Participants required to better understand Australian's living with mental health issues
Stigma and discrimination in relationships a top concern for those living with complex mental health issues, new data shows
Experiencing stigmatising attitudes and discrimination from friends and family is the primary concern reported by the first wave of survey participants in a new national survey aiming to better understand the experience of Australians living with complex mental health issues.
Our Turn to Speak – a study led by SANE Australia’s Anne Deveson Research Centre, in partnership with the University of Melbourne’s School of Psychological Sciences – is investigating experiences of stigma and discrimination related to complex mental health issues across 14 life domains including employment, housing, healthcare services, and interpersonal relationships.
Interim data, collected from the survey’s first thousand respondents, shows that stigma and discrimination were most frequently experienced from family and friends (reported by 49% of participants identified this as one of the top three domains in which they experienced stigma and discrimination), followed by mass media (43%) and social media (42%).
When considering the impact of those experiences, participants felt most affected by stigma and discrimination experienced in relationships with friends and family (reported by 70% of participants as one of the top three domains in which they were most impacted by stigma and discrimination), followed by employment (57%) and healthcare services (26%).
Because of stigma about their mental illness, 84 per cent of respondents agreed that they had ‘stopped [themselves] from making or keeping friends, and 77 per cent agreed that they had ‘withdrawn from relationships with family.’
Deputy CEO of SANE Australia and Director of the Anne Deveson Research Centre, Dr Michelle Blanchard said these interim findings suggested interpersonal relationships should be targeted as a priority area for intervention in any comprehensive stigma-reduction initiative for Australians living with complex mental health issues.
“This is the first national Australian data that demonstrates this issue, and we’re interested to see whether interim findings are supported across the next wave of the survey,” Dr Blanchard said.
SANE is hoping to secure another 2000 survey completions by the end of the March and will use findings from Our Turn to Speak to advocate for policy changes and influence resources and programs at local, regional and national levels.
Dr Blanchard said a diverse range of people completing the survey was vital to ensure the experiences of women, men and the LGBTIQA+ community, and younger and older Australians are captured.
“We know there is a diverse cohort of around 690,000 Australians experiencing mental health issues that are greatly impacted by stigma and discrimination.
“We want to hear directly about their experiences so that we can identify where change is needed to ensure everyone lives a life free from stigma and discrimination,” she said.
Solicitor, embodiment coach and mental health advocate, Elly Danks who has lived experience of depression, generalised anxiety disorder and post-traumatic stress disorder said the survey provided an opportunity to be heard.
“Interpersonal stigma is the main area that I’ve experienced stigma when it comes to my mental health. When I was diagnosed with epilepsy, I found that the support I received was a lot more tangible and ongoing - a lift to appointments, regular check-ins, and a high level of empathy towards my experiences.
This was really different when it came to my mental health. If I was going through a rough patch with my depression, I would receive initial words of sympathy and support, but there would never be tangible support given, and the words would quickly dissipate, and I’d be left with no support.
I hope that by sharing my experiences we can start to change the culture surrounding mental illness.”
The confidential survey can be completed online or by phone in around 30 minutes.
Community members aged 18 and over, who have experienced complex mental health issues in the last 12 months, can complete the confidential survey at https://www.outurntospeak.com.au or over the phone by calling 1800 998 983 before 31 March 2020.
About the survey
Our Turn to Speak is the first of two large scale national surveys being conducted as part of SANE Australia's National Stigma Report Card project.
The project aims to gather Australian-first evidence on the experiences of stigma and discrimination for people living with complex mental health issues and to use this information to drive positive change across a range of domains including housing, education, employment and mental health services.
The Our Turn to Speak survey, conducted online, in person and via telephone, investigates experiences of stigma and discrimination across 14 life domains by directly engaging people who live with complex mental health issues.
Specifically, the survey seeks to recruit adults (18 years and above), residing in Australia, who have been living with one or more the following severe and complex mental health issues over in 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)
Trauma-related disorders (such as PTSD or C-PTSD) or 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.
Analysis of the first 1,000 survey responses was undertaken in early 2020, with key interim findings included in this media release.
Our Turn to Speak will continue to recruit participants until 31 March 2020. Further analysis of all of the responses received will then be conducted and a final report prepared.
Key interim findings – Our Turn to Speak
Experiences of stigma and discrimination in relationships with friends and family because of an individual’s experience of complex mental health issues was the primary concern reported.
The three domains with the highest reports of frequent stigma and discrimination were Relationships with Friends and Family (48.8%), Mass Media (43.1%) and Social Media (41.6%).
In terms of domains most affected by such experiences over the last 12 months, those most frequently chosen by participants were Relationships with Friends and Family (69.7%), Employment (56.5%), and Healthcare Services (26.4%).
A slightly higher proportion of males (19.5%) selected Employment as a life domain that had been most affected by stigma and discrimination because of complex mental health issues compared with the proportion of males who selected Relationships with Friends and Family (15.1%) and Mental Healthcare Services (11.5%) as one of their most affected domains.
In relation to anticipated stigma and discrimination in relationships:
83% of respondents agreed with the statement 'I expect that people will not want to be friends with me
79% of respondents agreed with the statement 'I expect that people will not want to date or have intimate relationships with me'
69% of respondents agreed with the statement 'I expect to be treated unfairly when making or keeping friends'
64% of respondents agreed with the statement 'I expect to be treated unfairly by my family'
Because of stigma about mental health issues:
90% of respondents agreed with the statement 'I have stopped myself from socialising as much as I would like to'
89% of respondents agreed with the statement 'I have withdrawn from my relationships with friends'
84% of respondents agreed with the statement 'I have stopped myself from making or keeping friends'
77% of respondents agreed with the statement 'I have withdrawn from my relationships with family'