Background
Research on sibling death in a pediatric/neonatal intensive care unit is limited, despite many qualitative differences from deaths at home or in hospitals’ general care areas and has overlooked cultural differences.
Objectives
To describe parents’ reports of children’s responses to a sibling’s death in a neonatal or pediatric intensive care unit via qualitative interviews at 7 months after the death.
Methods
English-speaking (n = 19) and Spanish-speaking (n = 8) parents of 24 deceased infants/children described responses of their 44 surviving children: 10 preschool, 19 school-age, and 15 adolescent. Parents’ race/ethnicity was 48% black, 37% Hispanic, 15% white. Ten siblings died in the neonatal unit and 14 in the pediatric intensive care unit. Semistructured interviews in parents’ homes were audio recorded, transcribed verbatim, and analyzed with content analysis.
Results
Six themes about surviving children emerged. Changed behaviors were reported by parents of school-age children and adolescents. Not understand what was going on was reported primarily by parents of preschoolers. Numbers of comments in the 4 remaining themes are as follows: maintaining a connection (n = 9), not having enough time with their siblings before death and/or to say goodbye (n = 6), believing the sibling is in a good place (n = 6), not believing the sibling would die (n = 4). Comments about girls and boys were similar. White parents made few comments about their children compared with black and Hispanic parents. The pattern of comments differed by whether the sibling died in the neonatal or the pediatric intensive care unit.
Conclusions
Children’s responses following a sibling’s death vary with the child’s sex, parents’ race/ethnicity, and the unit where the sibling died. Children, regardless of age, recognized their parents’ grief and tried to comfort them.
The Process and Impact of Stakeholder Engagement in Developing a Pediatric Intensive Care Unit Communication and Decision-Making Intervention
