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DATE DUE DATE DUE DATE DUE MAR 1 7 2010 5/08 K:IProj/Acc&PreleIRC/DateDueindd RELATION OF ACCULTURATION TO GLYCEMIC CONTROL AND SELF- MANAGEMENT OF DIABETES IN HISPANIC ADULTS By Julie Plasencia A THESIS Submitted to Michigan State University in partial fulfillment of the requirements for the degree of MASTER OF SCIENCE Department of Food Science and Human Nutrition 2008 ABSTRACT THE RELATION OF ACCULTURATION TO GLYCEMIC CONTROL AND SELF- MANAGEMENT OF DIABETES IN HISPANIC ADULTS WITH TYPE 2 DIABETES By Julie Plasencia Prevalence of type 2 diabetes in the US is high especially among Hispanic Americans. Self-management practices and acculturation in this group (Mexican orientation or Anglo orientation) may be important determinants of diabetes control. The objective of this qualitative study triangulated with descriptive quantitative data was to assess if and how self-management practices and acculturation level were related in a sample of low income, Hispanic adults with physician diagnosed type 2 diabetes, (in either acceptable or unacceptable glycemic control). This study was conducted in four steps. 1) a preliminary chart review for patient eligibility, 2) an in-depth interview, which included assessment of acculturation level, one 24-hr dietary recall and a short survey on sociodemographic and self-care behaviors, 3) a medical chart review to assess biomedical indicators, and 4) a second in-person or telephone 24 hr dietary recall. The major finding was that health and employment status were key factors related to self-management and glycemic control ( 11 of 17 unacceptably controlled subjects were disabled). In addition Mexican orientation favored family support and over-reliance on medication for disease management. Therefore, culturally sensitive patient-specific tailored interventions are important for enhancing efficacy of disease management. Dedicated to my family, especially my father who lives with type 2 diabetes and my friends who have been my family while I've been far away from mine. ACKNOWLEDGEMENTS First I would like to thank my committee for their patience through this research process, which was a true learning experience every step of the way. I want to thank Dr. Lorraine Weatherspoon and Dr. Sharon Hoerr for being excellent teachers and mentors to me. I also want to thank Dr. Hoerr, Dr. Song and Dr. Weatherspoon’s labs for all the support, encouragement and knowledge that I gained from each one of you, but more importantly, I want to thank you for your friendship. I also want to thank my family who was so supportive and patient with me. I love you! I also want to thank all my friends who were like my family while I was away from mine. I especially want to thank Carrie and Andy who helped me survive my last semester because I couldn't imagine doing it without you by my side. Finally, Dr. Weatherspoon, there are not enough words to thank you for everything you have done for me. Thank you for being a friend, a parent, a teacher and a "terrorizor" when I needed you! TABLE OF CONTENTS LIST OF TABLES ............................................................................................... vii LIST OF FIGURES ............................................................................................. viii CHAPTER 1 INTRODUCTION .................................................................................................. 1 Specific Research Objectives ............................................................................... 6 CHAPTER 2 REVIEW OF LITERATURE .................................................................................. 8 2.1 Diabetes Mellitus .................................................................................. 8 2.2 Treatment and Control of Type 2 Diabetes ........................................ 11 2.2.1 Glycemic Control .................................................................. 12 2.3 Type 2 Diabetes in Hispanic Adults ................................................... 12 2.3.1 Epidemiology ........................................................................ 12 2.3.2 Diabetes Cost ....................................................................... 13 2.4 Factors Influencing Diabetes Control ................................................. 14 2.4.1 Individual Factors ................................................................. 14 2.4.1.1 Acculturation ........................................................... 15 2.4.1.2 Years of Schooling ................................................. 18 2.4.1.3 Duration of Diabetes ............................................... 19 2.4.1.4 Diabetes Knowledge ............................................... 19 2.4.2 Diabetes Management-Related Factors ............................... 20 2.4.2.1 Diabetes Self-management .................................... 20 2.4.2.1.1 Physical Activity Behaviors ....................... 2O 2.4.2.1.2 Eating Behaviors ....................................... 22 2.4.2.1.3 Weight Control .......................................... 25 2.4.2.1.4 Medication Adherence .............................. 25 2.4.2.1.5 Self-monitoring Blood Glucose ................. 26 2.4.2.1.6 Medical Monitoring .................................... 27 2.4.2.2 Diabetes Self-management Strategies ................... 27 2.4.2.3 Measuring Self-Management Behaviors ................. 29 2.4.2.4 Barriers and Facilitators to Diabetes Self- management ...................................................................... 30 2.4.2.4.1 Environmental Factors .............................. 30 2.4.2.4.2 Socioeconomic Status .............................. 31 2.4.2.4.3 Disability in Low-income Adults ................ 32 2.4.2.4.4 Medical Insurance and Access to Health Care ......................................................................... 34 2.4.2.4.5 Social Support .......................................... 36 2.5 Theoretical foundation for Self-management Behaviors .................... 37 2.5.1 Ecological Approaches to Self-management ........................ 37 2.5.2 Enhanced Behavior Performance model .............................. 39 CHAPTER 3 METHODS .......................................................................................................... 43 3.1 Design ................................................................................................ 43 3.2 Site ..................................................................................................... 43 3.3 Participants ........................................................................................ 43 3.4 Procedures ........................................................................................ 44 3.5 Instruments ........................................................................................ 46 3.6 Data Analysis ..................................................................................... 53 CHAPTER 4 RESULTS ........................................................................................................... 55 4.1 Descriptive Data ................................................................................. 55 4.2 Key Dietary Data ................................................................................ 58 4.3 Facilitators and Barriers, Descriptive Data ......................................... 61 4.3.1 Individual Factors ................................................................. 66 4.3.2 Behavior ............................................................................... 69 4.3.3 Environmental Factors ......................................................... 70 4.4 Revisiting the Objective of the Study ................................................. 78 CHAPTER 5 DISCUSSION ..................................................................................................... 80 5.1 Individual Factors ............................................................................... 80 5.2 Behavior/Lifestyle Factors .................................................................. 82 5.3 Environmental Factors ....................................................................... 85 5.3.1 Family .................................................................................. 85 5.3.2 Health Care Institution .......................................................... 85 5.3.3 Neighborhood ....................................................................... 86 5.4 Implications for Practice ..................................................................... 87 5.5 Strengths and Limitations .................................................................. 88 5.6 Recruitment Challenges ..................................................................... 89 5.7 Conclusions ....................................................................................... 91 APPENDICES. .................................................................................................. 92 BIBLIOGRAPHY. . ............................................................................................ 156 vi LIST OF TABLES Table 2.1 Risk factors for Type 2 Diabetes. ........................................................ 11 Table 2.2 Major nutrition recommendations and interventions-secondary prevention. .......................................................................................................... 23 Table 2.3 Summary of Nutrition Recommendations 2006, American Diabetes Association. ........................................................................................................ 23 Table 3.1 Comprehensive study sequence for obtaining qualitative and quantitative data. ................................................................................................ 45 Table 3.2 Research objectives, research questions and corresponding interview questions. ........................................................................................................... 47 Table 4.1 Demographics, acculturation, anthropometrics of the sample by glycemic control or acculturation. ....................................................................... 56 Table 4.2 Body Mass Index mean (:80) by acculturation and glycemic contro|.58 Table 4.3 Selected nutrients and diet history items from two 24-hour diet recalls, by glycemic control groups and by acculturation groups. ................................... 59 Table 4.4 Frequency of types of food reported by glycemic control and acculturation groups from two days of dietary intake .......................................... 61 Table 4.5. Frequency of responses dichomitized as facilitators and barriers for glycemic control and organized by participant subgroups of glycemic control or acculturation and classified by ecological model parameters. ............................ 63 Table 4.6 Frequency of diabetes self management behaviors by glycemic control and acculturation subgroups ............................................................................... 66 Table 4.7 Frequency of individual factors related to diabetes by glycemic control and acculturation status ...................................................................................... 67 Table 4.8 Environmental factors by glycemic control and acculturation subgroups. .......................................................................................................... 71 vii LIST OF FIGURES Figure 2.1 Social Ecological Theory: Correspondence of Ecological Levels of Influence with Resources and Supports for Self-management ................ 38 Figure 2.2 Research Model for Diabetes Self-care Management (Adapted Self- efficacy & Enhanced-behavior Performance Model). ............................... 40 Figure 2.3 Integrated Social Ecological Model and Adapted Self-efficacy & Enhanced-behavior Performance Model for Diabetes Self-Management.42 Figure 3.1 Acculturation Rating Scale for Mexican Americans-ll Depicting Multidimensional, Orthogonal, Bicultural Classifications .......................... 51 Figure 4.1. Integrated Social Ecological Model and Diabetes Self-Management with Barriers and Facilitators .................................................................... 65 viii CHAPTER 1 INTRODUCTION Diabetes incidence and prevalence, especially type 2 diabetes, the predominant form of the disease, in the United States is high and rising rapidly (Centers for Disease Control and Prevention (CDC), 2004; United States Census Bureau (Census), 2004; American Diabetes Association (ADA), 2002). In 1995, the United States was ranked 3rd nation in the world for individuals with diabetes (Martorell, 2005), and in 2002, diabetes was the fifth leading cause of death in the country according to the ADA (ADA, 2002). Hispanic-Americans and other populations of color are disproportionately affected by diabetes incidence and prevalence as well as complications of the disease. Although numerous culturally appropriate programs for Hispanic- Americans have been developed to increase awareness of the magnitude of the problem (Garcia, 2005; Brown et. al., 2005; Phillis-Tsimikas, 2004; Banister, 2004), the rates of diabetes among the Hispanic population continue to rise. One cross-sectional study analyzed the National Health and Nutrition Examination Survey (NHANES) participants from 1999-2002 and showed that Mexican- Americans were more likely to be diagnosed and treated for Type 2 diabetes, but the level of good/acceptable diabetes control was much lower in those who were being treated (10.9% in good glycemic control) compared to non-Hispanic white (55.1%) (Hertz et al., 2006). This shows that there is a need to identify some of the barriers and facilitators for achieving glycemic control, and how they are affected by mediating factors in the Hispanic population. The paucity of data on potentially mediating factors such as acculturation‘, country of ethnic origin, years of residence in the United States and cultural beliefs on this devastating disease justifies an in depth study of how these important considerations may be contributing to disease prevalence and control disparities. There have been limited studies on whether or how acculturation relates to glycemic control, but there is reason to believe it could play a role in both the etiology and control of diabetes (Caban et al., 2006; Martorell, 2005). Untreated or poorly managed type 2 diabetes can lead to a series of complications, namely neuropathy, retinopathy and nephropathy which can lead to increased risk for infection, blindness and kidney failure respectively, and cause early mortality. The treatment recommendations for diabetes by the American Diabetes Association are based on the belief that early diagnosis, blood sugar control and related risk factors (e.g. blood lipids, weight, diet and physical activity) can reduce, delay or prevent these complications and prevent early mortality as evidenced in the Diabetes Control and Complications Trial (Ahern, 1993). Fortunately, diabetes complications can be prevented or managed through consistent self-management practices and achievement of good glycemic control. Such practices include taking medication as prescribed, self-monitoring blood glucose via finger prick tests, exercising regularly, visiting the doctor as often as prescribed , self examination of feet, and adhering to a recommended diet (Ahern et al., 1993; Turner et al., 1998). Thus, patients with diabetes must ' Acculturation is defined as the extent to which mainstream customs, beliefs, and practices are adopted by immigrants. adopt and maintain multiple self-care behaviors to achieve and sustain good glycemic control (Ahern et al., 1993; Turner et al., 1998). Not only would improved self-management and glycemic control reduce the incidence of complications, but it would also significantly reduce costs. The literature on type 2 diabetes also shows that diabetes control can be influenced by socioeconomic status (Himmelgreen et al., 1998) since childhood (Brown et al., 2004; Himmelgreen et al., 1998). In addition, communities may play an instrumental role in the health status of its residents through the availability of health care services, neighborhood characteristics that promote health, such as access to stores with healthy food choices and places to exercise, and attitudes toward health and health behaviors in the community (Brown et al., 2004). An important and effective aspect of treating diabetes is providing culturally relevant self-management education tailored for the targeted population (Brown et al., 2002). Such educational interventions have been effective in promoting improved metabolic control and a greater or improved understanding of the disease in Mexican-Americans with diabetes (Brown et al., 2005). When a group of 256 Mexican-American adults with diabetes were provided with culturally relevant diabetes education, HbA1 C (glycemic control) levels improved by 1.4 percentage points (Brown et al., 2002). Findings demonstrated the need for and importance of diabetes education programs that are culturally specific for this population. However, the parameters on which to focus these programs and enhance success might differ. Hence, the degree of acculturation may be a significant factor for consideration. An important risk factor for diet related disease is dietary quality. Researchers in San Antonio, Texas demonstrated that higher acculturation towards mainstream culture decreased the risk for diabetes and obesity (Hazudao et al., 1988). However, research surrounding diet quality and acculturation has shown that as the acculturation of Hispanics in the United States increases, diet quality decreases (Aldrich et al., 2000; Neuhouser et al., 2004; Romero-Gwynn et al., 2000). Acculturation is especially important when one considers the role of dietary recommendation adherence, an integral aspect of self-management. Research has therefore resulted in somewhat contradictory findings regarding whether or not acculturation is an indicator of risk for developing diabetes and diet-related management of the disease. In diet-acculturation relationship studies from California (Romero-Gwyn et., 1997), Washington State (Neuhouser et al., 2004), Massachusetts (Romero- Gwynn et al., 2000), and Connecticut (Himmelgreen et al., 1998) showed that diet quality decreased as acculturation increased. In addition, findings from these studies showed that Body Mass Index (BMI), a well accepted indicator of poor dietary practices and overweight was positively correlated with acculturation in a community sample (Romero-Gwynn et al., 2000). Similarly in Monterey County, California acculturation was linked not only to poor dietary behavior, but low levels of exercise as well (Hubert et al., 2005). Potential explanations to these conflicting findings might be due to different definitions for acculturation and/or differences in geographic locations where the studies were conducted. In an essay published by the CDC, Martorell (2005) explains that there is a transition in nutrition when economic development and urbanization occurs (Caban et al., 2006; Martorell, 2005). Socio economic status (SES) is important to consider because it might relate to achieving treatment and management goals, via limited financial and time resources, as well as health care knowledge. In the United States, people of Hispanic descent can acculturate to their environment and attain “increased food security, increased availability of cheap sources of fat in the form of vegetable oils, more eating away from home, less arduous modern jobs, and increased in sedentary recreation” (Martorell, 2005). Availability of health insurance, food security, cheap sources of fat and refined sugars, eating away from home, sedentary behavior and white-collar jobs have all been associated with the prevalence of obesity and diabetes (Martorell, 2005). In addition, education status, duration of diabetes and social support are important considerations in disease management. In a sub-study ofthe San Antonio Heart study, higher education levels were associated with improved blood pressure in women, but not for men (Hazuda et al., 1988). Other potentially related factors to glycemic control are years of schooling and access to health care. Most research has focused on acculturation and diet, not on acculturation as it relates to self-management of diseases such as type 2 diabetes. This discrepancy is evident in the body of research surrounding acculturation, diet and disease, but somewhat surprising given the importance placed on reducing health disparities. By studying how acculturation can affect the dietary, physical activity, and other self-management behavior components important for diabetes prevention and control, we move one step closer to understanding the connection between acculturation and diabetes. Therefore, a primary interest in this study was acculturation as a mediating factor for diabetes self-management and hence control in adults of Hispanic descent. This proposed study in low-income Hispanic adults in Michigan explored if and how acculturation relates to glycemic control and self-management of diabetes. The goal was to determine in a sample of low income, Hispanic adults with physician diagnosed Type 2 diabetes, either acceptably or unacceptably controlledz, the extent to which acculturation and associative factors influence diabetes self—management practices recommended in a position statement published by the ADA in 2006: physical activity, eating behaviors, weight control, medication adherence, self—monitoring blood glucose, and medical monitoring (visiting with the doctor and ophthalmologist once per year). Of specific interest, were barriers and facilitators to achieving these recommended behaviors. Specific Research Objectives 1) To describe and contrast self-management behaviors in Hispanic adults with physician diagnosed type 2 diabetes and who are either in acceptable (HbA1c < 8) or unacceptable glycemic control (HbA1c 2 8). 2 Acceptable Control =HbA1c<8°/o , unacceptable control: HbA1c 28% 2) To determine if and how acculturation is related to self-management behaviors and diabetes control in Hispanic adults with physician diagnosed type 2 diabetes and who are either in acceptable (HbA1c < 8) or unacceptable glycemic control (HbAIC 3 8). The current study is the first to qualitatively provide an in-depth understanding of the role of acculturation in facilitating or hindering self- management and control in Hispanic adults with type 2 diabetes. This information is critical for the development of culturally appropriate interventions, and designing tools for treating pe0ple of Hispanic descent (Bowie et al., 2007; Brown et al., 2005; Mauldon et al., 2006). CHAPTER 2 REVIEW OF LITERATURE The literature review includes a description of diabetes mellitus and Type 2 diabetes in Hispanic adults. A general description of epidemiology, diagnosis, associated factors, treatment and diabetes control is discussed. Finally, socio- demographic factors, seIf-care behaviors and acculturation as they relate to diabetes control are reviewed. 2.1 Diabetes Mellitus Diabetes mellitus is a disorder of glucose metabolism in which abnormally high levels of blood glucose result from defects in insulin production, insulin action, or both. Complications of diabetes can lead to serious consequences that are costly to manage and ultimately lead to premature death. Fortunately, there are steps that can be taken in order to control the disease and lower the risks of complications. There are two distinct types of diabetes mellitus: insulin- dependent more widely recognized as Type 1 and non-insulin-dependent diabetes, typically referred to as Type 2 diabetes. Type 1 diabetes develops when the body's immune system destroys pancreatic beta cells, the only cells in the body that make the hormone insulin that regulates blood glucose. This form of diabetes usually strikes children and young adults, although disease onset can occur at any age. According to the Centers for Disease Control and Prevention (CDC), Type 1 diabetes may account for 5% to 10% of all diagnosed cases of diabetes (CDC, 2007). Risk factors for type 1 diabetes may include autoimmune, genetic, and environmental factors (CDC, 2007). Type 2 diabetes usually begins as insulin resistance, a disorder in which the cells do not use insulin properly, and may account for about 90% to 95% of all diagnosed cases of diabetes (CDC, 2007). As the need for insulin rises, the pancreas gradually loses its ability to produce insulin. Type 2 diabetes is associated with older age, obesity, family history of diabetes, history of gestational diabetes, impaired glucose metabolism, physical inactivity, and race/ethnicity. Type 2 diabetes has increasingly been diagnosed in children and adolescents with cases recently detected in children as young as 6 years (CDC, 2007; Kaufman, 2005; Lee et al., 2006; Liese et al., 2006; Pinhas-Hamiel et al., 2005). Type 2 diabetes has been referred to as a national epidemic in the United States, representing 90-95% of all newly diagnosed cases of diabetes (CDC, 2007) The prevalence of diabetes in the adult population (type 1 or 2) was 6.2% nationwide (Adler et al., 2003). According to data obtained from the National Health and Nutrition Examination Survey (NHANES) from 1999-2000, crude prevalence among US adults was 6.5%, 5.6% in non-Hispanic whites, 10% in non-Hispanic blacks and 6.5% in Mexican Americans. Prevalence rose with age in all populations reaching 15.8% at >65 years of age, and age and sex standardized prevalence of diagnosed diabetes 10.4% among Mexican Americans (Cowie et al., 2006). In 2005, 20.8 million people in the United States had diabetes, that is 7% of the population and 6.2 million people were still undiagnosed. Of people age 60 years and older, 20.9% have diabetes, which totals 10.3 million people in that age group. The incidence of diabetes continues to rise, with 1.5 million new cases of people diagnosed with diabetes in 2005 (CDC, 2007). When undiagnosed and/ or left untreated or poorly controlled, diabetes causes life threatening complications that typically occur within 10-20 years from the time of disease onset (Adler et al., 2003). Complications arising from undiagnosed or poorly controlled diabetes significantly impacts morbidity and mortality through micro and macrovascular aberrations such as cardiovascular disease, nephropathy, neuropathy, and retinopathy (CDC, 2007). Diabetes is one of the leading causes of blindness, renal failure, peripheral nerve damage, cardiovascular disease, stroke and non-traumatic amputation of lower limbs in the United States (Adler et al., 2003; Ahern et al., 1993; Turner et al., 1998). The identification of risk factors and “pre-identifiers” for type 2 diabetes, which have been clearly defined from a clinical standpoint, are key in recognizing individual and family risk. These risk factors are summarized in Table 2.1. Treatment and outcomes are based on expert opinion. Screening for type 2 diabetes in asymptomatic individuals should be considered by health care providers at 3-year intervals beginning at age 45, particularly in those with BMI 225 kg/m2 (Murata et al., 2003) Testing should be considered at a younger age or be carried out more frequently in individuals who are overweight and have one or more of the other risk factors shown in table 2.1 (Murata et al., 2003) 10 Table 2.1 Risk factors for Type 2 Diabetes. List of Risk Factors Family History of diabetes (i.e., parents or siblings with diabetes) Obesity (i.e., 220% over desired body weight or BMI 227 kg/mz) Habitual physical inactivity Race/ethnicity (e.g., African American, Hispanic-American, Native American, Asian-American, and Pacific Islander) Previously identified Impaired Glucose Tolerance (IGT) or Impaired Fasting Glucose (IFG) Hypertension (2 140/90 mmHg in adults) HDL cholesterol 5 35mg/dl (0.90 mmol/L) and/or a triglyceride levels 2250 mg/dl (2.82 mmol/L) History of Gestational Diabetes Mellitus or delivery of a baby weighing > 9 lbs Polycystic ovary syndrome 2.2 Treatment and Control of Type 2 Diabetes According to the Nutrition Recommendations and Interventions for Diabetes published in 2006, interventions, which include guidelines for self- management of diabetes, should be tailored to target each stage of the disease: preventing diabetes (primary prevention), controlling diabetes (secondary prevention) and treating and controlling diabetes complications (tertiary prevention) (Armstrong, 2006). Self-care/self management is critical for achieving good control. 11 2.2.1 Glycemic Control Glycosylated hemoglobin (GHB) is the glycosylated form of hemoglobin A, (hemoglobin Me) which constitutes 90-95% of adult hemoglobin and that of infants older than six months (Torre et al., 1981 ). GHB is considered the best indictor of a patient's average glycemic control over the prior 120 day period (Blanc et al., 1981;Gabbay, 1982; Lenzi et al., 1987; Torre et al., 1981). The American Diabetes Association defines normal glycemic control as hemoglobin A1c (HbA1c): 4-6%; goal for HbA1c is < 7%, and additional action is required if HbA1c > 8% (ADA, 2006). This value should reflect little to no change in blood glucose and hence maintain near non-diabetes levels as possible in a well controlled individual. Researchers have shown significant correlations between this measure and that of values for other indices of glycemic control such as fasting blood sugar (Gabbay, 1982; Rao et al., 1986). 