“I Kept Coming for the Love”

Abstract

Purpose

The purpose of the study was to investigate how retention strategies employed by the Diabetes Empowerment Program (DEP) contributed to retention.

Methods

An experienced moderator conducted in-depth interviews (n = 7) and 4 focus groups (n = 29) with former DEP participants. Interviews were recorded, transcribed, and coded using iteratively modified coding guidelines. Results were analyzed using Atlas.ti 4.2 software.

Results

Participants were African American and predominantly female, low income, and with more than 1 diabetes complication. Key retention themes included: (1) educator characteristics and interpersonal skills (“The warmth of the staff … kept me coming back for more.”), (2) accessible information (“I didn’t know anything about diabetes [before]. I was just given the medicine.”), (3) social support (“I realized I wasn’t the only one who has diabetes.”), (4) the use of narrative (“It’s enlightening to talk about [my diabetes].”), and (5) the African American helping tradition (“I went not just for myself but for my husband.”).

Conclusions

While many interventions focus on costly logistics and incentives to retain at-risk participants, study findings suggest that utilizing culturally tailored curricula and emphasizing interpersonal skills and social support may be more effective strategies to retain low-income African Americans in diabetes education programs.

Introduction

Diabetes education and self-management training has been shown to increase glycemic control and decrease diabetes-related complications.¹ However, drop-out rates in basic diabetes education programs can range from 4% to 57%.² Attrition from diabetes programming is associated with worse control of diabetes and hypertension, higher body mass index (BMI), increased vascular complications, and higher rates of re-referrals for subspecialist care.^3,4

African Americans disproportionately suffer from diabetes and its complications and are also at increased risk for poor retention in diabetes education programs.^5-10 Studies about the retention of African Americans in health behavior programs, predominantly exercise and weight management interventions, have shown associations between low retention and low educational attainment, emotional and/or psychological distress, lack of social support, family responsibilities, and poor functional status.^11-14 However, there has been little research into retention rates and strategies that specifically address diabetes education, particularly among racial/ethnic minorities.^2,15 One retrospective review of the retention of rural African Americans within diabetes education demonstrated that cultural competency, follow-up, transportation provisions, and incentives were premiere in retaining patients.¹⁶ A second study describing retention of rural African Americans with diabetes within a weight management program corroborated the importance of social support and transportation provisions but also emphasized the need for success monitoring and positive reinforcement. ¹⁷ Yet, it is unknown whether these retention strategies are applicable to urban populations, and there remains an unmet need for qualitative analysis of retention from the perspective of participants as opposed to the speculative analysis of researchers. The purpose of the study was to investigate how retention strategies employed by the Diabetes Empowerment Program (DEP) contributed to retention.

Methods

Diabetes Empowerment Program

The Diabetes Empowerment Program is a culturally tailored diabetes self-management intervention serving African Americans on the South Side of Chicago.¹⁸ The DEP has been described in detail elsewhere, but briefly, it is a 10-week program that combines culturally tailored diabetes education with skills training in patient/provider communication and shared decision making.¹⁸ The DEP had successful class retention; 78% of the 51 DEP participants completed at least 7 of the 10 class sessions and 38% of participants attended all 10 sessions.¹⁸ Inclusion criteria were African American race, diagnosis of type 2 diabetes, and an established primary care physician. Participants were excluded if blind, as the audiovisual resources utilized by the program had not been appropriately tailored for this population. The DEP used a variety of strategies designed to enhance program retention. These strategies were predominantly classified under the larger categories of program logistics, participant contact, curriculum design, incentives, and acknowledgements (Table 1).^18-24

Table 1.

