It's About the Journey - Capturing Stories of the Fluctuating Experiences of Youth Kidney Transplant Patients.

Youth who undergo a kidney transplant can experience a fluctuation of successes and challenges throughout their chronic illness journey. Designing to capture their journey could help youth to reflect on their experiences, collaborate on their care, and be empowered to live their lives to the fullest. We interviewed 11 youth kidney transplant patients and 12 caregivers to elicit their transplant journey experiences.

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

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.

My Kidney Identity: Contextualizing pediatric patients and their families kidney transplant journeys.

Background: Even though having a kidney transplant is the treatment of choice for children with kidney failure, it can cause anxiety for patients and their families resulting in decreased psychosocial functioning, adherence, and self-management. We set out to identify the information needs required to help pediatric patients and their families contextualize their posttransplant experiences as they recalibrate their understanding of normalcy throughout their transplant journey.

Methods: Participants submitted photographs related to feeling: (1) worried, (2) confident, (3) similar to peers without kidney disease, and (4) different from these peers.