Abstract
Keywords
The U.S. Census Bureau estimated the Hispanic population to be 54 million as of July 2013 (U. S. Census Bureau, 2014), with the Pew Research Center predicting that Latinos will account for 60% of the population growth in the United States between 2005 and 2050 (Passel & Cohn, 2008). The prevalence of diabetes among the Hispanic population of all ages in the United States is 13.3% for all Hispanics and 14.3% among those of Mexican origin (Schiller, Lucas, Ward, & Peregoy, 2012). These numbers underscore the significant impact that diabetes in the Hispanic population has on the U.S. health care system. A recent study showed that although trends for diabetes incidence and prevalence among White Americans have plateaued in the last several years, these numbers are still trending upwards in the Hispanic population (Geiss et al., 2014) as evidenced by the ethnicity-related disparities in diabetes morbidity, mortality, and quality of care that have been documented extensively (Garcia & Benavides-Vaello, 2006; Kirk et al., 2008). The term Hispanic is used in this article when referring to individuals originating from a Spanish-speaking country except when making references to literature in which case the term Latino is used as it appears in the source cited.
Over the past decade and a half the Institute of Medicine has advocated for more patient-centered care as an important way to improve both the quality and safety of care (Institute of Medicine, 2001). Elements of patient-centered care described in the literature include partnership, patient participation in care and decisions, shared decision making, communication, tailoring treatment, and respect for patients wants, needs, and preferences (Robinson, Callister, Berry, & Dearing, 2008; Hudon, Fortin, Haggerty, Lamberts, & Poitras, 2011). In the context of diverse patient care environments where there might be cultural discord between the health care providers and the patients, patient-centered care has to be culturally and linguistically responsive, including attention to access of learning about diabetic self-management (National Institutes of Health, 2013). The aim of this project was to explore the feasibility of adapting a patient-centered lifestyle modification program for the self-management of type 2 diabetes (T2D) to a Hispanic population with low health literacy using an approach being tested in a study at a large academic medical center (Cox, Taylor, McCall, Singh, & Yancy, personal communication, September 1, 2013). A lifestyle modification educational program was presented to a group of Hispanic patients with T2D who were being seen in a rural health center and data were gathered through focus group sessions regarding the cultural applicability of the lifestyle modification program referred to as GEM (Glycemic load diet, Exercise, and self-blood glucose Monitoring).
Theoretical Framework
Adapted from the work done to address disease self-management assessment and education for patients with hypertension (Grueninger, Goldstein, & Duffy, 1990), Whittemore (2006) described a patient-centered model for diabetes education that incorporates the theories of behavioral change that are commonly used in discussing diabetes self-management education within a patient-centered approach (see Figure 1). This model identifies five levels for assessment and intervention to address diabetes self-management, with the levels being cognitive, attitudinal, instrumental, behavioral, and social levels. These concepts anchored the lifestyle modification educational program and guided the data collection and explication by providing a framework for initial coding of the data. The data resulting from the focus groups were categorized under the broad categories of (a) information and knowledge (cognitive), (b) motivation and barriers to behavior change (behavioral), (c) experiences with new self-management behaviors (instrumental), and (d) personal responsibility (attitudinal).
Patient-centered model of diabetes self-management assessment and intervention.
Background
Culturally Tailored Diabetes Education
Clear evidence exists that culturally tailored educational interventions are effective in improving knowledge and glycemic control in Hispanic diabetic populations (Garcia & Benavides-Vaello, 2006; Hawthorne, Robles, Cannings-John, & Edwards, 2008). Ability to adapt the traditional Hispanic diet while considering concerns related to social structures and recognizing the spiritual beliefs of the Latino community are important components of successful diabetes self-management educational interventions in this population (Mauldon, Melkus, & Cagganello, 2006; Metghalchi et al., 2008; Salto et al., 2011). Literacy barriers have been successfully overcome by using novel, nondidactic methods such as soap opera–type audiovisuals, bingo games, and other experiential methods (Rosal et al., 2011).
