Parents’ Acute Illnesses, Hospitalizations, and Medication Changes During the Difficult First Year After Infant or Child NICU/PICU Death

Abstract

Background and Objectives Infant/child death is described as a most stressful life event; however, there are few reports of effects on parent physical health during the first year after the death. The study’s purpose is to examine the patterns of parent acute illnesses, hospitalizations, and medication changes over 1 to 13 months after neonatal intensive care unit (NICU) or pediatric intensive care unit (PICU) infant/child death in 3 racial/ethnic groups. Methods Secondary analyses were conducted with longitudinal data on parent health and functioning 1 to 13 months after infant/child NICU/PICU death. Parents (176 mothers, 73 fathers; 44% Hispanic, 35% black non-Hispanic, and 21% white non-Hispanic) of deceased infants/children were recruited from 4 children’s hospitals and state death records. Inclusion criteria—parents understood English or Spanish and had a deceased neonate/child ≤ 18. Exclusion criteria—deceased newborn from multiple gestation pregnancy, child in foster care, child’s injury due to suspected abuse, or parent death in illness/injury event. Parents reported numbers and types of acute illnesses, hospitalizations, and medication changes 1 to 13 months postdeath. Results Parents’ acute illnesses, hospitalizations, and medication changes were greatest between months 1 and 6, with relative quiescence in months 7 to 10, and an increase in months 11 to 13. Mothers (aged 32 ± 7.8 years) reported 300 acute illnesses (primarily colds/flu, headaches, anxiety/depression, and infections) and 89 hospitalizations (primarily infections, chest pain, and gastrointestinal problems). Fathers (aged 37 ±8.8 years) reported 104 acute illnesses (colds/flu and headaches) and 9 hospitalizations. Conclusion After infant/child NICU/PICU death, mothers had greater morbidity than fathers, with no significant differences by race/ethnicity. Parents’ health needs to be monitored in months 1 to 6 and months 11 to 13, and interventions targeted to parents in these months.

Comparison of mothers and grandmothers physical and mental health and functioning within 6 months after child NICU/PICU death

“…Perhaps grandmothers’ acute illnesses after the death were attributed to or masked by their greater number of pre-existing chronic health conditions. With larger samples over the first 6 months post infant/child NICU/PICU death, researchers have reported 302 and 59 acute illnesses, 108 and 75 pre-existing chronic health conditions, 108 and 20 newly-diagnosed chronic conditions, 59 and 19 medication changes, and 59 and 7 hospitalizations for 176 mothers and 99 grandmothers, respectively [ 7 – 9 ]. Mothers’ and grandmothers’ self-ratings of their health were about the same, with means toward the healthier end of the scale.…”

“…Scores on personal growth were low (possible range 12–60) in this sample of mothers and grandmothers, perhaps because of the short time between the child’s/grandchild’s death and the time of interview. The first 6 months after a child’s/grandchild’s death is a period of many health challenges for both mothers and grandmothers [ 7 – 9 ].…”

“…In a longitudinal study of relatively young US parents (176 mothers, 73 fathers) (76%, ages 18–40) during the first 13 months after an infant’s/child’s NICU/PICU death [ 8 ], the total number of mothers’ chronic health conditions ( n = 183) more than doubled. Mothers reported 89 hospitalizations, 300 separate episodes of acute illnesses, and 76 medication changes to manage their chronic conditions; most (61%, 76%, and 67%, respectively) occurred in the first 6 months after the child’s death [ 9 ]. The proportion of mothers with depression, PTSD, or both decreased from 61 to 71% at 1 month to 25–35% at 13 months.…”

Surviving Siblings’ Illnesses, Treatments/Health Services over 13 Months after a Sibling’s Death

“…Mothers reported 300 acute illnesses (primarily colds/flu, headaches, anxiety/depression, infections), and 89 hospitalizations. Fathers’ morbidity followed a similar pattern but with less frequency: 104 acute illnesses and 9 hospitalizations (Brooten et al 2018). …”

A Systematic Literature Review of the Current State of Knowledge Related to Interventions for Bereaved Parents

“…Following a child's death, the first 6 months are physically the most difficult for bereaved parents; they experience increased acute illnesses, hospitalizations, and medication changes. 10 Bereaved parents are prone to illnesses and related health concerns; 25% of the bereaved parents reported new diagnoses of illnesses including prediabetes, anxiety, and sleep disorder. 11 Bereaved parents also experience psychological distress such as anxiety, post-traumatic stress disorder, and grief-related depressive symptoms that continue to be significant for years after a child's death.…”