Perinatal loss in Tanzania: Perspectives of maternal-child healthcare providers

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Abstract

Over 98% of stillbirths and neonatal deaths occur in Low- and Middle-Income Countries, such as Tanzania. Despite the profound burden of perinatal loss in these regions, access to facility or community-based palliative and psychosocial care is poor and understudied. In this study we explore perinatal loss through the lens of front-line healthcare providers, to better understand the knowledge and beliefs that guide their engagement with bereaved families. A Knowledge Attitudes and Practices survey addressing perinatal loss in Tanzania was developed, translated into Swahili, and administered over a 4-month period to healthcare professionals working at the Kilimanjaro Christian Medical Center (KCMC). Results were entered into REDCap and analyzed in R Studio. 74 providers completed the survey. Pediatric providers saw a yearly average of 5 stillbirths and 32.7 neonatal deaths. Obstetric providers saw an average of 11.5 stillbirths and 13.12 neonatal deaths. Most providers would provide resuscitation beginning at 28 weeks gestational age. Respondents estimated that a 50% chance of survival for a newborn occurred at 28 weeks both nationally and at KCMC. Most providers felt that stillbirth and neonatal mortality were not the mother’s fault (78.4% and 81.1%). However, nearly half (44.6%) felt that stillbirth reflects negatively on the woman and 62.2% agreed that women are at higher risk of abuse or abandonment after stillbirth. A majority perceived that women wanted hold their child after stillbirth (63.0%) or neonatal death (70.3%). Overall, this study found that providers at KCMC perceived that women are at greater risk of psychosocial or physical harm following perinatal loss. How women can best be supported by both the health system and their community remains unclear. More research on perinatal loss and bereavement in LMICs is needed to inform patient-level and health-systems interventions addressing care gaps unique to resource-limited or non-western settings.

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Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

Paul A. Harris, Robert Taylor, Robert Thielke … (2009)

Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.

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The REDCap consortium: Building an international community of software platform partners

Paul Harris, Robert Taylor, Brenda Minor … (2019)

The Research Electronic Data Capture (REDCap) data management platform was developed in 2004 to address an institutional need at Vanderbilt University, then shared with a limited number of adopting sites beginning in 2006. Given bi-directional benefit in early sharing experiments, we created a broader consortium sharing and support model for any academic, non-profit, or government partner wishing to adopt the software. Our sharing framework and consortium-based support model have evolved over time along with the size of the consortium (currently more than 3200 REDCap partners across 128 countries). While the "REDCap Consortium" model represents only one example of how to build and disseminate a software platform, lessons learned from our approach may assist other research institutions seeking to build and disseminate innovative technologies.

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Global, regional, and national estimates of levels of preterm birth in 2014: a systematic review and modelling analysis

Saifon Chawanpaiboon, Joshua P. Vogel, Ann-Beth Moller … (2018)

Summary Background Preterm birth is the leading cause of death in children younger than 5 years worldwide. Although preterm survival rates have increased in high-income countries, preterm newborns still die because of a lack of adequate newborn care in many low-income and middle-income countries. We estimated global, regional, and national rates of preterm birth in 2014, with trends over time for some selected countries. Methods We systematically searched for data on preterm birth for 194 WHO Member States from 1990 to 2014 in databases of national civil registration and vital statistics (CRVS). We also searched for population-representative surveys and research studies for countries with no or limited CRVS data. For 38 countries with high-quality data for preterm births in 2014, data are reported directly. For countries with at least three data points between 1990 and 2014, we used a linear mixed regression model to estimate preterm birth rates. We also calculated regional and global estimates of preterm birth for 2014. Findings We identified 1241 data points across 107 countries. The estimated global preterm birth rate for 2014 was 10·6% (uncertainty interval 9·0–12·0), equating to an estimated 14·84 million (12·65 million–16·73 million) live preterm births in 2014. 12· 0 million (81·1%) of these preterm births occurred in Asia and sub-Saharan Africa. Regional preterm birth rates for 2014 ranged from 13·4% (6·3–30·9) in North Africa to 8·7% (6·3–13·3) in Europe. India, China, Nigeria, Bangladesh, and Indonesia accounted for 57·9 million (41×4%) of 139·9 million livebirths and 6·6 million (44×6%) of preterm births globally in 2014. Of the 38 countries with high-quality data, preterm birth rates have increased since 2000 in 26 countries and decreased in 12 countries. Globally, we estimated that the preterm birth rate was 9×8% (8×3–10×9) in 2000, and 10×6% (9×0–12×0) in 2014. Interpretation Preterm birth remains a crucial issue in child mortality and improving quality of maternal and newborn care. To better understand the epidemiology of preterm birth, the quality and volume of data needs to be improved, including standardisation of definitions, measurement, and reporting. Funding WHO and the March of Dimes.