Parent and child perceptions of the child's health at 2, 4, 6, and 13 months after sibling intensive care or emergency department death

J Am Assoc Nurse Pract. 2020 May 21;33(10):793-801. doi: 10.1097/JXX.0000000000000429.

Abstract

Background: Approximately 50,000 US infants and children die annually, leaving surviving children and families with long-lasting effects. In most studies, children's health is rated by parents, but not the children.

Purpose: To compare the surviving children's self-rated health with parents' ratings at 2, 4, 6, and 13 months after sibling neonatal intensive care unit/pediatric intensive care unit/emergency department death death and identify the related factors.

Methods: Children and their parents rated the child's health "now," "now compared with others your age," and "now versus before" the sibling's death.

Sample: One hundred thirty-two children (58% girls, 72% school-aged, and 50% Black non-Hispanic), 70 mothers, and 26 fathers from 71 bereaved families.

Conclusions: Children self-rated their health: "now" as lower than their mothers at 4, 6, and 13 months and their fathers at 2, 4, and 13 months; "now compared with others your age" as lower than their mothers at each time point and fathers at 4, 6, and 13 months; and "now versus before" their sibling's death as higher than their mothers at 4, 6, and 13 months and fathers at 6 months. Ratings did not differ by age, gender, or race/ethnicity. At 6 months, children self-rated their health "now" as higher than their fathers in families with one to two surviving children but lower than their fathers in families with three to eight surviving children.

Implications for practice: Parents often perceive their children as healthier than children perceive themselves after sibling death, especially in larger families. Talking with children separately can identify the children at risk for emotional and physical illnesses earlier, providing more timely and appropriate interventions and referrals.