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Service Delivery Innovation Profile

Trained Peers Provide Culturally Appropriate Education and Support to Refugees, Improving Access to Breast Cancer Screening and Treatment


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Snapshot

Summary

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. Known as “wisewomen,” these volunteers also work with paid program staff to help women overcome any cultural, financial, and logistical barriers they may face in accessing screening, treatment, and followup 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 may be leading to earlier detection and better outcomes.

Evidence Rating (What is this?)

Suggestive: 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.
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Developing Organizations

Barnes-Jewish Hospital
Center for Diversity and Cultural Competence, St. Louis, MO.end do

Date First Implemented

2001
The initiative launched in 2001 as the “Wisewomen” program. The name was changed in 2005 to “Daylight” to emphasize the need to bring breast cancer discussion “out into the daylight."begin pp

Patient Population

Gender > Female; Vulnerable Populations > Immigrants; Non-english speaking/limited english proficiency; Womenend pp

Problem Addressed

Newly arrived immigrants—especially refugees who have fled or been forced out of their home countries primarily because of violence—often have difficulty accessing health care services, including preventive medicine and screenings for health conditions such as breast cancer. This can lead to late-stage diagnosis, which greatly reduces the chance of survival.
  • Many barriers, leading to delayed care: Differences in language, cultural traditions, and beliefs complicate and delay access to health care for many refugees. On average, it takes about 90 days from the time a refugee woman notices symptoms until the time they seek diagnosis and care.1
    • Logistical barriers: Although resettlement agencies help refugees settle in U.S. cities, procuring housing, jobs, childcare, and education often takes priority over seeking preventive care. In addition, after their refugee coverage runs out, many refugees lack adequate (or any) insurance, and often do not have a car or driver’s license, creating additional financial and transportation-related obstacles to accessing care even when symptoms arise.
    • Language barriers: Most refugees arrive in the United States with little or no proficiency in English. Local health care providers may not have clinicians or interpreters who speak the refugee’s language. Communication difficulties can lead to missed diagnoses, incomplete followup, and other gaps in care.
    • Conflicting guidelines: Conflicting information about the appropriate time for screening and the effectiveness of such screenings can confuse even educated, English-speaking women. Newly arrived refugees with limited English proficiency face even greater challenges in sorting out the various recommendations.
    • Cultural barriers: Coming from different cultural traditions, refugees often have a different understanding of health and when and where to seek care. In many cultures, breast cancer is seen as a shameful disease that only brings death and disfigurement, with little hope for effective treatment. Consequently, many refugees do not seek care until the disease has reached an advanced stage and is causing intolerable symptoms.
  • Poor health outcomes: Late detection translates directly into poorer outcomes for refugees with breast cancer. When the cancer is detected early (Stage 0 or I), roughly 90 percent of patients survive for 5 or more years. However, only about half of those whose cancer is detected in Stage IIIB or IIIC—and only 15 percent of those diagnosed at stage IV—survive for this long.2

What They Did

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Description of the Innovative Activity

