Mental
Health: Culture, Race, and Ethnicity
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CHAPTER 1
Introduction
America draws strength from its cultural diversity. The contributions of racial and ethnic minorities have suffused all areas of contemporary life. Diversity has made our Nation a more vibrant and open society, ablaze in ideas, perspectives, and innovations. But the full potential of our diverse, multicultural society cannot be realized until all Americans, including racial and ethnic minorities, gain access to quality health care that meets their needs.
This Supplement to Mental Health: A Report of the Surgeon General (U.S. Department of Health and Human Services [DHHS], 1999) documents the existence of striking disparities for minorities in mental health services and the underlying knowledge base. Racial and ethnic minorities have less access to mental health services than do whites.1 They are less likely to receive needed care. When they receive care, it is more likely to be poor in quality.
These disparities have powerful significance for minority groups and for society as a whole. A major finding of this Supplement is that racial and ethnic minorities bear a greater burden from unmet mental health needs and thus suffer a greater loss to their overall health and productivity. This conclusion draws on prominent international and national findings. One is that mental disorders are highly disabling across all populations.2 According to a landmark study by the World Health Organization, the World Bank, and Harvard University, mental disorders are so disabling that, in established market economies like the United States, they rank second only to cardiovascular disease in their impact on disability (Murray & Lopez, 1996). Another important finding comes from the largest disability study ever conducted in the United States It found that one-third of disabled3 adults (ages 18–55) living in the community4 reported having a mental disorder contributing to their disability (Druss et al., 2000).
While neither of these studies addressed the disability burden for minorities relative to whites, key findings from this Supplement do: Most minority groups are less likely than whites to use services, and they receive poorer quality mental health care, despite having similar community rates of mental disorders. Similar prevalence, combined with lower utilization and poorer quality of care, means that minority communities have a higher proportion of individuals with unmet mental health needs. Further, minorities are overrepresented among the Nation’s vulnerable, high-need5 groups, such as homeless and incarcerated persons. These subpopulations have higher rates of mental disorders than do people living in the community (Koegel et al., 1988; Vernez et al., 1988; Breakey et al., 1989; Teplin, 1990). Taken together, the evidence suggests that the disability burden from unmet mental health needs is disproportionately high for racial and ethnic minorities relative to whites.
The greater disability burden to minorities is of grave concern to public health, and it has very real consequences. Ethnic and racial minorities do not yet completely share in the hope afforded by remarkable scientific advances in understanding and treating mental disorders. Because of preventable disparities in mental health services, a disproportionate number of minorities are not fully benefiting from, or contributing to, the opportunities and prosperity of our society.
More is known about the existence of disparities in mental health services — and their significance — than the reasons behind them. The most likely explanations, identified in Mental Health: A Report of the Surgeon General, are expanded upon throughout this Supplement. They trace to a mix of barriers deterring minorities from seeking treatment or operating to reduce its quality once they reach treatment.
The foremost barriers include the cost of care, societal stigma, and the fragmented organization of services. Additional barriers include clinicians’ lack of awareness of cultural issues, bias, or inability to speak the client’s language, and the client’s fear and mistrust of treatment. More broadly, disparities also stem from minorities’ historical and present day struggles with racism and discrimination, which affect their mental health and contribute to their lower economic, social, and political status.
The cumulative weight and interplay of all of these barriers, not any single one alone, is likely responsible for mental health disparities. Furthermore, these barriers operate to discernibly different degrees for different individuals and groups, depending on life circumstances, age, gender, sexual orientation, or spiritual beliefs. What becomes amply clear from this report is that there are no uniform racial or ethnic groups, white or nonwhite. Rather, each is highly heterogeneous, including a diverse mix of immigrants, refugees, and multigenerational Americans, with vastly different histories, languages, spiritual practices, demographic pat-terns, and cultures.
1 This Supplement uses the term “whites” to denote non-Hispanic white Americans.
2 Disability is measured in terms of lost years of healthy life from either disability or premature death.
3 Disability is self-reported and defined as having a level of functional impairment sufficient to restrict major life activities.
4 Most epidemiological studies using disorder-based definitions of mental illness are conducted in community household surveys. They fail to include nonhousehold members, such as persons without homes or per-sons residing in institutions such as residential treatment centers, jails, shelters, and hospitals.
5 This Supplement defines vulnerable, high-need groups as any population subgroup (such as children or adults who are homeless, incarcerated, or in foster care) which has (1) a higher risk for mental illness, (2) a higher need for mental health services, or (3) a higher risk for not receiving mental health services.
Origins and Purposes of the Supplement
This Supplement, Mental Health: Culture, Race, and Ethnicity, is an outgrowth of the 1999 report, Mental Health: A Report of the Surgeon General, the first Surgeon General’s report ever issued on mental health and mental illness. That report (hereinafter called the SGR) called attention to several overarching points that resonate throughout this Supplement (Box 1–1). Through extensive documentation of the scientific literature, the report found that mental disorders are real and disabling conditions for which there are a range of effective treatments. It found that the efficacy of mental health treatment is well documented. On the basis of these findings, the Surgeon General made a single, explicit recommendation for everyone: Seek help if you have a mental health problem or think you have symptoms of a mental disorder. This Supplement affirms this vital recommendation and the major findings in which it is firmly anchored.
Overall, the SGR provided hope for people with, or at risk for, mental disorders by presenting the evidence for what can be done to prevent and treat mental illness. It also provided hope for recovery from mental illness. In his Preface, however, the Surgeon General pointed out that all Americans do not share this hope equally:
Even more than other areas of health and medicine, the mental health field is plagued by disparities in the availability of and access to its services. These disparities are viewed readily through the lenses of racial and cultural diversity, age, and gender. (DHHS, 1999, p. vi)
Box 1–1: Mental Health: A Report of the Surgeon General
Themes of the Report
● Mental health and mental illness require the broad focus of a
public health approach.
● Mental disorders are disabling conditions.
● Mental health and mental illness are points on a continuum.
● Mind and body are inseparable.
● Stigma is a major obstacle preventing people from getting help.
Messages from the Surgeon
General
● Mental health is fundamental to health.
● Mental illnesses are real health conditions.
● The efficacy of mental health treatments is well documented.
● A range of treatments exists for most mental disorders.
<Material deleted from original source to conserve space>
Mental Health and Mental Illness
The focus of this Supplement is on mental health and mental illness in racial and ethnic minorities. Mental health and mental illness are not polar opposites, but points on a continuum. Somewhere in the middle of that continuum are “mental health problems,” which most people have experienced at some point in their lives. The experience of feeling low and dispirited in the face of a stressful job is a familiar example. The boundaries between mental health problems and milder forms of mental illness are often indistinct, just as they are in many other areas of health. Yet at the far end of the continuum lie disabling mental illnesses such as major depression, schizophrenia, and bipolar disorder. Left untreated, these disorders erase any doubt as to their devastating potential.
The SGR offered general definitions of mental health, mental illness, and mental health problems (Box 1–2). It described mental health as important for personal well-being, family and interpersonal relationships, and successful contributions to community or society. These are jeopardized by mental health problems and mental illnesses.
Figure 1-1 illustrates the U.S. Population by Race and Hispanic Origin Census
figures for 1990 and 2000, and provides projected figures for 2025.
Box 1–2
Mental Health The successful performance of mental function, resulting in productive activities, fulfilling relationships with other people, and the ability to adapt to change and to cope with adversity.
Mental Illness The term that refers collectively to all mental disorders, which are health conditions characterized by alterations in thinking, mood, or behavior (or some combination thereof) associated with distress and/or impaired functioning.
Mental Health Problems Signs and symptoms of insufficient intensity or duration to meet the criteria for any mental disorder.
Source: DHHS (1999).
While these elements of mental health may be identifiable, mental health itself is not easy to define more precisely because any definition is rooted in value judgments that may vary across individuals and cultures. According to a distinguished leader in the field of mental health, “Because values differ across cultures as well as among some groups (and indeed individuals) within a culture, the ideal of the uniformly acceptable definition of [mental health] is illusory” (Cowen, 1994).
Mental illness refers collectively to all diagnosable mental disorders. Mental disorders feature abnormalities in cognition, emotion or mood, and the highest integrative aspects of human behavior, such as social interactions. Depression, anxiety, schizophrenia, and other mental disorders are commonly found in the U.S. population, affecting about 1 in 5 adults and children (DHHS, 1999). The prevalence rates for mental disorders in U.S. adults are presented in Table 1–1.
It would be helpful to be able to construct a similar table for racial and ethnic minorities. The patterns of specific mental disorders could then be compared between each minority group and the U.S. population as a whole. Unfortunately, prevalence rates are not yet known for each mental disorder within a given minority population. The studies published thus far are not sufficiently nationally representative; however, such nationally representative studies are currently in progress. Nevertheless, this Supplement finds enough evidence from many smaller studies to conclude that the overall rate of mental illness among minorities is similar to the overall rate of about 21 percent across the U.S. population. In short, the patterns of prevalence for specific mental disorders within the overall rate may vary some-what, but the total prevalence appears to be similar across populations living in community settings.9
Mental disorders reflect abnormal functioning of the brain. They alter mental life and behavior by affecting the function of neurocircuits, the elaborate pathways through which cells in the brain (neurons) communicate with one another and with other parts of the body. The precise causes of most mental disorders are not known; the broad forces that shape them are genetic, psychological, social, and cultural, which interact in ways not yet fully understood. The modern field of integrative neuroscience strives to explain how genes and environment (broadly defined to include culture) work together in a dynamic rather than a static manner to produce mental life and behavior. The field focuses on many levels of investigation —molecular, cellular, systems, and behavior — to uncover the basis for mental health and mental illness. It does not separate nature from nurture, pitting them against one another. Rather, the field examines their interaction, the ways in which mental life and experience over time actually change the structure and function of neurocircuits. Through learning and memories that come with personal experience and socialization, neurocircuits are sculpted and shaped throughout life (Kandel, 1998; Hyman, 2000) .
Race, Ethnicity, and Culture
Any report of this magnitude needs to define the major terms it uses, all the more so when the terms are often controversial. The problem is that precise definitions of the terms “race,” “ethnicity,” and “culture” are elusive. As social concepts, they have so many different meanings, and those meanings evolve over time. With these caveats in mind, this section expands upon the general definitions of these terms adopted by the SGR.
Race
Most people think of “race” as a biological category — as a way to divide and label different groups according to a set of common inborn biological traits (e.g., skin color, or shape of eyes, nose, and face). Despite this popular view, there are no biological criteria for dividing races into distinct categories (Lewontin, 1972; Owens & King, 1999). No consistent racial groupings emerge when people are sorted by physical and biological characteristics. For example, the epicanthic eye fold that produces the so-called “Asian” eye shape is shared by the !Kung San Bushmen, members of an African nomadic tribe.
