Minimally invasive tissue sampling among hospital-based child deaths in Blantyre, Malawi: the role of social relationships and power dynamics

Undernutrition is an underlying cause in almost 45% of child deaths globally. Case fatality among children hospitalized with acute malnutrition remains high even with guideline-based care. Cause of death (CoD) is often unknown. Minimally invasive tissue sampling (MITS) using needles to obtain post-mortem samples for histopathological and microbiologic investigation is increasingly being utilized to improve child and adult CoD attribution. “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 enrolled in a parent study who die during hospitalization. This formative study aimed to understand sociocultural factors that may impact MITS acceptability in this setting in Malawi. We conducted eight focus group discussions with various hospital cadres and community members to explore attitudes towards MITS and to inform consent process design. We used thematic content analysis drawing on a conceptual framework developed from prior MITS acceptability work. Social relationships at hospital, as well as at community and individual levels, emerged as important factors likely to inform MITS acceptability. Feelings of power over decision-making, trust in healthcare systems facilitated by active involvement of caretakers in child’s treatment, and content of communication about MITS were also important dimensions informing acceptability. Other facilitating factors included the potential for MITS to add CoD information to aid in sense-making of death, to reduce witchcraft accusations in communities, and to contribute to medical knowledge and new interventions. The findings informed how we developed an appropriate and contextualised consent approach within a hospital-based cohort study. They further highlight that understanding social relationships and power dynamics within healthcare systems, community social and cultural contexts, and how MITS is placed within existing parent studies are critical components to consider in consent processes and acceptability of MITS in facility-based settings.