Stillbirth in Australia 1: The road to now: Two decades of stillbirth research and advocacy in Australia

Stillbirth is a major public health problem with an enormous mortality burden and psychosocial impact on parents, families and the wider community both globally and in Australia. In 2015, Australia’s late gestation stillbirth rate was over 30% higher than that of the best-performing countries globally, highlighting the urgent need for action. We present an overview of the foundations which led to the establishment of Australia’s NHMRC Centre of Research Excellence in Stillbirth (Stillbirth CRE) in 2017 and highlight key activities in the following areas: Opportunities to expand and improve collaborations between research teams; Supporting the conduct and development of innovative, high quality, collaborative research that incorporates a strong parent voice; Promoting effective translation of research into health policy and/or practice; and the Regional and global work of the Stillbirth CRE. We highlight the first-ever Senate Inquiry into Stillbirth in Australia in 2018. These events ultimately led to the development of a National Stillbirth Action and Implementation Plan for Australia with the aims of reducing stillbirth rates by 20% over the next five years, reducing the disparity in stillbirth rates between advantaged and disadvantaged communities, and improving care for all families who experience this loss.     

Stillbirth in Australia 4: Breaking the Silence: Amplifying 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.     

Understanding pathways leading to stillbirth: The role of care-seeking and care received during pregnancy and childbirth in Kabul province,Afghanistan

BackgroundThe underlying pathways leading to stillbirth in low- and middle-income countries are not well understood. Context-specific understanding of how and why stillbirths occur is needed to prioritise interventions and identify barriers to their effective implementation and uptake.AimTo explore the contribution of contextual, individual, household-level and health system factors to stillbirth in Afghanistan.MethodsUsing a qualitative approach, we conducted semi-structured in-depth interviews with women and men that experienced stillbirth, female elders, community health workers, healthcare providers, and government officials in Kabul province, Afghanistan between October-November 2017. We used thematic analysis to identify contributing factors and developed a conceptual map describing possible pathways to stillbirth.FindingsWe found that low utilisation and access to healthcare was a key contributing factor, as were unmanaged conditions in pregnancy that increased women’s risk of complications and stillbirth. Sociocultural factors related to the treatment of women and perceptions about medical interventions deprived women of interventions that could potentially prevent stillbirth. The quality of care from public and private providers during pregnancy and childbirth was a recurring concern exacerbated by health system constraints that led to unnecessary delays; while environmental factors linked to the ongoing conflict were also perceived to contribute to stillbirth. These pathways were underscored by social, cultural, economic factors and individual perceptions that contributed to the three-delays.DiscussionEfforts are needed at the community-level to facilitate care-seeking and raise awareness of stillbirth risk factors and the facility-level to strengthen antenatal and childbirth care quality, ensure culturally appropriate and respectful care, and reduce treatment delays.     

Breaking through the silence in antenatal care: Fetal movement and stillbirth education

BackgroundFetal movements are a key indicator of fetal health. Research has established significant correlations between altered fetal activity and stillbirth. However, women are generally unaware of this relationship. Providing pregnant women with information about the importance of fetal movements could improve stillbirth rates. However, there are no consistent fetal movements awareness messages globally for pregnant women.AimsThis study aimed to explore the antenatal care experiences of Australian mothers who had recently had a live birth to determine their knowledge of fetal movements, the nature and source of that information.MethodsAn online survey method was used for 428 women who had a live birth and received antenatal care in Australia. Women’s knowledge of fetal movements, stillbirth risk, and the sources of this knowledge was explored.FindingsA large proportion of participants (84.6%; n = 362) stated they had been informed by health care professionals of the importance of fetal movements during pregnancy. Open-ended responses indicate that fetal movements messages are often myth based. Awareness that stillbirth occurs was high (95.2%; n = 398), although, 65% (n = 272) were unable to identify the current incidence of stillbirth in Australia.ConclusionWomen who received antenatal care have high-awareness of fetal movements, but the information they received was inconsistent. Participants knew stillbirth occurred but did not generally indicate they had obtained that knowledge from health care professionals. We recommend a consistent approach to fetal movements messaging throughout pregnancy which focuses on stillbirth prevention.     

Stillbirth in Australia 5: Making respectful care after stillbirth a reality: The quest for parent-centred care

Stillbirth is a tragedy that can leave parents feeling powerless and vulnerable. Respectful and supportive bereavement care is essential to reducing adverse psychosocial impact. Initiatives of the Australian Centre of Research Excellence in Stillbirth are designed to improve care after stillbirth. At their heart are the voices of perinatally bereaved parents and support organisations and shared decision making between parents and health care providers. Priorities in future perinatal bereavement care research include ensuring appropriate care for population groups who experience higher rates of stillbirth and addressing implementation challenges to best practice in respectful and supportive bereavement care within our health systems.     

