Socio-anthropological methods to study the feasibility and acceptability of the minimally invasive autopsy from the perspective of local communities: lessons learnt from a large multi-centre study

Abstract

The minimally invasive autopsy (MIA), an innovative approach for obtaining post-mortem samples of key organs, is increasingly being recognized as a robust methodology for cause of death (CoD) investigation, albeit so far limited to pilot studies and research projects. A better understanding of the real causes of death in middle- and low-income countries, where underlying causes of death are seldom determined, would allow improved health planning, more targeted prioritization of available resources and the implementation of coherent public health policies. This paper discusses lessons learnt from the implementation of a Feasibility and Acceptability (F&A) study evaluating the MIA approach in five countries: Gabon, Kenya, Mali, Mozambique and Pakistan. This article reports the methodological choices made to document sociocultural and religious norms around death, to examine community and relatives’ attitudes and perceptions towards MIA, and to identify factors motivating the MIA’s acceptance and refusal. We used ethnography, grounded theory and framework method approaches. In-depth and semi-structured interviews and focus group discussions with key informants, including next of kin of deceased individuals and healthcare providers, were conducted. Participant observation and direct observation of procedures and ceremonies around death were organized in all study sites. In Mozambique, MIA procedures were observed and case studies conducted. The implementation of this F&A protocol has provided critical lessons that could facilitate the future implementation of post-mortem procedures for CoD investigation. These include the need for early community engagement, staff training and preparedness, flexibility to adapt the protocol, gathering qualitative data from diverse sources, and triangulation of the data. We have applied a rigorous, effective and culturally sensitive methodological approach to assess the F&A of MIA in resource-constrained settings. We strongly recommend that such an approach is applied in settings where MIAs or similar post-mortem sensitive procedures are to be introduced.

Perceptions of family, community and religious leaders and acceptability for minimal invasive tissue sampling to identify the cause of death in under-five deaths and stillbirths in North India: a qualitative study

“…The key factors like no mutilation, disfigurement, organ retrieval, and disrespect to the body were considered positive for MITS compared to the CDA. These observations were similar to the reports from Muslim and Christian dominated communities [ 29 , 31 , 33 , 34 , 38 ]. Timing of death appeared to influence MITS acceptance as the burial should be completed before end of the day [ 33 , 37 ].…”

Consent to minimally invasive tissue sampling procedures in children in Mozambique: A mixed-methods study

“…Anticipated acceptability variables derived from a secondary analysis of data from the ethnographic component of the CaDMIA study on local attitudes and perceptions related to death and willingness to know the cause of death described in detail elsewhere [ 15 , 40 ]. From September 2013 to April 2015, deaths in the previous 1–30 days within or outside the health facilities (HF) were notified by HF staff, DHSS field workers, or community informants to social behavioural sciences (SBS) research team members, who then invited the closest relative present at the time of death to a one-on-one semi-structured interview.…”

A comparison of MITS counseling and informed consent processes in Pakistan, India, Bangladesh, Kenya, and Ethiopia

“…The hypothetical acceptability of MITS has also recently been assessed across diverse geographic settings, including north India [ 3 ], Kenya [ 6 ], Mali [ 6 ], Mozambique [ 6 ], Pakistan [ 5 ], and the United Kingdom [ 7 ]. These studies have demonstrated a high theoretical acceptability of MITS across a range of participants, including parents, relatives of the deceased, healthcare providers, and religious and community leaders [ 3 , 5 – 7 ].…”