As storytellers mobilizing support through narratives, we are acutely aware of our responsibility to do so without jeopardizing the privacy or dignity of the people we serve.

Today marks International Day to End Obstetric Fistula, and we’ve been reflecting on an important question: How do we, as fundraisers, clinicians and global health advocates, talk about fistula without imposing our own narrative and excluding women from their own stories?

Photo credit: Sala Lewis

How do we talk about fistula?

Obstetric fistula is one of the hardest global health topics to discuss. Women living with fistula are some of the most vulnerable in the world. Each has survived a prolonged, obstructed labor, which could have killed them, only to survive with lifelong morbidities.

Women who survive obstructed labor often lose their baby. The babies that survive can suffer lifelong neurological disease caused by reduced oxygen levels during labor. These babies may suffer paralysis and developmental deficits. In addition to the chronic incontinence that comes when a fistula develops, the women who survive this dangerous labor often experience foot drop, infertility, internal scarring that prevents normal sexual relations, and post-traumatic stress disorder.

When a woman returns home with a fistula she is constantly leaking urine, feces, or both. As a result, she will often face stigma and rejection from her own family and community. Every day, we see the devastating effects harsh words from misinformed family and community members have had on the women who receive free, comprehensive treatment from our sister organization in Tanzania, CCBRT.

“Some of [my neighbors] said having children caused this, others told me I was being cursed by witchcraft”. ~ Fadhila

“My step father influenced my young siblings by telling them that my condition was contagious and that they should keep away from me. They were always laughing at me.”    ~ Mercy

In addition to surgical and physical rehabilitation, CCBRT provides counselling and therapy to address the emotional and psychological scars left by fistula, and conducts national awareness raising campaigns to battle the misconceptions surrounding the condition.

Fistula in her words

We asked twenty women and girls undergoing treatment at CCBRT how they identify themselves and prefer to be identified – they chose words like ‘mama’, ‘businesswoman’, ‘entrepreneur’. Not one person wanted to be thought of as a ‘patient’ or a ‘victim’. The women and girls we serve do not want fistula to define them or their place in their community.  It is imperative that we tell these women and girls’ stories on their terms.

Photo credit: Sala Lewis

The power of an international platform

Kupona and our partners are in a privileged position, able to raise the voices of women and girls who often struggle to make themselves heard even before they are faced with severe trauma. We are inspired by the strength and resilience of those we meet, and strive to communicate that when we amplify their stories.

“In meeting women and learning the stories of what they do to support their families, and how much they have overcome, I am amazed by their strength. I have met women like Christine. A woman of great self-worth, she built her life with little support, and today she stands tall because she found the care she needed with a skilled surgeon. I will always remember her – not as a victim, but as a strong, empowered woman who is a role model, and my hero.” ~ Kim Keller, Johnson & Johnson

We also try to hear our words as they would sound to women who have lived with fistula. Our goal is never to be sensational or graphic; it is always to elevate the voices of these women and girls, allowing them to share their stories in their own words.

“Women with fistula have suffered so much, so deeply.  Many have been voiceless for too long, hiding their injury in shame. The very least we can do is choose our words carefully when it comes to discussing their condition or sharing their story, to be as respectful as we possibly can.” ~ Kate Grant, CEO, Fistula Foundation

As global storytellers, we are custodians of other people’s stories. We still have so much to learn, not just from these women, but from their families as well.

“While many women with fistula are abandoned by their husbands, in every fistula center you will find many husbands who support their wives, bringing food, clothes and news from home, talking to the nurses and doctors and celebrating the day that their wives are able to make the trip home. These men, whose stories are invisible and whose needs are not understood, are certain to have much to teach us. Imagine the value yet to be tapped if we were to expand our storytelling to include these husbands, from whose resilience and creativity we have much to learn.”
~ Dr. Lauri Romanzi, EngenderHealth

Want to learn more about respectful storytelling and how it impacts our discussion of fistula? Check out our Storify with highlights from the #HerWords Twitter Chat, held on International Day to End Obstetric Fistula, featuring thoughts from partners, clinicians, storytellers, and organizations fighting to #EndFistula.

Quality is Key: How lean management is transforming services at CCBRT

At Kupona Foundation, our priority is improving access to quality healthcare for people living in poverty in Tanzania. Globally, it is estimated that 5 billion people do not have access to safe surgical and anesthesia care. Our sister organization, CCBRT, is one of the leading providers of quality surgical care for people with disabilities in Tanzania.

