The Diabetes Exemplar
Although a number of useful studies have been conducted on clinical interventions for Type 2 diabetes (e.g., Diabetes Prevention Program, 1997-2002; United Kingdom Perspective Diabetes Study, 1987-2001), the literature is disappointingly sparse on communication interventions to change behavior related to the prevention and treatment of diabetes in diverse populations. Unlike our experience with mammography and large campaigns, we found few published examples of systematically evaluated communication interventions for diabetes. Thus, we present diabetes as a challenging opportunity for developers of health communication programs.
Diabetes is a widespread disease that is differentially distributed among diverse populations, and it requires complex and continuing behaviors for prevention and management. In this chapter we review data that illustrate the effects of diabetes on diverse populations; discuss behavioral factors important for the prevention and control of diabetes; review the few studies on communication interventions for the control of diabetes and its various
sequelae in the general population and in ethnic minority populations; and present factors to be considered in developing effective and testable communication interventions for the prevention and control of diabetes in the future.
Five sets of factors make diabetes an ideal exemplar of communication programs that encourage decisions for and the adoption of health-promoting behaviors by members of ethnic minority populations. The first factor is the systemic nature of the disease. Diabetes can affect every organ system of the body and has severe consequences. Second, it is among the most prevalent of all disorders (Diabetes Prevention Program Research Group, 2001) and it has been more prevalent and more virulent among minority ethnic groups. Third, its impact covers the human lifespan. Diabetes affects the very young, adolescents in increasing numbers, adults, and the elderly. Its effects on the body and on physical and mental functioning change with advancing age. Fourth, diabetes is responsive to behavioral interventions. Unlike many other chronic conditions, both preventive and treatment behaviors are of proven effectiveness for avoiding and/or controlling the various insults of diabetes at all times in life (Diabetes Prevention Program Research Group, 2001; Saaddine et al., 2002).
The fifth and final factor concerns the way in which diabetes is experienced by individuals, their family, and their friends. Diabetes means different things to different people, and different things to the same people at different times. The somatic effects of diabetes and its treatment create an ever-changing array of experiences and feared consequences; different behaviors are required to control these unwanted events. Most important, the patient’s perspective on the disease and treatment—his or her representation as to how the disease and the treatment are affecting his or her body— will differ in a number of ways from the perspective held by those not affected. Thus, beliefs about the symptoms and causes of diabetes, the time frames for its consequences, and the procedures and
time frame for its prevention and the control of its adverse consequences differ for medical practitioners who embrace a biomedical perspective on diabetes, patients who hold to cultural and experience-based common-sense beliefs of the disease, and family members and friends whose perspective on diabetes and its control is shaped by cultural knowledge and observation of diabetic persons.
Understanding the various perspectives on diabetes and how they may affect one another is essential to creating communication programs that are effective in changing patterns of behavior to improve diabetes control. The life-span nature of the disorder and the long developmental history for the most common variety of diabetes, Type 2, require that messages address different behaviors at different times. Although some behaviors, such as dietary practices, may be valuable throughout the natural history of the disease, others play a more central role in avoiding the occurrence of diabetes (primary prevention). Still others are important for early detection and treatment (secondary prevention), and still others are needed for the avoidance or control of the dangerous sequelae of the diabetic process (tertiary prevention). Different actions will coincide, therefore, with the different time points in the individual’s life history as well as with different time points in the life span of the disease.
Communication strategies are complicated by the time course of the disease. For example, successfully changing beliefs for better control of blood sugar at an early stage of disease may create belief systems that interfere with the acceptance of messages recommending the adoption of behaviors for controlling risks at later stages of the disease, such as foot care to manage diabetic neuropathy. The common-sense belief systems affecting the performance and self-appraisal of preventive action differ among individuals, change at different stages of the disease, and differ among members of an individual’s social network. As a consequence, programs designed for diabetes control may succeed at some times and in some places, but fail at other times and in other places.
DIABETES AND DIVERSE POPULATIONS
Three sets of concepts and data comprise the “bedrock” for the development of messages and programs for diabetes control from the framework of the biomedical model: (1) physiological concepts and data describing the underlying disease process, (2) data on the consequences of failure to achieve diabetes control, and (3) epidemiological data on disease prevalence, age-related incidence, and environmental causes. Differences among populations can be found in each of these areas, and these differences affect how diabetes is experienced and understood by each group’s members. The translation of disease biology and epidemiology into cultural and individual beliefs may result in common-sense models of diabetes, its sequelae, and prescriptions for prevention that bear only partial resemblance to the models of biomedicine (Garro, 1990, 1995, 1996; Bruyère and Garro, 2000).
Biology and Prevalence in Diversity and Primary Risk
Diabetes is a systemic disorder that can affect many parts of the body. This complex metabolic disorder involves abnormalities in carbohydrate, lipid, and protein metabolism. The absence of insulin, insufficient quantities of insulin, or insensitivity of cellular receptors to insulin results in deficits in the transport of sugars across cell membranes. The result is elevation of blood sugar (hyperglycemia) and the appearance of symptoms such as polyuria or sweetened urine. These symptoms were identified more than 3,000 years ago; Susruta, the “father of medicine in India,” labeled the disorder diabetes mellitus.
