Rumor surveillance in support of minimally invasive tissue sampling for diagnosing the cause of child death in low-income countries: A qualitative study

Abstract

In low-and middle-income countries, determining the cause of death of any given individual is impaired by poor access to healthcare systems, resource-poor diagnostic facilities, and limited acceptance of complete diagnostic autopsies. Minimally invasive tissue sampling (MITS), an innovative post-mortem procedure based on obtaining tissue specimens using fine needle biopsies suitable for laboratory analysis, is an acceptable proxy of the complete diagnostic autopsy, and thus could reduce the uncertainty of cause of death. This study describes rumor surveillance activities developed and implemented in Bangladesh, Mali, and Mozambique to identify, track and understand rumors about the MITS procedure. Our surveillance activities included observations and interviews with stakeholders to understand how rumors are developed and spread and to anticipate rumors in the program areas. We also engaged young volunteers, local stakeholders, community leaders, and study staff to report rumors being spread in the community after MITS launch. Through community meetings, we also managed and responded to rumors. When a rumor was reported, the field team purposively conducted interviews and group discussions to track, verify and understand the rumor. From July 2016 through April 2018, the surveillance identified several rumors including suspicions of organs being harvested or transplanted; MITS having been performed on a living child, and concerns related to disrespecting the body and mistrust related to the study purpose. These rumors, concerns, and cues of mistrust were passed by word of mouth. We managed the rumors by modifying the consent protocol and giving additional information and support to the bereaved family and to the community members. Rumor surveillance was critical for anticipating and readily identifying rumors and managing them. Setting up rumor surveillance by engaging community residents, stakeholders, and volunteers could be an essential part of any public health program where there is a need to identify and react in real-time to public concern.

The impact of COVID-19 on implementation of mass testing, treatment and tracking of malaria in rural communities in Ghana: A qualitative study

“…In this study, community engagement to build stronger, sustainable relationships with the communities was adopted as a response strategy to demystify the misconceptions and rumours associated with the COVID-19 pandemic. This strategy was adopted because it has been reported as a very effective way to reduce the conceiving and spread of rumours during public health interventions [ 33 ].…”

Exploring Perceptions and Acceptance of Minimally Invasive Tissue Sampling among Bereaved Relatives and Health-Care Professionals in Rwanda

“…These MITS enablers have been previously documented in the literature. 1,11,12,[15][16][17][18][19] Barriers to the consent process included high socioeconomic status, religious beliefs, lack of power to make decisions, and lack of trust in medics (thinking that internal organs are harvested). Previous studies have shown that some religious believers are reluctant to accept autopsy procedures.…”

“…Furthermore, the optimal implementation of MITS would likely be an alternative to conventional autopsy pathology services, which are almost never exploited in most LMICs. 8 , 18 , 21 …”

“…7,12,15,16 Studies have documented the acceptability of MITS among bereaved families and health-care professionals across different countries. 1,11,12,[15][16][17][18][19] The use of MITS in autopsy pathology is quite new in Rwanda, with the first occurrence being a feasibility study conducted from December 2019 to September 2020 on death cases eligible for clinical autopsy. 20 As such, it is necessary to explore perceptions and acceptance of MITS among health-care professionals and bereaved families whose beloved ones have undergone MITS as an alternative to clinical autopsy in Rwanda.…”

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

“…The implementation of any postmortem procedure to determine the COD in a social setting that is not familiar with research studies, with some of the poorest health indicators and a history of myths, rumors, and negative perceptions surrounding specific public health initiatives, is marred with challenges. 18,19 It is thus evident that the success of the intervention would require an in-depth understanding of what is culturally and religiously acceptable and feasible. 11,16 Similar to what has been reported in other settings, prior to the implementation of the MITS procedure, an assessment of the foreseen acceptability of child mortality surveillance was conducted to understand attitudes and perceptions surrounding death as well as possible barriers and facilitators to the implementation of the post-mortem procedure.…”