There is so much more to a child than their heart" : Supports and services for children with complex congenital heart disease and their parents : final report

The negative results of the gap between needs and services are striking for both the child and the parents. [...] First, the system that saves the baby at an enormous financial cost has not yet provided comprehensive, ongoing support and care for the child within the community and family context; care that comes at a fraction of the cost of the existing life-saving treatment. [...] As services are refined to better meet the needs of families, research is required to evaluate parent and child-focused interventions to address the regulatory and emotional needs of the children, and the emotional needs of the parents, especially related to pediatric medical trauma and traumatic stress responses. [...] Purpose of Current Study The purpose of this study was to delineate needs from the perspective of parents and service providers of children with HLHS and to identify the services and resources used and needed by parents to support themselves, their children, and their family. [...] Descriptive statistics of the numeric data and content and thematic analysis of the qualitative data contributed to an in- depth understanding of the service needs of parents in relation to parenting their child with CHD.