Breaking the silence: Determining Prevalence and Understanding Stillbirth Stigma.

BACKGROUND: The 2011 and 2016 Stillbirth Lancet series made a call to action to identify mechanisms to reduce stillbirth stigma. This research answers that call, investigating the extent and dimensions of stillbirth stigma experienced by an international sample of mothers bereaved by stillbirth. OBJECTIVE: To determine the prevalence and type as well as explore explanatory variables associated with higher levels of stillbirth stigma with bereaved mothers in high-income countries (Australia, United Kingdom, The United States of America and New Zealand). METHOD: An international survey of 889 bereaved mothers was conducted utilising the recently developed Stillbirth Stigma Scale to explore the extent and types of stigma experienced, as well as the association between stigma and self-esteem (Rosenberg Self- Esteem Scales), perinatal grief (Perinatal Grief Scale), and perceived social support (Perceived Social Support Scale). Demographic information (e.g. age, education, stillbirth history, sexual orientation and mental health) were collected to determine the association between individual demographic factors and stillbirth stigma. RESULTS: Results of the Stillbirth Stigma Scale indicated that a majority (54%) of bereaved mothers experienced stigma. Self-stigma was the predominant type of stigma experienced (80%), followed by perceived devaluation (64.9%). Bereaved mothers also experienced discrimination (29.1%) and issues with disclosing their stillbirth to their community (36.7%). Stillbirth stigma scores were higher in bereaved mothers who had experienced the loss of their first child. High scores were associated with the mother's mental health status (diagnoses prior to stillbirth, and/or after stillbirth (p<.05)).The other scales used indicated that higher stillbirth stigma scores were also associated with lower self-esteem (r (877) =-.304, p<.001), lower perceived social support (r (871) =-.448, p<.001) and higher levels of grief (r (829) =.609, p<.001). CONCLUSION: The current research was the first to identify that 54% of bereaved mothers experienced stigma, with self-stigma being the most prominent. Bereaved mothers endured discriminating experiences and had trouble disclosing their stillbirth to others within their community. The first-time mother with a self- reported history of mental illnesses appears to be the most at-risk of higher levels of stigma. Future longitudinal research needs to be conducted to determine the direction of the explanatory variables i.e. mental health, self-esteem and social support and develop interventions, which support the bereaved mother and reduce stillbirth stigma. RELEVANCE: This study is the first to demonstrate the prevalence, extent, type and explanatory variables of stigma reported by bereaved mothers and the association between this and poorer outcomes including increased grief and decreased self-esteem. This study begins a dialogue about prevalence and explanatory variables of stillbirth stigma and its impact, to inform future prevention and support potential stigma reduction programs for community and bereaved mothers.

stillbirth prevention: Raising public awareness of stillbirth in Australia.

Prevention of stillbirth remains one of the greatest challenges in modern maternity care. Despite this, public awareness is low and silence is common within families, the community and even healthcare professionals. Australian families and parent advocacy groups given a voice through the Senate Enquiry have made passionate and articulate calls for a national stillbirth awareness campaign. This fourth paper in the Stillbirth in Australia series outlines why stillbirth needs a national public awareness campaign; and provides an overview of good practice in the design, development and evaluation of public awareness campaigns. The cognitive and affective steps required to move from campaign awareness to action and eventually to stillbirth prevention are described. Using these best practice principles, learning from previous campaigns combined with close collaboration with aligned agencies and initiatives should assist a National Stillbirth Prevention Campaign to increase community awareness of stillbirth, help break the silence and contribute to stillbirth prevention across Australia.

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

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.

'InUTERO': The effectiveness of an educational half day stillbirth awareness workshop for maternity care providers.

BACKGROUND: There is a disconnect between what maternity care providers consider should be done and what they actually do with respect to talking with their pregnant clients about reducing their risk of stillbirth. This suggests that they would benefit from receiving up-to-date knowledge about stillbirth, alongside education that provides them with strategies for talking about stillbirth with pregnant women. OBJECTIVES: To gain an understanding of maternity care provider (obstetricians and midwives) knowledge of stillbirth and determine whether delivering a half day workshop improves knowledge and results in intention to change practice. DESIGN: A pre-post intervention study. SETTING: Maternity care providers (Obstetricians, Midwives) working in the northern areas of Tasmania, Australia were asked, via questionnaire, about their knowledge of stillbirth both before and after attending a half-day workshop. PARTICIPANTS: Maternity care providers (n = 51) attended the workshop and 30 (59%) completed both the pre-workshop and post-workshop surveys. METHODS: A four hour interactive workshop grounded in understanding the stillbirth experience. Participants were given up-to-date information about stillbirth risks and current prevention research as well as provided with an actionable step wise approach to talking about stillbirth prevention in pregnancy. RESULTS: Stillbirth knowledge scores (total of 8-points) significantly increased following the workshop (pre: mean = 2.9 ± 1.5; post: mean = 4.7 ± 1.4 points, t 29 = 7.9, <0.001). Before the workshop, only 20% of participants responded that they "always" or usually" discussed the possibility stillbirth occurring with pregnant women in their care whereas, after the workshop, nearly all (88%) indicated that they planned to "always" discuss stillbirth with their pregnant clients. CONCLUSIONS: Attending a stillbirth awareness for prevention education workshop resulted in significant knowledge improvement and self-reported intention to change practice in a group of Australian maternity care providers. While these results are promising, further study is needed to determine the presence and extent of actual practice change following such education.