Obstetric Fistula and Inequities in Maternal Health - UNFPA

Living T e s t i m o n yObstetric Fistula andInequities in Maternal Health

L i v i n g T e s t i m o n yObstetric Fistula andInequities in Maternal HealthPhoto credit: Lucian Read/WpN/On behalf of UNFPA

AcknowledgementsThis publication was prepared by Family Care International (FCI) in collaboration withthe United Nations Population Fund (UNFPA).The contributions of the following are gratefully acknowledged:Author: Debra A. Jones, FCIFCI Contributors: Ellen Brazier, Shafia Rashid, Ann Starrs, and Elizabeth WestleyUNFPA Contributors: Kate Ramsey, Yahya Kane, Ann Pettigrew Nunes, Arletty Pinel,Anjali Kaur, Saira Stewart, Julie Weber, Lydiah Kemunto Bosire,and Larisa JacobsonOther Contributors: Petrina Lee PoyProduction Management: Adrienne Atiles, Luz Barbosa and Virginia TaddoniDesign and Layout: Green Communication Design inc., Montreal, CanadaProofreading: Adrienne Atiles, Brian Jones, and Séverine Origny-FleishmanTranslation: Antler Translation Services, Inc., and Séverine Origny-FleishmanPhotographs: UNFPA and Campaign to End FistulaSincere gratitude also goes to the numerous UNFPA colleagues in the Country Offices,Country Support Teams and Technical Staff at UNFPA Headquarters, Fistula WorkingGroup, TSD Publication Review Committee, and UNFPA partners for country assessmentsfrom Bangladesh, Benin, Burkina Faso, Burundi, Cameroon, Central African Republic,Chad, Côte d’Ivoire, Democratic Republic of Congo, Djibouti, Equatorial Guinea, Eritrea,Ghana, Kenya, Liberia, Malawi, Mali, Mauritania, Mozambique, Niger, Nigeria, Rwanda,Sierra Leone, Somalia, Sudan, Tanzania, Timor Leste, Uganda, and Zambia.© 2007 UNFPA and Family Care International, Inc.To order additional copies or to convey questions or comments, please contact:publications@fcimail.org or fistulacampaign@unfpa.orgFor further information, please visit the following Websites:www.familycareintl.orgwww.unfpa.orgwww.EndFistula.org

Table of ContentsForeWORDExecutive Summary 1Introduction 3Obstetric Fistula 6Perspectives on Obstetric Fistula and Maternal Health 7Life with Obstetric Fistula 7Life after Fistula Treatment 8Family Members of Women Living with Obstetric Fistula 9Voices from the Community 11Traditional Birth Attendants 12Health Care Providers 13The Context in Which Obstetric Fistula Occurs 14Social and Cultural Context 14Political and Economic Situation 15Select Country Assessments: Key Findings 17Bangladesh 17Burkina Faso 18Cameroon 20Democratic Republic of Congo 21Eritrea 22Sudan 23Promising Practices 26Eritrea: Reintegration and Counselling 26Ethiopia: Model Fistula Hospital 26Malawi: Community Empowerment to Strengthen Health Care Provision 26Niger: Social Rehabilitation and Reintegration 27Sudan: Midwifery School System 27Obstetric Fistula: Strategic Recommendations 28Conclusions 31Endnotes 32Needs Assessment ReportsFigures and SidebarsIvinside back coverGlobal Advocacy for Safe Motherhoodinside front coverMap of Campaign to End Fistula 3Illustration of Obstetric Fistula 6Three Delays 8Female Genital Mutilation/Cutting 12

ForewordWomen who have endured an obstetric fistula are living testimony to the challenges of maternal health.Hearing their stories helps us to understand how to address these challenges more effectively.The persistence of fistula is an unacceptable reminder of the enormous inequities between rich and poornations, and between rich and poor women within nations, in access to and quality of reproductive healthcare. Fistula reveals how poverty and gender inequality limit women’s exercise of their reproductive rights.Complications related to pregnancy and childbirth are among the leading causes of death and disability forwomen of reproductive age in many parts of the developing world. More than half a million women diefrom pregnancy-related complications each year. Furthermore, an estimated 210 million women are leftwith disabilities, including obstetric fistula—perhaps the most severe childbirth-related injury due to itsdevastating mix of medical, social, and psychological consequences.This publication explores knowledge, attitudes, and perspectives on pregnancy, delivery, and fistula from31 country-level needs assessments conducted in 29 countries in the Campaign to End Fistula (see insideback cover for the complete list). Experiences of women living with obstetric fistula, their families, communitymembers, and health care providers are brought to light. This information represents important research onthe social, cultural, political, and economic dimensions of obstetric fistula, drawing attention to the factorsunderlying maternal death and disability.We hope this publication will serve as an advocacy tool to strengthen existing programmes and encouragefurther research on how to increase access to vital maternal health services, including fistula prevention andtreatment. We implore policy makers, programmers, and researchers to listen to these women’s voices andconsider the promising practices and strategic recommendations described herein.What we have learned so far can help point the way, but much more still needs to be done. We cannotafford to wait—the costs to women, communities, and health systems are simply too great to delay action.Too many of the world’s most disadvantaged and vulnerable women have suffered this preventable andtreatable condition in silence. Too many women are dying unnecessarily in childbirth. It is time to put anend to the injustice of fistula and maternal death.Thoraya Ahmed ObaidExecutive DirectorUnited Nations Population Fund UNFPA, theUnited Nations Population Fund, is an internationaldevelopment agency that promotes the right of everywoman, man, and child to enjoy a life of health andequal opportunity. UNFPA supports countries in usingpopulation data for policies and programmes to reducepoverty and to ensure that every pregnancy is wanted,every birth is safe, every young person is free of HIV/AIDS,and every girl and woman is treated with dignity andrespect. UNFPA and its partners launched the globalCampaign to End Fistula in 2003.Jill W. SheffieldPresidentFamily Care International The mission of Family CareInternational (FCI) is to ensure that women andadolescents have access to the high-quality informationand services they need to improve their sexual andreproductive health, experience safe pregnancy andchildbirth, and avoid unwanted pregnancy and HIVinfection. For more than 16 years, FCI served as thesecretariat of the Safe Motherhood Inter-Agency Groupand currently serves as co-chair of the Partnership forMaternal, Newborn and Child Health.IVLiving Testimony

Executive SummaryHere I am sitting waiting for God to dowhatever he wants to do with me.…I stay quiet and do not say anything.People offered to lend my husbandmoney so that I could get treated. Herefused, saying that he has other wives.Inspired by the many dedicated individuals andinstitutions working in this area, the Campaignseeks to eliminate obstetric fistula while raisingawareness about gaps in maternal health servicesand gender inequities that inhibit the exercise ofwomen’s rights. By late 2006, more than 40 countriesin Africa, the Arab states, and Asia were part of theCampaign to prevent fistula, treat affected women,and reintegrate women post-surgery.40-year-old Bissa woman,Burkina FasoThe death or disability of a girl or woman due tocomplications during childbirth is avoidable andunjust. More than 2 million women living withobstetric fistula provide living testimony to thisinjustice. The existence of this condition revealssocietal and institutional neglect of women. 2Women living with fistula are the survivors, yettheir lives are devastated and in most cases theirvoices have been silenced.Caused by obstructed or prolonged labour withoutskilled medical care, obstetric fistula results inserious physical as well as psychological effects.The newborn usually does not survive the trauma.Despite its devastating medical and social impact,obstetric fistula is not a public health priority.Women continue to suffer in silence and isolationeven though obstetric fistula is preventable andtreatable, even in resource-poor settings. Stateshave an obligation to provide adequate preventivecare during pregnancy and childbirth, fistulatreatment, and rehabilitative support.In 2002, UNFPA and EngenderHealth gatheredgroundbreaking data on obstetric fistula in ninecountries in sub-Saharan Africa. These initialfindings highlighted critical areas of need to lowerthe incidence of fistula and treat existing cases. 3In response, UNFPA and partners launched theCampaign to End Fistula in 2003.Photo credit: GMB Akash/Panos Pictures/On behalf of UNFPAObstetric Fistula and Inequities in Maternal Health

Photo credit: Micol Zarb/On behalf of UNFPATo date, 31 country-level needs assessments havebeen conducted in 29 countries 4 and many providenew insight into the social, cultural, and economicaspects of obstetric fistula. This publication aims toraise awareness about the underlying dimensions ofmaternal mortality and morbidity by reviewing thefindings of the 31 country-level assessments onobstetric fistula. Specifically, this publication:Highlights how perceptions, knowledge, andattitudes related to pregnancy and deliveryaffect maternal mortality and morbidity,including obstetric fistula;Emphasises how social norms and culturalpractices impede or facilitate access to sexualand reproductive health care services; andProvides policy, programming, and researchguidance to promote safe motherhood whileaddressing obstetric fistula.Across country assessments, the typical fistula patientwas young, developed the fistula during her firstpregnancy, and lived in a rural area. Additionally,obstetric fistula was observed among women whohad delivered four or more children. Many adolescentgirls and women living with fistula did not utilisehealth services because of their limited decisionmakingpower and attitudes and misperceptionsabout pregnancy and childbirth. Furthermore,political insecurity and economic instability impededtransportation and access to maternal health careservices. Finally, in most regions where women livedwith fistula, treatment services were minimal tononexistent.This publication includes strategic recommendationsfor policy makers, programmers, and researchers onthe social, cultural, political, and economic dimensionsof maternal health, as seen through the lens ofobstetric fistula. Recommendations to improvematernal health care include:Promote legislation and policies to reducematernal mortality and morbidity, and toaddress underlying sociocultural factors;Strengthen health system capacity to provideskilled maternity care that is accessible,affordable, and culturally acceptable;Strengthen health system capacity to manageobstetric fistula sensitively, ensuring that careand treatment are subsidised and accessible;Raise awareness on sexual and reproductivehealth and reproductive rights to addressobstetric fistula;Promote the empowerment and reintegrationof women into communities post-surgery;Involve women who have lived with fistula asequal participants in maternal health programmeplanning, implementation, and evaluation;Promote partnerships to share key lessonsand to catalyse collective action; andSupport research on obstetric fistula to improveunderstanding of the impact of maternalmorbidity and barriers to accessing vitalreproductive health services.Living Testimony

