"I Choose to Live, for Life Itself": Understanding Agency of Home-Based Care Patients Through Information Practices and Relational Dynamics in Care Networks

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.

💡 Research Summary

This paper investigates how patient agency is enacted, expressed, and represented within home‑based care (HBC) networks, and why a persistent “representation gap” limits patients’ voices in shared care planning. The authors conducted a field study in Seoul, South Korea, involving 23 semi‑structured interviews with three stakeholder groups—patients receiving HBC, healthcare professionals (physicians, nurses, nurse assistants), and professional care workers (social workers, personal care aides)—and 60 hours of ethnographic observation across three hospitals and seven care agencies. Participants were required to have at least three months of experience with HBC to ensure familiarity with routine practices. Informal caregivers such as family members were deliberately excluded to focus on professional interactions.

The findings are organized around two central themes. First, patient agency in HBC is not a static, individual attribute but a relational capacity that emerges through three interlocking processes: (1) maintaining everyday continuity, whereby patients preserve their identity by sustaining personal routines and habits; (2) receiving mutual recognition from care providers, meaning that when clinicians and aides acknowledge and validate patients’ small choices or preferences, patients feel their contributions are valued and are more likely to participate actively; and (3) engaging with the material home environment, as the physical layout, objects (e.g., medication cabinets), and emerging smart‑home technologies shape what actions are possible and therefore influence agency. Together, these mechanisms allow patients to exercise “agency within dependence,” negotiating autonomy while relying on professional support.

The second theme introduces the analytic construct of the “representation gap.” The authors identify three systemic mechanisms that filter or fragment patient expressions: (a) Structured documentation systems such as electronic medical records (EMRs) prioritize standardized clinical data and exclude contextual, narrative, or affective information, effectively silencing lived‑experience knowledge; (b) Informal communication channels (brief verbal exchanges during visits, ad‑hoc messaging) remain undocumented, so they do not feed into formal decision‑making processes, leading to a fragmentation of patient voice across the network; and (c) Doctor‑centered hierarchies embed a power asymmetry that positions patients as passive recipients, reinforcing a top‑down flow of information where clinicians retain ultimate authority over care plans. These mechanisms collectively produce a gap between what patients actually want or do and what is visible to the broader care coordination apparatus.

Building on these insights, the paper proposes three design considerations aimed at bridging the representation gap. First, a “story‑based documentation tool” that captures patients’ daily narratives and links them to structured EMR fields, ensuring that contextual knowledge is preserved and searchable. Second, a “shared decision‑making interface” that visualizes contributions from all stakeholders—including patients—in real time, making patient preferences explicit and enabling transparent negotiation of care plans. Third, a “physical‑digital integration layer” that leverages smart‑home sensors and environmental data to automatically infer patients’ routines and constraints, feeding this information back into care coordination platforms so that the material context is accounted for in planning.

The authors argue that these interventions would re‑position patients as active co‑designers of their care, rather than passive data sources, and would align HBC’s sociotechnical infrastructure with a relational ethics of care. The study contributes to HCI/CSCW literature in two ways: (1) it reframes patient agency in HBC as a relational, context‑dependent capacity rather than an individualistic decision‑making trait, offering a theoretical lens that integrates care ethics, and (2) it empirically demonstrates how documentation practices, communication flows, and organizational hierarchies systematically marginalize patient input, providing concrete evidence for designers and policymakers seeking to create more inclusive, agency‑supportive home‑care technologies.