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

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)

Social Experiences of Women with Obstetric Fistula Seeking Treatment in Kampala, Uganda

BackgroundObstetric fistula is a preventable and treatable condition predominately affecting women in low-income countries. Understanding the social context of obstetric fistula may lead to improved prevention and treatment.ObjectivesThis study investigated social experiences of women with obstetric fistula seeking treatment at Mulago Hospital in Kampala, Uganda.MethodsA descriptive study was conducted among women seeking treatment for obstetric fistula during a surgical camp in July 2011 using a structured questionnaire. Descriptive statistics were computed regarding sociodemographics, obstetric history, and social experience.FindingsFifty-three women participated; 39 (73.58%) leaked urine only. Median age was 29 years (range: 17-58), and most were married or separated. About half (28, 47.9%) experienced a change in their relationship since acquiring obstetric fistula. More than half (27, 50.94%) acquired obstetric fistula during their first delivery, despite almost everyone (50, 94.3%) receiving antenatal care. The median years suffering from obstetric fistula was 1.25. Nearly every participant's social participation changed in at least one setting (51, 96.23%). Most women thought that a baby being too big or having kicked their bladder was the cause of obstetric fistula. Other participants thought health care providers caused the fistula (15, 32.61%; n = 46), with 8 specifying that the bladder was cut during the operation (cesarean section). Knowing someone with obstetric fistula was influential in pursuing treatment. The majority of participants planned to return to family (40, 78.43%; n = 51) and get pregnant after repair (35, 66.04%; n = 53).ConclusionStudy participants experienced substantial changes in their social lives as a result of obstetric fistula, and there were a variety of beliefs regarding the cause. The complex social context is an important component to understanding how to prevent and treat obstetric fistula. Further elucidation of these factors may bolster current efforts in prevention and holistic treatment

Genital fistula among Ugandan women: Risk Factors, Treatment Outcomes and Experiences of Patients & Spouses

This is PhD thesis was to determine the 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.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 in depth 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 emotion focused 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)

Social Experiences of Women with Obstetric Fistula Seeking Treatment at Mulago National Referral Hospital in Kampala, Uganda

This study investigated social experiences of women with obstetric fistula seeking treatment at Mulago Hospital in Kampala, Uganda.BACKGROUND Obstetric fistula is a preventable and treatable condition predominately affecting women in low-income countries. Understanding the social context of obstetric fistula may lead to improved prevention and treatment. O B J E C T I V E S This study investigated social experiences of women with obstetric fistula seeking treatment at Mulago Hospital in Kampala, Uganda. METHODS A descriptive study was conducted among women seeking treatment for obstetric fistula at Mulago Hospital during a surgical camp in July 2011 using a structured questionnaire. Descriptive statistics were computed regarding sociodemographics, obstetric history, and social experience. F I N D I N G S A total of 53 women participated; 39 (73.58%) leaked urine only. Median age was 29 years (range: 17-58), and most were married or separated. About half (28, 47.9%) experienced a change in their relationship since acquiring obstetric fistula.More than half (27, 50.94%) had acquired obstetric fistula during their first delivery, despite almost everyone (50, 94.3%) receiving antenatal care. The median time suffering from obstetric fistula was 1.25 years. Nearly every participant’s social participation changed in at least one setting (51, 96.23%). Most women thought that a baby being too big or having kicked their bladder was the cause of obstetric fistula. Other participants thought health care providers caused the fistula (15, 32.61%; n = 46), with 8 specifying that the bladder was cut during the operation (cesarean section). Knowing someone with obstetric fistula was influential in pursuing treatment. The majority of participants planned to return to family (40, 78.43%; n = 51) and get pregnant after repair (35, 66.04%; n = 53). CONCLU S I O N Study participants experienced substantial changes in their social lives as a result of obstetric fistula, and there were a variety of beliefs regarding the cause. The complex social context is an important component to understanding how to prevent and treat obstetric fistula. Further elucidation of these factors may bolster current efforts in prevention and holistic treatment

“As a man I felt small’: a qualitative study of Ugandan men’s experiences of living with a wife suffering from obstetric fistula

