Affiliation:
1. Faculty of Health, University of Technology Sydney, Australia
2. Northern Sydney Local Health District, Sydney Australia
3. University of Sydney, Australia
4. Black Dog Institute, Australia
5. University of Notre Dame, Australia
Abstract
Internationally, lead agencies and consumer movements emphasise the need for high-level research participation in mental health. However, evidence suggests that people with lived experience tend to be recruited as subjects rather than as active agents in research, or are consulted in tokenistic ways. Although participatory research has the potential to rectify epistemic disparities, few studies have grappled with how to move from exclusion and tokenism to high-level research participation. This paper describes a qualitative co-evaluation of a co-produced model of research partnership, Raising the Bar, which involved deliberate establishment and facilitation of six participatory research teams, comprising 28 lived experience and ‘conventional' mental health researchers. Findings indicate that the theoretical elements of the model set the bar high from the outset, supporting research teams to address inconsistencies in knowledge about participation. It also provided researchers with the competencies and resources to undertake participatory research in egalitarian team structures, and to negotiate new forms of non-traditional research outputs - thereby challenging whom research might be for and how it might be made accessible. Finally, the model shifted collective meanings about research, lending credibility to participatory practices, which came to be seen as essential for meeting the needs of affected communities. Nonetheless, systemic barriers to participatory research remain, and need to be recognised and acted upon to promote a culture that supports high-level research participation.
Funder
Mental Health Commission of NSW
Cited by
4 articles.
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