CHAPTER 2

Culture Counts: The Influence of Culture and Society on Mental Health, Mental Illness

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 back-grounds 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 pro-grams, 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 every-one 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 within a highly competitive marketplace. There are also fundamental differences in the health characteristics of patients studied in academic settings where ^{the research is conducted versus} practice settings where patients are much more heterogeneous and often disabled by more than one disorder ^{(DHHS, 1999).}

^{The gap between research and} practice is even worse for racial and ethnic minorities. Problems span both research and practice settings. A special analysis performed for this Supplement reveals that controlled clinical trials used to generate professional treatment guidelines did not conduct specific analyses for any minority group (See Appendix A for complete analysis). Controlled clinical trials offer the highest level of scientific rigor for establishing that a given treatment works.

Several professional associations and government agencies have formulated treatment guidelines or evidence-based reports on treatment outcomes for certain disorders on the basis of consistent scientific evidence, across multiple controlled clinical trials. Since 1986, nearly 10,000 participants have been included in randomized clinical trials evaluating the efficacy of treatments for bipolar disorder, major depression, schizophrenia, and attention-deficit/hyperactivity disorder. However, for nearly half of these participants (4,991), no information on race or ethnicity is available.⁴ For another 7 percent of participants (N = 656), studies only reported the designation “non-white,” without indicating a specific minority group. For the remaining 47 percent of participants (N = 4,335), Table 2-1 shows the breakdown by ethnicity. In all clinical trials reporting data on ethnicity, very few minorities were included and not a single study analyzed the efficacy of the treatment by ethnicity or race.⁵ A similar conclusion was reached by the American Psychological Association in a careful analysis of all empirically validated psychotherapies: “We know of no psychotherapy treatment research that meets basic criteria important for demonstrating treatment efficacy for ethnic minority populations...” (Chambless et al., 1996).

Table 2-1 presents data on the number of racial and ethnic minorities included, and ethnic specific analyses performed, in clinical trials for developing evidence-based treatment guidelines.

The failure to conduct ethnic-specific analyses in clinical research is a problem that must be addressed the health characteristics of patients (Chapter 7). This problem is not unique to the mental health field; it affects all areas of health research. In 1993, Congress passed legislation creating the National Institute of Health’s Office of Research on Minority Health to increase the representation of minorities in all aspects of biomedical and behavioral research (National Institutes of Health, 2001). In November 2000, the Minority Health Disparities Research and Education Act elevated the Office of Research on Minority Health to the National Center on Minority Health and Health Disparities. This gave NIH increased programmatic and budget authority for research on minority health issues and health disparities. The law also promotes more training and education of health professionals, the evaluation of data collection systems, and a national public awareness campaign.

Even though the treatment guidelines are extrapolated from largely white populations, they are, as a matter of public health prudence, the best available treatments for everyone, regardless of race or ethnicity. Yet evidence suggests that in clinical practice settings, minorities are less likely than whites to receive treatment that adheres to treatment guidelines (Chapters 3–6; see also Lehman & Steinwachs, 1998; Sclar et al., 1999; Blazer et al., 2000; Young et al., 2001). Existing treatment guidelines should be used for all people with mental disorders, regardless of ethnicity or race. But to be most effective, treatments need to be tailored and delivered appropriately for individuals according to age, gender, race, ethnicity, and culture (DHHS, 1999).

Culturally Competent Services

The last four decades have witnessed tremendous changes in mental health service delivery. The civil rights movement, the expansion of mental health services into the community, and the demographic shift toward greater population diversity led to a growing awareness of inadequacies of the mental health system in meeting the needs of ethnic and racial minorities (Rogler et al., 1987; Takeuchi & Uehara, 1996). Research documented huge variations in utilization between minorities and whites, and it began to uncover the influence of culture on mental health and mental illness (Snowden & Cheung, 1990; Sue et al., 1991). Major differences were found in some manifestations of mental disorders, idioms for communicating distress, and patterns of help-seeking. The natural outgrowth of research and public awareness was self-examination by the mental health field and the advent of consumer and family advocacy. As noted in Chapter 1, major recognition was given to the importance of culture in the assessment of mental illness with the publication of the “Outline for Culture Formulation” in DSM–IV (APA, 1994).

Another innovation was to take stock of the mental health treatment setting. This setting is arguably unique in terms of its strong reliance on language, communication, and trust between patients and providers. Key elements of therapeutic success depend on rapport and on the clinicians’ understanding of patients’ cultural identity, social supports, self-esteem, and reticence about treatment due to societal stigma. Advocates, practitioners, and policymakers, driven by widespread awareness of treatment inadequacies for minorities, began to press for a new treatment approach: the delivery of services responsive to the cultural concerns of racial and ethnic minority groups, including their languages, histories, traditions, beliefs, and values. This approach to service delivery, often referred to as cultural competence, has been promoted largely on the basis of humanistic values and intuitive sensibility rather than empirical evidence. Nevertheless, substantive data from consumer and family self-reports, ethnic match, and ethnic-specific services outcome studies suggest that tailoring services to the specific needs of these groups will improve utilization and outcomes.

