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Despite the frequency of stillbirths, the subsequent implications are overlooked and underappreciated. We present findings from comprehensive, systematic literature reviews, and new analyses of published and unpublished data, to establish the effect of stillbirth on parents, families, health-care providers, and societies worldwide. Data for direct costs of this event are sparse but suggest that a stillbirth needs more resources than a livebirth, both in the perinatal period and in additional surveillance during subsequent pregnancies. Indirect and intangible costs of stillbirth are extensive and are usually met by families alone. This issue is particularly onerous for those with few resources. Negative effects, particularly on parental mental health, might be moderated by empathic attitudes of care providers and tailored interventions. The value of the baby, as well as the associated costs for parents, families, care providers, communities, and society, should be considered to prevent stillbirths and reduce associated morbidity.

Background Despite improvements in maternity healthcare services over the last few decades, more than 2.7 million babies worldwide are stillborn each year. The global health agenda is silent about stillbirth, perhaps, in part, because its wider impact has not been systematically analysed or understood before now across the world. Our study aimed to systematically review, evaluate and summarise the current evidence regarding the psychosocial impact of stillbirth to parents and their families, with the aim of improving guidance in bereavement care worldwide. Methods Systematic review and meta-summary (quantitative aggregation of qualitative findings) of quantitative, qualitative, and mixed-methods studies. All languages and countries were included. Results Two thousand, six hundred and nineteen abstracts were identified; 144 studies were included. Frequency effect sizes (FES %) were calculated for each theme, as a measure of their prevalence in the literature. Themes ranged from negative psychological symptoms post bereavement (77 · 1) and in subsequent pregnancies (27 · 1), to disenfranchised grief (31 · 2), and incongruent grief (28 · 5), There was also impact on siblings (23 · 6) and on the wider family (2 · 8). They included mixed-feelings about decisions made when the baby died (12 · 5), avoidance of memories (13 · 2), anxiety over other children (7 · 6), chronic pain and fatigue (6 · 9), and a different approach to the use of healthcare services (6 · 9). Some themes were particularly prominent in studies of fathers; grief suppression (avoidance)(18 · 1), employment difficulties, financial debt (5 · 6), and increased substance use (4 · 2). Others found in studies specific to mothers included altered body image (3 · 5) and impact on quality of life (2 · 1). Counter-intuitively, Some themes had mixed connotations. These included parental pride in the baby (5 · 6), motivation for engagement in healthcare improvement (4 · 2) and changed approaches to life and death, self-esteem, and own identity (25 · 7). In studies from low/middle income countries, stigmatisation (13 · 2) and pressure to prioritise or delay conception (9) were especially prevalent. Conclusion Experiencing the birth of a stillborn child is a life-changing event. The focus of the consequences may vary with parent gender and country. Stillbirth can have devastating psychological, physical and social costs, with ongoing effects on interpersonal relationships and subsequently born children. However, parents who experience the tragedy of stillbirth can develop resilience and new life-skills and capacities. Future research should focus on developing interventions that may reduce the psychosocial cost of stillbirth.

Background Sub-optimal medication adherence in pregnant women with chronic disease and pregnancy-related indications has the potential to adversely affect maternal and perinatal outcomes. Adherence to appropriate medications is advocated during and when planning pregnancy to reduce risk of adverse perinatal outcomes relating to chronic disease and pregnancy-related indications. We aimed to systematically identify effective interventions to promote medication adherence in women who are pregnant or planning to conceive and impact on perinatal, maternal disease-related and adherence outcomes. Methods Six bibliographic databases and two trial registries were searched from inception to 28th April 2022. We included quantitative studies evaluating medication adherence interventions in pregnant women and women planning pregnancy. Two reviewers selected studies and extracted data on study characteristics, outcomes, effectiveness, intervention description (TIDieR) and risk of bias (EPOC). Narrative synthesis was performed due to study population, intervention and outcome heterogeneity. Results Of 5614 citations, 13 were included. Five were RCTs, and eight non-randomised comparative studies. Participants had asthma ( n  = 2), HIV ( n  = 6), inflammatory bowel disease (IBD; n  = 2), diabetes ( n  = 2) and risk of pre-eclampsia ( n  = 1). Interventions included education +/− counselling, financial incentives, text messaging, action plans, structured discussion and psychosocial support. One RCT found an effect  of the tested intervention on self-reported antiretroviral adherence but not objective adherence. Clinical outcomes were not evaluated. Seven non-randomised comparative studies found an association between the tested intervention and at least one outcome of interest: four found an association between receiving the intervention and both improved clinical or perinatal outcomes and adherence in women with IBD, gestational diabetes mellitus (GDM), and asthma. One study in women with IBD reported an association between receiving the intervention and maternal outcomes but not for self-reported adherence. Two studies measured only adherence outcomes and reported an association between receiving the intervention and self-reported and/or objective adherence in women with HIV and risk of pre-eclampsia. All studies had high or unclear risk of bias. Intervention reporting was adequate for replication in two studies according to the TIDieR checklist. Conclusions There is a need for high-quality RCTs reporting replicable interventions to evaluate medication adherence interventions in pregnant women and those planning pregnancy. These should assess both clinical and adherence outcomes.