The visible physical traits associated with race, such as hair and skin color, are defined by a tiny fraction of our genes, and they do not reliably differentiate between the social categories of race. As more is learned about the 30,000 genes of the human genome, variations between groups are being identified, such as in genes that code for the enzymes active in drug metabolism (Chapter 2). While such information may prove to have clinical utility, it is important to note that these variations cannot be used to distinguish groups from one another as they are outweighed by overwhelming genetic similarities across so-called racial groups (Paabo, 2001).
The strongest, most compelling evidence to refute race as a biological category comes from genetic analysis of different racial groups. There is overwhelmingly greater genetic variation within a racial group than across racial groups. One study examined the variation in 109 DNA regions that were known to contain a high level of polymorphisms, or DNA sequence variations. Published in one of the most respected scientific journals and in agreement with earlier research, it found that 85 percent of human genetic diversity is found within a given racial group (Barbujani et al., 1997).
Table 1-1 provides one-year prevalence rates among adults 18-54 for selected
mental disorders. These figures are drawn from the Epidemiologic Catchment Area
study, the National Comorbidity Survey, and best estimates derived from the two
studies. This table was originally published in Mental Health: A Report of
the Surgeon General (DHHS, 1999)
Race is not a biological category, but it does have meaning as a social category. Different cultures classify people into racial groups according to a set of characteristics that are socially significant. The concept of race is especially potent when certain social groups are separated, treated as inferior or superior, and given differential access to power and other valued resources. This is the definition adopted by this Supplement because of its significance in understanding the mental health of racial and ethnic minority groups in American society.
Ethnicity
Ethnicity refers to a common heritage shared by a particular group (Zenner, 1996). Heritage includes similar history, language, rituals, and preferences for music and foods. Historical experiences are so pivotal to under-standing ethnic identity and current health status that they occupy the introductory portion of each chapter covering a racial or ethnic group (Chapters 3–6).
The term “race,” when defined as a social category, may overlap with ethnicity, but each has a different social meaning. For example, in many national surveys and in the 1990 U.S. census, Native Hawaiians and Vietnamese Americans are classified together in the racial category of “Asian and Pacific Islander Americans.” Native Hawaiians, however, have very little in common with Vietnamese Americans in terms of their heritage. Similarly, Caribbean blacks and Pacific Northwest Indians have different ethnicities than others within their same racial category. And, as noted earlier, because Hispanics are an ethnicity, not a race, the different Latino American ethnic subgroups such as Cubans, Dominicans, Mexicans, Puerto Ricans, and Peruvians include individuals of all races.
Culture
Culture is broadly defined as a common heritage or set of beliefs, norms, and values (DHHS, 1999). It refers to the shared, and largely learned, attributes of a group of people. Anthropologists often describe culture as a system of shared meanings. People who are placed, either by census categories or through self-identification, into the same racial or ethnic group are often assumed to share the same culture. Yet this assumption is an over-generalization because not all members grouped together in a given category will share the same culture. Many may identify with other social groups to which they feel a stronger cultural tie such as being Catholic, Texan, teenaged, or gay.
Culture is as applicable to groups of whites, such as Irish Americans or German Americans, as it is to racial and ethnic minorities. As noted, the term “culture” is also applicable to the shared values, beliefs, and norms established in common social groupings, such as adults trained in the same profession or youth who belong to a gang. The culture of clinicians, for example, is discussed in Chapter 2 to help explain interactions between patients and clinicians.
The phrase “cultural identity” refers to the culture with which someone identifies and to which he or she looks for standards of behavior (Cooper & Denner, 1998). Given the variety of ways in which to define a cultural group, many people consider themselves to have multiple cultural identities.
A key aspect of any culture is that it is dynamic: Culture continually changes and is influenced both by people’s beliefs and the demands of their environment (Lopez & Guarnaccia, 2000). Immigrants from different parts of the world arrive in the United States with their own culture but gradually begin to adapt. The term “acculturation” refers to the socialization process by which minority groups gradually learn and adopt selective elements of the dominant culture. Yet that dominant culture is itself transformed by its interaction with minority groups. And, to make matters more complex, the immigrant group may form its own culture, distinct from both its country of origin and the dominant culture. The Chinatowns of major cities in the United States often exemplify the blending of Chinese traditions and an American context.
The dominant culture for much of U.S. history has centered on the beliefs, norms, and values of white Americans of Judeo-Christian origin, but today’s America is much more multicultural in character. Still, its societal institutions, including those that educate and train mental health professionals, have been shaped by white American culture and, in a broader characterization, Western culture. That cultural legacy has left its imprint on how mental health professionals respond to patients in all facets of care, beginning with their very first encounter, the diagnostic interview.
Diagnosis and Culture
Western medicine has become a cornerstone of health worldwide because it is based on evidence from scientific research. A hallmark of Western medicine is its reliance on accurate diagnosis, the identification and classification of disease. An accurate diagnosis dictates the type of treatment and supportive care, and it sheds light on prognosis and course of illness. The diagnosis of a mental disorder is arguably more difficult than diagnoses in other areas of medicine and health because there are usually no definitive lesions (pathological abnormalities) or laboratory tests. Rather, a diagnosis depends on a pattern, or clustering, of symptoms (i.e., subjective complaints), observable signs, and behavior associated with distress or disability. Disability is impairment in one or more areas of functioning at home, work, school, or in the community (American Psychiatric Association [APA], 1994).
The formal diagnosis of a mental disorder is made by a clinician and hinges upon three components: a patient’s description of the nature, intensity, and duration of symptoms; signs from a mental status examination; and a clinician’s observation and interpretation of the patient’s behavior, including functional impairment. The final diagnosis rests on the clinician’s judgment about whether the patient’s signs, symptom patterns, and impairments of functioning meet the criteria for a given diagnosis. The American Psychiatric Association sets forth those diagnostic criteria in a standard manual known as the Diagnostic and Statistical Manual of Mental Disorders. This is the most widely used classification system, both nationally and internationally, for teaching, research, and clinical practice (Maser et al., 1991).
Mental disorders are found worldwide. Schizophrenia, bipolar disorder, panic disorder, and depression have similar symptom profiles across several continents (Weissman et al., 1994, 1996, 1997, 1998). Yet diagnosis can be extremely challenging, even to the most gifted clinicians, because the manifestations of mental disorders and other physical disorders vary with age, gender, race, ethnicity, and culture. Take some of the symptoms of depression — persistent sadness or despair, hopelessness, social withdrawal — and imagine the difficulty of communication and interpretation within a culture, much less from one culture to another. The challenge rests not only with the patient, but also with the clinician, as well as with their dynamic interactions. Patients from one culture may manifest and communicate symptoms in a way poorly understood in the culture of the clinician. Consider that words such as “depressed” and “anxious” are absent from the languages of some American Indians and Alaska Natives (Manson et al., 1985). However, this does not preclude them from having depression or anxiety.
To arrive at a diagnosis, clinicians must determine whether patients’ signs and symptoms significantly impair their functioning at home, school, work, and in their communities. This judgment is based on deviation from social norms (cultural standards of acceptable behavior) (Scadding, 1996). For example, among some cultural groups, perceiving visions or voices of religious figures might be part of normal religious experience on some occasions and aberrant social functioning on other occasions. It becomes obvious that the interaction between clinician and patient is rife with possibilities for miscommunication and misunderstanding when they are from different cultures. According to the American Psychiatric
Diagnostic assessment can be especially challenging when a clinician from one ethnic or cultural group uses the DSM–IV Classification to evaluate an individual from a different ethnic or cultural group. A clinician who is unfamiliar with the nuances of an individual’s cultural frame of reference may incorrectly judge as psychopathology those normal variations in behavior, beliefs, or experience that are particular to the individual’s culture. (APA, 1994)
The multifaceted ways that culture influences mental illness and mental health services are discussed at length in Chapter 2.
The issuance in 1994 of the fourth edition of the (DSM–IV) marked a new level of acknowledgment of the role of culture in shaping the symptom presentation, expression, and course of mental disorders. Whereas prior editions referred to such matters only in passing, this edition specifically included some discussion of cultural variations in the clinical presentation of each DSM–IV disorder, a glossary of some idioms of distress and “culture-bound syndromes” (Box 1–3), and a brief outline to assist the clinician in formulating the cultural dimensions for an individual patient (APA, 1994).
The “Outline for Cultural Formulation” in DSM–IV systematically calls attention to five distinct aspects of the cultural context of illness and their relevance to diagnosis and care. The clinician is encouraged to:
Box 1–3: Idioms of Distress and Culture-Bound Syndromes
Idioms of distress are ways in which different cultures express, experience, and cope with feelings of distress. One example is somatization, or the expression of distress through physical symptoms (Kirmayer & Young, 1998). Stomach disturbances, excessive gas, palpitations, and chest pain are common forms of somatization in Puerto Ricans, Mexican Americans, and whites (Escobar et al., 1987). Some Asian groups express more cardiopulmonary and vestibular symptoms, such as dizziness, vertigo, and blurred vision (Hsu & Folstein, 1997). In Africa and South Asia, somatization sometimes takes the form of burning hands and feet, or the experience of worms in the head or ants crawling under the skin (APA, 1994).
Culture-bound syndromes are clusters of symptoms much more common in some cultures than in others. For example, some Latino patients, especially women from the Caribbean, display ataque de nervios, a condition that includes screaming uncontrollably, attacks of crying, trembling, and verbal or physical aggression. Fainting or seizure-like episodes and suicidal gestures may sometimes accompany these symptoms (Guarnaccia et al., 1993). A culture-bound syndrome from Japan is taijin kyofusho, an intense fear that one’s body or bodily functions give offense to others. This syndrome is listed as a diagnosis in the Japanese clinical modification of the World Health Organization (WHO) International Classification of Diseases, 10th edition (1993).
Numerous other culture-bound syndromes are given in the DSM–IV “Glossary of Culture-Bound Syndromes.” Researchers have taken initial steps to examine the interrelationships between culture-bound syndromes and the diagnostic classifications of DSM–IV. For example, in a sample of Latinos seeking care for anxiety disorders, 70 percent reported having at least one ataque. Of those, over 40 percent met DSM–IV criteria for panic disorder, and nearly 25 percent met criteria for major depression (Liebowitz et al., 1994). In past research, there has been an effort to fit culture-bound syndromes into variants of DSM diagnoses. Rather than assume that DSM diagnostic entities or culture-bound syndromes are the basic patterns of illness, current investigators are interested in examining how the social, cultural, and biological contexts interact to shape illnesses and reactions to them. This is an important area of research in a field known as cultural psychiatry or ethnopsychiatry.
