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Inadequate knowledge of the influence of lifestyle on clinical outcomes contributes to the difficulties many African Americans with Type 2 Diabetes Mellitus (T2DM) have in making changes to control their disease. Innovative approaches to facilitate disease management in African American patients are thus critical. This pilot study examined the feasibility of a 12-week church-based culturally targeted (CBCT) diabetes self-management education (DSME) intervention for middle-aged and older African Americans with T2DM.
The CBCT diabetes management intervention included diabetes education, stress management, coping skills and physical activity for 12 African-American adults in urban churches. Quantitative data were collected at baseline and at 12 weeks and included questionnaires and anthropometric measures. Qualitative data included focus group data.
There were significant increases among participants in medication adherence (x2 = 14.38, p = .006; Cramer’s V = .85, p = .006), healthy eating (x2 = 26.67, p = .009; Cramer’s V = .94, p = .009), and foot care adherence (x2 = 25.57, p = .003; Cramer’s v .83, p = .003). The findings suggest that the intervention had a clinically significant effect on systolic blood pressure, blood lipids, physical activity and waist circumference. Trends were noted in depressive symptom scores and hemoglobin A1c, but these changes were not significant.
Church-based culturally targeted diabetes self-management interventions may result in improved outcomes for African-American adults with T2DM. We discuss the value of community-based interventions that target behavioral changes in populations of chronically ill patients particularly those are have been historically disenfranchised and or underserved.
Over three million African Americans in the US have diabetes (Centers for Disease Control and Prevention [CDC], 2008) and they are twice as likely as Caucasians to experience complications such as blindness (retinopathy), endstage renal disease, and lower extremity amputations (Anderson-Loftin & Moneyham, 2000; Blank, Mahmood, Fox, & Guterbock, 2002; CDC, 2008). In the southern U.S., African Americans with diabetes have poorer glycemic control and higher blood pressures and they are at greater risk for diabetes-related complications and death than Caucasians (Cohen, Kamarck, & Mermelstien, 1983; Cohen & Williamson, 1988; Delamater et al., 2001). The disproportionately high rate of diabetes in African-American communities is similar to the disproportionately high rates of other chronic diseases in African Americans. These disparities have drawn attention to the need to develop accessible and efficacious programs to improve disease management and reduce the negative impact of chronic diseases like T2DM on African Americans (Faridi et al., 2009; Gaines & Weaver, 2006). This presents as a challenge to treating clinicians and researchers who provide services to such populations. Innovations in the administration and execution of interventional and research protocols that allow treatments to be more effective are needed. The current paper discusses an innovative approach to treatment and management of diabetes in African Americans towards the construction of model that better serve underserved populations.
Effective self-management of type 2 diabetes typically involves a complex regimen including healthy eating,, weight control, medications, blood glucose monitoring, exercise, and stress management over long periods (Gould, Kelly, Goldstone, & Gammon, 2001; van Tilburg, McCaskill, Lane, Edwards, Bethel, Feinglos, Surwit, 2001). Interventions that combine counseling for dietary management, weight reduction, and physical activity are pivotal in reducing morbidity associated with T2DM (Gregg et al., 2001).
A published review of 16 community-based interventions found that only ½ (8 studies) contained representative samples or discussions of populations that have been historically and disproportionately burdened by diabetes (African and Mexican Americans, American Indians, Native Hawaiians; Satterfield et al., 2003). The value of community-based and culturally-tailored interventions has been demonstrated in international populations for many years (Ockene et al., 2012; Long, 1978), but has gained recent and renewed popularity (Collins-McNeil, Holston, Edwards, Benbow, Ford, 2009).
Diabetes self-management behaviors are influenced by culture and lifestyle, including food choices (Gould, Kelly, Goldstone, & Gammon, 2001). In particular, impediments to self-management in African-Americans with diabetes includes poor understanding of the relationship between diabetes and diet, poor psychological adjustment, denial that diabetes is serious and lack of confidence, coping skills, and competence. (Gould, Kelly, Goldstone, & Gammon, 2001; Grey, Boland, Davidson, Li & Tamborlane, 2000). In addition, negative attitudes, and emotional distress such as depression and anxiety can contribute to poor diabetic control (Hill-Briggs, Gary, Bone, Hill, Levine, & Brancati, 2005; Houston, Martin, Williams, & Hill, 2006; Jiang et al., 2003).
