Browsing by Author "Obore, Susan"

Now showing 1 - 11 of 11
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    Beyond repair - family and community reintegration after obstetric fistula surgery: study protocol
    (Reprod Health, 2015-12-18) Byamugisha, Josaphat; Obore, Susan; Kakaire, Othman; Nalubwama, Hadija; Miller, Suellen
    Obstetric fistula is a debilitating birth injury that affects an estimated 2–3 million women globally, most in sub-Saharan Africa and Asia. The urinary and/or fecal incontinence associated with fistula affects women physically, psychologically and socioeconomically. Surgical management of fistula is available with clinical success rates ranging from 65–95 %. Previous research on fistula repair outcomes has focused primarily on clinical outcomes without considering the broader goal of successful reintegration into family and community. The objectives for this study are to understand the process of family and community reintegration post fistula surgery and develop a measurement tool to assess long-term success of post-surgical family and community reintegration.
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    Characteristics and Outcomes of Patients with Pelvic Organ Prolapse: an Analysis of Data from Mulago National Referral Hospital from 2007–2016
    (African Health Sciences, 2023-04-11) Byamugisha, Josaphat; Barageine, Justus; Kakaire, Othman; Nalubwama, Haddy; Obore, Susan; Mukasa, David Christopher; Mwanje, Haruna; Alia, Godfrey; El Ayadi, Alison
    Pelvic organ prolapse (POP) is associated with negative physical, social, psychological, and sexual experiences. There is paucity of data in low and middle income countries like Uganda. The purpose of this study was to describe clinical characteristics and outcomes of patients undergoing surgery for POP from 2007 to 2016. The study was conducted at Mulago National Referral Hospital from 2014 to 2016. We conducted a retrospective review of the urogynecology surgical records using a standardized medical record abstraction form. Data of 222 POP patients were abstracted and managed using REDCap. Analysis was performed using Stata statistical software, v14. The mean participant age and parity was 57 years and 7 respectively. Ninety four percent of participants presented with a mass protruding from the vagina, 38% with uterine prolapse and 32% with cystocoele. Anaemia and hypertension were common comorbidities. Women underwent a variety of surgery types, and 35% experienced persistent pain post-operatively. At hospital discharge, 83% had achieved either complete resolution or improvement in their condition. Measures encouraging presentation for care as soon as symptoms are experienced and reduction of total fertility rate will be beneficial. Patients with POP should be routinely screened for anaemia and hypertension.
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    Contraceptive Preferences and Adoption Following Female Genital Fistula Surgery in Uganda: A Mixed‑Methods Study
    (Reproductive Health, 2023-08-19) El Ayadi, Alison M.; Nalubwama, Hadija; Kakaire, Othman; Miller, Suellen; Barageine, Justus; Byamugisha, Josaphat; Obore, Susan; Harper, Cynthia C.
    Female genital fistula, largely caused by prolonged obstructed labour, is treated by surgical repair. Preventing pregnancy for a minimum period post-repair is recommended to ensure adequate healing and optimize post-repair outcomes. We examined contraceptive preferences and use among Ugandan fistula patients (n = 60) in the year following genital fistula surgery using mixed-methods. Sexual activity, contraceptive use and pregnancy status were recorded quarterly for 12 months after surgery. In-depth interviews among purposively selected participants (n = 30) explored intimate relationships, sexual experiences, reproductive intentions, and contraceptive use. Median participant age was 28 years and almost half (48%) were married or living with partners. Counselling was provided to 97% of participants on delaying sexual intercourse, but only 59% received counselling on contraception. Sexual activity was reported by 32% after 6 months and 50% after 12 months. Eighty-three percent reported not trying for pregnancy. Among sexually active participants, contraceptive use was low at baseline (36%) but increased to 73% at 12 months. Six (10%) women became pregnant including two within 3 months post-repair. Interview participants who desired children immediately were young, had fewer children, experienced stillbirth at fistula development, and felt pressure from partners. Women adopted contraception to fully recover from fistula surgery and avoid adverse outcomes. Others simply preferred to delay childbearing. Reasons cited for not adopting contraception included misconceptions related to their fertility and to contraceptive methods and insufficient or unclear healthcare provider advice on their preferred methods. A high proportion of patients were not counselled by healthcare providers on contraception. Provision of comprehensive patient-centred contraceptive counselling at the time of fistula surgery and beyond is important for patients to optimize healing from fistula and minimize recurrence, as well as to meet their own reproductive preferences.
