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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 examine, using a 30-month prospective study, patterns of anxiety, depression and alcohol use in couples following stillbirth, neonatal death or sudden infant death syndrome., Methodology: One hundred and thirty-eight bereaved and 156 non-bereaved couples completed standardized interviews at 2, 8, 15 and 30 months post-loss., Results: At all interviews, bereaved couples were significantly more likely than non-bereaved couples to have at least one distressed partner. Rarely were both partners distressed in either group. For bereaved couples, 'mother only' distress declined from 21% to 10% during the study. 'Father only' distress ranged from 7% to 15%, peaking at 30 months. Bereaved mothers who were distressed at 2 months reported significantly lower marital satisfaction at 30 months., Conclusions: At the couple level, the experience of a baby's death is multifaceted. Gender differences are common and partners' needs may change over time. Early recognition of these differences may facilitate longer-term adjustment for both partners.

Nonparticipants in epidemiological studies may differ in important respects from participants but the magnitude of this potential bias is rarely quantified. This study estimates the effect of nonparticipation on estimates of mental health problems following stillbirth, neonatal death or sudden infant death syndrome. Of 805 families approached, 512 (64 per cent) were recruited, of whom 77 per cent of mothers and 71 per cent of fathers completed four study interviews. Younger, unmarried, unemployed parents without private health insurance were less often recruited, and even if recruited, were less likely to complete the interview. By evaluating several possible scenarios, we estimated that had mothers lost to follow-up remained in the study, anxiety rates would have varied by no more than +/-4 per cent. Relative risks associated with bereaved-control comparisons would have differed little from the observed estimate of 2.33. Estimating the effects of initial nonresponse is more difficult but the adoption of a worst-case scenario produced a relative risk of 3.47. Despite systematic nonparticipation suggestive of social disadvantage, attrition-related bias may have had only a modest effect on anxiety and depression rate estimates. However, this may not be the case when sample loss is high, when associations between attrition and outcome are strong, and when attrition-related behaviour differs across comparison groups.

Although stressful events have long been implicated in the onset of psychological disorder, available data suggest that the majority of individuals appear to escape serious impairment even following highly traumatic events. Related to this is the question of chronicity and whether those who do become impaired develop mental health problems of an ongoing nature. This paper documents the psychological adjustment of 194 women following a highly stressful event-the death of an infant due to stillbirth, neonatal death or SIDS. Anxiety and depression were measured on four occasions-at 2, 8, 15 and 30 months post-loss--using the Delusions Symptoms States Inventory (DSSI/sAD). For comparative purposes, the mental health of 203 mothers of a surviving infant was similarly assessed. The results demonstrate that bereaved mothers, as a group, manifest significantly higher rates of psychological distress than mothers of living infants for at least 30 months after their loss. Their impairment may be either acute or chronic in form. The majority of bereaved mothers appear not be develop serious mental health problems in response to the loss or experience psychological impairment that is usually self-limiting. For a smaller group of women, the death of a baby may herald serious and ongoing distress. Bereaved mothers who were not distressed soon (2 months) after the loss were unlikely to become so later, but those who were still distressed at 8 months were likely to remain so subsequently.

Background: Stress responses of bereaved parents (mothers 194, fathers 143) who experienced infant loss were compared with parents (mothers 203, fathers 157) with a live born child., Method: Psychological distress using scales of anxiety, depression and alcohol use was compared at 2, 8, 15 and 30 months post-loss., Results: Bereaved mothers showed significantly more anxiety/depression than controls at all four interviews. For bereaved fathers, anxiety/depression differed significantly from controls only at two months. Heavy alcohol use was significantly more prevalent at 2 and 30 months. Relative risks showed significant gender differences between bereaved parents at all four interviews for anxiety/depression. When this outcome was extended to include heavy drinking in addition to anxiety/depression, these differences diminished and were significant only at 2 and 8 months. CONCLUSION. Female responses are longer lasting and reflected by elevated levels of anxiety/depression. Male responses equally involve anxiety, depression and heavy alcohol consumption.

Objective: We proposed to measure part of the natural history of grief by determining the changes in the psychological symptoms experienced by bereaved parents over the 8 months after the loss of an infant from sudden infant death syndrome (SIDS), neonatal death (NND), or stillbirth (SB). Parents were interviewed twice, at 2 and 8 months after the loss., Methodology: A total of 220 bereaved families (45 SIDS, 93 NND, and 82 SB) were compared with 226 control families who had a live born child. Comparison was based on responses to a standardized measure of anxiety and depression (Delusions-Symptoms-States Inventory)., Results: For separate cross-sectional comparison at both 2 and 8 months, significant differences were noted in the frequency of maternal symptoms of anxiety and depression between bereaved and control groups (P < .001). Such differences were present for paternal anxiety and depression at 2 months, but not 8 months. A second series of analysis examined longitudinal changes in symptom frequency between 2 and 8 months for each bereaved group. For mothers, the changes were significant for anxiety and depression: SIDS and NND (P < .001), SB (P < .01). For fathers, the changes for anxiety and depression in SIDS were P < .01; NND, P < .05 for anxiety and P < .01 per depression; changes were not significant for SB. At 2 months, relative risks for symptoms of maternal anxiety were significant for all three bereaved groups: SIDS, 22.4; NND, 5.4; and SB, 5.1. Comparable significant figures at 8 months were: SIDS, 5.5; NND, 3.9; and SB, 3.0, respectively. For depression the results for 2 months were: SIDS, 8.6; NND, 5.9; and SB, 6.7 (all significant) while at 8 months the results were: SIDS, 5.1; NND, 3.8; and SB, 2.4 (SB group not significant). For fathers the relevant risks were generally lower. At 2 months, anxiety levels were higher than controls in all three groups, and for depression in the SIDS and SB groups. At 8 months, significant results persisted only in the SB group., Conclusion: These data indicate that bereaved parents have a marked reduction in the symptoms of mental illness over the first 8 months after the loss. Although the changes over time are significant for both mothers and fathers, mothers at 8 months still demonstrated higher levels of anxiety and depression when compared with controls. These levels of symptoms are far less evident for fathers at 8 months.

The behaviour of bereaved parents with respect to their drug and alcohol ingestion was examined 2 months following the loss of an infant from stillbirth (SB) neonatal death (NND) or sudden infant death syndrome (SIDS). Responses from bereaved families (99 SB, 109 NND, 52 SIDS) were compared with 252 control families (who had a liveborn infant). There was no difference in self-medication using aspirin as the example. The use of sedative drugs was significantly higher in all bereaved mothers (but especially the SIDS group). Use of sedatives by fathers was significantly higher only in the SIDS group. There was also a greater frequency of heavy drinking of mothers in all the bereaved groups and fathers in the SIDS group. These results have implications for the understanding and care of families following infant loss.