In large, bold type on page nine of my Swahili medical dictionary and phrasebook is written “Bora kinga kuliko tiba,” which translates to “prevention is better than cure.” Although this is a common phrase in English, we forget that for some diseases there is no cure. Cervical cancer is often diagnosed beyond a curable stage in resource-limited settings, despite being a preventable disease. Cervical cancer disproportionately affects women living in rural Tanzania – in fact, cervical cancer is diagnosed at a rate nearly ten times higher in rural Tanzania than it is in the United States.
UVM gynecologist Dr. Anne Dougherty has been travelling to rural Tanzania for the past several years developing a cervical cancer screening program. Aimed at training local health care providers in the “visualization with acetic acid” or “VIA” technique, a simple procedure that utilizes supplies commonly found in low resource areas, VIA allows women to be treated with cryotherapy for pre-cancerous lesions. I joined Dr. Dougherty in 2017 for cervical cancer screening and after many discussions and brainstorming sessions went back in the spring of 2018 to develop a patient education program.
Our patient education program was conceived after several observations made during our 2017 cervical cancer screening clinics. First, we quickly realized that many women were receiving their first ever pelvic exam, which is one of the most sensitive and intimate physical exams performed in medicine. We wanted to ensure the women were fully informed and felt in control during their exams. Second, we realized that the concept of preventative care was new; the idea of going to a clinic when you are feeling well requires a profound shift in thinking. Third, we realized that women were receptive to education pertaining to their reproductive tract, especially in an environment where women’s health care decisions are often dictated by their husband. Lastly, we saw that Maasai women were especially under-represented at the clinics, as they are deeply ingrained in their traditional pastoralist culture, do not have the same access to schools, and seldom learn the national language, KiSwahili. We wanted to provide a comprehensive and inclusive preventative health care clinic that would be inviting to these women.
During our 2017 clinic, we collected data on more than 350 women and found that 35 percent of the women reported no schooling; 37 percent of the women reported having had “some primary school,” and only 28 percent of the women reported having had “some secondary school” education. We used this data to tailor our patient education material to a fourth grade level. We also found that only 42 percent of the women attending clinic identified as Maasai despite being in an area where the local population is about 85 percent Maasai. These data points helped us to develop an innovative cross-cultural patient education program. We identified critical elements that included: inherent beliefs about health and illness, individual and community prior experiences with health care, issues of informed consent and decision-making ability, the role of men in women’s health decision making, intricacies of language and working with a translator, and how we would evaluate the effectiveness of our program.
We created patient education materials that were durable and easily transported. Cultural appropriateness was always at top of mind. Since many women are circumcised, we illustrated a vulva in a way that would be representative of the patient population. I made a poster using felt that could fold up. Sewn onto the poster was a life size representation of a Maasai woman with a traditional shuuka (cloth). Superimposed was her reproductive tract demonstrating a uterus, ovaries, fallopian tubes and cervix. I made models of the progression of cervical cancer on painted door knobs as well as felt replicas of crevices. To demonstrate a pelvic exam with a speculum, I made a 3D felt pelvic model that could be placed around a cardboard box. Once the speculum was placed, a cervix could be visualized. We traveled to village markets to give demonstrations, which were well received by men and women. Men spoke up if they had a personal experience with a wife or mother who had a positive screen or cervical cancer, and encouraged women to be screened. We eventually transitioned from delivering line by line translation to asking local health care providers to use the educational material themselves. They were excited to have new props and tools for their clinics.
My time in Tanzania was my last course work before graduation from medical school, and I felt a fundamental shift from my role as student to doctor as teacher. I had to navigate a cultural divide to connect with patients, and retrain myself to look through their lens. Our work in Tanzania can be replicated in many situations in the U.S., including rural areas, underserved areas or with new Americans. Patient education is part of comprehensive medical care, and I owe it to my patients to take a moment and think from their perspective about what some of their barriers may be to understanding their diagnosis or treatment.
This project would not be possible without the generous support of the Jerome S. Abrams Memorial Fund and the Eleanor B. Daniels Fund whose kind donations made this project possible. I am also greatly indebted to Dr. Anne Dougherty for her mentorship throughout my four years at the Larner College of Medicine. She never tires of emails and questions and has given me my foundations in humanism and cultural competency. Jenna Jorgensen and Amelia Tajik from the class of 2019 were also vital to this project and are dedicated to improving health care for the women of rural Tanzania.