"You Cannot Offer Such a Suggestion": Designing for Family Caregiver Input in Home Care Systems

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Previous work has looked closely at the challenges of using patient-generated data to enable remote assessment and monitoring by healthcare professionals. In this paper, we examine family caregivers who act as proxies for patients who may not have the capacity of capturing the necessary data. We worked with occupational therapists to develop an application for remote assessment of the safety of patients' homes by occupational therapists with the assistance of family caregivers. We evaluated the application with family caregivers and found two features unique to communication between family caregivers and healthcare professionals: Caregivers want to be able to direct healthcare professionals' attention to support problem-solving at home, and they include their perspective on how to best meet the patient's health needs. We discuss the importance of these findings for home systems in the domain of long-term chronic care.