Tailoring diabetes education to make patients advocates for themselves

For best outcomes uncover solutions for each barrier to self-management

"Diabetes is the most difficult chronic illness to manage because so much of it is dependent upon the patient's ability to self-manage. Therefore, if they do not have the tools or the knowledge to do that they will not have healthy outcomes," says Carol Manchester, MSN, APRN, BC-ADM, CDE, a diabetes clinical nurse specialist at the University of Minnesota Medical Center, Fairview in Minneapolis.

She adds that the average person with diabetes tests his or her blood glucose a minimum of four times a day and can administer up to four injections of insulin daily or take a variety of oral medications. No other disease requires such careful monitoring to avoid serious long- and short-term complications that include heart attack, stroke, blindness, kidney disease, nervous system damage contributing to lower-extremity amputations, and periodontal disease.

People with diabetes must realize they are responsible for managing the disease, says Lois Exelbert, RN, MS, CDE, BC-ADM, administrative director for the Diabetes Care Center at Baptist Hospital of Miami.

Although patients require supervision by clinicians they are responsible for the day-to-day management of their disease not their physician, nurse or exercise physiologist, Exelbert says.

Patients must become their own advocates, even discussing with their physicians different medications that may be used to better control their blood glucose levels. "We are not telling patients 'you need to know everything so you can prescribe for yourself,'" she says. "However, they must know what they need, such as help from their physician to better manage blood glucose levels if they are doing their part with diet and exercise."

In order for patients to be successful at managing their diabetes they need to know almost as much as the educator, says Jane Jeffrie Seley, NP, CDE, a diabetes nurse practitioner at NewYork Presbyterian in New York City.

She says patients need to completely understand the disease process, what to eat, when to eat, how to eat, physical activity, and medications. Personal hygiene also is important because diabetes can affect all parts of the body. For example, proper brushing and flossing can reduce the risk of periodontal disease and cavities, which can be exacerbated by uncontrolled diabetes.

"The more I teach patients with diabetes, the better they will do," Seley says, adding that education needs to be done in stages, over time. People can't be given too much information at once, she says.

Many ways to structure education

Seley usually breaks the education into sections including meal planning, insulin administration if the patient is on insulin, and blood glucose monitoring. It is important for patients to understand that blood glucose monitoring provides information that will help them make adjustments in food, activity, and medication to get the best results.

Until patients' blood glucose levels are at the correct target level, Seley recommends they return every couple of weeks and once that goal is achieved that they return every three months.

One of the first questions she asks a new patient is: "From the time you get up in the morning until you go to bed at night what do you do to take care of your diabetes?"

Learning what patients already know about diabetes gives her a starting place for education. Recognized by the American Diabetes Association, the education program at the Diabetes Care Center at Baptist Hospital follows the association's guidelines, which include a 10-hour program following certain educational criteria.

At Baptist Hospital the information is covered in four sessions. During the first session the patient meets with an exercise physiologist, nurse, and dietitian to discuss personal needs. The second session is a group class that covers the generalities of diabetes and answers questions those attending have about the disease.

"Based on mutually agreed-upon lifestyle approaches [by the educators and patient] we see them in two more follow-up sessions to determine how successful they are and what needs to be tweaked," says Exelbert.

Patients are encouraged to come back every year for a "tune-up," she says.

To make sure people with diabetes have an opportunity for education there needs to be many modes of education, says Kate Lorig, RN, DrPH, director of Stanford Patient Education Research Center in Palo Alto, CA.

That is one reason the research center is currently soliciting people with type 2 diabetes to test the effectiveness of an on-line diabetes education program it developed, which is similar to two other on-line chronic disease programs developed at the center.

"The reason we decided to do an on-line diabetes program is that today less then half the people with type 2 diabetes ever get any formal diabetes education, and since it is so crucial to the care of the disease we wanted to be able to reach more people," Lorig says.

On-line programs provide an opportunity to educate people who do not have access to small group lessons or one-on-one sessions. They also reach those people who would rather learn in the privacy of their own home at their convenience, she explains.

Before people start they are given a test kit to provide blood samples for the lab to obtain data on their hemoglobin A1c and lipid levels. Also each participant fills out a questionnaire.

The information provides a baseline to monitor what impact the program has on helping individuals manage diabetes. It also provides individual information so the weekly educational content added to the on-line learning center each week can be tailored to each patient.

The program includes a communication center where participants answer a question each week such as, "What problems do you have because of your diabetes?"

Those enrolled in the study are divided into groups of 25 and given opportunities to communicate with one another to provide advice and support. During the week the groups look at the problems posted, discuss them, and make suggestions.

Each week participants make an action plan that is posted on the bulletin board. People can look at each others' action plans and make suggestions, says Lorig. In the third week of the pilot program there had been 400 messages posted by the group of 25 people.

The on-line program has a section called "My Tools" that includes such items as medication logs, blood glucose tracking charts, places to journal, and ways to figure daily calories and activity levels.

The post office provides a way for participants to send private e-mails to each other inside the program. There is also a section where people can ask for help from those who oversee the program.

