Chronic Paradoxes: A Systematic Review of Qualitative Family Perspectives on Living with Congenital Heart Defects

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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.
Original languageEnglish
JournalQualitative Health Research
Issue number1
Pages (from-to)119-132
Publication statusPublished - 2020

    Research areas

  • Faculty of Social Sciences - congenital heart defects, chronic illness, chronic paradoxes, families, children's health, meta-ethnography, qualitative research, systematic review

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