Improving quality of care
Recent Australian and international research on stillbirths, including
inquiries into cases of substandard care, has shown that many stillbirths are
preventable and that the number of deaths can be reduced through improved
quality of care. According to the Centre of Research Excellence in Stillbirth
(Stillbirth CRE), deficiencies in the quality of care in pregnancy and labour are
implicated in 20−30
per cent of all stillbirths.
The Royal Australian and New Zealand College of Obstetricians and
Gynaecologists (RANZCOG) stated that the 'model of care directly influences the risk of perinatal death'. Antenatal care, for example,
increases the probability that fetal growth restriction (FGR) will be
identified before labour.
women who accessed six or more antenatal visits were associated with a lower
stillbirth rate than women who accessed fewer antenatal visits or had not
accessed antenatal care at all.
Nevertheless, there is no agreement amongst health professionals as to
the most appropriate models of care in relation to stillbirth, and several
submitters proposed that further research is needed in this area, particularly
for women who may be at higher risk of stillbirth.
This chapter examines quality of antenatal and bereavement care in
relation to stillbirth, including culturally and linguistically appropriate
models of care.
Continuity of care
There are different models of care for women in the perinatal period,
including hospital clinic care, shared maternity care, team midwifery care,
midwifery-led continuity of care, and planned homebirths.
Continuity of midwifery care is a strong traditional practice in parts
of Europe including The Netherlands and Scandinavia. New Zealand has also
adopted a midwifery care model, whereby about 80 per cent of women choose a
midwife as their lead maternity carer and give birth at home, in a small
midwifery-led unit or in a district or major hospital. Canada is
also beginning to invest in employing midwives in hospitals to provide
continuity of care.
Professor Caroline Homer, Distinguished Professor of Midwifery, Centre
for Midwifery, Child and Family Health, University of Technology Sydney,
estimated that 10 per cent of Australian women receive continuity of midwifery
care, while 25 per cent choose private obstetrician-led care. She noted that some
hospitals are shifting to the continuity of care model, but these tend to be
We now know from very good research from around the world,
half of which was collected in Australia, that midwifery continuity of care
will make a difference. If women see the same few midwives throughout their
pregnancy, they will know those, usually, women during labour and birth, they
will have fewer preterm births, they will be less likely to lose their babies,
they will have a much more positive experience, and they will have fewer labour
and birth interventions. It is not happening across the country. There are
pockets of exemplary practice, but it is not widespread, despite policy at a
state level. It is less so at a national level at the moment...I think there's
a lack of political mandate, a lack of resourcing and a lack of understanding
that continuity of care will save money in the long term.
Therefore, health care for most pregnant women in Australia is fragmented,
resulting in multiple caregivers throughout pregnancy. Ms Annie Butler, Federal
Secretary, Australian Nursing and Midwifery Federation, noted that midwifery
care models are known to be effective, particularly for women who experience
A 2016 Cochrane review conducted by Sandall et al highlighted
that women were less likely to lose their baby before 24 weeks when they
received models of midwife-led continuity of care. Midwifery continuity of care
models have a strong evidence base in best supporting women with past trauma
including stillbirth. Having a known midwife results in women experiencing
greater support and decreasing their anxieties and unnecessary use of
diagnostics and interventions.
Some witnesses argued that continuity of care is important throughout
pregnancy in building trust and understanding and enabling conversations that
include the subject of stillbirth.
The Australian College of Midwives cited research showing that a continuity of
care model, delivered by midwives, can reduce the rate of stillbirths.
Professor Michael Permezel, Immediate Past President, RANZCOG,
considered that a collaborative model of care where midwives and obstetricians
work together as a team, rather than 'obstetrician-led' care, is the most
effective model for lowering perinatal risk.
Professor Homer suggested that such a model has been implemented in some places
because of local will and enthusiasm as well as political leadership, but she
noted that there are lingering issues that present barriers to continuity of
care being introduced across Australia.
People always bring up the turf wars between midwives and
obstetricians, and I think that's actually less of an issue in public services.
Obstetricians generally want to look after complicated women in public
services, not normal, straightforward women, and, when they've got
complications, they want midwives with them because it enhances the whole care.
Stillbirth CRE proposed that a review of maternity services should be
undertaken, focusing on ensuring that all women have a continuity of care
provider, whether a midwife, a GP obstetrician or a specialist obstetrician.
In this context, Stillbirth CRE noted that it was developing a 'bundle
of care' program for Australian hospitals, in partnership with the departments
of health in New South Wales (NSW), Victoria and Queensland, Stillbirth
Foundation, and Still Aware. The 'bundle of care' program is aimed at:
- improving detection and management of FGR;
improving awareness and management of decreased fetal movement;
reducing smoking in pregnancy;
improving awareness of maternal safe sleeping position; and
improving decision-making around timing of birth for women with
The 'bundle of care' program is modelled on the United Kingdom National
Health Service Saving Babies Lives bundle, which identified areas of
substandard care and has resulted in a fall in stillbirth rates by one fifth in
maternity units where the Care Bundle was implemented. It showed that, when the
elements of care were implemented as a package, greater benefits were achieved
at a faster pace than if those improvements had been implemented individually.
