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)

Reducing barriers to accessing fistula repair: Implementation research in Uganda

The Population Council, in collaboration with Fistula Care Plus and EngenderHealth, conducted implementation research to understand whether a comprehensive information, screening, and referral intervention reduces transportation, communication, and financial barriers to accessing fistula screening, diagnosis, and treatment in Uganda. Following a baseline assessment, researchers implemented a multi-pronged intervention utilizing a mobile hotline, transport voucher, and mass media tools to increase community awareness. This brief provides key messages and recommendations for overcoming barriers hindering access to fistula care services. Health systems and external stakeholder support are essential for sustaining trends

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

Trajectories of women's physical and psychosocial health following obstetric fistula repair in Uganda: a longitudinal study.

ObjectivesTo explore trajectories of physical and psychosocial health, and their interrelationship, among women completing fistula repair in Uganda for 1 year post-surgery.MethodsWe recruited a 60-woman longitudinal cohort at surgical hospitalisation from Mulago Hospital in Kampala Uganda (Dec 2014-June 2015) and followed them for 1 year. We collected survey data on physical and psychosocial health at surgery and at 3, 6, 9 and 12 months via mobile phone. Fistula characteristics were abstracted from medical records. All participants provided written informed consent. We present univariate analysis and linear regression results.ResultsAcross post-surgical follow-up, most women reported improvements in physical and psychosocial health, largely within the first 6 months. By 12 months, urinary incontinence had declined from 98% to 33% and general weakness from 33% to 17%, while excellent to good general health rose from 0% to 60%. Reintegration, self-esteem and quality of life all increased through 6 months and remained stable thereafter. Reported stigma reduced, yet some negative self-perception remained at 12 months (mean 17.8). Psychosocial health was significantly impacted by the report of physical symptoms; at 12 months, physical symptoms were associated with a 21.9 lower mean reintegration score (95% CI -30.1, -12.4).ConclusionsOur longitudinal cohort experienced dramatic improvements in physical and psychosocial health after surgery. Continuing fistula-related symptoms and the substantial differences in psychosocial health by physical symptoms support additional intervention to support women's recovery or more targeted psychosocial support and reintegration services to ensure that those coping with physical or psychosocial challenges are appropriately supported

Perceived Causes of Obstetric Fistula and Predictors of Treatment Seeking among Ugandan Women: Insights from Qualitative Research

Many obstetric fistula patients remain untreated or present late to treatment despite increasing surgical availability in Uganda. We explored women‘s perceptions of the cause of their obstetric fistula and their treatment seeking behaviours, including barriers and facilitators to timely care access. In-depth interviews and focus group discussions were conducted from June–August 2014 among 33 women treated for obstetric fistula at Mulago Hospital, Kampala. Data were analysed to describe dimensions and commonalities of themes identified under perceived causes and treatment seeking experiences, and their intersection. Perceived obstetric fistula causes included delays in deciding on hospital delivery, lengthy labour, injury caused by the baby, health worker incompetence, and traditional beliefs. Treatment seeking timing varied. Early treatment seeking was facilitated by awareness of treatment availability through referral, the media, community members, and support by partners and children. Barriers to early treatment seeking included inadequate financial and social support, erroneous perceptions about fistula causes and curability, incorrect diagnoses, and delayed or lack of care at health facilities. Our study supports broad educational and awareness activities, facilitation of social and financial support for accessing care, and improving the quality of emergency obstetric care and fistula treatment surgical capacity to reduce women‘s suffering. Keywords: Obstetric fistula, perceived causes, treatment seeking, maternal morbidity, UgandaDe nombreux patients atteints de fistule obstétricale restent non traités ou se présentent tardivement au traitement malgré une disponibilité chirurgicale croissante en Ouganda. Nous avons exploré la perception qu'ont les femmes de la cause de leur fistule obstétricale et de leurs comportements de recherche de traitement, y compris les obstacles et les facilitateurs pour un accès rapide aux soins. Des entretiens approfondis et des discussions de groupe ont été menés de juin à août 2014 auprès de 33 femmes traitées pour fistule obstétricale à l'hôpital de Mulago, Kampala. Les données ont été analysées pour décrire les dimensions et les points communs des thèmes identifiés sous les causes perçues et les expériences de recherche de traitement, et leur intersection. Les causes perçues de la fistule obstétricale comprenaient des retards dans les décisions d'accouchement à l'hôpital, un travail prolongé, des blessures causées par le bébé, l'incompétence des agents de santé et les croyances traditionnelles. Le calendrier de recherche du traitement variait. La recherche précoce d'un traitement a été facilitée par la sensibilisation à la disponibilité du traitement grâce à l'aiguillage, aux médias, aux membres de la communauté et au soutien des partenaires et des enfants. Les obstacles à la recherche d'un traitement précoce comprenaient un soutien financier et social inadéquat, des perceptions erronées sur les causes et la curabilité des fistules, des diagnostics incorrects et un retard ou un manque de soins dans les établissements de santé. Notre étude soutient de vastes activités d'éducation et de sensibilisation, la facilitation du soutien social et financier pour l'accès aux soins et l'amélioration de la qualité des soins obstétricaux d'urgence et du traitement chirurgical de la fistule pour réduire la souffrance des femmes.  Mots-clés: Fistule obstétricale, causes perçues, recherche de traitement, morbidité maternelle, Ougand

