Career: Family Resilience Technologies: Augmenting Caregiving Coordination Systems for Health Crisis Response

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This research will explore how social technologies can support and augment the ability of family caregivers to effectively communicate and coordinate during hospitalization, and develop sociotechnical principles that inform the design of next-generation caregiving coordination technologies for family resilience during a health crisis. During such a crisis, families must adjust and adapt, taking on new roles and staying connected while they coordinate care and support each other. A major protective factor is the family’s resilience, or ability to withstand and rebound from disruptive life challenges, emerging strengthened and more resourceful. Systems that enable computer-supported cooperative work hold promise to support and augment family resilience, but they are designed using assumptions that may not hold true in the case of family health crisis. These technologies have great potential to help groups form on short notice, establish supportive roles and coordination routines, support each other in information work without neglecting emotional wellbeing, and adapt their collaboration practices as conditions and needs change over time. Through a combination of rigorous qualitative investigations, family-driven design, and hospital-based technology deployments, this research will address three specific aims: (1) Modeling needs and design opportunities for family resilience technologies; (2) Collaboratively designing and prototyping next-generation caregiving coordination technologies that augment the ability of families to coordinate care; and (3) Developing, deploying, and evaluating a suite of caregiving coordination tools for families of seriously ill children that embodies family resilience principles, helps family members cope with evolving needs, and enables a variety of support practices. This work will be grounded in the case of pediatric cancer, the leading cause of disease-related deaths in youth, but also has significant implications for family caregiving in diverse contexts. The research will involve the participation of graduate students in an emerging and promising new area of research, and will support interdisciplinary collaboration between the medical and computing communities.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.