1. In this presentation, we aim to:
Speaker’s Notes:
Women who have endured an obstetric fistula are living testimony to the challenges of improving maternal health. Hearing their stories helps us to understand how to address these challenges more effectively.
Fistula reveals how poverty and gender inequality limit women’s exercise of their reproductive rights
In this presentation, we aim to:
Highlight the cultural, social, economic, and political determinants of fistula and maternal mortality and morbidity by presenting key findings from 29 country-level needs assessment conducted in Africa, Asia, and the Arab States from 2001 to 2006
Illustrate promising practices to tackle these issues from specific countries
Make strategic recommendations for policy makers, programmers, and researchers
Suggestions:
Feel free to customise the presentation, selecting slides to best fit the purpose and the interests of the audience. If there are relevant photos from local communities, you can use them in place of the photos included here.
This is an appropriate time to inform your audience of the guidelines for the presentation, such as when questions will be addressed.
Photo credit: Dima Gavrysh/On behalf of UNFPA

2. The existence of fistula is the barometer of maternal health in the country. If year by year fistula decreases, we know that maternal health is improving.
Dr. Kalilou Ouattara fistula surgeon, Mali
Speaker’s Notes:
Globally, the burden of death and illness due to pregnancy- and childbirth-related complications is massive.
More than half a million women die from pregnancy-related complications each year.
Another 210 million women are left with pregnancy-related disabilities, including obstetric fistula.
More than 2 million women live with obstetric fistula, with at least 75,000 new cases developing each year.
Suggestions:
If available, include local data on maternal mortality. For example: In [insert your country’s name], the maternal mortality ratio is [X#], meaning that [X#] die due to pregnancy and childbirth each year. It is estimated that [X#] women live with obstetric fistula.
Add in any additional relevant national information regarding the status of maternal health in the country.
Photo credit: GMB Akash/Panos Pictures

3. Speaker’s Notes:
The Campaign to End Fistula was launched in 2003 by UNFPA and partners. Over 40 countries were part of the Campaign by late 2006 and 31 country-level needs assessments had been conducted in 29 countries.
As this map shows, fistula is prevalent where maternal mortality is highest, especially where emergency obstetric care, referral systems, skilled birth attendance, and infrastructure are poor. Fistula is also more likely to occur where the social and economic environment prevents women from using reproductive health services.
The fact that fistula has been virtually eliminated from the developed world is a clear reminder that the problem can be prevented through improved access to high-quality maternal health services. Furthermore, such services would also prevent hundreds of thousands of maternal deaths and millions of other morbidities each year as well.
Suggestions:
If a campaign has been launched in the country you may wish to mention this here, including the date that it started as well as activities that are underway.

4. Speaker’s Notes:
Prolonged, obstructed labour is the major cause of obstetric fistula.
Labour is often obstructed when the mother’s pelvis is too small or the baby is too large for a vaginal delivery. Adolescent girls may be especially at risk.
Without access to medical care, the obstructed labour is prolonged. Compression of tissues between the baby’s head and woman’s pelvis cuts off blood flow. After 3-10 days, the tissues die, resulting in an opening, or fistula, between the vagina, bladder, and/or rectum and chronic incontinence for the woman.
I endured 5 days with delivery pains. I was finally transferred to the hospital and the foetus was dead. After 3 weeks, I started to feel constant flows in my vagina, and the odour was very bad. The situation has persisted for 10 years.
26-year-old woman, Equatorial Guinea

5. The decision to seek care from a skilled attendant
Speaker’s Notes:
There are three key delays during prolonged labour that impede women’s access to quality care:
The decision to seek care from a skilled attendant
Women’s limited decision-making power, cultural preference for home delivery, and limited knowledge of maternal health keep women from making the decision to seek care.
2. Reaching a health care facility
Poor roads, cost of transportation, and long distances stand in the way of access to a health care facility.
3. Receiving emergency obstetric care at the facility
Lack of skilled personnel and/or supplies further delay emergency obstetric care once women arrive at a facility.
Suggestions:
It can be helpful to illustrate these three delays by describing a specific story of a woman enduring prolonged obstructed labour and developing a fistula.
Photo credit: Richard Stanley
Photo credit: Sven Torfinn/Panos Pictures

6. Women are often stigmatized and even rejected by their community.
Speaker’s Notes:
The trauma that results from fistula is medical, social, psychological, and economic:
Leaking urine leads to genital sores, dehydration, infection, and kidney disease.
Severe nerve damage can affect a woman’s ability to walk (in up to 20% of cases).
The baby is usually stillborn or dies within weeks (in up to 90% of cases).
Women are often stigmatized and even rejected by their community.
Depression, anxiety, and even suicide can result from the isolation & stigmatization.
Women are pushed further into poverty as they lose familial support or their ability to work.
Suggestions:
If the national needs assessment has revealed any specific consequences for women in the country, they may be added here.
Photo credit: GMB Akash/Panos Pictures
Photo credit: Sven Torfinn/Panos Pictures

