Fighting Diabetes Disparities in Communities of Color

When your community is facing an epidemic, it’s hard to imagine how one person—or even one group of people—can make a meaningful difference. But in the case of diabetes—a serious health threat that disproportionately affects Americans of color—minority nurses can be agents of change.

The stakes couldn’t be higher. Eradicating differences in diabetes outcomes is one of the six key goals of the U.S. Department of Health and Human Services’ Initiative to Eliminate Racial and Ethnic Disparities in Health. It sets markers in three important areas: increased early intervention and screening; improved care to control the disease and treat its complications; and greater emphasis on clinical trials to prevent type 2 diabetes, the form of the disease most likely to affect minorities.

Nurses of color face a particular challenge, since diabetes is a stalker in so many of their own communities. Yet that cultural knowledge and bond with the community is what gives minority nurses such a strong advantage in identifying people at risk, educating patients and the public, and showing them that with early prevention, screening and disease management, diabetes doesn’t have to be a killer. 

As Janet Brown-Friday, MSN, MPH, RN, clinical manager of the Diabetes Clinical Trials unit at New York City’s Albert Einstein College of Medicine and vice chairman of the National Diabetes Education Program’s African American/African Ancestry Work Group, observes: “One of the best strategies with diabetes is to be able to [have patients] walk into [their] health care provider’s office with a knowledge of what’s important in terms of prevention. That means getting the word out about diabetes. Once people know, they can come prepared to ask additional questions and even request that they be tested for the disease.”

Statistics reveal the depth of the challenge. Of the nearly 21 million Americans with diabetes—including an estimated 6.2 million who are undiagnosed—African Americans, Hispanics and Asian Americans are all at greater risk for this disease and its complications than majority Caucasians, while American Indians and Alaska Natives have the highest diabetes rates in the nation—2.2 times that of whites. In one tribe in particular, the Pima Indians of southern Arizona, approximately 50% of the adult population has the disease—the highest rate of diabetes in the world.

Why the disparities? Genetics and physiology certainly play a role, even though scientists don’t yet understand all of the nuances. But it’s also true that socioeconomic factors, such as poverty and lack of health insurance, can prevent many Americans of color from accessing the kind of information, health services and lifestyle choices they need to identify, prevent and treat this disease.

Then there’s the matter of cultural and linguistic barriers. When health care providers don’t share a common language with patients, it’s difficult to discuss their symptoms or explain a treatment plan. What’s more, if providers lack awareness and understanding of the patient’s cultural background—such as health beliefs, dietary traditions and family dynamics—it’s likely that the treatment regimen and lifestyle changes they recommend will have little chance of being successful.

“As complicated as this disease process is, and as much as we need to provide basic health care, unless we have a true understanding of the context in which people live their daily lives, we aren’t going to be able to provide an appropriate level of care, regardless of our tools or our arsenal of drugs,” says Marian L. Batts-Turner, MSN, RN, CDE, research associate in medicine and faculty associate in nursing at Johns Hopkins University. “We really need to understand the [cultural] context in which they have to take care of their disease and [we must] work from their priorities. We need to take very small steps, one issue at a time. Even though we have hundreds [of issues] to deal with, we’re more likely to be successful that way.”

Step One: Reaching Out

One of the most essential of these “small steps” is raising awareness of diabetes risks and the importance of prevention and early detection—not just among individual patients but in entire communities. Getting the word out can be accomplished more effectively if you create partnerships with influential groups within the community—such as civic leaders, churches, schools, tribal leaders, etc. They can expand your circle of influence and give your message the kind of credence that will inspire others to act.
In the African American community, for instance, one of the best places to start is the church. Sunday services offer a captive audience, and when the pastor speaks, the words from the pulpit usually mean a lot. Also, many parishes have a health ministry. By engaging—and, if necessary, training—the parish nurse to deliver your diabetes message, you will have an influential spokesperson who can spread the word to others.

“As minority health care providers, it’s really our responsibility to go out and educate as many folks as possible,” says Batts-Turner. “We want to reach people in the places that hold their values.”

When Leanna Ray-Wilson, MSN, RN, CDE, who grew up on the Makah Indian reservation in Neah Bay, Wash., returned home in 2001 after a 30-year absence to serve as her tribe’s diabetes educator, she saw enough obese children and adolescents to recognize an impending health crisis. Her concern also extended to the growing number of Makah adults, sometimes as young as 30, suffering heart attacks and other complications related to undiagnosed diabetes.