Type 1 diabetes, the less common form, affects 5 to 10 percent of diabetics. It is caused by the absence of insulin because of viral destruction of the insulin-producing cells of the pancreas in genetically susceptible individuals (LaPorte, Matushima, and Chang, 1995). In Type 2 diabetes, the form afflicting 90 to 95 percent of diabetics, the pancreas produces insufficient amounts of insulin and/or the cells of critical storage tissue are less responsive to insu-
lin, resulting in the failure of transport of sugars across cell membranes; the net result is elevated blood sugar levels (American Diabetes Association, 2000; Centers for Disease Control and Prevention, 2000a). In addition to being far more common, Type 2 diabetes is slower to develop, usually diagnosed in adults over age 40, and most commonly diagnosed in adults over age 60. The consequences of diabetes, such as blindness, kidney failure, neuropathy, ulceration, and foot amputation, develop over lengthy periods of time and appear later in life. The difference in rate of onset led to using this variable in the statistical formula once used to distinguish Type 1 from Type 2 diabetes (American Diabetes Association, 2000; HeliosHealth.com, 2000; Songer and Zimmet, 1995). This formula is no longer useful because Type 2 diabetes now appears in adolescents, especially in minority populations. As the age of onset differs dramatically across ethnic groups, we can expect that diabetes will be seen as a disease of aging only in those communities where it is late in onset. When Type 2 onset is early in life, individuals may fail to distinguish Type 2 from Type 1 and develop beliefs about the disease incompatible both with its biology and with recommendations for behavioral change.
Diverse groups show substantial differences in the prevalence of Type 2 diabetes and the frequency of various complications, including heart problems and end-stage renal disease (Karter et al., 2002). Higher diabetes rates have been documented in African-American communities across all social categories (Hendricks and Haas, 1991), though prevalence is highest among women (especially those who have been previously diagnosed with gestational diabetes), the elderly, and individuals who have a positive family history for diabetes, who have fewer years of formal education, who have lower incomes, and who live alone (Brancati et al., 1996; Gaillard et al., 1997; Hendricks and Haas, 1991; Lipton et al., 1993; McNabb, Quinn, and Tobian, 1997). Statistical comparisons show non-Hispanic African-Americans to be 1.4 to 2.2 times
more likely to develop diabetes than age-matched non-Hispanic whites (Bonham and Brock, 1985; Carter, Pugh, and Monterrosa, 1996; Harris, 1991; O’Brien et al., 1989; Wetterhall et al., 1992). The rate among African-American women over age 55 (25 percent) is double the rate of white women of similar age (Hendricks and Haas, 1991).
Although the overall picture for Hispanics is similar to that for African-Americans, the epidemiological data clearly indicate the importance of distinguishing among Hispanic populations. Thus, the rates of diabetes are two to five times higher among Hispanics than non-Hispanic whites, controlling for age (Carter, Pugh, and Monterrosa, 1996; Flegal et al., 1991; Gardner et al., 1984; Hamman et al., 1989; Hanis et al., 1983; Samet et al., 1988; Stern et al., 1983), but differ among Hispanics by national origin. Type 2 rates are lowest for Cuban Americans, approximately 16 percent of those ages 45 to 74 (Carter, Pugh, and Montenosa, 1996), and higher for Mexican Americans (24 percent) and Puerto Ricans living in the United States (26 percent). Major predictors of diabetes among Hispanics, namely female gender, lower levels of physical activity, and greater waist circumference (Tucker, Bermudez, and Castaneda, 2000), are similar to those for African-Americans.
Type 2 diabetes is also more prevalent among Asian Americans/Pacific Islanders. For example, rates are three to four times greater among Asian migrants to Hawaii, such as Japanese, Koreans, and Chinese, relative to those not of Asian origin (Carter, Pugh, and Monterrosa, 1996; Hendricks and Haas, 1991; Huang et al., 1996), with the highest prevalence for Filipinos. A similar trend has been noted among Asian-American communities in west coast cities of the United States, where prevalence rates are two to three times the national rate (Fujimoto et al., 1994; Hendricks and Haas, 1991).
The highest rates of Type 2 diabetes have been observed among Native Americans and Alaskan Natives. Prevalence among these groups is often 2.5 and more times greater than among non-Hispanic, age-matched samples (Acton et al., 1993; Carter et al., 1989; Carter, Pugh, and Monterrosa, 1996; Farrell et al., 1993; Freeman
et al., 1989; Stahn, Gohdes, and Valway, 1993; Hendricks and Haas, 1991; Johnson and Strauss, 1993; Martinez and Strauss, 1993; Muneta et al., 1993; Murphy et al., 1992; Rith-Najarian, Valway, and Gohdes, 1993; Schraer et al., 1988; Sugarman and Percy, 1989; Valway, Linkins, and Gohdes, 1993). Native American tribes such as the Pima of Arizona suffer what may be the highest rates in the world, with prevalence rates as high as 50 percent, or 10 to 15 times higher than the overall prevalence of diabetes in the United States.
