522861
research-article2014
TDEXXX10.1177/0145721714522861African American Retention in Diabetes EducationRaffel et al
African American Retention in Diabetes Education 351
“I Kept Coming for the Love” Enhancing the Retention of Urban African Americans in Diabetes Education
Purpose
Katie E. Raffel, MD
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
Anna P. Goddu, MSc Monica E. Peek, MD, MPH From Pritzker School of Medicine, University of Chicago, Chicago, Illinois (Dr Raffel), Section of General Internal Medicine, Department of Medicine, University of Chicago, Chicago, Illinois (Ms Goddu, Dr Peek), Center for Health and the Social Sciences, University of Chicago, Chicago, Illinois (Ms Goddu, Dr Peek), Chicago Center for Diabetes Translation Research, Chicago, Illinois (Ms Goddu, Dr Peek), and Center for the Study of Race, Politics and Culture, University of Chicago, Chicago, Illinois (Dr Peek). Correspondence to Monica E. Peek, MD, MPH, University of Chicago, 5841 S. Maryland Avenue, MC 2007, Chicago, IL 60637, USA ([email protected]). Acknowledgments:
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.”).
Contributors: The authors would like to thank Yue Gao for her assistance preparing the data as well as the South Side Diabetes Team for their general support and tireless effort to study and improve diabetes outcomes on Chicago’s South Side. Funders: This research is supported by the Merck Foundation and by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) through an R18 (DK083946-01A1), the Chicago Center for Diabetes Translation Research (P30 DK20595), and the Diabetes Research and Training Center (DRTC) (P60 DK20595). Prior presentation: This study was presented as an oral abstract at the 35th Annual SGIM Conference on May 9, 2012. Conflict of Interest: To the best of our knowledge, no conflict of interest, financial or other, exists.
Conclusions While many interventions focus on costly logistics and incentives to retain at-risk participants, study findings
DOI: 10.1177/0145721714522861 © 2014 The Author(s)
Raffel et al Downloaded from tde.sagepub.com at University of Hawaii at Manoa Library on June 23, 2015
The Diabetes EDUCATOR 352
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 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 Volume 40, Number 3, May/June 2014
Downloaded from tde.sagepub.com at University of Hawaii at Manoa Library on June 23, 2015
African American Retention in Diabetes Education 353
Table 1
Retention Strategies Utilized in the Diabetes Empowerment Program Program logistics
Participant contact Curriculum design
Social support
Incentives
Acknowledgment/affirmations
• S essions 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. • Participants reminded 1 day prior to each class. • Participants provided with a contact number to connect with a research assistant. • 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. • 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. • $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. • 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.
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.
Raffel et al Downloaded from tde.sagepub.com at University of Hawaii at Manoa Library on June 23, 2015
The Diabetes EDUCATOR 354
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
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. 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.
Patient Demographics
Accessible Information
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
research-article2014
TDEXXX10.1177/0145721714522861African American Retention in Diabetes EducationRaffel et al
African American Retention in Diabetes Education 351
“I Kept Coming for the Love” Enhancing the Retention of Urban African Americans in Diabetes Education
Purpose
Katie E. Raffel, MD
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
Anna P. Goddu, MSc Monica E. Peek, MD, MPH From Pritzker School of Medicine, University of Chicago, Chicago, Illinois (Dr Raffel), Section of General Internal Medicine, Department of Medicine, University of Chicago, Chicago, Illinois (Ms Goddu, Dr Peek), Center for Health and the Social Sciences, University of Chicago, Chicago, Illinois (Ms Goddu, Dr Peek), Chicago Center for Diabetes Translation Research, Chicago, Illinois (Ms Goddu, Dr Peek), and Center for the Study of Race, Politics and Culture, University of Chicago, Chicago, Illinois (Dr Peek). Correspondence to Monica E. Peek, MD, MPH, University of Chicago, 5841 S. Maryland Avenue, MC 2007, Chicago, IL 60637, USA ([email protected]). Acknowledgments:
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.”).
Contributors: The authors would like to thank Yue Gao for her assistance preparing the data as well as the South Side Diabetes Team for their general support and tireless effort to study and improve diabetes outcomes on Chicago’s South Side. Funders: This research is supported by the Merck Foundation and by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) through an R18 (DK083946-01A1), the Chicago Center for Diabetes Translation Research (P30 DK20595), and the Diabetes Research and Training Center (DRTC) (P60 DK20595). Prior presentation: This study was presented as an oral abstract at the 35th Annual SGIM Conference on May 9, 2012. Conflict of Interest: To the best of our knowledge, no conflict of interest, financial or other, exists.
Conclusions While many interventions focus on costly logistics and incentives to retain at-risk participants, study findings
DOI: 10.1177/0145721714522861 © 2014 The Author(s)
Raffel et al Downloaded from tde.sagepub.com at University of Hawaii at Manoa Library on June 23, 2015
The Diabetes EDUCATOR 352
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 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 Volume 40, Number 3, May/June 2014
Downloaded from tde.sagepub.com at University of Hawaii at Manoa Library on June 23, 2015
African American Retention in Diabetes Education 353
Table 1
Retention Strategies Utilized in the Diabetes Empowerment Program Program logistics
Participant contact Curriculum design
Social support
Incentives
Acknowledgment/affirmations
• S essions 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. • Participants reminded 1 day prior to each class. • Participants provided with a contact number to connect with a research assistant. • 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. • 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. • $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. • 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.
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.
Raffel et al Downloaded from tde.sagepub.com at University of Hawaii at Manoa Library on June 23, 2015
The Diabetes EDUCATOR 354
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
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. 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.
Patient Demographics
Accessible Information
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
