Risk and Resilience
Approximately two million girls and women are estimated to be living with obstetric fistula worldwide, yet fistula remains one of the most neglected issues in women’s health and rights. It devastates lives, causing women, in most cases, to lose their babies and to live with the humiliation of leaking urine and/or feces constantly. Fistula also affects families: The financial burden of paying for treatment and transport to hospitals, together with the loss of one income-earner, places significant strains on the families of girls and women living with fistula. Families also suffer stress and worry about the impact of fistula on the girl or woman. Examining fistula from the perspectives of girls and women living with the condition provides vital evidence on how health care and social systems often fail to meet women’s basic needs.
EngenderHealth and the Women’s Dignity Project have conducted qualitative research in Tanzania to understand the many dimensions of fistula and its related social vulnerability. This work explores the experiences and views of girls and women living with fistula, as well as those of their families and communities and of the health workers who care for them. The study also explores participants’ recommendations on locally appropriate solutions for preventing and managing fistula. Key findings from the study include the following:
- Fistula affected girls and women of all ages, both at first pregnancy and in later pregnancies. The median age at which women in the study developed a fistula was 23. Fewer than half of the women were 19 or younger when the fistula occurred. In addition, about half of the women were in their second or higher pregnancy.
- Antenatal care services, while widely available and used, were inconsistent and inadequate. A majority of the women in the study attended antenatal care services—nearly all of them at least twice—but the services they received were inconsistent and inadequate and differed greatly from Ministry of Health guidelines.
- The lack of birth preparedness, including basic information on childbirth and on taking action around “the three delays,” increased the risk of obstetric fistula.
- Nearly all of the girls and women in the study who began labor at home made at least one move to get appropriate care, and a majority faced multiple delays in reaching a facility with the needed services.
- Lack of access to emergency caesarean section posed a great threat to women’s lives. For girls and women in the study, the most commonly cited barriers to facility-based delivery were that they lacked money and that the hospital was too far away. Nearly all of the women who made a move during childbirth eventually got adequate care at the hospital level and not at a peripheral-level facility.
- The cost and inaccessibility of high-quality fistula repair services represented a barrier to care for many girls and women. Women and their families who accessed fistula treatment sacrificed significant amounts of time and money to do so, including selling assets to pay for transport and treatment.
- Even though most women with fistula have support from others, the emotional and economic impacts of fistula were substantial for the women themselves, as well as for their families. For example, the majority of girls and women said that they felt supported by another friend or family member, but many also reported feeling the need to isolate themselves out of shame.
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Several report briefs are also available: