Volume 94, Issue 3 , Pages 254-261, September 2006
Eliminating obstetric fistula: Progress in partnerships
Article Outline
- Abstract
- 1. Introduction
- 2. A neglected condition
- 3. Bringing a neglected condition to light: the Campaign to End Fistula
- 4. Early progress in the Campaign
- 5. Moving towards elimination
- References
- Copyright
Abstract
Obstetric fistula persists in the developing world due to poor access to obstetric care. It has been overlooked in the past, as the women suffering from fistula often live on the fringe of society due to their poverty and the stigma surrounding the condition. A global Campaign to End Fistula is bringing a variety of actors together to raise awareness and support to prevent fistula and provide comprehensive treatment for women living with fistula. This paper describes the strategies and progress of the campaign since it began in 2003.
Keywords: Obstetric fistula, Vesico-vaginal fistula, Recto-vaginal fistula, Maternal morbidity, Campaign to End Fistula
1. Introduction
Obstetric fistula is a condition rarely seen in the industrialized world. Regrettably, it persists in parts of the developing world where obstetric care is either unavailable, inaccessible, underutilized or of low quality — places where maternal mortality is also unacceptably high. Obstetric fistula tends to affect marginalized women who have the least access to obstetric care. The medical and social consequences of the condition further isolate them from society. Stigma, shame and misperceptions surrounding the condition prevented women from coming forward in the past, particularly when there was no hope for a cure. Despite large numbers of women suffering in silence, fistula has been noticeably missing from international and national development and health agendas. Only recently have global and national organizations combined efforts to strengthen prevention and treatment of obstetric fistula towards its eventual elimination.
2. A neglected condition
The vast majority of genital fistulas in the world are caused by prolonged, obstructed labor. Obstructed labor is estimated to occur in approximately 4.6% of pregnancies and cause 8% of maternal deaths globally [1]. Fistulas of obstetric origin likely affect a significant number of women in areas where maternal mortality is high, such as sub-Saharan Africa and Asia, where approximately 95% of maternal deaths occur [2]. Adequate population-based measurements of prevalence and incidence are lacking unfortunately, reflecting the historic neglect of this condition. Estimates undertaken by the World Health Organization found a potential two million women worldwide suffering from the condition, with an annual incidence of 50,000 to 100,000 new cases [3]. Recent estimates from 2000 data indicate an annual incidence of approximately 73,000 cases [4]. Experts in fistula surgery in Africa further suggest that the incidence ratio may be as high as 2 to 5 per 1000 women surviving delivery in areas where emergency obstetric services are not available [5]. Based on information from facility-based studies and surveys among selected populations, some countries have attempted to assess the national prevalence. For example, Bangladesh estimates that 70,000 women live with fistula and Nigerian estimates vary widely from 400,000 to 1 million. However, these data must be viewed with caution until more accurate estimations become available.
Obstetric fistula and other sequelae caused by unrelieved prolonged, obstructed labor have been described as the ‘obstructed labor injury complex’ [6]. The fistula results from tissue necrosis caused by the fetal head impacting against the pelvic tissues; however, the trauma is often not limited to the fistula. Arrowsmith et al. suggest a wide range of post-delivery sequelae from prolonged, obstructed labor including total urethral loss, stress incontinence, hydroureteronephrosis, renal failure, rectal atresia, anal sphincter incompetence, cervical destruction, amenorrhea, pelvic inflammatory disease, secondary infertility, vaginal stenosis, osteitis pubis, and foot-drop [6]. Recently, attention has also been drawn to fistula caused by violent sexual assault, sometimes with foreign objects, referred to as traumatic gynecological fistula, which may be prevalent in certain contexts, particularly conflict situations [7].
Many smaller fistulas close without surgery, through continuous bladder drainage, although typically only if the patient presents within three months of delivery [8]. Surgical techniques for closing vesico-vaginal fistula were first described by J. Marion Sims in the mid-1800s in the United States. These techniques, further developed by a number of care-givers working in Africa and Asia, entail surgical closure of the fistula, sometimes with the use of tissue grafts, followed by a period of continuous bladder drainage, usually for two weeks. Due to the varying nature of the injury, each fistula is unique and requires a surgeon with skilled hands who is able to improvise on the spot [9]. Due to their social and economic circumstances, many women presenting with fistula are in general poor health. Prior to surgery, therefore, appropriate evaluation and treatment is needed for conditions such as anemia and malnutrition and for infections such as helminths and malaria in endemic areas. Despite the complexity of fistula treatment, quality care can be provided in low resource settings, as proven by treatment centers in Nigeria and Ethiopia.
