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      Electronic data collection for multi-country, hospital-based, clinical observation of maternal and newborn care: EN-BIRTH study experiences

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          Abstract

          Background

          Observation of care at birth is challenging with multiple, rapid and potentially concurrent events occurring for mother, newborn and placenta. Design of electronic data (E-data) collection needs to account for these challenges. The Every Newborn Birth Indicators Research Tracking in Hospitals (EN-BIRTH) was an observational study to assess measurement of indicators for priority maternal and newborn interventions and took place in five hospitals in Bangladesh, Nepal and Tanzania (July 2017–July 2018). E-data tools were required to capture individually-linked, timed observation of care, data extraction from hospital register-records or case-notes, and exit-survey data from women.

          Methods

          To evaluate this process for EN-BIRTH, we employed a framework organised around five steps for E-data design, data collection and implementation. Using this framework, a mixed methods evaluation synthesised evidence from study documentation, standard operating procedures, stakeholder meetings and design workshops. We undertook focus group discussions with EN-BIRTH researchers to explore experiences from the three different country teams (November–December 2019). Results were organised according to the five a priori steps.

          Results

          In accordance with the five-step framework, we found: 1) Selection of data collection approach and software: user-centred design principles were applied to meet the challenges for observation of rapid, concurrent events around the time of birth with time-stamping. 2) Design of data collection tools and programming: required extensive pilot testing of tools to be user-focused and to include in-built error messages and data quality alerts. 3) Recruitment and training of data collectors: standardised with an interactive training package including pre/post-course assessment. 4) Data collection, quality assurance, and management: real-time quality assessments with a tracking dashboard and double observation/data extraction for a 5% case subset, were incorporated as part of quality assurance. Internet-based synchronisation during data collection posed intermittent challenges. 5) Data management, cleaning and analysis: E-data collection was perceived to improve data quality and reduce time cleaning.

          Conclusions

          The E-Data system, custom-built for EN-BIRTH, was valued by the site teams, particularly for time-stamped clinical observation of complex multiple simultaneous events at birth, without which the study objectives could not have been met. However before selection of a custom-built E-data tool, the development time, higher training and IT support needs, and connectivity challenges need to be considered against the proposed study or programme’s purpose, and currently available E-data tool options.

          Supplementary Information

          The online version contains supplementary material available at 10.1186/s12884-020-03426-5.

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          Most cited references31

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          National, regional, and global levels and trends in maternal mortality between 1990 and 2015 with scenario-based projections to 2030: a systematic analysis by the United Nations Maternal Mortality Estimation Inter-Agency Group

          Summary Background Millennium Development Goal (MDG) 5 calls for a reduction of 75% in the maternal mortality ratio (MMR) between 1990 and 2015. We estimated levels and trends in maternal mortality for 183 countries to assess progress made. Based on MMR estimates for 2015, we constructed scenario-based projections to highlight the accelerations needed to accomplish the Sustainable Development Goal (SDG) global target of less than 70 maternal deaths per 100,000 live births globally by 2030. Methods We updated the open access UN Maternal Mortality Estimation Inter-agency Group (MMEIG) database. Based upon nationally-representative data for 171 countries, we generated estimates of maternal mortality and related indicators with uncertainty intervals using a Bayesian model, which extends and refines the previous UN MMEIG estimation approach. The model combines the rate of change implied by a multilevel regression model with a time series model to capture data-driven changes in country-specific MMRs, and includes a data model to adjust for systematic and random errors associated with different data sources. Results The global MMR declined from 385 deaths per 100,000 live births (80% uncertainty interval ranges from 359 to 427) in 1990 to 216 (207 to 249) in 2015, corresponding to a relative decline of 43.9% (34.0 to 48.7) during the 25-year period, with 303,000 (291,000 to 349,000) maternal deaths globally in 2015. Regional progress in reducing the MMR since 1990 ranged from an annual rate of reduction of 1.8% (0 to 3.1) in the Caribbean to 5.0% (4.0 to 6.0) for Eastern Asia. Regional MMRs for 2015 range from 12 (11 to 14) for developed regions to 546 (511 to 652) for sub-Saharan Africa. Accelerated progress will be needed to achieve the SDG goal; countries will need to reduce their MMRs at an annual rate of reduction of at least 7.5%. Interpretation Despite global progress in reducing maternal mortality, immediate action is required to begin making progress towards the ambitious SDG 2030 target, and ultimately eliminating preventable maternal mortality. While the rates of reduction that are required to achieve country-specific SDG targets are ambitious for the great majority of high mortality countries, the experience and rates of change between 2000 and 2010 in selected countries–those with concerted efforts to reduce the MMR- provide inspiration as well as guidance on how to accomplish the acceleration necessary to substantially reduce preventable maternal deaths. Funding Funding from grant R-155-000-146-112 from the National University of Singapore supported the research by LA and SZ. AG is the recipient of a National Institute of Child Health and Human Development, grant # T32-HD007275. Funding also provided by USAID and HRP (the UNDP/UNFPA/UNICEF/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction).
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            The Mistreatment of Women during Childbirth in Health Facilities Globally: A Mixed-Methods Systematic Review

