CHAPTER 1

Scope and Terminology

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 inter-actions. 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 with-in 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.