Purpose: An investigation of the experiences of parents grieving the traumatic death of their child, the initiatives that helped, and common parental concerns that would benefit from improved education.
Methods: From January 1, 1995, to December 31, 1998, 81 of 3,501 children admitted to our pediatric trauma center died. An attempt was made to enroll all parents. Interactions included family contact at hospital, home/funeral home visit within 1 month of death, educational meeting with parents and 15 supporters at a restaurant within 2 months of death, follow-up survey to parents/supporters, and final interview/survey with parents in 1999-2000.
Results: Seventy-seven families were enrolled; 59 families completed the educational meeting with supporters, and 245 parental supporters returned surveys. Supporters were likely to use proposed interventions (82%), were more accepting of the duration of grief (94%), and interacted with parents more often after the death (78%). Parents (n = 44) felt the hospital staff was appropriately sensitive to their child (90%), themselves (93%) and prepared them for their child's death (81%). Parents (n = 54) on behalf of 37 children have completed the final interview. Poor conceptualization of aspects of the medical care and brain death, and delayed regret for missing the opportunity to donate organs, were recurring themes.
Conclusion: We conclude that parents' unanswered questions or misconceptions regarding brain death, organ donation, and their child's medical care adversely affect their grief; that "normal life" for parents is challenged as they struggle to establish a new sense of normal; and that hospital and trauma service personnel can positively impact the grieving process with appropriate training.