Special care is needed to heal not only the physical injuries, but also to mend the social and psychological trauma associated with obstetric fistula. The smell of urine and feces that surrounds these women along with strong community misperceptions often results in familial and community abandonment and ostracism. The psychological consequences of fistula have as yet not been fully explored, but may be severe, as evidenced by a recent study in Bangladesh [10]. Accordingly, comprehensive treatment and rehabilitation necessarily includes mental health services, but reflection is required on what can be provided in low resource settings. Additionally, health education for women and their families is critical to prevent recurrence of the fistula in subsequent pregnancies. Fistula patients' long postoperative period also provides an opportunity to improve women's socio-economic status through literacy programs and skills training which can help them upon their return to society (Fig. 1).
Fig. 1.
One young patient consoles another at the Fistula Repair Centre at Dhaka Medical Hospital, Bangladesh (Photo credit: GMB Akash/Panos Pictures).
3. Bringing a neglected condition to light: the Campaign to End Fistula
Despite a number of individuals and institutions across Africa and Asia having dedicated themselves to providing care for women with obstetric fistula, no concerted effort brought obstetric fistula to global consciousness until recently. International and national partners now are combining efforts to bring the long-neglected condition to light through the Campaign to End Fistula. The Campaign is devoted to galvanizing commitment and resources for the elimination of obstetric fistula as well as drawing attention to pernicious gaps in maternal health services — particularly for the poor — and to gender inequities that limit women's prospects and autonomy.
Inspiration for the Campaign came from the Addis Ababa Fistula Hospital — which has been providing holistic treatment for women suffering from fistula for over thirty years. The Fistula Hospital's success has shown that it is possible to bring care to these women, even in the most difficult environments. Consequently, the United Nations Population Fund (UNFPA) brought together potential partners in London in 2001 to launch an initiative focused on addressing obstetric fistula. The meeting identified the actions needed to spark a global movement and involved the Addis Ababa Fistula Hospital, Columbia University's Averting Maternal Death and Disability Program (AMDD), the International Federation of Gynecology and Obstetrics (FIGO), and the World Health Organization (WHO) as well as UNFPA.
The first step in developing the global Campaign was to rapidly gather more data in countries where high prevalence was suspected. UNFPA and EngenderHealth carried out ground-breaking rapid needs assessments in nine countries in sub-Saharan Africa; similar studies were conducted in Kenya and Tanzania. Women living with fistula were found to be, for the most part, primiparous, illiterate, young and poor. Poverty, inadequate health systems, and sociocultural conditions all had served as barriers to accessing preventive obstetric services. Although some level of treatment services was being provided in most countries, difficult conditions and limited resources made availability sporadic and all too often, these circumstances were compounded by a lack of awareness among policy makers and government officials [11], [12].
The Campaign to End Fistula, launched by UNFPA and shaped by the assessment findings and expertise from partners such as the Addis Ababa Fistula Hospital, was set in motion in 2003 as initial countries began to develop national plans to eliminate the condition. An official international partnership, the Obstetric Fistula Working Group (OFWG), was formed with the purpose of ensuring global coordination and collaboration of efforts to eliminate obstetric fistula. The OFWG also raises awareness about obstetric fistula in the context of improving maternal and neonatal health and has recently become a member of the newly formed global Partnership for Maternal, Newborn and Child Health. One key area for the group has been to establish consensus on strategies and technical inputs to the Campaign. The working group has initiated and helped to guide the development of the manual Obstetric Fistula: Guiding principles for clinical management and programme development, spearheaded by WHO and supported by AMDD, which is due to be published in 2006.
4. Early progress in the Campaign
Although the Campaign to End Fistula is still in its initial phase, it has already grown to include more than 30 countries in sub-Saharan Africa, South Asia and the Arab World, and continues to grow. Each country typically follows a three-phased structure: rapid national needs assessment, national strategy planning and, finally, implementation of the strategy. More than twenty countries had completed a rapid needs assessment by mid-year in 2005, and over ten countries were moving forward on their national strategies.
National strategies are centered on three strategic interventions at country level: preventing new cases, providing treatment for women suffering from fistula and supporting women in their return to society after surgery. Prevention efforts focus on ensuring access to comprehensive maternal health services, including family planning, skilled birth attendance and emergency obstetric care as well as mobilizing policymakers, communities and individuals around maternal health. To increase access to treatment, there are initiatives to train health providers, strengthen fistula treatment services and ensure that services are affordable for the patients. In tandem with treatment, the Campaign emphasizes the need for social support services, health education and counseling to help treated women reintegrate into society. For all three of these components, the Campaign also empowers communities and decision makers to take action to improve maternal health.
