Decisions to consent for autopsy after stillbirth: Aboriginal and Torres Strait Islander women’s experiences

Abstract Background: The stillbirth rate for Australian Aboriginal and Torres Strait Islander infants is twice that for non-Indigenous infants. Autopsy is the gold standard for fetal investigation, however, parental consent is low. There is little research investigating the drivers of parents’ decision-making for autopsy after stillbirth. Aims: The current study explored the reasons why Aboriginal and Torres Strait Islander women did or did not give permission to autopsy after stillbirth. Materials and Methods: Five Aboriginal and/or Torres Strait Islander women participated in semi-structured interviews. Thematic analysis was conducted within a phenomenological framework. Results: Five themes were identified as reasons for giving permission – to find out why baby died; confirm diagnosis; understand future risk; help others; and doubt about maternal causes. Four themes were identified as reasons for declining permission – not asked in a sensitive manner; not enough time to think; distress about the autopsy procedure; and unwilling to agree. There was a lack of acceptability of the lengthy timeframe for the availability of autopsy results as families usually wait between three and nine months. This lengthy waiting period negatively impacted upon families’ health and wellbeing. Conclusions: It is important for health professionals to understand the factors that parents consider when giving permission for autopsy after stillbirth. It is hoped that an increase in autopsy rate will enhance the understanding of the causes of stillbirth and ultimately decrease the stillbirth rate for Aboriginal and Torres Strait Islander families