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Background: Stillbirth and neonatal death are devastating pregnancy outcomes with long-lasting psychosocial consequences for parents and families, and wide-ranging economic impacts on health systems and society. It is essential that parents and families have access to appropriate support, yet services are often limited. Internet-based programs may provide another option of psychosocial support for parents following the death of a baby. We aim to evaluate the efficacy and acceptability of a self-guided internet-based perinatal bereavement support program "Living with Loss" (LWL) in reducing psychological distress and improving the wellbeing of parents following stillbirth or neonatal death., Methods: This trial is a two-arm parallel group randomized controlled trial comparing the intervention arm (LWL) with a care as usual control arm (CAU). We anticipate recruiting 150 women and men across Australia who have experienced a stillbirth or neonatal death in the past 2 years. Participants randomized to the LWL group will receive the six-module internet-based program over 8 weeks including automated email notifications and reminders. Baseline, post-intervention, and 3-month follow-up assessments will be conducted to assess primary and secondary outcomes for both arms. The primary outcome will be the change in Kessler Psychological Distress Scale (K10) scores from baseline to 3-month follow-up. Secondary outcomes include perinatal grief, anxiety, depression, quality of life, program satisfaction and acceptability, and cost-effectiveness. Analysis will use intention-to-treat linear mixed models to examine psychological distress symptom scores at 3-month follow-up. Subgroup analyses by severity of symptoms at baseline will be undertaken., Discussion: The LWL program aims to provide an evidence-based accessible and flexible support option for bereaved parents following stillbirth or neonatal death. This may be particularly useful for parents and healthcare professionals residing in rural regions where services and supports are limited. This RCT seeks to provide evidence of the efficacy, acceptability, and cost-effectiveness of the LWL program and contribute to our understanding of the role digital services may play in addressing the gap in the availability of specific bereavement support resources for parents following the death of a baby, particularly for men., Trial Registration: Australian New Zealand Clinical Trials Registry, ACTRN12621000631808 . Registered prospectively on 27 May 2021., (© 2022. The Author(s).)

Objectives: Perinatal bereavement care is a complex area of practice. The COVID-19 pandemic led to reconfiguration of maternity and perinatal bereavement care services. This study explores Australian health care providers' perspectives of the impact of COVID-19 on the provision of respectful and supportive care following stillbirth or neonatal death., Methods: Members of a perinatal bereavement care network were consulted at the commencement of the pandemic in Australia using an online feedback form. Respondents provided ratings and free-text comments on the impact of COVID-19 on implementation of 49 recommendations contained in the Perinatal Society of Australia and New Zealand/Stillbirth Centre of Research Clinical Practice Guideline for Respectful and Supportive Perinatal Bereavement Care ., Results: Responses were received from 35 health care providers who provided perinatal bereavement care in clinical settings or through support organisations in Australia. Major impacts of COVID-19 were reported for 8 of 49 guideline recommendations. Impacts included reduced: support for mothers due to visitor restrictions; availability of cultural and spiritual support and interpreters; involvement of support people in decision-making; options for memory-making and commemorative rituals; and staff training and supervision. Adaptations to minimise impacts included virtual consultations, online staff training, use of cold cots, and increased staff support for memory-making., Conclusions: Health care providers encounter substantial challenges as they strive to implement best practice perinatal bereavement care in pandemic conditions. Some practice adaptations developed during the COVID-19 pandemic could benefit parents; however, evaluation of their effectiveness and acceptability is needed., (© 2022 Frances M. Boyle et al., published by De Gruyter, Berlin/Boston.)