The Scottish AFFIRM study is assessing whether rates of stillbirth may
be reduced by introducing an interventional package of care. It is aimed at
increasing a pregnant woman's awareness of the need to promptly report
decreased fetal movements, followed by a care management plan to identify
possible placental issues, and timely delivery in confirmed cases.
Whilst there are some good examples of continuity of care to be found, a
lack of resourcing and understanding of the social and economic benefits of
continuity of care inhibits wider acceptance of the model.
Public versus private health care
Mrs Doshni Stewart told the committee that a continuity of care model
does not appear to be available in public hospitals and that, from the
perspective of a pregnant woman, continuity of care is essential because the
midwife knows her medical history and is able to implement a care plan taking
account of risks.
Dr Michael Gannon stated that many women do not have access to private
maternity care, and that further work needs to be done in developing innovative
public care models that seek to overcome the mortality gap.
A recent study comparing perinatal mortality between public and private
hospital care showed that mortality occurred more frequently in public care,
although the disparity was not explained by population differences. Whilst
differences in clinical practices seemed to be partly responsible, further
research was needed to examine whether the private hospital obstetrician-led
continuity of care model would improve outcomes in Australia.
Dr Nisha Khot, a medical practitioner in the public health system, noted
that appointments generally last for 15 minutes, and a pregnant woman will
generally not see the same doctor for every appointment. She suggested that
there should be a process for identifying those who need lengthier
Mrs Tiffany McIntosh considered that the approach to her care in the
public system most likely contributed to her baby's stillbirth. When comparing
her experience with private care in her two subsequent pregnancies, she
concluded that continuity of care with the same doctor had been an important
factor in their positive outcomes.
When you're seeing different doctors, you report that you're
experiencing a symptom: 'Oh, okay. If it keeps happening, make sure you let us
know.' But then, when you go to your next appointment, it's a different doctor.
Rural and regional care
The burden of stillbirth is borne disproportionately by women in
circumstances of socio-economic disadvantage, Aboriginal and Torres Strait
Islander families, those living in rural and remote areas, and those who have
difficulty in accessing antenatal care.
The lack of continuity of care is particularly acute for women in rural
and regional centres, and has been exacerbated by the closure of small rural
maternity services forcing pregnant women to travel long distances away from
their family in order to receive care with negative impacts on their maternal
health and wellbeing. The National Rural Health Alliance reported that:
...to avoid the family distress women in rural and remote
areas...do not report pregnancy, avoid antenatal care so they will not be
recognised by the system and then present late for care, consequently risks to
maternal and fetal health can be missed.
Dr Khot suggested that a model could be introduced whereby a health
expert in the city could liaise with local practitioners say, by
teleconferencing, rather than the pregnant woman having to travel to a city for
care not available in their own locality.
Whilst communicating with women via the internet or telephone may not be
ideal for those living in rural and remote communities where community-based
care and support is desirable, there are circumstances where it may be the best
...I think we need to have strong hub-and-spoke models for
providing the tertiary care when it's needed. For example, we do telemedicine
with Royal Darwin, and we're very cognisant of the huge burden that it is for
women to travel for a suspected diagnosis of fetal abnormality. Yet if we can
either make the diagnosis—or, in many cases, reassure them that there is no
abnormality—it saves that family the enormous burden, financial and emotional,
of having to travel to one of the major centres.
Culturally appropriate models of care
Aboriginal and Torres Strait
The Department of Health's evaluation of qualitative studies in
Australia and Canada in 2017 found that the best continuity of care model for Aboriginal
and Torres Strait Islander families was one where there were strong community
links and control by Aboriginal and Torres Strait Islander communities. It
recommended that mainstream services such as GPs and public hospitals should
'embed cultural competence into continuous quality improvement'.
The Stillbirth CRE reported that it has established an Indigenous
Advisory Group which, while still finalising its terms of reference, aims to
develop strategies to prevent stillbirth, provide better information about
choices, and culturally appropriate models of care for Aboriginal and Torres
Strait Islander women and families. The expectation is that it will have
Indigenous leadership and work in a partnership model, build capacity amongst Aboriginal
and Torres Strait Islander staff in maternity care, and advise on culturally appropriate
models of care to prevent stillbirth.
Closing the gap in stillbirth rates
Stillbirth CRE noted that culturally relevant strategies needed to be
developed in partnership with Aboriginal and Torres Strait Islander researchers
and communities, recognising that pregnancy 'is a key window to address the
intergenerational impacts of racism, trauma and disadvantage'. Specific areas
highlighted for attention included early and adequate antenatal care for
Aboriginal women to ensure health and social issues are addressed early and
supported with appropriate models of care; infection prevention and control;
smoking-cessation programs; and obesity (and nutrition) strategies.
