Improving the Validity and Generalizability of Studies with Underserved U.S. Populations Expanding the Research Paradigm

Improving the Validity and Generalizability of Studies with Underserved U.S. Populations Expanding the Research Paradigm MARJORIE KAGAWA-SINGER, PhD, RN, MN

The gap in cancer incidence and mortality between ethnic minority groups and European Americans in the U.S. is significant and growing. Compared with a drop in incidence and mortality rates in the U.S. since 1992, the rates for ethnic minority groups have increased or stayed the same. A major transformation in the predominantly deductive social and behavioral research paradigm in cancer is required to reduce these disparities in cancer outcomes and improve the quality of life for ethnic minority populations with cancer. This article highlights the fundamental changes that are required to transform the prevalent paradigm for social and behavioral research in cancer care from a monocultural, Eurocentric framework to a multicultural one. Use of the expanded framework would enhance the scientific rigor, validity, generalizability, applicability, and acceptability of multicultural behavioral research. The strategies developed from such research would have a greater likelihood of success in providing optimal cancer care for underserved populations and reduce the disparities in cancer outcomes between U.S. ethnic minority populations and the white population. Examples from the cancer literature are used to illustrate each of the seven steps of the expanded paradigm. Ann Epidemiol 2000;10:S92–S103.  2000 Elsevier Science Inc. All rights reserved. Culture, Research/Standards, Prejudice, Ethnic Groups, Methodology/Research, Model, Theoretical, Cancer, Ethnic Groups/Classification

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INTRODUCTION The gap in cancer incidence and mortality between ethnic minority groups and European Americans in the U.S. is significant and growing (1). Although recent statistics indicate a sustained drop in cancer incidence and mortality rates overall in the U.S. since 1992, the rates for ethnic minority groups have increased or stayed the same (2). To reduce the disparities in cancer outcomes and improve the quality of life for individuals with cancer in the emerging majority population of the U.S., a major transformation in the primarily deductive social and behavioral research paradigms in cancer control is required. This shift in perspective would increase the scientific validity of data, and the generalizability, applicability, and acceptability of intervention programs to much broader segments of the U.S. population (3). The ultimate result would improve cancer outcomes for ethnic minority populations. This article highlights the fundamental changes that are required to transform the prevalent paradigms for social and behavioral research in cancer care from an orientation that is based

UCLA School of Public Health and Asian American Studies, Box 951772, Los Angeles, CA Address reprint requests to: Dr. M. Kagawa-Singer, UCLA School of Public Health and Asian American Studies, Box 951772, Los Angeles, CA 90095-1772. E-mail: [email protected] Received April 12, 2000; accepted August 25, 2000.  2000 Elsevier Science Inc. All rights reserved. 655 Avenue of the Americas, New York, NY 10010

on the values, methods, and views of a single culture (monocultural) to one that uses strategies more appropriate to and inclusive of a multicultural framework.

BACKGROUND The prevalent behavioral research paradigm is based in the positivist model of basic science and the monocultural, Eurocentric view of human behavior and interpersonal dynamics (4, 5), with controlled experiments as the prototype scientific design. This approach seems to translate universally for the physical world, for example the international cooperative for the Human Genome Project (6),but requires modification or “tailoring” to better fit the values and beliefs of non-Western European cultures in the behavioral world. This article proposes changes that can provide an alternative to the Eurocentric assumptions and values that underlie scientific theories of human motivation and behavior, and recommends an essential prior step to behavioral research to test the validity of proposed models for interethnic study. The monocultural, Eurocentric perspective encompasses the value of individuality and autonomy, and informs the etiquette and objectives of interpersonal relationships. The Euro-American perspective, however, is only one particular cultural perspective and is not universal. With the changing demographics in the U.S. and the increasing discrepancy in cancer outcomes by members of nonwhite ethnic groups, the Euro-American monocultural perspective may likely be 1047-2797/00/$–see front matter PII S1047-2797(00)00192-7

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Selected Abbreviations and Acronyms AAPI ⫽ Asian American and Pacific islander OMB ⫽ Office of Management and Budget NHIS ⫽ National Health Interview Survey NCI ⫽ National Cancer Institute NIH ⫽ National Institutes of Health HIV ⫽ Human Immunodeficiency Virus U.S. ⫽ United States

