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Comida Sin Frijoles No es Comida : Evaluation of a Type 2 Diabetes Education Program for Latinos by Danielle R. O'Connor A thesis submitted in partial fulfillment of the requirements for the degrees of Master of Arts Department of Anthropology College of Arts and Sciences and Master of Public Health Department of Epidemiology College of Public Health University of South Florida Major Professors: Linda M. Whiteford, Ph.D. Skai Schwartz, Ph.D. DATE OF APPROVAL: November 14, 2003 Keywords: cultural competency, communi ty health clinics, applied anthropology, epidemiology, Spanish translation Copyright 2003, Danielle R. O'Connor
This thesis is dedicated to Scott L. and Auggie the Doggie who left the good times and dog beach of California to provide undying support for my graduate career. Thank you for unc onditional love and encouragement throughout the entire process.
Acknowledgements I would like to thank Kay Perrin, RN, PhD and Lyndie Forthofer, PhD for providing the opportunity to work on th is research project and for offering continuous support of my research. I woul d also like to thank Pfizer Inc. for developing the education program and for pr oviding funding for the research. I would also like to show appreciation to Somer Goad, MPH for not only being one of the best bosses a person could ask fo r but also for constant companionship and laughter during long hours and days on the roads of Flor ida. Instrumental to the genesis of my internship and resear ch were my committee members: Linda M. Whiteford, MPH, PhD, Roberta D. Baer, PhD, and Skai Schwartz, PhD. I appreciate all their efforts in bringing th is research and thesis together. I am grateful to Veronica OCo nnor, Devon Nagle, and Shana Cozad for their editorial assistance. Finally, I would like to t hank all the members and participants in Antro Globe for their comment s, suggestions, and support.
i Table of Contents List of Tables iv Abstract v Chapter One: Introduction1 Chapter Two: Literature Review8 Type 2 Diabetes in Latinos: Epidemiological Background 9 Barriers to Health Care12 Anthropological Considerations 14 Core Cultural Values14 Explanatory Models17 Folk Illnesses20 Folk, Herbal or Home Remedies24 Issues for Latinos with Diabetes26 Depression and Social Support 26 Alcohol Use26 Exercise 27 Body Image28 Diet 29 Medications34 Anthropologists and Diabetes Health Education Programs 35 Epidemiological Overview of Type 2 Diabetes Health education programs 38 Education Programs for Lat inos with Type 2 Diabetes51 Chapter Three: Methods 58 Goal of Florida Health Literacy Study58 Internship Goals and Research Questions59 Internship Location60 Internship Timeframe65 Literature Review 66 Sampling 68 FHLS Participants68 Health Educators69 Clinic Observations71
ii Class Observations71 Interviews 72 Patient Satisfaction Survey73 Limitations 75 Chapter Four: Results and Analysis78 Research Question 1: Is the language and presentation of the Spanish appropriate?78 Research Question 2: What i ssues are important to the Spanish-speakers in relation to diabetes?80 2a. What are the caus al ideas and understanding about diabetes?80 2b. What symptoms asso ciated with diabetes are discussed? 81 2c. What foods and dietary issues are commonly mentioned and discussed?82 2d. Is alcohol discussed? If so, what is said? 86 2e. Is ideal body image discu ssed? If so, what is said? 86 2f. What is said about exer cise and barriers to exercise?87 2g. Are folk illnesses discussed in relation to diabetes? 88 2h. Are home or folk remedies discussed?89 Research Question 3: What ar e the overall experiences with the program? 89 3a. What issues are involved in the Spanish-speaking classes? 90 3b. What is the overall opinion of the program materials?92 3c. What logistical issues are involved for patients coming to classes or meetings with the health educators? 92 Research Question 4: What other issues and core cultural values are involved in participating in this program navigating the health care system? 94 Chapter Five: Analysis and Discussion 98 Research Question 1: Is the language and presentation of the Spanish appropriate?98 Research Question 2: What issues are important to the Spanish-speakers in relation to diabetes?100 2a. What are the caus al ideas and understanding about diabetes?100 2b. What symptoms asso ciated with diabetes are discussed? 101 2c. What foods and dietary issues are commonly mentioned and discussed?102
iii 2d. Is alcohol discussed? If so, what is said? 105 2e. Is ideal body image discuss ed? If so, what is said? 106 2f. What is said about exer cise and barriers to exercise?106 2g. Are folk illnesses discussed in relation to diabetes? 107 2h. Are home or folk remedies discussed?109 Research Question 3: What ar e the overall experiences with the program? 109 3a. What issues are involved in the Spanish-speaking classes? 110 Family in class111 3b. What is the overall opinion of the program materials?112 3c. What logistical issues are involved for patients coming to classes or meetings with the health educators? 112 Transportation 112 Occupations113 Research Question 4: What other issues and core cultural values are involved in participating in this program navigating the health care system? 114 Familismo 114 Respeto 115 Fatalismo 116 Depression 116 Chapter Six: Recommendati ons and Conclusions 118 Recommendations for the Para Su Salud program 119 Recommendation 1 121 Recommendation 2 122 Recommendation 3 122 Recommendation 4 123 Recommendation 5 123 Recommendation 6 123 Recommendation 7 124 Recommendation 8 124 Recommendation 9 125 Internship Experience 126 Relevance for Applied Anthropology and Public Health 127 References 130 Appendices 140 Appendix A: Site Services Information141 Appendix B: Interview Gui de for Health Educators 143 Appendix C: Patient Satisfaction Survey145
iv List of Tables Table 1 Causes of diabetes 80 Table 2 Diabetic symptoms 81 Table 3 Barriers to healthy diet 83 Table 4 Foods commonly mentioned 84 Table 5 Exercise excuses 87 Table 6 Folk illnesses 88 Table 7 Home or herbal remedies 89 Table 8 Transportation to clinic 92 Table 9 Occupations 94 Table 10 Immigration status 95 Table 11 Reasons for depression 97 Table 12 Site #30 Services Information 141 Table 13 Site #31 Services Information 141 Table 14 Site #34 Services Information 141 Table 15 Site #37 Services Information 141 Table 16 Site #39 Services Information 142 Table 17 Site #42 Services Information 142 Table 18 Site #43 Services Information 142
v Comida Sin Frijoles No es Comida : Evaluation of a Type 2 Diabetes Education Program for Latinos Danielle R. O'Connor ABSTRACT This thesis describes an internship for the Department of Anthropology that was part of the Florida Health Literacy Study (FHLS) conducted at the University of South Florida College of Public Health, Depar tment of Community and Family Health in the spring and su mmer of 2003. The FHLS implemented Pfizer Inc.s For Your Health program, a type 2 diabetes and hypertension education programs, at14 comm unity health clinics across the state of Florida. The internship was designed to elicit the experiences of 10 bilingual health educators about their experiences and their perceptions of the experiences of their Latino patients with type 2 diabetes with the Spanish version of Pfizers For Your Health or Para Su Salud type 2 diabetes education program. This internship examined the Para Su Salud program for its cult ural appropriateness for the diverse Latino population in the comm unity health clinics in Florida. This internship combined the fields of ant hropology and public health to provide a holistic analysis of the issues import ant to the Latino Health Educators participating in Pfizers Para Su Salud type 2 diabetes education program.
vi Through anthropological methods including in-depth interviews, class and clinic observations and patient satisfaction surveys, this internship found that the program was well-liked in the community h ealth clinics and it could provide more culturally appropriate t hemes and food options for type 2 diabetic Latinos in Florida. This thesis makes nine specific recommendations for improving the appropriateness and ultimate success of the Para Su Salud educational program.
1 Chapter One Introduction This thesis describes an internsh ip for applied anthropology and public health that depicts cross-cultural, crosslinguistic and cross-ethnic barriers to health education. The internship was part of a larger study, the Florida Health Literacy Study (FHLS), which was conduc ted by the Department of Community and Family Health at the College of Public Health. The Florida Health Literacy Study was a collaboration between the Department of Community and Family Health, which designed the study and implemented and evaluated the For Your Health program, and Pfizer Inc. which designed and funded the For Your Health program. The For Your Health Program is a type 2 diabetes and hypertension education program for community health clin ic patients in Florida who are either on Medicaid or uninsured. The program was developed in English then directly translated to Spanish and placed into 14 co mmunity health centers in Florida. Where possible, biling ual health educators were hired to teach the For Your Health program and collect data on patients. Patients eligible for the study were type 2 diabetics and/or hypertensives on Medicaid or uninsured between the ages of 18 and 65 who were out of control with Hemoglobin A1c measures greater than or equal to 7 and/or random blood sugar measurements of greater
2 than or equal to 135 and/or blood pressu re measurements of greater than or equal to 135. The implementation team, comprised of myself, Kay Perrin, PhD and CoPrincipal Investigator and Somer Goad, MPH, implementation coordinator, was responsible for implementing Pfizers For Your Health program in 14 community health clinics in Florida. The implem entation team was also responsible for conducting pre-study focus groups; pr oviding feedback on program and study materials; setting up the pilot study site ; training bilingual heal th educators to execute the program; and helping to train cl inic staff on their roles were in the study. In addition, the implementation team provided continuous support for health educators and clinic staff through m onthly clinic visits and via email and telephone contact. The internship described here, part of the larger FHLS, took place during the spring and summer of 2003. Its purpose was to look specifically at the Spanish version of the type 2 diabetes For Your Health or Para Su Salud program for its cultural appropriateness fo r the diverse Latino population in the community health clinics in the state of Florida. Chapter Two provides a literature revi ew of the relevant issues to this internship. This chapter presents t he epidemiological background for Latinos with type 2 diabetes, including statistics fo r type 2 diabetes in Latinos; it also offers theories as to why Latinos have a higher prevalence of type 2 diabetes; and cites some barriers to heal th care faced by Latinos. This section is followed
3 by other anthropological considerations fo r Latinos with type 2 diabetes such as core cultural values that may impact heal th care; explanatory models of disease; folk illnesses; folk or home remedies; i ssues with mental health, exercise, diet, medications, and body image. This is fo llowed by a discussion of anthropologists involved in diabetes health educati on programs and what anthropology has offered to these programs. To date, many anthropologists have focused on American Indian diabetes education pr ograms but the lessons learned from these programs can be applied to programs for Latinos. The literature review also includes an epidemiological overvi ew of other type 2 diabetes education and intervention programs and the results they had on such variables as blood sugar levels, HbA1c, and complications associated with di abetes such as amputations, nephropathy, neuropathy, and blindness. In this section the exposure is the intervention or education program and t he outcome is the effect of such programs on such variables as those named above. Chapter Three describes the methods used both in the larger FHLS and as a part of this internship. This chapt er also presents the internship goals and research questions that were part of th is internship. Whenever possible, the remainder of the thesis is organized by these research questions. The internship locations, including descriptions of clinic sites are also included in this chapter. Other methods discussed in this chapter include how the liter ature review was conducted; sampling of both FHLS study patients and health educators; clinic observations; class observations; interv iews with health educators; and a patient
4 satisfaction survey. Finally, Chapter Three includes a discussion of the limitations of this internship and thesis. Chapter Four presents results from the data collected from the various methods discussed in Chapter Three. T he results from this study are organized by the research questions presented in C hapter Three. Resu lts show that the low literacy levels of the Latino patients was a major issue for all of the health educators; however, the format of the curriculum with few words and simple pictures made it easier for health educator s to deal with the problem. Health educators thought the translations were mostly good but believed there should be a separate curriculum for Mexicans who use very different words from other Latinos. Chapter Four also presents results about causal understandings of diabetes for Latinos in this study w ho name heredity as the major cause but, usually, not enough to explain disease onset. The health educators named diet as the most important issue for Lati nos in this study and health educators suggest more culturally appropriate foods be included in the Spanish curriculum, as well as food labels written in English and Spanish. Results also show that folk illnesses and folk or home remedies are discussed by the Spanish-speaking patients. Chapter Four results illustrate t hat the overall experiences with the program were positive for health educat ors and their patient s and that the Spanish-speakers were well engaged in classes along with their family members. Results demonstrate that t he family is less involved with disease management if
5 a woman has diabetes as compared with a man. Health educators thought that lack of transportation was a barrier for pat ients attending class, but patients said that they often drove themselves to the clinic. Other issues mentioned by health educators for Latino patients with type 2 diabetes were depression, fatalism, alcohol use, ideal body image and exercise. Chapter Five presents an analysis and discussion of the results provided in Chapter Four. The analysis and discussi on are presented in the context of the literature review in Chapter Two. The most important issues for Latinos and the Para Su Salud program are presented in this chapter and supported by the literature, including emphasis on a culturally appropriate diet in the curriculum for Latinos; family involvement in dis ease management, especially for women; explanatory models of disease including folk illnesses; use of home or folk remedies such as herbal teas and cactus ; and discussion of depression, alcohol, ideal body image, and exercise. Issues that were not supported by t he literature included transportation as a barrier to reaching the c linic, and the fact that several health educators, who are also Latino, had never heard the term fol k illness nor any of the specific folk illnesses discussed in the literature. Resu lts were also conflicting for family involvement in class. While health educators said that Spanish-speaking patients were more likely to bring fam ily members to class, only 25% of the Latino patients themselves sa id they took family members to class, a similar percentage as English-speakers.
6 Finally, Chapter Six, Recommendat ions and Conclusions makes nine primary recommendations to make the Para Su Salud type 2 diabetes education program more culturally appropriate, and thus likely more effective, for Latinos in community health clinics in Florida. In addition, other less crucial recommendations are made. While the Para Su Salud program was well received by the clinics and their patients, there are some im provements that can be made to make the program even better fo r the diverse Latino population in the community health clinics in Florida. The primary recommendations made in this chapter are as follows: first, change the di et section of the curriculum to include more culturally appropriate diet conc epts, foods, and cooking suggestions. Second, emphasize family involvement in disease management, especially for female patients. Third, include food labe l reading in English in the curriculum with appropriate Spanish translations. F ourth, acknowledge explanatory models of illness that may be differ ent from that of American culture, including Gods will and folk illnesses such as susto and nervios Fifth, include discussion of folk or home remedies and their potential intera ctions with prescribed medications. Sixth, include sections on alcohol, depre ssion and erectile dysfunction as these were commonly asked-about topics and named as important issues by the health educators. Seventh, discu ss ideal body image and exerci se in ways that are sensitive to Latino beliefs and practices. Eighth, include more drawings and representations of Latinos in the curri culum. Finally, ni nth, develop separate curriculums for Mexican patients and other Latin American patients.
7 In concluding this thesis, Chapter Six also discusses the overall internship experience, which included multiple in terests including those of a major corporation (Pfizer Inc.), an academic department (Community and Family Health), and an anthropologist (myself.) Wh ile there were challenges in working on a multidisciplinary team, t he end result was a program that clinics and patients appear to greatly appreciate and enjoy. Th is chapter presents the experience of the dual degree program in Applied An thropology and Public Health and this internships relevance for these two fields.
8 Chapter Two Literature Review The following is an overview of the liter ature relevant to this internship and, specifically, to issues important to Latinos with type 2 diabetes. The discussion begins with an overview of ty pe 2 diabetes in the Latino community. This chapter will also review other health issues in the Latino community such as the cultural values that may affect t he ways in which Latinos experience these diseases and navigate the health care system; barriers to health care; folk illnesses and remedies; diet; exercise; body image; and medications. In addition, there is a discussion of what anthropolog ists have contributed to the field of health education and diabetes. Following, t here is an epidemiological review of other type 2 diabetes educat ion programs both in t he U.S. and abroad with several focusing on Latinos. In this secti on, the exposure is the respective health education program under study and the outcomes are a variety of variables including changes in Hemoglobin A1c (HbAlc) levels, self-management behaviors, foot care, amputations, kidney problems, eye problems, an d other potential complications associated with type 2 diabet es. Education programs specifically designed for Latinos will be discussed mo re in-depth for cultural themes It is extremely important to note that while the term Latino is used here to refer to "all persons living in the United St ates whose origins can be traced to the
9 Spanish-speaking regions of Latin America, includi ng the Caribbean, Mexico, Central America and South Amer ica" (Flores 2000), Latinos represent many different cultures and diverse belie fs within those cultures (Flores 2000; Oboler 1992). Some still choose to use the term Hispanic to refer to these groups and "although Hispanic is still the official designation used by the federal government this term places narro w and undue emphasis on the European influence of Spanish colonialism. Latino is a more inclusive term that does not de-emphasize the crucial roles of indigenous Indian cultures and African slaves in Latin America" (Flores 2000). The term Hispanic may be used when discussing other research in which the authors use this term. Type 2 Diabetes in Latinos: Epidemiological background First, the epidemiology of these di seases in this population will be discussed, offering important understanding of the backgr ound of type 2 diabetes in the Latino community. Epidemiolo gy seeks to study and measure the distribution and determinants of diseases in populations. Furthermore, there are four basic functions of epidemiology. They include: 1) to discover the agent, host, and environmental factors which affe ct health, in order to provide the scientific basis for the prevention of disease and injury and the promotion of health; 2) to determine the relative import ance of causes of illness, disability, and death, in order to establish priorities fo r research and action; 3) to identify those sections of the population that have the greatest risk of specific causes of ill health, so that the indicated action ma y be directed appropriately; and 4) to
10 evaluate the effectiveness of health pr ograms and services in improving the health of the population (Brownson 1998). In recent decades, the prevalence of type 2 diabetes has grown at an alarming rate. As of 1998, 10.5 milli on people had diabetes compared to 1.5 million in 1958. Diabetes care accounts fo r 15% of all health care expenditures in the U.S. and for 27% of Medicare expenditures (Luchsinger 2001). The population especially affected by this epidemic is the Latino population in the United States. The Latino population is gr owing 53% faster than the total U.S. population and by 2006 will be the largest minority in the U.S. (Dreger and Tremback 2002). Latinos are two to five times more likely to develop type 2 diabetes than non-Hispanic whites (Chesla et al. 2000). In addition, Latinos with type 2 diabetes experience more complicat ions associated with the disease, including poor circulation, blindness, kidney failure, and amputations. Although diabetes is the seventh-l eading cause of death for the general U.S. population, it is the fifth-leading cause of deat h for Latinos (Luchsinger 2001). Why Latinos have such a higher prevalence of type 2 diabetes is not completely understood. Theories point to four main contributing factors: genetics, lifestyle (including diet and exerci se), stress, and access to health care (Urdaneta and Krehbiel 1989; D'Arrigo and K eegan 2000; Lorenzo et al. 2001). No matter what a person's ethnic background, diabetes tends to run in families, indicating a genetic connection. Some s uggest that diabetes is particularly prevalent in some Latino groups because of the admixture of American Indian,
11 Spanish and African genes. The other tw o groups highly affected by diabetes are American Indians and African Americ ans, thus a mixture of these genetic pools would lead to the increased suscept ibility of Latinos to type 2 diabetes. Lifestyle has become a major iss ue in the increased prevalence and incidence of type 2 diabetes. Accordi ng to the epidemiologic transition, as societies have experienced improvements in social, economic, and environmental conditions, there has been a dec rease in infectious diseases and an increase in chronic, degenerative diseas es such as hypertension and type 2 diabetes (Omran 1971). In the past, gr oups from Central and South America lived more active lifestyles as hunters and gatherers or agriculturalists. Now the Latino population, along with most Americans, lives a more sedentary lifestyle as people have migrated from rural to urban areas. This, compounded with a westernized diet high in fat and simple as opposed to complex carbohydrates, leads to an inactive, unhealthy lifestyle that often results in obesity, a known risk factor for the onset of type 2 diabetes. This is especially important for Latinos, as they are more likely to be overweight than non-Hispanic whites (Urdaneta and Krehbiel 1989; D'Arrigo and Keegan 2000). According to some, Latinos live under a greater amount of stress due to culture change and poverty, which can c ause a weakening of the immune system and susceptibility to type 2 diabetes (Ur daneta and Krehbiel 1989). Part of this stress may include unequal access to health care, leading to more complications associated with type 2 diabetes.
