Emotional Challenges Experienced along the Diabetes Technology Journey by Caregivers of Black and Hispanic/Latino Youth with Type 1 Diabetes

黑人和西班牙裔/拉丁裔1型糖尿病青少年照护者在糖尿病技术应用过程中所经历的情感挑战

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Abstract

INTRODUCTION: Caring for youth with type 1 diabetes (T1D) can be challenging for caregivers. Diabetes technology can improve glycemic outcomes and reduce the burden for youth with T1D. Little is known about the emotional challenges caregivers experience in relation to each step of the diabetes technology journey. Using qualitative methods, this study aimed to understand the emotional challenges caregivers encounter along the diabetes technology journey and to explore caregivers' attitudes toward diabetes technology, diabetes burden, and diabetes-specific family conflict using patient-reported outcomes surveys. METHODS: Nine virtual workshops were held with caregivers of black and Hispanic/Latino youth aged 2-17 years old with T1D managed with diabetes technology to elicit emotional challenges to the use of diabetes technology. All sessions were recorded and analyzed using an inductive approach. Caregivers also completed validated surveys regarding diabetes technology attitude, diabetes burden, and updated diabetes-specific family conflict. RESULTS: Emotional challenges with each step of the diabetes journey included: (1) mistrust of the device leading to fear, (2) anxiety related to possible device malfunctions, and (3) frustration with device visibility and diabetes technology troubleshooting. Most caregivers (88%) reported low diabetes burden, positive attitude toward diabetes technology (95% CI [17.6-20.2]), and low diabetes-specific family conflict (95% CI [15.2-39.5]). CONCLUSION: This study identified key emotional challenges caregivers face during the diabetes technology journey for youth with T1D. Proactively addressing emotional challenges to the adoption and use of diabetes technology may ultimately lead to greater adoption and use.

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