Emotional and Physical Health Impact in Children and Adolescents and Their Caregivers Using Open-Source Automated Insulin Delivery: Qualitative Analysis of Lived Experiences

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. This study focused on 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: Qualitative data were collected through two sets of open-ended questions of a web-based multinational study survey from 60 caregivers of children with diabetes from 16 countries. The narratives were thematically analysed and a coding framework was identified through an iterative process after the alignment discussions among three coders. 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 hypoglycaemia at night-time and outside of their family home, leading to increased autonomy for the child. Simultaneously, glycaemic 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. Conclusion: 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. Funding: European Commission (H2020-MSCA-RISE-2018), Berlin Institute of Health Digital Clinician Scientist and SPOKES Wellcome Trust Translational Partnership Program. Declaration of Interest: KB received fees for medical consulting and public speaking from Roche Diabetes Care, Dexcom, Medtronic Diabetes, Diabeloop, Novo Nordisk, Sanofi Diabetes and BCG Digital Ventures; outside the submitted work. KR received fees for medical consulting and public speaking from Dexcom, Abbott, Lilly Diabetes Care, Novo Nordisk (Germany) and Springer Healthcare UK; outside the submitted work. All other authors have nothing to disclose. Ethical Approval: Ethical approval was provided by Charite – Universitatsmedizin Berlin (EA2/140/18).