BACKGROUND
In February 2010, California Heart Connection launched an extensive online survey of parents of children with congenital heart defects (CHD) in the U.S. The survey asked many questions about receiving the diagnosis: what was most helpful and most stressful, what diagnostic tests were performed, what information was received at the time of diagnosis, and many others.
In just a matter of weeks, over 800 responses were received! We believe that this is the largest survey of its kind. Our goal is to share the perspectives of parents with physicians to help them better communicate with parents when giving a diagnosis of CHD. We believe this can greatly improve outcomes for the children and help make receiving the diagnosis a little easier for new parents.
We'd like to thank the many support groups and individuals to who participated by completing the survey and passing on the information to others. It was truly an inspiration to see how willing parents are to tell their stories in the hope that others will have an easier road.
August 2013 - Aritcle published in Pediatric Cardiolog (epub ahead of print)
How Not to Tell Parents About Their Child’s New Diagnosis of Congenital Heart Disease: An Internet Survey of 841 Parents
December 2012 - Article published in Pediatric Cardiology (print version) -
Prenatal diagnosis of hypoplastic left heart syndrome: impact of counseling patterns on parental perceptions and decisions regarding termination of pregnancy
(Results from 138 parents prenatally diagnosed with with HLHS)
November 2012 - Poster Presentation, Abstract
Counseling Following the Diagnosis of Congenital Heart Disease: Impact of the Cardiologist’s Demeanor and Terminology
(Results from 841 parents of children with CHD)
May 2012 - Article published in Pediatric Cardiology (epub ahead of print)
Prenatal diagnosis of hypoplastic left heart syndrome: impact of counseling patterns on parental perceptions and decisions regarding termination of pregnancy
(Results from 138 parents prenatally diagnosed with with HLHS)
February 2011 - Two abstracts presented at a poster presentation at Cardiology 2011 (worldwide conference sponsored by Children's Hospital of Philadelphia in Arizona)
- Perceptions of survival and life expectancy impacted by termination counseling for parents receiving a prenatal diagnosis of Hypoplastic Left Heart Syndrome
- Factors associated with parents’ perceptions when receiving their child’s diagnosis of Hypoplastic Left Heart Syndrome.
January 2011 - Two abstracts (above) published in the World Journal for Pediatric and Congenital Heart Surgery as part of the “Abstracts from Cardiology 2011, 15th Annual Update on Pediatric and Congenital Cardiovascular Disease” 139-192, #F39, #F40.
February 2010 - Internet survey distributed to online support groups.
California Heart Connection is an all volunteer nonprofit organization. If you would like to help us continue these types of projects, feel free to donate to our organization. Thank you for your interest in our projects, and for helping us support children and adults with CHD.
