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Public Mental Health$

William W. Eaton and M. Daniele Fallin

Print publication date: 2019

Print ISBN-13: 9780190916602

Published to Oxford Scholarship Online: June 2019

DOI: 10.1093/oso/9780190916602.001.0001

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Pathways to Care

Pathways to Care

Need, Attitudes, Barriers

Chapter:
(p.439) 16 Pathways to Care
Source:
Public Mental Health
Author(s):

Ramin Mojtabai

Sarah Murray

William W. Eaton

Publisher:
Oxford University Press
DOI:10.1093/oso/9780190916602.003.0017

Abstract and Keywords

This chapter discusses the gap between the need for mental health care and the actual receipt of such care, and the barriers that contribute to this gap. These barriers include attitudes such as stigma, negative attitudes about the benefits of mental health treatments, and lack of perceived need for care. Another set of barriers is related to the structure of services such as scarcity of providers, geographical distance, and inadequate health insurance coverage of mental health services. The chapter describes theoretical models used to understand the process of treatment-seeking and examples of initiatives that have been used to overcome barriers to care. Among these initiatives, public campaigns aimed at increasing awareness and recognition of mental disorders and at reducing stigma, and legislative initiatives aimed at increasing insurance coverage for mental health care have received public attention. Future initiatives to improve access to services and reduce the treatment gap would benefit from a better understanding of the process of treatment-seeking and barriers to mental health treatment.

Keywords:   treatment gap, treatment seeking, unmet need for care, attitude, stigma, health insurance, treatment-seeking model

Why Study Treatment-Seeking Behavior?

Public concern about the high prevalence of untreated mental disorders in the United States was raised to significant levels, perhaps for the first time, in the 1950s, with the publication of the Midtown Manhattan study (Srole & Fischer, 1975). The study found that as many as 25% of the population experienced marked or severe impairment due to mental illness and that over 50% suffered from moderate to mild mental problems. These unanticipated findings (p.440) suggested a great level of need for mental health care. An even more alarming study finding was the low rates of treatment among individuals with the most significant impairments. Just over one-fourth (26.7%) of those experiencing marked or severe mental impairments had been treated at any point in their lives (Srole & Fischer, 1975).

Since that study over five decades ago, much has transpired in the mental health field in the United States—in science, program development, and policy. The capacity of the mental health care system has dramatically expanded, especially with regard to the size, training, and scope of the workforce. The number of psychiatrists in the United States increased markedly, from around 5,500 in 1950 (Joint Commission on Mental Illness and Health, 1961) to just over 41,000 by 2002 (Duffy et al., 2004), though population-adjusted estimates in the recent period (2003–2013) suggest a decline while the number of all practicing physicians per 100,000 population served has increased (Bishop et al., 2016). In addition, hundreds of thousands of psychologists, social workers, and counselors have joined the mental health clinical workforce since the 1950s.

Even more dramatic than the growth in the number of mental health professionals has been the rising numbers of individuals who seek mental health care not from specialists but from clinicians in the general medical sector. The 2001–2003 National Comorbidity Survey Replication (NCS-R) study reported that individuals with common mental disorders sought treatment from general medical providers (including primary care doctors and other nonpsychiatrist physicians) at a slightly greater rate than from mental health care providers (23% vs. 22%) (Wang, Lane, et al., 2005). This reliance on care from the general medical sector not only adds to the ranks of professionals who provide mental health care but also suggests an ongoing shift in the nature of mental health care itself. General medical providers are more likely than specialty sector mental health providers to rely predominantly on medications rather than on psychodynamic or behavioral treatments, a trend buttressed by the explosion of knowledge about the impact of brain chemistry on behavior and mental illnesses.

The growth of knowledge in the decades since the Midtown Manhattan study has led to important innovations in the technology (including new medications) for treatment of mental disorders. While the introduction of new short-term and behavior-oriented psychotherapies has provided increasingly efficient tools to meet individual treatment needs of patients in outpatient settings, the role of medications has become increasingly critical, particularly for people with the most serious mental disorders. The introduction of chlorpromazine, the first antipsychotic medication, not only dramatically changed care for individuals with schizophrenia but also is widely credited for the deinstitutionalization of people with the most severe mental illnesses (Joint Commission on Mental Illness and Health, 1961). Tricyclic antidepressant medications, introduced in the late 1960s, had a similarly dramatic impact on outpatient psychiatric treatment for depression and anxiety disorders. The introduction of selective serotonin reuptake inhibitors in the late 1980s and early 1990s greatly helped expand the involvement of the primary health care sector in the treatment of depression and other common mental disorders. By the early 2000s, over 70% of antidepressant prescriptions in the United States were by general medical providers (Mojtabai & Olfson, 2008).

These significant advances in both pharmacologic and behavioral interventions to treat mental disorders make the ongoing disparity between the need for care and the receipt of treatment for mental disorders all the more noteworthy. Apparently, the field has had greater success in creating more effective treatments for mental disorders than it has in reducing or removing diverse multilevel barriers to care seeking. Based on data from the 1992–1993 National Comorbidity Survey (NCS), only 20% of individuals who met criteria for a mental disorder in the year prior to being interviewed sought care of any kind (Kessler et al., 2005). That figure rose to 32% a decade later in the 2001–2003 NCS-R (Kessler et al., 2005). Even among people with the most severe mental illnesses (5%–6% of respondents), only 24% (1992–1993) and 41% (2001–2003) had sought treatment. These (p.441) findings suggest that a large number of people who potentially could benefit from treatment neither seek nor receive care. As a result, the advances in the technologies of mental health treatment are mostly lost to the majority of individuals in greatest need of treatment, whose illnesses give rise to significant social, economic, and health burden at the individual, community, and national levels.

This treatment gap is not unique to the United States. In an international study of mental disorders and their treatment in the early 2000s (the World Mental Health Surveys) the World Health Organization found that only one-third to one-half of individuals with serious mental conditions in developed countries and one in seven to one in four individuals in developing countries received mental health treatment in the preceding year (Demyttenaere et al., 2004; for country-specific information, see Table 16-1.) For those with less severe illness, the treatment gap was (p.442) even more pronounced across regions and income level. Even among those who ultimately do get care, the amount of time between illness onset and first treatment may be surprisingly long: from 6 to 10 years for many common, disabling mood and anxiety disorders (e.g., major depression or panic disorder) (Wang, Berglund, Olfson, & Kessler, 2004; Wang, Berglund, et al., 2005).

Table 16-1. Percentage of Participants with Serious, Moderate or Mild Conditions Who Received Treatment in the Prior Year in the WHO World Mental Health Surveys

Country

Serious % (95% confidence interval)

Moderate % (95% confidence interval)

Mild % (95% confidence interval)

AMERICAS

Colombia

23.7 (15.2–32.3)

11.5 (6.6–16.5)

8.4 (4.5–12.4)

Mexico

20.2 (12.7–27.8)

18.6 (12.5–24.8)

10.2 (5.5–14.9)

United States

52.3 (48.5–56.1)

34.1 (30.9–37.4)

22.5 (19.0–26.1)

EUROPE

Belgium

53.9 (25.2–82.5)

50.0 (35.8–64.2)

28.2 (14.9–41.4)

France

63.3 (38.6–88.1)

35.7 (21.4–49.9)

22.3 (15.8–28.9)

Germany

49.7 (26.6–72.8)

30.5 (18.5–42.5)

27.9 (14.5–41.3)

Italy

. . .

