Background

Rwanda has been a leader in the global effort to reduce infant mortality, particularly in regions of sub-Saharan Africa. Although rates have dropped, deaths still occur.

Objective

To explore the care pathways and barriers taken by infant caregivers before the death of their infant through a verbal social autopsy study in 2 districts in eastern Rwanda.

Methods

We adapted the World Health Organization verbal socialautopsy tools to reflect local context and priorities. Caregivers of infants in the 2 districts were interviewed using the adapted quantitative survey and semistructured interview guide. Interviews were recorded and thematic analysis employed on a subsample (n = 133) to extract the content relevant to understanding the drivers of infant death and inform results of the quantitative data until saturation was reached (66). Results were interpreted through a driver diagram framework to explore caregiver-reported challenges in knowledge and experiences with care access and delivery.

Findings

Most study participants (82%) reported accessing the formal health system at some point before the infant's death. The primary caregiver-reported drivers for infant death included challenges in accessing care in a timely manner, concerns about the technical quality of care received, and poor responsiveness of the system and providers. The 2 most commonly discussed drivers were gaps in communication between providers and patients and challenges obtaining and using the community-based health insurance. The framework of the driver diagram was modified to identify the factors where change was needed to further reduce mortality.

Conclusion

This study provides important information on the experiential quality of care received by infants and their caregivers within the current health care space in rural Rwanda. By listening to the individual stories of so many caregivers regarding the gaps and challenges they faced, appropriate action may be taken to bolster the existing health care system.