Fear, medical mistrust may cause disparities in diabetes device uptake for Black youths
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Black adolescents with type 1 diabetes and their parents believe fear, lack of exposure and mistrust of the medical community are some of the reasons racial disparities exist with diabetes device use, according to study findings.
“We found multiple reasons why Black adolescents with type 1 diabetes may be less likely to utilize diabetes technology by interviewing both adolescents and their parents,” Shana R. Mencher, MD, a pediatric endocrinologist at Children’s Hospital at Saint Peter’s University Hospital in New Brunswick, New Jersey, and formerly a pediatric endocrinology fellow at Yale University School of Medicine, told Healio. “There are specific individual, cultural and familial factors playing a role, most notably the additional stigma from the visibility of devices drawing negative attention to their condition. In addition, most had little familiarity with type 1 diabetes and more exposure to type 2 diabetes. Therefore, there are many misperceptions combined with mistrust of the medical community, both historically and currently, contributing to disparities in uptake of devices.”
Mencher and colleagues interviewed 19 Black adolescents aged 12 to 19 years with type 1 diabetes for at least 6 months (mean age, 15.8 years) at the Yale Children’s Diabetes Program and 17 of their parents. Interviews were conducted from November 2019 to June 2020. The interviews included open-ended questions on the participant’s experience with type 1 diabetes management, thoughts on diabetes device use, their experience with devices and why they believed racial inequities with device use existed. Responses were transcribed and grouped into descriptive themes.
The findings were published in Diabetes Technology & Therapeutics.
Adolescents and parents gave responses revolving around similar themes. When discussing type 1 diabetes management, both adolescents and parents reported it became easier over time. Most youths said their school nurses played an important role in diabetes management. Single parents reported several challenges, such as a lack of financial resources, support and time. Another challenge revolved around family traditions and foods that may make diabetes management more challenging.
Most participants based their decision to use diabetes devices on recommendations from their health care provider. While some praised devices for their ease of use and remote management, others said they were incontinent and laborious. A big concern for some adolescents was how devices called attention to their diabetes, leading to embarrassment and a fear of stigma.
When asked why Black adolescents may not want to use diabetes devices, several reasons were listed, including fear, a lack of exposure to devices, mistrust of the medical community, financial barriers and visibility. Some respondents were unaware racial disparities in device use existed, while others felt individual characteristics played a bigger role than race in one’s decision to use devices.
“I had the privilege of working with Marcella Nunez-Smith, MD, MHS, who has expertise in the field of diversity and inclusion,” Mencher said. “She was surprised to hear that a few participants were unaware of these disparities, since inequities are ubiquitous in all aspects of life among those from marginalized groups.”
The researchers said additional research is needed to compare the findings with experiences from other Black adolescents in other parts of the country as well as to compare the experiences of Black youths with those from other racial and ethnic groups.
“I believe this is just the tip of the iceberg as these findings were drawn from a small group of participants at a single academic center,” Mencher said. “These findings need to be corroborated with others from different age groups as well as those using more advanced technology and among broader racial and ethnic groups as well.”
For more information:
Shana R. Mencher, MD, can be reached at shanarflicker@gmail.com.
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