too restrictive to be valid or functional for cultural groups other than those for whom these theories and models were developed (3). Broader theories that encompass universal and culture-specific factors for other population groups could more accurately incorporate the diverse lifestyles within the U.S., advance the field of cancer control, and move to reduce more effectively and efficiently the unequal burden of cancer for underserved populations–those who receive less than optimal cancer education and treatment along the entire cancer care continuum (7). Epidemiology has advanced the field of cancer control with its focus on agent, host, and environmental factors that impact disease incidence, prevalence, and mortality, but the social factors are less well developed (8). The cancer research paradigm proposed in this paper requires expanding the monocultural, Eurocentric paradigm prevalent in cancer control research today by incorporating variations in basic beliefs and values that constitute different cultural perspectives or world views (9). This expanded paradigm recognizes that each belief system is holistic, rational and integral to its members’ sense of being and physical well-being. The standard European-American values of independence and self-reliance are reflected in the three basic values of the U.S. health care system (10). First, life is sacred and should be maintained at all cost. Our intensive care units, transplant services, and replacement procedures of hips, elbows, knees, heart, and kidneys are all dramatic efforts to maintain life. Second, autonomous decision-making ability should be maintained at all times. Patient informed consent forms, advance directives, and the Patients Self Determination Act all speak to this value. Third, no one should suffer. In contrast, most other cultures, such as the dominant ethos in Canada (11), function with values of collectivism, interdependence, and community. The original immigrants to Canada were quite similar to the initial immigrants to the U.S., yet they have woven a cultural fabric emphasizing their set of basic social values that are expressed in a health care system quite distinct from that of the U.S. Many ethnic minority groups in the U.S. hold values that echo Canada’s group-oriented values. For example, most groups, African Americans, Hispanics, Asian American and Pacific Islanders, and Native Americans, are sociocentric or familialbased societies. Individual life is not primary. The welfare

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of the group is primary, and decision making is by consensus. Autonomous decision making would be considered rude and selfish for those most important to them and for those who would be most affected if such decisions were not consulted. One consequence of this orientation, for example, is that the motivating message for breast cancer screening in these populations might better address caring for oneself for the welfare of the family rather than individual well-being (12). A monocultural approach in a multicultural society has three major limitations: (i) Lack of recognition and accountability to differing world views; (ii) Lack of flexibility to use more appropriate and effective means to cope with sickness and life-threatening illnesses based in those differing world views; and (iii) Lack of ability to hear different but equally valid ways of communicating these perspectives, for example, scientists from different disciplines often have difficulty understanding each other, not because of lack of knowledge per se or nonverbal compared with verbal communication, but because each defines data and reality from different perspectives (13). Inability to integrate different communication etiquette between disciplines as well as between ethnic groups results in miscommunication and misunderstandings. Use of the expanded framework would enhance the scientific rigor of multicultural behavioral research in cancer care. The expanded paradigm requires researchers to recognize that cancer incidence and outcomes vary due to fundamental differences by and within ethnic groups and that less than 5–10% of this variation is due to inherited genetic differences. Hence, approximately 95% of cancers are caused by environmental or lifestyle factors and are, therefore, amenable to change (14). If cancer outcomes are to be improved in ethnic minority populations, we must reassess the shortcomings of our current approach to research designs and intervention strategies. We must begin by acknowledging the equal validity of alternative ways of knowing and living (15). This expanded inclusive perspective also requires that valid research in underserved populations be conducted in partnership and collaboration with, not on, the populations of focus, and that culturally informed skills are required in each stage along the entire research process, from the formulation of the research question for the project or study through its implementation, interpretation and publication of results (4). This article demonstrates the application of the expanded paradigm and proposes that such application would increase the scientific validity, generalizability, applicability, and acceptability of the data produced to more diverse segments of the U.S. population. Underserved populations, or those who receive less than optimal cancer education and treatment along the entire cancer care continuum, such as women and ethnic minority populations, would have better access to optimal cancer care, from prevention to rehabilitation, and may witness a reduction in the disparities in cancer

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outcomes between U.S. ethnic minority populations and the white population.

OPERATIONALIZATION OF CONSTRUCTS: RACE, ETHNICITY, CULTURE AND RACISM This section defines and operationalizes the terms of race, ethnicity, culture, and racism. Accurate definitions of these commonly used terms comprise the fundamental basis of the expanded research paradigm. The first construct is the value laden term of race. Race The construct of race is based upon the erroneous 17th century classification of races as subspecies of homo sapien (16, 17). Subspecies do not exist within the human species, and most importantly, phenotypic characteristics are not correlated to lifestyles, personal or group moral character, or most genetic diseases. More intragroup genetic variation exists in gene pool distribution than between groups. Phenotypes are not health risk factors. Hence, “population groups” or clines, that refer to historical geographical enclaves of people who have similar lifestyles that are often environmentally or ecologically molded, are more accurate scientific terms for groups as genetic pools than the term race. Culture Culture describes the dynamic system of beliefs, values, and lifestyles (influenced by geography, technology, and commerce) that are passed from one generation to the next of particular population groups (18) These lifestyle patterns, such as diet, marriage rules, and means of livelihood, influence gene expression. The cultural system itself also changes in response to environmental shifts (e.g., mutations and evolution) and effects of cultural practices on the environment, such as pesticides. Thus culture is organic and dynamic, not static—multidimensional and not monolithic. The purpose of culture is to ensure the survival and wellbeing of its members, and thus has a significant effect on health care behaviors. Culture is a tool that its members use to manipulate the environment for food and shelter and to make cognitive and emotional sense of the chaos around them. It makes predictable and controllable, through beliefs, values, and rituals, unpredictable and inevitably uncontrollable events such as sickness and death. Culture takes the abstract ideas of a population group’s world view, and puts them into tangible, understandable, and usable beliefs and behaviors by prescribing appropriate emotional reactions as well as the behavioral responses within their perspective that communicate caring, and provide safety and social support for its members.

