CareMirror：将照护者福祉引入痴呆症照护生态系统
CareMirror: Bringing Caregiver Wellbeing into the Dementia Care Ecosystem
- University of Illinois Urbana-Champaign（伊利诺伊大学厄巴纳-香槟分校）
- OSF HealthCare（OSF医疗保健）
- Indiana University Indianapolis（印第安纳大学印第安纳波利斯分校）
- University of Massachusetts Amherst（马萨诸塞大学阿默斯特分校）
机构由 AI 辅助整理，请以论文原文为准。
AI总结：
本研究提出CareMirror生态系统，通过访谈14名照护者，探索支持其福祉的纵向反思与临床共享设计，强调AI辅助但不替代人类判断，为主动临床相连的照护者支持提供设计考量。
AI中文摘要：
痴呆症患者的家庭照护者承担着情感和实际责任，然而他们自身的福祉往往在痴呆症照护中处于边缘地位。我们构建了CareMirror，一个设想的照护者福祉生态系统，具有相互关联的面向照护者和临床医生的界面，用于纵向反思、个性化支持以及由照护者控制地与临床照护共享信息。我们与14名照护者进行了半结构化访谈，将CareMirror作为设计探针，以考察他们如何看待这一生态系统，以及围绕临床联系出现了哪些期望、担忧和界限。照护者重视对其福祉的关注、纵向意识、情境敏感的支持，以及当临床可见性能够带来有意义的后续跟进时的价值。然而，重复反思可能成为负担或情感上困难，自动化的临床共享可能抑制坦诚披露，参与者希望控制哪些信息进入临床照护。他们还期望AI支持反思和沟通，但不取代照护者的声音或临床医生的判断。我们为主动的、与临床相连的照护者福祉支持提供了设计考量。
英文摘要：
Family caregivers of people living with dementia shoulder emotional and practical responsibilities, yet their own wellbeing often remains peripheral to dementia care. We built CareMirror, an envisioned caregiver wellbeing ecosystem with interconnected caregiver- and clinician-facing interfaces for longitudinal reflection, personalized support, and caregiver-controlled sharing with clinical care. We conducted semi-structured interviews with 14 caregivers, using CareMirror as a design probe to examine how they perceived this ecosystem and what expectations, concerns, and boundaries emerged around clinical connection. Caregivers valued attention to their wellbeing, longitudinal awareness, context-sensitive support, and clinical visibility when it could lead to meaningful follow-up. However, repeated reflection could become burdensome or emotionally difficult, automatic clinical sharing could inhibit candid disclosure, and participants wanted control over what information entered clinical care. They also expected AI to support reflection and communication without replacing caregiver voice or clinician judgment. We contribute design considerations for proactive, clinically connected caregiver wellbeing support.
