The acceptability of minimally invasive tissue sampling for cause of death determination in rural South Africa: A qualitative analysis

BACKGROUND: Minimally invasive tissue sampling (MITS) has been used to determine cause of death in various low- and middle-income countries. However, information on the acceptability of this procedure in community-based deaths is limited; most studies have focused on facility-based deaths among children. This qualitative study describes factors affecting the prospective acceptability of MITS for community deaths across all ages in a rural South African community and reviews the utility of the Theoretical Framework for Acceptability (TFA). METHODS: This qualitative study was conducted in the rural Agincourt Health and socio-Demographic Surveillance System (HDSS) site in Mpumalanga, South Africa. Thematic analysis was conducted on 20 in-depth interviews with residents who had experienced a death within the previous 2 years and 6 focus group discussions (FGDs) with key stakeholders. FGD groups included community members, healthcare workers, traditional healers, religious leaders and mortuary workers. RESULTS: MITS was considered acceptable by interviewees, who posited that bereaved families had a strong desire to know cause of death, which would drive participation. Limited manipulation of the body and minimal disruption of burial practices were conditions that would make MITS more readily acceptable. Facilitators of participation included engaging with local traditional leaders, rigorous community education, transparency and openness regarding MITS activities, and the provision of emotional and psychological support to the bereaved. Whilst local beliefs did not forbid participation in MITS, acceptability was limited for deaths in traditional healers and infants as it would disrupt burial in these groups. Rumours of organ-trafficking during autopsies made some participants wary of the MITS and a lack of trust in the research team could discourage participation. CONCLUSION: In Agincourt, MITS is an acceptable procedure among community members that are interested in knowing cause of death. Thorough community engagement, open communication and an empathetic approach to bereaved families are crucial for building community support for the implementation of MITS. The TFA provides a valuable outline for the assessment of acceptability but failed to account for trust dynamics between providers and participants. We propose the modification of the TFA to include the domain "trust in providers".