Diabetes Interventions for Minority Populations

Sharon A. Brown, PhD, RN, Guest Editor

It has been my pleasure to collaborate with the authors of this Diabetes Spectrum From Research to Practice section, which focuses on the practical aspects of providing intervention programs for minority populations who bear an enormous burden of type 2 diabetes. Each group of authors represents a team of committed individuals who are attempting to fill an enormous gap in the U.S. health care system, that of providing culturally appropriate care for people from minority cultures.

We have known for years that diabetes has been and continues to be more prevalent in minorities. I have conducted four meta-analyses on diabetes-related topics, and I am keenly aware of the lack of intervention research conducted with minority populations. Following the example of a previous guest editor of Diabetes Spectrum,¹ I conducted a MedLine search on the focus of this section, using "diabetes" and "minorities" as key search terms (Figure 1).

Figure 1. MedLine search for the words "diabetes" and "minorities" in 3-to 4 year intervals from 1985 tp 1997

While the number of citations of research on minority groups reported between 1985 and 1997 has increased, the number of studies continues to be few. Therefore, the research represented in this issue and other similar studies that have been conducted during the recent past are welcome contributions.

As principal investigator of a similar study of Mexican Americans with type 2 diabetes, I have been asked by the editors of Diabetes Spectrum to add my perspective regarding a few of the major issues related to the care of minorities diagnosed with diabetes.

Type 2 diabetes is rapidly becoming one of the most prevalent health problems in the United States and has reached epidemic proportions in minority populations.^2,3 The U.S. population is increasingly multiethnic, and if current trends continue, diabetes and its complications will soon emerge as the leading cause of death for some minority groups.⁴ While researchers recently identified genetic markers significantly linked to type 2 diabetes, environmental factors, many of which are modifiable, also have been implicated: sedentary lifestyles, low socioeconomic status, access barriers to health care, dietary factors, and lack of education about healthy behaviors and how to use health care systems.^2,5-10

During the more than 30 years that I have worked with people diagnosed with type 2 diabetes (I was a child prodigy), I have met people from all walks of life—bank presidents to migrant workers—and from many ethnic backgrounds. Clearly, diabetes affects all peoples, and there are indications that we are in the midst of a growing global diabetes crisis.¹¹

To be brutally honest, however, diabetic Mexican Americans, in particular, have been considered by some clinicians to be the most "incorrigible" or "noncompliant," and over the years, I have heard nurses, dietitians, and physicians vent their frustrations in working with these individuals. It became clear to me very early in my career that for Mexican Americans, diabetes was a serious problem and one that was not addressed easily. Some in the health care professions appeared to have given up on Mexican Americans.

Mexican Americans constitute the fastest growing minority group in the United States, and the Mexican-American population in Texas represents one-fifth of the total U.S. Hispanic population.¹² Today, I and my colleagues are conducting intervention studies with diabetic Mexican Americans who reside in Starr County, a Texas-Mexico border community that has the highest diabetes-related death rate in Texas. Ninety-seven percent of the residents are Mexican American, and 50% of the Hispanic adults are affected by diabetes.^13,14

Starr County has the highest rate of unemployment in the state, the lowest personal income level, and some of the state’s poorest housing. Economically, Starr County is the most impoverished in Texas and one of the poorest in the country. Some of the subjects of the study reside in colonias, unincorporated settlements on either side of the border that are characterized by poverty, pollution, and deprivation.

From my experiences in Starr County, I am learning that we have been wrong in the past in assuming that we cannot facilitate lifestyle changes in Mexican Americans. The people and health professionals of Starr County are teaching me that the problem was not the people we were targeting with messages of how to adopt more healthy lifestyles; the problems were the message—a wrong message, sometimes even in the wrong language—and sometimes we, the messengers, who delivered health advice condescendingly and even with anger! In some communities, the overriding message has been that individuals must reject their cultural ways in order to be healthy and "compliant." For example, 10 years ago Mexican Americans from a large urban area in Texas reported being told by many health care professionals that they could not eat Mexican foods and be healthy. To my dismay, there is evidence that these insensitive and incorrect messages still are prevalent today.¹⁵

Although diabetes does not affect my family, a personal experience a few months ago reminded me of how devastating it is to be a person with a strong diabetes heritage. My husband and I employed three painters, all of whom were Mexican American, to do some home repairs. Somehow the topic of diabetes arose during conversation with José (not his real name), the man in charge. Suddenly, all work stopped, and the conversation became very serious.