A 2014 study of stillbirth rates amongst Aboriginal and Torres Strait
Islander and non-Indigenous women in Queensland made similar findings.
High-quality antenatal care at all levels using culturally
appropriate service delivery models that incorporate diabetes management,
smoking cessation, STI screening and treatment, folic acid and fetal growth
monitoring hold some promise of helping to improve pregnancy outcomes for
Professor Craig Pennell, Chair of the Red Nose National Scientific
Advisory Group, noted that Red Nose has invested $17.6 million into research
into stillbirth and Sudden Unexpected Death in Infancy (SUDI) over the past 40
years and, for the past decade, the organisation has had Indigenous
representation on the advisory group and has been working to build
relationships with Indigenous leaders and experts to create cultural change in
relation to managing stillbirth and SUDI risks.
An evaluation of models undertaken for the Department of Health in
relation to Aboriginal and Torres Strait Islander women's antenatal care concluded
that a number of culturally appropriate care programs have been implemented
around Australia, with positive outcomes.
The Aboriginal Maternal and Infant Health Service established in NSW to
improve the health of Aboriginal women during pregnancy, for example, delivered
a continuity of care model where midwives and Aboriginal health workers
collaborated to provide a high-quality maternity service that is culturally
sensitive, women-centred, and provided in partnership with Aboriginal people.
The evaluation also found positive and cost-effective improvements to
maternity care in a Northern Territory regional centre, where a midwifery group
practice was introduced to provide continuity of care for women from remote
communities who were transferred to the centre for antenatal care and birth.
The practice resulted in women being more engaged with the health services
through their midwives.
Ms Sara Potter, Clinical Nursing Midwife, Maternity Ward, Katherine
Hospital, noted that many of the women who attend the Katherine Hospital to
give birth can live up to 600 kilometres from Katherine, much of it on unsealed
road. She stated that the hospital supports a collaborative care model for
providing antenatal care.
What we strive for is a seamless approach or, for the women,
a seamless journey. That's looking at the origin of the antenatal care when
they're coming in to us, and, when they go home back to their community or back
to their local Aboriginal Medical Service that may well be a local service,
that collaboration is then looking at the integration, coordination, and
sharing of information between those health services.
Dr Megan Cope, Senior Medical Officer, Wurli-Wurlinjang Health Service, confirmed
the value of this team approach to antenatal care provided in partnership with
the Katherine Hospital.
Birthing on Country
Birthing on Country (BoC), a model of Indigenous maternity care operating
in Canada for several decades, was first introduced in Australia in 2013. In
2016 a BoC maternity services program was launched as a partnership between the
Australian College of Midwives, the Congress of Aboriginal and Torres Strait
Islander Nurses and Midwives (CATSINaM), the University of Queensland and the
University of Sydney. BoC is a community-driven solution to Closing the Gap,
focusing on reducing the stillbirth rate and improving the general health and
wellbeing of Aboriginal and Torres Strait Islander women.
BoC was tailored to an urban setting in Queensland known as Birthing
in Our Community (BiOC). It is conducted by the Mater Mothers Hospital in
Brisbane, in partnership with two local Aboriginal Community Controlled Health
for Urban Indigenous Health and Aboriginal and Torres Strait Islander Community
Health Service, Brisbane Limited.
There is no specific training for stillbirth and bereavement care in the
BiOC program, although this is currently being discussed with Stillbirth CRE. BiOC
aims to bring birth back to
community and country, and offer safe and culturally appropriate maternity
services for Aboriginal and Torres Strait Islander mothers and babies.
The BiOC model of care facilitates the development of
trusting and respectful relationships with known members of the
multi-disciplinary team (including social workers and psychologists) which
supports individualised and responsive care.
Research amongst Aboriginal and Torres Strait Islander communities
indicates that women believe birthing on country will improve maternal and
perinatal health outcomes, even though this challenges the Western concept of
health care which focuses on medical technologies and medico-legal liability.
The researchers have concluded that there needs to be a better understanding of
the social, cultural and spiritual risk of not birthing on country.
Indigenous women have stated that their relationship to the
land is compromised by birthing in hospitals where many also feel culturally
unsafe. Women also express a belief that the relationship between the new baby,
siblings and father would be better if they were together for the birth. The
health of Aboriginal and Torres Strait Islander Australians is integrally
linked to their culture and the land, a link that is strengthened by birthing
on their land. Enforced evacuation to distant hospital facilities breaks this
link, precludes the presence of family and integration of traditional
attendants and practices; and continues cultural disconnection into the next
Culturally and linguistically
Most research and data related to stillbirth tends to focus on the
mainstream population. However, 34.6 per cent of mothers who experienced
stillbirth were born in countries other than Australia (see Chapter 2).
