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.     

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.     

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.     

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.     

Stillbirth in Australia 3: Addressing stillbirth inequities in Australia: Steps towards a better future

Persistent disparities in stillbirth risk and care are present in Australia. Eliminating these disparities is possible with a commitment to enhancing and scaling up models of culturally safe maternity care shown to be effective for Aboriginal and Torres Strait Islander women and those of migrant and refugee backgrounds. Campaigns to improve public awareness of stillbirth also play an important role in reducing stillbirth risk and consequences. To achieve reach and impact in communities at risk, messaging needs to be framed around the social and cultural context of women’s lives. Here we describe important initiatives underway within the Stillbirth Centre of Research Excellence to develop a coordinated national approach to stillbirth prevention and care in communities that bear a disproportionate burden of stillbirth.     

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.     

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.     

Stillbirth research: Recruitment barriers and participant feedback

BackgroundPrioritisation of stillbirth research in high-income countries is required to address preventable stillbirth. However, concern is raised by ethics committees, maternity providers and families, when pregnant and bereaved women are approached to participate. Our aim was to 1) assess factors influencing recruitment in a multicentre case-control stillbirth study and 2) gain insight into how women felt about their participation.MethodsEligible women were contacted through maternity providers from seven New Zealand health regions in 2011-2015. Cases had a recent singleton non-anomalous late stillbirth (≥28 weeks’ gestation). Controls were randomly selected and matched for region and gestation. Participants were interviewed by a research midwife and given a feedback form asking their views about participation. Feedback was evaluated using thematic analysis.Results169 (66.5%) of 254 eligible cases and 569 (62.2%) of 915 eligible controls were recruited. Non-participants consisted of 263 (22.5% of eligible) women who declined, 108 (9.2% of eligible) uncontactable women, and 60 (5.1% of eligible) women declined by the maternity provider, with no significant differences between the proportion of non-participating cases and controls in each of these three categories. The majority (63.2%) of women did not provide a specific reason for non-participation. Written feedback was provided by 111 participants (cases 15.3%, controls 14.9%) and all described their involvement positively. Feedback themes identified were ‘motivation to participate,’ ‘ease of participation,’ and ‘post-participation positivity.’ConclusionIdentification of recruitment barriers and our reassuring participant feedback may assist women’s participation in future research and support progress towards stillbirth prevention.     

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.     

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).     

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.     

Understanding staff views and experiences of a clinical practice change to reduce stillbirth in South Asian women: A cross-sectional survey

BackgroundIn July 2017, Victoria’s largest maternity service implemented a new clinical practice guideline to reduce the rates of term stillbirth in women of South Asian background.AimTo capture the views and experiences of clinical staff following the implementation of the new clinical guideline.MethodsCross sectional survey of clinical staff providing maternity care in August 2018, 12 months post implementation. Staff were asked to provide their agreement with ten statements assessing: perceived need for the guideline, implementation processes, guideline clarity, and clinical application. Open-ended questions provided opportunities to express concerns and offer suggestions for improvement. The frequency of responses to each question were tabulated. Open ended responses were grouped together to identify themes.FindingsA total of 120 staff completed the survey, most (n = 89, 74%) of whom were midwives. Most staff thought the rationale (n = 95, 79%), the criteria for whom they applied (83%, n = 99), and the procedures and instructions within the guideline were clear (74%, n = 89). Staff reported an increase in workload (72%, n = 86) and expressed concerns related to rationale and evaluation of the guidelines, lack of education for both staff and pregnant South Asian women, increased workload and insufficient resources, patient safety and access to care. Challenges relating to shared decision making and communicating with women whose first language is not English were also identified.DiscussionThis study has identified key barriers to and opportunities for improving implementation and highlighted additional challenges relating to new clinical guidelines which focus on culturally and linguistically diverse women.     

欧盟对失业采取的预防和激励政策分析

对失业人员采取预防和激励政策是欧盟共同就业策略的核心内容,1998年以来,欧盟成员国在实施积极的劳动力政策和改革预防与激励政策方面有很大的进展,特别是在加强公共就业部门的现代化改革方面成绩显著。这一策略的实施给各成员国在不同程度上带来了积极的影响。     

Exploring the impact of healthcare workers communication with women who have experienced stillbirth in Malawi,Tanzania and Zambia. A grounded theory study

BackgroundCommunication and interaction with healthcare workers at the time of stillbirth remain in parents’ long-term memories and impact on emotional and psychological well-being. Cultural attitudes and norms influence how stillbirth is acknowledged and discussed in society. There is limited evidence on how women from sub-Saharan Africa became aware of the death of their babies. This research explored how women perceived the approach adopted by healthcare workers when the news of their stillbirth was disclosed to them.MethodsGrounded theory study. Women (n = 33) who had birthed a stillborn baby in the preceding 12 months were purposively sampled and participated in in-depth interviews (9 in Zambia, 16 in Tanzania and 8 in Malawi). Informed consent was gained from all participants. Data were analysed via a coding process using constant comparative analysis.FindingsWomen sacrificed individualized and personal grieving strategies to conform and behave according to what was expected within their community. An overarching theme of cultural conformity overrides personal grief incorporated four sub-themes: perceiving something was wrong, the unexpected outcome, experience contrasting emotions, bonding with the baby.Discussion and conclusionsMost participants embarked on a negative ‘emotion work’ to adapt and suppress emotions and grief due to cultural expectations. Inability to voice the trauma of losing a baby may lead to perinatal mental health issues and needs addressing. Maternity healthcare workers should encourage women to express their feelings and grief. Appropriate training in perinatal bereavement care including good communication, appropriate attitudes and provision of meaningful information to grieving women is recommended.     

