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Review of Australian initiatives to reduce stigma towards people with complex mental illness: what exists and what works?

Abstract

Background

Australian national mental health policy outlines the need for a nationally coordinated strategy to address stigma and discrimination, particularly towards people with complex mental illness that is poorly understood in the community. To inform implementation of this policy, this review aimed to identify and examine the effectiveness of existing Australian programs or initiatives that aim to reduce stigma and discrimination.

Method

Programs were identified via a search of academic databases and grey literature, and an online survey of key stakeholder organisations. Eligible programs aimed to reduce stigma towards people with complex mental illness, defined as schizophrenia, psychosis, personality disorder, or bipolar disorder; or they focused on nonspecific ‘mental illness’ but were conducted in settings relevant to individuals with the above diagnoses, or they included the above diagnoses in program content. Key relevant data from programs identified from the literature search and survey were extracted and synthesized descriptively.

Results

We identified 61 programs or initiatives currently available in Australia. These included face-to-face programs (n = 29), online resources (n = 19), awareness campaigns (n = 8), and advocacy work (n = 5). The primary target audiences for these initiatives were professionals (health or emergency), people with mental illness, family or carers of people with mental illness, and members of the general population. Most commonly, programs tended to focus on stigma towards people with non-specific mental illness rather than on particular diagnostic labels. Evidence for effectiveness was generally lacking. Face-to-face programs were the most well-evaluated, but only two used a randomised controlled trial design.

Conclusions

This study identified areas of strength and weakness in current Australian practice for the reduction of stigma towards people with complex mental illness. Most programs have significant input from people with lived experience, and programs involving education and contact with a person with mental illness are a particular strength. Nevertheless, best-practice programs are not widely implemented, and we identified few programs targeting stigma for people with mental illness and their families, or for culturally and linguistically diverse communities, Aboriginal and Torres Strait Islander communities and LGBTIQ people. These can inform stakeholder consultations on effective options for a national stigma and discrimination reduction strategy.

Background

Stigmatising attitudes towards people with mental illness are prevalent in Australia [1]. While there have been some improvements in community understanding of common mental illnesses (particularly depression and anxiety), there is still widespread misunderstanding and ignorance [2, 3]. In particular, complex mental illnesses, such as schizophrenia, bipolar disorder and personality disorders, tend to be poorly understood and attitudes are much less positive. The low prevalence of these mental illnesses means that most people do not personally know someone with these illnesses, so they are more likely to rely on stereotypical attitudes. Common stereotypes about people with complex or severe mental illness include are that they are dangerous, unpredictable, lack competence to look after themselves, and have little chance of recovery [4]. Negative attitudes lead to discriminatory behaviour, primarily avoidance and exclusion, as people seek to avoid the risks of associating with people with mental illness. This can affect a person with mental illness’ opportunities for finding and keeping a job and their relationships with friends, family, and romantic partners [5]. This discrimination can increase feelings of worthlessness, hopelessness about the future, and suicidality [6, 7]. Reducing stigma and discrimination is therefore critical to improving the wellbeing of people with mental illness and their carers.

Reducing stigma towards people with complex mental illness is a key priority area of Australian national mental health policy. The Fifth National Mental Health and Suicide Prevention Plan (the Fifth Plan), released in 2017, focuses on stigma reduction as one of eight priorities for mental health reform [8]. It outlines the need for a nationally coordinated strategy to address stigma and discrimination and requires that the Australian government build on existing initiatives, including the evidence base of what works in relation to reducing stigma and discrimination. A recent meta-analysis of randomised controlled trials evaluated the evidence of interventions to reduce stigma towards people with severe mental illness (schizophrenia, psychosis or bipolar disorder) [9]. This found that both contact- and education-based interventions showed small-to-medium immediate reductions in stigma, but there was limited evidence on longer-term effects. There was also little guidance on what components of interventions are needed for effective stigma reduction. Furthermore, only two interventions had been evaluated in Australia, one of which was only available as part of a university experiment. While the review focused on high-quality randomised trial evidence from an international perspective, there is a need to understand what programs and initiatives are currently available in Australia specifically, and whether they have any evidence of effectiveness, even if not from randomised trials. This information is critical to inform options for a national stigma and discrimination reduction strategy as part of implementation of the Fifth Plan in Australia.

The aim of this study was therefore to (1) identify existing programs or initiatives run by Australian lived experience groups and other key non-government organisations that aim to reduce stigma and discrimination and promote positive behaviours towards people with complex mental illness; and (2) examine the evidence of effectiveness for these programs.

Method

In order to review existing Australian stigma and discrimination reduction initiatives and their evidence of effectiveness, we conducted literature searches and surveyed lived experience groups and key non-government organisations (NGOs).

