"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 explores how patient agency in home-based care is relationally constructed and often underrepresented, highlighting the influence of communication, documentation, and hierarchies, and proposing design solutions to enhance patient voice.

Contribution

It provides a nuanced understanding of patient agency as relational and identifies systemic barriers in documentation and communication that hinder patient representation in care planning.

Findings

Patient agency is relational, shaped by everyday continuity and mutual recognition.

Structured documentation and hierarchies filter out patient contextual knowledge.

Informal communication channels are crucial for capturing patient voices.

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.