Volume 13 Number 4, 2000, Page 234
Community-Based Diabetes Self-Management Education: Definition and Case Study
Kate Lorig, DrPH, and Virginia M. González, MPH
Diabetes patient education has long been considered a crucial part of comprehensive diabetes care. There is a large body of literature suggesting that, at least for the short term, patient education improves such physiological measures as glycosylated hemoglobin (HbA1c) and blood pressure.16 Of equal importance, this literature also suggests that patient education improves the quality of life for people with diabetes.7,8 Interestingly, however, the improvements demonstrated in physiological measures may be relatively unassociated with improvements in quality of life.8
Unfortunately, once people with diabetes have received basic disease-specific education, they are then usually left on their own to manage the disease for the rest of their lives. This is especially true for people who do not have continuity of health care and who do not speak English. A primary reason for this failure is that most diabetes education is offered by specially trained diabetes educators who are located in or paid by health care organizations. While the quality of this education is good, its reach is limited because of both the scarcity of personnel and the regulations of the payment system.
One possible solution to the problems of limited health personnel and the payment system is to provide community-based diabetes self-management education. Such education, however, should be seen as an addition to, not an alternative for, more traditional forms of diabetes education, especially at the onset and until we have more information about its effectiveness.
Community-based self-management education differs from traditional education in several ways. First and probably most important, it is based on patient-perceived problems. Patients' needs determine the program content. Second, program content emphasizes the teaching of skills such as problem solving and decision making. The purpose of the education is to prepare people with diabetes to have the skills and confidence to manage their disease on a daily basis and to manage its impact on life roles and emotions. Third, such education takes place in community settings, such as churches, community centers, and schools, which are not only more convenient, but also familiar to the target population. The scheduling of the education is also based on patient rather than professional convenience. Thus, educational activities may take place on Saturday mornings, Sunday afternoons, or in the evenings. Finally, the education is delivered or taught by people who are known, trusted, culturally competent, and fluent in the language of the target community. These educators need not be health professionals, but they do need to be prepared for their role. Such preparation is provided through careful program development and training. Thus, the community-based, self-management educator may be a shop steward, a community outreach worker, a retired teacher, or a homemaker.
While there are significant differences between traditional patient education and community-based education, the two are similar in one important way. For both, the judgment about the quality of the education should be based on improvements in key health outcomes. It is our belief that, for the long term, these outcomes should be both physiological and related to quality of life.
Let us now examine in more detail one example of a community-based diabetes self-management program. At the outset, it should be noted that the following case study is used as an example and not as the only prototype for community-based education.
The Hospital Council of Santa Clara County, Calif., identified emergency room visits and hospitalizations by diabetic Latinos as a major concern. Based on this concern, the participating hospitals formed an advisory council of interested professionals and community organization leaders and also donated money for a Latino diabetes project. After nearly a year of discussion, the advisory council decided to pilot a community-based diabetes program based on a similar arthritis program with demonstrated success.9 The council asked the Stanford Patient Education Research Center to develop and evaluate this program. The following describes how this diabetes program fits the description of a community-based diabetes self-management program.
The content of the diabetes self-management program (DSMP) was determined in three ways. First, four focus groups were held with monolingual Spanish-speaking people with diabetes and their family members. Each group was asked to describe what they thought caused their diabetes, how diabetes affected their lives, what were the major problems caused by their disease, and what would help them better manage or control their diabetes. The major findings from these focus groups indicated that people did understand the importance of diet and exercise to help control their blood glucose, but they were confused about what they could eat, how much they could eat, how to prepare meals, and how to deal with temptation. They also wanted to know more about exercise, how to get started, and how and when to exercise. Other concerns included dealing with symptoms such as emotional changes, family relationships, accessing health care and resources such as monitors and strips, and communicating with their providers.
Next, three focus groups were held with diabetes nurse educators and nutritionists, who were asked to identify the key educational messages they felt were most important for people with type 2 diabetes to learn. From past experience and observation of an existing traditional diabetes education program, we learned that participants are often taught more that 100 things they should or should not do to control diabetes. Therefore, to prevent the potential overload of messages, we limited health professionals to no more than five key messages for any one topic. Examples of the key messages identified by the group for nutrition were:
At the same time, it was determined that little emphasis should be put on glucose monitoring because of the unavailability of monitoring strips for the diabetes patients we hoped to reach with this program. These patients were generally people with limited or no insurance, many of whom were not eligible for Medicare or Medi-Cal and/or had no regular source of health care.
Finally, the information obtained from the focus groups was incorporated into a 6-week course to be taught to small groups of 1015 people, 2 h week. The completed curriculum was then reviewed by health professionals from the advisory council and other colleagues in the field and pilot-tested with a small group of Latinos with diabetes outside of the targeted community. Based on these reviews and the pilot test, no major changes were made to the curriculum.
Program process: problem solving/ confidence building
The program content was broken down into smaller pieces, and skills were broken down into small steps. In each week of the course,45 topics were discussed and new skills were practiced. These were then reviewed and added to in subsequent weeks. For example, guidelines for healthy eating and practice in applying them were discussed each week, exercise and stress management occured over two sessions, and problem solving was incorporated into every session.
In addition, the program was structured in such a way as to incorporate four strategies to enhance self-efficacy. This is also known as helping participants gain confidence in their ability to deal with diabetes or as empowering patients. The four strategies to enhance self-efficacy are skills mastery, modeling, reinterpretation of symptoms, and social persuasion.10
Skills mastery is accomplished by asking participants to make a specific action plan for the week during each session. This plan is determined by participants and can incorporate any skill or behavior they wish to work on. A typical action plan might be, "This week I will not eat in between lunch and dinner for four days." At the next meeting, participants report on their action plan. If problems have occurred, then all participants are asked to offer suggestions to help solve the problems. Thus, most communication is among participants and not between individual participants and the course leaders.
