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 et al 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 2013-2015. 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 centred.
Conclusions: Transition from hospital to home was complex and multi-faceted, with unanticipated physical and emotional transitions superimposed upon those that were expected.