Some researchers raised the importance of culturally safe health care
practices, whereby carers are required to reflect on how their own culture,
history and biases might influence the care they deliver to culturally and
linguistically diverse (CALD) families. However, it was acknowledged that few
health professionals understand or receive specific training in this area.
The Multicultural Centre for Women's Health recommended culturally and
linguistically appropriate health care, education and support that include
bilingual health workers and culturally appropriate health education activities
and participatory approaches.
Dr Jasmin Chen, Research and Executive Officer with the Multicultural
Centre for Women's Health, argued that there is a need to listen to mothers and
their families from non-English speaking countries to understand why pregnant
women are less likely to access antenatal care in their first trimester.
...we also need to hear and amplify the voices of migrant and
refugee women within research and education...we need to listen to mothers and
families. We need to let people tell their stories.
Mothers of South Asian origin
Professor Euan Wallace, Carl Wood Professor and Head of Department of
Obstetrics and Gynaecology, Monash University, described how changes to
clinical practice at Monash Health had helped to reduce stillbirth in women
born in South Asia. The hospital observed a significant increase in pregnancies
amongst women of South Asian origin from about 2009 corresponding to the
increase in South Asian students studying at nearby Monash University.
Importantly, they accounted for all the stillbirths at the hospital.
Researchers noted that the increase in stillbirth risk at the end of
pregnancy happened much earlier in women of Indian or South Asian descent than
in other Australian women. This finding resulted in the introduction of a new
guideline of care in which the women at risk were offered an earlier
intervention than was standard practice. There have been no stillbirths in
South Asian women at term since then.
These findings suggest that care guidelines need to be tailored to
particular women whose risks may differ from the majority, and points to the
need for more research on stillbirth in relation to ethnicity.
What's fascinating about the work is that women of South-East
Asian descent—so Chinese, Vietnamese, Cambodian—have a 40 per cent lower risk
of stillbirth than white Australian women, and we don't know why. It goes to
Sue's point that to solve stillbirth we need discovery research. We need to
understand why Indian babies are at high risk of stillbirth and why Chinese
babies are at lower risk of stillbirth. We don't know.
A more detailed understanding of specific risk factors, combined with
more granular data and standardised collection of data across Australia, could
help stillbirth researchers to create a tailored program of pregnancy care and
timing of delivery in the same way that Monash has successfully done with
Mrs Stewart reported that, as a woman of South Asian background, her
pregnancy was around two to three weeks shorter than that of Caucasian women
and that the medical staff involved in her care seemed unaware of this prior to
This has serious implications for the management of women and
their unborn babies, with potentially dire consequences. With a huge influx of
migrants in Australia, there should be adequate management of racially based
health markers to identify groups at risk and to alter their care plan
accordingly. My recommendation, firstly, is that there be a system to alert all
those caring for pregnant women to any new research that may be relevant to
their work. Secondly, I recommend that, very early in pregnancy assessment,
mothers be placed in appropriate risk groups and their care plan be put in
place so that decisions or recommendations are met strictly in conjunction with
the associated known risks.
Support for bereaved families
Several voluntary services offer support for bereaved families following
miscarriage, stillbirth or the loss of a baby, including Red Nose, Post and Antenatal
Depression Association, and Stillbirth and Neonatal Death Support (Sands
Australia). Sands Australia, for example, provides peer-to-peer bereavement
support with different types of services provided to suit different needs,
including in-hospital bereavement care.
Mrs Lyndy Bowden, Caretaker CEO of Sands Australia, emphasised the
importance of timely and accurate data to ensure that bereavement services are
targeted appropriately and available for bereaved families in the longer term,
'because when your baby dies you don't forget'.
We have an older-loss group. Sometimes we will have someone
who is in their 70s and doesn't know where their baby is buried. Sometimes they
don't even know what the sex of their baby was. We can walk them through how
they can get that information. And they also look for that support. For some
people it's the first time they've ever said the baby's name to someone. We're
finding a lot of parents that are calling up or coming to the support group
saying, 'I wish I'd known about you when our baby first died.' Because
sometimes it's a couple of weeks, a couple of months or a couple of years. When
they leave the hospital and go home, there's nothing in that space if they
don't know about us.
Hospitals and health centres
Dr Adrienne Gordon, Neonatal and Perinatal Medicine Specialist,
Royal Australasian College of Physicians (RACP), recalled working in a rural
centre where there was more of a team approach to assisting bereaved families,
noting that this is more difficult to achieve in busier hospitals and in a
'fractured health system' that does not provide coordinated health care for
Some hospitals have adopted strategies to ensure that hospital staff are
aware of bereaved parents and families that have experienced a stillbirth so
that they 'adjust their demeanour appropriately' when caring for them.