2.3 Type 2 Diabetes in Hispanic Adults Diabetes and other obesity-related diseases disproportionately affect Hispanic adults and other populations of color in the US. The following section discusses epidemiology and costs of diabetes for US. adults with specific facts that pertain to Hispanic adults in the US. 2.3.1 Epidemiology The prevalence of diabetes in the US is especially high in minority populations and indeed in persons of Hispanic descent (ADA, 2002; CDC, 2007). From 1997 to 2004, diabetes incidence increased 34% in the Hispanic population (from 7.4 to 9.9 per 1000 population) (CDC, 2007). It is predicted that nearly 1/2 12 of Hispanic children born in the year 2000 are likely to develop diabetes in their lifetime. It the disease is not identified early or managed adequately, health related problems in this population will concomitantly increase significantly because according to the US Census Bureau, the Hispanic population continues to grow rapidly and age (Narayan et al., 2003). Persons of Hispanic descent are the fastest growing minority group in the country. However, they also have the lowest rates of insurance. Without access to proper health care or the ability to pay for it, diabetes can progress and lead to a number of health problems which are expensive to treat (Raza, 2007). 2.3.2 Diabetes Cost The direct and indirect costs of treating the disease and associated complications is high. According to the American Diabetes Association the cost of diabetes will rise from $132 billion in 2002 to $192 billion by the year 2020 (Hogan et al., 2003). The alarming costs of type 2 diabetes were shown in one study that looked at a random sample of 1,364 subjects with type 2 diabetes, who were members of a Michigan maintenance organization. They showed the annual medical costs of diabetes for white men ($1700) and women ($2000) among individuals who were controlling their type 2 diabetes with diet, and who had a BMI of 30 kg/m2 and no microvascular, neuropathic, or cardiovascular complications, and respectively (Brandle et al., 2003). This same study showed that additional costs for a white male can rise up to $10,500 annually if his BMI was 38 kg/mz, and he was using insulin therapy, on high blood pressure medication, had a history of myocardial infarction, was suffering form 13 microalbuminuria, and had peripheral vascular disease (Brandle et al., 2003). Even more alarming is the cost for a white male with the same conditions previously described, but with end stage renal disease; $57,200 annually (Brandle et al., 2003). In one study, Mexican-Americans in the National Health and Nutrition Examination Survey (NHANES) from 1999-2002, were compared with non- Hispanic white adult populations with respect to prevalence, awareness, treatment and control of hypertension, dyslipidemia and type 2 diabetes (Hertz et al., 2006). Findings indicated that Mexican-Americans were more likely to be diagnosed and pharmacologically treated for their type 2 diabetes, but were more poorly controlled (only 28.2% of those being treated had an HbA1c <7%) than the non-Hispanic whites with type 2 diabetes (51.9% of those treated had a HBA1c <7%) (Hertz et al., 2006). 2.4 Factors Influencing Diabetes Control Although diabetes prevalence is high among Hispanic persons in the US, there are many individual, lifestyle and environmental factors that play a role in progress and incidence of chronic diseases, and should be considered when addressing patient education for chronic diseases such as diabetes. 2.4.1 Individual Factors Some factors associated with diabetes self-management are those that are specific to each individual person. These include acculturation, years of schooling, duration of diabetes and diabetes knowledge. Each of these 14 components interacts with environmental and behavior factors that ultimately affect glycemic control. 2.4.1.1 Acculturation In the Hispanic population, there is a huge variation in length of exposure to and assumption of US or mainstream cultural norms. An important consideration therefore in the Hispanic and any other immigrant population, is the extent to which acculturation might play a role in disease prevalence and/ or control. There have been limited studies on whether or how acculturation relates to glycemic control, but there is reason to believe it could play a role in both the etiology and control of diabetes (Martorell, 2005). In an essay published by the CDC in 2005, Martorell explains that there is a transition in nutritional behavior, when economic development and urbanization occurs. In the United States, Hispanics can acculturate to their environment and attain “increased food security, increased availability of cheap sources of fat in the form of vegetable oils, more eating away from home, less arduous modern jobs, and an increase in sedentary recreation” (Martorell, 2005). In another paper published in Epidemiology Review, the authors stated that type 2 diabetes can be influenced by SES since childhood, and in addition communities may play an instrumental role in the health status of its residents through the availability of health care services, neighborhood characteristics that promote health, such as access to stores with healthy food choices and places to exercise, and attitudes toward health and health behaviors in those communities (Brown et al., 2004). There is a need for further research on the relation of acculturation to glycemic control in high-risk populations of limited income, in particular Hispanics 15 with Type 2 diabetes. Potential explanations to these conflicting findings might be due to different definitions for acculturation and/or differences in geographic locations where the studies were conducted. The bidimensional model of acculturation is more commonly used in research studies involving ethnic populations. After comparing the unidimensional scales (Suinn-Lew Asian Self-Identity Acculturation) and the bidimensional model (Vancouver Index of Acculturation, in context of personality, self identity and adjustment), in 2000, Ryder et al. concluded that the bidimensional model constitutes a broader more valid framework for understanding acculturation. The bidimensional model also states that acculturation can be more completely understood when heritage and mainstream culture identities are seen relatively independent of each other (Ryder et al., 2000). The original Acculturation Rating Scale for Mexican American scale was uni-dimensional and has since been revised to a bidimensional approach for assessing the acculturation processes (Cuellar et al., 1995). The ARSMA-ll- Scale, developed by Israel Cuellar was validated with a population of Mexican American youth and adults. Although the name implies that this instrument is used for Mexican Americans, it has been adapted for use with other Latino subgroups (Solis et al., 1990). The ARSMA-ll measures cultural orientation of Mexican and non-Hispanic white cultures independently rather than on one scale which forces a person to lean on one culture more than the other (Cuellar et al., 1 995). 16 An important risk factor for diet-related disease is dietary quality. In this instance, it is a component of self-management of diabetes and has a relation to level of acculturation. Interestingly, research surrounding diet quality and acculturation has shown that as the acculturation of Hispanics in the United States increases, diet quality decreases (Aldrich et al., 2000; Neuhouser et al., 2004; Romero-gwynn et al., 2000). Most research has focused on acculturation and diet, not on acculturation as it relates to disease self management like diabetes. This discrepancy is evident in the body of research surrounding acculturation, diet and disease, but somewhat surprising given the importance placed on reducing health disparities. Research has resulted in somewhat contradictory findings regarding whether or not acculturation is an indicator for diet-related management of diabetes. Research in San Antonio, Texas has shown that higher acculturation towards mainstream culture decreased the risk for diabetes and obesity (Hazuda et al., 1988; Hazuda et al., 1991). But in diet-acculturation relationships studies done in California (Romero-Gwynn et al., 1997), Washington State (Neuhouser et al., 2004), Massachusetts (Romero-Gwynn et al., 2000), Connecticut (Himmelgreen et al., 1998) and others, diet quality decreased as acculturation increased. For example, higher acculturation was the strongest correlate of obesity, measured by BMI, in a community sample in Monterey County, California (P < 0.001 ), followed by less exercise and poorer diet (P < 0.05) (Hubert et al., 2005). In 2000, Aldrich et al. found that although Spanish- speaking Hispanics knew less than other demographic groups about nutrients in 17 foods and diet-disease connections, Hispanics generally attached more importance to having a healthful diet than did English-speaking Hispanics and non-Hispanic whites (Aldrich et al., 2000). In another study, it was found that Mexican Americans had higher rates of leisure time physical activity (Cantero et al., 1999; Lara et al., 2005). High levels of acculturation, based on a bidimensional scale, among Latinos is associated with increased rate of cancer, infant mortality, and other indicators of poor physical and mental health (Abraido- Lanza et al., 2006). This suggests that Latinos may be exposed to different risk factors or may adopt unhealthy behaviors that result in shifts in morbidity and mortality for various diseases. 2.4.1.2 Years of Schooling Diabetes control has been positively influenced by years of schooling according to various studies (Maty, et al., 2005; Paz et al., 2006; Rothman et al., 2005; Sousa et al., 2004). The Los Angeles Latino Eye Study showed that those who had less than a high school education were more likely to be poorly controlled compared to those who did have a high school education (odds ratio: 1.5; 95% confidence interval, 1.1—2.2) (Paz et al., 2006). In the Alameda County Study, 6,147 adults were followed over 34 years. It was found that socioeconomic disadvantage, especially with low educational attainment, was a significant predictor of incidence of Type 2 diabetes, and those respondents with less than 2 years of education had 50% excess risk compared with those with more education (Maty et al., 2005). A study that validated the Spoken Knowledge in Low Literacy in Diabetes scale (SKILLD) for patients with type 2 diabetes found that higher performance on the SKILLD test was significantly 18 correlated with higher education level (r = 0.36), and when dichotomized, patients with low SKILLD scores (< or = 50%) had significantly higher HbA1 C values (11.2% vs. 10.3%, P < .01) (Rothman et al., 2005). In a study that was aimed to examine the relationship between self-efficacy and various diabetes self- management factors in a convenient sample of 141 insulin-requiring individuals with diabetes, it was found that diabetes knowledge was highly correlated with level of education (p < .01) (Sousa et al., 2004). In a sub study of the San Antonio Heart Study, higher education levels were associated with improved blood pressure in women, but not for men (Hazuda et al., 1988). 2.4.1.3 Duration of Diabetes Duration of diabetes is often positively associated with poorly controlled type 2 diabetes. In a longitudinal study where observational data was collected on 573 patients of diverse ethnicity with type 2 diabetes from Project Dulce, a program in San Diego County designed to care for an under-served population with diabetes, it was found that duration of diabetes resulted in higher mean HbA1c values (Benoit et al., 2005). In another study of 393 patients with type 2 diabetes in the Michigan Diabetes in Communities ll Study, a longer time since diagnosis (OR for each 5 years duration = 1.28; 95% CI 1.07-1.53) corresponded to the increased likelihood of poor control (Blaum et al., 1997). 2.4.1.4 Diabetes Knowledge While knowledge about a disease does not necessarily result in better self-care, it is considered a potentially important adjunct to behavior change. For example, a clearer understanding of the disease progress and implications might serve as a motivating factor to institute life changing or saving practices. In a 19 convenient sample of 141 insulin-requiring individuals with diabetes, knowledge in younger individuals was found to be higher than older individuals possibly because older individuals might not have received the same depth of information when diagnosed compared to younger individuals (Sousa et al., 2004). Older individuals however, had significantly better diabetes self-care management, suggesting that over time, they may have developed greater self-care management skills (Sousa et al., 2004). 2.4.2 Diabetes Management-Related Factors Behavioral or lifestyle factors that contribute to diabetes control include adherence to self-management recommendations, barriers and facilitators to following these recommendations, diabetes education and the ability of the health care provider to measure adherence to recommendations. 2.4.2.1 Diabetes Self-management Recommendations of the American Diabetes Association include physical activity, healthy eating behaviors, weight control, adherence to medication prescription, self-monitoring blood glucose and medical monitoring (visiting with physician and ophthalmologist once per year) and are discussed below. 2.4.2.1.1 Physical Activity Behaviors Overall 31% of individuals with type 2 diabetes in the US. population report no regular physical activity and 38% report less than recommended levels of physical activity (Nelson et al., 2002). Mexican Americans as well as women, persons age 65 and older, African Americans and those using insulin to treat their diabetes were more likely to report engaging in insufficient physical activity 20 (Nelson et al., 2002). Those who had an income below the poverty level and less than a high school education were also more likely to engage in insufficient physical activity (Nelson et al., 2002). Hispanics in the NHANES III reported generally being less active than whites; women were generally less active than men; and individuals with lower incomes and less education were less active than more educated whites with higher incomes (Wood, 2004). Four out of ten Hispanics in NHANES I" did not engage in any leisure time activity in the month preceding data collection (Wood, 2004). Women comprised 70% of those doing no physical activity and 45.5% of total females in the research population (Wood, 2004). Of those who were physically active, gardening (31.8%) and walking (30%) were the most preferred activities (Wood, 2004). Walking was also the preferred leisure time physical activity preferred by the youngest group 17-25 year olds (Wood, 2004). Men were also more likely to engage in physical activity as part of their occupation and women as a whole were less likely to work outside the home (Wood, 2004). Those women who did not engage in household activity or childcare were less likely to be physically active (Wood, 2004). Forty-four percent of individuals who required oral medication or insulin to treat diabetes, did not engage in any leisure time physical activity (Wood, 2004). Boekner et. al. found that a convenience sample of 75 Hispanic women were meeting the recommended amount (150 min/wk) of physical activity at 372 min/wk (i788 standard deviation) (Boeckner et al., 2006). Community based interventions aimed at Hispanics have demonstrated a significant increase in 21 moderate to vigorous walking among participants (Staten et al., 2005). These participants of a 12-week program who had an 87% completion rate, showed that the average minutes per week at the beginning of the program, fast walking time increased significantly increased (p=0.002) from 77.5 (3204.5 standard deviation) to 108.9 (1160) minutes per week (Staten et al., 2005). Moderate walking also significantly increased (p<0.001) from 73.7 (i204.5) to 138.1 (1145.4) minutes per week (Staten et al., 2005). Results from the Diabetes Control and Complications Trial (DCCT) demonstrated that a reduction of at least 7% body weight through a healthy diet and physical activity of moderate intensity of 150 minutes/week reduced the incidence of type 2 diabetes by 58% compared to the placebo group (Ahern, 1993). Therefore, physical activity is an important adjunct to disease treatment and management. 2.4.2.1.2 Eating Behaviors The American Diabetes Association (ADA) proposed nutrition and medical nutrition therapy interventions for diabetes in 2006 based on primary and secondary prevention to prevent complications, and tertiary prevention to prevent morbidity and mortality (Bantle et al., 2006). For persons with type 2 diabetes, medical nutrition therapy and eating behaviors are clearly important integral to diabetes management from a secondary perspective, Table 2.2. As outlined by ADA, the overall recommendations are summarized in Table 2.3 (For complete recommendations see Appendix A). 22 Table 2.2 Major nutrition recommendations and interventions-secondary prevention (ADA, 2006). List of Nutrition Recommendations A dietary pattern that includes carbohydrate from fruits, vegetables, whole grains, legumes and low fat milk is encouraged for good health The cardiovascular risk of individuals is considered to be equivalent to that of a non-diabetic individual with pre-existing CVD. Therefore, in individuals with diabetes, limit saturated fat to < 7% of total calories. For individuals with diabetes and normal renal function, there is sufficient evidence to suggest that usual protein intake (15-20% of energy) should be modified. If adults with diabetes choose to use alcohol, daily intake should be limited to a moderate amount (one drink per day or less for women and two drinks per day or less for men.) There is no clear evidence of benefit from vitamin or mineral supplementation in people with diabetes (compared with the general population) who do not have underlying deficiencies. Individuals with type 2 diabetes are encouraged to implement lifestyle modifications that reduce intakes of energy, saturated and trans fatty acids, cholesterol, and sodium and to increase plysical activity in an effort to improve glycemia, dyslipidemia, and blood pressure. Table 2.3 Summary of Nutrition Recommendations 2006, American Diabetes Association. Nutrient Recommendation Amount & type of 130g/day, low-carbohydrate diets, restricting total carbohydrates to < carbohydrate 1309/day, are not recommended in the management of diabetes Fiber 2 59 fiber/serving, or ~509 fiber/day Sweeteners Reduced calorie/non-nutritive sweeteners approved by FDA Dietary fat and < 7% total calories from saturated fats Cholesterol < 200 mg/day dietary cholesterol i 2 servings of fish per week Protein 15-20% of total energy Alcohol 1 or 2 per day daily intake, less for women Specific for type 2 Reduce intakes of: diabetes Energy Saturated and trans fatty acids Cholesterol Sodium Increase physical activity 23 Key eating behaviors for US adults overall and in the Hispanic population, with or without diabetes, relate to intakes of fat, fruits and vegetables and to total calories. Among 1,480 adults with a self-reported diagnosis of type 2 diabetes in the Third National Health and Nutrition Examination Survey (NHANES III), 82% reported that 30-40% of daily calories came from fat and 26% reported that more than 40% of daily calories came from fat compared to a recommended intake of <30% of daily calories from fat (Nelson et al., 2002). The American Diabetes Association recommends <7% total calories from saturated fats and <200 mg/day dietary cholesterol for persons with type 2 diabetes. These recommendations are based on previous research that found that the cardiovascular risk of individuals with type 2 diabetes was considered to be equal to that of an individual who did not have diabetes but did have pre-existing cardiovascular disease (Bantle et al., 2006). In the same sample from the NHANES III survey, 62% of individuals ate less than 5 servings of fruits and vegetables per day and 61% reported consuming more than 10% of daily calories from saturated fats (Nelson et al., 2002). Higher consumption of fruits and vegetables and diets lower in fat were more common among individuals who were over 65 years of age and Mexican Americans (Nelson et al., 2002). In a community based prevention program targeted at Hispanic adults, they were able to significantly increase (p<0.001) the amounts of fruits and vegetables consumed per week from 14.2 ($9.7 standard deviation) to 19.6 ($11.8) for both fruits and vegetables (Staten et al., 2005). According to the American Diabetes Association, recommended amounts of 24 carbohydrates (1309/day) should come from fruits, vegetables, whole grains, legumes and low fat milk (Bantle et al., 2006). 2.4.2.1.3 Weight Control The increased risk for Type 2 diabetes is attributable to obesity by as much as 75% (Manson et al., 1994). Excess body fat is the most notable modifiable risk factor for the development of type 2 diabetes (Edelstein et al., 1997). Weight loss is believed to improve glycemic control by decreasing insulin requirements and increasing insulin sensitivity, thereby decreasing overall morbidity and mortality (Hansen, 1988; Norris et al., 2005; Wing, 1995; Wing et al., 1987). The benefit of weight loss in adults with type 2 diabetes has been demonstrated even when weight loss is modest (Wing, 1995; Wing et al., 1987). Given the strong link between energy balance (food intake versus energy expenditures via physical activity), obesity and other chronic diseases, the American Diabetes Association recommended that individuals with type 2 diabetes who are overweight (BMI 225 kg/mz) or obese (BMI _>_30 kg/mz) should be participating in regular physical activity or other lifestyle changes to achieve this objective (Bantle et al., 2006). Effective approaches to weight loss or maintenance should be considered for each individual patient's needs and other conditions that may facilitate or hinder their ability to achieve their goals for weight loss or maintenance. 2.4.2.1.4 Medication Adherence Chronic diseases such as diabetes mellitus in conjunction with others such as hypertension, coronary heart disease and arthritis require multiple medication regimens. Patients may inadvertently forget to take medication or 25 medication contrary to that prescribed. Some factors that influence adherence are comprehension of treatment regimen, perception of benefits, side effects, medication costs and regimen complexity (Rubin, 2005). In a multinational survey of patients with type 2 diabetes an their physicians, 57% of physicians responded either "always" or "often" when asked how often they told patients they will have to start insulin if they do not follow medical advice (Geelhoed- Duijvestijn PHLM, 2003). Patients surveyed had negative attitudes towards beginning an insulin therapy because they associated the insulin therapy with failure to comply with medical advice from their physician (Peyrot, 2003). In a study by Peyrot et al. (2003), researchers found that almost 70% of physicians reported that stress and depression was affecting the type 2 diabetes patient's ability to adhere to treatment and recommendations. Depression associated with diabetes-related emotional distress requires treatment because of the impact on treatment adherence and glycemic control outcome (Rubin, 2005). Treatment of depression or stress has been associated with improved metabolic outcomes (Lustman et al., 2000; Lustman et al., 1997; Lustman et al., 1998). 2.4.2.1.5 Self-monitoring Blood Glucose One self-management behavior that has been shown to improve glycemic control in individuals with type 2 diabetes is self-monitoring blood glucose (Rubin et al., 1989). Self-monitoring blood glucose involves a finger prick blood test measures the glucose levels in the blood so that the patient has a way of monitoring their blood glucose daily. A study that looked at GHB and compared those subjects who were performing self-monitoring blood glucose to those who 26 were not showed a better GHB level for those who did monitor their blood glucose (Holmes et al., 2002). Another study looked at various self-care behaviors including self-monitoring blood glucose. The researchers found that frequency of self-monitoring blood glucose and corresponded to a decrease in GHB (Rost et al., 1990). Self-monitoring blood glucose has been established as a diabetes self-management behavior that is positively associated with glycemic control (Holmes et al., 2002; Rost et al., 1990; Rubin et al., 1989). In a sample from NHANES-Ill, researchers found that persons of Hispanic ethnicity and had a language barrier were less likely to practice self-monitoring blood glucose at home and it was less common among Mexican-Americans (Harris, 2001; Harris et al., 1999). One diabetes education program, Translating Research into Action for Diabetes (TRIAD), created for Spanish speaking Hispanic persons reported that Hispanic individuals were less likely to perform self-monitoring blood glucose tests (36.8%) compared to non-Hispanic whites (49.1%) (Brown et al., 2003). 2.4.2.1.6 Medical Monitoring Medical monitoring is an important factor that persons who live with type 2 diabetes should try to follow. American Diabetes Association recommends that persons with type 2 diabetes visit with an ophthalmologist for retinopathy screening once per year and visit a physician regularly for professional monitoring of disease progress and make changes as needed (ADA, 2006) 2.4.2.2 Diabetes Self-management Strategies Many self-management strategies might not be appropriate for the most common causes of the symptoms. There appears to be a focus on alleviating 27 discomfort associated with symptoms without dealing with the cause of the symptom (Garcia, 2005). In previous studies, people with diabetes identified the same symptoms with both hyper and hypoglycemia and people with diabetes may feel symptoms of hypoglycemia when their blood sugar is still abnormally high because of a physiologic adaptation to high levels of circulating glucose and a higher sensitivity to decreases in level of blood glucose (Brown et al., 1998). Cultural considerations may be associated with individuals with diabetes ignoring discomforts or other sensations that distract from family and work obligations, and hence symptom prevention and treatment among Mexican Americans with type 2 diabetes (Garcia, 2005). "Tomando Control de Salud,” a Spanish version of a community based chronic disease self-management program was beneficial in improving health behaviors and health status along the Texas/New Mexico Border (Lorig et al., 2005). In this study 445 persons with chronic illness (two thirds with diabetes) in Texas, New Mexico, and Mexico participated in a 6 week diabetes education program. Spanish speakers increased their use of physicians while decreasing hospitalizations, suggesting that they learned how to use health care more appropriately. Changes in self-efficacy in the early months after taking the courses, as well as initial self-efficacy before taking the courses were clearly associated with improved health behaviors and health status for 1 year. Both baseline self-efficacy and changes in self-efficacy were robust predictors of later outcomes. Self efficacy went from 6.17 and increased 1.17 points from a scale of 1 to 10 (p <.0001). This study and others suggest that teaching self-efficacy 28 might be key in successful self-management education outcomes of diabetes self-management programs targeted toward Hispanics (Lorig et al., 2005; Sousa et al., 2004). 2.4.2.3 Measuring Self-Management Behaviors Measuring the effectiveness of diabetes self-management is a difficult task because it involves data collection, and it becomes increasingly complex when trying to compare programs that do not have conformity in the data that is collected. According to the National Diabetes Education Outcomes System, data should be collected at the individual and program levels and then compiled to create a national database of information (Peeples et al., 2001 ). The American Association of Diabetes Educators states that the key outcome measure for education on diabetes self-management is behavior change, and it is recommended that diabetes educators should collect immediate, intermediate and long-term outcomes to monitor the impact of diabetes self-management education (Peeples et al., 2001). When implementing and evaluating programs aimed at effecting behavior change, especially programs that are theory driven, it is recommended to collect data not only on participants, but also on recruitment and retention efforts (Helitzer et al., 2006). Based on a review of the literature, there is currently no standardized set of data to determine the success of diabetes control at the individual level that includes both behavior change and glucose control. The best parameter available is HbA1c (GHB) because it gives us an overall picture of an individual’s glycemic control over the previous 4 months. It has been suggested that it is necessary to incorporate questionnaires, surveys or in-depth interviews to identify specific self-management 29 recommendations that are not being followed and what barriers need to be addressed in order to achieve the recommendations (Helitzer et al, 2006). The Diabetes Self Management Training Program provided diabetes education, a glucometer, an individual dietitian consult and monthly support for 70 people with type 2 diabetes in a community clinic in Texas. The results of this program showed an overall 15% decrease in HbA1c, maintenance of medication use or decrease of it, and maintenance of weight, despite the use of medication known to increase weight by some participants (Banister et al., 2004). 