How Community and Healthcare Provider Perceptions, Practices and Experiences Influence Reporting, Disclosure and Data Collection on Stillbirth: Findings of a Qualitative Study in Afghanistan
Quality concerns exist with stillbirth data from low- and middle-income countries including under-reporting and misclassification which affect the reliability of burden estimates. This is particularly problematic for household survey data. Disclosure and reporting of stillbirths are affected by the socio-cultural context in which they occur and societal perceptions around pregnancy loss. In this qualitative study, we aimed to understand how community and healthcare providers' perceptions and practices around stillbirth influence stillbirth data quality in Afghanistan. We collected data through 55 in-depth interviews with women and men that recently experienced a stillbirth, female elders, community health workers, healthcare providers, and government officials in Kabul province, Afghanistan between October-November 2017. The results showed that at the community-level, there was variation in local terminology and interpretation of stillbirth which did not align with the biomedical categories of stillbirth and miscarriage and could lead to misclassification. Specific birth attendant practices such as avoiding showing mothers their stillborn baby had implications for women’s ability to recall skin appearance and determine stillbirth timing; however, parents who did see their baby, had a detailed recollection of these characteristics. Birth attendants also unintentionally misclassified birth outcomes. We found several practices that could potentially reduce under-reporting and misclassification of stillbirth; these included the cultural significance of ascertaining signs of life after birth (which meant families distinguished between stillbirths and early neonatal deaths); the perceived value and social recognition of a stillborn; and openness of families to disclose and discuss stillbirths. At the facility-level, we identified that healthcare providers' practices driven by institutional culture and demands, family pressure, and socio-cultural influences, could contribute to under-reporting or misclassification of stillbirths. Data collection methodologies need to take into consideration the socio-cultural context and investigate thoroughly how perceptions and practices might facilitate or impede stillbirth reporting in order to make progress on data quality improvements for stillbirth.