Select Committee on Stillbirth Research and Education

Select Committee on Stillbirth Research and Education

Department of the Senate

PO Box 6100

Parliament House

Canberra ACT 2600

By email:

Sunday, 30 September 2018

Dear Select Committee,

Re: Select Committee on Stillbirth Research and Education

I am writing to you on behalf of the Australian College of Midwives (ACM). The ACM is a national, not-for-profit organisation that the peak professional body formidwives in Australia. The ACM is committed to being the leading organisation shaping Australian maternity care, to ensure the best possible maternity outcomes for all Australian women. The ACM is guided by research evidence that pregnant women and mothers benefit from having access to midwifery care throughout their childbearing experience.

The word “midwife” literally means “with woman”, and midwives play a very important role in being with a woman and her family throughout pregnancy, labour and birth, and the six week postnatal period; even, and especially, when a baby dies.

Please find below a submission from the ACM about the future of stillbirth research and education in Australia, using the Committee Terms of Reference as a framework for the feedback.

1. consistency and timeliness of data available to researchers across states, territories and federal jurisdictions;

Midwives play a major role in collecting perinatal outcome data as they are usually the staff member who completes the notification forms for each birth. While there is a ‘Perinatal National Minimum Data set (NMDS) which is collected from jurisdictions across Australia, thedata is somewhat limited. Further, the way the data is collected, analysed, reported and shared varies across jurisdictions.Not all states and territories are able to share their data easily to create a national understanding of stillbirth. In particular, lessons learned from reviews of stillbirth at a state or territory level are not shared across the country so there is a significant missed opportunity to collectively learn from poor outcomes and make improvements for all Australian families.

Data are also collected differently between the Perinatal Data Collections and the Australian Bureau of statistics and these data systems are completely separate. For example, the data provided by the Australian Bureau of Statistics significantly underestimates the number of stillbirths compared to the reports from the Australian Institute of Health and Welfare (AIHW) which use data collected, usually by midwives, through the state/territory Perinatal Data Collection. This makes it very difficult to use data for improving practice and reducing poor clinical outcomes across Australia.

Inconsistent data collection acts as barriers to collaborative practice and policy development, and ongoing research. This is turn leads to inconsistent policy and standards across Australia, and siloed approach to improvements to practice. The harmonisation of the collection of national perinatal data provides a unique opportunity to collect population level data on a wide range of current healthcare practices. Consideration should be given to broadening this data collection to include other information that may improve clinical outcomes and practice.

Recommendations:

• That the current NMDS be expanded to include information that will be of relevance to policy decisions and improvements to practice eg.
• Intended and actual place of birth
• Smoking status during pregnancy as currently all that is known is smoking status “at first visit.” If the woman claims to have “quit”, she isn’t often followed up therefore data should be collected at the end of the pregnancy and a “resumed smoking” question added (currently only options are quit@_wks, smoking and non-smoking). This will capture effectiveness of quit smoking strategies and true smoking status during pregnancy
• Information about the baby’s father including his (DOB, Ethnicity, Occupation etc)
• That there is greater consistency in collection of data between states and jurisdictions to facilitate national research and knowledge sharing.

1. coordination between Australian and international researchers;

There are already many researchers of international renown who are working in collaboration with Australian midwives and researchers in interdisciplinary teams. One example of this is The Lancet Series: Stillbirths 2016: ending preventable stillbirths ( which included many Australian researchers. Further, the NHMRC funded Centre for Research Excellence in Stillbirth Research (CRE) includes a large number of Australian researchers who collaborate extensively with international researchers.

That being said, the current rate of stillbirth in Australia demonstrates there is much still be done that requires ongoing support and funding. In particular, the ACM would like to see more research into what health system reforms and initiatives will prevent stillbirth, such as Birthing on Country models of care for Aboriginal and Torres Strait Islander women.

Recommendations:

• That funding is provided to take advantage of, and build on, established national and international collaborations to enable ground breaking midwifery research to occur, paying particular attention to the holistic health of women and families, maternity outcomes, impacts on health services.
• All potential interventions to address stillbirth, including changes to education, new models of care for women and the introduction of new technologies, are thoroughly researched to determine potential benefits and harms.

1. partnerships with the corporate sector, including use of innovative new technology;

There are few opportunities for partnerships with the corporate sector, not least because of potential ethical and business conflicts of interest.

Whilst new technology may provide possible solutions to some problems, eg. the use of a phone app to provide information, it is essential that technology is not relied upon to solve the issue of stillbirth. Midwives are concerned that the current level of technology available can be overly relied upon to the detriment of the health of the woman and her unborn baby. For example, cardiotocography (CTG) which electronically monitors babies' heartbeats and wellbeing during labour, was believed to have the ability to reduce/prevent celebral palsy, infant mortality and other neonatal health outcomes. However, over the years it has become obvious that CTG has no impact on outcomes for low-risk women, and is associated with an increase in caesarean sections and instrumental vaginal births which are harmful to women (Alfirevic, Devane , Gyte & Cuthbert, 2017).

