A research project investigating the lived experience of severe mental health problems and supported decision-making (SDM) from multiple perspectives.
Australian Research Council
The Mental Health and Supported Decision Making (SDM) project addresses therapeutic management, the broader social and cultural significance of psychiatric diagnosis (including bipolar disorder, psychosis, schizophrenia and major depression), and the implications for mental health services of the 2014 Victorian Mental Health Act and its emphasis on supported decision-making and a recovery framework.
This innovative and interdisciplinary project has three main components:
(1) narrative interviews with people with psychiatric diagnoses, family carers, psychiatrists, and other mental health / allied health practitioners about their experiences and perspectives of living with or caring for someone with a psychiatric diagnosis, with a particular focus on support in relation to making decisions about care and treatment;
(2) an international comparative analysis of supported decision-making laws, policies and programs; and
(3) the development of new and innovative therapeutic practice, with clear mechanisms to support people in clinical and other settings to actively participate in decision-making about their treatments.
- To better understand the phenomenology and hermeneutics of living with a psychiatric diagnosis;
- To systematically document the experiences of family carers of people with a psychiatric diagnosis, so as to identify how they could be better supported in providing care;
- To systematically document the experiences of psychiatrists and other mental health practitioners in their therapeutic alliances with people living with a psychiatric diagnosis when determining treatments and other supports and services;
- To conduct an international comparative analysis of supported decision-making laws, policies and programs;
- To explore how the results of these overlapping areas of research might be used to inform therapeutic support in the context of psychiatric diagnosis;
- Through analysis and synthesis of all datasets, to develop options for supported decision-making for implementation through clinical and other relevant services so as to provide better support for service users; and
- To enhance opportunities for self-determination and social participation for people using the mental health care system.
Narrative interviews were conducted with 29 people with a psychiatric diagnosis, 29 family carers, and 32 mental health professionals (psychiatrists, peer support workers, social workers, nurses, occupational therapists and psychologists). Interviews with people with lived experience of a psychiatric diagnosis and family carers were used to inform the development of two online resources.
People with lived experience of a psychiatric diagnosis were invited to reflect on and provide a narrative of their experiences from when they first became aware of their symptoms. Follow up questions (where initial narratives did not touch on these topics) were asked about experiences of diagnosis, symptoms, treatment, interactions with health professionals, what ‘mental illness’ meant for people in relation to their overall lives, sense of self, and relationships with others, and in particular how people experienced decision-making – in relation to medical treatment as well as other life decisions. Family carers were given a similar opportunity to reflect on their experiences caring for their family member, the impact that caring had on their lives, relationships and self-identities, and their experiences of and views about supported decision-making. People with lived experience of ‘mental illness’ and family carers were purposefully sampled from diverse socio-economic and cultural backgrounds, location (metro and regional), age, gender, psychiatric diagnosis, and experience of involuntary treatment . Finally, psychiatrists and mental health practitioners with a broad range of specialist expertise were also interviewed.
Interviews were video and / or audio recorded with participants’ consent and transcribed verbatim. For the purposes of producing the online resource, interview data from people diagnosed with ‘mental illness’ and family carers was coded and synthesized, and transcripts were thematically reviewed using the constant comparison method. Based on this analysis, thematic summaries were written for the online resource, illustrated by short video, audio and text clips from interviews. These summaries were supplemented by 500 word summaries of people’s stories as well as a comprehensive list of other resources and links. For academic publications such as journal articles, book chapters and conference papers, other analytical approaches, including narrative and phenomenology, are being applied to the interview data (from all four participant groups).
Renata Kokanovic, Lead Investigator, Professor of Sociology of Health and Illness, School of Global, Urban and Social Studies, Centre for Applied Social Research, RMIT University; Adjunct Professor, School of Social Sciences, Arts, Monash University
Professor Bernadette McSherry, Co-Investigator, Foundation Director of the Melbourne Social Equity Institute at the University of Melbourne and an Adjunct Professor in the Melbourne Law School and the Faculty of Law, Monash University.
Helen Herrman, Co-Investigator, Professor of Psychiatry and Director of Research at Orygen Youth Health Research Centre and the Centre for Youth Mental Health, The University of Melbourne; Director of the WHO Collaborating Centre for Mental Health in Melbourne; President-Elect of the World Psychiatric Association.
Associate Professor Lisa Brophy, Co-Investigator, Centre for Mental Health, School of Population and Global Health, University of Melbourne.
Industry partners and organisations
This project is funded by the Australian Research Council (Linkage Project LP130100557) in partnership with: