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


Author or creator
Rempel, Gwen R.
Harrison, Margaret J.
Additional contributors
congenital heart disease
hypoplastic left heart syndrome
grounded theory
Type of item
Journal Article (Published)
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.
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Citation for previous publication
Rempel, G. R., & Harrison, M. J. (2007). Safeguarding precarious survival: Parenting children who have life-threatening heart disease. Qualitative Health Research, 17(6), 824-837. doi:10.1177/1049732307303164
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