- Email: [email protected]
Strengthening public health priority-setting through research on fistula, maternal health, and health inequities
International Journal of Gynecology and Obstetrics (2007) 99, S16–S20
a v a i l a b l e a t w w w. s c i e n c e d i r e c t . c o m
w w w. e l s e v i e r. c o m / l o c a t e / i j g o
CRITICAL ISSUES
Strengthening public health priority-setting through research on fistula, maternal health, and health inequities M. Bangser ⁎ Women’s Dignity Project, Dar es Salaam, Tanzania
KEYWORDS Health inequity; Maternal mortality; Obstetric fistula
Abstract Objective: Findings from 4 studies conducted by the Women’s Dignity Project and partners on the subjects of obstetric fistula, maternal mortality and morbidity, and health inequities are presented. Methods: The studies include qualitative and quantitative research, a survey, and an analysis of secondary data that examine women’s experiences of fistula; constraints in service delivery for fistula treatment; factors shaping women’s access to delivery care and constraints health workers face in providing care; and health inequities. Results: Findings from the studies are being used to improve fistula prevention and management, strengthen access to and provision of quality maternity care, and redress the health inequities that so adversely affect the poor. Conclusion: The studies provide policy makers, program managers, and service providers with evidence and the impetus to re-equilibrate policies, financial and human resources, and services in the interest of those in greatest need: women living in poverty. © 2007 International Federation of Gynecology and Obstetrics. Published by Elsevier Ireland Ltd. All rights reserved.
1. Introduction Obstetric fistula has finally emerged on the international public health agenda as an issue requiring-and deservingconcerted action. A fistula is a serious childbirth injury that leaves girls and women incontinent of urine and/or feces after prolonged and obstructed labor. It is estimated that approximately 2 million girls and women worldwide live with a fistula [1] and almost all of these girls and women live in ⁎ Women’s Dignity Project, PO Box 79402, Dar es Salaam, Tanzania. Tel.: +255 22 2152577 8; fax: +255 22 2152986. E-mail address: [email protected].
resource-poor countries of Africa and South Asia. The condition is preventable and in most cases treatable. The medical and social impact of the condition demands that urgent attention be focused on dramatically decreasing the incidence of fistula as a matter of human rights and women’s dignity. A fistula is more than a woman’s health problem. Its roots are embedded in economic, political, and social determinants that underlie poverty and vulnerability. These include limited financial expenditure on basic and maternal health care services for the poor; the absence of governance structures that bring the voices of marginalized people into public policy setting; the lack of transparency in the allocation of
0020-7292/$ - see front matter © 2007 International Federation of Gynecology and Obstetrics. Published by Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.ijgo.2007.06.016
Strengthening public health priority-setting through research public funds, including for “priority” social sectors such as health; and the exclusion of women and girls from decisionmaking processes [2]. Clarifying the determinants of fistula sheds light on the overall health status of women living in poverty and on the factors that drive fundamental health inequities. Research into the continuum of these issues-fistula, maternal health among women living in poverty, and health inequities-can help shape public health interventions and resource allocation to better meet the needs of the poor.
2. Rationale and methods Four research studies conducted, or currently underway, by the Women’s Dignity Project (WDP) are presented. The summarized findings illuminate how research on a particular condition affecting the poor, together with analyses of the determinants of poor people’s health, could be used to shape public health priorities. These studies are on the following subjects: fistula and social vulnerability; hospitals providing fistula repairs; women’s and providers’ views of barriers to accessing high quality maternity care; and health inequalities in tanzania. Women’s Dignity Project (“Utu Mwanamke” in Kiswahili) is a nongovernmental organization (NGO) based in Dar es Salaam, Tanzania. It works at the local, national, and international levels to prevent and manage fistula within the broader context of health and gender equity and human rights. By working on the parallel paths of fistula and health equity, the determinants and impact of health conditions affecting the poor are addressed. Women’s Dignity Project has 4 key programs. Communitybased participatory research on fistula and social vulnerability involves extensive research in 6 districts of Tanzania and Uganda with girls and women living with a fistula, their families and communities, and local health workers. Institutional networking, of which WDP is a lead organization, implements the National Fistula Program in Tanzania along with the Ministry of Health, the African Medical Research Foundation, and other stakeholders. Major activities include fistula prevention and the training of health workers in fistula treatment; research on issues concerning fistula; public education and advocacy; and reintegration of women after fistula repair. Public engagement mobilizes debate and action on fistula and the health rights of the poor, including media and strategic policy analysis of the determinants of health inequity. And regional and global linkages leverage actions against fistulas and health inequity among international agencies and donors, governments, local communities, health workers and health advocates, and the medical and scientific communities.