Introduction[Obstetric fistula] is a terrible problem.The behaviour of a community variesfrom one area to another, from oneethnic group to another. In some cases,the victims are obliged to isolatethemselves, deserted by their husbands.In other cases, they are accepted.Dr. El-Hadji Ousseynou Faye,Head of Maternal Health,SenegalGlobally, the burden of death and illness due topregnancy- and childbirth-related complications ismassive. Every minute one woman dies and another20 suffer from a devastating disability, includingobstetric fistula. Fistula is prevalent where maternalmortality is highest, especially where emergencyobstetric care, referral systems, and infrastructure arepoor. Exact prevalence rates are unknown, 5 yet it isgenerally accepted that a minimum of 2 million girlsand women live with untreated obstetric fistula, 6and at least 75,000 new cases occur each year. 7Moreover, estimates indicate that up to 90% or moreof the babies do not survive the traumatic labour.The last decade has seen some progress in reducingmaternal mortality in Asia, Latin America, andnorthern Africa. However, there was little or noimprovement in sub-Saharan Africa, where riskswere greatest for maternal death and illness andneonatal mortality. 8 A recent review of more than2,250 published studies on maternal mortalityrevealed a lack of research on obstructed labour,unsafe abortion, and haemorrhage in view of theirburden on maternal health. Furthermore, researchon the cultural and political determinants ofmaternal mortality was limited, 9 highlighting theneed to better understand critical underlying riskfactors for maternal mortality and morbidity—includingobstetric fistula—such as a girl’s or woman’s lowsocial status, limited access to health care,knowledge and perceptions about maternal health,sociopolitical context, cultural norms, and poverty. 10AFGHANISTANPAKISTANNEPALBANGLADESHINDIAMAURITANIAMALINIGERSENEGALCHADGAMBIABURKINASUDANFASOGUINEABENINTOGONIGERIASIERRA CÔTE GHANACENTRALLEONE D’IVOIREAFRICAN REPUBLICLIBERIACAMEROONEQUATORIALGUINEACONGODEMOCRATICREPUBLICOF CONGOERITREAETHIOPIAUGANDAKENYARWANDABURUNDIUNITEDREPUBLIC OFTANZANIADJIBOUTISOMALIAYEMENANGOLAZAMBIAMALAWIMOZAMBIQUEDEMOCRATICREPUBLIC OFTIMOR-LESTECaribbeanSOUTHAFRICACampaign to End Fistula CountriesHAITIObstetric Fistula and Inequities in Maternal Health

Since 2003, the global Campaign to End Fistula hasworked to reduce the incidence of obstetric fistulathrough advocacy, research, and programmeinterventions, and to improve and increase access totreatment services for women with obstetric fistula.The Campaign’s exploratory needs assessments shedlight on social, cultural, political, and economiccontexts in which fistula occurs and contribute to ourunderstanding of maternal mortality and morbidity.Data was gathered from key informants, serviceproviders, girls and women living with fistula, andcommunity members through interviews, surveys,focus groups, and document reviews.The assessments highlighted unique countryexperiences, common challenges, and successfulapproaches. However, more data needs to begathered regarding women whose fistulas havebeen treated, models of reintegration, health careprovider attitudes, and costs of fistula to familiesand the health care system. This data can help showthe role of provider attitudes in adolescent girls’and women’s access to vital maternal healthservices, determinants in the affordability of fistulatreatment, opportunities and challenges in life afterfistula treatment, and determinants of maternalhealth and economic well-being.This advocacy publication includes:An overview of the findings from 31 countrylevelneeds assessments conducted in Africa,Asia, and the Arab states from 2001 to 2006on the cultural, social, economic, and politicaldeterminants of fistula;Detailed findings from six select countries:Bangladesh, Burkina Faso, Cameroon,Democratic Republic of Congo, Eritrea,and Sudan;Promising practices; andStrategic recommendations for policy makers,programmers, and researchers as they relate tothe social, economic, and political contexts inwhich obstetric fistula occurs.Photo credit: GMB Akash/Panos Pictures/On behalf of UNFPALiving Testimony

Photo Credit: GMB Akash/Panos Pictures/On behalf of UNFPAObstetric Fistula and Inequities in Maternal Health

Obstetric FistulaI endured 5 days with delivery pains.I was finally transferred to the hospitaland the foetus was dead. After 3 weeks,I started to feel constant flows in myvagina, and the odour was very bad. Thesituation has persisted for 10 years.Leaking urine and faeces can lead to other medicalcomplications, including genital sores/ulcerations,dehydration, frequent infection, and kidney disease.Social isolation and stigma often lead to psychologicaltrauma, including depression, anxiety, and in somecases suicide. Since the effects of the fistula may resultin loss of financial support or inability to work, manywomen are pushed further into poverty. Ensuringfistula treatment services and psychosocial support forreintegration post-surgery is therefore imperative.26-year-old woman,Equatorial GuineaProlonged labour and obstructed labour are majorcauses of maternal mortality and morbidity such asobstetric fistula. They occur in approximately 5%of births, causing 8% of maternal deaths. Often,labour is prolonged when the mother’s pelvis is toosmall or the baby is too large for a vaginal delivery.Adolescent girls may be especially at risk forobstructed labour, as their pelvises may not befully developed. 11When adolescent girls and women experienceprolonged labour for as short as 24 hours and areunable to travel to a health facility for a Caesareansection, the compression of tissues between thebaby’s head and the woman’s pelvis cuts off bloodflow to the bladder and rectum. The tissue dieswithin 3–10 days, resulting in an opening, or fistula,between the vagina and the bladder and/or rectumand chronic incontinence for the woman. Severenerve damage often affects a woman’s ability towalk. 12,13 In up to 90% of cases, the baby is stillbornor dies within weeks.Other types of gynaecological fistula do exist andare usually the result of cervical cancer, radiationtherapy, or injuries resulting from surgery. Fistulamay also result from sexual violence, more oftenin conflict and post-conflict settings. 14 However,the vast majority of fistula globally are due toobstetric causes.The fact that obstetric fistula has been virtuallyeliminated in the developed world is a clear reminderthat the problem can be prevented through improvedaccess to high-quality maternal health services,including family planning, skilled delivery care,emergency obstetric care, and postnatal care.Moreover, the fact that the majority of cases occuramong young women and adolescent girls meansthat we need to help them to delay pregnancy andhave greater access to maternal health care.Fistula prevention, treatment, and reintegrationrequire consideration of the broader socioculturalfactors, such as low status of women, lack ofdecision-making autonomy, marriage and pregnancyat a young age, lack of knowledge about labourcomplications, and a culture of home birthing.Health system factors include insufficientemergency obstetric care and skilled attendants,and delayed or unavailable Caesarean sections.Living Testimony

Perspectives on Obstetric Fistula andMaternal HealthThere is no joy anymore in being withothers, loneliness takes over. You loseyour habits for cooking, visiting others -and all this makes me sad.Woman,Burkina FasoThis section presents the voices of adolescent girlsand women living with fistula, and their familymembers, communities, and health care providers.Information was gathered through interviews,focus groups, hospital chart reviews, and surveys.Respondents shared their perspectives on maternalhealth, life with obstetric fistula, the causes offistula, the context in which it occurred, treatment,and reintegration.Life withObstetric FistulaNobody wants to stay with me due to thesmell of urine. Even my husband sometimesblames me for my condition.22-year-old woman,BangladeshAcross the country assessments, the majority ofwomen interviewed had married young, lived inremote and low-resource areas, and had limitedaccess to obstetric care services. Most developedobstetric fistula during their first pregnancy, buta significant number, experienced fistula later inlife after previous vaginal deliveries. Some women,especially those living in remote areas, had nohealth care during pregnancy and had laboured athome. Distance, poor roads, and cost were notedas barriers to maternal health care in many ofthe assessments.Home deliveries with elder female relatives ortraditional birth attendants were a commontradition across countries. Family pressure washighlighted, especially in Kenya, Bangladesh, andBurkina Faso, as limiting utilisation of health services.In many countries, use of antenatal care wasassociated with bad luck and difficult deliverieswere linked with infidelity and witchcraft.Reactions and levels of support from family membersand husbands varied across the assessments. Womenand adolescents living with obstetric fistulafrequently described rejection by husbands andfamily members. Women reported being physicallyisolated from their families in West Darfur andmistreated by in-laws in Burkina Faso. In contrast,husbands continued to support their wives insome cases. For example, more than half of the71 women living with fistula interviewed in theCentral African Republic indicated that theirhusbands provided moral and financial support.I am distasteful in theeyes of others. It is God’s will.48-year-old woman,MaliAcross country assessments, many women livingwith fistula viewed their condition as the will ofGod or even a punishment from God. Women toldof living on the margins of society due to theirown self-imposed isolation because of the smell,embarrassment, and fear of ostracism from thecommunity. Women also spoke of their inability topractice any type of economic activity and hencetheir financial dependence on others. Some womenin Mali were excluded from religious activities asthey were perceived as unclean. Fistula patients inBangladesh described being given less priority foradmission due to limited beds and reproach relatedto the smell of urine.Obstetric Fistula and Inequities in Maternal Health