30.5 (19.3–41.7)

18.9 (11.3–26.6)

Netherlands

50.2 (29.5–70.8)

35.0 (15.7–54.2)

26.5 (15.6–37.4)

Spain

64.5 (49.2–79.7)

37.9 (26.8–49.0)

35.2 (23.8–46.6)

Ukraine

19.7 (13.9–25.6)

17.1 (9.7–24.4)

7.1 (1.2–13.0)

MIDDLE EAST AND AFRICA

Lebanon

14.6 (5.8–23.4)

9.7 (2.6–16.7)

4.5 (0.6–8.5)

Nigeria

. . .

. . .

10.3 (3.7–17.0)

Asia

Japan

. . .

16.7 (4.5–28.9)

11.2 (0.1–22.3)

PEOPLE’S REPUBLIC OF CHINA

Beijing

. . .

11.9 (0.0–26.2)

2.0 (0.0–4.8)

Shanghai

. . .

. . .

0.5 (0.0–1.7)

Severity levels were defined according to the criteria of the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 1994). Ellipses indicate that the results were not reported because of sparse data (<30 at the severity level).

Source: Adapted from Demyttenaere et al., 2004, table 5.

Addressing the unmet need for mental health care requires a better understanding of both treatment seeking and barriers to service use. With greater understanding of the public health and human implications of the unmet need for effective, quality mental health treatment, there have been numerous attempts to address the problem and increase treatment seeking for common mental disorders. These efforts have primarily targeted two barriers to treatment seeking: cost of care and stigma. This chapter first presents an overview of the process of seeking mental health treatment in community-based settings and briefly discusses stigma and financial barriers to mental health care. Attempts to overcome these barriers have been at the forefront of the public mental health agenda for many years, with varying degrees of success. The chapter then explores some of the most significant public health campaigns targeting the stigma associated with mental illness and treatment seeking. Finally, it examines a range of policy initiatives that have sought to eliminate or reduce financial barriers that stand between treatment need and treatment receipt.

Models of Treatment-Seeking Behavior

Treatment seeking is a complex phenomenon involving motivational, cognitive, social, and cultural factors. Furthermore, formal treatment seeking involves interactions between the individual and the treatment system. Over the years, a number of theoretical models have been proposed to explain treatment seeking and determine the factors that affect it. This section reviews some of the better-known theoretical models of mental health treatment–seeking behavior and discusses their strengths and limitations.

“Sick Role” and “Illness Behavior”

Attention to treatment-seeking behavior is not unique to the mental health field. Practitioners in other health care fields have examined treatment-seeking behavior as an important factor in community-based care for common physical disorders (Dankner, Geulayov, Olmer, & Kaplan, 2009; Petrella & Campbell, 2005). Sociological studies of health and illness were among the earliest to assess the concept of treatment-seeking behavior. The sociologist Talcott Parsons, a pioneer in this tradition, posited that sick individuals adopt a social role associated with a set of expected behaviors from both the individual inhabiting the “sick role” and his or her social circle. Thus, Parsons saw illness not solely as a medical condition but also as a social role conveying rights and responsibilities both for the person in the sick role and for the larger society (Parsons, 1951). In this model, sick persons are exempted from normal social obligations and responsibilities and are not held responsible for their health status. The sick person, however, is expected to be motivated toward achieving improved health, and therefore, is responsible for seeking treatment.

In Parsons’s view, the sick role represents a form of motivated social deviance; the treating professional is viewed as an agent of social control (Parsons, 1951). Illness is, in Parson’s view, “motivated to a high degree and therefore may legitimately be regarded as a type of deviant behavior” (Parsons, 1951, p. 285). This conception of illness is primarily modeled after acute physical illnesses with a brief course that fully remit with appropriate medical care. The model, however, has been criticized because of its reliance on the traditional patient–doctor relationship; and it may not apply to chronic conditions, such as some mental disorders, in which full remission may be never be achieved (Crossley, 1998). Nonetheless, Parsons’ conceptualization of the sick role both influenced the work of subsequent theorists and drew attention to social factors that may influence treatment-seeking behavior.

In the early 1960s, the sociologist David Mechanic (1962) described a set of behaviors, termed “illness behavior,” which could explain (p.443) variations in treatment-seeking behavior. He defined illness behavior as:

the ways in which given symptoms may be differentially perceived, evaluated, and acted (or not acted) upon by different kinds of persons. Whether by reason of earlier experiences with illness, differential training in respect to symptoms, or whatever, some persons will make light of symptoms, shrug them off, and avoid seeking medical care; others will respond to the slightest twinges of pain or discomfort by quickly seeking such medical care as is available. . . . Variables affecting illness behavior come into play prior to medical scrutiny and treatment, but after etiological processes have been initiated. In this sense, illness behavior even determines whether diagnosis and treatment will begin at all. (p. 189)

Factors that Mechanic identified as influencing the characterization of a given problem as an illness that is in need of treatment included the following:

  • visibility, frequency, and chronicity of symptoms

  • perceived seriousness of the problem

  • disruption in role functioning

  • knowledge, cultural assumptions, and alternative explanations for the problem

  • competing needs

  • treatment availability

The illness behavior framework therefore helps explain individual variations in responses to the distress associated with experiences of common psychiatric disorders by illuminating the role that social factors, attitudes, and various personal evaluations play in the treatment-seeking process.

Social Network Perspective

While family and other social networks are featured in Mechanic’s illness behavior model (Mechanic, 1962), they are even more prominent in the work of proponents of the social network perspective, such as Charles Kadushin. An early proponent, Kadushin (1969) discovered the impact of a person’s social circle—what he called the “friends and supporters of psychotherapy”—on treatment seeking among patients in psychoanalytic clinics in New York City.

The impact of social networks also features prominently in the work of the sociologist Bernice Pescosolido, who proposed a dynamic, network-episode model of treatment seeking. According to this model, which draws on elements of many other treatment-seeking models, “dealing with health problems is a social process that is managed through the contacts (or social networks) that individuals have in the community, the treatment system and the social service agencies” (Pescosolido & Boyer, 1999, p. 406.) This model, unlike others, recognizes the use of mental health services as a dynamic process incorporating sociodemographic and socioeconomic factors; illness characteristics; social networks and social support; coping skills; attitudes toward mental illness and assessment of need; and treatment system–related factors such as quality, accessibility, equity, and previous experience with service use. By working to capture the various factors that influence each other continuously and evolve with time, this model represents an advance over previous single-episode, unidirectional models of mental health treatment–seeking behaviors.

Andersen’s Sociobehavioral Model

Perhaps no model of treatment seeking matches the popularity achieved by the sociobehavioral model introduced in the 1960s by Ronald Andersen (Andersen, 1968; Andersen & Newman, 1973). The model details three sets of factors involved in treatment seeking (See Figure 16-1):

  • need factors that are experienced as uncomfortable, necessitating professional help (e.g., distress or pain)

  • predisposing factors, which represent the social and cultural influences on the decision to seek professional help (e.g., gender, race, education, and health beliefs)

  • (p.444) enabling factors that facilitate or hinder access to services (e.g., geographical distance and insurance coverage) (Andersen, 1995)

Pathways to CareNeed, Attitudes, Barriers

Figure 16-1 Andersen’s Original Sociobehavioral Model of Health Service Use.

