Uganda, Kenya

This is a mixed-methods study in Uganda that seeks to identify predictors and characteristics of post-repair fistula breakdown and recurrence, post-repair incontinence and to identify feasible and acceptable intervention strategies for these predictors The prospective cohort study of women with successful vesicovaginal fistula repair at approximately 12 fistula repair centers and affiliated care sites in Uganda will be followed up through qualitative inquiry. 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. 

Participant recruitment and follow-up are currently underway. This study is expected to identify key predictors that can directly improve fistula repair, post-repair programs, and women’s outcomes, optimizing health and quality of life. Furthermore, the study will create a comprehensive longitudinal dataset capable of supporting broad inquiry into post-fistula repair health.

Ghana, Uganda, Kenya

The COPE (Cup for Obstetric fistula tertiary PrEvention) is a hybrid type I randomized crossover trial to assess the effectiveness and comparative effectiveness, acceptability, and cost of two models of an insertable vaginal cup for non-surgical management of obstetric fistula and explore the implementation context for these two intervention models among stakeholders. This study is taking place in Ghana and the aims of the study are to assess the effectiveness of an insertable vaginal cup to manage fistula urinary incontinence, examine user and implementer acceptability, and  quantify fistula management costs.

In Ghana, an estimated 1,350 women each year develop obstetric fistula, but the annual capacity for surgical repair is about 100 cases; given the substantial backlog of cases, women need an acceptable option for non-surgical management of vesico-vaginal fistula-related urinary incontinence that could temporarily alleviate symptoms and the study outcomes could provide evidence for if cups for menstrual management may be used pre- surgery, by those for whom surgery is not at option or has failed to fix the fistula as a means to improving their quality of lives.

Global

This is mixed methods study to characterize the global landscape of reintegration programming for female genital fistula and to understand reintegration programming orientation, barriers and facilitators to program implementation. The benefit of holistic reintegration programming adjunct to fistula surgery is acknowledged by stakeholders; however, the published and grey literature informing best practices for post-surgical reintegration programs and outcomes is sparse.

Our landscape assessment includes a quantitative survey among clinical and social service providers for fistula, building on an existing database of these providers maintained by UNFPA’s Campaign to End Fistula, followed by in-depth interviews with a subset of programs offering reintegration services to obtain a nuanced understanding of experiences and perspectives on developing and implementing reintegration services, multi-level barriers and facilitators to reintegration services following an implementation science framework,  women’s reception of services and outcomes, and recommendations for improving health and quality of life of women with fistula. This project will describe what programs provide fistula-related reintegration services, their scope, influences, achievements and limitations, and outcomes.

Uganda

This is a mixed-methods study that aims to robustly estimate the rate of stillbirth (primary) and other pregnancy outcomes (secondary) following fistula repair in Uganda among a retrospective cohort of 310 women with post-repair pregnancy at 6 fistula repair facilities, to explore pregnancy-related health and care experiences among women with varied pregnancy outcomes. It aims to explore fistula care providers' perspectives about women’s experiences of pregnancy, care, and outcomes in pregnancies following genital fistula repair and how best to intervene to improve outcomes. 

This is one step in a planned series of research activities to improve the evidence base on factors contributing to adverse outcomes following fistula repair. We ultimately seek to estimate risk factors of adverse post-repair outcomes and translate our findings into counseling and clinical care models for optimizing women’s health and wellbeing in this population. Overall, our research program is expected to result in higher physical and psychosocial quality of life in both the short and long term for the increasing number of women undergoing surgical repair of female genital fistula in Uganda and elsewhere. 

Kenya

This project seeks to contribute to the lack of evidence regarding post-repair services for women affected by genital fistula. In Western Kenya, which has a lifetime prevalence of fistula-related symptoms among women of reproductive age of 0.7%, several clinical care facilities are available that provide fistula repair, as well as several social service organizations, including Beyond Fistula. Mapping the reach of these organizations and understanding their impact has important policy implications. 

This project aims to measure change in economic status and women’s autonomy and household decision-making among women who participate in Beyond Fistula programming, and to assess the broader landscape of clinical and social service programming for female genital fistula repair in Western Kenya. This project will enroll 200 women who are participating in Beyond Fistula programming (100 prospective and 100 retrospective) for quantitative survey, 10-20 program leaders responsible for clinical and social service programming in the region for a mixed-methods survey, and approximately 20-30 women who have participated in a range of programs within the region for a short sociodemographic questionnaire plus in-depth interview. The research activities within the proposed research are anticipated to expand the extremely limited evidence base on reintegration programming for women with genital fistula for sharing results and identifying feasible, acceptable, and effective strategies to improve women’s quality of life and recovery processes.