12 Barriers to Health Care Many Latinos are not legal citizens and are therefore unable to receive health care benefits either from their em ployers or the government. They may appear eligible for Medicaid based on t heir income, but do not qualify based on their residency status. There may al so be great fear among undocumented people that if they go to a clinic someone who works ther e will turn them in to the Internal Naturalization Service (INS). This fear is not unfounded as Harthorn (1998) found from in-depth interviews with farm workers and health care providers in California; Harthorn (1998) found that the INS has clinics under surveillance to apprehend undocumented immigrant farm workers seeking medical care. Many Latinos living in ru ral areas are migrant farm workers and are generally less healthy than the rest of the population due to long days of heavy labor; exposure to sun and pesticides; and lack of proper sanitation and water facilities. The life expectancy of migrant workers is 49 years, compared to the national average of 75 y ears (Sandhaus 1998). Furthe rmore, if migrant farm workers do go to a clinic for diabetes care, th ey find it difficult to obtain continuity in care due to their transient lifestyle. (Goldsmith 1993; Hart horn 1998; D'Arrigo and Keegan 2000). Many other circumstances keep Lati nos out of health clinics. One important issue is the language barrier. The Spanish-speaking population in the United States grew from 6. 4% in 1980 to 10.2% in 1995 and is projected to be 19% by the year 2030. Not only are many of these Spanish-speakers illiterate in
13 English but in Spanish as well (Dr eger and Tremback 2002; Flores 2000). In fact, about 50% of Latinos are functionally or marginally i lliterate (Dreger and Tremback 2002), making it even more difficult to navigate the health care system, which barrages people with big word s, complex disease descriptions and complicated prescription instructions. If there are no health care professionals who speak Spanish, it may be useless for a Latino to seek care. Even using a translator can be a slow and frustrating process that can yield inaccurate information. If diabetes educatio n is offered, it is often on ly in English, making it inaccessible to Spanish speaking pati ents who may be most in need of the education. As Antonia Novello, former Surgeon General of the U.S. Public Health Service put it in 1993 " in a cu lture dominated by honor and pride, there is a pervasive fear of getting involved in a health care system where the language is not understood, where the form s are too long, and the where the people behind the windows may seem to be judging more than caring" (in Goldsmith 1993:1603). Another factor impeding Latinos from going to clinics is that work is believed to be far more important than getti ng checked for something that may or may not be serious. Latino men especially view working to support the family as the most important thing in life. Not onl y is work considered important, it is usually the sole means of supporting the fa mily. Thus, the Latino family cannot afford to spend the day at the clinic. In addition, Latino families may not have transportation to the clinics, especially in rural areas. They could possibly spend
14 half the day just getting to the clinic w here they may have to wait hours to see a doctor who may not speak Spanish (C hesla et al. 2000; D'Arrigo & Keegan 2000). Anthropological Considerations In addition to the many barriers to health care mentioned above, other issues affect Latino health and many of them are cultural. In the following section some of the cultural beliefs surrounding diabetes and illness by Latinos and how they affect health and healthcare will be discussed. Core Cultural Values Latinos have several cultural values that have been identified as possibly affecting the way they perceive illness and navigate the health care system. The first is collectivism, which according to Marin & Marin (1991:11), emphasizes the "needs, objectives, and points of view of an ingroup while individualistic cultures determine their social behavior primarily in terms of personal objectives, attitudes and values that resemble little if at a ll those of the ingroup." The collective attitude of Latinos leads to a preference for more interpersonal relationships and a need to please others. This could lead to the desire for clinic staff to be more friendly and caring about each patient. It could also lead to the readiness for the patient to acquiesce to the doctor's r equests, or to answer the doctor's questions the way the patient thinks the doctor wants them answered. A second basic value of Latino culture is respeto or "respect." Latinos are respectful of doctors and other health care professionals. Out of respect for
15 doctors, Latinos may be reluctant to a sk questions as this may be viewed as disrespectful. Furthermore, Latinos ma y nod their heads as a sign of respect rather than of understanding w hat the health care professional is telling them. Thus, the doctor leaves satisfied that t he patient understands what s/he has told the patient but the patient leaves not cl ear on what the doctor has told him/her (Marin and Marin 1991; Flores 2000). Mi scommunication and misunderstanding are also demonstrated in another study that assessed the health of Spanishspeaking Mexican-American pat ients. While doctors interviewed for this study considered about 80% of thei r patients in good health, only 15% of these patients considered themselves in good health (Angel 1989). Simpatica is a core value of Latino groups that calls for behavior that promotes pleasant social relationship s without conflict. Again, to avoid confrontation with clinic staf f, a Latino patient may tell them that s/he is adhering to his or her diet and exercise routi ne when, in actuality, s/he is not. Furthermore, Latinos expect clinic staff to act with simpatica and if they do not, the patient will be weary of going back to th e clinic (Triandis, et al. 1984; Marin and Marin 1991; Flores 2000). Linked to simpatica is value of reciprocity. Simoni and Perez (1995) note from thei r study of support groups for Latina women, that the women enjoy both giving and receiving advice and help. They add that Latina women only feel comfortabl e participating in gr oups if they can give something in return.
16 Another cultural value of Latinos is familismo or the importance of family. The extended family is crucial to Lati no life (Anderson, et al. 1998; Brown and Hanis 1999; Flores 2000). Decisions are based not just on individual needs and wants but those of the entire family. Flores (2000) explains the tenets of familismo as the following: obligation to pr ovide material and emotional support to the family, support from the family in problem so lving, and decisions based on consulting with and pleasing the rest of the family. The im portance of family comes into play when diabetics consider wh at foods to eat. In Latino families, it is usually the woman who is responsible for cooking, and she will cook what the family wants. If the doctor tells her to change her diet, she may see that as impossible because she cooks what her ent ire family likes, not what she may need (Quatromoni, et al. 1994; A nderson, et al. 1998). The final, and possibly most import ant to diabetes, cultural value addressed here is fatalismo or fatalism. This is particularly relevant to Latino patients with diabetes as this concept s peaks to beliefs about how the patient got the disease and what s/he can do to improve the condition. Fatalismo is the belief that the individual can do little to alter what is going to be fate (Flores 2000). One study found that Latino patient s with cancer were far more likely than non-Hispanic whites to consider the dis ease a death sentence, to say that they would rather not know they had the disease, to say there is little that can be done to prevent cancer, and to believe that canc er is God's punishment (Perez-Stable, et al. 1992). Since diabetes is consider ed a hereditary disease and some studies
17 have found that Latinos attr ibute the onset to heredity (Quatromoni, et al. 1994; Hunt, et al. 1998; Weller, et al. 1999; C hesla, et al. 2000), they may feel that there is nothing they can do to prevent getting diabetes since members of their family had it. As Antonia Novello, form er Surgeon General of the U.S. Public Health Service, stated, "'Hispanics are fata listic. We've been taught that you live, you suffer, you die, that's the way life is The idea has never been presented that if you take care of your health, if y ou go to the doctor early, you won't have to suffer pain or discomfort. Discomfort happens to be the middle name of most people that are of Hispanic desce nt'" (in Goldsmith 1993:1603). In my own research in Costa Rica (O'Connor 2000), when asked why they thought they got diabetes, almost a ll of the respondents declared, Pura Vida !" meaning "that's life!" or "that's just the way it goes!" Pura Vida can be a fatalistic statement that life is good no matter wha t, and there isn't much one can do to change what is destined to happen. If the diabetic patient be lieves that it is fate that they have the disease and that t here is nothing that can be done to improve it, it is more likely that the patient will die or suffer from the many complications associated with diabetes. Explanatory Models In looking at any disease, especially in cultures other than our own, it is imperative that we realiz e that other cultures and ethnicities may have an explanation of and for their disease that differs from the Western or biomedical model. An explanatory model is the way an individual conceptualizes a
18 sickness episode. It includes beliefs and behaviors concerning etiology, course and timing of symptoms, reasons for bec oming sick, diagnosis, methods of treatment, and roles and expectations of the sick individual (Pachter 1994). Explanatory models are influenced by cult ural beliefs, behaviors and values, as well as social class, education, occ upation, religion and pas t experiences with illness and health care (Kleinm an et al. 1978; Pachter 1994). Other studies have looked for causal m odels for diabetes in Latinos. Most studies show that Latinos point to genetics, diet and lifestyle as the cause of their diabetes (Chesla et al. 1998; Hunt et al. 1998; Weller et al. 1999). Chesla et al. (1998) found that most Latinos in thei r study attribute diabetes to heredity followed in order of import ance by weight, diet, and st ress. As mentioned earlier the attribution of the disease to heredi ty can increase the fatalistic view of diabetes. Weller et al. (1999) also found that Latino groups attribute the onset of diabetes to heredity. In comparing the views of Mexican-Americans, Puerto Rican Americans, Mexicans and Guatemalans Weller et al. (1999) found that most views of diabetes concurred with biom edical beliefs. Most participants from all four sites thought that eating sugar or sweets, sugar in the blood, or a lack of insulin caused diabetes. Diabetes was not attributed to hot/cold dichotomies, as is the case with other diseases. The Mexican group identified fright ( susto ), anger and emotions as causes of diabet es and the Guatemalan sample also thought that emotions caused diabetes. The U.S. sample s identified poor diet as
19 a cause of diabetes. The four groups we re also consistent with the biomedical model when identifying the symptoms of diabetes, naming excessive thirst, headaches, dizziness, circulatory problem s, kidney problems and eye problems as indications of having diabetes. In their study of Mexican-Americans' c ausal stories of diabetes, Hunt et al. (1998) found that beliefs often matched the biomedical model of diabetes. However, the Mexican-Americans in this study went beyond biomedical causes to discuss lifestyle choices such as dr inking alcohol, using drugs and smoking; emotional trauma such as the death of a loved one; and physical traumas such as a car accident. Hunt et al. state, "our patients found the biomedically accepted explanations alone to be inadequa te for explaining how diabetes had come into their own lives. They responded to this problem by connecting diabetes to their own history" (1998:961). The authors of this study (Hunt et al 1998) focus on "provoking factors" or those behaviors or events t hat patients name as having triggered the diabetes in them. Provoking factors c an be either behaviors such as smoking, drinking, drug use, over-eating, lack of exercise, or events such as an accident or death of a loved one. Whether or not the diabetic attributes his/her disease to a behavioral or eventual provoking factor can affect the way s/he treats or deals with his/her condition. Patients who cited behavioral fa ctors as the cause of their disease were far more likely to adhere to self -management and treatment practices than those who thought that a tragic event spaw ned their diabetes (Hunt et al. 1998).
20 This again speaks to the idea of fatalismo in that those who think that an unavoidable or divine event triggered their di abetes also believe there is nothing they can do to improve their condition. Zaldivar and Smolowitz (1994) reported that 78% of the Hispanic diabetics in t heir study thought the disease was Gods will, and another 28% thought it was a direct puni shment from God. Folk Illnesses Anthropologists have long argued t he difference between disease and illness. Disease in the paradigm of West ern medicine is the malfunctioning or maladaptation of biologic and psychophysiologic processes in the individual; whereas illness represents personal, inte rpersonal, and cultural reactions to disease or discomfort (Kleinman et al. 1978). Much of the medical anthropology literature on Latinos has focused on folk ill nesses. It is important to consider these folk illnesses as they sometimes play a part in the Latino ideology of type 2 diabetes. There are three folk illnesses common in Latinos t hat will be discussed here: susto embrujado or mal puesto and ataques de nervios or simply nervios in some cultures. Each of these will be briefly discussed to provide insight to some of the cultural values Latinos may bring to disease and health care. Susto is an illness that is thought to be caused by a variety of things including: a frightening experience su ch as a car accident, an animal attack, seeing someone killed, or seeing the Devil or a ghost, and may cause one's soul to leave the body (Logan 1993; Baer 1996; Weller et al. 2002). Susto affects people of each gender, all age, ethnic and economic groups, although Mexicans
21 are most commonly afflicted. Susto is quite common in Latino culture. A study by Weller et al. (2002) looked at susto in Guatemala, Mexico, and a predominately Mexican-American sample in Texas. In their sa mple Weller et al. (2002) found that 92% of G uatemalans, 80% of Mexicans, and 88% of the Texas sample had known someone with susto ; 89% of Guatemalans, 80% of Mexicans and 66% of Mexican-Americans in Texa s had someone in their family with susto ; and 37% of Guatemalans, 58% of Mexic ans and 59% of Mexican-Americans in Texas personally had susto There is usually a long period of ti me between the frightening event and the onset of symptoms (Logan 1993, Poss and Jezewski 2002). It has been argued that susto is not simply a psychiatric diso rder but also m anifests itself biologically in the form of disease and is associated with higher rates of morbidity and mortality (Rubel 1984). However, there is no relation between the severity of the frightening event and the gravity of resulting sympt oms or disease (Logan 1993). Susto victims have been found to have up to five clinically diagnosed diseases but physicians commonly deny that susto is or can lead to a true medical condition (Rubel 1978). Many have attempted to link susto to one single diagnostic category, but these efforts have often been in vain and proved inconclusive. Some of the categories considered have been hypogl ycemia (Bolton 1981), parisitization (Signorini 1982), schizophrenia (Pages Larraya 1967); others believe susto is triggered by grief (Houghton and Boersm a 1988). The only variable that has
22 been statistically correlated with susto is breakdown in one's social role functioning (Logan 1993). In a recent study looking at Mexic an-American explanatory models of type 2 diabetes, Poss and Jezewski (2002) found t hat those in the study felt that susto plays a significant role in the onset of diabetes. In this study, 22 type 2 diabetic Mexican-Americans living in El Paso, Te xas participated in open-ended, in-depth interviews and focus groups about type 2 diabetes and susto Poss and Jezewski (2002) found that their sample of Mexican-Americans incorporated both a traditional and biomedical model for understanding and treating type 2 diabetes. Most participants understood the relation between insulin, the pancreas, and sugar in the body and thought t hat diet regulation was important in the control of diabetes. Poss and Jezewski (2002) also found t hat only one of their subjects did not think that susto or a powerful emotion caused di abetes. Almost all of their participants could recount a frightful incident that contributed to the onset of their diabetes. Such incidents included autom obile accidents, witnessing a death by gunfire or drowning, being threat ened with a gun, and the sudden death of a family member. In this sample, susto was not viewed as an illness per se but, rather, was seen a specific event t hat caused the body to become more susceptible to disease, in this case, type 2 diabetes" (Poss and Jezewski 2002:369).
23 While most subjects said that susto was the precipitat ing factor to the onset of diabetes, they also named other biomedically accepted causes such as lack of proper self-care, being overweight, poor diet, lack of exercise and stress. Treatments for susto included a barriada in which a healer moves an egg over the person and then breaks it in a gla ss allowing the healer to diagnose the problem. Another commonly mentioned remedy for susto is prayer (Poss and Jezewski 2002). Ataques de nervios (attack of the nerves) or simply nervios (nerves) is another folk illness commonly discussed in Latino health and health care. 5nervios occurs in response to stressful experiences such as the death of a loved one, family conflict, or threat of some kind. Nervios manifests itself in rashes, depression, tiredness, feeling cold, heart palpitations, fainting, and seizure. An attack does not usually last long once the family or social network is there to support the victim (Guarnaccia 1993; Baer 1996). A recent comparative study by Baer et al. (2003) looked at both nervios and susto across four distinct cultural gr oups: Guatemalans, Mexicans, Mexican Americans and Puerto Ricans. This study found that all four groups cited the following symptoms of nervios : depression or s adness, a feeling of hopelessness, crying, shaki ng or trembling, headache, feeling of choking, cold sweat, weight loss, bad temper and insomnia (Baer et al. 2003). Interestingly, many of these symptoms are similar to those mentioned for diabetes.
24 Mal puesto or embrujado (witchcraft) is believed to cause insanity or psychotic episodes and symptoms incl ude moody or strange behavior (Baer 1996). It can also manifest as a physical illness depen ding on what the bewitcher was trying to accomplish. It is often believed that the bewitcher was angry or jealous of the bewitched and caused the mal puesto The afflicted often first seek out herbal remedies to neutralize the spell (Koss 1993). Although mal puesto or embrujado are not commonly associated with diabetes, they go to further show the strong belief in folk illnesses by many Latinos. Each of these illnesses is impor tant to understand because they are sometimes heard in the discussions of di abetes and hypertension. Some Latinos refer to nervios as a symptom of diabetes while others think they got diabetes because of a frightening experience ( susto ). In addition, these folk illnesses provide evidence that Latinos seeking hea lth care or health education may have different concepts and causal models of disease. Furthermore, folk illnesses have implications for the treatments of ill ness and disease. Many Latinos utilize folk, herbal or sometimes called home, remedies. The next section discusses the relevance of home remedies to Latinos with type 2 diabetes. Folk, Herbal or Home Remedies Although other studies hav e shown that Latinos trust and/or consult their pharmacist more than their doctor (Ander son et al. 1998; Higgins and Learn 1999), Weller et al. (1999) found that respondents thought that diabetes is a disease best treated by a doctor and by self-management of diet and exercise.
25 Folk remedies such as spearmint tea, massage, rubbing the sick person with an egg that are often used to treat other dis eases were not considered effective by these samples. The exceptions were in Mexico and Guatemala where aloe was thought an effective treatment for diabet es. Studies have in fact shown aloe vera to have hypoglycemic properties (Ghannam in Weller et al. 1999). Other ethnobotanical treatments are widely used in Mexico to treat diabetes and may continue to be used by Mexican immigrants in the U.S. In Baja, Mexico two plants have been shown to be very effect ive in the treatment of diabetes, Bidens pilosa (Beggar Ticks) and Spanish needles, and Tecoma stans (Trumpet Bush) and Yellow Bells. These plants are often sold by herbalists in compuestas, or combinations of plants t hat are thought to treat diabetes (Winkelman 1989). In other research, (T rotter 1981) found that remedios caseros (home remedies) were commonly used to treat a variety of diseases by MexicanAmericans in South Texas. While specif ic remedies are not discussed in this paper, diabetes and hypertension were on t he list of diseases that are commonly treated by remedies caseros. Another study by Zaldlivar and Smolowitz (1994) found that 17% of the Hispa nics with diabetes in their study were using herbal remedies. It is important to know about these folk remedies and what diseases are treated with them as Latino patients in the U. S may use them along with other biomedical treatments, leading to sometimes dangerous interactions (Pachter 1994). Winkelman further argues, The physician must be knowledgeable about he rbal remedies and their effects since Mexican-Americans and other clients may make use of multiple systems of health care simultaneously. Ignoring or discounting the pot ential efficacy of herbal medications may lead
26to serious treatment problems since traditional Mexican-American remedies may be potentially toxic. Ignoring the effects of medi cinal plants could frustrate medical treatment since traditional remedies may counteract biomedical remedies or compound their effects to dangerous levels. On the other hand, acceptan ce of the potential efficacy of traditional remedies facilitates the establishment of docto r-patient rapport and increases the likelihood of full disclosure and patient compliance (1989:256). Issues for Latinos with Diabetes This section addresses other important issues for Latinos living with type 2 diabetes. Depression and Social Support Research has shown that Latinos are more likely to be depressed than Black or White Americans (Misnksy et al. 2003). Women especially may feel isolated from friends and family who no rmally provide social support because they do not understand diabetes, and do not know how to give the woman the support she needs. This can lead to greater stress, anxiety and depression. In the Latino community, depression can be viewed as a weakness and Latinos may not be open to discussing depressi on or depressive symptoms (Henderson 1993). Furthermore, Latinos may turn to family and friends and a close social support network for help, rather than to the medical community. Alcohol Use Consumption of alcohol may be an important issue for Latinos with diabetes, especially men. Alcohol can raise blood sugar levels and effect diabetes management. Research has shown that while Latinos drink less or equal to what non-Latino Whites drink, they drink more than other minority groups (Caetano 2003). It also shows t hat Latino men drink more than Latino
27 women, and that consumption varies across ethnic groups and levels of acculturation. U.S.-bor n Latinos and Mexican-born men are more likely to be heavy drinkers. In addition, the more acculturated Latinos drink more heavily than less acculturated Lati nos (Giachello 1996). Exercise Lack of physical activity or exercise in the Latino population has lead to obesity and, thus, chronic diseases. A ccording to Avila and Hovell (1994) over 50% of Latino men and women are over weight and 12% to 35% are obese. Research has shown that approximatel y 32% of Mexican-American men and 45% of Mexican-American women do not par ticipate in any leisure-time physical activity, compared with 22% of Black American men, 39% of Black American women, and 11% of White American men ,and 21% of White American women (Kriska and Rexroad 1998). Women who are often busy with household duties cannot find the time to exercise as they may be too busy watc hing their own and others' young children, cooking family meals, and cleaning house to go for a walk. Many Latino women and men may feel that they get enough ex ercise while doing household chores or working in the fields. Furthermore, ta king time to exercise might be seen as selfish and taking away from the duties of providing for t he family. Others identified family, friend and community support as incentives to begin and continue with an exercise progr am (Kriska and Rexroad 1998).
28 In addition, many associate exercise only with expensive gyms and highimpact aerobics rather than brisk walk ing (Urdaneta and Krehbiel 1989.) Some Latinos with diabetes have also cited fear of walking in an unsafe neighborhood and fear of physical side effe cts such as foot swelling and leg pain as obstacles to an exercise routine (Urdaneta and Krehbi el 1989; Quatromoni et al 1994.) However, many others have named walk ing and dancing as favorite ways to exercise (Quatromoni et al. 1994.) Body Image While the ideal body image for most Americans may be that of frail skinniness (even though 60% of us are obes e), many other cultures around the world see plumpness as a positive attribut e. In fact, some fat can be good to protect against infectious disease and is protective against gastrointestinal problems and anemia (Cassidy 1991). Howe ver, morbid obesity is associated with higher morbidity and mortality rates from chronic disease such as type 2 diabetes and hypertension. Bigness can be a symbol of dominance, power, wealth, and prestige as well as fertility, health, beauty and sex appeal (Cassidy 1991). A study by Massara (1989) of obesity in Puerto Rican women in the U.S. found that being heavy wa s desirable in the Puerto Rican culture and represented many positive things. Massa ra (1989) discovered that a womans weight would increase exp onentially over time with such events as marriage and childbirth. Gaining weight in the beginning of a marriage shows that a womans
29 new husband is taking good care of her, and the weight is increasing her fertility and improving her health. It is also believed that not eating a lot or not gaining weight during pregnancy will hurt the unborn ch ild. Women in this study did not concur with biomedical defin itions of overweight or obesity but, rather, saw weights that are considered by physici ans in the overweight or obese categories as either plump or no rmal. As Massara (1989) notes, these findings have implications for health educ ation if the partici pants do not believe that they are overweight in the first place. Diet Latinos with diabetes face several barriers to eating a healthy diet. As mentioned above, women ar e usually responsible for the cooking and maintenance of the househo ld. In one study, Anderson et al. (1998) found that providing traditional meals for the fa mily may be a huge barrier in a woman's management of her diabetes. A Latina is mo re likely to cook what her family likes rather than what her diabetic diet may require. Changing her diet would be considered selfish or a bur den to her family (Oomen et al. 1999). On the other hand, Latino men with diabetes find it difficult to give up eating traditional foods, and prioritize socializing and drinking with friends over diabetes management (Anderson et al. 1998). Another consideration is the expe nse of eating healthy. A study conducted in urban Hartford, Connecticu t by Himmelgreen et al. (2000) found that 89% of the Latino households they in terviewed were receiving food stamps.
