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Data Sharing While Using a Closed-Loop System: Qualitative Study of Adolescents' and Parents' Experiences and Views
Julia Lawton1, Ruth I Hart1, Barbara Kimbell1
1Usher Institute, Medical School, University of Edinburgh, Edinburgh, United Kingdom.
Diabetes Technology & Therapeutics
|February 19, 2021
Summary
Data sharing via closed-loop systems varies significantly between adolescents and parents. Tailored support is recommended to optimize data sharing, minimize conflict, and enhance parental guidance for diabetes management.
Area of Science:
- Endocrinology
- Pediatrics
- Health Informatics
Background:
- Adolescent diabetes management presents unique challenges for data sharing between patients and parents.
- Closed-loop systems offer novel opportunities for real-time glucose and insulin data sharing.
- Understanding these dynamics is crucial for effective technology integration in chronic disease care.
Purpose of the Study:
- To explore and understand data sharing practices among adolescents and their parents using a closed-loop system.
- To identify variations in data sharing perceptions and utilization across different adolescent age groups.
- To gather recommendations for optimizing data sharing to support adolescent autonomy and parental guidance.
Main Methods:
- Thematic analysis of interviews with 18 adolescents (11-18 years) and 19 parents.
- Participants had approximately 6 months of experience with a closed-loop system.
- Focus on perceptions, value, and methods of data sharing.
Main Results:
- Significant variability observed in how parent-child dyads perceived, valued, and utilized data sharing.
- Early adolescents (11-13) and their parents favored real-time data for remote management; middle adolescents (14-16) preferred retrospective data use with parental "watchful waiting."
- Late adolescents (17+) often restricted data access; participants recommended clear ground rules for data sharing.
Conclusions:
- Data sharing practices evolve with adolescent maturity, necessitating age-specific approaches.
- Tailored input and support considering family dynamics and developmental stage are essential.
- Optimizing data sharing can minimize conflict and enhance constructive parental support in diabetes management.
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