José had a college degree, but the rest of the workers were not well-educated and did not speak English. However, the word diabetes stopped them in their tracks. Their fear was palpable. All three were "twenty-something," but I learned from the discussion that each one had a father, brother, uncle, cousin, and/or grandfather with diabetes and that these relatives had died in their mid-40s from some diabetes-related complication.

These personal experiences had communicated very strong messages about Mexican Americans and diabetes. Each painter, José included, expected to develop diabetes eventually and did not expect to live past 45 years of age.

I have had many similar discussions with other Mexican Americans, but this discussion was a new experience for my husband. He had never seen individuals openly express so much fear related to their health. What is the quality of life for individuals like these who must live under a constant cloud of fear and dread, while planning for a shortened life-span?

One of the primary issues affecting our Mexican-American subjects in Starr County, and one that is also reflected in this collection of papers, is the importance of and emphasis on diet across cultures. It is interesting to note that 100 years ago, diabetes did not exist in Native Americans. Now Pima Indians have one of the highest-reported diabetes prevalence rates in the world.⁹ What has changed in this population to create such a diabetes burden? As they became more acculturated, they lessened their intake of cultural foods and replaced them with junk food and other dietary choices typically involving more fried foods and fewer fruits. (See the article in this issue by Mayer, Brown, and Kelly [p. 141] regarding the diets of Alaska Natives.)

Some of us who provide diabetes care have believed and taught the myth that healthy foods cost more and that poorer people, regardless of their ethnic background, could not afford to eat a healthy diet. But recent research conducted by Baylor University researchers found that changing to a:

varied diet, including five daily servings of fruits and vegetables, a high level of fiber, no more than 30% of calories from fat, and a moderate amount of protein, would in fact . . . increase a low-income family’s weekly food budget by only $0.22 . . .¹⁶

It seems to me that we will be much more effective if we determine what individuals are going to eat, regardless of ethnic background, and then help them prepare their favorite foods in a more healthful manner. This will be much more successful than prescribing a laundry list of "do’s and don’ts" that no one can follow. After all:

nonadherence [to dietary guidelines] is not a personality defect, nor is it uncommon. Relatively few Americans meet the guidelines, and most Americans live in a ‘toxic’ environment full of unhealthy foods. Intervention programs that do not take account of these facts will not succeed.¹⁶

Recent research on the concept of integration has provided insight into how people with diabetes incorporated into their daily living the diabetes-related recommendations, such as those pertaining to dietary choices, that they received from health care professionals.¹⁷ Nine experts with long-standing type 1 diabetes reported that they commonly made decisions about their diabetes that contradicted prescribed recommendations.

This resistance was neither overt noncompliance nor denial but derived from a perception that recommendations were neither helpful nor realistic. Individuals proceeded through three stages: 1) following recommendations, 2) becoming angry with trying to follow incorrect or unrealistic recommendations, and 3) finally attaining a middle ground of following some recommendations but altering others to make them useful.

Past strategies for many minority groups have involved unrealistic and inappropriate recommendations, some against cultural norms and some even in a language that was not understandable—English plus complicated medical jargon.

Another important aspect of work with minority populations is the critical nature of developing close linkages with the community at which the diabetes program efforts are targeted. Authors of the papers in this issue (Chipkin and deGroot [p. 149], Fujimoto [p. 161], Gilliland and associates [p. 166], and Osei [p. 175]) speak to the importance of developing close communication and obtaining support from community leaders by involving them on advisory boards, as members of research teams, and as community workers.

In Starr County, we have used similar strategies to foster community support. We have employed the "train the trainer" model, that is, to have bilingual Mexican-American nurses and dietitians from the community trained to provide the intervention. This approach was used to overcome some of the language and cultural barriers that might interfere with program success. And we have employed local residents as community lay workers to offset the limited number of community nurses and dietitians that were available for the intervention program.

