Engaging communities in collecting and using results from verbal autopsies for child deaths: an example from urban slums in Freetown, Sierra Leone

BACKGROUND: Verbal autopsies (VAs) can provide important epidemiological information about the causes of child deaths. Though studies have been conducted to assess the validity of various types of VAs, the programmatic experience of engaging local communities in collecting and using VA has received little attention in the published literature. Concern Worldwide, an international non-governmental organization (NGO), in collaboration with the Ministry of Health and Sanitation (MOHS), has implemented a VA protocol in five urban slums of Freetown, Sierra Leone. This paper provides VA results and describes lessons learned from the VA process. METHODS: Under-five child deaths were registered by Community Health Workers (CHWs) in five urban slums between 2014 and 2017, and a specially trained local clinician used a VA protocol to interview caretakers. Symptoms were analysed using InterVA-4 computerized algorithm, a probabilistic expert-driven model to determine the most likely cause of death. Themes in care-seeking were extracted from multiple-choice and open-ended questions. VAs were implemented in collaboration with the community and the results were shared with community stakeholders in participatory review meetings. RESULTS: Main challenges included limitations in death notification and capacity to conduct VA for all notified deaths. A total of 215 VA were available for analysis. Among 79 neonatal deaths aged 0-27 days, the most common cause of death was neonatal pneumonia (55%); among 136 children deaths aged 1-4 years, the most common causes were malaria (56%) and pneumonia (41%). Key themes in care-seeking identified included use of traditional medicine (14% of deaths), absence of care-seeking (23% of deaths), and difficultly reaching the health facility (8% of deaths that occurred at home) during fatal illness. CONCLUSIONS: Conducting VAs as a collaborative process with communities is challenging but can provide valuable data that can be used for local-level decision-making. The findings have practical implications for engaging the community and CHWs in reducing the number of these preventable deaths through expanded efforts at prevention, early and appropriate treatment, and reduction of barriers to care-seeking. A functional end-to-end VA system can enhance meaningful routine vital events monitoring by community, national, and international stakeholders.