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When a child is hospitalized with a serious illness, their family members must process emotional stress, quickly absorb complicated clinical information, and take on new caregiving tasks. They also have to coordinate with each other and with other family caregivers without abandoning existing work and home life responsibilities. Previous CSCW and HCI research has shown how the patient’s experience changes across the illness journey, but less is known about the effect of this journey on family caregivers and their coordination work. CSCW technologies could support and augment family care coordination work across the journey, reducing stress levels and improving families’ ability to stay connected and informed. In this paper, we report findings from an interview study we conducted with 14 parents of children undergoing extended hospitalization for cancer treatment. We propose the concept of caregiving coordination journeys and describe caregivers’ current communication and coordination practices across different phases of the hospitalization journey, from diagnosis and early hospitalization to extended hospitalization and beyond. We characterize families’ caregiving coordination routines across different time scales, and describe the current role of communication technologies in families’ coordination practices. We then propose design opportunities for social computing technologies to support and augment families’ communication and caregiving work during the hospitalization journey of their child.
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This content will become publicly available on November 11, 2025
Designing for Resilient Caregiving Coordination Journeys: Prioritizing Features Across Families and Phases
When a child is hospitalized with a serious illness such as cancer, parents and other close family often take on new roles as caregivers. Previous qualitative studies indicate that caregiving coordination work changes systematically across illness and treatment phases, but less is known about individuals’ technology preferences and how technology needs might change over time. In this study, we employed Q-methodology, a sorting technique for quantitatively analyzing subjective opinion. We interviewed 20 caregivers of children with cancer, who sorted 25 statements about potential design solutions. We describe four distinct caregiving coordination technology archetypes at diagnosis, and show how caregivers’ preferences change over time, eventually converging on one set of priorities during extended hospitalization.
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- Award ID(s):
- 2047432
- PAR ID:
- 10577174
- Publisher / Repository:
- ACM SIGCHI - CSCW 2024
- Date Published:
- ISBN:
- 9798400711145
- Page Range / eLocation ID:
- 525 to 532
- Format(s):
- Medium: X
- Location:
- San Jose Costa Rica
- Sponsoring Org:
- National Science Foundation
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