Sharing the Burden: Ugandan Women Speak About Obstetric Fistula

This 69-page report presents the findings and recommendations of a study conducted by EngenderHealth and the Women's Dignity Project in Uganda around obstetric fistula. The research was conducted to understand girls and women's vulnerability to fistula through their own views and experiences, as well as the views of family and community members, and local health care providers. The study provided a platform for women to convey the multi-faceted impacts of fistula, and a means to capture their recommendations for local solutions to prevent and manage the condition. The final key finding from the study is that girls and women need fistula repair services that are available, accessible, and affordable. About half of the women in the study had sought fistula repair, and many had gone to two or more sites before receiving treatment.

Overall, the study involved 82 girls and women living with fistula, 63 family members, 120 community members, 21 health workers, and 54 traditional birth attendants. All of the women who participated in the survey had their fistulas surgically repaired.

The study found that fistula is not only a problem for adolescent girls, but for women of all ages. Just under half of the women whose ages were recorded by the study were 20 years or older when they sustained fistula, and some were on their second or higher pregnancy. This finding expands on the widely held assumption that fistula mainly affects very young women in their first pregnancy. The study found that neither antenatal or delivery care meet standards of professional service delivery. Less than half of the women received standard antenatal blood and urine tests, and none reporting counselling on risk factors and warning signs and symptoms during pregnancy.

According to study, girls and women face multiple barriers in accessing adequate care during delivery, including life-saving caesarean section. The top three limitations to accessing health facilities were lack of money, high transportation costs, and high hospital costs.

The study found that fistula has severe, multi-faceted impacts on affected women and their families. The majority of women in the study who were married at the time they sustained fistula were subsequently divorced, and nearly all the women suffered isolation. The majority of women said that fistula affected their ability to work and provide for their families. Women and their families also incurred substantial costs in seeking access to treatment and in purchasing supplies to manage the condition on a daily basis.

The study includes key recommendations for each finding. It suggests that public education and programmes to prevent fistula must be designed for all women of reproductive age. In particular, maternal health services should provide accurate and timely counselling to women and family decision-makers on the danger signs of pregnancy and delivery, and encourage women to have a birth plan in place. Health workers need to be supported through training and supervision to provide this counselling.

The study also recommends introducing concrete strategies to reduce the barriers to safe delivery and to expand access to skilled labour and delivery care, including caesarean section. Training health workers and increasing the availability of basic emergency care would dramatically reduce maternal mortality and morbidity.

The report further suggests that broad-based educational and advocacy programmes are needed to dispel negative myths about fistula and reduce the stigma associated with the condition, as well as encourage social support for girls and women living with fistula. Consistent and reliable information on where and when repair services are available also needs to be disseminated to assist women to access treatment quickly. Radio and outreach through faith-based institutions may represent effective communication channels to reach women in rural areas.

Expanded access to fistula services is also required to reach those in need. Women must not be barred from care due to inability to pay, therefore repair services must be provided free or at minimal cost. Ideally, the costs of transportation to the facility and back home should also be covered. In addition, there is a need for more surgeons and other health practitioners specifically trained in fistula treatment to expand the availability of repair and reduce waiting times. 

The report concludes that effective and efficient maternal health strategies are known to dramatically reduce maternal mortality and morbidity, and strong political will and commitment can make this happen. By safeguarding maternal health and well-bring, the health, economic, and societal benefits will be enormous, far outweighing any investments made.