Looking after bubba for all our mob: Aboriginal and Torres Strait Islander community experiences and perceptions of stillbirth.

The stillbirth rate among Aboriginal and Torres Strait Islander women and communities in Australia is around double that of non-Indigenous women. While the development of effective prevention strategies during pregnancy and improving care following stillbirth for women and families in communities has become a national priority, there has been limited progress in stillbirth disparities. With community permission, this study aimed to gain a better understanding of community experiences, perceptions, and priorities around stillbirth. We undertook an Indigenous researcher-led, qualitative study, with community consultations guided by a cultural protection protocol and within an unstructured research framework. A total of 18 communities were consulted face-to-face through yarning interviews, focus groups and workshops. This included 54 community member and 159 health professional participants across remote, regional, and urban areas of Queensland, Western Australia, Victoria, South Australia, and Northern Territory. Thematic analysis of consultation data identified common themes across five focus/priority areas to address stillbirth: Stillbirth or Sorry Business Baby care needs to be family-centered; using Indigenous "ways of knowing, being, and doing" to ensure cultural safety; application of Birthing on Country principles to maternal and perinatal care; and yarning approaches to improve communication and learning or education. The results underscore the critical need to co-design evidence-based, culturally appropriate, and community-acceptable resources to help reduce existing disparities in stillbirth rates.

Adverse childhood experiences, the risk of pregnancy complications and adverse pregnancy outcomes: a systematic review and meta-analysis.

BACKGROUND: Adverse childhood experiences (ACEs) have a profound negative impact on health. However, the strength of the association between ACEs and pregnancy complications and adverse pregnancy outcomes is not well quantified or understood. OBJECTIVE: To conduct a systematic review and meta-analysis of the association between ACEs and risk of pregnancy complications and adverse pregnancy outcomes. SEARCH STRATEGY: A comprehensive search was conducted using PubMed, Embase, CINAHL, PsycINFO, ClinicalTrials.gov and Google scholar up to July 2022. DATA COLLECTION AND ANALYSIS: Two reviewers independently conducted the screening and quality appraisal using a validated tool. Meta-analysis using the quality-effects model on the reported odds ratio (OR) was conducted. Heterogeneity and inconsistency were examined using the I2 statistics. RESULTS: 32 studies from 1508 met a priori inclusion criteria for systematic review, with 21 included in the meta-analysis. Pooled analyses showed that exposure to ACEs increased the risk of pregnancy complications (OR 1.37, 95% CI 1.20 to 1.57) and adverse pregnancy outcomes (OR 1.31, 95% CI 1.17 to 1.47). In sub-group analysis, maternal ACEs were associated with gestational diabetes mellitus (OR 1.39, 95% CI 1.11 to 1.74), antenatal depression (OR 1.59, 95% CI 1.15 to 2.20), low offspring birth weight (OR 1.27, 95% CI 1.02 to 1.47), and preterm delivery (OR 1.41, 95% CI 1.16 to 1.71). CONCLUSION: The results suggest that exposure to ACEs increases the risk of pregnancy complications and adverse pregnancy outcomes. Preventive strategies, screening and trauma-informed care need to be examined to improve maternal and child health.

Validation of a tool for determining the clinical utility of stillbirth investigations.

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.

Attitudes of Australian breast cancer patients toward the secondary use of administrative and clinical trial data.

AIM: Little is known about the attitudes of Australian patients with a history of breast cancer toward the reuse of administrative health data and clinical trial data. Issues of consent, privacy, and information security are key to the discussion. Cancer care and research provides an opportune setting to develop an understanding of attitudes toward data sharing and reuse in individuals with a history of breast cancer. METHODS: An anonymous, online questionnaire for individuals with a history or diagnosis of breast cancer was distributed by two peak bodies (Breast Cancer Trials [BCT] and Breast Cancer Network of Australia [BCNA]) to their memberships between July 14, 2020 and October 17, 2020. Results were captured in RedCap; data analysis was undertaken using Stata, and a thematic analysis of free text responses was undertaken using NVivo. RESULTS: One hundred and thirty-two complete responses were received. Twenty-three percent of respondents had participated in a clinical trial, and 12% were currently receiving treatment (chemotherapy, radiotherapy, surgery, or endocrine). Respondents were supportive of the secondary use of de-identified administrative health data and clinical trial data, but showed concern about data security and privacy. Respondents emphasized that the reuse of data should be for improved societal health outcomes, not profit. Many assumed secondary analysis was already undertaken on de-identified administrative health data and clinical trial data. CONCLUSIONS: Respondents were supportive of the secondary use of de-identified administrative health and clinal trial data within the established bounds of good clinical practice and ethical oversight.