Use of community lay workers is common in community-based programs, particularly in regions of the country where there are inadequate numbers of health professionals. Many programs have had successful experiences with community lay workers.

However, in our Starr County experience, our original intent to employ community workers to conduct support-group sessions was not acceptable to some individuals. Participants preferred to have a nurse or dietitian—a perceived authority figure—directing each session. Consequently, our community workers, instead of leading sessions, managed preparations for group sessions associated with the intervention (arranged locations, contacted patients and their families weekly, organized equipment/supplies, provided transportation when necessary, assisted dietitians with food preparation, and so forth).

As county residents, each had knowledge of and relationships with diabetic people and their families and served as an important link to the local Mexican-American community. They were local, bilingual residents who had a high school education and were licensed to drive, and we preferred people diagnosed with type 2 diabetes.

Researchers and diabetes program directors should assess their community before using community lay workers to determine if these workers will be accepted. While use of community lay workers is a common model, we cannot assume that it is the most effective model for all communities. Further, using community workers is not the only way to foster community linkages, and as long as we rely on community lay workers, particularly as substitutes for nurses and dietitians, we may not take the necessary steps to correct the maldistribution of healthcare professionals that still remains in some communities.

A question that I am asked frequently is how we operationally define "cultural sensitivity" in our Texas border project. This seems to be a simple question, but it is not answered easily. And it is interesting to note how the authors of these papers on minority populations describe their "culturally appropriate," "culturally sensitive," or "culturally competent" approaches. In general, these approaches reflect the ethnic beliefs, customs, food patterns, language, and health care practices of the targeted community. We also are advised to accept one’s own ethnocentrism and rely on the community as a resource. Operationalizing these suggestions is difficult. A few examples of our experiences in Starr County will demonstrate my point.

We have attempted to operationalize the characteristics of a culturally appropriate approach. All communication was provided in the preferred language, most often "border Spanish," by bilingual nurses, dietitians, community workers, and research office staff.

"Border Spanish" refers to a blend of English and Spanish, and individuals switch back and forth between languages to select words with which they are most familiar. Also, certain idioms may be used by residents that differentiate Spanish of this area from other predominantly Hispanic areas of the country.

Translation of program materials and study questionnaires has been an ongoing and continually difficult process, not a simple word-for-word, forward-backward translation procedure. Numerous bilingual individuals—professional translators, experienced research staff, and Starr County residents—reviewed all materials for accuracy. Each time, revisions were made in the Spanish terms that were used. Different connotations of concepts common in English but not common in Spanish and idioms characteristic of border Spanish greatly complicated translation. The least useful translation was obtained from professional translators, despite the fact that these individuals were familiar with border Spanish idioms. It became clear that each translator had specific opinions and biases regarding the connotations that should be conveyed when translating English words into Spanish.¹⁸

A humorous situation related to translation occurred early in the project and highlighted the difficulties that the language differences posed. We had spent considerable time obtaining an accurate translation of the consent form to be used in the study. We used professional translators, bilingual English teachers from Starr County schools, bilingual researchers and staff with experience working with diabetic Starr County residents, and graduate students who recently moved from the Texas-Mexico border area. Each individual reviewed the translated consent form for accuracy of words and meaning.

One phrase that was problematic was "support group." No one seemed to know the correct Spanish words—this was not a commonly used phrase in this community, and none of our Spanish dictionaries provided us with any guidance. After much consultation, five bilingual individuals from the community agreed that the correct translation, as well as the correct spelling, was "el grupo de apollo," directly translated as "the group of support."

Several subjects were enrolled with the consent forms containing this language before a bilingual research assistant directed my attention to the correct translation, "el grupo de apoyo." The pronunciation was the same, but the spelling of "apollo" versus "apoyo" made a big difference in meaning. "Pollo" means "chicken" and "apoyo" means "support." So in essence, we had enrolled several subjects into "chicken groups." (We made sure that to be consistent with our consent forms, we used chicken in some of our food demonstrations!)

