Hispanic Health Care International, Vol. 11, No. 4, 2013
© 2013 Springer Publishing Company http://dx.doi.org/10.1891/1540-4153.11.4.167
Literature Review: General Literacy and Health Literacy in Dominicans With Diabetes Judith Aponte, DNSc, RN, CCM, CDE, APHN-BC Hunter College, City University of New York Dominicans are one of the fastest growing Hispanic subgroups in the United States, and they are greatly affected by type 2 diabetes. Health literacy and general literacy are critical components in diabetes selfmanagement given that type 2 diabetes is a disease that relies heavily on a person having the skills needed to actively participate in their diabetes care. Three PubMed searches were conducted using search words Dominicans, Hispanics, diabetes, type 2 diabetes, diabetes education, health literacy, and literacy. These searches were based on published articles completed from January 2000 to May 2012. There were 14 articles reviewed. Eight articles were eliminated from the 3 literature searches. These findings show a lack of data and research on Dominicans with diabetes and on health literacy and general literacy among this Hispanic subgroup. Qualitative and quantitative studies are urgently needed to examine diabetes in Dominicans and the impact health literacy and general literacy have on diabetes health outcomes in this Hispanic subgroup. Los dominicanos son uno de los subgrupos de hispanos de más rápido crecimiento en los Estados Unidos y uno de los grupos más afectados por diabetes tipo 2. La alfabetización en salud y la alfabetización general, son componentes críticos para el auto-manejo de la diabetes, debido a que la diabetes tipo 2 es una enfermedad que depende en gran medida de la persona, la cual debe poseer las herramientas necesarias para participar activamente en el cuidado de su diabetes. Se realizaron tres búsquedas en PubMed utilizando las palabras Dominicanos, Hispanos, diabetes, diabetes tipo 2, educación sobre diabetes, alfabetización en salud y alfabetización. Estas búsquedas se basaron en artículos publicados desde Enero 2000 a Mayo 2012. Se revisaron un total de 14 artículos. Ocho artículos fueron eliminados de las 3 búsquedas de literatura. Estos resultados demuestran la falta de datos e investigaciones acerca de diabetes en los Dominicanos y acerca de alfabetización en general en este subgrupo de Hispanos. Estudios cualitativos y cuantitativos se necesitan con urgencia para examinar la diabetes en los Dominicanos y conocer el impacto que tiene la alfabetización en salud y la alfabetización en general sobre la diabetes y la salud en este subgrupo de Hispanos. Keywords: Dominicans; diabetes; Hispanics; health literacy; general literacy
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he American Diabetes Association (ADA, 2011) defines type 2 diabetes as a chronic disease characterized by hyperglycemia. Type 2 diabetes occurs when the body does not produce enough insulin or is unable to properly use insulin (U.S. Department of Health and Human Services, n.d.) causing hyperglycemia. Many organ systems throughout the body are affected by chronic hyperglycemia resulting from continuously rising blood glucose, which leads to long-term damage and diabetes-related complications (Deshpande, Harris-Hayes, & Schootman, 2008; Fowler, 2011). Such complications
include nephropathy, retinopathy, neuropathy, coronary artery disease, peripheral vascular disease, and stroke (Fowler, 2011), which increases morbidity and mortality in people with type 2 diabetes (Reusch, 2003). It is essential for people with type 2 diabetes to understand how to manage their diabetes, making health literacy and general literacy an important component of their learning. Also, it is essential to know how to reduce diabetes-related complications and to improve health outcomes. Health literacy is the capability to gather, process, understand, and interpret basic health information to make 167
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appropriate health decisions (Centers for Disease Control and Prevention [CDC], n.d.). Studies have shown a relationship between limited health literacy and poor health outcomes, increased mortality and morbidity, accessing fewer health care and preventative services, overuse of hospitals and emergency room visits, and high health care costs (White, 2008). For example, a person with type 2 diabetes who is poorly managing his diabetes—because of a lack of understanding of the importance of maintaining normal glucose levels or of follow-up care—could potentially have more hospitalizations, diabetes-related complications (e.g., retinopathy), and comorbid conditions (e.g., hypertension) than a person who has better health literacy. Studies have shown that general literacy (i.e., the ability to read and write) also impacts health outcomes and costs (Dewalt, Berkman, Sheridan, Lohr, & Pignone, 2004). For example, people with type 2 diabetes and poor general literacy have more difficulty understanding and interpreting diabetes-related educational materials (e.g., brochures), nutritional information (e.g., reading a food label), and medication labels (e.g., how much or when to take and refill medications), increasing the chances of more outpatient visits and hospitalizations than people with high general literacy (Schillinger et al., 2002). Given that general literacy affects a person’s ability to read diabetes materials—medication or food labels—and health literacy affects a person’s ability to accurately search for and use diabetes information and adopt healthier behaviors, both types of literacy have been shown to influence and impact diabetes-related outcomes and costs (White, 2008). In addition, based on the complexity of diabetes management regimens, studies have shown challenges in succeeding in self-management of diabetes (e.g., maintaining normal glycated hemoglobin [A1c], taking medications properly), particularly for those with limited health or general literacy (Wallace, Carlson, Malone, Joyner, & DeWalt, 2010). Hispanics have a lower health literacy rate than nonHispanics (National Council of La Raza, 2009). In 2003, the U.S. Department of Health and Human Services (2008) reported that 41% of adult Hispanics had a health literacy rate lower than the basic level compared to non-Hispanic Blacks (NHBs; 24%), non-Hispanic Whites (NHWs; 9%), and others (13%). Hispanics also have lower general literacy (i.e., prose, document, and quantitative literacy) levels than non-Hispanics. In 2003, the National Assessment of Adult Literacy (U.S. Department of Education, 2006) showed 44% of adult Hispanics had lower than basic prose literacy level (i.e., the ability to understand and use information from continuous texts) compared to NHBs (24%) and NHWs (7%); 36% had lower than basic document literacy (i.e., the ability to use the needed knowledge and skills from noncontinuous texts) compared to NHBs (24%) and NHWs (8%); and 50% had lower than basic quantitative literacy (i.e., the ability to identify and perform computations using numbers embedded in printed materials) compared to NHBs (47%) and NHWs (13%).
