Support for mothers, fathers and families after perinatal death (Review)

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Interventions for supporting parents' decisions about autopsy after stillbirth (Review)

Background: Stillbirth remains one of the least understood areas of infant death and accurate data on the causes of stillbirth are the cornerstone of stillbirth prevention. An autopsy examination remains the gold standard post-mortem investigation for stillbirth. However, decisions about post-mortem investigations, particularly autopsy are difficult. The purpose of this review is to examine the effectiveness of methods to help parents who have experienced a stillbirth decide whether to have post-mortem investigations, including whether to have an autopsy performed. Objectives: The primary objectives were a) to examine the effectiveness of interventions to support parents' decisions about autopsy consent after a stillbirth on outcomes for parents, and b) to determine autopsy rates. Secondary objectives were to identify issues related to the acceptability of any interventions to parents and the feasibility of their implementation. Search methods: We searched the Cochrane Pregnancy and Childbirth Group's Trials Register (29 October 2012), the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library 2012, Issue 10), MEDLINE (1966 to 24 July 2012) and EMBASE (1980 to 24 July 2012), Current Controlled Trials metaRegister (mRCT) (18 September 2012) and the WHO International Clinical Trials Registry Platform Search Portal (ICTRP) (18 September 2012). We also searched the websites of the Stillbirth and Neonatal Death Charity (SANDS) and International Stillbirth Alliance (ISA) (18 September 2012) and then subsequently searched the websites of all the ISA member organisations. Selection criteria: Randomised controlled trials (RCTs) of interventions designed specifically to support parents who have experienced a stillbirth make decisions about their options for post-mortem investigations including all investigations after stillbirth compared with usual care. Data collection and analysis: Two review authors independently screened citations against the selection criteria. Main results: No studies meeting the review inclusion criteria were identified. A search of 40 websites associated with supporting parents who experience stillbirth also found little reference to, or information about autopsy or other post-mortem examinations. Authors' conclusions: Support for parents making decisions about autopsy or other post-mortem examinations after stillbirth must rely on the ad hoc knowledge and experience of those involved at the time

Gestational age specific stillbirth risk among Indigenous and non-Indigenous women in Queensland, Australia: a population based study.

BACKGROUND: In Australia, significant disparity persists in stillbirth rates between Aboriginal and Torres Strait Islander (Indigenous Australian) and non-Indigenous women. Diabetes, hypertension, antepartum haemorrhage and small-for-gestational age (SGA) have been identified as important contributors to higher rates among Indigenous women. The objective of this study was to examine gestational age specific risk of stillbirth associated with these conditions among Indigenous and non-Indigenous women. METHODS: Retrospective population-based study of all singleton births of at least 20 weeks gestation or at least 400 grams birthweight in Queensland between July 2005 and December 2011 using data from the Queensland Perinatal Data Collection, which is a routinely-maintained database that collects data on all births in Queensland. Multivariate logistic regression was used to calculate adjusted odds ratios (aOR) and 95 % confidence intervals, adjusting for maternal demographic and pregnancy factors. RESULTS: Of 360987 births analysed, 20273 (5.6 %) were to Indigenous women and 340714 (94.4 %) were to non-Indigenous women. Stillbirth rates were 7.9 (95 % CI 6.8-9.2) and 4.1 (95 % CI 3.9-4.3) per 1000 births, respectively. For both Indigenous and non-Indigenous women across most gestational age groups, antepartum haemorrhage, SGA, pre-existing diabetes and pre-existing hypertension were associated with increased risk of stillbirth. There were mixed results for pre-eclampsia and eclampsia and a consistently raised risk of stillbirth was not seen for gestational diabetes. CONCLUSION: This study highlights gestational age specific stillbirth risk for Indigenous and non-Indigenous women; and disparity in risk at term gestations. Improving access to and utilisation of appropriate and responsive healthcare may help to address disparities in stillbirth risk for Indigenous women.Ibinabo Ibiebele is a recipient of the National Health and Medical Research Council Postgraduate Public Health scholarship and the University of Queensland Research Scholarship.This is the final version of the article. It first appeared from BioMed Central via http://dx.doi.org/10.1186/s12884-016-0943-

Implementation of uniform information on fetal movement in a Norwegian population reduced delayed reporting of decreased fetal movement and stillbirths in primiparous women - a clinical quality improvement

Background. Delayed maternal reporting of decreased fetal movement (DFM) is associated with adverse pregnancy outcomes. Inconsistent information on fetal activity to women during the antenatal period may result in delayed reporting of DFM. We aimed to evaluate an intervention of implementation of uniform information on fetal activity to women during the antenatal period. Methods. In a prospective before-and-after study, singleton women presenting DFM in the third trimester across 14 hospitals in Norway were registered. Outcome measures were maternal behavior regarding reporting of DFM, concerns and stillbirth. In addition, cross-sectional studies of all women giving birth were undertaken to assess maternal concerns about fetal activity, and population-based data were obtained from the Medical Birth Registry Norway. Results. Pre- and post-intervention cohorts included 19 407 and 46 143 births with 1 215 and 3 038 women with DFM respectively. Among primiparous women with DFM, a reduction in delayed reporting of DFM (48 hrs) OR 0.61 (95% CI 0.47-0.81) and stillbirths OR 0.36 (95% CI 0.19-0.69) was shown in the post-intervention period. No difference was shown in rates of consultations for DFM or maternal concerns. Stillbirth rates and maternal behavior among women who were of non-Western origin, smokers, overweight or >34 years old were unchanged. Conclusions. Uniform information on fetal activity provided to pregnant women was associated with a reduction in the number of primiparous women who delayed reporting of DFM and a reduction of the stillbirth rates for primiparous women reporting DFM. The information did not appear to increase maternal concerns or rate of consultation. Due to different imperfections in different clinical settings, further studies in other populations replicating these findings are required