30 Food stamps often do not allow for a heal thy diet, especially one that may cater to the needs of a diabetic. In addition, 25% of the adults in the households said that they cannot afford to eat properly. Other barriers mentioned in a study by Palmeri et al. (1998) were lack of resources, limited education or cooking skills, uncertainty caused by confusing or contradictory messages, family history (customs, habits), and food preferences. Women said that they tended to cate r to their husbands and childrens food preferences even if they are not the health iest choices. In addition, informants mentioned lack of time to prepare some foods and lack of storage space limited the familys food choices as ba rriers to a healthy diet. Another barrier to eating a healthy diet is a rural to urban migration. Foods in rural areas tend to be more natural and healthy, whereas urban life relies on processed and fast foods. In addition, many migrants have to deal with the stresses of acculturation and assimilati on to a new country. As Baer (1998: 101) argues, Ethnicity is important to traditional food choices and the relative importance of the foods the larger society defines as being of high prestige value. Ethnic groups trying to assimilate into lar ger society may strive to emulate eating habits of those they perceive to be more mainstream. Furthermore, research has shown that many Latinos believe a diabetic diet to be inconsiderate of traditional Lat ino foods such as beans, rice, tortillas, and peppers (Urdaneta and Krehbiel 1989) and is boring, flavorless and
31 "overall unappealing, irrelevant, and unrel ated to Latino culture and lifestyle" (Quatromoni et al. 1994:871). Baer and Nichols (1998) have developed a guide for health care professionals of what different Latino gr oups in the U.S. eat. The guide should prove useful to health educators and diet icians working with these groups. The following will give an overview of the f oods eaten by specific Latino groups. Not all groups are included but it can give an idea of the importance of understanding the cultural food traditions of the people with whom health care professionals are working. According to Baer and Nichols (1998), typi cal diet for Puerto Ricans in the U.S. includes rice, black beans, peas (kidney beans) flavored with salt and lard, starchy root vegetables, salt cod fritters ( bacalaitas ), plantains ( platanos ) stuffed with spicy beef or fried pork rind, arroz con pollo (rice with chicken), pasteles (corn meal or mashed plantains stuff ed with meat mixture wrapped in plantain leaves and steamed), and seranto (cod and potatoes). They often use a seasoning called adobo which is a mixture of lemon, garlic, salt, pepper and other spices. Puerto Ricans enjoy Americanized Chinese food as well. Caf con leche (coffee with milk) is also popular More traditional foods include sofrito (a sauce of onions, garlic, cilant ro, sweet peppers, tomatoes and achiote seeds) and bacaloa (dried salt cod). Cuban Americans, along with other Lati no groups, have had to adjust to having their larger meal in the evening as opposed to earlier in the day as was
32 traditional in their home countries. Cubans eat a lot of pork but consider it expensive, so they eat a lot of other m eats as well, including beef, chicken, lamb, and goat. Meats are often mari nated in lemon, orange or grapefruit juice and are fried in pork or other animal fat. Cubans also enjoy a variety of traditional vegetables including malanga, name, bonato, plantanos, and llame They also eat salads with lettuce, tomatoes, avocado, onions, carrots, and peas with an oil and vinegar dressing. Fruits are al so a staple including oranges, mangoes, bananas, and guava. Another main staple of the Cuban diet, black beans ( frijoles negros ) and rice, as well as Cuban bread are often used to make sandwiches. Mojo as seasoned oil, is also put on sandwiches. Stews made with sofrito (mentioned above) and starchy root vegetables are often sauted in butter, garlic, onion and lemon. They eat a lot of cheese and butter, but rarely use milk or cream, except in caf con leche Cubans have been known to consume large quantities of s ugar (Baer and Nichols 1998). Baer and Nichols (1998) note that the Me xican diet is historically based on corn, squash and beans. A variety of beans are regularly consumed, along with corn tortillas made with limewater, making them high in calcium and niacin. Beans and tortillas are sometimes eaten wit h meals two or three times a day. Pork and pork products are also popular with Mexican-Americans along with goat, beef, chicken, fish and seafood. Vegetables commonly eaten are tomatoes, onions, squash, nopales (cactus), garlic, avocado and chiles. Salads are rarely eaten except by the upper class. Common fruits are pineapple,
33 banana, strawberries, pomegranates, oranges, mangoes, papaya, coconut, quinces, cherimoyas, apples, and limes. Main dishes are commonly stir-fried (quisados) and lard is used for cooking. Soups (caldos) are also common and contain less fat. Mexicans eat a lot of foods with sugar, including fried pastries ( churros ), pan dulce (sweet bread), bunuelos (fried tortilla dough served with honey) and soft drinks, ice cream and candy. Licuados (milk blended with bananas and sometimes an egg), but other milk products are rarely consumed. In fact, many Latinos are lactose in tolerant and have trouble digesting milk. According to Kingfisher and Millard (1998) at least 55% of Mexican-Americans are lactose intolerant. Tamales and enc hiladas, common in American Mexican restaurants are only eaten on special occasions. The last group overviewed by Baer and Nichols (1998) are Guatemalans. Common to their diet are black beans squash, green beans, avocados, potatoes and other greens. Corn tortillas are also popular. Guatemalan refugees eat a lot of candy, chips, soda and other junk foods. Although not all Latino ethnic groups are recognized in the Baer and Nichols (1998) guide, it is an important reference point and clearly demonstrates the diversity and differences in Latino diets as compared to the traditional American diet. In contrast, another study by Palmeri et al. ( 1998) found that lowincome Latinos were more accultur ated to American f oods than they had anticipated. This study found that th rough descriptions of everyday meals, participants mentioned some traditional Latino foods but, more commonly,
34 followed American eating patterns. Breakfast included dry cereal on the weekdays and bacon, eggs and pancakes on the weekends. Lunch and dinner meals consisted of stews, casseroles, spaghetti, burritos and tacos with very few participants mentioning vegetables and none mentioning fruits. Participants in this study asked for nutritional educati on to counteract the negative influences of acculturation and television advertisements. They saw the most important nutritional education as that for what to feed children so that they are healthy. Many Latino families not only find it too expensive to buy healthy foods, but medications and glucose strips as we ll, making it difficult to self-manage diabetes (Quatromoni et al. 1994; Anderson et al. 1998; Baer 1998; Palmeri et al. 1998; Chesla et al. 2000). Medications Another issue for many Latinos living with diabetes is the economic cost of pharmaceuticals required to treat type 2 diabetes. Without a major change in lifestyle, including proper diet and exerci se already mentioned as more extreme barriers for Latinos, the only way physi cians treat diabetes is with drugs, and there are plenty of them out there. However, many Latinos are uninsured and cannot afford the cost of medications. Often times a choice has to be made between providing food for the family or purchasing medications; the obvious choice is food for the family. Furt hermore, Latino patients do not really understand what the drugs are or why they are taking t hem except to alleviate some of their diabetic symptom s. They identify their me dications by the color of
35 the pill rather than the name and what it does in their bodies (Urdaneta and Krehbiel 1989.) In addition, as menti oned previously, Latinos may be using home remedies that could have danger ous interactions with prescribed medications (Winkelman 1989; Pachter 1994). Anthropologists and Diabetes Health Education Programs Given the literature on the cultural implications of illness and disease, and the many barriers to health and health care experienced by Latinos, there is evident need for anthropological research and methods in the realm of health education. Over the years, anthropolog ists have criticized health education for not providing culturally sensitive educ ation to differing ethnic groups. Good (1995:3) argues that health education was, developed specifically to help public health specialists convince people to act more rationallyto use preventive services, obey doc tors orders, or use medical services appropriatelysuch theories evaluate health beliefs for their proximity to empirically correct knowledge concerning the seriousness of particular disorders or the efficacy of particular behaviors or therapies. The wealth of meanings associated with illness in local cultures is thus reduced to a set of propos itions held by individual actors, which are in turn evaluated in relation to biomedical knowledge. Most of the research conducted by anthropologists on diabetes health education programs has been with Nort h American Indian groups (Weidman 1987; Hagey 1989; Lang 1989; Olson 1999). While these education programs are not directed at Latinos, valuable le ssons can be learned from them about the importance of cultural under standing when delivering an y education program to a specific ethnic group. In working with the Native Diabetes Program in Toronto, Canada among the Ojibiway and Cree tribes, Hagey (1989) found herself trying to ensure the
36 cultural integrity of a di abetes program by using her expertise as both a RN and an anthropologist. Hagey (1989) advocat ed for an event that would get the attention of native groups, and get them involved in the diabetes education program. She advocated for a maple sugar festival because she knew it was something the people would get involv ed with and encourage participation. Other health care professionals were adamantly against the idea because maple sugar was bad for diabetics. However, Hagey (1989) argued that you could not tell this culture that they cannot celebrate or have maple sugar because it is a part of their cultural identity, and s hould be embraced with a caution that diabetics can have very small amounts of m aple sugar. In the end, Hagey (1989) won out; the event was a success, attrac ting many American Indians with type 2 diabetes to the educational program. In addition, the Canadian Diabetes Asso ciation Good Health Eating Guide for diabetics had a picture of maple sugar with a big red X ov er it with other foods that one should not eat. Hagey ( 1989) argues that these Dos and Donts are too similar to the Thou Shalts and Thou Shalt Nots in Judeo-Christian commandments that many Amer ican Indians resent as a result of missionary schooling. Thus, the Ojibiway and Cr ee were not going to be open to the education that was once again preaching to them about what they could and could not do, and that was inconsi derate of their cultural beliefs. Hagey (1989) and others working on t he Native Diabetes Program also had to be aware of the cultural idea of balance in the Ojibiwa y and Cree groups.
37 In trying to figure out how to get the point across that obesity is linked to diabetes without offending anyone or going against t he idea of balance, a group of health workers came up with an illustration of a fat man and a thin man, both with diabetes, with their arms around each other. This illustration got the point across that both overweight and excessively thin people can both get diabetes; the illustration showed a balance. In Hagey s work, it is evident the benefit an anthropologist can bring to an education program for a specific culture. Other anthropologists have collect ed narratives about diabetes from American Indians in hopes of recomm ending the best possible education programs for specific groups. Lang (1989) worked with the Dakota to understand their explanatory models of diabetes, and which cultural practices might influence diabetes within this group. As in Lat ino culture, Lang (1989) found that food plays an integral part in social intera ctions and hospitality. Lang (1989) also found that many Dakota use home remedies and participate in healing rituals to treat diabetes, and that their explanatory mo dels involve myth and an idea that all is not right with the moral and social order of the community. Lang (1989) emphasizes that these cultural scripts need to be taken into consideration in order for the Native Diabet es Program to succeed. Some anthropologists working in heal th education (Nichter 1985; Olson 1999) have noted the importance of designing health education that is culturally relevant and culturally sensitive. One aspec t of this is the spec ific learning styles of specific ethnic groups. Olson (1999:12) argues that many diabetes education
38 programs are designed for the mainstream populati on (mostly whites) and emphasize competition, def erred gratification, and a linear mode of thinking, which may not always be appropriate models to employ in [other] cultures. Furthermore, these education programs often utilize a direct learning style that is a non-participatory lecture style in whic h the educator (often a doctor or nurse) dictates to the patient what s/he s hould be doing in a one-way flow of information. Indirect learni ng, on the other hand, uses life examples, stories, metaphors, myths, and experiences in whic h there is two-way communication of ideas and issues. This style of le arning may be more appropriate for nonAmerican groups (Olson 1999). The following section reviews the epidem iology of other health education programs for type 2 diabetics. The majo rity of the program s are for non-Latino whites and Europeans. However, there is a focus on the few Latino specific type 2 diabetes education programs that have existed. Epidemiological Overview of Diabetes Education Programs This section reviews several studi es that have focused on diabetes education, and the results diabetes educat ion has had on specific outcomes. Most of the literature focuses on diabetes education targeting American whites, Europeans and older whites with type 2 di abetes. There is relatively little literature focusing on specific outcomes for Latinos who have received diabetes education. However, there are some educ ation interventions for Latinos that have been studied, and those ar e also discussed here.
39 In one randomized clinical trial (RCT), Raji et al. (2002) compared the effects intensive versus passive di abetes education ha d on Hemoglobin A1C (HbA1c) levels. In this study 106 patients with HbA1C readings greater than 8.5% were randomized to either an intensiv e education group, which consisted of a structured curriculum taught by a physi cian, nurse, nutritionist, pharmacist, exercise physiologist and a social worker for 3.5 days, or to a passive education group. The passive group received educat ional materials providing general information on diabetes management that was sent in the mail every three months. There was also a matched c ontrol group that did not receive any education. The mean age of study participants was 60 + 3 years, and 99% of the participants were men (Raji 2002). HbA1C levels were measured at baseli ne, and at three, six and twelve months after randomization. At the end of twelve months, mean HbA1C levels fell significantly (P < 0.001) in both the in tensive and the passive education groups. The intensive group's levels fell 2%, the passive group's levels fell 1.9%, and there was no difference between groups at three and six months. Both groups showed significantly greater decline (P < 0.03) than the co ntrol group, with a 1.2% decrease. The authors concluded that in this group of patients any type of diabetes education, whether intensive or passive, improved glycemic control (Raji 2002). Rickheim et al. (2002) found that group and individual education were equally effective at reducing Body Mass I ndex (BMI) and at improving diabetes
40 knowledge, quality-of-life, and a ttitudes about diabetes. HbA1C levels were slightly more improved in the group classes (2.5 + 1.8%) compared to the individual (1.7 + 1.9%). In this study, 87 s ubjects were assigned to the group classes, and 83 subjects to individual cl asses. Both types of classes were composed of four sessions from five to seven hours, the group sessions lasting longer than individual sessions due to group interaction. A diabetes nurse specialist and a diabetes nutrition specialist taught the curriculum that focused on knowledge, skills and attitudes that woul d encourage, support and promote selfmanagement skills leading to long-term behavior maintenance. Data were collected on each subject at baseline, tw o weeks, three months and six months (Rickheim 2002). McMurray et al. (2002) looked at the effects of diabetes education and care management on patient outcomes in a dialysis unit. In this RCT patients were randomized to either the study group (n = 45) or the control group (n = 38) based on what day of the week they came into the dialysis unit. The study group received intensive education consisting of topics related to self-management behaviors, diabetes-related qual ity of life, glycemic management and control, eye care, foot care, and vascular care (McMurray 2002). In this study, baseline foot risk category worsened in the control group from 2.7 to 3.3 (P < 0.05) but was unchanged in the study group (2.2 to 2.0). The study group had no amputations, wher eas the control group had five amputations. Ten patients in the control group were hosp italized with diabetes or
41 vascular related problems, whereas one patient from the study group was hospitalized for such problems (P < 0.002). In addition, HbA1C levels declined from 6.9 to 6.3 in the study group, whereas the c ontrol group was unchanged (P < 0.005). Diabetes related qual ity-of-life scores also in creased in the study group but not in the control group (P < 0.001), and there was significant improvement in self-management behaviors in the study group but not in the control group (McMurray 2002). In a RCT in older adults with type 2 di abetes Miller et al. (2002) looked at the effects of nutrition education on metabolic outco mes. The control group consisted of 47 subjects and the experimen tal group consisted of 45 subjects; all were age 65 or older. The intervention t aught subjects how to evaluate nutrition information on food labels, meal planning, and diabetes self-management in ten weekly groups sessions, each session lasting 1 1/2 to 2 hours. In this study, the experimental group that received educati on greatly improved fasting glucose and HbA1C levels between pretest and posttest (P < 0.01) compared to the control group (Miller 2002). Several of the studies on diabetes education programs have been conducted in European countries. In a re trospective cohort study, Schalch et al. (2001) evaluated a psycho-educational nutriti onal program for diabetic patients. Sixty-five type 2 diabetics, divided into two groups 2a (BMI < 30 kg/m2, n = 34) and 2b (BMI >= 30 kg/m2, n = 31), were evaluated tw o years after receiving a week of in-hospital patient education. Pa tients participated in interactive dietetic
42 workshops in addition to receiving educ ation about diabetes self-management. The outcomes measured in this study were caloric intake, protein intake, lipid intake, carbohydrate intake, saturated fatt y acids intake, cholesterol intake, and fiber intake (Schalch 2001). This study found that two years afte r the one-week in-hospital training, type 2b diabetics reduced their caloric intake by 300 kcal per day (P < 0.05) while type 2a diabetics' caloric intake remai ned unchanged from baseline. The type 2b group also significantly reduced their protein intake (1.6 + 0.1 before versus 1.4 + 0.1 after, P < .05), whereas the ty pe 2a group remained unchanged. Lipid intake also decreased in the type 2b group from 92 + 7 at baseline to 77 + 5 after two years (P < 0.04). At baseline, car bohydrate intake in the type 2b group met European Association Study for Diabetes guidelines, with carbohydrate intakes accounting for between 45-55% of tota l caloric intake and this remained unchanged in two years. However, the type 2a group si gnificantly improved their carbohydrate intake from 15% at baseli ne to 38% after two years (P < 0.02). Type 2b diabetics significantly decreased thei r saturated fatty acids intake over the two years from 33.3 + 3 grams per day to 25 + 2 grams per day (P < 0.05). Cholesterol and fiber intake did not signifi cantly change in either group over the two years (Schalch 2001). In a four-year randomized controlled clin ical trial conducted in Italy, Trento et al. (2002) looked at the effects of a lifestyle intervention by group care on preventing deterioration of type 2 diabetics. In this study, the authors compared
43 traditional individual diabetes care with in teractive group care. A total of 112 patients were randomized to either i ndividual education (n = 56) or group education (n = 56) for 52 m onths. Group education consisted of sessions held every three months with one or two physicians and an educationist. This program included the following health educ ation issues related to type 2 diabetes: risks of being overweight, meal planning, physical exercise, checking and improving metabolic control, smoki ng cessation, medication compliance and preventing diabetes-related complications. The curriculum was divided into four sessions and was repeated in years one and two, then spread over seven sessions in years three and four to av oid repetition, and allow for in-depth discussion. The control group was schedul ed for three monthly visits, or as frequently as necessary, in the gener al diabetes clinics (Trento 2002). Primary outcomes included body weigh t, fasting blood glucose, HbA1C, blood lipids, knowledge of diabetes, health behavior, and quality of life. Secondary outcomes included assessment of diabetic retinopathy, hypoglycemic medication, microalbuminuria, systolic and diastolic blood pressure, Framingham score for cardiovascular risk, and anti-hypertensive a nd lipid-lowering medication. HbA1C levels increased in the control group but not in the intervention group (p < 0.001) The intervention group also saw a reduction in BMI (p < 0.001), and an increase in HDL-c holesterol. Knowledge of diabetes, quality of life, and health behaviors also im proved in the group care patients (p < 0.001), and worsened in the control group (p = 0.004 to p < 0.001). Dosage of
44 hypoglycemic medications decreased (p < 0.001), and retinopathy progressed less (p < 0.009) in the intervention group as compared to the control group. Diastolic blood pressure and relative card iovascular risk (p < 0.05) decreased in both the intervention and control groups Group care required 196 minutes and $756.54 per patient, whereas individual ca re required 150 minutes and $665.77 per patient, resulting in an additional $2. 12 spent per point gained in the quality of life score. These results indicate t hat group care in not only financially and logistically feasible but it helps type 2 diabetes improve their condition (Trento 2002). Another study looked at the effectiv eness of group education for diabetes. In this study Sarkadi and Rosenqvist (2001) field-tested a group diabetes education program taught by pharmacists. Participants were recruited through advertisements in local newspapers and a monthly pharmacy magazine. Participants (N = 105) joined the field te st by a self-report ed diagnosis of type 2 diabetes. Once in the study, participa nts received a questionnaire through the mail to obtain demographic information. HbA1Cs were collected at baseline, six and 12 months. The Hemoglobins were se lf-sampled with the aid of a nurse on the first sampling. Participants were considered to have achieved "glycemic success" if they achieved the target value of a HbA1C < 6.5% and/or progressively decreased HbA1c levels based on baseline values. The mean HbA1c significantly decreased after six months of pharmacist led education. The target HbA1c of < 6.5% was
45 seen in 51% after six months of educat ion, and in 61% after 12 months of education (P = 0.023). Initial HbA1c and BMI were the most important predictors of glycemic success with age, sex, duration and civil status having no effects. After initially decreasing their HbA1c, overweight individuals relapsed, showing the need for long-term support for weight management. Those who experienced loneliness also had trouble keeping HbA1c levels lower, demons trating interaction between diet, self-care, and soci al relations (Sarkadi 2001). In a study using a computer-gener ated system that provides type 2 diabetics with uniquely forma tted and personalized reports of diabetes status and goals on changes in HBA1c levels, Levetan et al. (2002) found that such programs can be useful. A total of 150 diabetics were randomized to receive either standard care or the intervention, which included a computer-generated 11" x 17" color poster showing the patient's HbA1c status, goals, and personalized steps to help goal achievem ent. All of the 150 patients received diabetes education during the three months prior to enrollment. HbA1cs were taken at baseline and si x months (Levetan 2002). There were no significant differences between control and intervention patient groups at baseline in terms of age, sex, education level, race, HbA1c and lipid levels. In patients with a baseline HbA1c > 7.0% there was an 8.6% reduction in HbA1c among control subjects com pared with a 17.0% decrease in intervention subjects (P = 0.032). Am ong patients experiencing a decline in HbA1c, it was most significant in the in tervention group who reduced their HbA1c
46 by 24.2% (P = 0.0048) compared with the control group who reduced their HbA1c by 13.3% (P = 0.0048) (Levetan 2002). Another study by Surwit et al. (2002) focused on stress management education as a means of reducing HbAlc levels in type 2 diabetics. In this study, 108 patients were randomized to either t he control group, which received five sessions of group diabetes education, or the intervention group, which received the same education plus stress managem ent training. During the one-year study, subjects had HbA1c tests and questionnaires assessing perceived stress, anxiety, and psychological health administe red at regular intervals (Surwit 2002). Patients who received stress managem ent training showed a small but significant decrease in HbAlc levels of 0.5% compared with those in the control group who received only diabetes education. Surwit et al. ( 2002) argue that even small decreases in HbAlc levels are associated with significant reductions in microvascular complications. In additi on, after one year, 32% of the stress management group had HbAlc levels that were lower by > 1.0% compared with only 12% of the control subjects (Surwit 2002). In their study, Kulzer et al. (2002) l ooked at the efficacy of three different type 2 diabetes education pr ograms. The first is a self-management oriented program with group lessons (MEDIAS 2), se cond is a combination treatment with group lessons and individual counsel ing (combination), and third is a conventional structured education pr ogram focusing on knowledge transfer (standard). A total of 193 subjects with type 2 diabetes (age 55.5 + 7.2 years;
47 HbAlc 7.8 + 1.7%; BMI 32.1 + 3.9 kg/m2) were randomized to one of the three education interventions. The outcome vari ables were glycemic control and body weight 12 months after the education programs were comp leted. There were no relevant differences in outcome variables at baseline. The authors found a significant (p = 0.014) advantage in glycemic control in the MEDIAS 2 group ([DELTA] HbA1c 0.7 + 1.4%) compared with combination ([DELTA] HbAlc 0.3 + 1.6 %) and standard ([DELTA] 0.1 + 1.5%). Body weight was the most significant improvement in the MEDIAS 2 group ([DELTA] BMI 0.9 + 1.5 kg/m2) compared with standard ([DELTA] BMI -0.5 + 1.6 kg/m2), and compared with the combinat ion ([DELTA] BMI 0.7 + 1.5 kg/m2). A study aimed at comparing type 2 diabetes Treatment As Usual (TAU) with Pathways to Change (PTC) was done to determine if PTC results in greater readiness to change, greater increases in se lf-care, and better diabetes control. Subjects were stratified by diabetes treatment and then randomized to TAU or PTC as well as being randomized to receiv e free blood testing strips or not. PTC consisted of personalized assessment r eports, self-help manuals, newsletters, phone counseling, healthy eating and/or smok ing cessation. A total of 1,029 recruited participants were assigned to one of three pre-action stages (from the Transtheoretical Model of Change): self-monitoring of blood glucose, healthy eating, or smoking (Jones et al. 2003). For the self-monitoring blood glucos e intervention, 43.4% of those receiving PTC and free strips moved to the action stage, as well as 30.5% of
48 those only receiving PTC. Twenty-seven percent of those par ticipants receiving TAU plus strips, and 18.4% of those rece iving TAU alone, moved to the action stage (P 0.001). In the healthy eating inte rvention, 32.5% of the PTC group moved from pre-action to action or maintenance compared with 25.8% of TAU group (P 0.001). In the smoking cessation intervention, 24.3% of the PTC group moved to action or maintenance compared with only 13. 4% of the TAU group (P 0.03). In those who moved to t he action stage in the self-monitored blood glucose intervention, all significantly decreased their HbAlc (P 0.001). Participants who received the healthy eating intervention decreased their percentage of calories from fat (35.2% in PTC compar ed with 36.1% in TAU, P = 0.004), increased their servings of frui t per day (1.89 compared with 1.68, P = 0.016), and increased vegetable servings (2 .24 compared with 2.06, P = 0.011). However, they did not decrease their weight (Jones et al. 2003). Izquierdo et al. (2003) compared diabetes education given through telemedicine versus in person. Type 2 diabetics (N = 56) were randomized to either receive diabetes education in pers on or via telemedicine (intervention group). Education consisted of three visits with nurses and nurse educators. Comparisons were made on HbAlc and questionnaires to assess patient satisfaction and psychosocial functioning as related to diabetes. Measurements were taken at baseline, after the diabet es education program, and three months after the last educational visit.
