The intersurgical stage is a critical time for fragile infants with complex congenital heart disease, but little is known about the impact on parents.
The aim of this study was to explore parents’ experiences of the transition from hospital to home with their infant after stage 1 cardiac surgery for complex congenital heart disease.
This is a prospective, longitudinal, mixed methods feasibility study using semistructured interviews and self-report instruments at 4 time points: before discharge (baseline), 2 weeks post discharge, 8 weeks post discharge, and after stage 2 surgery. Qualitative data were analyzed thematically; and quantitative data, descriptively.
Sixteen parents of 12 infants participated. All parents described signs of acute stress disorder; 4 parents described symptoms of posttraumatic stress disorder before discharge. Parents’ fear and uncertainty about going home were multifaceted, underpinned by exposure to numerous traumatic events. By 8 weeks post discharge, parents’ feelings and emotions were positive, relieved, and relaxed. Mean generalized anxiety and depression scores were higher before discharge; most individual anxiety and depression scores decreased over time. Physiological survival included self-care needs, such as 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.
Patterns of experience in surviving the transition included psychological, physical, physiological, and financial factors. Authors of further longitudinal research could test the effectiveness of psychological preparation interventions, while encouraging early consideration of the other factors influencing parents’ care of their infant after discharge from hospital.