Community Engagement and Building Trust to Resolve Ethical Challenges during Humanitarian Crises: Experience from the CAGED Study in Ethiopia

Background According to data from the Internal Displacement Monitoring Centre’s Global Report on Internal Displacement 2019 , Ethiopia had the highest number of people newly displaced within their own country due to violence. Several regions in the country experience on-going ethnic tensions and violent tribal conflict, which leaves smallholder farmers suspicious and distrustful of any outside activities in their locale, fearing harm from other ethnic groups. Changes in the central Ethiopian government have also led to suspicion of non-local agencies. The Campylobacter Genomics and Enteric Dysfunction (CAGED) research project’s objective is to improve the incomes, livelihoods and nutrition of smallholder farmers and was conducted during this period of increased tension and violence. The project aims to assess the impact of reducing exposure to chicken excreta on young children’s gut health and growth. To inform the study design, formative baseline field data was collected between March 2018 and February 2019 by a team of trained and experienced human and animal health professionals from the same region, who speak the local language.


Discussion
This research is important to determine whether Campylobacter infection in chickens contributes to illness and stunting in children. Stunting is widespread in humanitarian settings, with major implications for children's well-being and social inequalities. During this research, violence against other researchers elsewhere in Ethiopia led to mistrust and lack of engagement by the community.
Hostile reactions developed until the team was fearful about returning to certain households. The team designed mitigation strategies in response, including establishing two types of community advisory boards. One used pre-existing village elder structures and another included village youth.
Data collection team members received training in principles of ethics, consent, and crisis management, and were provided on-going support from local and international principal investigators and the study's ethics advisor.

Conclusion
Tension and conflict led to mistrust of outsiders which generated fear among the CAGED data collectors The resulting challenges were addressed by innovative strategies which also delayed the 3 research process. The interventions resulted in successful completion of the field activities. The lessons learned are being implemented with other projects being conducted in various parts of Ethiopia.

Background 1. Humanitarian context
The Campylobacter Genomics and Enteric Dysfunction (CAGED) formative research project was conducted in Haramaya Woreda (or district) in Eastern Ethiopia while conflict occurred in various parts of Ethiopia. According to data from the Internal Displacement Monitoring Centre (IDMC) for 2018, the latest report available, Ethiopia had the highest number of people newly displaced within their own country due to violence. [1] Conflict has uprooted some 2.89 million Ethiopians from the total population of 107 million. In 2018, the central government changed after being ruled by another party for decades. While the new government is working to bring about peace and security, internal conflict continues partly due to intertribal strife, which makes both routine and humanitarian research very difficult. Although Haramaya was not directly affected by human displacements, the participants' attitudes and trust levels were impacted by displaced people arriving in nearby regions.

Research Study
The demand for animal source foods (ASF) in Africa is growing rapidly. According to the United Nations, the demand for meat, milk and eggs in Africa will quadruple by 2050, mostly due to population growth and rising living standards. [2] This creates opportunities for improved nutrition and income generation, particularly among Africa's poorest who produce much of the continent's ASF.
At the same time, animals also contribute to human illness. One long-term goal of CAGED is to improve the understanding of the causes and mitigation of environmental enteric dysfunction (EED). Research activities in the CAGED project are set in the context of the Ethiopian government's Livestock Master Plan (LMP), which aims to increase poultry production significantly by transitioning from traditional (scavenging) family poultry to improved (semi-scavenging) family poultry systems. [3] However, animal excreta, and particularly chicken manure, is considered one of the key factors driving exposure to and (asymptomatic) infection by enteric pathogenic bacteria, and causing EED.
Studies estimate that EED may cause up to 40% of stunting in the developing world. [4] The Etiology,

Risk Factors, and Interactions of Enteric Infections and Malnutrition and the Consequences for Child
Health (MAL-ED) study identified a high Campylobacter prevalence in primarily asymptomatic children in eight low-resource settings, not including Ethiopia. [5] Cumulative Campylobacter burden was associated with lower length-for-age Z-scores (LAZ), increased intestinal permeability, and intestinal and systemic inflammation at 24 months of age. The CAGED hypothesis is that Campylobacter bacteria are a primary factor in inducing EED through exposure to livestock (predominantly chickens), which are a major reservoir of Campylobacter. It is further hypothesized that adequate management of livestock feces will improve childhood nutrition in Ethiopia, particularly within the context of increasing poultry production.
The CAGED project has several phases, some of which are completed and others on-going. Results In the ethnographic phase of CAGED (March to May 2018) teams from Haramaya University and the University of Florida developed working relationships at the community, regional, and national levels.
The team recruited data collectors who were born and raised in the region, knew the local language and culture, and had prior experience working in these localities. The baseline data were collected via several methods: participant observation; in-depth, un-structured and semi-structured interviews; and focus group discussions. These methods were used to fully understand a number of pre-identified themes required for appropriate design of the cross-sectional study. This phase gave a detailed understanding of current chicken husbandry practices in the region, and how these may change with LMP implementation.
The formative research (October to December 2018) included a randomized cross-sectional survey to collect information on the prevalence of Campylobacter in children approximately 14 months old and livestock in their homesteads, measuring gut health and collecting anthropometric data by measuring linear growth (weight and length) and middle-upper arm circumference. Extensive data were collected through structured household interviews with children's parents about food consumption, feeding practices, child health, water and sanitation, assets, livestock ownership, and management and women's empowerment.
The study also involved laboratory analysis of fecal and urine samples that was conducted partly at Haramaya University and partly by US partners as some of the techniques were not available in Ethiopia. All laboratory samples were labelled with codes to anonymize the sources of the samples.
This also meant that individual results were not provided to participants, which was explained to families before they agreed to participate. The study team is, however, committed to communicate the aggregated results of the study to the local communities.