Given that studies on limited health literacy and general health literacy have shown people to have difficulties in understanding, interpreting, and using health information and services, Hispanics are at risk for misunderstanding health information and having poorer health outcomes. Type 2 diabetes is a public health concern, particularly for Hispanics. For example, Bermudez, Velez-Carrasco, Schaefer, and Tucker (2002) report that Hispanics (36.3%) had a higher rate of diabetes than NHWs (22.2%). The U.S. Census Bureau (n.d.a) reports that there are more than 30 Hispanic subgroups living in the United States, which indicates that Hispanics are a heterogeneous group with differences among subgroups. Diabetes is an example of this. It is known that type 2 diabetes affects Hispanic subgroups at different rates, placing particular subgroups at higher risk for diabetes (Aponte, 2009b). Although there is published information on diabetes in some specific Hispanic subgroups (e.g., Mexican Americans), there is a paucity of published research on Dominicans. Dominicans are a distinct Hispanic subgroup that is quickly growing in the United States. They are the fourth largest Hispanic subgroup in the United States comprising 1.4 million people or 2.8% of the total Hispanic population (50.4 million, 16.3% of total U.S. population; U.S. Census Bureau, 2011). The Dominican population is growing rapidly: in 2000, the United States had 764,000 Dominicans (0.2% of the total population; U.S. Census Bureau, 2000); by 2007, the number had risen to 1.2 million (0.3%; U.S. Census Bureau, 2009); and by 2010 was 1.4 million (0.4%; U.S. Census Bureau, n.d.b). As Aponte (2009a) reports, Hispanic subgroups are diverse with different genetic compositions, and cultural and dietary customs, thus making each subgroup unique. Therefore, it is essential and important to identify diabetes-related disparities that exist among different Hispanic subgroups.
Methods The purpose of this review is to examine the literature on (a) prevalence of diabetes among the Dominican population and (b) impact of health literacy and general literacy among Dominicans on diabetes management and outcomes. The inclusion criteria for all literature searches were type 2 diabetes, adults, health literacy, general literacy, and Dominicans. The date parameters set for the different searches were from January 1, 2000 to May 31, 2012 for completion of the published articles. In June 2012, three PubMed database searches of articles published from January 2000 to May 2012 were conducted. The first search, using the keywords diabetes and Dominicans, resulted in 9 articles; a second search, using the keywords health literacy, literacy, Dominicans, diabetes education, and general literacy showed 0 articles; and a third search, using the keywords health literacy, literacy, Hispanics, diabetes education, and general literacy showed 5 articles (see Table 1). 168
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31,240 English- and Spanish-speaking Mexican American, Mexicans born in Mexico, PRs born in Puerto Rico, Central/South Americans, Cubans born in Cuba, and Dominicans born in the DR men and women 18–85 years of age from the United States.
656 PR, Dominican, and NHW men and women with type 2 diabetes 60–96 years of age from MA.
Pabon-Nau et al., 2010
Tucker, Bermudez, et al., 2000
- Preferred language unknown
866 PR, Dominican, and NHW men and women 55 years and older from MA.
Examine and compare the prevalence of functional limitation and of disability among PRs and Dominicans to NHWs.
Examine and compare the prevalence of diabetes among PRs and Dominicans to NHWs.
Compare Hispanics of different subgroups based on country of origin compared to Mexican Americans.
Determine the prevalence of cardiovascular risks.
Examined prevalence of diabetes and diabetes practices of health providers in diabetes management.
Purpose
Community
Cross-sectional survey, community
Secondary dataset NHIS 2000–2005
Cross-sectional survey, community
Primary care practice
Setting
Age, gender, household income, household arrangement, cigarette smoking, alcohol consumption, BMI, waist circumference, ADL, history of a heart attack, other heart disease stroke, HTN, diabetes, kidney disease, cancer, arthritis, respiratory disease, hip fracture, cataract, depression.
Age, gender, years of education, poverty level, smoking cigarettes, alcohol use, physical activity score, BMI, waist circumference.
Age, gender, diabetes, HTN, BMI, smoking, acculturation.
Diabetes, impaired fasting blood glucose, cholesterol, HTN, overweight/obese.
A1c, microalbumin testing, number of people on ACE inhibitors, providing pneumococcal and influenza vaccines, review of activity status and exercise, identifying smoking status, prescribing lipidlowering agents, BMI.
Outcome Measures
Note. PR 5 Puerto Rican; MA 5 Massachusetts; A1c 5 glycated hemoglobin; ACE 5 angiotensin-converting enzyme; BMI 5 body mass index; HTN 5 ypertension; DR 5 Dominican Republic; NHIS 5 National Health Interview Survey; NHW 5 non-Hispanic White; ADL 5 activities of daily living. h
Tucker, Falcon, et al., 2000
785 Spanish-speaking Dominicans 18 years and older from Northern Manhattan.
Getaneh et al., 2008
- Preferred language unknown
98 PRs, Dominican, and other Latino/ Hispanic men and women with diabetes 18 years and older from MA.
Participants (N), Age, Gender, and Location
Cleghorn et al., 2004
Author(s)
TABLE 1. PubMed Search From 2000 to 2012: Dominicans and Diabetes
General Literacy and Health Literacy
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Although all 14 articles were reviewed, 2 were not specific to diabetes, 1 was conducted on mice, and all 5 articles from the third search did not examine the implications of health literacy and general literacy on diabetes management or outcomes among Hispanics with diabetes. For that reason, these 8 articles were excluded. Hence, 6 articles were used in the study.
