Beyond Repair: Family and Community Reintegration after Obstetric Fistula Surgery

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DESCRIPTION (provided by applicant): Obstetric fistula is a debilitating birth injury that affects an estimated 2 to 3 million women, most in sub- Saharan Africa. Women with obstetric fistula suffer from severe physical injuries and devastating psychological effects due to constantly leaking urine and feces. The past decade has witnessed increasing efforts to scale up fistula services, however previous research on fistula repair outcomes have focused primarily on clinical outcomes without considering the success of the woman's reintegration into her family and community. An essential step toward understanding reintegration is to develop an appropriate measurement tool, as none currently exist. The aims of this study are to better understand the process of family and community reintegration post fistula surgery; to modify and pilot test a measurement tool to assess long term success of family and community reintegration among women post fistula surgery, and to assess the feasibility of long-term follow-up among this group utilizing mobile phone technology. Using in-depth individual interviews we will conduct formative research to understand the lived experience of women who have returned to their communities after fistula repair. This understanding will inform our use of focus groups to identify domains relevant to reintegration. We will then use these domains to modify a pre-existing measurement tool, and pilot test this tool among a cohort of 60 Ugandan women immediately following fistula surgery through 12 months post-surgery. The factor structure, reliability and validity of this measure will be established. Follow-up among the longitudinal sample will utilize mobile cellular technology; the success of this method of follow-up will be evaluated by our project interviewer and respondents. This is an early step towards developing a reliable and valid tool for measuring the success of family and community reintegration post-fistula surgery, and complements other programming to increase the number of surgeries. As more fistulas are repaired, it is essential to move beyond repair and to understand women's lived experiences and how we can enhance women's family and community reintegration post-surgery. The proposed research focuses on a neglected area, will accelerate the development of a new post-fistula repair measurement tool to follow re-integration, has important implications for developing evidence-based programming for a growing population of women with fistula repair, and will contribute to the knowledge base on follow-up of rural inhabitants via mobile technology. Furthermore, the fact that this is the first study of its kind to occur in Uganda, a country with a high prevalence of obstetric fistula, will help to discern the lived experiences of these women and their needs within this particular cultural and political context.