Funding outcome

Congenital heart disease (CHD) results when the heart, or blood vessels near the heart, do not develop normally before birth. It is the most common type abnormality at birth. It is a long term illness that requires children to have many surgeries and procedures and to undergo many tests throughout their childhood. Living with CHD can effect the child and their caregivers mentally, emotionally, and socially in a negative way. The goal of this research is to decrease these negative outcomes in both children born with CHD and their caregivers. Information on the mental, emotional, and social outcomes for children born with an abnormal heart and their families will be collected and organized together to determine what information is missing about their experiences and where more information is needed. These results will be shared with parents and other caregivers of children born with CHD to determine a more narrow area to focus part two of the study. In part two of the study, parents of children with abnormal hearts will be asked to participate in structured conversations and surveys about their experiences with raising a child with born CHD. School age-children and teenagers born with CHD will also be asked to participate in structured conversations and surveys about their experiences with growing up with an abnormal heart. The important information obtained from these conversations and surveys will be used to develop an easily understandable and usable tool for sharing information with future parents and caregivers of a child with an abnormal heart. The degree to which the information sharing is understandable and useable will be explored in stage three of the study.