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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Supporting Caring among Intergenerational Family Members through Family Fitness Tracking
We present results from a qualitative study involving eight intergenerational families (27 participants) to understand how a family tracking intervention can help support care among intergenerational family members. Our findings show that family members communicate and stay aware of each other's' health through shared fitness data and conversations triggered by fitness sharing. We identified different challenges and preferences among the three age groups in our study: older adults enjoyed family fitness sharing but often encountered various technical challenges, the middle-aged group served as a key person to care for the rest of the family members, and the young generation could not fully engage in fitness sharing due to their busy schedule and privacy concerns. These findings suggest the design of family fitness sharing to account for the age differences in intergenerational families and support the unique needs of family fitness sharing.
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- Award ID(s):
- 1850389
- NSF-PAR ID:
- 10252701
- Date Published:
- Journal Name:
- Proceedings of the 14th EAI International Conference on Pervasive Computing Technologies for Healthcare
- Page Range / eLocation ID:
- 1 to 10
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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- Free Publicly Accessible Full Text
-
Accepted Manuscript1.0
- Conference Paper:
- https://doi.org/10.1145/3421937.3422018