A triage nurse and patient at CCBRT. Photo by Sala Lewis.

To improve access to CCBRT’s services, Kupona supports comprehensive efforts to address the barriers patients face to getting the treatment they need. Patients receive subsidized care so they can seek treatment regardless of their financial circumstance. CCBRT’s innovative application of mobile technology removes the burden of the cost of travel to the hospital for particularly vulnerable patients. Nationwide awareness campaigns educate communities to dispel the myths and misconceptions around disability and promote the medical services available to those in need of care.

When these barriers are removed and patients present for treatment at CCBRT’s hospital in Dar es Salaam, the first priority is to ensure that treatment is of the highest possible quality. But as demand for services continues to grow, meeting this demand with limited resources without compromising quality is one of the team’s greatest challenges. In 2012, CCBRT embarked on a journey of continuous improvement, adapting principles of lean management to help improve efficiency and eliminate waste.

The Challenge: Increasing demand for quality healthcare
Dar es Salaam is Tanzania’s largest city, and one of the fastest growing cities in the world. The city’s population is expected to increase by 85% to 6.2million by 2025. With healthcare infrastructure built to serve ~750,000 people, rapid growth puts the sustained provision of high quality healthcare in the city at risk. At CCBRT Disability Hospital, high demand for services and long wait times resulted in 80+ clients being turned away daily. Patients at CCBRT come from all over the country to seek specialist care, some travelling for days. In communities where ~65% of people live on less than $1.25 a day, and their ability to earn enough money to feed themselves and their family is directly tied to their health, accessible, affordable and timely medical attention is the key to helping communities thrive. Turning people away simply isn’t an option.

Triaging eye patients in CCBRT’s Eye Outpatient Department

The Solution: Lean management
When trying to meet increasing demand without compromising quality, healthcare facilities can learn valuable lessons from the manufacturing industry. Pioneered on the car production lines of Toyota Motor Company, lean management helps organizations to produce the highest quality ‘product’, at the lowest cost, with the shortest lead time, ultimately resulting in greater value for clients. When these principles are adapted and applied in the healthcare setting, their value takes on a new dimension: ensuring patients get the highest quality treatment, for the lowest cost, in the shortest amount of time: particularly critical in low resource settings like Tanzania.

CCBRT’s first major quality improvement initiative focused on the Eye Outpatient Department. After weeks of very specific planning, and with the support of a three-year, £430,000 grant from the Human Development Innovation Fund and advice from lean experts in the United States, CCBRT closed down their Eye OPD for an entire week, implementing a total overhaul of patient flow and processes including: changes to the physical layout of the department, introduction of an electronic ticketing system, and adjustments to processes to reduce bottlenecks and waste.

The changes increased the team’s capacity to serve patients. They saw a 72.5% improvement in the number of patients returned without service, and increased the number of patients served by more than 21%.

CCBRT is still in the relatively early stages of a long term transformation. The focus is now on expanding to the next phase of improvements. With a budget of $150,000 per year, we aim to roll out the principles across other clinical departments, starting with operating rooms, and to establish a central improvement office to institutionalize the changes that are underway.

Working toward ‘True North’
The ultimate goal of any lean transformation is to achieve what we call ‘True North’, the compass point that guides an organization from where they are now, to where they want to be. CCBRT’s True North is focused on outcomes defined around quality and safety, client satisfaction, staff engagement, and financial responsibility. Progress toward that True North will be measured by indicators including mortality and morbidity rates, the infection rate, patient wait times, and number of patient complaints, the rate of absenteeism among staff, ‘profit’ margins and the health of financial reserves.

Every improvement initiative will drive toward True North, designed to ensure that every patient, regardless of their ability to pay, receives the high quality treatment they need from trained specialists. With further investment, we can continue to not only improve the quality and accessibility of CCBRT’s services, but also contribute to a growing evidence base that will allow other frontline healthcare providers to learn from our experiences, and ultimately make high quality surgical care more readily available to the 5 billion people across the world who need it most.

Interested in learning more? Contact us. Attending the Unite for Sight Global Health and Innovation Conference in New Haven, CT in April? We will be giving a Social Impact Lab presentation on the power of lean management in healthcare. Stay tuned for more information.