Counting the invisible: health systems factors influencing stillbirth measurement and reporting

Background: Stillbirths represent a global public health crisis, affecting nearly two million babies annually. Progress in reducing stillbirth rates worldwide has been slow, primarily due to limited data availability and poor data quality, which hinder advocacy and planning. This constraint has stalled the prioritization of stillbirths in global and national public health agendas. The foundational components of health systems, including governance and leadership, health workforce, financing, data/health information systems, essential commodities, and service delivery, form the basis for producing, analyzing, interpreting, and disseminating high-quality, reliable, and timely health data, including data related to stillbirths. Objectives: The thesis aims to investigate health system factors influencing stillbirth recording and reporting. Three key objectives were pursued to achieve this aim. Objective 1 reviews the legislative policy environment in countries to understand stillbirth recording and reporting. Objective 2 seeks to understand stillbirth recording and reporting in the Ashanti Region of Ghana from the perspective of the district health management team. Objective 3 aims to gain insights into practices and challenges related to stillbirth recording and reporting from the perspective of health workers in public health facilities in the Ashanti Region of Ghana. Methods: Two distinct methodological approaches were employed. For objective one, a systematic three-step policy review process analyzed country responses to the 2018-2019 WHO Reproductive, Maternal, Neonatal, Child, and Adolescent Health policy survey across 155 countries. Additionally, over 800 national policies relevant to stillbirths were examined across 66 countries. Descriptive quantitative analysis was applied to examine the findings. For objectives 2 and 3, semi-structured qualitative interviews were conducted at the sub-national level, with 15 district health officers and 28 facility-level health workers involved in maternity services or stillbirth data in the Ashanti Region of Ghana. Thematic analyses were performed using an a priori framework. Results: At the policy level, fewer than one-fifth of countries have an established stillbirth rate target. Only 45.5% of reviewed national policy documents mention registering stillbirths, while 43.9% of countries have national policies requiring stillbirths to be reviewed. Interviews at the country level suggested a disconnect between policy and practice. Five areas were identified to close the policy and practice gap for stillbirth data: 1) Standardizing stillbirth definitions and sensitizing health workers to the definition; 2) Ensuring effective assessment of stillbirth types using international classification; 3) Avoiding blame from the individual level to the wider organizational health system level; 4) Addressing errors contributing to misclassifications, omissions, and underreporting; and 5) Integrating information across data systems. Conclusion: Defining and implementing stillbirth policies, strengthening and empowering health workers, and establishing robust data/ health information systems play critical roles in improving stillbirth data by ensuring the availability, accessibility, timeliness, and quality of data. This is essential for monitoring and tracking stillbirth trends, identifying the magnitude and distribution of stillbirths, and ultimately working toward achieving the global goal of 12 stillbirths or fewer per 1,000 total births in every country.