Local perceptions of causes of death in rural South Africa : a comparison of perceived and verbal autopsy causes of death

Background: Understanding how lay people perceive the causes of mortality and their associated risk factors is important for public health. In resource-limited settings, where verbal autopsy (VA) is used as the most expedient method of determining cause of death, it is important to understand how pre-existing concepts of cause of death among VA-informants may influence their VA-responses and the consequential impact on cause of death assessment. This study describes the agreement between VA-derived causes of death and informant-perceived causes and associated influential factors, which also reflects lay health literacy in this setting. Method: Using 20 years of VA data (n = 11,228) from the Agincourt Health and Demographic Surveillance System (HDSS) site in rural South Africa, we explored the agreement between the causes of death perceived by the VA-informants and those assigned by the automated Inter-VA tool. Kappa statistics and concordance correlation coefficients were applied to measure agreement at individual and population levels, respectively. Multivariable regression models were used to explore factors associated with recognised lay perceptions of causes of mortality. Results: Agreement between informant-perceived and VA-derived causes of death at the individual level was limited, but varied substantially by cause of death. However, agreement at the population level, comparing cause-specific mortality fractions was higher, with the notable exception of bewitchment as a cause. More recent deaths, those in adults aged 15-49 years, deaths outside the home, and those associated with external causes showed higher concordance with InterVA. Conclusion: Overall, informant perception of causes of death was limited, but depended on informant characteristics and causes of death, and to some extent involved non-biomedical constructs. Understanding discordance between perceived and recognised causes of death is important for public health planning; low community understanding of causes of death may be detrimental to public health. These findings also illustrate the importance of using rigorous and standardised VA methods rather than relying on informants' reported causes of death