2.4.2.4 Barriers and Facilitators to Diabetes Self management Diabetes self-management can be impacted by a variety of factors in addition to self-management education strategies. Among others environmental factors, socio-economic status, disability, medical insurance and access to health care, and social support warrant special consideration. 2.4.2.4.1 Environmental Factors Characteristics of communities or neighborhoods (availability of health services, infrastructure deprivation, prevailing attitudes toward health, levels of stress and social support and environmental conditions) may influence general health outcomes (Brown et al., 2004). The socioeconomic position of a community as a whole can determine what kind of education, employment, income opportunities and social environments (crime rate, social capital, social isolation) individuals are susceptible to (Brown et al., 2004). Research has shown that environmental factors are a significant barrier to self-management of diabetes and often influences self-management resulting in suboptimal 30 adherence to recommendations (Vincze et al., 2004). Among low income persons, the costs of managing diabetes can include medications for diabetes and non—diabetes related conditions, physician fees, self-monitoring supplies, transportation to medical care facility and prioritizing necessities such as food and school supplies for children. If diabetes continues to be poorly controlled, all these costs can add up and impose financial challenges for low income individuals. 2.4.2.4.2 Socioeconomic Status Financial security has been shown to be an integral component of the path that leads to good glycemic control for this population (Martorell, 2005). Among the low income population with diabetes, the costs associated with having the disease are increasingly placing challenges in controlling their disease. One study of older adults with diabetes reported that 19% of respondents cut back on overall medication use due to cost, 11% cut back on diabetes medications, specifically over the past year and 28% decreased their spending on food or other essentials to pay medication costs (Piette et al., 2004). Priorities and other financial burdens may interfere with perceived ability to effectively do what is needed. In addition, cost of diabetes may be exacerbated if complications and associated disabilities also exist. One study published in 2003 showed the average hospital costs for acute patients who had diagnosed type 2 diabetes were: acute myocardial infarction $17,376, angina $5,739, ischemic stroke $9,071, transient ischemic attacks $4,837, first lower extremity amputation 31 $17,555, second lower extremity amputation $17,813 and foot ulcers $8,327 (O'Brien et al., 2003). Sociodemographic factors are important to consider because they might relate to achieving treatment and management goals, via limited financial and time resources, as well as, health care knowledge. Availability of health insurance, food security, cheap sources of fatty food and refined sugars, eating away from home, sedentary behavior and white-collar jobs have all been associated with the prevalence of obesity and diabetes (Martorell, 2005). Financial security has been shown to be an integral component of the path that leads to good glycemic control for this population (Martorell, 2005). 2.4.2.4.3 Disability in Low-income Adults One barrier for practicing self-management recommendations of type 2 diabetes is disability, but there is limited research on disability as it related to with self-management practices for type 2 diabetes in adults. If not recognized early or if poorly managed, diabetes can result in complications which in turn can lead to physical disability. In addition, obesity itself is an associative condition in type 2 diabetes that might also increase morbidity. This is important because of the fact that self-management might be a challenge it support to implement these necessary behaviors is limited. Most of the research on type 2 diabetes and disability has been is done with the older adult population and was usually associated with development of co-morbidities of type 2 diabetes as a result of disease progression (Gregg et al., 2002; Stuck et al., 1999; Volpato et al., 2003). 32 One longitudinal study looked at 1,294 adults with type 2 diabetes over an average period of 4 years and conducted a clinical assessment and assessment of depression, mobility and activities of daily living (Bruce et al., 2005). Researchers found that both mobility and decreased ability to perform activities for daily living were caused by diabetes complications and comorbidities (Bruce et al., 2005). They also found that those patients who develop mobility impairment were more likely to have peripheral neuropathy and history of stroke or arthritis (Bruce et al., 2005). Another study looked at the health condition of persons applying for disability pensions and found that of the 200 persons who underwent a physical exam, two thirds had less than 13 years of education, 55% had worked in the service-sector, 59% never did any moderately vigorous exercise and about one in four were obese (Holtedahl, 2006). One other study conducted focus groups with African Americans and Latinos age 55 or older in Los Angeles to identify cultural and age-specific modifications to a self-care empowerment intervention. The main finding of this research was that participants identified disability consideration as an important missing content area in developing diabetes education (Sarkisian et al., 2005). Disability is one factor that contributes to unemployment as well as decreased likelihood of having medical insurance. Data on the relationship between disability, income, obesity and related diseases and availability of health care among adults age 55 and younger is limited. 33 2.4.2.4.4 Medical Insurance and Access to Health Care Latinos are the fastest growing minority group in the country. However, they also have the lowest rates of insurance and without access to proper health care, diabetes can progress and lead to an number of health problems (Raza, 2007). In a study aimed at evaluating the extent and types of health insurance coverage in a representative sample of US. adults with diabetes, it was found that Mexican-Americans are 23% more likely to lack health insurance than whites (Harris, 1999). One of those health problems commonly found in persons who have complicated or poorly controlled diabetes is retinopathy. One of they key recommendations from ADA to detect signs of retinopathy caused by diabetes is receiving an annual dilated eye exam (ADA, 2006). If an individual with diabetes does not have access to health care, they are three times less likely to have a dilated eye exam (Beckles et al., 1998). In a study that provided a framework for how socioeconomic status relates to health status of individuals with diabetes, it was found that those who were uninsured were less likely to have afoot examination. Hence, they were more likely to have poor glycemic control and have almost seven times the odds of having diabetes related complications such as retinopathy (Brown et al., 2004). In Hispanic Health and Nutrition Examination Survey (HHANES) findings from 1982-84, Cuban Americans, among Hispanics, were more likely to have private insurance or availability of health insurance in the form of employee benefits versus Mexican Americans (Solis et al., 1990). Puerto Rican Americans were also more likely to be covered by Medicaid than Mexican Americans, but 34 they also had more female headed households eligible for Medicaid under Aid to Families with Dependent Children (Solis et al., 1990). One study in New York state was done to assess the status of diabetes medical care and self- management among adult Puerto Ricans in New York City. Researchers conducted a random-digit-dialing telephone survey to obtain a probability sample of adult Puerto Ricans with diagnosed diabetes (n = 606). They collected demographic characteristics, health status, and indicators of diabetes medical care and self-management based on the standard Behavioral Risk Factor Surveillance System (BRFSS) questionnaire. In this study, researchers found this population was not disadvantaged in terms of access to health care. There was no difference between the Puerto Rican sample when compared to the state wide sample (63.9% vs. 64.5%) in visiting a health care provider as recommended by ADA of at least four times per year (Hosler et al., 2005). Puerto Ricans were more likely to have heath insurance and a regular place for care than other Hispanics (Hosler et al., 2005). Therefore it seems that within the Hispanic population, some sub-groups might be experiencing more challenges with respect to health care. The ability to speak English was one barrier consistently identified throughout the literature as a determinant to whether Hispanics effectively obtained health care access (Lara et al., 2005; Lorig et al., 2005; Malentacchi et al., 2004; Solis et al., 1990). Location of residence could also be an explanation. Both of these factors are integrally linked to level of acculturation. 35 2.4.2.4.5 Social Support Social support has been found to be a relevant factor in diabetes self- management (Garvin et al., 2004; Gleeson-Kreig et al., 2002; Spencer et al., 2006). One cross-sectional study specifically looked at 95 insulin-requiring Hispanic adults to explore who was in their support network, the type of assistance needed, and the relationship between social support and diabetes self-management. The results of this study showed that with regard to the social support in diabetes self management of this sample, 94% of participants stated they would expect family members to be available to help in at least one of the surveyed areas: shopping, buying medication, going to the doctor, calling diabetes clinic, house work, preparation of diabetes diet, self care behaviors, going to get blood work or urine tests, injecting own insulin, help because of illness, advice when not feeling well, personal care, and money to cover diabetes expenses (Gleeson-Kreig et al., 2002). Children were also the primary source to rely on for any help with diabetes related self-management (Gleeson-Kreig et al., 2002). In a different study, a convenient sample of 141 insulin-requiring individuals with diabetes, researchers found that diabetes self-management was significantly correlated with social support (p < .01 ), self-care agency3 (p < .01), and self-efficacy (p < .01) (Sousa et al., 2004).Given the undoubted value for family in general. And the greater likelihood of reliance on family and or community support in the Hispanic people overall, it is not surprising that social support is also an important aspect of diabetes management, and should not be omitted as part of health care (Fisher et al., 2005). 3 An individual's capacity to perform self-care actions. 36 2.5 Theoretical Foundation for Self-management Behaviors Two theoretical frameworks were found to be appropriate to guide this study: the Social Ecological Theory adapted for diabetes self-management (Fisher et al., 2005) and the Enhanced Behavior Performance model for diabetes self-management, derived from the self-efficacy theory (Sousa et al., 2004). The integrated model is presented in Figure 2.3 and it includes acculturation under the individual factors. 2.5.1 Ecological Approaches to Self-management The ecological perspective for self-management integrates the skills and choices of individuals first with the services and support they receive from family, friends, worksites, organizations and cultures and secondly with the physical and policy environments of neighborhoods, communities and governments Figure 2.1 (Fisher et al., 2005). 37 Access to resources in daily life Community and Policy Continuity of quality clinical care System, group, culture Follow-up and support , , Enhancing skills Family, Friends, small groups Collaborative goal setting Individual, Individualized biological, assessment psychological Figure 2.1 Social Ecological Theory: Correspondence of Ecological Levels of Influence with Resources and Supports for Self-management (Fisher et al., 2005). There are many factors that contribute to an individual’s behavior, which either support or detract from the likelihood of behavior change for diabetes self- management. The ecological perspective shows that without access to convenient sources of healthy foods and safe and attractive settings for exercise in the built environment, an individual is less likely to make these modifications to their lifestyle change (Fisher et al., 2005). In this model, Fisher et. al. identified six key resources and supports for self-management (RSSM) from an individual needs perspective: individualized assessment, collaborative goal setting, skills enhancement, follow-up and support, access to resources, and continuity of quality clinical care. They reflect 38 on diabetes self management in the context of how the social environment influences disease progression (Fisher et al., 2005). Because self-management of diabetes has many influences, this model helps to identify factors that affect the interventions aimed at these individuals. Further, the ecological model shows the importance of interventions that are directed at changing interpersonal, organizational, community, and public policy which relate to supporting or decreasing the likelihood of behavior change. This model assumes that changes in the social environment may stimulate changes in individuals and that support of these individuals is then important for implementing and sustaining environmental changes (McLeroy et al., 1988). 2.5.2 Enhanced Behavior Performance Model The enhanced behavior performance model for diabetes self-care management includes personal and environmental factors and self care behaviors. In this model, personal factors include diabetes knowledge, self-care agency, self-efficacy, environmental factors include social support, and diabetes self-care management represents the behaviors/self-care action, Figure 2.2 (Sousa et al., 2004). 39 Diabetes Knowledge I Self-efficacy \ Self-care Agency a I variables Social Support / Figure 2.2 Research Model for Diabetes Self-care Management (Adapted Self- efficacy & Enhanced-behavior Performance Model) (Sousa et al., 2004). Diabetes self-care management This model demonstrated that individuals, who had greater knowledge of diabetes, had greater self-care agency and self-efficacy, which together contribute to better diabetes self-care management. Social support from family and friends also increase self-care capabilities and improved diabetes self-care management (Sousa et al., 2004). Social support and self-efficacy influenced practice of self-care behaviors and thus increase in self-management of diabetes (Sousa et al., 2004). Figure 2.3 is the integration of both the human ecology theory and the self-efficacy theories as modified for self-management of diabetes. Both models show that environmental factors, social support and self-care behaviors affect an individual’s ability to achieve desired glycemic outcomes, which is the goal of 40 diabetes self-management. Figure 2.3 includes acculturation in the conceptual map used for this study. Acculturation is an individual factor influenced by both the individual and environment which impact diabetes self-management practices and glycemic control. Findings from this review of the literature support this integrated model as one that addresses issues supported by previous research and thus is appropriate on which to base this study. 41 C) O Envlrgnmental factors Socioeconomic status I" M 8!? Medical insurance Acculturation . Access to health care Years Of Schooling Social Support Duration of Diabetes Diabetes Knowledge \ thgvlor/Llfgmk Faggrg Self—management: Diet Exercise Medications Home diabetes status monitoring Visiting with doctor once per year Visiting with ophthalmologist once per year \ / Health gng Well Being Perceived Benefits GLYCEMIC CONTROL: Acceptable <8% HbAIC Unacceptable 38% HbA1c Figure 2.3 Integrated Social Ecological Model and Adapted Self-efficacy & Enhanced-behavior Performance Model for Diabetes Self-Management (Fisher et al., 2005; Sousa et al., 2004). 42 CHAPTER 3 METHODS 3.1 Design This was a cross-sectional qualitative study in which a convenience sample of adult Hispanic patients with physician diagnosed Type 2 diabetes were selected to participate in an in-depth interview regarding acculturation and life style factors related to self-management of diabetes. Both qualitative and quantitative methods were used to describe factors associated with self- management practices and glycemic control in the sample. 3.2 Site A community-based clinic in Lansing, MI (Cristo Rey Clinic), which primarily serves low-income persons was selected for this study. The clinic has a high attendance by diverse group of low-income Hispanic people, but is not limited to people of Mexican, Spanish, Puerto Rican and Cuban descent. The clinic accepts Medicare and Medicaid and permits a sliding fee scale for persons without insurance. Clinic administrators were supportive of this research, and as required, informed consent was obtained (Appendix B). 3.3 Participants A convenience sample of approximately 14 adults with acceptable (HBA1c <8%) and 16 with unacceptable (HbA1c 28%) glycemic control participated in this study. Eligibility criteria were adults over 18 years of age who were of Hispanic ethnicity, physician diagnosed with Type 2 diabetes, had attended the 43 clinic for at least one year and had complete biomedical data in medical records, as well as availability for at least one year. This ensured that data were available and patient follow-up was possible when necessary. Participants who completed the assessment received a $25 gift certificate as an incentive. 3.4 Procedures Prior to study commencement, meetings with the physician and staff on site were conducted to determine feasibility. Institutional Review Board (IRB) approval was obtained from Michigan State University’s Committee for Research Involving Human Subjects (UCRIHS) after the clinic director approval was obtained (Appendix C). At the Cristo Rey Clinic, patients typically come in to see the physician with or without an appointment for about 30 minutes, making recruitment of participants possible in two ways. The doctor and clinic staff referred potential participants, and participants were also recruited via clinic and UCRIHS approved flyers posted at the clinic (Appendix D). The investigator approached potential participants, obtained signed consent (Appendix B), scheduled an interview date and time or conducted the interview immediately. The interview was conducted in a designated consulting room within the clinic. There were four steps of data collection for each subject (See Table 3.1). First a preliminary chart review served to determine patient eligibility criteria. When laboratory data were missing, the physician requested the patient to permit clinic staff to complete the laboratory tests missing. 44 Table 3.1 Comprehensive study sequence for obtaining qualitative and quantitative data. Number Step Data Collected l UCRIHS and Clinic Approval ll Participant recruitment 1 Eligibility a. Hispanic descent b. Age >18 years c. Physician-diagnosed with type 2 diabetes (1. Completeness of biochemical data e. Records available for one or more years 2 Interview — in-depth interview, acculturation assessment, 24- Interview guide hr dietary recall, socio- Acculturation level via modified version of demographic information ARSMA 24-hour dietary recall Socio-demographic instrument Signed consent 99'!” we 3 Chart Review 9’ In-depth chart review to determine: Glycemic control Duration of diabetes Use of other medications prescribed to treat diabetes or associated diseases/ comorbidities Weight and height 4 2"6 Day 24-hour dietary recall 2nd 24-hour dietary recall by phone or in person Incentive administration The second step was the scheduled in-depth interview (Appendix E) of directed questions regarding diabetes self-management and acculturation (modified ARSMA-ll), a 24-hour dietary recall and short diet history. At this time, the interviewer also elicited responses to a questionnaire on socioeconomic status, years of schooling, availability of medical insurance, access to health care, whether the participant monitored blood glucose at home, took medications as prescribed, followed a recommended diet, was trying to lose or maintain weight, visited an ophthalmologist and visited their doctor at least once per year (Appendix E). 45 The third step in the assessment was an in-depth medical chart review to determine biomedical markers of diabetes control (HbAIC and lipid profile) (Appendix F), diabetes progress, presence of diabetes complications and agreement between interview and medical records. The chart review followed the in-depth interview or was done after missing laboratory data were obtained. The investigator obtained two 24-hour dietary recalls following standardized procedures and using food models for portion sizes (Conway et al., 2004; Conway et al., 2003; Jonnalagadda et al., 2000). The first recall was collected at the end of the in-depth interview and the second dietary recall (fourth step) was collected by phone or by office visit on a scheduled date and time. Typically, the second diet recall was collected within one week of first. These were used to assess cultural food choices. The participant received compensation (a gift certificate for a local grocery store) when the following parts of the study were completed: 1) Signed consent forms, 2) ln-depth interview, 3) Both first and second diet recall, and 4) Complete medical chart data. 3.5 Instruments The in-depth interview guide in Appendix E was developed based on research objectives and questions with corresponding interview questions. Table 3.2 lists the research objectives, research questions and corresponding interview questions. The investigator pilot tested the interview guide to help establish face validity with five Hispanic adults, two of whom were over 72 years of age; three were male and two were female. The ability of the instrument to elicit valid responses was checked by interviewing the spouses of the three men. 46 Results of this pilot testing for validity led to revisions of the guide towards use of simpler language and the addition of probes. Table 3.2 Research objectives, research questions and corresponding interview quesfions. Research Objectives Research Interview Questions Questions 1) To describe and contrast 1. How do 20) Describe how having diabetes has self-management behaviors in subjects changed your life. What do you do Hispanic adults with physician perceive the differently now? Prompt: after being diagnosed type 2 diabetes and impact of the diagnosed with diabetes? How has your who are either in acceptable disease and daily routine changed? (HbA1c < 8) or unacceptable required self- glycemic control (HbA1c 2 8). management 23) Describe some of the things you do well behaviors? about managing diabetes and why? Prompt: Which of these do you do best? 24) Describe some things that you don’t do well. Prompt: What makes it difficult for you to do this well? 25) What if any, are the advantages to managing your diabetes? Why? 1. How do 27) What do you do on a daily basis to take subjects care of yourself or your diabetes? Prompt: perceive the exercise, medical care, diabetes education impact of the school? What do you think is the best way disease and for you to take care of yourself? required self- management 28) What would you like to do to be behaviors? healthy? 29) What helps you in taking care of yourself? Prompt: What are some things that helped you manage your diabetes? 30) Are there any specific foods or other things that you believe help you with your diabetes? Prompt: What are they? Tell me how they/it helps you? 47 Table 3.2 Research objectives, research questions and corresponding interview questions. (Cont'd) Research Objectives Research Interview Questions Questlons 1) To describe and contrast 2. How does 14) Describe the community that you live self-management behaviors in location of in? Prompt: Is it safe, tranquil, dangerous? Hispanic adults with physician residence diagnosed type 2 diabetes and influence 15) How does where you live affect how who are either in acceptable diabetes self- you can care of managing your diabetes? (HbA1c < 8) or unacceptable management? QIYCGMIC COWOI (HUN 0 2 8)- 4. How does 33) What is it about where you go for health (COHt'd) health care care that you like or dislike and why? facility influence diabetes self- 34) What do you think the role of the doctor management? should be in helping you with your diabetes? 36) What organizations, groups, individuals do you get helpful information from? 2) To determine if and how 3. What is the 16) If they have relatives who had diabetes acculturation relates to self- relationship ask: How do you think having diabetes is management behaviors and between support different for you compared to your family diabetes control in Hispanic networks members with diabetes? adults with physician (family, diagnosed type 2 diabetes and institution, 17) When you first found out you had who are either in acceptable (HbA1c < 8) or unacceptable glycemic control (HbA1c 2 8). friends) and diabetes self- management? diabetes, who was the most helpful and how? 18) Describe the different responses you received when you first told your family you had diabetes? Prompt — Can you give me an example? were they supportive of it? Did they help in your diabetes management? If so, how? 19) When you need help with your diabetes, to whom do you turn to and how do they respond? Prompt — friends, family, doctor 21) How has having diabetes changed how you act with friends? 35) Where and from whom did you learn how to take care of yourself? 37) What has been the most helpful resource or thing for you? 48 Table 3.2 Research objectives, research questions and corresponding interview questions. (Cont'd) Research Objectives Research Interview Questions Questions 2) To determine if and how 5. How does 13) Can you tell me what diabetes is? acculturation relates to self- diabetes management behaviors and diabetes control in Hispanic adults with physician diagnosed type 2 diabetes and who are either in acceptable (HbA1c < 8) or unacceptable glycemic control (HbA1c 3 8). (Cont'd) knowledge of Hispanic persons influence self- management of diabetes? 6. What do Hispanic individuals with type 2 diabetes perceive to be facilitators and inhibitors for better managing their diabetes? 7. What is the relationship between acculturation and type 2 diabetes control? 22) What have you been told is important in taking care of your diabetes? Prompt: How do you feel about that? 26) What do you think the role of medicine is in managing diabetes? What do you think the role of food is in managing diabetes? Prompt: Do you think that one is more important than the other? 38) Have you taken classes on diabetes? Prompt: If no, Do you know if diabetes education is available to you? 31) What keeps you from taking care of yourself? Prompt: What are some of the difficulties in managing your diabetes? 32) What is the most difficult thing about controlling your diabetes? 1) Acculturation Rating Scale for Mexican Americans -II (5 levels) 2) Glycemic control - HbA1c value from medical chart review (two groups) 49 The acculturation scale, Acculturation Rating Scale for Mexican American - Il (ARSMA-ll), developed by Israel Cuellar was validated with a population of 222 Mexican American youth and adults (Cuellar et al., 1995). The ARSMA-ll as depicted in Figure 3.1 is a short version of 30-item Likert type scale questions, which measures acculturation along three primary factors: language, ethnic identity, and ethnic interaction. ARSMA-ll is able to generate both linear acculturation categories (Levels 1-5) and orthogonal acculturative categories (Traditional, Low Biculturals, High Biculturals, and Assimilated). Although the name implies that this instrument is used for Mexican Americans, it has been adapted for use with other Latino subgroups (Solis et al., 1990). The instrument reliability was tested on adults and seniors of Mexican origin by Cuellar et al., (1995) and divided into two sub scales: Mexican Oriented Subscale (MOS, acculturation levels 1-2) and Anglo Oriented Subscale (AOS, acculturation levels 34). The Cronbach alpha for MOS was =0.92 and for the A03 subscale, Cronbach alpha =0.87. The two subscales in ARSMA-ll measure cultural orientation to Mexican and Anglo cultures independently rather than evaluating them together which would force an individual to lean on one culture more than the other (Cuellar et al., 1995). Traditional indicates that a person scores high on the Mexican Oriented scale and low on the Anglo oriented scale; Low bicultural scores low on both scales, high bi-culturals score high on both scales and assimilated scored high on Anglo Oriented scale and low on Mexican Oriented Scale. For this research, the administration of the ARSMA-ll was modified simply by having the 50 interviewer ask the questions, rather than having it self-administered. This format would decrease concerns about participant’s literacy and reduce the likeliness of missing values. This also improves the consistency of values by having the same researcher ask questions and interpret the answers. Mexican Orientation Scale (MOS) l = High integrated bicultural II = Mexican oriented A bicultural High Ill = Low integrated bicultural Vl = Assimilated bicultural Lo H' h w '9 American Orientation Scale (AOS) I|| VI Low Figure 3.1 Acculturation Rating Scale for Mexican Americans-ll depicting Multidimensional, orthogonal, bicultural classifications. (Cuellar et al., 1995). Level of acculturation was determined from the ARMSA-ll (a subcomponent of Appendix E) and was analyzed by obtaining two scores for each subscale. The first subscale, Mexican Orientation Subscale (MOS) included questions 40, 42, 45, 46, 47 and 50 in the Interview Guide (Appendix E). The questions were answered using a five point Likert scale from 1-5 for “not at all” to “almost always/extremely often” and the mean of these items was the score for MOS. The second subscale, Anglo Orientation Subscale (A08) 51 included questions 41, 43, 44, 48, 49 and 51 in the Interview Guide (Appendix E), which were averaged for the A08 score. Once the two subscale scores were obtained, the mean A08 and mean MOS were subtracted to obtain a number that identified which subscale the participant’s acculturation was stronger. Participants were dichotomized into the MOS group, by a score 30.07 and the A08 group >-0.07. Thus a more positive score indicated Anglo orientation and a more negative score indicated Mexican orientation. In addition to the ARSMA-ll, two additional questions were asked for cultural information “What is your country of ethnic origin?” and “Do you use home remedies?” This information was used to obtain additional information that may influence self-management of diabetes in this sample that may not have been captured in the acculturation score or the in-depth questionnaire. 