Grant: Doctoral Research Award: Priority Announcement - Patient Oriented Research

Genetic testing that includes using a person's genetic code to diagnose genetic disease has been widely practiced in neonatal intensive care units (NICUs), a place where critically sick babies with genetic diseases are often admitted. Our previous review of 170 papers found multiple gaps in care for parents who have babies in the NICU and parents who have children in the pediatric intensive care units (PICUS), (parents of older children) who need genetic testing. These key points included being mindful of culture and emotional support. Following this, in another study using both numerical (quantitative) and descriptive (qualitative) data, we found additional concerns related to genetic testing that influence the parental experience. The main theme was communication when ordering the tests and when testing results are being given to the families. A tool focusing on measuring parents' empowerment (control over the environment and situation) with genetic testing experience has not been developed. Using our previous findings, we will create a new tool called Parental Genetic Testing Empowerment (PaGE) to eventually be used by clinical services as a part of routine care across Canada.