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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
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1

Introduction

CONTEXT FOR THE STUDY

Across the United States at any given time, there are hundreds if not thousands of projects and programs aimed at reducing negative attitudes, beliefs, and behaviors concerning mental and substance use disorders, yet stigma persists (Pescosolido et al., 2010; Phelan et al., 2000; Schnittker, 2008); and people with these disorders continue to face prejudice and discrimination in many areas of civic life.1 To inform future anti-stigma efforts in the United States, this report describes the changes needed to improve the lives of people with mental and substance use disorders and reviews the current evidence on effective stigma change strategies.

Scholars and scientists have pointed to persistent stigma as a major barrier to the success of mental health reform. Stigma occurs and so needs to be addressed at multiple levels of society including the structural level of institutional practices, laws, and regulations; among both the general public and groups, such as health care providers, employers, and landlords; and as self-stigma, which reflects internalized negative stereotypes.

The language that is used to discuss mental and substance use disorders, and to refer to people with these disorders, is often targeted for change as a strategy for reducing stigma. For example, many stakeholders prefer person-centered language, that is, language that describes a person as having a mental illness rather than as being mentally ill. The term “stigma” itself has been targeted for change by some stakeholder groups,

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1 For more information, see http://www.bazelon.org/ [October 2015].

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

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. We use patient-centered language throughout this report.

“Prejudice” means to prejudge and generally implies prejudgment based on erroneous beliefs or incomplete information. Similarly, stigma against people with mental or substance use disorders can stem from erroneous beliefs about, for example, their dangerousness or the unpredictability of their behavior. Lack of information about the nature of these disorders (e.g., their causes) can lead to public attitudes of shame and blame.

Discrimination is manifested as prejudice in behaviors that endorse differential treatment of people with mental and substance use disorders (Cummings et al., 2013). “Stereotyping” is the prejudicial characterization of an entire group, which blinds us to the differences among the people in that group. People with mental and substance use disorders are not a homogeneous group, and yet they are often referred to as such, for example, in discussions about background checks for firearm purchase.

The Americans with Disabilities Act (ADA) protects people with mental disorders against discrimination in many areas of civic life, and it defines discrimination to include a range of actions, for example, segregation of persons with mental disorders in public arenas, such as nursing homes and employment settings; screening that intends to or does screen out people with mental disorders; and failure to make reasonable accommodations to the known disability of an otherwise qualified individual with a mental illness. In 2003, the President’s New Freedom Commission on Mental Health declared that recovery was possible and identified stigma and the fragmentation of the mental health care system among the major barriers to care. Subsequently, the ADA Amendments Act of 2008 (ADAAA) and other federal-level disability nondiscrimination laws expanded protections under the ADA, for example, by ensuring that a person with mental illness whose condition improved as a result of treatment continued to be protected under the law. Following the President’s Commission and a 2006 SAMHSA Consensus Statement, we use “recovery” in this report to refer to an individually defined and nonlinear journey toward living a purposeful and satisfying life.

In addition to a fragmented mental health care system, the community of stakeholders concerned about mental and substance use disorders reflects a multiplicity of goals, and at times, different competing agendas. Stigma is a complex phenomenon that occurs at the structural level of policies and regulations (such as those covered by the ADA and ADAAA), at the general public level (including prejudicial attitudes and behaviors

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

toward people with mental and substance use disorders), and at the level of self (in which the individual internalizes negative stereotypes).

To inform future anti-stigma efforts in the United States, this report describes the changes needed to improve the lives of people with mental and substance use disorders by reviewing the current evidence base for stigma change strategies at all levels and provides recommendations for future efforts.

BACKGROUND AND COMMITTEE CHARGE

Mental and substance use disorders are prevalent and among the most highly stigmatized health conditions in the United States. Worldwide, mental and substance use disorders are leading causes of morbidity and mortality. The social and disease burden of these disorders increased by 37 percent between 1990 and 2010, primarily due to demographic trends in population growth and aging (Whiteford et al., 2013).

