Trained peers provide education to refugees

Access to breast cancer treatment improved

At Barnes-Jewish Hospital's Center for Diversity and Cultural Competence, St. Louis, MO, the Daylight program trains volunteers — recognized and influential women from local refugee and immigrant communities — to provide to their peers culturally sensitive information about breast health and breast cancer, including early detection methods. The program has been profiled by the Agency for Healthcare Research and Quality (AHRQ).

Known as "wisewomen," these volunteers also work with paid program staff to help women overcome any cultural, financial, and logistical barriers they might face in accessing screening, treatment, and follow-up services. The program has increased awareness of the benefits of early detection and enhanced access to counseling, screening, and treatment for newly arrived refugees. Anecdotal evidence suggests that it might be leading to earlier detection and better outcomes.

The evidence consists of post-implementation data on the number of program participants receiving counseling, mammograms, and treatment, along with anecdotal reports and case examples of women diagnosed as a result of the program.

St. Louis serves as home to many refugees. An estimated 100,000 refugees live in the city. In 2009, Barnes-Jewish Hospital served 12,000 new refugee patients who spoke over 81 languages.

In 2001, Barnes-Jewish staff recognized that a significant number of newly arrived immigrant women presented with end-stage breast cancer that could have been more effectively treated if detected earlier. Several hospital departments, including the Center for Diversity and Cultural Competence, the Refugee Health Department, and Interpreter Services, collaborated to launch this program, with the goal of increasing access to culturally and linguistically appropriate health care to these women.

The program evolved over time. The initiative launched as the "Wisewomen" program. The name was changed to "Daylight" to emphasize the need to bring breast cancer discussion "out into the daylight." The patient population includes female immigrants who are non-English speaking and limited English proficiency. They are uninsured.

Key program elements include the following:

• Identification and recruitment of "wisewomen" volunteers.

Working with area resettlement agencies, employers of large numbers of refugees, and places of worship, program developers identify women who are perceived by their communities as authorities in other areas, such as getting a job, finding childcare, or teaching English. Program staff contact these women and explain the program. Women who wish to participate are trained to become "wisewomen," kitchen-table experts who take advantage of teachable moments in everyday life to let their friends and family members know about breast health and the importance of early detection.

• Ongoing training and support.

The wise women receive a full-day of formal training from a registered nurse in breast health, how to perform breast self-examination, and how to link women to the healthcare system, including clinical breast examination and free mammograms at Barnes-Jewish provided through the Komen Foundation. The volunteers also receive information on the different stages of breast cancer, warning signs, and the importance of early detection for long-term survival.

The training is presented in English, but interpreters provide translation services as well as written materials in various languages for the wisewomen who do not speak English proficiently. Refresher classes are offered every so often or when new standards are released for breast cancer prevention or early detection. Since the program's start, program staff have trained 27 wisewomen. At the training session, each volunteer receives an educational toolkit that includes a supply of cards that describe, in the wisewomen's native language, how to conduct a breast self-examination, and two models for demonstrating the technique to peers. Staff also provide one-on-one training and mentoring for the wisewomen, especially before their first teaching experience.

• Community education by trained volunteers during everyday activities.

The trained wisewomen look for opportunities during everyday interactions with their peers to have conversations about breast health and the importance of breast self-examination and early detection. These conversations can take place virtually anywhere, such as at a breadmaking party before a wedding, a class in English as a second language, at the playground while watching children, or over tea. Many refugees come from cultures with a strong oral tradition of information sharing, so this method melds well with their customs.

These conversations, aided by use of the educational toolkit, generally cover the following areas:

— Why breast health is important. Wisewomen speak to their peers about the central role that women play in the success of refugee families in America and how women need to protect themselves and their health to play that role effectively. They also talk about the value of early detection and prevention of breast cancer.

— How to conduct a breast self-examination. Using the model and cards in the toolkit, the wisewomen explain how breast cancer can be treated when discovered early and how to conduct breast self-examination. The wisewomen often come up with their own ways of communicating the technique. For example, a Somali wisewoman compares breast self-examination to going to a grocery store without a list, emphasizing the need to go up and down the aisles and to scan high and low for needed items. This description presents the examination in a positive light and relates it to everyday life, thus making the technique easier to remember. The goal is to present breast self-examination in such a way that it empowers women and motivates them to seek services.

— Importance of regular mammograms. Along with information on self-examinations, the wisewomen emphasize the importance of receiving regular mammograms. They also inform women without insurance (roughly 80% of those served) about the availability of free mammograms through the Komen Foundation.

The program has increased awareness of the benefits of early detection and improved access to counseling, screening, and treatment for newly arrived refugees. Early, anecdotal evidence suggest that it might be leading to earlier detection and better outcomes.

Women in the targeted communities seem more willing to discuss breast cancer, create survivor groups, and seek annual mammography and clinical breast exams since introduction of the program. The number of women inquiring about mammography has increased each year since introduction of the program. Several Spanish-speaking survivors have formed a new support group that meets regularly.

The wisewomen have counseled more than 3,600 women in breast health, breast self-examination, and the importance of early detection.