52 3.6 Data Analysis Glycemic control, defined as HbA1c <7%, was the dependent variable used to categorize subjects as acceptably versus unacceptably controlled groups. An attempt was made to obtain representative samples in both these groups in order to be able to gain a better understanding of how acculturation and other factors were exhibited in Hispanic adults with Type 2 diabetes, based on level of diabetes (glycemic) control. In addition, study participants were also grouped by acculturation as AOS or MOS for analysis to determine if there were differences in patterns of self-management practices based on acculturation. The explanatory variables were acculturation, age, duration of diabetes, socioeconomic status, years of schooling, duration of diabetes, medical insurance, access to health care and self-management practices. Quantitative data was used for descriptive purposes and included univariate analysis on socio-demographic factors, laboratory values and the ARSMA-ll Scale, descriptive statistics were obtained by using SPSS (13.0, Chicago, Illinois, SPSS Inc.). Dietary recalls were analyzed using Nutritionist Pro (3.1.0, Stafford, TX, Axxya Systems) and compared to the nutrition guidelines recommended by the American Diabetes Association in Table 2.3 to determine adherence to recommendations for self-management of diabetes (Bantle, 2006). The qualitative data was obtained from all the interviews, (n=30), which were tape recorded and transcribed verbatim. All transcripts were read and checked for accuracy by listening to the tapes to correct errors and increase familiarity with the data. The researcher and a trained assistant coded the 53 transcribed interviews to identify themes and sub themes. Coding was agreed upon by both individuals to confirm themes (Appendix G). Therefore, qualitative research methods were confirmed with the biomedical data and medical notes in order to strengthen our understanding of the data. Triangulation was used to relate the interview information, to biomedical data and medical notes as a means of ensuring validity. For example, the participant was asked, “How many times per year do you visit the doctor?” Their response was triangulated to the actual number of times they visited the doctor based on their medical chart review where we noted how many times in the past year they visited the doctor and the number of HbA1c laboratory results in the medical chart for the past year. Specifically, the two days of dietary intakes were evaluated for achievement of at least 1309 carbohydrates/day, 509 of fiber/day, use of artificial sweeteners, <200 m9/per day of dietary cholesterol, 15-20% total calories from energy per day and alcohol intake. In addition, the types of foods were examined for frequency of fast food consumption, and culturally based foods like tortillas and picadillo, were listed and compared by glycemic control and acculturation group. 54 CHAPTER 4 RESULTS This chapter presents the descriptive and dietary data with findings grouped according to relevance of each research objective. For the most part, quantitative data are presented first followed by qualitative data next for explanation. 4.1 Descriptive Data Thirty participants of Hispanic descent agreed to participate in this study, 13 males and 17 females, averaging 50 years of age and ranging from 32 to 72 years of age. The subjects' characteristics for each glycemic control group and acculturation group are summarized in Table 4.1. Most participants (n=23) self- identified their ethnic origin as Mexican, with 14 categorized as Mexican oriented from the acculturation scores. Those with acceptable glycemic control (n=13) vs. those with unacceptable control (n=17) appeared to be more likely to be employed and less likely to be disabled; acculturation appeared unrelated. Mexican-oriented participants were about 8 years younger than those who were Anglo oriented. Table 4.2 shows the BMI in groups cross tabulated for glycemic control and acculturation. 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E. can» 57 Table 4.2 Body Mass Index mean (:80) by acculturation and glycemic control. n=301 Mexican Oriented Anglo Oriented (n=14) (n=16) Acceptable (<8% HbA1 c) 37.6 34.0 (n=11,13) ($15.0) ($11.7) n=4-5 n=7-8 Unacceptable (38% HbA1 c) 38.1 35.5 (n=17) ($10.3) ($3.9) n=9 n=8 1Height was unattainable for 2 participants, but both were acceptably controlled. 4.2 Key Dietary Data Dietary data averaged from two 24-hour dietary recalls, showed that participants in the acceptable glycemic control group were more likely to consume 1500 or fewer calories, less than 300 grams of carbohydrate less than 30 grams of saturated fat, less that 200 mg cholesterol and less than 1009 protein per day compared to those in the unacceptable control group Table 4.3. Participants with unacceptable glycemic control and who were of Mexican orientation were the most likely to consume 2 2100 calories per day. All participants in the unacceptable control group ate greater than 300 grams of carbohydrate per day. Overall, eating breakfast was a common practice, but fiber intake was low. 58 Table 4.3 Selected nutrients and diet history items from two 24-hour diet recalls*, bLglycemic control groups and by acculturation groups. (n=30) Total Acceptable Acceptable Unacceptab Unacceptab Control, Control, le Control, le Control, MOS AOS MOS AOS (n=13) (n=17) (n=14) (n=16) How many times per week do you eat meals with your family? None 3 0 1 1 1 1-7 18 4 4 7 3 8-15 9 1 3 2 3 Breakfast per week (times/wk) 0-3 9 2 1 3 2 4-7 21 3 7 7 3 Problem digesting milk? 4 0 1 2 1 Energy, (kcal) <1500 10 4 4 1 1 1500-2100 9 1 2 1 5 >2100 11 0 2 8 1 Carbohydrate, g <200 12 3 4 2 3 200-300 11 1 3 4 3 >301 7 1 1 4 1 Saturated fat, 9 <15 8 3 2 2 1 15—30 13 2 4 3 4 >30 9 0 2 5 2 Cholesterol, mg <200 8 3 2 1 2 200-400 8 2 2 1 3 2401 14 0 4 8 2 Dietary fiber, 9 <25 24 4 7 7 6 225 6 1 1 3 1 59 Table 4.3 (Cont’d) Total Acceptable Acceptable Unaccepta Unaccepta Control, Control, ble ble Control, Control, MOS AOS MOS AOS Protein, 9 <50 7 2 3 1 1 50-100 15 3 4 4 4 >100 8 o 1 5 2 Two of the 30 participants had only one day of dietary intake due to incorrect phone numbers. MOS =Mexican Oriented Subgroup based on value of difference between Mexican oriented subscale and Anglo oriented subscale of g -0.07 on the ARSMA-ll scale. AOS =Anglo Oriented Subgroup based on value of difference between Mexican oriented subscale and Anglo oriented subscale of > -0.07 on the ARSMA-II scale. Some differences in types of foods consumed were observed when participants were categorized by glycemic control and acculturation (Table 4.5). Those with acceptable glycemic control and Mexican oriented were those most likely to report eating salads. Participants in the acceptable glycemic control and who were Anglo oriented reported the most fruit. Participants with unacceptable glycemic control reported the most frequent intake of both fast foods and cultural foods. 6O Table 4.4 Frequency of types of food reported by glycemic control and acculturatioquroups from two days of dietary intake. Acceptable Glycemic Unacceptable Glycemic Control Control Mexican Oriented (n=5) (n=9) Subgroup Salads (4) Tortillas (8) Water (5) Fast Food (4) Milk (4) Picadillo (2) Coffee (2) Tacos (2) Sandwich (2) Barbacoa (1) Menudo (1) Anglo Oriented Subgroup (n=8) (n=8) Fruits: Sausage (5) Apple (6) Tortillas (8) Grapes (2) Spanish Rice (2) Watermelon (2) Tacos (1) Strawberries (2) Menudo (1) Banana (1) Mole (1) Mango (1) Bur'ielos (1) Blueberry (1) Fast food (1 ) Pineapple (1) Pork chops (1) Acceptable Glycemic Control=(<8% HbA1c) Unacceptable Glycemic Control=(28% HbAfc) MOS=Mexican Oriented Subgroup based on value of difference between Mexican oriented subscale and Anglo oriented subscale of 5 -0.07 on the ARSMA-ll scale. AOS=AngIo Oriented Subgroup based on value of difference between Mexican oriented subscale and Anglo oriented subscale of > -0.07 on the ARSMA-ll scale. 4.3 Facilitators and Barriers, Descriptive Data Facilitators and barriers to glycemic control were organized according to the individual, environmental and behavior/lifestyle factors from Figure 4.1 for each of the four subgroups (Table 4.5). Some responses fit into more than one factor demonstrating the complexity of disease management and the interactions between the individual, environment and self-care behaviors necessary to achieve glycemic control. Those with acceptable glycemic control made more frequent comments reflecting recognition of diabetes and the disease progression more frequently than those with unacceptable glycemic control. A 61 striking finding was the frequency with which all subgroups associated following diet recommendations for diabetes as a facilitator more times than associating it as a barrier. 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Visit doctor 1x/yr Understands Exercusmg Visit ophthalmologist 1x/yr Complications of DM2 Safety \7/ Health and Well Being Perceived Benefits GLYCEMIC CONTROL: Acceptable <8% HbA1 c Unacceptable 2 8% HbA1c Figure 4.1. Integrated Social Ecological Model and Diabetes Self-Management with Barriers and Facilitators (Fisher et al., 2005; Sousa et al., 2004) HbA1C= Hemoglobin A1 0 where glycemic control is value <8% HbA1c; DM2= diabetes mellitus, type 2. 65 4.3.1 Individual Factors Participants with acceptable glycemic control were most likely to always follow the dietary recommendations (Table 4.6). Those who were Anglo oriented in their acculturation report slightly higher frequency of exercise compared to those with MOS orientation. Table 4.6 Frequency of diabetes self management behaviors by glycemic control and acculturation subgoups. Total Acceptable Acceptable Unaccepta Unaccepta Control, Control, ble ble MOS AOS Control, Control, MOS AOS (n=30) (n=5) (n=8) (n=9) (n=8) Follows a diet Always 12 3 4 3 2 Sometimes 8 0 3 4 1 Never 10 2 1 3 4 Exercises, yes 26 1 6 9 6 Min exercise S15 4 o 1 2 1 30-59 12 2 4 3 3 260 14 3 3 5 3 Times / wk exercise 0-2 5 1 2 1 1 3-5 16 4 2 8 2 6-7 9 0 4 1 4 Checks blood sugar at home 22 3 7 7 5 66 Table 4.7 Frequency of individual factors related to diabetes by glycemic control and acculturation status. Acceptable Acceptable Unaccepta Unaccepta Total Control, Control, ble Control, ble Control, MOS AOS MOS AOS (n=30) (n=5) (n=8) (n=8) 40:8) Years since DM diagnosis 52 4 0 3 0 1 3-5 10 1 4 2 3 6211 16 4 1 8 3 Years schooling 0-9 15 4 4 4 3 10-12+ 15 1 4 6 4 Country of education US 20 2 4 8 6 Other 9 3 3 2 1 Consecutive yr in US 515 6 2 3 1 0 15-30 4 1 O 2 1 >30 20 2 5 7 6 No class on DM 22 4 8 4 6 No knowledge of 18 3 5 5 5 available DM classes HbA1c=Hemoglobin A1c where glycemic control value is, 8% HbA1c DM=diabetes mellitus Participants with unacceptable glycemic control appeared to have had diabetes the longest, be the most likely to be educated in the US, have the most schooling and lived in the US the longest (Table 4.7). Overall the educational level was low, with only one person having post high school education (data not shown). Those in the Mexican oriented group were most likely to have diabetes 67 for 6 or more years. Those who were Anglo oriented were most likely to have not had a BM class, although most participants had taken no classes on diabetes and were not aware of classes available. The most common response reflected that participants overall did not know what diabetes was. “Well no, well l have no idea, I know it’s diabetes, but I don’t even know what it is.” [Female, AC, MOS] Symptoms or complications related to diabetes emerged when participants were unable to describe diabetes. Most all could not articulate a clear understanding of the disease, but rather related diabetes to the symptoms or complications such as having to do with ‘the blood’, can “lead to death” and causing “pain in the body.” “It’s what it is; a blood disease it is. I know it’s in the pancreas, something to do with the pancreas.” [Female, UC, AOS] Others considered the disease outcome or complications when diabetes remained uncontrolled. “Diabetes is an illness that is there, and that if I don’t take care of myself, I’ll die. I know that I am conscious that diabetes is dangerous, whether it’s the [type] one or [type] two. There’s one that’s more difficult, right? But any diabetes if you don’t take care of yourself, it has consequences.” [Female, UC, AOS] “It’s a difficult disease, above all psychological I feel. It affects one emotionally more than anything. Well to me, it affects me more in that sense. Yes, because I never got sick when l was, when I didn’t have diabetes. I didn’t get sick and now normally anything and one gets sick, cold, anything. Really if one goes anywhere and there’s a cold, right away it one gets it. Well I get it very easily. That disease, yeah, that is it.” [Female, UC, MOS] “Diabetes, it’s really bad, bad disease I have. It just sucks the life out of you. It’s real bad. It hurts, makes your whole body hurt. It’s terrible.” [Male, AC, A08] 68 4.3.2 Behavior When asked to, “Describe how having diabetes has changed your life,” responses corresponded to diabetes self-management recommendations and to the difficulty of daily performance. “Hmm, ldon’t eat a lot of stuff, junk food. ldon’t eat as much as I used to eat. I’m learning to eat in portions and stuff. But sometimes it’s frustrating, because, before I didn’t know what I could eat and what I couldn’t eat. Now they’re telling me it’s not what you eat, it’s how much you eat.” [Female, UC, MOS] “Well first I gotta poke my finger to make sure what it is. Then I gotta control it you know like if it’s going down or normal, ljust shoot so much. I try to, I’m going like, okay, I’m low, so I’ll eat a piece of candy, but not as much, because I don’t want to get it sky high. I just give it a couple of bites and see how I feel. If I start feeling like, blurry, my vision gets blurry and stuff, then I know I went too much. So then I gotta go look for my insulin.” [Male, UC, AOS] Beliefs in benefits of specific foods in relation to diabetes also emerged.“Well, I think that what my daughter is giving me is good, but I like pepper a lot. I like all that, and the doctor says that it’s not bad for me. That’s why I don’t have a lot, a lot of diabetes. They say that pepper cuts a lot of disease and one doesn’t believe it, but that’s what he told me.“ [Female, AC, AOS] When asked about the role of medicine in managing diabetes, responses related to glycemic control. ”Oh, you know what? I don’t [know] too much about the medicine. But you see I’ve been reading a book about diabetes. You can take the medicine just to prevent from getting higher or lower, whatever you call it. But other than that, I don’t know too much about it.” [Male, AC, A08] 69 When asked about barriers to self-management, many responded with the physical and financial costs. ‘Walking is very hard for me. My legs, they swell up and everything makes [it] hard to walk. I lay there. If I’m on it too long, I’m in bed for a day or two, ‘cause it aches real bad. My whole side of my body hurts, you know [Wife: He’s got his wheel chair sometimesf’ [Male, AC, AOS] “I know more less what I should and shouldn’t eat. But when you don’t have the way to get it, that’s hard on a person. If I could buy what I needed to eat right, because of my diabetes, I would be a lot healthier. I wouldn’t have to worry about the, ‘Oh my sugar’s over 500,’ or whatever. But I’m not going to lose a liver. I’m not going to lose this. If we could have that part, then we could buy the food that was necessary. Then we’d be a lot healthier instead of having to worry about what is that you’re eating there. Starch, uh, I don’t want that.” [Female, UC, AOS] 4.3.3 Environmental Factors Most participants (n=22) did not feel they had enough income, although they did have some financial and medical assistance. Most of those with medical assistance, six, had the Ingham County Health Plan which is not insurance, but provides health benefits to low income, uninsured residents of the county, who are not eligible for Medicaid, Medicare, or other programs. Participants did not feel this was a major resource for them. Only three participants responded that insurance had been the most helpful resource. Table 4.8 summarizes the environmental factors obtained from both the medical chart review and the demographic interview questions. Those with unacceptable glycemic control were most likely to have little money and fewer than 5 visits per year. Most participants visited the health clinic four to nine times per year; five people attended the clinic 15-22 times per year (not shown). A dependency on the clinic for support emerged ;there were 196 instances where 70 the clinic, doctor, nurses, or staff were mentioned as facilitators for their diabetes during the in-depth interview as shown earlier in Table 4.5. Less than half of the people (n=12) had visited an ophthalmologist within the past year, perhaps due to the minimal coverage of their health care program. Table 4.8 Environmental factors by glycemic control and acculturation subgroups, n=30. Acceptable Acceptable Unaccepta Unaccepta Total Control, Control, ble Control, ble Control, MOS AOS MOS AOS (n=5) (n=8) (n=9) (n=8L Financial resources Little money 22 3 6 7 6 Enough money 8 2 2 3 1 Medical insurance None 1 1 O 0 0 Medicare &lor Medicaid 7 1 2 3 3 8088 or PHP 2 1 0 O 1 Ingham County 14 3 3 6 1 Health plan PHP 1 0 0 O 1 Other Plans 3 2 1 0 2 Doctor visits/yr . 0-5 12 2 2 4 4 6- 22 18 3 6 6 3 Ophthalmologist visits/yr 12 2 4 3 3 BCBS=Blue Cross Blue Shield/ PHP: Physicians Health Plan MOS: Mexican Oriented Subgroup based on value of difference between Mexican and Anglo oriented subscales where s -0.07 A08: Anglo Oriented subgroup based on value of difference between Mexican and Anglo oriented subscales where > -0.07 71 Environmental factors that also emerged from the in-depth interviews were the social support that the family and health care institution provided. The family offered support by direct encouragement, and by motivating participants to seek care after observing a family member sick with diabetes. In response to, “What would you like to do to be healthy?” an interest in seeing their family mature was commonly voiced. “Just live healthy, just live life. See my kids graduate, see my grandkids, you know.” [Female, UC, MOS] When participants were asked “How do you think having diabetes is different for you compared to your family member with diabetes?” prevention and recognition of the progression of diabetic complications became a comparison point. “The only person that I can relate to is my grandfather. He went through a lot. When I was younger, I remember he had his leg amputated. He went through a lot of pain and I remember that. I don’t, I can’t, even start to think how it was for him to handle, losing his leg, being sick, not speaking English. As for me, it’s tough. It’s just, I think diabetes affects everybody different ways, and, like I said, at different levels. ’Cause it hits people at different times of their lives. And like with me, I’m 32 years old. There’s a lot of things I want to do, and I probably could do some of them still, but not how I wanted to do them. I wanted to drive with my son the first time he got his drivers’ license, things like that. There’s things I can’t do like play ball with them, um, you know certain things. I feel cheated on that.” [Male, UC, MOS] “My sister had a stroke a few years ago and it left her paralyzed on one side. I feel fortunate, you know, that that is when I started, you know, keeping track of my health. That as for diabetes, I’m overweight. So when my sister had her stroke, that’s when I started to, you know, like ‘Whoa’, I have to do something about my health. My way of, um, the foods that I eat and like that. [prompt did your sister have diabetes before she had the stroke?] Yes, she did, diabetes and high blood pressure.” [Female, UC, AOS] “My grandfather was much older when he got it [diabetes, and] he didn’t take care of himself. Or like when he took what he wanted to feel happy, not 72 alcohol, just to say, a coke [soda] and he wasn’t interested in the problems afterward. The difference what would it be? In that I try a little bit, I don’t go on like that if I’m telling you correctly. I drink soda, but every now and then, or like a Coke and Coca Cola, only every now and then. It’s the difference, being consistent with the illness and trying to overcome it.” [Male, AC, AOS] “Now it seems like, it’s, you know, they [family members] try to let me know what I should eat, shouldn’t eat, somewhat like my dad. They ask me ‘cause he’s diabetic too. My mom, she don’t mention too much about it. | feel better, if they don’t let me know what foods I shouldn’t eat, but maybe I should start keeping a diet ‘cause of my weight, my weight.” [Male, UC, AOS] When asked, “When you first found out you had diabetes, who was the most helpful and how?” The family members of many participants offered their own diabetes knowledge as support. One participant and his wife were given the Food Guide Pyramid and other pamphlets on diabetic diets at the health clinic prior to the interview. “Well my wife is trying to give me what the doctor gave me for a guide, you see.” [Male, AC, ADS] A form of family support was in motivation and encouragement. For example, “They were supportive, and told me to just keep going.” [Male, UC, AOS] “My daughter Maria, took me to my appointments. She made sure that l was taking my medication. She made sure that l was eating properly and all that. She would come to the house every 2 or 3 times a week to check on me, see how I was doing. She helped me a lot.” [Female, UC, AOS] ‘Watching my sisters and what happened to my sister Susie; she’s been diabetic for almost 20 years. She’s never taken care of herself. My sister Jamie, she’s been diabetic for about 10 years and she’s just barely started about a year or 2 years ago start taking medication for it. They’re not taking care of themselves. I look at them and see what they’re doing and it’s like don’t you know, that scares me. So that puts me back straight, okay? You can go that way or this way. I’d rather go this way because what they’re doing is not working.” [Female, UC, A08] 73 “They [family] pull me [up] when they see that I’m doing bad. ’No Ma, one doesn’t do that.’ Then they are keeping up with my care, and they all are there to see what I do and don’t do. ‘To see family happy.” Male, UC, MOS] In this study, family, institutional and support from friends were found to have an impact in the practice of self-management recommendations. The health care institution or clinic offered information about diabetes. When asked, ‘When you first found out you had diabetes, Who was the most helpful and how?” one woman responded as follows. “Oh, well just coming to the office, the doctor’s office “cause they kind of monitor how you’re improving or going the other way. They kind of give you pointers. Kind of, ‘Do this, gotta do that, kind of keep you aware that you have this illness. You have to control it, before it gets out of control. So, I think it’s mainly the doctors.” [Female, UC, AOS] Most participants had positive comments about their experiences with institutional care. A common response was to associate their experience at the clinic as like being treated as family. When asked, ‘What is it about where you go for health care that you like or dislike and why?” one participant responded as follows. “Well the doctor, I’ve been seeing him for almost three and a half years. He’s a very good person. The nurses, they’re very nice. They help you with any questions or anything that you need. If they can help you with it, then they will. And they’ll talk to you like you’re part of the family, not like you’re my patient and I’m the doctor; you’re the one paying me. Nothing like that, they’re okay. Why do you think I’m still here?” [Female, UC, MOS] “I come here and I like it ‘cause I just tell them my problem--what’s wrong with me. The doctor right away takes care of it and stuff.” [Female, UC, MOS] “I think we have very good relations here, the same with Dr. Cooke and the nurse who takes my respiration [pulmonary test]. With everyone, we have very good relations until now. They’ve very nice with us and caring with us. I mean, we feel a little bit in a family.” [Male, AC, A08] 74 When asked, “When you need help with your diabetes, to whom do you turn to and how do they respond?” participants relied on family support for reminding to take medication. “Oh my husband helps me out. [How does he help you?] Like if I need him to, you know, get my medicine or cook me something, you know, he’ll help me.” [Female UC, AOS] When asked, “When you first found out you had diabetes, who was the most helpful and how?” participants relied on family support for transportation to attend medical appointments. “My son the oldest, he took me to the hospital, because I didn’t know that I felt so bad. With a lot of thirst I need to go to the bathroom and desperation and it was that I had ‘sugar’. They detected it. The third time I went, I would tell the doctor that I didn’t feel any, any cure because I had a yeast infection. At that time I didn’t, I don’t know why I have this, and it doesn’t go away with the medicine. So on the third time, the doctor did a urine analysis and sent me immediately, because I had it at 500, 475. I already felt really bad. [So your son helped you by taking you to the hospital?] Yes, he would go with me to the appointments, because I felt really bad. I didn’t know what was going to happen, but I felt bad.” [Female, UC, AOS] When asked, “What do you think the role of doctor should be in helping you with your diabetes?” Some responses were as follows. “Just, um, well, just to help you like I said if you need to be under medication, be on top of the medications and steer you the right way in case you do get into a situation. Be helpful mainly.” [Female, UC, AOS] “Making sure that my diabetes is caught up, not caught up, but controlled. Like right now he just added more [increase in insulin dosage] and I’m like ‘Oh, no’. Like how much to take in the needle you know.” [Male, UC, AOS] In some cases, family was the only source of support the participants had available. “My wife, my kids that’s all I have.” [Male, AC, A08] 75 “My daughter or my sister, Mary Anne. If my sugar is low, my daughter will run downstairs and get me some milk or juice or sugar water, something, so I can snap out of it and wake up and go get something to eat.” [Female, UC, MOS] “It’s hard for me to control it sometimes, you know. They do it, like my dad took shots, and my mom took pills. I don’t want to get to the stage where I have to take shots. So it’s just I have to control it and I’m having trouble with that part.” [Female, UC, MOS] Another theme that emerged was social isolation. When asked, “How has having diabetes changed how you act with friends?” “Very little in that, because I don’t have a lot of friends. I am very easily angered. They [sons] already know me, so they themselves don’t pay attention to me. “Mom, calm down, calm down.” But I do get thinking that I am easily angered. When I started with the sugar, and no, I try to be. [Were you more irritable?] Yes, I get like that. But they know and they don’t pay attention to me or I get more angry, because they tell me to calm down. Laughter.” [Female, UC, AOS] Some participants specified that their only source of support came from family. “I just, I don’t have, it’s just me and my husband. ldon’t, I just go to work and come home, you know. I associate with family, that’s about it.” [Female, UC, A08] The third theme that arose under social support was the influence of diabetes on daily life. One aspect in which diabetes affected the daily lives for those participants, who did maintain relationships with friends, was in social settings. They felt it was difficult to follow the diet in social settings such as parties. They were asked, “How has having diabetes changed how you act with friends?” and many responded similarly to this participant. ’Well, because they like to go out to eat. They like to do things like drink. Well, I don’t drink because of my pancreas, because of the problem with my diabetes. And they think it’s weird, because they’re over there drinking their 76 beers and I’m over here drinking diet Pepsi. | tell some. ‘I don’t drink, I can’t drink’. You know and especially if I go to, go out to eat, I have to know how much what I’m eating, and if it’s fried, boiled or steamed, because if it’s grease, cooked by grease, I really cannot eat it then. If it’s boiled, I probably can, because I have to watch the grease, fatty intake.” [Female, UC, A08] The themes that emerged reflected the support offered by the health care institution in offering advice on self-management behaviors, treatment for disease management and knowledge about outside diabetes resources available such as pamphlets and hospital diabetes classes. The participants considered the doctor a resource for useful information regarding diabetes and self- management behaviors. The majority of participants had not participated in diabetes education, but most were aware that there was diabetes education available to them as shown in Table 4.7. There were underlying issues, however, for why some people with diabetes did not participate in the diabetes classes. Some participants had concerns about cost, lack of transportation, and for those who had had diabetes for a long time, the belief that they had more knowledge about diabetes than what the diabetes classes could offer. A collaborative clinical care goal was elicited from a client when asked, “What do you think the role of doctor should be in helping you with your diabetes?” “His main role is kind of watch over that l keep--if he gives medication to make sure that I take it. If he tells me to do exercise, I should do what he recommends.” [Female, UC, AOS] Safety of their neighborhood emerged as a concern that could impact lives either positively or negatively. The participants’ surroundings were important in how safe they felt in their community. Some participants did not 77 think that their location of residence, typically in the community near the clinic, related to their disease management and others did. “I don’t think it does [do you think it would be different if you lived somewhere else?] not at all.” [Male, UC, MOS] “Here, I don’t believe it’s so calm. Because there are a lot of drugs around, so it’s not calm. That the police maintains it’s calm, well that’s because they are keeping guard so there are no altercations.” [Male, AC, AOS] “Um, I don’t feel safe. I think, me, not feeling safe, it just kind of makes everything kind of harder for me as far as trusting myself and trusting, um, my body how it feels sometimes. A lot of it with me has to do with my eyes ‘cause at night time my eyes will play tricks on me and make me feel uncomfortable. With the new area we moved into, it’s like I said, I don’t, I’m not able to trust it or trust myself to feel comfortable.” [Male, UC, MOS] 4.4 Revisiting the Objective of the Study The objectives of the study were to 1) describe and contrast self- management behaviors in Hispanic adults with physician diagnosed type 2 diabetes and who are either in acceptable (HbA1 c < 8) or unacceptable glycemic control (HbA1c 2 8) and 2) to determine if and how acculturation relates to self- management behaviors (dietary adherence, regularity of exercise, taking medication as prescribed, home blood sugar monitoring, weight control, and visiting with the doctor and ophthalmologist once per year) and diabetes control in Hispanic adults with physician diagnosed type 2 diabetes and who are either in acceptable (HbA1c < 8) or unacceptable glycemic control (HbA1c _>_ 8). Of specific interest were barriers and facilitators to achieving these recommended behaviors. Through the exploratory qualitative questions and quantitative biomedical markers, we were able to identify some of the challenges of self- 78 management of diabetes (diet, exercise, disability and safety) and some of the facilitators (support from family and health care provider). 