In addition to addressing language issues, we attempted to overcome other barriers. We provided the program in accessible sites, as recommended for such projects. We have used churches, schools, adult daycare centers, rural health clinics—any site in the community that would be close to the people we were trying to reach. Initially, I wrongly believed that participants would be Catholic—perhaps an ethnocentric bias on my part—so the local Catholic Parish Hall was designated as a main study site. But, we quickly learned that some of the participants attended the Mexican Baptist or the Mexican Methodist churches, so we included these sites, as well.

We filmed Spanish-language diabetes educational videotapes in Starr County with local physicians, nurses, dietitians, and people with diabetes.¹⁹ We were told by several individuals in Houston who had videotape production experience that Mexican Americans frequently watched poor-quality soap operas on television, so we did not need to be too concerned about making well-designed, expensive videotapes. We disagreed with this logic and made the best videotapes we could afford with the generous funding provided by The University of Texas. We employed the television production company that developed Red Duke’s health segments that are seen all over the country, and we filmed most of the videotapes on site in Starr County.

In the first videotape, a Catholic priest is featured talking in Spanish about why people get diabetes. He addresses the issue of "fatalism," a belief that one is given a disease such as diabetes by a higher power as a punishment for previous sins. We were told in our focus groups that this belief was common in Mexican Americans and interfered with individuals assuming personal responsibility for their diabetes. We have learned that this is a very controversial subject, and that beliefs reflecting fatalism differ among generations. We have also seen evidence that this belief is not a characteristic just of Mexican Americans. It is common among people of all ethnic backgrounds, particularly of those who are older.

Authors in this issue and the populations about whom they write represent ethnic diversity—African American, Japanese American, Native American, Native Hawaiian, Native Alaskan, non-Hispanic white, and, with my perspective added, Mexican American. Despite this diversity, a number of common themes emerge.

• Minority cultures do not like to be told that in order to be healthy they can never again eat their favorite ethnic foods.
• Minority cultures prefer to be spoken to in a language that they understand.
• Minority cultures value their families and rely on family members for information and support regarding health affairs.
• Minority cultures have experienced such high rates of diabetes that it seems to them impossible to avoid diabetes and its consequences.

So, how are minority cultures different from one another or distinct from the majority culture? (In Texas, Mexican Americans are quickly becoming the majority culture.) Aren’t these common values, and wouldn’t all people become fatalistic if they saw all their family members dying from the same disease?

We are not really that different from one another. There are more differences—gender, generational, and socioeconomic—within cultures than between cultures. As individuals, we desire to be treated with understanding of and respect for our individual differences. The challenge for diabetes care is for us to develop group strategies that are cost-effective while still recognizing individual differences and preferences.

Enjoy the interesting papers on minority populations in this From Research to Practice section of Diabetes Spectrum. The authors have made a concerted effort to provide information that is not only useful for future research, but that also can guide the clinical care of all people with diabetes. The projects reported in this issue represent a number of ongoing similar projects that are key advances in the area of minority health. Community-based research and health programs are difficult to conduct, particularly if they are based in outlying rural areas away from medical centers and many of the resources that investigators and program directors may need. These researchers and others like them are making personal sacrifices to advance the science and practice of diabetes care for minority populations. We applaud their efforts.

Acknowledgments
The Starr County Diabetes Education Study was supported by funding from The University of Texas, the state of Texas, and the National Institute for Diabetes and Digestive and Kidney Diseases and the Office of Research on Minority Health, National Institutes of Health. I am grateful to the diabetic subjects and their family members and friends who participated in the study and to the nurses, dietitians, and community workers—all residents of Starr County and the surrounding border areas—who provided the intervention: Evangelina Villagomez, MSN, RN; Mario Segura, MSN, RN; Lilia Fuentes, BSN, RN; Nora Morín, RD; Maria Olivia (Nena) Garza, RD; Ana Jackson, MS, RD; Norma Cottrell, RD; and community workers Sylvia Hinojosa and Frank Alcazar. Staff of the Starr County Health Studies office in Rio Grande City, managed by Hilda Guerra, has provided valuable assistance with subject recruitment and data collection, in particular. I also express my appreciation to Dr. Alexa Stuifbergen and Dr. Heather Becker for their thoughtful critique of this manuscript.

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