Background and aims Admission of a child to a paediatric intensive care unit (PICU) is a very stressful event for the child, but also for the parents. This might not only lead to suffering during admission, but also might have lasting effects. Little is known about the long term effects. In a previous study done during the stay of a child in a PICU we saw that a child’s admission to a PICU causes suffering of parents. In this study we evaluated if there are still feelings of suffering in parents four years after PICU admission.
Methods A structured audio taped interview with 15 parents of children four years after admission of the child to a 20 bed level III PICU of a university teaching hospital to assess whether parents still have feelings of suffering and to identify aspects of suffering.
Results Four years after PICU admission about 50% of the parents indicated that they still have feelings of suffering. Parents of 6 children didn’t suffer themselves. Parents describe mainly physical and psychosocial causes for the suffering. Reasons for suffering are experiencing changes in the physical and mental situation of the child. Also, the uncertainty of the future, effects on the family and problems in the organisation of healthcare contribute to the suffering.
Conclusions A child’s admission to a PICU causes long term suffering in the parents. Caregivers in paediatrics need to be aware of these phenomena and should give attention to these aspects in the follow up support.