Ethical Aspects
The CAGED study was conducted in accordance with the Declaration of Helsinki ethics standards for clinical trials.
[6] Prior to data collection, Institutional Review Board (IRB) approval was obtained from all university partners and the Ethiopian National Ethics Review Committee. Potential participants who were sick were excluded from the study, pertinent findings communicated to the family, and referred 6 to nearby health care facility.

Scientific Importance Of The Research
The overall objective of the CAGED project is to improve the incomes, livelihoods and nutrition of smallholder farmers by increasing the productivity of their livestock through quality feeds and to determine the cause of environmental enteric dysfunction (EED), which contributes to stunting in poor children, and to develop mitigation strategies. CAGED aims to determine the extent to which Camplyobacter contributes to EED and stunting, given that unclean water, poor sanitation and contaminated food are also contributing factors. Ethiopia's livestock policies call for movement to family poultry systems, making it important to understand the health implications of these changes in a humanitarian setting. Traditional livestock practices where chickens roam around homes and villages allow children to easily contact chicken excreta. Moving chicken into cages may reduce contact between children and contaminated excreta, and thereby impact the incidence of EED and stunting. This research is importance because stunting is the most prevalent form of childhood malnutrition globally, associated with increased morbidity and mortality, irreversible developmental delays, and psychosocial problems. Such is often the case with humanitarian research. Central to trust is confidence that those being trusted are committed to the best interests of the others, and that they will be faithful to their commitments. The CAGED researchers were received well in some villages, but not in others. In some villages, the reaction was so negative that some parents who had agreed to enroll in the study decided to discontinue their participation. In these cases, it seemed that the researchers were assumed to be from the government, which was not trusted at the time because of the on-going political change.
These issues led to the development of a number of strategies aimed at building trust. In some villages, the research team was able to meet with the village leadership and spent time together in prayer and other informal activities. The elders learned that the researchers were from the same religion and spoke the same local language. The elders saw that the CAGED research team was from 8 Haramaya University, which is known in the area for its social responsibility-related activities. Also, the local principal investigator (PI) for CAGED is the acting President of the University and is highly respected in Haramaya. The researchers were also able to explain to the elders that the team was from the University, not the government. Showing them that the approval and support letters were from the University, not a political office, helped significantly. However, in other villages, suspicions were very high, mainly among the youth. The data collectors applied what they had learned in the previous villages, sharing information about themselves and the origins of the research, and prayed with the community. Once trust developed, the research was able to proceed.
As the researchers spent more time in the community getting to know one another and developing trust, community members asked the researchers to take on additional roles in providing services.
This led to ethical dilemmas for the researchers. For example, sometimes severely malnourished children were identified during data collection. The research team decided to provide medical assistance where appropriate, and transportation to and from nearby health facilities where necessary. While this contributed to better relationships with the community, it also blurred the boundaries between the data collectors' roles as researchers versus service providers. This can lead to misconceptions over participation, especially if the communities believe they must participate in order to receive the other benefits. In such cases with CAGED, it was decided that the children's health outweighed these concerns. However, such decisions remain challenging ethical dilemmas.

b. Two types of community advisory boards (CABs)
A more formal strategy developed to assist on-going trust issues. Community advisory boards (CABs) help promote engagement and trust-building between researchers and participant communities, especially in low and middle-income countries. Different approaches are used to form CABs with different member compositions, but two models are generally used to create CABs with either broad representation from across the community or specifically targeted populations. [11] CAGED developed a blended approach in establishing two CABs. One was developed from pre-existing indigenous leadership structures composed mostly of village elders (the Elder CAB). The second was made up of younger members of the community, all above 18 years of age, and called the Youth CAB.

