Home-based care (HBC) delivers medical and care services in patients' living environments, offering unique opportunities for patient-centered care. However, patient agency is often inadequately represented in shared HBC planning processes. Through 23 multi-stakeholder interviews with HBC patients, healthcare professionals, and care workers, alongside 60 hours of ethnographic observations, we examined how patient agency manifests in HBC and why this representation gap occurs. Our findings reveal that patient agency is not a static individual attribute but a relational capacity shaped through maintaining everyday continuity, mutual recognition from care providers, and engagement with material home environments. Furthermore, we identified that structured documentation systems filter out contextual knowledge, informal communication channels fragment patient voices, and doctor-centered hierarchies position patients as passive recipients. Drawing on these insights, we propose design considerations to bridge this representation gap and to integrate patient agency into shared HBC plans.

翻译：居家照护（HBC）在患者的生活环境中提供医疗与照护服务，为实现以患者为中心的照护提供了独特机遇。然而，在共享的HBC规划过程中，患者的能动性往往未能得到充分体现。通过对HBC患者、医疗专业人员及照护工作者进行的23次多利益相关方访谈，以及60小时的人种志观察，我们探究了患者能动性在HBC中如何显现，以及为何存在这种表征差距。研究发现，患者能动性并非静态的个人属性，而是一种通过维持日常连续性、获得照护提供者的相互认可以及与物质性家居环境互动所形塑的关系性能力。此外，我们发现结构化的文档系统过滤了情境性知识，非正式沟通渠道碎片化了患者的声音，而以医生为中心的层级结构则将患者定位为被动接受者。基于这些发现，我们提出了弥合这一表征差距并将患者能动性整合到共享HBC计划中的设计考量。