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The two major functions of culture are the integrative component, which is composed of beliefs and values, give an individual a sense of identity and a sense of security, and the prescriptive component that contains rules for livelihood and correct and moral behavior (15). The integrative and prescriptive functions of culture are woven into a comprehensible whole to provide an individual a sense of identity, safety, and belonging. The symbols and metaphors used in art by each culture express their beliefs regarding the place of the individual within the cosmos. The use of the human form in Western art often highlights the underlying belief that man is made in God’s image, that man is the highest form of evolution. This belief in mankind’s primary place in the cosmic order also is fundamental in the Western health care system. Western bioethics is based upon this belief of individuality and the value of autonomy. The belief in the primacy of individuality also frames how professionals are educated to provide care and how recipients of care are expected to respond within the system. This European-American belief system, as noted, is not universal. Reactions to the cancer experience are influenced by beliefs and values that affect the meaning of cancer to the patient, family, and their community. This meaning should inform the development of research frameworks and intervention strategies. The metaphor of the whole fabric of culture provides researchers with a clearer understanding of the need for relevancy and congruence in study design and implementation. For example, if an intervention plan would address a subset of beliefs about mammography screening of a traditional Navajo woman, one could view this as a particular section on a Navajo tapestry. How likely would sewing in the analogous section from a Western European tapestry, that is, a screening program designed for EuroAmerican women, be relevant or congruent with the beliefs of the Navajo woman (2)? As noted, however, cultures are neither static nor monolithic. Just as artists do, each individual within any culture designs his or her own identity. To understand a cultural group’s “behavior,” the researcher must recognize the integrity of the whole cultural pattern in conjunction with the meanings attributed to the disease, and also identify the individual designs or expressions that may characterize idiosyncratic responses, for these are the beliefs and values that influence choices in health behavior and constitute sources of meaning for the cancer experience. If the researcher is also aware of the larger macro-level forces that affect the options one has available to him or her, more realistic interpretations of behavior are more likely. For despite individual and cultural group beliefs and practices, sociopolitical forces may compound or confound barriers to optimal cancer control efforts (15, 20).

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Ethnicity

TABLE 1. Seven steps in expanded paradigm (Rogler 1992)

An ethnic group is a subcultural group within a hierarchical power structure of a multicultural society. Ethnicity is defined as one’s identification with a particular ethnic group and the group’s sense of collective identity, belonging, and continuity (21). One’s identity, however, is rarely monolithic. The influence of acculturation and assimilation are major factors creating within group variations that should also be incorporated into the ethnic identification of the group(s) studied. To assimilate means to give up one’s native ethnic beliefs and adopt those of the host culture. Most ethnic individuals do not assimilate, but instead, acculturate, which means to become fluent in the behaviors of the host culture. Cultural fluency is like fluency in another language. Such speakers become bilingual, that is, they are able to speak either language comfortably and accurately and switch to the appropriate language as necessary. Bicultural individuals are those who retain their ethnic identity, but are also able, through acculturation, to become fluent in the nuances of the dominant culture. Such individuals retain both identities and use the appropriate behaviors and language as needed. Blending of beliefs, values and behaviors also occurs and transmutes the ethnic culture from its native form to an Americanized version and vice versa (21). The constructs of ethnicity and culture are not dichotomous variables. Each is continuous and multidimensional, but the state of the art in measuring this construct is in a nascent stage (22, 23). In the meantime, if researchers and reviewers clearly state the use of the terms, how they are operationalized, how within group variation has been controlled, and finally, how the construct is used in the analyses, we will make great strides in clarifying the potential cultural differences that affect the incidence, prevalence, and outcomes of cancer in diverse populations.

1. 2. 3. 4. 5. 6. 7.

Racism Racism occurs when external group identifiers such as skin color, language, or religion are used as grounds to judge individuals and decide allocation of resources based upon those criteria in a prejudicial manner (24). Racism encompasses three elements: a struggle for power, ego aggrandizement, and resource allocation based on skin color. One group exploits another through power and coercion to the long-term detriment of the exploited. Most important to note is that ethnicity, like phenotype per se, is not a risk factor for health status (16). The risk factor of cultural group membership results more from the social and political reactions to race and ethnicity (25, 26). In the U.S., racism, and not race, is a major influence in health status (27). Health and health research exists in a sociopolitical environment. To overcome the barriers and restrictions created

Articulation of the research question Theory Development Design and Methods Measurement And Translation Implementation Interpretation Dissemination

by explicit, implicit, and often benign racism, we must become more aware of its existence and its influence.

