“Even when people live just across the road…they won’t go”: Community health worker perspectives on incentivized delays to under-five care-seeking in urban slums of Kampala, Uganda

Background: Although under-five (U5) mortality in Uganda has dropped over the past two decades, rates in urban slum neighborhoods remain high. As part of a broader verbal and social autopsy study of U5 deaths, this study explored the perspectives of volunteer community health workers, called Village Health Teams (VHTs), on why children under five in Kampala’s informal settlements are still dying despite living in close proximity to nearby health facilities. Methods: This exploratory, qualitative study took place between January and March 2020 in the Rubaga division of Kampala, Uganda. VHTs from the slums of Kawaala and Nankulabye parishes, both located near a large government health center, were interviewed by a trained local interviewer to determine their perceptions of barriers to care-seeking and attribution for U5 childhood deaths. All interviews were audiotaped, transcribed into English, imported into NVivo V 12.0 and thematically analyzed using the Attride-Stirling framework. Results: 20 VHTs were interviewed, yielding two global themes, the first focusing on VHTs perceptions of their role in the community to promote positive health outcomes, and the second focusing on VHTs’ perceptions of how prompt care-seeking is disincentivized. Within the latter theme, three inter-related sub-themes emerged: disincentives for care-seeking at the health system level, which can drive negative beliefs held by families about the health system, and in turn, drive incentives for alternative health behaviors, which manifest as “incentivized delays” to care-seeking. Discussion: This study illustrates VHT perspectives on the complex interactions between health system disincentives and the attitudes and behaviors of families with a sick child, as well as the reinforcing nature of these factors. Findings suggest a need for multi-pronged approaches that sensitize community members, engage community and health system leadership, and hold providers accountable for providing high-quality care. VHTs have enormous potential to foster improvement if given adequate resources, training, and support.