Dataset Information

Willingness to Know the Cause of Death and Hypothetical Acceptability of the Minimally Invasive Autopsy in Six Diverse African and Asian Settings: A Mixed Methods Socio-Behavioural Study.

ABSTRACT:

Background

The minimally invasive autopsy (MIA) is being investigated as an alternative to complete diagnostic autopsies for cause of death (CoD) investigation. Before potential implementation of the MIA in settings where post-mortem procedures are unusual, a thorough assessment of its feasibility and acceptability is essential.

Methods and findings

We conducted a socio-behavioural study at the community level to understand local attitudes and perceptions related to death and the hypothetical feasibility and acceptability of conducting MIAs in six distinct settings in Gabon, Kenya, Mali, Mozambique, and Pakistan. A total of 504 interviews (135 key informants, 175 health providers [including formal health professionals and traditional or informal health providers], and 194 relatives of deceased people) were conducted. The constructs "willingness to know the CoD" and "hypothetical acceptability of MIAs" were quantified and analysed using the framework analysis approach to compare the occurrence of themes related to acceptability across participants. Overall, 75% (379/504) of the participants would be willing to know the CoD of a relative. The overall hypothetical acceptability of MIA on a relative was 73% (366/504). The idea of the MIA was acceptable because of its perceived simplicity and rapidity and particularly for not "mutilating" the body. Further, MIAs were believed to help prevent infectious diseases, address hereditary diseases, clarify the CoD, and avoid witchcraft accusations and conflicts within families. The main concerns regarding the procedure included the potential breach of confidentiality on the CoD, the misperception of organ removal, and the incompatibility with some religious beliefs. Formal health professionals were concerned about possible contradictions between the MIA findings and the clinical pre-mortem diagnoses. Acceptability of the MIA was equally high among Christian and Islamic communities. However, in the two predominantly Muslim countries, MIA acceptability was higher in Mali than in Pakistan. While the results of the study are encouraging for the potential use of the MIA for CoD investigation in low-income settings, they remain hypothetical, with a need for confirmation with real-life MIA implementation and in populations beyond Health and Demographic Surveillance System areas.

Conclusions

This study showed a high level of interest in knowing the CoD of a relative and a high hypothetical acceptability of MIAs as a tool for CoD investigation across six distinct settings. These findings anticipate potential barriers and facilitators, both at the health facility and community level, essential for local tailoring of recommendations for future MIA implementation.

SUBMITTER: Maixenchs M

PROVIDER: S-EPMC5119724 | biostudies-literature | 2016 Nov

REPOSITORIES: biostudies-literature

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Publications

Willingness to Know the Cause of Death and Hypothetical Acceptability of the Minimally Invasive Autopsy in Six Diverse African and Asian Settings: A Mixed Methods Socio-Behavioural Study.

Maixenchs Maria M Anselmo Rui R Zielinski-Gutiérrez Emily E Odhiambo Frank O FO Akello Clarah C Ondire Maureen M Zaidi S Shujaat H SS Soofi Sajid Bashir SB Bhutta Zulfiqar A ZA Diarra Kounandji K Djitèye Mahamane M Dembélé Roukiatou R Sow Samba S Minsoko Pamela Cathérine Angoissa PC Agnandji Selidji Todagbe ST Lell Bertrand B Ismail Mamudo R MR Carrilho Carla C Ordi Jaume J Menéndez Clara C Bassat Quique Q Munguambe Khátia K

PLoS medicine 20161122 11

<h4>Background</h4>The minimally invasive autopsy (MIA) is being investigated as an alternative to complete diagnostic autopsies for cause of death (CoD) investigation. Before potential implementation of the MIA in settings where post-mortem procedures are unusual, a thorough assessment of its feasibility and acceptability is essential.<h4>Methods and findings</h4>We conducted a socio-behavioural study at the community level to understand local attitudes and perceptions related to death and the ...[more]

PMID: 27875532

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Project description: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.

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Project description:Worldwide, nearly six million children under the age of five (<5s) die annually, a substantial proportion of which are due to preventable and treatable diseases. Efforts to reduce child mortality indicators in the most affected regions are often undermined by a lack of accurate cause of death data. To generate timely and more accurate causes of death data for <5s, the Child Health and Mortality Prevention Surveillance (CHAMPS) Network established mortality surveillance in multiple countries using Minimally Invasive Tissue Sampling (MITS) in <5 deaths. Here we present acceptability of MITS by community members and healthcare workers in Siaya and Kisumu counties, western Kenya. From April 2017 to February 2018, we conducted 40 in-depth interviews and five focus group discussions with healthcare workers and community members, before and during CHAMPS implementation. Participants were purposively selected. Field observations to understand traditional death-related practices were also performed. Interviews were transcribed into Nvivo 11.0 for data organization and management. Analysis was guided by the grounded theory approach. Facilitators of acceptability were desire to understand why death occurred, timely performance of MITS procedures, potential for MITS results in improving clinical practice and specific assistance provided to families by the CHAMPS program. However, cultural and religious beliefs highlighted important challenges to acceptability, including CHAMPS teams recruiting after a child's death, rumours and myths, unmet expectations from families, and fear by healthcare workers that some families could use MITS results to sue for negligence. Increasing MITS uptake requires sustained strategies to strengthen the identified facilitators of acceptability and simultaneously address the barriers. MITS acceptance will contribute to better characterization of causes of death and support the development of improved interventions aimed at reducing <5 mortality.

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Dataset Information

Willingness to Know the Cause of Death and Hypothetical Acceptability of the Minimally Invasive Autopsy in Six Diverse African and Asian Settings: A Mixed Methods Socio-Behavioural Study.

Background

Methods and findings

Conclusions

Publications

Willingness to Know the Cause of Death and Hypothetical Acceptability of the Minimally Invasive Autopsy in Six Diverse African and Asian Settings: A Mixed Methods Socio-Behavioural Study.

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