Midwifery-led care in South Australia: Looking back to move forward

BackgroundFrom the 1980s to the turn of the century, Australia saw an evolution of midwifery-led models of care, in part due to legislative reform and federal funding, but largely owing to the efforts of strong midwifery leaders and consumers who rallied for the implementation of alternative models of care. Through persistence and extensive collaboration, the first South Australian birth centres were established.AimTo better understand the evolution of midwifery-led care in South Australia and identify the drivers and impediments to inform the upscaling of midwifery models into the future.MethodsSemi-structured interviews were conducted with ten midwifery leaders and/or those instrumental in setting up birth centres and midwifery-led care in South Australia. Data was analysed using thematic analysis.FindingsThree overarching themes and several sub-themes were identified, these included: ‘Midwifery suffragettes’ which explored ‘activism’, ‘adversity’ and ‘advocacy’; ‘Building bridges’ captured the importance of ‘gathering midwives’, a ‘movement of women’ and ‘champions and influencers’; and ‘Recognising midwifery’ identified the strong ‘sense of identity’ needed to outface ‘ignorance and opposition’ and the importance of ‘role reformation’.ConclusionThese midwifery leaders provide insight into an era of change in the history of midwifery in South Australia and contribute valuable learnings. In order to move forward, midwives must continue to embrace the political nature of midwifery, enact authentic, transformational leadership and engage women across all levels of influence. It is critical that midwives pursue equity in professional recognition, work collaboratively to provide quality, woman-centred maternity care and expand midwifery continuity of care models.     

Masculinities and sexualities in sport and physical cultures: three decades of evolving research

This article traces the foundation of the study between sport and physical cultures and masculinities and sexualities principally by examining the homophobic zeitgeist by which the academic discipline was formed. I show that the intense homophobia of the mid-1980s waned throughout the 1990s, and that during the new millennia, researchers found more inclusive forms of heterosexuality. Indeed, research on masculinities and homophobia today shows that, even in the traditionally conservative institution of sport, matters have shifted dramatically. This has resulted not only in improved conditions for sexual minorities, but it has also promoted a culture of softer, more tactile and emotional forms of heterosexual masculinities. These studies, alongside those within this special issue of the Journal of Homosexuality, highlight the necessity of developing new ways of theorizing the changing dynamics between masculinities, sexualities, and physical cultures in the next decade.     

The BLOSSoM study: Burnout after perinatal LOSS in Midwifery. Results of a nation-wide investigation in Italy

BackgroundRespectful care of bereaved parents after stillbirth plays a pivotal role in enabling the grieving process and reducing the traumatic impact of this life-changing event. Unfortunately, professionals and midwives, in particular, are often emotionally unprepared and frequently left alone when dealing with these stressful events.AimThe BLOSSoM (Burnout after perinatal LOSS in Midwifery) study aims to address the levels of professional burnout in Italian midwives and evaluate the psychological impact of bereavement care on professionals.MethodsWeb-based cross-sectional study, including socio-demographic questionnaire, survey on the knowledge of guidelines for stillbirth management and two psychometric tests: Maslach Burnout Inventory (MBI) and Impact of Event Scale - Revised (IES-R).FindingsOf 445 female midwives, mean age 35.1 (SD 9.9), working years 11.2 (SD 10.2), 149 (33.4%) reported specific training on stillbirth and 420 (94.6%) highlighted the need for further training and support. Medium to high levels of burnout (Emotional Exhaustion) were present in 65 midwives (15.9%) with a high prevalence of Reduced Personal Accomplishment (292, 64.2%). ‘Communicating the diagnosis of death’ was considered the hardest task, followed by ‘assisting the meeting with the baby’; 109 midwives (24.5%) reported high IES-R scores (>30), suggesting symptoms of PTSD related to stillbirth events; a good level of knowledge of guidelines favoured Personal Accomplishment (OR 0.3 [0.1 – 0.6]). The number of stillbirths assisted by midwives was not associated with burnout levels.ConclusionMidwives are particularly at risk of developing professional burnout, as early as after five years of work, with a significant association with the psychological impact exerted by stressful events (stillbirth).     

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.

Born in another country: Women's experience of labour and birth in Queensland,Australia

BackgroundWomen born outside Australia make up more than a fifth of the Queensland birthing population and like migrants in other parts of the world face the challenges of cultural dislocation and possible language barriers. Recognising that labour and birth are major life events the aim was to investigate the experiences of these women in comparison to native-born English speaking women.MethodsSecondary analysis of data from a population based survey of women who had recently birthed in Queensland. Self-reported clinical outcomes and quality of interpersonal care of 481 women born outside Australia who spoke a language other than English at home were compared with those of 5569 Australian born women speaking only English.ResultsAfter adjustment for demographic factors and type of birthing facility, women born in another country were less likely to be induced, but more likely to have constant electronic fetal monitoring (EFM), to give birth lying on their back or side, and to have an episiotomy. Most women felt that they were treated as an individual and with kindness and respect. However, women born outside Australia were less likely to report being looked after ‘very well’ during labour and birth and to be more critical of some aspects of care.ConclusionIn comparing the labour and birth experiences of women born outside the country who spoke another language with native-born English speaking women, the present study presents a largely positive picture. However, there were some marked differences in both clinical and interpersonal aspects of care.