Increasing availability of resources through, for example, targeted fundraising by UNFPA and the introduction of new government donors, such as the United States Agency for International Development (USAID), is helping to support these programs. More and more partners are joining the Campaign — bringing new areas of expertise and perspectives. These include technical organizations, faith-based groups and non-governmental organizations, as well as private sector companies and philanthropic individuals. The Campaign website (www.endfistula.org), launched in 2004, serves as a portal for information-sharing about the Campaign. The combined voices and greater resources are helping to bring international attention to the problem, as evidenced by increasing coverage of obstetric fistula by major international media and inclusion at regional and global public health forums.
4.1. Continuing to assess needs
As of October 2005, rapid needs assessments on obstetric fistula, including the initial nine-country study, have been completed in 21 countries in Africa and Asia. Results from these studies are expanding knowledge of where curative services exist, why fistula continues to persist, and the level of awareness about obstetric fistula, its causes and its treatment among health providers, communities and policy makers. A number of countries have also elected to conduct further research to explore more closely fistula's determinants and consequences in order to plan national programs.
The Ministry of Health in Kenya, for example, supported by UNFPA, undertook a study based in four districts to better understand underlying socio-cultural factors, health seeking behaviors and availability and utilization of essential obstetric services. The study found that the combination of rugged landscape, long distances to health facilities and societal preferences for delivery with a traditional birth attendant contributed to delays in accessing necessary obstetric care. Prevention of obstetric fistula was further hindered by low utilization of the partograph to monitor labor and human resource limitations including nursing shortages and inadequate supportive supervision. The district hospitals included in the study showed potential to provide repair, but needed strengthening to ensure more regular service. The general belief was that more cases were seen than repaired and more cases existed in the regions than presented at the facilities. These findings also highlighted the need to recognize the contextual variations in community perception between countries and within countries. Unlike many previous studies, three of the four communities understood that fistula is caused by a difficult childbirth and were largely sympathetic to women living with fistula, whereas in the fourth community the level of stigma associated with the condition was high. This community perceived fistula as an indication that a woman ‘is not woman enough’, rather than a consequence of childbirth [13].
In Burkina Faso, in addition to the facility-based assessment, a separate study was conducted by the Ministry of Health to examine the socio-cultural barriers women face in accessing maternal health care and while living with obstetric fistula. The study, which included focus groups and interviews with community members, health providers and women with fistula, highlighted the nuances in community perceptions of the condition. Unlike the communities in Kenya, few community members understood that fistula was a medical condition. Many believed, rather, that fistula was the result of fate or divine punishment inflicted for bad behavior (infidelity, disrespect of elders) or a curse by an offended party. Those familiar with the condition were more likely to be women than men. Younger women were more likely to link the condition to pregnancy or childbirth and older members of the community typically perpetuated the previously described misperceptions [14].
Women living with fistula who were interviewed for this study could usually make the connection between a difficult delivery and the subsequent fistula, although some attributed the cause to cesarean section. Several women noted that their husbands or mothers-in-law had refused to pay for transport or medical services when requested. The majority felt that the fistula could have been avoided by earlier evacuation to a hospital by their families or by better care by the health providers. And, although their birth families were typically supportive, the women suffered from low self-esteem, feelings of humiliation, and poverty worsened by their inability to participate in economic activities [14].
4.2. Moving from research to action
The needs assessments, as the first step in the Campaign at the national level, are providing the necessary information base for advocacy and national planning toward the elimination of obstetric fistula. Findings from the needs assessments in Benin, for example, have provided the data necessary to demonstrate the impact of obstetric fistula. Messages were developed for stakeholders using the findings with emphasis placed on the cause and effect relationship between maternal mortality and morbidity and the social and economic situation. It was also possible to provide policy makers with a clear plan of action based on existing capacities. As a result, fistula was integrated into the national reproductive health plan and an intermediate plan for fistula elimination was developed [15].
In Nigeria, needs assessments highlighted the country's long experience in addressing obstetric fistula and discovered numerous efforts underway; yet, the studies also found little coordination among these initiatives [16]. The national taskforce, a diverse body assembled by the Federal Government, collaboratively developed a comprehensive strategy, which is now close to adoption at the national level. The strategy is multi-sectoral and includes clear and ambitious targets, such as 80% reduction in both the incidence of fistula and the backlog of patients awaiting fistula repair by the year 2015. The comprehensive framework focuses on six areas, including advocacy and resource mobilization, social mobilization and behavior change communication, human resource and infrastructure development, research and coordination and management [15].
