Guest Post: Fistula Interviews in Kamuli

This December, Emma Richardson, a student at the University of Notre Dame, visited Uganda to perform interviews with fistula patients working with Uganda Village Project. 

Before traveling to Uganda to interview patients at Kamuli Mission Hospital with the help and support of Uganda Village Project, I had done extensive reading and research. Fistula initially caught my attention as I read Nicholas Kristof and Sheryl WuDunn’s Half the Sky, and I decided to focus on fistula for my senior thesis as a Sociology and Pre-Med major at the University of Notre Dame.

Visiting a fistula patient (left) in her home with the Fistula Coordinator, Loy (right)

Obstetric fistula is characterized by an abnormal passageway between the vagina and bladder. There are several causes for this condition, but obstructed labor is the primary cause. During prolonged labor, the pressure from the fetal head on the soft tissues of the mother’s vagina and bladder can restrict blood flow—leading to tissue death [1]. As this tissue dies, it sloughs off and creates a fistula [2]. Surgical mishaps can also lead to the formation of a fistula.

As it is a largely preventable maternal morbidity, obstetric fistula is almost entirely non-existent in the United States, so I knew that my research would require collaboration with an organization working abroad. I spent eight weeks in Uganda in June and July 2012 interning at a clinic in the eastern region. Due to my familiarity with Ugandan culture and wonderful experience last summer, I decided to start my search for an organization to work with in Uganda. I stumbled upon the Uganda Village Project during the course of my research, and I was instantly impressed with their fistula outreach programs and involvement with the surgical camps at Kamuli Mission Hospital. I contacted UVP, and we were able to coordinate my research. It was incredibly exciting to find such a great organization to work with, and I could not be happier with the partnership.

Kamuli Mission Hospital grounds

I was familiar with the paths to fistula development and the long, winding paths to surgical repair for the small minority of women able to negotiate their ways to treatment. Though I had an idea of what to expect during my interviews, I found myself in awe of the strength and perseverance embodied by the women I spoke with. Although many of the stories followed a similar course, each was distinctly unique. All of the women were challenged: some women were faced with poverty, others suffered from social stigmatization due the incontinence that usually accompanies fistula, and some were rejected by loved ones—husbands, parents, siblings, and friends. Yet, despite these challenges, these women had been fortunate enough to receive care. Faced with a devastating condition and often lacking sufficient social support, these women had endured months, years, and even decades with obstetric fistula, but had finally gotten the care they so desperately needed.

Interviewing a former fistula patient (right) with my translator, Hatika (middle)

When so many women suffering from fistula fail to ever receive care, how did these women do it? That was the focus of my interviews. I wanted to know what tipped the scale for these women. Though my data analysis is still in progress, I have identified several recurring pathways to care for these women.

The Social Network: Many women reported hearing about Kamuli Mission Hospital and Uganda Village Project from friends, community members, and neighbors. These individuals were key in providing a gateway to care for women suffering from fistula. They spread the word about surgical repair, successful treatment at Kamuli Mission Hospital during the fistula camps, and often even contacted UVP’s Fistula Coordinator to speak to these women.

UVP Outreach and the Fistula Coordinator: Other women initially learned about the fistula camps through Uganda Village Project outreach initiatives for fistula. After learning about fistula, community members would often direct the UVP outreach staff to a woman in the community known to be suffering from that condition. Fistula coordinators played an important role informing women about the surgeries and providing them with the courage to undergo surgical repair.

Radio Advertisements: Some women also learned about Kamuli Mission Hospital’s fistula camps via radio ads. For many, this was the first time they had heard of treatment for their condition.

These three main pathways to care are not mutually exclusive. Some heard about the surgery on the radio, but were only convinced to seek care once they heard of another woman’s successful surgical repair. Other women did not rely on any of these patterns in their journeys to care at Kamuli Mission Hospital.

Despite the uniqueness of each story, nearly every woman expressed her gratitude to Uganda Village Project, Kamuli Mission Hospital, and the visiting fistula surgeons. The fistula camps have given these women the comfort that they are not alone in their problems and hope for a better future.

My translator Hatika (left) with two fistula patients

Like the women I spoke with, I am very grateful to the Uganda Village Project and Kamuli Mission Hospital staffs. Everyone was incredibly accommodating and helpful during my research, and I cannot thank you enough for your help. Uganda Village Project is doing amazing work in the Iganga region, and it was inspiring to hear how life-changing surgery has been for these women.

References

[1] Cook, R. J., B. M. Dickens and S. Syed. 2004. "Obstetric Fistula: The Challenge to Human Rights." International Journal of Gynecology & Obstetrics 87(1):72-77.

[2] Hilton, P. 2003. “Vesico-vaginal fistulas in developing countries.” International Journal of Gynecology and Obstetrics 82(3):285-95.