Lifestyle Modification Approaches to the Treatment of Diabetes
Researchers who developed the GEM program that served as the underpinning for this study reviewed the literature published between 2010 and 2013 to identify recent trials of lifestyle modification interventions for the management of adults with T2D (Cox et al., 2013). Effective interventions for lowering HbA1c levels included the use of low carbohydrate or low glycemic load diets, physical activity that combined resistance training with aerobic exercise, and the use of glucose self-monitoring, yet did not identify any studies that combined all three elements in a diabetes self-management program. Although the low glycemic load diet has been shown to be an effective strategy to improve glycemia in people with T2D (Livesey, Taylor, Hulshof, & Howlett, 2008), only three studies were identified that addressed the use of this strategy in the Hispanic population (Jimenez-Cruz, Bacardi-Gascon, Turnbull, Rosales-Garay, & Severino-Lugo, 2003; Varela, Vega, & Valenzuela, 2012; Ventura et al., 2009). Similarly, the effectiveness of using blood glucose self-monitoring for improved glycemic control in non-insulin-dependent diabetics has been debated extensively (Aakre, Watine, Bunting, Sandberg, & Oosterhuis, 2012; Benhalima & Mathieu, 2012) but not in the context of the Hispanic population with T2D and low health literacy skills. The third component of the GEM program, physical activity, although addressed in many of the culturally tailored interventions reviewed, has not been studied in the context of purposeful blood glucose self-monitoring in the Hispanic population with T2D.
Method
The lifestyle modification program presented to the Hispanic adults with T2D offers an individualized, structured, simple, positive, and sustainable health-enhancing approach based on the principles of active learning. The program consists of (a) blood glucose self-monitoring to motivate and prompt behaviors, (b) instruction on low glycemic load foods, and (c) instruction on the importance of reducing sedentary behaviors and increasing daily moderate and vigorous exercise. The approach also offers dietary strategies, referred to as “sugar blockers,” which have been found to blunt postprandial blood glucose spikes and thereby improve HbA1c levels. The use of protein, fiber, healthful fats, vinegar, and cinnamon has been found to have a mitigating effect on blood glucose when consumed either before or with a high glycemic load meal (Hlebowicz, Darwiche, Björgell, & Almér, 2007; O’Keefe, Gheewala, & O’Keefe, 2008). Based on growing evidence pointing to the increased cardiovascular risk of hyperglycemia and the lack of evidence supporting the correlation between dietary saturated fat intake and cardiovascular disease, participants were encouraged to use moderate amounts of fat in their diet for increased satiety and improved compliance with lower glycemic load intake (Feinman et al., 2015; Lawrence, 2013; Siri-Tarino, Sun, Hu, & Krauss, 2010).
Design
This descriptive qualitative study used a phenomenological approach (Creswell, 2013) to explore how a group of Hispanic adults with T2D and low health literacy skills experienced and interpreted the lifestyle self-management program presented to them during 4 weekly educational focus group sessions.
Sample
Following institutional review board approval of the project protocol and consent form, participants were identified through the health center providers and staff members. Potential participants were contacted by telephone and invited to participate in the project. Inclusion criteria were a diagnosis of T2D, Spanish as primary language, 18 years of age or older, and not pregnant. The goal was to recruit 6 to 10 participants, the optimal number for data collection within a focus group setting (Patten, 2012).
Setting
The rural community health center from which the participants were recruited provides primary health care to an underserved and underinsured population, including a small number of Hispanics and seasonal migrant farm workers. The lifestyle modification program was conducted at the community health center during evening hours to accommodate working participants’ schedules.
Procedures
Educational Program
The GEM manual (Cox, Singh, McCall, Taylor, & Yancy, 2012) on which this project was based consists of chapters on T2D self-management. Use of the GEM manual for this project was approved by the two authors (Taylor and Cox) who served as faculty advisors for this project.
Four weekly, 2-hour evening education sessions were conducted during which time the contents of the GEM manual were presented in Spanish in an interactive format. Given the participants’ literacy challenges, use of written instructional materials had to be used sparingly, prepared at a low literacy level, and adapted further after the first week of the project, with pictures replacing words and diagrams wherever possible. Blood glucose monitoring was demonstrated at the first session, and sample low glycemic load foods and sugar blockers were provided during the time refreshments were served at each session. Leading questions to elicit feedback after each session were directed toward gleaning information on the cultural fit of the GEM self-management educational program for the Hispanic population (see Table 1).
Content Presented in Sessions 1 to 4.
Data Collection
Data were collected through the four 2-hour class and focus group sessions, each of which was recorded digitally. Session 1 began with participants sharing how they currently were managing their T2D, and each session thereafter started with a discussion about the participants’ experiences during the prior week with implementing the self-management ideas from the previous session. Next, the topic for the current week was introduced and presented in an interactive format. Following a short break a group discussion was facilitated using leading questions such as “From your perspective what was most helpful about today’s session?”