It is essential to examine both health literacy and general literacy (i.e., the ability to read and write) because diabetes is a disease that relies heavily on a person having the skills needed to actively participate in his or her diabetes care by setting goals (e.g., reducing A1c level) and accomplishing treatment plans (e.g., reduce carbohydrate intake and increase exercise). Poor health literacy, in combination with poor general literacy, is a barrier to understanding instructions from health care providers, accessing information, adhering to treatment (e.g., a multiple medication regimen), and managing complex chronic diseases (e.g., metabolic syndrome; Rothman et al., 2004). As Kim, Love, Quistberg, and Shea (2004) report, limited or poor health literacy has been associated with worse diabetes health outcomes and diabetes knowledge and poor self-care. Findings in this study found that people (NHWs, NHBs, and others) with diabetes who had limited health literacy had a significantly higher rate of diabetes complications (47.6%) than those with adequate health literacy (32.4%). Hence, this study suggests a direct association between health literacy and diabetes complications. Basic health literacy is an essential element for a successful interaction and relationship between a health care provider and patient because it allows for patients to ask questions and clarify any concerns regarding prescriptions, treatments, and recommendations. Thus, there is a need to discuss health literacy and its implications for people managing diabetes-related complications, particularly in this Hispanic subgroup. As this review shows, there are no published studies on the impact of health literacy and general literacy on diabetes management or outcomes among Dominicans. Overall, these multiple PubMed searches illustrate that there is a lack of published information focused on the health literacy and general literacy of Dominicans with diabetes and the effects that health literacy has on the diabetes management and outcomes of this Hispanic subgroup. This paucity of data on a Hispanic subgroup greatly affected by diabetes, and the lack of data on health literacy and general literacy in this unique subgroup, needs to be explored.
Results Of the nine studies reviewed from the first search on diabetes and Dominicans, five studies examined the rates of diabetes in Dominicans; only two studies specified that the subjects had type 2 diabetes; only three studies were comprised exclusively of Dominicans; and only the study by Aponte, Boutin-Foster, and Alcantara (2012) mentioned both general literacy and health literacy (i.e., knowing A1c, blood pressure [BP] ranges, and cholesterol levels) within their sample of Dominicans.
Discussion Diabetes Among Dominicans The five studies on diabetes in Dominicans found them to have high diabetes rates. The study by Getaneh, Michelen, and Findley (2008) reported that 17% of Dominicans living in New York City (NYC) had diabetes, and another 20% were at risk for developing diabetes (i.e., impaired fasting blood glucose or prediabetes). Dominicans had higher prevalence rates of diabetes compared to other Hispanic groups and/or the general population. In the five studies, the prevalence rate of diabetes in Dominicans ranged from 5.0% to 19.5% but was lower than Puerto Ricans in two studies (Cleghorn et al., 2004; Getaneh et al., 2008; Pabon-Nau, Cohen, Meigs, & Grant, 2010; Tucker, Bermudez, & Castaneda, 2000; Tucker, Falcon, Bianchi, Cacho, & Bermudez, 2000; see Table 1).
Health Literacy and General Literacy Despite the fact that Dominicans are one of the fastest growing Hispanic subgroups in the Northeastern part of the United States, there is only one published article on Dominicans with diabetes reporting their general literacy and health literacy. That study, which was conducted by Aponte et al. (2012), reported on a sample of 50 Spanish-speaking Dominican men and women with diabetes 40–74 years of age from Northern Manhattan in NYC. They found that 90.0% had low levels of general literacy, 2.5% were able to report their A1c, and none were able to report BP ranges or cholesterol levels. These findings indicate poor health literacy about diabetes self-management in this group as the ADA (2012) recommends that people with diabetes should understand and know their A1c, BP ranges, and cholesterol levels.
Limitations There are several limitations of this literature review. One is publication bias, which may have limited the presentation of data on Dominicans with limited or low rates of health literacy or general literacy. For example, a reason for publication bias could be that studies conducted on Dominicans may not have been submitted for publication, limiting the amount of published data on this Hispanic subgroup. A second limitation is participation bias, in which people with limited health literacy or general literacy may participate less frequently in research, resulting from fear and/or shame in the inability to understand or 170
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read forms (e.g., educational materials, consent forms; Cornett, 2009). A third is selection bias, which may result in researchers having an underrepresented Dominican population because most researchers’ study samples are based on “Hispanics,” not on specific subgroups. A fourth is measurement bias, which may have limited the presentation on health or general literacy because some studies mention the terms in the article but do not indicate the measure used. When the researcher fails to mention how health or general literacy is measured, the reader is unable to know the actual variable (e.g., health literacy, general literacy, or another type of literacy) measured in the study. Other studies lack clarity about the type of literacy (i.e., health literacy or general literacy) and the type of diabetes (i.e., type 1 or type 2) being discussed, not allowing the reader to know which term is being studied. Another measurement bias identified during this literature review was from all of the general literacy articles. General literacy was measured only by educational attainment, which is not the most reliable and valid method because educational systems between countries vary and different countries measure general literacy in a dissimilar way (Bloom, 2006). Finally, when publishing, some researchers may not add certain terms in their keywords, making it difficult for others to find potentially relevant published articles when conducting a search, thus possibly missing important articles and not using them in their work.
Future research considerations should include the following: identifying the Hispanic subgroups in their sample to identify and provide data on specific Hispanic subgroups; inclusion of Dominicans in their sample; using Spanish tools in evaluating health literacy and general literacy in Hispanics who are monolingual (Spanish only); examining the impact cultural beliefs and values have on health literacy in Hispanics with diabetes; examining diabetes outcomes, health literacy, and general literacy in Hispanics who are monolingual (Spanish only) and comparing them to those who are bilingual (English and Spanish); examining health literacy and general literacy and the impact they have on diabetes knowledge and selfmanagement among Dominicans or different Hispanic subgroups; examining the implications health literacy and general literacy have on diabetes-related complications among different Hispanic subgroups; comparing the rates of diabetes in U.S. Dominicans to those living in the Dominican Republic; and examining the relationship between health literacy and general literacy among different Hispanic subgroups with diabetes. Studies with this level of specificity would provide more insight on diabetes among the Dominican population.
