Facets of parenting a child with hypoplastic left heart syndrome

• Author(s) / Creator(s)

  • Rempel, G.
  • Magill-Evans, J.
  • Rogers, L.G.
  • Ravindran, V.

• 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 informthe development of future parent interventions. Participants were parents and grandparents (n = 53) 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.

• Date created

  2012

• Subjects / Keywords

  • Children
  • Hypoplastic left heart syndrome
  • Parent & child

• Type of Item

  Article (Published)

• DOI

  https://doi.org/10.7939/R3QJ7815Q

• License

  Attribution 3.0 International