Program inclusion/exclusion criteria

Programs were eligible if they (1) aimed to reduce stigma towards people with complex mental illness, defined as schizophrenia, psychosis, personality disorder, or bipolar disorder; (2) they focused on nonspecific ‘mental illness’ but were conducted in settings relevant to individuals with the above diagnoses (e.g., public mental health services, with mental health nurses); (3) they included the above diagnoses in program content; (4) stigma reduction was explicitly mentioned as a focus, or was implied (e.g. by including a stigma measure as an outcome or by focusing on improving understanding or knowledge of severe mental illness). All kinds of stigma were eligible, including personal or public stigma, perceived stigma, desire for social distance, discrimination, self/internalised stigma, and beliefs about recovery or prognosis.

Programs were ineligible if they (1) focused on common mental disorders (depression or anxiety), suicide, eating disorders, dementia, intellectual disability, PTSD, OCD, substance misuse or dual diagnoses; (2) aimed to improve mental health literacy or promote help-seeking without a specific focus on reducing stigma and discrimination; (3) were not conducted in Australia.

Literature search

A systematic search of the ‘grey’ and academic literature was conducted to identify Australian programs that aim to reduce stigma and discrimination.

Academic databases

For the academic databases we searched PubMed and PsycINFO, limited to studies published since 2009 to ensure that they were relevant to current practice. Literature search strategies were developed using medical subject headings (MeSH) and text words related to stigma and discrimination (see Additional file 1: Table S1). All study designs were eligible including quantitative (e.g. uncontrolled trials) and qualitative (e.g. participant interviews). A total of 652 studies were screened for eligibility.

These searches were supplemented by screening our results from a previous literature review [9] to identify any reports that did not meet the inclusion criteria for that review (e.g. due to lack of a control group) but met the inclusion criteria for this review.

‘Grey’ literature

The ‘grey’ literature search was conducted using Google Australia. The purpose of the ‘grey’ literature search was to identify eligible programs and to identify organisations with potential programs to be invited to participate in the survey.

Separate searches were conducted using the following key search terms: bipolar, personality disorder, (schizophrenia OR psychosis), (mental illness OR mental health), (stigma OR discrimination), and Australia. For each search, the first 50 websites were retrieved, and duplicates were excluded. The remaining websites were reviewed for relevant information and any links from these websites were followed when they were thought to contain useful information.

We also systematically searched websites of lived experience advocacy and support groups and other key NGOs to identify programs and evaluation reports. Overall, a total of 267 websites were searched for eligible programs.

Survey of lived experience groups and key NGOs

We conducted an online survey of lived experience advocacy and support groups and key NGOs, inviting them to provide details of their programs and associated evaluation or evidence of effectiveness.

Survey participants

Survey participants comprised key informants in Australian organisations of any type that have programs that aim to reduce stigma and discrimination and promote positive behaviours. These were reached in 4 key ways: (1) An email sent to organisations identified in web searches (see above); (2) Information about the study with a link to the survey included in the following organisations’ newsletters: Mental Health Australia, Mental Health Victoria, and Mental Health Coordinating Council; (3) An email sent to all voting and non-voting members of Mental Health Australia. Mental Health Australia is the peak, national non-government organisation representing the interests of the Australian mental health sector. Its members include national organisations representing consumers, carers, special needs groups, clinical service providers, public and private mental health service providers, researchers and state/territory community mental health peak bodies; (4) Snowball sampling—survey respondents were encouraged to pass on details of the project to other organisations with programs that met the inclusion criteria. In total we invited 177 organisations to participate in the survey.

Survey content

Survey data were collected online using Qualtrics software with both multiple choice and open-ended questions. The survey included information such as location, target audience, type of program, program delivery mechanisms, program reach and source of funding. Organisations were able to provide information about multiple stigma-reduction programs, if relevant. Organisations were asked to provide any available evaluation or evidence of effectiveness. Participants provided informed consent before completing the survey. The survey opened 9th of December, 2019 and closed on 31st of January, 2020.

A concerted effort was made to obtain missing information about programs from those identified in our searches and from completed surveys. Authors of academic papers were emailed to enquire about whether programs were still operating and to obtain information not reported in the scientific literature. Organisations were also sent reminder emails to undertake or finish completing the survey before it was closed.

Data analysis

Key relevant data from programs identified from the literature search and survey were extracted and synthesized descriptively and thematically. Level of evidence for each program was classified on a scale from 1–5, with 1 = no evaluation evidence, 2 = post survey feedback or qualitative interviews, 3 = one or more uncontrolled trials or repeated cross-sectional surveys, 4 = one or more controlled trials, 5 = one or more randomised controlled trials.

Results

Results from our survey of organisations in the mental health sector, grey literature search, and search of academic literature, identified 79 Australian programs or initiatives. These 79 programs were described or evaluated in 108 resources (as some programs were included in multiple academic papers). However, some of the identified programs did not appear to be currently available, based on information from program authors or a web search for further information. Programs that were one-offs conducted in the past, had ceased operating, or were experimental research studies not designed to be ongoing, are included in supplementary material (Tables 2 and 3). Excluding these programs left 61 programs currently operating in Australia. See Fig. 1 for a flow chart of the process of identifying eligible programs. These were further broken down into face-to-face programs (n = 29), community awareness campaigns (n = 8), programs or organisations undertaking advocacy for the rights of people with mental illness (advocacy programs, n = 5), and publicly-available online resources (n = 19).

