Facets of Parenting a Child with Hypoplastic Left Heart Syndrome

Abstract EN

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.