Improving the lives of people with mental and substance use disorders has been a priority in the United States for more than 50 years. The Community Mental Health Act of 1963 is considered a major turning point in U.S. efforts to improve behavioral health care. It ushered in an era of optimism and hope and laid the groundwork for the consumer movement and new models of recovery. The consumer movement gave voice to people with mental and substance use disorders and brought their perspectives and experience into national discussions about mental health. The first-hand experiences they shared were often narratives of recovery and social reintegration.
As mental health treatment began to shift from the hospital to the community, recovery became a goal or desired outcome of treatment. Recovery, in this context, is not synonymous with a cure; it is a personal process of movement toward a meaningful, purposeful, and satisfying life. The consumer movement stressed self-empowerment and provision of recovery-oriented support programs run by people with mental and substance use disorders (peer programs). Today, trained peer specialist service programs are integrated into community mental health services, and helping others is a recognized component of recovery. Within the stakeholder community, there are differences of opinion about the risks and benefits of professionalizing this grassroots component of behavioral health care through certification or other standardized processes of education and testing.
Consumer perspectives and the concept of recovery challenged some
of the traditional values of the U.S. mental health system, and differences of opinion continue to divide the community of mental health stakeholders across several domains, including diagnosis, treatment, and rights and services, notably as these relate to the needs of people with serious mental illness.1
More recent national efforts to improve the lives and safeguard the rights of people with mental and substance use disorders include the 1990 Americans with Disabilities Act (ADA), the 1999 Surgeon General’s Report on Mental Health, the ADA Amendments Act of 2008 that expanded protections under the ADA, the Mental Health Parity and Addiction Equity Act of 2008, and protections included in the Affordable Care Act of 2010, as well as other federal-level disability nondiscrimination laws.
Over the same 50-year period, positive change in American public attitudes and beliefs about mental and substance use disorders has lagged behind these advances. “Stigma” is used in the peer-reviewed literature and by the general public to refer to a range of negative attitudes, beliefs, and behaviors. The term stigma itself has been targeted for change by some stakeholder groups, and the Substance Abuse and Mental Health Services Administration (SAMHSA) is moving away from use of this term. In this report, the word stigma and its variants are used, except where the report discusses a more specific dimension of stigma such as prejudicial beliefs or discriminatory practices.
There are considerable gaps in the evidence base on the relationships among behavioral disorders, violence, suicide, and guns, as well as gaps in knowledge about effective policies to reduce gun violence and suicide. Studies have shown that there is a greater relative risk of violence in people with mental illness than in those without mental illness, but the risk is actually very small. Moreover, people with mental illness are more likely to be victims than perpetrators of crime. The risk of violence is greater for people with schizophrenia, bipolar disorder, co-occurring substance use disorder, and those exposed to certain socioeconomic factors, such as poverty, crime victimization, early life trauma, and living in a neighborhood with a high crime rate. Higher incidences of violence are observed in people with substance use disorders and antisocial personality disorders than in people with other psychiatric disorders. The risk of suicide as another form of violence is increased by concurrent substance use; symptoms such as hopelessness and depression; psychotic disorders; bipolar disorder; and environmental factors, such as access to guns and media reports of suicide.
Stigma is not a problem that affects only a few. Most estimates agree
1 Serious mental illness is defined as mental illness resulting in serious functional impairment that substantially interferes with or limits one or more major life activities.
that roughly 1 in 4 or 1 in 5 Americans will experience a mental health problem or will misuse alcohol or drugs during their lifetime. In 2014, nearly 44 million Americans aged 12 and older experienced a mental health problem, and for almost 10 million adults, this was a serious mental illness that met standard diagnostic criteria. In 2013, 17 million adults said that they were misusing or dependent on alcohol, and 24 million people over the age of 12 said that they had used illicit drugs during the prior month. Furthermore, many people are not getting the treatment they may need. Of the 28 million Americans in 2013 who needed treatment for a problem related to alcohol and drugs (that is, met diagnostic criteria), fewer than 1 in 10 received any treatment.
As part of national efforts to understand and change attitudes, beliefs, and behaviors that can lead to stigma and discrimination, the Office of the Assistant Secretary for Planning and Evaluation and SAMHSA of the U.S. Department of Health and Human Services asked the National Research Council and Institute of Medicine to undertake a study of the science of stigma change. In response to that request, the Committee on the Science of Changing Behavioral Health Social Norms was set up under the Board on Behavioral, Cognitive, and Sensory Sciences. The committee was asked to review and discuss evidence on (1) the change in behavioral health norms needed to support individuals with mental and substance use disorders to seek treatment and other supportive services; (2) discrimination, negative attitudes, and stereotyping faced by individuals with mental or substance use disorders; and (3) public knowledge about behavioral health, including how to seek help for people with such disorders.