4.3. The role of partnerships
The global partnership is reflected at national levels in various forms, such as national alliances, more streamlined steering committees and technical working groups, and sub-committees of national safe motherhood partnerships. The partnerships plan and monitor development of national strategies to eliminate fistula and help to ensure a comprehensive response, to avoid duplication and to place fistula in the context of broader development plans.
The “Network for Fistula Eradication” in Niger, launched by official decree in 2004, is a good example of the broad partnerships that are being formed. It has over 40 members representing the government of Niger, national non-governmental organizations and community-based organizations including the national medical association, health professionals, donors and the media. The broader group meets annually, the smaller steering committee more regularly, and an office has been established in the Ministry of Public Health. The Network focuses on synchronizing interventions, monitoring implementation of the national strategy, and advocacy and resource mobilization for obstetric fistula and emergency obstetric care. While still at an early stage, the Network has already begun to reduce taboos surrounding fistula and raise national awareness of the issue [15]. A national strategy for Niger is also being developed through this partnership and was slated for adoption in late 2005.
4.4. Providing treatment services
Across Africa and Asia, treatment is being provided in a variety of settings, including in stand-alone specialist fistula centers, in dedicated fistula units in general and specialist hospitals sometimes as part of gynecology and urology departments and through outreach services and camps in remote areas. Before the Campaign, many local health professionals and organizations were struggling to provide services on a regular basis as a result of numerous constraints. Support was needed to strengthen the facilities, including adequate equipment and sustainable supplies, to improve the skills of staff and to subsidize services. All too often, obstetric fistula cases were forced off operation schedules. In the broader health care system, most countries lacked national protocols for fistula treatment and rehabilitation, and greater awareness was required to ensure adequate referrals, as well as to integrate the services into the general health system [11].
Although initiatives to strengthen services are still at an early stage, some promising examples are available. Support provided in Bangladesh, Chad, and Mali, to name but a few locations, is helping to increase the accessibility of services. In Bangladesh, a specialist fistula center has been established at the Dhaka Medical College Hospital with support from UNFPA. A newly renovated ward and operating theatre enable operations to be performed three days per week and annual number of cases treated has more than doubled. Moreover, 46 surgeons and 30 nurses have received training in fistula repair utilizing a newly developed curriculum and trainee manual [17]. In addition, Liberty Hospital in N'djamena, Chad has received support from UNFPA to create a specialized fistula unit and the team from the hospital also conducts annual mobile clinics to provide services to women in outlying areas [18]. Further, capacity to treat fistula has increased fourfold within the urology department at Point G Hospital in Mali, with at least 16 women treated on a weekly basis, due to the establishment of a well-equipped separate theatre for fistula surgery. The unit also has increased capacity to train surgeons and nurses [19] (Fig. 2).
Fig. 2.
Dr. Idriss Halliru with a patient during the “Fistula Fortnight”, a two-week pilot initiative that provided treatment for hundreds of women in Northern Nigeria (Photo credit: Richard Stanley).
In February 2005, over 500 women received free treatment in one of the largest surgical camps held to date for obstetric fistula. Conducted at four sites in northern Nigeria, the Fistula Fortnight was the result of the combined efforts of the Federal and State Governments of Nigeria, 13 Nigerian expert fistula surgeons, four international surgeons, the Nigerian Red Cross, UNFPA, Virgin Unite, Voluntary Service Overseas and Grassroots Health Organization of Nigeria. The project's aim was to help reduce the backlog of patients awaiting surgery, to build capacity to provide treatment services at the sites, and to raise awareness and leverage commitment for obstetric fistula and maternal health. An extensive nine-month preparation period was undertaken for the Fortnight, including strengthening the involved facilities through renovation, provision of equipment and staff training in fistula treatment. During the two-week initiative, Nigerian and international experts in fistula provided free treatment to women. Due to a concerted media and awareness raising strategy, the event drew national and international attention to the issue, and the need for greater commitment towards prevention and treatment of obstetric fistula.
