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“这是你能得的最好的致命疾病”:对比患有囊性纤维化和先天性心脏病的青年父母的经历。

"This is the best fatal illness that you can have": contrasting and comparing the experiences of parenting youth with cystic fibrosis and congenital heart disease.

机构信息

Graduate Department of Exercise Science, University of Toronto, Toronto, Ontario, Canada.

出版信息

Qual Health Res. 2012 Feb;22(2):212-25. doi: 10.1177/1049732311421486. Epub 2011 Sep 2.

Abstract

Despite the important instrumental and emotional role that parents play in the lives of children with cystic fibrosis (CF) and congenital heart disease (CHD), qualitative researchers have not examined the similarities and differences between caregivers' experiences. Informed by thematic analysis, in this qualitative study I explored what it is like to care for a child with a chronic illness from the perspective of CF and CHD parents at a children's hospital in Canada. Pediatric caregiver stress was qualitatively different between CF and CHD parents, whereas temporal dilemmas were unique sources of stress for CF parents only. To alleviate stress, all parents drew on a three-way, interrelated process to comprehend their child's illness and acquire perspective. By opening up the social worlds of parents, I illuminate important similarities and differences in the caregiving experience of parents of youth with CF and CHD, and offer novel contributions to the literature.

摘要

尽管父母在囊性纤维化 (CF) 和先天性心脏病 (CHD) 患儿的生活中扮演着重要的工具性和情感角色,但定性研究人员尚未研究照顾者经历的相似之处和不同之处。在本定性研究中,我以加拿大一家儿童医院的 CF 和 CHD 父母为视角,通过主题分析,探讨了照顾慢性病患儿的感受。儿科照顾者的压力在 CF 和 CHD 父母之间存在明显差异,而时间困境则是 CF 父母特有的压力源。为了减轻压力,所有父母都通过一个三方面相互关联的过程来理解孩子的疾病并获得视角。通过揭示父母的社会世界,我阐明了 CF 和 CHD 患儿父母在照顾方面的重要相似之处和不同之处,并为文献做出了新的贡献。

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