It was after our Kenyan research colleague Juliet recounted her first interview with Evelyn, who is from Mathare, one of the most densely populated informal settlements in Nairobi, Kenya, that one of our project’s key learnings emerged. Evelyn never left her home for fear of catching COVID-19, and yet Juliet told us she had been extended an invitation to Evelyn’s son’s first birthday party and might attend. When we, two researchers based in the United Kingdom and Canada, asked Juliet if she planned on attending, her answer was “most likely yes” because “I don’t know anyone with Corona.” Amidst the first wave of COVID-19, Kenya introduced a series of measures to limit movement and implement lockdowns, and we had anticipated some reluctance in response to government messaging about the dangers of the virus, but not to the extent internalized by members of our own research team. Our team had aligned on the project’s goal—to uncover communities’ perceptions of the pandemic’s impact across Kenya—but had missed the reality that individual perceptions and experiences of COVID-19 among our study participants, and even local researchers, varied greatly with our own.
Our conversation with Juliet was the beginning of a shift in how we attended to our positioning and to the data emerging in our research to reframe the largely biomedical and clinical angle taken in global health conversations. Our new way of working became a means of striving towards equity through research outputs as well as through the research process itself.
Pathways and the context of global health
COVID Pathways is an offshoot of a larger global health endeavor, called Pathways, which is aimed at identifying the social, cultural, and environmental factors that amplify dimensions of maternal and infant vulnerability among highly marginalized families across low-resource settings in Kenya and India. This larger effort is an interdisciplinary project, funded by the Bill & Melinda Gates Foundation, to develop targeted solutions that have lasting positive impact on reproductive, maternal, neonatal, and child health outcomes. The work was designed from the assumption that to achieve the Sustainable Development Goals and significantly improve the health and well-being of women and their young children, the field of global health and development must do more to consider and address risk to poor health outcomes through the lens of social, cultural, and environmental vulnerability.
From 2018, our Pathways team of anthropologists, designers, behavioral and data scientists, and global health experts were immersed in the lives of women and their families, both through secondary research and in-person ethnographically informed design research, across diverse regions of Kenya and Uttar Pradesh and Bihar states in India. Extensive field research in Kenya allowed us to create intimacy with research participants and their families, but it also offered the opportunity to establish more sustained relationships with local researchers who joined us as members of the Kenyan Pathways team.
With the onset of COVID-19, we re-engaged with the same families who had welcomed us into their homes during the early stages of the project in an effort to humanize what COVID-19 looked like for them and ultimately drive more context-specific global health interventions. National directives and data about the virus were changing almost daily, so we planned to remain exploratory and fluid, allowing the evolving day-to-day field reality to steer the process.
Lockdowns and limits to mobility prompted us to explore new ways of facilitating our work. We restructured our processes so that they became remotely managed and locally driven. In practice, this meant that the local team—four women, each born and raised in one of our research geographies—who had been instrumental in connecting us with families, navigating communal dynamics, and providing live translation during field conversations, now shifted to conducting the research themselves. Their familiarity with the project goals made them well-positioned to adopt new roles as researchers, despite a lack of formal training and facilitation experience.
While the global health community, reliant on primarily quantitative and biomedical data, was rapidly trying to design and implement solutions aimed at alleviating the adverse health consequences of the virus, exploratory and real-time engagement with participants taught us that COVID-19 was not being experienced as a biomedical illness, but rather as a social and economic one. The project became not only about identifying what is critical to know and relevant to hear, but also how to articulate a message of humanity and actionability—how people were experiencing the pandemic needed to be taken into account when developing responses.
Applying anthropology in the arena of global health and development leads to shorter timeframes for research and raises the question of whether we are gaining a full picture of life as it is experienced. Local researchers provide a critical corrective: they can return to a participant and their daily lives in real time to go deeper into certain stories or trace their thread as the effects of a crisis unfold. For example, one of the Kenyan women who we spent time with had an aunt who ended up in the hospital in the early days of the pandemic and subsequently died. We were only able to piece this story together because of the multiple touch points our researcher had with this participant. Our local researcher’s ability to see the value in following up on this story over the course of a month provided rich insights into the long-lasting effects on families of the government-enforced COVID-19 restrictions. At the same time, this process required us to rethink our own positioning and adapt to listening and following our local researchers when it came to identifying which on-the-ground experiences needed more focus.
The local researchers had access to community gossip and history, and this more emic approach provided us with context and understanding that we would not have otherwise been able to develop. For example, one woman we wanted to follow up with was repeatedly unable to meet with us. We couldn’t understand why her initial enthusiasm to be a part of the research had dissipated so quickly. Eventually, we learned she was often too drunk to be interviewed, and that finally, unable to pay her rent, she had relocated to a more rural village. Where we might have simply moved on from this participant, a lack of data became information on the extent to which COVID-19 was taking a toll on women’s social and emotional lives. Working with local researchers in this way allowed us to enter long-established social networks and more rapidly learn about the logics and histories of these networks—knowledge that can often only be gleaned through longer fieldwork engagements. Local researchers led us in exploring how the pandemic was affecting life in real time, from the individual’s experiences and not from what the global health community presumed those experiences to be.
Being continually in touch with the researchers through WhatsApp to align on logistics, discuss topics, or simply build trust also enabled us to be part of their lives and privy to the challenges they faced in accomplishing the various research tasks. One of our researchers abruptly stopped responding to our messages. A few days later, we learned she was experiencing domestic violence. Her husband’s job had changed to night shifts, and his presence within the home all day led to increased control and tension. In the midst of safely moving with her young son into her parent’s home, she had stopped buying airtime to check her messages. This viscerally brought to life what population-based data was only just beginning to hint at: the pandemic was driving up rates of domestic violence.