            Background Despite growing recognition of neglectful, abusive, and disrespectful treatment of women during childbirth in health facilities, there is no consensus at a global level on how these occurrences are defined and measured. This mixed-methods systematic review aims to synthesize qualitative and quantitative evidence on the mistreatment of women during childbirth in health facilities to inform the development of an evidence-based typology of the phenomenon. Methods and Findings We searched PubMed, CINAHL, and Embase databases and grey literature using a predetermined search strategy to identify qualitative, quantitative, and mixed-methods studies on the mistreatment of women during childbirth across all geographical and income-level settings. We used a thematic synthesis approach to synthesize the qualitative evidence and assessed the confidence in the qualitative review findings using the CERQual approach. In total, 65 studies were included from 34 countries. Qualitative findings were organized under seven domains: (1) physical abuse, (2) sexual abuse, (3) verbal abuse, (4) stigma and discrimination, (5) failure to meet professional standards of care, (6) poor rapport between women and providers, and (7) health system conditions and constraints. Due to high heterogeneity of the quantitative data, we were unable to conduct a meta-analysis; instead, we present descriptions of study characteristics, outcome measures, and results. Additional themes identified in the quantitative studies are integrated into the typology. Conclusions This systematic review presents a comprehensive, evidence-based typology of the mistreatment of women during childbirth in health facilities, and demonstrates that mistreatment can occur at the level of interaction between the woman and provider, as well as through systemic failures at the health facility and health system levels. We propose this typology be adopted to describe the phenomenon and be used to develop measurement tools and inform future research, programs, and interventions.
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              National, regional, and worldwide estimates of low birthweight in 2015, with trends from 2000: a systematic analysis

              Summary Background Low birthweight (LBW) of less than 2500 g is an important marker of maternal and fetal health, predicting mortality, stunting, and adult-onset chronic conditions. Global nutrition targets set at the World Health Assembly in 2012 include an ambitious 30% reduction in LBW prevalence between 2012 and 2025. Estimates to track progress towards this target are lacking; with this analysis, we aim to assist in setting a baseline against which to assess progress towards the achievement of the World Health Assembly targets. Methods We sought to identify all available LBW input data for livebirths for the years 2000–16. We considered population-based national or nationally representative datasets for inclusion if they contained information on birthweight or LBW prevalence for livebirths. A new method for survey adjustment was developed and used. For 57 countries with higher quality time-series data, we smoothed country-reported trends in birthweight data by use of B-spline regression. For all other countries, we estimated LBW prevalence and trends by use of a restricted maximum likelihood approach with country-level random effects. Uncertainty ranges were obtained through bootstrapping. Results were summed at the regional and worldwide level. Findings We collated 1447 country-years of birthweight data (281 million births) for 148 countries of 195 UN member states (47 countries had no data meeting inclusion criteria). The estimated worldwide LBW prevalence in 2015 was 14·6% (uncertainty range [UR] 12·4–17·1) compared with 17·5% (14·1–21·3) in 2000 (average annual reduction rate [AARR] 1·23%). In 2015, an estimated 20·5 million (UR 17·4–24·0 million) livebirths were LBW, 91% from low-and-middle income countries, mainly southern Asia (48%) and sub-Saharan Africa (24%). Interpretation Although these estimates suggest some progress in reducing LBW between 2000 and 2015, achieving the 2·74% AARR required between 2012 and 2025 to meet the global nutrition target will require more than doubling progress, involving both improved measurement and programme investments to address the causes of LBW throughout the lifecycle. Funding Bill & Melinda Gates Foundation, The Children's Investment Fund Foundation, United Nations Children's Fund (UNICEF), and WHO.
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                Author and article information

                Contributors
                Harriet.Ruysen@lshtm.ac.uk
                Journal
                BMC Pregnancy Childbirth
                BMC Pregnancy Childbirth
                BMC Pregnancy and Childbirth
                BioMed Central (London )
                1471-2393
                26 March 2021
                26 March 2021
                2021
                : 21
                Issue : Suppl 1 Issue sponsor : The Children’s Investment Fund Foundation (CIFF) are the main funder of the EN-BIRTH Study and funding is administered via The London School of Hygiene and Tropical Medicine. The Swedish Research Council specifically funded the Nepal site through Lifeline Nepal and Golden Community. Information about the source of funding for publication charges can be found in the individual articles. The articles have undergone the journal's standard peer review process for supplements. Supplement Editors were not involved in the peer review for any manuscripts that they co-authored. The Supplement Editors declare that they have no other competing interests.
                : 234
                Affiliations
                [1 ]GRID grid.8991.9, ISNI 0000 0004 0425 469X, Maternal, Adolescent, Reproductive & Child Health (MARCH) Centre, , London School of Hygiene & Tropical Medicine, ; London, UK
                [2 ]GRID grid.414142.6, ISNI 0000 0004 0600 7174, Maternal and Child Health Division, , International Centre for Diarrhoeal Disease Research, ; Bangladesh (icddr,b), Dhaka, Bangladesh
                [3 ]GRID grid.4868.2, ISNI 0000 0001 2171 1133, Institute of Population Health Sciences, , Queen Mary University of London, ; London, UK
                [4 ]Research Division, Golden Community, Lalitpur, Nepal
                [5 ]GRID grid.414543.3, ISNI 0000 0000 9144 642X, Department of Health Systems, Impact Evaluation and Policy, , Ifakara Health Institute, ; Dar Es Salaam, Tanzania
                [6 ]GRID grid.25867.3e, ISNI 0000 0001 1481 7466, Department of Paediatrics and Child Health, , Muhimbili University of Health and Allied Sciences, ; Dar Es Salaam, Tanzania
                Article
                3426
                10.1186/s12884-020-03426-5
                7995708
                6c3be782-1b74-46e5-b38b-fe5e43028267
                © The Author(s) 2020

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

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                Research
                Custom metadata
                © The Author(s) 2021

                Obstetrics & Gynecology
                data management,software,electronic data collection tools,electronic health records,hospital records,maternal,newborn,birth,observation

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