This dissertation 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. A generation ago few children diagnosed with severe disability survived to adulthood. Today, the average pediatric post-transplant heart patient survives 12-18 years. Nevertheless, transition is marked by a just as young people gain responsibility for their care.
Arising from ongoing participatory research on advanced heart failure (AdHF) medicine with medical practitioners, patients and family caregivers, this qualitative study examines visual storytelling as transformational pedagogy. Using youth participatory action research (YPAR), situated between critical media literacy production and pedagogies of transformational resistance, this dissertation is an ethnography of a collaborative video storytelling project with two young women who each received multiple heart transplants as children and are coming of age in the context of high-tech medicine. By means of visual storytelling, I sought to support young women in transition and discover: a) what stories they define as important to share; b) what narratives get chosen, discarded and revised, c) how narrative decisions are made within collaborative practices and, d) how knowledge about living within biotechnological culture is constructed.
The dissertation is organized in three parts. The first part provides the context for storytelling as a means to examine transition in pediatric transplant medicine. The second part is an ethnography of learning that discusses collaborative research through three stages of video production. The third and final part positions collaborative storytelling as a form of transformational pedagogy and highlights youth expertise within the knowledge ecology of medical care.
Research findings reveal the tensions associated with coming of age in the interstices of disability/difference while living with existential uncertainty and the rituals of care that structure daily life. Through educational research I seek to build narratives of positionality, practice and pedagogy that create communities for learning and living within the transitory spaces of modern medicine.