79 CHAPTER 5 DISCUSSION Key findings showed that the people with diabetes of Hispanic descent in this study had difficulty incorporating the ADA lifestyle change recommendations. Although most participants reported following a diet and exercise as facilitators to diabetes self-management, data from the dietary recalls demonstrated that overall, this group of participants did not follow the recommendations for diet and exercise. From the qualitative data, the poor adherence to exercise recommendations was related to the high proportion of disability in participants and a decreased sense of safety within the community. Support of family and the health clinic staff as well as understanding the complications of diabetes emerged as facilitators for diabetes management among this group of Hispanic adufls. 5.1 Individual Factors Individual knowledge of diabetes, such as recognizing the disease progression and identifying complications were viewed as facilitators of self management and associated with glycemic control. In this study the inability of many participants to answer, “What is diabetes?” demonstrated a lack of knowledge that hinders behavior change, because good knowledge of diabetes enhances an individual’s self-efficacy and facilitates behavior change (Sousa et aL,2004) The concept of acculturation is important when interacting with Hispanic people in the United States, because it has been shown that risk factors for type 80 2 diabetes such as--diet, obesity, socioeconomic status, and health behaviors—- differ for people at different levels of acculturation (Aldrich et al., 2000; Cantero et al., 1999; Hazuda et al., 1988; Neuhouser et al., 2004). In this study the differences in barriers and facilitators of self-management between the acculturation groups were subtle. For example, the ADS was more likely to perceive diet and exercise as a barrier than MOS. Distinctions between acculturation groups were most noticeable in the food choices reported on the dietary recalls. It is of interest that the ARMSAII scale identified only 14 as MOS of the 23 people who identified their origin as Mexican. Similar to findings in a study that conducted focus groups with Mexican Americans (Coronado et al., 2004), participants in this study described diabetes as a “very serious, life-threatening illness.” The focus group participants from Coronado’s study in the state of Washington identified a diet high in fat, sugar or calories, lack of regular exercise and heredity as risk factors for diabetes. In another study, strong emotions such as fright (susto) were identified as a precipitator to diabetes onset (Coronado et al., 2004), but in the present study only one participant attributed their diabetes onset to “susto.” The findings of the present study are consistent with those from prior research by Caban et al. (2006) in that the participants placed more emphasis on symptoms of diabetes and less on biological characteristics versus European Americans who placed more emphasis on bio-psychosocial explanations. People more acculturated from the Mexican and Central Americans tended to place the emphasis on bio-psychosocial explanations like European Americans 81 (Caban et al., 2006). In a qualitative study conducted in San Antonio and Laredo, Texas, 93% of Mexican Americans attributed the cause of diabetes to genetics and poor diet (Hunt et al., 1998). Lifestyle factors such as substance use, alcohol, consumption, smoking, and not getting enough rest were associated with diabetes onset by 70% of participants (Hunt at al., 1998). Although the present study did not directly ask participants why they got diabetes, some people did indicate that older family members had diabetes, confirming a family history of diabetes. 5.2 Behavior/Lifestyle Factors Findings from the qualitative in-depth interviews demonstrated that these adults were not meeting the American Diabetes Association lifestyle recommendations for diabetes self-management (ADA, 2006), in regards to following the diet, getting physical activity and annually seeing an ophthalmologist. Those participants with poor glycemic control failed to limit carbohydrates to 50-55% of energy and saturated fat to 7% and to eat 259 fiber. Participants with acceptable glycemic control reported more fruits, salads and water compared to those unacceptably controlled, who reported more tortillas, pork products and more cultural foods. Dietary data was the only behavioral factor associated with acculturation. Consistent with other literature (Hubert et al., 2005; Neuhouser et al., 2004), the more AOS had a lower quality diet and were the least successful in self-management of diabetes as evidenced by a higher HbA1c compared with the MOS. 82 Participants recognized that healthy dietary choices such as water, salads and vegetables improved their well-being. Participants especially identified fruits and vegetables as helping them manage diabetes. Participants often referred to cultural foods as “Mexican food” describing such foods as barriers to self- management. Because this group was getting services from a clinic that served patient with low incomes, it was not surprising that financial resources were a barrier when trying to obtain the right foods for diabetes management. The clinic was located in a neighborhood of mostly Hispanic people with few options for grocery shopping. Both factors are important influences on health outcomes for people with diabetes (Brown et al., 2004). Recent studies have clearly demonstrated an inverse relationship between diet quality and food costs (Drewnowski, 2004; Maillot, 2007). Researchers have demonstrated that nutrient dense foods like vegetables, fruits and meats have a higher cost per calorie compared to sweets and salted snacks suggesting that the low cost of energy- dense foods is a mediating factor in the association between poverty and obesity (Drewnowski, 2004; Maillot, 2007). Although participants identified physical activity as a facilitator for diabetes management, there was no difference in time reported in physical activity between those in glycemic control versus those who were not (3.26 vs 3.01 hr/wk, respectively). Although both groups considered physical activity important and reported doing it, they also both identified disability as a common barrier. Disability poses a barrier for physical activity and is often associated with comorbidities of diabetes (Gregg et al., 2002; Stuck et al., 1999; Volpato et al., 83 2003). This was true for the participants in the unacceptable control group, where disabilities included retinopathy that left people unable to self-monitor blood glucose and neuropathy that lead to amputation. For those in the acceptable diabetes control group, physical activity was mostly done at work; where as those in the unacceptable control group were more likely to be disabled. PeOple in the present study suffered from a variety of disabilities that interfered with physical activity recommendations such as inability to walk, compromised vision and concern with unsafe neighborhood. In an elderly population of veterans disability was also an important barrier to self- management of diabetes (Murata et al., 2003), but this study is the first to report the common occurrence of disability among low income Hispanic adults with diabetes. Participants viewed diabetic medications as facilitators to self management, demonstrating a reliance on medications to control diabetes over other self-management behaviors. Nevertheless, many participants found it difficult to remember to take medications. Only 12 participants reported annual ophthalmology examinations for prevention and screening of retinopathy in the present study. The barrier for eye specialist visits for these participants was financial; about half of participants only had the county health insurance plan which did not include visits to specialists. Few barriers to self-management behaviors the participants reported are easily addressed by interventions and none without expense. For example, financial aide would be necessary to extend health insurance to cover 84 ophthalmologist visits, provide physical activity for people with disabilities, and conduct food and nutrition education in the home for people on special diets with limited incomes. 5.3 Environmental Factors Environmental factors emerged with the participant’s family and health care institutions as primary facilitators for self-management. On the other hand, the neighborhood in which they lived often emerged as a barrier for diabetes self management when it was a concern for safety, a finding supported in another study (Vincze et al., 2004). 5.3.1 Family Families were a reliable support when help was needed with diabetes as a major source of support offering encouragement, motivation and advice. For some, family was the only source of support. The participants sought out family members with diabetes for support, their knowledge of and experience with the disease progress, and for help recognizing disease complications, a finding also supported by previous research (Gleeson-Kreig et al., 2002). For a few participants in this study, however, family turmoil, such as small children not understanding the home care demands diabetes and having to care for a sick family member, made family feel more like a barrier than facilitator to self management of their disease. 5.3.2 Health Care Institution These participants also identified their community health care providers and staff as a source of support. Participants in this study found that the staff at 85 the clinic were friendly, made them feel “like family” and provided educational reinforcement on diabetes management. That participants demonstrated their trust with their health care providers in the local clinic by returning for follow up care. Consistent with this finding, one study found that Hispanic people with chronic diseases were more likely to visit a doctor and return for care when they trusted the physician and medical advice (Larkey et al., 2001). Implications for health care professionals is that providing a comfortable, family-like environment in the health care setting can lead to better diabetes control if individuals feel that their health care providers treat them like family. 5.3.3 Neighborhood Most of the participants in this study lived the neighborhood proximal to the clinic. The ethnically diverse neighborhood includes many people of Hispanic descent. Living in close proximity to the clinic was facilitator for regular health care, but the same neighborhood was also a barrier to getting physical activity because it was perceived as unsafe. Literature demonstrates that the environment relates to general health outcomes (Brown et al., 2004) as found here. There was a lack of safe areas to walk and one participant reported hearing gun shots periodically. This study was also consistent with other research in finding barriers attributed to low income and the physical environment lacking access to affordable and accessible stores, restaurants, and recreation facilities (Kieffer et al., 2004). 86 5.4 Implications for Practice Findings from this study have the following implications for future studies, health care practice and diabetes education. Health care professionals should acknowledge and include the patient’s source of support into counseling and treating them. Participants in this study relied and trusted the resources available to them at the clinic, such as counseling offered by clinic staff as much as they relied on their own family members. This implies that health practitioners should adopt a personal approach when providing medical care to this population. Diabetes education developed for Hispanic persons should include and encourage the involvement of family as part of the treatment and self- management processes taught to achieve glycemic control, along with adopting a personal approach to counseling. Family based interventions for the treatment of diabetes have proved successful in improving glycemic control in both African- American and Mexican-American populations (Becker et al., 2005; Brown et al., 1995) Incorporating cultural information and tailoring the interventions to address Hispanic persons with diabetes has shown positive outcomes on behavior change (Garvin et al., 2004) and is one that should be expanded. One study provided evidence for an effective Spanish language intervention aimed at a combination of chronic conditions (heart disease, lung disease and type 2 diabetes) into a single program, “T omando Control de su Salud” (Lorig et al., 87 2005). The lack of disease understanding and poor food choices found in the present study are areas culturally sensitive interventions should address. Findings from this study imply there is a great need to find and develop innovative education programs tailored for people with disabilities in order to treat their chronic diseases. The importance of physical activity in combination with diet and medication working together for diabetes patients needs to be emphasized. To increase the physical activity in this population, it will be necessary to find innovative ways to incorporate physical activity into their lifestyle. Daily walking, house work and child care might be a few ways to encourage participants to include physical activity in their daily lives. Helping people with diabetes and disabilities to find access to transportation and financial aide is an important service to include in interventions for this population. 5. 5 Strengths and Limitations This study was somewhat unique in using mixed methods to explore the relationship between acculturation and glycemic control in low-income Hispanic adults with type 2 diabetes. Qualitative in-depth interviews, quantitative data and the coding of data by two individuals was used to triangulate the data between what the participants said and what their actual biomedical markers indicated. This study is the first to our knowledge to identify that Hispanic adults with type 2 diabetes and limited incomes are likely to have physical disability and other diseases that act as barriers to physical activity. A major strength of this study is that the researcher was bilingual and bicultural and of the same ethnicity as participants. This contributed to the accuracy of language translation and 88 interpretation of data. The researcher’s ethnicity and biculturalism helped build rapport with participants and clinic staff. There were several limitations to this study. The small size and relative homogeneity of the sample might have been responsible for the lack of association between acculturation and glycemic control. That is the study was not adequately powered. Findings from this study cannot be generalized to all Hispanic people in the US. or even in Lansing, because this was not a random sample. As discussed in the next section, recruitment bias due to various factors like gender, time and the incentive clearly occurred. 5.6 Recruitment Challenges During the recruitment period, only 5 persons approached at the clinic refused to participate, one female claimed she did not have diabetes even though it was clearly diagnosed on the chart and confirmed by the doctor. Two males refused to participate when the researcher approached each on a day when an undergraduate student accompanied the researcher (this student happened to be of different ethnicity of researcher and patients). The other two participants, both females, simply were not interested in participating. One patient signed consent forms to participate but could not stay to do the interview on that same day and the researcher was unable to follow-up due to incorrect contact information. During the last phase of recruitment, finding unacceptably controlled males according to criteria was more difficult. The clinic doctor identified individuals who fit criteria and attempts by phone were made to recruit the final three participants. Of nine individuals identified, four had incorrect/non-working 89 phone numbers, one was not interested, two agreed to come in, but one was unable to make it due to transportation issues, and the other did not show up. Participants were more likely to be recruited while researchers waited at the clinic for patients to show up to their medical appointments. A daily appointment list available described what conditions patients were being treated for on the appointment date and made recruitment of participants more feasible. Unacceptably controlled males seemed to come in to the clinic less than females and acceptably controlled males. One male agreed to participate, stating he had diabetes and went through the interview. The doctor then informed researcher that he had the same name as another patient who did have diabetes and the patient interviewed was a recovering alcoholic and drug addict who confirmed a diagnosis of diabetes to obtain an incentive. Clinic staff was vital in identifying potential participants and occasionally called researchers if they had a patient in the clinic when researchers were not there. Researchers also volunteered Spanish skills during waiting time for patients and helped translate for nurses who did not speak Spanish. When obtaining the 2"d diet recall, problems encountered were wrong phone numbers or numbers no longer in service. The best way to collect 2“d diet recalls was to have patient return to clinic or when patient returned for next appointment since some of them came in once a month. Three interviews were conducted at home, these participants were recruited at clinic and wanted to participate but were unable to stay the same day. One participant was obese and could not sit down in the wheel chair for a 90 long time so she invited a researcher to her daughter’s house where she was staying. Another participant lived 30 minutes outside of the city and could not stay to do the interview on the day of her appointment because she had her grandchildren with her. This participant also agreed to a home visit by a researcher to do the interview. The last at home interview was a male who could not stay at the clinic because he had another appointment and his whole family (wife and two children) were with him the day he was recruited. 5.7 Conclusions In summary, this is one of a small group of studies to provide a glimpse into the lifestyles of Hispanic adults with type 2 diabetes from families with limited incomes. A major finding of this study is that among those participants in the unacceptably controlled group, health concerns were confounded with socio demographic factors affecting daily life and the ability to make behavior changes. For example, some barriers for glycemic control were living in an unsafe neighborhood, having a physical disability and lack of financial resources to obtain food and medical necessities. Diet was impacted by acculturation. Participants in the acceptable glycemic control were more likely to eat salads, water and fruits and those participants in the unacceptable glycemic control group were more likely to choose tortillas, pork and fast foods. Thus diabetes education programs for this low-income population should aim to help these individuals reduce the barriers or finding innovative ways to overcome such barriers preventing the compliance with achieving recommended self-care behaviors. 91 APPENDICES 92 .08:05580. 0.0 0:0 00.00 >00. 00.05.005.200 0-: 00.>0.0 :05 0055.55 00 0.00:0 0.0. 0:0.. .0 00.0.5 .0>0 05.0.x0 -0.0 :...s 0.000.205 5.000.050: .0 .0:. 0. 50.02000 0: 0. 00.00.88 0. 8.80.0 :...s 0.000.205 .0 .0: .0.0000>0.0.00 0: .r 0.00; .00 :0.. .0 005200 N H 90.00.08 .0000 >000... 000 v 0.0. 00.05.00 50.. 00.6.8 .08. axon v .0.0.00.0:o 0:0 .0. >.0.0.n_ .200. 8.050.552 00.0 0:0 080 0:. .5 88.30.00 0.0>0_ 00.0.5 >..00 55.... 0050080 :05... 0.00 0.0 0.80.0030 0>.....:::0: 0:0 0.88.0 .0000 9.0.5 >0.0:0 0000x0 0.0>0 0. :0x0. 00 0.00:0 0.00 .0:0..00.005 05.0.50. 00000.0 .0:.0 .0 5.00:. :...s 00.0>00 .:0.0 .005 0:. 0 00000.. ..0 :0.0 .005 0:. :. 00.0.050900 <0“. >0 00>0.000 0.80.0030 .090 .0. 00.0...0000 00 :00 0000. 0550.80.08.05 . 0>.....0:-:0:.0..0.00 000000.”. 0.80.0026 0.0:; 0 00 :0..0.:000 0:. .0. :09 02000.0 5.: 0.0000 .0. 00.0.5 .05.. .0:0.: 0 0:055000. 0. 05x00. 0. 00:00.>0 ..0>0.so... .0000. 0550.89.05. .0 >.0..0> 0 050080 0. 0000.088 >00..0:.. 0.0 00.050... :55 0.0000 55.0.0000 .9800 0:. .0. 0< . 0cm: .0 05200000.. 00 M .00.”. .820 098.080 0. 00.905098 .0.0. :05... 0020000 .0:. .0>0 ...0:0: .0:0...000 .0805 0 8.5.0 >5 000. 0:0 x005 0.500>_0 .0 000 0: h .9500 0.500>_0 0:.>0.:00 :. >00.0..0 >0. 0 0:.050. :0..05..00 0000:-000:0..00x0 .0 .000:0:0x0 .05.:000 0.0.050900 >0 .0505... 0.905098 055.50.... 008000. 0.:. 0.00..0 00.0 0080.0 000.0 :0 0000. 0550500 0.0.0>:0900 .0 00>. 0:. .0: .0888. .0.0:0.0.000 .0 5055.0.00 >.05..0 0:. >..000: 0. 00.0005 0.905098 .0 .::05< 02000.0 .0 50500805 0:. :. 000:055000. .0: 0.0 >830? v 0. 8.9050900 .0.0. 05.00.00. 0.0.0 0.0.050900-30. .>00\0om. 0.0.0.5098 .0 00>. 0:0 5:05.... 5.00: 0000 .0. 0000.088 0. 5.5-.0. 30. 0:0 005000. .0590 0.0:; .00.:0.000> .059. 50.. 0.905098 080.05 .0:. 9800 >.0.0.0 < 0.08:0... 82000055000... 2.2.52 ZOFSUOmm< mm-PmmSD z<0Em2< .oocN szFm<223m n< X_Dzmn_n_< 93 ....z.2 0..5 0050500 00 0. 0000: .0.:0..00.005 .. .0 0.000 00000.0 000.0 0>0.:00 0. 50.5.50 00 _..>. 0.00:. 0:0 0000. 5 0505.00.00 .00.002. 055.900 0. 0000 00 :00 05.0.50... 00000.0 0500.0 05000.0 000.0 0:0 .0.500.0..0>0 .0.500>.0 0>0.05. 0. 02.0 :0 5 >..>..00 .00.0>:0 0000.05 0. 0:0 5580 0:0 .0.0.00.0:0 .00.00 >..0. 000.. 0:0 00.0.0.00 >0.0:0 .0 09.0.5 00000. .00. 0:0..00...005 0.>.00... 5050.05. 0. 00005080 0.0 09000.0 0 00>. 0...... 0.000.>.0:. >..>..00 .00.0>:0 0000.05 50.000 .0.0.00.0:0 00.00 >..0. 000.. 0:0 00.0.0.00 >0.0:0 ”.0 09.05. 00000. 09000.0 0 00>. .0. 050000 0080.0 000.0 00.0. >05 0.5.0 0055 0 5 00. .0000.0 0...... 00.00080 90.05098 .00 0:0..0..:00:00 5.005 0:0 00000.0 :0 .0000 0.000 0: 00: .850 00.0005 :00)... 80050080 .0...00.0 0.0.0005 09000.0 :52. 0.000.>.0:. 0. .000. 0...... 0050080 00 0.0000 .0000.0 080000.980 5.00:. .0 5.005 0:.00 0.000.505 :. 0.500>_000>0 .0538: .0 0.0.. 00000. 0 0. .505 .0. 000. .0 >00 .00 9.5.0 03. 0:0 :0502. .0. 000. .0 >00 .00 0.5.0 0:0. .:0050 0.0.0005 0 0. 09.5.. 00 0.0000 9.0.5 >..00 ..0:00.0 000 0. 000000 09000.0 0...... 0.500 .. 5.0. 0:0. 0050.505 0.0 0...0:00 0000. .00. 0000.50.00 :000 .0: 00: .. .0.500>.0 00.6.05. 0:0 000. .00.02. 5.9-..000 00000.0 >05 0.0.0 0000 0000:..< 52.055: 0.0 85.00.5500 0.. 0:0 50500805 09000.0 :0 0000.00 .0 0000A 9.0.5 590.0 .0 0.09.0 5.90:0. 0..» .05.. 0.0. .0 000. .00.02. .0. 000.05 0 00 000:055000. .0: 0.0 0.0.0 5990-00.... 0.500000%: 050.00.: .:0>0.0 .0 0.000 .00.. 0. 0000 00.0: 0.0000 590.0 00:. 0:0 0008000. 5.00:. 50.00 0000.05 0000.00 0:0..0..:00:00 00000.0 0500.0 0000.05 .0: 0000 50.0.0 09000:. 09000.0 0 00>. 0...... 0.000.205 5 005005 00 0.00:0 9.0.5 590.0 .0000 .00. .000000 0. 00:00.>0 50.0.0005 0. 0.0:. .8005. .0:0. .055: 0:0 09000.0 0...... 0.000.205 .0”. :0502. .0. 000. 9.0.5 >..00 >00 .00 m .0 F >0.0:0 .90. .0 $00-0. .0080... 50.0.0 0.00000: 000000055000". 50.052 AOL-200v zO_._.