Why community collaboration is important in our research

Omosefe Osinoiki, April 2024

I’m a researcher for Sightsavers, and in April 2023, I was in the field for a study on female genital schistosomiasis (FGS) in Nigeria.

Alongside our team of gynaecologists, laboratory scientists, laboratory technicians, and other researchers, I was investigating the living conditions and environment of women who often go unnoticed but bear the burden of this neglected tropical disease (NTD).

The goal of our research trip was clear: gather information and data that informed our research and, more importantly, give a voice to these women and their experiences.

In the southwest of Nigeria, our team was working in a community in Irele in Ondo State. It was a small, isolated rural community surrounded by large palm and kola nut trees. In the community, we encountered some women who weren’t sure if they should participate in the research. We felt that there was a sense of reservation from the women due to the delicate nature of the subject and cultural beliefs (including a hesitancy to be examined by a gynaecologist, concerns about urine being used in rituals and want for privacy about their health).

Researcher Omosefe Osinoiki in the field.
Researcher Omosefe Osinoiki.

What is FGS?

Schistosomiasis is an NTD caused by parasites released by freshwater snails. FGS is a complication of schistosomiasis that affects women and girls.

Read more about the condition on Global Schistosomiasis Alliance

Two women collect water from a river in Nigeria.
Schistosomiasis infection can occur during contact with infested water, often through bathing and washing clothes.

So, instead of advancing with our planned guide and structure, we paused our work and spoke with the women. Our conversation then went beyond the medical applications of FGS. We heard their viewpoints as we listened to their stories and, in doing so, unearthed levels of understanding that went beyond our original objectives.

One woman spoke candidly about her experience, and she made a lasting impression on me. Her story represented the struggle of many women in the community. She said that women do not know about FGS, yet many experienced the symptoms we described, and some of them felt uncomfortable speaking to others about their health. But despite their discomfort, many women had received treatment (contemporary or herbal) that proved ineffective.

After speaking with the women and hearing their concerns, we alleviated their worries about being examined and explained that all data collectors, interviewers and gynaecologists on the team were women. We also decided to pivot to a more personal approach for the qualitative data collection. Instead of running the planned focus group discussions, we conducted an in-depth discussion with each of the women, allowing them to talk privately with us and without other community members present.

“We listened to their stories and unearthed levels of understanding beyond our original objectives”

A female researcher speaks to a woman about her experience of female genital schistosomiasis.
An interviewer (right) talks to Ademosun, an FGS patient.
All photos © Sightsavers/Taiwo Aina

As a researcher, we understood that we needed to modify our approach to capture the core of their experiences fully. In addition to our learnings from the community in Irele, we consulted with women’s groups, health care professionals and community leaders. Ensuring that our research was a cooperative endeavour rather than an imposition became our guiding philosophy. By using this method, we established a secure environment for learning, sharing and support.

The moral of this story is that collaboration with communities is important when trying to achieve research. This echoes the need for respect for different communities’ unique contexts. When working in the field, we must adapt to navigate unforeseen challenges and collaborate to bridge the gap between researcher and research. As I reflect on this experience, it is a constant reminder that in the world of research, our methodologies must be as dynamic as the communities we aim to understand.

Ultimately, our fieldwork experience went beyond the parameters of gathering data; it proved the strength of authentic connection and the significant influence of honouring the narratives that communities entrust us with. Only when these complexities are untangled can we eliminate NTDs.

Two women wearing colourful headscarves lean together and smile.

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Omosefe Osinoiki is a research associate at Sightsavers, focusing on neglected tropical diseases in sub-Saharan Africa. She is based in Nigeria.


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