Developing a Culturally and Linguistically Targeted Breast Cancer Educational Program for a Multicultural Population

Abstract

Breast cancer is the most commonly diagnosed cancer among women in the USA. Despite the availability of screening mammograms, significant disparities still exist in breast cancer outcomes of racial/ethnic and sexual/gender minorities. To address these disparities, the Mount Sinai Mobile Breast Health Program in New York City collaborated with local organizations to develop culturally and linguistically appropriate breast cancer education programs aimed at increasing screening mammogram utilization. Literature review of the barriers to mammography screening formed the basis to allow us to draft a narrative presentation for each targeted cultural group: African American, African-born, Chinese, Latina, and Muslim women, as well as LGBTQ individuals. The presentations were then tested with focus groups comprised of gatekeepers and members from local community and faith-based organizations which served the targeted populations. Feedback from focus groups and gatekeepers was incorporated into the presentations, and if necessary, the presentations were translated. Subsequently, the presentations were re-tested for appropriateness and reviewed for consistency in message, design, educational information, and slide sequencing. Our experience demonstrated the importance of collaborating with community organizations to provide educational content that is culturally and linguistically appropriate for minority groups facing barriers to uptake of screening mammography.

Introduction

Breast cancer is the most commonly diagnosed cancer and second leading cause of cancer death among women in the USA [1]. Advancements have been made to reduce breast cancer mortality rates over the last 20 years. However, racial/ethnic and sexual/gender minorities continue to face significant disparities in breast cancer outcomes. African-American (hereafter, “Black”) and other racial minority women tend to be diagnosed at more advanced disease stages and report lower survival than non-Hispanic white women [2]. Foreign-born immigrant women are particularly vulnerable to late-stage diagnoses due to lack of healthcare access, low education, and sociocultural and religious barriers [3–5]. In addition to racial disparities, emerging research suggests sexual minority individuals—lesbian/gay, bisexual, and queer women—are at an elevated risk for breast cancer and may be underutilizing screening services [6, 7].

Mammography screening helps detect breast cancer in its early stages and can prevent breast cancer deaths. Undergoing annual mammography screening starting at age 40 is estimated to reduce breast cancer mortality by 39.6% [8]. Given its potential benefits, increased efforts to promote mammography screenings are warranted, especially in minority communities. According to the American Cancer Society, less than 50% of Asian American and Hispanic/Latina women over age 40 had a mammogram within the past year [3]. Black women had the highest screening rate (55%), but their higher breast cancer mortality demands strengthened attention to early detection [3]. Immigrant status, religion, sexual orientation, and gender identity are intersecting factors that contribute to lower screening rates. For example, the percentage of African-born immigrant women who completed a mammogram in the past 2 years was found to be lower than the national screening rate for Black women by 33.2% [9]. Moreover, only about 50–54% of Muslim women were screened in the past 2 years compared to 64% of American women overall [3, 10, 11]. Research examining screening rates by sexual orientation and gender identity is limited, but research suggests sexual minority women and transgender people are not adhering to recommended screening guidelines as often as heterosexual and/or cisgender women [7]. Particular effort is needed to address these screening disparities and increase mammography utilization in minority populations.

Our team, based out of New York City, sought to address these disparities by developing a culturally and linguistically appropriate breast cancer education and outreach program. Our intervention focused on African-born, Black, Chinese, Latina, and Muslim women, as well as LGBTQ individuals. We worked with community partners to refine targeted educational presentations for each population. These presentations serve as the primary educational component of our program and aim to increase breast cancer knowledge and promote annual mammography screenings in our target communities. This paper describes the development of the presentations and shares insights gained in the process.

Methods

For each cultural group, a bilingual and bicultural health educator at the Icahn School of Medicine at Mount Sinai conducted a literature review of the barriers to breast cancer screening and then drafted an educational presentation addressing the myths and concerns commonly noted. Informed by narrative communication, which has been shown to help overcome resistance to cancer screening and facilitate the processing of cancer prevention information, the presentation followed the story of a character in each target cultural group [12]. The presentation began with the character feeling hesitant about obtaining a screening mammogram. Throughout the story, the character expressed a culturally relevant myth or concern regarding breast cancer or its screening. The presenter subsequently dispelled the myth with relevant information. The presentation concluded with the character receiving a screening mammogram referral and expressing interest in completing the exam. After the presentation was drafted, it was translated into the appropriate language for the target cultural group as needed (Traditional Chinese, Simplified Chinese, Spanish, or French) and then back-translated. We did not translate the presentation into Arabic due to limitations in available resources.

The presentations were sent to community gatekeepers around NYC, such as leaders of community centers, social service agencies, senior centers, and religious centers for review. These community partners were selected based on previous working relationships with our outreach program as well as their involvement with our target populations. To identify new community partners, we attended local community advisory boards, health and social service council meetings, community resource fairs, and relevant professional conferences in NYC. We met with personnel at community sites to present our initiative and engage them in developing and implementing our program. Leaders at community partner sites offered slide-by-slide feedback on the presentations and helped recruit community members at their respective organizations to review our presentations. The following are some of the questions posed to reviewers:

1. Are the images and graphs in the presentation culturally and educationally appropriate for members of your community?

2. Do the images represent members of your community?

3. Is the language used in the presentation culturally appropriate for members of your community?

4. Is the language used in the presentation clear and understandable for members of your community?

5. Does the presentation include and address commonly held breast cancer beliefs in your community?

6. Was there something about breast cancer or breast cancer screening that we did not address and that you think we should talk about?