The Daylight program uses trained volunteers—recognized and influential women from local refugee and immigrant communities—to provide culturally sensitive information to their peers about breast health and breast cancer, including early detection methods. Known as “wisewomen,” these volunteers also work with paid program staff to help women overcome any cultural, financial, and logistical barriers to accessing screening, treatment, and followup services. 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 wisewomen 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 health care 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 by a registered nurse, 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 percent of those served) about the availability of free mammograms through the Komen Foundation.
  • Case management and navigation support: The wisewomen work with paid staff to help overcome any language, financial, and logistical barriers that women may face to accessing needed care, including screening and (if necessary) treatment and followup. For example, a wisewoman may call program staff for help setting up an appointment for a community member who faces multiple barriers to getting a mammogram. These may include:
    • Language barriers: Program staff (an outreach coordinator and program assistant) speak several languages, and thus can help with interpretation as needed. In addition, staff can seek the assistance of Barnes-Jewish interpreters who speak additional languages. Each year, the hospital’s interpreters support more than 40,000 encounters at the hospital, including appointment scheduling and office visits.
    • Financial barriers: Through the Komen Foundation, women without insurance receive free screening mammograms. For women with insurance, financial aid can cover their deductible. Additional funding covers followup care and treatment.
    • Logistical barriers: Case managers and wisewomen work together to address childcare, transportation, and other barriers to accessing care. A mobile mammography van brings screening services to the community. Staff can also connect patients with existing programs that provide assistance with food, utilities, and other everyday concerns that may prevent or distract women from seeking needed services. If childcare concerns prevent a woman from receiving services, staff offer to provide a ride and stay with the children while the woman sees the doctor or gets a mammogram.
  • Community education and awareness: The program sponsors ongoing educational outreach in the refugee community designed to raise awareness of breast cancer and the need for early detection. Program staff participate in health fairs and other events, distribute flyers, conduct door-to-door campaigns, send out reminder letters, and place telephone calls. Breast cancer survivors from different immigrant communities often participate in these activities, thus spreading a message of hope that motivates women to take steps to ensure early detection.
  • Expansion to serve new populations: A needs assessment conducted by the Daylight Project in 2011 showed that new-arrival refugee and deaf women share a similar communication barrier in a typical healthcare encounter. Beginning September of 2011, the Daylight Project started to work with the deaf and hard-of-hearing communities in the St. Louis area to mold a Daylight model that can connect this generally underserved community to much needed services and education related to breast health and the importance of early detection.

Context of the Innovation

Barnes-Jewish Hospital has a 100-year history of serving disenfranchised patients. Established in 1898 as Jewish Hospital, the original mission statement emphasized the need to serve St. Louis’s refugee population and Jewish community (at a time when other hospitals would not). The tradition continues today with safety-net services for the city's vulnerable residents, including immigrants and other medically underserved populations. To that end, the hospital has an extensive interpretation department with a staff of 39 interpreters who focus on providing culturally and linguistically competent care to the city’s diverse residents.

St. Louis serves as home to many refugees; more than 22,000 settled in the area between 1983 and 2004,3 and an estimated 100,000 refugees currently live in the city. In 2009, Barnes-Jewish Hospital served 12,000 new refugee patients who spoke more than 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, as described in the Planning and Development Process section below.

Did It Work?

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Results

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 may be leading to earlier detection and better outcomes.
  • Greater awareness: Women in the targeted communities seem more willing to discuss breast cancer, create survivor groups, and seek annual mammography and clinical breast examinations since introduction of the program. The number of women inquiring about mammography has increased each year since the introduction of the program. Several Spanish-speaking survivors have formed a support group that meets regularly.
  • Enhanced access to counseling, screening, and treatment: The program has provided many women with breast cancer counseling, screening, and treatment. The vast majority of these individuals likely could not have accessed these services in the absence of this program.
    • Thousands counseled: The wisewomen have counseled more than 3,600 women in breast health, breast self-examination, and the importance of early detection.
    • Many getting free screening and treatment: The program has provided 2,400 free mammograms and provided referrals/interpretation for many more insured women with language barriers. There are currently more than 30 breast cancer survivors 5 or more years after their disease was detected through the program. When the program started, few refugee women survived breast cancer.
  • Earlier detection and better outcomes: Anecdotal evidence suggests the program has resulted in earlier detection of breast cancer, which should translate into higher survival rates. For example, in 2005, two refugee women served by the program were diagnosed with Stage 3 cancer—an improvement over the common scenario of detecting it in stage IV (end-stage) disease—and received treatment. They now serve as spokespersons for the program.

Evidence Rating (What is this?)

Suggestive: 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.