49 The telemedicine group reported high patient satisfaction compared with the control group. HbAlc improved from 8.6 + 1.8% at baseline to 7.8 + 1.5% immediately after education, and 7.8 + 1.8% three months after the last educational visit (P 0.001 unadjusted, P = 0.089 adjusted for BMI and age). Changes were similar in both the contro l and the telemedicine groups. The authors concluded that both forms of di abetes education are ef fective, and that patients enjoyed the telemedi cine method, making it a viable way of educating in the future (Izquierdo et al. 2003). In a study working toward the prevent ion of type 2 diabetes, Tate et al. (2003) looked at the effects of an Inter net behavioral counseling program aimed at weight loss in adults at risk for type 2 di abetes. A total of 92 overweight adults participated, with a mean age of 48.5 + 9.4 years, and a mean BMI of 33.1 + 3.8. Subjects were randomized to either a bas ic Internet or an Internet plus behavioral e-counseling program. Both groups received one in-person counseling session and the same core In ternet programs, and were asked to submit weekly weights. Subjects in e-counseling s ubmitted calorie and exercise information, and received weekly email behavioral counseling and feedback from a counselor. Weight and waist measurem ents were taken at baseline and 12 months. Analysis revealed that participants w ho received e-counseling lost more weight (-4.4 + 6.2 kg) after 12 months than t he basic Internet group (-2.0 + 5.7 kg) (P = 0.04). The e-counseling group also had greater decreases in
50 percentage of initial body weight (4.8 %) as compared with the basic Internet group (2.2%) (P = 0.03). The e-counsel ing group had a greater decrease in BMI (-1.6 + 2.2) compared with the bas ic Internet group (-0.08 + 2.1) (P = 0.03). Finally, the e-counseling gr oup had a greater decrease in waist circumference (7.2 + 7.5cm) compared with the bas ic Internet group (-4.4 + 5.7 cm) (P = 0.05). The authors concluded that email counsel ing, added to a basic Internet weight loss education program, could significantly increase weight loss in adults with type 2 diabetes (Tate et al. 2003). One study looked at patient sati sfaction with diabetes education workshops in rural Arkansas. Fiftynine patients and their family members attended half-day diabetes education wor kshops. Workshops lasted four hours and included diabetes information from physi cians, a pharmacist, nutritionist, and diabetes educator. Topics discussed included diagnosis and complications; updates on diabetes medications; lifestyle changes; foot care and sick-day care. Instruction was also given on how to r ead food labels, counti ng carbohydrates, calories and fat grams, along with simple exercises that could be done at home (Carter et al. 2002). Participants were asked to evaluate the program using a five-point Likert scale (1-poor, 2-fair, 3-average, 4-good, 5excellent). Patients and their families gave the program an overall rating of 4. 7. The lowest rating was 4.1 for the length of the program. Fac ilities were rated 4.4; educ ational content was rated
51 4.5; relevance of the information pr ovided was rated 4.6; and presenters knowledge of the topics was rat ed 4.7. (Carter et al. 2002). Education Programs for Lati nos with Type 2 Diabetes Studies have suggested that Lati nos with diabetes would like more education about diabetes and how to care fo r themselves (Piette 1999; Zierold et al. 1999). In one study, 70% of Latinos with diabetes responded, "yes" to the question, "Do you feel the need for more diabetes education?" Respondents who had diabetes for a shorter durati on felt more need for education than respondents who had the disease for a longer period of time and/or who had a family member who also had diabetes (Zie rold et al. 1999). Another study that used automated phone calls to provide di abetes education and self-care tips showed that Spanish-speakers were twice as likely to listen to the health messages than English-speakers. Spanish-speakers were also more likely to choose to listen to diet tips than Englis h-speakers. After 12 months of automated calls, most Spanish-speakers were still listening to the messages, whereas only 25% of English-speakers were still listening (Piette 1999). These studies suggest that, if more widely available, diabetes education programs would be accepted and utilized by Latinos. Several studies have focused on existing education programs aimed at Latinos with diabetes, and each has valuable information to offer as to what is important to emphasize when teaching t hese groups about the disease (Brown and Hanis 1999; Corkery, et al. 1997; Gagliardino and Etchegoyen 2001; Piette
52 1999; Quinn and McNabb 1999; Taylor, et al. 2000; Zierold, et al. 1999). National Standards suggest that people with diabetes should have a basic understanding of diabetes, and be aware of the following issues associated with diabetes: psychological adjustment, medications, hygiene, family support, nutrition principles, exercise, the signs and symptoms of high or low blood sugar, monitoring blood glucose, illness managem ent, use of the health care system, long-term complications, and community re sources (in Brown & Hanis 1999). All of these principles need to be presented in a culturally sensitive manner to the Latino community living in the United Stat es so that they can understand these issues as well as white non-Hispanics. One study and education program that has been particularly successful is the Starr County study in Texas that focuses on diabetes education among Mexican-Americans. Thr ough data obtained in focus groups and individual interviews, the Starr County study found six key points important to MexicanAmerican diabetics in this community. Firs t is that there are explicit cultural preferences for dietary choices; second, that although the community is the poorest in the state, ther e were dramatic differences in wealth within the community; third, the impor tance of lowering blood glucose levels; fourth, the belief that nothing could be done about type 2 diabetes because so many people in the community have it or have a family member who have it; fi fth, that simple but interesting dietary changes would have to emphasized given low literacy rates and lack of interest in learning complex diet exchanges; and sixth, the
53 importance of including family mem bers in education and support (Brown & Hanis 1999). As a result of this information obt ained in the focus groups, the Starr County Study designed and implemented a diabetes e ducation program that focuses on culturally sensitive dissem ination of knowledge for the management of diabetes. The Starr County study has par ticularly focused on diet and nutrition because they believe dietary improv ements may have the greatest positive impact on diabetes management. The study strongly encourages healthy adaptations to traditional Mexican recipes. Primary dietary goals were to reduce portion size, reduce fat intake, and reduce sodium intake. Bilingual health educators and dieticians were hired from the community to provide classes on diabetes basics, diet and exercise. In addition, the health educators demonstrated how to cook healthy Mexican meals. Family and friends were encouraged to attend these sessions. Part icipants were also shown videotapes made with other diabetics in the communi ty that included basic diabetes information and care informa tion (Brown & Hanis 1999). The Starr County education program wa s well received in the community. Participants especially like seeing people they know in the videos, making them more at ease with having diabet es and more likely to engage in the recommended self-care activities. Participants also found the inclusion of traditional foods prepared in a healthy manner a positive of the program. It was also important to participants that fam ily members and friends were included in
54 the intervention. Participants in the st udy significantly reduced their hemoglobin A1C levels, showing the success of the program (Brown & Hanis 1999). The Starr County project is an on-going education program t hat has proven one of the most successful to work with Latinos. Another study by Corkery et al. (1 997) also used bilingual community health workers to provide diabetes education to Latinos. This study found that participants in the education program were more likely to complete the program when there is a bilingual community health worker present (80% completed) compared to an educator from another comm unity (47% completed, p = 0.01). The presence of a community health worker did not, howe ver, significantly affect diabetes knowledge, self-care behavior or HbA1c improvement. The education itself had positive effects on these outco mes such as increased knowledge levels and self-care practices, and glycohemoglobin levels improved fr om a baseline of 11.7% to 9.9% at completion (p = 0. 04) and 9.5% at follo w-up (p < 0.001). However, the community health worker only increased the chances of the participant completing the program. Since more knowledge is obtained by completing the program, the a ffect of the community health worker was indirectly positive in improving diabetes knowledge, self-care and HbA1C. In addition, Taylor et al. (2000) employed Latino abuelas (grandmothers and grandmother-figures) to provide nutri tion education to low-income Latino mothers. The program entitled La Cocina Saludable (The Healthy Kitchen) used these older women because they are respected in the Latino community,
55 especially for their knowledge of family, cooking, health and nutrition. The study found that this type of progr am, which uses older female community members, is effective in changing and improving nut rition related knowledge, skills and behaviors that lead to healthy lif estyles (Taylor et al. 2000). Another education program aimed at reducing certain risk factors associated with diabetes in Latinos used b ilingual lay health educators to conduct home-based education (Quinn et al. 1999). Eight to ten participants at a time met at the health educator's home for short education on nutrition, diet and exercise. After that, the health educator visited each participant's home once a month to provide individual assistance in meal planning, food preparation and exercise. The results of this program were that participants were able to significantly increase the amount of exer cise they do each week, and modify their diets to be healthier (Quinn et al. 1999). One education program included 10, tw o-hour classes in Spanish. The classes were taught be a diabetologist, a dietician or a psychologist. Classes included 12-14 patients and were taught biweekly, covering topics such as diabetes basics, complications, nutrition, ex ercise and medications. There were a total of 79 subjects (53 women, 26 men), age 57 + 11 (mean + SD) years who had type 2 diabetes 6.2 + 5.6 years. Weight, HbA1c, and lipid profile were measured at baseline and at the end of the 10-session program. These measures were available in 41 patients at six and 12 months after the program ended, and in 30 patients at two years (Caballero et al. 2002).
56 After the education program, there was significant improvements in weight, HbA1c, and cholesterol (the authors do not give the statistical significance.) However, after six months, HbA1c levels returned to what they were at baseline, and cholesterol levels returned to baseline after one year. Weight tended to be lower but not significa ntly different in the follow-up. The authors concluded that a cu lturally appropriate education program for Hispanics can be effective, but there needs to be continuous follow-up and classes to encourage improvements to conti nue (Caballero et al. 2002). Another study conducted in Costa Rica looked at the effectiveness of a type 2 diabetes education intervention in type 2 diabetics in rural Costa Rica. Subjects (N = 75; mean age 59 years) we re randomized to the intervention or control group. All subjects received basic diabetes education. Participants in the intervention group also received 11 w eekly 90-minute nutrition classes and participated in triweekly walking sessions that lasted 60 minutes each. HbA1c, fasting plasma glucose, total cholestero l, triglycerides, HDL and LDL cholesterol, height, weight, BMI and blood pressure were measured at baseline and at the end of the 12-week study (G oldhaber-Fiebert et al. 2003). The intervention group lost 1.0 + 2.2 kg compared with a weight gain in the control group of 0.4 + 2.3 kg (P = 0.028). In addi tion, fasting plasma glucose decreased in the inte rvention group 19 + 55 mg/dl compared with an increase in the control group 16 + 78 mg/dl (P = 0.048). HbAlc decreased in the intervention
57 group 1.8 + 2.3% and in the control group 0.4 + 2.3% (P = 0.028) (GoldhaberFiebert et al. 2003). Conclusion These studies show both the need fo r, and variety of, health education programs for Latinos with diabetes. Many things have to be taken into consideration when designing a diabetes education program for Latinoslike cultural values such as simpatico, respeto, familismo and fatalismo Also important is the need for diet and nutriti on recommendations that are culturally relevant. Most successful programs have used bilingual health educators who are from the community where the intervention takes place. The following chapter, Chapter Three, discusses the methods used in the FHLS and this smaller sub-study. In addition, the four primary research questions are presented for which the rest of this thesis has been laid out.
58 Chapter Three Methods This chapter discusses the methods by which the data was acquired during the internship. This chapter prov ides descriptions of each of the sites involved in this internship. This chapter also outlines the research questions and the methods used to address those question s. This is followed by a discussion of the limitations involved with the resear ch methods used for this internship and thesis. The research for this thesis was conducted during the fall of 2002 and the spring of 2003. Goal of the Florida H ealth Literacy Study The overall goal of FHLS is to impr ove the health literacy of Medicaid and uninsured type 2 diabetics and hypertensives in community health centers in Florida through health education designed at a low health literacy level, and taught by qualified bilingual health educ ators. The education programs are designed to improve patients': understandi ng of their health; self management of their health; medication compliance; health outcomes; quality of life; and communication with health care pr oviders (Perrin et al. 2003). FHLS was started in one community heal th center in Florida with a pilot study. Following the pilot, appropriate chang es were made to program materials, and the full study began in May of 2002. Fr om 48 health centers for which data
59 were available, the 14 best matching pairs were identified (N=28) Each pair was then randomly assigned as either an interv ention (experimental) or "usual care" (comparison) site. One of the comparison sites dropped out of the study, leaving 27 health centers to participate. Thus the program is being implemented in 27 community health centers; 14 clinics are in tervention sites; the remaining 13 sites are comparison sites. Clinics were ma tched using Euclidian distances for the following variables: comparable services and programs; staffi ng configurations; and patient characteristics. The intervention sites received Pfizer's For Your Health or Para Su Salud program. The usual care sites did not receive the program and were asked to provide their "u sual" services to patients with type 2 diabetes and/or hypertensi on (Perrin et al. 2003). Internship Goals and Research Questions Since this internship was a smaller substudy as part of the larger FHLS, it was not necessary to design a full study but, rather, to use some of what was already being done in the lar ger study and to expand on it. FHLS involved the implementation of a type 2 diabetes and hypertension educat ion program. The education program was desi gned both in English and Spanish and bilingual (English and Spanish) health educators were hired, when possible, in all sites (12 of 14 sites.) The Spanish portion of the program was directly translated from the English version of the progr am. Therefore, the goal of this internship was to specifically look at t he Spanish portion of the program for its language and cultural appropriateness fo r the diverse Spanish-speak ing Latino population in
60 the community health centers in Florida. Thus the research questions were as follows: Research Question 1: Is the l anguage and presentation of the Spanish curriculum appropriate? Research Question 2: What iss ues are important to the SpanishSpeakers in relation to diabetes? 2a. What are the causal i deas and understanding about diabetes? 2b. What symptoms associated with diabetes are discussed? 2c. What foods and dietary iss ues are commonly mentioned and discussed? 2d. Is alcohol discussed? If so, what is said? 2e. Is ideal body image discu ssed? If so, what is said? 2f. What is discussed about ex ercise and barriers to exercise? 2g. Are folk illnesses discussed in relation to diabetes? If so, what is said? 2h. Are home or folk remedies di scussed? If so, what is said? Research Question 3: What are the overall experiences with the program of health educators and the Spanish-speaking patients? 3a. What issues are involved in the Spanish-speaking classes? 3b. What is the overall opini on of the program materials? 3c. What prevents patients from coming to classes or meetings with the health educator? Research Question 4: What other i ssues and core cultural values are involved in participating in this program and navigating the health care system in general? Internship Location The internship took place in 12 federally funded community health clinics with Spanish-speaking patients across the state of Florida. This section summarizes the information the clinics pr ovided to the FHLS coordinators after they were selected for the study. The information focuses on Medicaid patients, and does not provide information on uninsured patients as they were not
61 originally part of the study. See Appendi x A for a table of Services Information that were provided by some of the clinics described below. Site #20 employed two full-time primar y care physicians, three full-time nurse practitioners, and one full-time RN or LPN. This staff served a patient population of 1,991, 286 of whom are Medicaid recipi ents. There were 43 reported Medicaid patient s with diabetes. The clinic had 7,538 patient encounters per year, 1000 of those with diab etics. Fifty-two percent of the patient population was non-His panic/Latino White, 21% was Hispanic/Latino, and 24% was non-Hispanic/Latino Bl ack. The clinic reported 77 migrant or seasonal farm-worker patients. The c linic did not report having any diabetes or diet and nutrition health education. This clinic al so did not provide any of its services information. Site #21 also employed just one fulltime primary care physician and 1101 patients, 183 of who are on Medicaid. The clinic reported 12 di abetic patients on Medicaid, and approximately 3,450 pati ent encounters per year, 378 of those with diabetics. Sixty-one percent of the patients at this clinic were nonHispanic/Latino White, 34% Hispanic/Lati no, and 2% non-Hispanic/Latino Black. The clinic reported 23 migrant or seasonal farm-worker pati ents. This site did not provide any diabetes or diet and nutrition cl asses, and it did not provide any of its services information. Site #24 employed one full-time prim ary care physician and one full-time physician assistant. The clin ic reported a total patient population of 2,428, 509 of
62 whom are Medicaid patients. Forty-five of those Medi caid patients were reported as diabetics. The clinic had 7,971 patient encounters per year, 631 of those with diabetics. Seventy-seven percent of the patient population was nonHispanic/Latino White, 17% Hispanic/Lati no, and 4% non-Hispanic/Latino Black. The clinic did not report any diabetes or diet and nutrition education given at the clinic, nor did it report any of its services information. Site #26 employed one full-time primar y care physician. The physician has a total of 2029 patients at this clinic, 212 of whom were Medicaid recipients. The clinic reported 17 Medicaid patient s with diabetes. The clinic had 6,722 patient encounters per year 576 with diabetics. Si xty-nine percent of the patients were non-Hispanic/ Latino White, 18% were Hispanic/Latino and 7% were non-Hispanic/Latino Black. This si te reported 25 migrant or seasonal farmworker patients. The clinic did not have any diabetes or diet and nutrition education. The clinic also did not provide any services information. At the start of FHLS site #30 empl oyed three full-time primary care physicians, four full-time physician assi stants, one part-time nurse practitioner, one full-time RN and/or LPN, and three fulltime outreach workers. The staff provided care for 4,834 clinic patients, 684 of whom were on Medicaid. The clinic had 13,936 patient encounters per year. The patient population is 75% Hispanic/Latino, 22% non-Hispanic/Latino Wh ite, and 4% Black. The clinic did not report holding any diabetes or di et and nutrition education classes.