The differences in diabetes rates in age-matched, white, middle American, and ethnic populations, and the recall of past rates by members of each ethnic community, will affect both the perception of diabetes and trust in those recommending behavioral changes for prevention. If members of ethnic communities see these differences as stigmatizing and caused by intrusions from the “majority” Anglo culture, it can affect their trust and understanding of messengers and messages recommending behavior change, and undermine their sense of efficacy in achieving change for prevention. These differences will be examined later in this section.
Both fixed and alterable lifestyle changes have been identified as risks for diabetes (Black, 2002), though the notion of a fixed factor is more elastic than one might suspect. For example, genetic susceptibility, age (over 45), and family history of diabetes are fixed once known, but family history changes when a family member develops diabetes, and genetic susceptibility can move from unknown to known with genetic testing and counseling. Historical factors, such as having a history of gestational diabetes and giving birth to babies weighing 9 pounds or more, fall within the set of unalterable factors for women for whom this is past history, but they also may indicate the possibility of dietary interventions for avoiding excessive fetal weight gain among women who have not yet given birth.
An estimated 97 million adults in the United States are either overweight or obese, and approximately 75 percent engage in no or only minimal physical activity on a regular basis (National Institutes of Health, 1998; U.S. Department of Health and Human Services, 1996). Smoking cessation, increased physical activity, and dietary regulation are prime targets for intervention, as these changes would reduce weight, lower low-density lipoproteins, increase high density lipoproteins, and improve glucose tolerance. Factors working against such interventions in diverse populations include the adoption of “Westernized” lifestyles, inadequate community and economic resources to access diabetes-safe diets (such as absence and/or high cost of appropriate foods in markets), and some traditional dietary practices. These factors, which are at extreme levels in many diverse communities, may be responsible for increasing rates of obesity in these communities and their disproportionate rates of Type 2 diabetes (Nakamura, 1999).
The same factors—high-fat diets and little physical activity— are likely to be the cause of the recently reported surge in Type 2 diabetes among U.S. children, many of whom are of African-American, Hispanic, or Native American/Alaskan Native descent (Libman et al., 1998; Neufeld et al., 1998; Pinhas-Hamiel et al., 1996; Rosenbloom et al., 1999; Scott et al., 1997). As many as 8 to 45 percent of children newly diagnosed with diabetes have Type 2. Libman and Arslanian (1999) reported that in 1994, 33 percent of the individuals diagnosed with diabetes were 10 to 19 years of age. Children at highest risk have a family history of diabetes, are in the middle to later years of puberty (age 10 or older), and are overweight.
Although much remains to be learned about the interacting processes responsible for the onset of Type 2 diabetes, the correlations among these risk factors and their association with Type 2 diabetes across ethnic groups reinforce the assumption that interventions effective in initiating and maintaining lifestyle changes do reduce the prevalence of this disease (Diabetes Prevention Program Research Group, 2002; Black, 2002).
Social and Cultural Disparities in Medical Consequences of Diabetes
Not only is diabetes more prevalent among diverse populations, but its consequences are more serious. Moreover, the costs are not evenly distributed: They are borne more heavily by ethnic minorities. Compared with their white counterparts, African-American diabetics are much more likely to develop hypertension and cardiovascular disease (Harris, 1990), and twice as likely to suffer from diabetes-related blindness, lower limb amputations, and end-stage renal disease (American Diabetes Association; Harris et al., 1998; Kahn and Hiller, 1974; McNabb, Quinn, and Tobian, 1997). Hispanics are also at significantly greater risk for diabetes-associated illness at the time of initial diagnosis (Hendricks and Haas, 1991; Hoy, Light, and Megill, 1995). Specifically, Hispanics have higher rates of diabetic disease of the retina (retinopathy) than non-Hispanic white diabetics when they are diagnosed (American Diabetes Association, 2000; Haffner et al., 1989; Harris et al., 1993) and are three to seven times more likely to develop end-stage renal disease in comparison to non-Hispanic white diabetics (Carter, Pugh, and Monterrosa, 1996; Hendricks and Haas, 1991; Pugh et al., 1988, 1995).
End-stage renal disease is the only complication of diabetes for which sufficient data are available to compare Asians/Pacific Islanders with other ethnic groups (Carter, Pugh, and Monterrosa, 1996). Although the rates of end-stage renal disease are lower among Asians/Pacific Islanders in comparison to other ethnic minorities, its overall prevalence is still higher than that for non-Hispanic white diabetics (United States Renal Data System, 1993). Diabetic complications are especially prevalent among Native American/Alaskan Native populations: Native Americans with diabetes have significantly higher rates of cardiovascular disease, stroke, end-stage renal disease, lower limb amputations, and diabetic retinopathy (American Diabetes Association, 2000; Carter, Pugh, and Monterrosa, 1996; Hendricks and Haas, 1991; Hoy, Light, and Megill, 1995; Hoy, Megill, and Hughson, 1987; Mor-
bidity and Mortality Weekly Report, 2000; Nelson and Bennett, 1989; Quiggins and Farrell, 1993; Stahn, Gohdes, and Valway, 1993). As the cohort of youngsters projected to be obese and to suffer with diabetes ages, the United States will experience an increase in elderly Type 2 diabetics suffering from cardiovascular disease, diabetic retinopathy, blindness, kidney damage and failure, neuropathy, and foot amputation (American Diabetes Association, 2000).