Source: Reprinted with permission from Andersen, 1995, figure 1.

Despite criticisms and further elaborations (Andersen, 1995), the original Andersen model is commonly used as a template for organizing the factors that affect the treatment-seeking process. That the terms “need factors,” “predisposing factors,” and “enabling factors” have permeated the study of treatment seeking is a testimony to the model’s popularity.

Theory of Reasoned Action

The foregoing theoretical models originated primarily from sociology. However, a few psychologists and other mental health specialists also have articulated or contributed to the development of models of treatment-seeking behavior. For example, Fishbein’s well-known theory of reasoned action has been applied to a wide range of health behaviors (Ajzen, 1980; Albarracin, Johnson, Fishbein, & Muellerleile, 2001; Bayer & Peay, 1997; Fishbein, Ajzen, & Hornik, 2007; Lierman, Young, Kasprzyk, & Benoleil, 1990). As the term “reasoned action” implies, the theory assumes that human behavior follows reasonably (though not necessarily rationally) from beliefs about performing that behavior, attitudes associated with those beliefs, and anticipated outcomes. (See Figure 16-2.) Under the model, behavioral beliefs influence attitudes about the behavior, including costs, benefits, and outcome expectancies. Normative (p.445) beliefs influence perceived norms (such as social expectations and social pressure), and control beliefs influence perceived self-efficacy. Together, these attitudes influence intention to act (Fishbein, 2008; Fishbein & Ajzen, 1975; Fishbein et al., 2007).

Pathways to CareNeed, Attitudes, Barriers

Figure 16-2 Theory of Reasoned Action.

Source: Adapted with permission from Fishbein & Ajzen, 1975.

Unlike some sociological theories of treatment seeking, the theory of reasoned action focuses on individuals’ beliefs, attitudes, and expectations as decisive factors in treatment-seeking decisions. (Some of these evaluative factors are included in Mechanic’s model of illness behavior as well.) The theory of reasoned action does not deny the influence of access to care and social factors in treatment-seeking behavior; rather, it encompasses those factors as elements within an individual’s attitudes, evaluations, and belief system.

In all, the theory of reasoned action provides a powerful context for understanding and predicting personal health behaviors (e.g., the use of condoms or the use of preventive health services such as colonoscopy and mammography) (Fishbein, 2008). Yet despite its broad use, the model’s explanatory power with respect to seeking help for an illness is limited, primarily due to its omission of factors such as pain, distress, and disability that influence perceived need. Unlike individuals who opt to use a preventive service or to adopt a particular health-preserving behavior, those who seek help for a mental or physical illness often are both distressed and impaired, two of the most consistent, powerful predictors of mental health treatment seeking. Indeed, these two factors often drive perceived need for care and may profoundly affect or alter attitudes toward mental health treatment–seeking behavior (Mojtabai, Olfson, & Mechanic, 2002). They simply cannot be relegated to the role of background influences. Nevertheless, despite its deficiencies, the theory of reasoned action provides a detailed representation of the more proximal processes involved in treatment-seeking decisions.

Mental Health Care Seeking as a Decisional Balance

The multiplicity of models that attempt to explicate treatment seeking is perhaps testament to the elusive nature of the treatment-seeking process itself. As a behavior, mental health treatment seeking is influenced by a host of factors, including an individual’s psychopathology, self-evaluation of his or her mental state, attitudes toward and previous experiences with the mental health care system, reactions and attitudes of the immediate and the larger social circle, and assessments of the economic and personal costs and benefits of treatment seeking. Many models have striven to accommodate these factors. Some have incorporated change over time as an element in treatment-seeking stages, episodes, or careers (Pescosolido & Boyer, 1999). The network-episode model of Pescosolido and Boyer is especially suitable for representing help-seeking behavior over time and over multiple episodes of care, which is common in treatment-seeking for behavioral health problems.

However, there are significant variations in pathways to treatment according to severity and nature of behavioral disorders and by stages of life. Models that attempt to incorporate all of these factors generally lack parsimony—an important virtue for any explanatory model. In contrast, significantly parsimonious models, by necessity, are reductive and do not reflect the full complexity of the process or the process over time and over multiple episodes of care.

Over the last three decades, findings from large, general population surveys on the prevalence of treatment seeking, perceived need for care, attitudes toward treatment, and perception of barriers to care have provided new insights into the treatment-seeking process (Leaf, Livingston-Bruce, Tischler, & Holzer, 1987; Mojtabai, 2005, 2009b; Regier et al., 1993). A common finding from many surveys in the United States and abroad is that perception of need for mental health services plays a central role in seeking care (Edlund, Unutzer, & Curran, 2006; Mojtabai et al., 2002; Van Voorhees et al., 2006). In an analysis of data from 24 countries included in the WHO’s World Mental Health (WMH) Survey, a lack of perceived need was the most common reason for not seeking treatment (Andrade et al., 2014). Perceived need for treatment is influenced by the severity of distress, knowledge of treatment resources, and (p.446) attitudes toward mental health treatments (Edlund et al., 2006; Mojtabai et al., 2002; Van Voorhees et al., 2006). Similarly, perceptions about barriers to mental health care are based on assessing the factors that can compromise access to care (e.g., geographic distance, cost of or limits to care, insufficient or absent insurance coverage, or limited financial resources) as well as perceptions of norms, social attitudes, and stigma. Among those in the WMH survey who indicated perceiving a need for treatment, over two-thirds expressed wanting to deal with the problem on their own. It is important to note however, that while barriers related to attitudes were important among individuals with mild or moderate mental health problems, structural barriers were the most important barriers noted by individuals with severe mental ill health (Andrade et al., 2014).

Whether or not an individual decides to seek treatment is the product of balancing the perceived need for treatment against the perceived barriers that impede treatment seeking (see Figure 16-3). Thus the decision to seek mental health care most often is the result of these countervailing influences. This model of mental health treatment seeking combines psychological factors (attitudes and expectations) and social and structural factors (social stigma, availability of services, financial accessibility) with the important added dimension of perception of need.

Pathways to CareNeed, Attitudes, Barriers

Figure 16-3 A Decisional Model of Mental Health Treatment Seeking.

Pathways to Mental Health Care

Models of mental health treatment seeking generally do not distinguish among different sources of care. In some countries, such as the United Kingdom, primary care physicians serve as gatekeepers for all specialty care, including mental health (Goldberg & Huxley, 1992; Issakidis & Andrews, 2006). Some managed care organizations in the United States have adopted a similar model, requiring prior authorization before specialty care may be provided. In such settings, patients have little choice regarding the source of formal care. In settings in which patients have greater choice among sources of medical care, the choice of provider is influenced by a range of factors, including gender, age, and severity of illness (Ettner & Hermann, 1997; Frank & Kamlet, 1989; Leaf et al., 1988; Mainous & Reed, 1993; Sturm, Meredith, & Wells, 1996). Much of the past research has focused on the choice between seeking medical care in the specialty mental health sector (e.g., with psychologists or psychiatrists) versus the primary care sector, where a growing share of treatment for mental health problems is being delivered. Some research has found that women, older adults, and individuals with physical illnesses are more likely to seek treatment from general medical providers than from mental health specialists (Leaf et al., 1988; Wang et al., 2006), likely because they more likely than other population groups to have contact with general medical providers. The multiplicity of potential service providers adds a new dimension to the treatment-seeking models discussed earlier. With the growing diversification of both providers and treatment settings (Frank & Glied, 2007; Wang et al., 2006), future models of treatment-seeking behavior must take choice of provider and setting into account, as well as factors that influence those choices.

