Rethinking stigma reduction programs for people with severe mental illness

As Henderson et al1 outline in their comprehensive and thoughtful review, people with severe mental illness experience high rates of social exclusion. The authors make several recommendations for addressing this issue, one of which is to include severe mental illness explicitly in stigma reduction programmes. To assist with setting priority targets for social inclusion and stigma reduction, they also recommend consulting people with severe mental illness about their experiences of exclusion across all life areas. In Australia, in 2019-2020, we conducted a large-scale community consultation project, including interviews and focus groups with almost 250 people2. The project had the explicit aim of asking “people with mental illness, that is poorly understood in the community” what they thought should be central elements of a national stigma and discrimination reduction strategy. The above terminology is used in Australia’s Fifth National Mental Health and Suicide Prevention Plan, and arguably highlights a view that use of terms such as severe mental illness or specific diagnoses should be avoided. Nonetheless, in this project, we defined our scope as including psychosis, schizophrenia, bipolar disorder and borderline personality disorder, to ensure that the focus was on severe mental illness rather than on depression or anxiety. There was strong support for a national strategy to tackle stigma and discrimination towards people with mental illness, with many noting the need for a long-term approach and ongoing evaluation. The most common theme was ensuring that people with lived experience are central to any strategy, including in leadership, co-design, delivery and evaluation roles. Success will require that sufficient flexibility, financial support and mentoring accompany all lived experience roles. This is even more important for people from Indigenous or culturally and linguistically diverse backgrounds, who may face additional challenges. Participants also emphasized the importance of addressing both structural and interpersonal discrimination. Health services, workplaces and media were identified as key priority settings for targeted action. Support for anti-stigma initiatives that explicitly focus on severe mental illness comes from evidence that stigma is not a unidimensional construct, and that attitudes and experiences of discrimination vary according to diagnosis. We have made progress in addressing some aspects of stigma, but have been less successful in others. In high-income countries, we have reduced beliefs that depression and anxiety are due to personal weakness, that they do not need treatment, and that an experience of depression is not relatable3. We have been far less successful in shifting beliefs about people with psychosis or schizophrenia. Arguably, we have widened the stigma gap between people with mild to moderate anxiety and depression and those with severe mental illness3. Moreover, evidence from two Australian nationally representative surveys shows that, between 2011 and 2024, while beliefs about personal weakness and dangerousness for depression, psychosis and long-term schizophrenia have decreased, desire for social distance from a person with these conditions remains unchanged or has even increased4. These findings point to the need for novel approaches to reducing stigma against people with severe mental illness. Including severe mental illness explicitly in stigma reduction programs also requires us to productively resolve the tension between critiques of the biomedical paradigm in mental illness and the need to tailor anti-stigma programs for the specific diagnoses in which people with severe mental illness report the most discrimination. Those who reject the biomedical paradigm argue that diagnostic labels reinforce power imbalances between clinicians and patients, fail to account for cultural and contextual factors in mental illness, and contribute to social exclusion and coercive treatment practices2. While it is obviously possible in person-to-person interactions to respect individual choices about the use of diagnostic terms, this is less likely to be possible in programs or campaigns targeted to groups. Notable examples of stigma towards people with specific diagnoses include attitudes towards people with borderline personality disorder among health professionals5, or “diagnostic overshadowing” of physical health problems in people with long-term schizophrenia6. Tackling these issues in health services will require structural changes that involve collaboration between senior leaders and people with lived experience of severe mental illness, as well as ongoing training, including as part of continuing professional development. This may be particularly critical for early-career health professionals, who may receive training as students, but often struggle to maintain positive attitudes once they are employed in workplaces where negative attitudes toward people with mental illness are pervasive2. Structural reforms to facilitate collaboration between health services, employment services, employers and social services are also likely to be essential to extending inclusion in competitive employment7. In the broader community, we also need to build the evidence base for interventions to tackle fears about unpredictability, burdensomeness and lowered productivity. Campaigns and educational interventions with key messages that focus on the contribution that people with mental illness can make, as well as specific and practical suggestions for employers to provide support, should be adequately resourced and supported, including with ongoing training. Supporting small-to-medium businesses is likely to be particularly important as, while they are employers of large numbers of people, they do not typically have the support of Human Resources departments. Given that many recent mental health awareness and anti-stigma campaigns have tended to move away from diagnostic terms in favour of non-specific ones, such as mental health challenges or mental health issues, innovative programs should have their messaging and content carefully developed and rigorously evaluated. A particular challenge is likely to relate to striking a balance between being realistic and adopting a strengths-based focus. This is likely to require a nuanced approach that does not lend itself well to brief messaging. We need to explicitly test programs and campaign messages that are realistic and do not shy away from the challenges of having severe mental illness, but that build empathy and understanding. They should also explore how to specifically acknowledge the benefits and strengths that lived experience of mental illness can bring, including greater empathy, interpersonal skills, assertiveness, creativity, adaptability and resilience. A focus on positive, supportive behaviors – what people can do rather than what they should not – is also likely to be important, as evidenced by the anti-stigma effects of Mental Health First Aid training8. People with lived experience of severe mental illness should be empowered and supported to have central and active roles in all aspects of stigma reduction. Inclusive stakeholder engagement, involving employers, health professionals and other end-users, is also critical. Programs and campaigns developed with input only from a limited group of people may not capture the diversity of perspectives necessary for broad applicability. Ultimately, the effectiveness of stigma reduction programs should be measured by their ability to bring about tangible behavior change in their target audiences. With some exceptions, rigorous evaluation has generally not been a strength of anti-stigma programs. A 2018 meta-analysis9 of trials of interventions aiming to reduce stigma towards severe mental illness showed that educational and “contact” interventions had small-to-medium effects on attitudes. However, many trials lacked methodological rigor, with common problems including lack of credible control groups, use of convenience samples, and failure to measure longer-term impacts, assess mechanisms of change, or include behavioral (rather than attitudinal) measures. Future efforts should build on successful initiatives that have shifted public attitudes towards anxiety and depression, and now urgently expand to addressing attitudes and behaviors towards people with severe mental illness.