Hypothetical acceptability of hospital-based post-mortem pediatric minimally invasive tissue sampling in Malawi: The role of complex social relationships.

Andrew Hamuza,Sarah Lawrence,Nicola Desmond,Maureen Kelley,Dave Namusanya,Donna M Denno,Sassy Molyneux,Dennis Chasweka,Ritesh G Menezes,Wieger Voskuijl,Cornelius Huwa

doi:10.1371/journal.pone.0246369

Abstract

Child mortality rates remain unacceptably high in low-resource settings. Cause of death (CoD) is often unknown. Minimally invasive tissue sampling (MITS)-using biopsy needles to obtain post-mortem samples-for histopathological and microbiologic investigation is increasingly being promoted to improve child and adult CoD attribution. "MITS in Malawi" is a sub-study of the Childhood Acute Illness & Nutrition (CHAIN) Network, which aims to identify biological and socioeconomic mortality risk factors among young children hospitalized for acute illness or undernutrition. MITS in Malawi employs standard MITS and a novel post-mortem endoscopic intestinal sampling approach to better understand CoD among children with acute illness and/or malnutrition who die during hospitalization. To understand factors that may impact MITS acceptability and inform introduction of the procedure to ascertain CoD among children with acute illness or malnutrition who die during hospitalization in Malawi. We conducted eight focus group discussions with key hospital staff and community members (religious leaders and parents of children under 5) to explore attitudes towards MITS and inform consent processes prior to commencing the MITS in Malawi study. We used thematic content analysis drawing on a conceptual framework developed from emergent themes and MITS acceptability literature. Feelings of power over decision-making within the hospital and household, trust in health systems, and open and respectful health worker communication with parents were important dimensions of MITS acceptability. Other facilitating factors included the potential for MITS to add CoD information to aid sense-making of death and contribute to medical knowledge and new interventions. Potential barriers to acceptability included fears of organ and blood harvesting, disfigurement to the body, and disruption to transportation and burial plans. Social relationships and power dynamics within healthcare systems and households are a critical component of MITS acceptability, especially given the sensitivity of death and autopsy.

Highlights

Child deaths in low- and middle-income countries have declined considerably over the past two decades
Other facilitating factors included the potential for Minimally invasive tissue sampling (MITS) to add Cause of death (CoD) information to aid sense-making of death and contribute to medical knowledge and new interventions
Social relationships and power dynamics within healthcare systems and households are a critical component of MITS acceptability, especially given the sensitivity of death and autopsy

Summary

Introduction

Child deaths in low- and middle-income countries have declined considerably over the past two decades. The Childhood Acute Illness & Nutrition (CHAIN) Network aims to identify biological and socioeconomic mortality risk factors among young children (2–23 months) hospitalized for acute illness or undernutrition across nine sites in six countries [3]. While prior experiences with the health care system and HCWs will likely play a role in MITS acceptability, data from this study suggest the immediacy of family experiences with hospital and research staff during the index inpatient stay will likely be even more important drivers. “MITS in Malawi” is a sub-study of the Childhood Acute Illness & Nutrition (CHAIN) Network, which aims to identify biological and socioeconomic mortality risk factors among young children hospitalized for acute illness or undernutrition. MITS in Malawi employs standard MITS and a novel postmortem endoscopic intestinal sampling approach to better understand CoD among children with acute illness and/or malnutrition who die during hospitalization

Methods

Results

Conclusion