Department of Industrial and Systems Engineering and.
Department of Pediatrics, School of Medicine and Public Health, University of Wisconsin-Madison, Madison, Wisconsin.
Hosp Pediatr. 2022 Jul 1;12(7):663-673. doi: 10.1542/hpeds.2022-006532.
Assistance from medical devices is common for children with medical complexity (CMC) but introduces caregiving challenges. We tested the feasibility of "Tubes@HOME," a mobile application supporting CMC family-delivered care using enteral care as a model.
Caregivers of CMC with enteral tubes participated in a 30-day feasibility study of Tubes@HOME November 2020 through January 2021. Tubes@HOME was available on mobile devices and designed to support collaborative care and tracking over time. Key features include child profile, caregiving network management, care routines, feedback loop, and action plans. Care routines delineated nutrition, medication, and procedural tasks needed for the child: frequencies, completions, and reminders. Metadata summarized feature use among users. Feasibility was evaluated with postuse questionnaires and interviews. Measures of Tubes@HOME's usability and usefulness included the NASA Task Load Index (TLX), System Usability Scale (SUS), and Acceptability and Use of Technology Questionnaire (AUTQ).
Among n = 30 children, there were 30 primary (eg, parent) and n = 22 nonprimary caregivers using Tubes@HOME. Children had a median (IQR) 10 (5.5-13) care routines created. For care routines created, 93% were marked complete at least once during the study period, with participants engaging with routines throughout study weeks 2 to 4. Results (mean [SD]) indicated low mental workload (TLX) 30.9 (12.2), good usability (SUS) 75.4 (14.7), and above-average usefulness (AUTQ) 4.0 (0.7) associated with Tubes@HOME, respectively. Interviews contextualized usefulness and suggested improvements.
Longitudinal use of Tubes@HOME among caregiving networks appeared feasible. Efficacy testing is needed, and outcomes could include reliability of care delivered in home and community.
医疗器械辅助在患有复杂疾病的儿童（CMC）中很常见，但也带来了照护挑战。我们测试了“Tubes@HOME”（一种移动应用程序）的可行性，该应用程序以肠内营养为模型，支持 CMC 家庭护理。
2020 年 11 月至 2021 年 1 月，有肠内管的 CMC 患儿的照护者参与了 Tubes@HOME 的 30 天可行性研究。Tubes@HOME 可在移动设备上使用，旨在支持随时间推移的协作护理和跟踪。主要功能包括儿童档案、照护者网络管理、护理常规、反馈回路和行动计划。护理常规描述了儿童所需的营养、药物和程序任务：频率、完成情况和提醒。元数据总结了用户对功能的使用情况。通过使用后的问卷调查和访谈评估可行性。Tubes@HOME 的可用性和有用性的测量指标包括美国国家航空航天局任务负荷指数（TLX）、系统可用性量表（SUS）和技术接受度和使用情况问卷（AUTQ）。
在 n = 30 名儿童中，有 30 名主要（如父母）和 n = 22 名非主要照护者使用了 Tubes@HOME。儿童创建的护理常规中位数（IQR）为 10（5.5-13）个。对于创建的护理常规，在研究期间至少有 93%被标记为完成，参与者在研究的第 2 周到第 4 周期间一直使用常规。结果（平均值[标准差]）分别显示出低心理工作量（TLX）30.9（12.2）、良好的可用性（SUS）75.4（14.7）和高于平均水平的有用性（AUTQ）4.0（0.7），这与 Tubes@HOME 相关。访谈将有用性和改进建议置于上下文中。
在照护者网络中进行 Tubes@HOME 的纵向使用似乎是可行的。需要进行功效测试，结果可能包括家庭和社区中护理交付的可靠性。