3. Four studies and their results 3.1. Study 1: Fistula and Social Vulnerability in Tanzania and Uganda [3] The purpose of this study, begun in 2002, is to increase understanding of the social and health system determinants of fistula. It focuses on the challenges that women face when they need to access quality care at the time of delivery; on the impact of fistulas on women’s lives; and on people’s explanations for the appearance of fistulas. It also explores failures in the health and social systems that have resulted in
S17 fistulas, and emphasizes the personal experiences of girls and women. The study, conducted by Women's Dignity Project, Engender Health, and three local groups in Tanzania and Uganda, involved 137 girls and women in the two countries. The families of many of these girls and women, as well as community members and local health workers, also participated in the study. In-depth interviews, group discussions, and problem trees were the key methods used, focusing on the pregnancy, labor, and delivery experience of the girls and women; their experience following fistula repair; and their recommendations for action to prevent and manage fistulas. The girls and women identified for the study received treatment during and after the study, and additional girls and women identified by local research partners after the formal study ended also received treatment for their fistulas. In total, 142 girls and women received treatment with support from the Women’s Dignity Project, 107 during the study period and 35 through the local partners after the study ended. Girls and women were identified for the study at the participating hospitals providing fistula repairs, with assistance from Reproductive and Child Health Coordinators in participating districts, and through field visits to communities in those districts. All participants consented to be interviewed for the study. The study was approved by the National Institute of Medical Research in Tanzania. The Ministry of Health in Uganda advised that the study could be implemented as a formal activity of the 3 Ugandan research partners, with communication to the Ministry of Health on the progress of the study. Three key findings of the study challenge frequently held myths about girls and women affected with a fistula. The first key finding relates to the mean age at which the fistula occurred, 23 years in Tanzania and 22 years in Uganda. Fewer than half of the Tanzanian participants were 19 years or younger and most Ugandan participants were between the ages of 15 and 19 years. Most, therefore, were not adolescents when their fistula occurred, which is contrary to the general perception. The second key finding is that many of the girls and women received financial and emotional support from their families, and some received help from their communities. Nearly all of the women mentioned being supported by at least 1 person, typically a family member, but also by people in the community or an employer. None of the women were totally isolated and unsupported. This may be a function of the method of recruitment, in that the whereabouts of the more isolated women might not have been be known by the health workers who participated in the study. Nonetheless, the fact that all women mentioned some type of support does indicate that they were not completely isolated. Third, the study found that once they were healed of their fistulas, girls and women generally reintegrated themselves back into their families and communities. Almost all the women mentioned that after repair they were able to perform domestic chores, and that their relationships with the community improved.
3.2. Study 2: Tanzania Fistula Survey 2001 [4] This survey was conducted in 2000 and 2001 in Tanzania by the Women’s Dignity Project and the Tanzania Ministry of Health.
S18 The purpose was to gather information on fistula repair and care from all public and mission hospitals in Tanzania; disseminate this information widely; identify major gaps in service delivery across the country; and begin organizing a referral system so that girls and women could access treatment. A simple, 1-page survey instrument was sent to the hospitals. It included questions on the approximate number of repairs done per year, locations from which many patients come, presence in the hospital of health care providers trained in fistula treatment, cost of treatment, availability of supplies and equipment for repairs, and recommendations for the prevention and management of fistula. The list of 161 hospitals on mainland Tanzania provided by the Ministry of Health included district, regional, and mission hospitals, but referral hospitals were also contacted. More than 85% of the hospitals responded to the survey. Fifty hospitals reported having performed fistula repairs, for a total of 712 repairs in the 2000–2001 reporting period [5]. The number of repairs performed across hospitals ranged considerably, from just 1 to 172. Most hospitals providing the service are situated around the perimeter of Tanzania, with many girls and women needing to travel more than 500 km to reach one of the major centers for fistula repair. The survey found that while 12 physicians in the country had received some form of training in fistula repair, the dependency on foreign visiting surgeons was high. Importantly, many respondents commented that it was difficult, if not impossible, for many girls and women to access treatment because of the cost and the lack of transportation. Following the survey, a map illustrating the location of hospitals providing repair and the type of provider (e.g., resident physician or visiting surgeon) was disseminated throughout the country. The information assisted health workers, NGOs, and others in referring women appropriately for fistula treatment. Recommendations of the study formed the basis of the National Fistula Program in Tanzania, launched in 2005. The program’s major objectives include: 1. Enabling local health care providers to treat and manage fistulas and prevent the condition 2. Ensuring that girls and women are able to access highquality fistula care in an efficient manner, and return to a life of dignity following treatment 3. Increasing public awareness and understanding of the condition, and the maternal mortality and morbidity that it can cause, to better mobilize action for fistula prevention and treatment, and for the social reintegration of affected women 4. Developing strategies to prevent fistulas and provide an effective “lens” onto maternal mortality and morbidity (MM&M) and the health of the poor through increased understanding of fistula at the family, community, and health systems levels 5. Building a partnership among government, nongovernmental actors, professionals, the media, and others to address fistula in the context of MM&M and the health needs of the poor The 2001 Survey was updated in 2005. The update produced a revised list of hospitals providing fistula repair.
M. Bangser The update also provided information on the particular institutions, such as local churches and peripheral health facilities that refer patients to hospitals for care. These findings helped establish a more formalized referral system for women with fistulas, now being piloted in 5 regions. Partners in the system are hospitals, peripheral-level health facilities, NGOs, and faith-based organizations.
