Parent Health and Functioning 13 Months After Infant or Child NICU/PICU Death

BACKGROUND: After a child’s death, parents may experience depression, posttraumatic stress disorder (PTSD), and increased risk for cancers, diabetes, psychiatric hospitalization, and suicide. Racial/ethnic differences are unknown. This longitudinal study investigated health and functioning of Hispanic, black, and white parents through 13 months after NICU/PICU death.

METHODS: Parents (176 mothers, 73 fathers) of 188 deceased infants/children were recruited from 4 NICUs, 4 PICUs, and state death certificates 2 to 3 weeks after death. Deaths occurred after limiting treatment/withdrawing life support (57%), unsuccessful resuscitation (32%), or brain death (11%). Data on parent physical health (hospitalizations, chronic illness), mental health (depression, PTSD, alcohol use), and functioning (partner status, employment) were collected in the home at 1, 3, 6, and 13 months after death.

RESULTS: Mean age for mothers was 32 ± 8, fathers 37 ± 9; 79% were Hispanic or black. Thirteen months after infant/child death, 72% of parents remained partnered, 2 mothers had newly diagnosed cancer, alcohol consumption was below problem drinking levels, parents had 98 hospitalizations (29% stress related) and 132 newly diagnosed chronic health conditions, 35% of mothers and 24% of fathers had clinical depression, and 35% of mothers and 30% of fathers had clinical PTSD. At 6 months after infant/child death, 1 mother attempted suicide. Week 1 after infant/child death, 9% of mothers and 32% of fathers returned to employment; 7 parents took no time off. More Hispanic and black mothers than white mothers had moderate/severe depression at 6 months after infant/child death and PTSD at every time point.

CONCLUSIONS: Parents, especially minority mothers, have negative physical and mental health outcomes during the first year after NICU/PICU death.