Living with Loss: study protocol for a randomized controlled trial evaluating an internet-based perinatal bereavement program for parents following stillbirth and neonatal death.

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.

Is care of stillborn babies and their parents respectful? Results from an international online survey.

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.

Effect of Cancer Pain Guideline Implementation on Pain Outcomes Among Adult Outpatients With Cancer-Related Pain: A Stepped Wedge Cluster Randomized Trial.

Importance: An evidence-practice gap exists for cancer pain management, and cancer pain remains prevalent and disabling. Objectives: To evaluate the capacity of 3 cancer pain guideline implementation strategies to improve pain-related outcomes for patients attending oncology and palliative care outpatient services. Design, Setting, and Participants: A pragmatic, stepped wedge, cluster-randomized, nonblinded, clinical trial was conducted between 2014 and 2019. The clusters were cancer centers in Australia providing oncology and palliative care outpatient clinics. Participants included a consecutive cohort of adult outpatients with advanced cancer and a worst pain severity score of 2 or more out of 10 on a numeric rating scale (NRS). Data were collected between August 2015 and May 2019. Data were analyzed July to October 2019 and reanalyzed November to December 2021. Interventions: Guideline implementation strategies at the cluster, health professional, and patient levels introduced with the support of a clinical champion. Main Outcomes and Measures: The primary measure of effect was the percentage of participants initially screened as having moderate to severe worst pain (NRS ≥ 5) who experienced a clinically important improvement of 30% or more 1 week later. Secondary outcomes included mean average pain, patient empowerment, fidelity to the intervention, and quality of life and were measured in all participants with a pain score of 2 or more 10 at weeks 1, 2, and 4. Results: Of 8099 patients screened at 6 clusters, 1564 were eligible, and 359 were recruited during the control phase (mean [SD] age, 64.2 [12.1] years; 196 men [55%]) and 329 during the intervention phase (mean [SD] age, 63.6 [12.7] years; 155 men [47%]), with no significant differences between phases on baseline measures. The mean (SD) baseline worst pain scores were 5.0 (2.6) and 4.9 (2.6) for control and intervention phases, respectively. The mean (SD) baseline average pain scores were 3.5 (2.1) for both groups. For the primary outcome, the proportions of participants with a 30% or greater reduction in a pain score of 5 or more of 10 at baseline were similar in the control and intervention phases (31 of 280 participants [11.9%] vs 30 of 264 participants [11.8%]; OR, 1.12; 95% CI, 0.79-1.60; P = .51). No significant differences were found in secondary outcomes between phases. Fidelity to the intervention was low. Conclusions and Relevance: A suite of implementation strategies was insufficient to improve pain-related outcomes for outpatients with cancer-related pain. Further evaluation is needed to determine the required clinical resources needed to enable wide-scale uptake of the fundamental elements of cancer pain care. Ongoing quality improvement activities should be supported to improve sustainability.

Perinatal bereavement care during COVID-19 in Australian maternity settings.

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.

Multicountry study protocol of COCOON: COntinuing Care in COVID-19 Outbreak global survey of New, expectant, and bereaved parent experiences.

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.

Building a sustainable rural physician workforce.

