Creating an Enabling Environment for Fistula Prevention and Treatment in Uganda
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UGANDA Creating an Enabling Environment for Fistula Prevention and Treatment in Uganda WHAT IS FISTULA? Obstetric Fistula in Uganda Obstetric fistula is a childbirth According to the 2011 Demographic and Health Survey (DHS), 438 women die of birth-related causes for every 100,000 live births in Uganda, and for injury, usually occurring when every woman who dies, six survive with chronic and debilitating ill health a woman is in labor too long (UBOS & ICF International, 2012). Obstetric fistula, a devastating and or when delivery is obstructed, frequent outcome of prolonged or unattended labor, is an example of this and she has no access to a chronic ill health and a significant public health problem in Uganda. Although cesarean section. She endures detailed data about obstetric fistula in Uganda are limited, the 2011 DHS estimated that 2% of Ugandan women aged 15–49 had experienced the internal injuries that leave her condition (UBOS & ICF International, 2012). incontinent, trickling urine Obstetric fistula occurs when there has been a gap in maternal health care, and sometimes feces through preventive services, or community response. Addressing these gaps requires her vagina. a concentrated and coordinated effort at the national and local levels (WHO, 2006). Surgeons, community leaders, hospital administrators, health care providers, nongovernmental organizations (NGOs), and women needing Fistula Care works to prevent services are distinct groups with their own needs. Organizing these groups fistula from occurring, treats and requires leadership, and the Ministry of Health (MOH) is often best placed cares for women with fistula, to provide centralized coordination among the various players to ensure that quality services are available. and assists in their rehabilitation and reintegration. For more Background information about fistula and The Ugandan MOH plays a critical role in ensuring equitable access to health the Fistula Care project, visit care and stewardship for health resources. As part of the country’s maternal www.fistulacare.org. health strategy, the MOH plans for service delivery and integration to address both prevention and treatment. Through the leadership of the MOH, standards, policies, and guidelines are applied within the decentralized health system. The MOH’s Clinical Services Department (MOH-CS) has been working on obstetric fistula for several decades. In the 1990s, fistula surgeons from developed countries provided fistula repair surgery mainly through missionary hospitals, offering committed Ugandan surgeons a chance to work with international surgeons and enhance their skills. (One of those trained Ugandan surgeons is now the Commissioner of Clinical Services.) Assessment reports have identified financial obstacles, limited access to services, inadequate antenatal and delivery care, and a shortage of trained service providers as barriers to fistula services in Uganda (Karugaba, 2003; Women’s Dignity Project & EngenderHealth, 2007). To address these, the www.fistulacare.org MOH has worked to build a supportive environment for fistula prevention, treatment, and reintegration. A key actor in building that • Development partners, including • Integrating fistula services into the environment has been the Fistula the Fistula Care project Ugandan health system Technical Working Group (FTWG), • Representatives from civil society, • Establishing standards, guidelines, which was established by the MOH- such as TERREWODDE and and protocols to guide services CS in 2003, under the leadership of Women’s Dignity (both of which Dr. Jacinto Amandua. Its goals are implement reintegration activities Building an Information Base to ensure equitable access to health for women affected by fistula) Without sufficient and reliable data, care for women with fistula, promote • NGOs implementing fistula health care managers can neither prevention strategies, maximize the prevention, treatment, or estimate the scope of obstetric efficient use of resources, eliminate reintegration activities in Uganda fistula nor effectively and efficiently plan and manage fistula services. In duplication of effort, and foster a The Fistula Partnership Forum, a Uganda, detailed information about community of providers. subgroup of the FTWG, was estab- the prevalence of obstetric fistula The FTWG’s main function is lished by the United Nations Popula- and about fistula services has been to coordinate stakeholder activities tion Fund (UNFPA), the African inadequate (Karugaba, 2003). The in fistula prevention, treatment, and Medical and Research Foundation MOH and the FTWG have taken steps reintegration. It works to improve (AMREF), and Fistula Care in 2009, to build a solid information base for data about obstetric fistula in Uganda; in consultation with the MOH. The obstetric fistula. plan for service delivery; integrate group’s goals are to harmonize and fistula prevention, treatment, and strengthen efforts among development DHS Data on Fistula reintegration services into maternal partners, leverage resources for fistula The DHS began collecting data on health care within the Ugandan health services in Uganda, and reduce obstetric fistula several years ago; the system; and provide a forum for duplication of effort. 