Fig. 1
figure1

Flow chart for identifying eligible programs

Face-to-face programs

Face-to-face programs were primarily targeted to four types of audiences: (1) Health professionals and health professional students; (2) People with a mental illness; (3) Family of people with a mental illness; (4) Members of the general population (particularly at school, university, or workplaces). See Tables 1, 2, 3 and 4 for characteristics of each included program.

Table 1 Programs targeted to health professionals, health professional students, emergency workers
Table 2 Programs targeted to people with mental illness
Table 3 Programs targeted to family of people with mental illness
Table 4 Programs targeted to the general population

About half (55%) of the face-to-face programs focused on stigma towards people with a non-specific mental illness, six (21%) targeted a range of disorders including psychosis, schizophrenia, bipolar disorder or personality disorders, three (10%) specifically focused on psychosis or schizophrenia, two (7%) on ‘severe’ mental illness, and two (7%) specifically on Borderline Personality Disorder.

Three-quarters (76%) of organisations providing anti-stigma programs were classified as not-for-profit or community sector, and the remainder were government (10%), university/tertiary education (10%), or private/for-profit (3%). A majority of organisations (66%) provided a range of services, including some anti-stigma programs, rather than only running anti-stigma programs (34%), and a majority reported running multiple anti-stigma programs (62%). A minority of programs were run in all Australian states and territories (24%), with the largest number run in NSW (31%), followed by Victoria (28%), the ACT (17%), Queensland (14%), South Australia (10%), Tasmania (10%), Northern Territory (10%) and Western Australia (3%)). Programs were also delivered across metropolitan (72%), regional and/or rural areas (62%) and remote communities (31%) with half delivered across multiple geographic areas.

Programs were delivered in a variety of settings, most commonly community settings (e.g. sports or arts organisations, 45%), followed by community health centres (41%). Also common were workplaces (38%), university or tertiary education settings (34%), primary healthcare (17%), and high school (14%). Only 2 were run in primary schools (7%). Programs tended to target adults (59%) or ‘all ages’ (14%). Adolescents were the target age group in four programs (14%) and young adults in two (7%). In addition, one program targeted children 8–18 years old (3%).

Most programs involved people with lived experience in their design (59%) or delivery (76%). Programs often included multiple types of components, but the most common was an education component (66%) followed by face to face contact (62%) or online/video contact (24%). Protest or advocacy was reported in 24% of programs. Only one program included an (optional) hallucination simulation component (3%).

Seven programs did not report a funding mechanism. Of the remainder, there was a variety of funding sources. Funding was sourced most frequently from the Commonwealth government (25% of reported) or from earned income (22%), followed by state government (19%), donations or volunteers (11%), philanthropic (8%), corporate sponsorship (6%), and other means (8%).

Most of the programs were well-established, with half running for more than 10 years (48%), 28% running for 5–10 years, one was 2–5 years old (3%), and one was 6–12 months old (3%). This information was not reported or available for nearly a fifth of programs, however. Information about program reach was not available for seven programs. Of the remainder, ten (45%) had reached up to 1000 people, five (23%) 1000–10,000, four (18%) reached 10,000–100,000, and three programs (14%) had reached over 100,000 people.

The level of evidence for most programs was low. Seven programs (24%) reported no evaluation evidence and a further eight (28%) were evaluated with post program surveys or qualitative interviews only. These surveys tended to focus on satisfaction outcomes rather than impact on stigma. Only two programs (7%) were evaluated with one or more randomised controlled trials, the highest level of evidence. Six programs (21%) had one or more controlled trials, four (14%) were evaluated with one or more uncontrolled trials or repeated cross-sectional surveys, and for two programs the type of evaluation was unclear. Information about program evaluations is available in Table 5.

Table 5 Evaluation data from face-to-face programs

Programs targeted the following audiences:

Health professionals, health professional students, emergency workers

Our search identified seven programs that target health professionals, health professional students, or emergency workers. These varied in their approach but often included a focus on the potential for recovery, to counterbalance health professionals’ frequent contact with people when they are most unwell. Two programs target nursing students with contact interventions. One of these, Recovery Camp, is a nursing placement designed to facilitate contact between nursing students and people with lived experience outside an acute setting, where recovery is a focus. The program has run since 2013 and is funded by universities who pay for the placement by students. Two controlled trials found reduced anxiety about mental illness, negative stereotyping, and desire for social distance after the placement compared with traditional nursing placements. A second program, Recovery for Mental Health Nursing Practice, is taught by an academic with lived experience and also focuses on recovery concepts. Two controlled trials found improvements in some attitudes compared to a traditional mental health nursing subject. Pharmacy students are targeted by the Remind Training and Education program, which involves trained mental health consumers participating in pharmacy tutorials as educators. This program has run since 2010 and has reached 2,500 students at the University of Sydney. Evaluations in a controlled trial and an uncontrolled trial found reductions in stigma after the program and up to 12 months later. Of note, we identified one other program targeted to health students in a research study, but it is no longer running. This was a contact intervention for final year medical students to reduce stigma against people with schizophrenia as part of 6 week psychiatry rotation (see Additional file 1: Table S3).

