Search

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. [ABSTRACT FROM AUTHOR]

Insider–outsider relations in qualitative research have been heavily studied. Yet there is a dearth in the literature exploring how people who have experienced madness produce knowledge and overcome trying circumstances when they do qualitative mental health research with other survivors. This article fills this gap through a critical reflection on my experiences with psychosis and involuntary hospitalization and how they shaped dialogue with my participants. Situated within a narrative framework of inquiry, I reveal how self-disclosure and critical forms of relationality during interviews with 10 psychiatric survivors produced a survivor-centered knowledge that nuances biomedical understandings of mental illness and the mental health system. Practices of self-disclosure revealed how survivors and I had to navigate familial expectations as we recovered and tried to regain a sense of identity. Doing insider research also helped me overcome the periods of embarrassment and stigma in my psychosis, as I learned through critical dialogue how traumatic events can provide unique avenues for intense self-reflection and the development of greater empathy for mental health survivors. I also discuss some of the ethical concerns and limitations of having an insider status in qualitative mental health research, and how self-disclosure may present certain epistemological challenges in the research process. [ABSTRACT FROM AUTHOR]