Search for: All records

Caring for a child with cancer involves navigating through complex medical information, often delivered through lengthy handbooks and consultations with healthcare providers. Overnight, parents are expected to become an expert on a domain which they knew noth- ing about. Conversational UIs, powered by Large Language Models (LLMs) and validated information sources, could play a key role in supporting caregivers. In this paper, we investigate the usability, acceptance, and perceived utility of an LLM-based conversational AI tool for pediatric cancer caregiving, grounded in the Children’s Oncology Group Family Handbook–the leading resource in pe- diatric oncology care. We employed a mixed-methods approach, interviewing and surveying 12 caregivers as they engaged with a functional prototype. We offer insights into caregiver’s needs and expectations from AI-driven tools, and design guidelines for devel- oping safer, more personalized, and supportive AI interventions for pediatric cancer care. 

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. 

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. 

Meals are a central (and messy) part of family life. Previous design framings for mealtime technologies have focused on supporting dietary needs or social and celebratory interactions at the dinner table; however, family meals involve the coordination of many activities and complicated family dynamics. In this paper, we report on findings from interviews and design sessions with 18 families from the Midwestern United States (including both partners/parents and children) to uncover important family differences and tensions that arise around domestic meal experiences. Drawing on feminist theory, we unpack the work of feeding a family as a form of care, drawing attention to the social and emotional complexity of family meals. Critically situating our data within current design narratives, we propose the sensitizing concepts of generative and systemic discontents as a productive way towards troubling the design space of family-food interaction to contend with the struggles that are a part of everyday family meal experiences. 

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. 

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. 

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. 

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.