There are two peer facilitators for every on-line course. The facilitators encourage people to log on if they haven't done so in a while and comment on problems and action plans. They make sure every posted message has a reply within three days. They also read the posted messages for their appropriateness.

When a participant asks a question that needs to be referred to a diabetes educator it is e-mailed to program experts and an answer is given within 24 hours. For example, a participant asked if the Atkins diet is appropriate for people with diabetes.

Techniques to improve teaching

Lorig says the information people with diabetes need to be taught is evidence-based. Researchers have conducted studies to determine how best to lower blood glucose levels. However, no one has ever really evaluated education to see if it is impacting hemoglobin A1c. Lorig says despite the fact that most believe diabetes education is very valuable, there is not a lot of supporting literature out there.

Everyone can be educated, Manchester says. "We just have to try different methods with achieving successful outcomes with different individuals," she explains. Manchester tells people that learning to manage diabetes takes persistence and patience.

It also requires that people learn to set realistic goals. For example, if they need to lose 80 pounds they should begin by losing five pounds.

Lorig says when it comes to lifestyle changes people are often taught the ideal but sometimes are so far from the ideal it is impossible for them to achieve it. So she tells them to go for the real not the ideal. The real is what they can achieve now.

For example, a woman in a diabetes class Lorig taught made an action plan to eat no more than two candy bars a day. Although the class members were horrified, Lorig followed the protocol and asked the woman how certain she was she could achieve the goal on a scale of zero to 10. The woman answered seven. Lorig later found the plan was actually a big commitment because the woman usually consumed eight candy bars a day.

Small, achievable goals are the key so the person can feel good about what he or she accomplished and move on to the next goal, whether a continuation of the present goal or a new one, says Seley.

Lifestyle changes must be made carefully. "If you take away everything they hold dear they won't come back," she explains.

Seley says the Health Belief Model is good to use for people with diabetes because of all the behavioral changes the disease necessitates. The first thing a person looks at is whether or not they think they have the disease (often people are in denial), and if they acknowledge having the disease how serious they believe it is.

If the patient does not see the severity of the disease that issue must be addressed before education can begin. Once people recognize the importance of treatment it is time to look at what benefits they perceive will ensue from managing the disease, as well as what they perceive as barriers.

When trying to determine perceived barriers always look at time, money, and effort, Seley advises. Once barriers are identified it is important to help the patient overcome each one. For example, children are not allowed to eat snacks during class time at school; yet if the student has diabetes he or she may need to eat something outside of regular meal times. Parents must work with teachers in advance to educate them about their child's diabetes management.

A spectrum of strategies

There are many strategies for effective education, whether the goal is deconstructing barriers to adopting self-management techniques or providing information required for managing diabetes.

One thing Seley has found to be true is that it is better to focus on the things people can do rather than on what they can't. For example, she does not tell people what they can't eat but what they can eat. She gives them a long list of non-starchy vegetables, such as broccoli, peppers, mushrooms, carrots, tomatoes, and spinach, and tells them to circle the ones they like. She tells them they don't have to measure these food items, while other items such as rice and potatoes must be measured.

The terms used during education sessions are important as well, says Seley. For example, the word "exercise" scares people; so she uses the less-intimidating phrase "physical activity."

Seley has found people do best when they plan ahead, looking at their schedule and determining each morning how they will eat appropriately. They need to be taught to think about what to eat and how to work physical activity into their busy schedule each day, Seley says.

Manchester adds that many people must address psychosocial aspects in order to control diabetes. For one thing, people often use food inappropriately, such as eating when they are depressed.

The support of family, friends, and colleagues is important. Manchester says people have to establish ways to help them be successful. Diabetes management is a way of life, she concludes, and the behavior changes must become a part of who the person is.

(Editor's note: The Self-Management Stanford Healthier Living with Diabetes program, an on-line workshop and study, is in the process of being evaluated. Staff members are recruiting adult study participants.

Participants must have type 2 diabetes and live in the United States. They must be willing to log on to the Internet for about a half an hour two to three times a week for about six weeks. For more information, e-mail diabetes@stanford.edu.)


For more information about diabetes self-management education, contact:

  • Lois Exelbert, RN, MS, CDE, BC-ADM, administrative director, Diabetes Care Center, Baptist Hospital of Miami. Phone: (786) 596-4930. E-mail: LoisE@baptisthealth.net.
  • Kate Lorig, RN, DrPH, director, Stanford Patient Education Research Center, 1000 Welch Road, Suite 204, Palo Alto, CA 94304. Phone: (650) 723-7935. E-mail: lorig@stanford.edu. Web site: http://patienteducation.stanford.edu/.
  • Carol Manchester, MSN, APRN, BC-ADM, CDE, diabetes clinical nurse specialist, University of Minnesota Medical Center, Fairview, 420 Delaware St., SE, MMC 732, Minneapolis, MN 55455. Phone: (612) 273-8948. E-mail: CMANCHE1@Fairview.org.
  • Jane Jeffrie Seley, NP, CDE, diabetes nurse practitioner, NewYork Presbyterian/WC, Box 136 Endocrine, F2025, 525 East 68 St., New York, NY 10021. Phone: (212) 746-6220. E-mail: jas9067@nyp.org.