TY - JOUR AU - Braune, Katarina AU - Krug, Niklas AU - Knoll, Christine AU - Ballhausen, Hanne AU - Thieffry, Axel AU - Chen, Yanbing AU - O'Donnell, Shane AU - Raile, Klemens AU - Cleal, Bryan PY - 2022 DA - 2022/7/14 TI - Emotional and Physical Health Impact in Children and Adolescents and Their Caregivers Using Open-source Automated Insulin Delivery: Qualitative Analysis of Lived Experiences JO - J Med Internet Res SP - e37120 VL - 24 IS - 7 KW - automated insulin delivery KW - closed-loop KW - do-it-yourself KW - open source KW - peer support KW - patient-reported outcomes KW - lived experiences KW - qualitative analysis KW - mobile phone AB - Background: Given the limitations in the access and license status of commercially developed automated insulin delivery (AID) systems, open-source AID systems are becoming increasingly popular among people with diabetes, including children and adolescents. Objective: This study aimed to investigate the lived experiences and 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 in the existing literature. Methods: Data were collected through 2 sets of open-ended questions from a web-based multinational survey of 60 families from 16 countries. The narratives were thematically analyzed, and a coding framework was identified through iterative alignment. Results: A range of emotions and improvements in quality of life and physical health were reported, as open-source AID enabled families to shift their focus away from diabetes therapy. Caregivers were less worried about hypoglycemia at night and outside their family homes, leading to increased autonomy for the child. Simultaneously, the glycemic outcomes and sleep quality of both the children and caregivers improved. Nonetheless, the acquisition of suitable hardware and technical setup could be challenging. The #WeAreNotWaiting community was the primary source of practical and emotional support. Conclusions: Our findings show the benefits and transformative impact of open-source AID and peer support on children with diabetes and their caregivers and families, where commercial AID systems are not available or suitable. Further efforts are required to improve the effectiveness and usability and facilitate access for children with diabetes, worldwide, to benefit from this innovative treatment. International Registered Report Identifier (IRRID): RR2-10.2196/15368 SN - 1438-8871 UR - https://www.jmir.org/2022/7/e37120 UR - https://doi.org/10.2196/37120 UR - http://www.ncbi.nlm.nih.gov/pubmed/35834298 DO - 10.2196/37120 ID - info:doi/10.2196/37120 ER -