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

Abstract

Background 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. Aim 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. Methods 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. Results 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. Conclusion 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.

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

“…26 , 27 The fear of harvesting organs of the deceased individuals has also been previously reported as one of the barriers to MITS acceptance. 12 This barrier could be eliminated if detailed information regarding the MITS procedure were made available to the community. The bereaved relatives and health-care professionals complained about delay in obtaining MITS results, which consequently reduces the acceptability of MITS.…”

“…These findings are in keeping with published literature. 1 , 5 , 11 , 12 , 14 , 23 Still, health-care professionals recommended integrating MITS services among hospital services. MPDs were highly appreciated.…”

“… 8 The excellent adequacy and reliability of MITS coupled with its time- and cost-effectiveness and less emotional stress for the bereaved family are among the motivators for the widespread use of MITS. 1 , 11 , 12 Additionally, MITS is considered a safer postmortem diagnostic procedure than conventional autopsy in cases of contagious diseases, such as COVID-19. 13 It is worthy of note that when compared to conventional autopsy, MITS has relatively lower sensitivity in terms of diagnosis and characterization of the extent of lesions.…”

Validating a Minimally Invasive Tissue Sampling (MITS) Method in Determining Cause of Death in Stillbirths and Neonates

“…The diagnostic accuracy of the minimally invasive tissue sampling (MITS) procedure has been tested against CDA in some few previous studies in adults, children, stillbirths and neonates [9][10][11]. The great potential for MITS to add reliable cause of death information was also confirmed in one recently published study in a population in Malawi [12]. To date, no large-scale, multicenter studies have been conducted to validate the diagnostic accuracy of MITS when compared to CDA.…”

Untitled

“…The drivers of both anticipated and experienced acceptability were oriented to the expectation that MITS can explain the unknown, ease some suspicions, and reassure relatives with the hope of avoiding further misfortune [41,42]. Importantly, although lightly captured, power relationships between the health care provider and the relatives-which was expressed by the perception that MITS was mandatory-may play a role in acceptability (particularly in anticipated acceptability) [32,[42][43][44]; this may suggest that in the context of consent on deaths occurring in the community, whereby a power shift from the health-facility staff to the relatives and community authorities may be observed, the acceptability to the procedure might be lower.…”