Retention Strategies Utilized in the Diabetes Empowerment Program

Program logistics	Sessions held at clinics to provide a familiar, accessible location and maintain connection between patient and health center staff. Timing of classes determined by availability of participants. Bus passes, parking validation provided.
Participant contact	Participants reminded 1 day prior to each class. Participants provided with a contact number to connect with a research assistant.
Curriculum design	Session length and number were modified based on adult learning theory (ie, behaviorist, cognitive, and humanist theory). Materials used were tailored to participant health literacy (use of sixth-grade literacy level materials and inclusion of audiovisual aids). Interactive, collaborative classroom environment that allowed for experiential and problem-based learning. Incorporation of African American oral tradition through the use of role-play (eg, mock doctor-patient interactions), personal diabetes testimony, and group problem solving. Lifestyle recommendations tailored to dietary, exercise habits of participants; avoided recommending unfamiliar alternatives. Community resources utilized, such as coupons, tours of local grocers, and exercise venue referrals.
Social support	Strong group dynamic facilitated by both the educators and the interactive aspects of the program. Research team member served as greeter each class, meeting participants with hugs/smiles. Class time allotted for socializing. Incorporation of African American oral tradition through the use of role-play (eg, mock doctor-patient interactions), personal diabetes testimony, and group problem solving. Encouraged spontaneous stories and questions from participants. Family members invited to class (because of central role of family in African American communities and health care decision making). Participants encouraged to share materials with others.
Incentives	$20 for surveys and clinical data (eg, blood pressure, A1C) at baseline, program’s end, and 3- and 6-month follow-up. Participants attending ≥7 classes entered into a raffle for two $100 gift cards to a local low-cost grocer. Nonmonetary incentives including diabetes self-management supplies, healthy snack each week.
Acknowledgment/affirmations	Personal achievements (eg, weight loss, improved A1C values, negotiating better familial support) acknowledged and celebrated. Graduation ceremony at which participates received framed certificate and a “goody bag” of diabetes-related supplies (eg, cookbooks) and non–diabetes-related items (eg, coffee mugs). Family and friends were invited to attend.

Study Design

Qualitative research methods using a framework approach were used to explore facilitators of diabetes education retention among urban African Americans.^25,26 Four focus groups (n = 29) and 7 in-depth individual interviews (n = 7) were conducted. Moderators experienced in interpersonal communication and not directly affiliated with the DEP led the interviews and discussions. Interviews lasted approximately 60 minutes, and each focus group lasted approximately 90 minutes. Interviews and focus groups were conducted over a 1-year period until theme saturation was met.

Setting and Participant Sample

The study was conducted in Chicago among former participants in the Diabetes Empowerment Program (parent study) 3 to 6 months after program completion. Study patients received their care at an academic medical center or a federally qualified health center affiliated with the medical center. After receiving approval from the Institutional Review Board, former Diabetes Empowerment Program participants, regardless of attendance rates, were invited by telephone (up to 3 attempts) and letter to participate in either a focus group or in-depth interview. Participants were allocated to 1 of these 2 groups based on participant’s personal schedule and availability. Each interview and focus group was held at the participants’ primary care clinic (and corresponding site of DEP). Study participants received a $20 gift card to a local grocery store as an incentive.

Study Instruments

The research team developed topic guides to explore participants’ beliefs about programmatic aspects that were key to successful retention in the DEP. Topic guides were based on retention strategies described by 2 studies: a systematic review of study retention and a qualitative investigation of retention in behavioral interventions.^27,28 This guide was utilized in both the focus groups and interviews. A moderator asked participants about various components of the program (eg, the efficacy of the shared decision-making component, the role of narrative, etc) and then specifically asked participants to identify and discuss factors that influenced their attendance. Discussion about retention began with the open-ended question “What made the diabetes program something that you were willing to come to regularly?” and was followed by probes regarding content of class, presentation of material, educators, gifts, and so on.

Data Collection and Analysis

The focus group and individual interviews were recorded and transcribed verbatim. A framework approach was used for data analysis. With this method, the analysis is inductive or “grounded” in the original accounts provided by patients, but the analysis begins deductively from preset aims and objectives.^25,26 Three coders reviewed the initial 2 focus group transcripts. These coders then met as a group to determine uniform coding themes and guidelines. Using these guidelines, 2 coders independently reviewed the focus group and one-on-one interview transcripts and met to discuss discrepancies and reach an agreement in order to ensure interrater reliability. The codebook was developed iteratively to incorporate new codes and themes and to modify and refine the definitions of the codes and themes. The coders recorded and tracked discrepancies, conclusions, and modifications and continued data collection and analysis until theme saturation had been met. A member of the research team analyzed theme saturation and coding results using Atlas.ti 4.2 software.

Results

Patient Demographics

Thirty-six of 51, or 71%, parent study participants were included in the qualitative retention analysis. All participants were African American, the majority were female (83%), and the mean age of participants was 58 years (Table 2). The majority of participants had not completed college (86%), had <$15,000 annual household income (58%), and had Medicare and/or Medicaid health insurance (69%). The participants’ mean duration of type 2 diabetes was 9.3 years, and 92% had at least 1 diabetes complication. There was no statistical difference between demographics of the DEP participants who were enrolled in the qualitative study and those who were not enrolled in the qualitative study. However, although retention among both groups was high, the retention among DEP participants included in the qualitative study was greater than among DEP participants not included in the study (97% vs 40% attended ≥70% of course, P < .001) (Table 2).

Table 2.

