IHH is sponsoring the following study currently being done at Primary Children's Medical Center.
Impact on Family and Caregiver Strain in Patients with Single Ventricle Physiology and Transposition of the Great Arteries: A Cross-sectional and Retrospective Study
Children born with serious heart disease often require multiple surgeries, prolonged hospitalizations, and multiple outpatient care visits which can lead to increased patient and parental stress. Among children born with heart disease, those with single ventricle heart disease who undergo at least three separate surgeries early in childhood, may be at the highest risk for post-traumatic stress disorder, family stress and strain. In this research project, we would like to evaluate the impact of having specific forms of congenital heart disease on family and/or caregiver stain and stress. This study will include a short series of survey questions assessing how families perceive strain and stress and how this impacts family life. Thanks to generous funding from Intermountain Healing Hearts, we will be able to provide some compensation to the study participants. If you have a child with transposition of the great arteries who has undergone the arterial switch procedure (ASO) or a child with single ventricle heart disease (aka hypoplastic left heart syndrome, pulmonary atresia with intact septum, tricuspid atresia, heterotaxy syndrome, etc.) who has undergone stage palliation including stage I Norwood/Sano or BT shunt, Stage II bidirectional Glenn, or Stage III Fontan and would like to participate in this short survey, please feel free to give us a call at 801-587-9153.