<_Ome< mmhmmSO z<0Em2< 6ch mZOFm<223m 94 Cl- APPENDIX B: PARTICIPANT CONSENT FORMS “Relation of Acculturation to Glycemic control and self-management of diabetes in Hispanic Adults” Participant Consent From Investigators: Lorraine Weatherspoon PhD, RD (517) 355-8464 ext. 136 Sharon Hoerr, PhD, RD (517) 355-8474 ext. 110 Julie Plasencia (517) 355-8474 ext. 164 We invite you to participate in a research study that will help us understand how culture and where we live influences how Hispanic people manage their diabetes. Diabetes management practices include monitoring blood sugar, exercising regularly, following dietary recommendations, taking medications, visiting with doctor and visiting with an ophthalmologist. This study consists of an audio taped interview that lasts about one hour, a review of your medical chart by Julie Plasencia, a graduate student in nutrition, and a follow-up phone call about food intake that will last about 30 minutes. There are no risks or discomforts associated with this research. All the blood work gathered will be information normally obtained by Cristo Rey Clinic for patients with diabetes. You will not benefit from your participation in this study, but your participation in this study may contribute to the understanding of the difficulties in managing diabetes. Your participation is voluntary, you may choose not to participate at all, or you may refuse to participate in certain procedures or answer certain questions or discontinue your participation at any time without penalty or loss of benefits. Upon completion of the interview, a chart review and follow up phone call, you will receive a $25 gift card to Wal-Mart in appreciation for your participation. Your privacy will be protected to the maximum extent allowable by law. Your signature below indicates your voluntary agreement to participate in this study and that you are giving us permission to audio record the interview. If you have questions or concerns regarding your rights as a study participant, or are dissatisfied at any time with any aspect of this study, you may contact (anonymously, if you wish) - Peter Vasilenko, Ph.D., Director of Human Research Protections, (517)355-2180, fax (517)432-4503, e- mail irb@msu.edu, mail 202 Olds Hall, Michigan State University, East Lansing, MI 48824-1047. Print Name of the Subject: I will allow the interview be audio taped: Yes No Signature of Research Participant: Date: Signature of person obtaining consent: Date: 95 “La relacion de aculturacion con el control de azucar en la sangre y el control del diabetes en adultos Hispanos” Forma de Consentlmiento del Participante lnvestigadores: Lorraine Weatherspoon PhD, RD (517) 355-8464 ext. 136 Sharon Hoerr, PhD, RD (517) 355-8474 ext. 110 Julie Plasencia (517) 355-8474 ext. 164 Esta invitado a participar en un investigacién sobre Ias practicas que usas para controlar tu diabetes. Estas practicas son cosas como chequear el nivel de azUcar, hacer ejercicio regularmente, seguir Ias recomendaciones alimentarias, tomar medicamentos, visitar al medico, y visitar con el oculistas. Este estudio consiste de una entrevista grabada en audio caset que durara una hora, Julie Plasencia, estudiante de postgrado en nutricién, colectara datos en su expediente o carta medica y consecuentemente haremos una Ilamada telefbnica en donde colectaremos un historial de alimentos consumidos por un dia que durara aproximada mente 30 minutos. Este estudio no involucra incomodidades y todas Ias pruebas de la sangre seran examenes que la Clinica Cristo Rey normalmente obtiene para sus pacientes. No tendra ningun beneficio de resultado de su participaciOn, pero su participacién ayudara a comprender Ias dificultades que hay en controlar el diabetes. Su participacién es voluntaria, puede decidir no participar o puede decidir no participar en ciertas partes o contestar ciertas preguntas o descontinuar su participaciOn sin cualquier penal o pérdida de beneficios. Su participacién en este estudio es completamente voluntaria y seguira recibiendo servicios médicos de la clinica si desea o no participar. Puede decidir no contestar Ias preguntas que no se siente cemodo. Si desea participar en este estudio y después decide descontinuar, puede retirar su consentimiento y descontinuar su participacién. Recibira una tarjeta con valor de $25 a la tienda Wal-Mart por participar en el estudio si complete Ia entrevista, después que el investigador revise Ia carta medica, y complete el segundo registro de comida por teléfono. Su privacidad sera mantenida a todo grado de la ley. Su firma en esta forma indica que su participacién es completamente voluntaria y nos da permiso de gravar la entrevista. Si tiene preguntas o preocupaciones sobre sus derechos como participante o esta disatisfecho en cualquier aspecto de este estudio, puede comunicarse (andnimamente si deseas) con - Peter Vasilenko, Ph.D., Director of Human Research Protections, (517)355-2180, fax (517)432-4503, e- mail irb@msu.edu, mail 202 Olds Hall, Michigan State University, East Lansing, MI 48824-1047. Nombre de participante: Doy permiso que la entrevista sea grabada: Si No Firma de participante: Firma de la persona que obtiene el consentimiento: 96 EL. APPENDIX C: CLINIC APPROVAL MICHIGAN STATE Initial '83 u N l v E R s I T Y ApplIcatIon April 22, 2006 Approval To: Lorraine WEATHERSPOON I 334 Trout FSHN Bldg MSU Re: IRB ll 06-238 Category: EXPEDITED 5,6 Approval Date: . April 22, 2006 Expiration Date: April 21, 2007 Title: RELATION OF ACCULTURATION TO GLYCEMIC CONTROL AND SELF-MANAGEMENT OF DIABETES IN HISPANIC ADULTS The Institutional Review Board has completed their review of your project. I am pleased to advise you that your project has been approved. The committee has found that your research project is appropriate in design, protects the rights and welfare of human subjects, and meets the requirements of MSU's Federal Wide Assurance and the Federal Guidelines (45 CFR 46 and 21 CFR Part 50). The protection of human subjects in research is a partnership between the IRB and the investigators. We look forward to working with you as we both fulfill our responsibilities. Renewals: IRB approval is valid until the expiration date listed above. If you are continuing your project, you must submit an Application for Renewal application at least one month before expiration. If the project is completed, please submit an Application for Permanent Closure. Revisions: The IRS must review any changes in the project, prior to initiation of the change. Please submit an Application for Revision to have your changes reviewed. If changes are made at the time of renewal, please include an Application for Revision with the renewal application. Problems: If issues should arise during the conduct of the research, such as unanticipated problems. adverse events, or any problem that may increase the risk to the human subjects, notify the IRB office promptly. Forms are available to report these issues. Please use the IRB number listed above on any forms submitted which relate to this project, or on any correspondence with the IRB office. Good luck' In your research. If we can be of further assistance, please contact us at 517-355-2180 or via email at IRB@msu. edu. Thank you for your cooperation Sincerely, ,-"/ Wye/mg. Peter Vasilenko, Ph.D. BIRB Chair CI - Sharon HOERR Julie Plasencia 204 GM Trout Bldg 334 GM Trout Bldg Dept FS 8 Human Nutrition Dept FS & Human Nutrition 97 EL. APPENDIX D: CLINIC FLYER Diabetes Interview We invite you to participate in a study designed to explore the self- management practices of Hispanic persons with diabetes as influenced by society, culture and environment. This study consists of an audio taped interview that lasts about one hour, a review of your medical chart for laboratory data, completed by investigator, and a follow-up phone call where we will collect one day's food intake. There are no risks or discomforts associated with this research. Your privacy will be protected to the maximum extent of the law during and after this research. To be eligible, you must be: Over 18 years of age, Diagnosed with Type 2 diabetes, Are of Hispanic/Latino descent, You are a free-living, noninstitutionalized individual As a thank you for your participation, you will receive a $25 gift card to Walm- Mart To participate in this study, contact Julie Plasencia at (517) 355-8474 ext 164 or indicate to the nurse or doctor that you are interested in participating in this study. Entrevista sobre el Diabetes Estas invitado a participar en un estudio sobre Ias practicas que usas para controlar tu diabetes. Este estudio consiste de una entrevista grabada en audio caset que durara una hora, usaremos los datos en su expediente o carta medica y una Ilamada telefonica en donde colectaremos un historial de alimentos consumidos por un dia. Toda informacién que tiene referencia su identificacion sera mantenida en confidencia a todo grado de la ley. Para ser elegible, tiene que ser: De al menos 18 afios, Diagnosticado con diabetes tipo 2, Descendientes Hipanos/Latinos, lndependiente, no institucionalizado Para dar gracias pos su participacién, recibira una tarjeta con valor de $25 a la tienda Walm-Mart. Para participar en este estudio, contacts a Julie Plasencia al telefono (517) 355- 8474 ext 164 o indique a la enfermera o doctor que tiene interés en participar en este estudio. 98 APPENDIX E: INTERVIEW GUIDE INTERVIEW GUIDE Engllsh ID Number Date of Interview Demographic Information 1) Gender: Male_ Female _ 2) How long have you had diabetes? 3) How often do you visit the doctor in a year? 4) Who else in the family has diabetes? (grandparents, parents, siblings, children) Medication 5) Do you take insulin shots? (1) Yes __ (2) No— (3) NA— 6) Do you take diabetes tablets? (1) Yes __ (2) N0__ (3) NA— a) Do you have any problems taking diabetes tablets when you are supposed to do so? (1) Yes __ (2) No__ (3) NA— b) What do you do if yes in 6b: (1) Take it later— (2) Wait until the next medicine time____ (3) Other (Specify) 7) Do you take other medications? Monitoring 8) How often do you check your blood sugar at home? 9) Do you check it yourself? Who helps you check your blood sugar? 10) What interferes with our blood sugar testing at home? 99 a) I don't know how to do it b) It hurts c) I don’t like it d) Other (specify) 11) Do you follow any special diet? If so, what do you do? Do you follow it: a) all the time b) sometimes c) never 12) Do you exercise? a) What do you do? b) How long do you do it? c) How many times per week? 13) Can you tell me what diabetes is? Interview questions based on research questions: 1) How do cultural/social factors facilitate or inhibit the management of diabetes? Family history of Diabetes 14) If they have relatives who had diabetes ask: How do you think having diabetes is different for you compared to your family member with diabetes? Relationship with family 15) When you first found out you had diabetes, who was the most helpful and how? 16) Describe the different responses you received when you first told your family you had diabetes? Prompt — Can you give me an example? were they supportive of it? Did they help in your diabetes management? If so, how? 17) When you need help with your diabetes, to whom do you turn to and how do they respond? Prompt - friends, family, doctor 100 2) How do you subjects values and behaviors influence self-care practices of diabetes? Behaviors 18) Describe how having diabetes has changed your life. What do you do differently now? Prompt: after being diagnosed with diabetes? How has your daily routine changed? 19) How has having diabetes changed how you act with friends? 20) What have you been told is important in taking care of your diabetes? Prompt: How do you feel about that? Beliefs/values 21) Describe some of the things you do well about managing diabetes and why? Prompt: Which of these do you do best? 22) Describe some things that you don’t do well. Prompt: What makes it difficult for you to do this well? 23) What if any, are the advantages to managing your diabetes? Why? 24) What do you think the role of medicine is in managing diabetes? And What do you think the role of food is in managing diabetes? Prompt: Do you think that one is more important than the other? Attitudes (barriers, facilitators) 25) What do you do on a daily basis to take care of yourself or your diabetes? Prompt: exercise, medical care, diabetes education school? What do you think is the best way for you to take care of yourself? 26) What would you like to do to be healthy? 27) What helps you in taking care of yourself? Prompt: What are some things that helped you manage your diabetes? 28) Are there any specific foods or other things that you believe help you with your diabetes? Prompt: What are they? Tell me how they/it helps you? 29) What keeps you from taking care of yourself? Prompt: What are some of the difficulties in managing your diabetes? 30) What is the most difficult thing about controlling your diabetes? 31) What is it about where you go for health care that you like or dislike and why? 32) What do you think the role of doctor should be in helping you with your diabetes? 101 3) How does location influence the aspects of diabetes self-care practices? Structure 33) Describe the community that you live in? Prompt: is it safe, tranquil, dangerous? 34) How does where you live affect how you can care for managing your diabetes? Prompt: How is it different from where you lived before? Availability of resources (physical activity, medical assistance, dietary education) 35) Where and from when did you learn how to take care of yourself? 36) What organizations, groups individuals do you get helpful information from? 37) What has been the most helpful resource or thing for you? 38) Have you taken classes on diabetes? Prompt: If no, Do you know if diabetes education is available to you? 39) Anything else you want to tell me about your management of diabetes? 102 The Brief Acculturation Rating Scale for Mexican Americans-II Modified by Julie Plasencia to include items 13-17. (5) Almost Always/Extremely Often (4) MuchNery Often (Mainous et al.) Moderately (2) Very Little/Not very Much (1) Not at all 40) Do you speak Spanish 41) Do you speak English 42) Do you enjoy speaking Spanish 43) Do you associate with Anglos 44444 NNNNN commons: APP-RP 44) Do you enjoy listening to English language movies 01 01010101 45) Do you enjoy Spanish language T.V. 46) Do you enjoy Spanish language movies 47)Do you enjoy reading books in Spanish 48) Do you write letters in English 44444 NNNNN 0300006000 A-h-bb-b 49) Is your thinking done in the English language 0101010101 N h 50) Is your thinking done in the Spanish 1 language 01 51) Are your friends are of Anglo origin 1 52) Do you talk to friends and family in your 1 country of origin. 0101 MN 0) 0000 GO .5 53) Do you talk to friends and family in the 1 2 United States. O) .5 54) Do you use traditional medicines/home 1 2 remedies to care for diseases and sicknesses What is your country of origin/ethnic origin is: Mexico Puerto Rico Dominican Republic Cuba Argentina Columbia Peru Guatemala El Salvador Costa Rica United States Demographic Information 55) How many consecutive years have you lived in the United States? 56) What is the highest grade of education you attained? 103 57) What country did you attain your education? 58) With whom do you live? a) _Alone b) _With spouse 0) _With children d) _With relatives 9) _Other (specify 59) What is your Marital Status, are you a) __ Single b) _ Married c) __ widowed d) _ Divorced/separated 60) What is your Employment status, are you a) _employed (full time) b) __ employed (part time) c) _ disabled, unable to work d) _ homemaker e) __ unemployed f) __ retired 9) _student h) ____other (specify): 61) On a scale of 1 (very poor) to 5 (very rich), how would you describe your family’s income/money status: a) _Very less money (very poor) b) __ Less money c) _ Enough money d) _ More than enough money e) __ Lots of money (very rich) 62) Date of Birth_ / / 104 INTERVIEW GUIDE Spanish (Guia de Entrevista Espaiiol) Numero ldentificador Fecha de entrevista INFORMACION DEMOGRAFICA 1) Género: Hombre Mujer 2) Cuanto tiempo a tenido diabetes? 3) Cuantas veces por afio visita al doctor?? 4) Quien mas en la familia tiene diabetes? (abuelos, padres, hermanos/ hermanas, hijos) MEDICAIONES 5) Toma usted inyecciones de insulina? (1) Si (2) No (3) NA 6) Toma usted pastillas / tabletas para el diabetes? (1) Si (2) No (3) NA a) Usted tiene problemas o dificultades en tomarse sus tabletas para el diabetes al tiempo que debe tomarlas? (1) Si (2) No (3) NA b) Si contesto si a 6b, Que hace?: (1) Tomarla después (2) Se espera hasta la préxima ves que se la debe tomar (3) Otro (especifique) 7) Toma otros medicamentos? CONTROLANDO SU DIABETES 8) Que tan seguido se mide la glucosa en la sangre cuando esta en casa? 9) Se Ia mide usted mismo/a? Quien le ayuda a medirse la glucosa en la sangre? 10) Que interviene o causa dificultades en medirse la glucosa en la sangre cuando esta en su casa? a) No se hacerlo b) Me duele c) No me gusta d) Otro (especifique) 11)Sigue alguna dieta especial? lnducir: que es lo que hace, describamelo. Sigue estas indicaciones: a) Todo el tiempo b) a veces c) nunca 12) Hace ejercicio? a) Que hace para ejercicio? b) Cuanto tiempo Io hace? c) Cuantas veces por semana lo hace? 13) Me puede decir que es el diabetes? 105 Guia de entrevista basada en preguntas sobre la investigacion. Preguntas para la entrevista basadas en Ias preguntas de la investigacion: I) Como facilitan o suprimen los elementos culturales y sociales su manejo del diabetes? Estructura 14) aCémo describe usted su vecindad? (lnducir: es seguro, peligroso, agradable) 15) Piensa usted que su cuidado del diabetes y su control es peor o mejor por el Iugar en donde usted vive? (lnducir: aCémo seria el cuidado y el control si viviera en otro Iugar? Deme un ejemplo.) Antecedentes familiares y la diabetes 16) Si contesto que alguna otra persona en su familia tiene diabetes, pregunte: Cémo piensa que es diferente para usted que su familiar que tenia/tiene diabetes? Relacion con la familia 17) Cuando se dio cuenta por primera ves que tenia diabetes, quien en su familia le ayudo y en que manera fue esa ayuda? 18) Cuales diferentes respuestas recibio cuando le dijo a su familia que tenia diabetes? (lnducir: Me puede dar un ejemplo? Le dieron apoyo? Como le ayudaron a controla su diabetes?) 19) Cuando necesitaba ayuda para cuidar a su diabetes, con quien volteaba para ayuda y apoyo? (lnducir: familia, amigos, vecinos, doctor?) How do you subjects values and behaviors influence self-care practices of diabetes? Comportamientos/Maneras 20) Como le ha cambiado la vida el diabetes? Que cosas hace diferente ahora? lnducir: después ser diagnosticado con diabetes, como ha cambiado su rutina diaria? 21) Como el diab‘etes le ha afectado Ia interaccién con sus amigos? 22) Que le han dicho es importante para controlar su diabetes? lnducir: que opina usted sobre eso? Creencias y Valores 23) Que son algunas de las cosas que hace bien en controlar su diabetes y porque? lnducir: cual hace usted mejor? 24) Describa algunas cosas que no hace bien. lnducir: Que dificultad tiene para hacerlo bien? 25) Que ventajas si es que las hay, ve usted en controlar su diabetes? 26) Que opina usted sobre la funcién de la medicina en el control del diabetes? Y Que Opina usted sobre la iuncién de la comida en el control del diabetes? lnducir: Piensa usted que uno es mas importante que el otro? 106 Actitudes (Barreras y Facilitadores) 27) Que hace diariamente para cuidarse a si mismo y a su diabetes? lnducir: ejercicio, medicamentos, tomar clases sobre el diabetes Que piensa usted es la mejor manera de cuidarse? 28) Que Ie gustaria hacer para estar saludable? 29) Cuales son algunas de las cosas que le ayuda a controlar su diabetes? 30) Hay algunas comidas o otras cosas que usted cree que le ayudan con su diabetes? lnducir: Cuales son y como le ayudan? 31) Que le detiene para cuidarse? lnducir: Cuales son algunas dificultades que tiene en controlar su diabetes? 32) Que es lo mas dificil para usted para controlar su diabetes? 33) Que es lo que Ie gusta o no le gusta de Iugar donde consigue sus servicios médicos? 34) Que piensa usted es el papel que debe jugar su doctor 0 el centro de diabetes en ayudarle con su diabetes? How does location influence the aspects of diabetes self-care practices? Availability of resources (physical activity, medical assistance, dietary education) 35) En donde y de quien aprendio a cuidarse? (lnducir: que tipo de informacion obtuvo) 36) De que organizaciones o grupos obtuvo informacién I’Jtil? (lnducir: clinica, doctor, amigos, y en que manera fue util?) 37) Cual ha sido el recurso mas L'Itil para usted? 38) Ha tornado clases sobre el diabetes? lnducir: Si no, Sabe usted si hay educacién sobre el diabetes disponible para usted? 39) Alguna otra casa sobre su diabetes que me quiera decir? 107 The Brief Acculturation Rating Scale for Mexican Americans-ll Modified by Julie Plasencia to include items 13-17. (5) Muchisimo, casi todo el tiempo (4) Mucho o muy frequente (Mainous et al.,LModeLapo (2) Un poquito o a veces ( 1) (Nada) 40) Usted habla Espanol 41) Usted habla Inglés 42)Le gusta hablar Espafiol 43) Se asocia con Anglos 44) Le mista ver peliculas en Inglés d—L—L—b—L-‘F—4 NNNNNN 030000000000 «b-h-h-R-h-k 45) Le gusta ver programas en la television que sean en espafiol 010101010101 46) Le @318 ver peliculas en Espafiol 47) Le gusta leer en Espafiol 48) Escribe (como cartas) en Inglés 4444 [ONION 00000000 «b-h-h-b 49) Sus pensamientos ocurren en el idioma 01010101 Inglés 50) Sus pensamientos ocurren en el idioma 1 Espafiol N GD h 01 .b 51) Sus amigos recientes son Anglo 1 2 3 Americano U'I 52) Usted platica con amigos y parientes en 1 2 3 4 el pais de su origen 53) Usted platica con amigos y parientes en 1 2 3 4 estados unidos 54) Usted usa remedios caseros / hierbas 1 2 3 4 medicinales para curar cuidar enfermedades Su pais de origen/ origen étnico: Mexico Puerto Rico Dominican Republic Cuba Argentina Columbia Peru Guatemala El Salvador Costa Rica United States Educaclon 55. Cuantos anos consecutivos ha vivido en Estados Unidos? 108 56. Cual es el grado mas alto de educacién que obtuvo? 57. En que pais consiguio su educacion? 58. Con quien vive ahora? 1. Solo 2. _Con esposa/esposo 3. _Con Hijos 4. Con parientes 5. _Otro (especifique) 59. Cual es su estado civil, es 1. _ Soltero/a 2. _ Casado/a 3. Viudo/a 4. _ Divorciado/a o Separado/a 60. Cual es su estado de empleo, es empleado (tiempo completo) empleado (medic tiempo) incapacitado, no puede trabajar ama de casa __ desempleado jubilado estudiante Otro (especifique) @NQP‘PWPT‘ 61. En una escala de 1 (muy pobre) a 5 (muy rico), como describe el ingreso de su familia? Muy poco dinero (muy pobre) Menos dinero Suficiente dinero Mas que suficiente dinero Mucho dinero (muy rico) 62. Fecha de nacimiento / 109 24-Hour Dietary Recall 5-Step Approach Getting started I Break the ice I Explain why the assessment is being done I Reassure the subject this will be kept confidential USDA 5- -Step Approach Quick List - Collect a list of foods and beverages consumed the previous day I What was the lst thing you ate after you got up yesterday? 0 Avoid terms like breakfast or lunch I Record only food at this time; don’t worry about portion sizes until later I Allow extra space for adding things later I Do NOT interrupt 2. Forgotten Foods — Probe for foods forgotten during the Quick List I Your turn to talk I Probe with open ended questions (how, what, describe) I Don't forget... o Condiments 0 Beverages 0 Alcohol 0 “Little bites” of food I Frequently missed foods 3. Time 8 Occasion - Collect time and eating occasion for each food I Review the day to them I Ask the subject to tell you the time of day each food was eaten I Ask if there are additions or corrections 4. Detail Cycle - For each food, collect detailed description, amount, and additions. Review 24- hourday I Obtain 4 kinds of info about each food/beverage Kind of food/Beverage 0 Fresh, frozen, canned o Skim, 2%, whole I Preparation of food 0 Fried or baked 0 Ingredients added I Portion size of food 0 Participant may underestimate so use models or examples 0 Make sure EVERY item has some measuring unit I How served 0 Butter, gravy, or cream added? I If you are not sure about a food, ask the participant to describe it to you 0 For example, Joe tells you he has a Gatorade® every morning after breakfast 0 Find out what is a Gatorade®... I Is it a drink? I An energy bar? Get details (color, ingredients, etc) 0 Your mom’s BBQ is not going to be the same as his/her mom’s I Record dietary supplements or vitamins/minerals I Record any herbal or home remedies 5. Final Probe - Final probe for anything else consumed I Remember... 0 Double-check name on each dietary assessment form 0 Check for completeness 110 24-Hour Recall Sheet Q1. How many times/week do you eat meals with your family? Q2. How many times/week do you eat breakfast? Time of the Day Food Items Amount/Portion What were you doing? Where were you eating? “Do you have a problem with digesting fluid milk?” yes or no ”Was this a normal day?” yes or no 111 Historial de Allmentos Consumldos por un Dia Comenzando I Rompe el hielo I Explica porque este colectando esta informacion I Asegura Ia persona que esta informacién sera confidencial USDA 5 Step Method (Método de 5 pasos) 1. Lista inmediata - Colecciona una lista de comidas y bebidas consumidas el dia pasado. I Que fue la primera cosa que comio ayer cuando se levanto? o Evita palabros come desayuno y almuerzo Anota solo Ias comidas, después anotaras Ias porciones I Deja espacio para agregar mas informacién después I No interrumpas 2. Comidas olvidadas — Pregunta sobre estas comidas durante la lista inmediata. Es tu turno para hablar I Examina con preguntas abiertas (como, que y describe) I No olvides... o Condimentos o Bebidas 0 Alcohol 0 “pequenas mordidas" de comidas I Comidas frecuentemente olvidadas 3. Tiempo y ocasion — Colecciona tiempo y ocasion para cada comida. Repite el dia a la persona Pregunta el tiempo del dia que cada comida fue consumida I Pregunta si hay algo adicional o si hay que corregir algo 4. Detailes — Para cada comida, colecciona descripciones con detalles y agregaciones. Revisa el dia. I Obtén 4 tipos de informacién para cada comida y bebida I Tipo de comida / bebida o Fresca, congelada, en Iata o Leche entera 0 sin grasa I Preparacion de comida o Frito 0 al horno o lngredientes agregados I Tamafio de la porcién o Participante pueda menospreciar, usa modelos o ejemplos o Asegurate que cada comida tenga una unidad medidora o cantidad I Come fue servido 0 Con mantequilla, crema, salsa I Si no estas segura sobre que es una comida, pide al participante que te lo describa 0 Por ejemplo, José te dice que se toma una fresca cada manana o Pregunta a que se refiere cuando dice fresca I Es una bebida? I Consigue detalles (color, ingredientes, etc.) o Una comida conocida no siempre esta hecha igual I Anota cualquier suplemento, vitaminas o minerales Anota cualquier hierba o remedios caseros que tomen 5. Ultima examinacién — Has una ultima examinacion por cualquiera otra cosa consumida. I Recuerda... o Revisa que el nombre este correcto en la forma o Revisa que tengas la informacién completa 112 Historial de Allmentos Consumldos por un Dia P1. Cuantas veces por semana comes la comida con la familia? P2. Cuantas veces por semana desayunas? Tiempo del dia Comidas Porciones Que actividad estabas haciendo? En que Iugar lo comiste? Tienes problemas para digestionar leche? (si 0 no) Este fue un dia normal para usted? (si 0 no) 113 APPENDIX F: LABORATORY DATA ABSTRACTION FORM Relation of acculturation to glycemic control and self-management of diabetes in Hispanic Adults Study Site: Date Abstracted: Subject I.D.: Reviewer: Supervising Physician: Date of Birth: / / Date of diagnosis: _ _/_ _/_ _ _ _ Duration of disease _ No. of years Type of insurance: None (0) Medicare (1) Medicaid (2) ___Private HMO (Mainous et al.) PPC (4) Number of clinic visits in the past year Number of hospitalizations in the past year Family History: 1. Diabetes Mellitus _N(0) _Y(1) _Father(1) _Mother(2) _Grand Parent(Mainous et al.) _Sibling(4) 2. Coronary Art Dz _N(0) _Y(1) _Father(1) _Mother(2) _Grand Parent(Mainous et al.) _Sibling(4) Social History: 3. Tobacco _N(0) _Y(1) packs per day 4. Alcohol _N(0) _Y(1) Last drink 5. Exercise _N(0) _Y(1) 114 6. Pop w/ sugar_N(0) _Yll) Physical Examination: (for past year or at least one date prior to most current available) (feet and inches) eight (pounds) Laboratory Data: (for past year or at least one date prior to most current available) 1c Cholesterol 7. Any medical problems besides diabetes as noted on chart _N(0) _Y(1) High Blood pressure Heart disease Kidney problems Overweight Eye Problems Nerve Problems Other (specify) 115 APPENDIX G: CODEBOOKS FROM RESEARCHER (PLASENCIA) AND RESEARCH ASSISTANT (MU RTHA) Code book of Interview questions and frequent responses (Julie Plasencia) 13) Can you tell me what diabetes is? Code It Description Number 13-1 9 don’t know 13-2 4 some understanding, no scientific explanation 13-3 4 can offer more detail, some scientific explanation 13-4 10 no specific explanation 13-5 1 pain in the body 13-6 1 no answer 13-7 1 psychological 13-8 1 participant gets sick more often 13-9 1 sugar leaking 13-10 1 blood turns into water 13-11 1 bad diet habit 13-12 1 "susto" (fright) 13-13 1 family history 13-14 1 high sugar 13-31 4 has to do with blood 13-32 1 can lead to death 13-33 1 need to take care of self 13-34 2 related to pancreas 13-35 2 insulin 13-36 1 doesn't feel diabetes symptoms 13-37 1 unrelated answer 13-39 1 sugar goes up and down 13-40 1 like a cancer, you can't get rid of it 13-41 1 destroys people's lives 14) Describe the community that you live in? Prompt: is it safe, tranquil, dangerous? Code n Description Number 14-1 4 noisy 14-2 8 calm 14-3 5 dangerous 14-3-1 1 hear gun shots 14-3-2 2 drugS 14-3-3 1 prostitution 14-3-4 1 store robbery 14-4 5 safe 14-5 3 busy 14-6 2 social isolation 14-7 2 nice 14-8 7 quiet 116 Code book of interview questions and frequent responses (Julie Plasencia) 14-9 14-10 14-11 14-12 14-13 14-14 14-31 14-32 14-33 14-34 14-35 14-36 44444N444444 fine neighbors know each other regular pleasant stable bad regular very pretty community is economically slow unable to work doesn’t trust new neighborhood difficult to get around because of vision problem 15) How does where you live affect how you can care for managing your diabetes? Prompt: How Is It different from where you lived before? Code Number 15-1 15-2 15-3 15-4 15-5 15-6 15-7 15-8 15-9 15-10 15-11 15-12 15-13 15-14 15p-1 15p-1-1 15p-1-1-1 15p-1-1-2 1 5p-2 1 5p-3 1 5p-4 1 5p-5 1 5p-6 1 5p—7 1 5p-8 1 5p-9 1 5-31 1 5-32 6 4 1 5 3 Description don’t know it does affect it family did not answer question negative activity in neighborhood 12 no affect 1 2 1 1 2 1 1 1 1 2 3 1 8 2 1 1 1 1 1 1 1 1 was doing drugs current is better than before live more natural in Mexico senior community with health care availability normal going upstairs is exercise feel more calm diabetes will always be there would be different if living somewhere else improvement from current safe calm no difference may be different improvement in health positive effect if financial situation would change, not place if there's more people it would be more boring current is worse than before less people quiet feels unsafe diabetes affected everything in life 16) If they have relatives who had diabetes ask: How do you think having diabetes Is different for you compared to your family member with diabetes? 