Exploring the Experiences of Family Caregivers of Children With Special Health Care Needs to Inform the Design of Digital Health Systems: Formative Qualitative Study (Preprint)

BACKGROUND Family caregivers of children with special health care needs (CSHCN) are responsible for managing and communicating information regarding their child’s health in their homes. Although family caregivers currently capture information through nondigital methods, digital health care applications are a promising solution for supporting the standardization of information management in complex home care across their child’s health care team. However, family caregivers continue to use paper-based methods where the adoption of digital health care tools is low. With the rise in home care for children with complex health care needs, it is important to understand the caregiving work domain to inform the design of technologies that support child safety in the home. OBJECTIVE The aim of this study is to explore how family caregivers navigate information management and communication in complex home care for CSHCN. METHODS This research is part of a broader study to explore caregivers’ perspectives on integrating and designing digital health care tools for complex home care. The broader study included interviews and surveys about designing a voice user interface to support home care. This formative study explored semistructured interview data with family caregivers of CSHCN about their home care situations. Inductive thematic analysis was used to analyze the information management and communication processes. RESULTS We collected data from 7 family caregivers in North America and identified 5 themes. First, family caregivers were continuously learning to provide care. They were also updating the caregiver team on their child’s status and teaching caregivers about their care situation. As caregiving teams grew, they found themselves working on communicating with their children’s educators. Beyond the scope of managing their child’s health information, family caregivers also navigated bureaucratic processes for their child’s home care. CONCLUSIONS Family caregivers’ experiences of caring for CSHCN differ contextually and evolve as their child’s condition changes and they grow toward adulthood. Family caregivers recorded information using paper-based tools, which did not sufficiently support information management. They also experienced significant pressure in summarizing information and coordinating 2-way communication about the details of their child’s health with caregivers. The design of digital health care systems and tools for complex home care may improve care coordination if they provide an intuitive method for information interaction and significant utility by delivering situation-specific insights and adapting to unique and dynamic home care environments. Although these findings provide a foundational understanding, there is an opportunity for further research to generalize the findings.

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