Education

Educational anti-stigma interventions present factual information about the stigmatized condition with the goal of correcting misinformation or contradicting negative attitudes and beliefs. They counter inaccurate stereotypes or myths by replacing them with factual information. An example would be an education campaign to counter the idea that people with mental illness are violent murderers by presenting statistics showing that homicide rates are similar among people with mental illness and the general public (Corrigan et al., 2012). Most of the evidence on educational interventions has been on stigma related to mental illness rather than substance use disorders.

Educational campaigns can be designed for any scale, from local to national, which may explain the status of education interventions as the best-evaluated stigma change tactic (Griffiths et al., 2014; Quinn et al., 2014). Although generally aimed at combating public stigma, educational interventions have been found to be effective in reducing self-stigma, improving stress management, and boosting self-esteem when delivered as a component of cognitive and behavioral therapy (Cook et al., 2014; Heijnders and Van Der Meij, 2006). They have also been effective in acceptance and commitment therapy (Corrigan et al., 2013), an intervention that uses acceptance and mindfulness strategies, together with commitment and behavior change strategies, to change values about mental health and illness (see Hayes et al., 2006).

Evidence is mixed on the effectiveness of educational interventions in changing public stigma in a significant and lasting way (Corrigan et al., 2012, 2015a; Griffiths et al., 2014). For example, Scotland's See Me campaign aimed to correct inaccurate portrayals of mental illness in an effort to normalize the public to mental illness. Surveys conducted 2 years after the start of the campaign showed an 11 percent drop in the expressed belief that the public should be better protected from people with mental health problems and a 17 percent drop in the perception that mentally ill people are dangerous (Dunion and Gordon, 2005). A meta-analysis of public stigma-reduction interventions that included educational programs, found decreases in stigma related to mental illness, psychosis, depression, and all diagnoses combined (Griffiths et al., 2014). Notably, there was no advantage to internet-based interventions over face-to-face interventions (Griffiths et al., 2014).

See Me was a multiyear campaign delivered over multiple platforms. In contrast, a brief social media intervention in Canada called In One Voice¹ resulted in improved attitudes toward mental health issues and less social distance at the 1-year follow-up. However, the participants reported that they did not gain knowledge or confidence about how to help someone experiencing a mental health problem, nor did the intervention motivate young people to engage in more helpful or supportive behaviors toward those with mental health needs. The authors concluded that their study contributes to a growing body of evidence showing that brief media anti-stigma and mental health literacy campaigns do not result in significant and lasting change, especially in the area of behavior (Livingston et al., 2014).

A review of European anti-stigma programs found that adolescents especially showed significant change in their beliefs and attitudes in response to education (Borschmann et al., 2014). There is more variance in adolescents' beliefs about mental illness than in adults' beliefs, which may partly explain their greater responsiveness to educational interventions. Corrigan and colleagues (2012) observed that across all studies included in their meta-analysis, education was more effective than contact-base interventions in changing stigmatizing attitudes among adolescents. Adults' attitudes about mental illness and help-seeking behaviors also vary by age. In a recent national survey, younger adults were more likely than older adults to view help-seeking as a sign of strength and more likely to believe that suicide is preventable. Adults aged 54 and under were also more likely to have received treatment for a mental health condition than were those aged 55 and over (American Foundation for Suicide Prevention, 2015).

Among adolescents, online information-gathering and social support-seeking are especially popular (Birnbaum et al., 2014). When first experiencing the onset of symptoms of mental disorders, many adolescents turn to the internet as their first source of advice. In a 2014 study, Birnbaum and colleagues examined the online results yielded from hypothetical search terms used by adolescents experiencing the onset of symptoms of schizophrenia. The research team entered queries, such as “Is it normal to hear voices?” and “Do I have schizophrenia?” into Google, Facebook, and Twitter to determine the accuracy of the search results. Overwhelmingly the search results failed to direct people toward professional evaluation and some of the search results were stigmatizing in nature (Birnbaum et al., 2014).

