Background and aims In a previous study on suffering of children during admission to a paediatric intensive care unit (PICU), we found that parents described suffering of their child mainly in relation to physical symptoms. In this study we evaluated if these children still have signs of suffering four years after the PICU admission and if the symptoms of suffering, as perceived by the parents, are different compared to the PICU period.

Methods A structured audio taped interview with 15 parents of children four years after admission to a 20 bed level III PICU of a university teaching hospital to assess whether their child perceived to suffer and to identify perceived aspects of suffering.

Results About 50% of the parents experienced 4 years after PICU admission suffering in their child. Parents of 8 children did not perceive suffering in their child. Parents indicated that the suffering during the PICU admission was due to physical and psychosocial factors. Psychosocial factors were related to the disease causing the admission to the PICU, the treatment and the hospital stay. Four years later the signs of suffering are related to communication, physical and mental retardation and being different from mates.

Conclusions A child’s admission to a PICU and its suffering not only cause suffering in the child during admission, but often suffering is still present four years after admission. Caregivers in paediatrics need to be aware of these perceived symptoms. In long-term follow up of critically ill children this phenomena needs attention.