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Isolation in Coordination: Challenges of Caregivers in the USA

Mark Schlager
Laura Pina
Lauren Wilcox
Proceedings of the ACM CHI 2021 Conference on Human Factors in Computing Systems, ACM (2021)


As the global population ages and the prevalence of chronic conditions and acute infections rise, it is becoming imperative to understand the many forms of caregiving labor and create sociotechnical systems that support them. In this paper, we report results of a large survey study with 2000 informal caregivers in the USA, highlighting the fundamental challenges that different types of caregivers face when coordinating care with others. Our findings support previous findings on caregivers' coordination challenges, while also offering insights into the situational, mediating factors that influence the extent to which care coordination challenges are felt. These mediating factors include caregivers' relationships, access to a variety of resources including physical, social, and financial support, and physical and mental barriers. We discuss these challenges and mediating factors, and conclude with a discussion on how they can be considered in the design of future sociotechnical systems.