Patterns of Transition Experience for Parents Going Home from Hospital with their Infant after First Stage Surgery for Complex Congenital Heart Disease

Purpose: The purpose of this study was to explore parents' experiences of one specific timepoint in their infant's journey: the transition from hospital to home, following the first stage of their infant's cardiac surgery for complex congenital heart disease. Design and Methods: A prospective longitudinal mixed methods study, underpinned with Middle Range Transition Theory (Meleis, Sawyer, Im, Hilfinger Messias, & Schumacher, 2000). Face to face and telephone interviews were conducted and self-report forms completed by parents at four-time points: before discharge (T0), 2 weeks after discharge (T1), 8 weeks after discharge (T2) and after stage two surgery (T3). Interviews were transcribed verbatim before inductive thematic analysis. Results: Parents were recruited over a 15-month period from 2013 to 2015. Twelve mothers and 4 fathers took part. The infants had functionally univentricular heart (left n = 10, right n = 1) and a systemic shunt dependent lesion, tetralogy of Fallot (n = 1). Dynamic constructivist and constructionist social processes occurred for all parents, involving physical, physiological, psychological and cognitive elements within four `patterns of experience', two of which 'safety and security' and 'love and support' are presented in this paper. Implications: Parental support is essential; parents need to be engaged in discharge planning process and given the opportunity to express their needs to ensure that discharge care is truly patient and family centered. Conclusions: Transition from hospital to home was complex and multi-faceted, with unanticipated physical and emotional transitions superimposed upon those that were expected. (C) 2017 Elsevier Inc. All rights reserved.