— Models, Guidelines & Frameworks

Aims: (1) To describe and illustrate a new form of participatory research where the researchers share at least something with the participants in the research. That is, all are users of mental health services. (2) To reflect on the novel form of participatory research in terms of whether it shares, mitigates or avoids some of the difficulties of more traditional forms and to pose the question: what is a mental health community?

Results: The model described is new in that the researchers have a different status than in conventional participatory research. But it is illuminated by and itself illuminates issues of power relations in research and difficulties in reducing that; gatekeepers and the exclusion of crucial groups of service users; the confusion of demographic representativeness with the silencing of marginalized perspectives; coming out of the academic space and the shifting issue of what counts as ‘communities’ in mental health.

Conclusion: The examples given are moderate in scale and relevant to social psychiatry. Yet they may change methods and the definition of participatory research and at the same time be vitiated by but also illuminate dilemmas already identified in the literature albeit in different formations.

• Develop leadership in lived-experience research to strengthen partnerships with people with lived experience of mental ill health and caring to enrich the value of the research that is being developed and help navigate ethical concerns regarding confidentiality, consent and privacy.
• Remove barriers and create new pathways for participation to promote study and career pathways in research for people with lived experience of mental ill health and caring.
• Develop engagement standards including guidelines and best-practice for lived experience involvement in research, covering co-development and co-production of research.
• Develop purpose-built environments to encourage co-location of key stakeholder or research groups.
• Strengthen the inclusion of diverse populations as partners in research, including culturally and linguistically diverse communities, people who identify as LGBTIQ+ and other priority population groups.
• Support and promote lived-experience researchers to strengthen the significant contribution they bring to mental health research through their critical expertise.

What the paper adds to existing knowledge: Enhanced understandings of collaborative relationships between consumer and nonconsumer researchers. Researchers from the health disciplines find value in consumer involvement in mental health research. These researchers can support and facilitate consumer research by being allies to consumer researchers.

What are the implications for practice: Understanding the role of allies is necessary to strengthen their capacity to support consumer researchers. Involving consumers in mental health research is likely to lead to improved practice.

Findings suggest a lack of organizational structures to support both consumer research and capacity building of consumer researchers. Most consumer researchers were employed casually with no set hours. Although consumer researchers were typically remunerated, inadequate funding and inflexibility of employment were highlighted as major barriers. There was variation in opinion about token involvement of consumer researchers and some uncertainty about whether these roles, where they existed, were actively resisted. Despite the acknowledged barriers, participants were positive about collaborations with consumer researchers. Overall, findings suggest consumer research is unlikely to proliferate without greater attention to organizational structures. A systematic and strategic approach to advancing mental health consumer research is required, including extra-organizational policy factors.