Diabetes Empowerment Program (DEP) Participant Demographics^a

	DEP Participants Enrolled in Retention Study (n = 36) % (absolute number)	DEP Participants Not Enrolled in Retention Study (n = 15) % (absolute number)	P-Value
Age (years)			0.43
Less than 50	25 (9)	21 (3)
50 to 64	53 (19)	71 (10)
65 and over	22 (8)	7.2 (1)
Female gender	83 (30)	60 (9)	0.07
Marital status			0.57
Single	47 (17)	33 (5)
Married/living as married	17 (6)	27 (4)
Separated/divorced/widowed	36 (13)	40 (6)
Education			1.0
Some high school or less	31 (11)	33 (5)
High school graduate	25 (9)	27 (4)
Some college	31 (11)	27 (4)
College graduate or higher	8.3 (3)	6.7 (1)
Other	5.6 (2)	6.7 (1)
Income (US $)			0.14
<15 000	58 (21)	53(8)
15 000 to 24 999	19 (7)	47 (7)
25 000 to 49 999	11 (4)	0 (0)
> 50 000	11 (4)	0 (0)
Insurance status			0.03
Private	26 (9)	0
Medicare	46 (16)	33 (5)
Medicaid	23 (8)	53 (8)
Uninsured	5.7 (2)	13 (2)
Percentage with 1 or more diabetes complication	92 (33)	100 (15)	0.55
Comorbid illnesses
Coronary artery disease	25 (9)	33 (5)	0.54
Hypertension	83 (30)	93 (14)	0.66
Hyperlipidemia	53 (19)	47 (7)	0.69
Average duration of diabetes	9.3	8.9	0.68
Attendance
7 or more sessions	97 (35)	40.0 (6)	<0.001

^aMissing 1 data point for age in group not enrolled in study and 1 data point for insurance status in group enrolled in study.

Emergent Themes

There were 5 themes that were salient throughout both the focus groups and the one-on-one interviews: educator characteristics and interpersonal skills, accessible information, social support, the use of narrative, and the African American helping tradition. These themes are explored in detail in the following (Table 3). The findings of the focus groups and individual interviews were congruent.

Table 3.

Emergent Themes of Retention in the Diabetes Empowerment Program

Educator characteristics and interpersonal skills	“[It was the] warmth and understanding of all of the staff, the teachers, the doctors, the dieticians, all of them. Greeting us, asking us how we are doing, calling us. … The love. It kept me coming back for more.”
	“I would tell them ‘I need a hug today…. ’ It was always open arms, a welcome.”
	“If it was 99 of us, she [the educator] was concerned, explaining and ready to answer any questions that any of us had…. That was even [the case] with the staff.”
	“I like the teachers. They sat, and they listened to what we had to say. They wasn’t rushing.”
	“She’s [the educator] a person that you can trust … I think that’s what really got us like we are because I respect what she says to me, and she respects what I say to her.”
Accessible information	“[When I come to class] I know I’m going to learn something that I need to know about my health…. Being honest, I didn’t know nothing about [being] a diabetic.”
	“[I came to class] because I didn’t know anything about diabetes. I was just given the medicine.”
	“Information wasn’t explained [in other diabetes courses] the way it was here. Okay, they would tell you about carbohydrates, different starches…. All they was saying is what you can eat, but the portion [sizes] wasn’t there … it just wasn’t there.”
	“If there was something that you didn’t understand, she stayed on it until you understood it. She broke it down and explained it to you in different ways until you understood.”
	“It was the people, the doctors, and the way they sit and explain everything to you.”
Social support	“You’re listening to different people that’s going through the same thing that you’re going through, and it makes it a little easier.”
	“I realized that I wasn’t the only one who has diabetes.”
	“I made so many friends here, and they don’t forget you. That’s what I like about it.”
The use of narrative	“Outside, it’s like a lot of people don’t discuss this [diabetes]. Some people don’t want you to know they have diabetes. It’s almost the shame, but it’s more enlightening to talk about it and get it in the open so everybody can know what is going on … you feel more comfortable that way.”
	“When I said what I had to say … I felt like a brick was removed from off my head because I was able to share what I was feeling.”
	“I’m in class, and a person is explaining their situation, and I’ve got something similar. I listen to their outcome. They say their sugar was sky high all the time, and they did the right thing so now it’s down. I’m like, ‘Well, I was experiencing that same thing.’”
	“We would tell about different experiences and how some of them [our classmates] had really stuck to what they were supposed to do and lost weight. And, you know, that gave me the incentive. If they can do it, now I can do it.”
	“The people were sharing the different illnesses that they’re dealing with, which was shock treatment for me. I’ve got the mind that ‘I’m going to have to deal with this later on,’ but more and more as people talk, I [realize] I should be dealing with this [diabetes] now and not later.”
African American helping tradition	“My mother was diabetic. My brother is diabetic. He just ain’t doing what he’s supposed to do. So, I’m like, I have to do this because it is not just for me. It’s for the rest of my family.”
	“I went not just for myself but for my grandchildren, my husband because he’s a diabetic.”
	“Daughters, grandkids, my sisters. I tell them how the session is and how to portion your food. You know, they doing what they do, but if they knew what they was going ahead that might really hurt them, they would stop and think about it before it happens.”
	“I think we should share with our kids. They share with their friends, and they share with their friends, and guess what? We can reverse this diabetes.”