Two programs target health professionals with education interventions. The Collaborative Recovery Training Program trains professionals in recovery concepts and is offered by the University of Wollongong. An uncontrolled trial found improved attitudes to consumers’ recovery possibilities after the training. The Managing Mental Health Emergencies short course trains rural and remote generalists how to respectfully and effectively manage mental health emergency care. An evaluation found better skills identifying psychosis and improved attitudes towards mental health clients. A third program, no longer running, focused on improving employment outcomes for consumers by funding Vocation, Education, Training and Employment Coordinators within mental health services (see Additional file 1: Table S2). An evaluation found an improvement in clinicians’ attitudes towards consumer capability of full-time, open employment.

Finally, Mental Health Intervention Team training is delivered to police officers and emergency service communication officers. The training is offered across an intensive 4-day program or 1-day training course. It teaches how to respond effectively during mental health emergencies with education and contact components. It has operated for more than 10 years in the NSW Police Force and Queensland Police Service. While an evaluation of a brief 2-h version for communications officers found no impact on stigma, a second controlled trial evaluating the full training package showed positive effects. Police officers reported increased confidence and understanding of how to deal with jobs involving individuals with a mental health problem or a drug induced psychosis.

People with mental illness

Eight programs target people with a mental illness (see Table 2). Most of these focus on reducing self-stigma, but some programs additionally aim to reduce public stigma through consumer participation in the community (i.e. contact). For example, The Station and TasRec both offer recreation programs where consumers engage with community members in a variety of activities. The Station aims to increase social connections and skills for living in people with a mental illness. It has operated since 1998 in South Australia and receives funding from a variety of sources. Interviews with participants found it increased feelings of empowerment and led to a greater belief in oneself. Similarly, TasRec provides recreation activities to help build skills, increase confidence, and reduce isolation. It has operated for more than 5 years in Tasmania by the Richmond Fellowship Tasmania and receives Commonwealth government funding. The Richmond Fellowship Tasmania also runs another program—Residential Accommodation, for people with mental illness. The service provides support to tackle stigma, access services, build social networks, and reach greater independence.

Two programs provide the opportunity for people with a mental illness to meet and support each other. The Hearing Voices group is a monthly/fortnightly peer support group for people with schizophrenia, who share stories and coping strategies on living with voices. It is offered in Victoria by Uniting Prahran. The BPD Community Information Nights are a forum for sharing information and support for people with Borderline Personality Disorder. They aim to address stigma and discrimination by focusing on hope and optimism about recovery. They are held three times a year in Victoria, supported by volunteers.

My Recovery is a peer-led education program for people living with mental illness offered in Darwin by Northern Territory Mental Health Coalition. The program aims to support recovery and provide a vocational pathway to people with lived experience. It is facilitated by peers and consists of nine weekly sessions that cover education topics such as stigma and discrimination, advocacy, recovery and skills training in communication, personalised recovery planning and goal setting.

A different sort of contact intervention is offered by Compeer (The Friendship Program). Community volunteers and people with a mental illness are matched and meet regularly to develop friendships. The ACT branch of this international program has operated since 2009 with 253 participants. An evaluation found lower levels of stigma in volunteers with stronger relationships with their matches and that stigma was not related to the length of the relationship/contact.

Finally, Being Herd by batyr is a workshop for young people with mental illness who are trained how to share their stories to reduce stigma. This 2-day workshop has trained more than 700 people but has not been evaluated for its impact on stigma.

Families of people with mental illness

Three programs target families of people with mental illness (see Table 3). These include psychoeducation elements to increase understanding of mental illness and how to cope, and as such, may reduce self-stigma and stigma towards their family member, even though this may not be an explicit aim. The BPD Community Family and Friends Group provides support and psychoeducation. The group meets monthly and has operated in Victoria since 2015 on a volunteer basis. The Journey to Recovery is offered by St Vincent’s Mental Health Service in Victoria and has run since 2009. It is a group psychoeducation program for families and friends of people experiencing early psychosis to assist coping and reduce isolation. An outpatient version runs for 5 × 2-h sessions and an inpatient version is a single session. Two uncontrolled trials found improved knowledge of psychosis and recovery and reduced feelings of isolation in participants. A third program, Kookaburra Kids Camps and Activity Days, targets children of people with a mental illness. The program offers therapeutic recreation camps and activities in most states of Australia. Operating for more than 10 years, it has reached more than 3,000 people. Funding is from government, donations and corporate sponsorships.

