Abstract
BackgroundThe Child Health and Mortality Prevention Surveillance (CHAMPS) network aims to generate reliable data on the causes of death among children aged <5 years using all available information, including minimally invasive tissue sampling (MITS). The sensitive nature of MITS inevitably evokes religious, cultural, and ethical questions influencing the feasibility and sustainability of CHAMPS.MethodsDue to limited behavioral studies related to child MITS, we developed an innovative qualitative methodology to determine the barriers, facilitators, and other factors that affect the implementation and sustainability of CHAMPS surveillance across 7 diverse locations in sub-Saharan Africa and South Asia. We employed a multimethod grounded theory approach and analytical structure based on culturally specific conceptual frameworks. The methodology guided data interpretation and collective analyses confirming how to define dimensions of CHAMPS feasibility within the cultural context of each site while reducing subjectivity and bias in the process of interpretation and reporting.ResultsFindings showed that the approach to gain consent to conduct the MITS procedure involves religious factors associated with timing of burial, use of certain terminology, and methods of transporting the body. Community misperceptions and uncertainties resulted in rumor surveillance and consistency in information sharing. Religious pronouncements, recognition of health priorities, attention to pregnancy, and advancement of child health facilitated community acceptability. ConclusionsThese findings helped formulate program priorities, guided site-specific adaptations in surveillance procedures, and verified inferences drawn from CHAMPS epidemiological and formative research data. Results informed appropriate community sensitization and engagement activities for introducing and sustaining mortality surveillance, including MITS.
Highlights
The Child Health and Mortality Prevention Surveillance (CHAMPS) network aims to generate reliable data on the causes of death among children aged
Findings showed that the approach to MITS consent should involve close attention and adherence to specific religious and cultural factors associated with timing of death to burial and the type of burial is associated with differences in age at death
Findings highlighted community misperceptions and uncertainties about CHAMPS, emphasizing the need for rumor surveillance programs and consistent communications and information sharing across the CHAMPS network
Summary
Due to limited behavioral studies related to child MITS, we developed an innovative qualitative methodology to determine the barriers, facilitators, and other factors that affect the implementation and sustainability of CHAMPS surveillance across 7 diverse locations in sub-Saharan Africa and South Asia. Ethnography is an approach seeking to understand how a group of people (ie, community) forms and sustains a “culture” around a specific topic, which may result in a clearer understanding of certain cultural behaviors and practices [10, 11] This approach allows opportunities to explore cultural and social phenomena (ie, child death) in their broader contexts to. As previous studies have focused more on hypothetical responses about the acceptability of conducting MITS, we determined that firsthand experiences from parents who have lost a child, for example, could provide more accurate evidence regarding MITS acceptability [15,16,17] This approach enables SBS investigators to move from theoretical impressions about potential factors influencing CHAMPS feasibility into understanding how these factors operate in actuality [9]
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