Type 2 diabetes is now being designated a world-wide epidemic, and increasing prevalence rates in the United States are causing great concern. According to Health and Human Services Secretary Tommy G. Thompson, "With 16 million diabetics and counting, diabetes is growing at an alarming rate in America." The U.S. saw a 6% jump in diabetes rates in 1999 alone. Type 2 diabetes, which accounts for 90-95% of diabetes cases, has its onset during adulthood. Researchers believe that its occurrence can be accounted for by genetics less than half of the time. The rest of the cases are likely due to individual lifestyles.
Starr County is one of a handful of areas where diabetes rates are unaccountably high. A full 50% of the adults over the age of 35 in Starr County either have diabetes themselves or have a first-degree relative with the disease, which means they are at very high risk of getting it themselves. Geneticists from The University of Texas at Houston School of Public Health have been working in Starr County for decades trying to determine why the diabetes rate is so elevated there.
Exploring Intervention
In 1988, Dr. Sharon Brown, then a professor of nursing at The University of Texas Health Science Center at Houston, got involved. Brown wanted to find a way to help the residents of Starr County manage their diabetes with an intervention program that would provide education and support. Through a series of small grants from the State of Texas and the National Institutes of Health, she and her researchers began to assess the community to see what was needed.
In 1993, the National Institutes of Health requested proposals for diabetes projects focused on interventions targeting minority communities. Brown and her team of UT Houston researchers were awarded a grant of more than $1 million—at that point, the largest in UT Houston School of Nursing history—to improve the health of Mexican American residents of Starr County. The grant funded the study from 1994-98, and a subsequent grant funded a follow-up study from 1999-2004.
Dr. Sharon Brown (right), associate vice president of research at The University of Texas at Austin, has been helping residents of Starr County manage their diabetes since 1988.
Sharon Brown, now associate vice president of research at The University of Texas at Austin, says that from the beginning, "Our intent has been to address the cultural needs of Mexican Americans with diabetes, because to this day in many communities around the U.S., Mexican Americans are still being misadvised in terms of what they need to do to manage their condition on a day-to-day basis."
She says that intervention in Mexican American communities has been slow because of the prevailing stereotype that Mexican Americans will not follow medical advice. Often there is no access to adequate medical care, and advice about the disease—in some cases uninformed—comes from their family and other people with diabetes. Brown's study is "an attempt to teach them how to take proper care of their diabetes themselves."
The first phase of the study created an intensive, year-long program focused around education and social support from family and friends. The current second phase is testing a refined version of the intervention in an attempt to create an efficient, cost-effective strategy that can be integrated in medical care sites, such as community clinics. In both phases, participants are between the ages of 35 and 70 years old. They are selected from a research database of known diabetics in the community that was developed by the UT Houston researchers, and willing participants are required to attend intervention classes with a spouse or first-degree relative. Participants and their family members become part of a small group that works for the duration of the study with intervention teams made up of bilingual Mexican American nurses, dietitians, and community workers.
Helping from Within the Community
Sharon Brown received her Ph.D. in nursing from The University of Texas at Austin in 1987 while serving as an assistant professor of nursing at The University of Texas Health Science Center at Houston. In 1995 she moved to Austin to become associate dean of research and the James R. Dougherty, Jr. Centennial Professor for the School of Nursing. From the beginning of her research in Starr County, Brown recognized that she would be entering the community as an outsider. But she didn't want to create an intervention program where people arrived from elsewhere and tried to influence a community distant from their own.
All intervention team members are Mexican American, bilingual residents of the border community. Most of the instructors are full-time employees elsewhere and work on the intervention as a second job in the evenings. The intervention team members in Starr County are University of Texas employees, but they are also Starr County residents. When the program was first started in 1994, they came to Houston for a week-long training program in diabetes care. Over the years Brown herself has been involved in the ongoing training of the instructors and data collectors, and also in providing health advice for study participants. But she has resisted the urge to send nurses and dietitians from Houston or Austin to do the work, relying instead on professionals from the border area.
Alexandra Garcia (right), a Ph.D. student in the School of Nursing at The University of Texas at Austin, has been involved with the Starr County diabetes study during her entire doctoral program.
For nursing students at The University of Texas at Austin, the program has provided a chance to see how an intervention program works first-hand. Undergraduate students and summer research interns have visited Starr County as part of the School of Nursing community health program or as part of some of the research training grants that the School has received. While in Starr County, students have observed intervention and data collection sessions, toured the Texas-Mexico border area, including the colonias where the diabetes study draws some of its participants, and talked to the study's nurses, dieticians, community workers, research office staff and participants about diabetes health issues.
Although there is a research field office in Rio Grande City, interventions are held in churches, schools and day care centers throughout the community. Brown says they want to "take the program to the participants." This is a significant opportunity for the residents of Starr County, because across the country only 10% of people with diabetes have access to, or can afford, diabetes self-management education programs.
Class size is limited to 16, with 8 diabetics and 8 support people. Alexandra Garcia, a Ph.D. student in nursing at The University of Texas at Austin who has been involved with the study during her entire doctoral program, notes that the classes can become a social event. Members of the group get to know one another and interact frequently among themselves and with the intervention team.
Class topics range from teaching participants how to take their medications to learning how blood sugars react to various things such as exercise, stress, medicines, and foods. Participants are taken on field trips to the local grocery store, given cooking demonstrations and taught how to introduce new foods with less fat and more fiber into their diets, as well as how to modify their favorite recipes to make them more healthy. The focus is on helping participants to integrate diabetes care into their everyday lives and to do so in a way that they can sustain.