Knowing your audience: Investigating stillbirth knowledge and perceptions in the general population to inform future public health campaigns

BackgroundThe prevalence of stillbirth in many high income countries like Australia has remained unchanged for over 30 years. The 2018 Australian government Senate Select Committee on Stillbirth Research and Education highlighted the need for a public health campaign to encourage public conversations and increase awareness. However, there is little evidence about the community’s knowledge and perceptions towards pregnancy and stillbirth, nor their aspirations for a public health campaign.AimsTo assess the general knowledge, perceptions, myths and attitudes towards stillbirth to inform future public health campaigns.MethodsAustralian participants (n = 344; predominately women n = 294 (85.5%)) were recruited via Facebook.com. They completed a cross-sectional online survey designed to assess their knowledge of pregnancy and stillbirth, with additional questions on socio-demographic characteristics.ResultsStillbirth knowledge and awareness of incidence was low in this sample. Prominent myths, such as baby runs out of room in the uterus (n = 112, 33%) and baby slows down when preparing for labour (n = 24, 27%) were endorsed. Only 25% (n = 85) knew the prevalence of stillbirth in Australia (six per day). Almost two-thirds (n = 205; 62%) agreed that there needs to be a public health campaign, however one in five (n = 65; 20%) were concerned that talking about stillbirth with pregnant women may cause them to worry.Discussion and conclusionOur findings reinforce the need for a targeted campaign, which educates the general population about the definition and prevalence of stillbirth, stillbirth risks and modifiable health behaviours. Appropriate messaging should target pregnant women during antenatal care as well as their support and care systems (family, friends, and care providers).     

Racial disparities in birth care: Exploring the perceived role of African-American women providing midwifery care and birth support in the United States

Background

Midwifery care has been linked to positive birth outcomes. Despite the broad racial disparities in maternal and infant outcomes in the United States (US), little is known about the role of minority women in either providing or receiving this type of care. A vibrant community of minority women, who self-identify as providing these services, exists online. In this exploratory study we ask how they describe their role; view their practice; and position themselves in the broader discussions of racial health disparities in the US.

Midwifery continuity of care for women with complex pregnancies in Australia: An integrative review

BackgroundAll women require access to quality maternity care. Continuity of midwifery care can enhance women’s experiences of childbearing and is associated with positive outcomes for women and infants. Much research on these models has been conducted with women with uncomplicated pregnancies; less is known about outcomes for women with complexities.AimTo explore the outcomes and experiences for women with complex pregnancies receiving midwifery continuity of care in Australia.MethodsThis integrative review used Whittemore and Knafl’s approach. Authors searched five electronic databases (PubMed/MEDLINE, EMBASE, CINAHL, Scopus, and MAG Online) and assessed the quality of relevant studies using the Critical Appraisal Skills Programme (CASP) appraisal tools.FindingsFourteen studies including women with different levels of obstetric risk were identified. However, only three reported outcomes separately for women categorised as either moderate or high risk. Perinatal outcomes reported included mode of birth, intervention rates, blood loss, perineal trauma, preterm birth, admission to special care and breastfeeding rates. Findings were synthesised into three themes: ‘Contributing to safe processes and outcomes’, ‘Building relational trust’, and ‘Collaborating and communicating’. This review demonstrated that women with complexities in midwifery continuity of care models had positive experiences and outcomes, consistent with findings about low risk women.DiscussionThe nascency of the research on midwifery continuity of care for women with complex pregnancies in Australia is limited, reflecting the relative dearth of these models in practice.ConclusionDespite favourable findings, further research on outcomes for women of all risk is needed to support the expansion of midwifery continuity of care.     

Caring for families experiencing stillbirth: Evidence-based guidance for maternity care providers

BackgroundEvidence-based guidance is needed to inform care provided to mothers and families who experience stillbirth. This paper focuses upon how meaningful and culturally appropriate care can be provided to mothers and families from when they are informed that their baby will be stillborn to many years after the experience. Avoidable suffering may be occurring in the clinical setting.AimsTo promote and inform meaningful and culturally appropriate evidence-informed practice amongst maternity care providers caring for mothers and families who experience stillbirth.MethodsA comprehensive systematic review was conducted which primarily synthesised relevant qualitative research studies. An expert advisory group comprised of stillbirth researchers, clinicians, and parents who have experienced stillbirth provided guidance for the review and the development of implications for practice.FindingsGrieving parents want staff to demonstrate sensitivity and empathy, validate their emotions, provide clear, information, and be aware that the timing of information may be distressing. Parents want support and guidance when making decisions about seeing and holding their baby. Sensitivity, respect, collaboration, and information are essential throughout the experience of stillbirth. Culturally appropriate care is important and may require staff to accommodate different cultural practices.ConclusionThe findings of the review and expert consensus inform the provision of meaningful and culturally appropriate care for mothers and families that have experienced stillbirth. Evidence informed implications for practice are provided to guide the actions, communication, and behaviours of maternity care providers.     