63 Site # 31 employed seven full-time pr imary care physicians, one full-time nurse practitioner, 17 full-time physician assistants, three full-time RNs and/or LPNs, one full-time pharmacist and six full -time outreach worker s. The clinic had a patient population of 13,256, 1,663 of those on Medicaid. The clinic had approximately 41,442 patient encounters per year. Sev enty-one percent of the patients at this clinic were Hispanic/ Latino, 20% were nonHispanic/Latino White and 5% were non-Hispanic/Latino Black. The c linic did not offer diabetes or diet and nutrition education. Site #34 is located in a rural area. At the beginning of FHLS, the clinic employed approximately three full-time physicians, three full-time RNs and/or LPNs and one full-time pharmacist. This clinic did not employ any outreach workers, nurse practitioners or health educators when the study began. The clinic had a total of 4,056 patients, 1,292 of whom were Medicaid patients. There were a recorded 48 Medicaid patients with diabetes. The clinic had 12,534 patient encounters per year, 848 of those with diabetics. The clinic did not report having any health education classes for diabet es or diet and nutrition. Seventyfive percent of the patients at this c linic were non-Hispanic/Latino White, 21% were non-Hispanic/Latino Black, and 4% were Hispanic/Latino. The clinic reported having 28 seasonal farm-worker patients. T he following table summarizes the services pr ovided at site #34. Site #37 employed a total of three prim ary care physicians on staff, three nurse practitioners, one physician assistant, five RNs and/or LPNs, one full-time
64 pharmacist and one full-time outreach work er. The staff supported a clinic patient population of 5,683, 1,350 of whom are Medicaid patients. The clinic had approximately 23,125 patient enc ounters per year. The pati ent population at this clinic is 65% Hispanic/Latino, 30% non-Hispanic/Latino White and 3% nonHispanic/Latino Black. The clinic did not report teaching any diabetes or diet and nutrition classes. Site #39 employed four full-time prim ary care physicians, three full-time nurse practitioners, 10 full-time RNs and/ or LPNs, one full-time pharmacist, one full-time outreach worker, and one part-time health educator. The clinic had 7,950 patients, 1,240 of whom were on Medicaid. The clinic had an average of 27,384 patient encounters per ye ar. Fifty-seven percent of the patients at this clinic were Hispanic/Latino, 39% were non-Hispanic/Latino White, and 2% were non-Hispanic/Latino Black. Although the c linic had a part-time health educator, it did not provide information on how many, if any, diabetes education classes were taught. Site #42 employed one full-time prim ary care physician and one full-time RN or LPN. The clinic had 788 patents, 123 of which are on Medicaid. The clinic reported one Medicaid patient with diabetes. The clinic had an average of 3,080 patient encounters per year, 43 of those wit h diabetics. Ninety-two percent of the patients were Hispanic/Latino, 4% were non-Hispanic/Latino Black and 2% were non-Hispanic/Latino White. This clinic reported 625 migrant or seasonal farm-
65 worker patients. The clinic did not provide diabetes or diet and nutrition education. Site #43 had five full-time primary ca re physicians on staff, one full-time physician assistant, ten full-time RNs and/or LPNs, and one full-time outreach worker. This staff had 9,060 patients, 2,122 of who were Medicaid recipients. The clinic reported 14 diabetic patients on Medicaid. This site had approximately 42,545 patient encounters per year, 2,138 of those with diabetics. Forty-seven percent of patients at this clinic were Hispanic/Latino, 29% were nonHispanic/Latino Black and 7% were non-Hi spanic/Latino White. This clinic reported having 2,142 migrant or seasonal farm-worker pati ents. This clinic did not provide any diabetes or di et and nutrition education. Internship Timeframe I was hired on to the FHLS in May of 2001. However, the research portion of my time on the project fo r this thesis did not begin until August of 2002. The year prior to the official beginning of t he internship was spent writing the project implementation plan, finalizing the educat ional materials, setting up the project pilot site, and training health educa tors to implement the program. I was hired for 20 hours per week fo r the first year, and 30 hours per week the following year. Given the extensive time spent tr aveling, a good portion of those hours was spent on the road. During the initial time of the internship in the fall of 2002, 20-25 hours per week were spent traveling to the 14 implementation sites, and observing classes taught by the health educator. I took notes during
66 the class observations and clinic visits ; about two hours per week were spent typing the notes. I spent the remaining 5-10 hours per week working to collect relevant articles via the Internet or from the USF library and in terlibrary loan, and subsequently, comprise the literature review in Chapter Two. During the second part of the intern ship in the spring of 2003, during which interviews were conducted wit h health educators, about 20-25 hours per week were spent traveling to implem entation sites to m eet with the health educators to discuss how the project was going, and to observe classes if they were still being taught. The remaining 510 hours per week during this time were spent interviewing health educators. Most of the health educator interviews were conducted over the telephone, which is discussed later. Literature Review Prior to and throughout the internship, I conducted an in-depth search for the literature review in the previous c hapter. The literatur e review had to be conducted for both the anthropol ogical and epidemiological backgrounds for this thesis. Since these two disciplines are very different in nat ure, epidemiology being more quantitative and straightfo rward and anthropology being more qualitative and descriptive, t he literature searches were conducted in different ways using different Internet search engines. First, I conducted the epidemiology por tion of the literature review, looking for other health education programs for di abetes that were measuring specific outcomes such as a reduction in blood sugar levels, weight loss, or reduction in
67 diabetes related ailments such as b lindness, kidney failure, neuropathy, or amputations to name a few. The first search was conducted on-li ne using the Medline search engine. The terms used for this search were "diabetes" and "health education" in the keywords of the articles between the years 1993-2003. This search yielded 1,974 results. By looking at the abstracts of these resu lts, articles were chosen for their relatedness to this project. In addition, it was more desirable to use articles and research that had both an experimental and control group, making them more relevant to an epi demiological discussion. Once the articles from this search were obtained and read completely, more articles were obtained from the references in the read articles. The second search for anthropologica l literature was a bit more time consuming and complicated since anthropol ogical research, especially that focusing on health, is often published in a variety of journals, many of which are not anthropological. For this search, I fo cused on health issues for Latinos, folk illnesses, and Latino nutritional patterns. This search was conducted using a variety of Internet search engines including First Search, Social Scienc e Abstracts, JSTOR, and Ovid. These search engines yielded hundreds of results, all of which were carefully examined for their relevance to this thesis and thei r anthropological significance. Articles were sorted and read thoroughly and, from t heir references, more articles were obtained. With such a plethora of informa tion from both searches, it was difficult
68 to decide what to use and what to eliminat e. However, it soon became clear that some articles were more relevant and helpful to this endeavor than others. Sampling FHLS Study Patients Since the research conducted during th is internship was already part of a larger study, the sampling was done for me through the larger study. Patients eligible for the FHLS were those who are 18-64 years of age, on Medicaid or uninsured, had been diagnosed with hypertens ion and/or diabetes and had been "out of control" in the last six months. Pa tients were "out of control" if they have had a random blood sugar reading of 200 mg /dl or above, a fasting blood sugar reading of 126 mg/dl or above or a HbA1C of 7 or above, and/or a blood pressure reading in which the systolic reading is 140 or above, or the di astolic reading is 90 or above. Patients could either be English-speaking or Spanish-speaking. The ethnicity of each study patient was nev er identified on any paperwork. The only way to determine ethnicity was by the health educators asking or the patients offering the informa tion. Unfortunately, many of the health educators and clinics were unaware of the country of or igin of their patients, except in those areas where one ethnicity is the majority such as in well-known Mexican migrant farm-worker areas. If the patient was eligible for the st udy, the doctor referred the patient to the health educator. The health educator explained the program and the study and asked if the patient wanted to enroll. Once the patient signed the informed
69 consent s/he went through a baseline inte rview and clinical measures, attended the three diabetes classes and/or one hy pertension class, and participated in follow-ups at two, three and six months from enrollment to collect baseline measures again. For the research portion of this internship, only the Spanishspeaking patients with type 2 diabet es were part of my sample. Health Educators The sample for the health educator portion is limited to the 13 bilingual health educators. Some sites were unable to find bilingual health educators to fill the position and became "English-only" si tes. The health educators in the English and Spanish sites were all bi lingual Latinos, except for one who was Haitian but fluent in Spanish, and were hi red through a job advertisement placed by the University of South Florida College of Public Health in local newspapers, on the Internet, and at various colleges ac ross the state. While USF helped to find qualified health educators, it was the clinics final decision on whom to hire. Qualifications for the health educ ator position were as follows: Minimum Bachelor prepared in health education or other health related field; experience in health education and patient coun seling; basic computer skills; excellent written and oral communication, organizati onal and problem solving skills; ability to interact with members of the community in a professional and friendly manner Preferred Masters prepared Health Educator wi th experience in diabetes and/or hypertension education; experience in clinical settings; experience with diverse populations; CHES certific ation (Perrin 2003). The health educators hired were from diverse backgrounds and qualifications. From the 13 health educat ors only 10 remained in the sample for interview purposes because three left the project early.
70 Seven of the health educators were fr om Puerto Rico, six of these were female; one was a male. The male had previous experience as a health educator and fitness expert. The qualified females from Puerto Rico included an administrative assistant who had been very active and familiar in the community; two nurses who had also been active in community outreach at one time or another; and three who had been health educa tors, one of whom had an MPH. Two of the health educators, one fema le and one male, were medical doctors from Cuba. The woman had practiced m edicine in the U.S. while the man was still trying to obtain records from Cuba to prove he is a physician. Three of the health educators, all female, were born in the U.S. but thei r parents were from Bolivia, Panama and Honduras, respectively. Two of these women were masters students in public health and ant hropology at USF, while the other had some experience in health education. Finally, one female health educator was from Haiti and had previously worked as a case manager at the clinic for which she was hired for FHLS. Once the health educators were hired, the implementation team (Kay Perrin, PhD; Somer Goad, MPH and myself) spent two days training the health educators about how the study would be conducted, and on type 2 diabetes facts if they prev iously did not know much about the disease. Three of the health educators left t he study for different reasons. One fell ill and was unable to continue her position, one got another job in a higher paying health education position, and one did not feel that she could stay at the clinic
71 because the administration was not gi ving her the pay and benefits she was promised when hired for the study. Clinic Observations The implementation team traveled to a ll 14 interventions sites at least one time per month for 12 months. This allo wed for clinic observations during site visits. A good amount of time was spent in the clinic waiting rooms and in the health educator offices, which are located near exam rooms. Detailed field notes were taken during site visits and later ty ped into my personal computer. General observations were noted such as who was in the clinic including patients, family members of patients, and clinic staff. Notes were taken about how many people were in the clinic waiting rooms as well as the overall atmosphere of the clinics, whether they were crowded and loud or em pty and quiet. In addition, notes were taken on general interactions with clinic staff, among clinic staff, and between clinic staff and their patients. Class Observations During the fall of 2002 and spring of 2003, I traveled to 12 sites to observe the bilingual health educators teaching the type 2 diabetes classes in Spanish. Classes had anywhere from one to eight Spanish-speaking patients. Classes were taught using flipcharts that use few words and many pictures to explain either type 2 diabetes or hy pertension in an easy to understand format. Patients also followed along in their own workboo ks. Classes lasted from one to three
72 hours, depending on how many patients we re in the classes, the health educator's method of teaching, and/ or the chapter being taught. During the classes, I acted strictly as an observer rather than as a participant-observer. Occa sionally, the health educators or patients would ask an opinion of me, or for an answer they did not know, but this did not happen very often, and I was usually busy taking notes on what was transpiring in the class. In total, I observed 21 Spanish classes. Detailed hand-written field notes were taken during the classes in a notebook and later typed into my personal computer, to which only I have access. As much as possible, what happened in the classes was noted with particular attent ion to interactions between the health educator and the patient, patient intera ction and class involvement, discussions of food and diet, and any cultural concerns related to diabetes. Quotes were taken as often as possible. Patients were not identified by their names but rather by pseudonyms or numbers. Interviews In addition to class observations, in-depth interviews were conducted (in English) with the bilingual health educator s who teach the Spanish curriculum to get their opinions and experiences with the program. A st ructured interview guide was developed based on the issues in the literature review and the research questions (see Appendix B) Dr. Fort hofer, my internship supervisor. My thesis committee made comments and correct ions to the interview guide before
73 the final version was sent to and approv ed by the Institutional Review Board (IRB) at USF. Interviews were conducted in pers on when possible, but more commonly over the telephone as some of the sites ar e considerable distan ces from Tampa. Interviews lasted anywhere from 30 to 60 minutes. For the most part, the interviews were casual and friendly as I had become well acquainted with the health educators over the year. Since the interviews were commonly conducted via telephone, detailed notes were tak en during the interview, rather than recording them. After notes were taken, the interviews were immediately typed so that no valuable information was misconstrued or forgotten. Patient Satisfaction Survey Much later in the study, the impl ementation team thought it would be prudent to not only collect the data on pat ients from their baseline and follow-up interviews, blood sugar readings and medical chart reviews, but also to collect the patients actual opinions of and experiences with the program. The implementation team, Co-PI Kay Perrin, Implementation Coordinator Somer Goad, and myself, developed a patient sati sfaction survey using what we thought the patients might want to tell us bas ed on class observations and discussions with the health educators. The survey was never tested with the patients as there was no time for this process, and the questions were basic and left room for additional comments by the patients.
74 Once the English version was complet ed, I was responsible for translating the survey into Spanish. As has been evident in the past, it can be disastrous when an English-speaking perso n, even with fluency in Spanish, tries to translate something into writing. Therefore, I asked a friend who is a native Spanishspeaker to help translate the survey. Once this was completed, it was sent to four of the Spanis h-speaking health educators for review and comment. Two of them responded with similar comments and appropriate changes were made so the survey would be most suitable for the diverse Spanish-speaking population in the community health clinics. The implementation team t hen sent both versions of the survey to the rest of the FHLS team, consisting of seven others, for their review and comment. Since the patient satisfaction survey was conceived so late in the study, there was not time to test it with patients. Final changes were made after comments from the FHLS team, and the survey was sent to a ll of the health educators with a letter (see Appendix C) explaining t he survey. In addition, self-addressed stamped envelopes were provided so that the patients could take the surveys with them and complete them anonymously as it asks questions about the health educator and his/her abilities. The surve ys came directly to the implementation team, and were entered into an Access databas e as they were received. A total of 31 Spanish surveys were returned.
75 Limitations There were many limitations to this in ternship. The first was that it was difficult to observe as many classes as would be necessary to achieve statistical power in the data analysis. Some clini cs did not have many patients enrolled in the program because patients di d not meet the eligibility criteria for the program. In addition, patients did not show up for cl asses for a variety of reasons including but not limited to: lack of desir e to participate; lack of ti me; lack of transportation; and job constraints. Pati ents also dropped out of t he study for a variety of reasons including those ju st mentioned and the fact that many patients, especially migrant farm-workers, moved away and were unable to be located. Since the clinics spanned the entire state of Florida, an d class schedules in each clinic varied, it was difficult to see all of the Spanish classes I would have liked in one week. Despite the real and potentia l limitations involved in the class observations, I was able to observe 21 Spanish-speaking classes, almost all of which had at least three patients. Another weakness was my limited S panish-speaking ability. While I understood most of what was being said in the Spanish-speaking classes, I may have missed some of the discussion or misi nterpreted what was being said. One way I resolved this was to take detailed notes, and then to clarify points with the health educator when the class conclud ed. Furthermore, it would have been ideal to interview program patients to get direct opinions of the program. However, due to time and travel constrai nts, my limited Spanis h-speaking ability,
76 and the fact that patients were already gi ving so much time to the program and study, it was too inconvenient to obtain interviews. However, interviewing the health educators proved very useful si nce they are deeply involved with their patients and the program, and they had the most to say about what does and does not work in the Spanish curriculum. One drawback in interviewing the health educators was that three of the Spanish-speaking health educators left the program before I had a chance to interview them about their opinions o f, and experiences with, the Spanish curriculum. It is likely that some va luable information was missed from these health educators. Furthermo re, most of the health educators were interviewed over the telephone. While this method worked fine, it may have elicited more information had the interviews been conduc ted in person. However, I feel confident that the 10 interviews I was able to complete provided ample and thorough information for the purposes of this thesis. A further limitation involved the patient satisfaction survey. The survey was conceived late in the study and there was no time to do proper pre-testing. The evaluation team of FHLS was not very interested in using the survey for its statistical review and it was not as im portant to the stud y. However, the implementation team felt it was important to at least a ttempt to get the patients perspectives of the educati on program. Thirty-three surveys were completed and returned and should prove useful in under standing what patients thought of the program.
77 Conclusion The implementation phase of the FHLS continued into October of 2003 but because of time constrai nts, I limited my data collect ion to the fall of 2002 and the spring of 2003. C hapter Four discusses the results from the data collected during this internship. Chapter F our also discusses the results from this sub-study. The results are presented in the context of the research questions that were presented in this chapter.
78 Chapter Four Results This chapter discusses the results fr om the data gathered from interviews with the 10 health educators, observations of classes and clinics, and the patient satisfaction survey. Data were coded by themes discussed in the literature review, and other important aspects relev ant to this diabetes education program. The computer software program Ethnograph was used to code the data. The results of the data are presented in t he context of the research questions presented in Chapter Three. Research Question 1: Is the language and presentation of the Spanish curriculum appropriate? One hundred percent (100%) of the health educator s said that the low literacy level of their Spanish-speaking pat ients was an issue. All of the health educators said that almost all of their patients were illiterate in English and most of them in Spanish as we ll. All of the health educators also thought that the simple graphics and pictures in the cu rriculum made it easier for the Spanishspeakers to understand. As just mentioned, 100% of health educators thought that the pictures and straightforward text made the curri culum easy for their Spanish-speaking patients to understand. They all thought that the simple pictures and little
79 amounts of text were the best part of t he curriculum. Other health educators had problems with a few of the translations but noted, nothing major that needed to be changed in the translation of the curri culum. One health educator noted that the term leche desnatada was not appropriate for skim milk and should be leche descremada . She and her patients were not sure what desnatada was but all agreed it was an inco rrect translation. Another health educator was not sure about the word encurtidos , and whether it meant that patients should not have anything in vinegar or if it m eant something else. Yet another health educator said that the word used for sweeping was incorrect (should be barrer ). Another pointed out that on one of the flip charts, the explanation on the back of one page is in English rather than in Spanish. Eighty percent (80%) of the health educ ators thought that the curriculum needed work but when probed for specifics, had difficulty thinking of any. They were asked later, via email and in pers on, if they had thought of specifics but they could not name any. These 80% ment ioned that they would like to see a separate curriculum for Mexicans from the rest of Latino groups from Central and South America as Mexican Spanish is quite different from that of other Spanishspeaking countries. Twenty percent (20%) of the health educ ators said that their patients had mentioned not identifying wit h the characters used in the curriculum. The curriculum cover features a divers e group of people, but throughout the curriculum the most commonly used char acters are a Black man and a White
80 woman. The Spanish-speak ing patients of these two health educators said they would have liked to seen more Latinos in the curriculum because it would be easier for them to identify with the topic. The other 80% of health educators also mentioned this as an issue for their Spanish-speaking patients. Research Question 2: What issues are important to the Spanish-speakers in relation to diabetes? 2a. What are the causal ideas a nd understanding about diabetes? Health educators were asked what their patient s said about how they got diabetes. Table 1 below summarizes what the heal th educators said about what their patients attributions for their diabetes Eighty percent (80%) of the health educators heard more than one explanation fo r how their patients got diabetes. Individual patients usually named more t han one cause of their diabetes. Twenty percent (20%) of health educators heard heredity as the only attribution of diabetes. Table 1: Causes of diabetes Health Educator Attributions given by patients in order of importance 1 Eat too much sugar Dont take care of themselves Stress Heredity 2 Not sure Heredity 3 Eat too much sugar Did something bad 4 Heredity Stress 5 Heredity 6 Heredity Continued on the next page
81 Table 10 (Continued) 7 Not suremention family but dont connect to genetics Pregnancy 8 Stress Accident (on the job or fell) Heredity 9 Heredity Horrifying experience or car accident 10 Eat too much Not exercising Heredity 2b. What symptoms associated with diabetes are discussed? Health educators were asked about the diabetic symptoms most described by their Spanish-speaking patients. In addition, symptoms were discussed in many of the classes and noted during class observations. Table 2 summarizes the symptoms described by the Spanish-speaki ng patients in class, and mentioned by health educators during the interviews All of the health educators (100%) said that the symptoms experienced by the Spanish-speakers are about the same as the English-speakers except for the mention of nervios and temblors Nervios is not necessarily meant to mean the folk illness nervios but simply as a symptom of diabetes. One health educat or (10%) said that the difference between the English-speakers and the S panish-speakers is that the Englishspeakers associate these symptoms with diabetes, whereas the Spanishspeakers do not. Table 2: Diabetic symptoms Symptom Number of times mentioned Percent Tired 7 23% Thirsty 6 19% Continued on next page
82 Table 2 (Continued) Nerves ( Nervios ) 4 13% Headaches 4 13% Tremors ( Temblors ) 3 10% Blurred vision 3 10% Pee a lot 3 10% Constant Hunger 2 6% Dizziness 2 6% Cold/Chills 1 3% n = 31 (21 class observations and 10 interviews) 2c. What foods and dietary issues are commonly mentioned and discussed? Eighty percent (80%) of the health educators named diet as the most important issue to the Spanish-speak ing patients when it comes to diabetes management. The other 20% named diabetic supplies (glucose monitors and testing strips) as the most important th ing to the Spanishspeakers, with diet being the second most important thing. Health educators said supplies are important to the Spanish-speakers because many of them are uninsured due to legal status and cannot afford the supplies. All of the health educators (100%) said that prior to their enrollment in the program their Spanish-speaking patients had trouble or simply could not diet properly to control their diabetes. This was also the case throughout the study, although 80% of health educators said that their Spanish-speakers were able to successfully make small changes to thei r diet. Twenty percent (20%) of the health educators said they referred t heir patients having a lot of trouble controlling their diet to a dietician at the clinic. Health educators were asked about the barriers to a healthy diet faced by their Spanish-speaking patient s. Table 3 summarizes the responses given by
83 health educators to diet barriers. So me health educators named more than one barrier. Table 3: Barriers to healthy diet Barrier Number of health educators indicating Percent Cultural issues 6 60% Cost of healthy food 4 40% No control/cant stop eating3 30% n = 10 Cultural issues were most notably traditional Latino foods and cooking styles such as frying that may not be healthy but are a staple of Latino diet; difficulty adjusting to daily eating patterns such as eating the largest meal in the evening as opposed to the afternoon; and a cculturation to American foods that are unhealthy such as fast foods. Forty percent (40%) of health educators said that their Spanish-speaking pat ients ate fast food quite o ften. Of those who said their patients ate fast food, 50% said that the younger patients were more likely to talk about eating fast f ood than the older patients. Health educators were asked about w hat they thought or knew about what their Spanish-speaking patients eat. In addition, notes were taken during class observations about what Spanish-speaking patients said about food. Table 4 is a summary of all the foods mentioned by the health educators and/or by the patients themselves during class.