After reviewing a broad range of available evidence about what works to decrease stigma and to promote affirming attitudes and behaviors, the committee developed recommendations for SAMHSA’s Office of Communications and Center for Behavioral Health Statistics and Quality in the areas of communications science and stigma research. The committee also offers a set of conclusions and recommendations about successful stigma change campaigns, how best to encourage people to seek treatment and supportive services for themselves or others, and the research needed to inform and evaluate these efforts in the United States.
PUBLIC KNOWLEDGE AND NORMS
In 1950, the first major national study of public stigma was launched followed by three congressionally mandated studies in 1955, 1956, and 1976 that documented an extreme lack of public knowledge about the nature and causes of mental illness and a deep unwillingness to discuss mental illness. More current public attitudes have been captured through recent population-based surveys, including data from five modules in
the General Social Survey fielded between 1996 and 2006 that focused on stigma of mental illness as it is reflected in stereotypes, help- or treatment-seeking, and behavioral dispositions toward people with mental and substance use disorders (how people thought they would behave).
From 1996 to 2006, the stigma associated with mental health treatment decreased, and support for treatment-seeking increased among the general public. More than 80 percent of adults agreed that treatment is effective, and those living in states with higher per capita expenditures on mental health services were more likely to agree that treatment is effective and more likely to report that they had received mental health treatment. By 1996, public knowledge had increased such that respondents differentiated between “problems of daily living” and standard psychiatric disorders. Stigma levels for the former decreased between 1996 and 2006 but stigma related to psychiatric disorders remained high. In 2006, stigma against children and adolescents was lower than that for adults, but nearly one-third of respondents said they would not want their child to befriend a child with depression. One-half of all adult respondents said that treatment would result in discrimination and long-term negative effects on a child’s future. Also of importance, despite this large body of evidence on public attitudes, little is known about the relationship between attitudes and actual behaviors toward people with mental and substance use disorders.
In comparing these results to the earlier surveys from the 1950s, researchers found that public knowledge about mental and substance use disorders has increased, specifically concerning the neurobiological underpinnings of mental illness. At the same time, however, beliefs about the underlying causes of substance use disorders have shifted away from the idea of illness in the direction of blame. There is greater public awareness of the stigma associated with both mental and substance use disorders yet public stigma persists at a high level. Data show marked differences across behavioral health conditions: schizophrenia and substance use disorders are more highly stigmatized than other mental disorders; few stigma studies focus specifically on substance use disorders. Perceptions about the dangerousness and unpredictability of people with mental and substance use disorders have increased over time.
CONSEQUENCES OF STIGMA
Stigma is a dynamic multidimensional, multilevel phenomenon that occurs at three levels of society—structural (laws, regulations, policies), public (attitudes, beliefs, and behaviors of individuals and groups), and self-stigma (internalized negative stereotypes). A hallmark of stigma, like stereotyping, is that it overgeneralizes. People who have mental or
substance use disorders do not form a discrete, static, or homogeneous group. These disorders can vary among individuals and across a person’s lifespan by factors including symptom type and severity. For example, a substance use disorder may be characterized by misuse or chemical dependency, and mental illness may be experienced by an individual as an acute, intermittent, or chronic illness.
Structural stigma exists in public and private institutions, including businesses, the courts, government at all levels, professional groups, school systems, social service agencies, and universities. Stigma at the structural level can appear to endorse discrimination, which contributes to public and self-stigma. Examples include limits on exercising one’s civil rights, such as serving on a jury or holding a political office, and discriminatory hiring or admissions policies based on stereotypes. People with mental and substance use disorders are overrepresented in the criminal justice system, which is both a consequence and a source of stigma.
Public stigma is operationalized through the behaviors of individuals and groups of all kinds in society. Relevant groups include educators, employers, health care providers, journalists, police, judges, policy makers, and legislators. With their broad reach, the media have a strong influence on stigma at every level. Despite ongoing and successful efforts to educate media professionals about behavioral disorders, stereotypes of violently mentally ill people are perpetuated in media and social media reports of incidents of mass violence and in public discourse about mental illness. Social media can be a source of stigma or a means of promoting affirming and inclusive attitudes.