7. Insert quote from woman in your country here.
Nobody wants to stay with me due to the smell of urine. Even my husband sometimes blames me for my condition.
Speaker’s Notes:
Many women living with obstetric fistula described their condition as the will of God. Most felt isolated from family and the community due to their situation and were unable to practice economic activities.
Women shared their perspectives by saying:
I am distasteful in the
eyes of others. It is God’s will.
48-year-old woman, Mali
There is no joy anymore in being with
others, loneliness takes over. You lose
your habits for cooking, visiting others -
and all this makes me sad.
Woman, Burkina Faso
Everyone has rejected me.
Cure me or kill me!
Woman, Bangladesh
Suggestions:
Speakers should consider inserting quotes from women in your country. This is also an opportunity to narrate the story of a woman living with fistula in your country. You can add a short video/audio clip if available.
22-year-old woman, Bangladesh

8. Speaker’s Notes:
Across most countries reviewed, family members played a critical role in determining access to essential obstetric care – in some cases elder women, and in other cases husbands. Family members of women living with fistula made decisions about seeking care during delivery which were often in conflict with pregnant women’s wishes and needs.
Cultural norms kept many women from receiving reproductive health care. Families often expressed preference for home delivery as it is perceived as an intimate event for female relatives only and because family members distrusted the healthcare system.
Family consultations during labour and delivery often created long delays in seeking care at a health facility when complications arose.
In many countries, there was a perception that difficult labour was the result of a woman being unfaithful, also influencing decisions to seek care. This belief often resulted in families seeking treatment from traditional practitioners.
Suggestions:
Consider inserting quotes from family members of women living with fistula in your country or information that is specific to the country context based on the national needs assessment.
Photo credit: Lucian Read/WpN/On behalf of UNFPA
A woman’s primary doctor is first and foremost her husband. It is necessary that the husband support his wife before or after awareness of the condition.
Man, Cote d’Ivoire

9. Speaker’s Notes:
The causes and consequences of fistula were not well known in most communities.
Various prejudices and misunderstandings about fistula were revealed through focus groups.
Many community members linked fistula to punishment of inappropriate behaviour or supernatural causes, such as the “evil eye.”
In some communities, there was support for survivors and efforts at reintegration.
Suggestions:
Consider inserting quotes from community members regarding obstetric fistula in your country or include information based on the national needs assessment.
Photo credit: Richard Stanley
Usually the woman provokes this. When she leaves her husband and has sexual relations with another man, it happens that her husband will cast a spell on her and she will have a fistula.
Elderly woman, Burkina Faso

10. The results of [pregnancy] management by TBAs are disastrous due to the delays. They [wait] too long, do not know where to start, and do not even know where to stop.
Speaker’s Notes:
Traditional Birth Attendants (TBAs) often employed dangerous methods to address prolonged labour.
Some TBAs indicated that difficult labour is caused by infidelity or is a “curse”. This highlights the fact that many TBAs do not have accurate knowledge on the causes and prevention of obstetric fistula.
Community members in several studies identified TBA’s practices as a contributing cause of fistula.
Studies in several countries revealed that TBAs know they do not have the necessary knowledge or skill to treat fistula.
Suggestions:
Consider inserting quotes from traditional birth attendants regarding obstetric fistula in your country or specific information about TBAs in the country either from the national needs assessment or other sources.
Health care provider, Kenya
Photo credit: Dima Gavrysh/On behalf of UNFPA

11. Photo credit: Richard Stanley
Speaker’s Notes:
Providers noted a lack of awareness among community members of causes and consequences of fistula.
Appropriate medical attention was often lacking at facilities, which further impeded emergency obstetric care.
Many health personnel that assist with deliveries had no knowledge of obstetric fistula.
In most countries, few surgeons or obstetrician/gynaecologists were trained in fistula surgery.
Lack of treatment service availability causes women to travel great distances, even across borders to get care.
Suggestions:
Consider inserting quotes from health care providers regarding obstetric fistula in your country or include specific information from the national needs assessment.
OB/GYNs have shown little interest in learning how to perform fistula repairs. Even providers who have the skills to do simple repairs refuse. One probable reason is stigma.
Health care provider, Mozambique

12. Eritrea: Reintegration and counselling
Ethiopia: Comprehensive fistula treatment
Malawi: Community empowerment to strengthen health care provision
Niger: Social rehabilitation and reintegration
Sudan: Midwifery school system
Speaker’s Notes:
Some promising practices were revealed during the country level needs assessments. It is important to note that these practices have not been evaluated rigorously, nor have they been applied in different settings.
Eritrea: Hospital staff have been trained in counselling specific to fistula patients, and helped to increase women’s knowledge of family planning.
Ethiopia: Addis Ababa Fistula Hospital provides physical, social, and spiritual assistance to fistula patients and raises awareness internationally. The programme includes free fistula treatment and long-term care for women who cannot return to their villages.
Malawi: Local structures for promoting community involvement in reproductive health and safe motherhood were strengthened through training. Community task forces followed pregnancy outcomes and recorded maternal deaths.
Niger: DIMOL and Solidarite have created a community-based advocacy strategy for reintegration of women treated for fistula. Training in income-generating activities, postoperative care, and social reintegration are included in the program.
Sudan: Three teaching hospitals and four midwifery schools currently provide competency-based, hands-on training. Midwifery schools started in 1921 to ensure a midwife in every village and fill the gap in female providers.
Suggestions:
Consider inserting any promising national practices here.