Background: Up to 20% of all stillbirths and 45% of term stillbirths are currently classified as unexplained. Many of these stillbirths do not undergo currently recommended investigations. This may leave questions unanswered and not identify stillbirths with a recurrence risk in subsequent pregnancies. Aims: To validate a new tool (Stillbirth Investigation Utility Tool) to identify the clinical utility of investigations in stillbirth and the inter‐rater agreement on cause of stillbirth using the Perinatal Society of Australia and New Zealand‐Perinatal Death Classification (PSANZ‐PDC). Materials and methods: Thirty‐four stillbirths were randomly selected for inclusion, each assessed independently by five blinded assessors. The investigations were grouped into three categories: clinical and laboratory; placental pathology; and autopsy examination. The cause of death was assigned at the end of each group. Outcome measures were clinical utility of investigations measured by assessor rated usefulness and inter‐rater agreement on the assigned cause of death. Results: Comprehensive maternal history, maternal full blood count, maternal blood group and screen and placenta histopathology were useful in all cases. Clinical photographs were not performed and should have been performed in 50% of cases. The inter‐rater agreement on cause of death assigned after all investigation results was 0.93 (95% CI 0.87–1.0). Conclusions: The new Stillbirth Investigation Utility Tool showed very good agreement in assigning the cause of death using PSANZ‐PDC. Four investigations were useful in all cases. Minor refinements will be made based on feedback to enhance usability for wider implementation in research studies to assess the yield of investigations in stillbirths. [ABSTRACT FROM AUTHOR]

Background: Stillbirth, the death of a baby before birth, is associated with significant psychological and social consequences that can be mitigated by respectful and supportive bereavement care. The absence of high‐level evidence to support the broad scope of perinatal bereavement practices means that offering a range of options identified as valued by parents has become an important indicator of care quality. This study aimed to describe bereavement care practices offered to parents across different high‐income and middle‐income countries. Methods: An online survey of parents of stillborn babies was conducted between December 2014 and February 2015. Frequencies of nine practices were compared between high‐income and middle‐income countries. Differences in proportions of reported practices and their associated odds ratios were calculated to compare high‐income and middle‐income countries. Results: Over three thousand parents (3041) with a self‐reported stillbirth in the preceding five years from 40 countries responded. Fifteen countries had atleast 40 responses. Significant differences in the prevalence of offering nine bereavement care practices were reported by women in high‐income countries (HICs) compared with women in middle‐income countries (MICs). All nine practices were reported to occur significantly more frequently by women in HICs, including opportunity to see and hold their baby (OR = 4.8, 95% CI 4.0‐5.9). The widespread occurrence of all nine practices was reported only for The Netherlands. Conclusions: Bereavement care after stillbirth varies between countries. Future research should look at why these differences occur, their impact on parents, and whether differences should be addressed, particularly how to support effective communication, decision‐making, and follow‐up care. [ABSTRACT FROM AUTHOR]

High 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. We 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. The 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. Best 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. [ABSTRACT FROM AUTHOR]

Abstract: Background: Experiencing stillbirth is devastating and leaves parents searching for causes. Autopsy is the gold standard for investigation, but deciding to consent to this procedure is very difficult for parents. Decision support in the form of clear, consistent, and parent‐centered information is likely to be helpful. The aims of this study were to understand the influences on parents’ decisions about autopsy after stillbirth and to identify attributes of effective decision support that align with parents’ needs. Methods: Framework analysis using the Decision Drivers Model was used to analyze responses from 460 Australian and New Zealand (ANZ) mothers who took part in a multi‐country online survey of parents’ experiences of stillbirth. The main outcomes examined were factors influencing mothers’ decisions to consent to autopsy after stillbirth. Results: Free‐text responses from 454 ANZ mothers referenced autopsy, yielding 1221 data segments for analysis. The data confirmed the difficult decision autopsy consent entails. Mothers had a strong need for answers coupled with a strong need to protect their baby. Four “decision drivers” were confirmed: preparedness for the decision; parental responsibility; possible consequences; and role of health professionals. Each had the capacity to influence decisions for or against autopsy. Also prominent were the “aftermath” of the decision: receiving the results; and decisional regret or uncertainty. Conclusions: The influences on decisions about autopsy are diverse and unpredictable. Effective decision support requires a consistent and structured approach that is built on understanding of parents’ needs. [ABSTRACT FROM AUTHOR]

