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Stillbirth guidance embeds cultural safety and care after loss for families

The article below is published by Croakey Professional Services as sponsored content. It is funded by the Australian Commission on Safety and Quality in Health Care.


A new clinical standard aimed at helping to reduce Australia’s stillbirth rate by one-fifth over the next two years will be launched today, with a strong focus on cultural safety for Aboriginal and Torres Strait Islander women and care after a loss for bereaved women and their families.

The Australian Commission on Safety and Quality in Health Care’s Stillbirth Clinical Care Standard is being launched at the National Stillbirth Forum in Brisbane, hosted by the Centre of Research Excellence in Stillbirth (Stillbirth CRE).

The Standard, which has been endorsed by 26 key organisations in reproductive and maternity health, sets out the minimum expected care in the preconception, pregnancy and post-bereavement periods for expectant families affected by the birth of a baby who has died in utero after 20 weeks of gestation or at a weight of greater than 400 grams.

It was developed by the Commission in response to an action outlined in the Australian Government’s 2020 National Stillbirth Action and Implementation Plan, which recommended that a clinical care standard be developed as part of efforts to increase best practice and cultural safety in stillbirth prevention and care.

Seven in every 1,000 babies delivered in Australia each year are stillborn. Rates of late-gestation stillbirths (those that occur after 28 weeks gestation) compare poorly against similar countries such as the Netherlands, Finland and Denmark, where rates are almost 50 percent lower. More than 2,000 Australian families will experience a stillbirth in any given year, which represents a profound and harrowing loss with lifelong impacts for those affected.

Disparities exist at a population level, most markedly for rural and remote communities (12 per 1,000 births) and Aboriginal and Torres Strait Islander peoples (11 per 1,000). Importantly, 20 to 30 percent of stillbirths are thought to be preventable.

Access to adequately resourced, timely, culturally safe and responsive care is a major piece of the puzzle for these priority groups, and the Commission hopes that by embedding best practice along the continuum of care, inroads can be made to lift the standard for all.

“Australia has a lot of challenges that many other countries don’t face, but that doesn’t mean we can’t do better. I think we definitely can, and that’s why we have produced this clinical care standard,” explained Commission Clinical Director Associate Professor Liz Marles, who oversaw development of the Standard as the topic working group chair.

“The more we can support health services, clinicians and consumers to know exactly what it is they should be doing, and the more we can Sstandardise that across the board, the more likely we are to be reduce the rate of stillbirth.”

Key areas

The Standard is comprised of 10 detailed, evidence-based quality statements, covering key areas for intervention including stillbirth risk assessment both before and during pregnancy, and awareness of, and education around strategies to reduce this risk including safe sleeping positions and smoking cessation.

Changes in fetal movements, the role of ultrasound in surveillance, and informed decision-making about the timing of delivery are covered, and much of this work complements and supports other clinical initiatives in this space including the Safer Baby Bundle.

Professor Adrienne Gordon, an experienced Sydney neonatologist and chief investigator with the Stillbirth CRE, was instrumental in the rollout of the Safer Baby Bundle and in drafting the Perinatal Society of Australia and New Zealand’s Clinical Practice Guideline for Care Around Stillbirth and Neonatal Death.

Gordon was also closely involved in the drafting of the Commission’s new Standard, and says it reinforces and affirms much of the messaging of these earlier pieces of work on stillbirth prevention and management.

What is new, and in Gordon’s view both welcome and overdue, is the Standard’s emphasis on the care that should be provided in all services following a stillbirth, including what investigations should be done, and how to sensitively communicate about these with families.

The ninth quality statement deals with bereavement care and support for birthing parents and families after any perinatal loss, and the Standard concludes with guidance regarding care in subsequent pregnancies, all of which Gordon says have been historically overlooked.

“It is really great to have something that is national, that advocates for consistency and places the same importance on care after a perinatal loss as, say on preventing hospital-acquired infections, in terms of accreditation and quality Standards,” Gordon said.

“However much we focus on prevention – and while we are certainly doing better than before, especially with later gestation stillbirths – there are always going to be families who suffer the tragic loss of a baby. So having a standard that, while focused on prevention, also focuses on bereavement care, is the thing I applaud.”

Respectful care

Cultural safety is highlighted as a key element of compassionate and respectful care, including for bereavement, and the Standard contains a specific section on the “complex and multifaceted” drivers of higher stillbirth rates in Aboriginal and Torres Strait Islander populations.

Though in absolute terms the stillbirth rate is about twice as high for First Nations families, Gordon says this effect disappears when the data are adjusted for risk factors such as smoking, maternal age and socioeconomic status.

“Aboriginal and Torres Strait Islander people are definitely overrepresented in the numbers but it’s not because our First Nations families are different, it’s the fact that their access to care and support is very different, driven by a history of inequity,” Gordon said.

Deanna Stuart-Butler, an Arabana woman from South Australia’s Lake Eyre region with 20 years of experience in maternity care, was involved in the drafting of the Standard, as chair of the National Stillbirth Indigenous Advisory Group.

Stuart-Butler has seen first-hand the damage wrought by culturally unsafe practices, models and institutions, leading expectant parents to discharge against medical advice, to eschew antenatal care, and even go into hiding to avoid air evacuation when things don’t go to plan.

