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.     

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.     

Australian women’s perceptions and practice of sleep position in late pregnancy: An online survey

BackgroundGoing-to-sleep in the supine position in later pregnancy (≥28 weeks) has been identified as a risk factor for stillbirth. Internationally, public awareness campaigns have been undertaken encouraging women to sleep on their side during late pregnancy.AimThis study aimed to identify sleep practices, attitudes and knowledge in pregnant women, to inform an Australian safe sleeping campaign.MethodsA web-based survey of pregnant women ≥28 weeks’ gestation conducted from November 2017 to January 2018. The survey was adapted from international sleep surveys and disseminated via pregnancy websites and social media platforms.FindingsThree hundred and fifty-two women participated. Five (1.6%) reported going to sleep in the supine position. Most (87.8%) had received information on the importance of side-sleeping in pregnancy. Information was received from a variety of sources including maternity care providers (186; 66.2%) and the internet (177; 63.0%). Women were more likely to report going to sleep on their side if they had received advice to do so (OR 2.3; 95% CI 1.0–5.1). Thirteen (10.8%) reported receiving unsafe advice, including changing their going-to-sleep position to the supine position.DiscussionThis indicates high level awareness and practice of safe late-pregnancy going-to-sleep position in participants. Opportunities remain for improvement in the information provided, and understanding needs of specific groups including Aboriginal and Torres Strait Islander women.ConclusionFindings suggest Australian women understand the importance of sleeping position in late pregnancy. Inconsistencies in information provided remain and may be addressed through public awareness campaigns targeting women and their care providers.     

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.     

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.     

Who is holding the baby? Women's experiences of contact with their baby immediately after birth: An Australian population-based survey

BackgroundSeeing and holding their baby immediately after the birth is the pinnacle of the childbearing process for parents. Few studies have examined women's experiences of seeing and holding their baby immediately after birth. We investigated women's experiences of initial contact with their newborns using data from an Australian population-based survey.MethodsAll women who gave birth in September/October in 2007 in two Australian states were mailed questionnaires six months following the birth. Women were asked three questions about early newborn contact including where their baby was held in the first hour after birth and whether they were able to hold their baby as soon and for as long as they liked. We examined the association between model of maternity care and early newborn contact stratified by admission to SCN/NICU.ResultsThe majority (92%) of women whose babies remained with them reported holding their babies as soon and for as long as they liked in the first hour after birth. However, for women whose babies were admitted to SCN/NICU only a minority (47%) reported this. Women in public models of care (with the exception of primary midwifery care) whose babies remained with them were less likely to report holding their babies as soon and for as long as they liked compared to women in private care.ConclusionOur findings suggest that there is potential to increase the proportion of mothers and fathers who get to hold their baby immediately after the birth by modifying birth suite and operating room practices.     

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.     

‘There is trauma all round’: A qualitative study of health workers’ experiences of caring for parents after stillbirth in Kenya and Uganda

BackgroundStillbirth is a traumatic life-event for parents. Compassionate care from health workers supports grief and adjustment, alleviating psychological distress and minimising serious adverse health and social consequences. Bereavement support in facilities in LMICs, including in sub-Saharan Africa, often fails to meet parents’ needs. However, very few studies have explored health worker’s experiences in these settings.AimTo explore the lived experiences of midwives, doctors and others, caring for women after stillbirth in Kenya and Uganda.MethodsQualitative, guided by Heideggerian phenomenology. Sixty-one health workers, including nurse-midwives (N = 37), midwives (N = 12) and doctors (N = 10), working in five facilities in Kenya and Uganda, were interviewed. Data were analysed following Van Manen’s reflexive approach.ResultsThree main themes summarised participants’ experiences: ‘In the mud and you learn to swim in it’ reflected a perceived of lack of preparation; skills were gained through experience and often without adequate support. The emotional and psychological impacts including sadness, frustration, guilt and shame were summarised in ‘It’s bad, it’s a sad experience’. Deficiencies in organisational culture and support, which entrenched blame, fear and negative behaviours were encapsulated in Nobody asks ‘how are you doing?’.ConclusionHealth workers in Kenya and Uganda were deeply sensitive to the impacts of stillbirth for women and families, and often profoundly and personally affected. Care and psychological support were acknowledged as often inadequate. Interventions to support improved bereavement care in sub-Saharan Africa need to target increasing health worker knowledge and awareness and also embed supportive organisational cultures and processes.     