(1) Inquire about patients’ cultural identity to determine their ethnic or cultural reference group, language abilities, language use, and language preference,
(2) Explore possible cultural explanations of the illness, including patients’ idioms of distress, the meaning and perceived severity of their symptoms in relation to the norms of the patients’ cultural reference group, and their cur-rent preferences for, as well as past experiences with, professional and popular sources of care,
(3) Consider cultural factors related to the psychosocial environment and levels of functioning. This assessment includes culturally relevant interpretations of social stressors, available support, and levels of functioning, as well as patients’ disability,
(4) Critically examine cultural elements in the patient-clinician relationship to determine differences in culture and social status between them and how those differences affect the clinical encounter, ranging from communication to rapport and disclosure,
(5) Render an overall cultural assessment for diagnosis and care, meaning that the clinician synthesizes all of the information to determine a course of care.
The “Outline for Cultural Formulation” has been heralded as a major step forward, but with limitations related to its scope, depth, and placement in an appendix (see review in Lopez & Guarnaccia, 2000). Because major areas were omitted in the final version of the Outline, some assert that the scope is too narrow to reflect the dynamic role of culture in mental health problems and disorders (Lewis-Fernandez & Kleinman, 1995; Mezzich et al., 1999).
Other mental health experts point out that the discussion of idioms of distress is too limited and fails to capture their nuances, from their everyday meanings within a culture to their significance as symptoms of distress and their possible application to many different disorders across cultures (Kirmayer & Young, 1998; see also Chapter 6). Finally, placement of the Outline in an appendix is seen as marginalizing the role of culture, instead of appreciating its multifaceted roles across all mental disorders and cultures, including white American culture.
In recognition of the evolving nature of diagnosis, the American Psychiatric Association has an explicit revision process for DSM, which is updated roughly every 10 years to achieve greater objectivity, diagnostic precision, and diagnostic reliability in light of new empirical findings and field testing. Limitations of the current cultural formulation are expected to be addressed in future revisions of DSM. Interest in the role of culture in mental health and mental illness is consistent with the broader trend in neuroscience and genetics, integrative neuroscience. This field strives to explain the powerful effect of experience, in the broadest possible sense, on the structure and function of the brain. Leaders in the field envision that the study of genes and their interaction with the environment will yield new boundaries between mental disorders, which now are divided mostly on the basis of symptom clusters, course of illness, response to treatment, and family history (Hyman, 2000).
9 Except as noted in Chapter 2 regarding the lack of data for some ethnic groups.
The Public Health Approach
The public health field in the United States traces its origins to attempts to control infectious diseases in the late 18th century (Mullan, 1989). Its expansion during the 19th and 20th centuries was tied to the growing awareness of the importance of income, employment, lifestyle, and diet in health and disease (Porter, 1997). The first reports on public health documented higher rates of disease in impoverished, overcrowded communities. The documented effects of population growth, migration to cities, and industrialization brought to light the roles of social forces and the environment in disease causation. By the mid-19th century, public health became a new field grounded in scientific observation and stunning developments in bacteriology (Institute of Medicine [IOM], 1988).
Today the public health approach underpins the Nation’s commitment to health and medicine. This population-based approach is concerned with the health of an entire population, including its link to the physical, psychological, cultural, and social environments in which people live, work, and go to school (Chapter 2).
Public health focuses not only on traditional areas of medicine — diagnosis, treatment, and etiology or cause of an illness — but also on disease surveillance, health promotion, disease prevention, and access to and evaluation of services (Last & Wallace, 1992). The public health approach is premised on the conviction that it is inherently better to promote health and to prevent illness before it begins. Prevention also holds the promise of being more cost-effective.
Promoting Mental Health and Preventing Mental Disorders
The mental health field traditionally focused on mental illness in an attempt to serve individuals with the most severe disorders. As the field matures, however, it has begun to embrace activities that may promote mental health or prevent some mental illnesses and behavioral disorders. More specifically, it is employing the public health approach to identify problems and develop solutions for entire population groups. This approach:
- Defines the problem using surveillance processes designed to gather data that establish the nature of the problem and the trends in its incidence and prevalence;
- Identifies potential causes through epidemiological analyses that identify risk and protective factors associated with the problem;
- Designs, develops, and evaluates the effectiveness and generalizability of interventions; and
- Disseminates successful models as part of a coordinated effort to educate and reach out to the public (Hamburg, 1998; Mercy et al., 1993).
Just as mental health and mental illness are points on a continuum, so too are the public health goals of mental health promotion and mental illness prevention. Promotion refers to active steps to enhance mental health, while prevention refers to active steps to protect against the onset of mental health problems or illnesses.10
Promotion and prevention hinge on the identification of modifiable risk and protective factors, i.e., characteristics or conditions that, if present, increase or diminish, respectively, the likelihood that people will develop mental health problems or disorders (see full discussion in DHHS, 1999, p. 63–64). The modifiability of a risk or protective factor is a prerequisite for developing interventions targeted at these factors.
Risk and protective factors may be biological, psychological, or social in nature. They can operate within an individual, family, community, culture, or the larger society (Boxes 1–4, 1–5). A single risk or protective factor, in most cases, increases the probability, but is not necessarily the cause of a harmful or healthful effect. That is, one factor rarely is either necessary or sufficient to produce a given outcome. Each person is exposed to a unique constellation of risk and protective factors that act not in isolation, but rather through complex and often perplexing interactions. It is the accumulation and inter-action of risk and protective factors that contribute to mental health, mental health problems, or mental illness, not a single risk or protective factor (IOM, 1994).
Risk and protective factors not only vary across individuals, but also across age, gender, and culture. A prime goal of the SGR was to sift through risk and protective factors affecting different age groups. This Supplement focuses on risk and protective factors that disproportionately affect racial and ethnic minorities. Such risk factors include poverty, immigration, violence, racism, and discrimination, whereas protective factors include spirituality and community and family support (Chapter 2).
Several well-designed studies have demonstrated that interventions can successfully reduce the severity of certain mental disorders and enhance mental health. Some of these studies have been conducted with ethnic and racial minority samples. For example, low-income minority adults at risk for depression participated in a course on cognitive-behavioral methods adapted to their culture to control their moods. At the end of the course and at 1-year followup, these adults showed fewer symptoms of depression than did a control group (Munoz et al., 1995). For low-income, Spanish-speaking immigrant families at risk for attachment disorders, a home visitor program for mothers and infants led to more secure attachments (Lieberman et al., 1991). These findings, while quite promising, must be understood in context: At this point, the mental health field does not have sufficient knowledge of causation to prevent the onset of major mental disorders like schizophrenia and bipolar disorder (DHHS, 1999).
The recently issued report, Youth Violence: A Report of the Surgeon General, spotlighted 27 effective interventions designed to prevent youth violence (DHHS, 2001). Many of these programs target high-risk racial and ethnic minority youth. Violence in youth not only produces injuries, disability, and death, but it also often has enduring negative consequences for the mental health of victims, perpetrators, their families, and their communities. There is little doubt that our poorest neighborhoods, where a disproportionate percentage of minorities live, are fraught with violence. Preventing violence is a vital public health goal with the potential to improve the mental health and overall health
Box 1–4: Examples of Risk Factors Common to Mental Health Problems and Mental Disorders
Individual
Genetic vulnerability*
Gender
Low birth weight
Neuropsychological deficits
Language disabilities
Chronic physical illness
Below-average intelligence
Child abuse or neglect
Family
Severe marital discord
Social disadvantage
Overcrowding or large family size
Paternal criminality
Maternal mental disorder
Admission to foster care
Community or social
Violence
Poverty
Community disorganization
Inadequate schools
Racism and discrimination
* Genetic vulnerability varies by mental disorder
Sources: DHHS, 2001; DHHS, 1999; IOM, 1994
Resilience
One area of mental health promotion that has received considerable attention in recent years is resilience, or the capacity to bounce back from adversity. Increasingly researchers emphasize that resilience is by no means a fixed trait of an individual. Rather, resilient adaptation comes about as a result of an individual’s situation in interaction with protective factors in the social environment. Resilience research and programs take a “strengths-based approach” to human development and functioning: Rather than focusing on deficits and illnesses, they seek to understand and promote “self-righting tendencies” in individuals, families, and communities (Werner, 1989).
Box 1–5: Examples of Protective Factors Against Mental Health Problems and Mental Disorders
Individual
Positive temperament
Above-average intelligence
Social competence
Spirituality or religion
Family
Smaller family structure
Supportive relationships with parents
Good sibling relationships
Adequate rule setting and monitoring by parents
Community or social
Commitment to schools
Availability of health and social services
Social cohesion
Sources: DHHS, 2001; DHHS, 1999; IOM, 1994
The formal study of resilience stems from research begun in the 1970s on children of parents with schizophrenia (Garmezy, 1971). The investigator found that having a parent with schizophrenia does indeed increase someone’s risk for the illness, yet about 90 percent of the children in the study did not develop the illness. Further, most fared well in terms of peer relations, academic achievement, and other measures of mental health (Garmezy, 1971, 1991). This seminal research spawned a new line of investigations on children and other groups living in high-risk conditions such as poverty, war, and natural disasters.
Consistent with the public health approach, resilience research focuses on the promotion of protective factors. Key protective factors in racial and ethnic minority communities are supportive families, strong communities, spirituality, and religion.
Supportive Families and Communities
Researchers find that the support of other people is key to helping people cope with adversity. According to a nationally representative survey, families and friends are the first sources to which people say they will turn if they develop a mental illness (Pescosolido et al., 2000).
As early as 1983, researchers identified the following 10 characteristics of resilient African American families:
(1) Strong economic base
(2) Achievement orientation
(3) Role adaptability
(4) Spirituality
(5) Extended family bonds
(6) Racial pride
(7) Respect and love
(8) Resourcefulness
(9) Community involvement
(10) Family unity (Gary et al., 1983)
Other researchers have looked at the role of extended family members and other people in the community in helping children function well. A literature review on resilient African American children raised in inner-city neighborhoods concluded that “there was at least one adequate significant adult who was able to serve as an identification figure. In turn, the achieving youngsters seemed to hold a more positive attitude toward adults and authority figures in general” (Garmezy & Neuchterlein, 1972). In another study, African American children of low-income, divorced or separated parents were less likely to drop out of school if influenced by grandparents who provided continuity and support (Robins, et al., 1975). Similarly, for urban elementary students chronically exposed to violence, support of teachers enhanced their social competence in the classroom, as did support from peers and family. Family support was also critical in relieving the children’s anxiety (Hill & Madhere, 1996; Hill et al.,1996).