Strategies include flagging a stillbirth record in the hospital system, and
placing a butterfly—the
universal symbol of stillbirth—on
the doors of suites where the baby has been stillborn, or on the cot of a
surviving baby to indicate a multiple pregnancy where a sibling has been
Several witnesses and submitters reported significant differences in the
standard of bereavement care received from their respective hospitals.
...the hospital staff were outstanding in their support and
compassion. We had the best of care and were allowed as much time as needed to
stay with Coralie. We were provided with a refrigerated cuddle cot and given a
private room away from the maternity ward. They further supported us with
pastoral care, bereavement support, memory boxes and keepsakes and provided
crucial advice on funeral arrangements and Centrelink payments.
When my daughter was stillborn in 2002, the staff admitted
they did not want to believe that she had died in utero, so convinced
themselves that it was her heartbeat they were monitoring. The bereavement
support we received following her birth was terrible, the staff were
uncomfortable and didn’t know how to look after us.
We wanted to make special mention of the compassionate acts
of the midwives who assisted with Magnus’ birth, their kindness and
professionalism was outstanding, I will never forget the midwife who stayed to
support me even though her shift had finished. She just stayed to hold my hand.
The hospital provided bereavement midwife was on leave when Magnus was born but
she was helpful and supportive when she returned from leave and got in contact.
Three weeks after my daughter passed away, I received a call
from the hospital saying that my daughter was due for a vaccination as she had
not received it. I had to inform the person calling that I had a stillbirth and
hence the call did not apply to me. This was not right. I should not need to
have explained to the hospital that my daughter had died, the same hospital
where I gave birth and where they registered my daughter’s death.
Concern was also expressed about the lack of privacy in hospitals for
those experiencing stillbirth. Parents about to knowingly experience stillbirth
are likely to be further traumatised by being placed in a labour ward with
mothers who have given birth to live babies. Ms Alex Lowe stated:
...I knew that I had to go to hospital to birth my daughter and
was admitted along with mothers who had live babies. I could hear their labour
cries and the babies crying. Our room was silent.
Some witnesses praised the support received from the Integrated Support
After Infant Loss (iSAIL) clinic, which was established with private funding
and offers coordinated meetings between the bereaved parents and clinicians or
health professionals in the immediate period after stillbirth. Whilst that
service is not available in many hospitals, it was considered a valuable model
of care that should be available for everyone.
They were fantastic in coordinating people to meet with us if
we wanted to see a particular specialist or ask questions. Anything that we
requested we felt that we had that opportunity. So I do think that we were
particularly fortunate that we received very good care afterwards, but, from
what I understand, that's not the norm.
Dr Gordon established the iSAIL clinic in the Sydney local health
district. She stressed the importance of a custom-designed clinic providing
continuity in care for bereaved parents so that they do not have to repeat their
story to different people. She also highlighted the need to involve parents in
the death review process.
Other submitters and witnesses offered a range of suggestions for
improving the level of care and support in hospital for bereaved parents and
their families following a stillbirth. These included:
- providing bereaved families with access to an appropriate private
space in which to say goodbye to their baby and to receive support from a
providing a 'cuddle cot' (a cooling device placed into the cot),
enabling parents to have more time with their deceased baby and giving them the
opportunity to make necessary decisions regarding autopsy and test procedures;
providing bereaved families with the opportunity to discuss the
stillbirth and related issues in a follow-up consultation with clinicians or
other health professionals, including the results of any post-mortem
investigation; and giving parents the opportunity to acknowledge the hospital
ensuring that the information and terminology used when
communicating with bereaved parents experiencing a stillbirth is accurate. In
one case the bereaved parents were told they had lost a son and only discovered
that their baby was a girl from the autopsy report. The invoice they received
from the hospital was also insensitive, identifying the stillbirth as an
Returning home from hospital
Hospitals also need to have strategies in place to care for bereaved
families after they have returned home. Stillbirth CRE considered that there
needs to be better integration of hospital and community services following
stillbirth, so that bereaved parents receive appropriate support when they
transition from hospital to community care.
Another witness expressed concern about the lack of follow up care from
the hospital after they returned home. However, she was full of praise for the
care she received whilst at the hospital, and highlighted the importance of
bereaved parents receiving timely information and support.
We were given a beautiful memory box to take home which we
will always treasure. The box also contained a book from Pregnancy Loss
Australia, with lots of information about giving birth to a stillborn baby,
creating memories, services like Heartfelt and information about online support
groups. I wish this book would have been given to me earlier, before my
daughter was born. I found out about lots of services and ways to create
memories when it was already too late. The two only photos we have of our
daughter, apart from the hand and feet ones the midwives took, are from the
pathology in South Australia and I cannot express how grateful I am for those.
