Ending preventable stillbirths and improving bereavement care: a scorecard for high- and upper-middle income countries.

BACKGROUND: Despite progress, stillbirth rates in many high- and upper-middle income countries remain high, and the majority of these deaths are preventable. We introduce the Ending Preventable Stillbirths (EPS) Scorecard for High- and Upper Middle-Income Countries, a tool to track progress against the Lancet's 2016 EPS Series Call to Action, fostering transparency, consistency and accountability. METHODS: The Scorecard for EPS in High- and Upper-Middle Income Countries was adapted from the Scorecard for EPS in Low-Income Countries, which includes 20 indicators to track progress against the eight Call to Action targets. The Scorecard for High- and Upper-Middle Income Countries includes 23 indicators tracking progress against these same Call to Action targets. For this inaugural version of the Scorecard, 13 high- and upper-middle income countries supplied data. Data were collated and compared between and within countries. RESULTS: Data were complete for 15 of 23 indicators (65%). Five key issues were identified: (1) there is wide variation in stillbirth rates and related perinatal outcomes, (2) definitions of stillbirth and related perinatal outcomes vary widely across countries, (3) data on key risk factors for stillbirth are often missing and equity is not consistently tracked, (4) most countries lack guidelines and targets for critical areas for stillbirth prevention and care after stillbirth and have not set a national stillbirth rate target, and (5) most countries do not have mechanisms in place for reduction of stigma or guidelines around bereavement care. CONCLUSIONS: This inaugural version of the Scorecard for High- and Upper-Middle Income Countries highlights important gaps in performance indicators for stillbirth both between and within countries. The Scorecard provides a basis for future assessment of progress and can be used to help hold individual countries accountable, especially for reducing stillbirth inequities in disadvantaged groups.

The Disenfranchisement of Perinatal Grief: How Silence, Silencing and Self-Censorship Complicate Bereavement (a Mixed Methods Study).

Based on an ethnographic and mixed-methods research design, the article explores the social and interactive processes of disenfranchisement of perinatal grief through the mechanisms of silence, silencing and self-censorship in encounters between bereaved women and the social milieu. The analysis finds that disenfranchisement results from the constriction of the social space of bereavement along various lines of discourse, cultural values, practice and materiality, that include: the passing of time (expectations of a quick 'recovery'); competing discourses of loss (simplistic-dominant vs. complex-subordinate meaning-making); the biometrics of pregnancy (lower gestational age being equated with less intense grief); gendered ideas of reproduction and feeling rules; asymmetries in social power; social spheres (hospital, home, community, support groups); socio-materialities and performance/ritual; and structural aspects of social and familial organization (gender, age, intergenerational and kin v. non-kin relations). These processes are intimately linked to the complication of grief by undermining support, meaning-making and continuing bonds.

Sedative administration in Spanish hospitals in the context of perinatal loss: findings from a mixed-methods study.

This article explores the contexts, processes and motivations behind the administration of sedatives (minor tranquilisers) in the time around perinatal loss. Using a mixed methods design, an online survey of 796 women and 13 narrative interviews were conducted. The participants had experienced a stillbirth or termination of pregnancy from 16 weeks or a neonatal death in Spanish hospitals. The quantitative (univariate and CHAID decision-tree) and qualitative (narrative-linguistic) analysis found that sedative administration was pervasive across care contexts and appears to be naturalised despite contradicting practice recommendations. Sedative administration was associated with emotional control and avoidance of loss, lack of accompaniment and on occasion with managing disruptive patients. Lack of informed consent was very common, with little explanation of side-effects prior to administration. In the participants' narratives, health professionals tended to construct sedatives as benign, but for some women the effects were counterproductive to loss and grief and related to persistent regrets about decisions. The study concludes that, in the context of perinatal loss, sedative administration was highly integrated into the fabric of medicalised care. As a socio-political and cultural practice underscored by gender-based care dynamics, there seems to be an imbalance between benefit and risk to women's welfare.

Beyond emotional support: predictors of satisfaction and perceived care quality following the death of a baby during pregnancy.

OBJECTIVES: To investigate which objective (actions/interventions) and subjective (perceptions of care quality) outcomes of care following stillbirth or termination of pregnancy predict perceived care quality. METHODS: A cross-sectional descriptive study using an anonymous online survey. The population was women who had experienced a stillbirth or termination of pregnancy from ≥16 weeks of gestation, in the Spanish health system. Multiple sequential regression analysis was used to identify predictors of perceived care quality (satisfaction, willingness to recommend, competence and ability to provide loss-focused care). RESULTS: Results from 610 women were analysed. A significant regression equation (p<0.001) was found in each of the objective only and objective-subjective models. In the case of overall care (satisfaction-recommend composite), 72.0% of variance (adj. R2) was explained. In general, subjective evaluations of care are more potent predictors of perceived care quality than objective care interventions (e.g. autopsy performed). Feeling free to 'express emotions', 'teamwork between doctors and nurses/midwives', and 'being well-informed of all steps and procedures' were the three strongest predictors, followed by perception of 'medical negligence'. Information provision and loss-focused interventions had the weakest influence, except in the specific 'loss-focused' model. CONCLUSIONS: The results indicate that the 'atmosphere' of care is a transversal dimension related to the context of loss and trauma and has the single greatest influence on perceptions of care quality. It is necessary to use a specific 'loss-focused' care variable to adequately capture perceptions of the quality of bereavement care and a custom scale to measure the influence of care interventions on perceived quality.

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.

Care quality following intrauterine death in Spanish hospitals: results from an online survey.

BACKGROUND: The objective of the study was to evaluate practices in Spanish hospitals after intrauterine death in terms of medical/ technical care and bereavement support care. METHODS: A cross-sectional descriptive study using an online self-completion questionnaire. The population was defined as women who had experienced an intrauterine fetal death between sixteen weeks and birth, either through spontaneous late miscarriage/stillbirth or termination of pregnancy for medical reasons. Respondents were recruited through an online advertisement on a stillbirth charity website and social media. The analysis used Pearson's chi-squared (p ≤ 0.05) test of independence to cross-analyse for associations between objective measures of care quality and independent variables. RESULTS: Responses from 796 women were analysed. Half of the women (52.9%) had postmortem contact with their baby. 30.4% left the hospital with a least one linking object or a photograph. In 35.8% of cases parents weren't given any option to recover the body/remains. 22.9% of births ≥26 weeks gestation were by caesarean, with a significant (p < 0.001) difference between public hospitals (16.8%) and private hospitals (41.5%). 29.3% of respondents were not accompanied during the delivery. 48.0% of respondents recalled being administered sedatives at least once during the hospital stay. The autopsy rate in stillbirth cases (≥ 20 weeks) was 70.5% and 44.4% in cases of termination of pregnancy (all gestational ages). Consistent significant (p < 0.05) differences in care practices were found based on gestational age and type of hospital (public or private), but not to other variables related to socio-demographics, pregnancy history or details of the loss/death. Intrauterine deaths at earlier gestational ages received poorer quality care. CONCLUSIONS: Supportive healthcare following intrauterine death is important to women's experiences in the hospital and beneficial to the grief process. Many care practices that are standard in other high-income countries are not routine in Spanish hospitals. Providing such care is a relatively new phenomenon in the Spanish health system, the results provide a quality benchmark and identify a number of areas where hospitals could make improvements to care practices that should have important psychosocial benefits for women and their families.