Experiences of parents and caretakers going through the consent process to perform minimally invasive tissue sampling (MITS) on their deceased children in Quelimane, Mozambique: A qualitative study

Abstract

Background In Mozambique, the Countrywide Mortality Surveillance for Action (COMSA) Program implemented a child mortality surveillance to strengthen vital events registration (pregnancies, births, and deaths) and investigate causes of death using verbal autopsies. In Quelimane district, in addition to the abovementioned cause of death determination approaches, minimally invasive tissue sampling (MITS) was performed on deceased children <5years of age. This study focused on understanding deceased children parents’ and caretakers’ experiences of the consent process to perform MITS in order to contribute to the improvement of approaches to cause of death investigation and inform efforts to maximize acceptability of mortality surveillance activities. Methods A qualitative study was conducted in six urban and semi-urban communities in Quelimane district. A total of 40 semi-structured interviews with family members of deceased children and 50 non-participant observations of the consent process were conducted to explore their experience with informed consent request to perform MITS on their child. Data analysis of the interviews and observations was thematic, being initially deductive (predetermined codes) followed by the generation of new codes according to the data (inductive).The Consolidated criteria for reporting qualitative research (COREQ) guidelines for reporting qualitative studies were performed. Findings Although most participants consented to the performance of MITS on their deceased child, some stated they had not fully understood the MITS procedure despite the informed consent process due to unclear information and their state of mind after their loss. Consenting to MITS and doing so with family members disagreeing were also identified as stress-enhancing factors. Participants also described dissatisfaction of family members, resulting from the condition of the body delivered after tissue collection. In addition, the waiting time to receive the body and resulting delays for the funeral were considered additional factors that may increase stress and compromise the acceptability of MITS. Conclusion Family experiences were influenced by operational and logistical issues linked to the procedure itself and by it being in tension with social and cultural issues, which caused stress and discontentment on parents and caretakers of deceased children. The main factors that contributed to the experience of going through the MITS process were the state of mind after the death, complex decision making processes within the family, washing of the body for purification after MITS and seepage, and limited understanding of consent for MITS. When requesting consent for MITS, emphasis should be placed on transmitting clear and understandable information about MITS procedures to participants.