Diabetes Knowledge, Attitudes, and Behaviors
Four broad sets of factors affect whether and how a person takes action to prevent and control the threats associated with diabetes: (1) beliefs about the recommended action; (2) self-efficacy and related behavioral skills; (3) the social or interpersonal environment; and (4) the wider economic and physical ecology (see discussion in Chapter 2 on theory). The ecological framework provides both opportunities and barriers for action that both facilitate and constrain action-related beliefs, self-efficacy, and social influences. Low-fat and low-sugar foods will not be consumed if they are unavailable or unaffordable. Furthermore, an individual’s behavioral beliefs, sense of efficacy, and social factors will not affect choice of foods if there is no way to identify which foods are inappropriate. Efforts to enhance health through changing individual beliefs and practices must not ignore such contextual factors (Lorig et al., 1999; Gohdes et al., 1996).
Ecological factors aside, can we identify social/cultural and individual beliefs and practices related to diabetes prevention and treatment, and do these beliefs and practices have a direct relationship to behaviors that put individuals at risk for diabetes and its complications? Furthermore, is there evidence to support the hypothesis that the cultural and individual beliefs responsible for prevention behaviors differ among minority ethnic groups? Theories describing the processes underlying individual decisions and actions and models of communication would assert that beliefs about the procedures for the prevention and control of diabetes are
shaped by multiple sources of information (as noted in the discussion of behavioral theory in Chapter 2). We can expect differences among ethnic communities to reflect differences in such exposures. We can also anticipate that the differences most strongly related to behavior and most difficult to change will be cultural and personal beliefs about treatment based on direct experience with the disease and its consequences (Brownlee, Leventhal, and Leventhal, 2000). Personal experiences with diabetes and its prevention and treatment, observations of diabetic individuals and their family members and friends, and contacts with medical practitioners will provide both visual and auditory images to shape preventive practices.
The social environment, generally accepted beliefs expressed in culturally specific media, and beliefs expressed by family and friends will influence individuals’ representations of specific preventive procedures. Individuals’ common-sense models, self-efficacy expectations, and behaviors will be shaped further by observations of the preventive efforts of others; their conditions for performance, difficulty, efficacy, and other factors; and others’ comments about preventive efforts (Leventhal et al., 2001; Leventhal, Hudson, and Robitaille, 1997; Leventhal, Diefenbach, and Leventhal, 1992). It can be expected that the representation of preventive actions will affect not only the performance of specific actions, but the trust in and credibility of specific sources and messages and the impact of these messages on individuals’ belief systems and perceptions.
Knowledge, Beliefs, Experience, Emotions, and Action
The differences in knowledge and beliefs across ethnic communities should not obscure the commonalities—and there are many. Individuals in all communities express beliefs about the causes and consequences of diabetes, its susceptibility to control, and its symptoms, and all express beliefs about the procedures for preventing and controlling the disease and who is responsible for its control. Emotional distress and depression are also present
among diabetic individuals in all communities. Differences appear, however, in the prevalence and precise meaning of the factors within each domain. For example, the nearly universal expressed belief that one has no control over diabetes seems to be directly related to the failure to take preventive actions, but lack of control appears to depend on a number of more fundamental, experiential factors, including personal and observed experience with the chronic, consistent worsening of diabetes-related dysfunction; beliefs placing causal responsibility on the larger, external culture (those who are responsible for causing it are responsible for curing it); and experienced difficulty in performing specific activities for diabetes control, such as exercise (Garro, 1995; Blanchard et al., 1999). Social barriers also play a critical role. Barriers may include pressure to eat traditional foods that are inappropriate for diabetics and lack of control over meal preparation.
Cause and Control
Foods high in fats and sugars are perceived as critical causes of obesity and diabetes, whether one is African-American (Blanchard et al., 1999; Liburd et al., 1999; Minnesota program); Hispanic (Hunt, Valenzuela, and Pugh, 1998; Zaldivar and Smolowitz, 1994); Native American, such as, Dakota Sioux (Lang, 1985, 1989) or Ojibway (Garro, 1990, 1995); or Asian American. Studies show that food-related causal beliefs differed among these communities, as did the association of such beliefs with behavior. As diabetes was absent prior to the change from traditional diets to store-bought foods, Native Americans identified it as a “whiteman’s sickness” (Garro, 1995). This focus appeared to facilitate beliefs in other “external” causes, such as hormones injected into animals and insecticides sprayed on crops. “Personal causation,” a second theme, linked diabetes to excessive drinking and overeating. Garro’s findings suggest that the externalization of the cause
to relatively uncontrollable factors will lead to low community efficacy, with adverse effects on personal efficacy.
