Bereaved parents’ experiences of being informed about autopsy findings after the sudden and unexpected loss of an infant or small child

Abstract Background: Following the sudden and unexpected loss of an infant or small child, the police usually request a forensic autopsy. National guidelines exist for how the autopsy report should be made available for the bereaved parents, but there is limited knowledge whether the guidelines are followed. This study aims to explore bereaved parents’ experiences of being informed about autopsy findings. Methodology: As part of in-depth follow-up interviews at 13 months post-loss, 24 couples were asked how they experienced being informed about autopsy findings. Participants’ responses underwent thematic analysis. Results: The results show that the waiting period before the autopsy report was made available was a burden for many parents, particularly those who experienced a delay in the process. Two main themes related to parents’ experiences of being informed when the report was available: ‘informed in a supportive and caring way’ and ‘difficult or negative experiences’. Conclusion: Several factors are described that help parents cope with being informed about autopsy findings, such as: being informed according to the given timeframe by competent health personnel, face-to-face meetings at the hospital, being able to ask questions and routine follow-up contact. These factors are mostly described in the national guidelines. This study shows that when guidelines were followed, the majority of parents were satisfied with how they were informed. Unfortunately, some parents had negative experiences. Regular training and continuing education for health personnel are recommended.