Whether sudden or anticipated, whether parents participate in the decision to withhold or withdraw treatment, death of an infant/child is a traumatic event for parents. All hopes and dreams for the child's future are gone forever. Parents may feel that a part of them has died. Most of the more than 23,000 infant and child deaths in US hospitals in 2000 occurred in a neonatal (NICU) or pediatric (PICU) intensive care unit. The purpose of this study is to describe the experience of parents whose infant/child died in the NICU/PICU and the impact of the death on parent grief, mental health, personal growth, and family functioning during the first year after the death. Families whose infant/child dies in the NICU (n=75) or PICU (n=75) and who understand spoken English or Spanish will be recruited. Other inclusion criteria for families from the NICU are: singleton birth, neonate lived for >4 hours. Other inclusion criteria for families from the PICU are: patient in the PICU for >4 hours, deceased child 18 years old or younger. Exclusion criteria are: injury suspected to be due to child abuse, parent(s) hospitalized concurrently or death of a parent in the illness/injury event. Quantitative data will be collected in the family's home at 1, 3, 6, and 13 months after the death and through review of the infant's/ child's hospital chart. Quantitative data will include age of the infant/child at death, mode of death, parent anticipation of the death, race/ethnicity &acculturation, partner status, presence of surviving children, parent religiosity, social support, parent grief response, parent mental health (depression and post-traumatic stress disorder), parent personal growth, and family functioning (mother-father couple relationship, parent-surviving children] relationship, functioning of the family unit). Qualitative interviews will be conducted at 7 and 13 months after the infant's/child's death with a subset of 30-40 parents chosen to represent a broad picture of the families in the study. ANOVA, multiple regression, and hierarchical linear modeling will be used to explore the effects of characteristics surrounding the infant's/child's death, parent/family factors and social support on parent and family outcomes at each time point and over time. Content analysis of the qualitative data will be used to corroborate and expand the study's conceptual framework. Research in this area is crucial so that health care professionals can identify parents and families at risk for poor outcomes and target them for early intervention to prevent or minimize undesirable effects.
Showing the most recent 10 out of 13 publications
