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Keywords

Bereavement, child death, coping, death, infant death, parenting

 

Authors

  1. Brooten, Dorothy PhD, FAAN (Professor)
  2. Youngblut, JoAnne M. PhD, FAAN (Professor)
  3. Caicedo, Carmen PhD (Assistant Professor)
  4. Dankanich, Julia BS (Research Assistant)

ABSTRACT

Background and purpose: An infant or child death is devastating for parents. This study examined parents' wishes regarding what they had or had not done and how they coped 1-13 months and 2-6 years after the infant's/child's neonatal intensive care unit (NICU)/pediatric intensive care unit (PICU) death.

 

Methods: Qualitative study design using conventional content analysis. Eighty-one mothers and 23 fathers completed open-ended questions regarding what they wished they had or had not done and their coping strategies. Mothers wished most to have spent more time with the child (17%), held the child more (11%), and chosen a different treatment path (9%). Fathers wished most to have spent more time with the child (53%) and monitored the child more closely (12%). Mothers wished they had not taken poor care of themselves (27%) and agreed to the child's surgery/treatment (20%). Fathers wished they had not left the hospital (22%) and agreed to surgery/treatment (16%). Mothers most used coping that included caring for herself (23%) and remembering the child (17%), whereas fathers were caring for self (26%) and moving forward (20%).

 

Conclusions: Parents wished they had spent more time with their child and had not agreed to the child's surgery/treatments. The most frequent coping technique used by parents was caring for themselves.

 

Implications for practice: Practitioners must provide parents time with their infant/child in the NICU/PICU before and after death and provide information on children's treatments at levels and in languages they understand.