Problems controlling diet were pronounced and common to all groups. One problem was lack of knowledge. For example, group members lacked the knowledge to accurately identify foods that were free of salt or sugar and to prepare healthy yet tasty meals (Hispanic participants in the Minnesota program). Another problem was social issues, such as the effect of diabetic dietary restrictions on family relationships (Hmong community participants in the Minnesota program) because (1) culturally valued foods were not among recommended healthy foods (Native Americans: Parker, 1994) and (2) adhering to “proper” diets interfered with social relationships that required sharing traditional foods (Lang, 1995). Avoiding traditional foods was seen as a sign of disrespect to those offering them (Pacific Islanders: Wang et al., 1999). Barriers to dietary adherence also existed in a variety of contextual factors, ranging from the difficulty of preparing two menus to the availability and greater cost of healthy foods (Hispanic communities: Hunt, Valenzuela, and Pugh, 1998). Many of the variations on the diet/food/obesity theme are not ethnically specific, and the absence of data from specific ethnic communities likely reflects the focus of the investigator or the special circumstances of the respondents.
A few studies reported data suggesting that latent cultural and individual values may play a critical role in dietary practices. Liburd and colleagues (1999) examined perceptions of preferred body size among African-American women with Type 2 diabetes. As these women “understood” the relationship of weight to diabetes, two-thirds of them expressed a desire to lose weight. However, when confronted with images of thin, mid-sized, and large bodies, they rejected “thin” bodies as unhealthy and perceived mid-sized to large bodies as signs of good health. African-American women living in less safe, low-income areas also appeared to see large body size as a safety factor; a large person appeared more formidable and less likely to be attacked. Implicit beliefs such as
these can create a sense of unease and hesitation to adopt and adhere to weight reduction programs.
Another example concerns the role of symptoms and feeling states as motivators and deterrents to diabetes-healthy diets. Members of Hispanic communities reported (Hunt, Pugh, and Valenzuela, 1998) that how they felt determined when and how they used medication and complied with diabetes-healthy diets; if they felt “well,” they didn’t need either. Respondents also reported tradeoffs between medication and dietary behavior. They increased medication in response to dietary indiscretions, a phenomenon that has been documented previously in the anthropological literature (Garruto et al., 1999; Trostle and Sommerfield, 1996). The somatic sensations and sense of well-being generated by consuming large amounts of food also emerged as a deterrent to consuming meager, diabetes-healthy diets among Native Americans from the Dakota tribe (Lang, 1985, 1989). Thus, weight reduction can involve a tradeoff between diabetes control and good health and perceived safety for African-American women, and between diabetes control and somatic feelings of fullness and well-being for Hispanics and Native Americans. Similar findings regarding the use of symptoms to regulate medication for hypertension have been reported for low-income whites and African-Americans; respondents were more compliant with medication and had better blood pressure control if they believed their medications reduced their blood pressure symptoms (Meyer, Leventhal, and Guttman, 1985). Unfortunately for these respondents, symptoms are unrelated to blood pressure.
Although the findings for exercise are similar in some ways to those for diet, differences emerge. Hispanic women believed exercise was important for diabetes control (Hunt, Valenzuela, and Pugh, 1998), but Pacific Islanders did not attach a high priority to this behavior (Wang et al., 1999). Comparisons between African-American and white women showed less frequent and less intense
exercise by the former (Summerson, Konen, and Dignan, 1992). Barriers to exercise were reported by women from all ethnic communities, though income level affected the frequency with which specific barriers were mentioned. For example, women from low-income areas were more likely to report difficulties in finding a safe and appropriate place to exercise and an inability to afford child care. Pain and distress from exercise are commonly expressed barriers among older, female respondents, who are most susceptible to diabetes and its complications (Leventhal et al., 2001). The negative perception of exercise by Hispanic respondents—that exercise posed the danger of rapid declines in blood sugar levels and symptoms of hypoglycemia—represents another barrier that is likely based on direct observation either of other persons or personal experience. Thus, perceived features of the environment and experienced somatic effects, such as pain, appear to be the main barriers to exercise, or at least are reported to be.