Educator Characteristics and Interpersonal Skills

Participants cited a variety of attributes of the DEP educators that contributed to retention, but the most commonly mentioned characteristics were interpersonal in nature—warmth, concern, and willingness to listen. The majority of participants commented on the warm emotional affect and interpersonal skills of the educators and reported that their disposition influenced class retention. Participants also described the investment of the educators in the lives of the participants. The educators reportedly showed a genuine concern for the participants, their psychosocial health, and their diabetes management. Despite having a structured curriculum, many participants reported appreciating the unhurried pace of the class and the time and attention dedicated to listening to spontaneous patient stories and testimonials.

Accessible Information

Participants frequently attributed their retention in the program to the accessible and “relevant” information provided by the course. Many study participants described a lack of basic knowledge about diabetes, its management, and measures of disease control (eg, A1C testing) before enrolling in the DEP, despite having participated in prior diabetes interventions. Participants noted that these previous diabetes education programs had failed to bridge management recommendations and practical action in the way that the DEP did. The DEP curriculum was tailored to meet the needs of low-literacy adult learners, and participants reported returning to the DEP classes because they were able to access and understand the material presented. Participants also reported developing practical knowledge and skills from the class sessions, such as reading food labels, determining appropriate portion sizes, and self-administering insulin, and this skills acquisition enhanced their retention.

Social Support

Participants noted that their DEP peers were an important factor contributing to retention. They described a solidarity and emotional support that came from being in a classroom with other individuals with a common disease experience. For many participants, their peers became their friends.

The Use of Narrative

Participants reported that the use of narrative, or storytelling, in the curriculum encouraged them return to class. Participants often described storytelling as therapeutic relief. Several participants described the experiential learning that arises from narrative as particularly important to their class experience. Participants were able to problem solve together and to be inspired by the success of their peers. Participants also reported that having classroom peers share their personal experiences with diabetes helped them to recognize the reality of their own disease and the importance of managing their diabetes appropriately.

African American Helping Tradition

Many participants stated that their motivation for attending the class came from their desire to help their friends, family, and community members who were battling diabetes. Participants also described sharing the classroom information with the hope that their education could prevent disease in others.

Discussion

This is one of the first qualitative studies exploring retention in a diabetes intervention tailored for urban African Americans. Throughout the focus groups as well as the in-depth individual interviews, 5 different themes consistently arose: educator characteristics and interpersonal skills, accessible information, social support, the use of narrative, and the African American helping tradition. These results suggest that these may be key to retention in diabetes education among African Americans.

Educator Characteristics and Interpersonal Skills

Two analyses of retention of older African American adults within health promotion programs and clinical trials have indicated that personalized attention and staff rapport significantly contribute to retention.^29,30 This study, although focused on a younger population, more clearly elucidates how such rapport is established. Unanimously, participants attributed their retention to knowledgeable educators and their strong interpersonal skills, namely, their affection, concern for participant personhood and management success, and their ability to actively listen.

The DEP diabetes educators were a multidisciplinary team of the clinic staff, were familiar with Chicago’s South Side community (although not necessarily racially concordant), and were trained in the BASICS diabetes curriculum. Warm greetings, time allocation for socialization, and accommodation of personal stories and questions were crucial to social bonding.

