Data Sharing While Using a Closed-Loop System: Qualitative Study of Adolescents' and Parents' Experiences and Views

Abstract

Objective: To understand and explore data sharing practices among adolescents and their parents using a closed-loop system. Methods: Eighteen 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 analyzed thematically. Results: There was considerable variability in how parent–child dyads perceived, valued, and undertook data sharing. Parents of early adolescents (11–13 years) 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 (14–16 years) 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 behavior 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. Among late adolescents (17+ years), 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 minimize conflict and optimize 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.

Benefits and Challenges of Current Closed-Loop Technologies in Children and Young People With Type 1 Diabetes

“…In a qualitative study interviewing parents of children using a closed-loop system, they reported being more willing to allow their child to participate in activities such as school trips or sleepovers than before (21). Secondly, the remote monitoring capabilities of some closed-loop systems give reassurance to parents and children, by allowing parents to adopt a watchful waiting approach, and to intervene and support their child's decision making if required (46). Both parents and children reported closed-loop insulin delivery improving their quality of life and reducing diabetes management burden (21,38).…”

“…Clinical studies have shown that closed-loop insulin delivery significantly improves glycaemic control in this age-group (25, 51), including in those with sub-optimal glycaemic control (30), and that improvements are sustained over time (27,52). Importantly, qualitative studies of young people using closed-loop and their parents have reported significant improvements in quality of life and reduced diabetes management burden (21,46,49,50).…”

Parents’ experiences of using remote monitoring technology to manage type 1 diabetes in very young children during a clinical trial: Qualitative study

“…In keeping with findings of a study which employed psychosocial measures, 14 parents reported multiple quality-of-life benefits to using RM. As with parents of (mostly) older children, [10][11][12][13][14][15] these benefits included decreased stress and worry their child, and improved sleep. Parents also feeling more able to get on with their own lives, since RM allowed them to undertake other activities whilst caring for their child, and increased their openness to entrusting their child's care to others, a benefit other researchers have similarly reported.…”

“…When studies have consulted parents about their experiences of undertaking RM in conjunction with a CGM, they have tended to focus on those of older/adolescent children 10 and/or involved a heterogeneous sample with minimal representation of parents of very young children. [11][12][13][14][15] This is an important limitation given the distinctive challenges parents experience managing type 1 diabetes in very young children.…”

Automated Insulin Delivery Systems: Today, Tomorrow and User Requirements

“…Understanding the best way to deliver remote multidisciplinary care for people using AID systems is an important component to future safe and effective implementation and involves some complex issues for data sharing and privacy, especially for emerging adults. 39,40…”