84 Table 4: Foods commonly mentioned Food Times mentioned PercentFood Times mentioned Percent Tortillas 15 48% Fruits 2 6% Rice 14 45% Oil 2 6% Beans 14 45% Potato 2 6% Plantains 13 42% Refried Beans 2 6% Bread 7 23% Yucca 2 6% Fried Food 7 23% Arroz con Leche 1 3% Soda 6 19% Bacon 1 3% Butter 6 19% Canned Foods 1 3% Cheese 5 16% Canola Oil 1 3% Chicken 5 16% Eggs 1 3% Fish 5 16% Empenadas 1 3% Arepas 4 13% Fajitas 1 3% Meat 4 13% Flan 1 3% Coffee 4 13% Ground Beef 1 3% Bananas 3 10% Ham 1 3% Cereal 3 10% Lard 1 3% Corn 3 10% Olive Oil 1 3% Juice 3 10% Papaya 1 3% Licuado (milkshake) 3 10% Pasta 1 3% Salad 3 10% Yam 1 3% Soup 3 10% Yautia 1 3% Turkey 3 10% Soy Milk 1 3% Vegetables 3 10% Sugar Cereal 1 3% Avocado 2 6% Sweet Potato 1 3% Chicharonnes 2 6% Sweets 1 3% Chuletas 2 6% Tacos 1 3% Crackers 2 6% Watermelon 1 3% Dessert 2 6% n = 31 All of the health educators (100%) sa id that rice, beans, tortillas and plantains ( platanos ) were the most important foods for Latinos. Seventy percent (70%) of the health educators said that the way food is prepared is a big issue for
85 Latinos because they usually fr y everything. Tortillas are often fried in butter, oil or lard, and meats are fried as well. Eighty percent (80%) of the health educators said that their Spanishspeaking patients dont drink water. Eighty percent (8 0%) of health educators also said that their Spanish-speaking patient s do not or rarely dr ink milk. If they do drink milk, they drink whole milk. The reasons they give for not drinking milk are that skim milk tastes like water, t hey just dont like milk, and their stomachs are not accustomed to milk. Twenty percent (20%) of health educators said that their Spanish-speakers do buy and drink skim milk now. Sixty percent (60%) of health educators said that their Spanish-speaking patients talked about their stomachs not being accustomed to certain foods such as milk, and food practices such as eating a big meal in the ev ening rather than in the middle of the day. They also said that patients talked about being accustomed to certain foods such as sweets, coffee, tortillas and beans and could not change those eating habits. This was especially true for older patients. Eighty percent (80%) of health educat ors said that food label reading should be included in the diet section of the curriculumin both the English and Spanish versions of the curri culum. However, it was even more important for the Spanish version to include a label written in English with the Spanish translations next to it because many Spanish-speakers do not read English. Although not included in the curriculum, 40% of the health educators teach their patients how to read food labels.
86 2d. Is alcohol discussed? If so, what is said? Health educators were asked about their patients consumption of alcoholic beverages. In addition, observations were made during classes about discussion of alcohol by patients. Eighty percent (80%) of the health educat ors said that their Spanish-speaking patients did drink alcohol. Of these 80%, 25% said that they thought their patients lied in the baseline interview, claiming that they do not drink alcohol when, in fact, they do. Another 62.5% of those who said their patients drink alcohol said that it is the men who dr ink more often than women, and usually drink beer, while 12.5% of t hose who said their patients drink alcohol said that women drink mixed drinks. The other 20% of health educators said that they were sure that most of their patients did not drink alcoho l because the patients were adamant about not consuming alcoho l in the baseline interview conducted when the patient enrolled in the study. In addition, in 48% of class observati ons patients, asked about the effects of alcohol on blood sugar. In only a c ouple classes did patients discuss former alcohol abuse. 2e. Is ideal body image discussed? If so, what is said? One hundred percent (100%) of the health educators said that most of their Spanish-speaking patients are overweight. Within this 100% who said their patients are overweight, 30% of health educators said that their patients do not talk about body weight or body image. Twenty percent (20%) of health educators said that most of their patients should lose 30-40 pound s, but they see themselv es as thin. Another
87 20% said that their patients think they have to lose 5-10 pounds but really need to lose a lot more. Ten percent (10%) sa id that many of her patients do want to lose weight, except for a few who think that it is good to be fat. This health educator said that body fat is a sign of wealth, so its good to be overweight. One class observation noted that women discussed that it is better to be a little fat. 2f. What is said about exerci se and barriers to exercise? One Hundred percent (100%) of health educators said t hat almost all of their patients gave excuses as to why they could not exerci se. See Table 5 below for a summary of excuses patients gave to the health educat ors for not being able to exercise. Table 5: Exercise excuses Excuse Number of health educators noting Percent Pain 5 50% Work too hard 4 40% Dont have money for gym3 40% Nowhere to exercise 2 20% No one to go with 2 20% n = 10 In addition, health educators had thei r own opinions about the exercise habits of their Spanish-speaking patients. Only 10% of health educators thought that exercise was one of the most important issues to Spanish-speaking patients. Ten percent (10%) of health educators sa id that their Spanish-speaking patients were lazy and did not do any exercise, and 10% said that most of his Spanishspeakers really dont have any excuses wh en it comes to exercise because they do not work. However, anot her 60% thought that their patients did attempt some exercise. Ten percent ( 10%) of health educators said that their Spanish-
88 speakers just dont know about exercise, and 30% said that their Spanishspeakers think they have to go to the gy m to exercise. T hey added that the Spanish-speakers dont rea lize that brisk walking in their neighborhoods is good exercise as well. 2g. Are folk illnesses discussed in relation to diabetes? Health educators were asked if their Spanish-speaking patients ever mentioned any folk illness in connection with diabetes. Surprisingly, 40% of the health educators had never heard the term folk illness and did not know what susto was and did not consider nervios as a folk illness but as more of a symptom. Thirty percent (30%) said that they heard about susto often, or mention of a frightening or horrifying experience and accidents in c onnection with the onset of diabetes. Twenty percent (20%) of health educators did not hear about folk illnesses but were surprised they had not. Ten percent (10%) of health educators had heard about susto and nervios with other diabetes educ ation programs they had worked on but did not hear it working with this program. See Table 6 below for a summary of responses. Table 6: Folk illnesses Health educator response Number Percent Never heard of folk illnesses 4 40% Heard about folk illnesses a lot from patients 3 30% Surprised did not hear about folk illnesses from patients 2 20% Did not hear about folk illnesses with this diabetes program but with others 1 10% n = 10
89 2h. Are home or folk remedies discussed? Health educators were asked if their Spanish-speaking patients used any hom e, folk or herbal remedies for the treatment of diabetes. Seventy perc ent (70%) of health educators heard a variety of home remedies used by their patients to treat diabetes. The remaining 30% had not heard of any home remedies used by their patients. See Table 7 below for a list of home remedies used by patients. Table 7: Home or herbal remedies Remedy NumberPercent Herbal Tea (not sure what kind) 3 30% Chayote and cucumber blended1 10% Cactus 1 10% Root from Brazil (plant) 1 10% Rice Bran 1 10% n = 10 Research Question 3: What are the o verall experiences with the program of the health educators and the patients? Health educators were asked about their overall experience with the Spanish-speaking patients in during the program. Se venty percent (70%) of health educators said that their over all experience with the Spanish-speakers was positive. The other 30% of heal th educators said that their Spanishspeaking patients were less compliant than their English-speaking patients, noting that the Spanish-speakers drop out of the program earlier and more often than the English-speakers, and that once the Spanish-speakers get the supplies (blood glucose monitors and testing strips ) they dont come back. Ten percent (10%) of health educators said that none of his Spanish-speakers finished the program but had no idea why this was t he case, and another 10% said that only
90 10% of her Spanish-speak ers finished the program, while others gave about a 50% program completion rate for Spanish-speakers (about average for the entire program.) Another 10% t hought that many of the Spanish-speakers might not finish the program because they are migrant workers and leave the area. 3a. What issues are involved in the Spanish-speaking classes? Eighty percent (80%) of health educators thought that the Spanishspeakers had good class attendance, and o ften better than their Englishspeaking patients. The other 20% of health educators thought that the Spanishspeakers showed worse attendance than the English-speaking study patients. These two health educators noted that the Spanish-speak ers either never showed up or never finished al l of the classes. They did not know why this was the case. Eighty percent (80%) of the health educators said that the Spanishspeaking study patients really get involv ed in the classes, asking a lot of questions and sharing their experiences with diabetes. Ten percent (10%) of health educators said that the Spani sh-speakers only get involved and open-up in a small group setting. This health educat or said that in bigger classes the Spanish-speakers were quiet and s ubdued. Ten percent (10%) of health educators thought that her Spanish-speaking classes were much quieter and less involved than her English-speaking cl asses. She thought this might be out of respeto but she was not sure why this was the case. Eighty-one percent (81%) of class observations demonstrated a lot of involvement by the Spanish-
91 speakers. The classes that were quieter were those where the patient was oneon-one with the health educator. Seventy percent (70%) of health educators did not think that respeto was an issue in the classes. They thought t hat their Spanish-speak ing patients were not intimidated or did not ask questions out of respect for their status as a teacher. These seven health educators t hought it was their accessibility to and familiarity with their patients that a llowed the patients to see them as knowledgeable equals. Thirty percent (30% ) of health educators thought that their patients would sometimes be quiet or not ask questions in classes or privately because of respeto They could not be sure of this but could not think of any other explanation. Ninety percent (90%) of health educat ors said that Spanish-speakers were more likely to bring family members or friends to class. However, on the patient satisfaction survey, only 25% of the patients said t hat they brought a family member to class. This was not much different from the English-speaking patients, of which 19% reported bring fam ily members. Out of the 90% of health educators who said that Spanish-speakers were more likely to bring family members, 77% said that t hose who do bring family members would usually bring the person who does the cooking in the household. In addition, 77% of those who said Spanish-speakers were more likel y to bring family members or friends to class also said that men will bri ng their wives and women will bring their daughters. Twenty-two percent (22%) said that wives will bring their husbands,
92 and 11% said that wives never bring their husbands. All of the health educators reported that sons and brother s never came to class. Ten percent (10%) of the health educators said that more of her English-speaking patients brought family members to class. She thought this wa s strange and had expected the opposite. 3b. What is the overall opinion of the program materials? On the patient satisfaction survey, patients were ask ed what program materials they liked and used the most. The one item that the Spani sh-speakers said they liked and used the most (62.5%) was t he Passport to Health ( Passaporte a Salud .) This is like a real passport with the patient s photo inside, where they can record medications, doctors appointments and their blood sugar numbers twice a day. The second favorite item mentioned by 53% of patient s was the pillbox. The materials they liked or used the least were the magnet s (18.5% did not use) and the calendar (20% did not use.) The other respons es were spread out among the other materials. 3c. What logistical issues are invol ved for patients coming to classes or meetings with the health educator? Patients in the study were asked on the patient satisfaction survey how they came to class. Table 8 is a summa ry of the answers given by patients on how they got to the clinic during class times. Table 8: Transportation to clinic Method of transportationNumber of patients indicating Percent Drove 18 58% Someone drove me 7 23% Walked 6 19% Rode the bus 1 3% n = 31
93 Health educators were also asked about transportation issues with their patients. Sixty percent (60%) of health educators said that transportation was a major barrier to getting their patients to come for appointments and classes. Of that 60%, 16.5% thought that their patient s just used lack of transportation as an excuse not to come because public trans portation in the area was very good. Another 30% of health educator s said that their patients were often late to class because of the bus or wait ing for someone to take them to the clinic. Health educators mentioned the same modes of transportation as the patients but added more specif ics. One health educator said that her patients would hitch a ride or pay someone to take them to the clinic, and another health educator said that a large extended fa mily usually shares one vehicle so scheduling can be difficult. Forty percent (40%) of health educators said that their clinic provided transportation but of those, only 25% said that her patients used the service. This health educator sa id that she set up transportation for about 75% of her patients. The other 75% who said their clinic provided transportation said that their patients di d not use the service. One said the transportation was mainly for pregnant wo men, one said only Americans use it (she did not know why), and one did not know why they did not use it. Health educators were asked about the occupations of their Spanishspeaking patients. Table 9 is a summary of the occupations held by Spanishspeaking patients.
94 Table 9: Occupations Occupation Number of health educators indicating they had patients in occupation Percent Field worker 8 80% Home maker 8 80% Maid 5 50% Retired 4 40% Construction 2 20% Other service industry 2 20% n = 10 Eighty percent (80%) of the health educators said that their Spanishspeaking patients missed classes or could not come because of their long work schedules. These health educators noted that it might be more important to go to work than to come to the clinic and t heir patients could not a fford to take time off from work. This was especially tr ue for men who were more likely to be working out of the home. The other 20% said that many of their Spanishspeaking patients do not work so that there was no r eason they could not come to the clinic for classes. Research Question 4: What other i ssues and core cultural values are involved in participating in this pr ogram and navigating the health care system in general? Although health educators were not specifically asked about the immigration status of their Spanish-speak ing patients, the s ubject came up in casual conversations with the health educat ors during regular site visits. See Table 10 for a summary of health educat or comments about the immigration status of their Spani sh-speaking patients.
95 Table 10: Immigration status Health educator comments Number Percent Illegal but dont talk about it 4 40% Illegal 2 20% None are illegal (if they are they dont talk about it)2 20% Legal status never comes up 1 10% Illegal and a lot of talk about it 1 10% n = 10 While 20% of the health educators said that they thought illegal status kept Latino patients from t he program, the other 80% di d not think this was an issue because the clinics were set up to cater to immigrants. Twenty percent (20%) of health educ ators said that their Spanishspeaking patients mentioned not wanti ng to burden their families with their disease and that there is not much family involvem ent. These health educators also noted that their diabetic Spanishspeaking patients kept their disease completely separate from the family. These patients told the health educators that they cooked things differently for them selves than they did for the rest of the family. One of these health educators al so stated that even in large extended families where the diabetic could get a lot of help, the family was not involved. Eighty percent (80%) of health educ ators said that there are gender differences in family involvement in disease management. The health educators noted that if it was the woman of the household who had diabetes, no one really cared. The women did not burden their fa milies with their disease; they cooked separately for themselves, and cooked the fa mily the foods to which they were accustomed. If the man of the household had diabetes he was catered to and taken care of by the females in the household whether it was the wife or
96 daughters. Twenty percent (20%) of health educators said that they did not really notice any gender differences in family involvement in disease management. One Hundred percent (100%) of the health educators sa id that they try to get the whole family involved in di sease management because family members are also at risk for getting diabetes if one family member already has the disease. Sixty percent (60%) of health educators sa id that their patients said they were trying to get the rest of the family invo lved in changing their diets but were not always successful as seen above. Forty percent (40%) of health educators said that they knew for sure t hat their patients were not tr ying to change the diet for the rest of the family, nor tryi ng to get the family involved. When asked if their Spanish-speaking patients expressed fatalistic views in relation to their diabetes, 70% of the health educators said yes, noting that there is a lack of acceptability of the di sease, and that their patients think that there is nothing they can do about diabetes until they start coming to class and learning how to manage the disease. The other 30% of health educators did not think their patients were fatalistic, but had positive outlooks on life and their diabetes. However, 80% of health educators said that their patients are in denial about the severity and consequences of diabetes. Ninety percent (90%) of the health educ ators thought or knew that their Spanish-speaking patients we re depressed. Only 10% said that they did not think their patients were depressed. Pa tients gave many reasons for depression.
97 Those health educators who suspected t hat their patients were depressed but did not receive confirmation (30%) said this was so because depression or talking about depression is considered a weakness. See Table 11 below for a list of reasons for depression. Table 11: Reasons for depression Reason for Depression Number of Health Educators citing Percent Sexual side effects (erectile dysfunction) 2 20% No control (over diabetes) 2 20% Cant eat what they want 1 10% Other factors (bad ho me life, no job, no money) plus diabetes 1 10% Depressed but dont want to talk about it 3 30% n = 10 In conclusion, this chapter has presented the results from the data collected from interviews with the health educators, class observations, and the patient satisfaction survey. The result s were presented in the context of the research questions presented in Chapter Three. Chapter Five provides an analysis and discussion of the results in the context of the lit erature presented in Chapter Two.
98 Chapter Five Analysis and Discussion This chapter analyzes and discusses t he results from Chapter Four. Again, the analysis and discussion are framed within the research questions presented in Chapter Three, and in the cont ext of the literature review presented in Chapter Two. There are several impor tant findings from the results that are discussed here. The most important issue is the diet section of the curriculum, which should include more culturally appropriate foods and include food label reading. Other important issues for which recommendations are made in the next chapter include gender differences in family involvement in disease management; explanatory models of diabetes including folk illnesses; use of home remedies; alcohol consumption, er ectile dysfunction and depression; body image and concepts of exercise; lack of pictor ial representations of Latinos in the curriculum; and development of separate curriculums for Mexicans and other Latinos. Research Question 1: Is the language and presentation of the Spanish curriculum appropriate? As found by previous research (D reger and Tremback 2002; Flores 2000), illiteracy among the Spanish-speakers is a major issue that needs consideration in any health education program for Latinos. All of the health educators said that
99 illiteracy was an issue with mo st of their Spanish-speaki ng patients. One health educator said, The women [who were just in class] are illiterate and only had a couple of years of schooling. They were intimidated to take a class at first but I talked them into it and they are doing very well. Another said, [The Spanishspeakers] were scared of t he quiz at the end of class. They may not have had much schooling and were afraid of not doing the right thing. Other health educators said that they had to repeat a lot of things for their Spanish-speaking patient s before they understood the concepts noting, [The Spanish-speakers] have very low education le vels. I have to repeat things a lot for them; another telling me, I had to repeat a lot of things for the Spanishspeakers. The English-speakers were more knowledgeable and had higher education levels. This shows the importance of having a program, such as Pfizers, that keeps teaching at a lo w literacy level for easy understanding. Others working with Latino populations and health education have noted the importance of language, suggesti ng that Mexicans have a separate curriculum from other Latino groups (Hall 19 87; Brown and Hanis 1999). Most of the health educators indicated that the translations in the curriculum were pretty good except for a few errors. Most also said that Mexicans use words that are much different than other Latino gr oups. Ideally, there would be a separate curriculum for each ethnic group but this is not always possible given time and money constraints.
100 The Pfizer curriculum successfully follows what others in this field have said is one of the most important in designing a health education program: using a low literacy level with easy to under stand pictures (Hall 1987); Brown and Hanis 1999). While illiter acy is an issue, the Pfiz er program presents the curriculum and workbook in an easy to understand manner with very few words and easy to understand pictures. All of the health educato rs thought this was the best thing about the curriculum, and that very few changes should be made in terms of language and presentation. One health educator noted, The best part of the program is the pictures It makes everything ea sy to understand, especially for those who cannot read. And another said, I like the pictures a lot in the curriculum because illiterate people st ill know what it is "saying. Others have noted the import ance of being able to identify with others who have the disease, and suggest using pict orials of people from the target population's ethnicity and/or culture (Hall 1987; Brown and Hanis 1999). Although only 20% of the heal th educators mentioned it, the characters in the pictures in the curriculum may not be as culturally sensitive as they could be since they feature a white woman and a black man and few representations of Latinos. Research Question 2: What issues ar e important to the Spanish-speakers in relation to diabetes? 2a. What are the causal ideas a nd understanding about diabetes? The literature suggests that Latinos most often name heredity as the cause of diabetes but cannot alone explain disease onset (Hunt et al. 1998; Weller et al.
