An assets-based approach to bereavement care

A survey of bereaved clients of four funeral providers in Australia confirms a public health model predicting that over half the group would demonstrate low risk of complicated grief, another third moderate risk, while a small minority would meet the criteria for prolonged grief disorder. The survey also shows differing patterns of need and sources of support for each of the three groups. While our findings support targeting the bereavement care provided by health services, our primary interest is in the care received by most bereaved people. Some is provided in the community through the everyday activities of healthcare professionals. Most comes from a range of people already involved in the everyday lives of those recently bereaved. We contend that the most effective way to provide bereavement care is to support these ‘everyday assets’, ensuring that their care is recognised, appreciated, and not disrupted by over-reach from professional services

Understanding mothers' decision-making needs for autopsy consent after stillbirth: Framework analysis of a large survey

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

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

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

After surgery: the effects of life-saving caesarean sections in Burkina Faso:BMC Pregnancy Childbirth

Background In African countries, caesarean sections are usually performed to save mothers and babies’ lives, sometimes in extremis and at considerable costs. Little is known about the health and lives of women once discharged after such surgery. We investigated the long-term effects of life-saving caesarean section on health, economic and social outcomes in Burkina Faso. Methods We conducted a 4 year prospective cohort study of women and their babies using mixed methods. The quantitative sample was selected in seven hospitals and included 950 women: 100 women with a caesarean section associated with near-miss complication (life-saving caesareans); 173 women with a vaginal birth associated with near-miss complication; and 677 women with uncomplicated vaginal childbirth. Structured interviews were conducted at 3 months, 6 months, 12 months and 3 and 4 years postpartum. These were supplemented by medical record data on delivery and physical examinations at 6 and 12 months postpartum. The lives and experiences of 21 women were documented ethnographically. Data were analysed with multivariable logistic regressions, using survival analysis and thematic analysis. Results The physical effects of life-saving caesareans appeared to be similar to women who had an uncomplicated childbirth, although 55 % of women with life-saving caesareans had another caesarean in their next pregnancy. The negative effects were generally economic, social and reproductive when compared to vaginal births, including increased debts (AOR = 3.91 (1.46–10.48) and sexual violence (AOR = 4.71 (1.04–21.3)) and lower fertility (AOR = 0.44 (0.24–0.80)) 4 years after life-saving caesareans. In the short and medium term, women with life-saving caesareans appeared to suffer increased psychological distress compared to uncomplicated births. They were more likely to use contraceptives (AOR = 5.95 (1.53–23.06); 3 months). Mortality of the index child was increased in both near-miss groups, independent of delivery mode. Ethnographic data suggest that these consequences are significant for Burkinabe women, whose well-being and social standing are mostly determined by their fertility, marriage strength and family links. Conclusions Life-saving caesareans have broad consequences beyond clinical sequelae. The recent policy to subsidise emergency obstetric care costs implemented in Burkina Faso should help avoid the majority of catastrophic costs, shown to be problematic for women undergoing emergency caesarean section

Necessidade de cuidado e desejo de participação no parto de gestantes residentes em Londrina-Paraná