Educational campaigns that provide information about the biogenesis of mental illness by highlighting the genetic components of schizophrenia have sometimes had unintended and stigmatizing consequences. Such messages were used to reduce the blame placed on mentally ill people for their condition (Schomerus et al., 2012). Despite their medical accuracy, these messages can intensify negative attitudes and behaviors by unintentionally drawing attention to the “differentness” of mentally ill people and diverting attention from the possibility of recovery. For example, one meta-analysis found that, when educational materials highlighted biogenetic causes of mental illness, participants were less likely to blame people with mental illness; however, they were more likely to believe that people with mental illness had low chances of recovery and more likely to say that they did not want to interact with them (Kvaale et al., 2013a). In addition, biogenetic messages may unintentionally trigger a message of hopelessness in people with mental illness, which can reinforce self-stigma and inhibit the pursuit of wellness goals (Kvaale et al., 2013a). Although these historical efforts were successful in decreasing attributional stigma, they are no longer considered effective or sufficient stigma change strategies by themselves (Corrigan et al., 2012).

Social media can also perpetuate negative stereotypes about mental and substance use disorders. In a 2015 study, Joseph and colleagues analyzed tweets about diabetes and schizophrenia, to compare the attitudes toward and perceptions of these chronic illnesses in informal online conversations. They found that tweets about schizophrenia were significantly less likely to be medically accurate and more likely to be sarcastic and negative in tone than tweets about diabetes (Joseph et al., 2015).

Mental Health Literacy Campaigns

Mental health literacy programs are a common educational strategy. Educators, health professionals, and policy makers have recognized the important role of schools in addressing the mental health needs of young people and have endorsed the implementation of school mental health programs (Wei et al., 2013). There is evidence that some in-school mental health literacy programs improve knowledge, attitudes, and help-seeking behavior, but more research is needed before decisions to scale-up mental health literacy campaigns to the national level. There is also some evidence that basic health education to improve mental health literacy may be effective in reducing stigma for school-age children; however, to improve public attitudes without negatively impacting self-stigma, the curricula need to be recovery focused and developmentally and cognitively tailored to different age groups (Wei et al., 2013). One such program is mental health first-aid, in-person training that teaches participants to respond to developing mental health problems and crises.²

Mental health literacy campaigns have also focused on how to encourage individuals and families to seek needed services (Jorm, 2012). This is an important goal because early diagnosis and treatment are predictive of improved outcomes, but high-quality, culturally informed treatment is not widely available, especially to racial and ethnic minority groups (Pescosolido et al., 2008a). The behavioral model of health service use, which was first used to identify factors that influenced families' utilization of health care services (Andersen, 1995), has been expanded for use in examining health-seeking behaviors for many different groups including minorities and children and adolescents. Eiraldi and colleagues (2006) used the original model to develop a help-seeking model for mental health service use among ethnic minority families. They identified four stages in the process of deciding to seek care for a child with symptoms of attention deficit hyperactivity disorder: problem recognition, the decision to seek help, service selection, and service utilization. The researchers noted that the problem-recognition stage is particularly important as it is the first step in access to care. Families are more likely to seek treatment for symptoms attributed to illness than for symptoms attributed to family relations or personality factors (Yeh et al., 2005).

Although campaigns that promote biogenic explanations of mental and substance use disorders are not generally effective in reducing perceptions of dangerousness and desire for social distance among the general public, there is evidence that biogenic cause attributions reduce blame (Kvaale et al., 2013a, 2013b). Biogenic explanations may help counter culturally specific negative attitudes about mental disorders (Angermeyer et al., 2011; Yang et al., 2013) and promote parental help-seeking behaviors for children's mental health problems. Efforts to close the treatment gap in access to mental health care between whites and ethnic minorities might include campaigns that target ethnic minority parents, as well as trusted community figures with messages about the biological underpinnings of mental illnesses.

Contact

Across a wide range of stigmatizing conditions, people without the stigmatized conditions have little meaningful contact with those who have these conditions. Lack of contact fosters discomfort, distrust, and fear (Cook et al., 2014). Contact interventions aim to overcome this interpersonal divide and facilitate positive interaction and connection between these groups (Shera, 1996). In contact-based behavioral health anti-stigma interventions, people with lived experience of mental illness or substance use disorders interact with the public describing their challenges and stories of success. These strategies are aimed at reducing public stigma on a person-to-person basis but have also been shown to benefit self-stigma by creating a sense of empowerment and boosting self-esteem (Corrigan et al., 2013).

Historically, contact with people with mental and substance use disorders occurred in person and through video, but now contact increasingly occurs over the internet. A Norwegian survey conducted in 2002 found that almost 75 percent of participants found it easier to discuss personal problems online rather than face to face, and almost 50 percent said they discuss problems online that they do not discuss face to face. Many comments from survey respondents demonstrated that online mental health forums have an empowering effect (Kummervold et al., 2002).

