Conflicts of Control: Continuous Blood Glucose Monitoring and Coordinated Caregiving for Teenagers with Type 1 Diabetes

Abstract

Continuous blood glucose monitoring (CGM) is a bio-sensing technology designed to help individuals with diabetes understand and manage their blood sugar levels. Better control and management have the promise of extending and improving the quality of life with diabetes. For teenagers with Type 1 Diabetes (T1D), CGM has the potential to allow for a more collaborative T1D management and control experience by sharing real-time blood glucose data with caregivers. To understand how well CGM designs are living up to this promise and to identify potential challenges, we used the Asynchronous Remote Communities (ARC) with 16 teenagers with T1D and their informal caregivers over a 6 month period to investigate families' lived experiences with CGM and its data sharing function. We found three challenges in caregiver-teenager collaboration; lack of visibility into behaviors behind data, difficulties balancing teenage daily life with T1D control, and technical limitations of current CGM systems. We also found three issues that hinder informal caregiving coordination; unclear task assignment, difficulties in maintaining standards of care, and a lack of informal caregiver rotation. We provide a number of design implications based on these findings to better facilitate home care for teenagers' T1D.