A participação da mulher na tomada de decisão, nas ações de promoção à saúde, é um direito que deve ser respeitado. Este estudo buscou compreender a necessidade de cuidado e o desejo de participação nas decisões sobre o parto de gestantes de Londrina-PR. Utilizou-se a pesquisa fundamentada na fenomenologia social. As gestantes foram entrevistadas no período de agosto a novembro de 2008. Foram analisados 14 depoimentos, resultando na formação de quatro categorias: preferência pelo tipo de parto, insegurança, necessidade de cuidado e tomada de decisão no parto. Os resultados evidenciaram que, apesar de desejarem participar do seu parto e de verbalizarem suas necessidades, escolhas e preferências, as mulheres não encontram condições favoráveis para que suas necessidades de cuidado e o desejo de participação nas decisões sobre o parto sejam viabilizados; fato que interfere nas relações face a face e impede o direito à escolha informada em relação ao parto.Women's participation in decision making involving health care promotion is a right that should be respected. This study aimed to better understand the need for care and the desire to participate in delivery decisions among pregnant women in Londrina, PR, Brazil. This study was based on social phenomenology. The pregnant women were interviewed from August to November, 2008. Statements from 14 pregnant women were analyzed and were divided into four categories: type of delivery preference; insecurity; the need for care; and decision-making in delivery. Results showed that although women expressed their needs and their wish to participate in the decisions regarding their delivery, they did not find favorable conditions so that their care needs and desire to participate in delivery decisions were made possible, a fact which interferes in face-to-face relationships and impedes the right to informed choices with respect to the delivery process.La participación de la mujer en la toma de decisiones y en las acciones para promover la salud, es un derecho que debe ser respetado. Este estudio trata de comprender la necesidad de cuidado y el deseo de participar en las decisiones sobre el parto de las mujeres embarazadas residentes en Londrina-PR. Es una investigación basada en la fenomenología social. Las embarazadas fueron entrevistadas en el período de agosto a noviembre de 2008. Se analizaron 14 declaraciones, lo que resultó en la formación de cuatro categorías: preferencia por el tipo de parto, inseguridad, necesidad de atención y toma de decisiones en el parto. Los resultados mostraron que a pesar de desear participar de su parto y de verbalizar sus necesidades, opciones y preferencias, las mujeres no encontraron condiciones favorables para que sus necesidades de atención y el deseo de participar en las decisiones sobre el parto sean viabilizadas; hecho que interfiere en las relaciones cara a cara e impide el derecho a la elección informada en relación al parto

Evidence for perinatal and child health care guidelines in crisis settings: can Cochrane help?

<p>Abstract</p> <p>Background</p> <p>It is important that healthcare provided in crisis settings is based on the best available research evidence. We reviewed guidelines for child and perinatal health care in crisis situations to determine whether they were based on research evidence, whether Cochrane systematic reviews were available in the clinical areas addressed by these guidelines and whether summaries of these reviews were provided in Evidence Aid.</p> <p>Methods</p> <p>Broad internet searches were undertaken to identify relevant guidelines. Guidelines were appraised using AGREE and the clinical areas that were relevant to perinatal or child health were extracted. We searched The Cochrane Database of Systematic Reviews to identify potentially relevant reviews. For each review we determined how many trials were included, and how many were conducted in resource-limited settings.</p> <p>Results</p> <p>Six guidelines met selection criteria. None of the included guidelines were clearly based on research evidence. 198 Cochrane reviews were potentially relevant to the guidelines. These reviews predominantly addressed nutrient supplementation, breastfeeding, malaria, maternal hypertension, premature labour and prevention of HIV transmission. Most reviews included studies from developing settings. However for large portions of the guidelines, particularly health services delivery, there were no relevant reviews. Only 18 (9.1%) reviews have summaries in Evidence Aid.</p> <p>Conclusions</p> <p>We did not identify any evidence-based guidelines for perinatal and child health care in disaster settings. We found many Cochrane reviews that could contribute to the evidence-base supporting future guidelines. However there are important issues to be addressed in terms of the relevance of the available reviews and increasing the number of reviews addressing health care delivery.</p

Phylogenetic ctDNA analysis depicts early-stage lung cancer evolution.

The early detection of relapse following primary surgery for non-small-cell lung cancer and the characterization of emerging subclones, which seed metastatic sites, might offer new therapeutic approaches for limiting tumour recurrence. The ability to track the evolutionary dynamics of early-stage lung cancer non-invasively in circulating tumour DNA (ctDNA) has not yet been demonstrated. Here we use a tumour-specific phylogenetic approach to profile the ctDNA of the first 100 TRACERx (Tracking Non-Small-Cell Lung Cancer Evolution Through Therapy (Rx)) study participants, including one patient who was also recruited to the PEACE (Posthumous Evaluation of Advanced Cancer Environment) post-mortem study. We identify independent predictors of ctDNA release and analyse the tumour-volume detection limit. Through blinded profiling of postoperative plasma, we observe evidence of adjuvant chemotherapy resistance and identify patients who are very likely to experience recurrence of their lung cancer. Finally, we show that phylogenetic ctDNA profiling tracks the subclonal nature of lung cancer relapse and metastasis, providing a new approach for ctDNA-driven therapeutic studies