Genital fistula among Ugandan women : risk factors, treatment outcomes, and experiences of patients and spouses

Abstract

Background: An estimated 2-3 million women globally and majorly in sub-Saharan Africa and Asia, suffer from genital fistula with an annual incidence of 50,000-100,000 women. Uganda like other low-income countries is not an exception and has an estimated fistula prevalence of 2%, with western Uganda having the highest prevalence of 4% among females aged 15-49 years. The main cause is prolonged and neglected obstructed labour in more than 90% of the cases. Risk factors for fistula vary from one context to another. The consequences of fistula go beyond the individual woman and affect relatives, spouses and the community. There is limited information on lived experiences among women with fistula, their spouses, relatives and communities. With the global end fistula campaign on course, there is need for quality and evidence-based fistula prevention, treatment and social reintegration.

Objective: To determine risk factors for obstetric fistula, compare outcomes of early discharge with catheter versus late discharge after catheter removal, and explore life experiences of fistula patients and their spouses in Uganda.

Methods: From 2012 to 2015, we conducted a mixed methods study with four sub studies: A case control study (I), a qualitative study using focus group discussions (FGDs) among women with fistula (II), a qualitative study using indepth interviews with men whose wives had fistula (III) and a randomized controlled open-label non-inferiority trial among women undergoing fistula repair surgery (IV). Four sub studies were conducted in Mulago (II-IV), Hoima (I &III), Kagadi (I) and Kyenjojo (I) hospitals. In the first sub study (I) that was conducted in western Uganda, we compared background characteristics of 140 cases (women with obstetric fistula) and 280 controls (women without fistula). In the second sub study was the Urogenital Fistula Early and Late Discharge (UFEALD) trial (IV) where we assessed the non-inferiority of early discharge (3-5 days) vs. standard 14 days (late discharge) following surgical repair of fistula in respect to proportion of women with repair breakdown between three days and 12 weeks. We pre-set the non-inferiority margin at 10%. A total of 300 patients were block randomized to two equal groups of 150 each and both groups followed up for 12 weeks. The third and the fourth sub studies were exploratory qualitative studies among women seeking treatment for fistula (II) and spouses whose wives had fistula (III) respectively. The qualitative studies were analysed using content analysis (II) and a composite narrative (III).

Results: Risk factors for obstetric fistula in western Uganda (I) were: caesarean section (adjusted odds ratio [AOR] = 13.30, 95% CI = 6.74–26.39), respondent height of 150 cm or less (AOR = 2.63, 95% CI = 1.35–5.26), baby weight of 3.5 kg or more (AOR = 1.52, 95% CI = 1.15–1.99), prolonged labour (AOR= 1.06, 95% CI = 1.04–1.08. Compared to no education, post primary level of education was protective against obstetric fistula (AOR = 0.31, 95% CI= 0.13–0.72). A total of 25% of the fistulas were due to iatrogenic injury during caesarean section.

The life experiences of women with fistula (II) were characterized by life changes, challenges and strategies to cope. The women were physically changed and challenged, lived in social deprivation and isolation, were psychologically stigmatized and depressed and their sexual life was no longer joyful. The women used both problem- and emotionfocused coping strategies to deal with the challenges. They devised ways to reduce the bad smell of urine in an attempt to avoid any further stigma, rejection and isolation. Amidst coping, they were often left alone and isolated. The women either isolated themselves or were isolated by society, including close relatives and their husbands. Generally women with fistula felt that their marital and sexual rights had been lost.

The men’s experiences (III) while living with a wife who had fistula conflicted with Ugandan culture and norms of masculinity. The men’s lives were greatly affected and felt ‘small’. They however, persevered in the relationship sometimes changing lifestyles but also maintaining what they perceived as roles of men in this context as responsible, caring husbands and fathers. Some men married a second wife but generally viewed marriage as a lifetime promise before God, which should not end because of a fistula. Poverty, inherent love, care for children, and social norms in a patriarchal society compelled the men to persevere in their relationship amidst all challenges. Four of the 150 (2.7%) women in the early discharge group had fistula repair breakdown compared to three of the 150 (2%) in the late discharge group (Difference [Δ] = 0.7% [95% CI = -3.4–4.9], p = 0.697). There were no significant differences in any of the secondary outcomes including complications. A total of 138 (92%) in the early versus 134 (89.3%) women in the late discharge groups had fistula closed and were continent and voiding normally day and night) There were no fatal complications.

Conclusions: Iatrogenic injury during caesarean section, prolonged labour, big baby (3.5 kg or more), short stature (height 150 cm or less), and low/no education are risk factors for fistula (I). Women' with a fistula are challenged physically, socio-economically, psychologically and sexually. Their life is full of adjustments to cope with the stigma, social isolation, and marital sex challenges. They use both make problem- and emotion-focused coping as they deal with isolation, rejection and stigma associated with fistulas (Paper II). Like women, men whose wives have fistula face challenges as individuals but also as members of a hegemonic masculinized society (III). They portray themselves as responsible men fulfilling their culturally assigned roles as men. They cannot go away from their wives even though they feel challenged socially by the stigma associated but believe marriage is a God given role they must fulfil amidst other factors they advance for remaining with their wives like poverty and raising children. Early discharge with a catheter was non-inferior to the standard 14 days of inpatient care and for stable patients following urogenital fistula repair, we recommend a reduced period of hospital-based care of 3-5 days from the current 14 days (IV).