Members of the general population

The most frequent target of anti-stigma programs was the general population, as we identified 11 programs of this type (see Table 4). Eight of these were training programs delivered in organisations such as schools, universities or workplaces. All programs focus on non-specific mental illness or mental illness including schizophrenia, psychosis, personality disorder, or bipolar disorder, rather than these disorders specifically. These programs are typically quite short, such as around 60 min in length. The exception is Mental Health First Aid training, which is at least 12 h in length. Six programs include both contact and education elements, one includes only contact and one includes only education.

Three programs have been established for more than ten years and have had a wide reach: Mental Health 101, Mental Health First Aid training, and SANE Australia’s Peer Ambassador Program. Mental Illness Education ACT (MIEACT) has run Mental Health 101 courses for youth and adults in the ACT since 1993 with 8,000 people trained each year. These are 60-min workshops delivering contact and education to schools or workplaces. Consumer educators are guided by the DoNOHarm safe story-telling framework. A controlled trial of Mental Health 101 Youth found increased knowledge about mental illness and reduced stigma after the training. Interviews with the consumer educators showed that participating in the program had an effect on self-stigma but there was also a fear of being stigmatised as a result of presenting.

Mental Health First Aid (MHFA) training was established in 2000 and has trained 800,000 people across Australia. Training focuses on how to support a person developing a mental health problem or crisis and includes contact, education, and (optionally) a hallucination simulation activity. Training is delivered by accredited instructors who choose where to offer the course, such as workplaces, universities, and other organisations. To maintain program fidelity, accredited instructors are required to regularly deliver MHFA courses and undertake continuing professional development. MHFA has been rigorously evaluated in Australia and internationally since its inception with 3 meta-analyses, 16 RCTs, 7 controlled trials, and a number of uncontrolled trials. Meta-analyses show the program leads to a reduction in stigmatising attitudes after training and up to six months later [10]. Of note, the course has been evaluated in several culturally and linguistic diverse populations in Australia, including Vietnamese, Chinese, ‘multicultural’ communities, and Chinese international students, with positive effects on stigma. It has also been evaluated with health professional students, including nursing students and pharmacy students.

SANE Australia’s Peer Ambassador Program also involves presentations in workplaces and community settings across Australia by people with lived experience. Ambassadors receive training and support to share their personal experiences and also contribute to advocacy projects. This is a long-running program which currently supports 110 Peer Ambassadors, with more than 1000 trained since 1986. However, the program has not been evaluated for its impact on stigma.

Although only operating for 5–10 years, batyr has had already had a significant reach. Batyr run three programs—for schools (batyr@school), universities (batyr@uni) and workplaces (batyr@work). Sessions last 60–90 min and include contact from two people with lived experience as well as education about mental illness. Lived experience speakers are trained in the Being Herd workshop described above. Batyr programs have been delivered to more than 220,000 people and the batyr@school program has been evaluated with an RCT. This evaluation has not been published in the peer-reviewed literature but the authors report that the program reduced stigma towards mental health issues and this lasted for at least 3 months after the program.

Other similar awareness training programs delivered in organisations around Australia include SPEAK UP! Stay ChaTY, LIVINGWell, Mental Health Awareness by Mental Health Partners, and Staff Wellbeing Workshop by Chess Connect (delivered to workplaces in NSW only). SPEAK UP! Stay ChaTY has been evaluated and found participants reported being more comfortable in talking about mental health after the training. The other programs provided no information about evaluations.

Australian Rotary Health and Rotary Clubs hold Mental Health Awareness Forums in communities around Australia. These usually involve a consumer, a carer, and a mental health professional as speakers on mental health. Since 2000, about 5,000 people have participated in these forums. The program was evaluated with post feedback surveys and found improvements in perceptions of knowledge and what can be done to reduce stigma.

The Dax Centre in Victoria offers two complementary anti-stigma initiatives that are different to the programs described above—the Exhibition Program and the Education Program (Mindfields). These are based around the exhibition of art by people with mental illness. The Exhibition Program educates the general public via the biographies of the artists. It has operated for more than 10 years and has received more than 24,000 visitors. Feedback forms from visitors show that most agree the exhibitions increase sympathy, understanding of mental illness, and appreciation of the creative ability of people with mental illness. The Education program is delivered to secondary and tertiary students and is a structured program including a tour of the exhibition, education and contact with people with lived experience. Another one-off program has also used art by people with lived experience to reduce self-stigma and stigma in the community (see Additional file 1: Table S3). Art created by young people attending Headspace in regional NSW was exhibited in commercial retail outlets and local community centres. Interviews with retail staff involved in the exhibition reported that the program had brought mental illness out into the open and increased empathic understanding of others’ emotional experiences.

Also of note is a one-off program that was run in Sydney’s Macedonian community to reduce stigma towards people with schizophrenia (see Additional file 1: Table S2). Fear and Shame was a theatre play about a Macedonian family with a son with schizophrenia. This was a culturally appropriate approach that reached about 1,600 people in the community over six months of staging. An uncontrolled trial of its impact found improved attitudes towards mental illness and a greater willingness to disclose and seek help from health services.