References American Diabetes Association. (2011). Diagnosis and classification of diabetes mellitus. Diabetes Care, 34(Suppl. 1), S62–S69. American Diabetes Association. (2012). Standards of medical care in diabtes-2012. Diabetes Care, 35(Suppl. 1), S11–S63. Aponte, J. (2009a). Addressing cultural heterogeneity among Hispanic subgroups by using Campinha-Bacote’s model of cultural competency. Holistic Nursing Practice, 23(1), 3–12. Aponte, J. (2009b). Diabetes-related risk factors across Hispanic subgroups in the Hispanic health and nutritional examination survey (1982–1984). Public Health Nursing, 26(1), 23–38. Aponte, J., Boutin-Foster, C., & Alcantara, R. (2012). Knowledge, perceptions, and experiences of Dominicans with diabetes. Journal of Immigrant and Minority Health, 14(6), 1006–1013. http://dx.doi.org/10.1007/s10903–012–9630–6 Bermudez, O. I., Velez-Carrasco, W., Schaefer, E. J., & Tucker, K. L. (2002). Dietary and plasma lipid, lipoprotein, and apolipoprotein profiles among elderly Hispanics and non-Hispanics and their association with diabetes. American Journal of Clinical Nutrition, 76(6), 1214–1221. Bloom, D. E. (2006). Measuring global educational progress. American Academy of Arts and Science. Retrieved from https:// www.amacad.org/publications/bloom.pdf Centers for Disease Control and Prevention. (n.d.). Health literacy: Accurate, accessible and actionable health information for all. Retrieved from http://www.cdc.gov/healthliteracy/ Cleghorn, G. D., Nguyen, M., Roberts, B., Duran, G., Tellez, T., & Alecon, M. (2004). Practice-based interventions to improve health care for Latinos with diabetes. Ethnicity & Disease, 14(Suppl. 1), S117–S121. Cornett, S. (2009). Assessing and addressing health literacy. The Online Journal of Issues in Nursing, 14(3). http://dx.doi .org/10.3912/OJIN.Vol14No03Man02
Conclusion Overall, studies have shown that poor health and general literacy is independently associated with poor glycemic control, poor diabetes self-management behaviors, higher rates of diabetes complications, and poor health outcomes (Nath, 2007). Hence, poor health and general literacy contributes to disparities in the burden of diabetes complications among underserved populations, such as Dominicans with diabetes, making it essential to evaluate health and general literacy levels to provide more effective educational strategies. This review provides important insight into the lack of studies on Dominicans with diabetes and the impact health literacy and general literacy has on diabetes management and its outcomes among Dominicans. As the Dominican population continues to increase, it will be necessary to study their diabetes complications and health trends because this Hispanic subgroup’s behavior and diabetes-related health outcomes will impact public health spending nationally.
Future Direction for Research To advance the literature on Dominicans with diabetes, and health literacy and general literacy in this Hispanic subgroup, different types of research should be conducted. 171
Aponte Ricans, Dominicans, and non-Hispanic white neighborhood comparison group. Journal of Gerontology, 55(2), M90–M97. U.S. Census Bureau. (2000). The Hispanic population in the United States. Retrieved from http://www.census.gov/prod/ 2001pubs/c2kbr01-3.pdf U.S. Census Bureau. (2009). 2006 American Community Survey, Hispanic or Latino origin by specific origin. Retrieved from http://factfinder2.census.gov/faces/t ableservices/jsf/ pages/p roductview.xhtml?pid=ACS_07_1YR_B03001 &prodType=table U.S. Census Bureau. (2011). The Hispanic population: 2010. Retrieved from http://www.census.gov/prod/cen2010 /briefs/c2010br-04.pdf U.S. Census Bureau. (n.d.a). Hispanic origin. Retrieved from http:// www.census.gov/population/hispanic/about/faq.html U.S. Census Bureau. (n.d.b). Hispanic or Latino by type: 2010. United States. Retrieved from http://factfinder2.census.gov/faces/ tableservices/jsf/pages/productview.xhtml?pid=DEC_10_ SF1_QTP10&prodType=table U.S. Department of Education. (2006). A first look at the literacy of America’s adults in the 21st century. Retrieved from http:// nces.ed.gov/NAAL/PDF/2006470.PDF U.S. Department of Health and Human Services. (2008). America’s health literacy: Why we need accessible health information. Retrieved from http://www.health.gov/ communication/literacy/issuebrief/ U.S. Department of Health and Human Services. (n.d.). Causes of diabetes (NIH Publication No. 11-5164). Retrieved from http://diabetes.niddk.nih.gov/dm/pubs/causes/Causes_of_ Diabetes_508.pdf Wallace, A. S., Carlson, J. R., Malone, R. M., Joyner, J., & DeWalt, D. A. (2010). The influence of literacy on patient-reported experiences of diabetes self-management support. Nursing Research, 59(5), 356–363. White, S. (2008). Assessing the nation’s health literacy: Key concepts and findings of the National Assessment of Adult Literacy (NAAL). Chicago, IL: American Medical Association Foundation. Retrieved from http://www.ama-assn.org/ ama1/pub/upload/mm/367/hl_report_2008.pdf
Deshpande, A. D., Harris-Hayes, M., & Schootman, M. (2008). Epidemiology of diabetes and diabetes-related complications. Physical Therapy, 88(11), 1254–1264. Dewalt, D. A., Berkman, N. D., Sheridan, S., Lohr, K., & Pignone, M. P. (2004). Literacy and health outcomes: Systemic review. Journal of General Internal Medicine, 19(12), 1228–1239. Fowler, M. J. (2011). Microvascular and macrovascular complications of diabetes. Clinical Diabetes, 29(3), 116–122. Getaneh, A., Michelen, W., & Findley, S. (2008). The prevalence of cardiovascular risk conditions and awareness among a Latino subgroup: Dominicans in northern Manhattan. Ethnicity & Disease, 18(3), 343–347. Kim, S., Love, F., Quistberg, D. A., & Shea, J. A. (2004). Association of health literacy with self-management behavior in patients with diabetes. Diabetes Care, 27(12), 2980–2982. Nath, C. (2007). Literacy and diabetes self-management. American Journal of Nursing, 107(6), 43–49. National Council of La Raza. (2009). Profiles of Latino health: The top twelve questions about Latinos and health care. Retrieved from http://www.nclr.org/images/uploads/pages/Question %2012.pdf Pabon-Nau, L. P., Cohen, A., Meigs, J. B., & Grant, R. W. (2010). Hypertension and diabetes prevalence among U.S. Hispanics by country of origin: The National Health Interview Survey 2000-2005. Journal of General Internal Medicine, 25(8), 847–852. Reusch, J. E. B. (2003). Diabetes, microvascular complications, and cardiovascular complications: What is it about glucose? Journal of Clinical Investigation, 112(7), 986–988. Rothman, R. L., DeWalt, D. A., Malone, R., Bryant, B., Shintani, A., Crigler, B., . . . Pignone, M. (2004). Influence of patient literacy on the effectiveness of a primary care-based diabetes disease management program. Journal American Medical Association, 292(14), 1711–1716. Schillinger, D., Grumbach, K., Piette, J., Wang, F., Osmond, D., Daher, C., . . . Bindman, A. B. (2002). Association of Health Literacy With Diabetes Outcomes. Journal American Medical Association, 288(4), 475–482. http://dx.doi.org/10.1001/ jama.288.4.475 Tucker, K. L., Bermudez, O. I., & Castaneda, C. (2000). Type 2 diabetes is prevalent and poorly controlled among Hispanic elders of Caribbean origin. American Journal of Public Health, 90(8), 1288–1293. Tucker, K. L., Falcon, L. M., Bianchi, L. A., Cacho, E., & Bermudez, O. I. (2000). Self-reported prevalence and health correlates of functional limitation among Massachusetts elderly Puerto
Correspondence regarding this article should be directed to Judith Aponte, DNSc, RN, CCM, CDE, APHN-BC, Hunter-Bellevue School of Nursing, Hunter College and Graduate Center, City University of New York, 425 East 25th Street, Mailbox #888, New York, NY 10010. E-mail: [email protected]
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© 2013 Springer Publishing Company http://dx.doi.org/10.1891/1540-4153.11.4.167
Literature Review: General Literacy and Health Literacy in Dominicans With Diabetes Judith Aponte, DNSc, RN, CCM, CDE, APHN-BC Hunter College, City University of New York Dominicans are one of the fastest growing Hispanic subgroups in the United States, and they are greatly affected by type 2 diabetes. Health literacy and general literacy are critical components in diabetes selfmanagement given that type 2 diabetes is a disease that relies heavily on a person having the skills needed to actively participate in their diabetes care. Three PubMed searches were conducted using search words Dominicans, Hispanics, diabetes, type 2 diabetes, diabetes education, health literacy, and literacy. These searches were based on published articles completed from January 2000 to May 2012. There were 14 articles reviewed. Eight articles were eliminated from the 3 literature searches. These findings show a lack of data and research on Dominicans with diabetes and on health literacy and general literacy among this Hispanic subgroup. Qualitative and quantitative studies are urgently needed to examine diabetes in Dominicans and the impact health literacy and general literacy have on diabetes health outcomes in this Hispanic subgroup. Los dominicanos son uno de los subgrupos de hispanos de más rápido crecimiento en los Estados Unidos y uno de los grupos más afectados por diabetes tipo 2. La alfabetización en salud y la alfabetización general, son componentes críticos para el auto-manejo de la diabetes, debido a que la diabetes tipo 2 es una enfermedad que depende en gran medida de la persona, la cual debe poseer las herramientas necesarias para participar activamente en el cuidado de su diabetes. Se realizaron tres búsquedas en PubMed utilizando las palabras Dominicanos, Hispanos, diabetes, diabetes tipo 2, educación sobre diabetes, alfabetización en salud y alfabetización. Estas búsquedas se basaron en artículos publicados desde Enero 2000 a Mayo 2012. Se revisaron un total de 14 artículos. Ocho artículos fueron eliminados de las 3 búsquedas de literatura. Estos resultados demuestran la falta de datos e investigaciones acerca de diabetes en los Dominicanos y acerca de alfabetización en general en este subgrupo de Hispanos. Estudios cualitativos y cuantitativos se necesitan con urgencia para examinar la diabetes en los Dominicanos y conocer el impacto que tiene la alfabetización en salud y la alfabetización en general sobre la diabetes y la salud en este subgrupo de Hispanos. Keywords: Dominicans; diabetes; Hispanics; health literacy; general literacy
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he American Diabetes Association (ADA, 2011) defines type 2 diabetes as a chronic disease characterized by hyperglycemia. Type 2 diabetes occurs when the body does not produce enough insulin or is unable to properly use insulin (U.S. Department of Health and Human Services, n.d.) causing hyperglycemia. Many organ systems throughout the body are affected by chronic hyperglycemia resulting from continuously rising blood glucose, which leads to long-term damage and diabetes-related complications (Deshpande, Harris-Hayes, & Schootman, 2008; Fowler, 2011). Such complications
include nephropathy, retinopathy, neuropathy, coronary artery disease, peripheral vascular disease, and stroke (Fowler, 2011), which increases morbidity and mortality in people with type 2 diabetes (Reusch, 2003). It is essential for people with type 2 diabetes to understand how to manage their diabetes, making health literacy and general literacy an important component of their learning. Also, it is essential to know how to reduce diabetes-related complications and to improve health outcomes. Health literacy is the capability to gather, process, understand, and interpret basic health information to make 167