Everyone has rejected me.Cure me or kill me!Woman,BangladeshAccess to treatment was closely tied to affordabilityof surgery, financial means, geographic access, andknowledge on treatment. Obstacles to treatmentincluded the cost of surgery (ranging from US$20to US$400) plus transport and lodging. Treatmentwas not affordable for numerous women in allcountries. Many accepted their condition as a curse.Conversely, some women received financial assistancefrom their biological family and friends. In Tanzania,women reported travelling 500 kilometres or more toreach a major fistula centre. Distances were probablytoo great financially and socially for many others.Three Delays During aProlonged Labour thatImpede Women’s Accessto Quality Care:• Decision to seek care from a skilledattendant: Cultural preference forhome delivery, limited knowledgeof maternal health, and limitedtransport delayed decisions to seekcare. Frequently, family membersdetermined when and where to seekcare, often in conflict with the needsand wishes of the woman.• Reaching a health care facility:Even when a decision to seek carehad been made, poor roads, the highcost of transportation, and longdistances delayed women’s access tohealth facilities and emergency care.• Receiving emergency obstetric careat the facility: Once some womenreached a health facility, skilledpersonnel and/or supplies werelacking and emergency obstetriccare was delayed.The assessments highlighted the need for moreadvocacy and education regarding treatment andreintegration programmes. A 26-year-old Sudanesewoman was studying midwifery “in order to assistwomen in rural areas not to go through [her]personal experience”. She gives testimony to how awoman who has lived with fistula can beempowered to be a catalyst for social change.Thanks to a scholarship from the Geneina MidwiferySchool in the Sudan, she is embarking on a careerto promote maternal health and to fight againstobstetric fistula.Life after Fistula TreatmentWhen I returned to the village, thosewho did not believe that I was healedwere embarrassed when I saw them.I have become a person again.48-year-old woman,MaliLimited information is available on women’s lives afterfistula treatment. Women in Mozambique spoke ofgreat pressure to become pregnant again after surgicaltreatment. More than half of the 568 women seekingtreatment at two national hospitals in Mali from 2000to 2002 were no longer sexually active. In Eritrea,women who had undergone surgical treatmentdescribed sex as improved but still painful. Those whohad refrained from sexual intercourse lacked thedesire or interest in sex. Six women in Eritrea stillexperienced leakage after surgery and felt isolated.I did not know that one dayI would be like other women,because the problem was big.48-year-old woman,TanzaniaReintegration care was not commonly availableat health facilities providing fistula treatment.Assessments recommended skills training and thecreation of job opportunities for fistula patients aftera successful treatment to facilitate reintegration intosociety and a productive and independent life.Living Testimony

Photo credit: Sven Torfinn/Panos Pictures/On behalf of UNFPAIn some settings, women had experienced suchsevere stigma that they were reluctant to returnhome and were living in or near the hospital wherethey received treatment. But successful treatmentdrastically changed the lives of many women aswell. In a study conducted by the Women’s DignityProject in Tanzania, nearly all women who hadundergone successful fistula treatment indicated thatthey no longer felt isolated from the community.Many described feeling like a “normal humanbeing”, and were able to return to their ordinary lives.The majority indicated that they were able to engagein economic activities and perform daily chores withlittle difficulty. Self-esteem improved markedly formany women after treatment because they couldnow attend community and family gatherings.I want to start a new life.I want to have friends.I want to share my story.32-year-old woman,EritreaIn many studies, treated fistula patients andtheir families were highlighted as potentialcommunity-level educators for the preventionand treatment of obstetric fistula and promotersof maternal health and safe delivery. For example,after receiving treatment, four Eritrean womenreported advising community members on safemotherhood practices and prevention of obstetriccomplications. A 19-year-old Eritrean woman washappy with the outcome of her fistula operationand noted that she would recommend the surgeryto other women in her village, advising them notto delay treatment.Family Members of WomenLiving with Obstetric FistulaIf people are aware, they can preventfistula and solve this problem. Beinginformed, they have better self-esteem.Father of an 18-year-old womanliving with fistula,EritreaAcross most countries reviewed, family membersplayed a critical role in determining access toessential obstetric care—in some cases elder women,and in other cases husbands. In many situations,family members described delivery as a privateaffair for only close female relatives. Cultural normsand a lack of confidence in the health sector keptmany women from receiving care before, during,and after birth. Strong preference for home deliveryfor first births was cited across many of the countries.Decisions about when and where to seek care weremade by male elders in Malawi, by female elders inEritrea, and by mothers-in-law, husbands, and otherfamily members in Burkina Faso, Bangladesh, andGhana. Such family decisions were often in conflictwith the pregnant woman’s wishes and health needs.A woman’s primary doctor is first andforemost her husband. It is necessarythat the husband support his wife beforeor after awareness of the condition.Man,Côte d’IvoireObstetric Fistula and Inequities in Maternal Health

Family consultations often created long delays inseeking assistance from a health facility whenbirthing complications arose. In many countries,a woman’s unfaithfulness to her husband wasconsidered the cause of a difficult labour, thusinfluencing decisions to transport her to emergencyobstetric care. Nigerian men interviewed did notwant women to have antenatal care for fear ofHIV testing. In Burkina Faso, men stated that theywere not involved in pregnancy and childbirthand admitted to having no knowledge of maternalhealth, but were responsible for making decisionswhen there was a complication.Most husbands interviewed in Bangladesh indicatedthat their wives no longer had interest in sexualintercourse after the fistula occurred. In Bangladesh,Mozambique, and the Central African Republic, somehusbands had remarried after the fistula occurredand the wives affected by fistula remained in thehousehold as servants. Some women said that theyhad failed in their duties as sexual partners.I am embarrassed when my friendscome by. If she passes next to them,I can tell that they are upset by theodour. I am really tired by all of this.54-year-old man, MaliA 52-year-old husband described his hopes for hiswife’s fistula treatment by saying, “I will be born fora second time. She will be born for a second time.She will socialise. She will go to town. She will visither brother.”Photo credit: Lucian Read/WpN/On behalf of UNFPA10Living Testimony

Voices from the CommunityUsually the woman provokes this.When she leaves her husband and hassexual relations with another man, ithappens that her husband will cast aspell on her and she will have a fistula.Elderly woman,Burkina FasoThe causes and treatment of obstetric fistulawere not well known within most communities,especially given its hidden nature, and thecondition was shrouded in a complex web ofmisperceptions. Across country assessments, manycommunity members linked difficult labour andfistula to a spell cast by someone offended bythe woman or as a punishment for the woman’sinfidelity. In Côte d’Ivoire, community membersbelieved that obstetric fistula was due tosupernatural causes or promiscuity. Intervieweesin Burkina Faso linked obstetric fistula to adulteryand to the “evil eye”.Fistula occurs when the woman eatsfood that is not good for her when sheis pregnant. During delivery, the childis so big that it tears the mother.Woman,CameroonFocus group participants in Côte d’Ivoire displayedattitudes of rejection and discrimination towardswomen living with fistula. Community assessmentsin Kenya and Tanzania indicated that women whogave birth by Caesarean section or had obstetricfistula were not womanly. Sometimes the veryidioms used to describe this condition revealprejudices and misunderstanding. For example,in Mali obstetric fistula was described as “a womanwho becomes silent when the urine starts to flow”and “a wish come true from a co-wife in apolygamous marriage”. In Burkina Faso, womenliving with fistula were described as “the womanruined by birth” and punished by the fistula.In contrast, in select communities in Kenyaand Cameroon, assessments showed higher levelsof community support and sympathy for thiscondition. In other countries, a number ofcommunity-based organisations were developingreintegration and counselling programmes withlimited resources. In West Darfur, these includedsocial and psychological support as part of thetreatment process.Obstetric Fistula and Inequities in Maternal Health 11

Traditional Birth AttendantsThis is not a good illness.It is a shameful illness… it ismore than AIDS. It is death.Traditional birth attendant,Côte d’IvoireLike other community members, some traditionalbirth attendants indicated that difficult labour iscaused by conjugal infidelity or doing somethingthat is prohibited. They believed that if a womanadmits the “truth”, her labour will be eased. Healersin Benin described helping women living withfistula to overcome their “curse”. In Mali, traditionalFemale Genital Mutilation/Cutting (FGM/FGC)Various forms of FGM/FGC arepracticed in many of the countrieshighlighted in this report, includingEritrea, Mali, Djibouti, Somalia, Sudan,and others. FGM/FGC consists ofcutting away part or all of the femaleclitoris, labia majora, and labia minora.With infibulation, the clitoris and partof the labia majora and minora areexcised. The remaining parts of thevulva are sewn or pinned together,leaving only a small opening for thepassage of urine, menstrual flow, andsexual intercourse.Some types of FGM/FGC, particularlyinfibulation, may be correlated withprolonged, obstructed labour, whichin cases where timely obstetric careis not provided could result in obstetricfistula. A 2006 WHO study foundincreased risk of obstetric complicationswith certain types of FGM/FGC. 15birth attendants believed that fistula occurs when apregnant woman consumes sweet foods or certaingrains such as rice or small millet. In other countries,traditional healers cited cervical cancer or a tearcaused by the baby’s hair as possible causes ofobstetric fistula.Community members in Burkina Faso indicated thattraditional birth attendants often prolonged labourand delayed access to a health facility by trying toextract the baby or shift its position. Communitymembers in Niger described how traditional birthattendants dangerously pressed their elbows orknees on a woman’s belly, trying to speed updelivery. Additionally, community membersdescribed how traditional birth attendants helda pregnant woman upside down precariouslyand shook her in the hope of repositioning abreech presentation.The results of [pregnancy] management byTBAs are disastrous due to the delays.They [wait] too long, do not know where tostart, and do not even know where to stop.Health care provider,KenyaTraditional birth attendants in Bangladesh andBurkina Faso revealed limited knowledge of fistulaand admitted that they were not capable of treatingfistula. In several country studies, women and theirfamilies were stripped of their assets by traditionalhealers who had promised to cure the fistula butwere not able to do so.When asked what steps are needed to solve thefistula problem, one traditional birth attendant inCôte d’Ivoire stated, “You have to create awareness,you have to tell everybody.”12Living Testimony

