Overall Experiences and Perceptions of Racism of Parents of Non-Hispanic Black Children With Diabetes

PurposeThe purpose of this study was to collect data from surveys and focus groups to describe the overall experiences and perceptions of racism of parents of non-Hispanic Black (NHB) children with diabetes.MethodsA concurrent mixed-methods research design was utilized. Surveys (General Intake, Brief Hypervigilance Scale) were obtained, and 5 focus groups (4 type 1 diabetes, 1 type 2 diabetes) were conducted with parents of NHB children followed at an urban pediatric diabetes center. A focus group guide was developed, and transcripts were coded and analyzed by the research team.ResultsForty-seven parents consented to participate in the study; 22 parents (47%) participated in 1 of 5 focus groups. Focus group participants were generally in good health and had higher education and income levels than nonparticipants. Hypervigilance (a heightened awareness to threat) was reported in parents, especially of those children with type 2 diabetes. Focus group themes related to experiences with diabetes management, including (1) communication with the diabetes team, (2) coping mechanisms, and (3) perceptions of medical racism.ConclusionsKey insights that emerged from the study included the importance of communicating openly with the diabetes team, the inequitable provision of diabetes technology, a desire for NHB role models, and high levels of hypervigilance in the participants. Innovative approaches, including trauma-informed care focused on patient/caregiver and parent voice, can help to address the racial disparities in the treatment and outcomes of youth with diabetes.