Listening to bereaved parents
One important facet of training for clinicians and other health
professionals concerns how to listen to bereaved parents and encourage them to
contribute their personal knowledge and experience following a stillbirth. As
Mrs Clare Rannard explained:
...in the aftermath I feel a great sense of frustration that I
knew the story best, it happened to my body, I lived through the days and hours
leading up to this event and I remember it very clearly, yet I was never asked
to tell my version of events...It's also quite intimidating to face up
continually to specialist consultant doctors who have the experience and the
knowledge to explain things away. You feel small and you feel alone and
unsupported on the other side of the table against medical hierarchy.
Ms Terri Ryan pointed to the long-term consequences for women who do not
raise their concerns and subsequently experience a stillbirth:
No person is more qualified to tell a woman what is going on
with her body than the mother. Too often women are ignored when they raise
concerns. We have full medical insurance. The question becomes what harm would
it have done to place me under observation and monitor the baby for 24 hours?
12 hours? I will forever feel the weight of NOT speaking up, being too
complicit and trusting, not asking for more to be done.
The experience of a stillbirth commonly results in significant emotional
stress in subsequent pregnancies and postnatal anxiety and depression. Indeed,
research suggests that women who have experienced a stillbirth have a five-fold
increased risk of stillbirth in subsequent pregnancies.
As one witness described it:
The stress and anxiety of the pregnancy took a severe
physical and mental toll on me. I would lay awake at night monitoring Obie's
movements, I would have panic attacks and late-night rushes to emergency
because I thought something was wrong. It was exhausting and terrifying. I
wouldn't buy baby items or set up a nursery—I
was convinced I would lose another baby (it was all I'd ever known). I would
see my doctor for fortnightly and then weekly ultrasounds and fought tooth and
nail for an early induction.
Several witnesses noted that bereaved fathers are often overlooked in
the provision of advice, education and support. The implication is that they
should be able to cope with the loss while providing support for their partner.
As one submitter put it:
Although support for bereaved mothers needs improvement,
there is barely any support for a bereaved father. Men need hand holding
through this trauma too.
Sands Australia reported that bereaved fathers' grief responses may be
quite different to those of bereaved mothers, in that they may feel that they
need to be strong and supportive and put their own grief on hold. They may also
feel that their grief is dismissed.
One bereaved father explained the need for better education and care for
fathers experiencing the stillbirth of their baby.
As a father, I have often felt left behind in this journey
and it has often seemed that stillbirth is a women's issue. Listening to parts
of yesterday's session in Sydney, I rarely heard about the impact on dads. I
rarely hear dads mentioned and, invariably, we seem to get lumped in with
families and partners. I am saddened to see, as I look at the committee, that
there is no male presence either. One of the most important things that was said
to me after the loss of our son was by our midwife, who came into our room and
said, 'You won't understand this now, but you will in time: hello, mum and
dad.' At the time, it seemed like a bizarre statement. As dads, we carry our
own grief and, too often, we put this aside to support our partners. We are
told to be strong for our wife, for our partner, for our families; we are
usually asked how the wife is and rarely are we asked how we are. I can't
recall the last time someone called me to see how I am doing. There is little
research into the impact of stillbirth on dads, and dads seem to be resistant
to attending support groups and seeking counselling. We need to find a way to
engage dads in a way that will support them in our grief journey. Engaging in conversations
around stillbirth that seem to imply that stillbirth is women's issue doesn't
help; we have had our loss as well.
Ms Kate Obst, a researcher at the University of Adelaide, reported on
recent studies into the psychological impact of pregnancy loss on men. She
noted that bereaved fathers received variable levels of support, but a
consistent theme was a lack of recognition of their experience, either by the
healthcare system and workplaces upon return to work, or amongst family,
friends and the community.
Ms Obst suggested a range of strategies for more male specific and informal
support options, including male support workers in hospitals and 'more blokes
on pamphlets' to normalise support for men affected by stillbirth.
Mr Adam Flanagan suggested that innovative approaches such as
'wilderness therapy' might help grieving fathers. He noted that a large
proportion of couples break up after a loss, and that grieving men need ways to
address their anger, regret and pain. He suggested that men may find it easier
to interact and disclose their experiences and needs through shared activity,
'shoulder to shoulder rather than face to face'.
Bereaved siblings and grandparents
Antenatal education and post-stillbirth care tends to focus on the needs
of the mother, but there has been little attention given to the experiences of
bereaved siblings, grandparents and other family members. Emerging research
suggests that educational programs about stillbirth are required and need to be
tailored to their needs.
The PriceWaterhouseCoopers study found that there were significant
flow-on effects of a stillbirth for other children, grandparents, extended
family and friends (see Chapter 3).
Siblings and grandparents in particular were affected
negatively by stillbirth. Some family members sought counselling to deal with
the negative effects: ‘My Father in law was very sad & depressed by the
stillbirth of his first grandchild. So much so that he sought counselling’; ‘My
mum was highly affected by the loss...She was her first grandchild and she
really struggled to be there for me as her grief was so intense...’; ‘Parents on
both sides were profoundly impacted and depressed, some had to seek therapy...’;
‘...my best friend was put on anti-depressants. All my friends rallied around
us and it had financial and mental impacts on many people’.
