Background and aims Health professionals in the PICU support both child and parents when the death of a child is imminent. The aim of this contribution is to emphasise that parents can suffer from the altered physical appearance of their child (e.g. severe oedema, bruises and cuts) but physical proximity in the final hours can help them cope.
Methods Parents of 24 children who died 4 to 5 years ago in the ICU were invited for a semi-structured interview. Qualitative analysis was applied with Atlas-ti 7.0.
Results Parents of 14 children (response rate 58.3%) participated. The children (aged 2 weeks to 13 years) were admitted in PICU from 2 h up to 7 months.
The importance of the integrity of their child’s physical appearance stood out in their narratives. Parents spoke of the ‘damaged’ body as a result of necessary medical interventions, quote: “It was terrible, after the reanimation his ribs were broken. He was looking black. It was awful, really awful.”
However, getting physically close to the child in the hour of death helped, quote: “We actually crept into bed with her bed, to hold her.” Caring for the body afterwards also helped parents, quote: “After she had died I brushed her teeth like I always did when the kids were smaller. That was so good to do.”
Conclusions End-of-life care asks for awareness that the child’s damaged body deeply affects parents. Yet, being able to stay physically close helps them to be the parent they want to be.