In designing interventions for underserved populations such as African Americans with T2DM, it is important to draw on natural points of connection and sources of social support like the African-American church. From the time of slavery through the civil rights movement of the 1950’s and 1960’s to the local organizing of the 1990’s, the church has been a central institution in the African-American community (Markens, Fox, Taub, & Gilbert, 2002). African-American churches in the South now provide a wide range of prevention and treatment-oriented programs that contribute to the psychological and physical well-being of their congregants (Blank, Mahmood, Fox, & Guterbock, 2002; Sbrocco, et al., 2005). Thus, church-based diabetes self-management programs may be an effective resource for African Americans.
The study reported here therefore examined the feasibility of conducting a church-based diabetes self- management education program and the effects of the program on the appraisal of diabetes self management, level of self-care management, emotional distress, glycemic control (HbA1C) and blood pressure, lipids, waist circumference and weight.
The 12-week DSME intervention was piloted with 12 African Americans (n=10 women, n= 2 men) in the Southeastern US. Quantitative data were collected at baseline and at 12 weeks. Qualitative data were collected in a focus group at the conclusion of the study. Participants had to self identify as African American, have a medical diagnosis of T2DM, demonstrate written or verbal comprehension, and sign or make a witnessed mark indicating consent. All had to provide a statement of medical clearance from their health care provider and remain under the care of their provider for the duration of the study. The study was approved by the Duke University Institutional Review Board (IRB). Incentives for participants included payments of $20 at the initial and final assessment.
The DSME intervention was developed by advanced practice registered nurses, nurse scientists, psychologists, physicians and certified diabetes educators in collaboration with three local pastors. The program focused on seven areas of T2DM self-care: (1) healthy eating, (2) being active, (3) monitoring blood glucose, (4) taking medications, (5) problem solving, (6) reducing risks and (7) healthy coping. The program included both education and behavioral strategies directed toward helping patients achieve self-management goals.
DSME modules were adapted from the Duke University Outpatient Adult Diabetes Education Program (ADEP) which is based on the standards of diabetes care recommended by the American Diabetes Association (ADA) and the American Association of Diabetes Educators (AADE). Sessions were held once a week for 2.0 hours over 6 weeks and sessions were led by healthcare providers and clergy. Culturally targeted written materials, videotapes and presentations by racially concordant health care providers and research staff were also provided. After the sessions were completed, participants were asked to practice self management behaviors independently for 6 additional weeks.
The healthy eating module included education on the diabetes diet, label reading, meal planning, and carbohydrate counting, controlling dietary fats, portion sizes and keeping food logs to identify barriers to healthy eating. Culture specific meals (participants selected the menu) were prepared using recipes from the Diabetes Soul Food Cookbook (Gaines & Weaver, 2006). Participants selected the appropriate portion sizes and documented their food intake using logs.
The being active module focused on aerobic exercises and overall fitness, weight management and blood glucose control. Participants kept weekly exercise logs. Group discussions included barriers to being active, types of physical activity (walking, work-related exercise, leisure time physical activities, group exercises and community based exercise programs) and cultural preferences for physical activity. Participants contracted with program staff and clergy to perform the physical activity of their choice for a minimum of 30 minutes three times a week. Participants also wore a standard pedometer.
The module on self-monitoring of blood glucose included education about equipment choice and selection, the timing and frequency of testing, target values, and interpretation and use of results. Each participant received a new glucometer and 2 strips per day for the 12-week intervention period. Participants checked their glucose levels and blood pressures weekly under the guidance of a registered nurse-research assistant (RA). All readings were verified by the RA.
The medication taking module targeted diabetes specific medications, their actions, side effects, and toxicity. One-on-one medication education sessions were also held with each participant to review prescribed medications and assess their knowledge of their medications, the effects of missed or delayed doses, and proper storage of medications. The problem-focused coping module focused on problem solving skills (Grey, Boland, Davidson, Li, & Tamborlane, 2000) and was designed to assist participants to choose healthy foods or establish an exercise regimen and make appropriate decisions about diet, physical activity and medications on sick days, or when they had high or low blood glucose readings. Participants also discussed problem solving strategies for issues such as family relationships, lack of support, budgeting for medications and food, the cost of glucometer strips, over-eating and avoiding low and high blood sugars.
