Aging out of Children's Hospitals - Exploring the Transition Out of Pediatric Care for Youth with Rare Medical Conditions and their Social Support Networks
Abstract
This is an anthropological investigation of social support networks for Persons Living with a Rare Disease, their experiences within children’s hospitals and health systems, as well as their transitions from pediatric to adult health systems in Canada. Drawing on the virtual semi-structured interviews with PLWRD and their social support network, this thesis investigates: 1) who participates in the social support network, 2) the roles social support networks play in the transition to adult care, 3) what new social support networks form during and after the transition, 4) the supports and challenges. This research will be a unique contribution to disability scholarship and anthropology by highlighting the voices of my participants of their shared lived experiences of transitioning out of pediatric care, the unique challenges they face, the importance of having a strong social support network, and raising awareness for the overlooked population or rare diseases.