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

Abstract

Background Minimally invasive tissue sampling (MITS), also named minimally invasive autopsy is a post-mortem method shown to be an acceptable proxy of the complete diagnostic autopsy. MITS improves the knowledge of causes of death (CoD) in resource-limited settings. Its implementation requires understanding the components of acceptability, including facilitators and barriers in real-case scenarios. Methods We undertook a mixed-methods analysis comparing anticipated (hypothetical scenario) and experienced (real-case scenario) acceptability of MITS among relatives of deceased children in Mozambique. Anticipated acceptability information was obtained from 15 interviews with relatives of deceased children. The interview focus was on whether and why they would allow the procedure on their dead child in a hypothetical scenario. Experienced acceptability data were obtained from outcomes of consent requested to relatives of 114 deceased children during MITS implementation, recorded through observations, clinical records abstraction and follow-up informal conversations with health care professionals and semi-structured interviews with relatives. Results Ninety-three percent of relatives indicated that they would hypothetically accept MITS on their deceased child. A key reason was knowing the CoD to take preventive actions; whereas the need to conform with the norm of immediate child burial, the secrecy of perinatal deaths, the decision-making complexity, the misalignment between MITS’ purpose and traditional values, lack of a credible reason to investigate CoD, and the impotency to resuscitate the deceased were identified as potential points of hesitancy for acceptance. The only refusing respondent linked MITS to a perception that sharing results would constitute a breach of confidentiality and the lack of value attached to CoD determination. Experienced acceptability revealed four different components: actual acceptance, health professionals’ hesitancy, relatives’ hesitancy and actual refusal, which resulted in 82% of approached relatives to agree with MITS and 79% of cases to undergo MITS. Barriers to acceptability included, among others, health professionals’ and facilities’ unpreparedness to perform MITS, the threat of not burying the child immediately, financial burden of delays, decision-making complexities and misalignment of MITS’ objectives with family values. Conclusions MITS showed high anticipated and experienced acceptability driven by the opportunity to prevent further deaths. Anticipated acceptability identified secrecy, confidentiality and complex decision-making processes as barriers, while experienced acceptability revealed family- and health facility-level logistics and practical aspects as barriers. Health-system and logistical impediments must also be considered before MITS implementation. Additionally, the multiple components of acceptability must be taken into account to make it more consistent and transferrable.

A Qualitative Assessment of Community Acceptability and Its Determinants in the Implementation of Minimally Invasive Tissue Sampling in Children in Quelimane City, Mozambique

“…In comparison, studies conducted with parents and family members of children who died and a MITS procedure was offered showed that the experienced acceptability was driven by the opportunity to prevent further deaths of children in the family. 9,10,12 Of note, this potential facilitator of anticipated acceptability of MITS in Quelimane is to some extent influenced by certain cultural norms, as the findings of our study revealed that some community members already practice a desire to know the COD following local practices, such as consultation with oracles through healers. This suggests that the introduction of MITS in this context could be in alignment with some of the existing practices surrounding the death of a child.…”

“…4,7 This technique is being used in several contexts in LMICs and appears to be promising in terms of its greater acceptability because it is considered a fast, simple, and more user-friendly technique that can be performed by minimally trained staff, although there are factors considered to be important barriers that may put its acceptability at risk. [9][10][11] Existing evidence on the anticipated and experienced acceptability of the MITS procedure thus demonstrates the importance of recognizing the cultural mores and practices of the context where MITS is implemented. 9,12 Death and related post-mortem procedures are embedded in complex social, cultural, and religious environments.…”

“…9,12 Death and related post-mortem procedures are embedded in complex social, cultural, and religious environments. 9,10 In the case of Zamb ezia province (central Mozambique), the existence of myths, rumors, and negative perceptions of certain public health initiatives, as was the case with cholera control, 13 could challenge the success of the implementation of MITS in this setting. Acknowledging this risk, it is critical to understand local attitudes and perceptions in relation to death as well as the potential barriers and facilitators to the uptake of interventions involving post-mortem procedures, which could determine the acceptability of the implementation of MITS in Quelimane.…”

Perceptions and compliance with COVID-19 preventive measures in Southern and Central regions of Mozambique: a quantitative in-person household survey in the districts of Manhiça and Quelimane

“…Similarly, the district of Quelimane was chosen because CISM has been conducting biomedical research there for 5 years, particularly on causes of deaths using minimally invasive tissue sampling (7). Currently, CISM is establishing an HDSS in the district.…”

Causes of Death Among Infants and Children in the Child Health and Mortality Prevention Surveillance (CHAMPS) Network

“…9 The Child Health and Mortality Prevention Surveillance (CHAMPS) Network was established in 2016 as a long-term collaborative platform to conduct standardized, comprehensive, and highquality surveillance for causes of child mortality (including stillbirths) in high-mortality, sentinel sites in sub-Saharan Africa and Asia. 10 Core surveillance activities include the use of the innovative postmortem minimally invasive tissue sampling (MITS) approach for COD investigation, 11 which is more reliable than verbal autopsy and clinical records investigation 7,12 and more socially and culturally acceptable than complete diagnostic autopsies. 13 The accumulation of cases from CHAMPS sentinel sites is providing a more robust backbone to support future child mortality statistics.…”