One ground-breaking ethnographic study focused on the children of Vietnamese refugees who were forced to leave Vietnam when Saigon fell in 1975. Many parents were subjected to severe trauma prior to immigration and then to the stress of resettlement in the United States. The children of these refugees showed remarkable resilience, at least in terms of school performance and academic ambitions. In an examination of Vietnamese students attending public high schools in a low-income resettlement area in New Orleans, approximately one-fourth of the students had an A average, and over half had a B average. Only 5 percent did not want to go to college. This study concluded that several factors contributed to the resilience of these children, including strong family and community ties, and “selective Americanization,” i.e., integrating the best of American values while maintaining the best Vietnamese values (Zhou & Bankston, 1998).
For racial and ethnic minority groups, supportive families and communities help arriving immigrants with practical assistance in housing, transportation, and employment. In addition, they offer enduring emotional support and a haven against racism and discrimination. They also affirm cultural identity. The contributions of family and community are so ubiquitous and expected, that they only become obvious by their absence. A recurring theme of this Supplement is the essential nature of community and family support.
Spirituality and Religion
Spirituality and religion are gaining increased research attention because of their possible link to mental health promotion and mental illness prevention. Research findings, while somewhat equivocal, suggest that various aspects of religious practice, affiliation, and belief are beneficial for mental health. The findings are strongest for a link between spirituality and certain aspects of mental health, such as subjective well-being and life satisfaction (e.g., Witter et al., 1985; Koenig et al., 1988; Ellison, 1991; Schumaker, 1992; Levin, 1994).
Research findings are somewhat contradictory about whether spirituality is associated with less psychological distress and fewer symptoms of depression in adults (e.g., Idler, 1987; Williams et al., 1991). For prevention purposes, the role of spirituality may be tied to family relationships, as demonstrated by one recent, long-term study. It examined whether the mother’s religious devotion was correlated with whether her children developed depression. The study found, over a 10-year period, that two factors were correlated with the children’s not developing depression — the mother’s religiosity and her having the same religious denomination as her children (Miller et al., 1997).
The association between religious involvement and mental health also has been studied directly in African Americans. Using data from five large national samples, researchers found that African Americans report significantly higher levels of subjective religiosity than do whites (Taylor et al., 1999). Other studies show that religious factors are strong predictors of life satisfaction for African Americans (St. George & McNamara, 1984; Thomas & Holmes, 1992). Studies also find that public and private aspects of religious involvement are associated with improved self-perceptions and self-esteem (Krause & Tran, 1989; Ellison, 1993).
Spirituality plays a prominent role in the lives of the majority of Americans, including many racial and ethnic minorities. For example, many American Indian and Alaska Native communities participate in spiritual and religious traditions, including the Native American Church, where Christian and Native beliefs coexist. Less is known about how these traditions relate to mental health. To study the relationship, researchers may need to develop new approaches and different types of out-come measures (The Fetzer Institute & National Institute on Aging, 1999).
How might spirituality and religion exert an influence on health? This provocative question has led to the development of theories to guide empirical research. Some hypotheses are that spirituality and religion influence health by adherence to health-related behaviors and lifestyles, by having an impact on marriage patterns and hence heritability, by providing social support, by psychophysiology via ritual, or by promoting healthy cognitions via belief or faith (Levin, 1996).
10 This definition technically refers to primary prevention, i.e., prevention of a disorder before its initial onset. Secondary prevention refers to the prevention of recurrences or exacerbations of already diagnosed disorders. Tertiary prevention refers to the prevention or reduction of disability caused by a disorder. There also are other ways to define comprehensive efforts at prevention (IOM, 1994).
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Need
In this Supplement, the need for mental health services is equated with prevalence, i.e., new and existing cases of mental disorders. Prevalence rates, however, are imperfect measures of need. A mental health problem may impair someone sufficiently to warrant treatment or other types of services (e.g., preventive care), while some milder forms of mental illness may not impair someone enough to warrant professional treatment. The problem is that the mental health field has not yet developed standard measures of “need for treatment” in the general population, much less for a given racial or ethnic group (DHHS, 1999). Where relevant, this Supplement also uses the diagnosis of a culture-bound syndrome as indicating a need for treatment.
This Supplement pays special attention to vulnerable, high-need populations, such as people who are homeless or incarcerated, or children in foster care. These are among the populations of most concern because they have the greatest need for services, defined by a higher risk for or prevalence of mental disorder than a relevant comparison population (Aday, 1994). Other populations, such as persons with co-occurring disorders or those living in migrant or rural communities, are also likely to be underserved or to have difficulty accessing needed treatment.
The chapters for each minority group vary some-what in terms of which high-need populations they cover. High-need populations were included in specific chapters on the basis of having overrepresentation by that particular minority group. For example, the chapter on Hispanic Americans covers refugees, whereas the chapter on American Indians and Alaska Natives covers children in foster care and people who abuse alcohol and drugs. The placements of these emphases should not be used to stereotype the group. High-need populations of all types exist in every group.
Availability
Availability of services refers to the number of providers in a given area and to whether these providers are able to offer mental health services that meet the needs of the population(s) they serve. The development of such services requires recognizing and responding to cultural concerns of racial and ethnic groups, including histories, traditions, beliefs, and value systems (U.S. Center for Mental Health Services [CMHS], 2000).
Accessibility
Access is defined as probability of use, given need for services. Because of the difficulty of operationalizing this definition, this Supplement relies on a commonly accepted measure of access, insurance status, i.e., whether or not people have private or public insurance to cover some or all of the cost of services (Brown et al., 2000). People with health insurance have greater access to services than those who do not (Newhouse, 1993). The nature of the coverage is also important — details such as coverage limits, deductibles, and the like — but few studies of minorities provide this level of specificity. Other cultural and organizational factors impede access, such as attitudes against treatment, mistrust, stigma, and fragmentation of services.
Utilization
Utilization of services is generally reported in this Supplement by rates of use of mental health services in any of the settings and sectors where they are provided. The chapters also provide some insight into more specific aspects of use such as intensity and duration of treatment, timing of care from first onset of symptoms, dropout rates, type of provider (e.g., specialist or primary care), sector, setting, and treatment modality. Many of these characteristics are described in the section on Service Settings (Chapter 2). Utilization is conceptualized as a combined function of all the previous topics — need, availability, and access.
Utilization is also reported for alternative or complementary sources of care including acupuncture, meditation, spiritual healing, herbal remedies, and/or traditional Chinese or American Indian medicine. The need to report these sources of care was prompted by the first national study of more than 16,000 people that found that about 10 percent of people reporting a mental condition used practitioner based alternative or complementary treatments. This rate of use was greater than that for people reporting a chronic medical condition (Druss & Rosenheck, 1999, 2000). The study also suggested that consumers11 tend to use these therapies for milder mental health problems and continue to use mainstream medical services for more severe mental illnesses. Studies of the overall population in primary care clinics and in clinics specializing in complementary health care note that anxiety and depression are two of the disorders for which individuals use complementary care (Elder et al., 1997; Davidson, et al., 1998; Eisenberg et al., 1998).
Appropriateness and Outcomes
Appropriateness is defined herein as receiving an accurate diagnosis or guideline-based treatment. An accurate diagnosis is one in which a careful evaluation of a patient’s symptoms show that they correspond to diagnostic criteria in the Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric Association. An appropriate treatment conforms to the treatment guidelines for that disorder published by professional mental health associations or evidence-based reports on healthcare outcomes (drawn from comprehensive syntheses and analyses of relevant scientific literature) supported by government agencies.
Outcomes of treatment ordinarily refer either to the efficacy or effectiveness of treatment. Efficacy is whether treatment works in highly controlled research settings, whereas effectiveness is whether treatment works in clinical practice settings. Common outcomes that are measured are improved mortality and morbidity — such as less suicide or a reduction in symptoms or levels of distress — and improvement in mental health. Outcomes also cover improvements in disability, work performance, and other functional measures. Outcomes are studied in relation to any type of treatment, including those that are culturally responsive.
11 Although a number of terms identify people who use or have used mental health services (e.g., mental health consumer, survivor, ex-patient, client), the terms “consumer” and “patient” will be used interchangably throughout this Supplement.
Science Base
Standards of Scientific Evidence
This Supplement draws on the best available science coming from many disciplines — mental health, health services, history, sociology, and anthropology. The statements made in this Supplement are documented by reference to studies published in the professional literature. Publications are first required to be peer-reviewed by fellow experts to ensure their quality. Quality depends on scientifically rigorous methods of data collection, analysis, and interpretation.
No single study, regardless of the quality of its design, is sufficient by itself to serve as the basis for a conclusion in this Supplement. Findings must be replicated in several studies, and findings must be consistent. The strength or degree of evidence amassed for any conclusion is referred to as the level of evidence.
Assessing the level of evidence is often difficult when findings transcend disciplinary boundaries. Distinct disciplines formulate questions differently. This, in turn, dictates different approaches to designing and conducting research, and the approach often deter-mines how researchers report their findings and conclusions. Even when approaches are similar, investigators in different disciplines frequently employ different terms to describe similar concepts. In seeking to apply scientific standards consistently across the many fields of research reviewed, this Supplement emphasizes two criteria: rigorous methods of inquiry and sufficient data to support major conclusions.
Methodological Issues in Studying Minorities
Because race and ethnicity are hard to define, many scientists discourage the use of these terms in the analysis of disease, unless there is reason to suspect, based on other sources of evidence, that a relationship exists. In general, cause and effect relationships between health status and race and ethnicity have been rare, and when they have been found, they are usually related to lifestyle or other behavioral factors that tend to correlate with racial and ethnic categories. Observed differences between racial and ethnic groups are less likely to be caused by underlying biological differences but rather by factors that co-vary with race, such as income, education, or environment. Even central tendency differences in metabolic rates are overshadowed by the complete overlap in the distribution of metabolic rates across American racial and ethnic groups. Some editors of scientific journals actively discourage presentation of racial and ethnic data unless there is a specific rationale for such analyses.
NIH insists that clinical trials to test treatments include a strongly diverse population of volunteers. This diversity is necessary to ensure that the results of the trials will apply broadly to all populations, including minority groups. According to the theory of clinical trials, it is not necessary to separately analyze subpopulations unless there are empirically based hypotheses about group differences.
Still, the study of mental health in minorities is flourishing, even though researchers face methodological hurdles that make these studies more complex, costly, and difficult to conduct than similar types of investigations in predominantly white communities.