The Expanded Paradigm The expanded paradigm for research with underserved populations requires restructuring each of seven steps of the research process. Rogler (28) devised these steps to increase cultural sensitivity in multicultural mental health research. The same efforts are applicable to cancer research with multicultural populations (Table 1). The following sections briefly describe the changes needed for each step in the expanded paradigm for cancer control research, and examples from the literature are used to demonstrate how each stage is operationalized. 1. Articulation of the Research Question As in any research, the most critical stage is to correctly identify the context in which the issues are considered to isolate the correct problem and articulate the question. This can best be assessed when members of the group play an integral part early in the planning stage. This community representation can be achieved with collaboration with researchers from the community, culturally knowledgeable researchers, key lay representatives, or any combination thereof, as long as credible community representation and substantive collaboration is evident. Ethnic researchers who are of the community as well as from the community can best represent the perspectives of the communities of interest, but it is neither a given nor essential. When the researchers have credibility in the community, the likelihood increases enormously that the correct question will be posed and that the correct template will be used to judge the relevance and appropriateness of an issue (29, 30). Cancer is a physical reality. The biologic disease is objective and measurable: but the meaning of the disease varies, and this is referred to as the illness (31). If an individual cannot change a situation, s/he invests it with meaning. That meaning usually is constructed from one’s cultural fabric or belief system. Successful programs in underserved populations are most often characterized by accurate assessment of the cultural meaning of cancer to the group of focus.

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When cancer researchers understand that the elements of culture comprise an organic, interrelated system, and these elements affect health behavior as an integrated whole, the approach to study design will be more inclusive of diverse perspectives and alternative measures. Health programs over the last 50 years have clearly demonstrated that that clinical trial protocols, intervention programs, or materials developed for the majority group are often inappropriate and ineffective in new groups (32, 33). The ecology, beliefs, and values of each new group are most accurately understood in context. The ethics of the social structure may also vary. Culturally defined concepts of good behavior, positive actions, appropriate responses, or adaptive behavior are defined within the cultural fabric of the individual, family, and community. Standard white American concepts may not translate well for members of other ethnic or cultural groups. For example, ownership of one’s own body as a married woman in traditional Asian, Hispanic, and Islamic cultures is often not a unilateral decision. The husband’s or father’s involvement may often be a prerequisite for health care. Efforts to motivate women to care for their health for themselves may not be as effective as if efforts were also directed to the welfare of the spouse and/ or family. Example: A cultural belief in fatalismo has been reported to be a barrier to cancer care for Latinos (34). Clinically, a fatalistic outlook has often been reported to be a major barrier for screening and early detection to end-of-life care for cultural groups who are less educated, less acculturated, and who have fewer resources compared with Euro-Americans (35). The possibility exists, however, that within the circumstances of the lives of these individuals, in which there are little to no resources to effect realistic change, such an attitude is a protective factor that enables them to get through their daily lives with some sense of integrity and self-respect. This outlook tends to be due more to socioeconomic circumstances than culture. Defining the problem as only cultural fails to address the larger macro-level issues that make a fatalistic attitude adaptive. The erroneous belief in a “culture of poverty” has masked the sociopolitical evolution of this attitude and results in blaming the victim. This construct assumes that people choose poverty as a way of life. If the options for better care were available to them, probably most individuals in limited circumstances would choose lifesaving measures over fatalistic resignation (33). Use of singular concepts such as fatalismo to explain cultural behavior is descriptive, but also problematic, for it tends to be too narrow to more fully explain health behavior within a social, cultural, and historical context. This approach diverts attention from the macro-level forces that may be barriers to care and reduces efforts to look for cultural strengths to promote more effective choices. Too often the static, particularistic perspective of explaining behavior with

