Ideas of and issues in participatory research including overcoming barriers.
In this episode Karenza Louis-Smith talks with Grace and Donna who work at ermha365 as peer workers, with lived experience of mental health challenges. She is joined by Sharon Sherwood who leads all of ermha365’s mental health programs and services.
Consider what is regarded as knowledge about mental health. Who created that knowledge? What opportunities did people who experience mental health challenges have to contribute to that knowledge; knowledge that informs organizational and social responses to their experiences? We imagine not many. One means to knowledge production is co-produced research; where people who the research is aimed to impact are central contributors to the entire process.
This centring requires a shift in control that does not simply happen. Co-research is a transformational approach that requires a foundational rethink of power and epistemology – who is understood as a knower and how others might be excluded from this identity. This chapter outlines the authors’ experience of being involved in a co-research project in a youth residential mental health setting. We explore the foundational principles and concepts of co-research, outline some of its challenges and possibilities, and use our experiences to highlight the transformative potential – both personally and professionally – of genuine co-research.
A range of barriers that impede collaborations between consumer researchers and other researchers have been identified, despite clear acknowledgement of the benefits of this approach in the literature. Recent research has questioned whether the costs of collaborative research outweigh the benefits. The overarching aim of the current study is to better understand non-consumer researchers' attitudes to, and issues concerning, engagement with consumer researchers.
Non-consumer researchers from mental health disciplines were invited to participate in the cross-sectional Consumers as Researchers in Mental Health survey, and to respond to open-ended questions about their experiences of collaborative research with consumer researchers. The findings demonstrate a range of benefits associated with collaborations with consumer researchers - including increased relevance and credibility of research, and greater translation of research findings into changes in health policy, service, research and education. Collaborations were found to be varied and not limited by research design, decision-making styles, or research topic. Understanding these benefits within the context of identified barriers can make an important contribution to the proliferation of mental health consumer researcher roles.
Non-consumer researchers collaborating with consumer researchers can benefit from greater relevance of research, and improved congruence between research processes and health policy. As with all research collaborations, such partnerships are both constrained and facilitated by research ecosystems. However, it seems that collaborations with consumer researchers are impacted in particular ways by the research ecosystem.
Drawing on ecological systems theory, this study aims to improve understandings of how ecological structures impact collaborations between non-consumer and consumer researchers. Interviews were conducted with 11 non-consumer researchers from a range of mental health disciplines about their experiences collaborating with consumer researchers. One theme developed through analysis of the data set related to the research ecosystem. Data from this theme were extracted and discursively analysed using the principles of discursive psychology. Findings emphasise distinct factors that influence collaborations at each level of the ecosystem, encompassing both local research culture and broader research systems. Findings suggest that external pressures (such as deadlines for funding applications, or bureaucratic processes) from the broader ecosystemic levels need to be challenged at the local collaboration level. Non-consumer researchers might support collaborations through, for instance, working to create enhanced flexibility in research timelines, or making time for relationship building, thus fostering more meaningful collaborations.
Service user involvement in mental health research is on the international political agenda, for example mirrored by an emphasis on user involvement in funding of research. The idea is that service users contribute with their lived experiences of mental distress to the research process and thereby heighten the quality and relevance of the research.
The purpose of this scoping review was to identify and evaluate empirical research of how mental health service users actually partake in collaborative research processes and to summarize this research in dialogue with mental health user-researchers. The review included 32 studies. Main findings indicated that actual involvement of service user-researchers in research processes encompassed a complex set of precarious negotiation practices, where academics and service user-researchers were positioned and positioned themselves in alternative ways. The review accounts for how mental health service users were involved in collaborative research processes. The extracted themes concerned: (i) Expectations of research processes, (ii) Contribution to research processes, and (iii) Training and learning from research processes. The study reveals that collaborative research in mental health requires changes to traditional research practices to create and support genuine collaborative partnerships and thereby avoid tokenism and power inequalities.
The National Mental Health Consumer and Carer Forum and the National Primary Health Network Mental Health Lived Experience Engagement Network acknowledge the Traditional Custodians of the lands and waters on which we work and live on across Australia. We recognise their continuing connection to land, waters, culture and community. We pay our respects to Elders past and present.
“A lived experience recognises the effects of ongoing negative historical impacts and or specific events on the social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples. It encompasses the cultural, spiritual, physical, emotional and mental wellbeing of the individual, family or community.
“People with lived or living experience of suicide are those who have experienced suicidal thoughts, survived a suicide attempt, cared for someone through a suicidal crisis, been bereaved by suicide or having a loved one who has died by suicide, acknowledging that this experience is significantly different and takes into consideration Aboriginal and Torres Strait Islander peoples ways of understanding social and emotional wellbeing.” - Aboriginal and Torres Strait Islander Lived Experience Centre
We welcome Aboriginal and Torres Strait Islander people to this site and invite them to provide any feedback or items for inclusion.
We also recognise people with lived and living experience of mental ill-health and recovery and the experience of people who are carers, families, kin, or supporters.