For young people in particular, online interaction might be especially beneficial and appealing. Online help-seeking is quite prevalent among adolescents who often feel empowered online and take comfort in the anonymity an online environment provides (Gould et al., 2002; Suzuki and Calzo, 2004). The Australian internet-based mental health service Reach Out! is aimed at young adults aged 16 to 25 and has been heavily trafficked (with more than 230,000 individual visits per month). Reach Out! is a safe place for young adults to seek support and share strategies and resources for dealing with mental health challenges (Webb et al., 2008).

Frequently, contact-based interventions are combined with education where factual information is presented, and the people with lived experience support and personalize the information by relating it to their own life experiences. Results of a meta-analysis of 79 studies found that effect sizes for contact on attitude change and intended behaviors were twice those of education alone (Corrigan et al., 2012). In another meta-analysis, interventions combining education and contact were equally effective as education-only interventions (Griffiths et al., 2014). Although combined interventions generally show an advantage over educational interventions alone, they are implemented less often (Borschmann et al., 2014; Corrigan et al, 2012).

A systematic review of anti-stigma programs aimed at college students by Yamaguchi and colleagues (2013) found that in-person contact and video contact were the most effective intervention types for changing attitudes and reducing social distance. Corrigan and colleagues (2012) found that in-person contact is superior to video contact, with in-person contact having twice the effect size as video contact. A systematic review of 13 studies found that education and contact-based interventions are commonly used for stigma related to substance use disorders (Livingston et al., 2012), but because of the overall dearth of studies with this focus, it is not possible to draw firm conclusions about the value of contact-based interventions over educational interventions. The preponderance of available evidence suggests that interventions that combine contact with education will be most effective.

Peer Services

Because contact-based strategies can be used to reduce both public and self-stigma, there is a wide range of potential intervention targets. One approach to integrating contact-based interventions into day-to-day activities is through the use of peer services (see Chapter 3). Peer service providers are people with lived experience who work as health care team members and foster the provision of nonjudgmental, nondiscriminatory services while openly identifying their own experiences. When integrated into service-provision teams, peers can help others to identify problems and suggest effective coping strategies (Armstrong et al., 1995; Corrigan and Phelan, 2004; Davidson et al., 1999; Gates et al., 1998; Mowbray, 1997). An example is found in Active Minds, a grassroots college student mental health advocacy group that reaches out to young people on college campuses across the United States with several programs including a speakers bureau.³

Peer support also acts as a counterbalance to the discrimination, rejection, and isolation people may encounter when trying to seek mental or substance use treatment and services. The supportive effects of peer interventions can help sustain longer term and more regular treatment utilization (Deegan, 1992; Markowitz, 2001; Solomon, 2004). At the same time, taking on a “helper role” can be beneficial to peer service providers on their path to recovery (Anthony, 2000; Mowbray, 1997; Schiff, 2004; Solomon, 2004). Ultimately, peer services can advance both the rights and the services agenda by facilitating treatment-seeking, fostering greater employment options, enhancing quality of life, and increasing self-efficacy in the peer service providers (Akabas and Kurzman, 2005; Gates and Akabas, 2007).

The value of peer support services in both traditional health care settings and independent programs is well recognized. In 2007, the Centers for Medicare & Medicaid issued guidelines for development and implementation of peer support services; and in 2009, the Substance Abuse and Mental Health Services Administration (SAMHSA) released the Consumer-Operated Service Evidence-Based Practices Toolkit.⁴ Some stakeholders groups are concerned about the professionalization or medicalization of peer support services (Ostrow and Adams, 2012), while others welcome efforts to introduce uniform standards for training and practice. Professionalization of peer services can be seen as part of overall efforts to improve the quality of behavioral health care and services in the United States through a certification process, such as those that exist for other providers of care and services to those with mental and substance use disorders.

One example of these efforts at the national level is the National Federation of Families for Children's Mental Health's national certification program for parents who provide support services to other parents raising a child with a behavioral health disorder. The Certified Parent Support Provider™ certification defines the uniform standards and the title of parents helping other parents who have children (aged 0 to 26) experiencing emotional, behavioral health, substance or mental health disorders or intellectual disabilities. The goal of the program is to decrease the stigma associated with behavioral health disorders and promote effective strength-based children's services that are family driven and youth guided. The program has spurred the development of a peer support workforce that can be mobilized across states. A certification commission provides independent oversight to the program and has developed guidelines for achieving competency in a wide range of domains: communication, confidentiality, current issues in children's behavioral health treatment and prevention information, decision making and effecting change, educational information, empowerment, ethics, multisystem advocacy, parenting for resiliency, use of local resources, and wellness and natural support.