Online resources accessible to the public

The search identified 19 online resources with a focus on reducing stigma towards mental illness that were designed and delivered by Australian organisations (see Table 6). These organisations provided a range of services and were not exclusively focused on running anti-stigma programs. Most organisations were not-for-profit or community sector (73%), with the remainder government (13%) and private (7%). Online resources were publicly and freely available by organisations via their websites or their content was uploaded to popular online streaming services such as Apple, Facebook and YouTube.

Table 6 Online resources accessible to the public

Most online resources focused on reducing stigma towards non-specific mental illness (26%) and psychosis or schizophrenia (26%), with the remainder focused on ‘complex’ mental illness (16%), bipolar disorder (16%) and personality disorders, primarily borderline personality disorder (16%). The majority of online resources (63%) took a whole of population approach and used text, audio and video content to reduce self-stigma and public stigma. A minority of online resources identified additional targets to the general public; notably, ‘Let’s Talk’, a podcast series that also targets rural and remote populations and the #WeSpeakUp campaign, which features a diverse cross-section of people with lived experience, including members of the Aboriginal, LGBTIQ, and CALD communities. The remainder of online resources targeted specific groups such as health professionals (16%) and people with lived experiences (21%). The search identified three online resources for health professionals. These were primarily education based and focused on upskilling clinicians through online training modules and webinars.

Most online resources (84%) were contact-based or involved an element of contact, such as via online videos. Contact involved people with lived experience sharing their insight and stories, except for two that involved people with lived experience as experts in online training for health professionals (e.g., BPD Webinar, Consumer and Carers as Educators), and one that involved peer-to-peer support (e.g., SANE Forums). The remaining online resources were education-based or included an educational component.

People with lived experience were usually involved in delivering the content of online resources (89%). Most online resources did not report whether people with lived experience were involved in the design of the resources.

Online resources with notable reach were SANE Forums and specific episodes from television programs produced by national broadcasters—The Feed (SBS) and You Can’t Ask That (ABC). SANE Forums are an online peer-support community used by people living with mental illness and by family and other carers from around Australia. The forums provide a safe, supportive and stigma-free environment for users to build stronger connections with others affected by complex mental illnesses. Seventy-five partner organisations syndicate the Forums on their own websites. In the past 12 months the SANE forums were accessed by 35,000 Australians and gained 4,400 new members. Two episodes of The Feed feature interviews of people sharing their experiences of psychosis, treatment and recovery. These episodes have amassed more than one million views on Facebook. One episode of You Can’t Ask That features eight Australians providing insight into living with schizophrenia and addressing misconceptions of the public. This episode has amassed 65,750 views on Facebook.

The level of evidence for most online resources was low. No evaluation evidence was reported for the majority (79%). Of the remaining, evaluations were in the form of usage data, post-feedback surveys, or qualitative interviews only, and did not report on effects on stigma. Notably, an evaluation conducted on users of SANE Forums identified its value as a supportive online environment free of stigma, where people felt understood by others who had shared similar experiences.

Awareness campaigns

We identified eight community campaigns in Australia with a focus on reducing stigma towards mental illness (see Table 7). These are mainly campaigns held annually that last for one day, one week, or one month. Apart from BPD Awareness Week and Schizophrenia Awareness Week, all campaigns focus on non-specific mental illness. All but two are conducted Australia-wide. Three campaigns have existed for more than ten years, two for 5–10 years, two for 2–5 years, and one was unclear. Six campaigns comprise multiple events, activities, promotional material and online/social media activity. There is a strong lived experience involvement in these campaigns, across their design, organisation, and delivery. Many of the events held as part of these campaigns include some form of contact between the public and people with a mental illness, whether that is via face-to-face stories or online video stories. Where reported, these campaigns have a wide reach from tens of thousands to hundreds of thousands each year. Only one campaign, World Mental Health Day, provided information from an evaluation. This was a feedback survey assessing satisfaction with campaign materials and willingness to participate in future, rather than assessing impact on stigma.

Table 7 Awareness campaigns

Two campaigns take a different approach to those above—Grow’s Odd Socks Day and batyr’s One Sock One Goal. Both involve wearing socks as a way of raising awareness about mental illness and showing support. Odd Socks Day occurs annually on the Friday before World Mental Health Day and One Sock One Goal is ongoing.

Although no longer running, the Napranum Social and Emotional Wellbeing Week was a week-long campaign run in the Cape York community of Napranum (see Table 2 in supplementary material). This was led by a local steering committee with support from Townsville mental health services. The week comprised a variety of activities to reduce the stigma of mental illness, including MHFA courses, live radio shows and concerts, community breakfasts, and consultations with school and community organisations. Campaign feedback was positive and that perceptions of mental illness as frightening had reduced.