The CTG technology was implemented widely in the 1980s with little research into effectiveness (eg. randomised controlled trials). Before long it was standard practice despite the lack of evidence of benefits. This cannot be repeated with other technologies that promise to solve stillbirths.

The ACM believes that focus should be placed on the development of a relationship between midwife and woman during pregnancy in a continuity of midwifery care model, whereby a woman receives care throughout her pregnancy, labour and birth, and postnatal period of six weeks by a known midwife, or a small team of midwives who are known to the woman (ACM, 2017). The trust, respect, consistency of information and support provided within this relationship, all work to improve shared decision-making between midwife and woman. This leads to greater engagement with antenatal care which includes attending more antenatal visits, more disclosure of risk factors that midwives can respond to, greater compliance with professional advice, and reduction of harmful behaviours such as smoking which are known to be stillbirth risk factors. The relationship leads to greater maternal satisfaction with care, compared to standard models of maternity care (Sandall et al. 2016).

Midwifery care that is woman-focused, especially in terms of listening to women, is vital. For example, concerns of the woman about decreased fetal movements are more likely to be understood and followed up in a relationship where woman and midwife know and understand each other, and where both people know and understand what is ‘normal’ for the woman and what is starting to present as ‘abnormal’.

The benefits of this continuous relationship are extended into the postnatal period, when women and families are especially in need of individualised and continuity of care which has been shown to be an essential component of women’s care following stillbirth (Ellis et al. 2016). In the early days following stillbirth, parents are not only grieving but in a state of shock, when they need their care provider to gently and carefully guide and support them as they make immediate and long-term decisions (O’Carroll, 2017).

Recommendations:

• The ACM urge caution in the development of technologies that preference relying on the findings from that technology.
• The ACM advocates “low-tech” solutions includingalways listening to the woman and acting on her concerns, which is facilitated effectively in a continuity of midwifery care model.

1. sustainability and propriety of current research funding into stillbirth, and future funding options, including government, philanthropic and corporate support;

The ACM recommendsthat the Australian Government establish funding opportunities for research into stillbirth, and maternity care in general given that stillbirth rates continue at a noteworthy level, with significant consequences. In particular, research funding must be invested into health system changes especially the implementation of continuity of midwifery care throughout Australia. NumerousAustralian studies have shown that women being providedcontinuity of midwifery care have a reduction in the rate of stillbirths. For example, McLachlan et al., (2012) in the COSMOS randomised trial found a stillbirth rate of 4.4% in the continuity of midwifery care group, compared to 7.9% in the standard care group. Similarly, success in reducing stillbirth with continuity of midwifery care was achieved in the M@NGO RCT where the stillbirth rate was 0.36% with continuity of midwifery care and 0.94% with standard care (Tracey et al, 2013; Tracey et al, 2014).

The 2016 Cochrane review of continuity of midwifery care which examined research both in Australia and overseas demonstrated that 'Women who had midwife-led continuity models of care were less likely to experience...all fetal loss before and after 24 weeks plus neonatal death (average RR 0.84, 95% CI 0.71 to 0.99; participants = 17,561; studies = 13;high quality evidence)' (Sandall et al. 2016, pp.1-2).

Research is also required to look into specific issues, for example, place of birth for women who have experienced a death in-utero, as well as experience of, and support for, midwives and health professionals who care for women and families.

Recommendations:

• That the Commonwealth, through the Council of Australian Governments, allocate funds to drive policy and reform in maternity services, that results in the implementation of research into practice, to improve clinical outcomes and increase quality of care to women.
• Australia look to funding models, namely the National Institute for Health Research, UK, who supports the research of other funders to encourage broader investment in, and economic growth from, all research in health services including that done by midwives.

1. research and education priorities and coordination, including the role that innovation and the private sector can play in stillbirth research and education;

A national approach to research and education is required so that opportunities for innovation and collaboration across Australia are leveraged, and work does not continue in siloes. Research should include women, so their perspectives, experiences and needs are included in research planning, design and implementation (Ellis et al., 2016).

Attention needs to be given to the education of doctors, midwives and other health professionals who work with pregnant women. Education for health professionals should be consistent across jurisdictions, and embedded in pre-and-post registration education programs. For instance, there is a lack in specific stillbirth curriculum in all of the Australian pre-registration midwifery programs, inconsistent approaches to how this material is taught, and how much time is given to it. Further, postgraduate updates and continuing education needs to be reviewed.Better education content and materials will assist health professionals to be both confident and competent when working with the pregnant woman.