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specific “cultural beliefs” results in studies that attempt to educate these individuals with scientific information to change their behavior within a Eurocentric system. The vantage point becomes one of incomplete explanation because the focus is on group deficiencies or weaknesses and tends to result in incomplete analysis (36, 37). 2. Theory Development Most theories that form the basis for clinical trial recruitment and retention and cancer control have been validated in standard white communities. The lack of equal effect of the strategies may be due to the inaccurate operationalization of the concept of culture and the focus on phenotypic (racial) differences, and may impact the growing discrepancy in cancer outcomes for people of color (38, 39). Example: In the Western health care system, Asians are felt to be stoic, have a higher threshold of pain, and not need as much pain medication as other groups. The result of this belief is often undermedication of these patients and perpetuation of the impression in loved ones and friends that cancer is painful and creates inevitable suffering. A comparative study of pain in six cultural groups including three Asian populations (40), reported that the psychological and functional distress felt by Asians was higher than that of Puerto Ricans and white Americans (40). The Asian cultural edict against overt expression of pain results in the wrong premise for intervention and may have far-reaching repercussions in both practice and research. Such misperceptions on the part of both professionals and the lay public may result in a self-fulfilling prophecy of cancer as fatal and accompanied by intolerable pain and suffering. Reports indicate that many groups resist early detection and screening for cancer because of the fear of diagnosis of a disease that is equated with pain, suffering, and death (12). Theoretical constructs developed in Western societies may not have universal applicability. International relations in the corporate and political worlds are well-versed in cross cultural faux pas. Cross-cultural health practictioners and researchers can learn from the lessons of these other fields. Theoretical constructs that have been developed in EuroAmerican culture cannot be assumed to have validity or relevance in other cultural groups domestically or internationally, and we can benefit by reassessing their scientific accuracy. 3. Design and Sampling Methods Development of an appropriate research design depends not only upon the questions asked by the study, but also upon how valid and applicable the theoretical framework is to the population of focus. Combining inductive and deductive research paradigms sequentially or in tandem throughout the research process is recommended when conducting research in communities about which very little scientific data

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exists (5). Such strategies initially are time consuming and costly, but the results are more valid, and program success more likely. Using converging and confirming operations or triangulation of methods and measurement instruments increases the scientific accuracy of the findings (41). The scientific review of such proposals requires flexibility and expertise in both paradigms. The criteria for “scientific rigor” as used in deductive research may be inappropriate (e.g., validity and reliability tests of standardized measures, random sampling, and informed consent processes), and therefore ineffective with particular groups at this point in time in their acculturation, and/or familiarity with and trust in the research process. More fundamental, exploratory research using inductive methods may be warranted at this time to better assess the assumptions that underlie particular design choices and sampling strategies in underserved populations. Sampling In the 1990 Census, more than 300 ethnic groups were designated and over 500 Native American tribes cited (42). In most studies, the sampling frames record ethnicity as dichotomous variables that aggregate large numbers of heterogeneous groups (such as only using the five OMB categories). Intragroup variation within each Federally designated ethnic/racial group (43) is significant, and too often is overlooked in sampling strategies (44). Scientific credibility requires disaggregating the large categories and statistical foresight to account for this variation. Example: The Asian and Pacific Islander category is made up of over 57 different nationalities with over 100 languages. Hispanic/Latinos have about 30 different nationalities. Most Hispanics/Latinos speak Spanish, but many dialects are spoken. In the African-American category, at least four groups and sometimes 16 different groups are noted. Native Americans are made up of over 500 Federally recognized tribes, each with their own language and folkways. White Americans also are extremely heterogeneous (45), and Middle Easterners are aggregated with White Americans, compounding the diversity within the “White” category. Researchers could increase the validity and generalizability of findings if they sample according to within-category differences as well as variations in levels of socioeconomic status. Acculturation and assimilation variations would also affect group characteristics and would modify the findings along with gender, age, and geographic regional differences. Recruitment of underserved populations to clinical trials and other research studies also may require strategies that challenge strict random sampling methods to successfully recruit truly representative samples in underserved and ethnic minority populations. Compared with more affluent and white populations, underserved and ethnic minority populations pose unique challenges because of low English lan-

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guage ability, and socioeconomic, political, historical, and cultural variations that reduce the applicability of common mainstream research techniques that are based on different communication styles and different attitudes toward volunteering and human research per se. Euro-American culture is structured in a way that promotes interaction through people and not with them. The person at the other end of the phone in the health care setting or sitting at the reception desk is not seen as an individual but as a legal representative of the institution who can be trusted to use the information in confidence on the respondent’s behalf. In most traditional cultures, an individual deals with another based on trust that is partly ascribed by their position due to training and credentials, e.g., physician or tribal elder, but is also earned by their demeanor, actions, and words (3, 46, 47). Trust is based on a covenant between two individuals and not on a legal contract. The relationship is a personal transaction between individual goodwill and honor and not an impersonal transaction with the service as a commodity. Reciprocation and mutual respect of the self is implicit in these interactions. With different interpersonal expectations, studies with members of traditional, sociocentric or community-focused cultures may require special training of bicultural/bilingual interviewers for surveys to build rapport in a culturally congruent manner and reduce respondent bias (48). Faceto-face interviews, snowball recruiting, or working with credible community leaders and organizations are often effective in recruiting individuals from underserved communities, regardless of language (7). Random sampling with doorto-door recruitment requires even more intensive selection and training of the interviewers than is the current practice in many survey studies (5, 49). Examples: In developing background information to document the need for cancer programs or studies in particular ethnic populations, caution is required before using current statistics on many underserved populations. The error rate for racial/ethnic classification and sampling biases in national databases for cancer risk rate, screening practices, or mortality rates for each of the ethnic groups of color is a case in point. The error rate is significant and hampers the ability of ethnic researchers or researchers of ethnic communities to credibly argue for the needs that may be anecdotally or clinically apparent. The NCI Surveillance, Epidemiology, and End Results (SEER) (50) program only samples Native Americans from the Southwest region. Yet cancer risk factors vary considerably by tribe and are significantly higher in other regions of the country (51). Athabascan Indian women are at greatest risk for breast cancer, with rates higher than that of white women compared with the significantly lower rates of breast cancer in Navajo, Hopi and Apache women of the Southwest. In California, the error rate in the Cancer Tumor Registry

