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Background: Evidence to guide intrapartum care when an unborn baby has died is limited., Aims: To explore parents' experiences of care during labour of an antepartum stillbirth., Materials and Methods: Semi-structured interviews with 18 bereaved parents from across Australia. Content analysis was conducted., Findings: Two broad themes were identified: 'explaining every step' and 'helping us feel like parents.' Sub-themes under the first broad theme, 'explaining every step', were 'how and when information was given' and 'what happens next.' 'Like any other parent', 'feeling the pain' and 'everything is clouded' were sub-themes of the second broad theme. These findings mapped to current Australian clinical practice guidelines for bereavement care around stillbirth and neonatal death, ie good communication, recognition of parenthood, shared decision making and effective support., Conclusions: This study on parents' experiences of labour with a fetal death in utero brings an important perspective to intrapartum care for this group. As far as we are aware, this study is the first to focus solely on this aspect of care. Our findings could be readily mapped to the four perinatal bereavement care goals. Parents wanted care providers to facilitate their choices, their sense of control, their autonomy and their agency. They wanted to feel that they had received the 'best' care available., (© 2023 The Authors. Australian and New Zealand Journal of Obstetrics and Gynaecology published by John Wiley & Sons Australia, Ltd on behalf of Royal Australian and New Zealand College of Obstetricians and Gynaecologists.)

Introduction: Worldwide, neonatal jaundice accounts for considerable morbidity and mortality. Although severe adverse outcomes, such as hyperbilirubinaemia and kernicterus, are uncommon in high-income countries, these outcomes do occur, have enormous lifelong personal, health and social costs, and may be preventable. Evidence-based practice commonly relies on clinical guidelines; however, their implementation can be difficult. Implementation of neonatal jaundice care has been adversely affected by issues with professional boundaries, competing professional priorities and poor understanding of neonatal jaundice. This paper focuses on the perceptions and experiences of Australian health professionals involved in the management of neonatal jaundice., Methods: Using a qualitative descriptive approach, semistructured interviews were undertaken to gain understanding of the experiences of health professionals in Australia across the scope of care for jaundiced newborns through an interpretivist approach and to identify possible gaps in the delivery of evidence-based care. Health professionals from a range of disciplines and care settings were recruited by purposive maximum variation sampling. Interviews were conducted face-to-face or by telephone with detailed notes taken and a field journal maintained. Interview scripts were verified by participants and imported into NVivo software. Data were analysed for major themes according to type and contexts of practice., Results: Forty-one health professionals from six broad discipline areas were interviewed. Two major themes and explanatory subthemes were found. The first theme, falling through the gaps , highlighted gaps in evidence-based care, as described by four explanatory subthemes: professional boundaries, blindness to possibility of adverse outcomes, competing professional development priorities and unintended consequences.The second major theme, we know what should happen-but how?, described participant perceptions that it was known what was required to improve care but how to achieve such changes was unclear. The two subthemes are: improvements in education and training, and standardised policies and protocols., Conclusions: Multiple barriers to the provision of evidence-based care related to neonatal jaundice management are experienced by health professionals in Australia. Clinical guidelines are not sufficient to support health professionals deliver evidence-based care in the complex contexts in which they work. Implementation strategies for evidence-based practice need to take account of the experiences of health professionals and the challenges they face. Such strategies need to focus on improving collaboration between different disciplines for the well-being of those needing care. In the case of neonatal jaundice management, consideration is also needed in how to raise awareness of the importance of avoiding severe adverse outcomes, even when they might be rare, and how this might be done. Addressing issues that lead to disjointed care or poor knowledge of neonatal jaundice among health professionals is essential., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Involving patients and consumers in research design helps ensure relevance for those affected by the problem being investigated and can optimize recruitment to clinical trials. This is particularly important when conducting research involving pregnant women., Aims: We investigated women's motivations to participate in a hypothetical randomized control trial (RCT) of a third-trimester screening test for intrapartum fetal compromise (IFC) and adverse perinatal outcomes., Materials and Methods: Women attending for routine antenatal care at a tertiary center were invited to complete a short, anonymized patient acceptability survey. The survey was developed with the assistance of the Perinatal Society of Australia and New Zealand's Consumer Advisory Panel and consisted of Likert scales and open-ended questions. It was designed to ascertain women's responses to research issues, particularly the acceptability of being randomized to a non-revealed arm of a screening test RCT., Results: 100 pregnant women took part; 40% indicated that they would agree/strongly agree to participate in a hypothetical RCT regardless of whether they were given the result of a screening test and 31% were unsure. Randomization to either an intervention or control group was acceptable to 47%, 30% were unsure and 23% were not willing to be randomized. Reasons to participate included the desire to contribute to research and to improve pregnancy care., Conclusions: Participation in an RCT of a screening test for IFC involving non-disclosure of the test result was acceptable to a large minority of pregnant women. This finding supports the feasibility of conducting a large-scale study of this design.

Introduction: Globally, the COVID-19 pandemic has significantly disrupted the provision of healthcare and efficiency of healthcare systems and is likely to have profound implications for pregnant and postpartum women and their families including those who experience the tragedy of stillbirth or neonatal death. This study aims to understand the psychosocial impact of COVID-19 and the experiences of parents who have accessed maternity, neonatal and bereavement care services during this time., Methods and Analysis: An international, cross-sectional, online and/or telephone-based/face-to-face survey is being administered across 15 countries and available in 11 languages. New, expectant and bereaved parents during the COVID-19 pandemic will be recruited. Validated psychometric scales will be used to measure psychosocial well-being. Data will be analysed descriptively and by assessing multivariable associations of the outcomes with explanatory factors. In seven of these countries, bereaved parents will be recruited to a nested, qualitative interview study. The data will be analysed using a grounded theory analysis (for each country) and thematic framework analysis (for intercountry comparison) to gain further insights into their experiences., Ethics and Dissemination: Ethics approval for the multicountry online survey, COCOON, has been granted by the Mater Misericordiae Human Research Ethics Committee in Australia (reference number: AM/MML/63526). Ethics approval for the nested qualitative interview study, PUDDLES, has been granted by the King's College London Biomedical & Health Sciences, Dentistry, Medicine and Natural & Mathematical Sciences Research Ethics Subcommittee (reference number: HR-19/20-19455) in the UK. Local ethics committee approvals were granted in participating countries where required. Results of the study will be published in international peer-reviewed journals and through parent support organisations. Findings will contribute to our understanding of delivering maternity care services, particularly bereavement care, in high-income, lower middle-income and low-income countries during this or future health crises., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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., Tweetable Abstract: One in four experience disrespectful care after stillbirth. Parents want more time with providers and their babies, to talk and memory-make., (© 2022 John Wiley & Sons Ltd.)

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).)

This paper explores the critical roles of researchers in research involving vulnerable populations. Its purpose is to reflect on the complex nature of vulnerability of Bhutanese refugee women who had resettled in Australia involved in research looking at the barriers to accessing preventive cancer screening. First, we describe the vulnerabilities considered prior to the research study and the actions taken to protect participants while the study was conducted. Second, we discuss those vulnerabilities that we did not anticipate, but were subsequently revealed during the study and consequently included in the study findings. These vulnerabilities should be considered for future research involving similar populations. It is important for researchers to use appropriate research designs that enable the voice of vulnerable people to be heard and to use research strategies that ensure findings are robust and participants are protected and empowered. Potential implications include the development of research practices that take account of the sources of vulnerabilities and consideration of how different vulnerabilities can evolve and affect findings and research recommendations., (© 2021 John Wiley & Sons Ltd.)

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: 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.)