Cultural competence underscores the recognition of patients’ cultures and then develops a set of skills, knowledge, and policies to deliver effective treatments (Sue & Sue, 1999). Underlying cultural competence is the conviction that services tailored to culture would be more inviting, would encourage minorities to get treatment, and would improve their outcome once in treatment. Cultural competence represents a fundamental shift in ethnic and race relations (Sue et al., 1998). The term competence places the responsibility on mental health services organizations and practitioners — most of whom are white (Peterson et al., 1996) — and challenges them to deliver culturally appropriate services. Yet the participation of consumers, families, and communities helping service systems design and carry out culturally appropriate services is also essential (Chapter 7).

Many models of cultural competence have been pro-posed. One of the most frequently cited models was developed in the context of care for children and adolescents with serious emotional disturbance (Cross et al., 1989). At the Federal level, efforts have begun to operationalize cultural competence for applied behavioral healthcare settings (CMHS, 2000). Though these and many other models have been proposed, few if any have been subject to empirical test. No empirical data are yet available as to what the key ingredients of cultural competence are and what influence, if any, they have on clinical outcomes for racial and ethnic minorities (e.g., Sue & Zane, 1987; Ramirez, 1991; Pedersen & Ivey, 1993; Ridley et al., 1994; Lopez, 1997; Szapocznik et al. 1997; Falicov, 1998; Koss-Chioino & Vargas, 1999; Sue & Sue, 1999). A common theme across models of cultural competence, however, is that they make treatment effectiveness for a culturally diverse clientele the responsibility of the system, not of the people seeking treatment.

Later chapters of this Supplement describe the findings to date in relation to each ethnic or racial group. The main point is that cultural competence is more than the sum of its parts: It is a broad-based approach to trans-form the organization and delivery of all mental health services to meet the diverse needs of all patients.

Medications and Minorities

The introductory chapter of this Supplement emphasized the overall genetic similarities across ethnic groups and noted that while there may be some genetic polymorphisms that show mean differences between groups, these variations cannot be used to distinguish one population from another. Observed group differences are out-weighed by shared genetic variation and may be correlates of lifestyle rather than genetic factors (Paabo, 2001). For example, researchers are finding some racial and ethnic differences in response to a heart medication (Exner et al., 2001) that appear to reflect both genetic and environmental factors. It is nevertheless reasonable to assume that medications for mental disorders, in the absence of data to the contrary, are as effective for racial and ethnic minority groups as they are for whites.

Therefore, this Supplement encourages people with mental illness, regardless of race or ethnicity, to take advantage of scientific advances and seek effective pharmacological treatments for mental illness. As part of the standard practice of delivering medicine, clinicians always need to individualize therapies according to the age, gender, culture, ethnicity, and other life circumstances of the patient.

There is a growing body of research on subtle genetic differences in how medications are metabolized across certain ethnic populations. Similarly, this body of research also focuses on how lifestyles that are more common to a given ethnic group affect drug metabolism. Lifestyle factors include diet, rates of smoking, alcohol consumption, and use of alternative or complementary treatments. These factors can interact with drugs to alter their safety or effectiveness.

The relatively new field known as ethnopsychopharmacology investigates ethnic variations that affect medication dosing and other aspects of pharmacology. Most research in this field has focused on gene polymorphisms (DNA variations) affecting drug metabolizing enzymes. After drugs are taken by mouth, they enter the blood and are circulated to the liver, where they are metabolized by enzymes (proteins encoded by genes). Certain genetic variations affecting the functions of these enzymes are more common to particular racial or ethnic groups. The variations can affect the pace of drug metabolism: A faster rate of metabolism leaves less drug in the circulation, whereas a slower rate allows more drug to be recirculated to other parts of the body. For example, African Americans and Asians are, on average, more likely than whites to be slow metabolizers of several medications for psychosis and depression (Lin et al., 1997). Clinicians who are unaware of these differences may inadvertently prescribe doses that are too high for minority patients by giving them the dose normally prescribed for whites. This would lead to more medication side effects, patient nonadherence, and possibly greater risk of long-term, severe side effects such as tardive dyskinesia (Lin et al., 1997; Lin & Cheung, 1999).

A key point is that this area of research looks for frequency differences across populations, rather than between individuals. For example, one research study reported on population frequencies for a polymorphism linked to the breakdown of neurotransmitters. It found the particular polymorphism in 15 to 31 percent of East Asians, compared with 7 to 40 percent of Africans, and 33 to 62 percent of Europeans and Southwest Asians (Palmatier et al., 1999). It is important to note that these differences become apparent across populations, but do not apply to an individual seeking treatment (unless the clinician has specific knowledge about that person’s genetic makeup, or genotype, or their medication blood levels). The concern about applying research regarding ethnically based differences in population frequencies of gene polymorphisms is that it will lead to stereotyping and racial profiling of individuals based on their physical appearance (Schwartz, 2001). For any individual, genetic variation in response to medications cannot be inferred from racial or ethnic group membership alone.

⁴ Researchers may have collected this information but did not report it in their published studies.

⁵ One study of attention-deficit/hyperactivity disorder (AD/HD), the NIMH Multimodal Treatment Study of AD/HD, plans to conduct ethnic-specific analyses.