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)

Abstract

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 home. While family caregivers currently capture information through non-digital methods, digital healthcare applications are a promising solution to support standardizing 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 healthcare tools is low. With the rise in home care for children with complex health care needs, it is critically important to understand the caregiving work domain to inform the design of technologies that support child safety in the home. OBJECTIVE The objective of our study was to understand how family caregivers navigate information management and communication in complex home care for children with special health care needs. METHODS This research is part of a broader study about the perspectives of caregivers across North America on integrating and designing digital healthcare tools for complex home care. We conducted semi-structured interviews with family caregivers of children with special health care needs. Inductive thematic analysis was used to analyze the information management and communication processes. RESULTS We collected data from five Canadian and two American family caregivers and identified five themes. First, family caregivers were Continuously Learning to Provide Care. They were 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 Child’s Educators. Beyond the scope of managing their child’s health information, family caregivers were additionally Navigating Bureaucratic Processes for their child’s home care. CONCLUSIONS Family caregivers’ experiences caring for CSHCN differ geographically and evolve as their child’s condition changes and they grow towards adulthood. Family caregivers recorded information using paper-based tools, which did not sufficiently support information management. They also experienced significant pressures in summarizing information and coordinating two-way communication about the details of their child’s health with caregivers. The design of digital healthcare tools for complex home care may improve care coordination if they provide an intuitive method for information-interaction yet provide significant utility by delivering situation-specific insights and adapting to unique and dynamic homecare environments.