Self-stigma reduces self-efficacy and can discourage people from disclosing their conditions for fear of being labeled and subjected to discrimination. Label avoidance in turn discourages help- and treatment-seeking on the part of people with mental and substance use disorders and their families. This avoidance creates a barrier to early diagnosis and treatment, adding to the heavy social burden of untreated mental and substance use disorders, including chronic disease; costs related to victimization, crime, and incarceration; lost productivity; and premature death.
EVIDENCE-BASED STRATEGIES TO REDUCE STIGMA
Strategies to address stigma related to mental and substance use disorders include, but are not limited to,
- education, such as mental health literacy campaigns;
- protest and advocacy (e.g., letter writing and Twitter campaigns);
- programs that facilitate social contact between people with and without behavioral disorders (contact-based programs);
- contact-based education programs, which combine contact with educational content designed to raise public awareness of selected issues or increase public knowledge about mental and substance use disorders;
- media campaigns delivered over a range of platforms, including traditional and newer social media; and
- peer programs in which people who have disclosed their conditions offer their experience and expertise to individuals and families, programs that range from informal peer-led programs to peer specialized services in health services systems.
Disclosure of one’s experience with mental or substance use disorders, which is central to both contact-based programs and peer programs of all types, has both risks (being labeled, experiencing discrimination) and benefits (increased likelihood of receiving treatment, decreased self-stigma, increased feelings of inclusion). Ideally, it is done selectively in an informed, supported, and planned manner.
Contact-based interventions alone and contact-based educational programs have the strongest evidence base for reducing stigma. Educational programs alone are not effective for adults but are effective in changing younger people’s attitudes. Communication campaigns can be effective but tend to fail for two reasons: failure to identify well-defined goals and objectives for the campaign and failure to reach the intended audience or audiences in a sustained or adequately frequent manner. Protest and advocacy strategies serve to expand the stakeholder base, garner support, and provide a forum for consensus. Regardless of the type of intervention, anti-stigma strategies have often resulted in both intended and unintended consequences.
CONCLUSIONS AND RECOMMENDATIONS
A National-Level Approach
CONCLUSION: The experiences of the U.S. campaigns related to HIV/AIDS and of anti-stigma campaigns in Australia, Canada, and England demonstrate the need for a coordinated and sustained effort over two or more decades to reduce the stigma associated with mental and substance use disorders.
Norms and beliefs related to behavioral health, such as the stigma associated with mental and substance use disorders, are created and reinforced at multiple levels, including day-to-day contact with affected individuals, organizational policies and practices, community norms and
beliefs, the media, and governmental law and policy. A number of private and public organizations are already engaged in anti-stigma and mental health promotion efforts, but because these efforts are largely uncoordinated and poorly evaluated, they cannot provide an evidence base for future national efforts.
RECOMMENDATION 1: The U.S. Department of Health and Human Services should take the lead responsibility among federal partners and key stakeholders in the design, implementation, and evaluation of a multipronged, evidence-based national strategy to reduce stigma and to support people with mental and substance use disorders.
Relevant stakeholder groups would include the following:
- consumers in treatment for mental and substance use disorders and consumer organizations;
- families and others whose lives are touched by mental illness or substance use disorders, including suicide-attempt survivors and loss survivors;
- relevant private sector leadership, including major employers;
- relevant foundations and nongovernmental organizations;
- advocates and advocacy groups, including civil rights and disability law experts;
- insurance companies and pharmaceutical manufacturers;
- journalists and others in the news media, including public health media experts;
- health and behavioral health care providers and administrators, including protective services and social services providers;
- health professional education institutions and professional associations;
- academic researchers, including suicide prevention experts and researchers;
- law enforcement officials and first responders; and
- representatives of federal, state, and local governments.
Early tasks would include the following:
- Identify a lead organization to serve as convener of stakeholders.
- Promote coordination and engagement across local, state, federal, and nongovernmental groups, including the U.S. Departments of Defense, Health and Human Services, Justice, and Labor, and
relevant stakeholder groups to pool resources and promote evidence-based approaches.
- Evaluate current laws and regulations related to people with mental and substance use disorders to identify opportunities for changes that will support people on the path to recovery.
- Support the development of a strategic plan for research and dissemination of evidence about effective strategies to change social norms related to mental and substance use disorders (see Recommendation 3).
- With the federal agencies and other partners, develop a process of identifying and engaging grassroots efforts in each state to promote the implementation of evidence-based programs and fidelity monitoring of service delivery.
- With the federal agencies, establish a long-term, national monitoring system for stigma and stigma reduction.