Studies conducted at the University of Adelaide have found that, whilst
grandparents are very often the first people to be called upon to support the
bereaved parents, most have no knowledge or experience of stillbirth.
Researchers noted that many experienced a lack of recognition of the
'overwhelming and long-lasting' grief of stillbirth, and noted the lack of
information about support services that may be available for bereaved
Other children in the family are also likely to be deeply affected by
the stillbirth of a sibling, and may need support and counselling to help them
with their grief. Julia and Debden Whaanga described the long-lasting impact on
Our two children are still grieving for their little sister
and had lots of behavioural changes after the loss of our daughter. It would
have been very helpful to have information about children and grief on hand
from day one.
Culturally appropriate bereavement care
Aboriginal and Torres Strait
Aboriginal and Torres Strait Islander women in Australia experience
twice the rate of stillbirth as non-Indigenous women (see Chapter 2), yet their
experiences of stillbirth are often overlooked. CATSINaM noted that there are
no specific guidelines or policies on bereavement care for Aboriginal and
Torres Strait Islander Australians, and recommended that guidelines should be
developed as part of culturally safe maternity care services, consistent with
the BoC model of care.
Evidence suggests that bereavement support for Aboriginal and Torres
Strait Islander women experiencing stillbirth needs to be tailored to their
particular circumstances, given that they often come from different places and
speak different languages.
They are absolutely suffering with the highest rates of
stillbirth, yet they're overlooked, and I think that's a huge cry for help. So
this issue needs funding, counselling services and, to repeat what Jane said,
major reform of not just midwives but midwifery students, medical students and
doctors—they don't do this well.
For bereaved families there may be particular cultural or religious
sensitivities in relation to autopsies and the timing of burial. Ms Potter
pointed to a general lack of understanding in the health profession about how
Aboriginal and Torres Strait Islander people view stillbirth, bereavement and
care after their babies are born. She noted that particular care needs to be
taken to provide stillbirth education that is for the whole community rather
than focusing just on educating women.
As a health professional and from my experience, I'm not sure
that we, as care providers, have a comprehensive understanding of what
Aboriginal people see as a stillbirth, what their feelings are around
stillbirth and, therefore, what their ideas would be around bereavement and
care after their babies are born. To have knowledge around that would be
invaluable. I don't think we do at the moment.
In 2017 the Townsville Hospital and Health Service and James Cook
University commenced a study to address the gap in fetal autopsy rates for Aboriginal
and Torres Strait Islander and non-Indigenous stillbirths. The study was
undertaken in recognition of the higher rates of stillbirth for mothers in the Aboriginal
and Torres Strait Islander population (13.3 stillbirths per 1000 compared to
7.1 deaths per 1000 for non-Indigenous mothers), and lower rates of fetal
autopsy observed in Queensland (28.5 per cent of Indigenous parents consent to
autopsy following stillbirth compared to 38.9 per cent for non-Indigenous
parents). The aim was to explore culturally appropriate ways to approach
Aboriginal and Torres Strait Islander families for consent to autopsy following
stillbirth and develop guidelines for health care providers.
Preliminary results indicated an autopsy rate of 25 per cent for Aboriginal
and Torres Strait Islander women in the study, which is well below the overall
rates in Queensland and other states. It summarised the reasons women and
families declined an autopsy as follows:
- not asked in a culturally appropriate manner;
not enough time to think about giving permission; and
not wanting baby 'cut up'.
Culturally and linguistically
Professor Pennell noted that one in three women who give birth in
Australia are born outside of Australia while the rate of stillbirth amongst
such women is double and even triple that of Australian-born women, depending
on their background. He argued that stillbirth education needs to be better
targeted to meet their particular needs.
Dr Clemence Due, Senior Lecturer, School of Psychology, University of
Adelaide, noted that pregnancy loss and stillbirth impacts on a range of
groups, but that there is very little research into the role of grief and support
following stillbirth for men and women from CALD backgrounds in Australia.
In summary, while we know something of the needs of
heterosexual women following stillbirth, there remain very large gaps in our
knowledge concerning the psychological impact and support needs of nearly all
other people impacted by a stillbirth, and we would advocate for further
research for these groups to ensure that whole families are supported in the
event of a stillbirth.
The 2018 Victorian Parliamentary Inquiry into Perinatal Services found
that support for CALD communities is variable and dependent upon the
availability of local services. It heard evidence about how women from CALD
communities and refugee communities face particular disadvantages and barriers
in accessing perinatal services as a result of:
- social isolation and vulnerability to developing mental health
conditions during the perinatal period;
difficulty in receiving support and services needed;
difficulty communicating and navigating health and social services;
inexperience of health professionals in working with CALD
insufficient use of interpreters to support women during
consultations and in hospital.
