Obstetric fistula in tanzania - EngenderHealth

RISK AND RESILIENCE: Obstetric fistula in tanzaniaAn Overview of Findings and Recommendations from the StudyThe continuing widespread incidence of obstetricfistula is a signal that health and social systems arefailing to meet the basic needs of women. TheWorld Health Organization estimates thatapproximately two million girls and women livewith fistula worldwide, and an additional 50,000-100,000 new cases occur each year [1]. In Tanzaniaalone, it is estimated that there are approximately2,500-3,000 new cases of fistula each year [2].Obstetric fistula is typically seen as a severe anddebilitating medical condition sustained duringchildbirth. However its roots are deeply embeddedin social, cultural and economic determinants thatunderlie poverty and vulnerability. Fistula largelyaffects girls and women living in rural areas, andthose living in poverty. They often lack access toadequate health services and information, cannotpay for medical treatment, and are poorlyeducated. Moreover, fistula inhibits women’s abilityto work and to interact with communities, drivingthem deeper into poverty and further underminingtheir economic and social position. Despite thesechallenges, however, girls and women with fistulaare typically strong and resourceful, continuing tosupport their families and themselves [3].Risk and Resilience: Obstetric Fistula in Tanzania,examines the many dimensions of obstetric fistulaand its related social vulnerability. The study wasconducted by Women’s Dignity Project andEngenderHealth, in collaboration with HealthAction Promotion Association, Kivulini Women’sRights Organization, and Peramiho MissionHospital. Sixty one Tanzanian women withobstetric fistula participated in the study, togetherwith members of their families and communities,and local health care providers. This policy brief,the introduction to four thematic briefs, beginswith an explanation of obstetric fistula followed byan overview of the research study. The brief thenpresents the key findings from the study togetherwith recommendations on strategies that areurgently required to save women’s lives andsafeguard their health and well-being.*WHY THIS RESEARCH STUDY?The purpose of the study was to understand the manydimensions of fistula and its related social vulnerabilitythrough the experiences and views of girls and women livingwith fistula, members of their families and communities, andlocal health care providers. This study presents vital evidenceon how health care and social systems often fail to meetwomen’s basic needs, and presents recommendations on howthe lives of girls and women can be saved in future.from her vagina, resulting in constant and humiliating odorand wetness. In nearly all cases of obstetric fistula, the babydies. The trauma of labor can result in extreme nerve damageto the woman’s lower limbs, leading to paralysis or seriouslyimpeding the ability of the woman to walk normally. Leftuntreated, fistula can also lead to painful rashes, infections,and ulcerations.Figure 1: Diagram showing how obstetric fistula candevelop during childbirthWHAT IS OBSTETRIC FISTULA?Obstetric fistula is a severe injury that can develop duringprolonged and obstructed labor. Without prompt medicalintervention (typically a caesarean section), the constantpressure of the fetal skull in the birth canal cuts off the bloodsupply to the tissues, causing the tissues to disintegrate (seeFigure 1). A hole or ‘fistula’ then forms between the vaginaand bladder and/or between the vagina and rectum. The girlor woman is left with continuous and uncontrollable leakingBLADDERRECTUM* The companion briefs in this series examine, in greater depth, the findings for four focal areas of the current research. A full list of their titles isfound on the final page of this brief.1