Health Care ProvidersThe existence of fistula is the barometerof maternal health in the country. If yearby year fistula decreases, we know thatmaternal health is improving.Dr. Kalilou Ouattara,fistula surgeon, MaliHealth care providers in general noted a lack ofawareness among community members on thecauses and consequences of obstetric fistula. Inparticular, providers noted contributing factors suchas the low status of women, limited knowledgeof the consequences of prolonged labour, earlychildbearing, and few female health care providers.According to health professionals interviewed inCôte D’Ivoire and Sudan, fistula occurs almostexclusively in women delivering at home with atraditional birth attendant.The reluctance to seek out a health care providerduring pregnancy and labour was frequently due tothe lack of obstetric services in the regions wherewomen lived. Appropriate medical attention wasoften lacking at facilities, and women did not getthe quality care they needed, especially in cases ofemergency. For example, health care providersacross countries and regions noted an insufficientnumber of qualified personnel attending deliveries.OB/GYNs have shown little interestin learning how to perform fistularepairs. Even providers who havethe skills to do simple repairs refuse.One probable reason is stigma.Health care provider,MozambiqueFew specialist surgeons or obstetric gynaecologistswere identified to be trained in fistula surgery inmost countries. Many delivery personnel interviewedhad no knowledge of obstetric fistula. Limitedopportunities and incentives existed for training infistula detection and treatment. Few local physiciansor visiting expatriate doctors performed fistulasurgeries, and most treatment facilities lackedbasic equipment.Photo credit: Lucian/WpN/On behalf of UNFPAInformation about fistula and timely referrals werefound to be lacking in health facilities in manycountries. Women in Eritrea noticed the fistulaproblem while still in the hospital, but received noinformation about treatment. In Zambia, womenliving with fistula were referred to hospitals that didnot offer treatment. Health providers in Bangladeshsaid that patients lacked information on theavailability of fistula treatment services. Even freeservices were not sufficient for the poorest patientsin Bangladesh, as they could not afford medicine,transportation, food, and accommodations.Some women travelled great distances and evenacross national borders to receive treatment.District administrators in Benin noted that womenseek treatment in Niger, Nigeria, or Togo tomaintain their anonymity. In Benin, fistula carewas described as a luxury surgery for a social crisis.Hospital providers in Burkina Faso indicated thatwomen delayed seeking treatment with a healthprofessional or even going to a health facility dueto a lack of financial resources. Few telephonesand limited ambulance service made referrals fortreatment difficult in many countries.Obstetric Fistula and Inequities in Maternal Health 13

The Context in Which Obstetric Fistula OccursBecause of the cultural requirement todeliver the first baby at home, Chepchumba…aged 14 laboured at home with thetraditional birth attendant [for] 2 days.…They walked … another 2 days to thehospital … and delivered a stillbirth and …developed sepsis and [fistula].Health care provider,KenyaThis overview examines the context in which fistulaoccurs, including social and cultural norms, thepolitical setting, and the economic situation thatoften define women’s lives. A girl’s or woman’sbackground and her role in her environmentinfluence her sexual and reproductive healthoutcomes, including her risk for obstetric fistula.Photo credit: Lucian Read/WpN/On behalf of UNFPASocial and Cultural ContextCultural beliefs and social values preventedadolescent girls and women from making decisionsabout their own bodies as well as their health in allcountries. Generally, women living with fistula hadlow literacy skills, low status in the family, and fewyears of schooling. Knowledge regarding familyplanning and safe motherhood was often limitedand access to contraceptives restricted.I married when I was 14 years old.My family did not discuss with me the agewhen I marry and who I marry because awoman has no opinion in such matters.26-year-old woman,SudanAcross assessments, large proportions of womendelivered at home with extremely low rates ofCaesarean births in rural areas. Among the womenwho gave birth at home, many were assisted byfemale family members or traditional birth attendantswith no formal training. When complications aroseduring pregnancy, access to necessary obstetric carewas often avoided or delayed due to family pressuresfor home deliveries and misperceptions of thecauses of complications.In many assessments, child marriage and earlychildbearing were the norm and increasedvulnerability by contributing to gender inequitiesin education, work, and decision-making. Girls weremarried at their first menstrual flow (10 to 15 yearsold) in numerous countries, and as young as age 9in Nigeria. These adolescent girls often had lessaccess to reproductive health information andservices, as well as contraceptives. Conversely, wherecases of fistula were noted among older womenwith children, pregnancies were not well spacedand high fertility rates were prevalent.14Living Testimony

Political and EconomicSituationThe doctors [told] my husband totake me to Ouagadougou. Therewas no money. That is why thisthing dragged on for 21 years.50-year-old woman,Burkina FasoPoverty and gender inequality were evidentthroughout the assessments. The data illuminatedgrave disparities in the quality of life betweenpoorer and wealthier women. Poverty andwomen’s status had a negative impact on accessto family planning and skilled care, as well asmaternal health outcomes. Research findingsshowed that most women who developed fistulatended to live in rural, low-resource areas withlimited access to health facilities that might offerhigh-quality antenatal and delivery care. Longdistances to health facilities and a lack ofresources added to delays in getting quality carein the case of complications during labour.The security situation affected themovements of vehicles to and fromlocalities and thus affected thetraditional referral help forclients of obstructed labour.Dr. Salih, fistula surgeon,West Darfur, SudanSeveral countries were in conflict or post-conflictsituations or had been affected by civil war inneighbouring countries, including Central AfricanRepublic, Chad, Côte d’Ivoire, Sierra Leone, Somalia,Sudan, Democratic Republic of Congo, and Uganda.A country’s political instability contributed to theprecarious health of its population. Political unrestreduced financial resources for health services,destroyed the health infrastructure, and contributedPhoto Credit: GMB Akash/Panos/On behalf of UNFPAto high maternal and infant mortality andmorbidity. Insecurity in conflict zones madetransportation to health facilities difficult.Destruction of roads impeded the distribution offood, medicine, and supplies. In some cases heavyfighting had destroyed clinics and electrical andwater systems.Obstetric Fistula and Inequities in Maternal Health 15

16Photo Credit: GMB Akash/Panos Pictures//On behalf of UNFPALiving Testimony

Select Country Assessments: Key FindingsIf my three girls were boys … theywould carry me to Ouagadougouso that I could get treated.40-year-old woman,Burkina FasoCountry-level needs assessments provide importantlessons learned and strategic recommendations forfuture policy, programming, and research. This sectionhighlights the methodologies utilised and the majorfindings from six select countries: Bangladesh,Burkina Faso, Cameroon, Democratic Republic ofCongo, Eritrea, and Sudan.BangladeshIt is difficult to continue work anddo other things. White discharge,blisters, and itching are all disturbing.22-year-old woman,BangladeshIn Bangladesh, more than 40% of people live inpoverty and the status of women is low. Theaverage age of marriage is 15 years old, andmotherhood and early childbirth are consideredextremely important cultural obligations. Mostpregnant women do not receive antenatal care(63%) and most births occur at home (92%),primarily with the assistance of untrainedtraditional birth attendants, relatives,or friends. In this context, the underlying factorsmake the likelihood of fistula high. According to anational study, it is estimated that more than416,000 women live with fistula. 16From July to September 2003, EngenderHealth andUNFPA conducted an analysis of obstetric fistulain Bangladesh, including a literature review andqualitative research. In-depth interviews wereconducted with fistula patients (132), relatives/caregivers (72), service providers (30), and policymakers to assess the overall situation of fistula inBangladesh. The study examined individual, familial,and socioeconomic risk factors of obstetric fistula,and challenges in providing care and rehabilitation.Researchers highlighted the grave need for raisingawareness at the community level on potentiallabour complications and emergencies.Furthermore, the study revealed that significantnumbers of women are unaware of fistula treatmentpossibilities.More than half of the fistula patients interviewed inBangladesh had developed obstetric fistula as anoutcome of their first pregnancy (54%). The majorityexperienced prolonged labour (72%) during a homedelivery (68%). All had knowledge of antenatal care,but more than half were not comfortable using thehealth facility due to family objections, lack of privacy,and discomfort with male practitioners. Most of thefistula patients interviewed were illiterate (68%),likely contributing to misconceptions andsuperstitions about pregnancy and birth.Prevention and managementof fistula casesService providers remarked that it is critical that“the [health] care system be more responsive to theprevention and management of fistula cases.” Theutilisation of antenatal care was very low acrossBangladesh. Most fistula patients had limitedunderstanding of potential labour complicationsand obstetric emergencies. Researchers indicatedthat safe delivery would require that doctors atlocal and district levels have appropriate knowledgeand training in the management of deliverycomplications, the early management of obstetricfistula, and the capacity to refer fistula cases todistrict or university hospitals that providetreatment. Findings emphasised the need to addressstigma and discrimination because health facilitiesgave low priority for admission to fistula patients.Obstetric Fistula and Inequities in Maternal Health 17

Barriers to and facilitatorsof treatmentTwelve out of 27 women had lived with fistula formore than 10 years, largely due to challenges inovercoming barriers to access and treatment.Interviewees described embarrassment in discussingthe topic, lack of funds, no caregiver, distance fromthe health facility, and lack of knowledge on fistulaand treatment. Interestingly, having lived withfistula for years, several women finally had soughttreatment because the constant urination hadworsened and they were uncomfortable attendingreligious gatherings.Underlying factorsThe role of gender affects decision-making powerand health choices for women. Men who areeducated regarding reproductive health issuesare more likely to be supportive during pregnancyand make better health decisions. Researchersrecommended sensitising men on reproductivehealth and the importance of supportive,responsible behaviour among men—even fromadolescence when adult behaviour patterns areformed. Researchers noted that women were notrecognised as equal partners in relationships andmarriage in Bangladeshi society. Husbands andfemale elders were primary decision makersregarding access to health facilities and emergencyobstetric care, often restricting women’s access.Health providers described how the prevailing cultureattributed difficult labour to a woman’s unfaithfulness.Women living with fistula experienced disregard andmistreatment from husbands and in-laws during andafter a problematic delivery. One doctor noted that in a30-year practice only one husband had accompaniedhis wife for the treatment of fistula. In contrast tothe health providers, the women themselves did notmention social isolation or mistreatment by theirhusbands, despite more than half being separated,divorced, or widowed. Women interviewees indicatedthat they were no longer of use to their husbandsas a sexual partner. In fact, many accepted a shiftwithin the household from wife to maid as theirhusbands took on another spouse.Burkina FasoEverybody says it is because I committedadultery that I have fistula. Some makefun of me. In this type of situation, canI continue to go anywhere?46-year-old woman,Burkina FasoMaternal and child mortality rates in Burkina Fasoare among the highest globally. Estimates of maternaldeaths range from 484 to 1,400 deaths per 100,000live births according to the Demographic andHealth Surveys from 1998/1999. The same datashows that 39% of pregnant women receive noantenatal care, and births are attended primarilyby traditional birth attendants (42%), healthpersonnel (31%), and family members (19.8%).Two qualitative research assessments wereconducted in three health regions in Burkina Fasoin 2004. Twenty health agents, 24 key stakeholders/community leaders, and 4 fistula survivors ineach of three districts (12 women total) wereinterviewed. Twelve focus group discussions wereheld in each district with men, young women, andolder women. In addition, a retrospective reviewof hospital registers was carried out in 2004 in allhospital facilities in Burkina Faso (n = 347). Theaverage age of fistula patients was 28 and almosthalf (49%) of patients sought treatment within ayear. Among those with children, the mediannumber of live births before the fistula occurredwas two. Patients were in monogamous (47%)and polygamous (37%) marriages.Perceptions of the causesof fistulaGenerally, the respondents attributed fistulaoccurrence to punishment for bad behaviour. Inaddition, antenatal care is believed to bring oncomplications during delivery. However, those wholinked fistula with pregnancy often mentioned culturalfactors, such as early marriage, early sexual activityand early pregnancy, female genital mutilation/cutting, and traditional birth attendants’ practices.18Living Testimony

