Stillbirth taboo: start by saying the word

A CRUCIAL step in tackling preventable stillbirth may be for clinicians to say the word, preferably in a language native to the mother and in a culturally appropriate way.

Professor David Ellwood, Professor of Obstetrics and Gynaecology at Griffith University and Co-Director of the Stillbirth Centre for Research Excellence (Stillbirth CRE), said health professionals were still reluctant to use the word “stillbirth” when talking to patients.

“When clinicians are saying to patients ‘perhaps it’s time for your pregnancy to be over’, they don’t continue the conversation by saying ‘because I am concerned that your baby might die if we leave things for another week’,” he said.

“[Stillbirth] is taboo, it’s confronting, and we are not good at getting across concepts of risk when it’s a very infrequent occurrence. Stillbirth is a very infrequent occurrence, but it’s devastating.”

Professor Ellwood was commenting on a Perspective published in the MJA that highlights the relatively higher rates of preventable stillbirths among women from migrant and refugee backgrounds in Australia.

Associate Professor Jane Yelland, Senior Research Fellow at the Intergenerational Health Research Group at the Murdoch Children’s Research Institute, and colleagues, wrote in the MJA that there were marked socio-economic disparities in stillbirth rates in Australia and other high income countries.

“Aboriginal and Torres Strait Islander people and people from some low and middle income countries, particularly those coming as humanitarian entrants to Australia, are among the most likely to experience stillbirth,” the authors wrote.

“Public health attention to this devastating but low visibility issue is long overdue.”

The Perspectiv comes after WA research, published in the MJA in 2018, found that immigrants of African or Indian background appeared to be at greater risk of ante- or intrapartum stillbirth in that state.

The reasons for these disparities were multifactorial, the MJA Perspective authors wrote. They noted that there was emerging evidence that difference in gestational length and fetal growth restriction may explain a proportion of stillbirths in women of South Asian background. Also, they wrote, barriers to access and engagement with antenatal care, limited health literacy as well as complex social determinants of health, and the cumulative impact of stressful life events and social disadvantage are likely to contribute to this excess risk.

The authors called for engagement from both migrant communities and health professionals in designing health care reform to end preventable stillbirth.

Professor Ellwood welcomed the “excellent” article and said it was important to address the particular challenges for women from migrant and refugee backgrounds.

“People find this to be a challenging issue when they are talking in their own language, but you can imagine that it’s even more challenging when they are talking through an interpreter or talking to someone where English is not their first language,” he said.

“Getting the message across in a culturally appropriate way is absolutely essential and as is ensuring that people actually understand.”

Associate Professor Jane Warland, from the University of South Australia’s School of Nursing and Midwifery, said it was high time that we tackled the taboos around discussing stillbirth.

“Taboos exist around discussing stillbirth risk with all women not only those from culturally and linguistically diverse (CALD) backgrounds. As the [MJA] authors point out, it is particularly challenging to discuss risks with women of CALD backgrounds and this is especially true if the maternity care provider is not in the habit of discussing risk with pregnant women in general,” she said.

In an exclusive InSight+ podcast, Associate Professor Yelland said although stillbirth was a rare event, it was important to remember that around 2000 babies were stillborn each year in Australia.

“That’s a tragedy for families, a tragedy for health care providers and the stillbirth rate hasn’t changed over many years in Australia, despite a very good health system here,” she said.

“There are ... major challenges for migrant women of non-English speaking background navigating Australian health care, and that has been recognised for decades. Unfortunately, there is no evidence of improvement in migrant women’s experience of antenatal care in population-based surveys undertaken in Victoria and SA.”

Professor Vicki Flenady, also a co-director of the Stillbirth CRE, said system reform and continuity of care were critical in tackling preventable stillbirth in refugee and migrant populations.

“As the [MJA authors] point out, we need system change,” Professor Flenady said. “We need to look at how we deliver antenatal care to make sure that women want to come.”

She said providing culturally safe antenatal environments and continuity of care – where women of culturally and linguistically diverse backgrounds could build trust and rapport with health care professionals – was critical in breaking down the barriers to care.

Professor Flenady said for many years the Stillbirth CRE has been translating its resources into various languages. For instance, its fetal movement brochure was now available in 18 languages from Arabic, Bengali and Burmese, through to Tongan, Thai and Vietnamese.

In response to last year’s Senate Select Committee on Stillbirth Research and Education, the Federal Government announced  a $7.2 million funding package to help reduce Australia’s stillbirth rate.

Professor Flenady said the Stillbirth CRE was leading the development of a Safe Baby Bundle – modelled on a successful UK program to target evidence—practice gaps in stillbirth prevention.  “We hope to engage with culturally and linguistically diverse [CALD] populations in a co-design process where we meet and talk to women and develop the resources that they need to understand the risks and key management strategies to reduce the risk of stillbirth,” Professor Flenady said.

Modelled on a successful UK program, the Safe Baby Bundle will target areas of substandard care.

“We are rolling out educational programs for clinicians and related resources for women, including a mobile phone app. We hope to engage with culturally and linguistically diverse populations in a codesign process where we meet and talk to women and develop the resources that they need to understand the risks and key management strategies to reduce the risk of stillbirth,” Professor Flenady said.

The University of SA’s Associate Professor Warland said it was important to address preventable stillbirths in all populations in Australia. She said campaigns developed as a result of last year’s federal funding needed to be culturally sensitive to all Australians.

“Most pregnant mums are not aware of the simple things they can be doing to reduce their risk, such as getting to know their unborn baby and immediately reporting changes in their baby’s movements, going to sleep on their side from 28 weeks, and trusting their maternal instincts,” Associate Professor Warland said. “This important information needs to be available to all Australian women whatever their culture or language.”