Data Explication and Analyses
The data were analyzed using a hermeneutical phenomenology approach (Creswell, 2013). After an initial review of the digital recording from each session, the participants’ feedback and any germane interactions and comments from the group were transcribed and translated into English and reviewed for accuracy by the translation service Mest Interpreters (Chicago, Illinois). Sections of the recordings that were unintelligible because multiple participants were speaking at the same time as well as unnecessary conversational elements were omitted from the transcriptions (Polit & Beck, 2012). The transcribed text was loaded into NVivo 10 software program to organize and analyze the data. Then data were read multiple times, and codes (referred to as nodes in NVivo) were created as themes began to be identified. Meaningful segments of the verbatim data that expressed a common concept were assigned to an appropriate node. Project team faculty members reviewed the initial coding scheme and new nodes were created as needed. The transcripts were read multiple times and new nodes created in an iterative process until data saturation was reached, that is, no new data could be added to the nodes. During this process, subcategories were created within the nodes and some nodes were clustered under overarching headings or themes. The process culminated in a narrative summary of the group’s experiences with the diabetes self-management approach (Creswell, 2013; Polit & Beck, 2012).
Results
Nine participants, ranging in age from 30 to 66 years, who either had been diagnosed with T2D (n = 8) or accompanying a family member (n = 1), completed the study. Length of time from diagnosis ranged from 1 to 7 years, four were men, and all reported being married or partnered. Most participants originated from Mexico, with the exception of two women who were from El Salvador. The length of time participants had been residing in the United States was between 1 and 30 years. Spanish was the primary language for all group members. Four participants reported no formal education, four reported 2 to 12 years of formal schooling, and one did not respond.
Each of the four weekly discussion sessions and focus groups was attended by seven to nine participants, with five of the participants attending all four sessions. Over the course of the group sessions, participants shared feedback clustered around four themes: information and knowledge about T2D, motivation and barriers to changing behaviors, experiences with new self-management behaviors, and personal responsibility for disease management.
Information and Knowledge
Although five participants had been living with the diagnosis of T2D for 5 years or more, all the participants expressed a lack of knowledge regarding basic principles of glycemic control. The following statements are representative of all the participants: One associates diabetes with sugar, that’s all. But we really don’t know what is diabetes or how to prevent it. Now, I have more understanding. We all know about diabetes, but parts we do not know. Today I learned a lot of things. And that sheet [handout] with the [picture of the] woman and complications [of diabetes] helped me understand a lot; sometimes we have these problems but we don’t know that it comes from diabetes.
Some very low glycemic load foods and strategies that aid in preventing an acute rise in blood sugar are, in fact, familiar and common to the traditional diets of El Salvador and Mexico; however, the participants perceived some of these foods (avocados, pork, and dairy products such as yogurt and whole milk) as being “bad” for them. For some participants, learning that strawberries and certain other fruits such as blueberries are low glycemic load foods was encouraging new information.
The participants believed that some high glycemic load foods such as oatmeal, corn, corn flakes, bananas, rice, and refried beans were “good” foods to consume and foods they reportedly included regularly in their meals. One participant expressed being surprised to learn that bottled sodas such as Pepsi would raise one’s blood glucose rapidly. Another learned that toasting bread or a tortilla would not decrease its effect on raising blood sugar.
Each participant’s new awareness of the ability to take control of his or her disease emerged as participants engaged in blood glucose self-monitoring at home and began feeling empowered and motivated to make lifestyle changes. One young mother made a statement that captured the general position of the participants when she said, “If it is in my power to lower my sugar and not take medicine, I will. With this information about food and exercise and everything [that we have been given], one has to do one’s own part.”
Motivation and Barriers to Behavior Change
Participants’ lived experiences with other family members who had diabetes came up repeatedly in the group discussions. The following quote from one participant is representative of the experiences shared by other participants: I have seen diabetes very close—my Mother had diabetes [and I saw her] suffer a lot [and have] amputations. . . . I also watched a neighbor be slowly consumed by the disease until he died. So when I was told I had diabetes, for me [learning my diagnosis] was worse [than it may have been without seeing my mother and my neighbor suffer]. I say this first, because I did not have information about how to manage the illness and, second, because I had seen it [diabetes] firsthand.