The prevention message she needed to impart to the community was simple, yet chilling: “If we don’t take care of ourselves, we’re going to die off.”

Ray-Wilson convinced tribal and school leaders that the best way to address the problem was to bring diabetes education and screening to at-risk children and teens while they are still in school. By focusing on kids, she hoped to not only reduce their risk but to influence their parents and guardians as well.

It took a bit of educating, particularly with parents. But later that year, in collaboration with the local Indian Health Service clinic, Ray-Wilson successfully launched a pre-diabetes screening program at the tribe’s K-12 school. The initial program consisted of observing the students eat lunch and then checking their blood glucose two hours later for post-prandial levels over 140 mg/dL. She also measured risk factors via a supplementary diabetes education questionnaire.

The findings, which eventually formed the basis of her MSN thesis, generated enough concern—2% of that initial group was at pre-diabetic risk—to make school screening an annual and sometimes biannual event.

These days, her goal is to increase the number of participating students and to get more parents and other adults involved. Out of 300 letters sent to recruit students for the most recent screening program, a total of 68 elected to participate—the largest group to date. And Ray-Wilson sees evidence that the program is starting to change community attitudes about diet and exercise. Children, for instance, are talking about vegetables, not just eating them, when they wouldn’t do either in the past. And some parents are taking on a local doctor’s challenge to walk nearby Bahokus Peak during the annual Makah Days celebration.

Ray-Wilson hopes that when the school incorporates diabetes education into its science curriculum, interest in prevention will grow even more. “It takes years to make big changes,” she says. “These are small ones, but at least we’re getting people to be more aware. Years ago, they’d think, ‘If I have diabetes, I might as well roll over and die because I won’t be able to do this and that.’ But [we’re beginning to teach them] that diabetes is like any other chronic disease. You just have to take care of yourself.”

Speaking the “Language of Respect”

Providing culturally competent diabetes care is as much about listening and empathizing as it is about talking and delivering advice. You’ll want to focus beyond a medical history to do a thorough assessment of your patient’s cultural traditions and beliefs. It’s also important to identify—and eliminate—any cultural and linguistic barriers to communication that could impede your ability to introduce complicated therapies and drive home the diabetes management message.

William Hsu, MD, co-director of the Joslin Diabetes Center’s Asian American Diabetes Initiative and director of the center’s Asian Clinic in Boston, relies on his own fluency in Mandarin and Taiwanese when he sees patients. But he can also call on a colleague who speaks Cantonese or one of several interpreters available to the diverse Asian population—including Chinese, Korean, Cambodian, Vietnamese and Filipino patients—the clinic serves.

In addition to linguistic accessibility, the clinic provides screening and treatment specifically targeted to the needs of Asian patients. For example, Asians are often overlooked for diabetes testing because many doctors don’t realize that they are overweight at a lower body mass index (21) than Caucasians, who are screened at a BMI of 25, the standard measure of overweight.

It’s these kinds of one-size-fits-all misconceptions that drive Hsu and his colleagues to conduct continuing education workshops across the country to teach health care professionals about the unique needs and concerns of Asian Americans with diabetes. “We could see a thousand patients,” he says, “but if we can teach a thousand physicians and they can reach another thousand patients, that’s how we make our impact felt.”

Given this country’s rapidly growing diversity, nurses may not have the luxury of speaking every patient’s language or being thoroughly knowledgeable about every immigrant population’s culture. Therefore, Hsu believes, the goal should be to provide care delivered in the “language of respect.”  

For instance, if your patient can’t communicate at length in English, reframe the open-ended question you were about to ask into several leading ones. If your cultural assessment finds that a patient is taking traditional medicines, such as herbal remedies, be respectful and non-judgmental in explaining why this one is safe to continue or why that one will interfere with their diabetes therapy.

“Many people think, ‘Oh, I just need to know this population well,’” says Hsu. “Yes, knowledge is important. But you also need to adapt your skills to the specific needs of an ethnic group and adjust your attitude, since your behavior is a result of your attitude.”

Working with Community Healers

When seeking out community leaders to collaborate with on culturally competent diabetes interventions, don’t overlook the important role played by traditional healers—such as curanderos and tribal medicine men/women—as well as community health workers who are trusted and respected by the local population.

