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.     

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.     

‘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.     

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 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 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.     

Women’s experiences of health care utilization in cases of early pregnancy loss: A scoping review

BackgroundApproximately 25% of pregnancies end in miscarriage, most occurring within the first trimester (<13 weeks). For many women early pregnancy loss has implications for short- and long- term mental health, and women’s well-being following early pregnancy loss is impacted by their experiences within the healthcare setting. To improve quality of care, it is crucial to understand women’s’ experiences within the healthcare system in cases of early pregnancy loss.QuestionsWhat does the research literature tell us about the experiences of early pregnancy loss within healthcare settings? Are these experiences positive or negative? ‘How can care improve for those experiencing early pregnancy loss?’MethodsA scoping review of the research literature was undertaken. Three research databases were searched for relevant articles published in English since 2009, with key words related to ‘Experience’, ‘Healthcare’ and ‘Early Pregnancy Loss’. A thematic analysis was undertaken to identify and summarize key findings emerging from the research literature.FindingsTwenty-seven (27) articles met our inclusion criteria. Three main themes were identified: (1) issues related to communication, (2) challenges within care environments, and (3) inadequacies in aftercare.DiscussionThe literature suggests that women’s experiences related to healthcare for early pregnancy loss are largely negative, particularly within emergency departments. Recommendations to improve women’s experiences should extend beyond attempts to improve existing care structures, to include emerging environments and providers.ConclusionWomen’s experiences identified within the literature provide further insights on what women are seeking from their care, and how care models can be improved.     

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).     

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.     

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).     

Midwives’ role in the provision of maternal and childhood immunisation information

ProblemInactivated influenza vaccine and diphtheria-tetanus acellular pertussis vaccine are routinely recommended during pregnancy to protect women and their babies from infection. Additionally, the hepatitis B vaccine is recommended for infants within the first week of life; however, little is known about midwives’ experiences of recommending and delivering these immunisations.BackgroundMidwives are a trusted source of vaccine information for parents and the confident provision of information about immunisation during antenatal clinic visits has been found to increase the uptake of antenatal and childhood vaccines.AimThis study aims to explore midwives’ experiences of discussing maternal and childhood immunisation with women and their partners and their confidence in answering parent’s questions.MethodsWe conducted 23 semi-structured interviews with registered Australian midwives working in public and private hospital settings, and in private practice.FindingsMidwives find negotiating the requirement to recommend immunisation within a women-centred framework challenging at times. The vast majority of midwives described their education on immunisation as inadequate and workplace issues, such as time pressure, were identified as further barriers to effective communication about immunisation.Discussion/conclusionThe provision of immunisation training within midwifery education and continued professional development is critical. Appropriately resourcing midwives with the necessary infrastructure, education and resources to fully inform parents about immunisation may have a positive impact on vaccine uptake.     

Perinatal palliative care after a stillbirth—Midwives’ experiences of using Cubitus baby

BackgroundUsually, parents remain at the hospital for two or three days after a stillbirth in Sweden, and the routine until recently has been to place the baby in a refrigerator during the night. A device, the Cubitus Baby, a specially designed cot with cooling blocks, was implemented in all 47 delivery wards during 2013 and 2014.AimTo investigate the midwives’ experiences of using the device when supporting parents after the stillbirth.MethodQuestionnaires were completed by midwives, and a single open-ended question was analysed using content analysis.Findings154 midwives responded. Four categories were identified, with two subgroups in each category: Feelings of dignity (Satisfactory feelings in working with grief; Design and function), Caring cooling (The cooling function; A cold baby), Time for farewell (Time together; Time to make your own choice) and Satisfying feelings for the parents (The parents and Cubitus Baby; The possibility for bonding).ConclusionsThe midwives found that this practice provided a more dignified and worthwhile form of care. There is no need to separate the stillborn baby from the parents during their stay at the hospital. In modern perinatal palliative care, it is not justifiable to place a stillborn baby in a refrigerator.     

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.     

The maternity experiences of women seeking asylum in high-income countries: a meta-ethnography

ProblemThe maternity care experiences and perinatal outcomes of women seeking asylum in high-income countries (HICs) are poorer than the general population of pregnant women in that HIC. There is a paucity of literature on the maternity experiences of women seeking asylum in HICs.BackgroundThere is an increasing number of women seeking asylum in HICs due to escalating violence and human rights abuses. Asylum-seeking women are a distinct group whom are likely to have different needs to refugees or migrants as a result of their undocumented status.AimThis literature review aimed to explore the emotional, physical and health information needs of women seeking asylum in the perinatal period in HICs, to provide insights to better address their maternity needs.MethodA meta-ethnography described by Noblit and Hare, was applied to analyse the studies, to reflect the voices of women seeking asylum, hosted in HICs in their perinatal period.FindingsEight studies were included in the review. The overarching theme was ‘just having to survive.’ Four sub-themes were revealed which highlighted the vulnerability of asylum-seeking women. They included: ‘I was never sure if I had understood’, ‘feeling ignored and alone’, ‘ongoing dislocation and recurrent relocation’ and ‘knowing there’s someone who cares for you’.DiscussionImproved maternity care for women seeking asylum requires culturally appropriate respectful maternity care and supportive strategies such as consistent access to language services.ConclusionIt is recommended that future research is targeted to explore the maternity experience of women seeking asylum in HICs, such as Australia.     

