Service readiness for inpatient care of small and sick newborns: Improving measurement in low- and middle-income settings

Background: In 2018, 2.5 million newborns died; mainly from prematurity, infections, and intrapartum events. Preventing these deaths requires health systems to provide routine and emergency care at birth, and quality inpatient care for small and sick newborns. Despite high potential impact, inpatient newborn care is not consistently measured. Methods: For this PhD, I conducted a bottleneck analysis using data from 12 national workshops regarding delivery of inpatient newborn care in low- and middle-income countries (LMIC). Using WHO guidelines, grey literature and expert consultation, I mapped the components required to deliver inpatient care and reviewed these against three health facility assessment tools. Finally, I carried out an online survey to elicit global practitioner opinions regarding levels of newborn care, paralleling those used for monitoring emergency obstetric care in LMIC. Results: In 12 high-burden countries in sub-Saharan Africa and Asia, health financing and workforce were identified as the greatest bottlenecks to scaling up quality inpatient care, followed by community ownership. My review identified 654 components required to deliver inpatient care. These are inconsistently measured by existing health facility assessments. The 262 survey respondents agreed on 12 interventions to comprise a package of care for small and sick newborns; selected levels of care varied by clinical background and experience in LMIC. Conclusion: Inpatient newborn care faces multiple health system challenges, particularly to ensure funding and skilled staffing. Standard facility numbers and staffing ratios by defined levels of care are important for countries to benchmark service delivery progress. Due to the large number of components required for delivering quality care, newborn “signal functions” could be selected by level of care to parallel emergency obstetric care indicators. Improved measurement of service readiness requires sustained focus on interoperability of routine measurement systems, and further research to better capture the experience of newborn inpatient care for families

Long-term follow-up and treatment in nine boys with X-linked creatine transporter defect

The creatine transporter (CRTR) defect is a recently discovered cause of X-linked intellectual disability for which treatment options have been explored. Creatine monotherapy has not proved effective, and the effect of treatment with L-arginine is still controversial. Nine boys between 8 months and 10 years old with molecularly confirmed CRTR defect were followed with repeated 1H-MRS and neuropsychological assessments during 4–6 years of combination treatment with creatine monohydrate, L-arginine, and glycine. Treatment did not lead to a significant increase in cerebral creatine content as observed with H1-MRS. After an initial improvement in locomotor and personal-social IQ subscales, no lasting clinical improvement was recorded. Additionally, we noticed an age-related decline in IQ subscales in boys affected with the CRTR defect

"Every Newborn-BIRTH" protocol: observational study validating indicators for coverage and quality of maternal and newborn health care in Bangladesh, Nepal and Tanzania.

Background: To achieve Sustainable Development Goals and Universal Health Coverage, programmatic data are essential. The Every Newborn Action Plan, agreed by all United Nations member states and >80 development partners, includes an ambitious Measurement Improvement Roadmap. Quality of care at birth is prioritised by both Every Newborn and Ending Preventable Maternal Mortality strategies, hence metrics need to advance from health service contact alone, to content of care. As facility births increase, monitoring using routine facility data in DHIS2 has potential, yet validation research has mainly focussed on maternal recall surveys. The Every Newborn - Birth Indicators Research Tracking in Hospitals (EN-BIRTH) study aims to validate selected newborn and maternal indicators for routine tracking of coverage and quality of facility-based care for use at district, national and global levels. Methods: EN-BIRTH is an observational study including >20 000 facility births in three countries (Tanzania, Bangladesh and Nepal) to validate selected indicators. Direct clinical observation will be compared with facility register data and a pre-discharge maternal recall survey for indicators including: uterotonic administration, immediate newborn care, neonatal resuscitation and Kangaroo mother care. Indicators including neonatal infection management and antenatal corticosteroid administration, which cannot be easily observed, will be validated using inpatient records. Trained clinical observers in Labour/Delivery ward, Operation theatre, and Kangaroo mother care ward/areas will collect data using a tablet-based customised data capturing application. Sensitivity will be calculated for numerators of all indicators and specificity for those numerators with adequate information. Other objectives include comparison of denominator options (ie, true target population or surrogates) and quality of care analyses, especially regarding intervention timing. Barriers and enablers to routine recording and data usage will be assessed by data flow assessments, quantitative and qualitative analyses. Conclusions: To our knowledge, this is the first large, multi-country study validating facility-based routine data compared to direct observation for maternal and newborn care, designed to provide evidence to inform selection of a core list of indicators recommended for inclusion in national DHIS2. Availability and use of such data are fundamental to drive progress towards ending the annual 5.5 million preventable stillbirths, maternal and newborn deaths.Children’s Investment Fund Foundation (CIFF)Swedish Research CouncilUnited States Agency for International DevelopmentSaving Newborn Lives/Save the ChildrenWHOBill & Melinda Gates Foundatio

Parents as carers on a neonatal unit: Qualitative study of parental and staff perceptions in a low-income setting.

AIM: To determine parents' experiences on a neonatal unit in a low-income country, how they and staff perceive the role of parents and if parents' role as primary carers could be extended. BACKGROUND: A busy, rural district hospital in Rwanda. Rwandan neonatal mortality is falling, but achieving Sustainable Development Goal target is hampered by trained staff shortage. METHODS: Qualitative thematic content analysis of semi-structured interviews with 12 parents and 16 staff. RESULTS: Parental concerns were around their baby's survival, stress and discharge. They were satisfied with their baby's care but feared their baby may die. Mothers described stress from remaining in hospital throughout baby's stay, providing all non-technical care including tube or breast feeds day and night, followed by kangaroo mother care until discharge. They expressed loneliness from lack of visitors, difficulty finding food and somewhere to sleep, financial worries, concern about family at home, and were desperate to be discharged. Staff focused on shortage of nurses limiting technical care, ability to educate parents and provide follow-up. Neither groups thought parents' role could be extended. CONCLUSION: Staff, including senior management, were mainly focused on increasing nursing numbers. Parents' concerns were psychosocial and about coping emotionally with their baby's care and practical concerns about inpatient facilities, particularly lack of food and accommodation and absence from home. Staff preoccupation with nurse numbers made them concentrate on medical care, but parental issues identified are more likely to be provided by experienced mothers, allied health professionals, mothers' groups or community health workers