From DSME to DSMS: Developing Empowerment-Based Diabetes Self-Management Support

Diabetes is a self-managed, chronic illness that necessitates a patient-centered approach to care.^15,16 Empowerment as a philosophy of care emphasizes a collaborative approach to facilitating the self-directed behavior change of patients. Empowerment-based DSMS needs to be based on this understanding, as well as the theories,theoretical framework, and educational and behavioral strategies that have been effective for DSME.

During the past 18 years, interventions using the empowerment philosophy and self-determination theory have been developed and tested. Self-determination theory postulates that an individual is more likely to be motivated (autonomy motivation) to develop the skills and capacity to self-regulate the behaviors needed to function effectively if that individual views those behaviors as personally meaningful.¹⁷  In the context of diabetes, autonomy motivation refers to the extent to which patients feel they are initiating and valuing specific diabetes self-management behaviors.^18,19 

The theoretical framework used to develop these interventions is autonomy support. Autonomy support is defined as the degree to which heath care providers and social support sources understand the patients' diabetes-related priorities and needs, acknowledge patients' feelings, provide meaningful self-management choices, offer relevant information, and avoid controlling patients'behavior.¹⁹ Research has indicated that patients with diabetes whose health care providers support autonomy motivation become more internally motivated to regulate their blood glucose levels, feel more competent at glucose monitoring, and show improvements in their hemoglobin A_1c (A1C)values.¹⁹  Autonomy support within the empowerment philosophy recognizes that diabetes and its self-management belong to the patient. To be effective, patients' goals,objectives, and resources must guide the development of diabetes self-management plans.^8,10,20–22 

The primary educational strategy in the development of these programs has been problem-based learning (PBL). PBL is an educational technique that encourages learners to apply relevant skills and strategies to solve self-identified problems in a simulated “real-world” environment. In contrast to traditional didactic teaching, PBL was originally developed to teach medical students a comprehensive problem-solving approach that applied classroom knowledge to clinical practice.²³  In a diverse, dynamic, and ever-changing environment, proponents of PBL argue that this approach promotes conceptual reasoning skills, empathy for different viewpoints, communication skills, collaborative working styles, and self-directed learning.²⁴ 

Studies examining the impact of PBL on learning have found students to report greater reflective skills, more meaningful learning experiences, and increased self-directed learning.^25,26 The PBL technique has particular relevance for patient-centered diabetes self-management interventions. By developing self-management skills in the context of the challenges that they encounter daily, patients derive direct benefits from these learning experiences and thereby increase their motivation for sustained self-care behaviors. PBL is a learner-centered format that fosters culturally appropriate and age-appropriate health education focusing on patient issues rather than on an educational agenda or curriculum of heath care professionals. PBL strategies have been employed in diabetes patient education, including development of dietary and exercise behavior,²⁷  daily problem-solving skills for older adults, ²⁸  and an“anchored instruction” approach to diabetes patient education with adolescents.²⁹ 

The primary behavioral strategy used in empowerment-based interventions is the five-step behavioral change model.^30,31 This model is outlined in Table 1. A unique element of this model is the emphasis on goal setting as a series of experiments. Thus, the focus is not on success or failure, but the learning that occurs as a result of the experiment. Using this model allows patients to gain insight into the barriers and supports they have and their need to make behavioral changes and ultimately to improve their ability to manage their diabetes. Providing the opportunity to reflect on these experiments and solve problems that arise with the support of the other members of the group are crucial elements of these empowerment-based efforts.

Our initial work with patients was designed to provide training in empowerment-based skills and included self-directed goal setting, problem solving, coping, and stress management, as well as obtaining social support and maintaining motivation.^20,32 This intervention resulted in significant improvements in A1C, self-efficacy in setting goals, managing stress, obtaining support, and making decisions and had a minor effect on self-management behaviors.

Although the inclusion criteria for that study required patients to have previously obtained DSME and to attend an orientation session describing the program, many clinical questions arose during the group sessions. This led to the realization that patients do not distinguish between the psychosocial,behavioral, and clinical concerns caused by their diabetes. For them, the issues of living with diabetes and treating diabetes are integrated into their experience of diabetes.

Based on that experience, we developed and evaluated the Culture-Specific,Problem-Based, Patient Self-Management Intervention^10,33 and evaluated the impact of a six-session group DSME program designed specifically for African Americans with diabetes. The study was a randomized,controlled trial featuring a pretest/posttest design with follow-up measures and 239 participants.¹⁰ Patients were randomly assigned to either a 6-week intervention group or a 6-week wait-listed control group.