117 Code book of Interview questions and frequent responses (Julie Plasencia) Code Number 16-1 16-1-1 16-1-1-1 16-1-2 16-1-2-1 16-1-2-2 16-1-3 16-1-4 16-1-4-1 16-1-4-2 16-1-5 16-1-6 16-2 16-2-1 16-3 16-3-1 16-4 16-5 16-6 16-8 16-10 16-11 16-12 16-13 16-14 16-31 16-33 16-34 16-36 16-37 16-38 16-39 Description 7 different 2 family 2 family member is less physically active 2 not as advanced as own 2 eye sight, own 1 amputations, own 2 don't see family 8 family's more advanced than own 1 eye sight 1 family member is on dialysis 1 different generation 1 he's younger than family member 3 not different 1 following the same treatment 3 don't know 3 they live elsewhere 4 more difficult to control own vs. family 1 complications 1 duration of diabetes 3 family member takes care of diabetes 2 no relatives w/ diabetes 2 family member has type 1 diabetes 1 family member followed strict 1 diabetes onset later in life 1 lack of consistency with diabetes self management 1 doesn't feel sick from diabetes 1 no answer 1 helps parents care for diabetes 1 was young when family member had diabetes 1 family member is overweight 1 feels weight loss helped control own diabetes 1 family member doesn't know what diabetes is 17) When you first found out you had diabetes, who was the most helpful and how? Code Number 17-1 17-1-1 17-1-2 17-1-3 17-1-4 17-1-5 17-2 17-2-1 17-2-1-1 17-2-2 17-2-2-1 17-2-2-2 n Description 12 doctor 3 provide medication 3 provide advice 2 provide help for diet 1 explained what it was 1 explained what was happening 12 family 4 spouse 1 helps remind about shots and medicine 3 children were helpful 2 provided help for doctor appointments 1 provided help for medication 118 Code book of interview questions and frequent responses (Julie Plasencia) 1 7-2-2-3 17-2-2-3-1 1 7-2-3 1 7-2-4 1 7-2-4-1 1 7-2-4-2 1 7-2-4-3 1 7-2-4-4 1 7-2-5 1 7-2-6 1 7-2-7 1 7-3 1 7-4 1 7-4-1 1 7-5 1 7-6 1 7-7 1 7-8 1 7-8-1 1 7-8-2 1 7-9 2 1 2 4 1 1 1 1 2 2 1 4 2 1 1 1 1 4 1 -‘N provided help for diet did not like foods offered children were not helpful sibling sister is a nurse moral support provided advice on foods explained complications parent spouse provides most support unable to provide knowledge of disease nobody provide knowledge of disease diet acceptance of diseases provide knowledge of self-management health insurance made health care possible clinic staff provides support provide medication put myself in god's hands 18) Describe the different responses you received when you first told your family you had diabetes? Prompt — Can you give me an example? were they supportive of it? Did they help In your diabetes management? If so, how? Code n Description Number 18-1 7 lack of concern from family 18-2 6 family 18-2-1 8 advice 18-2-3 3 family member became upset/sad 18-2-3 1 family member offered knowledge for support 18-2-4 1 offered support 18-2-5 1 encouragement 18-3 3 no support from family 18-4 5 lack of knowledge to offer support 18-5 1 scared 18-6 5 surprised 18-6-1 1 nobody else in family has had it 18-7 1 not surprised, expected participant to get Dm 18-8 2 no concern 18-9 3 family is not in same location 18-10 1 take medicine 18-11 1 family did not understand why participant got Dm 18-12 1 reminded him about grandmother with diabetes 18p-1 13 support from family 18p-1-1 1 remind to see doctor 18p-1-2 3 offered advice on foods 18p-1-3 1 remind to take medicine 18p-2 1 took diabetes classes w/ family member 119 Code book of interview questions and frequent responses (Julie Plasencia) 19) When you need help with your diabetes, to whom do you turn to and how do they respond? Prompt — friends, family, doctor Code Number 19-1 19-1-1 19-1-2 19-1-3 19-1-4 19-1-5 19-1-6 19-1-7 19-1-8 19-2 19-2-1 19-3 19-4 19-4-1 19-4-1 -1 19-4-1 -2 19-4-1 -3 19-4-2 19-4-3 19-4-4 19-4-4-1 19-4-5 19-4-6 19-4-6-1 19-5 19-5-1 19-6 19-7 19-8 19-9 19-10 19-1 1 19-12 19-13 19-14 19-15 19p-1 20) Describe how having diabetes has changed your life. What do you do differently now? Description 10 Doctor 1 1 2 1 1 1 1 1 1 1 1 asks about diet asks about self-glucose monitoring prescribe medication set up appointments doctor has more patience adjust medication doctor uses diabetes as to why his leg hurts feels like doctor doesn't listen Hospital not helpful don't know how hospital helps confusion about treatment 11 family 6 1 444444mm4444444mmm4fl44 spouse gives medicine cooks offers knowledge about disease children lack of knowledge to offer support sibling offers knowledge about disease offer advice on foods parent offers support inends friends offers support at work offer food to correct condition doesn't need help government financial support self clinic literature (pamphlets) check sugar watch diet/food do exercise feels like burden support b/c of work environment Prompt: after being diagnosed with diabetes? How has your daily routine changed? Code It Description Number 20-1 3 everything 20-1-1 1 lost evthing 120 Code book of interview questions and frequent responses (Julie Plasencia) 20-2 20-2-1 20-2-2 20-2-3 20-2-4 20-3 20-4 20-4-1 20-4-2 20-4-3 20-4-4 20-4-5 20-5 20-6 20-6-1 20-7 20-8 20-8-1 20-8-2 20-8-3 20-8-4 20-9 20-10 20-1 1 20-12 20-13 20-13-1 20-1 4 20-31 20-32 20-33 20-34 20-35 20-36 20-37 20-38 20-39 20-40 20p-1 20p-1 -1 20p-1 -2 20p-2 20p-2-1 20p-3 20p-4 20-41 20-42 20-43 20-44 20-45 20-46 2 family care for granddaughter care for wife wife children no cure for diabetes 12 change in diet 4 eat less 2 can't eat sweets 1 drink more water 2 don't drink alcohol anymore 1 avoid greasy foods 1 cannot do same things 1 work 2 not able to work anymore 1 accident, hit by semi-truck 3 exercise 1 cannot walk 2 tiredness 1 pain in feet 2 less physically active than before 2 weight loss 3 causes sadness/depression negatively impacted socially no change kidney complications less tolerating eye sight complications change in character sexually depression disease is an inconvenience disability care for self more easily angered quit smoking other condition causes depression/sadness volunteers to get mind off health diet more salads stay away from sugar no change in daily routine slower paced routine everything is bothersome noise, is bothersome giving self shots blood glucose self monitoring disrupts work try to control as much as possible complains of head aches and sore joints taking medicine d—b-L—L—L 4444N444Nw4444444m44444m44m4 121 Code book of Interview questions and frequent responses (Julie Plasencia) 21) How has having diabetes changed how you act with friends? Code n Description Number 21-1 7 lack of social network 21 -1-1 1 no friends after marriage 21-1-2 2 don't associate with friends 21-1-3 6 don't have friends 21 -2 18 no change 21 -3 1 family 21-3-1 4 only have family for support 21 -3-2 2 spouse 21 -3-3 1 children 21-3-4 1 doesn’t rely on family for support 21 -3-5 1 family structure broke down after death of grandparents 21 -4 2 supportive 21-4-1 1 give advice 21 -4-2 1 offer diet foods 21 -5 4 change in diet habits in social setting 21 -6 2 each individual has own problems to deal with 21 -7 1 friendship is independent of disease 21 -8 2 easily angered with people 21-9 2 keeps to self 21 -10 1 tires easily when a round people 21-11 1 get mad for not drinking alcohol 21-12 1 don't drink alcohol 21-13 1 gets agitated at work more easily 21 -14 1 feels hopeless 21 -31 1 change in attitude 21 -32 1 found who real friends were upon diabetes onset 22) What have you been told Is Important in taking care of your diabetes? Prompt: How do you feel about that? Code It Description Number 22-1 1 Dr. Suggestions 22-1-1 2 take care of self 22-1-2 1 tells of possible consequences 22-1-3 2 eye sight, blindness 22-1-4 1 bones start hurting 22-2 1 feel bad 22-3 3 complications 22-3-1 1 needs glasses 22-3-2 1 care for eyes 22-4 1 lack of money 22-4-1 1 doesn't have money to buy glasses 22-5 22 diet/food 22-5-1 3 avoid sweets 22-5-2 3 avoid greasy foods 122 Code book of Interview questions and frequent responses (Julie Plasencia) 22-5-3 22-6 22-7 22-8 22-9 22-1 0 22-1 1 22-1 2 22-1 3 22-1 4 22-31 22-32 22-33 22p-1 22p-1 -1 22p-2 22p-2-1 22p-3 22p-3-1 22p-4 22p-5 22p-6 22p-7 22p-8 22p-9 22p-1 0 22p-1 0-1 22p-1 1 22p-1 2 22p-1 3 22p-1 4 22p-1 5 22p-1 6 22p-1 7 22p-1 8 22p-1 9 22p-20 22p-21 22p-22 23) Describe some of the things you do well about managing diabetes and why? Prompt: 1 1 1 1 7 2 2 1 1 2 2 1 1 1 1 1 1 1 6 1 1 1 1 1 4 1 1 1 1 1 1 1 1 1 2 1 1 1 eating more vegetables 10 exercise amputations lose life nothing medicine care for feet control sugar can lead to death living calm lose weight self-monitoring blood glucose affects blood pressure clinic support Doctor support nurses support good mentally disabled good for one's health be more kind to people it's correct difficult to follow all indications difficult to follow diet difficult to follow diet because of work don't consider the indications diet is more expensive support from family is positive influence medicine keeps sugar in control it's important overweight makes sugar high feels unorganized about diabetes routine could use someone reminding about diabetes care scared of complications hard to cook differently taking medicine can be unpleasant doesn't want to hear about it Which of these do you do best? Code Number 23-1 23-1-1 23-1-2 23-1 -2-1 23-2 23-3 1 1 1 1 1 Description take care of self don’t drink less driving tired vision Doctor's suggestions 14 Diet 123 Code book of Interview questions and frequent responses (Julie Plasencia) 23-3-1 2 vegetables 23-3-2 5 eat less candy/sweets 23-3-3 3 less soda 23-3-4 1 eat less 23-3-5 1 avoid greasy foods 23-3-6 1 avoid sugary drinks 23-4 6 Exercise 23-4-1 2 walking 23-5 9 Take Medicine 23-6 1 lack of hope 23-7 5 self-monitoring blood glucose 23-8 2 don't do anything 23-9 1 daily organization 23-10 1 being calm 23-11 1 feels good 23-12 3 control diabetes 23-14 2 nothing 23-31 1 having more patience 23-32 1 rely on family for support 23-33 1 eating breakfast 23-34 1 weight management/loss 23-35 2 drink water 23-36 1 follow routine 23-37 1 salads 23-38 1 what is currently doing 23-39 1 life is boring 23-40 1 no longer working 23-41 1 fighting it 24) Describe some things that you don’t do well. Prompt: What makes it difficult for you to do this well? Code n Description Number 24-1 7 exercise 24-1-1 3 walking 24-2 8 diet/food 24-2-1 1 lack of money 24-2-2 1 difficult not to eat ice cream 24-2-3 1 foods that contain sugar 24-2-4 1 doesn't like salads 24-2-5 1 drinking regular soda 24-2-6 1 potato chips 24-2-7 1 cakes 24-3 6 medicine 24-3-1 3 forget to take medicine 24-4 1 unrelated answer 24-4-1 1 takes care of self, does well 24-4-1-2 1 work 24-4-1-3 1 water 24-4-1-4 1 no soda 124 Code book of Interview questions and frequent responses (Julie Plasencia) 24-4-1 -5 24-4-1 -6 24-5 24-5-1 24-5-2 24-6 24-6-1 24-7 24-8 24-9 24-1 0 24-1 1 24p-1 24p-1 -1 24p-1 -2 24p-2 24p-2-1 24p-2-2 24p-2-3 24p-3 24p-4 24p-5 24p-6 24p-7 24p-8 24-1 2 24-1 3 24-1 4 24-31 24-31 -1 1 1 3 2 1 2 1 1 4 1 2 1 1 1 1 2 1 2 1 1 1 1 1 2 1 1 1 1 1 1 no sweets no sugar self-glucose monitoring forget, self-glucose monitoring problems with vision disability causes difficulties disability, forgetfulness mistreat people nothing don't sleep well don't know no answer diet loves Mexican food Loves Italian food exercise walking is difficult, swelling time desue pain in whole body watching others eat (ice cream) negative social pressure craving for sweets undesirable foods are readily available participant likes to bake forgetful nerves get agitated making it to doctor's appointments likes sweet breads sweet breads are a weakness 25) What If any, are the advantages to managing your diabetes? Why? Code Number 25-1 25-1 -1 25-2 25-3 25-4 25-5 25-5-1 25-5-2 25-6 25-6-1 25-6-2 25-6-3 25-7 25-8 25-9 25-1 0 1 1 1 1 8 2 2 1 1 1 2 1 1 2 5 1 Description telling others telling others to get check ups doesn't know where he got it from gets upset at self live longer family see own children grow up be a good spouse medicine only medicine helps get off medication not have to take insulin shots better life scared of complications live healthier avoid amputations 125 Code book of interview questions and frequent responses (Julie Plasencia) 25-1 1 25-1 2 25-1 3 25-1 4 25-32 25-32 25-33 25-34 25-35 25-36 25-37 25-38 25-39 25-40 25-41 25-42 25-42-1 25-43 25-44 25-45 1 avoid eye damage, further eye damage 2 helps stick to diet 1 prevent kidney damage 1 felt better at lower weight 1 nervousness contributes to overweight 1 be happy 1 not be burden to family 5 feel better 1 no anxiety 1 see the doctor regularly 2 don't know 1 don't get up all night for bathroom 1 wish it would go away 3 keep diabetes controlled 1 getting blood glucose down 1 being calm 1 being calm helps do everything right 1 work is a barrier to managing diabetes 1 cannot take food to work, construction sites 2 no advantages 26) What do you think the role of medicine Is In managing diabetes? And What do you think the role of food Is In managing diabetes? Prompt: Do you think that one is more Important than the other? Code It Description Number 26-1-1 2 don't know much 26-1-10 1 prevent from getting higher or lower [blood sugars] 26-1-11 1 damages other organs 26-1-12 5 good 26-1-2 1 listen to doctor 26-1-3 10 to control diabetes 26-1-4 2 taking medicine on time 26-1-5 2 keep you alive 26-1-6 1 prevent hospitalization 26-1-7 1 tired of taking medicine 26-1-8 2 necessary 26-1-9 2 medicine works 26-1-10 I prevent diabetic coma/shock 26-1-12 1 helps enough 26-1-11 1 has effect 26-2 4 don't know 26-2-1 2 likes a lot of foods 26-2-2 3 cultural foods considered barrier 26-2-2-1 1 tortilla 26-2-2-2 1 rice 26-2-2-3 1 brought up eating those 26-2-2-4 1 need meat in diet, otherwise individual angers 26-2-3 3 control, manage food intake 26-2-4 live longer 126 Code book of Interview questions and frequent responses (Julie Plasencia) 26-2-5 1 cooking differently, w/ less fat 26-2-6 1 lack of money 26-2-6-1 1 lack of money to buy vegetables 26-2-7 3 food is positive 26-2-8 1 family provides food 26-2-9 1 necessary 26-2-10 1 diabetes should only eat fruits, vegetables, and water 26-2-11 3 food is negative 26—2-11-1 1 all food is contaminated 26-2-12 1 food is better than medicine 26-2-13 1 greasy foods cause sugar to be high 26-2-14 1 follow diet 26-2-1 5 2 eat less 26-2-16 2 control diabetes 26-2-17 1 eat more vegetables 26-2-18 1 feels bad when eating greasy foods 26-2-19 1 if you follow diet it controls diabetes 26-2-20 1 depends on who is cooking 26-3 2 don't know 26-3-1 4 medicine is more important 26-3-2 2 food also important 26-3-3 2 feels bad to have it uncontrolled 26-3-4 18 both are important 26-4 5 food and medicine work together 26-5 3 food is more important 27) What do you do on a daily basis to take care of yourself or your diabetes? Prompt: exercise, medical care, diabetes education school? What do you think is the best way for you to take care of yourself? Code n Description Number 27-1 1 eat oats 27-1-1 4 eat less 27-2 8 exercise 27-2-1 1 dance 27-2-1-1 1 helps build self-esteem 27-2-2 4 walk 27-2-2-1 1 walking causes fatigue 27-3 11 take medicine 27-4 I cook with less lard 27-5 5 nothing 27-6 4 self-monitoring blood glucose 27-8 2 eat breakfast 27-9 3 try to avoid certain foods 27-9-1 I avoid desserts 27-10 1 not think about being on diet 27-11 1 rest 27-12 2 eat salad 27-13 3 work 27-14 1 follow routine 127 Code book of interview questions and frequent responses (Julie Plasencia) 27-31 27-32 27-33 27p-1 27p-2 27p-2-1 27p-2-2 27p-3 27p-4 27p-5 27p-6 27p-7 27p-8 27p-9 27p—1 0 27p-1 1 1 —L—L 9 1 1 4 4 1 2 1 1 1 1 1 not having problems drinking a lot of water continue what currently doing less sugar in diet follow the diet eat vegetables eat fruit follow doctor's indications take medicine need reminder to take medicine continue what currently doing self-monitoring blood glucose care for self first versus family controlling nerves sit around exercise 28) What would you like to do to be healthy? Code Number 28-1 28-1 -1 28-1 -2 28-2 28-2-1 28-3 28-4 28-5 28-6 28-6-1 28-7 28-8 28-8-1 28-46 28-9 28-9-1 28-9-2 28-1 0 28-1 1 28-1 2 28-1 3 28-1 4 28-31 28-32 28-33 28-34 28-35 28-36 28-37 28-38 444444444444444¢p44444G444xj4444 Description can't do things because of diabetes parties drink beer unrelated answer not have diabetes live healthy see children graduate see grand children family listen to parents when younger get new pancreas wants to talk to dietitian will bet better explanation plan meals better exercise difficult because of disability lack of desire to exercise be naturalist take care of self more with time not have high blood pressure not have depression conscious of medicine fix pain in legs be physically able to get around be younger government should find a way to cure diabetes have life back have strength back work again 128 Code book of Interview questions and frequent responses (Julie Plasencia) 28-39 28-40 28-41 28-42 28-43 28-44 28-45 28-46 28-47 loss of since diabetes follow diet relax lose weight can only control it doesn’t understand food pyramid not having to work everything currently doing go out more 29) What helps you In taking care of yourself? Prompt: What are some things that helped you manage your diabetes? Code Number 29-1 29-1 -1 29-1 -2 29-1 -3 29-2 29-3 29-4 29-5 29-6 29-7 29-8 29-1 0 29-1 1 29-1 2 29-1 3 29-1 4 29-31 29-32 29-32-1 29-33 29-33-1 29-33-2 29-33-3 29-33-4 29-33-5 29-33-5-1 29-34 29-35 29-36 29-37 29-38 29-39 29-40 29-41 29-42 29-43 3 1 2 1 1 2 1 1 1 6 1 3 5 1 1 1 1 1 1 4 1 3 1 1 1 1 1 1 1 1 1 1 1 1 1 1 Description foods less sugar less sweets water be more careful be without stress or worries be calm walking fresh air outside medicine taking food and medicine in orderly manner don't know exercise feeling happy when it's controlled diet having a routine using a notebook to write down self-monitoring blood glucose unrelated answer tires easily to do things family reminding to keep up with routine offers support thinking about future grandchildren reminding of what not to do parent's complications from diabetes parent lost a kidney depends on others to get around clinic stay away from pop caring for grand daughter own will power looking at self in the future not taking medicine or eat right doesn't help control diabetes wants to control it to avoid complications didn’t exercise past winter wants to be 130Ibs when she is 50 129 Code book of Interview questions and frequent responses (Julie Plasencia) 29-44 29-45 29-46 29-47 29-48 29-49 29-50 29-51 29-52 29-53 knows is not currently healthy eat natural being controlled feels normal not taking drugs not drinking alcohol not over eating sleeping a lot not having problems controlling nerves as much as possible nothing due to vision problem 30) Are there any specific foods or other things that you believe help you with your diabetes? Prompt: What are they? Tell me how they/it helps you? Code Number 30-1 30-1-1 30-1- 30-1- 30-1- 30-1- 30-1- 30 1- 30-1- 30-1- 30-1- __1 --1 --1 30-1-1-16-1 30-1-1-16-2 30-1-1-17 30-1-1-18 30-1-1-19 30-1-1-20 30-1-1-21 30-1-2 30-1-8 30-1-9 30-1-10 30-1-11 30-1-12 30-2 30-2-1 30-2-2 n Description 1 facilitator 3 foods 10 fruits 1 watermelon cantaloupes strawberries berries salads non-greasy foods rice cakes have no calories energizes tuna fish putting something good into body feels good low fat cottage cheese low fat yogurt diet foods pepper reason doesn't have a lot of diabetes doctor told her it cuts the disease cucumber lefluce tomato oatmeal black coffee didn't feel bad baked foods boiled foods steamed foods beans ~ tacos foods are not helpful ice cream cake 44N444N444N44N44444N444444wm444 130 Code book of Interview questions and frequent responses (Julie Plasencia) 30-3 30-4 30-4-1 30-4-2 30-4-3 30-5 30-6 30-7 30-8 30-9 30-1 0 30-1 1 30-1 2 30-1 3 30-1 4 30-31 30-32 30-33 30-34 30-35 30-36 30-37 30-38 30-39 30-40 30-41 30-42 30-43 30-43-1 30-43-2 30-44 30-45 30-46 30-47 30-48 1 1 1 d-F-‘dw-‘d-‘NN-‘N-‘NN-‘A-‘d-‘dAddd-‘N-‘Nd never been on diet 14 vegetables green beans green peas carrots vitamins eat less no answer none adjusting to diet is difficult all foods causes diarrhea needs change in medication eating vegetables keeps away from eating junk food change in eating habits previously a vegetarian feel good to be around people feel less scared afraid of falling afraid of people not knowing how to help depends on family for support eat Jell-O drink more water stopped eating tortillas feel better doesn't have diabetes symptoms gets full foods help not to overeat avoids starch because it turn into sugar rice noodles feels healthier wants to be vegetarian, but lacks money help maintain eating regimen keeps sugar low feels light 31) What keeps you from taking care of yourself? Prompt: What are some of the difficulties in managing your diabetes? Code n Description Number 31-1 1 medicine 31-2 4 barrier, foods 31-2-1 1 cake 31-2-2 1 cookie 31-2-3 1 diet pop 31-2-4 1 bread 31-3 9 nothing 31-3-1 1 just take insulin 31-4 2 self 31-5 2 family 131 Code book of Interview questions and frequent responses (Julle Plasencia) 31-5-1 31-5-2 31-5-3 31-6 31-7 31-8 31-9 31-10 31-11 31 -1 1-1 31p-1 31-12 31-12-1 31-12-2 31-12-3 31-12-4 31-12-5 31-13 31-14 31-31 31-32 31-33 31-34 31-34-1 31-34-2 31-35 31-36 31-37 31-37-1 31-38 31-39 31-40 31-41 1 2 1 2 1 3 1 1 1 1 1 2 2 1 1 1 1 1 1 1 1 1 1 1 1 1 2 1 1 1 1 1 1 disabled son forget about self to care for family daughter won't give her greasy foods and she finds that difficult eating greasy foods physically unable to get around not having enough money forgetful in taking medicine having diabetes is inconvenient when sugar gets high physically unable to get around selecting foods stress family causes stress being safe feels like burden to family relatives don't not offer support work causes stress news on TV is stressful fear of talking to strangers lack of exercise memory problems laziness lack of money receives social security and food stamps not enough money to buy right foods nothing detains them eafingless "gula" (what makes fat people fat) can't stop eating harmful food leaving too quickly what you eat cooking for whole family makes it difficult to avoid food being scared 32) What Is the most difficult thing about controlling your diabetes? Code Number 32-1 32-1 -1 32-1 -1 -1 32-1 -2 32-1 -3 32-1 -4 32-2 32-3 32-3-1 32-3-2 32-3-3 32-4 32-5 n 4 2 1 1 1 1 1 8 1 1 1 1 2 Description physical barrier vision problems cannot read cannot walk cannot cook for self not managing own affairs can't do things he/she wants to do following diet work is a barrier to following diet can't stop over eating doesn't always know what they get lack of transportation don't know 132 Code book of interview questions and frequent responses (Julie Plasencia) 32-6 32-6-1 32-7 32-8 32-8-1 32-9 32-10 32-1 1 32-12 32-13 32-14 32-31 32-32 32-33 32-34 32-34-1 32-35 32-36 32-36-1 2 2 1 1 1 2 2 3 1 1 2 1 1 1 1 1 1 1 1 self monitoring blood glucose pinch/poke time getting blood work afraid of what results show insulin shots nothing medicine no change in eating habits difficult to change eating habits in social settings exercise laziness trying to forget about having diabetes can't drink beer not eating meat always tempting to eat meat diabetes is always going to be there controlling my sugar body feels bad 33) What Is It about where you go for health care that you like or dislike and why? Code Number 33-1 33-2 33-3 33-3-1 33-4 33-5 33-6 33-7 33-8 33-9 33-1 0 33-1 1 33-12 33-13 33-14 33-31 33-32 33-33 33-34 33-35 33-36 33-37 33-38 33-39 33-40 33-41 33-42 7 7 1 1 3 7 1 3 4 1 3 2 1 1 3 1 1 1 1 1 3 1 1 1 1 1 1 Description positive, good treatment Good doctor barrier cost of other health care Clinic everything is fine don't need an appointment dislike waiting like the nurses normal close to home doctor takes care of any problem important to get blood work for other medical condition no problems with it feel like family thank god for having the doctor doctors are more concerned doctor is direct about their health likes everybody that works at the clinic tried other doctors, still likes this clinic feels they take good care feels they take good care of children can't get pain medicine for other disorder in neck feels if she had private insurance she could get pain medication, Vicodin trying to build muscle on back to improve pain in neck doesn't want to end up on a wheel chair fighting neck disorder for 10 years and is motivated to fight 30 more 133 Code book of Interview questions and frequent responses (Julie Plasencia) 33-43 33-44 33-45 33-46 33-47 33-48 33-49 33-50 33-51 33-52 33-53 _S-L—L—b—L-L—t—L—L-A—L feels comfortable doesn't like that people talk about the place don't follow through not everyone has insurance no answer Routine check up keep track of diabetes dislikes seeing more than one doctor feels it would be more personal to have one doctor they listen attention they give 34) What do you think the role of doctor should be In helping you with your diabetes? Code Number 34-1 34-2 34-1-1 34-1 -2 43-1 -3 34-3 34-4 34-5 34-6 34-7 34-8 34-9 34-10 34-1 1 34-12 34-13 34-14 34-31 34-32 34-33 34-34 34-35 34-36 34-37 34-38 34-39 34-40 34-41 34-42 34-43 34-44 3445 4 1 6 2 1 2 1 1 2 4 3 1 2 3 2 2 2 1 1 1 1 1 1 1 1 1 1 1 2 1 1 1 Description Give advice ask questions telling what to do and what not to do what not to eat lose weight more information more attention blood pressure checked laboratory blood work prescribing medication difficulty in following advice of doctor individual is barrier to allowing doctor to help doctor is doing all he can don't know advising on how to take medicine control diabetes check blood sugar levels make sure I understand what is happening taken care of clinic treated well explain what can happen keep alive educate tell one they have it help feel better quickly attended doctor having a chart they are doing their part was never sent to specialist as promised doctor can only follow procedure being honest to patient 35) Where and from when did you learn how to take care of yourself? 134 Code book of Interview questions and frequent responses (Julie Plasencia) Code Number 35-1 35-1 -1 35-1 -2 35-1 -3 35-1 -4 35-2 35-2-1 35-3 35-4 35-4-1 35-4-2 35-4-3 35-5 35-5-1 35-6 35-6-1 35-6-1 -1 35-6-2 35-6-3 35-7 35-8 35-9 35-10 35-1 1 35-1 1-1 35-1 1 -2 35-1 1 -3 35-1 2 35-13 35-14 35-31 35-31 -1 35-32 35-33 Description 12 Doctor 1 1 2 1 6 2 3 1 1 1 1 1 1 7 4 1 2 2 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 Only doctor seen teaching about complications gave medicine indications for care Clinic teach to do self-monitoring blood glucose self diabetes classes diet take care of self care for cuts stopped caring for self child came home sick from military family parent advice to take care of self sibling spouse learned when parents got diabetes learned from hospital seeing complications on other people is motivating fnends work deal with diabetic patients know what they can and cannot eat helps to focus on self nurses dietitian Being Mexican is barrier Doctor in another location best doctor they have had unrelated answer literature picked up at clinic 36) What organizations, groups individuals do you get helpful Information from? Code Number 36-1 36-2 36-3 36-4 36-5 36-6-1 36-6-2 36-6-3 36-6-4 36-6-5 444440,)44‘0 Description none Clinic hospital programs offered at hotels insurance information Hospital diabetes classes food medicine psychological advantages of the illness disadvantages of the illness 135 Code book of Interview questions and frequent responses (Julie Plasencia) 36-6-6 36-6 36-7 36-8 36-9 36-9-1 36-9-2 36-10 36-1 1 36-1 2 36-13 36-1 3-1 36-14 36-31 36-32 36-33 1 motivating to over come it 1 TV 2 literature at clinic 1 Medicaid diabetes classes 3 family 2 sibling 1 parent 10 doctor 1 walk for diabetes 1 friends 1 diabetes program at clinic 1 volunteering for the program 1 difficult to know what the right foods are but not have enough money 1 feels she wouldn't worry about high sugar if she had the right foods 1 diabetes magazine in the mail 1 American blind association 37) What has been the most helpful resource or thing for you? Code Number 37-1 37-2 37-3 37-3-1 37-4 37-4-1 37-4-1 -1 37-4-2 37-4-3 37-4-3-1 37-4-3-2 37-5 37-5-1 37-6 37-7 37-8 37-9 37-9-1 37-10 37-1 1 37-1 2 37-1 2-1 37-1 2-2 37-13 37-14 37-31 37-32 37-33 37-34 n Description 11 medicine 3 Insurance 8 clinic 1 allowed them to see doctor when money was scarce 6 family 1 parents 1 take care of each other 3 sibling 2 children 1 happiness of children 1 offer help when she is doing bad 8 doctor advice eafingless getting out of house nobody job knowing what goes on the tray helps self publications that apply to diabetes seeing what family not take care of self government provided with wheel chair provided with bed being able to check sugar levels having equipment to check sugar levels garlic grateful for the insulin given don't know seeiqu family in the future A—L—kd—fi—L—Ld—L—h—Ad—L—L—LN—L 136 Code book of Interview questions and frequent responses (Julie Plasencia) 38) Have you taken classes on diabetes? Prompt: if no, Do you know If diabetes education is available to you? Code Number 38-1 38-2 38-3 38-3-1 38-3-2 38-4 38-5 38-6 38-7 38-8 38-9 38-1 0 38-10-1 38-1 1 38-12 38-13 n Description 19 no classes taken 10 no knowledge of classes available 10 yes, have taken class/es 1 disability doesn’t allow to return to classes I didn't listen in diabetes class because was in denial 18 does have knowledge of classes available 2 concern with cost of classes 1 lack of transportation 1 went with family member I taught other about diabetes 1 has been told she knows more than the classes offer 1 eats certain foods 1 zucchini, radish, cabbage, carrots was raised having enough milk, cheese, fish, shrimp, cucumber, watermelon, 1 corn, melons was raised poor but natural 1 reads magazines A 39) Anything else you want to tell me about your management of diabetes? Code Number 39-1 39-2 39-3 39-4 39-5 39-6 39-7 39-8 39-9 39-10 39-1 1 39-12 39-1 3 39-14 39-31 39—32 39-32-1 39-33 39-34 39-35 39-36 39-37 39-38 n Description 1 no warning of diabetes 1 doesn't know why he got it 9 no further comments 1 medicine does work 1 care of self 2 care depends on self I worried about taking insulin shots 1 feels knowledgeable, but unable to follow through 1 diabetes is difficult 2 exercise 2 keep up with medication 1 wish it was gone 1 government should find medicine alternative to shots 1 doesn't know why can't walk 1 taking diabetes seriously 1 being Mexican 1 foods like tortillas and pop 1 food from work is good for self 1 not to be in denial 1 forgetful with medicine 1 has all resources necessary 1 easy to