Designing visual communication of everyday illness experiences in pediatric care

Abstract

In complex chronic care, patients' ongoing awareness of their health status and ability to articulate health needs are vital to active participation in care, yet they face various challenges that could thwart their potential to engage in such participation. My research explores how design methods in HCI can evolve to meet these challenges by engaging both adolescents and family caregivers throughout the process of tracking the patients' illness experiences and co-designing rich representations that are expected to support adolescents' communication of these experiences in care. This thesis will contribute 1) a critical understanding of the ways in which human-centered design can address primary challenges that adolescents face when engaging in care, 2) a novel method for conducting co-design research with chronically ill patient families, and a 3) family-centered mobile health technology that demonstrates the feasibility of engaging pediatric patient families.