, , 3.3. Study 3: women s and providers views of barriers to accessing high-quality maternity care [6] This qualitative study seeks to understand why low numbers of Tanzanian women are delivered at health facilities or by trained health workers despite the high numbers who receive antenatal care. The findings of the 2004–2005 Tanzania Demographic and Health Survey [7] confirm a disturbing trend for 3 important proxy indicators of maternal mortality in Tanzania: fewer than half of all pregnant women are delivered at a facility, fewer than half of all pregnant women are delivered by a skilled attendant, and only 3% of deliveries are by cesarean section. The study used semistructured interviews, group discussions, and case studies with women who had been recently delivered; health workers responsible for labor and delivery; and traditional birth attendants. The study was conducted in 3 districts of Tanzania and facilitated by the Ministry of Health. Women were asked questions on their choices regarding place of delivery, their perceptions of the choices other women make, the constraints they and other women faced in delivering with trained providers, and the quality of care they and other women received during childbirth in various settings. Health workers, including midwives, were likewise asked about their perceptions of why women make different choices regarding place of delivery; about the types and quality of labor and delivery services health workers are able to provide; and whether they felt they were working in an “enabling environment” to provide high-quality labor and delivery care. The preliminary review of the data suggests that women feel they have no choice but to be delivered at home because of distance, cost, and other factors limiting access to formal care; that women have a limited sense of entitlement to the free pregnancy and delivery services the government offers; that facilities lack supplies and equipment for delivery; and that health workers face poor working conditions, including low numbers and pay as well as a lack of training.
, 3.4. Study 4: Fair s Fair: Health Inequalities and Equity in Tanzania [8] The purpose of this study is to help explain patterns and causes of ill health among population subgroups in Tanzania, in order to improve priority setting and resource allocation in the health sector, including in under-resourced areas such as maternal health. The study analyzed key health variables to identify how much and why indicators differ across population subgroups. The Women’s Dignity Project was particularly interested in examining
Strengthening public health priority-setting through research differences in women’s effective access to health care services, i.e., differences in the actual utilization of services rather than differences in distance to a peripheral facility. The findings are important in shaping priority setting and resource allocation to basic and maternal health care in the country. The analysis looked at variations in health indicators, such as health status, mortality, and malnutrition, according to variables such as geographic location, poverty quintile, and educational attainment. Secondary data sources were used, including the 2004–2005 Tanzania Demographic and Health Survey [7], the 1999 Reproductive and Child Health Survey [9], the 2002 Population and Housing Census [10], sentinel site studies [11,12], and the 2001 Tanzania Household Budget Survey [13]. The study shows that health outcomes are worse for people living in poverty than for those from higher income groups. The greatest gaps are in maternal and reproductive health indicators, with especially large gaps between women from the highest and lowest educational levels. Part of the reason for the inequalities in people’s effective access to health care is distance to a health care facility, and this is clearly a greater problem for those living in poverty. The poor also experience differences in quality of care: where they receive it, who supplies it; and the way they are treated by providers. In relation to maternal health, findings showed that in all instances women from richer households consumed more of any given service than the poorest women. The differences are especially large in Tanzania for contraceptive use, skilled assistance at the time of delivery, availability of cesarean delivery, postnatal care, and use of insecticidetreated nets. There are substantial differences between wealth groups even in the services that are supposed to be near universal, such as vaccination. The distance that rural women must travel to reach a hospital where cesarean deliveries are performed is an impediment for those who risk obstructed labor. Cost remains a major barrier to accessing health care that disproportionately affects the poor. According to the Tanzania Demographic and Health Survey, “getting money for treatment” was the single greatest problem encountered by women needing health care.
4. Discussion Fistula formation and poor health are “markers” for inequities that undermine the capacity of girls and women to achieve good health and well-being after childbirth. Likewise, the health outcomes of the poor reflect the “structural violence” [14] that perpetuate the devastating conditions contributing to the unacceptably low health status of the most marginalized members of society. Public health priorities should focus on both the health conditions affecting poor women and marginalized people more generally, and the underlying inequities that threaten the health rights of the poor. Asha’s story, drawn from the study on Risk and Resilience: Obstetric Fistula in Tanzania illustrates the impact of these pervasive inequities on the health and well-being of women in poverty:
S19
Box 1 , Asha s story Asha lives in a small village where her husband works as a guard at the village government office, earning very little money. When Asha went into labor with her second child, her husband borrowed $6 from the village government in order to rent a wheelbarrow that could take Asha to a road. From , the main road, Asha s husband then found a car to drive them to the hospital, and this cost $60. Because he had no money, he had to hire the vehicle on credit. At the hospital, Asha got a cesarean section but the baby died. Asha developed a fistula. The bill for the cesarean section was $40, and in order to pay , this Asha s husband had to request more money from the village government. Their terms of the loan required him to work for free until his meager salary had paid off the $40 in full. This left the family without any income. The family struggled to help Asha stay clean, but the closest well is a six-hour walk away. Each time Asha used water to wash the urine from her clothes and body, she depleted the supply of water for her husband and daughter, and for the cooking and cleaning. Her husband pays 10 cents per day to get one bucket of water, and each bucket of water adds to the debt that the family has already accumulated. The owner of the vehicle that transported Asha to the hospital for delivery harassed the couple for money until Asha’s husband was forced to sell a plot of land to pay. He also had to sell five cows because the land was not enough to pay the debt. Friends gather together $15 to help pay off the debt and to take Asha to a hospital where she eventually got a fistula repair. While she is , healed, her family s financial situation is grave. Her husband owes $25 for the transportation and is still working for free to repay the hospital loan. Adapted from Faces of Dignity , Women s Dignity Project, 2003 Findings from the study on Fistula and Social Vulnerability have shown that fistula is a problem that affects young girls and older women alike. Fistula, and maternal mortality and morbidity, know no age distinction and health services must respond to needs across the age spectrum. Findings of the study differ significantly from the prevailing assumption that fistula is largely a problem concerning adolescent girls. The findings also challenge the prevailing notion that all girls and women living with fistulas are abandoned, shunned, and socially isolated from their families and communities. While many girls and women with fistulas have endured tremendous