In a national survey in 2014, 14 percent of U.S. adults said they had experienced a mental health problem within the past year; and 4 percent said that they had experienced a serious mental illness, one that met standard diagnostic criteria in the Diagnostic and Statistical Manual of Mental Disorders (Center for Behavioral Health Statistics and Quality, 2015).2 In another survey regarding substance use, 24 million Americans aged 12 and older (9.4% of the population) said they had used illicit drugs in the past month, and 17 million (6.6%) reported alcohol dependence or misuse.3 Of the nearly 23 million Americans who needed treatment (met standard criteria) for a drug or alcohol problem, less than one in ten received any treatment. Untreated substance use disorders reflect an estimated $417 billion in annual costs related to crime, health care services, and lost work productivity.4 This estimate does not capture the many social costs of drug overdose and suicide.

A survey from SAMHSA (2014) provides detailed information on the use of health care services by people with mental disorders. People with a serious mental illness have a higher rate of service use than the general population of people with any mental illness (69% versus 45%) but treatment and services vary in quality and timeliness of delivery. Among adults who reported an unmet need for mental health care in the past year, the most common reasons were inability to afford the cost of care

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2Behavioral Health Trends in the United States: Results from the 2014 National Survey on Drug Use and Health.

3 Data from the National Institute on Drug Abuse. Available: https://www.drugabuse.gov/publications/drugfacts/nationwide-trends [April 2016].

4 See https://www.drugabuse.gov/publications/drugfacts/nationwide-trends [April 2016].

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

(48%), believing that the problem could be handled without treatment (26.5%), not knowing where to go for services (25%), and not having the time to go for care (16%). Smaller proportions reported that they did not seek care because it might cause neighbors or the community to have a negative opinion (10%), they did not feel a need for treatment at the time (10%), they thought that treatment would not help (9%), they had fear of being committed to an institution or having to take medicine (9%), they had concerns about confidentiality and the potential negative effect on employment (8%), they did not want others to find out (6%), and they had no insurance coverage or inadequate coverage of mental health treatment (6% to 9%).

Mental illness and a history of substance misuse remain barriers to full participation in society in areas as basic as education, housing, and employment (Whitley and Henwood, 2014) and to fundamental rights of self-determination, such as access to the courts (Bazelon Center for Mental Health Law, 2014; Davis, 2010) and redress of grievances (Callard et al., 2012).

In the past, mental illness was considered a private matter rather than a public concern and a moral failing rather than a disease (Arboleda-Flórez and Stuart, 2012). Although stigma adheres to both mental illness and substance misuse, the degree of negative valuation varies across these disorders. In general, substance misuse is more highly stigmatized than mental illnesses and we have less evidence about what works to reduce it (Livingston et al., 2012). The public tends to hold people with addictions more responsible for their condition than they do people with a mental illness (Schomerus et al., 2011) and to report harsher reactions and greater unwillingness to socially include those with substance use disorders (Martin et al., 2000; McGinty et al., 2015).

Public attitudes about mental illness began to shift in the 1970s when media attention grew as a result of several factors including the availability of better treatments, a focus on the problem of “warehousing” people with mental illness in state institutions, and increased messaging to the public about mental illness and treatment. Deinstitutionalization policies brought people with mental illness out of state hospitals and into the public sphere, and the community, mental health movement arose with participation from former patients, their families, and treatment providers. Part of the overall deinstitutionalization plan had been to provide services at the local level, but community mental health services were underdeveloped and underfunded as the savings from closed hospitals was often redirected to cover state budget shortfalls (Grob, 1991). When the former residents of large, state-funded institutions returned to their communities, they often experienced poverty, homelessness, and discrimination. Mental health organizations launched public education

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

campaigns to raise awareness about this crisis. With the increase in media coverage, people began to read about mental illness and the unmet needs of people with these disorders in the then-new health and science sections of their newspapers (Borinstein, 1992).

In 1950, the first major national study of public stigma was launched followed by three congressionally mandated studies in 1955, 1956, and 1976 (Pescosolido et al., 2000). These studies documented an extreme lack of public knowledge about the nature and causes of mental illness and a deep unwillingness to discuss mental illness. In 1989, the Robert Wood Johnson Foundation sponsored the first major study of Americans’ attitudes toward mental health and illness. A review of public surveys since 1990 concluded that, although attitudes about mental illness have evolved, and there are marked differences across mental disorders, little is known about the relationship between attitudes and actual behaviors toward people with mental and substance use disorders (Angermeyer and Dietrich, 2006).