Stillbirth in Australia 6: The future of stillbirth research and education

The first five papers in the Stillbirths in Australia series have described the current state of stillbirth research and education in Australia, as well as the national approach being adopted to prevention. This final paper in the series asks ‘where to from here?’. What does the next 5–10 years hold for those of us working in this field and how much more can be achieved? There are signs that we are moving in the right direction with a national prevention program about to rollout to add to the gains of the last two decades, and evidence of a more consistent approach to bereavement care. However, we must sharpen our equity lens and ensure that all groups are included in these efforts.     

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

BackgroundEvery 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.AimThis study aimed to explore the stigma experiences of bereaved parents who have endured a stillbirth.MethodsAn online survey of closed and open-questions with 817 participants (n = 796 female; n = 17 male) was conducted in high-income countries.FindingsBased 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.ConclusionBereaved 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.     

Women's access needs in maternity care in rural Tasmania,Australia: A mixed methods study

ObjectivesThis study investigates (i) maternity care access issues in rural Tasmania, (ii) rural women's challenges in accessing maternity services and (iii) rural women's access needs in maternity services.MethodsA mixed-method approach using a survey and semi-structured interviews was conducted. The survey explored women's views of rural maternity services from antenatal to postnatal care, while interviews reinforced the survey results and provided insights into the access issues and needs of women in maternity care.FindingsThe survey was completed by n = 210 women, with a response rate of 35%, with n = 22 follow-up interviews being conducted. The survey indicated the majority of rural women believed antenatal education and check-ups and postnatal check-ups should be provided locally. The majority of women surveyed also believed in the importance of having a maternity unit in the local hospital, which was further iterated and clarified within the interviews. Three main themes emerged from the interview data, namely (i) lack of access to maternity services, (ii) difficulties in accessing maternity services, and (iii) rural women's access needs.ConclusionThe study suggested that women's access needs are not fully met in some rural areas of Tasmania. Rural women face many challenges when accessing maternity services, including financial burden and risk of labouring en route. The study supports the claim that the closure of rural maternity units shifts cost and risk from the health care system to rural women and their families.     

Facilitators and barriers to substance-free pregnancies in high-income countries: A meta-synthesis of qualitative research

BackgroundPrevious studies have associated substance use (alcohol, illicit drugs and smoking) to negative pregnancy outcomes, including higher risk of stillbirth.AimThis study aims to identify facilitators and barriers reported by women to remain substance free during pregnancy.MethodsA systematic search was conducted in six databases from inception to March 2019 and updated in November 2020. Qualitative studies involving pregnant or post-partum women, from high-income countries, examining women’s experiences of substance use during pregnancy were eligible. Meta-ethnography was used to facilitate this meta-synthesis.FindingsTwenty-two studies were included for analysis. Internal barriers included the perceived emotional and social benefits of using substances such as stress coping, and the associated feelings of shame and guilt. Finding insensitive professionals, the lack of information and discussion about risks, and lack of social support were identified as external barriers. Furthermore, the social stigma and fear of prosecution associated with substance use led some women to conceal their use. Facilitators included awareness of the health risks of substance use, having intrinsic incentives and finding support in family, friends and professionals.DiscussionPerceived benefits, knowledge, experiences in health care settings, and social factors all play important roles in women’s behaviours. These factors can co-occur and must be considered together to be able to understand the complexity of prenatal substance use.ConclusionIncreased clinical and community awareness of the modifiable risk factors associated with substance use during pregnancy presented in this study, is necessary to inform future prevention efforts.     

‘It requires something drastic’: Interviews with health care leaders about organisational responses to social disadvantage

ProblemPersisting disparities in maternal and child health outcomes in high income countries require new insights for health service response.BackgroundSignificant social hardship, including factors related to migration, are associated with perinatal morbidity and mortality. The universality of maternity and child health care offers opportunities to reduce health disparities. Process evaluation of health service initiatives to address refugee health inequalities in Melbourne, Australia, is the setting for the study.AimTo explore the views of health service leaders about health system and service capacity to tailor care to address social adversity and reduce disparities in maternal and child health outcomes.MethodsIn-depth interviews with leaders of maternity and maternal and child health services with questions guided by a diagram to promote discussion. Thematic analysis of transcribed interviews.FindingsHealth care leaders recognised the level of social complexity and diversity of their clientele. The analysis revealed three key themes: grappling with the complexity of social disadvantage; ‘clinical risk’ versus ‘social risk’; and taking steps for system change.DiscussionPriority given to clinical requirements and routine practices together with the rising demand for services is limiting service response to families experiencing social hardship and hampering individualised care. System change was considered possible only if health service decision makers engaged with consumer and community perspectives and that of front-line staff.ConclusionAchieving equity in maternal and child health outcomes requires engagement of all key stakeholders (communities, clinicians, managers) to facilitate effective system re-design.     