S20 assaults to their health and dignity, and isolate themselves from community events, many also live with remarkable resilience and within their family structures. Public portraits of these girls and women must show the full range of their experiences-including their courage and social supports — to be factually correct, and to give a positive example of how families can rally around this devastating condition. And lastly, findings of the study indicate that once healed of their fistulas, girls and women often reintegrate themselves back into their families and communities. While those who are not healed may continue to experience sharp social isolation, it appears that a successful fistula repair enables a woman to return home and start her life anew. As the Tanzania Fistula Survey 2001 and its 2005 update show, simple data collection can identify systematically where fistula repair services are available, the training needs of physicians and nurses, and avenues to link girls and women having fistulas with available treatment. Data have provided the basis for the newly established National Fistula Program and its referral system. Health facilities, NGOs, and faithbased organizations now help girls and women reach hospitals providing repair, and assist with disseminating information on fistula and the health rights of the poor. The data have also supported a major public information campaign to disseminate information on the availability of fistula services through regional and national radio as well as in print. In addition, data from the survey and from the study on health inequalities have been used in advocacy efforts on a particular issue of health equity: the equitable deployment of health care workers to remote areas. The data illustrate the wide gaps in the allocation of health workers throughout the country, a key factor underlying fistula and maternal mortality. The study on Women’s and Providers’ Views of Barriers to Accessing High Quality Maternity Care feeds directly into current efforts to break the inertia surrounding maternal mortality and morbidity. Like other countries of Africa, Tanzania has made little progress, if any, to stem the tide of women dying in childbirth. The study identifies specific constraints that women face in accessing — or choosing to accessskilled attendance at delivery, and the constraints that health workers face in delivering quality care. The information will be used for policy and service delivery interventions, such as equitable deployment of skilled attendance for childbirth, and to reduce costs associated with delivery, minimize distance and transport obstacles, and significantly improve the quality of care provided. The last and broadest-reaching of the 4 studies: Fair’s Fair: Health Inequalities and Equity in Tanzania will advance the debate on the “haves” and “have-nots” in terms of health. The study’s findings on maternal health show that women from richer households consume more services than the poorest women, and that poorer, lesser-educated, and rural households use the available health care the least. These findings provide evidence and impetus to public health professionals, service managers, and service providers to re-equilibrate policies as well as financial and human resources and services in the interest of those in greatest need: women living in poverty. Mobilizing meaningful action for improved maternal health at the policy level and in the delivery of basic and maternity services could redress some
M. Bangser of these imbalances. In the short run, this would mean hiring and deploying health workers equitably, including for maternal health; this would also mean decreasing barriers such as difficult physical access, poor quality, and high cost. In the long run, however, change will require addressing the fundamental determinants of the inequalities, such as the educational level and nutritional status of poor women. Conflict of Interest None. Role of the funding source No funding sources were involved in this study.
Acknowledgements The Women’s Dignity Project extends its deep appreciation to the many girls and women who have shared their stories about living with an obstetric fistula. Thanks also go to our partner NGOs, hospitals, health workers, consultants, and others who have assisted Women’s Dignity Project in identifying strategies to address fistula and the health rights of the poor.
References [1] World Health Organization. Health dimensions of sex and reproduction: the global burden of disease. Geneva, Switzerland: WHO; 1998. p. 253. [2] Women’s Dignity Project. Faces of dignity. Tanzania: Dar es Salaam; 2003. p. 2–3. [3] This study is being conducted by the Women’s Dignity Project, EngenderHealth (USA), three NGOs/hospitals in Tanzania, and three NGOs/hospitals in Uganda. Funding is provided largely by the Department of International Development, London, UK. [4] This study was conducted in partnership with the Ministry of Health in Tanzania, and with funding from the United Nations Population Fund and The Ford Foundation. [5] Author’s note: in 2005, 1058 fistula repairs were done in Tanzania, marking significant progress in making treatment more available to girls and women living with the condition. [6] This study is being conducted in collaboration with CARE/Tanzania. [7] National Bureau of Statistics and Macro International: 2004/5 Tanzania Demographic and Health Survey. 2005. [8] This study was conducted in collaboration with the Ifakara Health Research and Development Centre, Tanzania. The author is Paul Smithson. [9] National Bureau of Statistics and Macro International: 1999 Tanzania Reproductive and Child Health Survey. 2000. [10] National Bureau of Statistics. National Population and Housing Census; 2002. [11] National Sentinel Surveillance System and Adult Morbidity and Mortality Project Working Paper No. 1, Ministry of health. 2001. [12] National Sentinel Surveillance System and Adult Morbidity and Mortality Project Working Paper No. 2, Ministry of health. 2002. [13] National Bureau of Statistics. Household budget survey 2000/ 01; 2002 [Location of study]. [14] Kim JY, Millen JV, Irwin A, Gershman J, editors. Dying for growth: global inequality and the health of the poor. Monroe, ME: Common Courage; 2000. p. 106.
