Creating Safe Places: Understanding the Lived Experiences of Families Managing Cystic Fibrosis in Young Children
Zhaoyuan Su, S Kamath, Pornchai Tirakitsoontorn, Yunan Chen
Abstract
While previous HCI research has examined chronic care management for children, less is known about supporting families with young children facing serious illnesses. We interviewed 12 families affected by cystic fibrosis (CF) to understand their experiences and explore opportunities to support CF management. We identified three stages of CF management in young children: diagnosis at birth, parental navigation of CF management in the early years, and gradual involvement of children in their CF care. We underscore child development milestones as a key macro-temporal structure in children’s health management, the multifaceted and evolving parental values in crafting a safe place for children, and the balancing acts parents conduct to recreate this safe place as their children grow. We provide design implications to inform the future of child-centered and family-oriented health technologies that can evolve with parents’ and children’s values to assist in creating a safe environment for managing children’s health.