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

2026-01-30

AI Summary

This study addresses the frequent marginalization of patient agency in home-based care and its inadequate integration into shared care planning. Challenging the conventional view of agency as a static individual trait, the work reconceptualizes it as a relational capacity. Through 23 multi-stakeholder interviews and 60 hours of ethnographic observation, informed by theories of information practices and relational dynamics, the research reveals how institutionalized documentation practices, fragmented informal communication, and physician-centered hierarchical structures systematically suppress patient agency. The analysis identifies three interrelated structural barriers and proposes design-oriented intervention strategies to better support the meaningful incorporation of patient agency into collaborative care decision-making.

Technology Category

• Multiagent Systems: Mechanism Design
• Humans and AI: Planning and Decision Support for Human-Machine Teams
• Application Domains: Humanities & Computational Social Science

Application Category

• Responsible Web: Machine-in-the-loop, human agency and autonomy
• Social Networks and Social Media: Media and governance, opinion dynamics, filter bubbles, polarization
• Economics, Online Markets and Human Computation: The sharing economy

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.

Problem

• patient agency
• home-based care
• care planning
• representation gap
• relational dynamics

Innovation

• patient agency
• home-based care
• relational dynamics
• information practices
• care networks