Grant: Doctoral Research Award - Priority Announcement: Patient Oriented Research (POR)

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 of abnormality present at birth. It is a long term illness that requires children to have several surgeries and/or procedures and to undergo many tests throughout their childhood. Living with CHD can effect the child and their primary caregivers mentally, emotionally, and socially in a negative way. The goal of this research is to decrease these negative outcomes in children and adolescents born with CHD and their primary caregivers. In part one of this study, research conducted on the mental, emotional, and social outcomes for children and adolescents 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. Information on strategies to improve these outcomes for these children and their families will also be collected. These results will be shared with parents and other caregivers of children born with CHD to determine a more narrow priority area to focus part two of the study. In part two of the study, parents of children and adolescents with abnormal hearts will be asked to participate in structured conversations and surveys about their experiences with raising a child born with 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 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.