Designing for caregiving networks: a case study of primary caregivers of children with medical complexity.

OBJECTIVE: The study aimed to characterize the experiences of primary caregivers of children with medical complexity (CMC) in engaging with other members of the child's caregiving network, thereby informing the design of health information technology (IT) for the caregiving network. Caregiving networks include friends, family, community members, and other trusted individuals who provide resources, information, health, or childcare. MATERIALS AND METHODS: We performed a secondary analysis of two qualitative studies. Primary studies conducted semi-structured interviews (n = 50) with family caregivers of CMC. Interviews were held in the Midwest (n = 30) and the mid-Atlantic region (n = 20). Interviews were transcribed verbatim for thematic analysis. Emergent themes were mapped to implications for the design of future health IT. RESULTS: Thematic analysis identified 8 themes characterizing a wide range of primary caregivers' experiences in constructing, managing, and ensuring high-quality care delivery across the caregiving network. DISCUSSION: Findings evidence a critical need to create flexible and customizable tools designed to support hiring/training processes, coordinating daily care across the caregiving network, communicating changing needs and care updates across the caregiving network, and creating contingency plans for instances where caregivers are unavailable to provide care to the CMC. Informaticists should additionally design accessible platforms that allow primary caregivers to connect with and learn from other caregivers while minimizing exposure to sensitive or emotional content as indicated by the user. CONCLUSION: This article contributes to the design of health IT for CMC caregiving networks by uncovering previously underrecognized needs and experiences of CMC primary caregivers and drawing direct connections to design implications.

Feasibility Testing of Tubes@HOME: A Mobile Application to Support Family-Delivered Enteral Care.

BACKGROUND: 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. METHODS: 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). RESULTS: 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. CONCLUSIONS: 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.

Codesign and Usability Testing of a Mobile Application to Support Family-Delivered Enteral Tube Care.

BACKGROUND: Enteral tubes are prevalent among children with medical complexity (CMC), and complications can lead to costly health care use. Our objective was to design and test the usability of a mobile application (app) to support family-delivered enteral tube care. METHODS: Human-centered design methods (affinity diagramming, persona development, and software development) were applied with family caregivers of CMC to develop a prototype. During 3 waves of usability testing with design refinement between waves, screen capture software collected user-app interactions and inductive content analysis of narrative feedback identified areas for design improvement. The National Aeronautics and Space Administration Task Load Index and the System Usability Scale quantified mental workload and ease of use. RESULTS: Design participants identified core app functions, including displaying care routines, reminders, tracking inventory and health data, caregiver communication, and troubleshooting. Usability testing participants were 80% non-Hispanic white, 28% lived in rural settings, and 20% had not completed high school. Median years providing enteral care was 2 (range 1-14). Design iterations improved app function, simplification, and user experience. The mean System Usability Scale score was 76, indicating above-average usability. National Aeronautics and Space Administration Task Load Index revealed low mental demand, frustration, and effort. All 14 participants reported that they would recommend the app, and that the app would help with organization, communication, and caregiver transitions. CONCLUSIONS: Using a human-centered codesign process, we created a highly usable mobile application to support enteral tube caregiving at home. Future work involves evaluating the feasibility of longitudinal use and effectiveness in improving self-efficacy and reduce device complications.