Using Participatory Workshops to Assess Alignment or Tension in the Community for Minimally Invasive Tissue Sampling Prior to Start of Child Mortality Surveillance: Lessons From 5 Sites Across the CHAMPS Network

Abstract

The Child Health and Mortality Prevention Surveillance (CHAMPS) program is a 7-country network (as of December 2018) established by the Bill & Melinda Gates Foundation to identify the causes of death in children in communities with high rates of under-5 mortality. The program carries out both mortality and pregnancy surveillance, and mortality surveillance employs minimally invasive tissue sampling (MITS) to gather small samples of body fluids and tissue from the bodies of children who have died. While this method will lead to greater knowledge of the specific causes of childhood mortality, the procedure is in tension with cultural and religious norms in many of the countries where CHAMPS works—Bangladesh, Ethiopia, Kenya, Mali, Mozambique, Sierra Leone, and South Africa. Participatory Inquiry Into Community Knowledge of Child Health and Mortality Prevention (PICK-CHAMP) is a community entry activity designed to introduce CHAMPS to communities and gather initial perspectives on alignments and tensions between CHAMPS activities and community perceptions and priorities. Participants’ responses revealed medium levels of overall alignment in all sites (with the exception of South Africa, where alignment was high) and medium levels of tension (with the exception of Ethiopia, where tension was high). Alignment was high and tension was low for pregnancy surveillance across all sites, whereas Ethiopia reflected low alignment and high tension for MITS. Participants across all sites indicated that support for MITS was possible only if the procedure did not interfere with burial practices and rituals.

Mortality Surveillance Methods to Identify and Characterize Deaths in Child Health and Mortality Prevention Surveillance Network Sites

“…For 12–18 months before initiating CHAMPS activities, each site established a social-behavioral sciences (SBS) team to examine local social, cultural, and religious norms and to engage local communities to explain the project aims and methods and seek their support. Site SBS teams conduct focus groups, assist with rumor identification and mitigation, support families, and engage the community through a variety of activities [35, 36].…”

The evolution of minimally invasive tissue sampling in postmortem examination: a narrative review

“…The number of qualitative studies aimed at understanding the facilitators and barriers to implementing MITS in a variety of cultures, religions, and populations, including health care providers, parents, families, and community leaders is relatively balanced in HICs versus LMICs. Of the seven qualitative studies with publication dates between 2011 and 2019, four were conducted in LMICs and three in HICs [ 3 , 49 , 50 , 52 , 58 , 59 , 63 – 65 ].…”

“…The year 2019 saw a sharp rise in the quantity of MITS publications, including a study of children dying of respiratory illness in Kenya and a study of stillbirths and neonates in Ethiopia [34,35]. A large proportion of the 2019 increase in MITS publications is attributable to the October 2019 release of 13 articles describing MITS from the experience of the Child Health and Mortality Prevention Surveillance (CHAMPS) Network [2,15,33,36,37,[54][55][56][57][58][59][60][61][62]. With promising results from the relatively few validation studies completed, the CHAMPS Network rapidly endorsed the use of MITS and is poised to both build on earlier validation studies and also improve on a number of aspects of MITS such as reducing the time and expense associated with performing MITS.…”

Challenges and needs for social behavioural research and community engagement activities during the COVID-19 pandemic in rural Mozambique

“…acceptability, practicality and implementation) of the intervention (Maixenchs et al, 2016;Sage et al, 2019). It often comprises a community engagement component which is critical for community acceptance and collaboration (Blevins et al, 2019;Brenner & Manice, 2012).…”