skip to main content


Title: "I feel like I need to split myself in half": Using Role Theory to Design for Parents as Caregiving Teams in the Children's Hospital
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
Award ID(s):
2047432
NSF-PAR ID:
10410832
Author(s) / Creator(s):
; ; ; ; ; ;
Date Published:
Journal Name:
CSCW'22 Companion: Companion Publication of the 2022 Conference on Computer Supported Cooperative Work and Social Computing
Page Range / eLocation ID:
115 to 120
Format(s):
Medium: X
Sponsoring Org:
National Science Foundation
More Like this
  1. 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
  2. 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
  3. null (Ed.)
    Dementia affects >50 million worldwide, causing progressive cognitive and physical disabilities. Its caregiving burden falls largely onto informal caregivers, who experience their own health problems, and face tremendous stress with little support–all exacerbated during COVID-19. In this paper, we present a new caregiver sup- port perspective, where the lenses of health equity and community health can shape future technology design. Through a 1.5 year long, in-depth research process with dementia community health workers, we learned how caregiving support technology can reflect key concepts in dementia community health practice. This paper makes two contributions: 1) We propose employing embodied cueing, such as imitation or action mimicry, as a communication modality that can align technology with community caregiving approaches, promote agency in people with dementia, and relieve caregiver burden, and 2) We suggest new avenues for HCI research to advance health equity in the context of dementia technology design. 
    more » « less
  4. This research examined how caregiver experience (female primary caregiver or distributed caregiving with mom and dad) influenced 10‐, 14‐, and 16‐month‐olds’ visual preferences and attention toward internal facial features of female–male face pairs, and how these behaviors related to novelty preferences in a face recognition task and speed and accuracy on a visual search task. In the visual preference task, infants visually preferred male faces, regardless of caregiver experience. Despite similarities in visual preferences, infants’ attention toward females and males’ internal facial features was related for infants with distributed caregiving only. Infants’ performance across face processing tasks most often correlated for those with female primary caregivers. Results further our understanding of how infants with female primary caregivers display specialized processing of female faces, and how infants with distributed caregiving show similarities in their attention to female and male facial features.

     
    more » « less
  5. 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