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appropriate health decisions (Centers for Disease Control and Prevention [CDC], n.d.). Studies have shown a relationship between limited health literacy and poor health outcomes, increased mortality and morbidity, accessing fewer health care and preventative services, overuse of hospitals and emergency room visits, and high health care costs (White, 2008). For example, a person with type 2 diabetes who is poorly managing his diabetes—because of a lack of understanding of the importance of maintaining normal glucose levels or of follow-up care—could potentially have more hospitalizations, diabetes-related complications (e.g., retinopathy), and comorbid conditions (e.g., hypertension) than a person who has better health literacy. Studies have shown that general literacy (i.e., the ability to read and write) also impacts health outcomes and costs (Dewalt, Berkman, Sheridan, Lohr, & Pignone, 2004). For example, people with type 2 diabetes and poor general literacy have more difficulty understanding and interpreting diabetes-related educational materials (e.g., brochures), nutritional information (e.g., reading a food label), and medication labels (e.g., how much or when to take and refill medications), increasing the chances of more outpatient visits and hospitalizations than people with high general literacy (Schillinger et al., 2002). Given that general literacy affects a person’s ability to read diabetes materials—medication or food labels—and health literacy affects a person’s ability to accurately search for and use diabetes information and adopt healthier behaviors, both types of literacy have been shown to influence and impact diabetes-related outcomes and costs (White, 2008). In addition, based on the complexity of diabetes management regimens, studies have shown challenges in succeeding in self-management of diabetes (e.g., maintaining normal glycated hemoglobin [A1c], taking medications properly), particularly for those with limited health or general literacy (Wallace, Carlson, Malone, Joyner, & DeWalt, 2010). Hispanics have a lower health literacy rate than nonHispanics (National Council of La Raza, 2009). In 2003, the U.S. Department of Health and Human Services (2008) reported that 41% of adult Hispanics had a health literacy rate lower than the basic level compared to non-Hispanic Blacks (NHBs; 24%), non-Hispanic Whites (NHWs; 9%), and others (13%). Hispanics also have lower general literacy (i.e., prose, document, and quantitative literacy) levels than non-Hispanics. In 2003, the National Assessment of Adult Literacy (U.S. Department of Education, 2006) showed 44% of adult Hispanics had lower than basic prose literacy level (i.e., the ability to understand and use information from continuous texts) compared to NHBs (24%) and NHWs (7%); 36% had lower than basic document literacy (i.e., the ability to use the needed knowledge and skills from noncontinuous texts) compared to NHBs (24%) and NHWs (8%); and 50% had lower than basic quantitative literacy (i.e., the ability to identify and perform computations using numbers embedded in printed materials) compared to NHBs (47%) and NHWs (13%).
Given that studies on limited health literacy and general health literacy have shown people to have difficulties in understanding, interpreting, and using health information and services, Hispanics are at risk for misunderstanding health information and having poorer health outcomes. Type 2 diabetes is a public health concern, particularly for Hispanics. For example, Bermudez, Velez-Carrasco, Schaefer, and Tucker (2002) report that Hispanics (36.3%) had a higher rate of diabetes than NHWs (22.2%). The U.S. Census Bureau (n.d.a) reports that there are more than 30 Hispanic subgroups living in the United States, which indicates that Hispanics are a heterogeneous group with differences among subgroups. Diabetes is an example of this. It is known that type 2 diabetes affects Hispanic subgroups at different rates, placing particular subgroups at higher risk for diabetes (Aponte, 2009b). Although there is published information on diabetes in some specific Hispanic subgroups (e.g., Mexican Americans), there is a paucity of published research on Dominicans. Dominicans are a distinct Hispanic subgroup that is quickly growing in the United States. They are the fourth largest Hispanic subgroup in the United States comprising 1.4 million people or 2.8% of the total Hispanic population (50.4 million, 16.3% of total U.S. population; U.S. Census Bureau, 2011). The Dominican population is growing rapidly: in 2000, the United States had 764,000 Dominicans (0.2% of the total population; U.S. Census Bureau, 2000); by 2007, the number had risen to 1.2 million (0.3%; U.S. Census Bureau, 2009); and by 2010 was 1.4 million (0.4%; U.S. Census Bureau, n.d.b). As Aponte (2009a) reports, Hispanic subgroups are diverse with different genetic compositions, and cultural and dietary customs, thus making each subgroup unique. Therefore, it is essential and important to identify diabetes-related disparities that exist among different Hispanic subgroups.
Methods The purpose of this review is to examine the literature on (a) prevalence of diabetes among the Dominican population and (b) impact of health literacy and general literacy among Dominicans on diabetes management and outcomes. The inclusion criteria for all literature searches were type 2 diabetes, adults, health literacy, general literacy, and Dominicans. The date parameters set for the different searches were from January 1, 2000 to May 31, 2012 for completion of the published articles. In June 2012, three PubMed database searches of articles published from January 2000 to May 2012 were conducted. The first search, using the keywords diabetes and Dominicans, resulted in 9 articles; a second search, using the keywords health literacy, literacy, Dominicans, diabetes education, and general literacy showed 0 articles; and a third search, using the keywords health literacy, literacy, Hispanics, diabetes education, and general literacy showed 5 articles (see Table 1). 168
169
31,240 English- and Spanish-speaking Mexican American, Mexicans born in Mexico, PRs born in Puerto Rico, Central/South Americans, Cubans born in Cuba, and Dominicans born in the DR men and women 18–85 years of age from the United States.
656 PR, Dominican, and NHW men and women with type 2 diabetes 60–96 years of age from MA.
Pabon-Nau et al., 2010
Tucker, Bermudez, et al., 2000
- Preferred language unknown
866 PR, Dominican, and NHW men and women 55 years and older from MA.
Examine and compare the prevalence of functional limitation and of disability among PRs and Dominicans to NHWs.
