JMIR Publications

ABSTRACT

Background:

Given the limitations in access and license status of commercially developed automated insulin delivery (AID) systems, open-source AID systems are becoming increasingly popular amongst people with diabetes, including children and adolescents.

Objective:

This study aimed to investigate lived experiences, physical and emotional health implications of children and their caregivers following the initiation of open-source AID, their perceived challenges, and sources of support, which have not been explored by the existing literature.

Methods:

Data were collected through two sets of open-ended questions of a web-based multinational study survey from 60 families from 16 countries. The narratives were thematically analysed and a coding framework was identified through an iterative alignment.

Results:

A range of emotions, improvements of quality of life and physical health were reported as open-source AID enabled the families to shift their focus away from diabetes therapy. Caregivers were less worried about hypoglycemia at night-time and outside of their family home, leading to increased autonomy for the child. Simultaneously, glycemic outcomes and sleep quality of both child and caregiver improved. Nonetheless, the acquisition of suitable hardware and technical set-up could be challenging. The #WeAreNotWaiting community was the primary source of practical but also emotional support.

Conclusions:

Our findings show the benefits and transformative impact open-source AID and peer-support have on children with diabetes, their caregivers, and families, where commercial AID systems are not available or suitable. Further efforts are required to improve effectiveness, usability, and facilitate access for children with diabetes worldwide to benefit from this innovative treatment.