Some programs in Australia are being designed to meet the needs of
people from CALD backgrounds. For example Stillbirth CRE, in partnership with
stillbirth research and advocacy groups, has begun a program which gives
migrants and refugees access to face-to-face support visits with interpreters
and information translated into community languages.
Dr Chen reported that the Multicultural Centre for Women's Health specialises
in providing bilingual outreach health education for women. She pointed out
that the trauma of stillbirth is compounded for mothers and their partners
whose primary language in not English, and who may not have the support
networks of family and friends in Australia. Dr Chen highlighted that there is
limited stillbirth education and advocacy available for them, in part because
of the culture of silence surrounding stillbirth and the lack of funding for
translating educational materials in culturally appropriate ways.
Dr Chen discussed the Centre's success in conducting bilingual outreach
programs on other health issues, and argued that partnerships involving mothers
and parents as co-researchers, leaders and experts are likely to deliver the
most effective and meaningful stillbirth education campaigns and initiatives.
For example, in an unrelated project that I worked on, on
palliative care, we went out and did focus group work with five different
communities to try and understand more about their thoughts about grief and
grieving, their ideas about health as well, and how that might affect the
messages that we delivered to them and the approaches that we took. I think
that probably goes a long way to explaining why this hasn't been really discussed
through our service. It may be that it has been in other services but we're
quite unique, in terms of the work that we do.
Women experiencing socio-economic disadvantage, Aboriginal and Torres
Strait Islander families, those living in rural and remote areas, and women
from CALD backgrounds who may have difficulty in accessing antenatal care are
more likely to experience stillbirth in Australia.
The rate of stillbirth for Aboriginal and Torres Strait Islander babies
is unacceptably high, and requires a focused national effort to address the
contributing factors. The committee acknowledges the importance of birthing on
country in delivering community driven solutions. It is now widely recognised
that the best continuity of care model for Aboriginal and Torres Strait
Islander families is one where there are strong community links and control by Aboriginal
and Torres Strait Islander communities. Providing culturally appropriate
continuity of care for Aboriginal and Torres Strait Islander communities is
therefore a high priority.
International initiatives, such as the mandatory government requirement in
Scotland for clinicians to discuss fetal movement and stillbirth with all
pregnant women at antenatal appointments from 20 weeks' gestation, have been
successful in reducing stillbirths and provide a valuable model for creating a
cultural change in relation to stillbirth in Australia (see Chapter 7).
As part of this cultural change, mainstream health and hospital services
should be encouraged to embed cultural competence in their protocols and
training for clinicians and other health professionals.
The committee recommends that, through the Australian Health Ministers'
Advisory Council, the Australian government leads a process to develop a
national culturally and linguistically appropriate continuity of care model
aimed at reducing the rate of stillbirths in Australia, particularly amongst
groups identified as having a higher risk of stillbirth.
The Department of Health should contribute to this process by
undertaking a review of Australian and international models of culturally and
linguistically appropriate care, and identify examples of best practice that
have successfully reduced the incidence of stillbirth amongst Aboriginal and
Torres Strait Islander women, women from rural and remote regions, and women
from CALD communities.
Given the high rate of stillbirth amongst women from Indigenous
backgrounds, bereavement care guidelines need to be developed with public
hospitals and health centres, in consultation with local communities, to ensure
that they are culturally and linguistically appropriate and embedded within a
cultural safety framework and consistent with the BoC model of care.
Successful programs of bereavement care are already available in some
hospitals, such as the iSAIL clinic which offers coordinated meetings between
the bereaved parents and clinicians or health professionals in the immediate
period after stillbirth. However, culturally appropriate bereavement support
services should be available for all parents who have experienced stillbirth,
and such services should be better integrated with community services so that
bereaved parents receive appropriate support when they transition from hospital
to community care.
The preliminary findings of the 2017 study undertaken by Townsville
Hospital and Health Service and James Cook University indicated reasons for low
autopsy rates amongst Aboriginal and Torres Strait Islander families, and these
findings should be taken into account when preparing guidelines for culturally appropriate
bereavement support in hospitals and health centres.
The committee acknowledges that a lack of resources limits the capacity
for hospitals to locate and work with Aboriginal and Torres Strait Islander
parents who have experienced a stillbirth, and notes that some may be transient
or live hundreds of kilometres from the health service.
The committee recommends that the Department of Health, in consultation
with local communities, develops national best practice guidelines for
hospitals and health centres on providing culturally appropriate support and
information for bereaved families who have experienced stillbirth, drawing on
successful models such as the Integrated Support After Infant Loss clinic. The
guidelines should include provision for bereavement support and address the
specific needs of:
- bereaved fathers, siblings, grandparents and other family
families from rural and remote communities;
Aboriginal and Torres Strait Islander families; and
families from culturally and linguistically diverse backgrounds.
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