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Committee on the Science of Changing Behavioral Health Social Norms; Board on Behavioral, Cognitive, and Sensory Sciences; Division of Behavioral and Social Sciences and Education; National Academies of Sciences, Engineering, and Medicine. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington (DC): National Academies Press (US); 2016 Aug 3.

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Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change.

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4Approaches to Reducing Stigma

This chapter describes other national and large-scale anti-stigma interventions that have been implemented and evaluated. They include three major ongoing or completed anti-stigma interventions from Australia, Canada, and England that have been evaluated with reference to the targets, goals, and outcomes, as well as the level of stigma they addressed—structural, public, and or self—and the intervention type, that is, whether it involved protest and advocacy, education, and direct contact or contact-based education. When relevant information is available, the descriptions of the interventions also include a discussion of both their intended outcomes and unintended consequences. As noted above, the dearth of data on what works to reduce stigma is particularly acute as it relates to substance use disorders, and it is not always clear that findings related to mental illness can be generalized to substance use disorders, or even applied across all mental disorders.

APPROACHES AND STRATEGIES

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).

EVIDENCE FROM LARGE-SCALE CAMPAIGNS

The section describes the findings from large-scale campaigns in and outside the United States, including three national-level campaigns from Australia (beyondblue), Canada (Opening Minds), and England (Time to Change). The large-scale campaigns in the United States reviewed by the committee included the Eliminations of Barriers Initiative and What a Difference a Friend Makes, along with notable state-based initiatives such as the California Mental Health Services Authority, and efforts on the part of the U.S. Departments of Defense and Veterans Affairs (VA) to reduce mental health stigma and encourage treatment-seeking among members of the military and military veterans, including Make the Connection and the Real Warriors campaign.

Under the California Mental Health Services Act, a statewide prevention and early intervention program was set up, composed of three strategic initiatives that focused on (1) reduction of stigma and discrimination toward those with mental illness, (2) prevention of suicide, and (3) improvement in student mental health. Each initiative is implemented with the help of community partner agencies. Preliminary evaluations of the act show that social marketing materials designed for the program reached a large number of Californians. Beyond the reach of the materials, findings show that stigma against mental illness has decreased in California, with more people reporting a willingness to socialize with, live next door to, and work with people experiencing mental illness. People also reported that they are providing greater social support to those with mental illness (Collins et al., 2015).

The VA's Make the Connection website hosts a wealth of behavioral health resources for veterans, and serves as a venue by which veterans can share their lived experiences. In particular, Make the Connection focuses on sharing positive stories of veterans who reached out to receive help for their mental health problems (Langford et al., 2013).

The Real Warriors campaign is a large-scale multimedia program with the goal of facilitating recovery, promoting resilience, and supporting the reintegration of service members, veterans, and families. The Real Warriors campaign is based on the health-belief model and serves as an example of an evidence-based media campaign, and notably one informed by ongoing independent evaluations (Acosta et al., 2012; Langford et al., 2013).

Large-scale anti-stigma campaigns have been undertaken in many other countries as well, for example, Scotland's See Me campaign,5 a long-term effort begun in 2002 that mobilizes people and groups to work collaboratively with a focus on negative behavior change and human rights issues; One of Us,6 a relatively new (2011) campaign in Denmark that includes a focus on young people, the labor market, service uses and providers, and the media; and Spain's 1decada4 campaign,7 which seeks to make mental illness more visible to increase social acceptance of the one in four people who will have a mental disorder during their lives.

The committee focused on Time to Change (England), Opening Minds (Canada), and beyondblue (Australia) because of the national-level scale of these campaigns and the robustness of the outcome evaluations (see Table 4-1). The committee invited researchers from these three campaigns to present their findings at a public workshop held by the committee in April 2015 (see Appendix A).

TABLE 4-1. National Campaigns Modeling Successful Interventions.

TABLE 4-1

National Campaigns Modeling Successful Interventions.

Presenters were asked to address three questions: (1) What did they do? (2) How did they evaluate the campaign? and (3) What did they find? The researchers were also asked to share both the successes and the challenges of the campaigns. The committee members discussed the information obtained during the workshops and from the relevant peer-reviewed literature and deliberated about how best to apply the findings within a U.S. context. The three foreign campaigns are summarized below based on the key questions stated above. The information presented in these summaries was drawn from the researchers' presentations, published reports of campaign outcomes, and the peer-reviewed literature.

