Parents: Wish I had done, wish I had not done, and coping after child NICU/PICU death

An infant or child death is devastating for parents. This study examined parents' wishes regarding what they had or had not done and how they coped 1-13 months and 2-6 years after the infant's/child's neonatal intensive care unit (NICU)/pediatric intensive care unit (PICU) death.

Qualitative study design using conventional content analysis. Eighty-one mothers and 23 fathers completed open-ended questions regarding what they wished they had or had not done and their coping strategies. Mothers wished most to have spent more time with the child (17%), held the child more (11%), and chosen a different treatment path (9%). Fathers wished most to have spent more time with the child (53%) and monitored the child more closely (12%). Mothers wished they had not taken poor care of themselves (27%) and agreed to the child's surgery/treatment (20%). Fathers wished they had not left the hospital (22%) and agreed to surgery/treatment (16%). Mothers most used coping that included caring for herself (23%) and remembering the child (17%), whereas fathers were caring for self (26%) and moving forward (20%).

Parents wished they had spent more time with their child and had not agreed to the child's surgery/treatments. The most frequent coping technique used by parents was caring for themselves.

Practitioners must provide parents time with their infant/child in the NICU/PICU before and after death and provide information on children's treatments at levels and in languages they understand.