a v a i l a b l e a t w w w. s c i e n c e d i r e c t . c o m
w w w. e l s e v i e r. c o m / l o c a t e / i j g o
CRITICAL ISSUES
Strengthening public health priority-setting through research on fistula, maternal health, and health inequities M. Bangser ⁎ Women’s Dignity Project, Dar es Salaam, Tanzania
KEYWORDS Health inequity; Maternal mortality; Obstetric fistula
Abstract Objective: Findings from 4 studies conducted by the Women’s Dignity Project and partners on the subjects of obstetric fistula, maternal mortality and morbidity, and health inequities are presented. Methods: The studies include qualitative and quantitative research, a survey, and an analysis of secondary data that examine women’s experiences of fistula; constraints in service delivery for fistula treatment; factors shaping women’s access to delivery care and constraints health workers face in providing care; and health inequities. Results: Findings from the studies are being used to improve fistula prevention and management, strengthen access to and provision of quality maternity care, and redress the health inequities that so adversely affect the poor. Conclusion: The studies provide policy makers, program managers, and service providers with evidence and the impetus to re-equilibrate policies, financial and human resources, and services in the interest of those in greatest need: women living in poverty. © 2007 International Federation of Gynecology and Obstetrics. Published by Elsevier Ireland Ltd. All rights reserved.
1. Introduction Obstetric fistula has finally emerged on the international public health agenda as an issue requiring-and deservingconcerted action. A fistula is a serious childbirth injury that leaves girls and women incontinent of urine and/or feces after prolonged and obstructed labor. It is estimated that approximately 2 million girls and women worldwide live with a fistula [1] and almost all of these girls and women live in ⁎ Women’s Dignity Project, PO Box 79402, Dar es Salaam, Tanzania. Tel.: +255 22 2152577 8; fax: +255 22 2152986. E-mail address: [email protected].
resource-poor countries of Africa and South Asia. The condition is preventable and in most cases treatable. The medical and social impact of the condition demands that urgent attention be focused on dramatically decreasing the incidence of fistula as a matter of human rights and women’s dignity. A fistula is more than a woman’s health problem. Its roots are embedded in economic, political, and social determinants that underlie poverty and vulnerability. These include limited financial expenditure on basic and maternal health care services for the poor; the absence of governance structures that bring the voices of marginalized people into public policy setting; the lack of transparency in the allocation of
0020-7292/$ - see front matter © 2007 International Federation of Gynecology and Obstetrics. Published by Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.ijgo.2007.06.016
Strengthening public health priority-setting through research public funds, including for “priority” social sectors such as health; and the exclusion of women and girls from decisionmaking processes [2]. Clarifying the determinants of fistula sheds light on the overall health status of women living in poverty and on the factors that drive fundamental health inequities. Research into the continuum of these issues-fistula, maternal health among women living in poverty, and health inequities-can help shape public health interventions and resource allocation to better meet the needs of the poor.
2. Rationale and methods Four research studies conducted, or currently underway, by the Women’s Dignity Project (WDP) are presented. The summarized findings illuminate how research on a particular condition affecting the poor, together with analyses of the determinants of poor people’s health, could be used to shape public health priorities. These studies are on the following subjects: fistula and social vulnerability; hospitals providing fistula repairs; women’s and providers’ views of barriers to accessing high quality maternity care; and health inequalities in tanzania. Women’s Dignity Project (“Utu Mwanamke” in Kiswahili) is a nongovernmental organization (NGO) based in Dar es Salaam, Tanzania. It works at the local, national, and international levels to prevent and manage fistula within the broader context of health and gender equity and human rights. By working on the parallel paths of fistula and health equity, the determinants and impact of health conditions affecting the poor are addressed. Women’s Dignity Project has 4 key programs. Communitybased participatory research on fistula and social vulnerability involves extensive research in 6 districts of Tanzania and Uganda with girls and women living with a fistula, their families and communities, and local health workers. Institutional networking, of which WDP is a lead organization, implements the National Fistula Program in Tanzania along with the Ministry of Health, the African Medical Research Foundation, and other stakeholders. Major activities include fistula prevention and the training of health workers in fistula treatment; research on issues concerning fistula; public education and advocacy; and reintegration of women after fistula repair. Public engagement mobilizes debate and action on fistula and the health rights of the poor, including media and strategic policy analysis of the determinants of health inequity. And regional and global linkages leverage actions against fistulas and health inequity among international agencies and donors, governments, local communities, health workers and health advocates, and the medical and scientific communities.