How They Did It

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Planning and Development Process

Key steps included the following:
  • Initial effort focused on language barriers: The hospital initially addressed the problem by providing interpreter services and translated written materials. Program staff circulated flyers in different languages, and interpreters called patients to encourage them to come in for a free mammogram. Although the program generated some response, new immigrants still faced many barriers, and screening rates continued to lag those of other populations. Consequently, program leaders began exploring additional ways to connect with these women, with a focus on bridging cultural as well as language issues.
  • Researching cultural barriers to screening: Program leaders conducted research into the cultural issues facing women, including the fact that many cultures associate breast cancer with shame and death. For example, they learned that a woman with a family history of breast cancer may be considered unworthy of marriage, and that people in some traditions believe that talking about a disease gives it more power (thus encouraging silence, which can delay diagnosis and treatment). This research also convinced program leaders that though Barnes-Jewish Hospital had a good relationship with the immigrant community, most refugee women still did not feel comfortable talking about personal issues with someone outside their own community.
  • Designing expanded program with refugee input: Program developers decided to expand the program by consulting with people within the community about the specific barriers and attitudes that affect access to breast cancer screening. This process led to the idea of using the wisewomen as a resource for refugees and providers.
  • Initial and ongoing identification, recruitment of “wisewomen”: Staff originally searched for volunteers in eight large refugee communities in the area, including Bosnian, Arabic, Kurdish, Russian, Vietnamese, Somali, West African, and Hispanic (Central American, Colombian, Venezuelan) communities. As part of ongoing recruitment efforts, they have branched out to other refugee communities. Whenever a potential candidate has been identified, program staff meet with her (with an interpreter, if necessary) to explain the program and the benefits. Their “pitch” emphasizes the importance of mothers remaining healthy and active, which drives the ultimate success of the refugee family in acclimating to their new home.
  • Expansion to deaf community: The program expanded in 2011 to serve the deaf refugee community. A deaf breast cancer survivor joined the staff to lead the wisewoman program in this community. The program provides mammography and counseling to meet the needs and fit into the lifeways of deaf women in the region.

Resources Used and Skills Needed

  • Staffing: Paid program staff include a full-time outreach coordinator/project manager and a full-time assistant. The project manager speaks five languages and has extensive experience in health care access and interpretation. The assistant is a former wisewoman from the Bosnian community.
  • Costs: The annual program budget totaled $109,000 in 2010. The 2011 budget increased to $147,000 to allow for the hiring of an additional staff member to oversee expansion to the deaf community.
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Funding Sources

Barnes-Jewish Hospital; Komen Foundation; Missouri Department of Health and Senior Services
Information provided in July 2013 indicates that the funding from the Susan G. Komen Foundation ended as of April 1, 2013. The Barnes-Jewish Hospital is providing funding to cover the project until the end of 2013 to allow time to transition key program elements into routine hospital operations.end fs

Adoption Considerations

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Getting Started with This Innovation

  • Do not rely on traditional outreach alone: When interpreters at Barnes-Jewish Hospital first noticed the disparity in breast cancer screening among newly arrived immigrants, they assumed that interpreter-supported, traditional outreach methods—health fairs, flyers, telephone call reminders—would bring women in for free mammograms. Although these methods worked to some extent, they did not change long-term behavior or have the expected impact.
  • Take time to build trust with newly arrived immigrants: Once Barnes-Jewish Hospital staff started digging deeper into the reasons for the women’s hesitancy to access services, they realized that bridging cultural and language barriers required the building of trust as well as educating the community. Staff initially had difficulty accepting this lack of trust, as Barnes-Jewish Hospital had a good reputation in the community, and outreach to underserved populations had been part of its tradition for more than a century. However, they soon realized that new immigrants were not familiar with this history and that they faced very real barriers—cultural and otherwise—to accessing care. Overcoming these barriers required the building of trust around unfamiliar concepts of preventive health care, such as the safety of speaking of cancer and the idea that early discovery of illness could be a positive rather than negative event.
  • Get to know target community: Each immigrant group is different, and hence would-be adopters need to understand the cultures of the target communities, including how they view health care in general and breast cancer in particular. As noted earlier, many cultures consider breast cancer to be a shameful disease, brought on by the woman herself and associated with death, disfigurement, and rejection. Understanding these cultural beliefs made it possible for the Barnes-Jewish staff to design a program to address these issues and in some cases change these beliefs. For example, by emphasizing self-care as part of family obligation, the wisewomen convinced women of the need to conduct breast self-examinations, seek clinical breast examinations, and/or get mammograms.
  • Engage and involve community in designing program: As noted, program staff consulted with wisewomen on the program’s overall approach and on the design and content of written materials. They also hired a volunteer wisewoman to serve as a paid staff member once the need for such a position became clear.

