The purpose of this study was to gain an understanding of how our parent's perspective regarding the education and monitoring received before and during the time of participation in our single ventricle inter-stage program.  The primary goals of this project were to understand the parent's perception as well to identify areas for improvement to continue to provide evidence based and patient centric care to this fragile infant population.

A ten question survey was developed utilizing survey monkey which was then emailed to the 20 patients that we had during 2019-2021.  Of the 20 families surveyed, 11 families responded to this survey.  From this information, the two areas for focused quality improvement are, comfort level with NG tube placement and utilization as well as preparing infant formula at home (for those that had to fortify the formula).

Our unit implemented a cardiac discharge education team that is made up of nursing staff that is knowledgeable and comfortable with this complex patient population.  This team serves as an extra layer of experienced providers to help educate and empower families to feel safe and prepared at discharge.  As a result of this survey our discharge education team has been able to provide our patients that need NG teaching a more focused based education regarding NG care, placement and utilization.  Additionally, our dietician will supplement our education team with the patient's specific formula recipes and focused education close to the discharge day so that the families will have time to ask questions before going home.  Feedback from our parents regarding the inter-stage clinic itself was all positive.  The families felt that the clinic experience was very good and really appreciated the care that all our providers give in helping the families care for their fragile infant at home.