“I’ll Just Do It”: Designing for the Hidden Work of Collaborative Family Caregiving

Paper Title

“I’ll Just Do It”: Designing for the Hidden Work of Collaborative Family Caregiving

Publication Info

• Topic area: Human-Computer Interaction (HCI) and caregiving technologies
• Keywords: Family caregiving, collaborative care, activation costs, task shareability, chronic illness, hematopoietic cell transplantation, proactive support, reactive support, caregiving technologies, HCI.

Background and Problem

• Problem / challenge: Existing caregiving technologies often focus on supporting a single primary caregiver and overlook the conditions that make caregiving tasks shareable, as well as the emotional and logistical barriers to delegation.
• Significance: Addressing these gaps is critical because caregivers’ well-being directly impacts patient outcomes, and unsustainable caregiving burdens can lead to emotional exhaustion, physical health decline, and disrupted employment.
• Motivation and related work: Prior HCI research has explored caregiving roles, emotional resilience, and logistical support but has largely assumed that one caregiver manages most responsibilities. Collaborative caregiving has been studied in terms of task categories or the number of people involved, but the activation costs and constraints shaping help-seeking behaviors remain underexplored.

Solution

• Proposed approach: A shareability perspective on caregiving tasks combined with proactive and reactive technological support to reduce activation costs and enable sustainable collaboration.
• Novelty:
  1. Identifies conditions that make caregiving tasks shareable and the barriers to delegation.
  2. Introduces activation costs as a key factor influencing caregivers’ decisions to seek help.
  3. Proposes design implications for technologies that balance proactive and reactive support based on task shareability and caregivers’ needs.
• Procedure and key techniques:
  • Conducted activity-based qualitative interviews with 10 family caregivers of hematopoietic cell transplantation (HCT) patients.
  • Used journaling, photo-based activities, and thematic analysis to capture lived experiences and identify patterns in caregiving practices, resource use, and support-seeking behaviors.

Results

• Concrete findings:
  • Logistical tasks (e.g., meals, errands) are readily shareable, while emotionally sensitive or medically complex tasks are harder to delegate.
  • Activation costs (e.g., guilt, privacy concerns, cognitive effort) often prevent caregivers from seeking help, even when support is available.
  • Proactive support (e.g., automated task matching) and reactive support (e.g., lightweight communication tools) can reduce these barriers.
• Advantage over baselines: Shifts focus from the availability of resources to the conditions that make them usable, emphasizing the importance of minimizing activation costs and tailoring support to caregivers’ lived experiences.
• Experiments / evaluation:
  • Interviews with 10 caregivers of HCT patients during inpatient and outpatient care phases.
  • Analysis of task shareability, activation costs, and resource use across contexts.
• Limitations and future work:
  • Limited participant diversity (mostly White, English-speaking, resource-stable caregivers).
  • Focused only on primary caregivers, excluding secondary caregivers and patients.
  • Future work should include diverse caregiving networks, continuous documentation methods, and evaluation of potential burdens introduced by caregiving technologies.

Summary

This study examines how family caregivers navigate support resources and make decisions about task delegation in the high-intensity context of hematopoietic cell transplantation. It introduces the concept of task shareability and activation costs, showing how emotional and logistical barriers influence caregivers’ ability to mobilize support. The findings highlight the need for technologies that balance proactive and reactive support, enabling sustainable caregiving by reducing cognitive and emotional burdens. These insights extend HCI caregiving research by focusing on the conditions that make resources usable rather than merely available.