Journal
QUALITATIVE HEALTH RESEARCH
Volume 30, Issue 1, Pages 119-132Publisher
SAGE PUBLICATIONS INC
DOI: 10.1177/1049732319869909
Keywords
congenital heart defects; chronic illness; chronic paradoxes; families; children's health; meta-ethnography; qualitative research; systematic review
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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 kind of living 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 chronic paradoxes arising out of the transitions, normalities, and futures that families have to navigate.
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