This program used a question-based format to address patients' educational,behavioral, and psychosocial needs within the context of a 10-hour DSME program (Table 2). The sessions included opportunities to establish and reflect on self-management goals,discuss the emotional experience of living with diabetes, solve problems, and ask clinical questions. Culturally specific print materials were designed and distributed to support the program. At the conclusion of the study, all patients were offered the opportunity to participate in a monthly support group or to receive a telephone call from the project nurse. The average number of sessions attended was 5.1 out of 6.

The participants showed a broad array of modest improvements in A1C,cholesterol, weight, perceived diabetes knowledge, and empowerment during the 6-week study. These gains were either maintained or enhanced during the 1-year follow-up period. For patients who participated in at least one support group or had at least one follow-up phone call, there was a correlation in the desired direction between the number of follow-up contacts and their 1-year A1C values.

This study led to the development of the Diabetes Lifetime Support Program.³⁴  Several key findings from the DSME study were used in the development of the DSMS program. The first was that empowerment-based programs held in community sites are effective for African Americans with diabetes. Second, patients will seek needed information, emotional support, and behavioral strategies from health professionals and peers in a group DSME program. Third, the integration of these aspects occurs naturally and as a result of patient-generated questions and issues. The final key finding was that ongoing support enhances and sustains gains made during the DSME process.

The Diabetes Lifetime Support Program consists of weekly support groups held at community centers or churches for African Americans with type 2 diabetes. Patients are encouraged to attend as many sessions as they believe they need to attend. The format of the weekly sessions is the same as that of the DSME program (Table 2). More than 400 African-American patients have enrolled in two studies of this program in three urban communities. Weekly support groups will be offered for these patients during the next 3 years.

This program was piloted with 65 African-American patients^34,35 to determine the feasibility of attracting patients to the program and to examine the cultural relevance and acceptability (via frequency and patterns of attendance) of a DSMS intervention. The pilot study consisted of weekly 90-minute sessions conducted over a 6-month period. Patients were encouraged to attend sessions as needed or as they fit into their current life situations and circumstances.

Sixty-six African-American patients, ages 36–82 years (average age 63 years), were recruited. Seventy-nine percent were women; 26% were married; 51%had at least some college education; 48% were retired; and 24% had Medicare insurance coverage. Twenty-four weekly sessions were conducted. Eighty-six percent (n = 57) of the patients attended at least one session. Thirty-eight percent attended 12 or more sessions. Morning sessions attracted more participants, with a mean attendance of 16 (range 10–27); mean attendance for the afternoon session was 8 (range 2–18). Given that patients were encouraged to attend sessions as needed, an average attendance of 10–15 participants per morning or afternoon session was anticipated. Results show that the expected weekly attendance for the morning group(average 16, range 10–27) was exceeded, and the expectations for the afternoon group (average 8, range 2–18) were met.

Paired t-tests of pre- and post-program data found significant improvements in BMI and total, HDL, and LDL cholesterol levels. The mean A1C was 7.5% at baseline and 7.1% at follow-up, but the difference was not statistically significant. Significant increases were also found for self-reported behaviors, including following a healthy diet, spacing carbohydrate consumption throughout the day, exercising, and monitoring blood glucose.

Although DSMS programs will of necessity be implemented in a variety of ways in different communities, educators can use specific strategies to develop programs that are consistent with empowerment-based care and education. These are:

• Affirm that the person with diabetes is responsible for and in control of daily self-management decisions.

• Provide information to promote informed decision making throughout the lifetime of diabetes.

• Facilitate patients' efforts in setting and reflecting on the results of self-selected behavioral goals.

• Integrate clinical, psychosocial, and behavioral aspects of living with diabetes.

• Involve the group in problem-solving, and create opportunities for social and emotional support.

• Invite participants to include family and other supporters as desired.

• Respect the cultural, ethnic, and religious beliefs of the target population.

• Affirm that patients are experts on their own support needs.

• Affirm the ability of participants to determine an approach to diabetes self-management that will work for them throughout their lives with diabetes.

• Affirm the ability of participants to identify and solve their own problems.

Helpful hints for educators to ensure that these goals are met are listed in Table 3. In summary, as diabetes education moves from a one-time model to ongoing support models, we as diabetes educators need to develop programs that are effective,patient-centered, and tailored for the target population. Empowerment-based DSMS programs are, by definition, patient-centered. They are therefore designed to meet the educational and support needs identified by patients at that time they are experienced. Because the issues addressed are those that are raised by patients, they are also culturally relevant and consistent with adult learning theories. This makes empowerment a highly relevant approach for providing DSMS.

This article was supported in part by grants NIH5P60 DK20572 and 1 R18 0K062323-01 from the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health.