Modeling occurs by having Spanish-speaking peer educators as course leaders. In this program, all peer educators were recruited from the target community. They were dominant Spanish speakers and included people with diabetes, spouses or relatives of people with diabetes, community outreach workers, and even people who had been health professionals in their native countries but now worked in different fields.
People often act based on their understanding or beliefs about their disease and symptoms; therefore, learning to reinterpret their symptoms can help to increase their efficacy in dealing with the disease. For example, this is accomplished by introducing a symptom, such as fatigue, and discussing its various causes. Fatigue can be caused by hypoglycemia, lack of physical activity, stress, poor nutrition, or depression. Thus, fatigue may be managed by trying different things, including changing diet, doing exercise, or practicing a relaxation technique. In addition to discussing the multiple causes and the interaction among symptoms, decision-making skills are discussed so program participants can learn to distinguish between the symptoms of hypoglycemia and depression or other factors and then take appropriate action. In working to change beliefs, it is important not to contradict existing beliefs but rather to expand upon them.
Finally, increasing self-efficacy through social persuasion is accomplished by asking participants to systematically report on their successes and problems in the group. By doing this, they receive support and encouragement from the group and course leaders to continue working on their action plans. Other activities done as small-group work, such as meal planning, also help to motivate and encourage participants to practice certain skills and increase their confidence.
Given this background on the development of this community-based diabetes self-management program, we will now describe the program's implementation and outcomes.
Nineteen peer educators were recruited from the community using a variety of methods, including community presentations; flyers; announcements to clinics, churches, and other organizations serving the Latino population; and by word of mouth. The peer educators received 28 h of training conducted in Spanish. In the training, they received a course manual that described both the course content and process for all the activities. Trainees followed this manual as they participated in the actual course activities; they also discussed how to handle difficult class situations and practiced teaching different course activities as presented in the manual.
Program participants were recruited in the same ways as the peer educators. They had to have type 2 diabetes, be willing to complete an informed consent form and baseline, 3-month, and 1-year questionnaires, and be able to attend the course at a site near their home. Participants were also invited to bring a relative or friend with them.
Questionnaires either were administered by telephone interview or were self-administered through the mail. A previous study had demonstrated that a similar quantity and quality of data can be collected using either or both methods.11
Because of the nature of this pilot study, we were not able to secure data on HbA1c or other physiological measures. The key outcomes measured included: 1) health behaviors (diet, exercise, relaxation, foot examination, communication with providers, glucose monitoring); 2) self-efficacy; 3) health status (self-reported health, role function, fatigue, physical discomfort, health distress); and 4) health care utilization (visits in the last 3 months to a physician, diabetes-related visits, nurse visits, home visits, emergency room visits, hospitalizations, days in hospital). With the exception of the questions about diet, self-efficacy, and glucose monitoring, which were developed for this study, all measures had been previously validated.12
In all, 18 programs were held in community centers, neighborhood clinics, and churches. Most of the programs were held on Saturday mornings and in the evenings. One hundred forty-nine people with diabetes completed a baseline questionnaire and attended one or more class sessions. Of these, 109, or 73%, also completed a questionnaire 3 months later (6 weeks after the end of the program). The 149 baseline participants attended an average of 4.3 of the 6 sessions. Table 1 describes those who attended.
In 6 weeks, program participants significantly (P <0.05) improved all studied behaviors with the exception of examining their feet. They also increased their self-efficacy for managing diabetes (P <0.0001) (Table 2). They improved on all five health status outcomes (P <0.05) (Table 3). Although there were no significant changes in health care utilization (outpatient visits, emergency room visits, hospitalizations, and hospital days), there were small decreases in all the utilization variables (P =0.250.90).
In this paper, we have attempted to illustrate the need for community-based diabetes self-management education, as well as describe one example of such education. As demonstrated by this case study, this type of education has the potential of reaching a relatively large number of people at a low cost. At the same time, it may result in important improvements in the behaviors and quality of life for people with type 2 diabetes.
Although we found no significant changes in health care utilization, there was a consistent trend toward less utilization. A longer, larger study is needed to determine the effect of self-management education on utilization.
There are still a number of important questions that must be answered. For example, can such a program reduce HbA1c over a period of several years? Can such a program reduce the use of emergency rooms and days in hospital? Is there a need for reinforcement, and if so what is the best form of reinforcement? How can such a program be integrated with traditional diabetes education? Can such a program be integrated into health care systems? How will this program work with other groups and communities?
We are now working to answer some of these questions. In the meantime, community-based diabetes patient education may prove to be an important treatment for type 2 diabetes and deserves greater study.
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12Lorig K, Stewart A, Ritter P, González V, Laurent D, Lynch J: Outcome Measures for Health Education and Other Health Care Interventions. Thousand Oaks, Calif., Sage Publications, 1996
Kate Lorig, DrPH, is an associate professor and director of the Stanford Patient Education Research Center, and Virginia M. González, MPH, is director of Spanish Programs at the Stanford Patient Education Research Center at Stanford University School of Medicine in Palo Alto, Calif.
Address correspondence and reprint requests to: Kate Lorig, DrPH, Stanford Patient Education Research Center, 1000 Welch Rd., Suite 204, Palo Alto, CA 94303.
Copyright © 2000 American Diabetes Association
Last updated: 12/00