One major consideration is related to the measurement of mental disorders. For example, even when using the DSM system to establish the criteria for different mental disorders and a standardized instrument such as the Composite International Diagnostic Interview Schedule (CIDI) to measure disorders, cultural factors affect how individuals define, evaluate, seek help for, and present their health problems to family members, friends, and service providers. Considering culture in a standardized measure of mental disorders is reliant on at least three types of equivalence: conceptual, scale, and norm. Conceptual equivalence refers to similarities in the meaning of concepts used in assessment: e.g., Do minorities and whites think of well-being, depression, or self-esteem in the same way? Scale equivalence refers to the use of standard formats in questionnaire items that are familiar to all groups. Western-educated people of all groups are familiar with responding to questions that have choices such as “strongly agree,” “agree,” and so on, or a true-false dichotomy. Recent immigrants, particularly individuals who have not been educated in the Western system, may not understand this format. Accordingly, their answers to questions using these response options may not be valid or reliable. Norm equivalence refers to the application of standard norms developed in one sample and used with another group. Because population or sub-population statistics form one standard by which we judge normal and abnormal or high and low functioning, it is important to understand whether the population on which the norms are based is similar to the study group.
Over the past decade, social scientists have used focus groups, ethnographies, and detailed interviews to help modify standardized measures to make them more equivalent for use with racial and ethnic minority groups. Although refining instruments for different racial and ethnic minorities has been made more systematic and efficient, making measures equivalent remains a time-consuming process.
For researchers who use surveys to collect data, a major methodological hurdle is the issue of sampling. Compared with interviewing all members living in a geographic area, sampling is a scientific and cost-effective means to estimate the rates of mental disorder and use of services for a particular group or community. Because ethnic and racial minority groups are relatively rare in most communities, it is difficult to recruit adequate samples for any one particular study. When a study requires large samples of a specific ethnic group, the screening time to locate respondents is quite high. For example, in a study in Los Angeles, nearly 17,000 households were approached to secure a final sample size of 1,747 Chinese American respondents (Takeuchi et al., 1998). If the study design looks for certain sub-groups (e.g., adults, children, and older adults), the cost and time for screening individuals can become even higher.
Another potential obstacle is that racial and ethnic minorities may be reluctant to participate in research studies. For some, like American Indians and African Americans, research raises past breaches of ethics and harm to individuals (Krieger, 1987). For others, like recent Asian or Latino immigrants, participation in research may be a strange concept, and recruitment may be difficult.
In addition to the difficulties of recruiting individual respondents, some racial and ethnic minority communities may resist being part of a research study. Researchers often conduct studies in minority communities because they want their work to have an impact in resolving social problems, guiding policy, or serving as a basis for programs that will improve the quality of life in the community. These investigations can provide communities with needed data to secure resources for new programs, assess interventions that may be useful in the community, or identify high-risk groups. To conduct studies, however, investigators must rely on community cooperation to help identify people and encourage participation. Frequently, an uneasy tension exists between researchers and the communities they study. Community leaders may see researchers as exploitative and divorced from real issues and real-life problems, while researchers view community leaders as compromising research methods and thereby diminishing outcomes, which would have eventually benefited the community. Such tensions can hinder the initiation of research projects in both white and nonwhite communities.
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CHAPTER 2
Culture Counts: The Influence of Culture and Society on Mental Health, Mental Illness
Introduction
To better understand what happens inside the clinical setting, this chapter looks outside. It reveals the diverse effects of culture and society on mental health, mental illness, and mental health services. This understanding is key to developing mental health services that are more responsive to the cultural and social contexts of racial and ethnic minorities.
With a seemingly endless range of subgroups and individual variations, culture is important because it bears upon what all people bring to the clinical setting. It can account for minor variations in how people communicate their symptoms and which ones they report. Some aspects of culture may also underlie culture-bound syndromes — sets of symptoms much more common in some societies than in others. More often, culture bears on whether people even seek help in the first place, what types of help they seek, what types of coping styles and social supports they have, and how much stigma they attach to mental illness. Culture also influences the meanings that people impart to their illness. Consumers of mental health services, whose cultures vary both between and within groups, naturally carry this diversity directly to the service setting.
The cultures of the clinician and the service system also factor into the clinical equation. Those cultures most visibly shape the interaction with the mental health consumer through diagnosis, treatment, and organization and financing of services. It is all too easy to lose sight of the importance of culture — until one leaves the country. Travelers from the United States, while visiting some distant frontier, may find themselves stranded in miscommunications and seemingly unorthodox treatments if they seek care for a sudden deterioration in their mental health.
Health and mental health care in the United States are embedded in Western science and medicine, which emphasize scientific inquiry and objective evidence. The self-correcting features of modern science — new methods, peer review, and openness to scrutiny through publication in professional journals — ensure that as knowledge is developed, it builds on, refines, and often replaces older theories and discoveries. The achievements of Western medicine have become the cornerstone of health care worldwide.
What follows are numerous examples of the ways in which culture influences mental health, mental illness, and mental health services. This chapter is meant to be illustrative, not exhaustive. It looks at the culture of the patient, the culture of the clinician, and the specialty in which the clinician works. With respect to the context of mental health services, the chapter deals with the organization, delivery, and financing of services, as well as with broader social issues — racism, discrimination, and poverty — which affect mental health.
Culture refers to a groups shared set of beliefs, norms, and values (Chapter 1). Because common social groupings (e.g., people who share a religion, youth who participate in the same sport, or adults trained in the same profession) have their own cultures, this chapter has separate sections on the culture of the patient as well as the culture of the clinician. Where cultural influences end and larger societal influences begin, there are contours not easily demarcated by social scientists. This chapter takes a broad view about the importance of both culture and society, yet recognizes that they overlap in ways that are difficult to disentangle through research.
What becomes clear is that culture and social contexts, while not the only determinants, shape the mental health of minorities and alter the types of mental health services they use. Cultural misunderstandings between patient and clinician, clinician bias, and the fragmentation of mental health services deter minorities from accessing and utilizing care and prevent them from receiving appropriate care. These possibilities intensify with the demographic trends highlighted at the end of the chapter.
Culture of the Patient
The culture of the patient, also known as the consumer of mental health services, influences many aspects of mental health, mental illness, and patterns of health care utilization. One important cautionary note, however, is that general statements about cultural characteristics of a given group may invite stereotyping of individuals based on their appearance or affiliation. Because there is usually more diversity within a population than there is between populations (e.g., in terms of level of acculturation, age, income, health status, and social class), information in the following sections should not be treated as stereotypes to be broadly applied to any individual member of a racial, ethnic, or cultural group.
Symptoms, Presentation, and Meaning
The symptoms of mental disorders are found worldwide. They cluster into discrete disorders that are real and disabling (U.S. Department of Health and Human Services [DHHS], 1999). As noted in Chapter 1, mental disorders are defined in the Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association [APA], 1994). Schizophrenia, bipolar disorder, panic disorder, obsessive compulsive disorder, depression, and other disorders have similar and recognizable symptoms throughout the world (Weissman et al., 1994, 1996, 1997, 1998). Culture-bound syndromes, which appear to be distinctive to certain ethnic groups, are the exception to this general statement. Research has not yet determined whether culture-bound syndromes are distinct1 from established mental disorders, are variants of them, or whether both mental disorders and culture-bound syndromes reflect different ways in which the cultural and social environment interacts with genes to shape illness (Chapter 1).
One way in which culture affects mental illness is through how patients describe (or present) their symptoms to their clinicians. There are some well recognized differences in symptom presentation across cultures. The previous chapter described ethnic variation in symptoms of somatization, the expression of distress through one or more physical (somatic) symptoms (Box 1-3). Asian patients, for example, are more likely to report their somatic symptoms, such as dizziness, while not reporting their emotional symptoms. Yet, when questioned further, they do acknowledge having emotional symptoms (Lin & Cheung, 1999). This finding supports the view that patients in different cultures tend to selectively express or present symptoms in culturally acceptable ways (Kleinman, 1977, 1988).
Cultures also vary with respect to the meaning they impart to illness, their way of making sense of the subjective experience of illness and distress (Kleinman, 1988). The meaning of an illness refers to deep-seated attitudes and beliefs a culture holds about whether an illness is “real” or “imagined,” whether it is of the body or the mind (or both), whether it warrants sympathy, how much stigma surrounds it, what might cause it, and what type of person might succumb to it. Cultural meanings of illness have real consequences in terms of whether people are motivated to seek treatment, how they cope with their symptoms, how supportive their families and communities are, where they seek help (mental health specialist, primary care provider, clergy, and/or traditional healer), the pathways they take to get services, and how well they fare in treatment. The consequences can be grave — extreme distress, disability, and possibly, suicide — when people with severe mental illness do not receive appropriate treatment.
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Causation and Prevalence
Cultural and social factors contribute to the causation of mental illness, yet that contribution varies by disorder. Mental illness is considered the product of a complex interaction among biological, psychological, social, and cultural factors. The role of any one of these major factors can be stronger or weaker depending on the disorder (DHHS, 1999).
The prevalence of schizophrenia, for example, is similar throughout the world (about 1 percent of the population), according to the International Pilot Study on Schizophrenia, which examined over 1,300 people in 10 countries (World Health Organization [WHO], 1973). International studies using similarly rigorous research methodology have extended the WHO’s findings to two other disorders: The lifetime prevalence of bipolar disorder (0.3–1.5%) and panic disorder (0.4–2.9%) were shown to be relatively consistent across parts of Asia, Europe, and North America (Weissman et al., 1994, 1996, 1997, 1998). The global consistency in symptoms and prevalence of these disorders, combined with results of family and molecular genetic studies, indicates that they have high heritability (genetic contribution to the variation of a disease in a population) (National Institute of Mental Health [NIMH], 1998). In other words, it seems that culture and societal factors play a more sub-ordinate role in causation of these disorders.
Cultural and social context weigh more heavily in causation of depression. In the same international studies cited above, prevalence rates for major depression varied from 2 to 19 percent across countries (Weissman et al., 1996). Family and molecular biology studies also indicate less heritability for major depression than for bipolar disorder and schizophrenia (NIMH, 1998). Taken together, the evidence points to social and cultural factors, including exposure to poverty and violence, playing a greater role in the onset of major depression. In this context, it is important to note that poverty, violence, and other stressful social environments are not unique to any part of the globe, nor are the symptoms and manifestations they produce. However, factors often linked to race or ethnicity, such as socioeconomic status or country of origin can increase the likelihood of exposure to these types of stressors.
