Supported Decision Making Project

Welcome to the Supported Decision Making (SDM) project: a project that aims to investigate and support the rights, agency and self-determination of people in the mental health system.

A key output of this project was the production of two internet resources based on research participants’ stories of living with severe mental health problems and carers’ experiences. Launched in June 2016, the resources can be found on the Healthtalk Australia website.

The two websites are:

Mental Health and Supported Decision Making: Lived Experience Perspectives

Mental Health and Supported Decision Making: Carers’ experiences

About the project
This is an innovative, interdisciplinary research project led by Associate Professor Renata Kokanovic. The project involves collaboration with researchers based at the University of Melbourne and Victorian Department of Health, representatives of major non-governmental organisations (NGOs) supporting people with lived experience of ‘mental illness’[1], and an international Advisory Board. It aims to help us better understand the experiences of people living with psychiatric diagnoses including bi-polar disorder, psychosis and schizophrenia (‘experts by experience’). The project addresses what mental health services do (support and therapeutic practice), and the broader social and cultural significance of diagnosis.

Our research team includes 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.

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.

Based on narrative interviews (personal stories provided in an interview format) with experts by experience, their family members and other support persons, the project team will design a unique online resource or ‘tool-kit’. The tool-kit will synthesise participants’ experiences into topic summaries that address those areas of subject-matter the interviews demonstrate are most important. The team will also develop additional, practically-focused initiatives, centred on the key purpose of facilitating active participation in decision-making about treatments and other issues.

The project has seven interrelated objectives:

  1. To better understand 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 diagnosis of schizophrenia, psychosis or bipolar disorder;
  2. To systematically document the experiences of members of support networks of people diagnosed with schizophrenia, psychosis or bipolar disorder, so as to identify how they could be better supported in providing care;
  3. To systematically document the experiences of psychiatrists and other mental health practitioners in their therapeutic alliances with experts by experience when determining treatments and other supports and services;
  4. To conduct an international comparative analysis of supported decision-making[2] laws, policies and programs;
  5. To explore how the results of these overlapping areas of research might be used to inform therapeutic support in the context of psychiatric diagnosis;
  6. Through analysis and synthesis of all datasets, to develop options for supported decision-making which can be implemented through clinical and other relevant services so as to provide better support for people using those services; and
  7. To enhance opportunities for self-determination and social participation for people using the mental health care system.

The project’s interdisciplinary approach has been developed in consultation and partnership with the Victorian Department of Health and five of the major NGOs supporting mental health service and delivery in Victoria: Neami Limited, Tandem (previously Victorian Mental Health Carers Network), Victorian Mental Illness Awareness Council, Mental Illness Fellowship Victoria and Mind Australia.

The project team also includes an international Advisory Panel.

The project is funded by the Australian Research Council Linkage projects scheme (LP130100557).

Further information about the project is available via the above right menu.

[1] The ‘Language used in this website’ page explains how the authors of this website approach the respectful use of language in the context of mental health experiences and systems.

[2] A definition of ‘supported decision-making’ is included here on the ‘Language used in this website’ page.