Brain impairment and high risk newborn babies: Burden, system capacity and neurodevelopmental outcomes in Busoga Region in Uganda

Abstract

Background: Globally, child health has improved with a significant reduction in mortality over the past decades. The global survive and thrive agenda calls for investment in quality health services that optimize development of all newborn babies. Nonetheless, the survivors of perinatal complications are at high risk of developing neurodevelopmental disability (NDD) particularly in settings with poor quality of care, with resultant strain on individuals, families and societies. However, there is limited information on the extent of the burden of NDD among newborn survivors in low income settings. Aim: To establish the burden of NDD and associated factors during infancy, and the health systems readiness to care for high risk newborn babies in order to foster early childhood development in Busoga region, Uganda Methods: Study I was a cross sectional survey among 453 infants aged 9-12 months in Makerere University Centre for Health and Population research using the Malawi Development Assessment Tool (MDAT) to determine the prevalence of NDD and associated factors. Study II was a qualitative study that utilized in-depth interviews with 14 caretakers of the nine babies identified as having severe NDD in study I, and 5 health workers. Latent content analysis and deductive methods were used to understand the caretakers’ perceptions of the causes of NDD, and their experiences of caring for children with NDD. Study III was a prospective cohort study of 242 preterm and 212 term babies born in Iganga hospital. The MDAT was used to assess babies at an average age of 7 months to determine neurodevelopmental outcomes, and any modifiable factors associated with NDD among babies born preterm. Study IV was a descriptive study using a service availability and readiness assessment tool at 6 hospitals and 10 lower level facilities to assess the health facility readiness to care for high risk newborn babies. In addition, 201 mothers of high-risk newborn babies were interviewed regarding their experience of care services received at the facilities.

Results: Study I revealed a high prevalence, 12.7%, of NDD among infants at community level. While study III results showed an incidence of 20.4% of NDD among infants born preterm. The independent factors associated with NDD were difficulties in breathing at birth (or birth asphyxia), AOR=3.66, 95% CI: 1.46-9.17), post-neonatal complications, AOR=4.15, 95% CI: 1.22-14.11, mothers having more than 3 children, AOR=1.81, 95% CI: 1.03-3.19), and malnutrition among preterm babies, AOR=2.92, 95% CI: 1.27-6.71. Kangaroo mother care was found to be protective of preterm babies from developing NDD, AOR=0.46, 95% CI 0.21-1.00. Study II findings showed that caretakers had poor understanding of the causes of NDD. They described the experience of caring for children with NDD as “imprisoning and impoverishing”, with a lot of emotional strain. However, the health system was found inadequate in preventing and addressing the high NDD burden (Study IV & II).

Conclusion: There is a high burden of NDD in Busoga region, Uganda, a setting with a high perinatal mortality rate. The major contributing factors include birth asphyxia, post-neonatal complications, mothers’ parity of more than 3 children, and malnutrition. Multiple interventions are needed to address this high burden of NDD, including: 1) improvement in the health facility readiness and quality of emergency obstetric and neonatal care services; 2) improved nutrition of high risk newborn infants especially preterm babies, 3) creation of community awareness on the causes of NDD, and 4) support for parents having children with NDD in order to address the psycho-social stress.