Abstract
Seriously ill young people in the United States may face an array of complications with inconsistent insurance coverage and healthcare access, intrapersonal and interpersonal challenges, and uncertain futures. This research assesses pediatric palliative care as a complex adaptive system, with emphasis on diagnosis and illness progression in relation to emergent resilience. The project sought to explore “what it’s like” for young people (12-17yo) to experience a serious illness from the perspective of providers familiar with the population. The summative findings provide novel conceptual, practical, and policy insights about relational significance in the quality of life of ill young people, particularly in consideration complex moral experiences, moral emotions, and resilience. The resulting model bridges together a variety of key concepts, and illustrates how providers and families may offer enhanced support to young people facing the end of life. A corresponding reframing of the concept of a “good death” is provided.
Presenters
Andrea St.HilaireStudent, PhD in Interdisciplinary Studies, University of Glasgow, United Kingdom
Details
Presentation Type
Theme
KEYWORDS
Moral Experience, Resilience, Pediatrics, Communication, Empowerment, Complex Systems, Palliative Care
