Trachoma elimination is one of the great public health successes of this century. This July, the World Health Organization (WHO) confirmed that Burundi and Senegal had become the 24th and 25th countries to eliminate the disease as a public health problem. The number of people at risk of it has dropped by more than 93% since 2002, from 1.5 billion people to 102.6 million today.
Trachoma is caused by a bacterial infection and presents with itching and discharge. Repeated infections result in scarring of the inner lining of the eyelid causing the lashes to turn inward, so they scrape painfully against the cornea with every blink. This is the advanced, blinding stage of the disease, called trachomatous trichiasis (TT).
The number of patients requiring surgery for TT has dropped from 7.6 million in 2002 to 1.2 million. My organisation, Sightsavers, has supported more than half a million TT operations during this time and so we are well placed to understand the factors that persuade people to agree to surgery, as well as the reasons they might say no.
People with TT open their eyes every morning to chronic pain, feeling as if their eyes are filled with sand. The condition makes it harder to farm, earn money, cook and care for family members. These people can feel like they’re a burden, and it takes a significant amount of empathy and experience to encourage these patients to come forward for the operation that will save what’s left of their sight.
Women are far more likely to need TT surgery than men. This is because young children are most likely to have active trachoma infections, and in the African countries I work in, the role of caring for children typically falls to women, exposing them to repeated infections. As work to eliminate trachoma progresses, the remaining TT cases are predominantly in older women living in remote and hard to reach areas with poor health infrastructure.
Because of gender inequalities, social structures, poverty and other factors, these women are unlikely to have had much formal education. They may have limited positive experiences of the health system, and may even already have tried various traditional “cures" (such as pulling out the eyelashes) that have failed to help. Beyond a fear of the surgery itself, they may believe rumours that surgeons use witchcraft or will steal their eyes, alongside more prosaic worries of a long recovery time (in fact it’s just 24 hours), hidden costs, and a lack of social support during recovery.
Work to address these concerns starts long before the day of the operation. Careful sensitization begins with getting trusted community and religious leaders on board. Community-based case finders are then vital to both finding people with trichiasis and encouraging them to come forward for surgery. We support training for case finders to help them respect and build trust with patients. In Senegal, traditional birth doulas sometimes play this role, given the knowledge and access that they have to households in their communities. Case finders visit patients in the comfort of their homes, actively listen to their worries, and then accompany them to confirm the diagnosis and for the surgery itself.
“The choice of a good casefinder who lives in the community ensures trust between the practitioner and the patient, and it helps with follow-up after surgery,” says Senegalese TT surgeon, Babacar Top.
For TT surgeons already working locally within each country’s health system, like Babacar Top, training is vital to making sure the expertise remains in the country for the long term. Top says that the most common fear he sees in patients is in regards to the operation itself, and the time needed to convalesce. After confirming that a patient has TT, Top helps prepare them emotionally, explaining how short the operation is and how using the anaesthetic means it won’t be painful.
Even with pre-op counseling and preparation, about 6% of people with TT in Sightsavers-supported surgical campaigns refuse surgery. It's heart-breaking when someone living in pain with trachoma says no to a life-changing operation, but sometimes we do get a second chance. For example, case finders found four people within one family in Guinea Bissau all with TT. The daughter and grand-mother, Germem and Domingas, agreed to surgery, whereas the father, Joaquim, refused, and the mother, Jaqueline, even ran away to hide. But two years later, when the surgical team returned, Jaqueline and Joaquim finally agreed to have the operation, inspired and comforted by Germem and Domingas’ experience and recovery, as well as supported by a new case finder, Samori, who the couple had known for more than 25 years.
It’s a reminder that what some people need to hear before surgery are simply first-hand success stories from people they know and trust.
