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Background: Collaboration between researchers who have lived experience of mental illness and services (consumer researchers) and mental health researchers without (other mental health researchers) is an emergent development in research. Inclusion of consumer perspectives is crucial to ensuring the ethics, relevancy and validity of mental health research; yet widespread and embedded consumer collaboration of this nature is known to be impeded by attitudinal and organisational factors. Limited research describes consumer researchers’ experiences of barriers. Other mental health researchers are key players in the co-production process yet there is also a paucity of research reporting their views on barriers to collaborating with consumers.
Aims: To explore other researchers’ views and experiences on partnering with consumer mental health researchers in Australia and New Zealand.
Methods: Exploratory qualitative design. Eleven semi-structured interviews were conducted with mental health researchers. Interviews were recorded, transcribed and thematically analysed.
Results: Four themes concerning barriers to collaborating with consumers (hierarchies, status quo, not understanding, paternalism), and one theme on addressing the barriers (constantly chipping away) were identified.
Conclusions: It is suggested that multifaceted strategies for advancing collaboration with consumers are most effective. It is imperative to attend to several barriers simultaneously to redress the inherent power disparity.
Background: Interest in the involvement of members of the public in health services research is increasingly focussed on evaluation of the impact of involvement on the research process and the production of knowledge about health. Service user involvement in mental health research is well-established, yet empirical studies into the impact of involvement are lacking.
Objective: To investigate the potential to provide empirical evidence of the impact of service user researchers (SURs) on the research process.
Design: The study uses a range of secondary analyses of interview transcripts from a qualitative study of the experiences of psychiatric patients detained under the Mental Health Act (1983) to compare the way in which SURs and conventional university researchers (URs) conduct and analyse qualitative interviews.
Results: Analyses indicated some differences in the ways in which service user- and conventional URs conducted qualitative interviews. SURs were much more likely to code (analyse) interview transcripts in terms of interviewees' experiences and feelings, while conventional URs coded the same transcripts largely in terms of processes and procedures related to detention. The limitations of a secondary analysis based on small numbers of researchers are identified and discussed.
Conclusions: The study demonstrates the potential to develop a methodologically robust approach to evaluate empirically the impact of SURs on research process and findings, and is indicative of the potential benefits of collaborative research for informing evidence-based practice in mental health services.
Purpose: User involvement in research is entering the mainstream of traditional mental health research. In practice, there are diverse ways in which the process of involvement is experienced by mental health service user researchers. This paper aims to explore two diverse experiences of involvement by the researcher.
Design/methodology/approach: Auto-ethnography is the research methodology used in this study; it combines a process of reflective writing and critical analysis which enables the author to explore experiences of being both a service user and academic researcher. Two accounts of the author’s involvement in mental health research are presented: one which builds on a consultation model and the other based on co-production principles.
Findings: Experiences of power-sharing and collaborative decision-making, alongside disempowerment, are discussed, leading to exploration of the theoretical and practical processes for promoting participation of users in research.
Research limitations/implications: The research is limited because it is undertaken by one individual in a local setting, and is therefore is not generalisable; however, it provides useful insights into the diverse processes of involvement that many service users experience.
Practical implications: Recommendations are presented to support the involvement of service users in research, with final remarks offered considering the possible future implementation of this still emerging tradition.
Originality/value: This paper reflects on the experiences of one service user academic involved in research and highlights diverse experiences of both empowering and disempowering involvement, providing recommendations for best practice.
Background: In the field of mental health research, collaborative and participatory approaches in which mental health service users actively contribute to academic knowledge production are gaining momentum. However, concrete examples in scientific literature that would detail how collaborative research projects are actually organized, and how they deal with the inherent challenges are rare. This paper provides an in-depth description of a three-year collaborative project that took place in the wider context of a mixed-method process evaluation of innovative models of psychiatric care in Germany.
Methods: The in-depth description we provide here draws on a vast body of notes and records that originated from numerous meetings and sessions. The research group continuously and systematically reflected on their collaboration itself using the interpretative method of “interactive interviewing,” which included that also the personal memories of the researchers were collectively re-discussed before and during the process of writing. Our concrete experiences as a group were then contextualized with and analyzed in the light of more general challenges that are central to collaborative research in general.
Results: Performing collaborative research requires unconventional thinking and improvisation in order to find creative solutions for practical problems and to overcome the structural obstacles inherent to the process of academic knowledge production. An atmosphere of mutual trust and respect within the group is crucial, and continuous self-reflection or supervision can be largely beneficial. Challenges mainly originate from the vast heterogeneity that characterizes the researchers, usually including large differences in economic, cultural, and social capital.
Conclusion: Collaborative research in the field of psychiatry is designed to bring together researchers with widely diverse backgrounds. Emerging conflicts are important parts of knowledge production but also exceptional opportunities to negotiate research ethics, and potential vehicles for personal growth and transformation. Success or failure of collaborative research largely depends on how divergences and conflicts are articulated, mediated, and reflected. This also holds true in the light of the power asymmetries within the research team and the structural power inherent to the engines of academic knowledge production.
Background: The perspectives of mental health consumers and carers are increasingly recognised as important to the development and conduct of research. However, research directions are still most commonly developed without consumer and carer input. This project aimed to establish priorities for mental health research driven by the views of consumers and carers in Australia.
Method: The project was conducted in two studies. Firstly, a face-to-face discussion forum held in the Australian Capital Territory (Study 1; n = 25), followed by a national online survey (Study 2; n = 70). Participants in both studies were members of the community who identified as a mental health consumer, carer or both. In Study 1, participants developed topics for mental health research in small group discussions, then voted on which topics, developed across all groups and sorted into thematic areas, were a priority. An online survey was developed from these research topics. Study 2 participants were asked to rate topics on a 5-point priority scale and rank the relative importance of the highest-rated topics.
Results: At the forum, 79 topics were generated and grouped into 14 thematic areas. Votes on priorities were spread across a large number of topics, with the greatest overall support for research relating to integrating care that is sensitive to past experiences of trauma into mental health service delivery (trauma-informed care). Survey responses were similarly spread, with the majority of research topics rated as important by at least 50% of participants and no clear individual priorities for research identified. Amongst items rated as important by approximately 80% of participants, key research areas included the delivery of services, and consumer and carer involvement.
Conclusions: Australian mental health consumers and carers demonstrate a strong understanding of the mental health system and its inadequacies. Although clear specific priorities are difficult to establish, consistent areas of focus are services and the role consumers and carers can play in their improvement. However, for consumer and carer views to be at the forefront of research, it is important to regularly update research agendas and work in partnership across the whole research process.
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.