2004 and 2005 surveys conducted stakeholders. Before the group was This brief describes three important in Ethiopia, Malawi, and Rwanda established, there was no national achievements of the Uganda MOH included questions on the condition oversight or coordination for fistula and the FTWG: (Johnson & Peterman, 2008). Data prevention and treatment in Uganda. • Building an information base collection about fistula in Uganda Members of the FTWG include: for obstetric fistula, to better began in 2006 (Johnson & Peterman, • Officials from MOH-CS and the plan for and manage prevention, 2008), but the findings were limited MOH’s reproductive health unit treatment, and reintegration and needed to be supplemented with • National fistula surgeons services qualitative research. In collaboration with the MOH and the FTWG, the Fistula Partnership Forum worked with the DHS and the Uganda Bureau of Statistics to increase the number of fistula questions in the Uganda DHS from one to the following three: 1. Sometimes a woman can have a problem of constant leakage of urine or stool from her vagina during the day and night. This problem usually occurs after a difficult childbirth, but may also occur after a sexual assault or other pelvic surgery. Have you ever experienced constant leakage of urine or stool from your vagina during the day and night? 2. Have you sought treatment for this condition? A nurse providing preoperative counselling to an elderly fistula client. 3. Why have you not sought treatment? 2 Creating an Enabling Environment for Fistula Prevention and Treatment in Uganda improve the quality of service delivery. When developing the registration form and the client card, an FTWG subcommittee reviewed various resources currently being used in Uganda and other countries. Members of the FTWG are using the registration form and the quarterly data collection tool; the client card is being printed and will be distributed for use in 2013. Mapping Fistula Services During FTWG meetings, it became clear that the MOH and other stakeholders lacked information about key players and where they were working. Therefore, the MOH Members of the Fistula Technical Working Group, after a meeting discussing the and Fistula Care worked with a Uganda national fistula strategy geographic information system (GIS) specialist from the U.S. Agency for The 2011 Uganda DHS (UBOS & • A fistula registration form to be International Development (USAID) ICF International, 2012) revealed used at all facilities providing to develop two maps for Uganda: that 2%of women of reproductive age fistula treatment services • One showed the location of had experienced leakage of urine or • A fistula client card to give to existing fistula treatment facilities stool from the vagina after childbirth. each client who seeks fistula and the competencies of surgeons Among women who reported leakage, treatment services (In the future, at those locations. 62% had sought treatment, 12% felt a woman will present the card • The other indicated where embarrassed and did not seek when accessing maternal health reintegration activities and treatment, 9% did not know where services, such as antenatal care, other services are provided by to go for treatment, 7% did not know to help ensure that she receives development partners. that fistula can be repaired, and 3% appropriate care, including These maps have been disseminated felt that treatment was too expensive. cesarean delivery.) widely in Uganda, especially among The FTWG intends to analyze • A quarterly data collection tool FTWG members. In 2010, a the DHS data further to identify for service delivery sites, adapted presentation about the maps was appropriate interventions in the from a model developed by Fistula given at the conference of the various regions. Data from the Care (2008a) International Society of Obstetric findings will help the FTWG estimate These tools can be used to assess Fistula Surgeons (Meier, 2010). the fistula burden and better how services are being used, to The maps have enabled the MOH- understand the behavior of women modify services as needed, and to CS to improve coordination of fistula with fistula by region and district. Service Delivery Information “The [FTWG] provides a platform for the Once fistula services