Combining data from these early studies with data from 1996, 2002, and 2006, researchers compared responses to analogous mental health and substance misuse modules in the General Social Survey. They found that public perceptions about the dangerousness and unpredictability of people with mental and substance use disorders have not decreased significantly over time. In fact, when asked to describe mental illness in 1996, a significantly larger proportion of the U.S. public spontaneously included a mention of violence than had done so in earlier surveys; and between 1991 and 2006, beliefs about the underlying cause of alcohol abuse shifted in the direction of moral blame (Pescosolido et al., 2010; Phelan et al., 2000; Schnittker, 2008).

Despite extensive research on stigma and general agreement that stigma is persistent, harmful, and discriminatory, the evidence about what works to change negative behavioral health social norms is sometimes conflicting and not uniformly robust (Livingston et al., 2012; Pescosolido, 2013; Stuart and Sartorius, 2005). There is less research on the subject of stigma against people with substance use disorders, but it is known that addiction stigma differs enough from mental illness stigma that lessons cannot always be transferred from one to the other (McGinty et al., 2015).

It is in this context that the Center for Behavioral Health Statistics and Quality at SAMHSA of the U.S. Department of Health and Human Services requested that the National Research Council and Institute of Medicine undertake a study of what is known about negative social norms and how to change them. In this report, the term “social norms” refers to a range of shared attitudes, beliefs, and behaviors directed toward people with mental and substance use disorders. Social norms are guides for behavior. Some norms are formalized as laws, such as those that prohibit

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

issuance of a driver’s license in some states to someone in a state psychiatric hospital, but many are informally understood and enforced through public sanctions, such as exclusion or reprimand. Erving Goffman’s influential 1963 essay on stigma defines that term as a deeply discrediting attitude that reduces the bearer “from a whole and usual person to a tainted, discounted one” (Goffman, 1963). The next section provides an overview of stigma as it relates to mental illness and substance misuse. The full statement of task is in Box 1-1. This report focuses on the nature and dynamics of stigma and what the evidence shows about what has worked to change negative norms concerning mental and substance use disorders.

In addition to expertise in content areas, such as communications science and behavioral health, the committee included individuals with current experience or a history of mental or substance use disorders as individuals, family members, partners, caregivers, friends, and health care providers with experience of treating people with these disorders. Individuals with such knowledge and experience were sought and included through a nominations process that encouraged study sponsors and a wide range of other individuals and organizations to offer suggestions for committee membership. Once established, the committee also sought and included individuals with direct knowledge and experience of mental

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

and substance use disorders to participate in two public workshops that provided input to the committee, which contributed to the development of the report: see the workshop agendas in Appendix A.

OVERVIEW

Stigma can be defined as relationship between an attribute and a stereotype that assigns undesirable labels, qualities, and behaviors to a person. Labeled individuals are devalued socially, leading to inequality and discrimination (Link and Phelan, 2001). For example, when a person with schizophrenia (an attribute) is assumed to be violent (a stereotype), she or he will be considered dangerous (an undesirable label). This occurs despite data documenting that people with schizophrenia are more likely to be victims than perpetrators of violence (Teplin et al., 2005). There is debate at times about whether stigma actually arises from the label or from non-normative behavior on the part of the individual, but findings from public surveys in the United States indicate that, controlling for behavior, the label itself is stigmatizing (Pescosolido, 2013).

Discrimination against people with mental and substance use disorders deprives many individuals of opportunities in areas including education, housing, and competitive employment. Because the age of onset for some mental illnesses, including schizophrenia and bipolar disorder, is often the late teens and early twenties, stigma produces early life inequities at key transitional points of personal development and civic life (McLeod and Kaiser, 2004).

The literature on stigma characterizes three major interrelated types: structural, public, and self-stigma, along with courtesy stigma (directed toward family and friends of those with a mental or substance use disorder) and label avoidance. People avoid being labeled with a behavioral health problem because of concerns about resulting discrimination or social rejection, and although this certainly occurs, self-disclosure of mental or substance abuse disorders can also have positive outcomes related to help-seeking and feelings of inclusion. Label avoidance also negatively influences the decision to seek help for one’s self or others (Corrigan, 2015).