Advocacy programs

Five programs were classified as advocacy initiatives (see Table 8). All programs focus on non-specific mental illness or mental illness including schizophrenia, psychosis, personality disorder, or bipolar disorder. Being’s Mental Health and Wellbeing Consumer Advisory Group, and Lived Experience Australia, both broadly advocate for improved acceptance of people with mental illness through activities such as participation in committees and media releases. Two programs advocated for change in specific areas—insurance coverage (Beyond Blue’s Insurance Discrimination Project), and media reporting (SANE’s StigmaWatch). The Stop Mental Illness Stigma Charter advocates for organisations to reduce stigma by committing to 7 principles. To date, 72 organisations have signed and committed to the charter. This program has existed for 2–5 years and a feedback survey from participating organisations showed 84% said adopting the Charter had made a difference in their organisation.

Table 8 Advocacy programs

Discussion

This review aimed to identify and examine the effectiveness of existing Australian programs or initiatives that aim to reduce stigma and discrimination towards people with complex mental illness that is poorly understood in the community. The broader aim was to inform options for a national stigma and discrimination reduction strategy as part of implementation of the Fifth National Mental Health and Suicide Prevention Plan in Australia.

Our review found 61 programs or initiatives currently available in Australia that had a focus on reducing stigma. These took a variety of stigma-reduction approaches across face-to-face programs, online resources, awareness campaigns, and advocacy work. The primary target audience for these initiatives were professionals (health or emergency), people with mental illness, family or carers of people with mental illness, and members of the general population. Most commonly, particularly for programs with a general public audience, programs tended to focus on stigma towards people with non-specific mental illness rather than on particular diagnostic labels. For some programs there may only have been a small component on poorly understood mental illnesses (i.e. schizophrenia, psychosis, personality disorder, bipolar disorder) and it is unclear whether anti-stigma messaging is diluted for these illnesses.

Evidence for whether programs are effective in reducing stigma is generally lacking. Only half of the face-to-face programs had been evaluated to test whether they had an impact on stigma, with only two programs evaluated with a ‘gold standard’ randomised controlled trial design. Nevertheless, most evaluations suggested positive effects on stigmatising attitudes. We did not find strong evidence of effectiveness for the other types of programs or online resources, noting that some of these are difficult to evaluate effectively.

There was little overlap of the programs identified in this review with those found in a meta-analysis of randomised controlled trials of international anti-stigma programs [9]. Only two programs were conducted in Australia, Mental Health First Aid training and a research-only program [11]. Although international programs have not been adopted into the Australian context, it is worth highlighting that most of the international studies did not evaluate ‘named’ programs that could be easily implemented elsewhere.

Strengths in Australian practice

The most well-developed area is Australian face-to-face programs involving education and contact with a person with mental illness. This reflects the findings of a meta-analysis of randomised trials which showed both education and contact interventions were effective in reducing stigma [9]. It would appear that both approaches are complementary, as education can correct myths and misunderstandings that underpin stereotypes, and lived experience stories about recovery have an emotional resonance that make the impact of mental illness more tangible. Additionally, consumers who share their story of lived experience often receive a benefit of reduced self-stigma related to increased confidence, sense of meaning and connection to similar consumer peers. Consumers who take on this role usually receive training and ongoing support, and this is fairly extensive in some programs (e.g. a 2-day workshop).

Another strength is that most programs or initiatives have significant input from people with lived experience. This input is into program design (e.g. through co-design or acting as project advisors) and program delivery, often covering facilitation or co-facilitation, not just in presenting lived experience stories.

There are several programs that are examples of best practice in Australia, due to being well-established or sustainable and showing reasonable evidence of effectiveness. For the general population these are Mental Illness Education ACT’s Mental Health 101 programs and Mental Health First Aid training. Other best-practice programs are Recovery Camp and the Remind Training and Education program for health professional students, and the Journey to Recovery program for family members of people with mental illness.

Weaknesses in Australian practice

Several weaknesses were identified in current Australian practice. It should be noted that these weaknesses should be considered in light of some potential review limitations. Despite every attempt to reach relevant Australian organisations with our survey, we may have missed some programs as the survey was only open in the busy December/January holiday season. Further caveats are described below where relevant. Notwithstanding these potential limitations, there were very few programs that targeted culturally and linguistically diverse communities, Aboriginal and Torres Strait Islander communities and LGBTIQ people. Two programs that were identified, a culturally-appropriate theatre show for the Macedonian community, and a Social and Emotional Wellbeing campaign for the community of Napranum, were one-off programs that did not appear to be currently available.

Programs for people with mental illness and their carers or family members are not widespread and are generally only available in certain locations, such as particular mental health services or recreation programs provided by not-for-profits. However, it is possible that we did not identify some relevant psychoeducation programs for carers if they did not allude to reducing stigma as a focus. Nevertheless, we could not identify any programs that explicitly focus on reducing self-stigma, such as via psychoeducation, cognitive restructuring or disclosure approaches (e.g. Honest Open Proud 12). Broadening the search to programs that focused on empowerment may have identified further relevant programs for people with mental illness.