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of classification for Native Americans is more than 80% (51). Nationally for Asian and Pacific Islanders, the error rate is almost 40% (52). In the 1996 National Health Interview Survey (NHIS), administered through the National Center for Health Statistics, acculturation is measured only for Spanish-speaking individuals, and the NHIS is only administered in English and Spanish. Yet 67% of the Asian American and Pacific Islander (AAPI) population is foreign born and 32% are linguistically isolated (33% for Hispanics) (53). The needs of non-English, non-Spanish speaking groups, such as AAPIs and other newer immigrant groups such as Russians and Armenians, are not assessed in such surveys. Breast cancer incidence rates for Asian-American and Pacific Islander women range from 28.5/100,000 to 106/ 100,000 compared with 113.2/100,000 for white women in the U.S. (54). When these groups are aggregated in the analysis, AAPI women show rates of approximately 73/ 100,000, and the conclusion is that AAPI women are at low risk for breast cancer. Such statistics hide the groups at higher risk. The counts themselves are problematic, however, because the accuracy of both the denominator and numerator in many instances is questionable (55). 4. Measurement and Translation A paucity of cross-culturally validated instruments exists in the behavioral field of medical research in general and even less in cancer research specifically. A large part of this situation stems from the lack of recognition that an expanded paradigm is required. The general field of mental health is about 10–15 years ahead of medical health research in identifying cross-cultural variations in health beliefs, behaviors, and outcomes and preparing culturally competent researchers, practitioners, and measurement tools (3, 56). Translation of instruments is more complex than mere translation of words. Conceptual metric and construct equivalence of meaning is essential (35, 57). The process of translating requires decentering the instrument and reestablishing validity and reliability (58). Many of the concepts taken for granted in U.S. cancer research are not conceptually equivalent in other cultural groups. For example, studies comparing suffering (59, 60), self-concept (61) social support, (62), informed consent (63, 64) autonomy (65–67) family dynamics and expectations (68), truth telling (63, 69) and quality of life (56, 70) have all been demonstrated to vary according to the cultural group studied. (See Table 2). Lack of attention to these cultural and linguistic differences can adversely impact the quality of data (71). Specific psychological states also appear to differ by ethnic group since emotions are culturally framed. Cultures have clustered different sets of emotions into definable categories that are culture specific (72, 74). If cancer researchers

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TABLE 2. Measurement and translation components Cross-cultural validity and reliability of instruments for specific populations: semantic/meaning, metric, structural (85) Focus groups/inductive, deductive Pilot testing of new instruments Translation—decentering

do not recognize these differences, salient and relevant concepts and practices may be missed entirely and erroneous diagnoses made (4, 47, 73, 74). Moreover, the relationships of the elements within the construct may differ (construct equivalence) and the weighting or salience may vary as well (metric equivalence). Examples: The Japanese language has no concept comparable to “quality of life.” Questionnaires designed in the U.S. or Western Europe to measure this concept in Japan would be misguided without first testing to see what comparable conceptual construct existed in the target culture. (75) The Western-validated and psychometrically sound questionnaire could be administered, but the validity of the results may be highly questionable (56). In a comparative study of Chinese-, Japanese-, and Anglo-American women with breast cancer, social support was found to differ among the three groups by who, when, and what form of social support was provided. Assuming that women of these three ethnic groups needed the same social support would be in error (62). Differences also exist in coping styles. What may be perceived as passive, fatalistic responses in a group by mainstream researchers or clinicians may actually be very active, positive responses of members of ethnic groups with different behavioral norms (76, 77). Adaptive coping strategies might look very different. Using a mainstream technique to intervene with an ethnic minority patient or family might actually result in alienating that individual or family from their natural support structure when they most need it. For example, several Japanese-American women reported no support from friends or extended family when they had their mastectomies (62). Usually, however, this was because their friends were not informed of the breast cancer until much later, even two years later. Only the adult members of their immediate family knew: for others, only one close friend was told. This did not appear to be maladaptive for these women, but culturally consonant. The cancer experience may have been difficult, but being able to achieve rehabilitation “on their own” appears to have been important and self-affirming for them. Such a response may have been viewed negatively by their clinicians. 5. Implementation The testing or assessment process itself as currently structured is based upon certain Euro-American assumptions

