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Improving Quality of Life and Social Integration of Women with Obstetric Fistula

Abstract

Study Goals: The goal of the project is to improve access to treatment, quality of life and productivity of women suffering from obstetric fistula in developing countries through improved surgical care, psychosocial support, rehabilitation services, and assistance in social reintegration,

Rationale: Obstetric fistula (OF), which develops after a difficult childbirth leading to continuous urinary and fecal incontinence, is the most debilitating and devastating condition among all maternal morbidities.  Although it has been completely eradicated from the developed world during the early 1900s, millions of marginalized women in developing countries still suffer from obstetric fistula. Invariably these women are abandoned by their husbands and progressively ostracized by their communities.  The condition is preventable and surgical treatments are available, but a vast majority of women suffering from fistula do not have access to care. Johns Hopkins University, in collaboration with medical and national institutions in selected high fistula-prevalent countries, proposes to undertake a study to examine access to care, post-operative prognosis, improvements in quality of life, social integration, and rehabilitation of fistula patients.

Study Sites: Study Sites: The study will be implemented at nine selected hospitals in eight countries Bangladesh (Dhaka Medical College Hospital), Benin (Hospital Saint Jean de Dieu, Tanguieta), Ethiopia (Addis Ababa Fistula Hospital), Niger (National Hospital of Niamey and Zinder Fistula Center), Nigeria (Babbar Ruga Hospital) Mali (Point G Hospital), Sudan (Dr. Abbo’s National Fistula and Urogynaecology Center), Tanzania ( Ifkara Health Institute/Bugando Medical Center).

Methods: A prospective cohort study in which the subjects will be followed longitudinally for 12 months after surgical repairs. We will examine long-term prognosis and pre-post changes in quality of life after surgical repairs; identify familial, social and community enabling factors that assist women in social and economic rehabilitation; and assess the needs of emotional, psychological and economic supports. To develop appropriate strategies for prevention, we will examine social, economic and structural contexts, risk factors, care seeking behaviors and postpartum care during the index pregnancy.

Impact: “Dead women walking” is the label often reserved for the women suffering from obstetric fistula considering their abject quality of life, and the study results will help in the primary, secondary and tertiary prevention of obstetric fistula in developing countries. It is expected that the women will fully reintegrate into the society with full productive life when they receive appropriate care and supports.

Specific Aims

The overarching goal of this project is to improve the quality of life (QOL) of obstetric fistula patients through surgical treatment, psychosocial support, rehabilitation services, and assistance in social reintegration.  It is conservatively estimated that more than two million women are currently living with obstetric fistula, almost all of whom reside exclusively in Africa, Southeast Asia, and the Arab region (WHO 2006).  Although obstetric fistula is a principle cause of maternal morbidity and is considered the most debilitating and devastating birth-related condition, it received comparatively little attention so far because it is a condition suffered by the most marginalized women with the least visibility and voice.

The range of physical and psychological problems associated with obstetric fistula adversely affects the quality of women’s lives in numerous ways.  The constant leakage of urine and offensive smells can make it impossible for them to fulfill their familial roles as wife and mother. As a consequence, they are frequently abandoned by their husbands and progressively ostracized by their communities.  Social stigma adds additional suffering for women with fistula. Details about the complex and interrelated social, economic, and emotional consequences women experience following fistula development is still scarce.  Likewise, information about the impact of treatment and re-integration services on affected women’s health, quality of life, and social status is urgently needed.  Very few studies, for example, have systematically examined the outcomes of fistula repairs based on the grading of fistula complexity, extent of physical damage, duration of onset, and surgical skills.  Furthermore, most studies investigating the success of various surgical procedures have included only a short-term follow-up period, and, as a result, little is known about the long-term prognosis of fistula patients, changes in their QOL following repair, and ability to re-assimilate into their respective communities post-surgery.

In view of these noted research gaps and the lack of studies linking surgical prognosis and treatment to women’s long-term health and psychosocial outcomes, the specific aims of the project are:

1. To examine long-term prognosis of surgical treatments based on anatomical locations, complexity, presence of scarring, multiple organ involvements, duration of onset, severity, and size of fistula, and to develop a prognostic based classification system for obstetric fistula.

2.  To examine the changes in women’s quality of life (QOL) before and after surgical repair of obstetric fistula and to link these changes to women’s surgical outcomes (e.g., non-repairable and failed cases vs. successfully repaired cases). 

3.  To examine social vulnerability (isolation, marital dissolution, and desertion) and stigma for obstetric fistula, and its effects on care seeking behavior. 

4.  To identify familial and community enabling factors that facilitate women to re-integrate in to society after treatment.   

The results of the study will be instrumental for advocacy and for devising appropriate, cost effective, feasible programs and national strategies for treatment, prevention, and rehabilitation of fistula patients in developing countries. Currently there is a marked deficiency of published material on the success of already implemented re-integration strategies, and on women’s life conditions before and after fistula repair. Thus, the development of this type of model, based on women’s needs and  community contexts, would make a significant contribution to improving the quality of life for millions women suffering fistula.

 

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