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.

Background Providing care in home environments is complex, and often the pressure is on caregivers to document information and ensure care continuity. Digital information management and communication technologies may support care coordination among caregivers. However, they have yet to be adopted in this context, partly because of issues with supporting long-term disease progression and caregiver anxiety. Voice assistant (VA) technology is a promising method for interfacing with digital health information that may aid in multiple aspects of being a caregiver, thereby influencing adoption. Understanding the expectations for VAs to support caregivers is fundamental to inform the practical development of this technology. Objective This study explored caregivers’ perspectives on using VA technology to support caregiving and inform the design of future digital technologies in complex home care. Methods This study was part of a larger study of caregivers across North America on the design of digital health technologies to support health communication and information management in complex home care. Caregivers included parents, guardians, and hired caregivers such as personal support workers and home care nurses. Video interviews were conducted with caregivers to capture their mental models on the potential application of VAs in complex home care and were theoretically analyzed using the technology acceptance model. Interviews were followed up with Likert-scale questions exploring perspectives on other VA applications beyond participants’ initial perceptions. Results Data were collected from 22 caregivers, and 3 themes were identified: caregivers’ perceived usefulness of VAs in supporting documentation, care coordination, and person-centered care; caregivers’ perceived ease of use in navigating information efficiently (they also had usability concerns with this interaction method); and caregivers’ concerns, excitement, expected costs, and previous experience with VAs that influenced their attitudes toward use. From the Likert-scale questions, most participants (21/22, 95%) agreed that VAs should support prompted information recording and retrieval, and all participants (22/22, 100%) agreed that they should provide reminders. They also agreed that VAs should support them in an emergency (18/22, 82%)—but only for calling emergency services—and guide caregivers through tasks (21/22, 95%). However, participants were less agreeable on VAs expressing a personality (14/22, 64%)—concerned they would manipulate caregivers’ perceptions—and listening ambiently to remind caregivers about their documentation (16/22, 73%). They were much less agreeable about VAs providing unprompted assistance on caregiving tasks (9/22, 41%). Conclusions The interviews and Likert-scale results point toward the potential for VAs to support family caregivers and hired caregivers by easing their information management and health communication at home. However, beyond information interaction, the potential impact of VA personality traits on caregivers’ perceptions of the care situation and the passive collection of audio data to improve user experience through context-specific interactions are critical design considerations that should be further examined.

BACKGROUND The diffusion of Voice Assistant (VA) technology in society is increasing due to its novelty, ease of use and fundamental utility. There is also an increase in demand for home care with caregivers providing healthcare services for children with special health care needs (CSHCN) and older adults choosing to age at home. Providing care in home environments is complex, and often the pressure is on caregivers to document information and ensure care continuity. Digital information management and communications technologies may support care coordination among caregivers. However, they have yet to be adopted in this context partly because of issues with supporting long-term disease progression and caregiver anxiety. VA technology is a promising method for interfacing with digital health information that may aid multiple aspects of being a caregiver, therefore influencing adoption. Understanding the expectations for VAs to support caregivers is fundamental to inform the practical development of this technology. OBJECTIVE This study explores caregivers’ perspectives on using VA technology to support caregiving and inform the design of future digital technologies in complex home care. METHODS This study is part of a larger study from caregivers across North America on the design of digital health technologies to support health communication and information management in complex home care. Caregivers included parents, guardians, and hired caregivers such as personal support workers and home care nurses. Video interviews were conducted with caregivers from their homes to capture their mental models on the potential application of VAs in complex home care. Interviews were followed-up with Likert-scale questions. The questions explored perspectives on other VA applications beyond participants’ initial perceptions. RESULTS Data were collected from 22 caregivers, and three themes were identified. First, caregivers Perceived Usefulness for VAs to support documentation, care coordination and person-centred care. Second, caregivers Perceived Ease of Use for navigating information. However, they also had voice interaction concerns. Third, caregivers’ Attitudes Towards Use were influenced by their overall concerns, excitement, and expected costs. From the Likert-scale questions, participants mostly agreed that VAs should support prompted information recording and retrieval. However, participants had mixed perspectives about VAs expressing a personality, teaching caregivers how to perform tasks, assisting in an emergency, and listening ambiently to provide unprompted assistance. CONCLUSIONS The interview and Likert-scale results point towards the potential for VAs to support family caregivers and hired caregivers by easing their information management and health communication in the home. However, beyond information interaction, the potential impact of VA personality traits on caregivers’ perceptions of the care situation and the passive collection of audio data to improve the user experience through context-specific interactions are critical design considerations that should be further examined.

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.