Risk factors for obstructed labour in Eastern Uganda: A case control study

Introduction: Obstructed labour (OL) is an important clinical and public health problem because of the associated maternal and perinatal morbidity and mortality. Risk factors for OL and its associated obstetric squeal are usually context specific. No epidemiological study has documented the risk factors for OL in Eastern Uganda. This study was conducted to identify the risk factors for OL in Mbale Hospital. Objective: To identify the risk factors for OL in Mbale Regional Referral and Teaching Hospital, Eastern Uganda. Methods: We conducted a case control study with 270 cases of women with OL and 270 controls of women without OL. We consecutively enrolled eligible cases between July 2018 and February 2019. For each case, we randomly selected one eligible control admitted in the same 24-hour period. Data was collected using face-to-face interviews and a review of patient notes. Logistic regression was used to identify the risk factors for OL. Results: The risk factors for OL were, being a referral from a lower health facility (AOR 6.80, 95% CI: 4.20–11.00), prime parity (AOR 2.15 95% CI: 1.26–3.66) and use of herbal medicines in active labour (AOR 2.72 95% CI: 1.49–4.96). Married participants (AOR 0.59 95% CI: 0.35–0.97) with a delivery plan (AOR 0.56 95% CI: 0.35–0.90) and educated partners (AOR 0.57 95% CI: 0.33–0.98) were less likely to have OL. In the adjusted analysis, there was no association between four or more ANC visits and OL, adjusted odds ratio [(AOR) 0.96 95% CI: 0.57–1.63)]. Conclusions: Prime parity, use of herbal medicines in labour and being a referral from a lower health facility were identified as risk factors. Being married with a delivery plan and an educated partner were protective of OL. Increased frequency of ANC attendance was not protective against obstructed labour.publishedVersio

Effect of pre-operative bicarbonate infusion on maternal and perinatal outcomes among women with obstructed labour in Mbale hospital: A double blind randomized controlled trial