The risk reduction module included ways to reduce risk behaviors such as smoking, and the importance of regular eye, foot and dental examinations. Participants were taught how to identify the need for a referral and make a list of their questions or concerns in order to improve communication with their providers. They received instructions in foot care and were required to perform return demonstrations. Finally, participants had 1-hour sessions with the study endocrinologist to ask questions about their personal health, fears, and various cultural mores and folk treatments for diabetes.
The healthy coping module included education on psychological distress and ways in which it directly affects health and influences motivation to keep diabetes in control. Participants received instruction on recognition of mood changes, and on anxiety and depressive symptoms.
The emotion-focused coping modules included strategies to help participants reduce the emotional distress caused by stressful events and manage emotions that might result from stressors. Strategies included sharing personal stories and feelings related to diabetes self-management, deep breathing exercises, mental imagery, Biblical stories and examples, scriptural readings, prayers and songs. The stress management module included use of cognitive and behavioral skills to recognize and reduce stress and instruction in progressive muscle relaxation (PMR) (Surwit, et al., 2002). A licensed clinical psychologist taught participants to consecutively tense and relax muscle groups in the body, starting with the feet and progressing to the head. PMR was also combined with techniques such as deep breathing and mental imagery specific to African-American culture.
Spiritual coping was integrated into all sessions. Participants were able to interact directly with clergy or trained spiritual counselors regarding their feelings, beliefs, and attitudes about diabetes self-care practices and individual problem solving. All intervention sessions opened and closed with prayer. Activities included reading scriptures, praise and worship, prayer, meditation, and group exercises in faith, trust, and forgiveness.
The Diabetes Self-Care Practices Measurement Questionnaire (DSCPM) (Skelly, Samuel-Hodge, Elasy, Ammerman, Headen, & Keyserling, 2000) was used to collect date of birth, marital status, years of education, annual income, race/ethnicity, gender, employment, annual income and health care payer. This questionnaire also assessed healthy eating, medication taking, physical activity, self blood glucose monitoring, and foot care. Respondents were asked how frequently they performed these practices using five responses ranging from never (0%) to all of the time (100%) to. Physical activity was measured by self reported frequency of the activity/week, duration, type of activity and intensity (slow or brisk). Chronbach’s alpha for the DSCPM was 0.88, and test-retest reliability was .95 measured at a 2-week interval (Skelly, Marshall, Haughey, Davis, & Dunford, 1995).
The Self-Appraisal Diabetes Self-Management Scale (SADSM) developed for this study was a visual analogue scale (VAS) with a horizontal line, 100 millimeters (mm) in length. Participants marked on the line the point that they felt represented their perception of their current state of diabetes self management. The VAS score was determined by measuring in mm’s from the left-hand end of the line to the point that the participant marked (Gould, Kelly, Goldstone, & Gammon, 2001). The VAS measured self-appraisal of diabetes self management in the past month with scores ranging from 1–10, with 1 (10 mm) representing very poor self management and 10 (100 mm) very good self management.
The 20-item Center for Epidemiological Studies Depression Scale (CES-D) (Radloff, 1977) was used to assess depressive symptoms. CES-D scores can range from 0–60, with scores of 16 or greater indicating clinical depression (Jiang, et al., 2003). The CES-D has been shown to be reliable for assessing the number, types, and duration of depressive symptoms across racial, gender, and age categories (Radloff, 1977; Jiang, et al., 2003). High internal consistency has been reported, with Cronbach’s alpha coefficients ranging from .85 to .90 (Jiang, et al., 2003). Concurrent validity and substantial evidence of construct validity have been demonstrated using clinical and self-report criteria (Jiang, et al., 2003; Knight, Williams, McGee, & Olaman, 1997).
