Experiences of Other Countries
The experiences of Australia, Canada, and England (see Chapter 4) strongly indicate that changing negative social norms that stigmatize people with mental and substance use disorders will require a coordinated and sustained effort. Behavioral health-related norms and beliefs are created and reinforced at multiple levels, including day-to-day contact with people affected by mental and substance use disorders, organizational policies and practices, community norms and beliefs, the media, and governmental law and policy. Successful national-scale anti-stigma programs in other countries shared the following characteristics:
- They were supported by government at the national level.
- Support was committed on a long-term basis, often over decades.
- There was ongoing evaluation and monitoring from the planning phase forward.
- The initiative was multipronged to address the full range of relevant needs.
- Programs and services were coordinated across states (provinces) and across economic and social sectors to reduce fragmentation of efforts.
- Information was collected and disseminated about what worked, with whom, and under which conditions in order to inform the ongoing program development as well as future programs.
The Ryan White Act
In the United States, the Ryan White Care Act (RWCA) provides an example of a coordinated and sustained effort to meet the full spectrum of needs in people with HIV/AIDS. The act was initially passed by Congress in 1990 and has since been reauthorized four times in 1996, 2000, 2006, and 2009. The act supports programs and services at the community, municipal, and state level across the nation. Over the past 25 years, the Ryan White Program has become a critical component of the HIV/AIDS health care system in the United States, serving more than one-half million people (Crowley and Kates, 2013). The history, evolution, and outcomes of the program provide relevant information for future behavioral health anti-stigma initiatives.
The Ryan White Program has evolved to embrace a focus on treatment as prevention, which is consistent with the goals of the Affordable Care Act and the U.S. National HIV/AIDS Strategy. Ongoing evaluation and outcomes research provide future direction for the program, most recently in the areas of health workforce development, insurance coverage, and efforts to scale up programs to achieve population-level impacts (Crowley and Garner, 2015).
The Ryan White Program funds social support-related services in addition to traditional health care and prescription drug programs, including transportation and housing assistance, nutrition services, day care, and dental care (Taylor, 2010). Such “wrap-around” services are provided within the context of an integrated model of care to improve quality of life for people living with HIV/AIDS who face many of the stigma-related barriers as individuals with mental and substance use disorders (Garfield, 2011). Funding is awarded through statutorily established formula grants and through competitive mechanisms with the bulk of funds distributed noncompetitively in response to evolving needs.
One critique of RWCA is that the act did not establish minimum standards for care and services delivery across all states. For example, the act funded AIDS Drug Assistance Programs that were managed by individual states with the states deciding how to allocate funding and set eligibility for enrollment. At the program’s peak height in September 2011, more than 9,000 people with HIV were on state medication waiting lists. Although state and local autonomy regarding implementation and delivery is essential, lessons learned from the AIDS Drug Assistance Programs underscore the need for unifying program standards and illustrate the
important role of the federal government in a national strategy to reduce stigma related to mental and substance use disorders.
An Ecological Framework
Research on stigma toward mental and substance use disorders is challenging and complex in part because it necessarily involves a wide range of independent service systems, numerous sectors and professions, competing agendas, nuanced ethical and cultural issues, and multiple levels of outcome analysis ranging from the individual level to national statistics. Coordinating research across these many layers and systems will require a strategic and harmonious effort on the part of the federal government, private foundations, and academic and health care institutions, and other stakeholders. A coordinated research effort should be finely tuned to the societal and cultural contexts that intentionally or unintentionally endorse or facilitate stigma at various levels, especially the structural level. One assumption of an ecological perspective is that society’s tolerance for or endorsement of a negative norm sets a precedent for stigma at the individual, family, and community levels (Institute of Medicine and National Research Council, 2014). This underscores the need to focus more attention on eliminating structural stigma (see Recommendation 2).
Understanding the processes by which factors at the individual, family, community, and social levels interact to produce and maintain stigma will require multidisciplinary, multimethod, and multisector approaches. Research will need to leverage and build on the existing knowledge base related to mental and substance use disorders, stigma change, and other relevant and related fields. Finally, effective research needs to consider the cultural processes, social stratification, ecological variations, and immigrant/acculturation status that are pertinent to understanding the causes and consequences mental and substance disorder stigma (Institute of Medicine and National Research Council, 2014. These sociocultural factors are critical elements to consider in developing and testing intervention strategies and in adapting evidence-based practices to unique populations and target audiences to ensure cultural relevance, reach, efficacy, and adoption (Barrera et al., 2013).
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 2 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 persons with mental and substance use disorders to identify opportunities to promote changes to 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. 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 (U.S. Government Accountability Office, 2014).
To maximize desired outcomes, collaborative efforts should eschew “ownership” of programs and include cobranding and resource sharing. The Substance Abuse and Mental Health Services Administration (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 that
targeted 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 formulate 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 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 and recipients. This approach involves community stakeholders in helping 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 (Corrigan et al., 2013, 2014). Outcome research on contact demonstrates robust effects in pre-post studies (Corrigan et al., 2012; Griffiths et al., 2014) and at follow-up (Corrigan et al., 2015a). Although the efficacy of contact-based programs is greater than that of education programs alone in adults across a range of specific target audiences, such as health professionals, college students, and police, evidence shows that one-time contact is not as effective as repeated contact. 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 combatting 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 (Ostrow and Adams, 2012). 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 (Kaufman et al., 2012).
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 (Landers and Zhou, 2014). 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 (Ostrow and Adams, 2012).
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 engaged in this work. 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 will include consensus building across a range of issues, design of cost-sharing arrangements, and development and implementation of a research strategy, including a system for monitoring change public attitudes, and mechanisms for disseminating information to inform future anti-stigma interventions.