Beyond Surgery: Critical need for psychosocial, economic support in fistula care

By Lawrence Mulondo

Obstetric fistula is a devastating condition that affects millions of women worldwide, leaving them with physical, emotional, and social scars. While surgery is often the first line of treatment, experts say it’s only half the solution.

Beyond the operating room, women with fistula need comprehensive support to rebuild their lives, restore their dignity, and regain their place in society.

The impact of obstetric fistula extends far beyond the physical symptoms of incontinence and chronic pain. Women suffering from fistula often experience social isolation, emotional trauma, and economic hardship, as they are frequently shunned by their communities and unable to participate in economic activities.

Many suffer in silence, unable to seek care due to financial constraints, cultural stigma, or a lack of awareness about available treatment options.

An obstetric fistula is a hole that develops between a woman’s genital tract and either her bladder or rectum, usually caused by prolonged and obstructed labor during childbirth.

This condition leads to the leakage of urine and/or faeces, resulting in immense physical and emotional distress.

Addressing the whole woman, not just the physical condition

Mette Kjaer Kinoti of Amref Health Africa Kenya underscores the need for a comprehensive, holistic approach to care.

"We need to look beyond health and take a woman-centred approach," she says. "A holistic approach is necessary for full recovery, which includes emotional, social, and economic reintegration—not just treatment."

(L-R) Henry Kilonzo of Safaricom, Rhoda Ndakwe of Comprehensive Community Based Rehabilitation in Tanzania (CCBRT), Dr. Margaret Mutumba of Western University, Canada and Antony Gitau from Johnson and Johnson during a panel discussion at the Africa Health Agenda International Conference (AHAIC) in Kigali, Rwanda, during a session on "Transforming Fistula Care Across Africa. (Credit: Lawrence Mulondo)

Kinoti made these remarks while giving a keynote address at the Africa Health Agenda International Conference (AHAIC) in Kigali, Rwanda, during a session on "Transforming Fistula Care Across Africa."

She called for the integration of psychosocial and economic support in fistula care, stressing the importance of rebuilding the lives of survivors through vocational training, microfinance initiatives, and entrepreneurial programs.

Each year, an estimated 50,000 to 100,000 new cases of obstetric fistula occur worldwide, with Africa bearing the highest burden, according to the United Nations Population Fund (UNFPA).

In Uganda, for example, it is estimated that 200,000 women are living with fistula, with approximately 1,900 new cases annually. This translates to a prevalence rate of roughly 2% among women aged 15-49 in Uganda.

The condition disproportionately affects young, economically disadvantaged women who lack access to medical care, especially quality maternal care. Maternal mortality in Africa also remains alarmingly high, accounting for 70% of global maternal deaths, with 433 maternal deaths per 100,000 live births, according to the World Health Organization.

Role of community support and preventive measures

Kinoti emphasizes the importance of community support in the reintegration of fistula survivors.

“We must ensure that there is community engagement, so that survivors are invited back into the community without stigma,” she says. “By restoring the dignity of women, we uplift families, strengthen communities, and drive sustainable development.”

She also stresses the need for preventive measures, including ensuring that every birth is attended by a skilled health professional and that emergency obstetric care is accessible to all. Prevention also includes addressing harmful cultural practices such as early marriages and adolescent pregnancies, which contribute to higher rates of fistula.

Mental Health: Need for psychosocial support

Dr. Margaret Mutumba of Western University, Canada, emphasizes that, like other women facing maternal health challenges, victims of fistula also suffer from mental health issues.

She advocates for psychosocial support for survivors, calling for a comprehensive program to address both the physical and mental health aspects of fistula care.

Dr. Mutumba also highlights the importance of training community health workers in mental health care, ensuring that they are equipped to handle both the physical and emotional aspects of fistula treatment.

She calls for a unified policy approach across African countries to tackle harmful cultural practices that drive the prevalence of fistula, such as early marriage and adolescent pregnancies.

Mette Kjaer Kinoti of Amref Health Africa Kenya gives a key note address during a panel discussion at the Africa Health Agenda International Conference (AHAIC) in Kigali, Rwanda, during a session on "Transforming Fistula Care Across Africa. (Credit: Lawrence Mulondo)

Leveraging technology for fistula care

Antony Gitau from Johnson and Johnson highlights the importance of partnerships between the health and private sectors in extending fistula care.

He suggests that leveraging communication platforms such as radio and mobile technology can play a vital role in sensitizing communities about fistula prevention and available treatment options.

Henry Kilonzo of Safaricom also underscores the potential of technology in fistula care. He points out that with 1.5 billion people in Africa, 32% of whom are illiterate, mobile phones can be a powerful tool for raising awareness and providing information about health services.

He mentions how simple text messages and geolocation technology have helped inform women in Kenya about fistula care camps, enabling them to access much-needed services.

Kilonzo further explains that mobile technology can be used to monitor patients' post-surgery, ensuring that they don’t have to travel long distances for follow-up care.

"We are using technology to support health care provision, including teleconsultations and remote monitoring," he says. He believes that artificial intelligence can also help analyze large sets of data, providing insights that can improve decision-making and predict future health scenarios.

Breaking the cycle of poverty

Rhoda Ndakwe of CCBRT Hospital in Tanzania highlights the critical role of poverty in exacerbating the fistula challenge.

She points out that many women and girls affected by fistula are economically vulnerable and lack the resources to seek proper care. Limited access to transportation and healthcare services often leads to prolonged suffering.

She also emphasizes that fistula is preventable, but requires a multi-faceted approach, including proper information flow from health workers to communities.

“Everybody needs the right information to make the right decision,” she says, stressing the need for an integrated approach to address the complex factors contributing to fistula.