Do you have a question about the National Stigma Report Card or the Our Turn to Speak survey? Check to see if your question has been answered below. Terminology: what are ‘complex mental health issues’? We use the following definition to describe people experiencing ‘complex mental health issues’. People aged 18 and over who identify as having: a complex mental illness an experience of complex trauma or very high levels of psychological distress We acknowledge that people’s preferences about how they like their experiences to be described vary, and that not having these preferences respected can itself be stigmatising. We hope this project creates a space to explore these, and other issues, to support everyone to live a life free from stigma and discrimination. Research: Were people living with complex mental health issues involved in the project? Yes. People with lived experience of complex mental health issues guided 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. People with lived experience helped to create a survey that was holistic and gave participants the opportunity to share what was most important to them. People with lived experience made valuable contributions to this project as members of our Expert Reference Group, Steering Committee and as Lived Experience Champions. Lived experience is also represented in the project’s leadership team. We are grateful to everyone who has made significant and ongoing contributions to the National Stigma Report Card. Research: How is a participant’s privacy protected? Once someone completed the survey, any identifying data (for example, an email address) was separated from their survey responses. All the data is stored in a secure databank (in a password-protected, unidentifiable format) and is only accessible to the project researchers named in the report. Research: Were carers able to participate in the survey? While carers’ perspectives are incredibly valuable, this particular survey was designed to explore the life experiences of people living with severe and complex mental health issues. Research: Who participated in the survey? The survey was open to any adult (aged 18 and over) living in Australia who had experienced at least one of the following severe and complex mental health issues in the previous 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. Participation was open to people who had received a formal diagnosis (whether they agreed with that diagnosis or not), as well as those who had not been diagnosed formally but believed they may be experiencing one of these mental health issues. Research: How did the Our Turn to Speak survey work? The survey investigated the life experiences – both positive and negative – of people living with severe and complex mental health issues. There was a short initial eligibility screening process. Eligible participants were presented with questions that explored if and how their complex mental health issues affected certain aspects of their lives. The confidential survey took around 60 minutes to complete. Terminology: what are stigma and discrimination? There are many forms of stigma in society. Some are based on negative attitudes or beliefs; others are due to a lack of understanding or misinformation. In the context of the National Stigma Report Card, stigma describes negative and damaging stereotyped ideas and emotional responses relating to complex mental health issues. The key perceptions underpinning stigma are that someone is flawed, undesirable or threatening because of their experience of complex mental health issues. This is simply not true. Stigma can lead to a lack of support or empathy for people living with a mental health issue, leaving them embarrassed, misunderstood and marginalised. Stigma often comes from others, but it can also come from yourself if you have internalised the negative stereotypes. This is known as self-stigma. The effects of stigma can be as distressing as the mental health issue the person is facing, and can result in tangible negative outcomes such as symptoms being ignored, poor recovery and lower quality of life due to isolation. Discrimination occurs when stigma is expressed through negative actions or behaviour towards people living with complex mental health issues. Stigma and discrimination are often very real concerns for people living with complex mental health issues. A lot has been achieved in the last two decades in terms of de-stigmatising common mental health conditions such as mild-to-moderate depression and anxiety. However, SANE Australia’s work with people living with complex mental health issues shows there is still much more to be done for people with less common or well understood conditions. The task of ‘stigma reduction’ is by no means complete.