Accessible Information

Participants consistently reported that they were learning diabetes management for the first time despite living an average of 10 years with diabetes and despite many patients having previously received official diabetes self-management education (DSME). Thus, the authors conclude that many participants had not received diabetes education that sufficiently accounted for patients’ learning style and/or cultural beliefs, modifications that the American Diabetes Association (ADA) recommends.^18,31

The DEP classes were modified for the low health literacy and experiential learning style of the target population and tailored for both the culture and community of the participants. For example, the DEP had a strong nutrition education component and tailored the recommendations to fit traditional African American culinary traditions. Participants reported that reading food labels and understanding portion sizes were 2 of the most applicable skills learned. This finding corroborates a prior qualitative study of Southern rural African Americans with diabetes, where dietary management was reported as the self-management skill with the most relevance.³²

Social Support

Participants described emotional and tangible social support as one of the most important factors contributing to retention. There can be significant emotional distress associated with diabetes, yet participants in the DEP reported feeling a sense of relief and solidarity from the relationships they formed with their co-participants.^33,34 In addition, research among African Americans with diabetes has shown that social support is associated with higher diabetes self-efficacy and improved self-management behavior, particularly in self blood glucose monitoring and dietary management.^35-38

The stimulus for the development of this interpersonal support was likely multifactorial; the homogeneity of race, community, and disease among the participants; the compassionate educators; the use of role-play and group learning; and the incorporation of narrative are all likely tied to the development of this interpersonal support among participants.

The Use of Narrative

Participants reported that the opportunity for narration or storytelling contributed to their retention in the course. The most commonly reported effect of narrative was its ability to alleviate participants’ stress. Testimonies, such as those in which participants recounted the time when they were initially diagnosed with diabetes, provided an outlet for the anxiety, shame, and/or perceived personal weakness associated with such an experience. In addition, the use of shared stories provided participants with the opportunity to problem solve. Many participants were from similar communities and socioeconomic backgrounds; the ability to hear about other participants’ barriers to management and the ingenious solutions developed were reported as being motivators and facilitators of participants’ own problem-solving skills and class retention.

Health narrative has been shown to be effective among African Americans, a population with a strong history of utilizing the oral tradition. Several studies have used narrative to disseminate health information and to promote health behavior change among African Americans, addressing issues such as breast cancer and hypertension.^39-41 While there is little in the existing literature about the use of narrative to promote diabetes behavioral change, it appears to have been an important factor to participant retention in the DEP.

African American Helping Tradition

Participants overwhelmingly cited their desire to help others as a primary motivation for attending class. Participants hoped they could empower their loved ones and community with their newly acquired knowledge and self-management skills.

This altruistic motivation is known in sociology literature as the “black helping tradition.” There are several theories regarding the evolution of this phenomenon. Some believe it evolved from the African tradition of large extended families and the slave tradition of fictive kinship; others believe that racism and ostracism have demanded resilience and led to the formation of an interdependent black peoplehood.^42-44 Whatever the origin, there is a sense of communal responsibility that exists within African American culture that has implications for retention in health interventions. Research suggests that African Americans’ willingness to participate in research and interventions is influenced by the perceived benefits to their community at large.^45-47 The DEP gave participants opportunities to educate their peers through group role-play and problem solving, encouraged participants to share their knowledge with others, and shared with participants the ways in which their participation and example can help to promote health in their community.

Summary and Implications

Successfully retaining African Americans in diabetes educational programming is an important step in improving the health of this population and reducing diabetes disparities. This study has identified key themes in the successful retention of low-income African Americans in diabetes education, which emphasize culturally tailored curricula, interpersonal skills, and social support. Although not discussed by the DEP participants, retention strategies that address logistical barriers (eg, transportation) and provide incentives are not without merit. These strategies are often integral to recruitment and make retention feasible. However, without addressing the strategies identified in this study, rates of retention will likely suffer as will the diabetes management of those participants lost to follow-up.

This study has several limitations. First, the sample consisted primarily of urban, middle-age African American women. As such, these findings may not be generalizable to all African Americans or to other racial/ethnic minorities. Second, participants were predominantly recruited to the DEP by physician referral and voluntarily chose to participate, which may have biased the study sample for patients who were more motivated to change their health behaviors. However, in real-world practice, behavioral interventions are always voluntary.

This study also has several strengths. The qualitative method used both focus groups and individual interviews, which allowed the authors to better triangulate the data. In addition, the study used multiple coders for the analysis, and each transcript was independently coded by 2 researchers; both of these methods decrease potential interpretation bias.

A key objective of Healthy People 2020 is to eliminate racial disparities in diabetes and its complications between whites and African Americans.^48,49 Addressing these disparities will require diabetes interventions, such as the DEP, that are culturally tailored and objectively improve diabetes control while simultaneously addressing barriers such as low education level, emotional distress, lack of social support, and poor functional status in order to retain their participants. While many interventions focus on costly logistics and incentives to retain at-risk participants, this study suggests that utilizing culturally tailored curricula and emphasizing interpersonal skills and social support may be more effective strategies to retain low-income, low-literacy African Americans in diabetes education programs, and subsequently reduce disparities within this population.