In South Africa, most of the HIV/TB research studies are conducted with communities where the burden of disease is fueled by structural drivers such as economic, political, cultural, social, and religious factors. Power inequalities do exist between research teams and community stakeholders, and this includes imbalances in research literacy, education, and economic resources (GPP, 2011). These imbalances may result in communities and community stakeholders viewing research teams as superior, and research teams need to possess the skills to manage these imbalances, which can reinforce a culture of silence.

In our work with communities, we are often faced with the culture of silence. We conduct our research with communities who have endured the brunt of an oppressive apartheid regime. The system was oppressive for blacks, coloreds (the South African term for people of mixed-race heritage), and Indians. Apartheid and colonization are conducive to the development of the culture of silence which is passed on from one generation to the next. To understand the culture of silence, we look at the ideas of Paulo Freire, a Brazilian pedagogue who revolutionized ideas about poor and oppressed people (Freire, 1998). His ideas trust people to critically explore and understand their world and seek their own solutions. When people understand their world, people in the community can develop community-based solutions. Understanding the culture of silence enables the facilitation of change that is consistent, ethical, professional, and accountable (Schenk, Nel & Louw, 2010).

Freire is of the view that when people are oppressed, a “culture of silence” develops. Culture is the way people structure their experiences conceptually and may be transmitted as knowledge from person to person and from one generation to the next (Freire, 1998). People base this knowledge on how they view the world around them and how they adjust to this world. It is important to note that culture develops over a long time, through generations. According to Freire, society is made up of two groups of people and these are the oppressors/invaders and those who are oppressed or invaded. The oppressors may emphasize that the oppressed are of an inferior social/educational and economic class and that their status is unchangeable. Over time, the oppressed believe that they are inferior and accept the oppressors’ views of the world, and how they are viewed by the oppressors. Oppression is often reinforced by the technological, financial, and scientific resources available to the oppressors.

The culture of silence may play out in research settings when people in communities see research teams as superior, and accept what research teams say as the only reality because research teams are viewed as possessing scientific knowledge that cannot be challenged. People may depend on research teams to guide the community’s actions in the research process, especially when The community struggles to question research proposals made by researchers. When people rely too heavily on research teams, this can result in dependency. The culture of silence compromises research autonomy. When a person or a “community stakeholder” is autonomous, it is believed that the person can make their own decisions about what to do and what to agree to do. Community stakeholder autonomy is defined as the right of the community stakeholders to support or refuse proposals to conduct research (GPP, 2011).  When there is no autonomy, people become dependent and community stakeholders are likely to view themselves as having no ownership in the research process.

According to Freire, the culture of silence is broken through a process of “conscientization” which is a process for developing, strengthening, and changing the consciousness of people rather than just educating them. What do we do at the clinical research site to break the culture of silence? We always negotiate our entry into a community. This is negotiated according to the cultural norms and requirements of the community and with respect. When entry is not negotiated, the people of the community feel invaded and view us as invaders or oppressors. We avoid reproducing oppression by being aware of the impact of our actions, and we take deliberate steps to avoid our voices dominating the conversations. We adopt the view that people can think critically about their circumstances and themselves. People don’t have to be “taught” and can learn through self-reflected learning within their frame of references, experiences, realities, values, and culture. We must allow and trust people to take control of their lives, as people are the experts of their own realities. We must allow people to engage in a collective process of conscientization on their circumstances.  When we create safe spaces for dialogues, people have the power to assert their voices to transform their reality. We show empathy by listening attentively as people talk, and we listen to understand.

Research teams can play a role in breaking the culture of silence. When we break the culture of silence, we aim for real authentic participation where people and communities share fully and have equal voice in any decision-making and efforts directed toward change. Lastly, the more we know and understand about the realities of people and the communities where we work, we can engage in ways that avoid unintentional oppression.

Pictures from the Civil Society Stakeholder Forum Consultative Meeting on promotion of dialogue around STIs and Condoms between local stakeholders, February 2023

References:

UNAIDS and AVAC. (2011) Good Participatory Practice: Guidelines for biomedical HIV Prevention trials. Geneva, UNAIDS.

Freire, P. (1998). Pedagogy of the freedom: Ethics. Democracy and civic courage. Lanham: Rowman and Littlefield.

Schenk, R., Nel, H. & Louw, H. (2010). Introduction to participatory community practice. Pretoria: University of Pretoria

Blossom Makhubalo is the Community Engagement Manager for the Aurum Institute CRS in Klerskdorp, South Africa.