Elsevier

Social Science & Medicine

Volume 59, Issue 11, December 2004, Pages 2183-2193
Social Science & Medicine

Diabetes meanings a mong those without diabetes: explanatory models of immigrant Latinos in rural North Carolina

https://doi.org/10.1016/j.socscimed.2004.03.024Get rights and content

Abstract

The prevalence of type 2 diabetes is increasing in the United States, particularly among minority individuals. Primary prevention programs for diabetes must be designed to address the beliefs of the populations they target. Little research has investigated the beliefs of those who do not have diabetes. This analysis uses in-depth interviews collected from Latino immigrants, not diagnosed with diabetes, living in a rural US community. Structured by the explanatory models [EM] of Illness framework, this analysis delineates the EMs of diabetes in this community. A significant number of the participants had little knowledge and few beliefs about diabetes. The EMs of those with knowledge of diabetes were varied, but several beliefs were widely held: (a) diabetes is a serious disease that is based on heredity or is inherent in all persons, (b) diabetes can result from several factors, including strong emotions and lifestyle characteristics (an unhealthy diet, not taking care of oneself), (c) beliefs about strong emotion and the importance of blood are related to diabetes causes, symptoms and treatment, and (d) a major and undesirable outcome of diabetes is weight loss. These results provide information for the design of health programs for the prevention of type 2 diabetes.

Introduction

The prevalence of type 2 diabetes is increasing in the United States. Groups with the greatest risk for diabetes are those with the least access to care and least able to manage the disease (Kaiser Family Foundation, 1999). These groups include Native Americans, African Americans and Latinos, and other low-income populations (ADA, 2003a). Diabetes management requires resources for home glucose monitoring, regular medical care, oral medications, a modified diet, exercise and physical activity, and, in more advanced cases, insulin injections. Rather than treat diabetes once an individual has the disease, it is much better for the individual's quality of life—and less costly—to delay or prevent onset of the disease. Recent research shows that diabetes onset can be delayed or prevented with changes in behavior (Diabetes Prevention Program Research Group, 2002).

Health education directed to behavior change requires a thorough understanding of the diabetes beliefs and practices of the target audience. There has been considerable effort to delineate diabetes beliefs and practices (e.g., Cohen, Tripp-Reimer, Smith, Sorofman, & Lively, 1994; Hunt, Arar, & Larme, 1998a). However, this work has been based largely on research with individuals already diagnosed with diabetes and in the medical system. These analyses are important for secondary prevention. It is not clear if the knowledge and beliefs of people with diabetes change after they are in the medical system and if these existing analyses provide information needed for primary prevention.

This analysis is directed at one group at increased risk for diabetes, Latinos who have immigrated to the US, and delineates the explanatory models (EMs) of diabetes among Latinos who do not have diabetes (Kleinman, 1980). The data are from a larger study examining diabetes prevention in several at-risk populations.

Diabetes prevalence varies by ethnic group, being lowest among non-Hispanic whites (7.8%) but much higher among African Americans (13.0%), Native Americans (15.1%), and Latinos (10.2%) (ADA, 2003a). Among Latinos, prevalence varies by nationality group; 25% of Mexican Americans and Puerto Ricans aged 45–74 years have diabetes, while 16% of Cuban Americans have the disease (ADA, 2003b). Research is documenting the factors that could delay or prevent the onset of the disease. The Diabetes Prevention Program Research Group (2002) found significant decreases in diabetes progression among impaired glucose tolerance (IGT) participants with a modified diet and increased physical activity. The goal of these lifestyle changes included 7% weight loss and at least 150 min of weekly physical activity. The incidence of diabetes among those undertaking the lifestyle changes was 4.8 cases per 100 person-years compared to 7.8 cases for those taking a medication and 11.0 cases for those taking a placebo. Similarly, the Finnish Diabetes Prevention Study (Tuomilehto et al., 2001) found that weight loss, reduced saturated fat intake, increased fiber consumption, and increased exercise stopped disease progression.