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.     

A literature review to determine midwifery students’ perceived essential qualities of preceptors to increase confidence and competence in the clinical environment

BackgroundMidwifery students’ experiences with preceptors in the clinical environment plays an integral role in developing the confidence and competence of students. As up to 50% of the midwifery program is taught in the clinical environment, an analysis of the preceptorship role in the context of midwifery student confidence and competence may be important to inform future practice and policy.AimTo discover, whilst on clinical placement, what is required by preceptors to suitably equip midwifery students to develop confidence and competence in the clinical environment.MethodsA search of the literature was undertaken using health and midwifery related electronic databases of PubMed, CINAHL, Intermid, SCOPUS and Web of Science. Grey literature, and reference lists from studies were also part of the thorough search process.FindingsAfter critical reading of the 15 included studies, there were a number of themes identified as the preceptor qualities that contributed to student confidence and competence. Those themes include ‘belongingness’, ‘hands on experience/skill development’, ‘students’ development of professional identity’ and ‘preceptor characteristics that impact student learning’.DiscussionStudent confidence and competence can be dependent on the preceptor who supports them. There are preceptors who enable students to flourish in their confidence and competence, and there also appears to be preceptors who do not possess these qualities, which requires further enquiry.ConclusionAs the evidence appears to find that trained preceptors are optimal for student confidence and competence, further enquiry is warranted to inform policy and practice around the concept of preceptorship training for midwives.     

Women and waterbirth: A systematic meta-synthesis of qualitative studies

BackgroundThe practice of waterbirth is increasing worldwide and has been a feature of maternity services in the United Kingdom for over twenty years. The body of literature surrounding the practice focusses on maternal and neonatal outcomes comparing birth in and out of water.AimTo undertake a review of qualitative studies exploring women’s experiences of waterbirth. This understanding is pertinent when supporting women who birth in water.MethodsA literature search was conducted in databases British Nursing Index, Cumulative Index to Nursing and Allied Health Literature, Allied and Complementary Medicine Database, Maternity and Infant Care, Medline, Applied Social Sciences Index and Abstracts and Web of Science, using search terms waterbirth, labour/labor, childbirth, women, mothers, experience, perception and maternity care. Five primary research articles published between 2003 and 2018 which explored the views of women who had birthed in water were selected for inclusion. Using meta-ethnography, qualitative research studies were analysed and synthesised using the method of ‘reciprocal translational analysis’ identifying themes relating to women’s experiences of birthing in water.FindingsFour themes were identified: women’s knowledge of waterbirth; women’s perception of physiological birth; water, autonomy and control; and waterbirth: easing the transition.Discussion and conclusionDespite the paucity of qualitative studies exploring women’s experiences of waterbirth, meta-synthesis of those that do exist suggested women identify positively with the choice. The experience of birthing in water appears to enhance a woman’s sense of autonomy and control during childbirth suggesting waterbirth can be an empowering experience for women who choose it.     

Perceptions of paternal involvement and labour pain management in Chinese couples during childbirth: A qualitative study

BackgroundLabour pain is an individual experience embedded in a socio-cultural context. In childbirth, the father’s involvement provides important support to the mother during labour. However, few published studies have evaluated couples’ experiences of paternal involvement and labour pain management in the Chinese context.AimThis study aimed to understand the experience of labour pain management and the father’s involvement in childbirth from the perspectives of women and their partners in Hong Kong.MethodsAn exploratory qualitative design was adopted. A purposive sample of 45 Chinese parents was recruited at the postnatal unit of a regional hospital. Data were collected through semi-structured face-to-face interviews within 1 month after birth. The data were subjected to content analysis.FindingsThe findings revealed six major themes: the mothers’ experience of labour pain, effectiveness of pain relief measures, mothers’ perceptions of support from their partners, mothers’ perceptions of support from healthcare professionals, fathers’ experience of involvement in childbirth and suggested improvements to maternity services.DiscussionChinese mothers experienced intense labour pain and used various pain relief measures. Both parents considered the involvement of fathers and support from healthcare professionals to be highly significant during childbirth.ConclusionsThis study highlights the need for a family-centred model of care during childbirth that involves both parents in the decision-making process. Chinese maternity services should implement individualised birth plans that acknowledge both parents’ expectations and preferences, thus promoting a positive childbirth experience for the parents.     

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.