A roadmap for navigating partner engagement in community-based autopsy studies: lessons from the field in rural KwaZulu-Natal, South Africa

Background The measurement of cause-specific mortality is critical for health system planning but remains a challenge in many low-resource settings due to societal, legal, and logistical barriers. Our aim was to describe the co-development process used with community partners to inform the design and implementation of an autopsy program intended to improve cause of death data in a historically underserved population. Methods We developed a complete diagnostic autopsy program within a Health and Demographic Surveillance System in rural KwaZulu-Natal, South Africa. The project proposes to obtain consent from families of deceased adults, to perform autopsies by a trained pathologist, and to process samples to determine causes of death. Before implementation, we engaged community, governmental, traditional, clinical, and funeral sectors to identify potential barriers and inform study design. Concerns and recommendations documented during these engagements were synthesized in team debriefings and translated into protocol and community-outreach adaptations. Results Our partners identified several issues requiring program adaptation, including concerns about organ retention and sale (community advisory board); implications of how autopsy findings could spur litigation and erode trust in healthcare providers who determined alternate causes of death (Department of Health officials); cultural practices related to burial of an intact body (traditional healers); the importance of educating families before they engage with funeral businesses (funeral homes); the need to establish multiple pathways through which eligible deaths could be identified and families could learn about the program. This led to protocol changes and an adapted community engagement strategy, which included educating healthcare providers, hosting community dialogs, broadcasting radio advertisements, and developing a film to describe autopsy procedures to families considering participation. Conclusions Engagement with diverse partners changed how the autopsy program was designed, communicated, and implemented. Similar programs should clarify legal jurisdiction, address culturally salient concerns about bodily integrity and burial, educate communities before approaching bereaved families, establish multiple referral pathways, and prospectively document and evaluate program adaptations.