Many women are either unaware that treatment is available tosurgically repair fistula, or cannot access or afford thetreatment. As a consequence, many girls and women do notreceive treatment for their condition. They may become sociallyostracized and ridiculed, or become so ashamed of theircondition that they isolate themselves from their communities.Others are rejected and abandoned by husbands and families.Moreover, women may be left with few, if any, opportunitiesto earn a living, forced to rely on others to survive [4].STUDY LOCATION, PARTNERSAND PARTICIPANTSThe study was conducted in three districts of Tanzania: SingidaRural, Songea Rural and Ukerewe. Additional interviews wereconducted at Bugando Medical Centre in Mwanza. Studyparticipants were from several different ethnic groups. Datacollection took place between July 2003 and September 2005and was undertaken by two researchers from Women’s DignityProject and two staff from each of the local partners: HealthAction Promotion Association in Singida, Kivulini Women’sRights Organization in Ukerewe and at Bugando MedicalCentre, and Peramiho Mission Hospital in Songea. Dataanalysis and write-up were done by staff of Women’s DignityProject and EngenderHealth. The study was approved by theNational Institute of Medical Research in Tanzania.A total of 61 girls and women with fistula participated in thestudy. The interviews explored women’s pregnancy, labor,delivery, and post-delivery experiences related to the pregnancythat caused the fistula, including their access to resources, socialsupport, antenatal care (ANC), and other health services.Additionally, the women were asked how fistula had affectedtheir lives and the lives of their families includingpsychologically, physically, financially, and socially. Participantswere also asked about the coping mechanisms used to mitigatethe impacts of fistula, and recommendations on locallyappropriate solutions to prevent and manage the condition. Allgirls and women living with fistula who participated in thestudy were provided with surgical repair of their fistula.In addition, 42 different family members were interviewed tounderstand their perspectives on experiences and care-seekingbehavior related to the pregnancy that caused the fistula, theimpact of fistula on the lives of family members, and copingstrategies used. Specifically, interviews focused on the actionsthat the woman and her family and friends took during laborand delivery, and the woman’s access to medical, social andfinancial resources over this period. Lastly, researchers helddiscussions with 68 community members and 23 health careproviders to explore their perceptions of the socioeconomic,cultural, and familial factors contributing to fistula, rootcauses and beliefs about fistula, and coping strategies used tomitigate its impact.Study instruments included in-depth interviews, groupdiscussions, and several participatory research methods.2

Finding 3: The lack of birth preparedness,including basic information on childbirth andtaking action around ‘delays’, increases risk.The majority of women in the study had planned to deliver ata health facility of some type, although in the end nearly allstarted labor at home. A majority of the women interviewedfaced multiple delays in reaching a facility with the necessaryservice to enable them to deliver safely. The reason most oftencited for delays was that the woman or her family or friends didnot identify a problem that needed to be addressed by a skilledhealth provider.Fewer than half of the women had set aside some funds forcosts related to labor, delivery, post-delivery and/or transport.Thus, when problems emerged, the necessary preparationwas lacking.Recommendation: Concrete information on birth preparedness,that is understood and acted upon, is critical to avoid delays intime of emergency.Health care providers, women, and their families needcomprehensive information on birth preparedness to help intimes of emergencies. It must include the ‘danger signs’ thatindicate obstetric complications, the imperative to take quickaction when signs and symptoms of obstetric complicationsfirst present, and the importance of adequate planning toavoid delays in times of emergency (e.g., saving funds fordelivery-related expenses and arranging emergency transportplans). Traditional birth attendants and health workers inperipheral facilities (including lower level cadres) must alsohave this basic knowledge so that quick and proper referralscan be made to facilities with qualified medical personnel,supplies, and equipment to manage complications. Byunderstanding and swiftly acting upon complications arisingduring pregnancy and delivery, the risks of maternal andinfant death and injury, including obstetric fistula, can besignificantly reduced.Finding 4: Lack of access to emergencycaesarean section poses a great threat towomen’s lives.The most commonly cited barriers to facility-based deliverywere lack of money, and excessive distance to the nearesthospital. Yet, nearly all the women who did make a moveduring childbirth eventually got adequate care at the hospitallevel. The majority of the women incurred costs for transport,and a minority reported having to pay some type of fee forthe delivery.The 2004/5 Tanzania Demographic and Health Survey notesthat women do not have sufficient access to essentialmaternal health services including caesarean section. The2004/5 DHS also notes that “getting money for treatment”was the single biggest obstacle facing women seeking healthcare, followed by distance to the health facility and the needto take transportation. Striking differences were reportedbetween rich and poor women, and between urban and ruralwomen. Over half of the poorest quintile cited distance tofacility and the need to take transport as big problems. Incontrast, less than 20% of urban women and those from thehighest quintile encountered these problems [5].4