Hopelessness and Personal, Medical, and Social Support for Diabetes Control
The prescription for lifestyle changes in diet and exercise for diabetes prevention and control gives the at-risk individual two complex behavioral tasks that are difficult to initiate and more difficult to sustain. The difficulties in changing behaviors that are the major targets of prevention programs are consistent with data showing a high level of fatalism and hopelessness regarding diabetes prevention. African-American respondents are reported to experience a nearly overwhelming sense of powerlessness and lack of control over the development and management of their diabetes, a feeling made more extreme for respondents experiencing one or more complications of diabetes (Blanchard et al., 1999). Powerlessness was felt by African-American and Native American participants in the Minnesota program, and by low-income Mexican Americans (Schwab, Meyer, and Merrell, 1994). Hispanic respondents expressed their sense of powerlessness in different ways. Some attributed diabetes to prior and unchangeable life traumas
such as auto accidents and prior illnesses (Hunt, Valenzuela, and Pugh, 1998). Others believed diabetes was caused by fate or God (Quotromoni et al., 1994). Still others perceived diabetes as incurable (Weller et al., 1999), and others saw it as a source of frustration and blamed themselves because they could not follow a proper lifestyle (Native Americans: Parker, 1994).
Not surprisingly, hopelessness is associated with beliefs in the importance of external support from family and health care providers. A supportive family is seen as critical for adoption and maintenance of preventive behaviors, and a sympathetic and caring medical provider is essential to provide the emotional reassurances and educational input needed for understanding the disease and developing the skills needed for more complex, and potentially risky and threatening, self-regulation behaviors, such as use of insulin. These feelings were expressed by African-American, Hispanic, Chinese American, and Native American respondents. As is the case for other chronic, difficult-to-understand, and seemingly intractable conditions, respondents vacillate between traditional and “Western” biomedical systems and their respective treatments.
Intervening for Diabetes Prevention and Control
Preparing recommendations for future programmatic communication research would be much easier if one could draw on a body of studies that have identified communication factors known to facilitate effective preventive behaviors. Although studies of communications targeting diabetes-related behaviors are sparse, a substantial number of studies provide information important for the future development of communication research. These studies have three objectives: (1) demonstrating the efficacy of specific treatments for reducing complications of diabetes, (2) evaluating the efficacy of different interventions for changing behavior in the hope of achieving improved control, and (3) attempting to translate efficacy findings to community and treatment settings, such as carrying out studies of effectiveness. Communication broadly de-
fined, both mass media and interpersonal communication of various types (e.g., doctor and investigator with participants, participants with family members and friends), is involved in all three types of studies. Studies that provide evidence for the contribution of a specific type of communication or media to behavioral change are lacking.
Drug Trials: Studies of treatment efficacy provide compelling evidence of the effectiveness of specific treatments for controlling adverse outcomes of diabetes, though the largest randomized clinical trials have been conducted with Type 1 diabetes. For example, the 1993 publication of findings from the Diabetes Control and Complications Trial Research Group showed that intensive therapy (use of an external insulin pump or 3 or more daily insulin injections guided by frequent blood glucose monitoring) in comparison to conventional therapy (one or two daily insulin injections) resulted in a 76-percent reduction in retinal pathology and a 60-percent reduction in neuropathy in 1,440 persons with insulin-dependent diabetes. Although the differences are of a lesser magnitude, these early dramatic effects were sustained 4 years after completion of the trial (The Diabetes Control and Complications Trial, 2000).
The UK Prospective Diabetes Study, begun in 1978, is a large clinical trial study involving more than 5,000 patients suffering from Type 2 diabetes (Kothari et al., 2001). The main focus has been on glycemic (blood sugar) control by using insulin and sulfonylurea drugs instead of on diet modifications. The intensive drug treatments were found to be effective in reducing the various negative outcomes of Type 2 diabetes such as progressive retinopathy. Treatments augmented with beta-blockers helped reduced cardiovascular complication associated with Type 2 diabetes. Metformin (an organic enzyme) alone reduced myocardial infarctions (heart attacks) in obese patients, but combinations of metformin and sulfonylurea drugs had an adverse effect. This has been carried out
over a long time period with a median followup of 11 years. More than 60 research papers have published findings from this program.
Behavioral Studies: A meta-analysis reviewing the efficacy of a behavioral intervention offers encouragement regarding the efficacy of exercise as a means of reducing glycosylated hemoglobin (HbA1c). Twelve aerobic and two resistance training studies found postintervention HbA1c to be “lower in the exercise groups compared with the control groups,” a difference that “should decrease the risk of diabetic complications” (Boule, Haddad, and Kenny, 2001).
The Diabetes Prevention Program (Diabetes Prevention Program Research Group, 2002) found that both lifestyle changes and drug treatments were effective in reducing the incidence of Type 2 diabetes. In this study, 2,324 nonaffected individuals who had elevated glucose concentrations but did not have diabetes were randomly assigned to one of three experimental conditions: lifestyle modification (diet and exercise), metformin administration twice daily, and placebo. The baseline characteristics of the study population included both genders; several ethnic groups (white, African-American, Hispanic, Native American/Alaskan Native, and Asian American/Pacific Islander); and variations in age, weight, family history, body-mass index, leisure physical activity, and blood glucose levels. The average followup was 2.8 years after the beginning of the trials. Although some disparities in occurrence of diabetes were found across ethnic groups, lifestyle changes provided the best outcome for all groups. Overall, lifestyle interventions reduced the incidence of diabetes by 58 percent relative to the placebo, while metformin reduced the incidence by 31 percent. Asians had the lowest incidence rate when following the lifestyle intervention, and African-Americans had the lowest incidence rate when administering metformin. Approximately half of the participants in the lifestyle treatment group met the weight loss goal of 7 percent, and three-quarters met the exercise goal of 150 minutes per week (at 6 months); at the 2.8-year
followup, the percentage that had maintained these goals over time was 38 percent and 58 percent, respectively.