Intergenerational differences in knowledgeregarding causes of prolonged labour and risks offistula were evident. Young women had greaterawareness of fistula than older women. Youngerwomen made a link between childbirth and theonset of the fistula. Some said that fistula was dueto a tear during childbirth, the duration of labour,and the size of the baby. Older women interviewedsaid that a woman with fistula provoked her situation.Only one-third of the ninety men interviewed atthe community level knew about fistula.professionals was the only way to resolve theproblem. Even with this confession, none of thetraditional healers would admit to the women thatthey were incapable of dealing with their condition.Traditional versus moderntreatmentMost women living with fistula, followingcommunity customs, first sought treatment with atraditional healer. This was due in part to limitedfinancial resources and women’s dependence ontheir husbands and mothers-in-law. Thesetreatments, albeit quite costly, never produced thedesired results. Many women declared that theyreceived traditional treatments in vain for manyyears. After these unsuccessful attempts, somesought modern treatment.Researchers noted that younger women and somemen had greater confidence in professional healthcare providers. Seeking professional treatment waslinked to financial autonomy, accessibility oftreatment, and information about treatmentpossibilities. Only a tiny proportion of women livingwith fistula had access to information concerningtreatment. Overall, women who had undergonesurgery for fistula constituted a very small minorityin Burkina Faso. The community had littleknowledge and lacked the means to take care offistula cases. Sadly, many women were abandonedand left to their own means.Over half of the 24 traditional healers interviewedmistook fistula for urinary incontinence. Thehealers admitted that they were not capable oftreating fistula with their potions, nor with theirphysical treatments. They considered the illness tobe linked to a trauma, a tear, which could only behealed by suture. Almost all healers affirmed thatsurgery performed in a health facility by healthPhoto credit: Lucian Read/WpN/On behalf of UNFPAObstetric Fistula and Inequities in Maternal Health 19

CameroonThe traditional birth attendants say to becalm and wait it out … and in the meantime,a complication can develop. But at thehospital … well, they know better.Woman,CameroonCameroon’s population is 16.3 million and growing.Seven percent of women of reproductive age usemodern contraceptives, and women have an averageof five children. Slightly more than half (54%)of deliveries occur in a health facility. Amongthose women who give birth at home, most areassisted by a traditional birth attendant. Theestimated maternal mortality ratio ranges from430 to 1,100 deaths per 100,000 live births.In 2004, a descriptive exploratory survey wasconducted on obstetric fistula in 50 health facilitiesin two provinces of northern Cameroon. Womenliving with fistula (63) and traditional birthattendants (101) were interviewed, and focusgroups (22) were conducted with men and womenof reproductive age. Most women who developedfistula had been in labour, at home, for more than24 hours with only a traditional birth attendant.Reluctance to seek health careAmong women who were living with or had livedwith fistula, use of antenatal care was limited.Reluctance to seek out health care services was dueto lack of money, distance from the health facility,and refusal of the husband. In general, womenliving with fistula and community members notedthat emergency obstetric services were not availablein their region. Community members felt that healthfacilities offered limited emergency services and didnot have proper equipment or adequate care formothers and newborns. Women relied on traditionalbirth attendants during delivery and sought outprofessional maternity care only for complications.Interestingly, health facilities had greater resourcesthan was perceived by the community. A review ofhealth facilities found that district and provincialhospitals had functional operating theatres with thenecessary equipment to handle surgery, includingCaesarean-sections. The majority of health facilities(78%) had a referral system with appropriatelogistics including either a vehicle or easy accessto hired transportation.Use of traditional birthattendantsMost traditional birth attendants were elder womenwho had resided in the community for at least20 years. In general, these women were illiterate,and only half had received any type of formaltraining. The traditional birth attendantsinterviewed believed that they were highly soliciteddue to their quality services, their good childbirthskills, and their low-cost or free services. Duringthe course of discussion with the traditional birthattendants, nearly all affirmed that they referredtheir patients to a health facility, be it a healthcentre or a district hospital, if they wereexperiencing a difficult labour. When questionedabout the nature of a difficult labour, thetraditional birth attendants cited prolonged labour,maternal exhaustion, and abnormal presentationof the foetus.Community members highlighted reasons for usinga traditional birth attendant. Lack of money andthe long distance made health facility accessdifficult. The traditional birth attendant was oftenknown to the family. Some community membersstated that health facilities did not have properequipment for women in labour and that healthproviders needed improved communication skills.Some husbands objected to male health providersseeing their spouses unclothed.Conversely, some community members accused thetraditional birth attendants of being responsiblefor certain avoidable complications. Intervieweesindicated that traditional birth attendants did noteasily accept that a labour complication mightneed professional assistance. Nevertheless,traditional birth attendants hold a place ofprominence in the community with regard topregnancy and childbirth.20Living Testimony

Democratic Republic of CongoIn 2000, most people did not want tohear about vaginal repair.… Now womenunderstand that if they do not talk aboutit, they could be marginalised … and maydie of fistula. It is better to talk about itso they can be helped.Dr. Mukwege,Panzi Hospital, DRCThe Democratic Republic of Congo (DRC) has a wealthof natural resources, yet its people are among thepoorest in the world. From 1998 to 2003, the DRCwas in a state of civil conflict and violence thatdestroyed the country’s social and economicinfrastructures. This period was characterised by themassive and systematic rape of girls and women asa weapon of war. Maternal mortality (930–3,000per 100,000 live births, depending on the region),infant mortality (115 per 1,000 live births), childmortality (204 per 1,000 live births), and sexualviolence are on the rise, especially in war-torn areas.A study conducted by the Ministry of Health andUNFPA in six provinces found that fistula is not wellknown. Approximately half of the female focusgroup participants were aware of fistula comparedto 25% of the men. Men stated that socioculturalbarriers prevented them from beinginvolved in their spouses’ healthmatters even though they wereresponsible for the social welfare oftheir families. It is local custom thatmen do not communicate often withtheir spouses. According to one maninterviewed, “when they see youchatting with your wife, everyonecomes around to stare at you.”Pregnancy and childbirth aremanaged primarily by elder women.Men are consulted when there arecomplications, but admitted to beingignorant on maternal health mattersand unable to recognise dangerouscomplications in pregnancyand labour.Traumatic fistulaFourteen percent of the 432 fistula cases found insix provinces were the result of traumatic causes.Traumatic fistula is caused by direct gynaecologictrauma, such as violent rape, mass rape, and theinsertion of objects into a woman’s vagina (gunbarrels, bottles, sticks). Girls and women of all agescan be affected. Eighty percent of the 61 traumaticcases identified in this study were raped at leastthree times during the same episode by as many asfour aggressors, mainly men in uniform. In somecases, objects such as iron batons, bayonets, andsticks were used to rape the women. In a few cases,guns were fired into the vagina. Many women withtraumatic fistula do not report the incident for fearof reprisals from their aggressors and stigma withinthe community.Panzi Hospital in Bakuvu received 10,624 rapesurvivors from 1999 to 2006, 1,225 of whomreceived fistula surgery. 17 HEAL Africa Hospital inGoma has received over 3,550 rape survivors andperformed 600 fistula surgeries (68% for traumaticfistula) since its inception in 2003. Administratorsat both hospitals acknowledge that women withtraumatic fistula need comprehensive psychologicaltreatment and job skills training in addition to surgicalcare, but are challenged by the time required.Photo credit: Sven Torfinn Panos Pictures/ On behalf of UNFPAObstetric Fistula and Inequities in Maternal Health 21

Treatment andpsychosocial careThe HEAL Africa Hospital, formerly Doctors on Callfor Service (DOCS), identifies women and girls whohave been raped or who have fistula, and offersmedical treatment and psychosocial care. A networkof local counsellors refers them to appropriate care.The goal of the programme is to enable the womenand girls to enter into a healing process, and supportthem as they re-enter society as productive andhealed people.Women who have “graduated” from theorganisation’s Heal My People programme havereceived counselling as well as training in familymediation, and have learned facilitation techniquesto promote peace with women from various ethicgroups, often from the group that committed thesexual violence. This is an important first step in theprocess of conflict resolution. They have learnednew skills, which they bring back to their villagesand may have taught their skills to other women.EritreaI sleep in a separate bed from my husband.My husband does not complain.I don’t feel comfortable having sex.I refuse my husband sometimes.32-year-old woman, motherof two, living with fistulafor 17 years, EritreaAfter years of conflict over the border with Ethiopia,severe draught, and food shortages, Eritrea strugglesto reconstruct social services and economic stabilityand to reintegrate displaced populations. With apopulation of 4.4 million, Eritrea has a moderncontraceptive prevalence of 5.1%. The total fertilityrate has declined to 5.4, though the ideal family sizeis slightly higher (5.8). Maternal mortality is one ofthe highest globally (890 deaths per 100,000 livebirths), with 49% of pregnant women seekingantenatal care and 21% of births attended bya skilled attendant.A 2003 study supported by the Eritrean Ministryof Health and UNFPA documented the state ofobstetric fistula in six regions. Eighty women livingwith fistula were recruited through the radio andinterviewed. Seven focus groups were conductedwith 78 traditional birth attendants, communityleaders, religious leaders, and health workers. Asecond study conducted with Stanford Universityinterviewed new (11) and returning (15) fistulapatients and their family members at MassawaHospital during a surgical mission in late 2004.The majority (56%) of fistula patients interviewedwere 20 years old or younger when the fistulaoccurred. Most women had a healthy pregnancybefore the birth that led to the fistula. The majorityof interviewees lived in remote villages severalhours’ walking distance from the nearest healthfacility. As a result, they had difficulty accessingantenatal care, skilled care at delivery, emergencyobstetric care, and fistula treatment. Many of thewomen were still married, though some had losttheir husbands in the war. In most cases in whichhusbands stayed with the woman living with fistula,researchers found that the couple had livingchildren prior to the onset of fistula.Home deliveriesTigre and Tigrigna tradition promote delivery of thefirst baby at the home of the woman’s mother. Healthfacilities are perceived as unlucky and filled withevil spirits. As a result, most of the women labouredat home with assistance from older female relatives,neighbours, and in some cases traditional birthattendants. Even women who lived in urban areastravelled back to their home villages to give birth.In several cases, older female relatives andneighbours who were present during labour delayedseeking medical help anywhere from 24 hours to5 days after complications began. Distances fromthe village to a health facility were often long anddifficult. By the time most women reached thehospital, it was too late to save the baby, and thedamage leading to the fistula had already occurred.Many women interviewed in 2003 said they were22Living Testimony