For structural stigma, the committee adopted the definition put forward by Hatzenbuehler and Link (2014, p. 2): “societal-level conditions, cultural norms, and institutional practices that constrain the opportunities, resources, and wellbeing for stigmatized populations.”

Public stigma describes negative attitudes, beliefs, and behaviors held within a community or the larger cultural context that are referred to collectively in this report as negative social norms. There may be intersecting stigmas, for example, of race or poverty and mental illness that increase

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

the likelihood that a person will experience discrimination and injustice. Public stigma can predispose individuals in a community or other social group to fear, reject, avoid, and discriminate against people with mental illness (Parcesepe and Cabassa, 2013).

Self-stigma refers to the internalization of public stigma by a person with a mental or substance use disorder (Corrigan et al., 2014). This internalization can lead to denial of symptoms and rejection of treatment and contribute to the isolation of people with mental and substance use disorders from valuable social supports. Self-stigma does not emerge from lack of insight or intentional reaffirmation of negative social norms. It often arises as a result of previous experiences of discrimination or rejection. Self-stigma, like low self-efficacy, is a barrier along the path of recovery for people with mental and substance use disorders.

These discrete terms for the major levels and types of stigma reflect how the phenomenon has been defined by stakeholders, including researchers. Although there may be considerable overlap across the three types, the overall concept of stigma as a multilevel, multidimensional phenomenon facilitates research, measurement, and monitoring and can help to identify appropriate targets for change at each level. Researchers point to the presence of a “stigma complex,” a system of interrelated, heterogeneous parts that operate in a dynamic process (Pescosolido, 2015).

Because stigma is fundamentally embedded and enacted in social relationships, as noted in the original classic treatise on stigma (Goffman, 1963), the phenomenon occurs at the intersection of individual and community factors. Initially, individual factors define the nature and extent of the “mark,” which determines the probability of a label being given. This elicits the stigmatization process; however, cultural differences and the nature of the community shape the environment in which “difference” is defined, evaluated, and handled. For example, clear cross-national differences in mental illness stigma have been documented through analyses of newspapers across various countries (Olafsdottir and Beckfield, 2011) and related evidence linking prevalent public attitudes and the experiences of people with mental illness (Evans-Lacko et al., 2012a; Mojtabai, 2010).

Weaker stigmatizing responses are elicited when the stigmatized and the stigmatizer are more equal in social status and social power. As the power levels become more disparate, with the potential stigmatizer being more powerful, a stronger stigmatizing response will be elicited. For example, a strong stigmatizing response may include assigning a high level of severity to the condition, and thus the stigmatized individual will be subject to greater prejudice and discrimination. For example, in the context of health care, there can be a significant perceived or actual power differential between the provider and the patient. Stigma occurs in the health care system at both public and structural levels, that is, among

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

health care provider groups and from the institution itself. This creates a feedback loop that engenders negative norms and increases self-stigma, which can negatively impact outcomes over the life course of stigmatized individuals (Gardner et al., 2011).

Effective stigma change initiatives attend to all relevant dimensions of the stigma complex, regardless of the specific level that is the target of the campaign. Both planned and unplanned impacts of campaign need to be considered in light of potential latent or unintended effects, for example, the potential negative effects of disclosing the experience of mental illness in a highly stigmatizing context. Conversely, there is evidence that addressing multiple levels of stigma within a campaign can create what Evans-Lacko calls a “virtuous cycle” to replace the harmful feedback loop among structural and public stigma and self-stigma (2012a).

BEHAVIORAL HEALTH IN THE U.S. CONTEXT

Throughout human history, conditions with no known cause or cure have been heavily freighted by stigma. As a dynamic, culture-bound phenomenon, stigma’s severity and its impact on stigmatized individuals vary across time, place, and culture. There are many examples of stigmatizing conditions including cleft palate, epilepsy, HIV/AIDS, tuberculosis, and cancer, as well as mental and substance use disorders. Once causes and cures are developed, stigmas are often lessened (Grob, 1991).