Background Expectations of birth, and whether they are met, influence postnatal psychological wellbeing. Intrapartum interventions, for example induction of labour, are increasing due to a changing pregnant population and evolving evidence, which may contribute to a mismatch between expectations and birth experience. NICE recommends antenatal education (ANE) to prepare women for labour and birth, but there is no mandated UK National Health Service (NHS) ANE curriculum. We aimed to explore women’s expectations of childbirth and their understanding of common interventions and complications following NHS and non-NHS ANE. Method Qualitative focus groups were conducted with postnatal women (< 12 months postpartum) aged  ≥  16, who had received antenatal care at a single NHS Trust. A semi-structured topic guide was used to explore birth expectations following attendance at ANE and knowledge of birth interventions and complications. Data were transcribed and thematic analysis was undertaken by at least two researchers. Results 46 women (mean age: 33.5years; 81% white British) participated across eight groups. 65% were primiparous, 35% had a caesarean birth. 50% attended NHS ANE and 59% non-NHS ANE. Participants perceived that a ‘hierarchy of birth’ was presented within ANE classes, where a ‘better birth’ involved vaginal birth, minimal pain relief and limited intervention. Participants described expectations of control and choice over their birth, though some described being encouraged to be open-minded about the course it may take. Participants identified a mismatch between their expectations and subsequent experiences, which adversely impacted their psychological wellbeing. While participants received information about common birth interventions and complications, limited time spent on these during classes resulted in expectations that they were rare. Participants felt that receiving sensitively presented information about the frequency of interventions could prepare women and support their psychological wellbeing after birth. Conclusions Women’s expectations of birth are informed by ANE which may precipitate a mismatch between expectations and experience. Better information about risk factors and frequency of labour and birth interventions may support women to develop evidence-informed expectations of birth, reducing the expectation-experience gap, with consequent impact on maternal postnatal wellbeing. A mandatory minimum curriculum for ANE is needed to ensure high-quality education is available to all.

IntroductionPlacental dysfunction is estimated to affect 10% of pregnancies and is associated with adverse perinatal outcomes. Low-dose aspirin (LDA) reduces placental dysfunction risk. However, adherence to LDA is suboptimal in pregnant women and may reduce its effectiveness.ObjectivesWe aimed to explore the barriers and facilitators to LDA adherence in pregnant women with placental dysfunction risk.DesignQualitative semi-structured individual interviews were undertaken, and data were inductively thematically analysed.SettingA single NHS Trust in South West England, UK.ParticipantsPregnant women aged>18, recommended daily LDA for pregnancy indications. We purposively recruited those with a range of adherence patterns (non-adherent, suboptimally adherent, adherent).Results15 women participated (93% white British, 73% university educated). Five were adherent (6–7 doses per week), five suboptimally adherent (4–5 doses per week) and five non-adherent (<3 doses per week). Indications for LDA were pre-eclampsia risk, low PAPP-A and previous intrauterine growth restriction. Four themes and related subthemes were identified addressing motivational and implementation issues. Motivational barriers and facilitators included (1) risk perceptions: participants described limited understanding of their indications for LDA and the maternal and fetal impacts of placental dysfunction, feeling stigmatised by their body mass index being an indicator for LDA and perceiving it to be unlikely they would experience serious consequences of placental dysfunction. Facilitators were direct/indirect experiences of placental dysfunction. (2) Concerns about taking LDA, including bleeding risk. (3) Interactions with healthcare professionals: participants described receiving limited information from healthcare professionals, with limited attention given to LDA compared with other antenatal recommendations. Distrust and trust in healthcare professionals impacted non-adherence/adherence. Implementation barriers were (4) difficulties with establishing habits, tailing off and difficulties swallowing. Established habits and swallowing LDA whole supported taking it.ConclusionsWe identified motivational and implementation-related barriers and facilitators to LDA adherence in a clinical sample of women with placental dysfunction risk. Women require more information to enhance understanding and inform their decision, and require support to establish effective habits. Theory-informed behaviour change techniques could address these barriers. Adherence barriers and facilitators should be explored in minority ethnicity and economically deprived women, and healthcare staff providing LDA-related care to inform optimally effective interventions.

