Navigating normalcy: designing personal health visualizations for pediatric kidney transplant recipients and caregivers

Abstract

Objectives Patients with chronic illnesses, including kidney disease, consider their sense of normalcy when evaluating their health. Although this concept is a key indicator of their self-determined well-being, they struggle to understand if their experience is typical. To address this challenge, we set out to explore how to design personal health visualizations that aid participants in better understanding their experiences post-transplant, identifying barriers to normalcy, and achieving their desired medical outcomes. Materials and Methods Pediatric kidney transplant patients and their caregivers participated in three asynchronous design sessions involving sharing experiences, presenting symbolic objects, and providing feedback on visualizations to understand their perceptions of normalcy post-transplant. Data analysis of design session 1 and 2 comprised deductive and inductive analysis. We used affinity diagramming to identify thematic areas about participants’ transplant experiences. Comprehension of design session three normalcy visualizations was also evaluated. Results Participants effectively engaged in the design sessions, revealing diverse perspectives on their experiences. We found there is a significant need for visualizations that depict normalcy to better inform patients and caregivers about their health. Discussion Normalcy Visualizations should incorporate three key design principles: personal values, facilitating peer and self-comparison, and seamlessly communicating abstract concepts to help youth kidney transplant recipients comprehend and contextualize if their transplant experience is normal and what normalcy means to them. Conclusion By incorporating holistic aspects of patients’ and caregivers’ lives into personal health visualizations, they can be cognizant of their progress to normalcy and empowered to make decisions that help them feel normal.