Collaboration and Coordination
In 2013, eight federal agencies were identified as having programs to support individuals with mental and substance use disorders—the U.S. Departments of Defense, Education, Health and Human Services, Housing, Justice, Labor, Veterans Affairs, and the Social Security Administration—although their specific mission goals vary. Ongoing and enhanced efforts to coordinate across agencies and programs will improve the effectiveness and extend the reach of these programs. To improve the effectiveness and extend the reach of the federal agencies’ programs, there are some ongoing efforts to coordinate across the agencies and their programs.
To maximize desired outcomes, collaborative efforts should eschew “ownership” of programs and include cobranding and resource sharing. SAMHSA’s ongoing engagement with stakeholders can support the search for common ground, mutually articulated goals, and shared agendas.
The committee has identified structural stigma and stereotypes of dangerousness and unpredictability as major sources of public and self-stigma. Given the importance of reducing stigma in these areas, early efforts could focus on development of a communications campaign or to target policy and decision makers to challenge specific laws, policies, and regulations that discriminate against people with mental and substance use disorders. Such a campaign could develop evidence-based public service announcements to hold in readiness for tragic events, such as mass violence, suicide by school and college students, and suicide clusters.
CONCLUSION: Changing stigma in a lasting way will require coordinated efforts, based on the best possible evidence, which are supported at the national level and planned and implemented by a representative coalition of stakeholders. Engaging a wide range of stakeholders would facilitate consensus building and provide the support needed to overcome major obstacles to the implementation of effective anti-stigma programs in the United States. Barriers and challenges include, but are not limited to, conflict among major stakeholder groups regarding best practices and priorities, resource constraints, and the need to target multiple audiences with variable perceptions and priorities, as well as shifting priorities at the national level.
RECOMMENDATION 2: The U.S. Department of Health and Human Services should evaluate its own service programs and collaborate with other stakeholders, particularly the criminal justice system and government and state agencies, for the purpose of identifying and eliminating policies, practices, and procedures that directly or indirectly discriminate against people with mental and substance use disorders.
Strategic Planning for Research
The committee defines strategic planning as the process undertaken by an agency or organization to define its future and to develop a detailed plan to guide its path from the current state to its vision for the future.
CONCLUSION: A planning process usually results in the development of a key document that includes a plan to ensure that communication is maintained across all stakeholders. This element is especially relevant for the Substance Abuse and Mental Health Services Administration given the agency’s ongoing engagement with many stakeholders and collaborators. A strategic plan can also serve as the basis of comparison for an ongoing plan for iterative effectiveness monitoring.
RECOMMENDATION 3: The Substance Abuse and Mental Health Services Administration should conduct formative and evaluative research as part of a strategically planned effort to reduce stigma.
SAMHSA’s ongoing program of research on social norms and communications practices could coordinate with national efforts to achieve common goals and objectives. SAMHSA’s Office of Communication’s
future activities could also be informed and supported by partners and participating stakeholders.
Because change occurs slowly, outcome evaluations need to be multifaceted and sustained to capture both direct and indirect effects, as well as intended and unintended consequences. An evaluation plan should include and support community-based participatory research that is based on the principle of partnership, in which community partners act as co-learners with academic partners rather than helpers or recipients. This approach involves community stakeholders from the outset to define both the change targets and the intervention strategies, as well as in the conduct of the research itself. To inform a national campaign, more in-depth formative and evaluative research is critically needed in three areas: communication strategies, contact-based programs, and the role of peers.
Communication science provides a basis for understanding the effects of message features, contents, and platforms on four outcomes: cognitive (e.g., attention and memory), affective (e.g., liking, empathy, and fear), persuasive (e.g., attitude and behavior change), and behavioral (e.g., intents and actions). These effects are not discrete. They depend on characteristics of the target audience or audiences, the media platform, the message source, and the specific content and production features used in the message. For example, in a campaign to counter the stereotype of dangerousness in the wake of a tragic event, relevant audiences would include the media, school officials and teachers, young people, parents, and clergy. Messages would target specific smaller groups and would be designed and delivered with input and support of engaged stakeholders, for example, in donated airtime or volunteered time of high-profile supporters and speakers.
CONCLUSION: Best practices in choosing effective messages first require that a communications campaign develop well-defined goals for each specific group targeted. Effective messages can then be tailored to the specific target audience for the defined goals.
Because of the complexity of designing communication messages, efforts to implement the committee’s recommendation on this topic should be informed by the results of formative and evaluative research. Research is necessary both before message concepts are generated and after message concepts are created for testing in the field. The perspectives of people with lived experience of mental and substance use disorders
should inform anti-stigma campaigns at every stage, including design, delivery, and evaluation.