Oxytocin receptor antagonists for inhibiting preterm labour (Review)

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Making stillbirths count, making numbers talk - issues in data collection for stillbirths.

BACKGROUND: Stillbirths need to count. They constitute the majority of the world's perinatal deaths and yet, they are largely invisible. Simply counting stillbirths is only the first step in analysis and prevention. From a public health perspective, there is a need for information on timing and circumstances of death, associated conditions and underlying causes, and availability and quality of care. This information will guide efforts to prevent stillbirths and improve quality of care. DISCUSSION: In this report, we assess how different definitions and limits in registration affect data capture, and we discuss the specific challenges of stillbirth registration, with emphasis on implementation. We identify what data need to be captured, we suggest a dataset to cover core needs in registration and analysis of the different categories of stillbirths with causes and quality indicators, and we illustrate the experience in stillbirth registration from different cultural settings. Finally, we point out gaps that need attention in the International Classification of Diseases and review the qualities of alternative systems that have been tested in low- and middle-income settings. SUMMARY: Obtaining high-quality data will require consistent definitions for stillbirths, systematic population-based registration, better tools for surveys and verbal autopsies, capacity building and training in procedures to identify causes of death, locally adapted quality indicators, improved classification systems, and effective registration and reporting systems

Stillbirths: Where? When? Why? How to make the data count?

Despite increasing attention and investment for maternal, neonatal, and child health, stillbirths remain invisible-not counted in the Millennium Development Goals, nor tracked by the UN, nor in the Global Burden of Disease metrics. At least 2·65 million stillbirths (uncertainty range 2·08 million to 3·79 million) were estimated worldwide in 2008 (≥1000 g birthweight or ≥28 weeks of gestation). 98% of stillbirths occur in low-income and middle-income countries, and numbers vary from 2·0 per 1000 total births in Finland to more than 40 per 1000 total births in Nigeria and Pakistan. Worldwide, 67% of stillbirths occur in rural families, 55% in rural sub-Saharan Africa and south Asia, where skilled birth attendance and caesarean sections are much lower than that for urban births. In total, an estimated 1·19 million (range 0·82 million to 1·97 million) intrapartum stillbirths occur yearly. Most intrapartum stillbirths are associated with obstetric emergencies, whereas antepartum stillbirths are associated with maternal infections and fetal growth restriction. National estimates of causes of stillbirths are scarce, and multiple (>35) classification systems impede international comparison. Immediate data improvements are feasible through household surveys and facility audit, and improvements in vital registration, including specific perinatal certificates and revised International Classification of Disease codes, are needed. A simple, programme-relevant stillbirth classification that can be used with verbal autopsy would provide a basis for comparable national estimates. A new focus on all deaths around the time of birth is crucial to inform programmatic investment

Re: Impact of holding the baby following stillbirth on maternal mental health and well-being: findings from a national survey. BMJ Open 2016;6(8):e010996

Response to 'Impact of holding the baby following stillbirth on maternal mental health and well-being: findings from a national survey' BMJ Open 2016, 6(8), e010996 (9pp). doi: 10.1136/bmjopen-2015-010996. Response available at: https://bmjopen.bmj.com/content/6/8/e010996.responses (Accessed: 19 January 2023)Dear Editor: We were interested in the recent article by Redshaw et al. which reported higher rates of mental health and relationship difficulties among women who held their stillborn baby.1 We agree this is an important topic, but after reviewing the article in depth, we would like to raise several concerns. (1) We note that this was a retrospective survey with a 30.2% response rate in which just 3% of women did not see and 16% did not hold their baby; these limitations were acknowledged but we believe they also restrict the ability to draw broad conclusions. (2) There was little exploration into the reasons why women did not hold their babies and if they had any regrets about their decisions. While four out of five women reported they did not hold because they could not or did not want to, the study did not account for the fact that women who declined may be fundamentally different at baseline, so that mental health outcomes may be due to underlying differences in mothers rather than their choices or experiences at birth. (3) While the authors emphasize that holding was associated with a trend toward worse mental health outcomes, their actual multivariable analyses show that at 9 months, the only statistically significant difference was higher odds of anxiety. Pre-existing anxiety could contribute to a woman's hesitance to hold the baby after delivery and separately serves as a predictor of postpartum mental health. (4) Even though there are many validated, widely-tested measures to assess postpartum depression,2-5 anxiety,6 and PTSD,7, 8 in both live birth and bereaved mothers, this study used non-validated self-report measures which leads to the need for very cautious interpretation of the results. (5) The factors which have been demonstrated to be strong predictors of postpartum depression and PTSD include prior mental health conditions, interpersonal violence, and lack of social support.9-12 This study did not measure or control for any of these factors. (6) Another issue not addressed in this article is the well-acknowledged preference by parents to be given the option to see or hold their baby and strong evidence that the majority of women are satisfied with their decision.10, 13 Events surrounding the birth of a stillborn baby can have lasting impact on how a mother experiences, remembers, and copes with this event.14 The decision to see or hold a stillborn baby warrants additional investigation, but research must adjust for the known confounders which have been shown to predict development of mental health problems. Moreover, there should be recognition that the experience of a mother at the time of delivery is complex, and multiple pre-existing and intrapartum factors may affect subsequent outcomes and grief. In summary, we believe it is not possible to reach a conclusion from this study about whether the decision to see or hold a stillborn baby is detrimental or helpful to bereaved parents and urge research to gain a more nuanced understanding of the factors which contribute to parental experiences at the time of delivery and which may influence long-term mental health outcomes. We strongly urge health care providers to continue to offer women the option to hold their stillborn baby, and to make this offer in a respectful, supportive, and normative manner

