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Nursing Research and Practice
Volume 2012 (2012), Article ID 714178, 9 pages
http://dx.doi.org/10.1155/2012/714178
Research Article

Facets of Parenting a Child with Hypoplastic Left Heart Syndrome

1Faculty of Nursing, University of Alberta, Edmonton, AB, Canada
2Department of Pediatrics, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, AB, Canada
3Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, AB, Canada

Received 2 November 2011; Accepted 4 January 2012

Academic Editor: Jane Noyes

Copyright © 2012 Gwen R. Rempel et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

The purpose of the study was to conceptualize the needs of parents of young children with hypoplastic left heart syndrome (HLHS) to provide a theoretical framework to inform the development of future parent interventions. Participants were parents and grandparents ( ) of 15 young children who had undergone the Sano surgical approach for HLHS. Analysis of recorded and transcribed single interviews with each participant was done as directed by interpretive description methodology. A model of five facets of parenting was conceptualized. These included survival parenting, “hands-off” parenting, expert parenting, uncertain parenting, and supported parenting. The facets of parenting delineated through this study provide a theoretical framework that can be used to guide the development and evaluation of interventions for parents of children with complex congenital heart disease and potentially other life-threatening conditions. Each facet constitutes a critical component for educational or psychosocial intervention for parents.