RECOMMENDATION 4: To design stigma-reduction messaging and communication programs, the Substance Abuse and Mental Health Services Administration should investigate and use evidence from formative and evaluative research on effective communication across multiple platforms.
Several general features of effective communication programs have been identified by research and can inform the work in the committee’s recommendations to SAMHSA:
- Identify specific target groups and specific goals appropriate to each group (e.g., legislators and policy makers, employers and landlords, educators, health care practitioners, and people with mental and substance use disorders).
- Make strong appeals that are relevant and personally consequential to particular audiences, for example, young people or veterans.
- Understand how a particular audience orients to a message and what kinds of cues and styles hold their attention so that the message is absorbed and remembered.
- Know what matters most to a specific target group.
Mixed-methods research has led to the identification of key elements of successful contact-based programs. Outcome research on contact demonstrates robust effects in pre-post studies and at follow-up. In adults, the efficacy of contact-based programs is greater than that of education programs alone across a range of specific target audiences, such as health professionals, college students, and police, but evidence shows that onetime contact is not as effective as repeated contact. In contrast, education programs are effective in changing stigmatizing attitudes among adolescents.
CONCLUSION: To expand the reach of contact-based programs, efforts will be needed to develop a nationally representative cohort of individuals who have disclosed information about their experiences of mental or substance use disorders. Involvement of those individuals needs to be preceded by the design of programs to aid personal consideration and action on disclosure decisions and of
peer training programs to help people consider the risks and benefits of disclosure.
RECOMMENDATION 5: To decrease public and self-stigma and promote affirming and inclusive attitudes and behaviors targeted to specific groups, the Substance Abuse and Mental Health Services Administration should work with federal partners to design, evaluate, and disseminate effective, evidence-based, contact-based programming.
The Role of Peers
Peers play an essential role in combating stigma, in part because they model personal recovery. Their role is critical in helping individuals to overcome the debilitating forces of self-stigma. Peer support programs and services include social and emotional support, as well as practical support related to quality-of-life decisions, delivered by people with mental and substance use disorders. Peer support has existed since the 1970s, but in 2001, several states began efforts to certify and train the peer specialist workforce. By 2012, 36 states had established such programs, although there is considerable variation in the certification programs across these states. State programs vary in terms of stage of development and certification requirements, including the content and process of training, examination criteria, and requirements for continuing education and recertification.
Most research on the outcomes of peer services has focused on quality-of-life measures. Few data are available about the costs and benefits of these programs, although the research suggests that people who use peer support services are more likely to use other behavioral health services of all kinds, including professional services and prescription drugs, which may lead to improved outcomes. Although more peers are becoming certified, stakeholders disagree about the risks and benefits of professionalizing the role given grassroots origins of peer support in the consumer movement.
CONCLUSION: In the United States, there is no established and accepted set of national or state competencies or standards for peer specialists, such as those that apply to other health professionals at state levels.
Although stakeholders do not agree on the risks and benefits of certification for peer support providers, it may contribute to the quality and outcomes of peer services and facilitate research on the effectiveness of
these services across a range of outcomes. Programs need to be appropriately targeted to the audience or audiences and implemented at the relevant geographic level. Components of this effort would include standardization of preparation for peer service providers and development of practice guidelines for referral to and delivery of peer services across agencies and organizations. SAMHSA has taken steps in this direction with its 2009 Consumer-Operated Service Evidence-Based Practices Toolkit (Chapter 4) and continues to have an important role to play in the development and dissemination of these products and programs across the nation. The National Federation of Families for Children’s Mental Health offers a national certification for parent support providers that could serve as a model for future efforts to expand the reach of high-quality peer support services.
RECOMMENDATION 6: The Substance Abuse and Mental Health Services Administration should work with partners to design, support, and assess the effectiveness of evidence-based peer programs to support people with mental and substance use disorders along the path to recovery and to encourage their participation in treatment.
Development of a national strategy for eliminating the stigma of mental and substance use disorders is a challenging, long-term goal that will require collaboration across federal agencies, support from governments at all levels, and engagement of a broad range of stakeholders. No single agency can implement an effective national strategy, but SAMHSA brings specific and unique strengths including well-established stakeholder relations, commitment to the recovery model, and a history of promotion and implementation of prevention and early intervention strategies. Early objectives of a national strategy will include consensus building across a range of issues, design of cost-sharing arrangements, development and implementation of a research strategy including a system for monitoring change in public attitudes, and mechanisms for disseminating information to inform future anti-stigma interventions.
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