Stigma as a Barrier to Participant Recruitment of Minority Populations in Diabetes Research: Development of a Community-Centered Recruitment Approach

Abstract

Background The development of evidence-based care geared towards Black and Latina women living with uncontrolled type 2 diabetes is contingent upon their active recruitment into clinical interventions. Well-documented impediments to recruitment include a historical mistrust of the research community and socioeconomic factors that limit awareness and access to research studies. Although sociocultural and socioeconomic factors deter minorities from participating in clinical research, it is equally important to consider the role of stigma in chronic disease intervention studies. Objective We aim to share our discovery of diabetes-related stigma as an underrecognized impediment to recruitment for the Women in Control 2.0 virtual diabetes self-management education study. Methods Our initial recruitment plan used traditional strategies to recruit minority women with uncontrolled type 2 diabetes, which included letters and phone calls to targeted patients, referrals from clinicians, and posted flyers. After engaging a patient advisory group and consulting with experts in community advocacy, diabetes-related stigma emerged as a prominent barrier to recruitment. The study team reviewed and revised recruitment scripts and outreach material in order to better align with the lived experience and needs of potential enrollees. Results Using a more nuanced, community-centered recruitment approach, we achieved our target recruitment goal, enrolling 309 participants into the study, exceeding our target of 212. Conclusions There is a need for updated recruitment methods that can increase research participation of patients who experience internalized diabetes stigma. To address disparities in minority health, further research is needed to better understand diabetes-related stigma and devise strategies to avert or address it.

A Lifestyle Intervention to Delay Early Chronic Kidney Disease in African Americans With Diabetic Kidney Disease: Pre-Post Pilot Study

“…This potentially propagates existing disparities in a high-risk high-cost population. Low participation of African Americans in clinical trials is often attributed to poverty, lack of accessibility, lack of information on clinical trials, and chronic disease–related stigma [ 45 , 46 ]. There is a need to overcome these barriers and increase the participation of African Americans in clinical trials.…”

“…There is a need to overcome these barriers and increase the participation of African Americans in clinical trials. Ongoing clinical trials are exploring novel community-based screening recruitment methods for African Americans with CKD [ 46 , 47 ]. More intervention studies that focus on high-risk patients incorporating such novel recruitment strategies are needed.…”

Effectiveness of an Immersive Telemedicine Platform for Delivering Diabetes Medical Group Visits for African American, Black and Hispanic, or Latina Women With Uncontrolled Diabetes: The Women in Control 2.0 Noninferiority Randomized Clinical Trial

“…We identified participants from Boston Medical Center and a local community health center using a weekly electronic medical record query. We contacted eligible participants with an introductory letter and follow-up call [ 21 ]. Additional recruitment strategies included participant or provider referrals and posted flyers.…”

Reimagining Empowerment: A Critical Review of Empowerment Theory in Diabetes Research

“…To reiterate: the dominant construct of empowerment understands self-management as a set of strategies that once adopted will move a patient to change their health behaviors. However, as is noted in sociocultural-focused diabetes studies, self-management does not happen in a vacuum [16,40,41]. Socially, the interventions for improving self-management through empowerment principles, like action-planning, goals setting, and problem solving [37,38], identifying and addressing personal challenges [39], and integrating coping strategies [40], actually work to authenticate the stigmatization faced by people with diabetes.…”

“…When our empowerment research fails to account for the social and community aspects of power, they also fail to challenge dominant discourses and inequities actively reproducing power differentials. This stigmareproducing dynamic has been shown to negatively impact research recruitment in minority populations, as well [41].…”