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TABLE 3. Culturally inclusive factors in protocol implementation Modes of data collection Location (e.g., Respondent’s home, researcher’s territory, e.g., clinic) paper and pencil format Interview format Telephone Individual—Face to face survey Structured Semi-structured Group Interviewer characteristics Age Gender Ethnicity Marital status Social status Educational level

about interpersonal relationships as described above. The validity and generalizability of data obtained on structured questionnaires through traditional research strategies may be compromised by this Eurocentric monocultural approach. The “how” of administration is as important as the “what” with many underserved groups (See Table 3). Interviewer characteristics influence respondent comfort. Factors to consider include: Insider/Outsider status. Should the interviewer be of the group of interest or an outsider to the group? In groups that have relatively impermeable boundaries, outsiders are sometimes able to obtain more accurate confidential information since members feel that no one within the group will know about their personal opinions or experiences or such information may be difficult to share within the group since it may be viewed as a burden or inappropriate in their roles, for instance, as female or male family leaders. On the other hand, outsiders may be viewed with suspicion. Honest discussion may only occur with an insider who has gained their trust as an intermediary for the research group. Gender. Sometimes matching gender and ethnicity is helpful, especially for those members of more traditional cultures in which discussion of some topics (such as cancer of sexual organs) is inappropriate with members of the opposite sex. For men in traditional cultures, however, discussion of sensitive topics may be more acceptable to discuss with a professional woman than a man since emotional topics are more often discussed with females than males in their own cultures. Women are sometimes more effective interviewing men on issues of dependency or vulnerability. For other groups, such as homosexual men and women, female interviewers, heterosexual or homosexual, may be better able to obtain more extensive and more accurate information than same sex interviewers, e.g., in AIDS research. This, however, is only a guideline and the personal skills as well as the training of the interviewers are the essential variables.

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Age or life circumstance of interviewer. Often having young interviewers is a barrier to effective interviewing, for example when older respondents feel the interviewer may have little ability to offer empathy. For example, an elderly individual who is dying and leaving a spouse who needs physical or emotional care may feel a young, unmarried individual would not really be able to understand the impact of the situation. Likewise, a dying mother leaving small children may feel a single young man may be able to sympathize, but she would find greater support in sharing information with a woman who also has children. The situation becomes more complex with cultural differences. For example, a very elderly traditional Arabic man with prostate cancer may feel it is totally inappropriate for a nurse to be advising him about his sex life. In this latter situation, it may not even be appropriate to be discussing any of this with the patient himself, but with a family member instead, since the patient may not know his or her diagnosis. Truth-telling. Truth-telling with members of traditional populations in which telling the diagnosis is felt to be unethical is, at the least, problematic for informed consent as well as ethical standards (63). Discussion of this topic is beyond the scope of this paper, but needs to be addressed when conducting research in vulnerable, underserved populations with cultural differences regarding practitioner and patient/ family communication. Example: Researchers who interviewed Asian Indian women about their breast screening knowledge and practices knew that the educational level of these women precluded using a structured interview. Instead, they had the women tell stories, and then extracted the data from the narratives. The interviewers knew that if they asked structured questions or too many questions, the women would be confused, feel the interviewers were not really listening, lose their trust in the interviewers and the validity of their answers would have been threatened. Flaskerud et al. (78) taught intravenous-drug-using Latina women how to use bleach to clean their needles to prevent transmission of HIV. These women learned the techniques and were able to apply them appropriately for their drug use. The researchers discovered, however, that the women were not transferring this knowledge to their injection of intramuscular drugs, such as antibiotics and vitamins, purchased illegally over the counter. The error was in the lack of knowledge of the researchers about such cultural practices and the assumption that these women would transfer the knowledge across domains. 6. Interpretation Correct interpretation of research findings requires knowledge of the cultural meaning of the construct under study. Moreover, the experience must also be placed within the ecologic circumstances of the population.

