Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Feb 7, 2022
Open Peer Review Period: Feb 7, 2022 - Apr 4, 2022
Date Accepted: May 29, 2022
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
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.
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.
Citation
Request queued. Please wait while the file is being generated. It may take some time.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.