At present, the lack of consensus in the United States about the origin, definition, and diagnosis of mental illnesses (Adam, 2013) may contribute to the maintenance of stigma. This is reflected by communities of stakeholders, which are divided across several domains. Although it is beyond the scope of this report to describe the perspectives and debates among the stakeholders, some current controversies that may impede efforts to combine and leverage resources to reduce stigma are briefly described in this section.

Different Diagnostics: DSM and RDoCs

The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) places mental disorders in discrete categories on the basis of clinical signs and symptoms. These categories were established through the consensus of experts, and most recently updated amid controversy in 2013 (Frances and Widiger, 2012). Other experts in the field prefer to move away from discrete categories toward the concept of dimensionality in which mental illnesses overlap, and to base the diagnostic system for mental illness on research data rather than symptom-based categories (Cuthbert, 2014).

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

Other recent changes include new emphasis on the importance of strengths-based approaches to assessment and treatment of mental disorders, which has been championed by consumer and advocacy groups (Xie, 2013), and increased attention to the role of childhood trauma and exposure to historical and cultural violence, through trauma-informed care and the use of screening tools including the Adverse Childhood Experience Scale. Other new approaches to psychiatric assessment include social and environmental factors that influence the development and trajectory of mental and substance use disorders (see, e.g., Chisolm and Lyketsos, 2012).

To address these concerns, in 2010, the National Institutes of Mental Health (NIMH) launched the Research Domain Criteria (RDoC) project. RDoC supports research that is focused on dimensional variables, such as motivation and reward, or brain circuits that are dysregulated in many mental illnesses (Adam, 2013). But there have also been criticisms of the RDoC project. One is that it is a type of scientific reductionism, which was successful in understanding and developing treatments for physical illnesses, but may not adequately address the heterogeneous nature of psychopathology or the complexities of human consciousness and subjective experience that underlie mental and substance use disorders (Parnas, 2014). Taking the two approaches together, DSM-5 provides a clinical tool for diagnosis of mental illness, and a set of reimbursable categories for payment and coverage, whereas the NIMH-supported brain research community will shed light on the neurobiological underpinnings of psychopathology to inform future editions of DSM (Adam, 2013; Maj, 2014).

Different Agendas: Rights and Services

There are two quite different perspectives concerning the best or most useful approach to helping people with mental illness or substance use disorders—one of services and one of rights. A services agenda has the goal of increasing access to and quality of health care services by people with mental and substance use disorders; a rights agenda applies a social justice approach to eliminate discrimination and promote equality and full civil rights (Corrigan, 2015). The rights agenda is grassroots in nature and has the support of many people with firsthand experience of stigma and discrimination. Consumer and advocacy groups have stressed the importance of self-efficacy (empowerment) and access to opportunities for personal and social advancement in recovery. As noted above, stigma can negatively impact self-efficacy, help-seeking, and social inclusion (Ostrow and Adams, 2012).

Services agendas are underpinned by research showing that a significant proportion of people with mental illness do not seek treatment (Wang

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

et al., 2002). This is due, in part, to public and structural stigma (Clement et al., 2015) as well as self-stigma, and label avoidance (Corrigan, 2015). A concern on the part of some behavioral health experts is that services agendas and mental health services researchers do not focus on people who are not seeking treatment and that this is a population in need of research attention. Understanding how these agendas both align and compete with each other is a critical step in setting national goals for stigma reduction.

Different Models: Medical and Recovery

Many health care professionals continue to be skeptical about the possibility of recovery from some mental and substance use disorders despite evidence to the contrary (Harding et al., 1987a, 1987b). Although treatment is thought to be beneficial on the whole, in one survey, one-half of the respondents who were health professionals did not endorse recovery as an outcome for serious mental illness (Magliano et al., 2004). This view derives at least in part from a biomedical model of mental illness, which looks for causes of psychiatric symptoms in the neurobiology and neurophysiology of the brain. Health professionals’ skepticism about the possibility of recovery as “cure” has been shown to increase public stigma (Henderson et al., 2014; Schomerus et al., 2012) and to contribute to negative public attitudes about the potential for recovery (Henderson et al., 2014). The analogous brain disease model of addiction also has both critics and supporters. The hope of the research community is that efforts to understand the neurobiological underpinnings of addiction may contribute to the development of effective treatment and prevention strategies (Volkow and Koob, 2015).

