Findings from ACHA’s Parental Knowledge Study were published this week in the online version of Pediatrics, the official journal of the American Academy of Pediatrics. Click here for the abstract of the article, "Parental Knowledge Regarding Lifelong Congenital Cardiac Care."
The goal of the Parental Knowledge Study was to learn how to better educate parents and guardians about the need for children with congenital heart defects to maintain lifelong congenital cardiac care (LLCCC). The study concluded that a substantial number of parents of children with moderate and complex CHD lack knowledge about LLCCC, but almost all of them have a desire to learn more about the care their child will need as an adult. Results were first presented at the at the 2010 American College of Cardiology Scientific Sessions (for more information, click here).
“We are thrilled that the results of the Parental Knowledge Study have been published in Pediatrics,” says ACHA President/CEO and study co-author Amy Verstappen. “This groundbreaking information on how parents see their child’s lifelong CHD care needs confirms ACHA’s message of the importance of congenital heart patients getting the information they need to thrive throughout their lifespan”
The project was a partnership between ACHA and the Adult Congenital Cardiac Care Associates (ACCCA), an organization that brings together ACHD nurses, PAs, MSWs, and psychologists to execute congenital heart research.