CHAPTER 1: CHARACTERISING AUSTRALIA'S RURAL SPECIALIST PHYSICIAN WORKFORCE: THE PROFESSIONAL PROFILE AND PROFESSIONAL SATISFACTION OF JUNIOR DOCTORS AND CONSULTANTS: Objective: To assess differences in the demographic characteristics, professional profile and professional satisfaction of rural and metropolitan junior physicians and physician consultants in Australia. DESIGN, SETTING AND PARTICIPANTS: Cross-sectional, population level national survey of the Medicine in Australia: Balancing Employment and Life longitudinal cohort study (collected 2008-2016). Participants were specialist physicians from four career stage groups: pre-registrars (physician intent); registrars; new consultants (< 5 years since Fellowship); and consultants. MAIN OUTCOME MEASURES: Level of professional satisfaction across various job aspects, such as hours worked, working conditions, support networks and educational opportunities, comparing rural and metropolitan based physicians. RESULTS: Participants included 1587 pre-registrars (15% rural), 1745 physician registrars (9% rural), 421 new consultants (20% rural) and 1143 consultants (13% rural). Rural physicians of all career stages demonstrated equivalent professional satisfaction across most job aspects, compared with metropolitan physician counterparts. Some examples of differences in satisfaction included rural pre-registrars being less likely to agree they had good access to support and supervision from qualified consultants (odds ratio [OR], 0.6; 95% CI, 0.3-0.9) and rural consultants being more likely to agree they had a poorer professional support network (OR, 1.9; 95% CI, 1.2-2.9). In terms of demographics, relatively more rural physicians had a rural background or were trained overseas. Although most junior physicians were women, female consultants were less likely to be working in a rural location (OR, 0.6; 95% CI, 0.4-0.8). CONCLUSION: Junior physicians in metropolitan or rural settings have a similar professional experience, which is important in attracting future trainees. Increased opportunities for rural training should be prioritised, along with addressing concerns about the professional isolation and poorer support network of those in rural areas, not only among junior doctors but also consultants. Finally, making rural practice more attractive to female junior physicians could greatly improve the consultant physician distribution. CHAPTER 2: GENERAL PHYSICIANS AND PAEDIATRICIANS IN RURAL AUSTRALIA: THE SOCIAL CONSTRUCTION OF PROFESSIONAL IDENTITY: Objective: To explore the construction of professional identity among general physicians and paediatricians working in non-metropolitan areas. DESIGN, SETTING AND PARTICIPANTS: In-depth qualitative interviews were conducted with general physicians and paediatricians, plus informants from specialist colleges, government agencies and academia who were involved in policy and programs for the training and recruitment of specialists in rural locations across three states and two territories. This research is part of the Training Pathways and Professional Support for Building a Rural Physician Workforce Study, 2018-19. MAIN OUTCOME MEASURES: Individual and collective descriptors of professional identity. RESULTS: We interviewed 36 key informants. Professional identity for general physicians and paediatricians working in regional, rural and remote Australia is grounded in the breadth of their training, but qualified by location - geographic location, population served or specific location, where social and cultural context specifically shapes practice. General physicians and paediatricians were deeply engaged with their local community and its economic vulnerability, and they described the population size and dynamics of local economies as determinants of viable practice. They often complemented their practice with formal or informal training in areas of special interest, but balanced their practice against subspecialist availability, also dependent on demographics. While valuing their professional roles, they showed limited inclination for industrial organisation. CONCLUSION: Despite limited consensus on identity descriptors, rural general physicians and paediatricians highly value generalism and their rural engagement. The structural and geographic bias that preferences urban areas will need to be addressed to further develop coordinated strategies for advanced training in rural contexts, for which collective identity is integral. CHAPTER 3: SUSTAINABLE RURAL PHYSICIAN TRAINING: LEADERSHIP IN A FRAGILE ENVIRONMENT: Objectives: To understand Royal Australasian College of Physicians (RACP) training contexts, including supervisor and trainee perspectives, and to identify contributors to the sustainability of training sites, including training quality. DESIGN, SETTING AND PARTICIPANTS: A cross-sectional mixed-methods design was used. A national sample of RACP trainees and Fellows completed online surveys. Survey respondents who indicated willingness to participate in interviews were purposively recruited to cover perspectives from a range of geographic, demographic and training context parameters. MAIN OUTCOME MEASURES: Fellows' and trainees' work and life satisfaction, and their experiences of supervision and training, respectively, by geographic location. RESULTS: Fellows and trainees reported high levels of satisfaction, with one exception - inner regional Fellows reported lower satisfaction regarding opportunities to use their abilities. Not having a good support network was associated with lower satisfaction. Our qualitative findings indicate that a culture of undermining rural practice is prevalent and that good leadership at all levels is important to reduce negative impacts on supervisor and trainee availability, site accreditation and viability. Trainees described challenges in navigating training pathways, ensuring career development, and having the flexibility to meet family needs. The small number of Fellows in some sites poses challenges for supervisors and trainees and results in a blurring of roles; accreditation is an obstacle to provision of training at rural sites; and the overlap between service and training roles can be difficult for supervisors. CONCLUSION: Our qualitative findings emphasise the distinctive nature of regional specialist training, which can make it a fragile environment. Leadership at all levels is critical to sustaining accreditation and support for supervisors and trainees. CHAPTER 4: PRINCIPLES TO GUIDE TRAINING AND PROFESSIONAL SUPPORT FOR A SUSTAINABLE RURAL SPECIALIST PHYSICIAN WORKFORCE: Objective: To draw on research conducted in the Building a Rural Physician Workforce project, the first national study on rural specialist physicians, to define a set of principles applicable to guiding training and professional support action. DESIGN: We used elements of the Delphi approach for systematic data collection and codesign, and applied a hybrid participatory action planning approach to achieve consensus on a set of principles. RESULTS: Eight interconnected foundational principles built around rural regions and rural people were identified: FP1, grow your own "connected to" place; FP2, select trainees invested in rural practice; FP3, ground training in community need; FP4, rural immersion - not exposure; FP5, optimise and invest in general medicine; FP6, include service and academic learning components; FP7, join up the steps in rural training; and FP8, plan sustainable specialist roles. CONCLUSION: These eight principles can guide training and professional support to build a sustainable rural physician workforce. Application of the principles, and coordinated action by stakeholders and the responsible organisations, are needed at national, state and local levels to achieve a sustainable rural physician workforce.

