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Giving a voice to the voiceless: Susan Bartels

[Susan Bartels]When war or environmental disaster strikes a country, society descends into chaos. Homes, neighbourhoods, hospitals, schools and other essential services are destroyed. Citizens are killed, maimed and often forced to flee to refugee camps in new and unfamiliar territory. There, poor or nonexistent housing, hunger, disease, and further violence compound the misery of their displacement.

Susan Bartels, a clinician scientist and attending physician in the Queen’s Department of Emergency Medicine, investigates the plight of people whose lives are torn apart by conflict, earthquakes or other natural calamities. Over the past 10 years, her global public health research with the Harvard Humanitarian Initiative has taken her to Lebanon, Gabon, Kenya, Ethiopia, Tanzania, and the Democratic Republic of the Congo (DRC) – often-dangerous places that have been ravaged by internecine wars or drought and overwhelmed by millions of refugees and victims of violence.

The broad goal of Bartels’ research is to help improve the delivery of humanitarian aid and services, especially to women and children. One of her current projects is set in Lebanon, where hundreds of thousands of refugees from the civil war in Syria are housed in crowded, makeshift camps near the Syria-Lebanon border. Bartels has found that, since the onset of the war, families have begun to marry off daughters as young as 13. In rural Syria, Jordan and Turkey, marriages are arranged by the parents, but the brides are typically in their late teens. The men they marry might be as old as 50.

Bartels is exploring possible reasons for the lower marriage age using a novel research tool called SenseMaker. In it, people simply relate personal stories that researchers record on an iPad. Afterwards, the interviewees identify major themes in their stories using an app that converts their answers into digital data that can be plotted on charts and graphs. This “mixed method” allows the meaning in oral anecdotes to be quantified in a way that reduces researcher bias that would otherwise skew the results.

Bartels also completed another project – benignly billed as a “Women and Children’s Health Study” – in the eastern DRC, where rebel militants occasionally raid and burn villages, kill men and kidnap women and girls. The victims are transported to forest hideaways where they are often raped and otherwise abused. Some of them become pregnant by their abusers. The phenomenon is well known.

What’s less understood is the later plight of women who become pregnant or bear a child as a result of sexual violence. If the women are freed by their captors or manage to escape, their problems are far from over. In this part of rural Africa, women who have been raped or have an abortion are stigmatized. Friends and family shun them. Husbands often leave the women and their children. If the husband stays, he might abuse his wife for bringing dishonour upon the family. The child of a raped woman fares no better because they may be seen as the enemy’s progeny. As a result, they may be prevented from attending school, be ostracized, or be the last to be fed or given medical care.

For this study, Bartels used another relatively novel research technique called respondent-driven sampling (RDS), in which the sexually abused women recruited other abused women to tell their stories of stigmatization to the researchers.

“The recruitment was all done by peers, so we as researchers did not approach subjects primarily and ask them to participate,” says Bartels. “We stayed in the study office and waited for participants to come to us. There was a lot of doubt about whether they would come, but they did. In high numbers.”

In about a month, the study gathered 850 stories from a vulnerable, highly stigmatized group that would normally be difficult to reach using more traditional research methods.

By strategically using innovative research approaches, Bartels is helping the voices of these women, and those of other vulnerable groups affected by war and disaster, to be heard. Ultimately, she hopes, their stories will lead to improved health outcomes in troubled regions around the world.

Alec Ross
(e)Affect Issue 7 Spring 2015