The Promise and Neglect of Follow-up Care in Obstetric Fistula Treatment in Uganda

Abstract

Considered the most severe of maternal morbidities, obstetric fistula is a debilitating childbirth injury that results in complete incontinence with severe physical and psychosocial consequences.The primary intervention for women with obstetric fistula is surgical repair, and success rates for repair are reported between 80% and 97%. However, successful treatment is commonly defined solely by the closure of the fistula defect and often fails to capture women who continue to experience urinary incontinence after repair. Residual incontinence post-fistula repair is both underreported and under-examined in the literature. Through a novel mixed-method study that examined clinical, quantitative, and qualitative aspects of residual incontinence post-repair, this chapter draws on in-depth interviews with women suffering with residual incontinence and fistula surgeons, participant observation, and a desk review of fistula policies and guidelines to argue that an inadequate model of fistula treatment that neglects follow-up care exists. We found that obstetric fistula policy has been determined in large part over the years by international development agencies and funding organizations, such as international nongovernmental organizations (INGOs). We argue that the neglect in follow-up care is evident in fistula policy and can be traced to a donor-funded treatment model that fails to prioritize and fund follow-up care as an essential component of fistula treatment, instead focusing on a “narrative of success” in fistula treatment. As a result, poor outcomes are underreported and women who experience poor outcomes are largely erased from the fistula narrative. This erasure has limited the attention, resources, research, and dedicated to residual incontinence, leaving out women suffering from residual incontinence largely without alternative treatment options.