Table 4-1 and the discussion that follows summarize the lessons learned from successful well-evaluated national-scale campaigns about how to inform a national dialogue and improve public attitudes and behaviors concerning people with mental and substance use disorders at the population level using multifaceted, long-term strategies that engage state, local, and grassroots community groups; permit the scaling up of successful smaller scale interventions; and facilitate research on what works to reduce stigma in population subgroups, such as racial and ethnic minorities and relevant target groups, such as educators, employers, and health care providers.

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).

What Did They Do?

Time to Change is England's largest ever program to reduce stigma and discrimination against people with mental health problems.8 The project began in 2008 and is ongoing. Funding covered the development and implementation of the anti-stigma activities, as well as evaluation activities, including the collection of nationally representative baseline data and follow-on surveys of the English population from which progress could be measured in the future. Between 2008 and 2015, the project received £40 million ($60 million U.S.) to design and deliver a multiphase, multifaceted campaign that included

  • social marketing and mass media activity at the national level to raise awareness of mental health issues;
  • local community events to bring people with and without mental health problems together;
  • a grant program to fund grassroots projects led by people with mental health problems;
  • a program to empower a network of people with experience of mental health problems to challenge discrimination; and
  • targeted work with stakeholders, for example, medical students, teachers in training, employers, and young people.

Funding also allowed the campaign to do formative research during the first year involving more than 4,000 people with direct experience of mental health problems to provide input on stigma and discrimination and specific targets for change, which then guided the campaign.

Examples of Activities

Based on insight from the developmental phase, the mass media campaign (including national television, print, radio, and outdoor and online advertisement and social media as well as cinema) targeted specific groups of individuals. The film Schizo,9 one component of the national-level campaign, was shown in movie theatres across the country, and later adapted for use in the United States. Nationally representative surveys of the general public concerning knowledge, attitudes, and behavior in relation to people with mental health problems were used to assess change over time. At the community and grassroots levels, the project included varied activities based on the theme “start a conversation.” Community-level social contact included “Living Libraries” where, instead of borrowing only books, library visitors could borrow a person and hear about firsthand experiences of stigma discrimination from those with lived experience of mental illness. Data were collected at the community level during these social contact events in different cities across England to assess the relationship between the quality of the social contact and intended stigmatizing behavior and campaign engagement. Grassroots-level components also included volunteer-led activities (contact-based and peer-service programs) at college campuses and other public places that provided data on the impact of disclosure of mental or substance use disorders on self-stigma and the sense of well-being and empowerment, again through the use of validated tools.

How Did They Evaluate the Campaign?

Time to Change is notable for the depth and breadth of its evaluation. Although the campaign included various types of activities at multiple levels of society, the main outcome measures were common across most activities. To assess changes among the general public, the main outcome measures included the following validated assessments: (1) change in knowledge measured by the 12- item Mental Health Knowledge Schedule) comprising 6 items to assess stigma-related mental health knowledge and 6 items about the classification of conditions as a mental illness; (2) change in attitudes using 26-item Community Attitudes Toward Mental Illness, covering attitudes related to prejudice and exclusion and also tolerance and support for community care; and (3) change in behavior, both reported and intended, assessed using the 8-item Reported and Intended Behavior Scale (RIBS).10 Additionally, 1,000 people with a diagnosed mental illness and recently in contact with secondary mental health services were interviewed annually (different individuals each year) about the discrimination they face using the Discrimination and Stigma Scale. Additional assessments included monitoring of changes in media reporting; surveys of relevant groups including trainee teachers, medical students, and employers; and cost-benefit analyses.

What Did They Find?

The multilevel, multifaceted approach increased public understanding of stigma and discrimination against people with mental illness, which formative research in the first year had revealed to be low at the start of the project. Triangulation, use of a variety of different research methods, allowed the researchers to tease apart complex social norms about mental illness and increased understanding of the mediating role of social contact in explaining the effects of the anti-stigma interventions. The findings also underscore the importance of measuring both direct and indirect effects, and to consider the mechanisms of change including openness and disclosure, contact, and awareness.

The national scale social marketing campaign included mass media components and assessment of knowledge, attitudes, and behavior across the country. The social marketing mass media component of the campaign was most effective at influencing intended behavior toward people with mental illness. Despite a lack of improvement overall in knowledge or attitudes, one RIBS survey item (“In the future, I would be willing to live with someone with a mental health problem”) showed consistent improvement (from 29.3 to 44.4%) across the total target population. Other intended behaviors, including willingness to work with, live nearby, or continue a relationship with someone with a mental health problem, showed more modest improvements. Critically, there was also a significant reduction in levels of discrimination reported by people with mental illness. Assessment of newspaper coverage across England revealed an increased proportion of balanced, anti-stigmatizing articles reporting on mental health issues.

