“我的童年时光就此消逝”：加拿大儿童及青少年应对炎症性肠病的经历
"The Rest of my Childhood was Lost": Canadian Children and Adolescents' Experiences Navigating Inflammatory Bowel Disease.
作者信息
Barned Claudia, Fabricius Alexis, Stintzi Alain, Mack David R, O'Doherty Kieran C
机构信息
UHN Bioethics Program, 7989University Health Network, Toronto, Canada.
Pragmatic Health Ethics Research Unit, 5598Institut de recherches Cliniques de Montreal, Montreal, Canada.
出版信息
Qual Health Res. 2022 Jan;32(1):95-107. doi: 10.1177/10497323211046577. Epub 2021 Nov 24.
Abstract
Children and adolescents with Inflammatory Bowel Disease (IBD) face significant and unique challenges related to their condition. The aim of this study was to better understand some of these challenges, and to explore how Canadian youth respond to them. We interviewed 25 pediatric patients with IBD, ranging in age from 10-17, to find out about their illness experiences. Using a thematic analysis, we discerned three themes: , , and . Taken together, they paint a picture of young people facing great uncertainty prior to diagnosis, pronounced changes to selfhood as they make lifestyle adjustments, and facing difficulties with the implications of reduced sociability because of their disease. We conclude by providing recommendations for the development of resources aimed at helping newly diagnosed pediatric patients navigate these issues.
摘要
患有炎症性肠病（IBD）的儿童和青少年面临着与其病情相关的重大且独特的挑战。本研究的目的是更好地理解其中一些挑战，并探讨加拿大青少年如何应对这些挑战。我们采访了25名年龄在10至17岁之间的患有IBD的儿科患者，以了解他们的患病经历。通过主题分析，我们识别出了三个主题： ， ，以及 。总体而言，这些主题描绘了一幅年轻人在诊断前面临巨大不确定性、在进行生活方式调整时自我认知发生显著变化，以及因疾病导致社交性降低而面临困难的画面。我们通过为开发旨在帮助新诊断的儿科患者应对这些问题的资源提供建议来得出结论。
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