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The data collectors identified greater mistrust between youth and the research team. The young adults, through their representative, were invited to form a Youth CAB to meet with the research team. The Youth CAB selected a representative to accompany the researchers as they visited each kebele to inform householders about CAGED. This gave researchers time to get to know the representative as they ate, travelled and prayed together. The youth representatives were compensated for their time with the research team.
Using the Youth CAB representative raised ethical challenges. One involved protecting the privacy and confidentiality of the households who were invited to participate in CAGED. This was done by limiting the representative's role to introducing the researchers to the households and addressing their initial questions. The representative left the house before a decision was made to participate or not. This meant that the representative was not aware of which households participated in the research and which did not. Another challenge arose over expectations regarding the amount of compensation for the representative. Once it was explained by the research team that this payment had not been in the original budget for the study, and that the study had a limited budget which should be focused on bringing good to the community, mutual agreement was reached on the level of compensation. As trust developed, the data collectors were able to conduct their work more easily.

c. Challenges with language
While the above strategies addressed challenges at the community level, other challenges arose at the household level. Seven households refused to participate after initially consenting (which was expected to some degree, but not to the extent experienced), and some families threatened the data collectors. Some argued about the wording of the consent form and asked for additional explanations.
It came to light that although the consent forms were provided in local languages, one word had a very different meaning in the dialect of a specific locality. This served to heighten mistrust because the different use of the term was associated with another group involved in the intertribal conflict.
The commitment to resolving this situation exemplified how translation can contribute to justice during crises and conflict. [12] In addition, some families requested more time to think about the study, which was uncommon for this kind of study, but completely acceptable to the CAGED team.
Other families argued about why stool samples needed to be shipped abroad, which was unusual as samples usually are analyzed more locally. Once the reasons were provided, the language differences resolved, and it was made clearer that participants had the right to withdraw from the study at any time, recruitment improved.

d. Risks to Researchers and Data Collectors
Risk assessments are standard aspects of research ethics analyses, but these have primarily focused on the risks to participants. [13] Some qualitative research has identified a number of risks to which researchers are exposed, especially when addressing sensitive topics. [14] However, as humanitarian work is increasingly informed by research and evidence, more will be conducted in conflict settings.
The ethical imperative to do no harm should include harm to researchers. [15] As one experienced conflict researcher observed, "my presence in a war zone was a political act even if I had not intended it that way." [16] Therefore, the risks to those conducting research during conflict and violence need to be examine carefully and mitigation strategies developed to lower those risks. Such analysis also needs to include the impact of unrest and violence on researchers, and their amplification through social media. Some CAGED researchers reported that the tension and distrust was very difficult emotionally for them, and they were deeply impacted by these experiences.
A key strategy in working through these dilemmas was training and preparation. The lead field coordinator of the study had prior training in conflict resolution and community engagement, as well as hands-on experience in similar circumstances. He helped train all data collectors on how to manage similar situations, which helped reassure the data collectors about their safety and fostered better engagement with the community. As data collectors moved from one kebele to another, they used each experience as an opportunity to learn and adapt for subsequent sites. The project manager introduced end-of-day review sessions for each team to discuss challenges and lessons learned each day. Moreover, data collectors received training in principles of ethics, consent and conflict resolution.
A structured study monitoring tool was used regularly by two GOHi team members to monitor and audit data collection work.
As challenges arose, a system of real-time problem identification was set up where data collectors called their supervisor in Ethiopia, who then contacted the overall CAGED PI at the University of Florida for discussion and advice as needed. This reassured the data collectors that they had easy access to real-time support with the ethical, interpersonal or methodological aspects of the study.

Conclusions And Lessons Learned
The negotiations and resulting adjustments, along with the various challenges, took considerable time and resources to mitigate. Given that the study was set up for a limited time period with a fixed budget, members of the research team had to work very hard to adjust to the unexpected developments.
Reflecting on the overall field activity, data collectors considered this experience challenging and difficult. Strategies are required to predict when such problems are likely to occur, and mitigation strategies should be planned from the beginning of a project. When specific challenges arise, these can be adapted to the specific circumstances and settings. Strategies and protocols to develop trust and resolve conflict should be planned, but need to be evaluated to provide evidence regarding which of these are effective.
The ethics training developed for data collectors and the resulting strategies developed in the field helped to build trusting relationships with these communities. These experiences are already being used to inform other studies that Haramaya University is currently conducting. The process of sharing these practices was facilitated by the local PI of the project, as he is also the acting president for research in the University, thus also in charge of advising other research projects on procedural issues and best practices. As political stability in Ethiopia improves, the receptiveness of the community to research is expected to increase. • Consent for publication 12 Not applicable • Availability of data and materials

Declarations • Ethics approval and consent to participate
The funder of the project and PLOS have open access policies, so our data will become publicly available if the manuscripts we are currently preparing have been accepted. We have not yet deposited our data.

• Competing interests
The authors declare that they have no competing interests. • Authors' contributions DO and GY designed the case study with contributions from WG. DO and GY drafted the case study which was reviewed by WG, AH, JY, SM and AM. Comments from reviewers were responded to by DO and GY. All authors reviewed the final manuscript.