Voices of the unheard: A qualitative survey exploring bereaved parents experiences of stillbirth stigma

Abstract

Background: Every year, 2.6 million babies are stillborn worldwide. Despite these figures, stillbirth remains a relatively ignored public health issue. The wider literature suggests that this is due to the stigma associated with stillbirth. The stigma of stillbirth is seen as possibly one of the greatest barriers in reducing stagnant stillbirth rates and supporting bereaved parents. However, empirical evidence on the extent, type, and experiences of stillbirth stigma remain scarce.

Aim: This study aimed to explore the stigma experiences of bereaved parents who have endured a stillbirth.

Methods: An online survey of closed and open-questions with 817 participants (n=796 female; n=17 male) was conducted in high-income countries.

Findings: Based on self-perception, 38% of bereaved parents believed they had been stigmatised due to their stillbirth. Thematic data analysis revealed several themes consistent with Link and Phelan's stigma theory- labelling, stereotyping, status loss and discrimination, separation, and power. One more theme outside of this theory- bereaved parents as agents of change was also discovered.

Conclusion: Bereaved parents after stillbirth may experience stigma. Common experiences included feelings of shame, blame, devaluation of motherhood and discrimination. Bereaved parents also reported the silence of stillbirth occurred during their antenatal care with many health care providers not informing them about the possibility of stillbirth. Further research needs to be undertaken to explore further the extent and type of stigma felt by bereaved parents after stillbirth, and how stigma is impacting the health care professional disseminating and distributing resources to pregnant women.

Keywords: Bereavement; Social psychology; Stigma; Stillbirth; Survey.