Traversing the Boundaries and Borders of Discharge from Hospital Following First Stage Surgery for Complex Congenital Heart Disease: the Parents’ Experience

Abstract

Aim: To explore parents’ experiences of the transition from hospital to home with their infant following first stage cardiac surgery for a univentricular heart or systemic shunt dependent cardiac lesion. Background: The process of monitoring a fragile infant at home in between stage 1 and 2 of cardiac surgery, takes the philosophical perspective of holistic care beyond the borders and boundaries normally expected of parents going home for the first time with their new baby. This neo-transition of becoming a medical parent is superimposed upon the multiple transitions already experienced whilst in hospital. Methods: A mixed methods feasibility study. Parents were recruited between August 2013 and February 2015. Parents of 80 infants were eligible; mothers (n=13) & fathers (n=4) of 13 infants consented to participate. Data was collected at four time points (before discharge; 2 weeks after; 8 weeks after; after stage 2 surgery) using self-report tools, semi-structured interviews and daily diaries. Qualitative findings regarding the borders & boundaries of going home are presented here. Results: Numerous physical, emotional & social boundaries & borders were evident during the transition from hospital to home. Traversing the physical boundary of leaving the hospital for the first time with their infant, was loaded with emotionally traumatic experiences that could not be separated from the specific physical transition of going home. For a while parents were in an uncertain place (betwixt and between) where they could not visualise what was ahead & how it would feel; this created anxiety & fear, at the same time as excitement to be going home. Conclusion Liminality as a concept emerged during transition from hospital to home; a crossing point from a comfort zone, safety and security (the ward) into the unknown uncertain place (home). Adjusting to the situation; developing confidence; becoming comfortable with new skills was a threshold concept to mastery of a new normal