The Spielberger State Anxiety Subscale from the Spielberger State–Trait Anxiety Inventory (STAI) was used to measure anxiety symptoms (Patterson, O’Sullivan, & Spielberger, 1980). The STAI—State (STAI—S) is a 20-item self-administered scale that measures current general anxiety level. Responses to each item are scored from 1 to 4, with total scores ranging from 20 to 80 and higher scores indicating more anxiety. The STAI has been shown to have excellent psychometric properties for assessing anxiety in elderly persons and African Americans (Patterson, O’Sullivan, & Spielberger, 1980; Knight, Silverstein, McCallum, & Fox, 2000).
Perceived stress was measured with the Perceived Stress Scale (PSS) (Cohen, Kamarck, & Mermelstien, 1983) a validated 10-item global measure of the degree to which situations in one’s life are perceived as stressful. Scores range from 0 to 16. This measure has been used successfully with diverse samples and is psychometrically sound (Cohen & Williamson, 1988).
Anthropometric measurements were taken at baseline and at 12 weeks by trained advanced practice nurses. Height was measured without shoes to the nearest 0.1 cm. Body weight was obtained on a balanced scale. BMI was calculated by dividing body weight (in kilograms) by the square of height (in meters). Waist circumference was measured in duplicate using a measuring tape. Measurements were taken at the natural waist or at the midpoint between the bottom of the rib cage and 2 cm above the top of the iliac crest. Two measurements were made for each participant. Duplicate measurements were taken to the nearest 0.1 cm and repeated if they differed by more than 0.50 cm. The average of two or three readings was used for the analysis. Systolic and diastolic blood pressures were collected from an average of three sitting blood pressure readings done by registered nurses following standard procesures
Participant logs were used to record anthropometric measures and labs during the study period, including total cholesterol (TC), low density lipoprotein (LDL), high density lipoproteins (HDL), triglycerides (TG), hemoglobin A1c (HbA1C), capillary blood glucose, body mass index (BMI), systolic blood pressure (SBP), diastolic blood pressure (DBP), and waist circumference. RA’s obtained all anthropometric measures except for capillary blood glucose. Participants performed weekly glucose levels under the supervision of registered nurses as a part of the intervention.
Glycemic control was measured by fasting Hemoglobin A1c (HbA1c) levels at baseline and at 12 weeks. Using a standard finger-stick technique, capillary blood was collected into a capillary collection vial (AccuBase A1cTest Kit™), which was stored at 4°C. Blood samples were shipped to Diabetes Technologies, Inc (Thomasville, GA), a CLIA/Centers for Medicare and Medicaid Services (CMS) certified reference laboratory for processing. Fasting lipids (TC HDL, LDL & TG) were measured using the Cholestech L-D-X System (CHOLESTECH Corp, Hayward, CA) at baseline and at Week 12. The Cholestech L-D-X is a Clinical Laboratory Improvement Advisory Committee (CLIA) waived device.
Participants were 12 adults age 35 to 68 years (55.83 ± 9.62). Half were high school graduates, and one had graduated from college. Six were unmarried; 8 reported annual household incomes more than $30,000.
At baseline, all 12 participants had TC levels within the recommended range (163.08 ± 57.81 mg/dL), with HDL levels (38.62 ± 11.54 mg/dL) below the recommended range and LDL (105.08 ± 46.21 mg/dL) levels above the recommended level of <100 mg/dL. Mean BMI (35.92 ± 6.9 kg/m2) met the national diagnostic criterion for Class II Obesity (BMI ≥ 34.9 kg/m2) (NHLBI, NIH, 2000). The mean HgbA1c level at baseline was 7.56% ± 1.26, indicative of poor glycemic control. Mean waist circumference at baseline was 112 ± 14.2 cm. Physical activity levels (days exercised moving large muscle groups for 30 minutes or more) were lower (2.76 ± 2.0 days) than the American Diabetes Association recommended 150 minutes per week (ADA, 2008).
After the intervention, there was a mean change in SBP of 9mmHg. There was a 10 mg/dL reduction in LDL, an increase in HDL of 4mg/dL and a reduction of 26 mg/dL in TG. Participants also had an average 5.3 cm reduction in waist circumference and their average weight loss was 2.2 pounds. Participants’ physical activity increased (3.58 ± 1.62 days), and 3 participant logs indicated increases in brisk mall walking, up to 4 miles three times a week by Week 9 of the intervention. There were no significant changes in physical activity or in the anthropometric measures (Table 1).