In addition to information, participants are given free monitors to help them keep track of their blood sugar levels and free lab work, essential elements of diabetes care that are sometimes unaffordable for patients. The grant money covers these services, and monitor companies have often donated their equipment. The program does not provide medications, but it does help participants to fill out paperwork for other programs that offer free supplies and medicine. The intent is to make the diabetes program as comprehensive as possible, giving participants what they need to improve their means of living with the condition.
Seeing Results
And it is working. The 1994-98 phase of the study included 502 participants, and results indicate that the study had a significant impact on improving people's diabetes control. Blood sugar levels, which in this community were very high, were brought down significantly. Even more important was a reduction in their glycosylated hemoglobin levels, a measure of what blood sugar levels have been over the past two to three months and a more stable indicator of progress. Other research has shown that for every half percentage point decrease in glycosylated hemoglobin, the risk of complications from diabetes is reduced 35-50%. The Starr County intervention achieved a 1.4 percentage point difference between the treatment group and the comparison group at 6 months.
Juan Treviño, a dietician from Starr County, provides nutrition education services for participants of the diabetes study at a local church in Rio Grande City.
Brown admits that there are some complexities in measuring the success of this program. Most diabetes research has been done on non-Hispanics and the results don't account for the differences that race can present. In the population being studied in Starr County, the glycosylated hemoglobin and blood sugar levels begin at such high levels that bringing them down to a level considered normal in other populations is extremely difficult.
The glycosylated hemoglobin measurement essentially tracks how much glucose attaches to the hemoglobin in the red blood cells. The target level is less than 7%. In most places around the country, a number over 8% would cause concern. In the population in Starr County, the levels are regularly over 10%, and the program has had participants who came in with levels up to 18%.
The Starr County diabetes intervention program has maintained an impressive 90% retention rate for the data collection sessions. Almost everyone who starts the program stays for the required length and reports for data collection sessions that are scheduled on a regular basis. In fact, the program has been strongly embraced by the people of Starr County. When the grant was refunded for a follow-up study from 1999-2004, the goal was to make beneficial adjustments to the intervention. In focus groups, the program received very few criticisms and was so resoundingly popular that participants were anxious to have their friends and family members join.
Looking at the Long Term
Sharon Brown and her colleagues realized that a year-long program presented difficulties for their participants. They are testing shorter versions of the program to enable easier transference into clinical sites.
While the research field office in Starr County will be maintained into the future, and the intervention program will continue to hold classes in the community, the ultimate goal is to integrate the program into clinics and hospitals so that a greater number of people with diabetes can benefit from learning diabetes self-management.
One step in making the program more widely accessible was to develop a series of educational videotapes. Because some of the participants didn't read or write English or Spanish, video became an efficient alternative for disseminating information to them. However, nothing was available in Spanish at an appropriate learning level, so the UT Health Science Center at Houston funded a series of seven videotapes produced in both Spanish and English and filmed in Starr County. Designed for a general audience, the tapes give information and stimulate discussion in classes. The videos have been widely distributed around the country and have been donated to clinics all over South Texas.
In fact, the Starr County diabetes research study has prompted a number of similar studies throughout the U.S., and Brown is contacted on a nearly weekly basis to consult on new projects. When the Mayo Medical School wanted advice on their diabetes education program, it turned to Sharon Brown. She was the first nurse to be invited to the medical school in Rochester, Minnesota, as a visiting professor. This honor is one of many bestowed on her. She repeatedly won the Dean's Teaching Excellence Award at UT Houston, as well as the Faculty Research Award at The University of Texas at Austin. In 1998 she became a fellow in The American Academy of Nursing.
However, none of this has shifted Brown's focus from Starr County. One of the things she is most proud of is the way she and her program have been accepted in the community. The long-term relationships she has developed are important to her. She believes strongly that the research must always be tailored to the community itself and how it will benefit the citizens.
A Legacy in Starr County
The Starr County Health Studies Research Office in Rio Grande City opened in 1980 and continues to serve the community by providing diabetes-related research and screening.
One of the greatest legacies of the study, Brown contends, is that "if we walked away today, all of the nurses and dieticians that have worked on the project now have considerable experience working with adults with type 2 diabetes. Many of them are Certified Diabetes Educators." Becoming a Certified Diabetes Educator, a relatively new certification, requires a college degree, two years of experience working with diabetes education, and a comprehensive examination. These professionals, who were trained through Brown's study, are prepared to teach people with diabetes how to manage their condition over the long term.
Brown is also seeking additional funding opportunities to establish a permanent diabetes education center for the Starr County community, where classes could be held. In addition, she hopes to integrate what they have learned into hospital and clinic settings and to train professionals to support diabetics in a realistic way, taking into account a patient's culture and individual needs.
Dr. Sharon Brown reflects that when she was a student in nursing school, she learned early on that diabetes was one disease you could do something about and make a significant difference in people's lives. "What we try to get the people with diabetes to do is to practice what we all should be doing in terms of healthy lifestyles. So I find it very rewarding, particularly with those individuals in the project who have made monumental changes in their health."
Those monumental changes mean longer, healthier lives for the people of Starr County in the Rio Grande Valley. Their diabetes care has been greatly improved because Dr. Sharon Brown and her University of Texas team dedicated themselves to that community and got everyone involved.
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