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    Development and Pilot Test of a Multi‑Component Intervention to Support Women’s Recovery from Female Genital Fistula
    (Int Urogynecol J, 2024-06-24) Barageine,Justus K.; Nalubwama, Hadija; Obore, Susan; Mirembe, Esther; El Ayadi, Alison M.
    We evaluated a pilot multi-component reintegration intervention to improve women’s physical and psychosocial quality of life after genital fistula surgery. 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. 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. 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.
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    Feasibility and Acceptability of Mobile Phone Data Collection for Longitudinal follow-up among Patients Treated for Obstetric Fistula in Uganda
    (Health care for women international, 2020-10-08) El Ayadi, Alison M.; Nalubwama, Hadija; Barageine, Justus K.; Obore, Susan; Kakaire, Othman; Mwanje, Haruna; Byamugisha, Josaphat
    Rapid dissemination of mobile technology provides substantial opportunity for overcoming challenges reaching rural and marginalized populations. We assessed feasibility and acceptability of longitudinal mobile data capture among women undergoing fistula surgery in Uganda (n = 60) in 2014–2015. Participants were followed for 12 months following surgery, with data captured quarterly, followed by interviews at 12 months. Participant retention was high (97%). Most respondents reported no difficulty with mobile data capture (range 93%–100%), and preferred mobile interview (88%–100%). Mobile data capture saved 1000 person-hours of transit and organizational time. Phone-based mobile data collection provided social support. Our results support this method for longitudinal studies among geographically and socially marginalized populations.
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    Identifying Opportunities for Prevention of Adverse Outcomes Following Female Genital Fistula Repair: Protocol for a Mixed‑Methods Study in Uganda
    (Reproductive Health, 2025) El Ayadi, Alison M.; Obore, Susan; Kirya, Fred; Nalubwama, Hadija; Getahun, Monica; Eyul, Patrick; Twine, Robert; Andrew, Erin V. W.; Barageine, Justus K.
    Female genital fistula is a traumatic debilitating injury, frequently caused by prolonged obstructed labor, affecting between 500,000-2 million women in lower-resource settings. Vesicovaginal fistula causes urinary incontinence, and other morbidity may occur during fistula development. Women with fistula are stigmatized, limit social and economic engagement, and experience psychiatric morbidity. Improved surgical access has reduced fistula consequences yet post-repair risks impacting quality of life and well-being include fistula repair breakdown or recurrence and ongoing or changing urine leakage or incontinence. Limited evidence on risk factors contributing to adverse outcomes hinders interventions to mitigate adverse events. This study aims to quantify these adverse risks and inform clinical and counseling interventions to optimize women’s health and quality of life following fistula repair through: identifying predictors and characteristics of post-repair fistula breakdown and recurrence (Objective 1) and post-repair incontinence (Objective 2), and to identify feasible and acceptable intervention strategies (Objective 3). This mixed-methods study incorporates a prospective cohort of women with successful vesicovaginal fistula repair at approximately 12 fistula repair centers in Uganda (Objectives 1-2) followed by qualitative inquiry among key stakeholders (Objective 3). Cohort participants will have a baseline visit at the time of surgery followed by data collection at 2 weeks, 6 weeks, 3 months and quarterly thereafter for 3 years. Primary predictors to be evaluated include patient-related factors, fistula-related factors, fistula repair-related factors, and post-repair behaviors and exposures, collected via structured questionnaire at all data collection points. Clinical exams will be conducted at baseline, 2 weeks post-surgery, and for outcome confirmation at symptom development. Primary outcomes are fistula repair breakdown or fistula recurrence and post-repair incontinence. In-depth interviews will be conducted with cohort participants (n ~ 40) and other key stakeholders (~ 40 including family, peers, community members and clinical/social service providers) to inform feasibility and acceptability of recommendations.
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    Perceived Causes of Obstetric Fistula and Predictors of Treatment Seeking among Ugandan Women: Insights from Qualitative Research
    (African journal of reproductive health, 2020-07-24) Nalubwama, Hadija; El Ayadi, Alison M.; Barageine, Justus K.; Byamugisha, Josaphat; Kakaire, Othman; Obore, Susan; Mwanje, Haruna; Miller, Suellen
    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.