Photo credit: Lucian Read/WpN/On behalf of UNFPAthe unlucky ones and blamed the traditional birthattendant for delaying the referral and/or forcingthe delivery.Experiences after treatmentIn 2004, a team of foreign surgeons performedfistula surgeries for 64 women. Eleven patients whoreturned for additional treatment and four of theirfamily members were interviewed in late 2004. Ingeneral, problems with incontinence had improvedfor all women. Some described more autonomysince the surgery, though many noted that theirsocial situation had not changed markedly since thesurgery and said they still felt isolated. This may bedue to the fact that women who had continuingproblems were more likely to return for follow-upcare. The majority of interviewees were not workingat the time and were receiving financial supportfrom their husbands and/or family members.Hopes for the futureWhen asked about the future, all hoped to be fullyhealed from the effects of obstetric fistula. Theylonged to join in social activities, go to church,work, and raise a family. Many women expressedthe desire to study or start a business. Those withno children hoped to get pregnant. A 32-year-oldwoman living with fistula for 17 years said, “I wantto start a new life. I want to have friends. I want toshare my story. I know that there are other womenwith the same problem. They don’t know that theycan be healed.”SudanMy parents sent me out as they saidthat I have disgraced the family by beingunable to reproduce and the smell fromme is just too much.Woman,Southern SudanSince gaining independence from Britain in 1956,Sudan has faced two prolonged civil wars. Over thepast two decades, more than 4 million people havebeen displaced, 2 million have died, and refugeeshave fled to neighbouring countries. Despite a peacetreaty in the south in 2005, a separate conflict inObstetric Fistula and Inequities in Maternal Health 23

Darfur continues. There some 200,000 have died,and an estimated 2 million have been displacedwithin Sudan and to neighbouring countries. Thesepolitical and humanitarian crises have underminedthe health sector’s ability to address basic social,economic, and health needs.Early marriage and early pregnancy are commonacross all of Sudan; more than 40% of girls aremarried by the age of 18. Use of any contraceptivemethod is low across the country—around 8% andeven less for modern methods. There are also widevariations in contraceptive use throughout thecountry, with some states having rates of less than1%. Obstructed labour is considered a major healthproblem leading to maternal morbidity and mortalityin Sudan, especially in regions of civil conflict.Accessing sexual andreproductive health carein conflict-torn regionsCivil conflict has created major barriers to accessingsexual and reproductive health care in the Darfurregion. Nearly 700,000 people have been displacedin West Darfur, 25% of whom are women ofreproductive age. The risk of violence en route tohealth facilities, terrible roads, long distances, andhigh health care costs are obstacles to accessingappropriate health care in this war-torn region. InWest Darfur, home delivery with traditional birthattendants, midwives, or family members is common(85%) and obstructed labour is prevalent becauseof the lack of available, accessible, and affordableemergency obstetric services. 18 Transportation tocare is hindered by the security situation andimpassable roads during the rainy season. Internallydisplaced people (IDPs) face curfews imposed bylocal authorities and even physical barrierssurrounding camps, particularly at night. In asetting in which outsiders are distrusted, thoseentering camps to offer health care may also betargets of distrust or even violence.Within the national health care structure, there areseveral hospitals in the Darfur region with facilitiesand trained personnel offering fistula surgicalservices. Zalingei Hospital in West Darfur openeda Fistula Centre in May 2006 with support fromUNFPA. The annual surgical campaigns begun therein 2006 provided free fistula surgery; however,poverty and civil conflict hinder the ability ofpatients to travel for treatment. Despite thesechallenges, some 107 cases of obstetric fistulawere treated at the centre in 2006. 19 Midwives andnurses at the centre counsel women about fistula,reintegration, and family planning as part ofthe recovery process. Zalingei Hospital tries torestore hope and a semblance of normalcy inan environment in which life is disrupted andunpredictable.Rebuilding services afterdecades of conflictDecades of civil conflict in South Sudan wreakedhavoc on the health system and infrastructure,resulting in some of the poorest health indicatorsglobally. Of the estimated 11 million population,only 25% have access to health services, some 20%are considered IDPs, and many more are repatriatingfrom other countries. Recent data shows thatSouth Sudan may have the highest maternalmortality ratio in the world (2,037 per 100,000 livebirths) with few births attended by skilled personnel(5%). The extent of fistula is unknown but issuspected to be high considering the presence ofmany risk factors. Reports from neighbouringcountries that are seeing cases of fistula fromSouth Sudan indicate that a potentially significantnumber of women are hidden and not comingforward due to unavailability of care.With the signing of the Consolidated PeaceAgreement in January 2005, efforts began torebuild the health system—although the newlyestablished Government of South Sudan facesmany challenges ahead. One complex and difficultarea will be ensuring skilled attendance at birth.Very few personnel with midwifery skills areavailable in the region (an estimated eight midwivesin South Sudan). Finding qualified women to trainwill also be difficult as the majority of states in theSouth have a primary school enrolment of less than10% and a completion rate below 5%. Efforts havealso begun to help women living with fistula. In2006, nearly 20 women received care ata fistula treatment event in Juba.24Living Testimony

Photo credit: Lucian Read/WpN/On behalf of UNFPAObstetric Fistula and Inequities in Maternal Health 25

Promising PracticesI tell them they need to give birth ingood conditions and avoid a long labour.I tell them what I have been through sothey don’t have to suffer like I have.Kouboura Moutari, survivor of fistularepair and educator with Solidarité,NigerA rapid assessment of experiences in the preventionand treatment of obstetric fistula has revealed somepromising practices worth examining further. It isimportant to note that these practices have not beenevaluated rigorously, nor have they been applied indifferent settings. Evaluation of the applicability inother settings is key.Eritrea: Reintegrationand CounsellingIn Eritrea, a dedicated fistula centre provides treatmentand reintegration services for women. To assistpatients to heal emotionally, staff at the hospitalhave been trained in counselling specific to fistulapatients and regularly provide this service for thewomen in their care. The women who receivedcounselling felt that postoperative counsellingsessions had helped them to learn more aboutfamily planning and birth spacing. In turn, patientswith successful treatment and their familiesreported advising community members aboutsafe motherhood practices and preventing obstetriccomplications. Others encouraged pregnant womenin their communities to seek antenatal care.These findings pointed to the need for increasedcounselling post-treatment on the causes of fistula,the treatment process, and recovery, as well assexual and reproductive health education.Ethiopia: Model Fistula HospitalThe Addis Ababa Fistula Hospital provides physical,social, and spiritual assistance to fistula patientsand raises international awareness on obstetricfistula and other maternal morbidities. The FistulaHospital has developed a model programme thatincludes free fistula treatment and long-term carefor women who cannot return to their villages.Creating a supportive and caring environment hasbeen critical to their success. Many nursing aides atthe hospital are former patients and promote afriendly environment. The Fistula Hospital has setthe standard to provide services for those sufferingfrom childbirth and related injuries, and torehabilitate women so they can integrate back intotheir society with dignity and a sense of self-worth.Hundreds of health professionals have been trainedat the Fistula Hospital in the management ofobstetric fistula. Hospital staff have shared theirexperiences with facilities across Africa and Asia.Malawi: CommunityEmpowerment to StrengthenHealth Care ProvisionIn 232 villages in Dedza, Mchinji, and Nkhatabay,local structures for promoting community involvementin reproductive health and safe motherhood werestrengthened. Community leaders, traditionalauthorities, and village heads were trained in safemotherhood, pregnancy-related complications, andthe importance of delivering at a health facility.Trainees later enforced community safe motherhoodbylaws and established task forces to follow pregnancyoutcomes and record maternal deaths. The bylawsstated that all untrained traditional birth attendantsshould not conduct deliveries, and that firstpregnancies should be delivered at a health facility.Penalties were established for those who break thebylaws, with severe penalties for maternal death.Local Village Health Committees spread messagesencouraging women to deliver at health facilities,including writing the important messages on thewalls of houses, as well as presenting them throughdramas, poems, and songs. Trained Committeesrecorded pregnancies and maternal deaths, monitoredthe activities of traditional birth attendants, andsecured reliable transport for obstetric emergencies.The experience showed that community leadersare gatekeepers to community beliefs and culturalvalues, and that communities can achieve positivehealth outcomes through information and support.26Living Testimony

