Perception and experiences of adolescent mothers and communities in caring for their preterm babies: findings from an in-depth study in rural Bangladesh.

BACKGROUND: A significant concern for Bangladesh is the high prevalence of adolescent pregnancy and the associated negative consequences for mother and baby, including a teen-related increased risk of preterm birth (PTB). Bangladesh also has one of the highest incidences of PTB (19%). Despite these high numbers of adolescent pregnancies and PTB, little is reported about the experiences of adolescent mothers in caring for their preterm babies, and the interventions needed to support them. The aim of this study was to explore gaps and opportunities for improved care for preterm babies among adolescent mothers and communities in rural Bangladesh. METHODS: We conducted a qualitative study in rural villages of Baliakandi sub-district of Bangladesh. Data collection involved in-depth interviews with adolescent mothers of premature and term babies, adult mothers with premature babies, and family members (n = 36); focus groups with community members (n = 5); and key informant interviews with healthcare providers (n = 13). Adolescent mothers with term and adult mothers with PTBs were included to elicit similarities and differences in understanding and care practices of PTB. A thematic approach was used for data analysis. RESULTS: We explored two major themes- perceptions and understanding of PTB; care practices and care-seeking for illnesses. We observed gaps and variations in understanding of preterm birth (length of gestation, appearance, causes, problems faced) and care practices (thermal management, feeding, weight monitoring) among all, but particularly among adolescents. Immediate natal and marital-kins were prominent in the narratives of adolescents as sources of informational and instrumental support. The use of multiple providers and delays in care-seeking from trained providers for sick preterm babies was noted, often modulated by the perception of severity of illness, cost, convenience, and quality of services. Health systems challenges included lack of equipment and trained staff in facilities to provide special care to preterm babies. CONCLUSION: A combination of factors including local knowledge, socio-cultural practices and health systems challenges influenced knowledge of, and care for, preterm babies among adolescent and adult mothers. Strategies to improve birth outcomes will require increased awareness among adolescents, women, and families about PTB and improvement in quality of PTB services at health facilities.

Stillbirths including intrapartum timing: EN-BIRTH multi-country validation study.

BACKGROUND: An estimated >2 million babies stillborn around the world each year lack visibility. Low- and middle-income countries carry 84% of the burden yet have the least data. Most births are now in facilities, hence routine register-recording presents an opportunity to improve counting of stillbirths, but research is limited, particularly regarding accuracy. This paper evaluates register-recorded measurement of hospital stillbirths, classification accuracy, and barriers and enablers to routine recording. METHODS: The EN-BIRTH mixed-methods, observational study took place in five hospitals in Bangladesh, Nepal and Tanzania (2017-2018). Clinical observers collected time-stamped data on perinatal care and birth outcomes as gold standard. To assess accuracy of routine register-recorded stillbirth rates, we compared birth outcomes recorded in labour ward registers to observation data. We calculated absolute rate differences and individual-level validation metrics (sensitivity, specificity, percent agreement). We assessed misclassification of stillbirths with neonatal deaths. To examine stillbirth appearance (fresh/macerated) as a proxy for timing of death, we compared appearance to observed timing of intrauterine death based on heart rate at admission. RESULTS: 23,072 births were observed including 550 stillbirths. Register-recorded completeness of birth outcomes was > 90%. The observed study stillbirth rate ranged from 3.8 (95%CI = 2.0,7.0) to 50.3 (95%CI = 43.6,58.0)/1000 total births and was under-estimated in routine registers by 1.1 to 7.3 /1000 total births (register: observed ratio 0.9-0.7). Specificity of register-recorded birth outcomes was > 99% and sensitivity varied between hospitals, ranging from 77.7-86.1%. Percent agreement between observer-assessed birth outcome and register-recorded birth outcome was very high across all hospitals and all modes of birth (> 98%). Fresh or macerated stillbirth appearance was a poor proxy for timing of stillbirth. While there were similar numbers of stillbirths misclassified as neonatal deaths (17/430) and neonatal deaths misclassified as stillbirths (21/36), neonatal deaths were proportionately more likely to be misclassified as stillbirths (58.3% vs 4.0%). Enablers to more accurate register-recording of birth outcome included supervision and data use. CONCLUSIONS: Our results show these routine registers accurately recorded stillbirths. Fresh/macerated appearance was a poor proxy for intrapartum stillbirths, hence more focus on measuring fetal heart rate is crucial to classification and importantly reduction in these preventable deaths.

Barriers and enablers to routine register data collection for newborns and mothers: EN-BIRTH multi-country validation study.

BACKGROUND: Policymakers need regular high-quality coverage data on care around the time of birth to accelerate progress for ending preventable maternal and newborn deaths and stillbirths. With increasing facility births, routine Health Management Information System (HMIS) data have potential to track coverage. Identifying barriers and enablers faced by frontline health workers recording HMIS source data in registers is important to improve data for use. METHODS: The EN-BIRTH study was a mixed-methods observational study in five hospitals in Bangladesh, Nepal and Tanzania to assess measurement validity for selected Every Newborn coverage indicators. We described data elements required in labour ward registers to track these indicators. To evaluate barriers and enablers for correct recording of data in registers, we designed three interview tools: a) semi-structured in-depth interview (IDI) guide b) semi-structured focus group discussion (FGD) guide, and c) checklist assessing care-to-documentation. We interviewed two groups of respondents (January 2018-March 2019): hospital nurse-midwives and doctors who fill ward registers after birth (n = 40 IDI and n = 5 FGD); and data collectors (n = 65). Qualitative data were analysed thematically by categorising pre-identified codes. Common emerging themes of barriers or enablers across all five hospitals were identified relating to three conceptual framework categories. RESULTS: Similar themes emerged as both barriers and enablers. First, register design was recognised as crucial, yet perceived as complex, and not always standardised for necessary data elements. Second, register filling was performed by over-stretched nurse-midwives with variable training, limited supervision, and availability of logistical resources. Documentation complexity across parallel documents was time-consuming and delayed because of low staff numbers. Complete data were valued more than correct data. Third, use of register data included clinical handover and monthly reporting, but little feedback was given from data users. CONCLUSION: Health workers invest major time recording register data for maternal and newborn core health indicators. Improving data quality requires standardised register designs streamlined to capture only necessary data elements. Consistent implementation processes are also needed. Two-way feedback between HMIS levels is critical to improve performance and accurately track progress towards agreed health goals.