While these examples all point to the benefits of locally driven research, a critical challenge was how to support researchers without formal training to become aware of their biases. We had selected the researchers based on how they had demonstrated, in the earlier phases of the larger Pathways work, an eagerness to learn and a natural ability to develop rapport and establish immediate connection during interviews. The local researchers are often encouraged to have answers instead of leaning into the subjective nature of their own experience and can be more inclined to stop at a surface level of questioning. We came to realize that this initial lack of probing came from their immediate proximity within the research context and the assumption that they understood why the respondents were acting in the ways they were. We had to help them discover the research value in always asking for examples from the participant’s own life and experience. To illustrate this, we needed to be attuned to when these moments might happen. For example, during interviews participants often questioned whether government messaging around COVID-19 was propaganda and if the data being shared could be trusted. With histories of their own—including negative experiences with and beliefs about authority figures—it was harder for researchers to remain neutral and probe for the “why,” especially when it came to questions they thought they knew the answer to.
As applied anthropologists working on public health projects in low-resource settings, we are purposeful in developing work practices that attempt to mitigate the power dynamics at play between us and the people whose lived experience we seek to understand. We see our role as social researchers akin to translators who are responsible for surfacing the experiences, emotions, and belief systems of our participants, and passing this knowledge along to our stakeholders with whom we will then identify priorities, develop strategies, and design programming responses. Yet, and perhaps because of, the very nature of the field we work in, it is impossible to overlook the fact that our work often perpetuates the unequal systems that we aim to dismantle.
Shifting our team structure brought us closer to the nuances and small details of everyday life, but it also required additional translation within our project team in ways that we had not anticipated. Differences in national and regional responses, access to information and data, proximity to testing and trusted health facilities, and mental models for health and health care, all inform our understanding of COVID-19. As the work progressed, we could see how the Kenyan research team’s lived experiences of COVID-19 were substantially different from the foreign research team, and so too was their framework for making sense of it.
Sharing our experiences of COVID-19, including hesitations, frustrations, and sources of mistrust prompted all of us to more deliberately consider our belief in the realness of COVID-19 as a product of our time and place. One of our local researchers is now an advocate and outspoken leader within her community when it comes to matters of community–police relations, after having lost her brother to police violence years ago. For her, COVID-19 became an intensification of existing networks of oppression, as she experienced the strict enforcement of curfews and witnessed instances of police violence unfold within the very densely populated informal settlement where she lives.
Collaboratively, we created a discussion guide that deliberately elicited conversation around daily decision-making as well as the greater sociopolitical context in which the pandemic was unfolding to delve deeper around notions of trust, health, and wellness. During virtual working sessions to deconstruct each interview we collectively explored the relationship between the research context and an interviewer’s individual experience with and perception of COVID-19. As these shifts in understanding and perspective took place, we observed how following the lead of our researchers supported the creation of deliverables that provided our key global health funder with a deeper understanding of how Kenyans were living through the pandemic. For example, one of the local researchers recovered from COVID-19 during the course of the research and was disinvited from a wedding nearly two months before it was to take place as a result. Her lived experience prompted her to introduce topics of stigma and exclusion more deliberately within the research conversations, ultimately deepening our understanding of the social and emotional implications of the disease.
It is from these interactions that some of the research’s key insights emerged: understanding the sociocultural context of a global health challenge is a critical step in designing effective interventions, COVID-19-specific interventions would be more effective if they took into account that women are experiencing the disease not as a health crisis but as a socioeconomic one, and failing to take into account how constituents are experiencing the pandemic has the potential to erode trust in government and social institutions. These interactions and the evolution they enabled toward co-ownership of the subject matter were also essential moments in our process to contribute to the overall Pathways goal of addressing women’s vulnerability. We cocreated outputs, followed the lead of local researchers when prioritizing research themes, and adjusted timelines to account for localized experiences. Our intention was to try out ways in which team structures and collaborations can become flatter to drive project goals that are more representative of those whose lives we seek to understand. Reflecting on this approach, we came to see how our role includes making space for those who traditionally have been given less room.
Shifting vulnerabilities, shifting power
As the project developed, we found ourselves faced with a larger conundrum. The limits of the impact of our project in the face of the evolving pandemic, and the uncertainty within the global health community as to how to respond, challenged us to explore how we might change our processes and shift centers of power.
Perhaps one of the most insidious ways power is held on to is through the control of expertise and knowledge. From NGO executives to directors of national health programs to the embodied expertise of medical professionals, information and performing our control over or access to it, is a primary means for holding power over others. If our aim with Pathways has been to make global health more responsive to issues of equity, we cannot simply “empower” the most disadvantaged; we must also be willing to “disempower” ourselves. We moved from leading our researchers in participant observation and conducting rigorous in-depth interviews to sharing this experience and ultimately following our researchers as they took us in new directions. We trained a group of Kenyan women researchers in qualitative and human-centered design methodologies and in the analysis of data collected from those approaches. Some might see this as a diminishment of the rigor that applied anthropological research aims to achieve, but we embraced this opportunity to pursue a more equitable global health process.
We have seen this transformation in the way we work contribute to changing the perspective of a large global health funder. But perhaps the greatest outcome is what we see as an emergent shift in a redistribution of power—a challenge to who gets to speak and for whom.
Colleen Pesci is a visual artist, educator, and curator/founder of The Casserole Series.