Although the concept of recovery from mental illness has a long history, the modern mental health recovery movement in the United States has its roots in the Civil Rights era of the 1960s and the consumer movements of the 1980s and 1990s, including the consumer, survivor, and ex-patient movements, which gained early support from SAMHSA. Underpinning these efforts was the evidence from research conducted by Harding and colleagues on recovery from mental illness (Harding et al., 1987a, 1987b). These efforts along with the deinstitutionalization policies of the 1970s also spurred the development of peer-services movements of the 1980s and 1990s (Anthony, 2000). More recently, the 1999 Surgeon General’s Report and the 2003 President’s New Freedom Commission on Mental Health encouraged a national paradigm shift toward the mental health recovery model.

Recovery in the context of substance use disorders has roots in the Anonymous movement, beginning, for example, with Alcoholics Anony-

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

mous (AA), which began in the 1930s, and Narcotics Anonymous (NA), which was joined with AA but later established as separate organization. The concept of recovery regarding substance use disorders overlaps but also differs from that of mental illness, notably in the degree to which recovery is thought to include responsibility to society and peers. For AA and NA members, giving back to the community as peers is the 12th and last step to recovery. Although these various peer and consumer movements may vary in terms of priorities and goals, they largely agree on the importance of empowerment and equality for people with or labeled with mental and substance use disorders (Ostrow and Adams, 2012).

THE BROADER U.S. CONTEXT

The Health Care System

Although stigma may contribute to the low quality of mental illness and addiction services in the United States (Schulze, 2007; Schulze and Angermeyer, 2003), several features of the nation’s health care system also contribute to the current situation. They include the fragmented bureaucracy for accessing behavioral health care (Garfield, 2011); overuse of coercive approaches to care; rejection of facilities by communities; and lower funding for research in the areas of behavioral health treatment and services than for neuroscience and physical health treatment and services (Heflinger and Hinshaw, 2010; Schomerus and Angermeyer, 2008; Schulze, 2007; Schulze and Angermeyer, 2003).

Most behavioral health services in the United States are financed through public sources. For mental health services, Medicaid programs are the principle payers. Treatment for alcohol and drug use disorders is funded largely by state and local non-Medicaid sources. Care utilization types and rates vary widely by age, sex, insurance status, and severity of illness. For example, children are most likely to receive behavioral health care from specialty providers or the education system. Among adults, women are more likely to obtain services from the general medical sector, while men are more likely to obtain services from specialty providers. The complexity of behavioral health care funding and service delivery systems challenges policy makers’ efforts to implement and evaluate programs as part of health care reform (Garfield, 2011).

Current efforts toward the integration of behavioral health and primary (and other physical) care in the nation’s health care system offer possibilities for breaking down the walls that separate physical health from mental health both in treatment and in the educational preparation of health care professionals (Mechanic et al., 2013). One bias against people with mental illness in the health care system is a form of stigma-

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

tization that results in misattribution of physical symptoms of illness to concurrent mental disorders (Pescosolido et al., 2008a; Sartorius et al., 2010; Thornicroft et al., 2007). In addition, primary care practitioners are less likely to refer patients with mental illnesses to appropriate physical health services, such as mammography, cardiovascular procedures, and pain management (Corrigan and Kleinlein, 2005; Druss et al., 2000). Access to lifesaving medical technologies, such as cardiac catheterization and revascularization procedures, is also less likely for people with mental disorders due to socioeconomic factors, lack of insurance, geographic remoteness from tertiary medical centers, and cognitive impairment that complicates informed consent and effective provision of aftercare (Druss et al., 2000). People with serious mental illness die at younger ages than the general population. Research that analyzed data from the public mental health system across the United States showed that, in comparison with the general population, individuals in this population lose decades of potential life that vary by state and year from 13 to 30 years (Colton and Manderscheid, 2006).

