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Is "treat your child normally" helpful advice for parents of survivors of treatment of hypoplastic left heart syndrome?
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- Author(s) / Creator(s)
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BACKGROUND: Developing technology affords children with complex congenitally malformed hearts a chance for survival. Parents gratefully pursue life-saving options on behalf of their children, despite the risks to the life of their child, and uncertainty about outcomes. Little is known about how mothers and fathers experience parenting a child whose new state as a survivor may include less than optimal developmental sequels. METHOD: Our study involved multiple interactive interviews with 9 mothers and 7 fathers of infants and preschool children with hypoplastic left heart syndrome who had survived the Norwood surgical approach. Qualitative methodology included grounded theory methods of simultaneous collection and analysis of data, and we used open and selective coding of transcribed interviews. RESULTS: Parents used normalization in the context of uncertainty regarding the ongoing survival of their child. Parents described their underweight children as being on their own growth curve, and viewed their developmental progress, however delayed, as reason for celebration, as they had been prepared for their child to die. CONCLUSION: There is growing evidence that children with congenitally malformed hearts who require surgical intervention during the first year of life may experience developmental delay. The use of normalization by their parents may be effective in decreasing their worry regarding the uncertain future faced by their child, but may negatively affect the developmental progress of the child if they do not seek resources to assist development. Advice from paediatric specialists for parents to view their children as normal needs to be balanced with assistance for parents to access services to support optimal growth and development of their child.
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- Date created
- 2009
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- Type of Item
- Article (Published)
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- License
- From “Notes for Contributors” on the copyright form signed by the authors and sent to the Cambridge Journals, the publisher for Cardiology in the Young: Notwithstanding the assignment of copyright in their contribution, all contributors retain the following non-transferable rights ... The right to post the definitive version of the contribution as published at Cambridge Journals Online (in PDF or HTML form) in the Institutional Repository of the institution in which they worked at the time the paper was first submitted, or (for appropriate journals) in PubMedCentral or UK PubMedCentral, no sooner than one year after first publication of the paper in the journal, subject to file availability and provided the posting includes a prominent statement of the full bibliographical details, a copyright notice in the name of the copyright holder (Cambridge University Press or the sponsoring Society, as appropriate), and a link to the online edition of the journal at Cambridge Journals Online. Inclusion of this definitive version after one year in Institutional Repositories outside of the institution in which the contributor worked at the time the paper was first submitted will be subject to the additional permission of Cambridge University Press (not to be unreasonably withheld).