Childhood Worldings of Brittle Bone Disease: A Portrait in 5 Triptych Research Poem
Abstract
This paper offers a collection of found poems offering insights into representative worlds of children living with dis/abilities, chronic hospitalizations, and the ethical dilemmas surrounding their perioperative care. The collection represents the sum tota poetic crystallization of a multiyear ethnography focused on the ethical experiences of the childhood osteogenesis imperfecta community as encountered in a specialized North American pediatric OI clinic. The collection deliberately bridges multiple separate (yet deeply connected) worlds of children, clinicians, and family members to reveal their interdependence and yet preserve each individual’s distinct viewpoints.
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Cleary, B., Carnevale, F. A., & Tsimicalis, A. (2022). Poetics of brittle bone disease: Using found poetry to explore childhood bioethics. Journal of Poetry Therapy, 35(4). https://doi.org/10.1080/08893675.2022.2043120
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Wang, Y. W., Carnevale, F. A., Chougui, K., & Tsimicalis, A. (2022). How children’s participation ought to be practiced: A preliminary ethical framework to optimize the participation of children with osteogenesis imperfecta in health care. Journal of Clinical Nursing. https://doi.org/10.1111/jocn.16398
Copyright (c) 2023 Brenda Cleary, Franco Carnevale, Argerie Tsimicalis
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