CAREER: Digital Hospice: Human-Centered Design for Personal Accounts and Data at the End of Life

职业：数字临终关怀：以人为本的临终个人账户和数据设计

• 批准号: 2048244
• 负责人: Jed Brubaker
• 金额: $ 55万
• 依托单位: University of Colorado at Boulder
• 依托单位国家: 美国
• 项目类别: Continuing Grant
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-08-01 至 2026-07-31
• 项目状态: 未结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=2048244&HistoricalAwards=false
• 关键词: CAREER; Digital; Hospice; Human; Centered

This research will holistically study the post-mortem needs of online accounts and data; develop end-of-life planning practices, guidelines, and systems; and develop a framework describing the relationships between pre-mortem planning and post-mortem experiences in technology design. Designers of social media and other online information services have little guidance on how to create systems that consider their users' inevitable deaths. Likewise, users have little guidance surrounding technology when it comes to end-of-life planning. Drawing from the principles of hospice care, this project aims to support end-of-life planning for online accounts and data and the design of systems that support post-mortem data management. This project will produce outcomes to ensure this vision, including: (1) designing a transformative framework for end-of-life planning that can be adopted by the public; (2) developing design guidelines that will aid technologists with the nuanced considerations that mortality presents; (3) launching and running a digital end-of-life clinic to help educate the public about end-of-life planning for technology; and (4) engaging students through research and curricular activities focused on human-centered approaches to studying and designing technology related to the end-of-life and post-mortem data.This project will engage in longitudinal qualitative and design research with terminally ill patients and a student run digital end-of-life clinic serving the public to: (1) empirically identify challenges that death presents for users and designers; (2) develop and validate strategies for end-of-life planning related to online accounts and data that honor human dignity while addressing the challenges and constraints of technology design; and (3) connect research and education through curricular content that broadens students' understanding of what counts as "human" in human-centered computing. Additionally, this research will focus on collaboration, identifying the specific properties of coordination that end-of-life planning involves - for example, delegation between stakeholders (some of which may not be known pre-mortem), interaction across long periods of time, and the inability to continue coordination post-mortem when plans go into effect. Together, this work will lead to theoretical insights that extend the state-of-the-art in human-centered design by developing frameworks for end-of-life design that address interdependencies between pre- and post-mortem interactions, as well as identifying fundamental limits to user-centeredness and developing frameworks for designing systems in a user's absence.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.

这项研究将全面研究在线账户和数据的事后需求;制定生命周期结束时的规划实践，指导方针和系统;并制定一个框架，描述技术设计中的事前规划和事后经验之间的关系。社交媒体和其他在线信息服务的设计师们对于如何创建考虑用户不可避免的死亡的系统几乎没有指导。同样，在涉及到寿命终止规划时，用户几乎没有关于技术的指导。该项目借鉴临终关怀的原则，旨在支持在线账户和数据的临终规划，以及支持死后数据管理的系统设计。该项目将产生确保实现这一愿景的成果，包括：（1）设计一个可供公众采用的临终规划变革框架;（2）制定设计准则，帮助技术人员考虑死亡率所带来的细微差别;（3）启动和运行一个数字临终诊所，帮助教育公众关于技术的临终规划;以及（4）通过研究和课程活动吸引学生参与，重点关注以人为本的方法来研究和设计与临终和死后数据相关的技术。本项目将参与对绝症患者和学生运营的数字临终诊所的纵向定性和设计研究，为公众服务：（1）经验性地识别死亡给用户和设计师带来的挑战;（2）制定和验证与在线账户和数据相关的临终规划策略，荣誉人的尊严，同时解决技术设计的挑战和限制;（3）通过课程内容将研究和教育联系起来，拓宽学生对以人为本计算中“人”的理解。 此外，本研究将侧重于协作，确定临终规划涉及的协调的具体属性-例如，利益相关者之间的授权（其中一些可能在死前不知道），长时间的互动，以及计划生效后无法继续协调。总之，这项工作将导致理论的见解，扩展了最先进的以人为本的设计，通过开发框架，为结束生命的设计，解决之间的相互依存关系前和死后的相互作用，以及确定用户的基本限制-该奖项反映了NSF的法定使命，并被认为是值得支持的，使用基金会的知识价值和更广泛的影响审查标准进行评估。

项目成果

Researcher Wellbeing and Best Practices in Emotionally Demanding Research

研究人员的健康和情感要求高的研究的最佳实践

• DOI: 10.1145/3491101.3503742
• 发表时间: 2022
• 期刊: Extended Abstracts of the 2022 CHI Conference on Human Factors in Computing Systems
• 作者: Feuston, Jessica L.;Bhattacharya, Arpita;Andalibi, Nazanin;Ankrah, Elizabeth A.;Erete, Sheena;Handel, Mark;Moncur, Wendy;Vieweg, Sarah;Brubaker, Jed R.
• 通讯作者: Brubaker, Jed R.