Maybe We Should Let the Research Transform Us First: Lessons from Participatory Research with Refugee Women

Participatory research, refugee women’s health, and the small forms of justice that happen before and beyond publication.

Reading Time: 4 min

That summer in Mavrovouni refugee camp on Lesvos, Greece - one of the Aegean Sea’s fraught portals into Europe for people denied the possibility of travelling through regular routes - the temperature reached 40°C. Heat rose from the gravel, babies cried in stuffy tents, people were stuck for hours in food lines, Wi-Fi disappeared, and someone we had spent days trying to find for an interview had suddenly been transferred away.

We were trying to do something not yet done: carry out a comprehensive sexual and reproductive health analysis in a European refugee camp, not simply about the people living there, but with them leading the work. When I arrived in Lesvos, I had no idea I was entering a community of women whose faith, humour, discipline, care for one another, and refusal to give up would transform the way I saw the world.

I still remember my astonishment when, every time something went wrong, Kowthar, one of the women representing the Somali community - who would later become my sister – would serenely say, “No problem, we fix it.”

The Knowledge Was Already There

This can-do attitude carried the project. And a few years later, as our research article from the quantitative arm of the project was published last week - part of a larger participatory mixed-methods study led by Dr. Jamilah Sherally - I think about how impossible the work would have been without the 9 refugee co-researchers who represented the languages and communities living there.

I think about how impossible the work would have been without the 9 refugee co-researchers who represented the languages and communities living there. They were not there as translators or assistants, but co-producers of knowledge in a situation where they were the experts.

They were not there as translators or assistants, but co-producers of knowledge in a situation where they were the experts. After 3 weeks of discussion, training, disagreement, and 7 drafts, the household survey went from 232 questions to 119. It remained ambitious, covering maternity care, contraception, menstruation, abortion, female genital mutilation and much more.

The long discussions were not an unnecessary delay, but collective labour that made the study rigorous and honest enough to reflect women’s actual sexual and reproductive health needs in Mavrovouni. Without that process, we would have asked narrower questions and received narrower answers. For more on how the co-researchers shaped the study from design to dissemination, see How to practise what you preach: practical considerations for participatory global health research.

In a camp shaped by deprivation, uncertainty, and bureaucratic violence, our team ended up managing to interview 247 women of reproductive age, marking the first situation analysis in a European refugee camp.

When Health Is Treated as an Emergency, and Violence as Policy

The findings echoed what humanitarian sexual and reproductive health literature has long shown: emergency care is prioritised while preventive, long-term, rights-based needs disappear. Significantly, our study found that more than half of the women had experienced at least one pushback before reaching Lesbos, and 2 women reported losing a child during the sea journey. These findings cannot be separated from the European border system in which they occurred: human rights organisations have repeatedly documented violent pushbacks in Europe, while EU documents show billions of euros in support to Greece for migration and border management.

Justice Does Not Have to Wait

We could not have done this research without Kowthar and the other co-researchers; that is a methodological fact. But the project also mattered because it recognized their value in a system where asylum procedures create gaps in people’s CVs and force futures into waiting. Hiring refugee women said: your knowledge and skills count now, and your future does not begin after a government decides you can have one.

Audrey Benson and Kowthar Mohamed presenting the quantitative study at the ECTMIH congress in Hamburg, and accepting the award for best poster.

Like many others, Kowthar eventually moved on from Greece and applied for asylum in Germany. Later, Jamilah invited us to present two studies from the larger project at ECTMIH in Hamburg. Just days before we travelled, Kowthar received a rejection on her asylum application, but she came anyway. She stood in an academic space and presented evidence produced by women whose stories are so often doubted or minimised, while her own story had just been doubted by the asylum system.

Participatory Action Research taught me that while we fight for structural change, we are still responsible for smaller forms of justice already within reach: who is paid and credited, who speaks and is listened to, who gets to be believed, and who is given room to grow into a future beyond survival.

And when our poster presentation won an award, going to the stage to accept it felt complicated. We knew an award did not stop violent border policies. But if justice is only imagined at that scale, it can become so vast that people feel paralyzed by it. Participatory Action Research taught me that while we fight for structural change, we are still responsible for smaller forms of justice already within reach: who is paid and credited, who speaks and is listened to, who gets to be believed, and who is given room to grow into a future beyond survival.

The Wound Is The Place Where The Light Enters

A few weeks ago, Kowthar called me. After years of rejection, fighting and prayers, she had received asylum. We cried at the relief that there was another small piece of justice.

Kowthar should not have had to be brave in the ways she has been forced to be brave. But if she can live under the weight of rejection and still show up to study the system, name its violence, and demand better, then we can do the same. We can refuse to wait until results are published before pursuing justice, recognizing participation as an ethical and human commitment.

Even though everything may seem broken now, we can look at one another and say what Kowthar taught us to say: “We fix it.”