3. Four studies and their results 3.1. Study 1: Fistula and Social Vulnerability in Tanzania and Uganda [3] The purpose of this study, begun in 2002, is to increase understanding of the social and health system determinants of fistula. It focuses on the challenges that women face when they need to access quality care at the time of delivery; on the impact of fistulas on women’s lives; and on people’s explanations for the appearance of fistulas. It also explores failures in the health and social systems that have resulted in
S17 fistulas, and emphasizes the personal experiences of girls and women. The study, conducted by Women's Dignity Project, Engender Health, and three local groups in Tanzania and Uganda, involved 137 girls and women in the two countries. The families of many of these girls and women, as well as community members and local health workers, also participated in the study. In-depth interviews, group discussions, and problem trees were the key methods used, focusing on the pregnancy, labor, and delivery experience of the girls and women; their experience following fistula repair; and their recommendations for action to prevent and manage fistulas. The girls and women identified for the study received treatment during and after the study, and additional girls and women identified by local research partners after the formal study ended also received treatment for their fistulas. In total, 142 girls and women received treatment with support from the Women’s Dignity Project, 107 during the study period and 35 through the local partners after the study ended. Girls and women were identified for the study at the participating hospitals providing fistula repairs, with assistance from Reproductive and Child Health Coordinators in participating districts, and through field visits to communities in those districts. All participants consented to be interviewed for the study. The study was approved by the National Institute of Medical Research in Tanzania. The Ministry of Health in Uganda advised that the study could be implemented as a formal activity of the 3 Ugandan research partners, with communication to the Ministry of Health on the progress of the study. Three key findings of the study challenge frequently held myths about girls and women affected with a fistula. The first key finding relates to the mean age at which the fistula occurred, 23 years in Tanzania and 22 years in Uganda. Fewer than half of the Tanzanian participants were 19 years or younger and most Ugandan participants were between the ages of 15 and 19 years. Most, therefore, were not adolescents when their fistula occurred, which is contrary to the general perception. The second key finding is that many of the girls and women received financial and emotional support from their families, and some received help from their communities. Nearly all of the women mentioned being supported by at least 1 person, typically a family member, but also by people in the community or an employer. None of the women were totally isolated and unsupported. This may be a function of the method of recruitment, in that the whereabouts of the more isolated women might not have been be known by the health workers who participated in the study. Nonetheless, the fact that all women mentioned some type of support does indicate that they were not completely isolated. Third, the study found that once they were healed of their fistulas, girls and women generally reintegrated themselves back into their families and communities. Almost all the women mentioned that after repair they were able to perform domestic chores, and that their relationships with the community improved.
3.2. Study 2: Tanzania Fistula Survey 2001 [4] This survey was conducted in 2000 and 2001 in Tanzania by the Women’s Dignity Project and the Tanzania Ministry of Health.
S18 The purpose was to gather information on fistula repair and care from all public and mission hospitals in Tanzania; disseminate this information widely; identify major gaps in service delivery across the country; and begin organizing a referral system so that girls and women could access treatment. A simple, 1-page survey instrument was sent to the hospitals. It included questions on the approximate number of repairs done per year, locations from which many patients come, presence in the hospital of health care providers trained in fistula treatment, cost of treatment, availability of supplies and equipment for repairs, and recommendations for the prevention and management of fistula. The list of 161 hospitals on mainland Tanzania provided by the Ministry of Health included district, regional, and mission hospitals, but referral hospitals were also contacted. More than 85% of the hospitals responded to the survey. Fifty hospitals reported having performed fistula repairs, for a total of 712 repairs in the 2000–2001 reporting period [5]. The number of repairs performed across hospitals ranged considerably, from just 1 to 172. Most hospitals providing the service are situated around the perimeter of Tanzania, with many girls and women needing to travel more than 500 km to reach one of the major centers for fistula repair. The survey found that while 12 physicians in the country had received some form of training in fistula repair, the dependency on foreign visiting surgeons was high. Importantly, many respondents commented that it was difficult, if not impossible, for many girls and women to access treatment because of the cost and the lack of transportation. Following the survey, a map illustrating the location of hospitals providing repair and the type of provider (e.g., resident physician or visiting surgeon) was disseminated throughout the country. The information assisted health workers, NGOs, and others in referring women appropriately for fistula treatment. Recommendations of the study formed the basis of the National Fistula Program in Tanzania, launched in 2005. The program’s major objectives include: 1. Enabling local health care providers to treat and manage fistulas and prevent the condition 2. Ensuring that girls and women are able to access highquality fistula care in an efficient manner, and return to a life of dignity following treatment 3. Increasing public awareness and understanding of the condition, and the maternal mortality and morbidity that it can cause, to better mobilize action for fistula prevention and treatment, and for the social reintegration of affected women 4. Developing strategies to prevent fistulas and provide an effective “lens” onto maternal mortality and morbidity (MM&M) and the health of the poor through increased understanding of fistula at the family, community, and health systems levels 5. Building a partnership among government, nongovernmental actors, professionals, the media, and others to address fistula in the context of MM&M and the health needs of the poor The 2001 Survey was updated in 2005. The update produced a revised list of hospitals providing fistula repair.
M. Bangser The update also provided information on the particular institutions, such as local churches and peripheral health facilities that refer patients to hospitals for care. These findings helped establish a more formalized referral system for women with fistulas, now being piloted in 5 regions. Partners in the system are hospitals, peripheral-level health facilities, NGOs, and faith-based organizations.