channels that reach rural areas need to be prioritized, forexample radio broadcast and informational outreach throughfaith-based institutions such as churches and mosques.Beyond information, women must be supported actively toaccess fistula treatment. Given the severe economic impact offistula on women and their families, it is imperative thatfistula repairs be provided at minimal or no cost. Ideally,support should cover the costs of both transport andtreatment. Fistula programs have an ethical obligation todevelop mechanisms of such support, so that advocacy onfistula does not raise women’s expectations for treatmentwhen treatment is beyond reach.Finding 6: Even though most women withfistula had support from others, theemotional and economic impacts of fistulaare substantial for the woman herself, andfor her family.Although all of the women in the study mentioned beingsupported by at least one person when they sustained theirfistula, the majority of the women reported that they isolatedthemselves from their community. The women felt a strongsense of shame about their condition and did not want to soilthemselves in public or to smell badly. A majority of thewomen suffered stress and worry, including about the impactof the fistula on their families.Women and their families also suffered economically as aresult of the fistula. Nearly all of the women said that fistulaaffected their ability to work. Of these women, the majoritycould not work at all. As a result, their families were affectedby the loss of the woman’s contribution to work in the home,on the farm, or in earning income from other employment. Inaddition, families faced higher expenses in the dailymanagement of the woman’s condition, such as costs forextra clothes and soap, and in efforts to seek treatment torepair the fistula. Many families made great sacrifices to helpgirls and women get fistula repairs, including family membersforgoing work and income to accompany the women to seektreatment.Recommendation: Advocacy, support, and reintegrationefforts should be instituted to reduce the emotional andeconomic impacts of fistula.After successful repair, most women in the study resumedtheir normal lives, able to interact freely with their families,friends and communities, attend meetings and churchservices, and take active roles in economic activities. Manycalled their return to health “a miracle.” The findings alsoshow that families - including husbands - can, and do, supportwomen with fistula. These and other positive illustrations ofsupport from family, friends, and communities can be used inpublic education and advocacy efforts to break the stigmaaround fistula.Reintegration programs can strengthen opportunities forsuccessful re-entry after repair. However, to date, only limitedinformation is available on women’s experiences withreintegration. Further research is needed in this area sointerventions are based on a thorough understanding of whatwomen with fistula themselves need to help them begin lifeanew after repair. Reintegration efforts should also be mindfulof the potentially differing needs of women who have hadfistula for different periods of time, as it is possible thatstigma and isolation deepen the longer that a woman liveswith fistula.6

Bibliography[1] Murray C and Lopez A. Health Dimensions of Sex and Reproduction. World Health Organization. Geneva, Switzerland:1998[2] Raassen, T. Personal communication 2005, based on international estimates and local conditions.[3] Women’s Dignity Project. Faces of Dignity. Dar es Salaam: 2003[4] UNFPA and EngenderHealth. Obstetric Fistula Needs Assessment Report: Findings from Nine African Countries. NewYork: 2003.[5] United Republic of Tanzania. National Bureau of Statistics and Macro International. Tanzania Demographic and HealthSurvey 2004/5. Dar es Salaam: 2005[6] Nicol, M. “Hospital Fistula, VVF Patients, Experiences of Health Services”. Presentation at the Conference of East,Central and Southern Africa Obstetricians and Gynecologists, October, 2005. Dar es Salaam: 2005.[7] Kigoda, A., Deputy Minister of Health and Social Welfare, from her speech to Parliament on 3 July 2006. Dodoma,Tanzania.[8] Mbaruku G. and Bergstrom S. Reducing Maternal Mortality in Kigoma, Tanzania. Health Policy and Planning (1995)10(1): 71-78[9] Kayongo M., et. al., Strengthening Emergency Obstetric Care in Ayacucho, Peru. International Journal of Gynecologyand Obstetrics (2006) 92: 299-307[10] Santos C., et. al., Improving Emergency Obstetric Care in Mozambique: The Story of Sofala. International Journal ofGynecology and Obstetrics (2006) 94: 190-201Other briefs in the seriesOverview Risk and Resilience: Obstetric Fistula in TanzaniaAn Overview of Findings and Recommendations from the StudyBrief 1 Preventing Obstetric Fistula: Antenatal Care, Birth Preparedness and Family PlanningBrief 2 Reducing the Risk of Obstetric Fistula: Skilled Birth Attendance and Emergency Obstetric CareBrief 3 Living with Obstetric Fistula: The Devastating Impacts of the Condition and Ways of CopingBrief 4 Mending Lives and Recovering Livelihoods: Repair of Obstetric Fistula and ReintegrationFor more information, please contactWomen’s Dignity ProjectPO Box 79402Dar es Salaam, TanzaniaTel: +255 22 2152577Fax: +255 22 2152986Email: info@womensdignity.orgWebsite: www.womensdignity.orgEngenderHealth440 Ninth AvenueNew York, NY 10001 USATel: +1 212 561 8000Fax: +1 212 561 8067Email: info@engenderhealth.orgWebsite: www.engenderhealth.orgHealth ActionPromotion AssociationPERAMIHOMISSION HOSPITALPhotos by Mwanzo Millinga© Women’s Dignity Project and EngenderHealth 2006. All rights reserved. This publication may be reproduced without fee or prior permission foreducational and informational purposes, providing acknowledgement of the source is recognized by citation.8