When Josefina Lujan, PhD, RN, CDE, realized a number of years ago that many of her Mexican American patients weren’t taking her advice about their diabetes, she turned to “Linda the Promotora,” acommunity lay health worker who seemed to have their ears.

Lujan, now an assistant professor at the University of Texas at El Paso School of Nursing, was so taken with this older Hispanic woman’s ability—despite her lack of formal education—to influence people in the community that she focused her doctoral dissertation on researching the effectiveness of a promotora-led intervention in reducing glycosylated hemoglobin (A1c) levels and improving the diabetes knowledge of Mexican Americans with type 2 diabetes living on the Texas/Mexico border. She conducted a study in which 150 Mexican American participants, recruited at a Catholic faith-based clinic, were randomized into two groups, one of which received a culturally specific six-month intervention delivered entirely by promotoras.

Some 70% of Spanish-speaking residents on the border are indigent, and many are so frightened of their immigration status that they won’t seek care for any health issue. Lujan’s study demonstrated, however, that both A1c levels and diabetes knowledge improved significantly among the intervention group.

Fifteen years later, the promotora-led diabetes education program remains a staple at El Paso’s Centro San Vicente clinic. While “Linda the Promotora” still teaches eight-week health promotion workshops to about 300 type 2 diabetes patients annually, additional lay health workers are also on board.

Today, however, these women are no longer just volunteers; they’re certified by El Paso Community College, which sponsors one of three accredited promotore training programs in the country. They’re also very well scripted in how they teach the class. Since the literacy rate is extremely low in this population, the promotoras rely on flip charts, audiovisuals and anatomical models. Activities drive every session, with participants learning how to understand food labels in one class and assessing their feet with hand mirrors in another.

Lujan sees the promotora model as having potential to be effective with other minority populations. Even though some health care professionals are uneasy about what these non-medically-trained workers might say to patients, Lujan begs to differ.

“I think they could be very valued members of the health care team,” she argues. “We’ve discovered that through the use of well-scripted classes, promotoras can be very, very successful—even more successful than some of our [professional] health care providers [when it comes to working with] these vulnerable populations. No longer can we [doctors and nurses] be so territorial that we think no one but ourselves can impact care. As we work together [with community lay health workers], I foresee that we can definitely have an impact in preventing diabetes in the future.”

Helping Patients Help Themselves

Teaching minority diabetes patients how to self-manage their disease involves more than just explaining their treatment regimen. You’ll also need to provide interventions—such as dietary and lifestyle changes—that are culturally appropriate while identifying and circumventing any barriers that could hinder the treatment’s success. Above all, it’s a matter of empowering patients to take control of their own health and making sure they have the tools to help them do so.

As coordinator of the Diabetes Self-Management Education Program for the Naval Medical Center Portsmouth in Portsmouth, Va., nurse practitioner Carmina Bautista, MSN, APRN, BC-ABN, CDE, provides care to an ethnically diverse military population, including fellow Filipino Americans.

By the time she meets many of her patients, they have such poorly controlled blood glucose that they’re considered noncompliant. In truth, Bautista believes, they’re just frustrated at trying but failing to manage their disease, often because health care providers aren’t seeing them in a timely fashion to advance their therapy. This “clinical inertia,” she believes, is a major reason why patients aren’t meeting their A1c and other goals.

Bautista’s interventions start with the premise that every diabetic, regardless of ethnicity or culture, wants to be well. Within that framework, she makes every effort to identify the measures that haven’t worked in the past and the barriers that might be impeding progress. “I need to know what’s been getting in the way,” she says.

What follows is a collaborative approach in which Bautista makes her patients the decision-makers in every aspect of their care. She not only negotiates an acceptable treatment plan—including lifestyle changes and a therapeutic regimen—to positively impact their disease but also teaches them to adjust their insulin on their own.

Because she believes continual progress depends not only on setting goals but on letting people know precisely how to meet them, Bautista makes it clear where her patient is headed and what it will take, in terms of diet, exercise and medication, to get there. By giving them the guidelines and skills to move their therapy along, she puts her patients in the driver’s seat. Instead of waiting for her to adjust their medication at the next appointment, she gives them the know-how—how many insulin units to take and when to take them—to get their blood sugar under better control now.

Of course, she’s in constant contact with the patients. They must email or fax their glucose readings to her at the end of the first two weeks so she can monitor their response to treatment. Then, depending on their stability and progress, she sees them in four to six weeks or every six months.