Thus, the participants’ witnessing the devastating effects of diabetes on friends and family emerged as a strong motivator for lifestyle change. Also, setting a good example in an effort to prevent diabetes in one’s children was a powerful motivator for the young mothers, as were the potential effects of diabetes on fertility. One participant shared the following statement after the group had discussed reasons why they needed to focus on their own health as well as that of those around them: The group leader has told us do it [control our blood sugar levels] for your [own] health and do it for your son. I don’t want my child to have this [diabetes]. I feel bad about having diabetes, having to take medications, worrying about what [to] eat . . . and sometimes get[ting] upset [because you don’t want your child to have diabetes]. I want to do whatever I can do to need less medication. We have to do our part.
Among the challenges to adopting a low glycemic load diet was the participants’ expressed dislike for or unfamiliarity with a variety of vegetables. Four participants openly shared their dislike for vegetables in general and for raw ones in particular. When participants were invited to give feedback about what they thought would be the most difficult change to implement, one participant offered: I think the hardest thing is to get used to the change in tastes. . . . There are foods that we are not used to [eating] and may seem bland or sour but if we start eating these [foods] daily we will get used to the taste.
Several of the women who were either mothers or older housewives shared feelings of isolation and anxiety, which led them to frequent snacking. Those who were farm workers were challenged with the difficulties of finding the time or convenience to monitor their blood glucose levels during the workday in the fields or the energy to exercise in the evenings given the laborious demands of their work.
Although the participants identified barriers to changing their behaviors regarding the self-management of their T2D, they were open to finding ways to incorporate the principles of diabetes self-management.
Experiences With New Self-Management Behaviors
The participants were asked to experiment with their glucose monitoring before and after eating and before and after activities throughout the day as a way to receive immediate feedback about the effects of these activities on their blood glucose levels and thus to be able to make more informed choices regarding foods and activities. The participants embraced these concepts, sharing their experiences with the group members. Some participants had not been using blood glucose self-monitoring and thus gained a new awareness of their glycemic status and the importance of monitoring their blood glucose levels. During the second group session, one female participant who had been diagnosed with T2D 5 years earlier said: It had been a long time since I have checked it [blood glucose level]. To be honest, I didn’t have a meter for more than 2 years. [Now] I [see] that it [blood glucose level] went up. In the morning [it is] lower, after eating it [goes] up, and at bedtime it [blood glucose level] is even higher.
Another participant followed with the comment “My readings are . . . always high. Even in the mornings, it’s always high. I [have] tried to eat better, but they [blood glucose levels] are still high.”
Others were able to see patterns and the effects of certain foods on their blood glucose levels. During the last group session, participants shared how they were trying some of the strategies learned, with two participants making the following statements: I tried eating fiber before the meal, and, yes, it worked for me. I checked it [blood glucose level] before and after [eating] and it did not go up as much as it did when I ate the same thing before but without the added fiber. I had a little rice with pork chop and beans. The same [amount] that I had the other time, but I had the fiber and . . . it helped. I don’t think I can do it [consume vinegar] but I tried eating the right foods that . . . we talked about . . . and it worked. Your blood sugar [can be] normal when you eat right. I have seen it [happen].
Several participants reported seeing improvements in how they felt when they followed a low glycemic load diet. Specifically, three participants shared that they had experienced a decline in evening headaches that had been a daily occurrence before attending the sessions. Participants shared about changes in their behaviors and trying new foods. Comments that reflect changes made by a farm worker and a stay-at-home mother follow: For me it’s the Coke that I quit. I haven’t had a Coke for a week now. Sometimes it’s a temptation when I drive [my coworkers] on our break and I see them drinking their Cokes. [Instead] I have a glass of water and go to the truck for lunch. I also used to eat sandwiches every day; now I don’t. I take a salad or some eggs or nothing. I tried having plain yogurt with some fresh strawberries for breakfast instead of bread with my coffee. I did not think I would like it, but I liked it!
After the discussions and focus group sessions on physical activity and strategies to blunt the blood sugar spike after meals, the participants shared more success stories: One day I checked my sugar and it was high at 150s. So after dinner I said [to myself], “You know what? I am going out for a walk.” I walked and drank lots of water and it [blood glucose level] went down to 125, so that [walking] did help. I used to come home and lie down after eating [dinner]. Not anymore. When I finish having dinner I talk [on the phone] to my wife in Mexico, but now I walk as I talk instead of lying down. I have learned to eat better . . . what I should eat and what I should not eat. I have set goals. In addition to walking at work, now I see that I do walk a lot on my job [wore pedometer provided in the study]. . . . In the evening when I get home I shower, I eat something, and then instead of lying down to watch TV I go to the gym at least a little while. Not [every day] but at least 3 to 4 times a week, I try to do that [go to the gym].