Midwives’ experiences of using the Mindfetalness method when talking with pregnant women about fetal movements

BackgroundInformation given to pregnant women about fetal movements is important in maternity care and decreased fetal movements is associated with fetal growth restriction and stillbirth. The fetal movement pattern is different for every fetus and women perceive different types of movements. Mindfetalness is a self-assessment method for a woman to use to become familiar with her unborn baby’s fetal movement pattern.AimWe aimed to explore midwives’ perceptions about informing pregnant women about fetal movements and their experiences of working with Mindfetalness in their daily work.MethodsA web-questionnaire was distributed to midwives who participated in a randomized controlled trial evaluating Mindfetalness, a method for the observation of fetal movements. In total, 67 maternity clinics in Stockholm, Sweden, were randomized to Mindfetalness or routine care. Of the 144 midwives working in maternity clinics randomized to Mindfetalness, 80% answered the questionnaire.FindingsThe midwives thought that the leaflet about Mindfetalness was supportive in their work when informing women about fetal movements and the majority wanted to continue to distribute the leaflet when the trial ended. The midwives also expressed that the study increased their own knowledge about fetal movements. Women embraced the information about Mindfetalness positively and appreciated the written material. The midwives thought that talking about fetal movements in maternity care is an important but challenging task.ConclusionMindfetalness is a useful tool to use in maternity clinics when informing pregnant women about fetal movements. The written information was appreciated by both pregnant women and midwives.     

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).     

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.     

Clinical practice guidelines for perinatal bereavement care — An overview

BackgroundHigh quality perinatal bereavement care is critical for women and families following stillbirth or newborn death. It is a challenging area of practice and a difficult area for guideline development due to a sparse and disparate evidence base.AimWe present an overview of the newly updated Perinatal Society of Australia and New Zealand/Stillbirth Centre of Research Excellence guideline for perinatal bereavement care. The guideline aims to provide clear guidance for maternity health care providers and their services to support the provision of care that meets the needs of bereaved parents.DiscussionThe Guideline for Respectful and Supportive Perinatal Bereavement Care is underpinned by a review of current research combined with extensive stakeholder consultation that included parents and their organisations and clinicians from a variety of disciplines. The Guideline contains 49 recommendations that reflect five fundamental goals of care: good communication; shared decision-making; recognition of parenthood; effective support; and organisational response.ConclusionBest available research, parents’ lived experiences and maternity care providers’ insights have contributed to a set of implementable recommendations that address the needs of bereaved parents.     

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.     

Trying to conceive: An interpretive phenomenological analysis of couples’ experiences of pregnancy after stillbirth

ObjectiveStillbirth affects 1:200 pregnancies in high income countries. Most women are pregnant again within 12 months. Little is known about how couples negotiate a subsequent pregnancy. This paper presents findings from a study exploring the experiences of couples’ in pregnancy after stillbirth.MethodsQualitative, interpretive phenomenological analysis was used to conduct in-depth interviews with eight heterosexual couples in the immediate pregnancy after stillbirth. Couples were interviewed together to explore their dyadic, lived experiences of stillbirth and the pregnancy that follows.ResultsHoping for a born alive baby was one superordinate theme and Trying to conceive one of its subordinate themes, is presented here. Couples jointly negotiated their decision to get pregnant again, varying upon their individual circumstances, including their experiences of stillbirth. Gender differences were apparent in a couple’s agreement to pursue a pregnancy after stillbirth and may be explained by the desire of men to fully parent the baby who died before reaching a decision about a subsequent pregnancy. Sexual intercourse often became less about emotional connection and more about a means to achieve a pregnancy.ConclusionCouples spoke of the need for each partner to be in agreement with the decision for a pregnancy. The experiences of trying to conceive after stillbirth impacted the couple relationships. Couples who were able to discuss their feelings with one another appeared more cohesive than those who experienced communication challenges in the aftermath of loss. New insights into men’s thinking about the decision to get pregnant after stillbirth were revealed.     

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.     