Time to Change adds to the growing evidence base supporting the effectiveness of social contact and demonstrates the value of creativity in designing community level, contact-based programs to reduce public stigma. The grassroots-level activities reduced self-stigma through its community initiatives. Among the participants with mental health problems, almost one-half (49%) reported that they had disclosed their condition during the event. A similar proportion of participants (48%) said that they had met someone with a mental health problem during the event, and more than half of all participants (58%) said they had met someone without a mental health problem during the event. These outcomes are salient because selective disclosure can facilitate positive social contact, and intergroup interactions between people with and without mental illness helps reduce stigmatizing “us versus them” thinking.

Participants were asked to describe their meetings in terms of positive contact factors including the sense of social equity and the feeling of working together toward common goals. People without mental illness who reported more contact factors were more likely to say that they would be more supportive of people with mental illness in the future (Evans-Lacko et al., 2012b). In this study, data were synthesized from a number of interventions across England. The findings indicate that social contact interventions can be implemented and evaluated on a large scale, and suggest that larger sample sizes and the use of control groups could facilitate research on differences among population subgroups.

Finally, Time to Change provides data on the cost-effectiveness of long-term, multilevel, national-scale anti-stigma efforts. Phase one of the campaign was rolled out in six successive “bursts” with public awareness of the campaign measured after each burst (“Can you think of any campaigns, that is advertising or events in the local community, you have seen or heard concerning mental health or mental health problems?”). Awareness was strongly associated with campaign burst expenditure and increased awareness was positively associated with increased knowledge, more favorable attitudes, and improved intended behavior. Project estimates of the cost of improved intended behavior toward people with mental illness range from £2 to £4 ($3-$6) per person. The annual program cost for Time to Change was 0.01 percent of the annual cost of mental health care in the United Kingdom, less than the amounts spent for analogous public health campaigns on obesity (0.12%), alcohol misuse (0.04%), and stroke (0.18%).

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.

What Did They Do?

beyondblue is an Australian not-for-profit organization that began as “beyondblue: the national depression initiative” but now addresses both depression and anxiety. The initiative grew out of efforts beginning in the 1990s to improve the knowledge and skills of primary care practitioners to address mental health problems. The goal of the mental health literacy campaign was to raise awareness of the importance of the public's knowledge, beliefs, and skills related to mental disorders, including prevention and treatment. There were five priority areas: community awareness and de-stigmatization, consumer and caregiver support, prevention and early intervention, primary care training and support, and applied research. Information was disseminated and messages conveyed over multiple media platforms, including television, radio, the internet, and print media. beyondblue partnered with an organization called Schools Television to raise awareness and provide information about mental illness and engaged well-known actors to talk openly about their personal experiences with mental illness (Dunt et al., 2010).

The activities are largely funded by the Australian national government and some of the territorial (state) governments, with some financial and in-kind support from nongovernmental sources. The organization began its work in 2000 as a 5-year initiative yet it continues.

Examples of Activities

There were many varied activities including mass-media advertising, sponsorship of events, community education programs, training of prominent people as champions, and web and print information. Mental Health First Aid training was developed in Australia in 2000 by Betty Kitchener starting as a small volunteer effort that has now been replicated in many other countries (Clay, 2013). Other prominent interventions included Mind Matters, programs in high school that are incorporated into regular lessons; RUOK Day—people ask others about their mental well-being “Are you OK?”; Rotary community forums on mental illness across the country that involve elected officials and average citizens; and Mindframe, a national media initiative that includes training programs and guidelines for responsible reporting about suicide. The campaign also provides funding to initiate and continue research on depression and anxiety, and over the course of the campaign, the funded research activities have grown in number and been more aligned with stakeholder-identified priorities (Dunt et al., 2010).

What Did They Find?

Periodic surveys of national mental health literacy were conducted in Australia from the mid-1990s allowing researchers to monitor trends in public attitudes before and during the implementation of beyondblue. Survey respondents viewed vignettes of depressed persons and then responded to questions about a range of possible interventions (seeing a psychologist, taking antidepressants, having psychotherapy, and dealing with it alone) and whether they thought these would be effective in treating depression. During its first 5 years, beyondblue had higher levels of activity in some Australian states and territories than in others, creating de facto treatment and control groups. In states with higher levels of activities (those that provided a higher level of support), there was greater improvement in public awareness of depression as a problem, beliefs about the benefits and efficacy of treatment, and positive attitudes about people with depression (Jorm, 2012; Jorm et al., 2005, 2006).