Background There is limited international consensus about best diagnostic and care practices for gestational diabetes mellitus (GDM). This impacts consistency of care and perinatal outcomes. We aimed to explore GDM diagnostic and care practices in the UK, Ireland and Australia to better understand these variations and determine areas for improvement. Methods We conducted a cross-sectional survey of healthcare professionals between August 2021-November 2022. The survey evaluated the use of GDM guidelines, associated diagnostic practices and post-diagnostic care. Data were descriptively analysed. Results Sixty-three maternity centres were represented (35 England and Wales, 12 Ireland, 16 Australia). 94% of centres in England and Wales and Australia respectively used their national guidelines to select women for GDM testing, with a wider variety of guidelines used in Ireland. Over 80% of centres across countries test women for GDM based on risk-factors identified in early pregnancy. At 24–28 weeks’ gestation, 94% of Australian centres used universal screening as per national guidelines, compared with 3% of centres in England & Wales, and 50% in Ireland, where universal screening is not included in national guidelines. Risk factors used to select women for screening varied between countries and between centres within countries at both time points, with some centres using risk factors outside of their national guidelines. Diagnostic tests for GDM varied between countries and between centres within countries, and according to gestation and previous GDM. Insulin was the most common first-line treatment in Australia, whereas in Ireland and England and Wales it was Metformin. Birth was planned at differing gestations according to centre and country, and according to management strategy. Conclusions GDM-related practices vary within and between Australia, Ireland and England and Wales. National guidelines are not adhered to in some centres, which could result in inconsistent care within countries, and could result in inequitable perinatal outcomes. Further research should address standardised, evidence-informed care and guideline implementation barriers.

ObjectivesTo understand and compare women’s antenatal and postnatal views on: (1) priorities for information provided about labour and delivery and (2) decision-making in labour and delivery.DesignQualitative interview study using repeat interviews at two time points: during pregnancy (≥13 weeks gestation); and after birth (≥6 weeks).SettingLarge maternity hospital in the Southwest of England.ParticipantsPregnant women accessing antenatal care were purposively sampled and recruited antenatally by community midwives to ensure representation from different sociodemographic groups, with diverse experiences of low and high-risk care.Data collectionTelephone interviews with a single researcher using a semistructured interview topic guide.Data analysisInterviews were audio recorded, transcribed verbatim, and qualitative thematic analysis was conducted using Braun and Clarke’s six-stage process.ResultsTwelve women participated (12 antenatal interviews; 10 follow-up postnatal interviews). Overall, women’s postnatal views were consistent with their antenatal views about what they wanted to know and the factors that influence decision-making. Three themes were generated. Theme 1 ‘Sources of information’ presents evidence of how women obtain and use information (sub-themes: ‘social influences’, ‘patient responsibility for information seeking’, ‘NHS vs non-NHS resources’). Theme 2 reports women’s views and experiences of ‘The influence of Healthcare Professionals in decision-making’ (sub-themes ‘patient and professional roles in decision-making’, ‘conflicting advice and preferences’, ‘taking authority in emergency decision-making’). The final theme, theme 3, ‘When, how, and what information women want’ shows women want time to process information (sub-themes ‘when: it’s definitely information and time’, ‘how: presentation of information’, ‘what: information required’). Cross-cutting all themes, we found an unmet need for information to be tailored to the individual.ConclusionsWomen understand decision-making during labour and birth is a dynamic process. Women can struggle with the volume, quality and timing of information available. In busy maternity settings, the challenge is to better equip women with the information they want, and health professionals with the information they need to provide for personalised care and shared decision-making. Antenatal interventions that warrant further research include decision aids, birth plans, and structured counselling using core information sets. Insights from both antenatal and postnatal perspectives will help inform their development.

