Childhood Worldings of Brittle Bone Disease: A Portrait in Five Triptych Research Poems

被引：0

作者：

Cleary, Brenda ^{[1
]}

Carnevale, Franco ^{[2
]}

Tsimicalis, Argerie ^{[3
]}

机构：

[1] McGill Univ, VOICE Res Grp, Montreal, PQ, Canada

[2] McGill Univ, Ingram Sch Nursing, McGill based VOICE Res program, Montreal, PQ, Canada

[3] McGill Univ, Ingram Sch Nursing, Montreal, PQ, Canada

来源：

JOURNAL OF CHILDHOOD STUDIES | 2023年 / 48卷 / 02期

关键词：

children with dis; abilities; found poetry; osteogenesis imperfecta; brittle bone disease; ethical dilemmas; perioperative care;

D O I：

暂无

中图分类号：

G40 [教育学];

学科分类号：

040101 ; 120403 ;

摘要：

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.

引用

页码：51 / 71

页数：21