Niger: Social Rehabilitationand ReintegrationTwo NGOs, DIMOL and Solidarité, have created acommunity-based advocacy strategy for the socialreintegration of women who received fistulatreatment. This non-hospital-based strategy consistsof a 3- to 6-month training for women in incomegeneratingactivities, postoperative care, and socialreintegration. After the training, a practitioner, asocial worker, and an NGO representative accompanyand support women in their return to their village.In addition, the NGOs and community leadersconduct educational outreach on early marriage,the importance of antenatal care consultations andassisted childbirth, girls’ education, postoperative care,STIs, HIV and AIDS, and the causes and consequencesof obstetric fistula.women who have been treated for fistula have beentrained as village midwives. Scholarships areavailable for many of the students.Initial findings revealed that this strategy hasrelieved overcrowding health centres where womenhad remained due to fear of returning home afteryears of stigma. Community health promoters andtreated women have participated in community-basededucation, prevention, and reintegration activities.Close accompaniment at the community level hashelped women to follow postoperative careinstructions. Income generation skills have helpedwomen meet their basic financial needs. Womenfeel accepted by the community, and communitymembers talk more openly about fistula.Sudan: Midwifery School SystemMidwifery schools in Sudan started in 1921 toensure a midwife in every village. Village midwivesfilled a gap in female providers, which were preferred,and brought services to the community. They werethe front line of birthing care and prevention ofobstetric fistula in Sudan – providing care fornormal deliveries and referrals in the case ofcomplications. Sudan currently has three teachinghospitals and four midwifery schools, which arecompetency-based with hands-on training. Thebasic skills acquired at midwifery school include15 normal deliveries and 5 difficult deliveries underthe supervision of an obstetrician, administration ofinjections, recognition of risk signs, timely referral,and measurement of blood pressure. In one region,Photo credit: GMB Akash/ Panos Pictures/On behalf of UNFPAObstetric Fistula and Inequities in Maternal Health 27

Obstetric Fistula: Strategic Recommendations[Obstetric fistula] occurs due to obstructeddelivery and improper handling duringdelivery. To avoid these kinds of problems,the first [priority] is to conduct deliveryby trained personnel.36-year-old ruralmedical practitioner,BangladeshCountry-level needs assessments highlighted thefollowing recommendations for policy makers,programme managers, and researchers forappropriate and comprehensive prevention,treatment, and reintegration programmes.1. Promote legislation and policies toreduce maternal mortality and morbidity,and address underlying sociocultural factorsIt is vital to develop supportive legislation thataddresses the social, cultural, economic, andpolitical contexts of maternal death and illness,including obstetric fistula. In particular, existingcustomary law has been seen as an entry point atcommunity levels for advocacy and education aroundfistula. Model health policies and programmes inaffected countries should address equitable accessto reproductive health services and specialisedequipment and supplies for fistula treatment. Clinicaland contextual determinants of maternal healthmust be considered. Strategic policy planning shouldraise the visibility of underlying and indirect causes ofmaternal mortality and morbidities, including poverty,gender inequality, harmful practices, lack of girls’education, early marriage, and women’s low status.Disaggregation of indicators by age, economicstatus, and geographic location could help targetthese issues. Such indicators could help programmesfocus on vulnerable groups and key needs.2. Strengthen health system capacity toprovide skilled maternity care that isaccessible, affordable, and culturallyacceptableIt is critical that governments implement services atlocal levels to ensure that women and adolescentgirls receive skilled maternity care throughoutpregnancy, childbirth, and the early postnatalperiod. All women and adolescent girls must haveaccess to emergency obstetric care. Governmentsmust ensure that quality reproductive healthservices are accessible, affordable, and acceptable tothe community. Furthermore, governments shoulddevelop, disseminate, and implement nationalguidelines and service standards to prevent, detect,and treat obstetric fistula in a compassionatemanner. The mobilisation of funds is crucial to maketreatment and reintegration programmes availableto all women with obstetric fistula.3. Strengthen health system capacityto manage obstetric fistula sensitively,ensuring that care and treatment aresubsidised and accessibleFistula management and the prevalence of skilledbirth attendants in district and national healthfacilities must be improved. It is critical tostrengthen mechanisms to identify, refer, andtransport fistula patients. All needs assessmentshighlight transportation difficulties as a greatobstacle to accessing emergency obstetric care andsubsequent fistula treatment. Training curricula fordoctors and nurses in the management of fistulashould include prevention, detection, treatment,and reintegration. Sensitive communication skillsand attitudinal changes are critical to improvethe behaviour of all staff towards fistula patients.Providers need training in compassionatecounselling to help women cope with their injury,and all staff needs sensitivity training. Treated28Living Testimony

women should be informed about family planningand risks in pregnancy and delivery. Enhancedhealth facility counselling services will foster trustbetween women and health personnel.4. Raise awareness on sexual and reproductivehealth and reproductive rights to addressobstetric fistulaIncreasing knowledge about obstetric fistularequires clear and effective messages on sexual andreproductive health targeted at key audiences, suchas pregnant women, husbands, community leaders,community members, religious leaders, health careproviders, and traditional birth attendants. It is vitalto raise the awareness of husbands and eldersregarding pregnancy and childbirth as they play acritical role in decision making. Informative andeducational messages can be conveyed throughradio programmes, television, local theatre groups,newspapers, magazines, the Internet, and other means.involved in defining the meaning of reintegration andparticipate in the development of such programmes.Knowledge building is critical to women’sempowerment. Strategies for rehabilitation andreintegration have included training in literacyand income-generating skills, loans and grantsfor microbusinesses, reproductive health education,and counselling. Such programmes need furtherevaluation to understand what impact they have hadupon women’s lives. Programmes should also strivenot to further segregate or isolate women. Incomegeneration can help to improve the socioeconomicsituation of women and in turn alleviate theirfinancial dependency on others. Counselling shouldinclude education on family planning, futurepregnancies, and deliveries. Finally, women withcured fistula can play an important role incommunity outreach. While women speak withEducational and rights-based messages need topromote affordable and accessible skilled maternitycare, including emergency obstetric care. Messagesshould emphasise the potential harm of childmarriage and traditional practices such asunattended home deliveries. It is critical thatmessages demystify the root causes of deliverycomplications, describe the signs of obstructedlabour, underscore the consequences of delayingseeking medical care when complications arise, andreduce the stigma of fistula. Messages on treatmentoptions and social reintegration for women who havebeen treated are vital to reach women who may beliving in shame and hidden from the community.5. Promote the empowerment andreintegration of women into communitiespost-surgeryHealing from obstetric fistula is both physicaland psychological in nature. Surgery to close thefistula is medical care for physical healing, yet thesocial, economic, and psychological scars requirerehabilitative care. A number of community-basedand public organisations have striven to createreintegration programmes despite limited resources.It is important that women living with fistula arePhoto credit: Lucian Read/WpN/On behalf of UNFPAObstetric Fistula and Inequities in Maternal Health 29

community members about obstetric fistula andreproductive health, women become empowered andreconnected with the community.6. Involve women who have lived withfistula as equal participants in maternalhealth programme planning,implementation, and evaluationWomen living with fistula or post-surgery have animportant role to play in sensitising communitiesregarding the continuum of maternal health care,including the risks that arise during pregnancy anddelivery. They can assist in identifying messagingthat will resonate in communities and the channelsfor spreading these messages. Their voices can also beraised to higher levels to highlight the consequencesof failing to provide affordable and accessiblereproductive health services – particularly thoserelated to pregnancy and delivery. Additionally,women who have lived with fistula can help toidentify solutions for overcoming the barriers toreproductive health care and to evaluate theservices that are provided. This would directlycontribute to improving the accessibility and qualityof maternal health care, including treatment forfistula. In the area of reintegration where the leastis known, women’s own voices, needs and prioritiesshould drive the development of programmes.Lessons for empowering women’s participation canbe drawn from existing experiences, such as theparticipation of people living with HIV and AIDS.7. Promote partnerships to share key lessonsand to catalyse collective actionPartnerships among all players in fistulamanagement are important in raising the visibilityof obstetric fistula and addressing its social andhealth aspects. Potential partners include womenliving with fistula, medical training institutions,medical practitioners, counselling and social supportprogrammes, institutions that promote incomegeneratingactivities, NGOs, and community-basedorganisations. Building local and South-to-Southpartnerships is an essential strategy as the majorityof expertise resides in developing countries, wherefistula is most common. For example, when fistulatreatment centres were established in Chad,surgeons were trained at the Addis Ababa FistulaHospital in Ethiopia.Increased collaboration between institutionspromotes expanded treatment and reintegrationand improved communication with providers indifferent regions and countries. Partners canshare experiences in strategic planning, protocoldevelopment, awareness-raising approaches, andadvocacy. Information sharing is worthwhile inhighlighting potential obstacles to prevention,treatment, and reintegration. Partnerships—whetherlocal, regional, or international—should be based onmutual respect, with cultural and gender sensitivity.Photo credit: GMB Akash/Panos Pictures/On behalf of UNFPA30Living Testimony

8. Support research on obstetric fistula toimprove understanding of the impact ofmaternal morbidity and barriers to accessingvital reproductive health servicesMore research is needed on the social, cultural,economic, and political factors surroundingmaternal health, including obstetric fistula.Research on obstetric fistula can provide a keycontribution to the knowledge base on maternalhealth. It is critical to:1. Conduct in-depth interviews with obstetricfistula patients as a source of information toimprove maternal health programming andservices. These interviews can help shed greaterlight on the “three delays” (see sidebar, page12) and provide women’s perspectives on thebarriers to utilisation of health care;2. Gather data on women with repaired fistula,including reintegration and how they handlefamily planning, future pregnancies, anddelivery of children;3. Gather data on health care provider attitudesand practices towards fistula patients;4. Document models of reintegration supportservices; and5. Document the social and economic costs offistula to families, communities, and economiesin terms of lost productive time, as well as thecost to the health system in terms of treatingfistula and related morbidities.ConclusionsThe Campaign to End Fistula has been shaped bythe findings from these needs assessments. Theassessments have proved useful in identifyingkey institutions and individuals working in fistulaprevention, treatment, and reintegration. In themajority of these countries, the Campaign’s effortsrepresent the first research on fistula. Visibility hasbeen raised, and national plans have beendeveloped to eliminate the condition.Research findings show that obstetric fistula isexcessively high where women lack education,economic autonomy, decision-making power, andaccess to appropriate reproductive health services,including emergency obstetric care. Furthermore,maternal health is closely linked to social contextand cultural norms and behaviours.Campaign partners recognise that obstetric fistulais a complex health problem, caused by a broadrange of interlinked social, cultural, economic, andsystemic factors that affect the availability, quality,and utilisation of maternal health services. Thesesame factors are at the root of maternal death anddisability. While further research is needed toexplore and better understand these factors, thesocial and economic costs to women, communities,and health systems are too great to delay action.Too many of the world’s most disadvantaged andvulnerable women have suffered this preventableand treatable condition in silence. Too many womenare dying in childbirth needlessly. It is time to putan end to maternal death and disability.Obstetric Fistula and Inequities in Maternal Health 31