ObjectivesTo explore and characterise maternity healthcare professionals’ (MHCPs) experience and practice of shared decision-making (SDM), to inform policy, research and practice development.DesignQualitative focus group study.SettingLarge Maternity Unit in the Southwest of England.ParticipantsMHCPs who give information relating to clinical procedures and pregnancy care relating to labour and birth and are directly involved in decision-making conversations were purposively sampled to ensure representation across MHCP groups.Data collectionA semistructured topic guide was used.Data analysisReflexive thematic analysis was undertaken.ResultsSeven focus groups were conducted, comprising a total of 24 participants (3–5 per group). Two themes were developed: contextualising decision-making and controversies in current decision-making. Contextual factors that influenced decision-making practices included lack of time and challenges faced in intrapartum care. MHCPs reported variation in how they approach decision-making conversations and asked for more training on how to consistently achieve SDM. There were communication challenges with women who did not speak English. Three controversies were explored: the role of prior clinical experience, the validity of informed consent when women were in pain and during life-threatening emergencies and instances where women declined medical advice.ConclusionsWe found that MHCPs are committed to SDM but need better support to deliver it. Structured processes including Core Information Sets, communication skills training and decision support aids may help to consistently deliver SDM in maternity care.

Background Disparities in stillbirth and preterm birth persist even after correction for ethnicity and social deprivation, demonstrating that there is wide geographical variation in the quality of care. To address this inequity, Tommy’s National Centre for Maternity Improvement developed the Tommy’s Clinical Decision Tool, which aims to support the provision of “the right care at the right time”, personalising risk assessment and care according to best evidence. This web-based clinical decision tool assesses the risk of preterm birth and placental dysfunction more accurately than current methods, and recommends best evidenced-based care pathways in a format accessible to both women and healthcare professionals. It also provides links to reliable sources of pregnancy information for women. The aim of this study is to evaluate implementation of Tommy’s Clinical Decision Tool in four early-adopter UK maternity services, to inform wider scale-up. Methods The Tommy’s Clinical Decision Tool has been developed involving maternity service users and healthcare professionals in partnership. This mixed-methods study will evaluate: maternity service user and provider acceptability and experience; barriers and facilitators to implementation; reach (whether particular groups are excluded and why), fidelity (degree to which the intervention is delivered as intended), and unintended consequences. Data will be gathered over 25 months through interviews, focus groups, questionnaires and through the Tommy’s Clinical Decision Tool itself. The NASSS framework (Non-adoption or Abandonment of technology by individuals and difficulties achieving Scale-up, Spread and Sustainability) will inform data analysis. Discussion This paper describes the intervention, Tommy’s Clinical Decision Tool, according to TiDIER guidelines, and the protocol for the early adopter implementation evaluation study. Findings will inform future scale up. Trial registration This study was prospectively registered on the ISRCTN registry no. 13498237 , on 31 st January 2022.

IntroductionNeonatal death exerts long-lasting impact on parents’ mental health, finances and relationships, and the wider family. There is national and international momentum to evaluate interventions to support parents after the death of a baby. Core Outcome Sets (COSs) provide a minimum set of outcomes, agreed by stakeholders to be important, which should be evaluated in all studies to support evidence syntheses and identification of the most effective interventions. We aim to develop a COS for assessing interventions and care after neonatal death in high-income countries, to support future evidence syntheses and enable the identification of effective interventions and care for parents.Methods and analysisWe will develop the COS in six phases. A parent involvement group and stakeholder steering committee have been established and have informed each planned phase: (1) systematic review of quantitative studies evaluating care and interventions provided after neonatal death, to describe interventions, outcomes and outcome measurement tools used to assess intervention effectiveness; (2) qualitative interviews with parents who have experienced neonatal death to identify outcomes important and relevant to them; (3) think-aloud interviews with stakeholders (bereaved parents, healthcare professionals and other stakeholders) to develop and refine an online survey; (4) real-time online international Delphi survey with bereaved parents, healthcare professionals and other stakeholders to shortlist outcomes for consideration in the COS; (5) adapted nominal group online consensus meetings with parents, healthcare professionals and other stakeholders to agree final COS and (6) identification of a preliminary set of measurement tools.Ethics and disseminationEthical approval has been granted for all activities to be undertaken by the University of Bristol Health Sciences Faculty Research Ethics Committee (reference: 15121). We will disseminate the findings via peer-reviewed publications and relevant academic and professional conferences.PROSPERO registration numberCRD42020151365.