, , 3.3. Study 3: women s and providers views of barriers to accessing high-quality maternity care [6] This qualitative study seeks to understand why low numbers of Tanzanian women are delivered at health facilities or by trained health workers despite the high numbers who receive antenatal care. The findings of the 2004–2005 Tanzania Demographic and Health Survey [7] confirm a disturbing trend for 3 important proxy indicators of maternal mortality in Tanzania: fewer than half of all pregnant women are delivered at a facility, fewer than half of all pregnant women are delivered by a skilled attendant, and only 3% of deliveries are by cesarean section. The study used semistructured interviews, group discussions, and case studies with women who had been recently delivered; health workers responsible for labor and delivery; and traditional birth attendants. The study was conducted in 3 districts of Tanzania and facilitated by the Ministry of Health. Women were asked questions on their choices regarding place of delivery, their perceptions of the choices other women make, the constraints they and other women faced in delivering with trained providers, and the quality of care they and other women received during childbirth in various settings. Health workers, including midwives, were likewise asked about their perceptions of why women make different choices regarding place of delivery; about the types and quality of labor and delivery services health workers are able to provide; and whether they felt they were working in an “enabling environment” to provide high-quality labor and delivery care. The preliminary review of the data suggests that women feel they have no choice but to be delivered at home because of distance, cost, and other factors limiting access to formal care; that women have a limited sense of entitlement to the free pregnancy and delivery services the government offers; that facilities lack supplies and equipment for delivery; and that health workers face poor working conditions, including low numbers and pay as well as a lack of training.
, 3.4. Study 4: Fair s Fair: Health Inequalities and Equity in Tanzania [8] The purpose of this study is to help explain patterns and causes of ill health among population subgroups in Tanzania, in order to improve priority setting and resource allocation in the health sector, including in under-resourced areas such as maternal health. The study analyzed key health variables to identify how much and why indicators differ across population subgroups. The Women’s Dignity Project was particularly interested in examining
Strengthening public health priority-setting through research differences in women’s effective access to health care services, i.e., differences in the actual utilization of services rather than differences in distance to a peripheral facility. The findings are important in shaping priority setting and resource allocation to basic and maternal health care in the country. The analysis looked at variations in health indicators, such as health status, mortality, and malnutrition, according to variables such as geographic location, poverty quintile, and educational attainment. Secondary data sources were used, including the 2004–2005 Tanzania Demographic and Health Survey [7], the 1999 Reproductive and Child Health Survey [9], the 2002 Population and Housing Census [10], sentinel site studies [11,12], and the 2001 Tanzania Household Budget Survey [13]. The study shows that health outcomes are worse for people living in poverty than for those from higher income groups. The greatest gaps are in maternal and reproductive health indicators, with especially large gaps between women from the highest and lowest educational levels. Part of the reason for the inequalities in people’s effective access to health care is distance to a health care facility, and this is clearly a greater problem for those living in poverty. The poor also experience differences in quality of care: where they receive it, who supplies it; and the way they are treated by providers. In relation to maternal health, findings showed that in all instances women from richer households consumed more of any given service than the poorest women. The differences are especially large in Tanzania for contraceptive use, skilled assistance at the time of delivery, availability of cesarean delivery, postnatal care, and use of insecticidetreated nets. There are substantial differences between wealth groups even in the services that are supposed to be near universal, such as vaccination. The distance that rural women must travel to reach a hospital where cesarean deliveries are performed is an impediment for those who risk obstructed labor. Cost remains a major barrier to accessing health care that disproportionately affects the poor. According to the Tanzania Demographic and Health Survey, “getting money for treatment” was the single greatest problem encountered by women needing health care.
4. Discussion Fistula formation and poor health are “markers” for inequities that undermine the capacity of girls and women to achieve good health and well-being after childbirth. Likewise, the health outcomes of the poor reflect the “structural violence” [14] that perpetuate the devastating conditions contributing to the unacceptably low health status of the most marginalized members of society. Public health priorities should focus on both the health conditions affecting poor women and marginalized people more generally, and the underlying inequities that threaten the health rights of the poor. Asha’s story, drawn from the study on Risk and Resilience: Obstetric Fistula in Tanzania illustrates the impact of these pervasive inequities on the health and well-being of women in poverty:
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Box 1 , Asha s story Asha lives in a small village where her husband works as a guard at the village government office, earning very little money. When Asha went into labor with her second child, her husband borrowed $6 from the village government in order to rent a wheelbarrow that could take Asha to a road. From , the main road, Asha s husband then found a car to drive them to the hospital, and this cost $60. Because he had no money, he had to hire the vehicle on credit. At the hospital, Asha got a cesarean section but the baby died. Asha developed a fistula. The bill for the cesarean section was $40, and in order to pay , this Asha s husband had to request more money from the village government. Their terms of the loan required him to work for free until his meager salary had paid off the $40 in full. This left the family without any income. The family struggled to help Asha stay clean, but the closest well is a six-hour walk away. Each time Asha used water to wash the urine from her clothes and body, she depleted the supply of water for her husband and daughter, and for the cooking and cleaning. Her husband pays 10 cents per day to get one bucket of water, and each bucket of water adds to the debt that the family has already accumulated. The owner of the vehicle that transported Asha to the hospital for delivery harassed the couple for money until Asha’s husband was forced to sell a plot of land to pay. He also had to sell five cows because the land was not enough to pay the debt. Friends gather together $15 to help pay off the debt and to take Asha to a hospital where she eventually got a fistula repair. While she is , healed, her family s financial situation is grave. Her husband owes $25 for the transportation and is still working for free to repay the hospital loan. Adapted from Faces of Dignity , Women s Dignity Project, 2003 Findings from the study on Fistula and Social Vulnerability have shown that fistula is a problem that affects young girls and older women alike. Fistula, and maternal mortality and morbidity, know no age distinction and health services must respond to needs across the age spectrum. Findings of the study differ significantly from the prevailing assumption that fistula is largely a problem concerning adolescent girls. The findings also challenge the prevailing notion that all girls and women living with fistulas are abandoned, shunned, and socially isolated from their families and communities. While many girls and women with fistulas have endured tremendous
