The lived experiences of the parents of children admitted to a paediatric cardiac intensive care unit

Background: Congenital heart disease is a common birth defect rather than a paediatric disease. Parents often discover this disease after their children's birth and then often learn that cardiac surgery is the only solution. A child's admission to a paediatric cardiac intensive care unit (PCICU) may lead to high levels of stress, anxiety and depression in parents. Objectives: To describe the lived experiences of mothers and fathers during their children's confinement in a PCICU. Methods: A phenomenological study was conducted. This method combines descriptive features (Husserlian) and interpretive phenomenology (Gadamerian). The subjects were interviewed with open questions to allow them full freedom of expression and were asked to describe their experiences when their children were admitted to the PCICU. Each interview was audio-recorded and lasted between 20 and 60 minutes. The researchers involved in the analysis each independently immersed themselves in the data by reading and re-reading the transcripts in order to gain a sense of the whole dataset. The extrapolation of the themes followed. The individual researchers compared the various extrapolated themes. Results: We enrolled 16 participants. Three main themes emerged: 1) the fear of the potential loss of their children, (2) the feeling of having lost their roles as parents and (3) the desire to receive more information and be an active part of the treatment process. Conclusion: A child's admission to a PCICU requires healthcare staff to take care of the child's family members as well. Knowing about mothers’ and fathers’ experiences is crucial in implementing a holistic and multidisciplinary process of care.