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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).)

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., (© 2021 Wiley Periodicals LLC.)

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., (Copyright © 2020 Australian College of Midwives. All rights reserved.)

Objective: To develop global consensus on a set of evidence-based core principles for bereavement care after stillbirth., Methods: A modified policy-Delphi methodology was used to consult international stakeholders and healthcare workers with experience in stillbirth between September 2017 and October 2018. Five sequential rounds involved two expert stakeholder meetings and three internet-based surveys, including a global internet-based survey targeted at healthcare workers in a wide range of settings., Results: Initially, 23 expert stakeholders considered 43 evidence-based themes derived from systematic reviews, identifying 10 core principles. The global survey received 236 responses from participants in 26 countries, after which nine principles met a priori criteria for inclusion. The final stakeholder meeting and internet-based survey of all participants confirmed consensus on eight core principles. Highest quality bereavement care should be enabled through training of healthcare staff to reduce stigma and establish respectful care, including acknowledgement and support for grief responses, and provision for physical and psychologic needs. Women and families should be supported to make informed choices, including those concerning their future reproductive health., Conclusion: Consensus was established for eight principles for stillbirth bereavement care. Further work should explore implementation and involve the voices of women and families globally., (© 2020 International Federation of Gynecology and Obstetrics.)

Background: 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., Aim: 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., Discussion: 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., Conclusion: 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., (Copyright © 2019 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.)

Objective: To quantify parents' experiences of respectful care around stillbirth globally. Design: Multi‐country, online, cross‐sectional survey. Setting and population: Self‐identified bereaved parents (n = 3769) of stillborn babies from 44 high‐ and middle‐income countries. Methods: Parents' perspectives of seven aspects of care quality, factors associated with respectful care and seven bereavement care practices were compared across geographical regions using descriptive statistics. Respectful care was compared between country‐income groups using multivariable logistic regression. Main outcome measures: Self‐reported experience of care around the time of stillbirth. Results: A quarter (25.4%) of 3769 respondents reported disrespectful care after stillbirth and 23.5% reported disrespectful care of their baby. Gestation less than 30 weeks and primiparity were associated with disrespect. Reported respectful care was lower in middle‐income countries than in high‐income countries (adjusted odds ratio 0.35, 95% CI 0.29–0.42, p < 0.01). In many countries, aspects of care quality need improvement, such as ensuring families have enough time with providers. Participating respondents from Latin America and southern Europe reported lower satisfaction across all aspects of care quality compared with northern Europe. Unmet need for memory‐making activities in middle‐income countries was high. Conclusions: Many parents experience disrespectful care around stillbirth. Provider training and system‐level support to address practical barriers are urgently needed. However, some practices (which are important to parents) can be readily implemented such as memory‐making activities and referring to the baby by name. One in four experience disrespectful care after stillbirth. Parents want more time with providers and their babies, to talk and memory‐make. One in four experience disrespectful care after stillbirth. Parents want more time with providers and their babies, to talk and memory‐make. Linked article: This article is commented on by Mehali Patel, pp. 1740 in this issue. To view this minicommentary visit https://doi.org/10.1111/1471-0528.17146. Linked article: This article is commented on by Susannah H. Leisher, pp. 1741‐1742 in this issue. To view this minicommentary visit https://doi.org/10.1111/1471-0528.17157. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [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]

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 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]