Race Disparities in Pubertal Timing: Implications for Cardiovascular Disease Risk Among African American Women

Compared to white girls, sexual maturation is accelerated in African American girls as measured by indicators of pubertal development, including age at first menses. Increasing epidemiological evidence suggests that the timing of pubertal development may have strong implications for cardio-metabolic health in adolescence and adulthood. In fact, younger menarcheal age has been related prospectively to poorer cardiovascular risk factor profiles, a worsening of these profiles over time, and an increase in risk for cardiovascular events, including non-fatal incident cardiovascular disease and cardiovascular-specific and all-cause mortality. Yet, because this literature has been limited almost exclusively to white girls/women, whether this same association is present among African American girls/women has not been clarified. In the current narrative review, the well-established vulnerability of African American girls to experience earlier pubertal onset is discussed as are findings from literatures examining the health outcomes of earlier pubertal timing and its antecedents, including early life adversity exposures often experienced disproportionately in African American girls. Gaps in these literatures are highlighted especially with respect to the paucity of research among minority girls/women, and a conceptual framework is posited suggesting disparities in pubertal timing between African American and white girls may partially contribute to well-established disparities in adulthood risk for cardio-metabolic disease between African American and white women. Future research in these areas may point to novel areas for intervention in preventing or lessening the heightened cardio-metabolic risk among African American women, an important public health objective.     

Stillbirth in Australia 2: Working together to reduce stillbirth in Australia: The Safer Baby Bundle initiative

The rate of late gestation stillbirth in Australia is unacceptably high. Up to one third of stillbirths are preventable, particularly beyond 28 weeks’ gestation. The aim of this second paper in the Stillbirth in Australia series is to highlight one key national initiative, the Safer Baby Bundle (SBB), which has been led by the Centre of Research Excellence in Stillbirth in partnership with state health departments. Addressing commonly identified evidence practice gaps, the SBB contains five elements that, when implemented together, should result in better outcomes than if performed individually. This paper describes the development of the SBB, what the initiative aims to achieve, and progress to date. By collaborating with Departments of Health and other partners to amplify uptake of the SBB, we anticipate a reduction of at least 20% in Australia’s stillbirth rate after 28 weeks’ gestation is achievable.     

Maternity health care: The experiences of Sub-Saharan African women in Sub-Saharan Africa and Australia

Background

Increasing global migration is resulting in a culturally diverse population in the receiving countries. In Australia, it is estimated that at least four thousand Sub-Saharan African women give birth each year. To respond appropriately to the needs of these women, it is important to understand their experiences of maternity care.

Women's satisfaction with antenatal care: Comparing women in Sweden and Australia

BackgroundSatisfaction with antenatal care could differ depending on the organisation and the context of care.AimTo compare antenatal care in Australia and Sweden, to identify deficiencies in the content of antenatal care and what aspects contributed most in dissatisfaction with antenatal care.MethodsA longitudinal survey of 123 Australian and 386 Swedish women recruited during one year in regional hospitals in Sweden and Australia. Data collected by three questionnaires.ResultsWomen in Australia had more antenatal visits, less continuity of midwife caregiver but were more satisfied with antenatal education and the emotional aspects of antenatal care. Although the overall satisfaction was high, deficiencies were found in more than half of the studied variables in the content of care. Women in Sweden were more dissatisfied with information about labour and birth (OR 3.1; 1.8–5.3) and information about the time following birth (OR 3.8; 2.2–6.3), but more satisfied with the involvement of the father (OR 0.3; 0.2–0.6). Factors that contributed most to dissatisfaction with antenatal care overall were deficiency in information about pregnancy related issues (OR 3.4; 1.3–8.7) and not being taken seriously by the midwife (OR 4.1; 1.6–10.1).ConclusionSatisfaction with antenatal care was high in both groups of women. Australian women were more satisfied than the Swedish women with the emotional aspects of care. Deficiencies were found in more than half of the variables measured relating to the specific aspects of care. Lack of information and not being treated seriously were important factors for not being satisfied.