Measuring the silence: development and initial psychometric testing of the Stillbirth-stigma scale

Background: The World Health Organization (WHO), and the Lancet's 2011 and 2016 Stillbirth Series, all released a call to action to reduce stillbirth stigma by 2020. However, there is meagre research regarding the concept of stigma as it relates to those who have experienced a stillbirth. Furthermore, there is currently no tool to measure and define the extent and types of stigma felt by bereaved parents; thus, there is no way to determine if stillbirth stigma is being reduced. Therefore, this study sought to create a stillbirth-stigma scale to measure the extent and type of stigma experienced by bereaved parents to gain a better understanding of its constructs. It is anticipated that this scale can be used as a tool to measure any changes in stillbirth stigma to assess if it is being reduced. Methods: Items for the initial administration of the stillbirth-stigma scale were developed by adapting existing validated stigma scales, gathering information from existing literature, and consulting end-users. Eighty-three potential scale items were piloted on 100 Australian bereaved parents (94 mothers; six fathers) through an online survey. Ethics: This study was approved on 5 December 2016 by the University of South Australia Human Research Ethics Committee, protocol number 0000036017. Results: An exploratory factor analysis identified four factors (perceived devaluation stigma, discrimination, disclosure and selfstigma), with the final structure having good factor structure, internal consistency (a=.77), and reliability (r=.90). Conclusion: The stillbirth-stigma scale has the potential to measure the extent and type of stigma experienced by bereaved parents. Future assessment needs to be conducted to further validate the scale.