Project dates:

2014 – 2018

Grants and funding:

Australian Research Council Linkage Project

Key People:

Renata Kokanović, Professor of Medical Sociology (RMIT University), Professor Bernadette McSherry (Melbourne Social Equity Institute, The University of Melbourne), Professor Helen Herrman (Orygen, The National Centre of Excellence in Youth Mental Health, The University of Melbourne), Associate Professor Lisa Brophy (Melbourne School of Population and Global Health, The University of Melbourne), Dr Kate Johnston-Ataata, Mr Nicholas Hill and Dr Jacinthe Flore (RMIT University)

Industry Partners:

Victorian Department of Health and Human Services, Mind Australia, Neami National, Wellways, Tandem Carers, Victorian Mental Illness Awareness Council

Background

This innovative, interdisciplinary research project investigates the experiences of people living with a range of psychiatric diagnoses, including bipolar disorder, psychosis and schizophrenia. The project addresses what mental health services do (support and therapeutic practice), and the broader social and cultural significance of diagnosis.

We are investigating not only people’s first hand experiences of living with a psychiatric diagnosis, but also the experiences of members of their social networks, psychiatrists and other mental health practitioners. A key purpose of the project is to develop mechanisms that make it easier for people living with a psychiatric diagnosis to actively participate in decision-making about clinical and other treatments and other service use.

Our team

This research project brings together a diverse, rich research team of academics with backgrounds in the sociology of health/mental health and illness, psychiatry, mental health law, cultural/gender studies, mental health services research, philosophy and bioethics as well as experts by experience and members of their social networks.

The Supported Decision-Making project was led by Renata Kokanović, Professor of Medical Sociology (RMIT University), in collaboration with Professor Bernadette McSherry (Melbourne Social Equity Institute, The University of Melbourne), Professor Helen Herrman (Orygen, The National Centre in Youth Mental Health), and Associate Professor Lisa Brophy (Melbourne School of Population and Global Health, The University of Melbourne). In addition, Dr Kate Johnston-Ataata, Mr Nicholas Hill and Dr Jacinthe Flore (early career researchers at RMIT) are contributing to data analysis and publications.

The project has been developed in consultation and in partnership with the Victorian Department of Health and Human Services, and five of the major NGOs supporting mental health service and delivery in Victoria: Mind Australia, Neami National, Wellways, Tandem Carers and Victorian Mental Illness Awareness Council, and with the active participation of mental health service users and family members supporting them.

Based on narrative interviews (personal stories provided in an interview format) with mental health service users, their family members and other support persons, including psychiatrists, the project team designed a unique online resource. The online resource synthesises participants’ experiences into topic summaries that address those areas of subject-matter the interviews demonstrate are most important. The team also developed additional, practically-focused initiatives, centred on the key purpose of facilitating active participation in decision-making about treatments and other issues.

Real-life personal stories offered insights into the layers of social, cultural, bio-medical and personal meanings that shape our experiences, assumptions, stigmas, practices and understandings of self and ‘other’. Bringing in our interdisciplinary team’s critical experiential, social, legal and philosophical perspectives to bear on clinical processes and practices was essential to interrogate concepts of ‘mental illness’ and ‘personal recovery’, as well as SDM, legal rights and personal agency.

By undertaking interdisciplinary qualitative research into the diverse experiences of people in the mental health system, we explored the phenomenology (what is the experience actually like?) and hermeneutics (how do we interpret the experience, and what does it mean?) of living with a psychiatric diagnosis.

To gain a broader understanding of the global climate, an international comparative analysis of supported decision-making laws, policies and programs was conducted. The findings allowed our team to assist in 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.

The production of two digital archives based on research participants’ stories of living with mental health diagnoses and family members’ experiences were created. The two online resources, Mental Health and Supported Decision Making: Lived Experience Perspectives and Supported Decision Making: Carers’ Experiences, can be found on Healthtalk Australia.

A comprehensive suite of resources was produced as a result of the project. These resources are aimed at improving supported decision-making practices, and to assist family members and other support persons’ participation in supported decision-making. They include:

• An introduction to the Supported Decision-Making project and suite of resources.
• The project’s Final Report, which includes a four page Executive Summary detailing the main findings.
• Guidelines for Supported Decision-Making in Mental Health Services.
• A suite of fact sheets, including:
  – What is Supported Decision-Making?
  – Supported Decision-Making: Legal Mechanisms
  – Practices to Improve Supported Decision-Making in Mental Health Services
  – Resources for Supported Decision-Making.