Huhndt Antonia, Chen Yanbing, O'Donnell Shane, Cooper Drew, Ballhausen Hanne, Gajewska Katarzyna A, Froment Timothée, Wäldchen Mandy, Lewis Dana M, Raile Klemens, Skinner Timothy C, Braune Katarina
Department of Paediatric Endocrinology and Diabetes, Charité-Universitätsmedizin Berlin, Berlin, Germany.
School of Public Health, Physiotherapy & Sports Science, University College Dublin, Belfield, Ireland.
Front Clin Diabetes Healthc. 2022 Jul 25;3:876511. doi: 10.3389/fcdhc.2022.876511. eCollection 2022.
As a treatment option for people living with diabetes, automated insulin delivery (AID) systems are becoming increasingly popular. The #WeAreNotWaiting community plays a crucial role in the provision and distribution of open-source AID technology. However, while a large percentage of children were early adopters of open-source AID, there are regional differences in adoption, which has prompted an investigation into the barriers perceived by caregivers of children with diabetes to creating open-source systems.
This is a retrospective, cross-sectional and multinational study conducted with caregivers of children and adolescents with diabetes, distributed across the online #WeAreNotWaiting online peer-support groups. Participants-specifically caregivers of children not using AID-responded to a web-based questionnaire concerning their perceived barriers to building and maintaining an open-source AID system.
56 caregivers of children with diabetes, who were not using open-source AID at the time of data collection responded to the questionnaire. Respondents indicated that their major perceived barriers to building an open-source AID system were their limited technical skills (50%), a lack of support by medical professionals (39%), and therefore the concern with not being able to maintain an AID system (43%). However, barriers relating to confidence in open-source technologies/unapproved products and fear of digital technology taking control of diabetes were not perceived as significant enough to prevent non-users from initiating the use of an open-source AID system.
The results of this study elucidate some of the perceived barriers to uptake of open-source AID experienced by caregivers of children with diabetes. Reducing these barriers may improve the uptake of open-source AID technology for children and adolescents with diabetes. With the continuous development and wider dissemination of educational resources and guidance-for both aspiring users and their healthcare professionals-the adoption of open-source AID systems could be improved.
作为糖尿病患者的一种治疗选择，自动胰岛素输送（AID）系统越来越受欢迎。“我们不等了”社区在开源AID技术的提供和分发中发挥着关键作用。然而，虽然很大比例的儿童是开源AID的早期采用者，但在采用情况上存在地区差异，这促使人们对糖尿病儿童的照顾者在创建开源系统时所感受到的障碍进行调查。
这是一项回顾性、横断面的跨国研究，研究对象是患有糖尿病的儿童和青少年的照顾者，他们分布在在线“我们不等了”同伴支持小组中。参与者——特别是未使用AID的儿童的照顾者——回答了一份关于他们在构建和维护开源AID系统时所感受到的障碍的网络问卷。
56名糖尿病儿童的照顾者在数据收集时未使用开源AID，他们回答了问卷。受访者表示，他们在构建开源AID系统时主要感受到的障碍是技术技能有限（50%）、缺乏医疗专业人员的支持（39%），因此担心无法维护AID系统（43%）。然而，与对开源技术/未经批准产品的信心以及担心数字技术控制糖尿病相关的障碍，并未被认为足以阻止非使用者开始使用开源AID系统。
本研究结果阐明了糖尿病儿童的照顾者在采用开源AID时所感受到的一些障碍。减少这些障碍可能会提高糖尿病儿童和青少年对开源AID技术的采用率。随着教育资源和指导——针对有抱负的使用者及其医疗保健专业人员——的不断发展和更广泛传播，开源AID系统的采用情况可能会得到改善。
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