Thesis Format
Monograph
Degree
Master of Arts
Program
Anthropology
Supervisor
Block, Pamela
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.
Summary for Lay Audience
One in 12 Canadians has a rare disease, which is defined as a life-threatening, chronic, or weakening condition that affects a small number of individuals. Yet, as rare diseases affect only a small proportion of patients, doctors often struggle to identify possible diagnoses and treatments. Social support networks are essential to coping with experiencing rare diseases. Social support networks include family, friends, and relationships with individuals and groups found through institutions such as hospitals, research institutes, and community groups (in-person and online). My research is an anthropological investigation of social support networks for Persons Living with a Rare Disease (PLWRD), their experiences within children’s hospitals and health systems, as well as their transitions from pediatric to adult health systems in Canada. My research investigates: 1) who participates in the support and social network, and what do they provide, seek, find and find lacking in terms of support through their participation 2) what role do social support networks play in the transition from pediatric to adult care 3) what new social support networks and support needs take form during and after this transition 4) what are the supports and challenges PLWRD and their social support networks face in pediatric care that they continue to face in adult care? What new challenges and support emerge in adulthood? I conducted virtual semi-structured interviews via Zoom with PLWRD, who have previously experienced support from children’s hospitals, family members, and various other services in Canada. I interviewed individuals within the patient’s network as well. My research will be a unique contribution to disability scholarship by enhancing the sharing of lived experience narratives about transitioning out of pediatric care. It will create and share new insights from PLWRD experiences and support the development of new strategies and approaches to increase awareness about rare diseases, provide a deeper understanding of the lives of PLWRD as they transition into adulthood, and advocate for needed support and services.
Recommended Citation
Kassem, Dima, "Aging out of Children's Hospitals - Exploring the Transition Out of Pediatric Care for Youth with Rare Medical Conditions and their Social Support Networks" (2024). Electronic Thesis and Dissertation Repository. 10438.
https://ir.lib.uwo.ca/etd/10438
Creative Commons License
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