(p.447) Barriers to Care

Over the years, many barriers to mental health care have been recognized. Such barriers have often been characterized as either attitudinal (e.g., internalized stigma and negative beliefs about the effectiveness of mental health treatments) or structural barriers (e.g., geographical distance, physical inaccessibility of mental health services and providers, and disparate or insufficient insurance coverage for those services).

From a global perspective, the availability of services and providers is a stronger deterrent to use of mental health services than are attitudinal and financial barriers. Data from the World Health Organization’s Project Atlas (World Health Organization [WHO], 2011) have shown remarkable variation in the availability of services and providers around the world. The median distribution of psychiatrists, for example, was found to vary from 0.05 per 100,000 population in the African region to 8.6 per 100,000 in the European region. The number of other mental health professionals, such as psychologists, psychiatric nurses, and social workers, similarly differed by country income-level groupings. In high-income countries, where providers and services are more readily available, factors such as stigma, low rates of perceived treatment need, and inadequate or disparate insurance coverage likely play a more prominent role. The remainder of this chapter explores stigma and financial burden, both the subject of growing attention and recent public health policy initiatives, as barriers to care.

Stigma of Mental Illness and Treatment-Seeking Behaviors

An ample body of evidence affirms that many individuals suffering from mental illnesses are subject to stigma and discrimination in many aspects of their lives (Chong et al., 2007; Corrigan, Watson, & Miller, 2006; Crisp, Gelder, Rix, Meltzer, & Rowlands, 2000; Gaebel, Baumann, Witte, & Zaeske, 2002; Kleinman & Hall-Clifford, 2009; Link & Phelan 1999; Link, Yang, Phelan, & Collins, 2004; Phelan & Link, 1998; Saravanan et al., 2008; Thara & Srinivasan, 2000). Stigma has been defined by sociologist Erving Goffman (1963) as “an attribute that is deeply discrediting” and described it as a process that transforms an individual “from a whole and usual person to a tainted, discounted one.” The stigma associated with mental illness is pervasive and multifaceted and may be anticipated, perceived, directly experienced through discriminatory acts, or internalized by an individual living with a mental disorder. These multiple forms of stigma can all have economic, social, and health consequences, including effects on treatment seeking.

Experiences of stigma are global in nature; in a 27-nation study, people with schizophrenia said they experienced adverse discrimination in a variety of ways and milieus (Thornicroft et al., 2009). Almost half reported experiencing stigma in their relationships with friends and family, and almost 30% in intimate relationships, in the workplace, or in job searches. These individuals are not misperceiving the attitudes of those around them; most surveys of public attitudes toward people with mental illnesses corroborate these reports. Results of the 2006 Eurobarometer survey of a general population sample in European Union countries, for example, found that large proportions of the community regarded the mentally ill as unpredictable or dangerous (Directorate-General of Health and Consumer Protection (SANCO)–European Commission, 2006). (See Figure 16-4.) In another survey of adults in the United Kingdom, Crisp and colleagues (2000) found that the lay public believed people with schizophrenia, alcoholism, or drug addiction to be dangerous. A similar result was found in a sample of Germans who were asked to characterize individuals with schizophrenia (Angermeyer & Matschinger, 2003).

Pathways to CareNeed, Attitudes, Barriers

Figure 16-4 Mental Illness Stigma in the European Union Countries.

Source: Reprinted with permission from Directorate-General of Health and Consumer Protection (SANCO)–European Union, 2006.

The stigma that surrounds mental illness is not limited to the mental disorders that are perceived to be severe and disabling, such as schizophrenia. The public also evidences negative attitudes toward what are perceived to be less severe disorders, such as depression and anxiety (Alonso, Buron, Bruffaerts, et al., 2009; Alonso, Buron, Rojas-Farreras, et al., 2009). In a study of stigma and depression encompassing over 1,000 people from 35 (p.448) countries, nearly 80% of individuals with a diagnosis of major depressive disorder seeking specialist mental health services reported having experienced discrimination in one life domain. Individuals were more likely to report stigma if they were unemployed; if they were divorced, separated, or widowed; or, if they had previously been admitted to a hospital or had multiple depressive episodes (Lasalvia et al., 2013).

There is mixed evidence as to whether stigma may be more pronounced in low and middle-income (LMIC) settings compared to high-income countries (HIC). In a cross-national study, perceived stigma for mood and anxiety disorders was found to be roughly twice as common in LMIC than HIC (Alonso et al., 2008). In addition, while it should be noted that human rights violations against individuals living with mental disorders occur globally, the severity and prevalence of these violations in LMIC where there are few treatment options has been highlighted (Drew et al., 2011). For other disorders and forms of stigma, exposure has been found to be similar in LMIC and HIC; for instance, stigma related to schizophrenia (Thornicroft et al., 2009) and discrimination related to depression (Lasalvia et al., 2013; Lasalvia et al., 2015. Yet, anticipated stigma for depression (Laslvia et al., 2015) was actually found to be lower on average in LMIC than in HIC.

Regardless of the relative frequency of experiences of stigma across countries, it is important to note that the nature of stigma may vary by context and culture. Studies from India (Thara & Srinivasan, 2000), Ethiopia (Shibre et al., 2001), and China (Phillips, Pearson, Li, Xu, & Yang, 2002) for instance, have found that the stigma of mental illness extends beyond the individual. Family members of an individual with a mental disorder may have difficulty gaining employment, finding partners for their children, and being accepted by their community even if they themselves do not have a disorder. Pescosolido and colleagues (2013) sought to understand whether or not stigma might be comprised of common attitudes and understandings across countries by asking participants in 16 countries representing various income levels and regions to respond to questions regarding treatment, course of illness, and careseeking after reading vignettes describing schizophrenia or depression. Participants from different countries were similar in endorsing stigmatizing attitudes. For example, being unwilling to have someone with schizophrenia care for their children was highly (p.449) endorsed across countries, while the thought that people with schizophrenia are not intelligent was less commonly endorsed.

There is evidence that stigmatizing attitudes have an effect on treatment-seeking behaviors. In a recent systematic review, Clement and colleagues (2015) identified 144 studies conducted among over 90,000 participants that sought to characterize the relationship between stigma and seeking care for a mental disorder. The median effect size (Cohen’s D) for the association was -0.27 (range: -2.73–0.36), with the majority of the studies finding statistically significant reductions in care seeking associated with greater experiences of stigma. Negative effects were most consistently found for internalized stigma and stigma specifically associated with receiving treatment for mental ill health. Findings related to experienced, anticipated, and perceived stigma were more equivocal. In addition, in analyzing data from 44 studies on barriers to the receipt of mental health care, people living with mental disorders ranked stigma as 4th most important barrier to treatment seeking, with between one in three to one in five individuals reporting stigma of some kind as a barrier to care. The association, however, may not be uniform. In one study, believing that individuals living with mental illness were unpredictable or to blame for their illness, as well as living in a community with strong beliefs in blameworthiness, were both associated with a decreased willingness to seek professional help (Mojtabai, 2010). A reverse association was found for beliefs that individuals living with mental illness are dangerous or not likely to recover and for living in a community where these ideas are common.

