Data sharing whilst using a closed-loop system: Qualitative study of adolescents’ and parents’ experiences and views

Julia Lawton, Ruth Hart, Barbara Kimbell, Janet M Allen, REJ Besser, CK Boughton, Daniela Elleri, Julia Fuchs, A Ghatak, Tabitha Randell , Ajay Thankamony, Nicola Trevelyan, Roman Hovorka, David Rankin

Research output: Contribution to journalArticlepeer-review

Abstract

Objective: To understand and explore data sharing practices amongst adolescents and their parents using a closed-loop system.

Methods: 18 adolescents (aged 11-18 years) and 19 parents were interviewed after adolescents had ≥6 months experience of using a closed-loop system which permitted them to share glucose and insulin data with parents/caregivers. Data were analysed thematically.

Results: There was considerable variability in how parent-child dyads perceived, valued and undertook data sharing. Parents of early adolescents (11-13yrs) reported making extensive use of ‘real time’ data to remotely manage their child’s diabetes and early adolescents described needing and wanting this input. Parents of middle-adolescents (14-16yrs) described making greater use of retrospective data. To avoid conflict and encourage and support their son/daughter’s autonomy, these individuals reported practicing watchful waiting and only intervening after concerns about a pattern of problematic behaviour or their child’s safety arose. Middle-adolescents indicated that data sharing had been done primarily for the benefit of their parents, although they also noted quality of life benefits for themselves. Amongst late adolescents (17+yrs), parents were simply remote because their son/daughter had not permitted access to their data. Participants recommended clear ground rules be put in place about when, and how, data sharing should be used.

Conclusions: To help parent-child dyads use data sharing in ways which minimise conflict and optimise constructive parental support, we recommend tailored input and support, which takes account of family dynamics, the young person’s developmental maturity and the different ways in which data are used across the adolescent age range.
Original languageEnglish
JournalDiabetes Technology & Therapeutics
Early online date19 Feb 2021
DOIs
Publication statusE-pub ahead of print - 19 Feb 2021

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