Exploring Parental Experiences of Using a Do-It-Yourself Solution for Continuous Glucose Monitoring Among Children and Adolescents With Type 1 Diabetes: A Qualitative Study

Abstract

Background: MiaoMiao (MM) is a Bluetooth transmitter, which when paired with a smart phone/device, converts the Abbott FreeStyle Libre flash glucose monitoring system into a Do-It-Yourself (DIY) continuous glucose monitor (CGM). Families are increasingly adopting DIY CGM solutions, but little is known about parent and child experiences with these add-on technologies. We aimed to explore experiences of families using MM-CGM including challenges faced and their advice to others who may choose to use the technology. Methods: Between May and July 2019, we conducted 12 semistructured interviews (in person or via video conference) with parents of children (aged ≤16 years) with type 1 diabetes using MM-CGM. Interviews were audio recorded; professionally transcribed and key themes were identified through thematic analysis. Results: Overall, parents used MM-CGM to proactively manage their child’s blood glucose. In all participants, this led to a perceived decrease in frequency of hypoglycemia. Participants reported that the visibility and easy access to blood glucose readings, glucose trends, and customized alarms on parent’s phones decreased their disease burden and improved their sleep quality. Common barriers to using MM-CGM included difficulty of the setting up process, connectivity issues, and lack of support from medical teams. Conclusion: This study highlights the potential feasibility of using a DIY CGM system like MM-CGM, which could be an empowering and cost-effective tool for enabling remote monitoring of blood glucose in real time.

Good enough? Parental decisions to use DIY looping technology to manage type 1 diabetes in children

“…Poor glycaemic control of T1D can lead to short term harms such as hypoglycaemia and diabetic shock and long-term diabetes-related health problems include damage to the small blood vessels, causing problems in the eyes, kidneys, feet and nerves (Cooper and Geyer 2009). Studies have shown that use of DIY Artificial Pancreas Systems are associated with better glucose management and higher quality of life among adults with T1D (Wu et al 2020) but mostly user-driven evidence provides insights into the efficacy and safety of these systems (Elbalshy et al 2020). The healthcare professionals we interviewed considered the potential harms of a DIY looping system, I think there's great risk that people will go on these devices and get it wrong.…”

“…A recent study found positive self-reported experiences of parents of children with T1D using a DIY system, including reduction in the fear of hypoglycemia, improvements in parental and child sleep quality, glycemic control, and decreased overall disease burden (Elbalshy et al 2020).…”

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

“…This research has mostly reported the perspectives of parents of young (preteenage) children. 1–4 These parents have highlighted benefits to remote monitoring glucose data, including reduced stress and anxiety, 1–3 greater freedom, and improved quality of life for themselves and their child 1 , 2 , 4 and increased opportunities to optimize glucose control. 2 …”

“…This research has mostly reported the perspectives of parents of young (preteenage) children. [1][2][3][4] These parents have highlighted benefits to remote monitoring glucose data, including reduced stress and anxiety, [1][2][3] greater freedom, and improved quality of life for themselves and their child 1,2,4 and increased opportunities to optimize glucose control. 2 Data sharing (remote monitoring) is likely to present distinctive issues for older children and their parents, as, from early adolescence, young people vie for autonomy and may not welcome parental oversight.…”

“…[1][2][3][4] These parents have highlighted benefits to remote monitoring glucose data, including reduced stress and anxiety, [1][2][3] greater freedom, and improved quality of life for themselves and their child 1,2,4 and increased opportunities to optimize glucose control. 2 Data sharing (remote monitoring) is likely to present distinctive issues for older children and their parents, as, from early adolescence, young people vie for autonomy and may not welcome parental oversight. 1,5 Additional issues may also arise when young people use CGM in conjunction with a closed loop-system as this technology permits followers to access insulin as well as glucose data.…”