The association between stigma and care-seeking behavior is also influenced by choice of provider and setting. Typically, greater stigma is associated with seeking help from specialty mental health care providers than from general medical providers. A national study on the stigma of childhood mental disorders found that even among individuals who correctly identify serious childhood mental disorders (e.g., attention deficit hyperactivity disorder), most preferred to access care from general practitioners, teachers, family, friends, and nonmedical counselors over psychiatrists or psychologists or in a specialty setting (Pescosolido et al., 2008). In a large study in Chile, only 6% of those with a mental disorder were found to have received specialty mental health care; 44% had seen another type of treatment provider (Vicente, Kohn, Saldivia, Rioseco, & Torres, 2005). The study found that stigma was one of the key barriers to seeking care from mental health specialists.

Other studies have found that stigma plays an adverse role in adherence to treatments among individuals receiving care. Though findings have been mixed, internalized stigma has been found to lead to poorer treatment adherence for multiple disorders (Livingston & Boyd, 2010). Perceived stigma has been specifically linked to treatment discontinuation among older adults and poorer treatment adherence for depression (Sirey et al., 2001a; Sirey et al., 2001b).

Public Mental Health Campaigns to Fight Stigma

The first recommendation of the 2003 President’s New Freedom Commission on Mental Health was to “[a]dvance and implement a national campaign to reduce the stigma of seeking care” (p. 17). This was not the first call to action or the first recognition that stigma needs to be combatted. In fact, over the years, recognition of the large gaps between the significant need for mental health care and markedly lower levels of service use has given rise to a number of public information campaigns (Aseltine, Schilling, James, Murray, & Jacobs, 2008; Buist et al., 2007; Hickie, 2004; Jacobs, 1995; Jorm, Christensen, & Griffiths, 2005, 2006a; Morgan & Jorm, 2007; Olfson et al., 2002; Paykel, Hart, & Priest, 1998; Paykel et al., 1997; Rix et al., 1999). The aims of many of these initiatives has been to increase public recognition and understanding of mental illnesses, provide information about available community-based treatment resources, and dispel common myths and stigma associated with those disorders and their treatment.

One of these programs in the United States is the National Anxiety Disorders Screening Day (Olfson et al., 2002). Initiated in 1993 and sponsored by a number of organizations (p.450) including the American Psychiatric Association, the American Psychological Association, and the National Institute of Mental Health (NIMH), the program is designed to screen people for symptoms of common anxiety disorders. The program is conducted annually during the first week of May in sites across the 50 states and the District of Columbia. In advance of the designated screening day, each screening site receives an information packet describing recommended screening procedures and providing advice on how to publicize the event (Olfson et al., 2002). On the screening day, participants are invited to view an educational video about common anxiety disorders and major depression; they are then asked to complete a screening questionnaire. A mental health professional reviews the responses with each participant, gathering further information about symptoms and determining whether referral for treatment is indicated. Large proportions of participants receive referrals after being found to meet diagnostic criteria for the common mood and anxiety disorders. However, neither follow-up rates nor broader effects of the program on public knowledge, attitudes, and treatment seeking have been investigated.

The Defeat Depression campaign, sponsored by the Royal College of Psychiatrists and the Royal College of General Practitioners in the United Kingdom, is another prominent public mental health campaign (Paykel et al., 1998; Paykel et al., 1997). The 5-year (1992–1996) campaign, part of a broader initiative to improve prevention, detection, and treatment of depression in the United Kingdom, was designed to enhance public awareness of the nature, course, and treatment of depression and to improve the skills of general practitioners in detecting and treating depression (Paykel et al., 1998; Paykel et al., 1997; Rix et al., 1999). The campaign’s public elements included distribution of books, audiotapes, leaflets, and fact sheets in English and other languages; publication of magazine and newspaper articles; and, participation of mental health professionals in educational television and radio interviews and press conferences. General practitioners received practice guidelines, other publications, and videotapes to amplify their ability to recognize and manage depression in patients. General population surveys in 1991, 1995, and 1997 found a rise in the proportion of individuals reporting experience with depression themselves or in a close friend, from 22% and 13%, respectively, in 1991, before initiation of the program, to 25% and 18% in 1997 (Paykel et al., 1998; Paykel et al., 1997; Rix et al., 1999). The surveys also disclosed an increase in the proportion of people who thought that:

  • “Depression is a medical condition like other illnesses” (rising from 73% in 1991 to 81% in 1997).

  • People suffering from depression should be offered antidepressants (up from 16% to 24%).

  • Antidepressants are an effective treatment (rising from 46% to 60%) (Paykel et al., 1998).

An earlier, somewhat similar US public health campaign focused on depression was the Depression Awareness, Recognition, and Treatment Program (or D/ART for short), sponsored in the 1980s by the NIMH (Regier et al., 1988). D/ART included a multiphase information and education campaign to help improve the knowledge of both health professionals and the general public about depressive disorders and the availability of community-based treatment options. This effort was followed in the coming years by other public and private initiatives. A more recent example is the “Real Men. Real Depression” campaign that ran from 2003 through 2005 and included a series of television and radio public service announcements as well as print media featuring men telling how depression affected their lives. During the campaign’s lifetime, the NIMH distributed nearly one million copies of various printed material in English and Spanish to individuals and organizations. In addition, there were 14 million hits on the website, and over 150,000 copies of the material were downloaded from the Web. There were also nearly 5,000 e-mails and phone calls to the information hotline (NIMH, 2009).

Among the ongoing national mental health awareness campaigns, Australia’s Beyondblue is perhaps the most extensive (Jorm et al., (p.451) 2005). (See Figure 16-5.) Since its inception in 2000 under the aegis of the Australian national government and its state and territorial governments, Beyondblue has enjoyed wide support, including significant unsolicited donations from Australian businesses and individuals (Beyondblue, 2008). The central campaign aim is to increase awareness of and to destigmatize mental illnesses and their treatments. Reaching out through traditional and nontraditional print and electronic media outlets, the campaign makes a special effort to reach both students and individuals in rural areas, groups known to have less access to mental health services. In 2008, the Beyondblue website (http://www.beyondblue.org) was reported to be the most visited lay or professional health-related website in Australia (Beyondblue, 2008). A number of surveys have documented an Australia-wide increase in public awareness both of mental disorders and of the Beyondblue initiative itself (Beyondblue, 2008; Jorm et al., 2005, 2006a; Morgan & Jorm, 2007). For example, 56% of respondents to a 2007–2008 survey spontaneously mentioned depression as a major mental health problem, up from 49% in a survey 5 years earlier (Beyondblue, 2008). Similarly, 10% of those surveyed in 2007–2008 mentioned bipolar disorder as a major mental health problem, up from a zero rate of recognition in 2002. Awareness of the Beyondblue campaign (p.452) also has increased across the years. Fewer than one-third of respondents (31%) were aware of the campaign in 2002; by 2007–2008, over three-fourths (76%) were (Beyondblue, 2008). Notwithstanding these positive findings, recognition of mental disorders as major health problems in Australia remains low. As late as the 2007–2008 survey, only 8% identified mental health as a major health issue. In contrast, 59% identified obesity as a major health issue, 46% identified cancer, 35% identified heart disease, and 24% identified diabetes (Beyondblue, 2008).

