Bereaved parents' perceptions of the autopsy examination of their child

Abstract

Objective: In this study we explored parental views of their child's autopsy, their experiences with autopsy-related processes, and the impact of the examination on their grief.

Methods: A survey design with a mailed questionnaire was used. The inclusion criteria were that an autopsy had been performed on the child and it was at least 3 months since his or her death. The questionnaire consisted of nonidentifying demographic details about the child, a standardized grief measure (parts A and B of the Texas Revised Inventory of Grief), and 28 questions with response sets and opportunities for comment. Fifty-three parents participated.

Results: Our findings suggest a complexity of perceptions associated with pediatric autopsy examination. A distinction was identified between the informational and altruistic benefits of autopsy and its supportive qualities. Ninety percent of parents valued autopsy as a means of finding out why their child died, and 77% appreciated its contribution to medical knowledge. The general unequivocal helpfulness for bereaved parents commonly ascribed to autopsy examinations was not found. Parents expressed uncertainty about their perceptions of autopsy. Forty-one percent of the parents felt that it helped them live with their loss and 30% found it a comfort, whereas 42% of the parents felt that their child's autopsy examination added to their grief. The results underscore the necessity for open discussion with parents about the realities of what autopsy can offer them.

Conclusions: Our results add to the knowledge about the meaning of autopsy for grieving parents and challenge some current beliefs.