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. We found that probing participants about specific parts of their transplant journey gave them structure to tell us rich stories about their experiences. Based on our findings, we discuss informing the design of a tool to support the capturing of stories for youth with chronic illnesses. Designing such tool could help youth and their caregivers to identify barriers, support reflection, and promote self-efficacy. Youth with chronic illnesses already have to change so many aspects of their lives to accommodate their illness, however, by giving them a platform to capture their chronic illness journey, it could encourage them to take more control of their lives and better collaborate with others.