— Models, Guidelines & Frameworks
What should be done and how it can be done.
Summary
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.
Abstract
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.
Abstract
Purpose: To explore the views and opinions of nonconsumer researchers to the concept of an Expert Consumer Researcher Group.
Design and methods: Qualitative exploratory involving individual interviews with nonconsumer mental health researchers experienced in working collaboratively with consumer researchers. Data were analyzed thematically.
Findings: Participants viewed the concept positively, albeit with caution. Perceived advantages included: greater visibility and enhanced access; collegiality; sharing and creating expertise; broader acceptance; making it mandatory; and structure and location. Participants were concerned about potential tokenism and implementation barriers.
Practice implications: Consumer involvement enhances the quality and relevance of research, potentially impacting clinical practice.
Abstract
As involvement of consumers/survivors in planning, delivery, and evaluation of services has increased, expectations of authentic and effective engagement, versus tokenism, have also risen. Different factors contribute to, or detract from, authentic engagement. Writing from mental health consumer/survivor and nursing positioning, respectively, we aim to redress the common problem of including only a narrow range of views and voices.
This paper introduces a conceptual model that supports leaders in research, clinical, service, and policy roles to understand the necessity of engaging with a broader spectrum of consumer/survivor views and voices. The model draws on published consumer/survivor materials, making explicit diverse experiences of treatment and care and identifying the subsequent rich consumer/survivor advocacy agendas. We propose that strong co-production is made possible by recognizing and welcoming consumer/survivor activist, facilitator, transformer, and humanizer contributions. The conceptual model forms the basis for a proposed qualitative validation project.
Abstract
Consumer and carer involvement in mental health research is a growing and developing field. Whilst there has been policy and in-principle support for such involvement from governments around the world, lived experience researchers conducting academic research in partnership with other consumers and carers remains uncommon.
ACACIA: The Australian Capital Territory Consumer and Carer Mental Health Research Unit is based at The Australian National University and employs academic researchers with lived experience to undertake research directly relevant to the needs of mental health consumers and carers with the aim of influencing policy and practice. In this study, we share our experience of developing and conducting research within ACACIA to provide a model for meaningfully engaging mental health consumers and carers throughout the research process.