Protest and Advocacy

Protest strategies are rooted in advancing civil rights agendas. In the context of this report, protest is formal objection to negative representations of people with mental illness or the nature of these illnesses. Protests are often carried out at the grassroots level by those who have experienced discrimination and by advocates on their behalf. Strategies typically employ letter writing, product boycotts, or public demonstrations (Arboleda-Flórez and Stuart, 2012). Protest messaging and advocacy can help to engage and activate “fence sitters”—people who have some investment in behavioral health stigma change but limited knowledge about how to translate their beliefs into action. A call to action can also energize unengaged stakeholders by raising awareness about the harmful effects of stigma. Group protests also provide opportunities for stakeholders to meet and develop a sense of solidarity and common purpose.

Target groups for protest and advocacy campaigns are opinion leaders, such as politicians, journalists, or community officials. The goal is typically to suppress negative attitudes or to remove negative representations or content. When protest focuses on legislative reform, the goal is often to enhance or enact protections of rights, increase access to social resources, and reduce inequalities. Protest can also serve to increase public awareness and/or policy recognition of issues and concerns related to mental health (Arboleda-Flórez and Stuart, 2012).

Among the behavioral health stigma change strategies discussed in this chapter, protest is the least studied (Griffiths et al., 2014). The HIV/AIDS movement provides a model for understanding the value of protest as a stigma change strategy and underscores the importance of evaluating both intended and unintended consequences. For example, the AIDS Coalition to Unleash Power (ACT UP) began in 1987 and continued over the course of more than 2 decades. Activities in the early years of the campaign included ACT UP members chaining themselves to the offices of pharmaceutical companies involved in the development of experimental drug treatment. This tactic was widely credited with changing the way HIV/AIDS drugs were developed and delivered. In 1989, ACT UP members occupied St. Patrick's Cathedral to protest the policies of the Roman Catholic archbishop of New York, which had the unintended consequence of reframing the public debate to focus on the issue of religious freedom (DeParle, 1990).

The National Alliance on Mental Illness encourages members to become “stigma busters” and participate in such efforts. Unfortunately, the available evidence concerning the outcomes of protest related to mental illness suggests that while protest may have positive outcomes in some instances, these strategies may also trigger psychological reactance or a rebound effect in which negative public opinion is strengthened as a result of the protest (Corrigan et al., 2001). Monitoring discussions around protest and related strategies in newspapers, radio, and television, as well as social media can aid in efforts to evaluate the outcomes of these strategies. The internet serves as a potential platform for advocacy and for monitoring changes in social norms. Psychiatrists and psychologists in particular have been identified as potentially valuable voices against stigma online, and there are calls for health professionals to take up advocacy blogging to further educate the public about mental health conditions and counter stigmatizing stereotypes (Peek et al., 2015).

Legislative and Policy Change

The United States has a long history of using legal and policy interventions to protect and normalize stigmatized groups (Cook et al., 2014), significantly beginning with the Civil Rights Act of 1964, which prohibited discrimination by race, color, religion, and national origin in all public accommodations. In the 1960s and 1970s, there was a significant drop in the mortality rate of black Americans that can be linked to legislation that prohibited racial discrimination in Medicare payments for hospital-based care (Almond et al., 2006; Krieger et al., 2008).

In 2008, in part as result of mental health advocacy efforts, Congress amended the Americans with Disabilities Act (ADA) to allow people with mental illness to be covered by the ADA even when medication reduced their symptoms. Prior to the passage of the ADA Amendments Act (ADAAA), people who responded to treatment and learned to manage their symptoms lost their protections under the ADA. The ADAAA also recognizes that people may have intermittent symptoms and that some people are treated unfairly as a result of perceived rather than actual impairment. The ADAAA's attention to the specifics of functional impairment and its nuanced approach to include discrimination based on perception stands in contrast to legislation that applies more arbitrary inclusion criteria across diverse mental illnesses (Corrigan et al., 2005b).

