup of a global psychosis Commission and our navigation of power and power hierarchies, differences in background and training, and multiple vectors of identity, diversity, and privilege. We conclude that the realities of “involvement” are much messier, more fraught, and less intrinsically empowering than often signaled in calls for involvement and co-production. We nevertheless stress the power of collective dialogue and support—between and among a pluralistic group—and of honesty and transparency about challenges, barriers, and the colonial underpinnings and geopolitics of global mental health.