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

Paper Title

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

Publication Info

• Topic area: Patient agency in home-based care (HBC) and its integration into care networks.
• Keywords: Home-based care, patient agency, care networks, relational dynamics, information practices, care ethics, documentation systems, HCI, sociotechnical systems, healthcare coordination.

Background and Problem

• Problem / challenge: Patient agency in HBC is inadequately represented in shared care planning due to rigid documentation systems, fragmented communication channels, and hierarchical decision-making that prioritize biomedical metrics over contextual knowledge.
• Significance: Addressing this gap is crucial for realizing patient-centered care (PCC) in HBC, where patients’ identities, values, and preferences are central to care delivery.
• Motivation and related work: Prior research in HCI and healthcare coordination has explored sociotechnical systems and relational care ethics but has not fully examined how HBC’s unique dynamics—where professional protocols intersect with patients’ home environments—impact the visibility and integration of patient agency.

Solution

• Proposed approach: A relational framework for understanding and integrating patient agency into HBC through design considerations that address infrastructural and relational barriers.
• Novelty:
  1. Articulates a relational account of patient agency specific to HBC, emphasizing its co-construction through daily continuity, mutual recognition, and material environments.
  2. Introduces the concept of the "representation gap" to explain how current information practices and relational dynamics obscure patient agency.
  3. Proposes design considerations to integrate patient agency into shared care plans, including context-aware technologies and democratized information infrastructures.
• Procedure and key techniques:
  • Conducted 23 multi-stakeholder interviews with HBC patients, healthcare professionals, and care workers.
  • Performed 60 hours of ethnographic observation in HBC settings.
  • Analyzed data using grounded theory to identify themes related to patient agency and its representation in care networks.

Results

• Concrete findings:
  • Patient agency in HBC manifests as maintaining everyday continuity, achieving micro-functional goals, and deepening care relationships through contextual understanding.
  • Systematic barriers include structured documentation systems that filter out contextual knowledge, informal communication channels that fragment patient voices, and doctor-centered hierarchies that marginalize patient preferences.
• Advantage over baselines:
  • Highlights the relational and contextual dimensions of patient agency, which are often overlooked in traditional biomedical and individualistic frameworks.
  • Proposes actionable design considerations to address the representation gap, moving beyond existing HCI solutions that focus on institutional care settings.
• Experiments / evaluation:
  • Field study with 23 participants (8 patients, 7 healthcare professionals, 8 care workers) in Seoul, South Korea.
  • Data collection included semi-structured interviews, ethnographic observations, and analysis of 39 patient-related documents.
  • Evaluated how patient agency is expressed, recognized, and integrated (or excluded) in HBC networks.
• Limitations and future work:
  • Limited to patients capable of verbal communication, excluding those with significant cognitive or physical impairments.
  • Conducted in a specific cultural and regional context (Seoul, South Korea), which may limit generalizability.
  • Future work should explore non-verbal methods for capturing patient agency, comparative studies across diverse contexts, and long-term deployment of proposed designs.

Summary

This study investigates how patient agency manifests and is represented in home-based care (HBC) networks, revealing it as a relational capacity shaped by daily continuity, mutual recognition, and material environments. Despite these expressions, a significant representation gap exists due to rigid documentation systems, fragmented communication, and hierarchical decision-making. The authors propose design considerations to bridge this gap, including embedding patient values, facilitating mutual recognition, leveraging home environments as boundary objects, and democratizing information infrastructures. These findings contribute to HCI and healthcare by offering new frameworks and technological approaches to integrate patient agency into shared care planning, advancing patient-centered care in HBC.