13. 1. Promote legislation and policies to reduce
1. Promote legislation and policies to reduce maternal mortality and morbidity, and address underlying socio-cultural factors.
Speaker’s Notes:
Policies and programmes should address equitable access to reproductive health services and specialized fistula care.
Existing customary law may be an entry point at community levels for advocacy and education.
Disaggregation of indicators could help programmes focus on key needs and target underlying causes of maternal mortality and morbidity.
Suggestions:
Consider inserting information on your country’s legislation on maternal health and obstetric fistula.
Photo credit: GMB Akash/Panos Pictures

14. Strengthen health care system capacity to:
2. Provide skilled maternity care that is accessible, affordable and culturally acceptable.
3. Manage obstetric fistula sensitively, ensuring that care and treatment are subsidised and accessible.
Speaker’s Notes:
It is critical that governments make reproductive services geographically and financially accessible, and acceptable to the community so all women and girls have access to skilled delivery care and emergency obstetric care.
National guidelines and service standards are needed to prevent, detect, and treat obstetric fistula. It is critical to strengthen mechanisms to identify, refer, and transport fistula patients.
Providers need training in counselling to help women cope with their injury and to foster trust between women and health personnel.
Women treated for fistula, as well as their families if possible, should be informed about family planning and risks in pregnancy and delivery.
To implement programmes that address these needs, mobilisation of funds is crucial.
Suggestions:
Consider inserting information on national service availability and accessibility, guidelines and protocols for reproductive and maternal health services, and/or care and treatment guidelines for obstetric fistula.

15. 4. Raise awareness of reproductive rights to address obstetric fistula.
Speaker’s Notes:
It is vital to raise awareness of husbands and elders regarding pregnancy and childbirth.
Educational and rights-based messages can be conveyed through radio, television, theatre, periodicals, and other means that will reach populations affected by fistula. Messages should demystify causes of labour complications, underscore consequences of delaying medical care, and reduce stigma of fistula.
Efforts should be made to reach women who may be isolated by fistula, to inform them of treatment options.
Suggestions:
At this point, you can hand out any advocacy materials (brochures, publications, etc.) available. A multimedia component, particularly country-specific material, can also be used.
Photo credit: Richard Stanley

16. 5. Promote and empower the reintegration of
5. Promote and empower the reintegration of women into communities post-surgery.
6. Involve women who have lived with fistula as equal participants in maternal health programme planning, implementation, and evaluation.
Speaker’s Notes:
Women with treated fistula can play an important role in community outreach for their own self-empowerment and to educate the community.
Women living with fistula or post-surgery can sensitize communities about maternal healthcare and the risks that arise during pregnancy and delivery, identify appropriate messages and channels for raising awareness about fistula, and help to evaluate maternal health services and fistula treatment.
Women especially should drive development of reintegration programmes. Lessons on empowering women can be drawn from existing experiences, such as participation of people living with HIV and AIDS in national policy development, programme planning, and implementation.
Suggestions:
If you have invited a fistula survivor to speak at the event, you might introduce her here and mention that she will be speaking afterwards. Or if there are fistula survivors in the country that are already involved in this work you might make reference to this.

17. 7. Promote partnerships to share key lessons
7. Promote partnerships to share key lessons and to catalyse collective action.
Speaker’s Notes:
Potential partners include women living with fistula, medical training institutions, NGOs, and CBOs, among others.
The majority of expertise resides in developing countries; building local and South-to-South partnerships is essential.
Partnerships should be based on mutual respect, with cultural and gender sensitivity.
Suggestions:
Consider inserting information on current maternal health and obstetric fistula partnerships or networks in your country.
Photo credit: GMB Akash/Panos Pictures

18. 8. Support research on the social, cultural, economic
8. Support research on the social, cultural, economic and political factors related to obstetric fistula.
Speaker’s Notes:
In-depth interviews with fistula patients are a source of information to improve maternal health programming and services.
Further data on women with treated fistula and their outcomes is needed, as is data on health care provider attitudes towards fistula patients.
Models of reintegration support services should be documented.
Social and economic costs of fistula and fistula treatment at various levels should be tracked.
Suggestions:
Include any national level research gaps that need to be addressed on sociocultural and economic determinants of maternal mortality and morbidity.
Photo credit: GMB Akash/Panos Pictures
Photo credit: Lucian Read/WpN/On behalf of UNFPA

19. Speaker’s Notes:
Partners in the Campaign to End Fistula recognise that obstetric fistula is a complex health problem. Further research is imperative in order to better understand the factors contributing to fistula.
However, social and economic costs to women, communities, and health systems are too great to delay action addressing maternal death and disability. Too many women have suffered this preventable and treatable condition in silence.
We must act now to save women’s lives.
Suggestions:
Add any specific calls to action. What would you like the audience to do specifically to make a change in the current situation. Pass a law? Allocate resources? Advocate for maternal health?
Photo credit: Lucian Read/WpN/On behalf of UNFPA
Insert presenter’s contact information