An official website of the United States government
When a child is admitted to the hospital with a critical illness, their family must adapt and manage care and stress. HCI and Computer-Supported Cooperative Work (CSCW) technologies have shown the potential for collaborative technologies to support and augment care collaboration between patients and caregivers. However, less is known about the potential for collaborative technologies to augment family caregiving circles experiences, stressors, and adaptation practices, especially during long hospitalization stays. We interviewed 14 parents of children with cancer admitted for extended hospitalizations in this work. We use the Family Adaptive Systems framework from the family therapy fields as a lens to characterize the challenges and practices of families with a hospitalized child. We characterize the four adaptive systems from the theory: Emotion system, Control system, Meaning, and Maintenance system. Then, we focus on the Emotion system, suggesting opportunities for designing future collaborative technology to augment collaborative caregiving and enhance family resilience.
more »
« less
This content will become publicly available on November 7, 2025
Family Resilience in Care Coordination Technologies: Designing for Families as Adaptive Systems
When a child is admitted to the hospital with a critical illness, their family must adapt and manage care and stress. CSCW researchers have shown the potential for collaborative technologies to support and augment care collaboration between patients and caregivers. However, as a field CSCW lacks a holistic, theory-driven understanding of how collaborative technologies might best augment and support the family caregiving circle as a socio-technical system. In this paper, we report findings from interviews with 14 parents of children with cancer admitted for extended hospitalizations. We use the resilience-based Family Adaptive Systems framework from family therapy as a lens to characterize their challenges and practices across four key subsystems: Emotion, Control, Meaning, and Maintenance. Then, we introduce a fifth system-the Information system-and draw on our empirical findings to suggest theory-driven opportunities for designing future collaborative technology to augment collaborative caregiving and enhance family resilience.
more »
« less
- Award ID(s):
- 2047432
- PAR ID:
- 10577182
- Publisher / Repository:
- ACM
- Date Published:
- Journal Name:
- Proceedings of the ACM on Human-Computer Interaction
- Volume:
- 8
- Issue:
- CSCW2
- ISSN:
- 2573-0142
- Page Range / eLocation ID:
- 1 to 28
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
More Like this
-
-
During a health crisis, such as the hospitalization of a child with a serious illness, families must adjust and support each other in coordinating care. CSCW researchers have shown the potential for collaborative technologies to enhance social support in different settings. However, less is known about the potential for CSCW technologies to augment social support practices within family caregiving circles. In this poster, we describe findings from 14 interviews with parents of children hospitalized for cancer treatment. We categorized the support practices between parents and found that they rely heavily on technology to support each other from a distance. We identified opportunities for designing future collaborative technology to augment social support in caregiving teams.more » « less
-
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.more » « less
-
When their child is hospitalized, parents take on new caregiving roles, in addition to their existing home and work-related responsibilities. Previous CSCW research has shown how technologies can support caregiving, but more research is needed to systematically understand how technology could support parents and other family caregivers as they adopt new coordination roles in their collaborations with each other. This paper reports findings from an interview study with parents of children hospitalized for cancer treatment. We used the Role Theory framework from the social sciences to show how parents adopt and enact caregiving roles during hospitalization and the challenges they experience as they adapt to this stressful situation. We show how parents experience 'role strain' as they attempt to divide caregiving work and introduce the concept of 'inter-caregiver information disparity.' We propose design opportunities for caregiving coordination technologies to better support caregiving roles in multi-caregiver teams.more » « less
-
BackgroundAlthough family caregivers play a critical role in care delivery, research has shown that they face significant physical, emotional, and informational challenges. One promising avenue to address some of caregivers’ unmet needs is via the design of digital technologies that support caregivers’ complex portfolio of responsibilities. Augmented reality (AR) applications, specifically, offer new affordances to aid caregivers as they perform care tasks in the home. ObjectiveThis study explored how AR might assist family caregivers with the delivery of home-based cancer care. The specific objectives were to shed light on challenges caregivers face where AR might help, investigate opportunities for AR to support caregivers, and understand the risks of AR exacerbating caregiver burdens. MethodsWe conducted a qualitative video elicitation study with clinicians and caregivers. We created 3 video elicitations that offer ways in which AR might support caregivers as they perform often high-stakes, unfamiliar, and anxiety-inducing tasks in postsurgical cancer care: wound care, drain care, and rehabilitative exercise. The elicitations show functional AR applications built using Unity Technologies software and Microsoft Hololens2. Using elicitations enabled us to avoid rediscovering known usability issues with current AR technologies, allowing us to focus on high-level, substantive feedback on potential future roles for AR in caregiving. Moreover, it enabled nonintrusive exploration of the inherently sensitive in-home cancer care context. ResultsWe recruited 22 participants for our study: 15 clinicians (eg, oncologists and nurses) and 7 family caregivers. Our findings shed light on clinicians’ and caregivers’ perceptions of current information and communication challenges caregivers face as they perform important physical care tasks as part of cancer treatment plans. Most significant was the need to provide better and ongoing support for execution of caregiving tasks in situ, when and where the tasks need to be performed. Such support needs to be tailored to the specific needs of the patient, to the stress-impaired capacities of the caregiver, and to the time-constrained communication availability of clinicians. We uncover opportunities for AR technologies to potentially increase caregiver confidence and reduce anxiety by supporting the capture and review of images and videos and by improving communication with clinicians. However, our findings also suggest ways in which, if not deployed carefully, AR technologies might exacerbate caregivers’ already significant burdens. ConclusionsThese findings can inform both the design of future AR devices, software, and applications and the design of caregiver support interventions based on already available technology and processes. Our study suggests that AR technologies and the affordances they provide (eg, tailored support, enhanced monitoring and task accuracy, and improved communications) should be considered as a part of an integrated care journey involving multiple stakeholders, changing information needs, and different communication channels that blend in-person and internet-based synchronous and asynchronous care, illness, and recovery.more » « less
