“关于这一点唯一确定的是不确定性”：探索轻度认知障碍老年人的非正式照护协调实践
"The Only Thing Certain About This is Uncertainty": Exploring Informal Care Coordination Practices Among Older Adults with Mild Cognitive Impairment
- Georgia Institute of Technology（佐治亚理工学院）
- Northeastern University（东北大学）
机构由 AI 辅助整理，请以论文原文为准。
AI总结：
本研究通过访谈分析，揭示轻度认知障碍老年人非正式照护协调的复杂性，强调其作为关系性过程，并指出需设计支持自主性、适应性和协作的照护系统。
AI中文摘要：
居家养老的老年人通常拥有非正式支持系统，以帮助他们维持独立性和生活质量。随着年龄增长，许多老年人面临轻度认知障碍（MCI）的出现，这带来了一系列新的功能和认知变化，影响他们管理日常生活的能力。为MCI老年人安排和协调日常活动支持的方式因非正式照护网络而异，但通常涉及一个主要照护伙伴以及由家人、朋友和其他人组成的网络。在本文中，我们对MCI老年人和他们的主要照护伙伴进行了深度访谈，并进行了主题分析，以全面了解他们的日常实际生活体验。我们的分析采用了一个多维视角，包括人员（“谁”）、活动（“什么”）和工具（“如何”），以揭示MCI中非正式照护协调的本质。我们的结果将MCI的非正式照护描述为主要照护伙伴执行的一系列复杂编排任务，这些任务支持被诊断个体的实际、认知和情感需求，并协调更广泛照护网络的参与。我们发现，协调不仅仅是后勤组织的问题，还是一个深度关系性的过程，受到与技术工具的协商和不断演变的角色的塑造。通过这项工作，我们将MCI的照护协调重新定义为一个独特且未被充分探索的设计空间，这个空间需要能够支撑自主性、适应不断变化的能力、响应社会情感需求并促进协作照护的系统。
英文摘要：
Older adults aging in place often have informal support systems to help them maintain independence and quality of life. As they age, many older adults deal with the onset of Mild Cognitive Impairment (MCI), which introduces a new set of functional and cognitive changes that affect their ability to manage daily routines. The approach to arranging and coordinating support for everyday activities for older adults with MCI varies across informal care networks, but typically involves a primary care partner and a network of family, friends and others. In this paper, we present a thematic analysis of in-depth interviews with older adults with MCI and their primary care partners to gain a holistic picture of their day-to-day lived experience. Our analysis uses a multi-dimensional lens of people ("who"), activities ("what"), and tools ("how") to reveal insights about the nature of informal care coordination in MCI. Our results characterize informal care for MCI as a set of complex orchestration tasks by a primary care partner that support the practical, cognitive and emotional needs of the diagnosed individual and mediate the involvement of the broader care network. We uncover that coordination is not solely a matter of logistical organization, but also a deeply relational process shaped by negotiation with technological tools and evolving roles. Through this work, we reframe care coordination for MCI as a distinct and underexplored design space, one that demands systems capable of scaffolding autonomy, adapting to shifting capacities, responding to socio-emotional needs, and fostering collaborative caregiving.