Cultural and social factors have the most direct role in the causation of post-traumatic stress disorder (PTSD). PTSD is a mental disorder caused by exposure to severe trauma, such as genocide, war combat, torture, or the extreme threat of death or serious injury (APA, 1994). These traumatic experiences are associated with the later development of a longstanding pattern of symptoms accompanied by biological changes (Yehuda, 2000). Traumatic experiences are particularly common for certain populations, such as U.S. combat veterans, inner-city residents, and immigrants from countries in turmoil. Studies described in the chapters on Asian Americans and Hispanic Americans reveal alarming rates of PTSD in communities with a high degree of pre-immigration exposure to trauma (Chapters 5 and 6). For example, in some samples, up to 70 percent of refugees from Vietnam, Cambodia, and Laos met diagnostic criteria for PTSD. By contrast, studies of the U.S. population as a whole find PTSD to have a prevalence of about 4 percent (DHHS, 1999).
Suicide rates vary greatly across countries, as well as across U.S. ethnic sub-groups (Moscicki, 1995). Suicide rates among males in the United States are highest for American Indians and Alaska Natives (Kachur et al., 1995). Rates are lowest for African American women (Kachur et al., 1995). The reasons for the wide divergence in rates are not well understood, but they are likely influenced by variations in the social and cultural con-texts for each subgroup (van Heeringen et al., 2000; Ji et al., 2001).
Even though there are similarities and differences in the distribution of certain mental disorders across populations, the United States has an aggregate rate of about 20 percent of adults and children with diagnosable mental disorders (DHHS, 1999; Table 1-1). As noted in Chapter 1, this aggregate rate for the population as a whole does not have sufficient representation from most minority groups to permit comparisons between whites and other ethnic groups. The rates of mental disorder are not sufficiently studied in many smaller ethnic groups to permit firm conclusions about overall prevalence; how-ever, several epidemiological studies of ethnic populations, supported by the NIMH, are currently in progress (Chapter 7). Until more definitive findings are available,
this Supplement concludes, on the basis of smaller studies, that overall prevalence rates for mental disorders in the United States are similar across minority and majority populations. As noted in Chapter 1, this general conclusion applies to racial and ethnic minority populations living in the community, because high-need subgroups are not well captured in community household surveys.
Family Factors
Many features of family life have a bearing on mental health and mental illness. Starting with etiology, Chapter 1 highlighted that family factors can protect against, or contribute to, the risk of developing a mental illness. For example, supportive families and good sibling relationships can protect against the onset of mental illness. On the other hand, a family environment marked by severe marital discord, overcrowding, and social disadvantage can contribute to the onset of mental illness. Conditions such as child abuse, neglect, and sexual abuse also place children at risk for mental disorders and suicide (Brown et al., 1999; Dinwiddie et al., 2000).
Family risk and protective factors for mental illness vary across ethnic groups. But research has not yet reached the point of identifying whether the variation across ethnic groups is a result of that group’s culture, its social class and relationship to the broader society, or individual features of family members.
One of the most developed lines of research on family factors and mental illness deals with relapse in schizophrenia. The first studies, conducted in Great Britain, found that people with schizophrenia who returned from hospitalizations to live with family members who expressed criticism, hostility, or emotional involvement (called high expressed emotion) were more likely to relapse than were those who returned to family members who expressed lower levels of negative emotion (Leff & Vaughn, 1985; Kavanaugh, 1992; Bebbington & Kuipers, 1994; Lopez & Guarnaccia, 2000). Later studies extended this line of research to Mexican American samples. These studies reconceptualized the role of family as a dynamic interaction between patients and their families, rather than as static family characteristics (Jenkins, Kleinman, & Good, 1991; Jenkins, 1993). Using this approach, a study comparing Mexican American and white families found that different types of interactions predicted relapse. For the Mexican American families, interactions featuring distance or lack of warmth predicted relapse for the individual with schizophrenia better than interactions featuring criticism. For whites, the converse was true (Lopez et al., 1998). This example, while not necessarily generalizable to other Hispanic groups, suggests avenues by which other culturally based family differences may be related to the course of mental illness.
Coping Styles
Culture relates to how people cope with everyday problems and more extreme types of adversity. Some Asian American groups, for example, tend not to dwell on upsetting thoughts, thinking that reticence or avoidance is better than outward expression. They place a higher emphasis on suppression of affect (Hsu, 1971; Kleinman, 1977), with some tending first to rely on themselves to cope with distress (Narikiyo & Kameoka, 1992). African Americans tend to take an active approach in facing personal problems, rather than avoiding them (Broman, 1996). They are more inclined than whites to depend on handling distress on their own (Sussman et al., 1987). They also appear to rely more on spirituality to help them cope with adversity and symptoms of mental illness (Broman, 1996; Cooper-Patrick et al., 1997; Neighbors et al., 1998).
Few doubt the importance of culture in fostering different ways of coping, but research is sparse. One of the few, yet well developed lines of research on coping styles comes from comparisons of children living in Thailand versus America. Thailand’s largely Buddhist religion and culture encourage self-control, emotional restraint, and social inhibition. In a recent study, Thai children were two times more likely than American children to report reliance on covert coping methods such as “not talking back,” than on overt coping methods such as “screaming” and “running away” (McCarty et al., 1999). Other studies by these investigators established that different coping styles are associated with different types and degrees of problem behaviors in children (Weisz et al., 1997).
The studies noted here suggest that better understanding of coping styles among racial and ethnic minorities has implications for the promotion of mental health, the prevention of mental illness, and the nature and severity of mental health problems.
Treatment Seeking
It is well documented that racial and ethnic minorities in the United States are less likely than whites to seek mental health treatment, which largely accounts for their under-representation in most mental health services (Sussman et al., 1987; Kessler et al., 1996; Vega et al. 1998; Zhang et al., 1998). Treatment seeking denotes the pathways taken to reach treatment and the types of treatments sought (Rogler & Cortes, 1993). The pathways are the sequence of contacts and their duration once someone (or their family) recognizes their distress as a health problem.
Research indicates that some minority groups are more likely than whites to delay seeking treatment until symptoms are more severe (See Chapters 3 & 5). Further, racial and ethnic minorities are less inclined than whites to seek treatment from mental health specialists (Gallo et al., 1995; Chun et al., 1996; Zhang et al., 1998). Instead, studies indicate that minorities turn more often to primary care (Cooper-Patrick et al., 1999a; see later section on Primary Care). They also turn to informal sources of care such as clergy, traditional healers, and family and friends (Neighbors & Jackson, 1984; Peifer et al., 2000). In particular, American Indians and Alaska Natives often rely on traditional healers, who frequently work side-by-side with formal providers in tribal mental health programs (Chapter 4). African Americans often rely on ministers, who may play various mental health roles as counselor, diagnostician, or referral agent (Levin, 1986). The extent to which minority groups rely on informal sources in lieu of, or in addition to, formal mental health services in primary or specialty care is not well studied.
When they use mental health services, Some African Americans prefer therapists of the same race or ethnicity. This preference has encouraged the development of ethnic-specific programs that match patients to therapists of the same culture or ethnicity (Sue, 1998). Many African Americans also prefer counseling to drug therapy (Dwight-Johnson et al., 2000). Their concerns revolve around side effects, effectiveness, and addiction potential of medications (Cooper-Patrick et al., 1997).
The fundamental question raised by this line of research is: Why are many racial and ethnic minorities less inclined than whites to seek mental health treatment? Certainly, the constellation of barriers deterring whites also operates to various degrees for minorities — cost, fragmentation of services, and the societal stigma on mental illness (DHHS, 1999). But there are extra barriers deterring racial and ethnic minorities such as mistrust and limited English proficiency.
Mistrust
Mistrust was identified by the SGR as a major barrier to the receipt of mental health treatment by racial and ethnic minorities (DHHS, 1999). Mistrust is widely accepted as pervasive among minorities, yet there is surprisingly little empirical research to document it (Cooper-Patrick et al., 1999). One of the few studies on this topic looked at African Americans and whites surveyed in the early 1980s in a national study known as the Epidemiologic Catchment Area (ECA) study. This study found that African Americans with major depression were more likely to cite their fears of hospitalization and of treatment as reasons for not seeking mental health treatment. For instance, almost half of African Americans, as opposed to 20 percent of whites, reported being afraid of mental health treatment (Sussman et al., 1987).
What are the reasons behind the lack of trust? Mistrust of clinicians by minorities arises, in the broadest sense, from historical persecution and from present-day struggles with racism and discrimination. It also arises from documented abuses and perceived mistreatment, both in the past and more recently, by medical and mental health professionals (Neal-Barnett & Smith, 1997; see later section on “Clinician Bias and Stereotyping”). A recent survey conducted for the Kaiser Family Foundation (Brown et al., 1999) found that 12 percent of African Americans and 15 percent of Latinos, in comparison with 1 percent of whites, felt that a doctor or health provider judged them unfairly or treated them with disrespect because of their race or ethnic background. Even stronger ethnic differences were reported in the Commonwealth Fund Minority Health Survey: It found that 43 percent of African Americans and 28 percent of Latinos, in comparison with 5 percent of whites, felt that a health care provider treated them badly because of their race or ethnic background (LaVeist et al., 2000). Mistrust of mental health professionals is exploited by present day antipsychiatry groups that target the African American community with incendiary material about purported abuses and mistreatment (Bell, 1996).
Mistrustful attitudes also may be commonplace among other groups. While insufficiently studied, mistrust toward health care providers can be inferred from a group’s attitudes toward government-operated institutions. Immigrants and refugees from many regions of the world, including Central and South America and Southeast Asia, feel extreme mistrust of government, based on atrocities committed in their country of origin and on fear of deportation by U.S. authorities. Similarly, many American Indians and Alaska Natives are mistrustful of health care institutions; this dates back through centuries of legalized discrimination and segregation, as discussed in Chapter 4.
Stigma
Stigma was portrayed by the SGR as the “most formidable obstacle to future progress in the arena of mental illness and health” (DHHS, 1999). It refers to a cluster of negative attitudes and beliefs that motivate the general public to fear, reject, avoid, and discriminate against people with mental illness (Corrigan & Penn, 1999).
Stigma is widespread in the United States and other Western nations (Bhugra, 1989; Brockington et al., 1993) and in Asian nations (Ng, 1997). In response to societal stigma, people with mental problems internalize public attitudes and become so embarrassed or ashamed that they often conceal symptoms and fail to seek treatment (Sussman et al., 1987; Wahl, 1999). Stigma also lowers their access to resources and opportunities, such as housing and employment, and leads to diminished self-esteem and greater isolation and hopelessness (Penn & Martin, 1998; Corrigan & Penn, 1999). Stigma can also be against family members; this damages the consumer’s self-esteem and family relationships (Wahl & Harman, 1989). In some Asian cultures, stigma is so extreme that mental illness is thought to reflect poorly on family lineage and thereby diminishes marriage and economic prospects for other family members as well (Sue & Morishima, 1982; Ng, 1997).