Behaviors such as dieting and exercise for weight loss define two of the complex, difficult-to-change behaviors important for both primary and secondary prevention: Dieting requires regulating an appetitive response, while exercise requires the introduction of a time-consuming change in lifestyle that can be physically distressing. Few studies have collected evidence on long-term adherence (Diabetes Prevention Program Research Group, 2002). Evidence is mixed for success in generating adherence to a variety of relatively easy-to-perform self-monitoring behaviors important for secondary prevention, including weighing oneself, daily examination and cleansing of feet, and simple protective behaviors such as wearing shoes both inside and outside the home when there is evidence of neuropathy. Behavioral interventions that encourage testing blood sugar and self-administering medication (oral medication and insulin, although the latter is used less often to control Type 2 diabetes) appear more effective, but the intervener confronts an additional set of factors important for behavioral change—the abilities to self-administer medications and to manage the threats that arise if the medications are administered incorrectly. For example, excessive doses of insulin can generate life-threatening attacks of hypoglycemia. Fears of such attacks are associated with less adequate control and increased threat of long-term complications.
Two points should be kept in mind when using the results of studies of behavioral interventions to draw conclusions relevant to communication campaigns for changing these same behaviors. The first, and most important, is that the individuals in these studies either have or are at risk for diabetes and, therefore, are willing and/or motivated to participate. There is an enormous gap between the disinterested or hostile nonparticipant and the willing recruit; to a substantial degree, the latter individual is on the same page as the investigator. The proportion of “eligible” elderly, those most at risk for chronic disability from conditions such as diabetes and arthritis, who are willing to participate in efficacy trials on
exercise and other health behaviors is distressingly small (Leventhal et al., 2001). Second, it is worth noting that the goals for a particular behavior can differ depending on the stage of disease and the presence of other treatments. For example, variation in sugar intake will have relatively little immediate effect on those with Type 2 diabetes not using medication to control blood sugar levels, but can have important, immediate consequences for those with Type 2 diabetes who have used excessive amounts of insulin or oral medication.
Sustaining Weight Loss and Exercise Behavior
An enormous number of studies have been conducted on weight loss and regular exercise. Both of these behaviors have been difficult to influence, particularly over the long term, with the initial effects of cognitive behavioral interventions generally dissipating over a year or two (Wing et al., 1986, 1998). Although the subset of studies on samples of those with diabetes or individuals at high risk for diabetes is smaller than that for those who do not suffer from diabetes, a meta-analysis of 72 randomized trials with diabetic participants (Norris, Engelgau, and Narayan, 2001) suggests that it is possible to initiate changes in knowledge and self-management practices, such as frequency and accuracy of self-monitoring of blood glucose and self-reported dietary habits. Effects of interventions on lipids, physical activity, weight, and blood pressure were variable, and most beneficial effects were observed for 6 months or less. It may be more difficult to sustain alterations in dietary practices and exercise among those with Type 2 diabetes than among those who do not suffer from the disease. Failure to sustain dietary and exercise changes often are attributed to the complexity of these behaviors, which may be more rigorous for regimens to control diabetes than more usual everyday dietary or exercise practices. Such explanations likely fall short, however, of capturing critical factors that investigators need to recognize. Differences reflecting less favorable levels of adherence for those at risk suggest that worsening consequences, and attributions to un-
controllable causes, may undermine self-efficacy motivation, resulting in failure to sustain behavioral change.
An Education Program to Influence Behavior
The National Diabetes Education Program (2002) was developed in the mid-1990s to raise awareness about the causes and treatments for diabetes, to promote early diagnosis, and to prevent the onset of Type 2 diabetes. It is a large-scale program that includes a number of communication interventions. We describe this program because of its scale and its work with diverse populations; however, no systematic evaluation has been done on the program’s impact, particularly regarding potential differential effects on diverse populations. The program is sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases and the Centers for Disease Control and Prevention’s Division of Diabetes Translation. It has private and public partners who are asked to provide information about their organizational structure, size, and activities. Activities of concern may include a range of communication strategies, including newsletters, personal communication, and materials on prevention and care. Partners are provided with media kits and guidelines for developing campaigns. A Web site (http://ndep.nih.gov/) offers links to information about the program and about diabetes and its prevention, procedures for conducting an awareness campaign, and applications for becoming a partner. Six organizations are working with the program’s minority work groups to distribute culturally appropriate education messages. These include the Association of American Indian Physicians, Association of Asian Pacific Community Health Organizations, National Asian Women’s Health Organization, National Council of La Raza, National Hispanic Council on Aging, and Urban League of Nebraska.