S20 assaults to their health and dignity, and isolate themselves from community events, many also live with remarkable resilience and within their family structures. Public portraits of these girls and women must show the full range of their experiences-including their courage and social supports — to be factually correct, and to give a positive example of how families can rally around this devastating condition. And lastly, findings of the study indicate that once healed of their fistulas, girls and women often reintegrate themselves back into their families and communities. While those who are not healed may continue to experience sharp social isolation, it appears that a successful fistula repair enables a woman to return home and start her life anew. As the Tanzania Fistula Survey 2001 and its 2005 update show, simple data collection can identify systematically where fistula repair services are available, the training needs of physicians and nurses, and avenues to link girls and women having fistulas with available treatment. Data have provided the basis for the newly established National Fistula Program and its referral system. Health facilities, NGOs, and faithbased organizations now help girls and women reach hospitals providing repair, and assist with disseminating information on fistula and the health rights of the poor. The data have also supported a major public information campaign to disseminate information on the availability of fistula services through regional and national radio as well as in print. In addition, data from the survey and from the study on health inequalities have been used in advocacy efforts on a particular issue of health equity: the equitable deployment of health care workers to remote areas. The data illustrate the wide gaps in the allocation of health workers throughout the country, a key factor underlying fistula and maternal mortality. The study on Women’s and Providers’ Views of Barriers to Accessing High Quality Maternity Care feeds directly into current efforts to break the inertia surrounding maternal mortality and morbidity. Like other countries of Africa, Tanzania has made little progress, if any, to stem the tide of women dying in childbirth. The study identifies specific constraints that women face in accessing — or choosing to accessskilled attendance at delivery, and the constraints that health workers face in delivering quality care. The information will be used for policy and service delivery interventions, such as equitable deployment of skilled attendance for childbirth, and to reduce costs associated with delivery, minimize distance and transport obstacles, and significantly improve the quality of care provided. The last and broadest-reaching of the 4 studies: Fair’s Fair: Health Inequalities and Equity in Tanzania will advance the debate on the “haves” and “have-nots” in terms of health. The study’s findings on maternal health show that women from richer households consume more services than the poorest women, and that poorer, lesser-educated, and rural households use the available health care the least. These findings provide evidence and impetus to public health professionals, service managers, and service providers to re-equilibrate policies as well as financial and human resources and services in the interest of those in greatest need: women living in poverty. Mobilizing meaningful action for improved maternal health at the policy level and in the delivery of basic and maternity services could redress some
M. Bangser of these imbalances. In the short run, this would mean hiring and deploying health workers equitably, including for maternal health; this would also mean decreasing barriers such as difficult physical access, poor quality, and high cost. In the long run, however, change will require addressing the fundamental determinants of the inequalities, such as the educational level and nutritional status of poor women. Conflict of Interest None. Role of the funding source No funding sources were involved in this study.
Acknowledgements The Women’s Dignity Project extends its deep appreciation to the many girls and women who have shared their stories about living with an obstetric fistula. Thanks also go to our partner NGOs, hospitals, health workers, consultants, and others who have assisted Women’s Dignity Project in identifying strategies to address fistula and the health rights of the poor.
References [1] World Health Organization. Health dimensions of sex and reproduction: the global burden of disease. Geneva, Switzerland: WHO; 1998. p. 253. [2] Women’s Dignity Project. Faces of dignity. Tanzania: Dar es Salaam; 2003. p. 2–3. [3] This study is being conducted by the Women’s Dignity Project, EngenderHealth (USA), three NGOs/hospitals in Tanzania, and three NGOs/hospitals in Uganda. Funding is provided largely by the Department of International Development, London, UK. [4] This study was conducted in partnership with the Ministry of Health in Tanzania, and with funding from the United Nations Population Fund and The Ford Foundation. [5] Author’s note: in 2005, 1058 fistula repairs were done in Tanzania, marking significant progress in making treatment more available to girls and women living with the condition. [6] This study is being conducted in collaboration with CARE/Tanzania. [7] National Bureau of Statistics and Macro International: 2004/5 Tanzania Demographic and Health Survey. 2005. [8] This study was conducted in collaboration with the Ifakara Health Research and Development Centre, Tanzania. The author is Paul Smithson. [9] National Bureau of Statistics and Macro International: 1999 Tanzania Reproductive and Child Health Survey. 2000. [10] National Bureau of Statistics. National Population and Housing Census; 2002. [11] National Sentinel Surveillance System and Adult Morbidity and Mortality Project Working Paper No. 1, Ministry of health. 2001. [12] National Sentinel Surveillance System and Adult Morbidity and Mortality Project Working Paper No. 2, Ministry of health. 2002. [13] National Bureau of Statistics. Household budget survey 2000/ 01; 2002 [Location of study]. [14] Kim JY, Millen JV, Irwin A, Gershman J, editors. Dying for growth: global inequality and the health of the poor. Monroe, ME: Common Courage; 2000. p. 106.