The effects of obstetric fistula surpass the individual woman and affect husbands, relatives, peers and the community at large. Few studies have documented the experiences of men who live with wives suffering from fistula. In this study, our objective was to understand how fistula affects these men’s lives. We conducted 16 in-depth interviews with men in central and western Uganda.The effects of obstetric fistula surpass the individual woman and affect husbands, relatives, peers and the community at large. Few studies have documented the experiences of men who live with wives suffering from fistula. In this study, our objective was to understand how fistula affects these men’s lives. We conducted 16 in-depth interviews with men in central and western Uganda. We used thematic narrative analysis and discuss our findings based on Connell’s theory of hegemonic masculinity. Findings show that the men’s experiences conflicted with Ugandan norms of hegemonic masculinity. However, men had to find other ways of explaining their identity, such as portraying themselves as small men but still be responsible, caring husbands and fathers. The few individuals who married a second wife remained married to the wife with the fistula. These men viewed marriage as a lifetime promise before God and a responsibility that should not end because of a fistula. Poverty, love, care for children and social norms in a patriarchal society compelled the men to persevere in their relationship amidst many challenges

Risk Factors for Obstetric Fistula in Western Uganda: A Case Control Study

A case control study comparing background factors of women with obstetric fistula (cases) and women without fistula (controls) was conducted in western Uganda.Introduction: Two million women worldwide are living with genital fistula with an annual incidence of 50,000–100,000 women. Risk factors for obstetric fistula are context bound. Studies from other countries show variation in the risk factors for obstetric fistula. This study was conducted to identify risk factors for obstetric fistula in western Ugandan context. Methods: A case control study comparing background factors of women with obstetric fistula (cases) and women without fistula (controls) was conducted in western Uganda. Data was collected using face-to-face interviews. Univariate, bivariate and multivariate analysis was conducted using Stata 12. Results: Altogether, 420 respondents (140 cases and 280 controls) participated in the study. Duration of labour was used to form the product terms when assessing for interaction and confounding since it was one the most significant factors at bivariate level with a narrow confidence interval and was hence considered the main predictor. After adjusting for interaction and confounding, significant risk factors associated with development of obstetric fistula in western Uganda 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. A quarter of the fistulas had resulted from iatrogenic complication during caesarean section. Compared to no education, post primary level of education was protective against obstetric fistula (AOR = 0.31, 95% CI = 0.13–0.72) and there was no difference between respondents without education and those with primary level education. Conclusions: Surgeons contribute to a big proportion (25%) of fistula cases hence caesarean section being a risk factor in this region. Other risk factors include; prolonged labour, weight of the baby of 3.5 kg or more, respondent height of 150 cm or less (short stature), and low or no education are risk factors for obstetric fistula in western Ugandan

Risk Factors for Obstetric Fistula in Western Uganda: A Case Control Study

This study was conducted to identify risk factors for obstetric fistula in western Ugandan context.Introduction: Two million women worldwide are living with genital fistula with an annual incidence of 50,000–100,000 women. Risk factors for obstetric fistula are context bound. Studies from other countries show variation in the risk factors for obstetric fistula. This study was conducted to identify risk factors for obstetric fistula in western Ugandan context. Methods: A case control study comparing background factors of women with obstetric fistula (cases) and women without fistula (controls) was conducted in western Uganda. Data was collected using face-to-face interviews. Univariate, bivariate and multivariate analysis was conducted using Stata 12. Results: Altogether, 420 respondents (140 cases and 280 controls) participated in the study. Duration of labour was used to form the product terms when assessing for interaction and confounding since it was one the most significant factors at bivariate level with a narrow confidence interval and was hence considered the main predictor. After adjusting for interaction and confounding, significant risk factors associated with development of obstetric fistula in western Uganda 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. A quarter of the fistulas had resulted from iatrogenic complication during caesarean section. Compared to no education, post primary level of education was protective against obstetric fistula (AOR = 0.31, 95% CI= 0.13–0.72) and there was no difference between respondents without education and those with primary level education. Conclusions: Surgeons contribute to a big proportion (25%) of fistula cases hence caesarean section being a risk factor in this region. Other risk factors include; prolonged labour, weight of the baby of 3.5 kg or more, respondent height of 150 cm or less (short stature), and low or no education are risk factors for obstetric fistula in western Ugandan

Living with Obstetric Fistula: Perceived Causes, Challenges and Coping Strategies among Women Attending the Fistula Clinic at Mulago Hospital, Uganda

