Experiences of parents and caregivers in pediatric intensive care units: A qualitative study

International audienceBACKGROUND: In pediatric intensive care units (PICUs), parents and healthcare professionals attend to children who verbally and non-verbally express their pain and suffering, fears, anxieties, desires, and wishes in complex intensive care situations. What can we learn from these experiences to improve the way we can take care of and support children? OBJECTIVES: The main objective of this clinical ethics study was to focus on the experience stories of parents during their child’s hospitalization in a PICU, to analyze their discourse, and to propose an ethical perspective. METHOD: The current research collects the experience reports of parents during their child’s hospitalization in a PICU and those of the caregivers who treated them. A total of 17 semi-directive interviews were conducted in the PICU of the Nantes University Hospital from November 2017 to June 2019. Each interview lasted around 1 h. The main results of our study are analyzed and informed by the four ethical principles of T. Beauchamp and J. Childress: autonomy, beneficence, non-maleficence, and justice. RESULTS: The interviews highlighted the difficulties encountered by parents during the hospitalization of their children, such as the distance between their home and the hospital, the technicality of PICU environment, and the difficulty in finding their place as parents. For medical and paramedical teams, their main concerns are undoubtedly to improve the coherence and continuity of their stand toward parents, to promote parental autonomy, and to remain fully aware of the profound existential changes that the child’s illness brings about for parents: It is the caregivers’ duty to take this into account and to respect the parents’ rhythm as much as possible. CONCLUSIONS: The main disagreements between healthcare teams and parents, where they exist, are communication problems that are easily controlled, for the most part, by caregivers