At the request of SON postdoctoral fellow Pat Moreland, Chapel Hill Mayor Mark Kleinschmidt has proclaimed February 7-14 Congenital Heart Defect (CHD) Awareness Week. In communities across our nation, this is a time to increase knowledge about CHD and appreciation of the issues that affected patients and families face.
Congenital heart defects are the most common types of difference from usual anatomy and physiology seen at birth. They come about when the heart or major blood vessels do not form properly and thus the way the baby’s heart works is affected. Each year, more than 40,000 babies in the United States are born with CHD ranging in severity from mild to life-threatening. Medical and surgical treatments for CHD have advanced and infants born with these types of problems are now living well into adulthood. Still, these individuals can have ongoing or new health and psychosocial issues related to their CHD and, in addition to receiving usual primary care, should also see a heart doctor regularly for the rest of their lives. Challenges of CHD such as adherence to the medical regimen and health care visits, and problems with insurance can heighten during adolescence and young adulthood, in part because the health care system lacks structures for transitioning individuals with ongoing childhood health problems from pediatric to adult care.
Dr. Moreland is conducting a research study to better understand the health and psychosocial issues experienced by adolescents and young adults who have been diagnosed as having a CHD. The research is supported by T32 NR007091Interventions to Prevent and Manage Chronic Illness, PI: M, Mishel and an American Nurses Foundation Research Grant. The study website is at: www.youngadulthearts.com
The themes that have been coming up in interviews with the study participants to date include the uncertainty of the future and coping with that uncertainty. Future research is needed to develop and test interventions that aim to support adolescents and young adults who live with CHD.
To recognize CHD Awareness Week, a bake sale will be held on February 9th from 12:00-2:00 pm on the ground floor of Carrington Hall and in front of the BEACH. All proceeds will be donated to the Congenital Heart Information Network. To increase public awareness, CHD information will be displayed in the lobby of UNC Children’s Hospital on February 7th and 14th.