Pathways to CareNeed, Attitudes, Barriers

Figure 16-5 Antistigma Poster from the Beyondblue Initiative.

Source: From http://www.beyondblue.org.au/index.aspx?link_id=105.903

Beyond these and other nationwide public campaigns designed to improve recognition and treatment of common mental disorders, a number of international initiatives have targeted efforts on reducing the stigma associated with mental disorders. In 1996, the WHO launched a program in over 20 countries designed to combat the stigma associated with schizophrenia (Sartorius, Schulze, & Global Programme of the World Psychiatric Association, 2005). While precise program content varied from country to country, most sites undertook a survey of public knowledge and attitudes; public education through newspaper and magazine articles and school-based programs; and training and continuing education for health care providers (Sartorius & Schulze, 2005).

The expansion of the Internet and the growing use of this electronic medium as a source of health information has provided information campaigns with a new means of reaching an even larger audience. A panoply of Web-based public education programs about mental health issues, sponsored by a broad array of public and private agencies, are ongoing in the United States, such as Depression Is Real (www.depressionisreal.org) and CBS Cares (www.cbs.com/cbs_cares/topics/?sec=5; http://wwwapps.nimh.nih.gov/health/publications/real-men-real-depression.shtml). The number of such resources is likely to increase exponentially in coming years.

Changes in Public Attitudes Toward Mental Health Treatment Seeking

A 2007 US study based on data from the NCS and the NCS-R found a modest but significant positive change in public attitudes toward treatment seeking for mental disorders (Mojtabai, 2007). For example, 41.4% of NCS-R participants reported that they would definitely go for professional help, compared with 35.6% in 1990–1992. The NCS-R respondents also reported greater comfort talking with a professional about personal problems (32.4% compared with 27.1% in 1990–1992); they also felt less embarrassed if others found out about their doing so (40.3% compared with 33.7% in 1990–1992) (Mojtabai, 2007). These changes in attitude were particularly prominent among younger age groups.

Similar attitude changes have been noted in other parts of the world (Angermeyer & Matschinger, 2005; Jorm, Christensen, & Griffiths, 2006b). For example, reporting on data from two surveys, Angermeyer and Matschinger (2005) found that between 1990 and 2001, the German public became more inclined to recommend that in the case of schizophrenia or major depression, help be sought from psychiatrists or psychotherapists. It is tempting to attribute these attitude changes to public mental health campaigns such as those described earlier. The more significant change in the opinions of the younger generation found in the US study suggests that the educational system or the popular media (to which the young are heavily exposed) may play a part in public attitude changes.

Untangling the causes underlying changes in attitude toward mental health service use in recent years is not a simple proposition. Individual attitudes likely are influenced by far more than public education campaigns, formal education systems, or media. The attitudes of others in one’s social network, the changing beliefs regarding the etiology of mental disorders and socioeconomic factors all may play a role. While there is some evidence that mass media education campaigns have been effective in reducing prejudicial attitudes and increasing knowledge (Clement et al., 2013; Thornicroft et al., 2016), evidence as to whether or not those reductions translated into changes in discriminatory behavior and practices is more limited. There is clearly a widespread assumption that behavior change must happen through a change in attitudes (Thornicroft et al., 2016) and (p.453) some limited evidence supporting the effect of attitudes on future treatment seeking (Mojtabai et al., 2016). While education is the most commonly used strategy to reduce stigma, among adults, contact-based interventions may be more successful in generating short-term reductions in stigma (Thornicroft et al., 2016), though evidence of relative benefit to other types of interventions in the long term is lacking (Mehta et al., 2015). A 2012 meta-analysis that compared the impact of various interventions on public attitudes and behavior found that both interventions that aimed to educate the general public about mental disorders and interventions that promoted contact between potential stigmatizers and individuals living with stigmatized mental health conditions improved attitudes (Corrigan et al., 2012). However, education interventions were more effective among adolescents than adults (Corrigan et al., 2012).

Growing Medicalization of Public Attitudes About Mental Illness

Thanks to decades of basic and clinical research, the public increasingly believes that mental illnesses are biologically based (Blumner & Marcus, 2009). Data from the 2006 US General Social Survey, for example, demonstrate that 88% of participants believed depression to be attributable to biological causes, up from 77% a decade earlier (Blumner & Marcus, 2009). Similarly, attitudes about the treatment of depression have become more positive. In 2006, 60% of participants in that study thought going to a general practitioner or psychiatrist or using prescription medications was an appropriate first treatment for the disorder, up from 48% in 1996; 41% thought talking with a therapist, counselor, clergy member, or other religious leader or joining a self-help group was an appropriate first treatment, down from 52% in 1996 (Blumner & Marcus, 2009).

This and other studies of public attitudes about mental illnesses conducted in the United States (Mojtabai, 2009a), Germany (Angermeyer & Matschinger, 2005), and Australia (Jorm et al., 2006b) have detected a similar uptick from the 1990s to the 2000s in positive evaluation of the benefits of medications in treating a broad array of mental disorders. According to the 2006 US General Social Survey, 76% of participants agreed or strongly agreed that taking psychiatric medications makes relations easier with family and friends, up from 68% 8 years prior. The study also found people more willing to use psychiatric medications in 2006 (49.1%) than in 1998 (41.2%) (Mojtabai, 2009a). Similarly, a 2001 German survey found that 40% of the general public recommended psychiatric medications for treatment of depression, up from 29% a decade earlier (Angermeyer & Matschinger, 2005).

Reasons underlying these changed views and attitudes about the use of medications remain poorly understood. Many of the previously discussed public information and education campaigns emphasize that most mental disorders have a biological base. With the explosion of research in the 1990s, declared the Decade of the Brain by then-President George H. W. Bush (1990), significant advances in knowledge of the genetic and physiological underpinnings of mental disorders were publicized broadly in the mass media. At the same time, a growing literature has focused on the organic bases of psychological and social stressors (Grassi-Oliveira, Ashy, & Stein, 2008; Shea, Walsh, MacMillan, & Steiner, 2005) and on the organic correlates of psychosocial treatments for mental disorders (de Lange et al., 2008; McClure et al., 2007; Siegle, Carter, & Thase, 2006; Straube, Glauer, Dilger, Mentzel, & Miltner, 2006). This growing medicalization of mental disorders has likely contributed to the growing popularity of medication treatments for mental disorders.

Trends in Psychiatric Medications and Direct-to-Consumer Pharmaceutical Advertising

Changes in public attitudes toward mental illnesses appear to correspond to the increased use of psychiatric medications. For example, in the United States, the use of antidepressants quadrupled from 1990–1992 to 2001–2003, primarily because of increased use of selective serotonin reuptake inhibitors (Mojtabai, 2008). In the period from 2001 to 2003, more (p.454) than 1 in 10 American adults reported having taken an antidepressant medication in the past year. More recent US medication marketing data show that in 2007, antidepressants were the most commonly prescribed class of medications (Jorm & Wright, 2007). Over 70% of antidepressants are prescribed by primary care or other general medical providers, not by psychiatrists (Mojtabai & Olfson, 2008).

Aggressive pharmaceutical marketing and highly visible direct-to-consumer (DTC) advertising of psychiatric medications in the United States1 in recent years may well have contributed to more positive public attitudes toward those medications and to their increased use. In 2005, spending on DTC advertising of all prescription drugs in the United States was estimated at over $4 billion, up from less than $1 billion in 1996 (Donohue, Cevasco, & Rosenthal, 2007). Direct-to-consumer ads frequently are framed as public service announcements that emphasize that mental illnesses are medical disorders, that viewers should discuss their symptoms with their physicians, and that the particular industry-developed medication should be considered a treatment of choice. (See Figure 16-6.)