Stigma is such a major problem that the very topic itself poses a challenge to research. Researchers have to contend with people’s reluctance to disclose attitudes often deemed socially unacceptable. How stigma varies by culture can be studied from two perspectives. One perspective is that of the targets of stigma, i.e., the people with symptoms: If they are members of a racial or ethnic minority, are they more likely than whites to experience stigma? The other perspective is that of the public in their attitudes toward people with mental illness: Are members of each racial or ethnic minority group more likely than whites to hold stigmatizing attitudes toward mental illness? The answers to these cross-cultural questions are far from definitive, but there are some interesting clues from research.
Turning first to those who experience symptoms, one of the few cross-cultural studies questioned Asian Americans living in Los Angeles. The findings were eye-opening: Only 12 percent of Asians would mention their mental health problems to a friend or relative (versus 25 percent of whites). A meager 4 percent of Asians would seek help from a psychiatrist or specialist (versus 26 per-cent of whites). And only 3 percent of Asians would seek help from a physician (versus 13 percent of whites). The study concluded that stigma was pervasive and pronounced for Asian Americans in Los Angeles (Zhang et al., 1998).
Turning to the question of public attitudes toward mental illness, the largest and most detailed study of stigma in the United States was performed in 1996 as part of the General Social Survey, a respected, nationally representative survey being conducted by the National Opinion Research Center since the 1970s. In this study, a representative sample was asked in personal interviews to respond to different vignettes depicting people with mental illness. The respondents generally viewed people with mental illness as dangerous and less competent to handle their own affairs, with their harshest judgments reserved for people with schizophrenia and substance use disorders. Interestingly, neither the ethnicity of the respondent, nor the ethnicity of the person portrayed in the vignette, seemed to influence the degree of stigma (Pescosolido et al., 1999).
By contrast, another large, nationally representative study found a different relationship between race, ethnicity, and attitudes towards patients with mental illness. Asian and Hispanic Americans saw them as more dangerous than did whites. Although having contact with individuals with mental illness helped to reduce stigma for whites, it did not for African Americans. American Indians, on the other hand, held attitudes similar to whites (Whaley, 1997).
Taken together, these results suggest that minorities hold similar, and in some cases stronger, stigmatizing attitudes toward mental illness than do whites. Societal stigma keeps minorities from seeking needed mental health care, much as it does for whites. Stigma is so potent that it not only affects the self-esteem of people with mental illness, but also that of family members. The bottom line is that stigma does deter major segments of the population, majority and minority alike, from seeking help. It bears repeating that a majority of all people with diagnosable mental disorders do not get treatment (DHHS, 1999).
Immigration
Migration, a stressful life event, can influence mental health. Often called acculturative stress, it occurs during the process of adapting to a new culture (Berry et al., 1987). Refugees who leave their homelands because of extreme threat from political forces tend to experience more trauma, more undesirable change, and less control over the events that define their exits than do voluntary immigrants (Rumbaut, 1985; Meinhardt et al., 1986).
The psychological stress associated with immigration tends to be concentrated in the first three years after arrival in the United States (Vega & Rumbaut, 1991). According to studies of Southeast Asian refugees, an initial euphoria often characterizes the first year following migration, followed by a strong disenchantment and demoralization reaction during the second year. The third year includes a gradual return to well-being and satisfaction (Rumbaut, 1985, 1989). This U-shaped curve has been observed in Cubans and Eastern Europeans (Portes & Rumbaut, 1990). Similarly, Ying (1988) finds that Chinese immigrants who have been in the United States less than one year have fewer symptoms of distress than those residing here for several years. Korean American immigrants have been found to have the highest levels of depressive symptoms in the one to two years following immigration; after three years, these symptoms remit (Hurh & Kim, 1988).
Although immigration can bring stress and subsequent psychological distress, research results do not suggest that immigration per se results in higher rates of mental disorders (e.g., Vega et al., 1998). However, as described in the chapters on Asian Americans and Latinos, the traumas experienced by adults and children from war-torn countries before and after immigrating to the United States seem to result in high rates of post-traumatic stress disorder (PTSD) among these populations.
Overall Health Status
The burden of illness in the United States is higher in racial and ethnic minorities than whites. The National Institutes of Health (NIH) recently reported that compared with the majority populations, U.S. minority populations have shorter overall life expectancies and higher rates of cardiovascular disease, cancer, infant mortality, birth defects, asthma, diabetes, stroke, adverse consequences of substance abuse, and sexually transmitted diseases (DHHS, 2000; NIH, 2000). The list of illnesses is overpoweringly long.
Disparities in health status have led to high-profile research and policy initiatives. One long-standing policy initiative is Healthy People, a comprehensive set of national health objectives issued every decade by the Department of Health and Human Services. The most recent is Healthy People 2010, which contains both well defined objectives for reducing health disparities and the means for monitoring progress (DHHS, 2000).
Higher rates of physical (somatic) disorders among racial and ethnic minorities hold significant implications for mental health. For example, minority individuals who do not have mental disorders are at higher risk for developing problems such as depression and anxiety because chronic physical illness is a risk factor for mental disorders (DHHS, 1999; see also earlier section). Moreover, individuals from racial and ethnic minority groups who already have both a mental and a physical disorder (known as comorbidity) are more likely to have their mental disorder missed or misdiagnosed, owing to competing demands on primary care providers who are preoccupied with the treatment of the somatic disorder (Borowsky, et al., 2000; Rost et al., 2000). Even if their mental disorder is recognized and treated, people with comorbid disorders are saddled by more drug interactions and side effects, given their higher usage of medications. Finally, people with comorbid disorders are much more likely to be unemployed and disabled, compared with people who have a single disability (Druss et al., 2000).
Thus, poor somatic health takes a toll on mental health. And it is probable that some of the mental health disparities described in this Supplement are linked to the poorer somatic health status of racial and ethnic minorities. The interrelationships between mind and body are inescapably evident.
1 In medicine, each disease or disorder is considered mutally exclusive from another (WHO, 1992). Each disorder is presumed, but rarely proven, to have unique pathophysiology (Scadding, 1996).
Culture of the Clinician
As noted earlier, a group of professionals can be said to have a “culture” in the sense that they have a shared set of beliefs, norms, and values. This culture is reflected in the jargon members of a group use, in the orientation and emphasis in their textbooks, and in their mindset, or way of looking at the world.
Health professionals in the United States, and the institutions in which they train and practice, are rooted in Western medicine. The culture of Western medicine, launched in ancient Greece, emphasizes the primacy of the human body in disease.2 Further, Western medicine emphasizes the acquisition of knowledge through scientific and empirical methods, which hold objectivity paramount. Through these methods, Western medicine strives to uncover universal truths about disease, its causation, diagnosis, and treatment.
Around 1900, Western medicine started to conceptualize disease as affected by social, as well as by biological phenomena. Its scope began to incorporate wider questions of income, lifestyle, diet, employment, and family structure, thereby ushering in the broader field of public health (Porter, 1997; see also Chapter 1).
Mental health professionals trace their roots to Western medicine and, more particularly, to two major European milestones — the first forms of biological psychiatry in the mid-19th century and the advent of psychotherapy (or “talk therapy”) near the end of that century (Shorter, 1997). The earliest forms of biological psychiatry primed the path for more than a century of advances in pharmacological therapy, or drug treatment, for mental illness. The original psychotherapy, known as psychoanalysis, was founded in Vienna by Sigmund Freud. While many forms of psychotherapy are available today, with vastly different orientations, all emphasize verbal communication between patient and therapist as the basis of treatment. Today's treatments for specific mental disorders also may combine pharmacological therapy and psychotherapy; this approach is known as multimodal therapy. These two types of treatment and the intellectual and scientific traditions that galvanized their development are an outgrowth of Western medicine.
To say that physicians or mental health professionals have their own culture does not detract from the universal truths discovered by their fields. Rather, it means that most clinicians share a worldview about the interrelationship among body, mind, and environment, informed by knowledge acquired through the scientific method. It also means that clinicians view symptoms, diagnoses, and treatments in a manner that sometimes diverges from their patients. “[Clinicians’] conceptions of disease and [their] responses to it unquestionably show the imprint of [a] particular culture, especially its individualist and activist therapeutic mentality,” writes sociologist of medicine Paul Starr (1982).
Because of the professional culture of the clinician, some degree of distance between clinician and patient always exists, regardless of the ethnicity of each (Burkett, 1991). Clinicians also bring to the therapeutic setting their own personal cultures (Hunt, 1995; Porter, 1997). Thus, when clinician and patient do not come from the same ethnic or cultural background, there is greater potential for cultural differences to emerge. Clinicians may be more likely to ignore symptoms that the patient deems important, or less likely to understand the patient’s fears, concerns, and needs. The clinician and the patient also may harbor different assumptions about what a clinician is supposed to do, how a patient should act, what causes the illness, and what treatments are available. For these reasons, DSM-IV exhorts clinicians to understand how their relationship with the patient is affected by cultural differences (Chapter 1).
Communication
The emphasis on verbal communication is a distinguishing feature of the mental health field. The diagnosis and treatment of mental disorders depend to a large extent on verbal communication between patient and clinician about symptoms, their nature, intensity, and impact on functioning (Chapter 1). While many mental health professionals strive to deliver treatment that is sensitive to the culture of the patient, problems can occur.
The emphasis on verbal communication yields greater potential for miscommunication when clinician and patient come from different cultural backgrounds, even if they speak the same language. Overt and subtle forms of miscommunication and misunderstanding can lead to misdiagnosis, conflicts over treatment, and poor adherence to a treatment plan. But when patient and clinician do not speak the same language, these problems intensify. The importance of cross-cultural communication in establishing trusting relationships between clinician and patient is just beginning to be explored through research in family practice (Cooper-Patrick et al., 1999) and mental health (see later section on “Culturally Competent Services”).
Primary Care
Primary care is a critical portal to mental health treatment for ethnic and racial minorities. Minorities are more likely to seek help in primary care as opposed to specialty care, and cross-cultural problems may surface in either setting (Cooper-Patrick et al., 1999). Primary care providers, particularly under the constraints of managed care, may not have the time or capacity to recognize and diagnose mental disorders or to treat them adequately, especially if patients have co-existing physical disorders (Rost et al., 2000). Some estimates suggest that about one–third to one–half of patients with mental disorders go undiagnosed in primary care settings (Higgins, 1994; Williams et al., 1999). Minority patients are among those at greatest risk of nondetection of mental disorders in primary care (Borowsky et al., 2000). Missed or incorrect diagnoses carry severe consequences if patients are given inappropriate or possibly harmful treatments, while their underlying mental disorder is left untreated.