Collaboration between health professionals and community groups such as Still Aware should be encouraged so that harmful, mis-information about issues are not perpetrated by health professionals. Looking at the example of fetal movements, health professionals are not always giving women correct information about fetal movements and what decreased fetal movement may mean regarding the health of the baby in utero(Cohen & McClintock, 2017). This may be because health professionals are not aware of the latest evidence-based resources available to them (CRE, 2017).

Recommendations:

• Funding provided for development and delivery of education resources and update opportunities for health professionals, to include everyday communication and evidence based advice. This may need to be a nationally, mandated requirement.
• Pre-registration curricula for health professionals be required to include timededicated to specific information on stillbirth risk, communication of risk to women and families, stillbirth prevention and reduction strategies and appropriate management of care when stillbirth occurs.

1. communication of stillbirth research for Australian families, including culturally and linguistically appropriate advice for Indigenous and multicultural families, before and during a pregnancy;

Health professionals can be reluctant to communicate stillbirth research and advice to Australian families because of the concern about unduly upsetting or worrying them. Mandating this conversation, alongside a compliance audit, has ensured that 95% of pregnant women in Scotland now receive appropriate information, and this strategy has been linked to a 19.5% drop in the stillbirth rate in that country (Draper et al., 2018), Therefore, research and education needs to be resourced so that health professionals feel confident and competent in providing evidence-based information in a culturally appropriate, and understandable way. Further, women need to be actively involved in the development of materials that support communication about stillbirth,so that communication methodologies meets women’s needs. Suffice to say, communication about sensitive subjects such as stillbirth is more easily provided in continuity of care relationships where midwives and women know and trust each other, and conversations can be tailored by midwives to meet individual women’s information requirements.

It is critical for Aboriginal and Torres Strait Islander women to receive information in a culturally appropriate manner, and be supported to follow recommendations such as smoking cessation, not least because rates of stillbirth are significantly higher than non-Aboriginal women (AIHW,2017).Similarly, refugees and migrants are at risk if they are not appropriately supported. Research that focuses on the implementation of midwifery continuity of care models must be funded, such as Birthing on Country (Congress of Aboriginal and Torres Strait Islander Nurses and Midwives (CATSINaM), ACM & CranaPlus, 2017) because of the efficacy of such models of care in reducing stillbirth. It is vital that such research is led using a cultural governance framework, in partnership with Aboriginal and Torres Strait Islander health professionals, health workers, women, researchers and community.

Consumer organisations such as Still Aware and maternity advocacy groups are doing excellent work in not only presenting women’s views to policy makers, but also disseminating evidence-based information related to stillbirth to health professionals and the wider community. However, these organisations are usually volunteer, and rely heavily on donations.

Recommendations:

• Research and education resourced so that health professionals feel confident and competent in providing evidence-based information in a culturally appropriate, and understandable way.
• Research funded for implementation of continuity of care models, such as Birthing on Country, thataddress disparities in healthcare for Aboriginal and Torres Strait Islander women.
• Attention paid to increasing Aboriginal and Torres Strait Islander healthcare work force which includes healthcare workers, midwives and doctors, so that Aboriginal and Torres Strait Islander women always have access to Aboriginal and Torres Strait Islandercarers if they so desire, in maternity services.
• Partnerships with consumer organisations are funded so that they can continue their invaluable work to support women and educate health professionals and policy makers.

1. quantifying the impact of stillbirths on the Australian economy;

There is little research that quantifies the impact of stillbirth on the Australian economy, not least because the impact goes far beyond the few hours a woman is in a hospital giving birth to a baby. The ripple effect spreads out to partner, family, employer, as well as the health professionals who care for the woman. Further that ripple effect can continues for months and years. How economic impact is defined is a subject for research in itself.

Existing research includes the Heazell et al. (2016) review in the 2016 The Lancet series on stillbirth. This research highlighted that stillbirth requires more resources than a livebirth, following the immediate period after the baby’s birth and in subsequent pregnancies where surveillance will be greater. Indirect and intangible costs of stillbirth are wide-ranging and usually families get no help, which is particularly challengingfor those on low or minimum income.

In contrast, there has been significant economic examination of continuity of midwifery care models which demonstrate that continuity of midwifery care is cost effective (Tracy et al., 2013, Toohill et al., 2012).

Recommendation:

• Implementation research is carried out on continuity of care midwifery models because they not only reduce stillbirth rates, but are also known to be cost effective.
• Research carried on the impact of stillbirth on women, families and the wider community.

1. any related matters.

Health professionals who care for women who have stillbirth are impacted and need ongoing support, both in professional education and personal psychological terms. Health professionals experience significant distress and talk about feeling personal and professional isolation, with their experience causing self-doubt and lack of confidence impacting their practice in the future (Nuzum, Meaney & O'donoghue, 2014).