Examine and compare the prevalence of diabetes among PRs and Dominicans to NHWs.
Compare Hispanics of different subgroups based on country of origin compared to Mexican Americans.
Determine the prevalence of cardiovascular risks.
Examined prevalence of diabetes and diabetes practices of health providers in diabetes management.
Purpose
Community
Cross-sectional survey, community
Secondary dataset NHIS 2000–2005
Cross-sectional survey, community
Primary care practice
Setting
Age, gender, household income, household arrangement, cigarette smoking, alcohol consumption, BMI, waist circumference, ADL, history of a heart attack, other heart disease stroke, HTN, diabetes, kidney disease, cancer, arthritis, respiratory disease, hip fracture, cataract, depression.
Age, gender, years of education, poverty level, smoking cigarettes, alcohol use, physical activity score, BMI, waist circumference.
Age, gender, diabetes, HTN, BMI, smoking, acculturation.
Diabetes, impaired fasting blood glucose, cholesterol, HTN, overweight/obese.
A1c, microalbumin testing, number of people on ACE inhibitors, providing pneumococcal and influenza vaccines, review of activity status and exercise, identifying smoking status, prescribing lipidlowering agents, BMI.
Outcome Measures
Note. PR 5 Puerto Rican; MA 5 Massachusetts; A1c 5 glycated hemoglobin; ACE 5 angiotensin-converting enzyme; BMI 5 body mass index; HTN 5 ypertension; DR 5 Dominican Republic; NHIS 5 National Health Interview Survey; NHW 5 non-Hispanic White; ADL 5 activities of daily living. h
Tucker, Falcon, et al., 2000
785 Spanish-speaking Dominicans 18 years and older from Northern Manhattan.
Getaneh et al., 2008
- Preferred language unknown
98 PRs, Dominican, and other Latino/ Hispanic men and women with diabetes 18 years and older from MA.
Participants (N), Age, Gender, and Location
Cleghorn et al., 2004
Author(s)
TABLE 1. PubMed Search From 2000 to 2012: Dominicans and Diabetes
General Literacy and Health Literacy
Aponte
Although all 14 articles were reviewed, 2 were not specific to diabetes, 1 was conducted on mice, and all 5 articles from the third search did not examine the implications of health literacy and general literacy on diabetes management or outcomes among Hispanics with diabetes. For that reason, these 8 articles were excluded. Hence, 6 articles were used in the study.
It is essential to examine both health literacy and general literacy (i.e., the ability to read and write) because diabetes is a disease that relies heavily on a person having the skills needed to actively participate in his or her diabetes care by setting goals (e.g., reducing A1c level) and accomplishing treatment plans (e.g., reduce carbohydrate intake and increase exercise). Poor health literacy, in combination with poor general literacy, is a barrier to understanding instructions from health care providers, accessing information, adhering to treatment (e.g., a multiple medication regimen), and managing complex chronic diseases (e.g., metabolic syndrome; Rothman et al., 2004). As Kim, Love, Quistberg, and Shea (2004) report, limited or poor health literacy has been associated with worse diabetes health outcomes and diabetes knowledge and poor self-care. Findings in this study found that people (NHWs, NHBs, and others) with diabetes who had limited health literacy had a significantly higher rate of diabetes complications (47.6%) than those with adequate health literacy (32.4%). Hence, this study suggests a direct association between health literacy and diabetes complications. Basic health literacy is an essential element for a successful interaction and relationship between a health care provider and patient because it allows for patients to ask questions and clarify any concerns regarding prescriptions, treatments, and recommendations. Thus, there is a need to discuss health literacy and its implications for people managing diabetes-related complications, particularly in this Hispanic subgroup. As this review shows, there are no published studies on the impact of health literacy and general literacy on diabetes management or outcomes among Dominicans. Overall, these multiple PubMed searches illustrate that there is a lack of published information focused on the health literacy and general literacy of Dominicans with diabetes and the effects that health literacy has on the diabetes management and outcomes of this Hispanic subgroup. This paucity of data on a Hispanic subgroup greatly affected by diabetes, and the lack of data on health literacy and general literacy in this unique subgroup, needs to be explored.
Results Of the nine studies reviewed from the first search on diabetes and Dominicans, five studies examined the rates of diabetes in Dominicans; only two studies specified that the subjects had type 2 diabetes; only three studies were comprised exclusively of Dominicans; and only the study by Aponte, Boutin-Foster, and Alcantara (2012) mentioned both general literacy and health literacy (i.e., knowing A1c, blood pressure [BP] ranges, and cholesterol levels) within their sample of Dominicans.
Discussion Diabetes Among Dominicans The five studies on diabetes in Dominicans found them to have high diabetes rates. The study by Getaneh, Michelen, and Findley (2008) reported that 17% of Dominicans living in New York City (NYC) had diabetes, and another 20% were at risk for developing diabetes (i.e., impaired fasting blood glucose or prediabetes). Dominicans had higher prevalence rates of diabetes compared to other Hispanic groups and/or the general population. In the five studies, the prevalence rate of diabetes in Dominicans ranged from 5.0% to 19.5% but was lower than Puerto Ricans in two studies (Cleghorn et al., 2004; Getaneh et al., 2008; Pabon-Nau, Cohen, Meigs, & Grant, 2010; Tucker, Bermudez, & Castaneda, 2000; Tucker, Falcon, Bianchi, Cacho, & Bermudez, 2000; see Table 1).
Health Literacy and General Literacy Despite the fact that Dominicans are one of the fastest growing Hispanic subgroups in the Northeastern part of the United States, there is only one published article on Dominicans with diabetes reporting their general literacy and health literacy. That study, which was conducted by Aponte et al. (2012), reported on a sample of 50 Spanish-speaking Dominican men and women with diabetes 40–74 years of age from Northern Manhattan in NYC. They found that 90.0% had low levels of general literacy, 2.5% were able to report their A1c, and none were able to report BP ranges or cholesterol levels. These findings indicate poor health literacy about diabetes self-management in this group as the ADA (2012) recommends that people with diabetes should understand and know their A1c, BP ranges, and cholesterol levels.