The program’s messages promote identified cultural values that encourage diabetes self-care (cultural incentives) and challenge cultural traditions that inhibit diabetes care-related behaviors (cul-
tural barriers). For example, messages for Hispanics to control diabetes were developed to counter the fatalistic belief that diabetes complications are inevitable, and messages for Native American/Alaskan Native populations emphasize the importance of growing older to “be around” for younger generations and to pass on traditions (Centers for Disease Control and Prevention, 1999).
A Community-Level Behavior Study
Daniel et al. (1999) used social learning principles based on cognitive behavioral theory, in comparing an experimental community to two control communities. The majority of communications were delivered to the entire community, though the subset assessed for knowledge gains and physiological changes had a more intimate relationship with the program investigators. The approach was multilevel because it included television, radio, and newspaper coverage of program activities and individuals could participate in physical activity classes, health events, cooking demonstrations, information forums on diabetes, and if diabetic, a diabetes support group. Relative to the two control communities, the intervention community showed positive gains for systolic blood pressure, but did more poorly than the controls for the glycated hemoglobin (HbA1c) test. However, all differences were minimal for the relatively small sample of individuals repeatedly assessed.
Given the paucity of well-planned and well-evaluated programs for communication for behavior change related to primary and secondary prevention of diabetes, this section discusses factors that should be considered in developing such interventions in the future.
A hypothesis that is both implicit and explicit throughout this volume is that a message that takes account of the knowledge, beliefs, and cultural and ecological contexts of its audience should be more successful in achieving its goals. Until goals and audi-
ences are specified, however, this assumption remains little more than an empty truism. The hypothesis, that behavioral theory has a critical role to play in assuring success, has a similar empty status until theory is translated into specific communication content and structure, and delivered in appropriate channels. The following recommendations and suggestions should assist investigators and program planners with these tasks.
Behavioral Goals and Disease Status
Selection of an attitudinal or behavioral goal for communication, an essential first step in comprehensive planning for a diabetes prevention program, should reflect the nature of diabetes as a chronic, lifelong disease that may require the segmentation of the population with respect to its medical status. Possible population segments include those who are at risk but not yet diabetic; diabetic but without neurologic or cardiac complications; or diabetic and with specifiable complications. Planners and developers of communication interventions should consider the following points:
Evidence that links behavior change to disease risk and progression should be communicated.
Some goals are important across disease states, such as maintaining appropriate blood sugar levels, while others, such as neuropathy and avoidance of ulceration, will vary. A different set of specifiable behaviors will come into play for different end points.
There is the possibility that increased awareness, screening, and other factors encouraged by the program can lead to apparent increases in prevalence that will be reported by local media and interpreted by the community as a sign of program failure.
Behavioral Goals and Disease Beliefs
Self-regulation models of behavior suggest the need to consider a number of social-psychological issues and/or constraints when selecting a target behavior.
Does the behavior make sense given the model of the disease held by the recipient audience? If diabetes is understood as a blood sugar problem, it makes sense to reduce sugar consumption and to use a medication to reduce blood sugar. It may make less sense, however, that exercise can affect blood sugar, or that the neuropathy and the absence of foot pain means that blood sugar is causing a serious disease threat that could lead to ulcers and foot amputation.
Communication to enhance effective self-regulation should consider the structure of the recommended behavior and present an appropriate plan for action (Leventhal, 1970; Gollwitzer, 1999). Areas to be explored may include whether the program can select a target behavior that is relatively easy to perform and an early step in a lengthier, more complex sequence of actions, and whether the program can generate actions that enhance self-efficacy and encourage the performance of subsequent, more difficult-to-perform actions.
Will the recommended behavior lead to noticeable outcomes that will be perceived as indicators of success in preventing diabetes and one of its feared outcomes? Any relief of patient anxiety or discomfort will be an experiential reinforcement for the recommended behavior.
Communications to regulate behaviors that produce intense and rapid feedback must include careful instructions for performing the action, criteria for interpreting behavioral feedback, and behaviors to provide control and create a sense of control over potentially threatening feedback. For example, improper dosage of insulin can create reactions that will be perceived as, and that can be, an indicator of a serious health threat. Awareness of these somatic changes and ways of controlling them should be considered.
Realistic criteria should be provided. Messages that encourage behaviors that have effects that appear over long time frames (such as weight loss or reduction in blood sugar) should provide reasonable and achievable intermediate outcome expectations for the behavior. It is too easy for a recipient to assume that
he or she has failed to change behavior if the criteria for evaluating success are inappropriate. For example, if expectations for weight loss are unrealistic, such as 5-pound changes in a week, appropriate changes of 1 to 2 pounds a week may be read as failures, leading to nonadherence and rejection of prior and future health messages.
The complexity of each behavioral goal suggests different strategies for communication. For example, mass media may be useful for defining broad goals, such as weight loss, and even for defining sensible criteria, such as weight loss of 1 to 2 pounds a week. The skills needed to achieve weight loss, such as food preparation, may be better presented through print media, television food programs, and direct instruction.