Structural Coercion in the Context of Community Engagement in Global Health Research Conducted in a Low Resource Setting in Africa

"...community engagement alone did not address underlying structural inequalities to ensure adequate protection of communities."

Participatory approaches have increasingly been viewed as crucial for effective and ethical conduct of development programmes, including health research, in the global south. While core ethical principles for human subject protection have traditionally focused on the rights of individual research participants, some have recommended a broader community-based focus on research participation. This paper details a qualitative study that explored whether and in what ways community engagement (CE), in practice, improves the ethical conduct of research in the context of structural inequalities in the low-resource setting of Malawi.

First, the paper examines the notion of structural coercion, which grew out of Paul Farmer (2006)'s work on structural violence. Based on this concept, Fisher (2013) introduced the term "structural coercion" to describe how "the broader social, economic and political context compels individuals to enrol in research". The idea, then, is that it is important to pay attention to the socio-economic context and power dynamics between researchers and participants. To that end, looking at the context in which the present study was carried out, the researchers note that Malawi's democracy has been critiqued as having hierarchical structures of social relations and strong authoritarian strains. The literacy rate is 65%; however, the level of scientific literacy is much lower.

The study focused on the engagement activities of three biomedical research projects from different institutions in urban, rural, and hospital settings as ethnographic case studies. Data were collected through participant observation, 43 in-depth interviews (IDIs), and 17 focus group discussions (FGDs) with community leaders, research staff, community members, and research participants.

Summary of CE activities within the case studies:

1. Urban: A meeting with senior education officials, followed by a series of meetings with parents, teacher committees, and students in all participating school communities. Aims of the CE: to raise awareness about the study, to get feedback on the research, and to engage in two-way dialogue with communities.
2. Rural: Involvement of community members in selecting village committees and research volunteers, training of committee members and community volunteers on various aspects of community-based interventions, weekly village workshops facilitated by community volunteers on health promotion, and community involvement in implementing community- and household-level interventions. Aims of the CE: to educate and empower communities to implement interventions aimed at preventing malaria.
3. Hospital: FGDs with potential study participants before implementing the study, distribution of study information sheets, and a meeting with health care workers (HCWs) at the study site to communicate study details prior to implementation. Aims of the CE: To explore patients' and community members' understanding of study information and to seek their feedback.

Most of the meetings in the three case studies were facilitated by research nurses and field workers, except for the rural case study, where some community members were engaged as peer educators. In some cases, drama and songs were used to communicate study information, and an opportunity was often given to attendees to ask questions or seek clarification about the study. Common to all the CE activities was the involvement of district-level government and non-governmental stakeholders such as teachers and HCWs, as well as community leaders, during community meetings and/or study implementation.

The results showed that structural coercion arose due to an interplay of factors pertaining to social-economic context, study design, and power relations among research stakeholders. Themes include:

• Perception of research as part of community development: All community-based research projects had links with local government, which the study found created the appearance that what was being implemented was a government programme, rather than biomedical research. Since most interventions run by the government, including vaccinations, are mandatory, some individuals participated in research with the assumption that research was also mandatory. Furthermore, the context of poverty and the need for development assistance led some to think their participation in research would lead directly to community benefits. Similarly, many research participants, including village leaders, had difficulties in differentiating between biomedical research and health services offered by non-governmental organisations (NGOs).
• Research participants' motivation to access individual benefits: The research showed that some respondents were motivated to participate in research to access clinical assessment, treatment, and other forms of compensation. In addition, a majority of community members had limited understanding of research (due to low scientific literayc), yet CE activities did not help to address therapeutic misconceptions of research: "in the socio-economic conditions under which research was conducted, the major effect of community engagement was to enhance recruitment."
• The power of vernacular translations of medical research terminologies in influencing research participation: For example, vernacular translation of some research terminologies during CE meetings played a role in revering biomedicine as more advanced to address health problems and influenced research participation.
• The coercive power of community leaders in community-based research: Engagement of community leaders by researchers is considered to be culturally appropriate in most African settings and a common engagement practice, since it demonstrates respect towards community structures. However, far from effectively protecting communities from being compelled to participate in research, the study found that some of the village leaders threatened people - often without the knowledge of the researchers - that they would be thrown out of the village or that they would be restricted from accessing social services to ensure compliance with research activities.

Thus, the involvement of community leaders and government stakeholders, as well as power inequalities among research stakeholders, affected some participants' ability to make autonomous decisions about research participation. The researchers conclude that CE alone did not address underlying structural inequalities or ensure that informed consent was voluntarily given; rather, they found ample evidence of structural coercion in the context of CE in this low-resource setting.

A suggested way forward: "Long term participatory engagement of communities throughout research design and implementation may help to understand and address these contextual factors in order to avert structural coercion." The researchers cite Boga (2011), for instance, who reported that CE to develop context-relevant consent forms for different study designs in Kenya helped improve community understanding of study information before people were asked to give consent. Finally, the literature on community advisory boards (CABs) indicates that, "where CABs have been properly set up, they understand their advisory roles and they have the ability to analyze and communicate ethical issues....Structural coercion could similarly be minimized by developing CABs who are empowered to analyze ethical issues pertaining to study implementation and advise researchers accordingly."