Safeguarding precarious survival: Parenting children who have life-threatening heart disease

Gwen R. Rempel, Margaret J. Harrison

    Research output: Contribution to journalJournal Articlepeer-review

    73 Citations (Scopus)

    Abstract

    The purpose of this study is to describe the process of parenting a child with life-threatening heart disease. Despite advances in pediatric cardiac sciences, hypoplastic left heart syndrome remains difficult and controversial to treat. The Norwood surgical approach is a developing technology, and little is known about how mothers and fathers experience parenting a child who survives this treatment. Constructivist grounded theory informed this Canadian study that involved multiple interactive interviews with 9 mothers and 7 fathers of children with hypoplastic left heart syndrome who were at various stages of treatment. Extraordinary parenting in a context of uncertainty was evident as parents simultaneously safeguarded their child's precarious survival as well as their own survival. As technologically advanced treatment contributes to the survival of children with complex health conditions, health care professionals must consider how to promote and support parenting strategies that benefit the new survivors of technology as well as their families.

    Original languageEnglish
    Pages (from-to)824-837
    Number of pages14
    JournalQualitative Health Research
    Volume17
    Issue number6
    DOIs
    Publication statusPublished - Jul. 2007

    Keywords

    • Congenital heart disease
    • Grounded theory
    • Hypoplastic left heart syndrome
    • Parenting
    • Technology

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