Sarah Lawrence1, Dave Namusanya2, Andrew Hamuza2, Cornelius Huwa3,4, Dennis Chasweka3,4, Maureen Kelley4,5, Sassy Molyneux4,5, Wieger Voskuijl3,4,6,7, Donna M Denno1,4,8, Nicola Desmond2,9. 1. Department of Pediatrics, University of Washington, Seattle, Washington, United States of America. 2. Behaviour and Health Research Group, Malawi-Liverpool-Wellcome Trust, Blantyre, Malawi. 3. Department of Paediatrics and Child Health, College of Medicine, Blantyre, Malawi. 4. The Childhood Acute Illness & Nutrition (CHAIN) Network, C/o KEMRI Wellcome Trust Research Programme, Nairobi, Kenya. 5. Wellcome Centre for Ethics & Humanities and Ethox Centre, Nuffield Department of Population Health, University of Oxford, Oxford, United Kingdom. 6. Department of Global Health, Amsterdam Institute for Global Health and Development, Amsterdam University Medical Centres, Amsterdam, The Netherlands. 7. Amsterdam Centre for Global Child Health, Amsterdam University Medical Centres, Amsterdam, The Netherlands. 8. Department of Global Health, University of Washington, Seattle, Washington, United States of America. 9. Department of International Public Health, Liverpool School of Tropical Medicine, Liverpool, United Kingdom.
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.
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.
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