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

Sung-In Kim, Joonyoung Park, Bogoan Kim, Hwajung Hong

TL;DR

This study reframes patient agency in home-based care as a relational, distributed capacity co-constructed through daily routines, mutual recognition, and engagement with the home environment. Through 23 multi-stakeholder interviews and 60 hours of ethnography in Seoul, it identifies a representation gap: current information practices (structured documentation, informal channels, and doctor-centered hierarchies) mask patient inputs from shared care planning. It argues that artifacts and infrastructures selectively privilege biomedical data, thereby marginalizing contextual, life-world knowledge. The authors propose design considerations—embedding patient values, feedback loops, boundary-object construction from home context, reciprocal collaboration, and accountable attribution—to bridge the gap and enhance patient-centered coordination in HBC.

Abstract

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.

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

TL;DR

This study reframes patient agency in home-based care as a relational, distributed capacity co-constructed through daily routines, mutual recognition, and engagement with the home environment. Through 23 multi-stakeholder interviews and 60 hours of ethnography in Seoul, it identifies a representation gap: current information practices (structured documentation, informal channels, and doctor-centered hierarchies) mask patient inputs from shared care planning. It argues that artifacts and infrastructures selectively privilege biomedical data, thereby marginalizing contextual, life-world knowledge. The authors propose design considerations—embedding patient values, feedback loops, boundary-object construction from home context, reciprocal collaboration, and accountable attribution—to bridge the gap and enhance patient-centered coordination in HBC.

Abstract

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.
Paper Structure (36 sections, 2 figures, 1 table)

This paper contains 36 sections, 2 figures, 1 table.

Table of Contents

  1. Introduction
  2. Related Work
  3. Patient Agency within the HBC Contexts
  4. Information Practices and Artifacts Shaping Patient Agency
  5. Methods
  6. Participant
  7. Data Collection
  8. Interview study
  9. Ethnographic Observation
  10. Data Analysis
  11. Ethical Considerations
  12. Findings
  13. Patient Agency and Its Recognition in HBC Networks
  14. Maintaining Continuity in Everyday Life
  15. Fostering Self-Efficacy Through Micro Achievements
  16. ...and 21 more sections

Figures (2)

  • Figure 1: HBC visit captured during our ethnographic observations with HP5 (right, seated).
  • Figure 2: A weekly care report captured during our observations with the care agency where CW1 works. The top panel depicts the original handwritten record in Korean, with overlays that label the core schema. The bottom panel presents our English translation of the entry from February 14th.