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    Rehabilitation and Reintegration Programming adjunct to Female Genital Fistula Surgery: a scoping review protocol
    (BMJ open, 2019-09-25) El Ayadi,Alison M; Obore, Susan; Byamugisha, Josaphat; Barageine, Justus K
    Female genital fistula is a debilitating traumatic injury, largely birth-associated, globally affecting up to 2 million women, mostly in sub-Saharan Africa. Fistula has significant physical, psychological and economic consequences. Women often face challenges in reintegrating and resuming prior roles despite successful surgery. Synthesising the evidence on services adjunct to fistula surgery and their outcomes is important for developing the evidence base for best practices and identifying research priorities. This scoping review seeks to examine the range of rehabilitation and reintegration services provided as adjunct to genital fistula surgery, map the existing programming and outcomes, and identify areas for additional research.
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    Rehabilitation and Reintegration Programming adjunct to Female Genital Fistula Surgery: A systematic scoping review
    (International Journal of Gynecology & Obstetrics, 2020-01-13) El Ayadi, Alison M.; Obore, Susan; Byamugisha, Josaphat; Barageine, Justus K.
    Female genital fistula is associated with significant physical, psychological, and economic consequences; however, a knowledge and practice gap exists around services adjunct to fistula surgery. To examine rehabilitation and reintegration services provided adjunct to genital fistula surgery, map existing programming and outcomes, and identify areas for additional research. We searched the published and grey literature from January 2000 to June 2019. Two reviewers screened articles and extracted data using standardized methods. Research and programmatic articles describing service provision in addition to female genital fistula surgery were included. Of 3047 published articles and 2623 unpublished documents identified, 26 and 55, respectively, were analyzed. Programming identified included combinations of health education, physical therapy, social support, psychosocial counseling, and economic empowerment, largely in sub-Saharan Africa. Improvements were noted in physical and psychosocial health. Existing literature supports holistic fistula care through adjunct reintegration programming. Improving the evidence base requires implementing robust study designs, increasing reporting detail, and standardizing outcomes across studies. Increased financing for holistic fistula care is critical for developing and supporting programming to ensure positive outcomes.
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    The Social, Economic, Emotional, and Physical Experiences Of Caregivers for Women with Female Genital Fistula in Uganda: A Qualitative Study
    (Global public health, 2023-09-06) El Ayadi, Alison M.; Nalubwama, Hadija; Semere, Wagahta; Barageine, Justus K.; Obore, Susan; Lucas, Ruby; Byamugisha, Josaphat
    This study aimed to explore the firsthand experiences of informal primary caregivers of women with female genital fistula in Uganda. Caregivers that accompanied women for surgery at Mulago National Teaching and Referral Hospital were recruited between January and September 2015. Caregivers participated in in-depth interviews and focus groups. Data were analysed thematically and informed adaptation of a conceptual framework. Of 43 caregivers, 84% were female, 95% family members, and most married and formally employed. Caregivers engaged in myriad personal care and household responsibilities, and described being on call for an average of 22.5 h per day. Four overlapping themes emerged highlighting social, economic, emotional, and physical experiences/consequences. The caregiving experience was informed by specific caregiver circumstances (e.g. personal characteristics, care needs of their patient) and dynamic stressors/supports within the caregiver’s social context. These results demonstrate that caregivers’ lived social, economic, emotional, and physical experiences and consequences are influenced by both social factors and individual characteristics of both the caregiver and their patient. This study may inform programmes and policies that increase caregiving supports while mitigating caregiving stressors to enhance the caregiving experience, and ultimately ensure its feasibility, particularly in settings with constrained resources.
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    Trajectories of Women’s Physical and Psychosocial Health following Obstetric Fistula Repair in Uganda: A Longitudinal Study
    (Tropical Medicine & International Health, 2018-10-29) El Ayadi, Alison M.; Barageine, Justus; Kakaire, Othman; Obore, Susan; Byamugisha, Josaphat; Nalubwama, Hadija; Mwanje, Haruna; Tripathi, Vandana
    To explore trajectories of physical and psychosocial health, and their interrelationship, among women completing fistula repair in Uganda for 1 year post-surgery. We 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. Across 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). Our 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.