Social Justice and Inequality

Mental Illness and Incarceration

In the United States, the mental health system and the criminal justice system are unfortunately closely linked. More than one-half of all inmates in the United States have a mental health problem (James and Glaze, 2006). Mental illness, drug addiction, neighborhood poverty, and school dropouts are factors that increase the risk of involvement with the criminal justice system. Blacks and Hispanics are disproportionately affected by disparities in the system, from arrest through parole release, which have a substantial cumulative effect on their rates of incarceration (National Research Council, 2014a). As a result in part of mandatory drug sentencing, women have had the fastest growing incarceration rate in the United States since the 1970s (The Sentencing Project, 2012),5 and women are more likely than men to enter prison with an existing mental illness (James and Glaze, 2006). Socioeconomic disadvantage subsequently hampers the successful reentry in society of released offenders and increases the risk of reincarceration. Prisons also lack resources for the diagnosis and treatment of inmates with existing mental health conditions, and prison conditions, most notably overcrowding and solitary confinement,

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5 Women are more likely to be in prison for drug and property offenses, whereas men are more likely to be in prison for violent offenses.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

can contribute to the development of mental illness in people who previously did not have them. (National Research Council, 2014a).

Young People and the Criminal Justice System

Young people are at particular risk for involvement with the criminal justice system. Adolescent behavior is driven by age-related developmental risk factors that bring them to the attention of the justice system, such as novelty-seeking and interest in experimentation, sensitivity to external influences (peer pressure), and lack of capacity for self-regulation. “Get-tough” policies of previous decades criminalized millions of young people for illegal behaviors that most would have abandoned as they developed cognitively and matured socially. Policies that lowered the maximum age of juvenile court assignment and excluded certain violent crimes from juvenile jurisdiction placed young people in the adult courts.

Improvements in various states and jurisdictions have been implemented in recent years, including raising the age at which juvenile court jurisdiction ends, but reform of the justice system will also require a developmental approach to juvenile justice based on evidence concerning adolescent growth and development and effective age-relevant interventions (National Research Council, 2014b). At the present time, the criminal justice system does not consistently provide young people with the social conditions they need to develop into emotionally self-regulated, healthy, and productive adults (National Research Council, 2014a). This places youths at risk for developing mental and substance use disorders, even when they do not have these disorders at the time of arrest and incarceration, and negatively influences the life trajectories of incarcerated youths, especially among racial and ethnic minority groups (National Research Council, 2014a).

Structural Discrimination

Legislation concerning people with mental illness tends to use broad, homogeneous inclusion criteria (people with any diagnosis of mental illness) rather than more specific and objective measures of cognitive or functional impairment or reduced capacity (Corrigan et al., 2005b). Arbitrariness is a defining feature of structural stigma, reflecting the stereotype that all people with mental illness are dangerous or inadequate in some way, and therefore “deserve” restricted liberties and reduced opportunities. In fact, people with mental and substance use disorders are not a discrete, static, or homogeneous group. There is considerable variability across behavioral health conditions; among individuals in the

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
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severity, symptomatology, and expression of these conditions; and across the lifespan of each person with a mental or substance use disorder.

Lack of parity for mental health coverage was among the most significant forms of structural discrimination in the United States that ended with the passage of the Mental Health Parity and Addiction Equity Act in 2008 after a multidecade fight. Paired with the Affordable Care Act, which prevents insurance companies from denying coverage to people with preexisting conditions, including schizophrenia, depression, bipolar disorder, and drug or alcohol disorders, and allows people to remain on their parent’s health plans until the age of 26, these legislative changes represent major steps forward in advancing the rights of people with mental and substance use disorders.

Unfortunately, other forms of structural discrimination persist despite protections offered by the ADA and the ADAAA of 2008, which expanded protections for people with mental illness, along with the Fair Housing Act (Bazelon Center for Mental Health Law, 2014; Stuart, 2006). Inadequate enforcement of legislation may be a factor in the poorer outcomes observed for people with mental illness across legal, educational, employment, housing, and health care spheres.

THE COMMITTEE’S WORK AND THE REPORT

Input from the Field

In addition to analysis of the peer-reviewed literature, the committee held two public workshops to obtain input from a wide variety of stakeholders in the many domains reflected in its statement of task (see Box 1-1 above). The first workshop was designed to identify lessons learned from efforts to change negative social norms in health-related areas outside of behavioral health. The second workshop was designed to focus on the application of these lessons to mental health and substance use disorder issues in the United States. At the workshops, experts offered perspectives on anti-stigma efforts related to epilepsy, tobacco use, HIV/AIDS, and lung cancer, in addition to mental and substance use disorders.

