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

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 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.

Caregiver Expectations of Interfacing With Voice Assistants to Support Complex Home Care: Mixed Methods Study

“…Previous research on complex home care has formatively identified some of the high-level health information management and communication processes of caregivers in the context of children with special health care needs [26]. With these previous findings and the outcomes of this study on caregivers' initial beliefs about the design functionalities that VAs could provide in complex home care, we can begin to map the design of VA technology to the home care work domain.…”

“…This research is part of a larger study to identify caregivers' perspectives on information management and communication in complex home care and the design and use of VAs to support caregivers of children with special health care needs and older adults [26]. Taking a pragmatic stance, the researchers specifically recognized that a constructivist approach to the truth must acknowledge the continuum of experiences and perspectives related to experiences, illuminating the drivers of behavior [37,38].…”

“…Nursing agencies currently use mobile apps to share care updates among their teams. However, these apps are often limited to the nursing team without including the family caregiver, who ultimately develops their own information management and communication methods in the home [26]. For family caregivers supporting older adults with dementia, the design of mobile apps to meet their information and communication needs has been shown to improve caregiving confidence, depression and self-efficacy, and interaction between caregivers and health care professionals [27][28][29].…”

“…Information is dynamically flowing among caregivers within these subdomains of the work environment. However, the information structure in paper-based systems or mobile apps can make accessing it challenging [26]. One of the primary benefits that VAs provide compared with graphical or other physical user interfaces is the removal of visual hierarchies by accessing information through voice commands [13,34].…”

Technology Acceptance of a Mobile Application to Support Family Caregivers in a Long-Term Care Facility

“…18 Mobile technologies can minimize the risk of exposure to COVID-19 and serve as alternative ways to communicate with the care recipient and LTC staff. 101,102 Family caregivers observe the advantages of technologies to support their roles, 99,[103][104][105][106] such as reducing caregiver stress by providing information, 99 supporting the mental and physical health of care recipients, and reducing and promoting interaction with LTC staff. 107 The demand for effective technologies to support caregivers will become more prominent.…”