Based on CES-D scores, the participants did not meet the criteria for clinical depression at baseline (CES-D <16; 10 ± 7.56) or post intervention. Participants had lower depressive symptom scores post intervention (CES-D <16; 8.75 ± 8.49), but the difference was not significant. Participants had low anxiety scores both at baseline (STAI; 25.83 ± 4.69) and post intervention (STAI; 24.08 ± 11.76). There was no significant difference between baseline and Week 12 scores. Participants had moderately high perceived stress levels (PSS; 13.67 ± 7.57) at baseline. Participants had lower perceived stress levels post intervention (PSS; 10.25 ± 7.87), but the difference was not significant.
At baseline, seven participants scored their diabetes self management as very good (80–100 mm), 2 indicated fair self management (40–50 mm), and 3 participants indicated very poor self management (10–20 mm). At Week 12, 10 participants scored their self management as very good (80–100mm), 1 participant indicated good self management (60–70 mm) and 1 participant indicated very poor diabetes self-management (10–20 mm). There were no significant differences in perceived diabetes self management.
At the conclusion of the study, participants showed significant improvements in adherence to diabetes self management practices, including medication and insulin administration (x2 = 14.38, p = .006; Cramer’s V = .85, p = .006), diet (x2 = 26.67, p = .009; Cramer’s V = .94, p = .009), and foot care self-care practices (x2 = 25.57, p = .003; Cramer’s V= .83, p = .003). However, there were no significant differences in physical activity and glucose monitoring (Table 2).
Feasibility and acceptability of the intervention were assessed by examining recruitment, retention and attendance rates. A total of 13 participants were recruited for the study, but 1 left the study due to hospitalization. The participant retention rate was thus 87% (n = 12) for the 12-week study period; 8 participants had 100% attendance at all study sessions. Reasons for absences were unrelated to the intervention (e.g., automobile accidents, birth of a premature grandchild, caregiver to sick aging parent, and hospitalization).
Audio tapes of focus groups indicated that the majority of participants were receptive, and they found the church-based culturally targeted diabetes management intervention acceptable. The collaborative work of minority healthcare providers (advanced practice nurses, a clinical psychologist, certified diabetes educators and a board certified endocrinologist) and church clergy was evaluated by asking participants what they liked or disliked about the program. One participant responded, “I liked that the program was just for me, you know, that it taught me about my diabetes and how it affects me as an African American and what changes I need to make in my life.” Another participant commented, “I like the group setting at the church and I hope the church continues the program as a support group.” Requests to continue the sessions were received from both study participants and church congregants with diabetes who were not able to enroll in the study. Additionally, the first author has received requests from other churches for the program. Thus, team members and church clergy concluded that the church-based culturally targeted DSME was well received.
This study tested the feasibility of a church-based culturally targeted DSME intervention for African-American adults with T2DM. The results indicate that interventions focused on diabetes self management education, physical activity, behavioral management, and emotional regulation can be implemented in the community and can lead to improvements in self care management, emotional distress and physical health in African-American adults with T2DM. The current study also reaffirms a history of investigations that are indexed by published reviews that demonstrate the value of tailored interventions for population that are not well served by standard interventions implemented in traditional medical settings (Satterfield et al., 2003).
Although changes in participants’ anthropometric measurements were not statistically significant, clinically relevant changes were noted in systolic blood pressure and lipids levels. To our surprise, we saw trends for increasing HbA1c from time 1 to time 2 evaluations. Previous studies have shown that in the general population, a small reduction in SBP as small as 5mmHg can lead to a 14% reduction in mortality due to stroke, a 9% reduction in mortality due to coronary heart disease (CHD) and a 7% decrease in all-cause mortality (Whelton, He, Appel, Cutler, Havas, Kotchen, et al., 2002). Multiple studies have shown that a reduction in LDL has been shown to lead to reductions in mortality from CHD (National Cholesterol Education Panel [NCEP], 2002). Thus if culturally targeted, church based interventions such as this were shown to be successful with larger samples, the effects on SBP and lipids could have significant implications for reducing the risk of CHD and stroke in African-Americans.