Background Accurate determination of causes of stillbirth is critical to effective prevention. Autopsy remains the gold standard investigation for stillbirth; however, with low autopsy rates many stillbirths are likely to be 'unexplored' rather than 'unexplained'. Aim To determine factors associated with autopsy following stillbirth. Materials and methods Routinely collected population-based data on all singleton stillbirths of at least 400 g birthweight or 20 weeks gestation in Queensland between July 2000 and December 2011 were examined. Adjusted odds ratios ( aOR, 99% CI) were calculated accounting for sociodemographic, pregnancy and medical factors. Of interest was initially unexplained stillbirth on the death certificate; analysis was stratified by gestational age group (<24, 24-27, 28-36 and ≥37 weeks). Results Of 3842 singleton stillbirths included in these analyses, 1356 (35.3%) had an autopsy performed. Initially unexplained stillbirth was associated with decreased odds of autopsy at late gestation (28-36 weeks, aOR 0.63 (99% CI 0.42-0.93); ≥37 weeks, aOR 0.53 (99% CI 0.35-0.81)) as was intrapartum stillbirth (<24 weeks, aOR 0.63 (99% CI 0.43-0.94); 28-36 weeks, aOR 0.37 (99% CI 0.14-0.98)). Congenital abnormality (<24 weeks, ≥37 weeks), small-for-gestational age (<24 weeks), and primigravidity (≥37 weeks) were associated with increased odds of autopsy following stillbirth. Conclusions Pregnancy factors are associated with stillbirth autopsy. These findings have implications for development of appropriate information for parents and education of clinical staff. Further research is needed into factors influencing autopsy following stillbirth. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background Stillbirth is a profoundly distressing event. Little evidence exists to guide best practice bereavement care in the perinatal setting. Aims To document parents' experiences and outcomes in relation to seeing and holding a stillborn baby at a hospital with a specialist perinatal bereavement service. Materials and Methods Prospective cohort study of 26 mothers and 11 fathers who experienced a stillbirth at the Mater Mothers' Hospital, Brisbane from September 2007-December 2008. Mailed self-report questionnaires were completed at 6-8 weeks and 6 and 13 months postloss. Validated measures assessed regret regarding the decision to see and hold the baby, parental grief and mental health. Results Of 78 fetal deaths, 26 mothers and 11 fathers participated. Most (20 mothers; 9 fathers) chose to see and hold their stillborn infant. Little regret was reported, irrespective of the decision. For mothers, seeing and holding was associated with higher 'active grief' at 6-8 weeks (mean difference ( MD) = 10.5; 95% CI = 3.3-17.8; P < 0.01), 6 months ( MD = 8.0; 95% CI = 0.6-15.4; P = 0.03) and 13 months ( MD = 9.9; 95% CI = 1.8-17.9; P = 0.01), but not with 'not coping' or 'despair', or mental health. Fathers reported poorer mental health but small numbers mean estimates are imprecise. Conclusions More intense grief does not equate with poorer mental health for mothers who choose to see and hold a stillborn infant. Fathers' experiences warrant further study. Supported decision-making is important for bereaved parents, and rigorous evaluation of bereavement care is essential. [ABSTRACT FROM AUTHOR]

AbstractTrial RegistrationStillbirth and neonatal death are devastating pregnancy outcomes with enduring psychosocial and emotional effects on parents and families. Families need appropriate support, yet access to services is often limited. In a randomized controlled trial, we evaluated the efficacy and acceptability of a self-guided internet-based perinatal grief program, Living with Loss (LWL), to support coping and wellbeing among bereaved parents following perinatal death. Eligible parents, largely mothers, were recruited online and randomized to the intervention arm (n = 48) or a care-as-usual (CAU) control arm (n = 47). The LWL program comprised six internet-based modules completed over 8 weeks. The primary outcome was psychological distress; secondary outcomes were perinatal grief intensity, anxiety, depression, and program satisfaction and acceptability. The LWL program reduced psychological distress at post-program compared with CAU. The program had moderate adherence rates and high program satisfaction. There were no differences in the secondary outcomes, and the effect on psychological distress was not sustained at 3-month follow-up. This study provides preliminary evidence for the utility of an internet-based perinatal grief support program to reduce psychological distress in the shorter term among bereaved parents. Further research is needed to determine how psychological distress can be minimized in the longer term, and whether self-guided internet-based support is effective for bereaved fathers and extended family members. Further research is also needed to investigate the effectiveness of the program in real-world settings.Australian New Zealand Clinical Trials Registry, ACTRN12621000631808, registered prospectively on 27/05/2021; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=381231&isReview=true [ABSTRACT FROM AUTHOR]