Designing for Caregiver-facing Values Elicitation Tools

Title of the Paper

Designing for Caregiver-facing Values Elicitation Tools

Paper Information

• Field of Study: Human-Computer Interaction Design and Health Information Technology
• Keywords: Values, Caregivers, End-of-life, Advance Care Planning, Reflection, Values-guided

Research Background and Problem

• Issues and Challenges:

  • During the end-of-life stage, patients are often unable to participate in decision-making due to their physical condition, transferring proxy decision-making authority to caregivers. Existing tools are primarily designed for patients, leaving caregivers without adequate support.
  • Caregivers may struggle to understand patients' values, potentially leading to decisions that do not align with patients' true intentions.
  • Value conflicts may arise between caregivers and family members, and sensitive topics such as death can hinder discussions.

• Significance:

  • End-of-life choices should prioritize values rather than solely focusing on medical treatment outcomes.
  • Many caregivers report feeling unprepared for decision-making; tools that support caregivers can improve decision satisfaction and grief adjustment.

• Research Motivation and Related Work:

  • Current research on values-guided tools primarily focuses on patients. Few studies acknowledge the importance of caregivers but fail to systematically design suitable tools.
  • Literature indicates that caregivers need more support in identifying patient value needs, negotiating with family members, and reaching consensus during decision-making.

Solution

• Method or Solution:

  • This study employs the "Research through Design" (RtD) approach to develop and test low-fidelity prototypes of values-guided tools specifically for caregivers.
  • The prototypes incorporate different types of questions, input/output methods, and collaborative functionalities to explore caregiver needs.

• Innovative Contributions:

  • This is the first systematic exploration of design requirements for caregiver-specific values-guided tools.
  • It proposes design strategies to help caregivers balance patient values with their own and clarify shared decision-making.

• Implementation Steps and Key Techniques:

  • Development of five low-fidelity prototypes: including a story narration tool, serious illness conversation tool, happiness profile tool, decision box tool, and task list tool, each targeting different objectives (e.g., reflection and collaboration).
  • Evaluation of user responses and tool practicality through descriptive displays, open-ended questions, and interactive content design.

Research Findings

• Specific Findings:

  • Identified key design considerations for caregiver-facing values-guided tools:
    1. Tools should assist caregivers in clarifying both their own and the patient's values while addressing value conflicts.
    2. Tools should prioritize individualized decision-making support, followed by multi-party collaboration interface design.
    3. To address caregivers' limited perception of tool usability, emphasize educational usage guidance.
    4. Output content should be both sensitive and actionable, such as generating concrete task lists or narratives.

• Advantages:

  • Enhances caregivers' decision-making capabilities, reduces decision conflicts, and improves recognition of patient values.
  • Strengthens consensus-building among family members or medical teams.

• Experiment and Evaluation Results:

  • Interviews with 12 caregivers from different age groups, testing interaction experiences with various prototype tools, revealed:
    • Caregivers generally found the tools structured the decision-making process more effectively.
    • Elements such as emotional narratives or visualized outputs significantly reduced burdens and facilitated reflection.
    • Complex issues might lead caregivers to avoid discussions; tools should provide guidance and educational support in such cases.

• Limitations and Future Directions:

  • Limitations: Tools were not tested in real medical scenarios; participants were primarily family caregivers, excluding spousal caregivers.
  • Future Directions:
    1. Conduct on-site testing of tool usage to verify practical effectiveness.
    2. Design values-guided tools tailored to diverse cultural backgrounds and caregiver groups.
    3. Conduct specialized research on psychological support and tool needs for spousal caregivers.

Conclusion and Design Implications

• Design Implications:
  1. Tools should educate and motivate caregivers to understand the importance of values in decision-making.
  2. Support both bottom-up value exploration and top-down guided question design.
  3. Provide sensitive yet concrete outputs, such as narrative descriptions or itemized task lists.
  4. Select single-user or multi-party collaboration functionalities based on caregiver usage scenarios, gradually introducing collaborative interfaces.

Through these steps and insights, the tools not only enhance caregivers' decision-making abilities but also promote consensus among family members, improving overall end-of-life care quality.