Pathways to CareNeed, Attitudes, Barriers

Figure 16-6 Direct-to-Consumer Advertising of Pharmaceuticals.

Source: From Google Picasaweb at http://picasaweb.google.com/ShrinkRapRoy/BlogPics#5066145849910761794

Exposure to DTC advertisements for medications is remarkably widespread in the United States. Many more individuals are likely exposed to DTC ads than to any of the public campaigns for mental health discussed earlier in this chapter. For example, a 2001–2002 telephone survey of a nationally representative sample of 3,000 American adults found that 86% of respondents said they had heard or seen a drug advertisement in the previous year, and about 35% said they were prompted by an advertisement to discuss the advertised medication or other health concerns with their physicians. In 43% of these visits, the physician prescribed the advertised drug (Weissman et al., 2003).

Psychiatric medications, particularly antidepressants, are among the most commonly advertised—and prescribed—medications in (p.455) the United States. In a general population telephone phone survey in the early 2000s, 79% of the 300 people interviewed recalled seeing or hearing an advertisement for an antidepressant in the prior 6 months; 25% remembered at least one brand name (An, 2008). Individuals exposed to DTC antidepressant advertising also estimated the prevalence of clinical depression in the population at significantly higher rates than did those who were not exposed to such advertisements (An, 2008).

The effects of DTC marketing are dramatically demonstrated in a study by Kravitz and colleagues (2005), who sent standardized patients (i.e., actors with rehearsed complaints) to see family physicians and internists. Each physician saw a single standardized patient presenting either with symptoms of major depression and wrist pain or with adjustment disorder and back pain. In one-third of the visits, the patient–actors requested a specific, brand-name medication, saying: “I saw this ad on TV the other night. It was about Paxil. Some things about the ad really struck me. I was wondering if you thought Paxil might help.” In another third of the visits, the patient–actors made a more generic request for medication, saying: “I was watching this TV program about depression the other night. It really got me thinking. I was wondering if you thought a medicine might help me.” In the final third of the visits, patient–actors made no request for medication.

In 101 visits with depression symptoms in which a brand-specific or general request for medication was made, 65% of patient–actors received a prescription for an antidepressant. In contrast, fewer than one-third (31%) of the 48 patient–actors who did not request medication for the same complaints received such a prescription. The results were comparable for patient–actor visits presenting with adjustment disorder symptoms (Kravitz et al., 2005). Overall, the study found that a request for a medication was a stronger predictor for getting a prescription than were the presenting symptoms.

From the perspectives of both treatment and health economics, the increased use of antidepressants resulting from DTC advertising has been a double-edged sword. While these prescribing practices may help reduce the unmet need for treatment among individuals with serious mental disorders (Block, 2007), they also may have exposed a much larger group of individuals with mild to moderate psychopathology to the adverse effects of medications. At the same time, over the past decade, the contribution of psychiatric medications to overall mental health care costs has increased markedly. As noted by a group of mental health economists and researchers, “[p]rescription drug spending is the key driver of spending growth in mental health care” (Frank, Goldman, & McGuire, 2009, p. 655). Whether or not the benefits of treating a larger number of traditionally undertreated people with mental illnesses outweigh the human and economic costs of increased use of psychiatric medications has not yet been determined (Block, 2007; Jureidini, Mintzes, & Raven, 2008).

Financial Barriers to Mental Health Treatment Seeking

The effect of financial barriers on the use of mental health care was well illustrated by the multisite Rand health insurance study (Wells et al., 1984), the sole large-scale randomized trial of the effect of patient-borne coinsurance on service use in the United States. Observational studies exploring the effect of insurance coverage on service use are difficult to interpret, particularly given adverse selection (i.e., selective enrollment in programs with more generous coverage by individuals with a greater need for health services). The resulting absence of a randomized study group unfortunately makes it impossible to tease apart the effect of illness severity from the effects of copayments on both plan choice and service use.

Compared with free patient coverage, the Rand study found that imposition of a 95% patient-borne copayment was associated with a 47% reduction in the use of outpatient mental health services and a 33% reduction in the use of outpatient general medical services (Wells et al., 1984). Thus while reduced service use was not unique to mental health, the reduction was more pronounced in this area than in other areas of health care. At its heart, the study (p.456) found that reducing financial disincentives to care—deductibles, copayments, and caps on benefits—was associated with increased use of both medical and mental health services, with a somewhat larger effect on mental health services.

Trends in Financial Barriers

Improvements in state and federal parity laws and in insurers’ voluntary parity initiatives over the past two decades have led to somewhat lower out-of-pocket payments for mental health care in the United States. Between 1996 and 2003, out-of-pocket expenditures for outpatient mental health care dropped from 39% to 35% (Zuvekas & Meyerhoefer, 2006). However, the reduction in out-of-pocket costs was even greater for physical health care visits, dropping from 31% to 26%. Thus despite some progress, the ratio of out-of-pockets costs remained significantly higher for mental health care than for physical health care.

Moreover, the modest decline in out-of-pocket costs for outpatient mental health care has been overtaken by increases in overall patient-borne mental health costs (Frank et al., 2009). Rising costs for psychiatric medications have been particularly pronounced, tripling in the decade from 1996 to 2006, with no appreciable reduction in out-of-pocket expenditures for medications over the same period (Zuvekas & Meyerhoefer, 2006). (See Figure 16-7.)

Pathways to CareNeed, Attitudes, Barriers

Figure 16-7 Growth In US Mental Health Spending, 1996–2006. Data are indexed to 1996.

Source: Adapted with permission from Frank, Goldman, & McGuire, 2009.

These escalating costs have led to serious financial barriers to care for a growing number of individuals with mental disorders who need such care (Mojtabai, 2005). According to one study of mental health treatment seeking and unmet need for care, while contact with mental health professionals increased from 29.1% to 35.5% from 1997 through 2002, the cost-related unmet need for care also rose during the same period (Mojtabai, 2005).

In recent years, the impact of cost-related barriers to care has taken on increased importance commensurate with the growth in both costs of care and out-of-pocket expenditures. In 2005–2006, individuals reporting both major depression and a need for treatment most frequently cited cost barriers as the reason for not seeking needed care (Mojtabai, 2009b). (See Figure 16-8.) The growing role of cost as a barrier to care is not unique to the United States. A study across Spain, Israel, Australia, Brazil, Russia, and the United States found that out-of-pocket costs were the most commonly reported barrier to receiving care for depression (Simon, Fleck, Lucas, & Bushnell, 2004). Although, the prevalence varied considerably from 24% in Spain to 75% in Russia.

Pathways to CareNeed, Attitudes, Barriers

Figure 16-8 Barriers to Seeking Mental Health Treatment Among Adults with Major Depression.

Source: Reprinted with permission from Mojtabai, 2009b.

The cost-related barriers to care faced by people in the United States with health coverage, while significant, are eclipsed by another, (p.457) perhaps even more pressing issue: the financial barriers facing uninsured people with mental illnesses. One-third of Americans under age 65 went without health insurance for at least part of the 2-year period from 2007 through 2008 (Baily, 2009). In most studies of mental health care use, people who are uninsured lag behind those with even the most limited public or private insurance coverage (Kataoka, Zhang, & Wells, 2002; Landerman, Burns, Swarz, Wagner, & George, 1994; McAlpine & Mechanic, 2000).

