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. We present a co-development process with community members for the design and implementation of an autopsy program to improve cause of death data in a historically underserved population.

Methods: We sought to develop an autopsy program at the Africa Health Research Institute (AHRI) Health and Demographic Surveillance Site (HDSS). The project proposes to obtain consent from families of deceased adults, to perform diagnostic autopsies by a trained pathologist, and to process samples to determine causes of death. Prior to launching the program, we engaged key partners in learning their perspectives about such a program and understanding the landscape of challenges needed for successful implementation. Herein, we describe lessons from interactions with these partners, including 1) the AHRI community advisory board (CAB), 2) the South Africa Department of Health (SA DoH), 3) local traditional authorities, 4) funeral home personnel, 5) traditional healers, and 6) healthcare providers. We also detail the development of community outreach efforts used to inform the public about the program.

Results: The partners provided valuable feedback on the study design and informed us of issues that needed to be addressed: community concerns about organ retention and sale (CAB), implications of how autopsy findings could spur litigation and erode trust in healthcare providers who determined alternate causes of death (SA DoH), a cultural practice that conflicts with the autopsy procedure (traditional healers), the need to educate families before they engage with funeral businesses (funeral homes), and enhancing our death referral network through healthcare providers. 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: We present a comprehensive model of partner engagement for a community-based autopsy program in South Africa, leading to the co-development of a program that incorporates local customs around death while promoting buy-in and support from the government, civil society, and medical partners.