Introduction Oral bicarbonate solution is known to improve both maternal and perinatal outcomes among women with abnormal labour (dystocia). Its effectiveness and safety among women with obstructed labour is not known. Objective To determine the effect and safety of a single-dose preoperative infusion of sodium bicarbonate on maternal and fetal blood lactate and clinical outcomes among women with obstructed labour (OL) in Mbale hospital. Methods We conducted a double blind, randomised controlled trial from July 2018 to September 2019. The participants were women with OL at term (≥37 weeks gestation), carrying a singleton pregnancy with no other obstetric emergency, medical comorbidity or laboratory derangements. Intervention A total of 477 women with OL were randomized to receive 50ml of 8.4% sodium bicarbonate (238 women) or 50 mL of 0.9% sodium chloride (239 women). In both the intervention and controls arms, each participant was preoperatively given a single dose intravenous bolus. Every participant received 1.5 L of normal saline in one hour as part of standard preoperative care. Outcome measures Our primary outcome was the mean difference in maternal venous blood lactate at one hour between the two arms. The secondary outcomes were umbilical cord blood lactate levels at birth, neonatal sepsis and early neonatal death upto 7 days postnatal, as well as the side effects of sodium bicarbonate, primary postpartum hemorrhage, maternal sepsis and mortality at 14 days postpartum. Results The median maternal venous lactate was 6.4 (IQR 3.3–12.3) in the intervention and 7.5 (IQR 4.0–15.8) in the control group, with a statistically non-significant median difference of 1.2 mmol/L; p-value = 0.087. Vargha and Delaney effect size was 0.46 (95% CI 0.40–0.51) implying very little if any effect at all. Conclusion The 4.2g of preoperative intravenous sodium bicarbonate was safe but made little or no difference on blood lactate levels.publishedVersio

Development and Pilot Test of a Multi-Component Intervention to Support Womens Recovery from Female Genital Fistula.

INTRODUCTION AND HYPOTHESIS: We evaluated a pilot multi-component reintegration intervention to improve womens physical and psychosocial quality of life after genital fistula surgery. METHODS: Twelve women undergoing fistula repair at Mulago Specialized Women and Neonatal Hospital (Kampala, Uganda) anticipated in a 2-week multi-component intervention including health education, psychosocial therapy, physiotherapy, and economic investment. We assessed feasibility through recruitment, retention, and adherence, acceptability through intervention satisfaction, and preliminary effectiveness through reintegration, mental health, physical health, and economic status. We collected quantitative data at enrollment, 6 weeks, 3 months, and 6 months. We conducted in-depth interviews with six participants. Quantitative data are presented descriptively, and qualitative data analyzed thematically. RESULTS: Participants had a median age of 34.5 years (25.5-38.0), 50% were married/partnered, 42% were separated, 50$ had completed less than primary education, and 67% were unemployed. Mean number of sessions received was 12 for health education (range 5-15), 8 for counseling (range 8-9), and 6 for physiotherapy (range 4-8). Feasibility was demonstrated by study acceptance among all those eligible (100%); comfort with study measures, data collection frequency and approach; and procedural fidelity. Acceptability was high; all participants reported being very satisfied with the intervention and each of the components. Participant narratives echoed quantitative findings and contributed nuanced perspectives to understanding approach and content. CONCLUSIONS: Our results suggest that the intervention and associated research were both feasible and acceptable, and suggested certain modifications to the intervention protocol to reduce participant burden. Further research to determine the effectiveness of the intervention above and beyond surgery alone with regard to the health and well-being of women with fistulas is warranted

“...Our support is not enough”: a qualitative analysis of recommendations from informal caregivers of women with female genital fistula in Uganda

Informal caregivers remain critical across the care continuum for complex and stigmatized conditions including female genital fistula, particularly in lower-resource settings burdened by underfunded health systems and workforce shortages. These caregivers often provide significant nonmedical support in both community and facility settings, without pay. Despite their unique insight into the lived experiences of their patients, few studies center the perspectives of informal caregivers. We asked informal caregivers of women seeking surgical treatment of fistula in Kampala Uganda for their ideas about what would improve the recovery and reintegration experiences of their patients. Economic empowerment and community capacity building emerged as primary themes among their responses, and they perceived opportunities for clinical medicine and global health to strengthen strategies for fistula prevention through reintegration. Informal caregivers urged simultaneous investment in women's economic status and community capacity to build fistula-related awareness, knowledge, and skills to improve inclusion of both fistula patients and their informal caregivers