Symptom communication in pediatric cancer care

Talking about symptoms  during clinical visits is difficult but necessary, especially for long cycles treatments like chemotherapy. Adolescent patients find it difficult to express how symptoms affect daily activities while their parents fill in for them instead. Through a series of ongoing design studies, this project (COOP) explores how we bridge the gap in patient—clinician communication to co-design mobile health tools.

Project I: Co-Designing tools with patient families

I worked with a team to design a visual language for patients and parents to narrate how symptoms affect their daily activities. We selected key activities and symptoms based on inputs from clinicians. In co-design sessions with 13 patients and families, participants (both parents and patients) created collaborative storyboards of a day in their lives using the library of 72 visual Observations of Daily Living (visual ODLs). A sample set of visual ODLs are shown here with the process of our study. You can read more in the paper here.

Project II: Co-Designing tools with clinician teams

Visual ODLs facilitated first-person accounts, however we wanted to know how this generated experiential data could be presented for clinician review.

This was my Masters project (advised by Dr. Lauren Wilcox). I developed paper-based prototypes of information dashboards for clinican teams to review. I conducted interviews with 8 clinicians and analyzed two sets of interviews including initial inputs from Project I.

Clinicians shared feedback on the role of visual ODLs in their pediatric cancer care workflow. I found three use cases for visual narratives in driving conversations to guide the design of a shared interface. To read more about clinician preferences and feedback, read the paper here.

Project III: Just-in-Time design (Proposed mHealth framework)

The visual ODLs are a language to inform tools in a larger mobile health framework. The experiment aims to capture design feedback in the contexts where patients and parents observe changes in their daily lives using ubiquitous technologies. An initial workshop paper explains this idea in detail.

I contributed design prototypes to a two part diary study to collect visual narratives in the wild. First, a physical diary with visual ODL stickers is currently underway for a longitudinal study involving patient and family members. Second, a mobile-based diary is under development based on the findings of this study.