While there are some examples of best-practice stigma reduction for health professional students (particularly nursing and pharmacy students), these are not widespread in all Australian education programs. There are also few programs focusing on stigma for health professionals once they are practicing, with the caveat that there may be some continuing professional development resources on stigma that we could not access. The one initiative for mental health professionals that showed improvements in attitudes related to people with mental illness’s capacity to work was not systematically implemented after being defunded.

Finally, we only identified one available program for primary school students, which was a program for children of parents with a mental illness.

Policy implementation recommendations

This review has highlighted the need for extensive consultations with key stakeholder groups to inform options for a national approach to stigma reduction in Australia. In particular, these consultations could address several questions that were unable to be answered in this review and provide guidance on implementation issues. Our review found programs offered to the general population tend to focus on non-specific ‘mental illness’, rather than complex mental illnesses that are poorly understood in the community. Given stigma varies by mental health problem, there is some debate about the merits of taking a generalist ‘mental illness’ approach, versus one that focuses more on specific mental illnesses and the particular issues associated with them [3]. Internationally, England’s Time to Change anti-stigma program uses non-specific mental illness in its approach and has shown positive effects upon stigma. Yet the authors of an evaluation of the program acknowledge that this may be because the public’s concept of mental illness has widened to include milder issues such as stress and grief, which are less stigmatised [13]. Consultations with Australian program providers and people with lived experience could explore views on whether existing programs targeted to mental illness should have a greater focus on complex mental illness, whether specific programs should be developed to do this, or whether existing programs should be implemented more widely.

Our review found that effective anti-stigma programs for nursing and pharmacy students exist but are not widespread, and we did not identify any effective programs for medical students. Consultations with health professional peak bodies and education providers could explore the options for development of new programs or sustainable expansion of existing programs that have evidence of effectiveness. Similarly, consultations with health care providers and people with lived experience could consider how to more widely implement into mental health services effective group psychoeducation for carers of people with early psychosis.

Overall, our review identified very few programs that target culturally and linguistically diverse or Indigenous communities. Consultations with these key stakeholder groups could identify communities in which anti-stigma initiatives are a priority, as well as how to support these communities in designing the most culturally appropriate sustainable interventions. There is also a need to expand the reach of programs that focus on reducing self-stigma in people with mental illness, and to identify which policy and funding mechanisms are required to do so.

Conclusions

This study identified areas of strength and weakness in current Australian practice for the reduction of stigma towards people with complex mental illness that is poorly understood in the community. Most programs have significant input from people with lived experience, and programs involving education and contact with a person with mental illness are a particular strength. Nevertheless, best-practice programs are not widely implemented, and we identified few programs targeting stigma for people with mental illness and their families, or for culturally and linguistically diverse communities, Aboriginal and Torres Strait Islander communities and LGBTIQ people. These findings can inform implementation of Australian National mental health policy, with the aim of reducing stigma and discrimination and ultimately supporting social inclusion and recovery.

Availability of data and materials

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

ACT:

Australian Capital Territory

BPD:

Borderline Personality Disorder

CALD:

Culturally and linguistically diverse

LE:

Lived Experience

LGBTIQ:

Lesbian, Gay, Bisexual, Trans and gender diverse, Intersex, Queer and questioning

MHFA:

Mental Health First Aid

MHIT:

Mental Health Intervention Team

MIEACT:

Mental Illness Education ACT

N/R:

Not Reported

NGO:

Non-government organisations

NSW:

New South Wales

OCD:

Obsessive Compulsive Disorder

PTSD:

Posttraumatic Stress Disorder

QLD:

Queensland

RCT:

Randomised controlled trial

SA:

South Australia

TAS:

Tasmania

VIC:

Victoria

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Acknowledgements

The authors would like to acknowledge Anthony Jorm for feedback on a draft of the report provided to the funders.

Funding

Funding for this research was received from the Commonwealth Department of Health, Australia. The views expressed in this publication are those of the authors and are not necessarily those of the funder.

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AM, JW and NR designed the study. AM and JW conducted the literature searches and data extraction. JW managed the survey data collection. AM drafted the manuscript and JW and NR read, edited and approved this submission. All authors read and approved the final manuscript.

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Correspondence to Amy J. Morgan.

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AM and NR collaborate with MHFA Australia on a number of projects, including development and evaluation of training. JW declares she has no competing interests.

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Morgan, A.J., Wright, J. & Reavley, N.J. Review of Australian initiatives to reduce stigma towards people with complex mental illness: what exists and what works?. Int J Ment Health Syst 15, 10 (2021). https://doi.org/10.1186/s13033-020-00423-1

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Keywords

  • Mental illness
  • Stigma
  • Discrimination
  • Schizophrenia
  • Bipolar disorder
  • Psychosis
  • Personality disorder