Te Huataki Waiora School of Health, Sport and Human Performance, University of Waikato, Hamilton, New Zealand.
J Diabetes Sci Technol. 2020 Nov;14(6):1022-1027. doi: 10.1177/1932296819883876. Epub 2019 Oct 24.
The do-it-yourself (DIY) artificial pancreas system (APS) community is led by people with diabetes (PWD) and their families. In contrast to standard models of care, in which health care professionals are responsible for the education and training of PWD and their families, within the DIY APS, community users are reliant on their peers for education and training. The provision of this support has not previously been studied. This article focuses on the role of mentors within the DIY APS community.
Semistructured interviews were conducted with mentors ( = 9) who were identified with assistance from the DIY APS community. Thematic analysis was undertaken. Results were presented to select participants who endorsed the results as an accurate description of mentoring in the DIY APS community.
Mentors' primary motivation was altruism. An empathetic, process-focused approach was modeled by prominent mentors. The use of online forums as the primary source of user support was perceived to be an effective method for sharing the workload. Key challenges for mentors included the frequency with which users asked questions that were answered in the existing documentation, dealing with conflict and managing workload. Most participants did not perceive mentoring to be risky, but did take steps to ensure that users were taking responsibility for their own systems.
This study is the first to examine the role of mentors within the DIY APS community and also within the broader diabetes online community. Future research might seek to quantify the empathetic, process-focused approach to mentoring.
DIY 人工胰腺系统 (APS) 社区由糖尿病患者 (PWD) 及其家属领导。与专业医护人员负责 PWD 及其家属的教育和培训的标准护理模式相比,在 DIY APS 中,社区用户依赖于同行提供教育和培训。以前没有研究过这种支持的提供方式。本文重点介绍 DIY APS 社区中导师的作用。
通过 DIY APS 社区的协助,确定了 9 名导师进行半结构化访谈。采用主题分析。结果呈现给了部分参与者,他们认可了这些结果,认为这准确描述了 DIY APS 社区中的导师工作。
导师的主要动机是利他主义。有影响力的导师树立了富有同理心、注重过程的方法。将在线论坛作为用户支持的主要来源被认为是一种有效分担工作的方法。导师面临的主要挑战包括用户频繁提出已经在现有文档中回答过的问题、处理冲突和管理工作量。大多数参与者认为导师工作没有风险,但确实采取了措施确保用户对自己的系统负责。
本研究首次探讨了 DIY APS 社区以及更广泛的糖尿病在线社区中导师的作用。未来的研究可能会尝试量化富有同理心、注重过程的导师方法。