Gaps in Care and Support for Patients With Advanced Breast Cancer: A Report From the Advanced Breast Cancer Global Alliance.

PURPOSE: Although new therapeutic options continue to improve disease-related outcomes in advanced breast cancer (ABC), enhanced focus is needed to improve quality of life for patients currently living with ABC. METHODS: In November 2019, a multidisciplinary workshop to explore patient perceptions of their information and support needs was held at the ABC Global Alliance Annual Meeting in Lisbon, Portugal. Ninety-two attendees from 27 countries participated in the workshop. RESULTS: Several key unmet needs were identified and discussed in the workshop, including the following: (1) Significant patient knowledge gaps exist related to the diagnosis and management of ABC, and the availability of patient-focused information to support these gaps in knowledge remains limited. (2) The development of meaningful relationships between patients and health care professionals, and the role of patients in decision making, is often overlooked for patients with ABC. (3) Multidisciplinary care approaches are crucial for patients with ABC; however, these often lack effective coordination. (4) Access to clinical trials for ABC also remains limited. (5) Caregivers, friends, and family members do not receive sufficient guidance to support patients with ABC and manage their own well-being. CONCLUSION: The variety of unmet needs explored in the workshop demonstrates that patients with ABC still face considerable challenges related to quality of care and support, which will not be resolved until tangible action is taken. Issues highlighted in the workshop should be prioritized by working groups to shape the development of community-based solutions. There is a need for the global community to act proactively to maximize awareness of these ongoing unmet needs and existing resources, while socializing and building new initiatives and resources that will help to close these gaps for patients.

A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent.

BACKGROUND: We aimed to synthesise data on issues related to stakeholder perceptions of consent for the use of secondary data. To better understand the current literature available, we conducted a systematic literature review of healthcare consumer attitudes towards the secondary use and sharing of health administrative and clinical trial data. METHODS: EMBASE/MEDLINE, Cochrane Library, PubMed, CINAHL, Informit Health Collection, PROSPERO Database of Systematic Reviews, PsycINFO and ProQuest databases were searched. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design or disease setting. One author screened articles for eligibility and two authors were involved in the full-text review process. Conflicts were resolved by consensus. Quality and bias were assessed using the QualSyst criteria for qualitative studies. RESULTS: This paper focuses on a subset of 47 articles identified from the wider search and focuses on the issue of consent. Issues related to privacy, trust and transparency, and attitudes of healthcare professionals and researchers to secondary use and sharing of data have been dealt with in previous publications. Studies included a total of 216,149 respondents. Results indicate that respondents are generally supportive of using health data for research, particularly if the data is de-identified or anonymised. The requirement by participants to obtain consent prior to the use of health data for research was not universal, nor is the requirement for this always supported by legislation. Many respondents believed that either no consent or being informed of the research, but not providing additional consent, were sufficient. CONCLUSIONS: These results indicate that individuals should be provided with information and choice about how their health data is used and, where feasible, a mechanism to opt-out should be provided. To increase the acceptability of using health data for research, health organisations and data custodians must provide individuals with concise information about data protection mechanisms and under what circumstances their data may be used and by whom. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018110559 (update June 2020).

Parents' experiences of care offered after stillbirth: An international online survey of high and middle-income countries.

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.

Stillbirth in Australia 1: The road to now: Two decades of stillbirth research and advocacy in Australia.