manage with organization 1 requires one puts desire into it 137 Code book of Interview questions and frequent responses (Julie Plasencia) 39-39 39-40 39-41 39-42 39-43 39-44 39-45 39-46 39-47 39-48 d-L—L—L—b-L—L-L-L—L requires that one puts everything on their part for themselves I have received the best help doesn't have discipline not eating things that are bad follow procedures take medicine go to appointments remember patients have feelings listening does more good for some doesn't drink alcohol because of diabetes 138 Code book of interview questions and frequent responses (Katie Murtha) 13) Can you tell me what diabetes ls? Code Number 313-13-1 313-13-2 313-13-3 Description don't know some understanding, no scientific explanation can offer more detail, some scientific explanation 14) Describe the community that you live In? Prompt: Is it safe, tranquil, dangerous? Code Number 313-14-1 313-14-2 313-14-3 313-14-4 301 -14-15 314-14-16 315-14-17 320-14-18 320-14-19 316-14-20 325-14-21 331 -14-1-15 330-14-22 330-14-23 330-14-24 310-14-25 328-14-26 Description noisy calm dangerous safe drug activity pleasant, nice quiet difficult to get up stairs in house busy stable problems with robbing on weekends old place friendly not familiar with new community /people difficult to see new surroundings good neighbors very pretty 15) How does where you live affect how you can care for managing your diabetes? Prompt: How is It different from where you lived before? Code Number 313-15-1 313-15p-1 313-15p-1-1 313-15p-1-1-1 313-15p-1-1-2 313-15p-2 301-15-15 301-15-16 307-15-17 304-15p-15 304-1 5p-15-1 308-15p-16 320-15-18 327-15-19 327-15-19-1 327-15p—17 309-15-20 330-15-21 Description don't know would be different improvement from current safe calm no difference Irritating Upsetting no effect dangerous neighborhood in past irritation causes high blood sugar drug use in past currently problems with using stairs in house live with family member who is diabetic help each other with treatment would not be different possibly could be different feel unsafe 139 Code book of Interview questions and frequent responses (Katie Murtha) 3331 5-22 330-1 5p-18 3331 5-23 31 o-1 5-24 310-1 324-1 310-1 3242 31315-243 31 o-1 5-24-4 31 1-15-25 31 7-1 5p-19 319-1 5p-20 326-1 5-26 feel uncomfortable with surroundings easier to trust people in old community feel uncomfortable with body better in Mexico lard, junk food in California worked outside gained weight in California healthy culture/lifestyle nurse close by at all times difference in financial situation better neighborhood in the past more people would be more boring 16) If they have relatives who had diabetes ask: How do you think having diabetes Is different for you compared to your family member with diabetes? Code Number 313-16-1 313-16-1-1 313-16-1-1-1 313-16-2 301-16-15 301-16-16 307-16-1-1-15 307-16-1-1-16 34-16-17 303-16-18 304-16-19 304-16-1-17 304-16-20 308-16-21 308-16-1-18 302-16-22 320-16-1-1-19 320-16-1-1-20 322-16-23 325-16-1-1-21 329-16-1-1-22 329-16-1-1-23 331-16-1-1-24 330-16-24 311-16-1-1-25 328-16-25 Description different family brother less active not different Have longer More complications better diet control lack of knowledge easier hard to control in more danger family more complications fear of complications take better control of self family procrastinates don't know brother has different kind of diabetes family controls well with medications easier for patient family has had longer family controls blood sugar family has problems family has different type of diabetes affects people differently depending on their age family more strict diet family does not take care of diabetes 17) When you first found out you had diabetes, who was the most helpful and how? Code Number 313-17-1 313-17-1-1 313-17-2 313-17-2-1 Description doctor provide medication family wife helps remind about shots and medicine 140 Code book of Interview questions and frequent responses (Katie Murtha) 301-17-2-15 301-17-2-16 307-17-1-15 315-17-15 303-17-2-17 304-17-2-18 318-17-16 302-17-18 316-17-19 325-17-20 309-17-2-19 329-17-2-20 330-17-21 310-17-22 310-17-23 317-17-24 wife kids give advice unrelated answer sister gave advice/support no one family didn’t know what was clinic warn of complications mother helped with diet understood how disease was affecting life workers at Clinic nurses took to the hospital 18) Describe the different responses you received when you first told your family you had diabetes? Prompt - Can you give me an example? were they supportive of lt? Did they help in your diabetes management? If so, how? Code Number 31 3-1 8-1 31 3-1 8-2 31 3-1 8-2-1 301 -1 8-2-1 5 307-1 8-15 303-1 8-1 6 303-1 8-2-16 303-1 8-2-1 7 304-1 8-1 7 308-1 8-18 323-1 8-19 320-1 8-2-18 325-1 8-2-19 325-1 8-2-20 309-1 8-2-21 329-1 8-2-22 330-1 8-2-23 330-1 8-20 330-1 8-21 330-1 8-22 330-1 8-23 31 0-1 8-24 317-18-2-15-15 317-18-2-16-15 Description no response family advice lack of support not surprised scared supportive took to classes surprised family of ignorant of disease sad family supports each other difficult for family to accept always wondering about reason for physical appearance emotionally supportive warned of complications calm patient was in denial about condition people don’t understand that disease affects many facets of life patient had fear of condition if learn about condition, can handle it worried scold if eat the wrong things take care of patient 19) When you need help with your diabetes, to whom do you turn to and how do they respond? Prompt - friends, family, doctor Code Number Description 141 Code book of Interview questions and frequent responses (Katie Murtha) 313-19-1 313-19-2 313-19-2-1 313-19-3 301-19-15 301-19-16 314-19-17 314-19-18 303-19-19 303-19-19-1 304-19-20 304-19-21 323-19-22 320-19-1-15 327-19-23 327-19-24 327-19-25 309-19-26 329-19-1-16 329-19-1-17 329-19-1-18 330-19-16-1 330-19-27 310-19-28 312-19-29 317-19-30 Doctor Hospital not helpful don't know how hospital helps confusion about treatment wife kids clinic pamphlets/books/flyers fnends helpful sister give advice mother increase medication husband help with medications help with cooking brothers says to check sugar says to watch diet says to exercise patient doesn't like to burden children provide emotional support government provides money no one is patient with the patient 20) Describe how having diabetes has changed your life. What do you do differently now? Prompt: after being diagnosed with diabetes? How has your daily routine changed? Code Number Description 31 3-20-1 everything 313-20-2 family 313-20-2-1 care for granddaughter 313-20-2-2 care for wife 313-20-3 no cure for diabetes 313-20-4 food 313-20-4-1 can't eat sweets 313-20-5 cannot do same things 301 -20-15 employment 301-20-15-1 doesn’t work anymore 307-20-16 no change 315-20-4-15 no greasy food 303-20-1 7 lost weight 304-20-18 negative, socially 308-20-19 exercise more 318-20-4-15 no alcohol 323-20-4-17 portion control 302-20-20 can't exercise 302-20-20-15 feet hurt 320-20-21 get more tired 142 Code book of Interview questions and frequent responses (Katie Murtha) 320-20-22 320-20-23 31 6-20-24 31 6-20-4-1 8 31 6-20-4-1 9 322-20-25 322-20-26 325-20-4-20 325-20-27 325-20-28 327-20-29 309-20-30 329-20-1 -1 5 330-20-46 330-20-4-21 31 0-20-47 31 1-20-4-22 31 2-20-48 31 7-20-49 31 7-20-4-23 31 7-20-51 31 7-20-1 -1 6 31 9-20-52 31 9-20-53 eyes getting bad no change in daily routine take medication drink more water eat more solid foods volunteer more no smoking time of meals check sugar be careful with cuts/scratches change in daily routine change in character slowed client down a lot live each day to the fullest eat breakfast get sad about condition eat less changed patient sexually an inconvenience don't cook what used to can't stand for long periods of time every little thing will cause problems easily angered feet swell 21) How has having diabetes changed how you act with friends? Code Number 31 3-21 -1 31 3-21 -1-1 31 3-21 -1 -2 21 -2 303-21 -1 5 323-21 -1 6 320-21 -1 7 322-21 -18 322-21 ~18-1 325-21 -1 9 309-21 -20 309-21 -21 329-21 -22 330-21 -23 330-21 -24 330-21 -25 330-21 ~26 31 0-21 -27 31 2-21 -28 31 7-21 -29 326-21 -30 Description lack of social network no friends after marriage don't associate with friends no change friends helpful friends get mad because no alcohol friends more concerned with each other's health don't hang out as much get tired easier difficult to go out to eat/drink with friends friends in own world friendships have changed unrelated answer found out who "real" friends are created a barrier between patient and friends friends have their own families to worry about family separated after grandparents passed away get angry more often doesn't drink as much alcohol gets angrier easier people don’t help each other out 22) What have you been told Is Important in taking care of your diabetes? Prompt: How do 143 Code book of interview questions and frequent responses (Katie Murtha) you feel about that? Code Number Description 313-22-1 Dr. Suggestions 313-22-1-1 take care of self 313-22-1-2 tells of possible consequences 31 3-22-1 -3 blindness 313-22-1-4 bones start hurting 313-22-2 feel bad 31 3-22-3 complication 313-22-3-1 needs glasses 313-22-4 lack of money 313-22-4-1 doesn't have money to buy glasses 22-5 diet/food 22-6 exercise 301 -22-15 prevent complications 315-22-16 take medication 315-22-17 control blood sugar 303-22-18 feel good 323-22-19 feel scared 302-22-20 don't know/haven't been told 320-22-21 maybe needs someone to keep organized with treatment 316-22-22 don't follow timing restrictions with treatment 322-22-23 lose weight 322-22-23-1 will not have to use insulin 322-22-24 accepted that has to live with restrictions 322-22-25 stop drinking 322-22-26 stop smoking 325-22-5-15 eat red meat 325-22-27 wants to do the opposite 327-22-28 hard to cook differently 329-22-29 tired of hearing about it 330-22-30 foot care 330-22-46 have to face it/deal with it 310-22-47 stay calm 31 0-22-5-16 eat more 311-22-48 agree with it 312-22-49 it's not possible 312-22-5-17 no greasy food 312-22-5-18 no candy 317-22-50 family reminds 31 7-22-51 feel irritated 319-22-52 it's important 326-22-5-19 eat vegetables 328-22-5-20 barrier, work 23) Describe some of the things you do well about managing diabetes and why? Prompt: Which of these do you do best? Code Number 313-23-1 Description take care of self 144 Code book of interview questions and frequent responses (Katie Murtha) 31 3-23-1 -1 31 3-23-1 -2 313-23-1-2-1 23-2 23-3 23-4 23-5 307-23-3-1 5 31 4-23-3-1 6 31 4-23-3-1 7 31 4-23-3-1 8 303-23-1 6 308-23-1 7 31 8-23-3-1 9 320-23-3-20 322-23-4-1 5 325-23-1 8 327-23-1 9 329-23-20 31 0-23-21 31 2-23-22 31 7-23-24 31 9-23-3-21 326-23-3-22 328-23-3-23 don't drink less driving tired vision Doctor's suggestions Diet Exercise Take Medicine No sweets less sugar vegetables no soda monitor blood sugar organized no fatty foods portion control control weight take insulin go to doctor's appointments Have plenty of time staying peaceful nothing spend time with family eat regularly lots of water eat salads 24) Describe some things that you don’t do well. Prompt: What makes it difficult for you to do this well? Code Number Description 31 3-24-1 exercise 313-24-2 diet/food 31 3-24-3 medicine 313-24-4 unrelated answer 313-24-4-1 takes care of self, does well 313-24-4-1-1 take medicine 31 3-24-4-1 -2 work 313-24-4-1 -3 water 313-24-4-1-4 no pop 313-24-4-1-5 no sweets 313-24-4-1-6 no sugar 301 -24-2-15 cultural preferences 301-24-2-16 Italian food preferences 301 -24-1-15 physical restrictions 314-24-2-17 resisting desserts 31 5-24-15 don’t know 303-24-16 peer pressure 304-24-1-16 not enough time 304-24-2-18 not enough money 308-24-2-19 fear of weight gain 31 8-24-1 7 sleep 145 Code book of interview questions and frequent responses (Katie Murtha) 302-24-18 31 6-24-2-20 322-24-2-21 322-24-2-22 325-24-2-23 325-24-2-24 327-24-2-25 327-24-2-25-1 327-24-2-25-2 309-24-3-1 5 331 -24-1 9 330-24-20 330-24-21 330-24-22 31 0-24-23 31 7-24-2-1 7 31 7-24-2-1 8 326-24-24 326-24-25 328-24-2-19 lack of desire information about sugar confusing resisting pop difficult at work resisting chips likes to bake planning meals time consuming has to cook for family forget nothing checking blood sugar sight barriers difficult to depend on others don't always treat people well eafingless cooking without grease become irritated forget to do something resisting sweets 25) What If any, are the advantages to managing your diabetes? Why? Code Number 31 3-25-1 31 3-25-1 -1 31 3-25-2 31 3-25-3 25-4 25-5 307-25-15 31 4-25-16 324-25-1 7 308-25-18 308-25-19 31 8-25-20 302-25-21 321 -25-22 321 -25-23 322-25-24 327-25-25 309-25-26 329-25-27 330-25-5-15 330-25-5-16 330-25-28 330-25-28-1 5 330-25-28-1 6 31 0-25-29 31 0-25-30 31 1-25-46 Description telling others telling others to get check ups doesn't know where he got it from gets upset at self live longer family better diet feel better keep it under control prevent complications stay healthy seeing the doctor regularly unrelated answer be able to stop taking medicine prevent using insulin less bathroom breaks it'll get better lose weight no advantages be there for spouse see kids grow up difficult to be positive about disease diabetes takes a physical, mental, and emotional tole diabetes destroys entire life be happy not give trouble to anyone health improves 146 Code book of Interview questions and frequent responses (Katie Murtha) 312-25-47 can keep blood sugar under control 317-25-48 get dietary instruction from clinic 319-25-49 don't know 326-25-50 get calm 326-25-50-15 helps patient do everything right 26) What do you think the role of medicine Is In managing diabetes? And What do you think the role of food Is In managing diabetes? Prompt: Do you think that one Is more important than the other? Code Number Description 313-26-1 prevent from getting higher or lower [blood sugars] 313-26-1-1 don't know much 313-26-2 don’t know 313-26-2-1 likes a lot of foods 313-26-2-2 cultural foods 31 3-26-2-2-1 tortilla 31 3-26-2-2-2 rice 313-26-2-2-3 brought up eating those 313-26-3 don't know 301-26-3-1 5 medicine 307-26-2-15 control 307-26-3-16 both important 314-26-1-15 damage organs 31 4-26-2-1 6 positive 314-26-3-17 food 315-26-1-16 stay well 324-26-2-17 prevent complications 303-26-1-17 take regularly 308-26-2-18 cost barrier 318-26-2-19 no role 323-26-1-18 makes stomach upset 323-26-3-18 medicine 316-26-1-19 it's good 316-26-2-20 it helps 316-26-3-18 depends on prescriptions 322-26-1-20 don't know 325-26-1-21 prevent diabetic shock/coma 325-26-2-21 portion control important 327-26-2-22 worsens it 329-26-2-23 junk food is good food 331-26-2-24 depends on who is cooking 330-26-1-22 make life easier 330-26-2-25 pay attention to how foods are good and bad for you 330-26-2-26 can't enjoy as many cultural dishes 330-26-3-19 even out both 310-26-1-23 unrelated answer 310-26-2-27 unrelated answer 311-26-1-24 it's necessary 311-26-2-28 it's necessary 31 2-26-1-25 it works 147 Code book of interview questions and frequent responses (Katie Murtha) 31 7-26-1-26 31 7-26-2-29 31 9-26-2-30 326-26-2-46 27) What do you do on a daily basis to take care of yourself or your diabetes? Prompt: exercise, medical care, diabetes education school? What do you think is the best way for have to take on time have to eat too little don’t eat sweets feel bad when eat a lot of grease you to take care of yourself? Code Number 31 3-27-1 31 3-27-1 -1 31 3-27-p1 31 3-27-p2 301 -27-15 301 -27-p2-15 307-27-1 6 31 4-27-1 7 31 4-27-18 31 5-27-1 9 324-27-20 303-27-p2-16 308-27-15-1 323-27-21 323-27-22 302-27-23 320-27-24 320-27-p2-1 7 321-27-p2-18 321 -27-25 321 -27-26 322-27-27 325-27-28 327-27-p2-1 9 327-27-p2-20 327-27-p2-21 309-27-29 309-27-30 330-27-46 31 0-27-p2-22 31 1-27-p2-23 31 1-27-47 31 1-27-48 31 9-27-49 326-27-p2-24 328-27-p2-25 328-27-50 Description eat oats use to eat big bowl of cereal, not anymore don't drink too much sugar follow the diet exercise follow medical advice nothing different medicine breakfast check blood sugar follow routine take medication barrier, physical pain drink water eat salad cook with less lard eat right put self first lose weight portion control less sweets monitor blood sugar with food and insulin take insulin eating exercise control blood sugar cook food separate from family's food eat fruit still trying to figure that out don't eat things that cause damage continue treatment eat less eat every three hours rest not have problems stay calm work every day 28) What would you like to do to be healthy? Code Number Description 148 Code book of interview questions and frequent responses (Katie Murtha) 31 3-28-1 31 3-28-1 -1 31 3-28-1 -2 31 3-28-2 31 3-28-2-1 301 -28-1 5 301-28-1-15 307-28-1 6 31 4-28-1 7 31 4-28-18 31 5-28-1 9 303-28-20 304-28-21 308-28-22 308-28-22-1 5 31 8-28-23 323-28-1-16 302-28-24 302-28-24-15 320-28-25 321 -28-26 322-28-27 327-28-28 329-28-29 31 0-28-30 31 2-28-46 317-28-16-15 326-28-47 328-28-48 29) What helps you In taking care of yourself? Prompt: What are some things that helped can't do things because of diabetes parties drink beer unrelated answer not have diabetes working facilitator: family exercise relax take time for self take medication live healthy control diabetes talk to dietitian simple explanation not have other conditions exercise for a long time lose weight barrier: lack of desire no pain be able to get around getyounger plan meals better should have listened to parents when younger not eat anything that causes damage be a naturalist barrier: physical restrictions spend time with family do everything can do you manage your diabetes ? Code Number 31 3-29-1 31 3-29-1 -1 31 3-29-1 -2 31 3-29-2 301 -29-15 301-29-15-1 307-29-1 6 31 4-29-1 7 31 5-29-18 324-29-1 9 303-29-20 308-29-21 308-29-22 308-29-23 323-29-24 323-29-25 320-29-26 Description foods less sugar less sweets be more careful exercise barrier: need help no soda don't know not having problems family support clinic own willpower fear of complications desire for weight loss follow diet take medication Have a routine 149 Code book of Interview questions and frequent responses (Katie Murtha) 321 -29-27 325-29-28 327-29-29 309-29-30 329-29-1 -1 5 331 -29-1 -1 6 330-29-46 330-29-47 31 0-29-48 31 2-29-49 31 2-29-50 31 7-29-51 328-29-52 rest often desire to see family grow up not feeling sick being able to handle stress smaller portions water being able to see fighting losing eyesight motivated by children don't smoke don't take drugs happy when it's controlled control nerves 30) Are there any specific foods or other things that you believe help you with your diabetes? Prompt: What are they? Tell me how they/it helps you? Code Number 313-30-1 313-30-1-1 313-30-1-1-1 313-30-1-1-2 313-30-1-1-3 313-30-1-1-4 313-30-1-1-5 313-30-2 313-30-2-1 313-30-2-2- 313-30-3 313-30-1-2 307-30-1-1-15 307-30-1-1-16 307-30-1-1-17 307-30-1-1-18 314-30-2-15 304-30-1-15 304-30-2-16 308-30-2-17 323-30-1-1-19 323-30-1-1-19-15 302-30-15 320-30-1 -1 -20 320-30-1 -1 -21 320-30-1 -1 -22 320-30-1 -1 -23 316-30-1-1-24 321-30-2-18 322-30-1-1-16-15 325-30-1-1-16-16 327-30-1 -1 -25 327-30-1-1 -26 Description facilitator foods fruits watermelon cantaloupes strawberries berries not helpful foods ice cream cake never been on diet didn't feel bad water vegetables dairy salads greasy foods no diabetes symptoms tortillas starchy foods dried rice fewer calories none baked/boiled food olive oil get used to diabetic food less sweets vitamins currently all foods keeps client from eating junk food clean toxins from body green beans black coffee 150 Code book of Interview questions and frequent responses (Katie Murtha) 329-30-1-1-27 331-30-1-1-28 331-30-16 310-30-1-1-29 310-30-1-1-30 310-30-1-1-29-15 312-30-1-1-46 312-30-1-1-46-15 312-30-17 317-30-1-1-47 317-30-1-1-48 328-30-1-1-16-15 hospital food oatmeal feel better in long run pepper jello cuts out a lot of disease everything natural pear, cucumber, apple, lettuce, tomato feel good/light eat less tea helps control blood sugar 31) What keeps you from taking care of yourself? Prompt: What are some of the difficulties In managing your diabetes? Code Number 313-31-1 313-31-2 313-31-2-1 313-31-2-2 313-31-2-3 301-31-15 301-31-15-1 301-31-15-1-1 301-31-16 307-31-1 7 307-31-18 314-31-19 315-31-20 315-31-21 324-31-22 303-31-23 303-31-24 304-31-25 320-31-26 320-31-27 320-31-28 316-31-29 316-31-2-15 321-31-30 322-31-1-15 325-31-1-16 327-31-2-16 327-31-2-17 330-31-46 312-31-47 31 7-31-48 Description medicine barrier, foods cake cookie diet pop worry family not supportive distrust exercise lack of desire don't know greasy foods unrelated answer nothing stress work lack of money lack of time trying to be responsible all of the time questioning self myself selecting foods difficult to get around don't like having to take medication when traveling difficult to take insulin when sick food is good cook for entire family being scared/fear the gula always puts others first 32) What Is the most difficult thing about controlling your diabetes? 151 Code book of Interview questions and frequent responses (Katie Murtha) Code Number 31 3-32-1 31 3-32-1-1 313-32-1-1-1 31 3-32-2 301 -32-1 5 307-32-1 6 314-32-1 7 31 4-32-1 7-1 31 5-32-1 8 303-32-1 7-2 308-32-19 323-32-20 320-32-21 320-32-22 321 -32-1 7-3 322-32-23 325-32-15-15 327-32-1 7-4 329-32-24 330-32-25 330-32-25-1 31 0-32-26 31 1-32-27 31 1-32-28 31 2-32-29 326-32-1 7-5 328-32-30 Description physical barrier, vision vision problems cannot read can't do things he wants to do medication exercise diet barrier, work schedule don’t know barrier, holidays getting lazy, denial nothing lack to time fear of blood results control portions poking finger giving self insulin shots fried chicken condition will never go away controlling blood sugar body feels really bad can't walk no alcohol pinching self not being able to exercise not being able to eat meat resisting bread 33) What Is It about where you go for health care that you like or dislike and why? Code Number 31 3-33-1 31 3-33-2 31 3-33-3 31 3-33-3-1 31 3-33-4 307-33-1 5 31 4-33-16 303-33-1 7 308-33-18 308-33-3-1 5 31 8-33-19 321 -33-20 322-33-21 322-33-22 327-33-23 329-33-24 331 -33-25 331 -33-26 330-33-27 Description positive, treat good Good doctor barrier cost of other health care Clinic negative, long waits everything fine personalized care close to residence type of health plan good nurses take care of condition negative, getting shots good to see blood work results negative, don't follow through with stuff likes the routine, regular check-ups anenfion listen to you negative, don't see same doctor each visit 152 Code book of Interview questions and frequent responses (Katie Murtha) 330-33-27-1 31 7-33-28 31 9-33-29 328-33-30 have to tell entire life story each visit don't necessarily have to make an appointment like it a normal amount no answer 34) What do you think the role of doctor should be in helping you with your diabetes? Code Number 31 3-34-1 31 3-34-2 31 3-34-1 -1 301 -34-1 5 31 4-34-1 6 324-34-1 7 31 8-34-18 325-34-1 9 329-34-20 329-34-21 330-34-22 330-34-23 31 0-34-24 Description Give advice ask questions telling what to do and what not to do provide medication anenfion monitor condition unrelated answer friend of the family only follow procedures listen to what the patient says hurts be honest do everything that can for patient to make patient better 35) Where and from when did you learn how to take care of yourself? Code Number 31 3-35-1 31 3-35-1 -1 31 3-35-2 303-35-15 303-35-16 304-35-1 7 304-35-18 302-35-21 320-35-22 325-35-23 31 0-35-24 31 7-35-25 31 9-35-26 319-35-26-15 328-35-27 Description Doctor Only doctor seen Clinic fnends work dietitian nurse self hosphal sister husband class at hospital father says to take care of self wife 36) What organizations, groups Individuals do you get helpful information from? Code Number 31 3-36-1 31 3-36-2 31 3-36-1 5 303-36-16 303-36-1 7 303-36-18 304-36-1 9 Description none Clinic hospital programs community events family fflends clinic diabetic program 153 Code book of Interview questions and frequent responses (Katie Murtha) 308-36-20 31 8-36-21 320-36-22 321 -36-23 325-36-24 330-36-25 31 0-36-26 31 1-36-27 31 1-36-28 31 1-36-29 31 7-36-30 doctor pamphlets television diabetes classes sister American Blind Association doctor food guide pyramid diabetes magazine literature from clinic sparrow hospital 37) What has been the most helpful resource or thing for you? Code Number 31 3-37-1 31 3-37-2 31 3-37-2-1 31 3-37-3 37-4 37-5 303-37-1 5 303-37-1 5-1 304-37-2-1 5 304-37-1 6 308-37-4-1 5 302-37-1 7 320-37-18 325-37-4-1 6 327-37-5-1 5 329-37-4—1 7 31 0-37-4 31 0-37-4-18 31 1 -37-1 9 31 2-37-1 -1 5 31 2-37-20 31 7-37-21 328-37-22 Description medicine Insurance Ingham Medical Plan clinic family doctor job gain knowledge of diet informational resources publications family not taking care of diabetes no one doctor's office sister provide insulin motivation to see family grow up family happiness of children equipment to check blood sugar insulin garlic eafinglessfood don't know 38) Have you taken classes on diabetes? Prompt: If no, Do you know if diabetes education Is available to you? Code Number Description 313-38-1 no classes taken 313-38-2 no knowledge of classes 301-38-15 knowledge of classes 31 5-38-16 classes taken 31 5-38-16-1 receptionist provided 304-38-17 taught people 318-38-18 not sure when classes available 302-38-19 lack of transportation 154 Code book of interview questions and frequent responses (Katie Murtha) 325-38-20 329-38-21 331 -38-22 need more info about classes gotta call a hospital to find out if classes available interested in taking classes 39) Anything else you want to tell me about your management of diabetes? Code Number 31 3-39-1 31 3-39-2 301-39-1 5 307-39-1 6 31 4-39-1 7 31 5-39-18 303-39-1 9 303-39-20 304-39-21 308-39-22 302-39-23 302-39-24 320-39-25 321 -39-26 322-39-27 325-39-28 309-39-29 329-39-30 331 -39-46 330-39-47 330-39-48 31 1-39-49 31 2-39-50 326-39-51 Description no warning of diabetes doesn't know why he got it wish didn't have diabetes should take care of it no answer worried about injecting insulin barrier, cultural food preferences facilitator, job environment don't be in denial about condition helpful to be organized need to take medicine confusion about not being able to exercise difficult to follow through with treatment hard to have diabetes be sure to exercise need something better than insulin shots need to dedicate oneself to fighting disease follow procedures don't drink beer health professionals need to personalize care health professionals need to listen have received the best help patient is problem b/c does not take care of self it's about not eatingtiings that are bad for you 155 BIBLIOGRAPHY 156 BIBLIOGRAPHY Abraido-Lanza, A. F., Armbrister, A. N., Florez, K. R., & Aguirre, A. N. (2006). Toward a theory-driven model of acculturation in public health research. Am J Public Health, 96(8), 1342-1346. American Diabetes Association (ADA), (2006). Standards of medical care in diabetes--2006. Diabetes Care, 29 Suppl 1, S4-42. ADA. (2002). Total Prevalence of Diabetes and Pre-Diabetes. Retrieved 2007, 2007, from http://www.diabetes.org/diabetes-statistics/prevalence.jsp ADA. (2006). Standards of medical care in diabetes-2006. Diabetes Care, 29 Suppl 1, S4-42. Adler, A. |., Stevens, R. J., Manley, S. E., Bilous, R. W., Cull, C. A., & Holman, R. R. (2003). Development and progression of nephropathy in type 2 . diabetes: the United Kingdom Prospective Diabetes Study (UKPDS 64). Kidney Int, 63(1), 225-232. Ahern, J., Grove, N., Strand, T., Wesche, J., Seibert, C., Brenneman, A. T., et al. (1993). The impact of the Trial Coordinator in the Diabetes Control and Complications Trial (DCCT). The DCCT Research Group. Diabetes Educ, 19(6), 509-512. Aldrich, L., & Variyam, J. N. (2000). Acculturation erodes the diet quality of US. Hispanics. FoodReview, 23(1), 51. Armstrong, C. (2006). ADA Releases Standards of Medical Care for Patients with Diabetes. American Family Physician, 74(5), 871. Banister, N. A., Jastrow, S. T., Hodges, V., Loop, R., 8 Gillham, M. B. (2004). Diabetes Self-Management Training Program in a Community Clinic Improves Patient Outcomes at Modest Cost. American Dietetic Association. Journal of the American Dietetic Association, 104(5), 807. Bantle, J. P., Wylie-Rosett, J., Albright, A. L., Apovian, C. M., Clark, N. G., Franz, M. J., et al. (2006). Nutrition recommendations and interventions for diabetes-2006: a position statement of the American Diabetes Association. Diabetes Care, 29(9), 2140-2157. Becker, D. M., Yanek, L. R., Johnson, W. R., Jr., Garrett, D., Moy, T. F., Reynolds, S. S., et al. (2005). Impact of a community-based multiple risk factor intervention on cardiovascular risk in black families with a history of premature coronary disease. Circulation, 111(10), 1298-1304. Beckles, G. L., Engelgau, M. M., Narayan, K. M., Herman, W. H., Aubert, R. E., & Williamson, D. F. (1998). Population-based assessment of the level of 157 care among adults with diabetes in the US. Diabetes Care, 21(9), 1432- 1438. Benoit, S. R., Fleming, R., Philis-Tsimikas, A., 8 Ji, M. (2005). Predictors of glycemic control among patients with Type 2 diabetes: a longitudinal study. BMC Public Health, 5(1), 36. Blanc, M. H., Barnett, D. M., Gleason, R. E., Dunn, P. J., 8 Soeldner, J. S. (1981). Hemoglobin A1c compared with three conventional measures of diabetes control. Diabetes Care, 4(Mainous et al.), 349-353. Blaum, C. S., Velez, L., Hiss, R. G., 8 Halter, J. B. (1997). Characteristics related to poor glycemic control in NIDDM patients in community practice. Diabetes Care, 20(1), 7-11. Boeckner, L. 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