Leaving elders and children in community

In the case of a pregnancy loss, the devastation is compounded by being away from kin and Country, and by time taken for release of the baby’s body while investigations including autopsy are completed, she said.

“There is not necessarily an understanding of what that means to an Aboriginal woman and her family, the delays in being able to take baby home to Country and have ceremony,” Stuart-Butler explained. “There is a risk of causing more trauma to family and community.”

Because the resources required to assess and manage higher risk pregnancies and potential complications are often not available in the settings where expectant First Nations families live, particularly for remote communities, birthing parents are expected to travel considerable distances to the nearest maternity centre, Stuart-Butler said. In some cases, this could be for something as simple as a fetal wellbeing scan.

For an Aboriginal woman, such journeys involve abrogating complex family and kin responsibilities to Elders for other children, as well as being away from the support of Country, culture, ceremony and community.

Rather than dismissing such patients as “non-compliant” when they are reluctant to engage with healthcare services, Stuart-Butler said the Standard urged clinicians to question “why that might be” and to consider that “cultural risk is just as important as clinical risk”.

“If they can reflect on their own practice, I think that will make all the difference,” she said.

Stuart-Butler said it was impossible to separate paternalistic maternity policies from the long colonising legacy from which they arose, and the power imbalances, racism and discrimination implicit in these settings had to be recognised.

“There is a whole history around the Stolen Generations and babies being taken away,” she said. “I might not have been there when these things happened, but I have heard the stories from grandparents, from parents, from aunties, and we carry that. It causes intergenerational trauma.”

Stuart-Butler recently returned from the The Best Start To Life conference, a national gathering hosted by the Molly Wardaguga Research Centre and the Central Australian Aboriginal Congress in Mparntwe/Alice Springs. It brought together a range of maternity professionals and disciplines to discuss models of care that empower Indigenous women to deliver in their communities.

“Aboriginal women have been birthing babies for thousands of years, they know what to do,” she said. “We need to hand it back, let women be able to birth on their own Countries and have the support systems within their own communities. We should have birthing centres set up all over Australia for that purpose.”

The Stillbirth Clinical Care Standard stresses that provision of culturally safe, accessible and equitable care is not only the responsibility of Indigenous services and staff but a priority for everyone in the system, and each of the 10 quality statements has guidance for supporting cultural safety and equity.

Meaningful impact

Too often, Gordon says families don’t understand they had a poor experience until “becoming part of this club that they never knew existed after pregnancy loss” and, hearing the stories of other survivors, “they realise that the care that they had was lacking”.

Gordon was involved in a research project called the Sydney Stillbirth Study, which ran for six years across nine metropolitan hospitals and detailed wide variation in the investigation, care and support offered families after a perinatal loss.

There were inconsistencies post stillbirth – in who counselled a family, how senior they were and whether they had a prior clinical relationship, as well as in what follow-up was offered or whether on-referral was made to specialist support services like Red Nose or Sands, Gordon said.

Some families received investigation results while others didn’t, planning for future pregnancies was not offered to everyone, and providing an account of events was by no means universal, with differences in how and to whom this was provided, she added, describing communication as “key”.

All these elements are addressed in the Standard, which Gordon is hopeful will have a meaningful impact on Australia’s efforts to reduce stillbirths by 20 percent by 2025, in line with the National Stillbirth Action and Implementation Plan.

“Something like this Standard has a much greater potential to translate to health service change because it is not just left to clinicians to implement best practice, it’s that wraparound: parents will ask for it, clinicians will want to do it, and health services will be encouraged to report on it,” she said.

Victoria’s version of the Safer Baby Bundle project – known as the Safer Baby Collaborative – has demonstrated that across-the-board implementation of measures like those contained in the Commission’s Standard can bring down stillbirth rates by around 20 percent, showing that “change is possible, it’s about structuring your healthcare services,” Gordon said.

As with all the Commission’s clinical care standards, the stillbirth guideline has advice targeting services, clinicians and consumers within each of its quality statements and is supported by a suite of resources including fact sheets aimed at each of these groups.

In primary care, Marles said the Standard will be an invaluable resource for general practitioners – who not only provide the bulk of preconception care, along with antenatal care, in Australia – but also offer continuity and support for families following a perinatal loss.

Perhaps most importantly for those who have worked on developing the Standard is that it helps to break down stigma around stillbirth, offering a framework for support and care that acknowledges the particular scale and nature of a perinatal loss.

“It’s bringing a taboo subject out into the open, it’s allowing us to have conversations about stillbirth so that we are not only going to raise awareness of this issue, but we are going to help people address it – and hopefully families that are affected by this are much better supported,” said Marles.


The Standard’s launch will be live-streamed by the Commission at 12:00 AEDT on Friday, November 4. Register here: https://safetyandquality.tv/

Access a copy of the Standard and resources at: safetyandquality.gov.au/stillbirth-ccs


See previous articles in the ACSQHC series.


This article was written by Dr Amy Coopes and edited by Dr Melissa Sweet, on behalf of Croakey Professional Services.

The series was conceptualised and sponsored by the Australian Commission on Safety and Quality in Health Care, which had final say over the content.


 

 

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