“The key is education,” Bautista emphasizes. “I spend a lot of time teaching patients how to take their medication. I don’t just say, ‘Here’s your insulin; adjust it whichever way you want.’ I tell them, ‘This is how it works and this is how to increase it.’ It’s basically about empowering them.”

It’s also about treating diabetes as the chronic disease it is by making sure patients institute changes they can work with for the rest of their lives. “Unless you have [their] buy-in your plan of treatment,” she says, “you’re not going anywhere.”

By the time they leave the clinic, her patients not only know how to self-manage their insulin regimen but how to improve their glycemic, lipid, blood pressure and other levels as well.

Bautista has been recognized nationally for her innovative approaches to increasing access and promoting patient participation in diabetes treatment. In 2004 she received a national Best Practice forDiabetic Care award for the multidisciplinary clinics she helped create at the Hampton VA Medical Center in Hampton, Virginia. She also earned the Philippine Nurses Association of America’s 2006 Clinical Nurse of the Year Award for her outstanding accomplishments in improving the quality of diabetes care. But the real winners are the culturally diverse patients she treats.

“If you put it in their hands, you actually begin to empower them,” she says. “They went for years without control and suddenly they’re seeing their blood sugar improving. They really get excited because they finally see progress toward a goal.”

Getting Families Involved

Getting patients to buy into the idea of taking control of their diabetes—rather than letting it control them—is one thing. You must also keep in mind that in some cultures, health-related decisions may involve more than just the individual patient—they’re often a family affair, requiring you to get buy-in from your patients’ relatives as well.
The first step is to identify the family gatekeepers or decision-makers and encourage their input from the start. Since your diabetic patient may perceive your dietary and lifestyle recommendations as a burden—particularly if they involve separate, more expensive meals—you need to convey to everyone just why these changes are a must.

 

Of course, the more acculturated your patients, the less they may rely on the opinions of others. But in many cases you’ll have to engage significant people—a spouse who does the cooking or a grown child in charge of an elderly parent’s care—to increase your treatment plan’s chance of success.

 

“Everybody has to be on board because if they’re not, your patient is going to be noncompliant with the regimen,” says Laura Gonzalez, MS, ARNP, an instructor at the University of South Florida in Tampa who has done research on decision-making preferences among Latinos with diabetes. “When everyone is on the same page, you have a better chance of a positive outcome because everyone is invested in your patient.”

In developing culturally competent diabetes interventions for her Latino patients, Gonzalez asks very pointed questions about the patient’s diet. She wants to know precisely what this individual consumes before explaining the particulars of carbohydrates, proteins and fats and recommending substitutions. 

She also stays away from generalized instructions like “You need to lose weight.” Nurses have to be very clear, she says, about what “losing weight” means in terms of this person’s culture and customs. Even if he or she doesn’t ask you directly, the patient may be wondering, “Can I still eat my rice and beans?” or “Can I fry foods?” If you don’t speak to those kinds of specifics, patients aren’t going to know how to change their behavior.

“You have to make sure that it’s culturally congruent,” Gonzalez explains. “We can’t be offensive but we need to express to [patients that] ‘it’s OK to eat such-and-such but perhaps you should incorporate this or you should try that as a substitution.’”

Religion and Respect

Similarly, a patient’s religious and spiritual beliefs can play a significant role in how they manage—or don’t manage—their disease. Therefore, you must be knowledgeable and respectful of your patient’s religious traditions and include them in your holistic approach to diabetes care.

For example, among some first-generation Hispanic immigrants there’s often such strong religiosity that a sick person may believe he/she has no control over the outcome of his/her illness and must leave it up to a higher power. This traditional belief is known as fatalismo.  

When Lujan and her promotoras at Centro San Vicente hear patients say, “If God wills it, it will be,” they reframe the thought by suggesting that God would still want them to take care of themselves. The diabetes education program also incorporates a religious component into its prevention efforts by sending a weekly postcard that mixes spiritual wisdom—“The Lord helps those who help themselves”—with a diabetes message, such as “Have you tested your blood sugar today?” To reinforce the faith-medicine connection, they place the promotora’s signature next to the icon of St. Vincent de Paul, the clinic’s patron saint.

