As they enter long-term survivorship, young adult cancer survivors grow into Active Architects of personalized digital support ecosystems, strategically curating resources across diverse platforms, from social media to specialized forums. Previous HCI research has shown how these individuals use technology through the early stages of their journey, to both support their needs and leverage their strengths. However, less is known about how technology might support survivors’ transition from self-management (task-oriented illness management) to self-advocacy, involving systemic, outward-facing action. This paper adopts a reflexive-interventionist approach, grounded in an interview study with 14 young adult cancer survivors who were diagnosed across childhood and adolescence. We show how their practices evolve across the journey, from family-mediated interactions during acute illness to autonomous curation, community stewardship, and advocacy. We articulate design implications for supporting ecosystem curation, accounting for evolving user expertise, and creating pathways that honor both ongoing challenges and developing capabilities.

Parental caregivers of young children with cancer face a distinct challenge in the home context: their children often cannot verbally articulate symptoms, requiring caregivers to develop embodied expertise through sustained observation and intuitive sensing. This paper examines how wearable technologies might support these caregivers, through semi-structured interviews with twelve primary caregivers, analyzed using Value Sensitive Design informed by Tronto’s ethics of care. Our findings establish caregiver agency as the central organizing principle for wearable design in this context. Caregivers function as primary interpreters who translate behavioral and physiological cues into actionable understanding, and they require technologies that enhance rather than supplant this interpretive role. We identify three value tensions that structure the design space: visibility versus privacy in monitoring, palliative versus curative care orientations, and caregiver autonomy versus child safety. We conclude with design implications for wearables that support interpretive competence, manage information asymmetry between parent and child, and sustain caregiver wellbeing across extended treatment periods.

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 nothing 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 pediatric 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 developing safer, more personalized, and supportive AI interventions for pediatric cancer care.

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.