Understanding stillbirth stigma: A scoping literature review

BackgroundThe World Health Organization, and the 2011 and 2016 Lancet Stillbirth series as well as medical and scientific literature, have all called for stillbirth stigma to be reduced. However, few studies have explored or attempted to conceptualise the meaning of stigma in the context of stillbirth.AimTo explore the current knowledge surrounding stillbirth stigma, specifically the extent, type and experiences of bereaved parents.MethodsA five-stage scoping review framework was utilised. A search of relevant databases (MedLine, EMBASE, PsychInfo, PsychArticles, and Ovid Emcare) was undertaken with several key words related to ‘stillbirth’ and ‘stigma.’ The reference lists of included studies were also searched.FindingsA total of 23 resources met the inclusion criteria for this review. A thematic analysis regarding how stigma was conceptualised and/or experienced within results and/or discussion was employed on these studies. Five over-arching themes, with several sub-themes, were discovered: Type of stigma, identity, silence, bereaved mothers’ experiences of stigma in low-income countries and transformation.DiscussionStillbirth stigma remains an under-researched topic. Few articles conceptualised the experiences of the bereaved parent within a stigma framework. However, examples of bereaved parents enduring stigma were found within the literature. Common stigmatising experiences included, bereaved parents’ identities being challenged; and feelings of shame, guilt, and blame after their stillbirth. Stigmatising experiences could be different based on the bereaved parent’s cultural background.ConclusionFurther research which attempts to conceptualise stillbirth stigma and explores those experiences from a bereaved parent perspective is needed to help inform stigma reduction strategies.     

Honesty and comfort levels in mothers when screened for perinatal depression and anxiety

PurposeTo evaluate the degree of honesty and level of comfort reported by women when questioned about their emotional wellbeing during the perinatal period; to investigate if honesty and comfort are associated with perinatal depression or perinatal anxiety; and to examine the reasons why women may not always respond honestly.MethodsQualitative and quantitative data from 1597 women from the cross-sectional perinatal mental health substudy (part of the Australian Longitudinal Study on Women’s Health) were analysed using a mixed methods approach.ResultsWhen questioned by their health practitioner about their emotional wellbeing in the perinatal period, 20.7% of women indicated they had not always responded honestly. Reasons for not being honest reflected four main themes: normalizing of symptoms/coping; negative perceptions (self-and others); fear of adverse repercussions; and fear of involvement of health services (trust and confidentiality). The 38.9% of women who did not feel comfortable when questioned by their health practitioner about their emotional wellbeing were four times more likely to report perinatal depression (odds ratio = 4.09; 95% confidence interval = 2.55, 6.57) and nearly twice as likely to report perinatal anxiety (odds ratio = 1.90; 95% confidence interval = 1.24, 2.94) than other women.ConclusionsWomen who are most likely to need mental health care during the perinatal period are also those least likely to be honest about their mental health. A non-judgemental, open and reassuring approach by clinicians may help to reduce the stigma and fears contributing to lack of honest responses, and improve early diagnosis and treatment of mental health problems.     

Quantifying the differences in birth outcomes and out-of-pocket costs between Australian Defence Force servicewomen and civilian women: A data linkage study

ObjectivesServicewomen in Defence Forces the world over are constrained in their health service use by defence healthcare policy. These policies govern a woman’s ability to choose who she receives maternity care from and where. The aim of this study was to compare Australian Defence Force (ADF) servicewomen and children’s birth outcomes, health service use, and out-of-pocket costs to those of civilian women and children.MethodsRetrospective cohort study using linked administrative data for women giving birth between 1 July 2012 and 30 June 2018 in Queensland, Australia (n = 365,138 births). Women serving in the ADF at the time of birth were identified as having their care funded by the Department of Defence (n = 395 births). Propensity score matching was used to identify a mixed public/private civilian sample of women to allow for comparison with servicewomen, controlling for baseline characteristics. Sensitivity analysis was also conducted using a sample of civilian women accessing only private maternity care.FindingsNearly all servicewomen gave birth in the private setting (97.22%). They had significantly greater odds of having a caesarean section (OR 1.71, 95%CI 1.29?2.30) and epidural (OR 1.56, 95%CI 1.11?2.20), and significantly lower odds of having a non-instrumental vaginal birth (OR 0.57, 95%CI 0.43?0.75) compared to women in the matched public/private civilian sample. Compared to civilian children, children born to servicewomen had significantly higher out-of-pocket costs at birth ($275.93 ± 355.82), in the first ($214.98 ± 403.45) and second ($127.75 ± 391.13) years of life, and overall up to two years of age ($618.66 ± 779.67) despite similar health service use.ConclusionsADF servicewomen have higher rates of obstetric intervention at birth and also pay significantly higher out-of-pocket costs for their children’s health service utilisation up to 2-years of age. Given the high rates of obstetric intervention, greater exploration of servicewomen’s maternity care experiences and preferences is warranted, as this may necessitate further reform to ADF maternity healthcare policy.