Dissertation Proposal Defense - Julia Dunbar
Towards Understanding and Capturing the Journeys of Youth Living with a Chronic Illness to Support Reflection and Facilitate Engagement
Abstract: Different types of chronic illnesses ranging from heart disease to diabetes have become a part of many people’s lives and healthcare continues to expand to help support people living with these different illnesses. There continues to be great technological strides in helping both adults and youth with chronic illnesses in managing their healthcare needs, such as taking their medicines or remembering to go to their doctor's visits. However, even though some technologies help patients manage their illness, youth with severe chronic illnesses still struggle to maintain their health and are at a higher risk for complications with their chronic illnesses.
Growing up with a severe chronic illness requires many different interconnecting pieces to work together and throughout different points of their chronic illness experiences youth and their caregivers may struggle to find harmony between youth’s healthcare and life needs, causing unforeseen complications. In this dissertation proposal, I will demonstrate how capturing youth chronic illness journeys can help youth reflect on their experiences, identify barriers for their needs, and work towards self-efficacy. I am doing this work in the context of youth who have undergone kidney transplantation as a focused example of a chronic illness journey. I will use in-depth interviews, surveys, and a technology probe to understand how to design a tool to help youth with chronic illnesses capture their journey. Youth with chronic illnesses already have to change many aspects of their lives to accommodate their illness. I hope by capturing a more comprehensive view of their chronic illness journey and identifying barriers towards harmonizing their healthcare and life needs it will encourage them to take more control of their lives and live their lives to the fullest.
Supervisory Committee
Co-chair: Wanda Pratt, Professor, Associate Dean for Inclusion, Diversity, Equity, Access & Sovereignty (IDEAS), Information School, University of Washington
Co-chair: Ari Pollack, Assistant Professor of Pediatrics, Division of Nephrology, University of Washington Medical School
GSR: Julie Kientz, Professor, Department Chair, Human Centered Design & Engineering, University of Washington
Member: Alexis Hiniker, Associate Professor, Ph.D. Program Chair, Information School, University of Washington