Limitations There are several limitations of this literature review. One is publication bias, which may have limited the presentation of data on Dominicans with limited or low rates of health literacy or general literacy. For example, a reason for publication bias could be that studies conducted on Dominicans may not have been submitted for publication, limiting the amount of published data on this Hispanic subgroup. A second limitation is participation bias, in which people with limited health literacy or general literacy may participate less frequently in research, resulting from fear and/or shame in the inability to understand or 170
General Literacy and Health Literacy
read forms (e.g., educational materials, consent forms; Cornett, 2009). A third is selection bias, which may result in researchers having an underrepresented Dominican population because most researchers’ study samples are based on “Hispanics,” not on specific subgroups. A fourth is measurement bias, which may have limited the presentation on health or general literacy because some studies mention the terms in the article but do not indicate the measure used. When the researcher fails to mention how health or general literacy is measured, the reader is unable to know the actual variable (e.g., health literacy, general literacy, or another type of literacy) measured in the study. Other studies lack clarity about the type of literacy (i.e., health literacy or general literacy) and the type of diabetes (i.e., type 1 or type 2) being discussed, not allowing the reader to know which term is being studied. Another measurement bias identified during this literature review was from all of the general literacy articles. General literacy was measured only by educational attainment, which is not the most reliable and valid method because educational systems between countries vary and different countries measure general literacy in a dissimilar way (Bloom, 2006). Finally, when publishing, some researchers may not add certain terms in their keywords, making it difficult for others to find potentially relevant published articles when conducting a search, thus possibly missing important articles and not using them in their work.
Future research considerations should include the following: identifying the Hispanic subgroups in their sample to identify and provide data on specific Hispanic subgroups; inclusion of Dominicans in their sample; using Spanish tools in evaluating health literacy and general literacy in Hispanics who are monolingual (Spanish only); examining the impact cultural beliefs and values have on health literacy in Hispanics with diabetes; examining diabetes outcomes, health literacy, and general literacy in Hispanics who are monolingual (Spanish only) and comparing them to those who are bilingual (English and Spanish); examining health literacy and general literacy and the impact they have on diabetes knowledge and selfmanagement among Dominicans or different Hispanic subgroups; examining the implications health literacy and general literacy have on diabetes-related complications among different Hispanic subgroups; comparing the rates of diabetes in U.S. Dominicans to those living in the Dominican Republic; and examining the relationship between health literacy and general literacy among different Hispanic subgroups with diabetes. Studies with this level of specificity would provide more insight on diabetes among the Dominican population.
References American Diabetes Association. (2011). Diagnosis and classification of diabetes mellitus. Diabetes Care, 34(Suppl. 1), S62–S69. American Diabetes Association. (2012). Standards of medical care in diabtes-2012. Diabetes Care, 35(Suppl. 1), S11–S63. Aponte, J. (2009a). Addressing cultural heterogeneity among Hispanic subgroups by using Campinha-Bacote’s model of cultural competency. Holistic Nursing Practice, 23(1), 3–12. Aponte, J. (2009b). Diabetes-related risk factors across Hispanic subgroups in the Hispanic health and nutritional examination survey (1982–1984). Public Health Nursing, 26(1), 23–38. Aponte, J., Boutin-Foster, C., & Alcantara, R. (2012). Knowledge, perceptions, and experiences of Dominicans with diabetes. Journal of Immigrant and Minority Health, 14(6), 1006–1013. http://dx.doi.org/10.1007/s10903–012–9630–6 Bermudez, O. I., Velez-Carrasco, W., Schaefer, E. J., & Tucker, K. L. (2002). Dietary and plasma lipid, lipoprotein, and apolipoprotein profiles among elderly Hispanics and non-Hispanics and their association with diabetes. American Journal of Clinical Nutrition, 76(6), 1214–1221. Bloom, D. E. (2006). Measuring global educational progress. American Academy of Arts and Science. Retrieved from https:// www.amacad.org/publications/bloom.pdf Centers for Disease Control and Prevention. (n.d.). Health literacy: Accurate, accessible and actionable health information for all. Retrieved from http://www.cdc.gov/healthliteracy/ Cleghorn, G. D., Nguyen, M., Roberts, B., Duran, G., Tellez, T., & Alecon, M. (2004). Practice-based interventions to improve health care for Latinos with diabetes. Ethnicity & Disease, 14(Suppl. 1), S117–S121. Cornett, S. (2009). Assessing and addressing health literacy. The Online Journal of Issues in Nursing, 14(3). http://dx.doi .org/10.3912/OJIN.Vol14No03Man02
Conclusion Overall, studies have shown that poor health and general literacy is independently associated with poor glycemic control, poor diabetes self-management behaviors, higher rates of diabetes complications, and poor health outcomes (Nath, 2007). Hence, poor health and general literacy contributes to disparities in the burden of diabetes complications among underserved populations, such as Dominicans with diabetes, making it essential to evaluate health and general literacy levels to provide more effective educational strategies. This review provides important insight into the lack of studies on Dominicans with diabetes and the impact health literacy and general literacy has on diabetes management and its outcomes among Dominicans. As the Dominican population continues to increase, it will be necessary to study their diabetes complications and health trends because this Hispanic subgroup’s behavior and diabetes-related health outcomes will impact public health spending nationally.
Future Direction for Research To advance the literature on Dominicans with diabetes, and health literacy and general literacy in this Hispanic subgroup, different types of research should be conducted. 171
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Correspondence regarding this article should be directed to Judith Aponte, DNSc, RN, CCM, CDE, APHN-BC, Hunter-Bellevue School of Nursing, Hunter College and Graduate Center, City University of New York, 425 East 25th Street, Mailbox #888, New York, NY 10010. E-mail: [email protected]
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