Learning to Care: How Young Heart Transplant Patients Transition to Adulthood

Nadine Tanio

Heart transplantation is unique to high-tech medicine and remains an experience unknown to all but a few. My work explores how young heart transplant patients envision, articulate and navigate their transition from pediatric to adult medical care. In other words, it focuses on how young people learn to care for themselves in the context of modern medicine where biotechnological advancements, like organ transplantation, are transforming our understanding of our bodies and ourselves through the melding of human physiology with medicine.This study is a collaborative project. It aims to produce short educational videos that youth participants can use and share within their communities, while identifying opportunities for educators, caregivers and health care professionals to support young people through their transition. All transitions are imbued with risk and possibility, but for transplant recipients transition from pediatric to adult care is a decidedly perilous time when adolescents and young adults have higher mortality rates than their younger cohorts. Through educational research I explore narratives of positionality, practice, knowledge production and pedagogy aimed at building communities for learning and living within the transitory spaces of high-tech modern medicine.

About Nadine Tanio

Nadine Tanio is a doctoral candidate in Education at UCLA’s Graduate School of Education and Information Studies. She earned a bachelor’s degree in Psychology and History at UCLA and her Master’s in Sociocultural Anthropology at UC Berkeley before working in documentary and public television. Nadine is interested in education as a tool for social justice, health and well-being. Her dissertation uses a participatory approach that engages young people as critical thinkers in creating peer-to-peer teaching and learning videos.