title: Facets of parenting a child with hypoplastic left heart syndrome.
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 (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.
authors.affiliation: Faculty of Nursing, University of Alberta, Edmonton, AB, Canada.
authors.forename: Gwen R
authors.initials: GR
authors.lastname: Rempel
authors.forename: Laura G
authors.initials: LG
authors.lastname: Rogers
authors.forename: Vinitha
authors.initials: V
authors.lastname: Ravindran
authors.forename: Joyce
authors.initials: J
authors.lastname: Magill-Evans