Principles Guiding the Study

The committee operationalized its task to focus on the current understanding of stigma and its effect on the lives of people with mental and substance use disorders and their families and friends, evidence concerning the success and failure of both domestic efforts to reduce stigma and similar efforts in other countries, and the research needed to inform and evaluate future efforts in the United States. More specifically, to develop

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

the report and its recommendations, the committee focused on four basic questions:

  1. What works to reduce stigma against people with mental illness and substance use disorders?
  2. For whom (for which target groups) does it work?
  3. Under which circumstances does it work? Or, what characterizes successful efforts?
  4. How does one know it worked? What is the evidence?

In the conduct of this study, the committee held both closed and open sessions, as well as the two workshops, and commissioned eight background papers to address a wide range of research questions. Discussions in the open sessions and during the workshops were intended to be inclusive of a broad range of viewpoints, and the committee heard divergent opinions on many topics, including the connotation of several relevant terms, especially the term stigma. Some people expressed concern that the use of the word stigma may itself have a stigmatizing effect, or that it underemphasizes the unequal treatment and discrimination faced by people with mental illness that is referred to in this report as structural stigma, but there is no consensus among stakeholders on the deleterious influence of the term stigma (Corrigan, 2014; Corrigan and Ben Zeev, 2012). In this report, the word stigma is used to refer to a range of negative attitudes, beliefs, and behaviors about mental illness and substance use disorders. A more specific term, such as negative beliefs, is used to express a particular concept, for example, disbelief in the efficacy of medications in treating mental illnesses, or in the possibility of recovery.

Structure of the Report

Chapter 2 provides a summary of current understanding of attitudes, beliefs, and behavioral dispositions toward people with mental and substance use disorders and identifies the major gaps in the scientific knowledge base on stigma.

Chapter 3 describes a communications science framework that should form the basis of a stigma change campaign. The chapter describes effective means for reaching target audiences, choosing message sources and media for delivery, and designing messages that achieve the goals and objectives of a campaign.

Chapter 4 presents the evidence on the effectiveness of stigma change strategies, including legislative and policy interventions, education, interventions that promote positive social contact between people with and without behavioral disorders (contact-based programs), advocacy, and

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×

protest. The committee summarizes the findings from three national-level stigma change campaigns from Australia, Canada, and England that represent a relevant evidence base.

Chapter 5 outlines a research strategy for planning, implementation, and evaluation of stigma change campaigns, including a discussion of measurement of stigma-related constructs, research and design considerations, and cost-benefit analyses. The committee suggests areas of research and research questions for future inquiry into the nature of stigma and stigma change.

Chapter 6 applies lessons learned from previous stigma change efforts in the context of U.S. health care, social, and legal systems. The chapter provides the committee’s conclusions and recommendations concerning communications science; peer services, and other contact-based programs; public and structural anti-stigma campaigns; and the components of an effective national-level strategy to eliminate prejudice and discrimination against people with mental and substance use disorders.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
×
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington, DC: The National Academies Press. doi: 10.17226/23442.
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Estimates indicate that as many as 1 in 4 Americans will experience a mental health problem or will misuse alcohol or drugs in their lifetimes. These disorders are among the most highly stigmatized health conditions in the United States, and they remain barriers to full participation in society in areas as basic as education, housing, and employment. Improving the lives of people with mental health and substance abuse 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 America's efforts to improve behavioral healthcare. 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.

However 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 a complex social phenomenon based on a relationship between an attribute and a stereotype that assigns undesirable labels, qualities, and behaviors to a person with that attribute. Labeled individuals are then socially devalued, which leads to inequality and discrimination. This report contributes to national efforts to understand and change attitudes, beliefs and behaviors that can lead to stigma and discrimination. Changing stigma in a lasting way will require coordinated efforts, which are based on the best possible evidence, supported at the national level with multiyear funding, and planned and implemented by an effective coalition of representative stakeholders.

Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change explores stigma and discrimination faced by individuals with mental or substance use disorders and recommends effective strategies for reducing stigma and encouraging people to seek treatment and other supportive services. It offers a set of conclusions and recommendations about successful stigma change strategies and the research needed to inform and evaluate these efforts in the United States.

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