Finally, on both global and regional levels, health professionals are joining together to strengthen guidance for treatment, care and training. The forthcoming WHO manual provides basic principles for surgical and pre- and post-operative care. The development of standardized protocols is to some extent hampered by a lack of evidence-based results, and efforts are now underway to promote research and to harmonize data collection across countries to allow for comparative analysis of techniques and outcomes. Expert trainers recently met to develop basic standards and guidelines for the training of health professionals and the development of national training strategies. These preliminary recommendations provide guidance for the design of national programs, but further evaluation and research for validation is required [20].
4.5. Working with communities
The importance of addressing obstetric fistula at community levels has been emphasized since the beginning of the Campaign. Community initiatives focusing on fistula will help to not only raise awareness about obstetric fistula, but also may serve as a focalizing point to stimulate community action to reduce maternal mortality and morbidity. A pilot initiative in Eritrea is looking more closely at this idea. The intervention design is based on a safe motherhood community-based program, currently implemented by the Eritrean government in other regions. It entails training local health center staff and community health volunteers to sensitize and mobilize communities regarding the risks and special needs that arise during pregnancy and delivery. Specific components on obstetric fistula prevention and treatment have been added to the curriculum. Intervention and control communities will undergo both pre- and post-test surveys and focus group discussions [21]. With this analysis, it will be possible to determine the impact of introducing content on a perceptible consequence of poor obstetric care, such as fistula, within safe motherhood community mobilization efforts.
4.6. Helping women to reintegrate into society
Obstetric fistula is a medical condition with acute and chronic social, economic and psychological consequences. To date, follow-up with women after treatment has been limited due to difficulties in locating women after they leave the treatment facility–inhibiting understanding of what women require to fully reintegrate into society. More agencies are now concerned with addressing these issues, and needs assessments are helping to identify the concrete needs for rehabilitative care.
Experiences of national non-governmental organizations, with closer ties to the community, are also helping to shed light on what needs to be done. Two community organizations in Mali have experience in supporting women living with fistula. Delta Survie has been providing skills training in textile production, with the aim of improving the socio-economic situation of women with fistula [22]. Another organization, IAMANEH Suisse, has been involved in identifying and assisting women with fistula to access treatment services and following-up after treatment to prevent recurrence in the next pregnancy [23]. In Niger, the organization DIMOL has established a center to train women in income generating skills, and accompanies women to their communities to conduct health education sessions and counsel their families [15]. Similar skills training initiatives are also underway in Chad and Bangladesh. In addition, EngenderHealth is in the process of developing a curriculum to train a range of providers in the provision of counseling for women with fistula [24].
5. Moving towards elimination
Great progress has been achieved in the few years since the birth of the Campaign to End Fistula. Coverage by major international media, increasing resources, and rising national commitments across Africa and Asia are signs of growing global consciousness about obstetric fistula. Several recent events have yielded even greater commitment, building on these early successes.
An expert group came together in October 2005 to reflect on how to strengthen the Campaign by exploring elements that have made other public health campaigns successful, including disease eradication efforts [25]. Drawing from a variety of experiences brought a fresh perspective to the issue. The extensive data collection undertaken by disease eradication program was noted especially and participants agreed better measures of prevalence and incidence are crucial to move efforts forward. Due to the remarkable growth of the Campaign, there was also a call to strengthen the international partnership to ensure greater coordination of efforts and clarity of messages.
At a regional conference in Africa, representatives from the Ministry of Health of 34 countries and international partners reviewed experiences in fistula elimination in the region. Together, they developed a Call to Action to Make Motherhood Safer by Eliminating Obstetric Fistula, which urges governments to strengthen health systems to provide reproductive and maternal health care for all including treatment of obstetric fistula, to address issues of gender inequity, and to allocate greater resources for health, particularly for maternal health care. They also took the first steps toward creating a strategy to guide regional endeavors to eliminate fistula. There was overwhelming consensus at both forums that obstetric fistula has potential to act as a catalyst for broader action to improve maternal health.
After surviving a near-death experience, women with fistula must often suffer the loss of their baby and their life as they once knew it. Yet, no woman need suffer from these devastating consequences. We know the interventions that can reduce maternal death and disability, including obstetric fistula, and we know how to treat the condition. Examples from other countries show that fistula can be eliminated, even in limited-resource settings. These examples give hope that one day, with joint effort and commitment, obstetric fistula will be eliminated from every community around the globe.
References
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PII: S0020-7292(06)00155-X
doi:10.1016/j.ijgo.2006.04.005
© 2006 International Federation of Gynecology and Obstetrics. Published by Elsevier Inc. All rights reserved.
Volume 94, Issue 3 , Pages 254-261, September 2006
