Overview

Welcome to the Mental Health and Supported Decision Making: Carers’ experiences website.

Caring for a family member experiencing severe mental health problems1 can be both challenging and rewarding. Here, you can find out about what it is like to care for loved ones experiencing severe mental health problems by seeing and hearing carers’ stories on film and audio-recording.

Our researchers travelled around Victoria to talk to 29 people2 from a range of backgrounds who care for family members who have received various psychiatric diagnoses including psychosis, schizophrenia, bipolar disorder, and depression. Many of their loved ones had received more than one diagnosis over the years.

Find out what people said about their experiences of caring for family members as they first became ‘unwell’, searching for information, encountering hospitals and mental health units, interacting with mental health practitioners and accessing carer support groups and workers. Hear about carers’ experiences of supporting the quality of life of the person being cared for, the impact of caring on their relationships with the person cared for and other family members, of social isolation, of caring for themselves, of personal growth and their views about how carers can better support practitioners – and be better supported by practitioners – to assist their loved ones to make decisions about their own treatment and other aspects of their lives.

These are just some of the many topics covered! We hope you find the information helpful and reassuring.

You can start by watching an introduction from Lisa, a family carer and Associate Professor Ruth Vine. There is also a preview of some of the interview video clips below. You can also go straight to the ‘Talking Points’ on the left, or explore ‘People’s Profiles’ to learn more about the people we spoke to.

PLEASE NOTE: This resource was developed under the guidance of and reviewed and approved by an Advisory Panel, including people with lived experiences of complex mental health concerns and their family supporters (carers). The published material includes the experiences of a wide cross-section of people with experience of caring for a family member with complex mental health concerns, and some of the content of their interview extracts may be distressing for some viewers.

If you feel distressed by any of the material on this website, please contact either your usual support person, Lifeline (13 11 14), or any of the services listed on our Resources & Information page. Please also see our disclaimer regarding language use on this site beneath the following videos.

 

Introduction by Lisa, a family carer

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Introduction by Associate Professor Ruth Vine

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Watch a preview of some of the interviews

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Funded by: Australian Research Council – Linkage Project 130100557 ‘Options for Supported Decision Making to Enhance the Recovery of People with Severe Mental Health Problems’

 

1 In designing and writing the content for this website, the authors acknowledge that there are many different opinions about the respectful use of language in the context of mental health experiences and systems. Some people are quite satisfied with the kinds of words and phrases commonly used within mental health settings, while others find this language inaccurate and offensive. Where people with lived experience have advised us that terminology is disputed, we have put those terms in quotation marks.

2 The term ‘carer’ was used in this website to designate a person who cares for a family member who has received a psychiatric diagnosis (including psychosis, schizophrenia, bipolar disorder, depression, schizoaffective disorder and borderline personality disorder). The authors acknowledge that there are varying opinions about preferred terminology in the context of experiences of informal mental health care. Indicative of the recent, widely accepted use in the Australian context of the term ‘carer’ over the last 20 years is the passing of Carers Recognition legislation by some states and territories including New South Wales, South Australia, Victoria, Western Australia and the Northern Territory.