Stillbirth is a major public health problem with an enormous mortality burden and psychosocial impact on parents, families and the wider community both globally and in Australia. In 2015, Australia's late gestation stillbirth rate was over 30% higher than that of the best-performing countries globally, highlighting the urgent need for action. We present an overview of the foundations which led to the establishment of Australia's NHMRC Centre of Research Excellence in Stillbirth (Stillbirth CRE) in 2017 and highlight key activities in the following areas: Opportunities to expand and improve collaborations between research teams; Supporting the conduct and development of innovative, high quality, collaborative research that incorporates a strong parent voice; Promoting effective translation of research into health policy and/or practice; and the Regional and global work of the Stillbirth CRE. We highlight the first-ever Senate Inquiry into Stillbirth in Australia in 2018. These events ultimately led to the development of a National Stillbirth Action and Implementation Plan for Australia with the aims of reducing stillbirth rates by 20% over the next five years, reducing the disparity in stillbirth rates between advantaged and disadvantaged communities, and improving care for all families who experience this loss.

Addressing stillbirth inequities in Australia: Steps towards a better future.

Persistent disparities in stillbirth risk and care are present in Australia. Eliminating these disparities is possible with a commitment to enhancing and scaling up models of culturally safe maternity care shown to be effective for Aboriginal and Torres Strait Islander women and those of migrant and refugee backgrounds. Campaigns to improve public awareness of stillbirth also play an important role in reducing stillbirth risk and consequences. To achieve reach and impact in communities at risk, messaging needs to be framed around the social and cultural context of women's lives. Here we describe important initiatives underway within the Stillbirth Centre of Research Excellence to develop a coordinated national approach to stillbirth prevention and care in communities that bear a disproportionate burden of stillbirth.

Stillbirth in Australia 5: Making respectful care after stillbirth a reality: The quest for parent-centred care.

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.

A systematic literature review of researchers' and healthcare professionals' attitudes towards the secondary use and sharing of health administrative and clinical trial data.

A systematic literature review of researchers and healthcare professionals' attitudes towards the secondary use and sharing of health administrative and clinical trial data was conducted using electronic data searching. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design, or disease setting. Two authors were involved in all stages of the review process; conflicts were resolved by consensus. Data was extracted independently using a pre-piloted data extraction template. Quality and bias were assessed using the QualSyst criteria for qualitative studies. Eighteen eligible articles were identified, and articles were categorised into four key themes: barriers, facilitators, access, and ownership; 14 subthemes were identified. While respondents were generally supportive of data sharing, concerns were expressed about access to data, data storage infrastructure, and consent. Perceptions of data ownership and acknowledgement, trust, and policy frameworks influenced sharing practice, as did age, discipline, professional focus, and world region. Young researchers were less willing to share data; they were willing to share in circumstances where they were acknowledged. While there is a general consensus that increased data sharing in health is beneficial to the wider scientific community, substantial barriers remain. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018110559.

A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency.

We aimed to synthesise data on issues related to stakeholder perceptions of privacy, trust, and transparency in use of secondary data. A systematic literature review of healthcare consumer attitudes towards the secondary use and sharing of health administrative and clinical trial data was conducted. EMBASE/MEDLINE, Cochrane Library, PubMed, CINAHL, Informit Health Collection, PROSPERO Database of Systematic Reviews, PsycINFO, and ProQuest databases were searched. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design or disease setting. One author screened articles for eligibility, and two authors were involved in the full text review process. Data was extracted using a pre-piloted data extraction template by one author and checked by another. Conflicts were resolved by consensus. Quality and bias were assessed using the QualSyst criteria for qualitative and quantitative studies. This paper focuses on a subset of 35 articles identified from the wider search which focus on issues of privacy, trust, and transparency. Studies included a total of 56,365 respondents. Results of this systematic literature review indicate that while respondents identified advantages in sharing health data, concerns relating to trust, transparency, and privacy remain. Organisations collecting health data and those who seek to share data or undertake secondary data analysis should continue to develop trust, transparency, and privacy with healthcare consumers through open dialogue and education. Consideration should be given to these issues at all stages of data collection including the conception, design, and implementation phases. While individuals understand the benefits of health data sharing for research purposes, ensuring a balance between public benefit and individual privacy is essential. Researchers and those undertaking secondary data analysis need to be cognisant of these key issues at all stages of their research. Systematic review registration: PROSPERO registration number CRD42018110559 (update June 2020).

The RESPECT Study for consensus on global bereavement care after stillbirth.

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.

Clinical practice guidelines for perinatal bereavement care - An overview.

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.