Meta-analyses of trials of Mental Health First Aid training program outcomes show moderate increases in knowledge about mental illness and smaller effects on attitudes and behaviors. Improvements were sustained over 6 months. To date, the program has trained and certified 2 percent of Australian adults, with a goal of 11 percent. People and organizations will pay for this training as they pay for other first-aid training. This allows program sustainability beyond government funding periods (Jorm and Kitchener, 2011).

Although the researchers are not certain which interventions led to these improvements, it is clear that the concept of mental health literacy as a desirable aim was incorporated into national and state policy goals. A national survey found that at the 10-year mark in the implementation of the campaign 87 percent of Australians were aware of its work. Between the publication of the first beyondblue report in 2004 and the second in 2009, there was a significant nationwide increase in the availability of primary care services for depression (Dunt et al., 2010). According to the 2009 report, researchers were unable to determine whether people with depression experienced a reduction in stigma and discrimination as public awareness increased, and although survey data show a steady decrease in social distance overtime. Public perception of depressed people as dangerous (68%) and unpredictable (52%) persists.

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.

What Did They Do?

The commission began Opening Minds with a small, public education media campaign designed to communicate positive messages about people with mental illness. The results were disappointing and the commission decided against a costly, long-term social media campaign (Stuart et al., 2014b).

Instead, the project team issued a request for interest. It was distributed to a wide network of government agencies, universities, stakeholders, and existing grassroots anti-stigma programs across Canada. These initiatives shared one thing in common: they all used some form of contact-based education. The project team linked them with Opening Minds researchers for evaluation and scale-up of effective programs. Work focused on four target groups: youths aged 12-18, health care providers, the workforce or employers, and the news media. Principal investigators were recruited from leading Canadian universities for each target group.

The project teams used similar evaluation strategies so that researchers could compare outcomes across settings to help determine which program activities would yield the greatest effects. The goal was to develop effective, evidence-based models that could be replicated and disseminated to other communities and stakeholders who want to begin antistigma efforts.

Examples of Activities

One activity is “HEADSTRONG,” a program targeting youth. This activity brings together youth from local high schools to a regional summit where they participate in exercises, learn about the problems created by stigma, and hear stories from people with lived experience of mental health problems or mental illnesses. Equipped with toolkits and examples of anti-stigma activities, these students go back to their schools and lead anti-stigma efforts bringing mental health awareness along with messages of hope and recovery. The youth champions are also supported by a coordinator who links them with a coalition of community groups, which also provides resources and access to speakers.

HEADSTRONG included and involved

  • 19 regional coordinators,
  • 132 students at a National Summit,
  • 27 regional summits in the 2014-2015 school year,
  • 3 provincial events with HEADSTRONG activities and workshops, and
  • approximately 4,450 student participants (with the potential to reach approximately 186,000 high school students through future school-based activities and community coalitions).

Another activity was “Understanding Stigma”, an anti-stigma program aimed at health care professionals that emerged as one of Opening Mind's most effective anti-stigma programs. The program comprises a 2-hour workshop that includes six key ingredients such as a PowerPoint show of famous people with mental illness that also functions as an introduction to stigma; a group exercise comparing earaches with depression to illustrate the need for timely treatment and social support; a short discussion of the definition of stigma as a form of prejudice and discrimination; along with locally made films, myth-busting (countering myths about mental illness), and a keynote speech by a person with mental illness that engenders discussion among participants. Workshops were originally developed for use by emergency room staff, but they were later adapted for other groups. The program objectives are to raise awareness among health professionals of their own attitudes; to provide them with an opportunity to hear personal stories of mental illness, hope, and recovery from people with mental illness; and to demonstrate that health care providers can make a positive difference. The program also includes pre- and posttests as well as take-home resources and the opportunity to sign an anti-stigma commitment.

Opening Minds has also produced a guide for media reporting on mental health. Mindset: Reporting on Mental Health12 includes sections that help journalists distinguish among various mental disorders (stressing that mental illness is a broad category and reporting should specify diagnoses), and guidelines for interviewing people with and about mental illness, and appropriate language to use when reporting on mental illness, suicide, and addiction.

How Did They Evaluate the Campaign?

Researchers evaluated the Opening Minds programs using mixed methods, including qualitative methods such as focus groups and standardized instruments to measure stigma and social distance pre- and postprogram implementation. The researchers developed fidelity scales for contact-based education programs. This was done to ensure that programs followed best practice guidelines.

What Did They Find?