101 1999). Often other explanatory models are giv en in addition to heredity. In their study, Weller et al. (1999) found that G uatemalans were likely to name stress and emotions as a cause for diabetes and that Mexicans were likely to name susto as a cause ( susto is discussed further in section 2g below.) As the literature proposes, in this study heredity was named by participants as the main cause of diabetes but could not alone always explain how patients got the disease. Participants usually told health educators several causes for why they had diabetes with heredity being the central one. However, it is clear from the literature and this internship that other attributions must be recognized and are still part of many Latinos' ex planatory models of diabetes. For example, three of the health e ducators said their patients thought eating too much sugar was the cause of their diabetes, another three said their patients thought stress was the cause, and tw o said that their patients thought an accident or horrifying experi ence caused their diabetes. In connection to stress, one health educator explained, Some say they got it because of the way they came to the U.S. being stressful. All my patients say things like this, not just the Mexicans. 2b. What symptoms associated with diabetes are discussed? The literature has shown that diabetic sym ptoms named by Latinos ar e consistent with the biomedical model (Weller et al. 1999). As mentioned before, the Spanishspeaking patients named the same sym ptoms as the E nglish-speaking patients. The only notable diffe rence was the fr equent naming of nervios as a
102 symptom. However, this seemed to be mentioned more as a symptom than as a folk illness. 2c. What foods and dietary issues are commonly mentioned and discussed? Others have noted the importanc e of health education programs that emphasize culturally appropriate foods for Latinos (Brown and Hanis 1999; Hall 1987). Latino diet is far different fr om the traditional American diet as seen both from this internship and others who have written on the topic (Baer and Nichols 1998). By far, the most important and discussed issue for the Latinos in this internship was diet and food choices. The health educators talked about this often and said it was the most important i ssue for their patients. The focus most often mentioned during this internship were rice, beans, tortillas and plantains. Other traditional foods t hat were mentioned were arepas, chicharonnes, chuletas and empenadas It is likely that other traditional foods, as those described by Baer and Nichols (1998), were also discussed when I was not present as an observer. The health educators emphasized that curriculum should include more traditional Latino foods. Ric e and beans are pictured in the curriculum but this is not enough. Following are some of the th ings the health educators said about the diet section of the curriculum: One health educator from Puerto Rico noted The most important issue to the Span ish-speakers is the food part of the curriculum, especially the cultural foods. I would really like to see those included in the curriculum. There are many differ ent kinds of Spanish foods. Americans
103 are so stereotypical about this, whenever they meet a Spanish-speaking person they say things like, "Oh, you must love such and such Mexican restaurant!" as if we are all Mexican and eat Mexican food. Another told me, Diet is the most important issue to the Spanish-speakers. T hey all eat different. It is difficult to design a menu to help them. In t he [curriculum] they tell you about carbohydrates and proteins but I have to go find specific diets for them, otherwise they do not understand these things. And yet another health educator similarly said, Diet is the biggest issue for the Spanish-speaking participants. The curriculum describes more starch y foods than they are used to. One of the more important issues for Latinos is that they do not understand what carbohydrates are. The term for "carbohydrates, carbohidratos is not commonly used in Spanis h; many did not understand what the health educator was talking about so they had to be taught the difference between carbohydrates and proteins. If the word is not commonly used in a language or culture, it s hould not be taught to that group because they most likely will not grasp the concept. Other cultural issues in associati on with diet were discussed by the health educators during interviews. Several of the health educators argued for a more culturally appropriate diet sectio n in the curriculum with one noting, You can't really culturally change these people, t hey've been cooking like this for 40 years. You can only make suggestions on how to improve. Another health educator argued, The biggest barrier to changing diet is the influence from culture. It is
104 very difficult to change a cultural di et. They have been eating these things forever and they are not going to stop now. It is part of their culture. One Mexican man in a class exemplif ied the importance of acknowledging and discussing a culturally appropriate diet with the Latino patients when he said, My stomach is accustomed to eating certain foods and I cannot switch now. If there are no beans in my food, then it is not food. I will not eat it. The health educators argued for what ot hers in the literature have also suggested: culturally appropr iate and meaningful diets that Latinos can adopt into their traditional diet (Hall 1987; Baer and Nichols 1998; Brown and Hanis 1999). For example, frying is the main way of preparing many foods in the Latino culture. Therefore, it might not be realistic to te ll them to stop frying completely but, rather, to change oils and fry less o ften. Some health educators also remarked that the curriculum should s uggest brown rice as opposed to white rice, which does not have any nutritional value, and advocate corn tortillas over flour tortillas. However, there were a couple health educators who thought the curriculum was better being more general, and that it is th e health educators responsibility to provide additional teachi ng on more culturally appropriate foods. The argument here was that the Latino population is so diverse, with so many different foods, that one cu rriculum could not apply to everyone, so the health educator must teach specifically to the ethnicity of person or people being taught.
105 Besides emphasizing rice, beans, tortillas and plantains in the curriculum, health educators also argued for a food labe l reading section in the curriculum. This is important for both English-s peaking and Spanish-speaking patients, but even more so for Spanish-speaking because many of them c annot read English, the language in which most of the food labels are written. Since most food labels contain the same basic information, the Spanish-speakers could be taught the few items that are on the labels to help them understand w hat amounts should be taken in daily. 2d. Is alcohol discussed? If so, what is said? The literature has suggested that Latino men may have bigger problem s with alcohol abuse than other ethnic groups (Caetano 2003). Alcohol was an iss ue for many of the Spanish-speakers. Alcohol was discussed in almost 50% of the classes. Furt hermore, 80% of the health educators said that their Spanish -speaking patients dr ank alcohol and that it was usually the men who drink and that they drink beer. The health educators also felt that their patients lied about alcohol consumption, saying that many drank even though they denied it in the bas eline interviews. One health educator said of her Spanis h-speaking patients, I think some of them drink alcohol but they lie in the interview. They will say t hey had one beer a few weeks ago but I dont believe them. Some come to their appointments hungover. Another health educator told me, Alcohol comes up but they will cons istently lie to me about how much they drink. Their blood sugars show it though. I know they drink but they
106 will not tell me. I think it should be par t of the curriculum because its very important and a lot of them are drinking. 2e. Is ideal body image discu ssed? if so, what is said? As suggested by Massara (1989) and Cassidy (1991), Latinos, especially Latina women, may think that being a bit overweight is mo re beautiful than being skinny, as many Americans believe. All of the health educ ators noted that most of their Spanishspeaking patients were overweight. Only 10% said that their patients want to lose weight. Other patients said that they wanted to lose a little weight, but educators believed they could stand to lose a lot more. During one class observation a woman said the following, When someone is thin you look at them and think, What is wrong? and When is this person going to die? But when you are fat people say, Q ue lindo! [How beautiful!] Although ideal body image may not be discussed very often, comments like the one above, and others from health educators, demonstrat e that the ideal body image for Latinos may be somewhat different than ot her Americans, and this should be addressed in the curri culum and by the health educators. 2f. What is said about exerci se and barriers to exercise? Some research (Anderson et al. 1998; Brown and Hanis 199 9; Flores 2000) has argued that the family comes first and exercise can be c onsidered a selfish act that takes away from family obligations. The health educ ators noted that their Spanish-speaking patients who exercise us ually go walking, while some prefer dancing, a customary activity in most Latino cultures.
107 Since all of the health educators said that most of thei r Spanish-speaking patients gave excuses as to why they coul d not exercise, it may be important to emphasize the importance of ex ercise in curriculum. Ma ny thought that the work they did either in the fields or at home was already exercise enough. One health educator said of his S panish-speaking patients and exercise, Some say they like to walk but have no time. Some think they have to go the gym for exercise. Males dont think they have to exercise because they work so hard. I tell them that exerci se benefits relaxation. I te ll them to exercise for fun and it will release some natural healers and help them get better. In addition, farm workers work long, hard hours, leaving little time for the additional exercise necessa ry to control diabetes. Spanish-speaking patients also thought exercise m eant joining a gym and spending money that could be better spent providing for the family. 2g. Are folk illnesses discussed in relation to diabetes? As Poss and Jezewski (2002) recently found in their study of the relation between susto and type 2 diabetes, there is still a strong c onnection between the two diseases for Mexican-Americans living in El Paso, Te xas and Weller et al. (2002) also found a high prevalence of susto in four different Latino populations. In this internship, surprisingly, many of the health educator s had not ever heard of folk illnesses or susto This was unexpected because all of t he health educators are also Latino. However, other health educators said that they heard susto mentioned quite often by their patients
108 The health educators in this internship who had heard of folk illnesses said that Mexicans were most likely to talk about susto or a frightening experience in connection with diabetes. One health educator from Honduras said, In relation to susto or folk illness I hear people telling me they are panicking. One lady said she had a horrifying experience when she was a child and she knew she was going to get it. Yes, I hav e heard that a lot, especially from the Mexicans. One man blames a car accident for the diabetes. I do hear that a lot. They think it's related to trauma. Another from Puerto Rico told me, I hear about susto a lot, especially from the Mexicans. They also talk about a lot about nervios. During one clinic visit, a nurse related a story about one of her husband's relatives who is Mexican. The following is taken from field notes during the site visit: [The relative] said, "it finally happen ed." [referring to getting diabetes] When the relative was young he had a big scare and that's why he finally got diabetes. It's going to happen no matter w hat. The nurse was angry that her husband agreed with his relative's story. They don't want to listen. It's called susto. You can't tell them anything bec ause it's going to happen no matter what. Other health educators who had not heard of folk illnesses had other comments. One from Puerto Rico said, I didn't hear anything about folk illnesses or susto. I have never heard that term before or anything like it. It is possible health educators did not hear more about fo lk illnesses because they themselves did not know what they were and/or bec ause they were not looking to discuss such issues based on the curriculum. This also suggests that folk illnesses may
109 be subsiding in acculturated Latinos and ma y not be as big an issue as they have been in the past. It may also suggest that people are not comf ortable mentioning things like folk illnesses to health educat ors because they know it does not mesh with the biomedical model, or they may not trust the health educator enough to mention folk illness. 2h. Are home or folk remedies discussed? As other research has found (Trotter 1981; Winkelman 1989; Zaldivar and Smolowitz 1994), home remedies are used by Latinos in the tr eatment of diabetes. In th is study, 70% of the health educators had heard of their patients using some sort of home remedy. While most of the Spanish-speaking patients were also on prescribed medications, use of home remedies was also commonly used Although it is likely the case that Latinos in this study believe that type 2 diabetes is best treated by a doctor as others have found (Weller et al. 1999), hom e remedies are still sometimes used, and health educators should be aware of th is since dangerous interactions can occur between prescribed medications and home remedies (Winkelman 1989; Pachter 1994). Research Question 3: What are the o verall experiences with the program of the health educators and the patients? In general, both the health educator s and the Spanish-speaking patients had a very positive experience with the pr ogram. The patients were particularly happy to have education from Latino health educators, and to receive free testing supplies and grocery stor e gift certificates. O ne health educator noted, I have enjoyed the program and I think they hav e too. Most have completed the
110 program because of the free supplies. They are very friendly and willing to participate. Another said, They are just happy that t here is someone who speaks their language teaching the classes. A nd someone who can break it down for them. I make it applicable for their culture. And yet another had this to say, They just really want the program to stay. They want to know if anything more will come. I would have at least 500 patients if I had gotten all that were referred to me. Only a couple of health educators said that their experiences with the Spanish-speakers were not positive. T hese health educators said that their patients were non-compliant and either did not show up for class or never finished the program. One health educator said, The Spanish-speaking participants are not necessarily as compliant as the English-speaking. Once they get the free stuff they never come back. One had a sugar of 390. They are very non-compliant. One lady comp lained that she could not a fford her test strips but then had enough money to go to Mexico for two months! 3a. What issues are involved in the Spanish-speaking classes? Although the literature suggests that Latinos may be quiet out of respect for professionals (Marin and Marin 1991), respeto did not seem to be a reason for quietness here. Class attendance and involvement by the Spanish-speakers was good according to the health educators and class observa tion notes. Only a few of health educators thought the Span ish-speakers were more subdued in class. Respeto
111 may not have played a role because t he health educators are also Latinos and tried to act more like friends t han authorities with their patients. The value of collectivism (Marin and Marin 1991) could also have played a role in the fact that most of the health educators noted that their patients were very involved in classes and friendly with each other. One health educator said, There is a big difference between the English-speaking and the Spanishspeaking classes. In the Spanish-s peaking they are more friendly with each other. One man brought co ffee for everyone in class. There is much more comradery. The Spanish-speakers respond to this and they like talking about their disease with each other. Its like a small family in class. The Englishspeakers are not like that. Family in Class Literature suggests (Flores 2000) that the family would be more involved in disease management as compared to non-Lat ino white families. In this study, the data on family attendance in class ar e unclear. While 90% of the health educators said that Spanish-speaking pat ients were more likely than Englishspeakers to bring family members to cla ss, only 25% of the patients themselves said that they did, while 19% of the English-speaking patient s said that they brought family members. These data do not seem to support t he literature that argues that Latino families are much mo re involved than non-Latino Whites (also see section under research question 4 below.)
112 3b. What is the overall opinion of the program materials? The Spanishspeaking patients found the Passport to He alth the most useful and enjoyable program material. This could be for several reasons, including having an easy place to write down blood sugar numbers, medications and doctors appointments. For patient s who are not legal citizens, or have never had a passport, it could give them a sense of pride to have a document that resembles a real passport, even including their photo on the inside cover, something that they may never obtain. 3c. What logistical issues are invol ved for patients coming to classes or meetings with the health educator? Transportation Although previous research (Ches la et al. 2000; DArrigo and Keegan 2000) has suggested that one major barrier to health care for Latinos is transportation, that was only partly true here. Most of the patients said that they drove themselves to the clinic fo r classes and scheduled appointments. However, the health educators did see tr ansportation as a problem for many of their patients, although one just thought they used that as an excuse not to come to classes saying, Many of them do mention transpor tation as a barrier to coming to classes and appointments but I think that is just an excuse sometimes because there is a decent pub lic transportation system here. It could also be the case that while patients said they drove themselves, there could be one car for an extended family, making it difficult to schedule time
113 for use of the car. On e health educator said, There are problems all the time with transportation. One member of the family will have a car, usually a member of the extended family. If we had a good pub lic transportation system they would use it. Health educators should ask their pat ients how they get to class, if transportation will ever be a problem for th em, and offer alternatives. Some of the clinics have transportation but the patients may not be aw are that it exists, or as one health educator noted, There is also a transportation problem, a big problem. They get a ride from a friend or a co-worker. The clinic has transportation but there is priority for pregnant women. Occupations As others have noted (Chesla et al. 2000; DArrigo and Keegan 2000), occupations such as migrant farm wo rkers, home makers, and maids can keep Latinos so busy that they cannot find ti me or energy to participate in a health education program. As ment ioned earlier in relation to exercise, long hours and strenuous work can prevent people from bei ng able to get the medical care they need, the health education they need the pr oper diet and exercise routines. Working to support the family is the most important thing; spending the time to concentrate on health and health care can get in the way.
114 Research Question 4: What other i ssues and core cultural values are involved in participating in this pr ogram and navigating the health care system in general? Familismo As suggested above, family is a big fa ctor in all parts of Latino culture (Anderson et al. 1998; Brown and Hanis 199 9; Flores 2000). Importance placed on the family could keep Latinos from spending the time, money and energy necessary to come to the clinic and health education classes. Taking care of oneself is considered selfish and not l ending to the support of the family. Therefore, it is important that t he family become involved in disease management of the type 2 diabetic, and that the whole family make changes since they are also at risk for getting the disease. There are evident gender differences in disease management that need to be taken into consideration when t eaching a health education program for Latinos. Here it was found that if the wo man is the diabetic, she received little or no support from the family w hereas, if the man is diabetic, he received a lot of support from the family, was often tak en care of and had his needs catered to. Health educators had the following things to say about the gender differences in disease management: If its a woman who has diabetes there is not much attention paid to her. The family is not involved in disease management if it is the woman who has it. Another health educator observed, If it is a woman who has diabetes she does everything for herself. She might ask for help when she is testing [her blood sugar] but she does ever ything else on her own. If a man has
115 diabetes he gets a lot more help from the family. Another said, It is easier for men to change eating habits. Women are very sensitive about their husbands. They obey and they want to help the men get better and live longer. The men dont care about the women when they are the ones with diabetes. Respeto Respeto or respect, does not seem to be a huge issue in this study as other research as suggested (Marin and Ma rin 1991; Flores 2000). A couple of the health educators thought that it mi ght be a reason why some of their Spanish-speaking pati ents are so quiet, but others di d not think this was an issue because they are also Latinos and try to deal with their patients on a very relaxed and personal level. In additi on, the health educators said that their patients felt comfortable and safe at the clinics. Mo st of the clinics employ many Latinos and/or Spanish-speakers, making it easier for the Spanish-speaking populations to navigate the clinic system. The other core cultural values of collectivism and simpatica could also play a role in the implementation of t he health education progr am. Some of the health educators noted that their S panish-speaking classes became more cohesive and friendly than their English-spea king. However, others thought that the Spanish-speakers do better in smaller groups because they are more private and like to keep sensitive topics to themselv es. In either situation, the health educator should be aware of the patient s preferences and try to establish friendly and relaxed interactions. This did not seem to be a major issue here as
116 the health educators are also Latinos and the patients may have felt more comfortable immediately. Fatalismo As literature that suggests Latinos are extremely fatalistic (Flores 2000; Goldsmith 1993), many of t he health educators also cited this as the case with their Spanish-speaking patients. Health educators also noted that their Spanishspeaking patients were in denial about hav ing the disease and the severity of potential complications. One health educator said, There is a lack of acceptability that they have diabetes. They dont ta lk about it and they dont want to talk about it. Its like an ostrich with its head in the sand. They just think, Everything is going to be okay and there is nothing that can really be done. Some health educators commented that their patients did not think there was anything they could do about the disease until they started coming to classes and saw that they could control their diabetes. Depression Some research has demonstrated that Latinos are more likely to be depressed than Black or Whit e Americans. In addition, literature has shown that Latinos are reluctant to seek out m ental health care because it would be disgraceful and selfish to do so (Henderson et al. 1993). Depression was a major issue for many of the Spanish-speak ing patients. Some health educators said that they k new their patients were depressed but that they would not discuss it because depression is considered a vulnerability in
117 Latino culture. One heal th educator remarked, A very small percentage mention depression in connection with diabet es. They are embarrassed because depression is considered a weakness. T hey can treat their bodies but not their minds. It is shameful to have depression. Conclusion In conclusion, this chapter has presented an analysis and discussion of the results that were pres ented in Chapter Four. This analysis was framed within the research questions first presented in Chapter Three, and in the context of the literature review in Chapt er Two. Chapter Six provides conclusions and recommendations from this internship and for the Para Su Salud health education program, and this internships relevance for Applied Anthropology and Public Health.
118 Chapter Six Recommendations and Conclusions This chapter presents conclusions and recommendations from my internship experience, the dual degree program, and most importantly, for Pfizers Para Su Salud ( For Your Health ) type 2 diabetes health education program for Spanish-speakers. Re commendations are based on class observations, patient satisfaction surv eys, but mostly on the opinions and experiences of the bilingual he alth educators who taught the Para Su Salud program and were intimately involved with the Latino patients who participated in the program. This chapter contains nine prim ary recommendations, in order of importance (most to least), for the Para Su Salud program. First, change the diet section of the curriculum to include more culturally appropriate diet concepts, foods, and cooking suggestions. Second, emphasize family involvement in disease management, especially for female pa tients. Third, include food label reading in English in the curriculum wit h appropriate Spanish translations. Fourth, acknowledge explanatory models of illness that may be different from that of American culture, including Gods will and folk illnesses such as susto and nervios Fifth, include discussion of folk or home remedies and their potential interactions with prescribed medications Sixth, include sections on alcohol,
119 depression and erectile dysfunction as these were commonly asked about topics and named as important issues by the heal th educators. Seventh, discuss ideal body image and exercise in ways that are sensitive to Latino beliefs and practices. Eighth, include more drawings and representations of Latinos in the curriculum. Finally, ninth, develop separ ate curriculums for Mexican patients and other Latin American patients. These recommendations are discussed in more detail below. In addition to the nine primary recomm endations listed above, this chapter also provides several secondary recommendations. These recommendations are deemed of less importance than the ni ne primary recommendations but still deserve consideration for this and other health education programs for Latinos. Recommendations for the Para Su Salud Program The purpose of this internship was to evaluate the Spanish version of Pfizers For Your Health ( Para Su Salud ) type 2 diabetes education program for Spanish-speakers on Medicaid or unins ured in community health clinics throughout the state of Florida. The end re sult is a set of recommendations that can be made to Pfizer, Inc. for ways to improve the program, which according to preliminary data from health educator interviews and pati ent satisfaction surveys, has already been very well received. I hope that these recommendations will help make the Para Su Salud Program more culturally relevant and sensitive for Latinos.