Endnotes1Lawn, J.E., and others. “Where is maternal and child healthnow?” The Lancet 368, no. 9546 (October 2006):1474–1477.2Cook, R.J., B.M. Dickens, and S. Syed. “Obstetric fistula: thechallenge to human rights.” International Journal ofGynecology and Obstetrics 87, no. 1 (October 2004): 72–77.3 UNFPA and EngenderHealth. Obstetric Fistula NeedsAssessment Report: Findings from Nine African Countries.New York, 2003.4Country assessments have been conducted in Bangladesh,Benin, Burkina Faso, Burundi, Cameroon, Central AfricanRepublic, Chad, Côte d’Ivoire, Democratic Republic of Congo,Djibouti, Equatorial Guinea, Eritrea, Ghana, Kenya, Liberia,Malawi, Mali, Mauritania, Mozambique, Niger, Nigeria,Rwanda, Sierra Leone, Somalia, Sudan, Tanzania, TimorLeste, Uganda, and Zambia.5Wall, L.L., and others. “The obstetric vesicovaginal fistulain the developing world.” Obstetrical and GynecologicalSurvey 60, no. 7 suppl. 1 (July 2005): S3–S51.6Wall, L.L. “Obstetric vesicovaginal fistula as aninternational public-health problem.” The Lancet 368,no. 9542 (September 2006): 1201–1209.7Abou-Zahr, C. “Global burden of maternal death anddisability.” British Medical Bulletin 67 (2003): 1–11.8World Health Organization. The World Health Report:Make Every Mother and Child Count (2005):http://www.who.int/whr/2005/en/index.html9Gil-González, D., M. Carrasco-Portiño, and M.T. Ruiz.“Knowledge gaps in scientific literature on maternalmortality: a systematic review.” Bulletin of the World HealthOrganization 84, no. 11 (November 2006): 903–909.10Cook, R.J., B.M. Dickens, and S. Syed. “Obstetric fistula:the challenge to human rights.” International Journalof Gynecology and Obstetrics 87, no. 1 (October 2004):72–77.11World Health Organization. Obstetric Fistula: GuidingPrinciples for Clinical Management and ProgrammeDevelopment. Geneva, 2006.12Cook, R.J., B.M. Dickens, and S. Syed. “Obstetric fistula:the challenge to human rights.” International Journal ofGynecology and Obstetrics 87, no. 1 (October 2004): 72–77.13Wall, L.L., and others. “The Obstetric Vesicovaginal Fistulain the Developing World.” Obstetrical and GynecologicalSurvey 60, no. 7 suppl. 1 (July 2005): S3–S51.14Acquire Project. Traumatic Gynecologic Fistula:A Consequence of Sexual Violence in Conflict Settings,A report of a meeting held in Addis Ababa, Ethiopia,September 6–8, 2005. June 2006.15Female genital mutilation and obstetric outcome: WHOcollaborative prospective study in six African countries.,Volume 367, Issue 9525, Pages 1835-1841.16Akhter, H.H., and others. A Cross-Sectional Study onMaternal Morbidity in Bangladesh. Bangladesh Instituteof Research for Health and Technologies (BIRPERHT).December 1996.17Dr. Mukwege from Panzi Hospital, DRC. Presentation onSexual and Gender-Based Violence, Including TraumaticFistula. UNFPA, November 30, 2006.18Omer, M. D. “Obstetric Fistulae - an overview from WestDarfur.” /unpublished report/. 2006.19M. D. and Armah, M. “Analysis of Fistula Operations fromApril 2005 to October 2006.” /unpublished data from FistulaSurgeon’s (Salih) Register/, Zalingei Civil Hospital, WestDarfur, Sudan. 2006.32Living Testimony

Needs Assessment ReportsThis publication is based on 31 country-level assessments conducted in 29 countries between 2001 and2006. Some countries conducted more than one assessment.1. EngenderHealth, UNFPA. Situation Analysis of ObstetricFistula in Bangladesh. 2003.2. Burkina Faso Ministry of Health, UNFPA. Analyse de la priseen charge des fistules urogénitales au niveau des services desanté. Ouagadougou, 2004.3. Burkina Faso Ministry of Health, UNFPA. Etudesocio-anthropologique sur la fistule obstétricaledans les régions de l’est, du centre est et du sahelau Burkina Faso. Ouagadougou, 2004.4. Cameroon Ministry of Health, UNFPA. Analyse de lasituation des fistules obstétricales dans les provinces del’extreme-nord et du nord au Cameroun. 2004.5. Central African Republic Ministry of Public Health andPopulation. Etude epidemiologique et socio-anthropologiquedes fistules obstétricales en RépubliqueCentrafricaine. 2005.6. Chad Ministry of Health, UNFPA. Document de la strategienationale de lutte contre les fistules vesico-vaginales auTchad. 2003.7. Democratic Republic of Congo Ministry of Health, UNFPA.Rapport sur l’estimation de l’ampleur et des besoins sur lesfistules urogenitales en RDC. 2005.8. Equatorial Guinea Ministry of Health and Social Welfare,UNFPA, European Commission. National Survey on ObstetricFistula in Equatorial Guinea. 2005.9. Engender Health and AMDD. Obstetric Fistula: A NeedsAssessment in Ghana and Rwanda—Expanding OurKnowledge. 200410. Eritrea Ministry of Health, UNFPA. National Fistula NeedsAssessment. 2003.11. Eritrea Ministry of Health, UNFPA, Turan J, Johnson K,Tesfamariam I. Experiences of Women Seeking MedicalCare for Obstetric Fistula in Eritrea. Asmara. 2005.12. Eritrea Ministry of Health, UNFPA, Stanford University.The Implementation and Evaluation of a Post-OperativeCounselling Program for Obstetric Fistula. 2006.13. Kenya Ministry of Health, UNFPA. Needs Assessment ofObstetric Fistula in Selected Districts of Kenya. 2004.14. Liberia Ministry of Health and Social Welfare, UNFPA.Situation Analysis of Obstetric Fistulae in Liberia. 2006.15. Malawi Ministry of Health, UNFPA. Needs Assessment ofObstetric Fistula in Malawi. 2005.16. Mali Ministry of Health, UNFPA. Situation des fistulesobstétricales au Mali. 2003.17. Islamic Republic of Mauritania Ministry of Health andSocial Affairs, UNFPA. Analyse de la situation des fistulesobstétricales en Mauritanie. Nouakchott, 2004.18. National Foundation on Vesico-Vaginal Fistula. Report ofthe Rapid Needs Assessment on Vesico-Vaginal Fistula inNigeria. Kano, 2003.19. République de Côte-d’Ivoire. Evaluation de projet Appui à laprévention et à la prise en charge des violences sexuellesdans les districts sanitair. 2006.20. République de Côte-d’Ivoire, Ministère de la santé et del’hygiène publique. Etude socio-anthropologique sur lesfistules obstétricales en Côte d’Ivoire. 2006.21. Sierra Leone Ministry of Health and Sanitation,Reproductive Health Unit. Fistula Mapping Sierra Leone.December 2004.22. Uganda Ministry of Health, UNFPA. Baseline Assessment ofObstetric Fistula in Uganda. Kampala, 2003.23 . Republic of the Sudan Federal Ministry of Health, UNFPA.Situation Analysis of Obstetric Fistula in Sudan (unpublishedreport). 2004.24. UNFPA Burkina Faso. Contribution des accoucheusesvillageoises dans la promotion de l’accouchement assistédans le district sanitaire de Zabré, Burkina Faso. 2006.25. UNFPA Malawi and Esperance Fundira. Reducing MaternalMortality through Community Empowerment: Experiencesfrom Dedza, Mchinji, and Nkhatabay. 2006.26. UNFPA Timor Leste. Fistula Needs Assessment: A PreliminaryReport. 2006.27. UNFPA. Rapid Needs Assessment for Emergency ObstetricCare and Obstetric Fistula in Somalia. 2005.28. UNFPA and EngenderHealth. Obstetric Fistula NeedsAssessment Report: Findings from Nine African Countries.2003. (Benin, Chad, Malawi, Mali, Mozambique, Niger,Nigeria, Uganda, Zambia)29. Women’s Dignity Project, Ministry of Health/Government ofTanzania, UNFPA. Tanzania Fistula Survey 2001. Dar esSalaam, 2002.30. Women’s Dignity Project and EngenderHealth. Risk andResilience: Obstetric Fistula in Tanzania. Dar es Salaam,2006.31. Zambia Central Board of Health, UNFPA. Report on ObstetricFistula Situation Analysis in Zambia. 2004.

Living Testimony: Obstetric Fistula and Inequities inMaternal Health brings together the voices of womenfrom 29 countries in Africa, the Arab States, and Asiaregarding life with obstetric fistula. Their families,community members, and health care providers shareknowledge, attitudes, and perspectives on pregnancy,delivery, and fistula. This advocacy publication presentspromising practices and strategic recommendations forpolicy makers, programmers, and researchers seekingto improve access to vital maternal health servicesand strengthen fistula prevention and treatmentprogrammes in affected countries.www.EndFistula.orgFamily Care International (FCI)588 Broadway, Suite 503New York, NY 10012 USATel: +1 (212) 941-5300Fax: +1 (212) 941-5563www.familycareintl.orgTo order additional copies or to convey questions orcomments, please contact: publications@fcimail.orgor fistulacampaign@unfpa.orgUnited Nations Population Fund220 East 42 nd StreetNew York, NY 10017 USATel: +1 (212) 297-5000Fax: +1 (212) 557-6416www.unfpa.org