Clinician Bias and Stereotyping
Misdiagnosis also can arise from clinician bias and stereotyping of ethnic and racial minorities. Clinicians often reflect the attitudes and discriminatory practices of their society (Whaley, 1998). This institutional racism was evident over a century ago with the establishment of a separate, completely segregated mental hospital in Virginia for African American patients (Prudhomme & Musto, 1973). While racism and discrimination have certainly diminished over time, there are traces today which are manifest in less overt medical practices concerning diagnosis, treatment, prescribing medications, and referrals (Giles et al., 1995; Shiefer, Escarce, & Schulman, 2000). One study from the mental health field found that African American youth were four times more likely than whites to be physically restrained after acting in similarly aggressive ways, suggesting that racial stereotypes of blacks as violent motivated the professional judgment to have them restrained (Bond et al., 1988). Another study found that white therapists rated a videotape of an African American client with depression more negatively than they did a white patient with identical symptoms (Jenkins-Hall & Sacco, 1991).
There is ample documentation provided in Chapter 3 that African American patients are subject to overdiagnosis of schizophrenia. African Americans are also underdiagnosed for bipolar disorder (Bell et al., 1980, 1981; Mukherjee, et al., 1983), depression, and, possibly, anxiety (Neal-Barnett & Smith, 1997; Baker & Bell, 1999; Borowsky et al., 2000). The problems extend beyond African Americans. Widely held stereotypes of Asian Americans as “problem free” may prompt clinicians to overlook their mental health problems (Takeuchi & Uehara, 1996).
The following chapters of this Supplement each cover diagnostic errors and inappropriate treatment in greater detail. They also address the extent to which each racial or ethnic minority group utilizes services or receives treatment in conformance with treatment guidelines developed from controlled clinical trials. For example, minority patients are less likely than whites to receive the best available treatments for depression and anxiety (Wang et al., 2000; Young et al., 2001).
To infer a role for bias and stereotyping by clinicians does not prove that it is actually occurring, nor does it indicate the extent to which it explains disparities in mental health services. Some of the racial and ethnic disparities described in this Supplement are likely the result of racism3 and discrimination by white clinicians; however, the limited research on this topic suggests that the issue is more complex. A large study of cardiac patients could not attribute African Americans’ lower utilization of a cardiac procedure to the race of the physician. Lower utilization by African American versus white patients was independent of whether patients were treated by white or black physicians (Chen et al., 2001). The study authors suggested the possibility that institutional factors and attitudes that were common to black and white physicians contributed to lower rates of utilization by black patients. Some have suggested that what appears to be racial bias by clinicians might instead reflect biases of their socioeconomic status or their professional culture (Epstein & Ayanian, 2001). These biases, whether intentional or unintentional, may be more powerful influences on care than the influence of the clinician’s own race or ethnicity.
2 In very general terms, most other healing systems throughout history conceived of sickness and health in the context of understanding relations of human beings to the cosmos, including planets, stars, mountains, rivers, deities, spirits, and ancestors (Porter 1997).
3 Defined in the next section of this chapter as “beliefs, attitudes, and practices that denigrate individuals or groups because of phenotypic characteristics or ethnic group affilliation...[which] can be perpetrated by institutions or individuals, acting intentionally or unintentionally.”
Culture, Society, and Mental Health Services
Every society influences mental health treatment by how it organizes, delivers, and pays for mental health services. In the United States, services are financed and delivered in vastly different ways than in other nations. That organization was shaped by and reflects a unique set of historical, economic, political, and social forces, which were summarized in the SGR (DHHS, 1999). The mental health service system is a fragmented patchwork, often referred to as the “de facto mental health system” because of its lack of a single set of organizing principles (Regier et al., 1993). While this hybrid system serves a range of functions for many people, it has not successfully addressed the problem that people with the most complex needs and the fewest financial resources often find it difficult to use. This problem is magnified for minority groups. To understand the obstacles that minorities face, this section provides background on mental health service settings, financing, and the concept of culturally competent services.
Service Settings and Sectors
Mental health services are provided by numerous types of practitioners in a diverse array of environments, variously called settings and sectors. Settings range from home and community to institutions, and sectors include public or private primary care and specialty care. This section provides a broad overview of mental health services, patterns of use, and trends in financing. Interested readers are referred to the SGR, which covers these topics in greater detail.
The burgeoning types of community services available today stand in sharp contrast to the institutional orientation of the past. Propelled by reform movements, advocacy, and the advent of managed care, today’s best mental health services extend beyond diagnosis and treatment to cover prevention and the fulfillment of broader needs, including housing and employment. Services are formal (provided by professionals) or informal (provided by lay volunteers). The most fundamental shift has been in the setting for service delivery, from the institution to the community. There are four major sectors for receiving mental health care:
(1) The specialty mental health sector is designed solely for the provision of mental health services. It refers to mental hospitals, residential treatment facilities, and psychiatric units of general hospitals. It also refers to specialized agencies and programs in the community, such as community mental health centers, day treatment pro-grams, and rehabilitation programs. Within these settings, services are furnished by specialized mental health professionals, such as psychologists, psychiatric nurses, psychiatrists, and psychiatric social workers;
(2) The general medical and primary care sector offers a comprehensive range of health care services including, but not limited to, mental health services. Primary care physicians, nurse practitioners, internists, and pediatricians are the general types of professionals who practice in a range of settings that include clinics, offices, community health centers, and hospitals;
(3) The human services sector is made up of social welfare (housing, transportation, and employment), criminal justice, educational, religious, and charitable services. These services are delivered in a full range of settings — home, community, and institutions;
(4) The voluntary support network refers to self-help groups and organizations devoted to education, communication, and support. Services provided by the voluntary support network are largely found in the community. Typically informal in nature, they often help patients and families increase knowledge, reduce feelings of isolation, obtain referrals to formal treatment, and cope with mental health problems and illnesses.
Consumers can exercise choice in treatment largely because of the range of effective treatments for mental illness and the diversity of settings and sectors in which these treatments are offered. Consumers can choose, too, between distinct treatment modalities, such as psychotherapy, counseling, pharmacotherapy (medications), or rehabilitation. For severe mental illnesses, however, all types are usually essential, as are delivery systems to integrate their services (DHHS, 1999).
Consumer preferences cannot necessarily be inferred from the types of treatment they actually use because costs, reimbursement, or availability of services — rather than preferences — may drive their utilization. For example, minority patients who wish to see mental health professionals of similar racial or ethnic backgrounds may often find it difficult or impossible, because most mental health practitioners are white. Because there are only 1.5 American Indian/Alaska Native psychiatrists per 100,000 American Indians/Alaska Natives in this country, and only 2.0 Hispanic psychiatrists per 100,000 Hispanics, the chance of an ethnic match between Native or Hispanic American patient and provider is highly unlikely (Manderscheid & Henderson, 1999).
Financing of Mental Health Services and Managed Care
Mental health services are financed from many funding streams that originate in the public and private sectors. In 1996, slightly more than half of the $69 billion in mental health spending was by public payers, including Medicaid and Medicare. The remainder came mostly from either private insurance (27%) or out-of-pocket payments (17%) by patients and their families (DHHS, 1999).
One of the most significant changes affecting both privately and publicly funded services has been the striking shift to managed care. Relatively uncommon two decades ago, managed care in some form now covers the majority of Americans, regardless of whether their care is paid for through the public or the private sector (Levit & Lundy, 1998). The term “managed care” technically refers to a variety of mechanisms for organizing, delivering, and paying for health services. It is attractive to purchasers because it holds the promise of containing costs, increasing access to care, improving coordination of care, promoting evidence-based quality care, and emphasizing prevention. Attainment of these goals for all racial and ethnic groups is difficult to verify through research because of the breathtaking pace of change in the health care marketplace. Study in this area is also challenging because claims data are closely held by private companies and thus are often unavailable to researchers, and because insurers and providers often do not collect information about ethnicity or race (Fraser, 1997).
Almost 72 percent of Americans with health insurance in 1999 were enrolled in managed behavioral health organizations for mental or addictive disorders (OPEN MINDS, 1999). Managed care has far-reaching implications for mental health services in terms of access, utilization, and quality, yet there has been only a limited body of research on its effectiveness in these areas (DHHS, 1999).
Through lower costs, managed care was expected to boost access to care, which is especially critical for racial and ethnic minorities. However, there is preliminary evidence that managed care is perceived by some racial and ethnic minorities as imposing more barriers to treatment than does fee-for-service care (Scholle & Kelleher, 1997; Provan & Carle, 2000). Yet, improved access alone will not eliminate disparities (Chapter 3). Other compelling factors curtail utilization of services by racial and ethnic minorities, and they need to be addressed to reduce the gap between minorities and whites (Chapter 7).
In terms of quality of care, the SGR noted ongoing efforts within behavioral health care to develop quality reporting systems. It also pointed out that existing incentives within and outside managed care do not encourage an emphasis on quality of care (DHHS, 1999). While the SGR concluded that there is little direct evidence of problems with quality in well implemented managed care programs, it cautioned that “the risk for more impaired populations and children remains a serious concern.”
Finally, managed care has been coupled with legislative proposals to impose parity in financing of mental health services. Intended to reverse decades of inequity, parity seeks coverage for mental health services on a par with that for somatic (physical) illness. Managed care’s potential to control costs through various management strategies that prevent overuse of services makes parity more economically feasible (DHHS, 1999). Studies described in the SGR found negligible cost increases under existing parity programs within several States. Further, several studies have shown that racial and ethnic disparities in access to health care and in treatment out-comes are reduced or eliminated under equal access systems such as the Department of Defense health care system (Optenberg et al., 1995; Taylor et al., 1997), the VA medical system for some disease conditions, and in some health maintenance organizations (Tambor et al., 1994; Martin, Shelby, & Zhang, 1995; Clancy & Franks, 1997).
Evidence-Based Treatment and Minorities
The SGR documented a comprehensive range of effective treatments for many mental disorders (DHHS, 1999). These evidence-based treatments rely on consistent scientific evidence, from controlled clinical trials, that they significantly improve patients’ outcomes (Drake et al., 2001). Despite strong and consistent evidence of efficacy, the SGR spotlighted the problem that evidence-based treatments are not being translated into community settings and are not being provided to everyone who comes in for care.
Many reasons have been cited as underlying the gap between research and practice. The most significant are practitioners’ lack of knowledge of research results, the lag time between reporting of results and their translation into the practice setting, and the cost of introducing innovative services into health systems, most of which are operating