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

这项研究将探讨社会技术如何支持和增强家庭护理人员在住院期间有效沟通和协调的能力，并制定社会技术原则，为健康危机期间家庭恢复力的下一代康复协调技术的设计提供信息。在这样的危机中，家庭必须调整和适应，承担新的角色，在协调照顾和相互支持的同时保持联系。一个主要的保护因素是家庭的复原力，即承受破坏性生活挑战并从中恢复过来的能力，这种能力正在变得更加强大和更加足智多谋。系统，使计算机支持的合作工作有希望支持和增强家庭的复原力，但它们的设计使用的假设，可能不适用于家庭健康危机的情况下。这些技术具有巨大的潜力，可以帮助团队在短时间内形成，建立支持性角色和协调程序，在信息工作中相互支持而不忽视情感健康，并随着条件和需求的变化而调整他们的协作实践。通过严格的定性调查，家庭驱动的设计和医院为基础的技术部署相结合，本研究将解决三个具体目标：（1）建模的需求和家庭弹性技术的设计机会;（2）合作设计和原型的下一代家庭协调技术，增强家庭协调护理的能力;以及（3）为重病儿童的家庭开发、部署和评估一套康复协调工具，这些工具体现了家庭弹性原则，帮助家庭成员科普不断变化的需求，并实现各种支持实践。这项工作将以儿童癌症为基础，这是青年人与疾病有关的死亡的主要原因，但也对不同背景下的家庭生活产生重大影响。 该研究将涉及研究生参与一个新兴的和有前途的新的研究领域，并将支持医学和计算社区之间的跨学科合作。该奖项反映了NSF的法定使命，并已被认为是值得通过使用基金会的智力价值和更广泛的影响审查标准进行评估的支持。

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.