About the survey
Our Turn to Speak is a national survey that seeks to understand the life experiences of people living with severe and complex mental health issues. We want to understand if and how a person’s experience of mental health issue impacts the way they are treated across different areas of their lives (“life domains”).
In order to advocate for better support and social outcomes for people affected by complex mental health issues, we are seeking a sample of 7,000 respondents who reflect Australia’s diverse population.
What is involved?
Our Turn to Speak will investigate the life experiences – both positive and negative – of people with severe and complex mental health issues. All responses will be kept confidential.
Following a short (approximately five minute) eligibility screening process, participants will be asked to complete a survey exploring if and how mental health issues impact the many and varied aspects of their lives. The survey will take approximately 30 minutes to complete.
Why is the survey important?
The findings from Our Turn to Speak will support SANE Australia and its partners to advocate for the needs of people living with severe and complex mental health issues.
SANE’s ultimate goal is to make a real difference in the lives of people affected by complex mental health issues through support, research and advocacy. The results will inform our advocacy priorities, and guide our policy positions and advocacy to support SANE’s mission.
Participants may be offered reimbursement for their time with a $25 electronic gift card. If you are eligible to receive this reimbursement, a gift card will be sent to you upon closure of the survey (first half 2020).
Only one gift card is available per participant. SANE reserves the right to withhold reimbursement if we believe an individual has taken the survey more than once.
Who can participate?
Our Turn to Speak is open to any adult (aged 18 and over) residing in Australia who has been living with at least one of the following severe and complex mental health issues over the last 12 months:
- Schizophrenia spectrum disorders (such as schizophrenia, schizoaffective disorder or schizophreniform disorder),
- Bipolar and related disorders,
- Personality disorders (such as but not limited to borderline personality disorder),
- Obsessive-compulsive and related disorders (such as OCD, body-dysmorphic disorder, excoriation disorder, trichotillomania or hoarding disorder),
- Post-traumatic stress disorder,
- Dissociative disorders,
- Eating disorders (such as anorexia nervosa, bulimia nervosa, avoidant/restrictive food intake disorder, and binge-eating disorder),
- Severe and treatment-resistant depression and anxiety requiring multi-agency support.
We are seeking responses from people who have received a formal diagnosis, as well as those who have not been diagnosed formally, but believe they may be experiencing one of these mental health issues.
To find out more, visit Information for participants.
My symptoms haven’t been particularly challenging in the last 12 months – am I still eligible?
You don’t need to be experiencing active symptoms to be impacted by your complex mental health issues in the community. We want to know if and how people treat you differently, even if you don’t need to manage active negative symptoms on a regular basis.
Can carers participate in Our Turn to Speak?
While carers’ perspectives are incredibly valuable, this particular survey seeks to understand the life experiences of those people themselves living with severe complex mental health issues. Carers can support the project by promoting the survey with the people they support and through their networks.
Through Our Turn to Speak we hope to develop a clearer understanding of where policy change and cultural shifts are needed most. Find out more about how the results will be used on our Advocacy page.
How long will the survey take?
Following a short (approximately five minute) eligibility screening process, the survey should take approximately another 30 minutes to complete online.
If you prefer, you can also complete the screening process and/or survey over the phone.
To find out more about the format of the survey, visit Information for participants.
Do I have to complete the whole survey?
You must complete the entire survey in a single session for your answers to be included in the Our Turn to Speak results.
The survey will take approximately 30 minutes and you may receive a $25 electronic gift card reimbursement for your time upon completion.
If you are eligible to receive this reimbursement, a gift card will be sent to you upon closure of the survey (first half 2020). Only one gift card is available per participant. SANE reserves the right to withhold reimbursement if we believe an individual has taken the survey more than once.
How will my privacy be protected?
Once you’ve completed the survey, any identifying data (for example, your email address) will be separated from your survey responses.
All the data we collect will be stored in a secure databank (in a password-protected, unidentifiable format) and is accessible to the project researchers named on this document only.
Can I change my mind about participating?
Your participation in Our Turn to Speak is voluntary and you can withdraw from the survey at any time.
How can I update my contact details?
Have people living with complex mental health issues been involved in the development of this project?
Yes. People with a lived experience of complex mental health issues have been instrumental in the development of all aspects of this project.
We know that answering questions about mental health issues can be confronting, and that talking about personal experiences of discrimination can be difficult. These are just some of the many reasons we have been guided by people with lived experience throughout the development of the Our Turn to Speak survey. One of our key aims is to make the experience of participating in this survey a positive one.
People with a lived experience of complex mental health issues have made valuable contributions to this project as members of our expert reference group and steering committee. For example, as members of our expert reference group, they have reviewed and considered the questions drafted for the Our Turn to Speak survey. The questions that appear in the survey were included once they had been endorsed by this committee.
In addition, people with lived experience have had significant influence over how our survey questions are worded, to ensure they are acceptable and safe. What’s more, the survey’s title – Our Turn to Speak – was created to represent the inclusive nature of this survey by the members of our steering committee who have lived experience of complex mental health issues.
People with lived experience have contributed to every single part of the Our Turn to Speak project, from the bottom to the top. That goes for the project’s leadership team too.
People personally affected by complex mental health issues are experts on their own life experiences. We are thankful to everyone who has made significant and ongoing contributions to shaping the Our Turn to Speak survey and the National Stigma Report Card.
If you didn’t find the answers you were looking for, get in touch via our Contact us page.