Legislative Initiatives to Address Financial Barriers to Mental Health Care

In the United States and elsewhere around the world, the past few decades have been marked by significant advances in mental health–related laws and regulations. Project Atlas (WHO, 2011) found that 71% of countries have enacted laws related to mental health in general, or in areas of welfare, disability benefits, and employment opportunities for persons with mental disorders. Still, significant global variation in access to such benefits persists. Dedicated mental health legislation is found in more than 75% of high-income countries, but in less than 40% of low-income countries. Further, the presence of mental health–related laws does not necessarily mitigate the personal financial burden associated with seeking and receiving care for a mental disorder. Worldwide out-of-pocket expenditures for mental health services remain significant, accounting for between 30% and 40% of total payments in some of the poorest parts of the world, including some African and Southeast Asian nations (WHO, 2005). While some populous countries, like India and Pakistan, make subsidized public sector care available, treatments in these settings are often rudimentary; private sector care is possible only with significant out-of-pocket supplemental payments. The integration of mental health care into publicly funded general medical health care by Canada, the United Kingdom, and other European nations has often been lauded as a way to surmount both cost barriers to mental health care and disparities between mental and physical health care coverage. Yet even in those nations, access to care remains a challenge, in part as a result of rationing and long waiting lists, leading to gradual introduction of private health care options in some countries. Access to mental (p.458) health care is also partly impacted by shortage of mental health workforce. The widespread stigma associated with mental illness possibly discourages trainees in health care professions to specialize in this area.

In the United States, a history of unsuccessful attempts to mandate parity in third-party reimbursement for the treatment of mental disorders at the federal level (Daly, 2008b) led a number of states to enact their own parity laws. The result was a pastiche of disparate statutes, many of which fell short of full parity in coverage (Daly, 2006). All that changed with enactment of the landmark Mental Health Parity and Addiction Equity Act of 2008 (Daly 2008a; Edwards, 2008; Sipkoff, 2008).

The absence of parity between mental and physical health has its genesis in the long history of health care policy, the structure of treatment programs, and research that artificially separated body and mind. When insurance for inpatient medical care first became available in the 1930s, people with serious mental illnesses most often were housed in state-run facilities where effective treatments were limited, at best. With new developments in somatic and psychological treatments in the 1940s and 1950s, the locus of mental health care gradually began to shift to outpatient settings and to incorporate patients with less severe disorders. The trend toward outpatient care picked up momentum in the late 1950s and early 1960s with the introduction of antipsychotic medications and the growth of the deinstitutionalization movement. Yet insurance coverage of mental health care lagged behind (Sharfstein, Muszynski, & Myers, 1984).

Various factors played a role in this ongoing disparity. In the era before publication of the third edition of the Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 1980), the lack of clear clinical distinctions between diagnosable mental illnesses and transient, subclinical emotional problems made determinations of the need for treatment uncertain. The greater cost elasticity of the demand for mental health services compared with that for the treatment of physical problems raised the specter of uncontainable costs of care (Wells et al., 1984). The social and institutional stigma associated with mental illness coupled with pessimism about the efficacy of treatment further contributed to the disparity. Over time, however, advocacy efforts, increased recognition that mental disorders are real, treatable illnesses, and growing demand for care led to increased—albeit not equal—insurance coverage for mental disorders. The trend toward increased mental health coverage continued through the 1970s and 1980s in state legislation (Barry, Huskamp, & Goldman, 2010). In 1977, about 87% of individuals with private health insurance coverage had some mental health coverage.

One of the earliest attempts at parity was President Kennedy’s 1961 call for mental health insurance parity for federal employees (Hustead, Sharfstein, Muszynski, Brady, & Cahill, 1985). Nevertheless, even in public insurance programs, the gap between coverage of mental and physical health care persisted. When enacted in 1965, Medicare’s Part B limited outpatient coverage for the treatment of mental disorders to a maximum of $500 a year, which, coupled with a 50% copayment, created a functional annual ceiling on outpatient treatment for mental illnesses. The potential impact of the 2008 law that finally brought mental and physical health care to coverage parity will become evident in the coming years.

Enactment of the Patient Protection and Affordable Care Act (ACA) in the United States in 2010 was another major legislative achievement in the first decade of the 21st century. While the full impact of the ACA on access to care by individuals with mental disorders will not be known for a few years, there is growing evidence that the legislation has led to an increase in the numbers of insured (Lusczakoski et al., 2016; Ali et al., 2016). Early results also suggest small increases in the use of mental health services (Saloner et al., 2017) and reduction in financial barriers to for some addiction services (Feder et al., 2017). Further, other ACA provisions, such as expanding Medicaid to the near poor and maintaining the current Child Health Insurance Plan, will also likely have a positive impact on care for individuals with severe and persistent mental illnesses and for (p.459) children with significant mental health needs (Mechanic et al., 2016). As of this writing, the fate of ACA remains uncertain due to a number of political challenges.

The Way Ahead

Mental health care seeking is a complex process that is not entirely the result of an individual’s experience of distress and impairment associated with a mental illness. Rather, a decision to seek treatment most often is the product of a combination of attitudinal, social, and structural factors. Among these, stigma and financial barriers play significant roles. Antistigma campaigns and policy initiatives to reduce financial barriers to mental health care have been at the forefront of public health initiatives to improve mental health treatment seeking at the population level and likely will continue to be so in the coming years. Other factors, such as perceived need, geographical distance, perceived benefits and risks of treatment, fear of adverse effects of psychiatric medications, and prior experience with the mental health care system all influence an individual’s decision to seek help. A person’s social network is another complicating factor in treatment-seeking behavior (Maulik, Eaton, & Bradshaw, 2010).

Undoubtedly, treatment seeking cannot be understood fully without an exploration of service delivery itself. Simply put, efforts to reduce stigma and improve financial accessibility to care are useless in settings where services and providers do not exist in the first place. In fact, in many resource-poor nations, the dearth of both providers and services is probably the most salient barrier to adequate treatment of mental disorders. Moreover, with poverty and poor physical health affecting large segments of the population, mental health remains a low priority in many of those countries. The ability to improve treatment seeking in these parts of the world demands not only increased funding but also the availability of behavioral health services at the primary care level.

Integrating mental and physical health care makes good practical and policy sense. Linking mental health care with the care of prevalent physical conditions such as HIV, malaria, tuberculosis, and hepatitis in resource-poor nations might provide an efficient solution to the problem of poor access to mental health care services (Prince et al., 2007). Integrated care of this type is equally relevant for high-income nations, where the comorbidity of chronic medical conditions with mental disorders is increasingly recognized (Felker, Yazel, & Short, 1996). The linkage of mental and physical health care—the reunification of the mind and body—can also potentially help ameliorate the stigma too often associated with the use of mental health services. Addressing the need–treatment gap in mental health care calls for a concerted effort to eradicate the attitudinal, knowledge, and financial barriers to seeking such care and to create responsive, accessible, affordable, and effective services in communities throughout the United States and around the world.

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Notes:

(1) Direct-to-consumer advertising is legal only in the United States and New Zealand at this time.