Monica, only 27 years old, watched as her left breast grew a lump over the course of two years. The entire breast eventually hardened and shriveled and adhered to the chest wall before she finally sought medical care. Unfortunately, Monica is by no means a unique case — her story is standard of cancer stories in developing countries. She knew something was terribly wrong. Most women do. So why did Monica wait so long for treatment despite having an obvious physical disfigurement? What social pressures prevented her from seeking life-saving treatment?
We’ve been doing interviews on radio and television for nearly two years, repeating that early assessment and early treatment saves lives, but still most of our patients still appear in the late stages of disease. In Rwanda we had the same problem. I’ve wondered if women don’t realize the lump in cancerous. Maybe they don’t think that cancer can be cured or they are afraid of having a mastectomy.
Before launching our cancer treatment program in Haiti in June 2013, we performed a small study. It revealed that only 25 percent of Haitian women in the group had ever performed a self-breast exam. Less than half believed cancer was curable, however, more than two-thirds of women could correctly identify a half dozen symptoms of breast cancer. Why, then, do 80 percent of the women in our program only seek medical care once the breast cancer is at advanced stages and physical symptoms are noticeable?
True, a knowledge gap existed that an awareness campaign could address. But more importantly, if awareness exists on a broad basis, then we need to shift the focus to include issues concerning engagement and communication — the way in which information and interaction occurs between individuals, communities, and the healthcare system.
Grace, a friend with significant experience in communications, had heard me complain about how advanced the cases in our program were. She helped me write talking points on breast cancer in Haiti for radio and television interviews. She held my hand when I cried in exasperation as we lost another young woman to late-stage breast cancer. After a few months of reflection, Grace decided to get more directly involved in the program, focusing on the problem of awareness. With university professors, she designed an information gathering project — part focus group, part intent listening and part expressive art class. She pored over the 30-page report from the earlier research. What started out as a simple idea grew into a program on breast cancer awareness, something that will have far-reaching impact.
Grace partnered with a local group, Support Group Against Cancer, to facilitate discussions with three groups. First they spoke with a dozen breast cancer patients, then a group of doctors and nurses who ran the cancer treatment center at Project Medishare, and finally were men with no direct prior experience with breast cancer. The facilitators offered broad topics to start the conversation and recorded participants thoughts and feelings about finances, family support, mastectomy and death. The women also took turns recording their feelings, either in writing or through pictures. The pictures were not just for those who couldn’t read and write — graphic representations demonstrate more fully the complexity of the situation and the depth of their feelings on a particular topic.
I peeked in on the group with the cancer patients and participated in the group of medical staff. I looked through the drawings of both groups, trying to truly appreciate what had been right in front of my nose but never fully understood. I slowly became aware of the complex interplay of the psychosocial and socioeconomic factors. Aware of how little I knew of the patients that I was treating. Aware of how much the treatment program needed to more fully engage with the surrounding community.
The women in the groups loved participating and asked when we would convene for another meeting. The medical staff continued to offer suggestions of how to improve the layout of the cancer ward and make it more appealing for the women receiving chemotherapy. The men we interviewed were empathetic to the plight of women with breast cancer, often describing their feelings as if their wife had been diagnosed with the illness.
What we discovered cannot be easily put into a succinct summary since the results are often pictorial. The slogan that the women chose speaks volumes about the alienation of the process of diagnosis and treatment: La vie avant tout (Life above all). The medical staff came up with a simple targeted screening message as well: Know, Observe, Touch, Act. We learned that we need to communicate about illness at all stages of the disease and treatment process.
The final report on the meetings eloquently lays out the complexity of the issues: “Women in Haiti with this disease face prejudice, abandonment and loss. They experience huge amounts of anxiety that are financial as well as emotional and physical. Women fear disfigurement, their own destitution or that of their children and they fear for their lives. Family members fear the loss of a loved one, their powerlessness in the face of the disease and the huge financial burden to treat what many perceive as an inevitable death-sentence.”
The next step is to dig into the specifics of the research, followed by a nationwide awareness and engagement campaign. The project will support cancer survivors and their family members. It will allow them to talk about cancer in clearer and productive ways, which will result in more effective communication materials, including television and radio advertisements. More importantly, they’ll be the community health workers who help disseminate the materials and information through outreach in their social circles — churches, salons, work or schools.
As for me, I’m now more aware, thanks to the interdisciplinary collaboration. Hopefully, this awareness will lead to more engagement and communication. With more engagement on our side, we hope to engage women with the program at earlier disease stages and increase survival.
Vincent DeGennaro is an internal medicine doctor and a global public health specialist at the University of Florida’s Division of Infectious Diseases and Global Medicine and works half time in Haiti with the nonprofit Project Medishare. See his An American Doctor in Haiti blogs.