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Example: If scales have been validated within the target population conceptually, the set points for “caseness” should also be assessed (4, 79). The Center for Epidemiological Surveys-Depression Scales (CES-D) indication level for depressive symptomatology is a score of 16 as normed in the mainstream U.S. population. For other groups, however, the set point may actually be higher or lower to be accurately indicative of depression or the scale may not tap the particular cultural symptoms of depression (36). Triangulation of methods is also important, within the context of time and place. Davis (80) found that the attitudes of women in a Newfoundland fishing village toward menopause changed considerably over a ten-year period. She found that the menopausal women were much less positive about this stage of life than they had been ten years earlier and had greater anxiety about aging. In this study, the change was not caused by a change in cultural beliefs, but in their economic security. The economic structure of their society had drastically altered and their cultural frameworks for sustaining a positive sense of self and womanhood were no longer viable. Income has a significant effect on health access and utilization, but the level of income needs to be interpreted as more than individual income. Questions regarding wealth or disposable income rather than total income provide a more accurate picture (81). Adding experiential factors regarding ethnicity also may be productive, such as experiences with discrimination due to ethnicity, gender, or age. Ability to differentiate within-group variation strengthens findings, but often middle-class whites are compared with lower-class African Americans (82), or Asian Americans are aggregated as a group and compared with whites (83) Both lead to erroneous results and interpretations. Comparisons must be made after controlling for socioeconomic differences and with sufficient samples within each strata for adequate statistical power. 7. Dissemination The last step in the expanded paradigm involves sharing the results of the study with the communities participating in the research. The results are shared ownership and use of this expanded paradigm includes, making results available to the community to use for program development or, at the least, education (community involvement participatory research) (84). Participatory research strategies are essential to reach underserved women, ethnic minorities, and those in underserved populations such as chronic poverty (85–87).

SUMMARY Use of the seven steps in the expanded, culturally based paradigm for research would improve the validity, generalizability, and usefulness of cancer studies with ethnic minority

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populations. Each culture and ethnic group that exists today has developed a system of beliefs and practices to protect the health and welfare of its members. Their existence attests to the plasticity of human nature for its adaptability and creativity in designing innumerable modes of behavior to ensure well-being (88). The expanded paradigm includes rather than excludes these traditional lifestyle practices. The present monocultural paradigm uses a “deficit model” approach to other cultural groups, i.e., focusing on what is not like the Euro-American model. The multicultural paradigm presented in this paper identifies, incorporates, and supports the strengths, integrity, and protective, healthpromoting behaviors that are inherent in every cultural group, and seeks to find functional commonalities to achieve optimal outcomes. Implications The likelihood of improving cancer outcomes for underserved populations will increase dramatically as cancer researchers, review panel members, and funding agency staff become cognizant of these multiple culturally variant issues to design cancer studies and clinical protocols to reach these undeserved populations and to evaluate the quality of the design to achieve its purpose in a scientifically rigorous manner. Three changes are recommended to enable researchers to gain skill in the use of the expanded research paradigm. First, recognize that Euro-American values and assumptions frame how research is conducted in the U.S. and define standards of scientific rigor in cancer control research, most significantly, in behavioral and social science endeavors. The corporate world expressly acknowledges and effectively incorporates cultural differences into its practice through segmented or social marketing strategies (89). In this approach, the essence of the product is identified and presented or “packaged” in a way that is relevant to the particular audience. This strategy recognizes that cultural differences make a difference in people’s values and lifestyle choices, and marketers modify their message and delivery as needed to be heard. Notably, significant research on how individuals in the target communities live their lives occurs before these strategies are designed. This approach is also applicable in the study of cancer control (90). The objective is to enable individuals and communities to make lifestyle choices that will reduce the burden of cancer and improve health status and quality of life. The product is health information and service. Use of the expanded paradigm would present health information and services in a way that is acceptable, appropriate, effective, and accountable to all segments of the population, including the underserved. Epidemiology has explicitly stated its understanding of these ecologic variations and is taking specific action to increase its skill in addressing underserved and ethnic mi-

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nority populations (91). The American College of Epidemiology has clearly stated its commitment to reduce “the marked health disparities among United States racial and ethnic groups because we play a major role in framing the research questions, designing the studies, and interpreting the data that serve as the basis for understanding the phenomena, designing interventions and setting the public health agenda” (92). Second, inform and educate individuals at all levels of research programs of the needed changes—from the agency executives to established researchers themselves—so that each group can integrate these changes into their spheres of responsibility. Transformation of research programs includes staff. Orienting members at all levels of the research review process, including those who direct the identification of programmatic areas of research interest, to the new paradigm would ensure promotion of its use. These members would include project officers who respond to inquiries from researchers, staff who draft the calls, and significant numbers of representatives on review panels who would be capable of evaluating proposals for the required elements of the expanded paradigm. Third, these changes could be implemented in a measurable, evaluated, and accountable manner that would directly improve the participation of women and ethnic minorities in community research programs and clinical trials to elevate the standards of cancer control and increase their chances for more favorable disease outcomes.

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An earlier draft of this paper was prepared as a working document for the Department of Defense Consensus Panel, 1998. Special thanks to Ngina Lythcott and Rena Pasick for their suggestions on an earlier version. I also wish to thank Anh Tran, MPH, Regina Chinsio, and Thy Nguyen for their research assistance in the preparation of this manuscript.

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