Designing for Resilient Caregiving Coordination Journeys: Prioritizing Features Across Families and Phases

Abstract

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.