Parents' Wishes for What They Had or Had Not Done and Their Coping After Their Infant's or Child's Neonatal Intensive Care Unit/Pediatric Intensive Care Unit/Emergency Department Death.

This qualitative study asked 70 mothers and 26 fathers 3 open-ended questions on what they wish they had and had not done and on coping 2, 4, 6, and 13 months after their infant's/child's neonatal intensive care unit/pediatric intensive care unit/emergency department death. Mothers wished they spent more time with the child, chosen different treatments, advocated for care changes, and allowed the child his or her wishes. Fathers wished they had spent more time with the child and gotten care earlier. Mothers wished they had not agreed to child's surgery/treatment, taken her own actions (self-blame), and left the hospital before the death. Fathers wished they had not been so hard on the child, agreed with doctors/treatment, and taken own actions (self-blame). Religious activities, caring for herself, and talking about/with the deceased child were the most frequent mothers' coping strategies; those of the fathers were caring for self and religious activities. Both mothers and fathers wished they had spent more time with their child and had not agreed to surgery/treatments. The most frequent coping was caring for themselves, likely to care for the family and retain employment. Nurses must be sensitive to parents' need for time with their infant/child before and after death and to receive information on child's treatments at levels and in languages they understand.

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

BACKGROUND AND PURPOSE: 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. METHODS: 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%). CONCLUSIONS: 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. IMPLICATIONS FOR PRACTICE: 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.