Towards epistemic justice doing: Examining the experiences and shifts in knowledge of lived experience researchers over the course of a mental health research training programme

Abstract

Participation of people with lived experience (LE) in mental health research is vital for improving the quality and relevance of research priorities, outcomes, and knowledge translation. Inclusion of people with LE is also recognized as central for achieving health service reform including commitments to human rights, social, and epistemic justice. Although a lack of research training is cited as a barrier to LE participation, few studies have examined the value of training for, or the specific requirements of, people with LE. This study seeks to address this gap. It reports on a longitudinal, qualitative study examining shifts in experience and knowledge, and unmet needs, of people with LE over the course of a coproduced research training programme. Findings indicate that the programme enabled participants to understand the role, value, and levels of LE participation in research. Participants also stressed the importance of the 'embodied lived expertise' of LE researchers who co-delivered the training programme. Nonetheless, participants indicated that they felt unprepared for the challenges of working in systems where LE knowledge is subordinated, and experiences of being silenced and powerless could mirror those previously experienced in mental health services and the community. Participants indicated a need for training that provided them with the epistemic resources to render such experiences intelligible. Findings also indicate that training in participatory research is required for conventional mental health researchers, to support them to navigate power asymmetries and value LE knowledge contributions.

Keywords: capacity building; consumer participation; educational activities; mental health; research ethics.