Personal Responsibility for Disease Management
The information delivered provided a strong message of empowerment and self-determination, reinforcing the idea that the individuals with T2D have a major role in achieving glycemic control (Cox et al., 2013). The phrase “doing your part” was mentioned repeatedly. Stories were shared about friends and/or family members who either refused to take care of themselves or perhaps did not have access to the information needed to take control of their T2D, thus leading to poor outcomes. Statements made by the participants such as “Each person will [make changes] depending on whether they want to do it or not” and “It is the willpower of each person [that will determine whether they make changes or not]” exemplified this sentiment within the group.
Discussion
The concepts of choosing low glycemic index foods to eat, monitoring blood glucose levels, and using physical activity to achieve glycemic goals were presented to a group of Spanish-speaking individuals with T2D, using a culturally and linguistically appropriate approach. The use of simple diagram-like tools also proved to be well accepted and have been used successfully in a previous study (Coffman, Ferguson, Steinman, Talbot, & Dunbar-Jacob, 2013).
The findings from this project support those of Jimenez-Cruz et al. (2003); that is, the Mexican-style diet can be modified to a lower glycemic load diet that is acceptable to this population. Several of the strategies presented to the participants, including using fiber, fats, vinegar, and cinnamon as “sugar blockers,” were well received as one way to consume small amounts of the familiar and common foods (rice and tortillas) prevalent in the Mexican and Salvadorian culture. The participants’ new awareness of the importance of both their blood glucose levels and the patterns of fluctuation of the blood glucose was effective in motivating their reported behavioral changes over the course of the 4-week educational project.
Participants’ feedback revealed that they were internalizing the empowering messages, including the important role that the individual with T2D has over many of the outcomes of this chronic condition. This finding supports those of McCloskey and Flenniken (2010), who found empowerment to be a pervasive theme in their qualitative study on overcoming cultural barriers to diabetes control in Hispanics living in New Mexico. Our group members provided feedback that they were eager to take on the challenges of lifestyle modification after learning that it is the individual who has to manage her/his diabetes.
Quality Enhancement Strategies Used to Ensure Methodology Rigor
The researcher brought to this qualitative project not only her experiences growing up in a Spanish-speaking country but also a 29-year history of working with diverse Hispanic populations in Chicago. Member checking was accomplished, in part, by the group facilitator reviewing with the group members the previous week’s feedback to ensure that what she had understood from their discussion was indeed what information the group members had intended to convey. Credibility was enhanced through working closely with the second author, meeting with her every week to review progress, the transcripts, and key themes that were emerging.
Limitations
Limitations of this study include the potential for biases related to participant self-selection and the fact that the Spanish-speaking group facilitator also presented the content. Another limitation was that the group participants had a lower level of health literacy skills than anticipated, which provided linguistic challenges in presenting the educational content and in collecting the qualitative data.
Conclusions and Implications for Nursing Practice and Nursing Education
With the implementation of components of the Affordable Care Act have come an increased number of underserved patients accessing care (Rosenbaum, 2011), many of whom have T2D. Agencies and organizations must find evidence-based and cost-effective strategies to meet this demand. The patient-centered principles of culturally competent care should guide both practitioners in caring for Hispanic patients with T2D and those involved in program planning regarding diabetes in the Hispanic community.
The importance of health literacy in the delivery of quality care is discussed in the IOM report titled Health Literacy: Past, Present and Future (2015). This report includes a recommendation that professional schools incorporate health literacy in the curricula to ensure that our future practitioners can engage in effective information exchange with patients, their family members, and other health care professionals. The consequences of not addressing health literacy in our delivery of care are increased cost of care, poor outcomes, and lost lives (The National Academies of Sciences, Engineering, and Medicine, 2015).
Footnotes
Acknowledgements
The authors are grateful for the support and input from the University of Virginia Health System GEM research team and for the financial award from the University of Virginia School of Nursing Rodriguez Nursing Student Research and Leadership Fund. A special thank you is given to the patients and staff at the health center in central Virginia from which the project participants were recruited.
Authors’ Note
During the time the study was conducted, Dr. Clark was Assistant Professor of Nursing, University of Virginia School of Nursing, Charlottesville, Virginia.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors are grateful for the financial award from the University of Virginia School of Nursing Rodriguez Nursing Student Research and Leadership Fund.