Throughout this report, the committee stresses the important of addressing stigma at the structural level. Much of the knowledge base concerning structural stigma, including empirical evidence, concepts, and theories, comes from research on gender and ethnic or minority differences. Structural stigma can be intentional or unintentional, overt or covert. Policies that disqualify people with mental illness from receiving health insurance coverage are an example of overt structural stigma; in contract, failure of police officials to distinguish between mental health apprehensions and suicide attempts on criminal record checks is an example of covert structural stigma or of stigma at the structural level (Mental Health Commission of Canada, 2013).

Researchers in the United States have found that people with mental illness favor approaches that address institutional and structural discrimination over those that focus on public education (Mental Health Commission of Canada, 2013). In a U.S. survey of individuals with psychiatric disabilities, one-quarter to one-half of respondents reported the experience of discrimination in social arenas, including employment (52%), housing (32%), law enforcement (27%), and education (24%) (Corrigan et al., 2003). Addressing sources of structural stigma can also promote mental and physical well-being, for example, medical and mental health care visits by lesbians, gay men, and bisexuals decreased after same-sex marriage was legalized in Massachusetts (Hatzenbuehler et al., 2012), and depression and anxiety in members of low-income families decreased when the families were provided with rental vouchers (Anderson et al., 2003).

Multidisciplinary, multilevel ecological approaches are needed to understand and address structural stigma and to engage groups and organizations, including lawyers, journalists, educators, and business and property owners, to address the root causes of structural stigma. Stigma researchers and mental health advocates suggest that anti-stigma efforts should not focus narrowly on “soft goals” of public education and attitude change but should expand their focus to address “hard goals,” such as legislative and policy change that can promote social equity and improve overall quality of life for people with mental and substance use disorders (Mental Health Commission of Canada, 2013; Stuart et al., 2012; Thornicroft et al., 2007).

Time to Change

Findings from the evaluation of Time to Change in England highlight the importance of long-term data collection, establishment of baseline trends, and ensuring a match between complex, evolving social processes such as prejudice and acceptance with nuanced (triangulated) evaluation methods, while specifying outcome indicators (targets for change) as knowledge, attitudes, or behaviors (Evans-Lacko et al., 2013a).

beyondblue

In the 1990s, the Australian government launched a national initiative to improve the knowledge and skills of primary care practitioners and other health professionals regarding mental health problems. At the time, the knowledge and skills of the general public were not seen as important. To draw attention to this gap, the researchers coined the term “mental health literacy,” defined as “knowledge and beliefs about mental disorders that aid their recognition, management, or prevention.” They defined the components of mental health literacy as:

• recognition of the disorders in oneself and others to facilitate help-seeking,
• knowledge of professional help and treatment availability,
• knowledge of effective self-help strategies,
• knowledge and skills to provide aid and support to others, and
• knowledge about how to prevent mental disorders.

Opening Minds

The Mental Health Commission of Canada was launched in 2007 with federal funding. Opening Minds is the ongoing anti-stigma initiative of the commission and was launched in 2009 with a 10-year mandate and an annual budget of $2 million.¹¹ Its goal is to change the attitudes and behaviors of Canadians toward people with a mental illness and to encourage individuals, groups, and organizations to eliminate discrimination. It is the largest systematic effort of its kind in the history of Canada. In February 2015, the Opening Minds initiative won the global innovator award at the Together Against Stigma International Conference in San Francisco, California.

Challenges and Limitations

Evaluating large-scale, multi-intervention, multilocale, long-term initiatives is challenging. Design, methods, and measurement issues are among the major challenges, specifically, reliance on nonrandomized designs; outcome data and measurements focused on change in attitude but not change in behavior; failure to differentiate attitudes toward specific behavioral health disorders; reliance on self-report data that could have social desirability effects; absence of needed baseline data and outcome measures that change over time making longitudinal assessments difficult; and suboptimal frequency of data collection. A meta-review of media campaigns in particular found that evaluations often fail to include data on financial costs, adverse effects, and unintended consequences (Clement et al., 2013).

Limitations more specific to the large-scale initiatives described above pertained to differences in surveys for different interventions and target groups; reliance on aggregated outcome data that did not always capture small changes at the community level especially since the intensity of local initiatives varied across communities; differences in baselines across communities; and challenges in measuring the outcomes of structural interventions, such as changes in government policy and regulation as a result of initiatives. It was also difficult, given the available data, to evaluate the differential impact of the initiatives on racial and ethnic minorities and to gather data on the sustainability of the intervention outcomes (Dunt et al., 2010; Evans-Lacko et al., 2014; Jorm et al., 2005; Stuart et al., 2014a, 2014b).