Identifying gaps in parental support for families of children with hypoplastic left heart syndrome.

Purpose: The purpose of this study is to identify gaps in support for parents of children with Hypoplastic Left Heart Syndrome.

Design And Methods: Using a mixed-methods approach, the researchers first studied the parental and care team experience through interviews of Hypoplastic Left Heart Syndrome mothers and members of the inter-professional care team and then conducted an international survey of 690 Hypoplastic Left Heart Syndrome primary caregivers to validate the qualitative findings.

Results: Parental and care team interviews revealed three main gaps in parental support, including lack of open communication, unrealistic parental expectations, and unclear inter-professional team roles.