120 It should first be noted, that for the most part, both the health educators and the study patients truly enjoy the Para Su Salud program. Almost all comments were positive except for a fe w recommendations on ways to make the program better. Most of the recommendations come from the health educators themselves who, like their patients, ar e also part of the Latino community. Therefore, despite differences in countri es of origin from each other and their patients, the health educators most lik ely have a better understanding of their Latino patients needs than I do as an out side observer, or a non-Latino health educator. Since one of the lim itations of this study was that the patients were not directly interviewed about their opinions, the health educators provided the next best source of information since they we re from the same community as their patients, and are one of the bigges t strengths of the program. Another strength of the program is the low literacy level of the curriculum. The fact that the curriculum uses very few words and easy to understand pictures makes it accessible to everyone, whether they can read English, Spanish, or neither. In the future, to ensure Spanish translation consistency and accuracy, members of the Latino community and S panish-speaking professionals should review and revise the Spanish curriculum. Furthermore, the patients expressed both to the health educators and through the patient satisfaction survey, that they enjoyed the program. Whether positive changes were made in disease beliefs, attitudes and management will be determined later when the FHLS is complete and the data are analyzed.
121 Below are the specific recommendations that will be made to Pfizer, Inc. to improve the Para Su Salud type 2 diabetes education program for Spanishspeakers. Recommendation 1: Change the Eating Healthy section of the curriculum to include more commonly eaten Latino foods. While rice and beans are shown in the curriculum other foods should be included such as tortillas and platanos which were commonly mentioned both by health educat ors and patients. This change in curriculum was the most asked for by the health educators. More emphasis should also be put on the way foods are prepared in the Spanish curriculum. While many people fry their foods, Latinos do so more often and with lard or vegetable oil. Other me thods of cooking tr aditional Latino foods should be suggested so that they do not f eel like they have to give up their traditional diet. Ideally, demonstrations of how to cook traditional foods in more healthy ways should be included as well as recipes. More emphasis should be placed on reduced portion sizes for foods su ch as rice, beans and tortillas, which are consumed in large am ounts by many Latinos. Many Latinos prefer to eat their la rgest meal during the day rather than the evening. The curriculum should ta ke this into consideration, possibly switching the examples for lunch and dinn er that are present ed. In addition, many Latinos said that they never drin k milk, or do not like milk, because their stomachs are not accustomed to it. Other alternatives to milk such as soymilk or
122 lactose-free milk should be presented in the Spanish curriculum as many Latinos are lactose intolerant. Food discussi ons should also place importance on drinking water since many workers spend lo ng hours in the field and do not drink much water. Furthermore fruit juice is commonly made with large amounts of sugar; other alternatives should be given. Recommendation 2: Place more emphasis on entire family involvement in disease management, especially the patient is a female. Latino patients should be encouraged to make changes for the whole fa mily because they are also at risk, and it is usually the womans job to take care of her family at home. Health educators should try to emphasize to husbands the importance of helping to care for a diabetic wife. The Spanish curriculu m should make note of this as it seems to be an important issue for Latinos. Recommendation 3: Include food label reading in the Spanish curriculum. This is important for English-speakers as well, but even more so for Spanish-speakers because many of them cannot read the English labels on food pr oducts. The Spanish curriculum should include a picture of a food label with the appropriate translations in Spanish so that the Spanish-speakers can come to recognize what is in the foods they buy. This should also include how much of certain items on food labels diabeti cs should have in one day.
123 Recommendation 4: Although Latinos are more likely to belie ve that it was G ods will that they got diabetes and there is nothing they can do about it, emphasize that while diabetes is not curable and that patient s may have been destined to get diabetes, they can control the disease thr ough healthier eating and exercise. Recognize folk illnesses such as susto and nervios when discussing the reasons why people get diabetes. These illnesses do not necessarily have to be shown in the curriculum and workbooks but susto and nervios could be listed as cues for the health educators to ask or talk about on the back of the flipchart. Recommendation 5: Discuss or prompt discussion of home or folk remedies used to control diabetes. This internship and other studi es have shown that while Latinos trust pharmacists and physicians, they still may be using home remedies such as herbal teas and cactus to control their bl ood sugar. It is im portant that health educators emphasize that hom e remedies can cause dangerous interactions with pharmaceuticals and that patients should discuss any home remedies they are using with their doctors. Recommendation 6: Discuss depression, erectile dysfuncti on and alcohol consumption in the curriculum. While these may be very sensitive issues, especially for Latinos, they were commonly mentioned by health educators as important for their Latino patients. Women more commonly asked about erectile dysfunction in their
124 husbands. Although health educators shoul d be sensitive to the potential embarrassment these subjects can bring, they are important for the overall wellbeing of the patients. The patients also often asked about the effects of alcohol on their blood sugar. Furthermore, many of the health educators thou ght their Latino patients, especially the men, consumed alcohol often. Recommendation 7: Emphasize in the exercise portion of the curriculum that although working hard is good exercise, it is not enough to c ontrol diabetes and that other activities such as walking and dancing salsa or merengue are necessary to keep blood sugar levels under control. Advocate that Latino patients involve the whole family in these activities as exercise ma y be seen as a selfish activity that takes time away from family duties. Discuss ideal body image in relation to exercise. This could be placed as a cue on the back page that is the health educators teachi ng guide. Explain that being slightly overweight may be more beaut iful than being skinny, but that being very overweight can have severe consequences for diabetics and raise blood sugar levels and the need for medications. Recommendation 8: Change the pictures in the Spanish to curriculum to include more Latino characters. While the curriculum includes pi ctures of a variety of people to show that anyone can get diabetes, the focus is on a White woman and a Black man.
125 Latinos might identify with and relate bette r to a curriculum that includes more Latino characters. Recommendation 9: Develop a Spanish curriculum for Mexic ans that is separat e from that for other Latino groups from Central or South America. The Mexican dialect and diet are quite distinct from other Latino groups and most of the health educators recommended a separate curricu lum for Mexicans. It w ould be ideal to create a curriculum for each ethnic group but this will not likely be possible. The previous nine recommendations are of most importance for the Para Su Salud program. However, health educat ors teaching Spanish programs should be sensitive to some other issues that may affect the ways in which Latinos participate in the education and hea lth care systems. Low education and literacy levels may cause some Latinos to be weary of the classroom setting. Health educators should be sensitive to this and make sure patients are as comfortable as possible. As one health educator noted, small groups may make some Latinos more at ease in a class setting. Health educators should also be conscious of transportation issues for Lat inos. The data in this study was somewhat unclear as health educators sa id transportation was an issue for their patients but most patients said they drov e themselves. Health educators should ask their patients if they have reliable tr ansportation and if they do not, try to arrange it for them. Finally, immigration status may cause some Latinos to feel
126 nervous in the clinic setting. This did not appear to be the case in this study but health educators should be aware that it could be an issue for some. Internship Experience This internship provided me the opportunity to work both with a collaborative team in the University of South Florida College of Public Health, Department of Community and Family He alth, and with a large corporation, Pfizer Inc. Working with both offered positive learning experiences. The FHLS team consisted of an eval uation team and an implementa tion team, the team of which I was a member. Working closel y as the implementation team, Dr. Kay Perrin, Somer Goad and I negotiated and work ed with Pfizer, Inc. to develop an implementation guide for the Para Su Salud or For Your Health program. In addition, we trained the bilingual health educators to implement and teach the program and provided ongoing support and site visits throughout the study. Working with a corporation is a mu ch different experience from working with other academics. The politics and moti ves of each entity are very different and constant negotiation was required with Pf izer, Inc. to come to agreement on many issues. However, through severa l meetings, the program was finalized and successfully implemented in 14 communi ty health clinics around the state of Florida. This was a helpful experience for my future as an applied anthropologist in the field of public health. It is likel y that I will have to work with other large corporations and government organizations that may have different ideals than
127 myself. Through this internship, I was able to see that teamwork and negotiation, although sometimes a frustrating proce ss, can produce positive end results. Relevance for Applied Anthr opology and Public Health The purpose of this internship was to evaluate the cultural appropriateness of a type 2 diabetes educ ation program for Latinos in the community health clinics around the state of Florida. This thesis examines crosscultural, cross-linguistic and cross-ethnic barriers to health education. In this sense, the internship uses the theory and methods of anthropology to study a program for a cultural group, in this case Latinos. Ervin (2000:1) argues, [Anthropologys ] strengths are a vast and deep knowledge base, holism, insight s from qualitative methodolog ies, and most of all, grounded connections to communities realit ies, aspirations and needs. As a discipline, anthropology has always sought to demystify stereotypes, always advocating for the uniqueness of different cu ltures to be considered. In this sense, this internship wa s difficult to navigate becaus e Latinos comprise many different ethnicities and cultures, and to make general recommendations for the program goes against these beliefs. Howe ver, what can be argued is that the program can be better for Latinos in general. Furt hermore, it is unlikely that Pfizer will have the time, money, or re sources to develop an education program for the all of the diverse groups that make up Latinos.
128 Applied Anthropology lends itself well to the arena of public health, and this internship has provided the opportuni ty to use anthropology in a real life public health intervention. As Chambers (1985:75) contends, The participation of appli ed anthropologists in work related health care delivery and other aspects of health services has been encouraged in the United States through federal legisl ation which calls for the health planning on the local level [emphasis in original], where the anthropological approach proves espec ially useful in identifying the clientele of health services, in clarif ying their culture-specific health needs, and in evaluating the effectiv eness of health-care programs. Since this was not an anthropological research project and I was the only anthropologist on the team, and a graduate student at tha t, this internship and thesis provides one of the only opportuniti es for the anthropological voice to be heard and considered for the future of the Para Su Salud education program. This internship and thesis demonstrate s the importance of anthropology in public health and how the two disciplines compliment each other Public health seeks to protect people from diseases and encourages them to change harmful behaviors. As the Florida Health Literacy Study demonstrates, public health is also concerned with prevention programs aimed at specific problems that disproportionately affect minority and ec onomically disadvantaged groups (USF College of Public Health 2003). This inte rnship is important for public health because it seeks to improve an already successful program through greater consideration of the beliefs and practices of Latinos. Through this internship and thesis, par t of a collaboration the Department of Community and Family Health at the Un iversity of South Florida College of
129 Public Health and Pfizer Inc., I ha ve studied and evaluated a type 2 diabetes education for Medicaid and uninsured Latinos in community health clinics in the state of Florida. As a graduate student in public health and anthropology, this internship provided the perfect opport unity to combine the disciplines and demonstrate how they complement each ot her. Through this internship I was also able to demonstrate the positiv e effects applied anthropology theory and methods can have on a public health inte rvention for different cultural groups. As Hahn (1999:5) argues, The failure of so me public health programs to study and take into account the culture and society of the community toward which the program is directed has sometimes led to only partial program success or even to program demise. Anthropologists are set to help make sure that public health programs take culture into account, and t hat programs such as Pfizers can be successful across cultures. The recommendations provided here are based on data obtained from anthropological methods and its holistic appr oach, which considers the cultural values of a group in designing any inte rvention program for people of diverse cultures. The recommendations for the Para Su Salud program will be presented to Pfizer Inc. in the hope that they will be used to help make the education program even better than it already is for the Latinos who greatly need a diabetes education program sensitive to t heir values, beliefs and customs.
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141 Appendix A: Site Services Information Table 12: Site #30 Services Information In-house pharmacy at this site Pharmaceuticals delivered to this sites patients Transportation provided to patients at this site Medicaid eligibility screening pr ovided to patients at this site Formal systematic outreach efforts within this site Diagnostic laboratory services within this site Vision screening services within this site Podiatric services within this site Table 13: Site #31 Services Information In-house pharmacy at this site Pharmaceuticals delivered to this sites patients Transportation provided to patients at this site Medicaid eligibility screening pr ovided to patients at this site Formal systematic outreach efforts within this site Diagnostic laboratory services within this site Vision screening services within this site Podiatric services within this site Table 14: Site #34 Services Information In-house pharmacy at this site Pharmaceuticals delivered to this sites patients Transportation provided to patients at this site Medicaid eligibility screening pr ovided to patients at this site Formal systematic outreach efforts within this site Diagnostic laboratory services within this site Vision screening services within this site Podiatric services within this site Table 15: Site #37 Services Information In-house pharmacy at this site Pharmaceuticals delivered to this sites patients Transportation provided to patients at this site Medicaid eligibility screening pr ovided to patients at this site Formal systematic outreach efforts within this site Diagnostic laboratory services within this site Vision screening services within this site Podiatric services within this site
142 Appendix A (Continued) Table 16: Site #39 Services Information In-house pharmacy at this site Pharmaceuticals delivered to this sites patients Transportation provided to patients at this site Medicaid eligibility screening pr ovided to patients at this site Formal systematic outreach efforts within this site Diagnostic laboratory services within this site Vision screening services within this site Podiatric services within this site Table 17: Site #42 Services Information In-house pharmacy at this site Pharmaceuticals delivered to this sites patients Transportation provided to patients at this site Medicaid eligibility screening pr ovided to patients at this site Formal systematic outreach efforts within this site? Diagnostic laboratory services within this site? Vision screening services within this site? Podiatric services within this site? Table 18: Site #43 Services Information In-house pharmacy at this site Pharmaceuticals delivered to this sites patients Transportation provided to patients at this site Medicaid eligibility screening pr ovided to patients at this site Formal systematic outreach efforts within this site Diagnostic laboratory services within this site Vision screening services within this site Podiatric services within this site
143 Appendix B: Interview Guide 1. What have your experiences been with Spanish-speaking participants? 2. In your opinion, what issues ar e important to the Spanish-speaking participants? 3. What do the Spanish-speaking par ticipants say about how they got diabetes? Do they mention any things they think caused the diabetes such as behaviors or events? 4. In your opinion, do the Spanish-s peaking patients ever make statements about their lack of ability to control their diabetes or the outcomes of diabetes? 5. What do the Spanish-speaking par ticipants say about the diabetic symptoms they experience? 6. Do they ever mention susto or any other folk illness or term in connection with diabetes? W hat do they say? 7. How do the Spanish-speaking part icipants treat their diabetes? Do they ever mention home or folk remedies? If so, what? 8. Do the Spanish-speaking particip ants ever mention depression in connection with their diabetes? What do they say? If so, do more men or women mention it? 9. How do the Spanish-speaking partici pants describe their experiences with the health care system and/or clinic? 10. How do the Spanish-speaking patients get to the clinic? 11. Describe the atmosphere in the Spanish-speaking classes. 12. Do Spanish-speaking participants bring family members to class? More or less than English-speaking? 13. What role does family play in the Spanish-speaking classes? 14. In your opinion, what role does fam ily play in the disease management of the Spanish-speaking patients?
144 Appendix B (Continued) 15. Do you think that the Spanish-spe aking participants understand what you are teaching them? Do you think t hey might sometimes nod or agree out of respect or kindness even when they do not understand or, perhaps agree with what you are saying? How can you tell? 16. What foods are typically discu ssed in Spanish-speaking classes? 17. Are there foods that you think should be included in the Spanish curriculum? Which? 18. What do women say about cooking di fferent foods for a diabetic diet? 19. What do men say about eating diffe rent foods for a diabetic diet? 20. In your opinion, what are some barriers to changing diet that are mentioned in the Spanis h-speaking classes? 21. Do Spanish-speaking participants ever mention their stomachs being accustomed or unaccustomed to certain foods as a barrier for changing their diets? What do they say? 22. What do participants in the Spanish-speaking classes say about exercise? 23. Do Spanish-speaking participants ever discuss body image? In your opinion, what is the ideal body ima ge of Spanish-speaking participants? 24. Do the Spanish-speaking participant s ever talk about alcohol? If yes, what do they say? How much do they drink? 25. In general, what have your ex periences been with the Spanish curriculum? 26. In your opinion, what are the st rengths of the Spanish curriculum? 27. In your opinion, what are the w eaknesses of the Spanish curriculum? 28. Does the Spanish curriculum address t he issues that are important to the people in those classes? Why or wh y not? What are your suggestions?
145 Appendix C Patient Satisfaction Survey (English) Recently you participated in a st udy for patients with Diabetes and/or Hypertension; the study goal is to find ways to offer better quality serv ice for patients with these conditions. Your opinion is important to us. Thank you for taking the time to complete this survey. Disagree Agree 1. I enjoyed going to the classes. 1 2 3 4 5 2. I learned new facts about my disease in the classes. 1 2 3 4 5 3. I liked the way the teacher taught the classes. 1 2 3 4 5 4. I have made positive changes since I came to the classes. 1 2 3 4 5 5. The teacher made the classes easy to understand. 1 2 3 4 5 6. The teacher made the classes fun. 1 2 3 4 5 7. How many classes did you attend? a) 1 b) 2 c) 3 d) 4 8. Did anyone from your family attend the classes with you? a) Yes b) No 9. How did you get to the classes? a) I walked b) I drove c) A friend drove me d) A family member drove me e) I rode the bus 10. Was the time of the class good for you? a) Yes b) No
146 Appendix C (Continued) 11. When was your class held? a) Morning b) Afternoon c) Evening 12. Was the day of t he class good for you? a) Yes b) No 13. When was your class offered? a) Monday b) Tuesday c) Wednesday d) Thursday e) Friday 14. Was getting to the class easy for you? a) Yes b) No 15. Circle the gift that you use the most: a) Tote bag b) Passport to Your Health c) Calendar d) Magnet clip e) Pillbox f) Large refrigerator magnet 16. Circle the gift that you do not use too much: a) Tote bag b) Passport to Your Health c) Calendar d) Magnet clip e) Pillbox f) Large refrigerator magnet 17. What did you enjoy t he most about the classes? 18. What did you not enj oy about the classes? 19. What would you change to make the classes better? Thank you for your comments.
147 Appendix C (Continued) Patient Satisfaction Survey (Spanish) Recientemente usted particip en un estudio par a pacientes con Diabetes o Hipertensin, el objetivo de este estudio es de encontrar formas de ofrecer un servicio de mayor calidad a los pacientes que sufren de estas enfermedades. Su opinin es muy importante para nosotros. Gracias por tomarse el tiempo de completar esta encuesta No estoy Si estoy de acuerdo de acuerdo 1. Disfrut de las clases. 1 2 3 4 5 2. Aprend nuevas cosas acerca de m 1 2 3 4 5 enfermedad en las clases. 3. Me gust la forma en que el profesor 1 2 3 4 5 ense las clases. 4. He hecho buenos cambios desde que 1 2 3 4 5 asisto a estas clases. 5. El profesor hizo las clases fciles de 1 2 3 4 5 entender. 6. El profesor hizo las clases divertidas. 1 2 3 4 5 7. A cuntas clases asisti? a) 1 b) 2 c) 3 d) 4 8. Alguien de su familia asisti a las clases con usted? a) S b) No 9. Cmo vino a las clases? a) Camin b) Conduje c) Un amigo me trajo d) Un familiar me trajo e) Vine en bus 10. Fue el horario de clase favorable para usted? a) S b) No
148 Appendix C (Continued) 11. Cundo tenia clase? a) En la maana b) En la tarde c) En la noche 12. Fue el da de la semana en qu se llev a cabo la clase favorable para usted? a) S b) No 13. Cul da de la semana fue la clase? a) Lunes b) Martes c) Miercoles d) Viernes e) Jueves 14. Fue fcil para usted llegar a clase? a) S b) No 15. Encierre en un circulo el obsequio que usted usa ms: a) Bolsa b) Pasaporte para Su Salud c) Calendario d) Gancho de imn e) Cajita para pastillas f) Imn de refrigerador 16. Encierre en un circulo el obsequio que no usa mucho a) Bolsa b) Pasaporte para Su Salud c) Calendario d) Gancho de imn e) Cajita para pastillas f) Imn de refrigerador 17. Qu fue lo que le gust ms acerca de sus clases? ___________________________________________________________ 18. Qu fue lo que no le gust acerca de sus clases? ___________________________________________________________ 19. Qu cambiaria para mejorar las clases? ___________________________________________________________ ___________________________________________________________ Gracias por sus comentarios.
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O'Connor, Danielle R.
Comida sin frijoles no es comida
h [electronic resource] :
evaluation of a type 2 diabetes education program for Latinos /
by Danielle R. O'connor.
[Tampa, Fla.] :
University of South Florida,
Thesis (M.A.)--University of South Florida, 2003.
Includes bibliographical references.
Text (Electronic thesis) in PDF format.
System requirements: World Wide Web browser and PDF reader.
Mode of access: World Wide Web.
Title from PDF of title page.
Document formatted into pages; contains 157 pages.
ABSTRACT: This thesis describes an internship for the Department of Anthropology that was part of the Florida Health Literacy Study (FHLS) conducted at the University of South Florida College of Public Health, Department of Community and Family Health in the spring and summer of 2003. The FHLS implemented Pfizer Inc.'s For Your Health program, a type 2 diabetes and hypertension education programs, at 14 community health clinics across the state of Florida. The internship was designed to elicit the experiences of 10 bilingual health educators about their experiences and their perceptions of the experiences of their Latino patients with type 2 diabetes with the Spanish version of Pfizer'ts For Your Health or Para Su Salud type 2 diabetes education program. This internship examined the Para Su Salud program for its cultural appropriateness for the diverse Latino population in the community health clinics in Florida. This internship combined the fields of anthropology and public health to provide a holistic analysis of the issues important to the Latino Health Educators participating in Pfizer's Para Su Salud type 2 diabetes education program. Through anthropological methods including in-depth interviews, class and clinic observations and patient satisfaction surveys, this internship found that the program was well-liked in the community health clinics and it could provide more culturally appropriate themes and food options for type 2 diabetic Latinos in Florida. This thesis makes nine specific recommendations for improving the appropriateness and ultimate success of the Para Su Salud educational program.
Co-adviser: PhD, Linda M. Whiteford
Co-adviser: PhD, Skai Schwartz
community health clinics.
x Applied Anthropology
t USF Electronic Theses and Dissertations.