“As nurses, sometimes we’re so fearful about imposing our [own] beliefs on someone that we won’t allow [patients to have] that acknowledgement,” Lujan says. “But, it’s critical, especially with Hispanics, to say, ‘Yes, I recognize that you have this religious belief and this is how we can use it to help you.’”

It’s also important to approach patients with the kind of respect that demonstrates your willingness to learn from and work with them. Even though Ray-Wilson is a member of the Makah Tribe, she wasn’t trusted immediately when she returned to the reservation after an absence of many years. To re-establish her place in the community, she watched and listened silently until she earned the respect of tribal leaders and could comfortably voice her opinions.

“Many times diabetes educators come in [to the community and tell people], ‘You need to do this, this and this,’” she says. “But it’s really important to be quiet first, so they’ll listen later to what you have to say.”

While language is often the tie that binds you with your patients, nonverbal cues send a strong message as well. You don’t need to share the same culture or language to show people that you’re truly invested in them. The universal language of respect and compassion is your strongest ally in every interaction. “If our patients feel that we care for them and we can convey that nonverbally,” says Lujan, “then they’ll likely have a better chance of adhering to their treatment plan.”

Targeted Tools:

Resources for Creating Culturally Competent Diabetes Interventions

American Diabetes Association (ADA)
www.diabetes.org
The ADA has several minority outreach initiatives that nurses can tap into for toolkits and other resource materials. These programs include Awakening the Spirit: Pathways to Diabetes Prevention & Control (for American Indians/Alaska Natives), Project Power (a faith-based education program for African American churches) and Por tu familia (for Hispanics/Latinos).

Centers for Disease Control and Prevention (CDC)
CDC projects and resources aimed at fighting diabetes disparities in minority communities include the National Hispanic/Latino Diabetes Initiative for Action (NH/LDIA) and The Eagle Books: Stories About Growing Strong and Preventing Diabetes, a series of four culturally sensitive picture books for American Indian children.

National Diabetes Education Program (NDEP)
www.ndep.nih.gov
The NDEP, a joint program of the National Institutes of Health and the CDC, offers a wide variety of resources, ranging from patient education materials in 15 Asian languages to Power to Prevent, an educational curriculum diabetes educators can use to raise awareness in African American communities. NDEP’s popular Small Steps. Big Rewards. Prevent Type 2 Diabetes program includes a variety of culturally and linguistically competent resources. One of NDEP’s newest products is The Road to Health, a free diabetes prevention toolkit for community health workers and promotores who work with African Americans and Hispanics.

Joslin Diabetes Center Asian American Diabetes Initiative (AADI)
This award-winning, bilingual (English/Chinese) Web site includes interactive tools like the Joslin Interactive Wok—which lets patients calculate the calorie, fat and sodium content of food items and traditional Asian recipes—and the Village of Health, where they can read information and watch video clips about living with diabetes.

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
www.diabetes.niddk.nih.gov
The NIDDK’s National Diabetes Information Clearinghouse is an excellent centralized source for finding population-specific statistics, information and resources. You’ll find everything from culturally sensitive, bilingual patient education materials to downloadable publications such as The Pima Indians: Pathfinders for Health and Silent Trauma: Diabetes, Health Status and the Refugee—Southeast Asians in the United States.  

Amigos en Salud®/Friends in HealthTM
www.amigosensalud.com
Created by Pfizer Health Solutions, Amigos en Salud is a culturally relevant diabetes management program designed specifically for Hispanic and African American communities. It is based on the promotore concept of using community-based lay health workers to help patients “bridge” to community and health care system resources. The Web site offers a free online toolkit to help you implement the program in your community.

Eating Soulfully and Healthfully with Diabetes
This bookby nutritionist and diabetes educator Constance Brown-Riggs, MSEd, RD, CDE, CDN, teaches African American patients—and their families—how to manage their diabetes and eat a healthy diet while still enjoying the traditional foods they love. Highlights include the Diabetes Soul Food Pyramid, exchange lists and carbohydrate counts for an extensive list of traditional Southern and Caribbean foods, and a two-week soul food menu plan.

“The Debilitator”
www.millenniumfilmworksinc.com
Winner of a 2006 dLife Making a Difference in Diabetes award, this 30-minute “edutainment” DVD by African American independent filmmaker Maurice Madden is designed to increase awareness of the impact of diabetes in the black community. A companion discussion guide for diabetes educators is available from the National Diabetes Education Program (see above).

—Pam Chwedyk