Changes in physical activity were not statistically significant. However, the majority of participants (n=9) reported meeting their goal of performing physical activity at least 90 minutes a week (30 minutes 3 times/wk) at 12 weeks. Participants indicated that they preferred group physical activities to individual exercises. They also attributed their being active to the support they found in their DSME group meetings and the support they received from their church.
These middle-aged and older African American adults with T2DM did not have clinically relevant anxiety or symptoms indicative of clinical depression, though they had moderately high levels of perceived stress at baseline. Their anxiety and depressive symptom scores and perceived stress were lower post intervention. These findings are consistent with Steinhardt et al, (2009), who found that African Americans with T2DM who participated in a church-based resiliency training intervention showed no significant changes in depressive symptoms and perceived stress scores, but did report decreases in stress and depressive symptoms post intervention. Additional prospective investigations are needed to better understand the role of culturally targeted, church-based interventions in managing psychological distress in African Americans with T2DM.
Surprisingly, at baseline the majority of participants in this study perceived themselves as managing their diabetes despite their high BMI’s and high glycemic and lipid indexes. This suggests that the perception of “good” self management in African-American adults with T2DM may not fit with the outcome indices used by most health care providers. Qualitative studies may be needed to explore perceptions of quality self management in African Americans with T2DM.
The limitations of this study include the small non-randomized sample and the limited range of demographics of the sample, and the lack of a control group. In addition, some of the data were based on self-report, and the Self Appraisal Diabetes Self Management Scale did not have test-retest data. Further, some outcomes, including HbA1C did not improve. However, generally the outcomes of this study are encouraging for the use of culturally tailored, community-based interventions to promote quality diabetes self-management behaviors among African-American adults with T2DM. We sacrifice external validity (generalizability to other populations) in the current pilot study for high internal validity, and the ability to build models directly for African Americans. It is particularly noteworthy that participants showed decreases in systolic blood pressure, lipid levels, and waist circumference, and an increase in physical activity. However, replication of the study with a larger sample and a control group are necessary to more definitively evaluate the effectiveness of this community church-based DSME intervention in improving diabetes self-management behaviors in African American adults. In the meantime, this study clearly shows that importance of collaborating with pastors or other recognized community leaders to ensure that interventions targeting behavior change are feasible and acceptable to vulnerable populations such as African Americans with T2DM.
We lastly note that it is also important to replicate our findings in other disenfranchised and underserved national and international populations towards the goal of producing additional culturally-tailored, community-based interventions. The church, as we modeled it for African Americans in the current study, may be an appropriate venue for the promotion of health for some populations. We suggest that a temple, a mosque, a home, or an outdoor public space could be more appropriate for others. Studies conceptualized, conducted and consumed by members in a cultural context are needed to increase the effectiveness of such interventions for the multitude of populations that don’t respond to generalized interventions.
The authors would like to thank Dr. Catherine Gillis, Dr. Diane Holditch-Davis, Dr. Marge Miles and Dr. Anne Skelly for their professional mentoring, consulting and guidance. We would also like to thank Elizabeth Tornquist, MS for the professional editing of this manuscript, and Ms. LaToya Winslow for providing clerical support. Most importantly, we would like to thank the churches, clergy, study participants, and the supportive and inspirational congregations that made such a study possible. This study was funded by the Trajectories of Aging and Care Center at Duke University funded by the National Institutes of Health, National Institute of Nursing Research (5 P20 NR007795, Elizabeth Clipp, PI).
Janice Collins-McNeil, Winston Salem State University, Division of Nursing, Winston Salem, NC.
Christopher L. Edwards, Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Pain and Palliative Care Center, Duke University Medical Center. Department of Medicine, Division of Hematology, Duke University Medical Center, Center on Biobehavioral and Social Aspects of Health Disparities, Durham, NC.
Bryan C. Batch, Department of Medicine, Division of Endocrinology, Metabolism, and Nutrition, Duke University Medical Center, Durham, NC.
Debra Benbow, Winston Salem State University, Division of Nursing, Winston Salem, NC.
Camela S. McDougald, B & D Behavioral Health, Inc, Durham, NC.
Daphne Sharpe, Winston Salem State University, Division of Nursing, Winston Salem, NC.