Grant: Doctoral Award - Frederick Banting and Charles Best Canada Graduate Scholarships

An antenatal diagnosis of a complex congenital heart defect (CHD), the most common structural congenital malformation, can have crippling effects on the psychological well-being of parents, undermining the future health of parents and child. Emerging research indicates parents who choose to end a pregnancy or pursue complex neonatal treatments following antenatal diagnosis of CHD often face significant mental health concerns. Improving communication and parental decision making support is the most important action health care providers (HCPs) can take to ensure quality and equitable care during this emotionally difficult time. Contextual factors such as an emphasis on efficiency and biomedical concerns in HCP-parent interactions may limit communication and contribute to parental distress and inadequate support. Moreover, HCP-parent interactions that focus on pregnancy or complex treatment options may obscure the broad range of experiences and decisions parents face. In addition, socioeconomic, gender and other differences between HCPs and parents can influence parents' decision making to align with what HCPs view as in the parents' best interests without a detailed discussion of the family's preferences or beliefs. This study seeks to understand the complex communication and decision making dynamics involved when parents receive an antenatal diagnosis of complex CHD in order to improve parental participation, ease parents' distress, and foster equity in decision support. The study will involve a qualitative analysis of in-depth interviews with parents and HCPs, observation of HCP-parent interactions, and review of organizational data. Parents from diverse backgrounds will be recruited including those who continue or end their pregnancy following antenatal diagnosis of CHD. Research findings have the potential to promote equity in decision making support, develop explicit tools for practice, guide clinical training programs, and inform healthcare system policies.