Those sharing a culture have their own EMs of illness that influence their behaviors with regard to prevention and treatment and which differ from biomedical models (Kleinman (1980), Kleinman (1988)). The EM framework has been used to examine beliefs about numerous illnesses. For example, Cohen et al. (1994) examined diabetes EMs among Midwestern whites. Information on five aspects of illness is sought for EMs: (1) etiology, (2) time and mode of the onset of symptoms, (3) pathophysiology, (4) course of sickness, and (5) treatment. People vary in the content of their EMs, but these EMs share common features to the extent that persons share a common culture (Rubel & Hass, 1995). EMs are usually a combination of conscious and tacit knowledge and are particularly well suited for exploring the beliefs and perceptions about common diseases such as diabetes.

Analyses of Latino health beliefs provide insight into diabetes EMs they share (Alcozer, 2000; Chesla, Skaff, Bartz, Mullan, & Fisher, 2000; Hunt et al., 1998a; Hunt, Pugh, & Valenzuela, 1998b; Hunt, Valenzuela, & Pugh, 1998c; Jezewski, & Poss, 2002; Poss, & Jezewski, 2002; Weller et al., 1999). These analyses are largely based on research with Mexican immigrants and Mexican Americans, with the exception of Weller et al. (1999), who include mainland Puerto Ricans, Mexicans, Guatemalans, and Mexican Americans. Weller et al. (1999) is the only study to include participants who did not have diagnosed diabetes.

There is consistency across these studies in beliefs about diabetes causation, including the roles of heredity, general diet, and consuming too much sugar (Table 1). Other factors believed to cause diabetes are overweight, lifestyle, and emotional trauma. Hunt et al. (1998c) present a causal model of diabetes based on these themes. They suggest that Latinos understand that diabetes has a hereditary base. The expression of the disease results from one of two “provoking” pathways, or their combination. One pathway is the individual's behavior, and includes diet and components of a self-indulgent lifestyle (e.g., excessive alcohol and sugar consumption). The other provoking pathway is events beyond the individual's control, including emotional or physical trauma.

Weller et al. (1999) and Jezewski and Poss (2002) present details of beliefs about diabetes symptoms and treatment. Diabetes symptoms include vision problems, fatigue, headache, thirst, and increased urination. Beliefs about treatment include the importance of medical care and taking prescribed medication, monitoring blood sugar, diet regulation, regular exercise and herbal remedies. Jezewski and Poss (2002) discuss beliefs about the social significance of diabetes. Family support is essential to living with diabetes, and, while Latinos are ambivalent about disclosing that they have diabetes, they are willing to advise others about diagnosis and treatment.

Latinos in the US are at increased risk for developing type 2 diabetes. Research on knowledge and beliefs about diabetes among Latinos has been conducted largely with those who have been diagnosed with the disease. Entering the medical system after diagnosis may change what individuals know and believe about an illness. Basing primary prevention programs on the EMs of those with diagnosed diabetes could result in an educational program with inappropriate content. Furthermore, analyses of diabetes EMs among Latinos have not considered gender or age differences in beliefs. This analysis responds to these gaps by considering gender and age differences in diabetes EMs among Latinos who have not been diagnosed with the disease.

Section snippets

Study design

Data were collected as part of the Prevention of Diabetes (POD) study. Between 2000 and 2002, POD used an ethnographic research design to describe the knowledge and beliefs about diabetes among low-income male and female African Americans, whites and Latinos living in a rural North Carolina community. We limit this analysis to the data collected from Latino participants.

Participants

Participants included 20 men and 20 women Latino immigrants, with 10 of each gender aged 18–30 years and 31–50 years (Table 2). Most had migrated directly from their community of origin. About one-third had been in the community 2 years or less, 3–5 years, and more than 5 years. Most participants were originally from Mexico, but several were from Guatemala and El Salvador. About half of the participants had a primary education or less and half had at least a secondary education. Six of the

A general EM of diabetes causation

Latinos who do not have diabetes express two dominant EMs models of this disease. The first model is shared by the sizable minority who lack information, knowledge and beliefs about diabetes, its causes, symptoms, treatments, or consequences. Some of these individuals lack diabetes knowledge for specific domains, such as the causes of diabetes, or treatments for diabetes. A few of these individuals lack information across most of the domains. They know so little about the disease that they have

Acknowledgements

This research was supported by Grant NR04552 from the National Institute for Nursing Research. The authors wish to thank Sally Nash, Ph.D., and April Soward for their efforts in coordinating project activities.

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