In the Opening Minds campaign, researchers worked with existing anti-stigma initiatives and aided them in evaluating their programs and implementing change to improve those outcomes. This approach allowed the team to develop a set of evidence-based criteria for evaluating programs. Among the findings documented in the interim report on Opening Mind's (2013) are that some programs for young people actually did harm by concretizing negative stereotypes. Similarly, while contact-based education programs were the most effective type of anti-stigma effort overall, the message matters and the most successful programs featured stories of hope and recovery. Finally, peer training and support was essential as storytellers had to be psychologically ready to share their stories, able to engage the audience, and handle questions and open discussions.

Design and delivery were important factors in the success of the programs for health professionals, but short programs worked as well as longer programs. The most successful programs used multiple forms of contact-based education, including live personal testimony as well as taped events. Successful programs had incentives or expectations of participation by the health care professionals, such as continuing education credits, being paid for their time, or receiving paid time off. Physicians were particularly difficult to engage. In a meta-analysis of the findings from more than 20 “Understanding Stigma” programs aimed at health professionals, the researchers found that the quality of the contact provided was more important than the duration of the contact, and that the interventions that included all six key ingredients had the strongest positive outcomes. The ingredients most predictive of positive change were messages that focused on recovery and inclusion in multiple forms or points of contact (Knaak et al., 2014).

Among the lessons learned was that programs that targeted a specific mental illness may reduce stigma to a greater degree than those that target mental illness in general. In the future, the Opening Mind's team will focus on identifying the components of successful programs, how success in reducing stigma varies by health care professional target audience, and what processes actually bring about positive changes in attitudes and intended behavior toward people with mental illness.

In an analysis of more than 20,000 print articles from 2005 to the present in Canadian newspapers along with 1,300 television reports, the campaign found that 40 percent of newspaper articles focused on crime and violence and only 20 percent focused on recovery, shortage of resources, and issues related to treatment. Less than 25 percent of the articles included the voice of someone with lived experience of mental illness or the voice of a mental health expert. As in other countries, including the United States, journalists quickly assigned psychiatric labels to people who had committed shocking crimes without solid evidence that the person had a mental illness. To change this harmful practice, Opening Minds joined with journalism schools across Canada to develop a curriculum that included contact-based education, preferably delivered by a graduate of the school. The curriculum includes the Mindset guide about reporting on tragic events. 5000 copies have been distributed.

The following is a summary of the findings of the Opening Minds campaign (Mental Health Commission of Canada, 2013):

  • Big media campaigns are not effective at changing attitudes.
  • One-time only sessions do not work, boosters are needed (immunization model).
  • Voluntary attendance is not effective.
  • Not all contact-based education is effective.
  • Grassroots networks and local champions are needed.

Contact-based education emerged as the choice strategy for stigma reduction. Building partnerships with community and grassroots groups coupled with the development of a process for systematic evaluation and standardized interventions and outcome measures allowed the team to develop a set of best practices. The plan for the next phase is to scale-up successful approaches for nationwide implementation (Stuart et al., 2014b).

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).

Footnotes

1

For more information about In One Voice, see http://www​.mindcheck.ca/inonevoice [March 2016].

2

For more information on mental health first aid, see http://www​.mentalhealthfirstaid.org [March 2016].

3

For more information on the Active Minds Speakers Bureau, see http://activeminds​.org​/our-programming/active-minds-speakers-bureau [March 2016].

4

SAMHSA's Consumer-Operated Service Evidence-Based Practices Toolkit can be found at https://store​.samhsa​.gov/shin/content/SMA11-4633CD-DVD​/TheEvidence-COSP.pdf [March 2016].

5

For more Information about Scotland's See Me campaign, see https://www​.seemescotland.org/ [March 2016].

6

For more information about Denmark's One of Us, see the campaign's English-language website at http://www​.en-af-os.dk/English.aspx/ [March 2016].

7

For more information about Spain's 1decada4, see the campaign's English-language website at http://www​.1decada4.es/course/view​.php?id=2 [March 2016].

8

For more information about England's Time to Change, see http://www​.time-to-change.org/uk [March 2016].

9

The film can be viewed on YouTube, see https://www​.youtube.com​/watch?v=J-JV-BO7nLv0 [March 2016].

10

For further information on the validated scales, see http://www​.kcl.ac.uk​/ioppn/depts/hspr/research​/ciemh/cmh/CMH-Measures.aspx [March 2016].

11
12

For more information about the Mindset Media Guide, see http://www​.mindset-mediaguide.ca/ [March 2016].

Copyright 2016 by the National Academy of Sciences. All rights reserved.
Bookshelf ID: NBK384914

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