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.

KEYWORDS:

• Minimally invasive autopsy
• feasibility
• acceptability
• methodology
• ethnography
• grounded theory
• framework analysis
• qualitative

Responsible Editor Peter Byass, Umeå University, Sweden

Responsible Editor Peter Byass, Umeå University, Sweden

Acknowledgments

We would like to thank all participants, especially the families of deceased persons, for their time and for making this study possible. We thank all personnel involved in the study for their commitment and dedication. We specifically thank Mr. Bento Nhancale for his invaluable support to the study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Ethics and consent

The study was approved centrally by the Clinical Research Ethics Committee of the Hospital Clínic de Barcelona (File 2013/8676), Spain, and locally by the following institutional review boards and ethics committees at each site: the ethics committee of the Faculté de Médecine, Pharmacologie et Odonto-Stomatologie of the Université de Bamako (Mali); the Comité d’Éthique Régional Indépendant de Lambaréné (Gabon); Kenya Medical Research Institute local and national scientific steering committees and national ethical review committees (Kenya); the Manhiça Health Research Centre (Centro de Investigação em Saúde da Manhiça) institutional bioethics committee (CIBS-CISM) and the National Committee for Bioethics in Health (Comité Nacional de Bioética para Saúde) (Mozambique); and the Aga Khan University Ethics Review Committee (Pakistan). Written or verbal informed consent was provided by all participants as part of this protocol prior to initiation of any study related activities.

Paper context

The Minimally Invasive Autopsy is a robust method for cause of death determination in settings where the complete diagnostic autopsy is not feasible and/or acceptable. However, before the deployment of such a surveillance tool, it appears crucial to understand the local context in order to plan a coherent and respectful utilization. We present the methodology used to assess the feasibility and acceptability of this innovative tool at the community level.

Supplementary material

Supplemental data for this article can be accessed here.

Additional information

Funding

The CaDMIA research project (Validation of the Minimally Invasive Autopsy Tool for Cause of Death Investigation in Developing Countries) was funded by the Bill & Melinda Gates Foundation (Global Health grant number OPP1067522) (http://www.gatesfoundation.org/) and by the Spanish Instituto de Salud Carlos III (FIS, PI12/00757; CM) (https://portalfis.isciii.es). Quique Bassat has a fellowship from the Institució Catalana de Recerca i Estudis Avançats (ICREA) agency (https://www.icrea.cat/). ISGlobal is included in the CERCA Programme/Generalitat de Catalunya (http://cerca.cat/en/suma/). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Notes on contributors

Khatia Munguambe

MM, ZAB, STA, CC, JO, CM, QB and KM designed the multi-centre study. All authors agreed upon the final version of the multi-centre study protocol. MM, GMP, QB and KM wrote the original draft of the manuscript. All authors contributed to the critical review of the manuscript, and all authors read and approved the final manuscript.