Using participatory workshops to assess alignment or tension in the community for minimally invasive tissue sampling prior to start of child mortality surveillance: lessons From 5 sites across the CHAMPS network

The Child Health and Mortality Prevention Surveillance (CHAMPS) program is a 7-country network (as of December 2018) established by the Bill & Melinda Gates Foundation to identify the causes of death in children in communities with high rates of under-5 mortality. The program carries out both mortality and pregnancy surveillance, and mortality surveillance employs minimally invasive tissue sampling (MITS) to gather small samples of body fluids and tissue from the bodies of children who have died. While this method will lead to greater knowledge of the specific causes of childhood mortality, the procedure is in tension with cultural and religious norms in many of the countries where CHAMPS works - Bangladesh, Ethiopia, Kenya, Mali, Mozambique, Sierra Leone, and South Africa. Participatory Inquiry Into Community Knowledge of Child Health and Mortality Prevention (PICK-CHAMP) is a community entry activity designed to introduce CHAMPS to communities and gather initial perspectives on alignments and tensions between CHAMPS activities and community perceptions and priorities. Participants' responses revealed medium levels of overall alignment in all sites (with the exception of South Africa, where alignment was high) and medium levels of tension (with the exception of Ethiopia, where tension was high). Alignment was high and tension was low for pregnancy surveillance across all sites, whereas Ethiopia reflected low alignment and high tension for MITS. Participants across all sites indicated that support for MITS was possible only if the procedure did not interfere with burial practices and rituals

Investigating the feasibility of child mortality surveillance with postmortem tissue sampling: generating constructs and variables to strengthen validity and reliability in qualitative research

The 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.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. 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.Findings 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. These 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

A network of empirical ethics teams embedded in research programmes across multiple sites: opportunities and challenges in contributing to COVID-19 research and responses

Covid-19 continues to teach the global community important lessons about preparedness for research and effective action to respond to emerging health threats.  We share the COVID-19 experiences of a pre-existing cross-site ethics network-the Global Health Bioethics Network-which brings together researchers and practitioners from Africa, Europe, and South east Asia. We describe the network and its members and activities, and the work-related opportunities and challenges we faced over a one-year period during the pandemic. We highlight the value of having strong and long-term empirical ethics networks embedded across diverse research institutions to be able to: 1) identify and share relevant ethics challenges and research questions and ways of ’doing research’; 2) work with key stakeholders to identify appropriate ways to contribute to the emerging health issue response – e.g. through ethics oversight, community engagement, and advisory roles at different levels; and 3) learn from each other and from diverse contexts to advocate for positive change at multiple levels. It is our view that being both embedded and long term offers particular opportunities in terms of deep institutional and contextual knowledge and relationships with and access to a wide range of stakeholders in place. Being networked offers opportunities to draw upon a wide range of expertise and perspectives operating at multiple levels, and to bring together internal and external perspectives (i.e. different positionalities). Long term funding means that the people and resources are in place and ready to respond in a timely way. However, many tensions and challenges remain, including difficulties in negotiating power and politics regarding roles that researchers and research institutions play in an emergency, and the position of empirical ethics activities in programmes of research more specifically. We discuss some of these tensions and challenges, and consider the implications for our own and similar networks in future

A network of empirical ethics teams embedded in research programmes across multiple sites: opportunities and challenges in contributing to COVID-19 research and responses

Covid-19 continues to teach the global community important lessons about preparedness for research and effective action to respond to emerging health threats. We share the COVID-19 experiences of a pre-existing cross-site ethics network-the Global Health Bioethics Network-which brings together researchers and practitioners from Africa, Europe, and Southeast Asia. We describe the network and its members and activities, and the work-related opportunities and challenges we faced over a one-year period during the pandemic. We highlight the value of having strong and long-term empirical ethics networks embedded across diverse research institutions to be able to: 1) identify and share relevant ethics challenges and research questions and ways of ’doing research’; 2) work with key stakeholders to identify appropriate ways to contribute to the emerging health issue response – e.g., through ethics oversight, community engagement, and advisory roles at different levels; and 3) learn from each other and from diverse contexts to advocate for positive change at multiple levels. It is our view that being embedded and long term offers opportunities in terms of deep institutional and contextual knowledge, existing relationships and access to a wide range of stakeholders. Being networked offers opportunities to draw upon a wide range of expertise and perspectives, and to bring together internal and external insights (i.e.drawing on different positionalities). Long term funding means that the people and resources are in place and ready to respond in a timely way. However, many tensions and challenges remain, including difficulties in negotiating power and politics in the roles that researchers and research institutions can and should play in an emergency, and the position of empirical ethics within research programmes. We discuss some of these tensions and challenges and consider the implications for our own and similar networks in future

Using Participatory Workshops to Assess Alignment or Tension in the Community for Minimally Invasive Tissue Sampling Prior to Start of Child Mortality Surveillance: Lessons From 5 Sites Across the CHAMPS Network

The Child Health and Mortality Prevention Surveillance (CHAMPS) program is a 7-country network (as of December 2018) established by the Bill & Melinda Gates Foundation to identify the causes of death in children in communities with high rates of under-5 mortality. The program carries out both mortality and pregnancy surveillance, and mortality surveillance employs minimally invasive tissue sampling (MITS) to gather small samples of body fluids and tissue from the bodies of children who have died. While this method will lead to greater knowledge of the specific causes of childhood mortality, the procedure is in tension with cultural and religious norms in many of the countries where CHAMPS works-Bangladesh, Ethiopia, Kenya, Mali, Mozambique, Sierra Leone, and South Africa. Participatory Inquiry Into Community Knowledge of Child Health and Mortality Prevention (PICK-CHAMP) is a community entry activity designed to introduce CHAMPS to communities and gather initial perspectives on alignments and tensions between CHAMPS activities and community perceptions and priorities. Participants' responses revealed medium levels of overall alignment in all sites (with the exception of South Africa, where alignment was high) and medium levels of tension (with the exception of Ethiopia, where tension was high). Alignment was high and tension was low for pregnancy surveillance across all sites, whereas Ethiopia reflected low alignment and high tension for MITS. Participants across all sites indicated that support for MITS was possible only if the procedure did not interfere with burial practices and rituals

Investigating the Feasibility of Child Mortality Surveillance With Postmortem Tissue Sampling: Generating Constructs and Variables to Strengthen Validity and Reliability in Qualitative Research

Background. The 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. Methods. 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. 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. Results. Findings 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. Conclusions. These 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