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

  • Author(s) / Creator(s)
  • 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.

  • Date created
    2007
  • Subjects / Keywords
  • Type of Item
    Article (Published)
  • DOI
    https://doi.org/10.7939/R3028PF91
  • License
    From: http://www.sagepub.com/authors/journal/permissions.sp Q 7 – What are my rights as author? A – It is important to check the policy for the journal to which you are submitting or publishing to establish your rights as Author. SAGE’s standard policies enable without the need to request permission the following rights: ...You may circulate or post on any repository or website the version of the article that you submitted to the journal (i.e. the version before peer–review) – \"version 1\". ...You may post on any non–commercial* repository or website* the version of your article that was accepted for publication – \"version 2\". The article may not be made available earlier than 12 months after publication in the Journal issue and may not incorporate the changes made by SAGE after acceptance. ...You may re–publish the whole or any part of the Contribution in a book written, edited or compiled by you provided reference is made to first publication by SAGE. The article may not be made available earlier than 12 months after publication in the Journal issue without permission from SAGE. ...You may make photocopies of the published article for your own teaching needs or to supply on an individual basis to research colleagues on a not–for–profit basis. ...You may not post the final version of the article as published by SAGE or the SAGE–created PDF – \"version 3\". ...All commercial requests or any other re–use of the published article should be forwarded to SAGE.
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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