慢性悖论：先天性心脏病患者家庭生活的定性观点系统综述。
Chronic Paradoxes: A Systematic Review of Qualitative Family Perspectives on Living With Congenital Heart Defects.
机构信息
The Danish Heart Foundation, Copenhagen, Denmark.
Department of Anthropology, University of Copenhagen, Copenhagen, Denmark.
出版信息
Qual Health Res. 2020 Jan;30(1):119-132. doi: 10.1177/1049732319869909. Epub 2019 Sep 16.
There have been substantial advances in the diagnostics and treatment of congenital heart defects (CHDs) in recent decades, and this has improved survival significantly. Consequently, there is a growing interest in how CHDs affect the daily lives of children and youth. We examine life with CHDs as a particular from the perspectives of both children and youth with CHDs and their families through a systematic review of existing qualitative research. Based on a meta-ethnographic analysis of 20 articles (identified through PubMed, EMBASE, EBSCOhost, PSYCHinfo, Scopus, and Web of Science from January 7 to 12, 2016), we argue that living with CHDs is characterized by arising out of the transitions, normalities, and futures that families have to navigate.
近几十年来，先天性心脏病（CHD）的诊断和治疗取得了实质性进展，这显著提高了生存率。因此，人们越来越关注 CHD 如何影响儿童和青少年的日常生活。我们通过对现有定性研究的系统回顾，从 CHD 患儿及其家庭的角度来考察 CHD 患儿的生活。基于对 20 篇文章的元人种学分析（通过 2016 年 1 月 7 日至 12 日在 PubMed、EMBASE、EBSCOhost、PSYCHinfo、Scopus 和 Web of Science 上确定），我们认为，CHD 患儿的生活特点是家庭必须应对的过渡、常态和未来所带来的挑战。
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