What should be done and how it can be done.
Background: While governments are urging adult mental health services to support consumers in the context of their family, there is little information about what family focused practice is, nor how it might be enacted.
Methods: Informed by the principles of Community Based Participatory Research, workshops were held in three rural Australian communities in 2015 to discuss the meaning of family focused practice and how such practices might be promoted.
Results: Participants described the need to raise community awareness about mental illness and provide practical support to the family. Participants emphasized the importance of practitioners genuinely communicating with consumers and their families about mental illness and the need for collaborative care and treatment planning. They also highlighted the challenges of living in rural places and posed some solutions.
Conclusion: On the basis of the results and previous literature, we developed a model of family focused practice that outlined various stakeholders and their enactments. The model has the potential to inform policy, professional development and practice guidelines.
Background: Participatory research has as a central tenet that power relations between researcher and researched be reduced. In the last 20 years, a substantial literature has demonstrated the difficulties inherent in this as well as the troublesome nature of certain central concepts.
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.
Principle 3: Support lived experience, collaboration and leadership in mental health
Actions Towards Change
What is known of the subject: Consumer participation in mental health services is an expectation articulated through mental health policy. Consumers as researchers could contribute significantly to mental health services. Barriers to participation are significant and limit consumer involvement.
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.
Notable barriers have been identified as impeding consumer researcher positions that must be better understood and ultimately addressed. The aim of this research was to better understand these barriers from the perspectives of non-consumer researchers who have worked collegially with consumer researchers. We developed a self-report survey, Consumers as Researchers in Mental Health (CaRiMH) and administered it to non-consumer mental health researchers in Australia and New Zealand.
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.
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.