‘Wisdom Is Knowledge Plus Experience’: Qualitative Study of Lived Experience and Researcher Perspectives on Suicide Research Co-Production

Abstract

The need for involvement of people with lived experience of suicide in the conduct of suicide research and intervention has been recognised in research and policy. However, there is limited understanding and guidance on how to support their genuine and safe engagement in suicide research. This qualitative study considered the perspectives of 19 people with lived experience of suicide, and 17 researchers engaged in suicide-related research to explore their needs, expectations and experience of co-produced suicide-related research. Data was collected between October and December 2020 via semi-structured interviews. Thematic analysis resulted in five themes: (1) towards co-production, (2) power imbalances, (3) heterogeneity of lived experience, (4) enhancing safety and (5) value of co-production. Participants considered lived experience involvement at all stages of research to improve research impact and outcomes. However, persisting power imbalances were experienced by participants and participatory approaches did not always align with existing research systems and organisational structures. Complexities identified by participants related to accommodating different skills, experiences and social identities of those with a lived experience perspective and balancing safeguarding principles with strength-based approaches that may capitalise on participants' existing strengths. Delphi guidelines developed from an associated consensus study on active involvement of people with lived experience of suicide in suicide research address some of the concerns mentioned by study participants and form a useful resource to guide future research endeavours.