Counting every stillbirth and neonatal death through mortality audit to improve quality of care for every pregnant woman and her baby

BACKGROUND: While there is widespread acknowledgment of the need for improved quality and quantity of information on births and deaths, there has been less movement towards systematically capturing and reviewing the causes and avoidable factors linked to deaths, in order to affect change. This is particularly true for stillbirths and neonatal deaths which can fall between different health care providers and departments. Maternal and perinatal mortality audit applies to two of the five objectives in the Every Newborn Action Plan but data on successful approaches to overcome bottlenecks to scaling up audit are lacking. METHODS: We reviewed the current evidence for facility-based perinatal mortality audit with a focus on low- and middle-income countries and assessed the status of mortality audit policy and implementation. Based on challenges identified in the literature, key challenges to completing the audit cycle and affecting change were identified across the WHO health system building blocks, along with solutions, in order to inform the process of scaling up this strategy with attention to quality. RESULTS: Maternal death surveillance and review is moving rapidly with many countries enacting and implementing policies and with accountability beyond the single facility conducting the audits. While 51 priority countries report having a policy on maternal death notification in 2014, only 17 countries have a policy for reporting and reviewing stillbirths and neonatal deaths. The existing evidence demonstrates the potential for audit to improve birth outcomes, only if the audit cycle is completed. The primary challenges within the health system building blocks are in the area of leadership and health information. Examples of successful implementation exist from high income countries and select low- and middle-income countries provide valuable learning, especially on the need for leadership for effective audit systems and on the development and the use of clear guidelines and protocols in order to ensure that the audit cycle is completed. CONCLUSIONS: Health workers have the power to change health care routines in daily practice, but this must be accompanied by concrete inputs at every level of the health system. The system requires data systems including consistent cause of death classification and use of best practice guidelines to monitor performance, as well as leaders to champion the process, especially to ensure a no-blame environment, and to access change agents at other levels to address larger, systemic challenges

Causes of death and associated conditions (Codac): a utilitarian approach to the classification of perinatal deaths.

A carefully classified dataset of perinatal mortality will retain the most significant information on the causes of death. Such information is needed for health care policy development, surveillance and international comparisons, clinical services and research. For comparability purposes, we propose a classification system that could serve all these needs, and be applicable in both developing and developed countries. It is developed to adhere to basic concepts of underlying cause in the International Classification of Diseases (ICD), although gaps in ICD prevent classification of perinatal deaths solely on existing ICD codes.We tested the Causes of Death and Associated Conditions (Codac) classification for perinatal deaths in seven populations, including two developing country settings. We identified areas of potential improvements in the ability to retain existing information, ease of use and inter-rater agreement. After revisions to address these issues we propose Version II of Codac with detailed coding instructions.The ten main categories of Codac consist of three key contributors to global perinatal mortality (intrapartum events, infections and congenital anomalies), two crucial aspects of perinatal mortality (unknown causes of death and termination of pregnancy), a clear distinction of conditions relevant only to the neonatal period and the remaining conditions are arranged in the four anatomical compartments (fetal, cord, placental and maternal).For more detail there are 94 subcategories, further specified in 577 categories in the full version. Codac is designed to accommodate both the main cause of death as well as two associated conditions. We suggest reporting not only the main cause of death, but also the associated relevant conditions so that scenarios of combined conditions and events are captured.The appropriately applied Codac system promises to better manage information on causes of perinatal deaths, the conditions associated with them, and the most common clinical scenarios for future study and comparisons.RIGHTS : This article is licensed under the BioMed Central licence at http://www.biomedcentral.com/about/license which is similar to the 'Creative Commons Attribution Licence'. In brief you may : copy, distribute, and display the work; make derivative works; or make commercial use of the work - under the following conditions: the original author must be given credit; for any reuse or distribution, it must be made clear to others what the license terms of this work are