The study discuses the study to determine perceived causes, challenges and coping mechanisms of women living with obstetric fistula (OF) in Uganda.Aims: To determine perceived causes, challenges and coping mechanisms of women living with obstetric fistula (OF) in Uganda. Study Design: Cross-sectional study. Place and Duration of the Study: Mulago National Referral Hospital Uganda – January to July 2009. Methodology: Thirty women with OF were interviewed on challenges, coping mechanisms and perceived causes of OF using semi-structured questionnaires. Two focus group discussions were held with 10 caretakers of the women with OF and key informant interviews with 10 health care providers. Results: Majority of the women (21; 70%) were young (<25 years) had primary education (20; 67%) and had lived with OF for 2-9 years (20; 67%). The main perceived causes of OF were injury by surgeon (8; 27%), delivery of a big baby (7; 23%) and prolonged labor (4; 13%). Nearly all women with OF (27; 90%) reported that OF had detrimentally affected their health and well being; 26 women (87%) lost their children at birth or within the neonatal period. Families were affected by high cost of treatment (13; 43%); provision of basic items (10; 32%), and suffered stress (17; 55%). Women coped with OF by hiding from the general public (27; 90%), maintaining strict hygiene (25; 83%), ignoring people’s comments (23; 75%) or resorting to prayer (18; 57%). Conclusion: Women with OF experienced physical, emotional and socio-economic challenges and coped with OF through non-effective social measures. There is need to strengthen strategies to prevent OF and enhance OF rehabilitation services for affected women and their families

“I am alone and isolated”: a qualitative study of experiences of women living with genital fistula in Uganda

The study was conducted on women with a genital fistula seeking treatment at Mulago Hospital, Uganda. Data were transcribed and analysed using qualitative content analysis.Background: Globally, 2–3 million women are estimated to have a genital fistula, with an annual incidence of 50,000–100,000 women. Affected women remain silent within their communities, and their experiences often go unnoticed. Our objective was to explore the experiences of Ugandan women living with genital fistulas to understand how their lives were affected and how they coped with the condition. Methods: We conducted 8 focus group discussions (FGDs) with 56 purposively selected women with a genital fistula seeking treatment at Mulago Hospital, Uganda. Data were transcribed and analysed using qualitative content analysis. Results: Women with a fistula were living a physically changed and challenging life, living socially deprived and isolated, living psychologically stigmatised and depressed, and living marital and sexual lives that were no longer joyful. The women’s experiences were full of life changes and coping strategies, and they used both problem- and emotion-focused coping strategies to deal with the challenges. They devised ways to reduce the smell of urine to reduce the stigma, rejection and isolation. While trying to cope, the women found themselves alone and isolated. Women either isolated themselves or were isolated by society, including by close relatives and their husbands. Their sex lives were no longer enjoyable, and generally, women felt a loss of their marital and sexual rights. Conclusion: Women with a fistula make adjustments in their lives to cope with the physical, social, psychological and sexual challenges. They use both problem- and emotion-focused coping to minimise their sense of isolation, as well as the rejection and stigma associated with fistula. These findings are essential for counselling patients, families and community members affected by a fistula. In similar contexts, health programmes should go beyond fistula closure and target communities and families to reduce the stigma and isolation faced by women with genital fistula

“I am alone and isolated”: a qualitative study of experiences of women living with genital fistula in Uganda

The study was conducted on women with a genital fistula seeking treatment at Mulago Hospital, Uganda. Data were transcribed and analysed using qualitative content analysis.Background: Globally, 2–3 million women are estimated to have a genital fistula, with an annual incidence of 50,000–100,000 women. Affected women remain silent within their communities, and their experiences often go unnoticed. Our objective was to explore the experiences of Ugandan women living with genital fistulas to understand how their lives were affected and how they coped with the condition. Methods: We conducted 8 focus group discussions (FGDs) with 56 purposively selected women with a genital fistula seeking treatment at Mulago Hospital, Uganda. Data were transcribed and analysed using qualitative content analysis. Results: Women with a fistula were living a physically changed and challenging life, living socially deprived and isolated, living psychologically stigmatised and depressed, and living marital and sexual lives that were no longer joyful. The women’s experiences were full of life changes and coping strategies, and they used both problem- and emotion-focused coping strategies to deal with the challenges. They devised ways to reduce the smell of urine to reduce the stigma, rejection and isolation. While trying to cope, the women found themselves alone and isolated. Women either isolated themselves or were isolated by society, including by close relatives and their husbands. Their sex lives were no longer enjoyable, and generally, women felt a loss of their marital and sexual rights. Conclusion: Women with a fistula make adjustments in their lives to cope with the physical, social, psychological and sexual challenges. They use both problem- and emotion-focused coping to minimise their sense of isolation, as well as the rejection and stigma associated with fistula. These findings are essential for counselling patients, families and community members affected by a fistula. In similar contexts, health programmes should go beyond fistula closure and target communities and families to reduce the stigma and isolation faced by women with genital fistula