Sustaining This Innovation

  • Continue conventional outreach (but not as the only method): Increasing participation in screening requires a combination of approaches, including but not limited to conventional outreach.
  • Use success stories: Sharing success stories can help the effectiveness of conventional and other forms of outreach. As noted, two participants diagnosed with breast cancer because of the program have survived the disease and now serve as spokespersons for the program by sharing their stories in local communities.
  • Consider bringing wisewomen together: The wisewomen currently get together on an informal basis, and program developers plan to make this a more formal occurrence going forward, thus allowing the women to get to know each other and to share lessons learned.
  • Consider applying program to other populations, conditions: The same approach may work for other conditions and populations. As noted, the Daylight program is being expanded to serve the local deaf community, including refugees whose hearing has been impaired by untreated ear infections.
  • Keep looking for ways to enhance access: Even with the Daylight program in place, refugee women still wait an average of 2 to 3 months from the time a potential problem has been identified to diagnosis and treatment. To address this issue, program staff convened a summit, which has led to greater cooperation between health care providers, resettlement agencies, and other members of the social service community.

More Information

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Contact the Innovator

Barbara Bogomolov, RN
Manager, Refugee Health and Interpreter Services
Center for Diversity and Cultural Competence
Barnes-Jewish Hospital
4901 Forest Park, Suite 602
St. Louis, MO 63108
(314) 747-5683
E-mail: bob6753@bjc.org

Eva Enoch, MHA
Outreach Coordinator, Refugee Health Services and Outreach
Center for Diversity and Cultural Competence
Barnes-Jewish Hospital
4901 Forest Park, Suite 602
St. Louis, MO 63108
(314) 747-5688
E-mail: eae0348@bjc.org

Innovator Disclosures

Ms. Enoch reported that the St. Louis affiliate of Susan G. Komen for the Cure® supported the work described in this profile through a grant that funds the salaries of staff working on the program. (Note that this grant ended in April 2013.) Ms. Bogomolov has not indicated whether she has financial interests or business/professional affiliations relevant to the work described in this profile.

References/Related Articles

American Cancer Society. Breast Cancer Facts & Figures 2009-2010. Atlanta: American Cancer Society, Inc., 2009. Available at: http://www.cancer.org/acs/groups/content/@nho/documents/document/f861009final90809pdf.pdf (If you don't have the software to open this PDF, download free Adobe Acrobat ReaderĀ® software External Web Site Policy.).

Billhartz GC. Making strides in care for refugees, immigrants. St. Louis Today June 10, 2010. Available at: http://immigrantsinusa.blogspot.com/2010/06/making-strides-in-care-for-refugees.html.

Footnotes

1 Podcast of interview with Barbara Bogomolov, RN. Available at: http://www.barnesjewish.org/video/PodCast.ashx?sid=1&libraryid=4. Search for "Closing the Health Disparity Gap."
2 American Cancer Society. Breast cancer survival rates by stage. Available at: http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/breast-cancer-survival-by-stage.
3 Singer S, Wilson JH. Refugee resettlement in metropolitan America. Migration Information Sources, March 2007. Available at: http://www.migrationinformation.org/Feature/display.cfm?ID=585.
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Original publication: May 25, 2011.
Original publication indicates the date the profile was first posted to the Innovations Exchange.

Last updated: July 17, 2013.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.

Date verified by innovator: July 08, 2013.
Date verified by innovator indicates the most recent date the innovator provided feedback during the annual review process. The innovator is invited to review, update, and verify the profile annually.