Parents’ experiences of transition from hospital to home after their infant’s first stage cardiac surgery: psychological, physical, physiological and financial survival

Background: The inter-surgical stage is a critical time for fragile infants with complex congenital heart disease (CHD) but little is known about the impact on parents.
Objective: To explore parents’ experiences of the transition from hospital to home with their infant, following stage one cardiac surgery for complex CHD.
Method: A prospective longitudinal mixed methods feasibility study using semi-structured interviews and self-report instruments at four timepoints: before discharge (baseline), 2 weeks post discharge, 8 weeks post discharge and after stage two surgery. Qualitative data were analysed thematically and quantitative data descriptively,
Results: Sixteen parents of 12 infants participated. All parents described signs of acute stress disorder; four parents described symptoms of post-traumatic stress disorder before discharge. Parents’ fear and uncertainty about going home was multi-faceted, underpinned by exposure to numerous traumatic events. By 8 weeks post-discharge, parents’ feelings and emotions were positive, relieved and relaxed. Mean generalised anxiety and depression scores were higher before discharge; most individual anxiety and depression scores decreased over time. Physiological survival included self- care needs, eating and sleeping properly. Physical survival included preparation of the home environment and home alterations adapting to their infant’s equipment needs. Financial survival was a burden, particularly for those unable to return to work.
Conclusion: Patterns of experience in surviving the transition included psychological, physical, physiological and financial factors. Further longitudinal research could test the effectiveness of psychological preparation interventions, whilst encouraging early consideration of the other factors influencing parents’ care of their infant following discharge from hospital.