Changes to the presentation were made in response to comments from community reviewers. Topics addressed in all seven presentations include population-specific breast cancer incidence and mortality rates, basics of cancer development, breast cancer risk factors, breast self-awareness, mammography screening preparation and procedure, screening guidelines, and healthcare coverage for mammography screenings.

Although we aimed to target each presentation to its target cultural group, we also wanted to deliver a consistent message and cultivate the image of a single, cohesive program. After making modifications to each presentation, we compared and reviewed each for consistency in message, design, educational information, and slide sequencing. Subsequently, community leaders completed a final review of the presentations for appropriateness.

Results/Lessons Learned

The following are some examples of culture-specific modifications that were made based on our literature review, gate-keeper review, and community feedback.

Black Women

In designing our presentation for Black women, we adapted educational material from the Witness Project (WP) of Harlem [13]. The WP of Harlem is a community-based, culturally sensitive breast and cervical cancer health education program targeting Black women. It is modeled after the original WP based in rural Arkansas and uses “witness role models” and lay health advisors to increase awareness, knowledge, and motivation for early detection of cancer in underserved Black women [13]. Members of our research team had previously helped establish the WP of Harlem and maintained working relationships with WP community partners. In creating our presentation, we reviewed data from WP and consulted with WP of Harlem community partners. Qualitative data gathered from focus groups conducted for the WP revealed major themes in Black women’s beliefs and perceptions of breast cancer [13]. The two prevailing themes were the sense of cancer fatalism—the belief that one is powerless in the face of cancer—and the stigmatization of cancer [13]. Our presentation, therefore, sought to address breast cancer fatalism and stigmatization by providing breast cancer survival statistics and incorporating positive narratives from survivors. In particular, we emphasized that 99% of women diagnosed with localized (stages 0 or 1) breast cancer and treated live at least 5 years after diagnosis, underscoring the importance of early detection [1].

Additionally, our presentation for Black women included a culturally targeted section on parity and breastfeeding in relation to breast cancer (Fig. 1). Higher parity has been shown to be associated with increased risk of hormone receptor-negative and triple-negative breast cancers, which are disproportionately higher in Black women [14]. However, breastfeeding appears to have protective effects against the aforementioned subtypes of breast cancer [15]. Given the potential role of breastfeeding in the prevention of breast cancers in Black women, our educational presentation placed special emphasis on encouraging participants to breastfeed or encouraging family members to breastfeed.

Fig. 1.

Presentation for Black women including a culturally targeted section on parity and breastfeeding in relation to breast cancer

African-Born Women

Studies have found African-born women have limited knowledge and exposure to breast cancer screening information prior to their arrival in the USA [4, 16]. The lack of open breast cancer discourse and availability of prevention and treatment technologies in their country of origin has engendered the notion of breast cancer as “a white person’s disease” [16]. Our presentation sought to clarify this misconception by providing noteworthy African breast cancer statistics. For example, we elucidated, “breast cancer is the most common type of cancer among African women” [17]. We initially included country-specific incidence and mortality data, but community reviewers commented that the statistical information was unduly detailed for the purpose of the presentation. Consequently, we simplified the graphs and language to highlight the overall high incidence of breast cancer among African women and the disparities in screening between US-born and African-born women.

Religious factors were also cited as barriers to breast cancer screening for African-born women. A person’s faith was thought to be protective against cancer [16]. Hence, breast cancer was commonly perceived as a “punishment from God” or result of a curse, which added to the shame and secrecy surrounding the disease [16]. Other explanations for breast cancer included being a stress-induced “boil” or consequence of a physical blow to the chest [16]. We addressed these beliefs in our presentation by explaining the basic etiology of cancer (i.e., “Cancer is the uncontrolled growth of abnormal cells in the body”) and by discussing its associated risk factors. Although no religious references were made, we involved religious leaders and conducted some presentations at faith-based institutions.

Chinese Women

The presentation for Chinese women was translated into both simplified and traditional written Chinese. In addition to different written formats, community members also emphasized the importance of making the presentation available in both Mandarin and Cantonese, which are the top two dialects spoken by Chinese immigrants in NYC. A bilingual staff member was available to present the slides orally in either Mandarin or Cantonese. A section of the presentation explained and raised awareness of the availability of medical interpretation services at healthcare facilities receiving federal funding [18].

Our presentation for Chinese women addressed the common perception that medical visits are only necessary when one feels ill (Fig. 2). Qualitative data show many Chinese immigrant women do not perceive a need to visit a doctor if they do not feel sick [19]. This belief may pose a barrier to mammography screenings for Chinese women because it can undermine the value of screening as a tool for health maintenance. To address this barrier, we included a section in our presentation explaining two important concepts: (1) breast cancer in its early stages is often asymptomatic and (2) mammography screening is the best tool to detect breast cancer early. We also clarified that treatment during these stages results in the most favorable outcomes [3].

Fig. 2.

Presentation for Chinese women addressing the common perception that medical visits are only necessary when one feels ill

Some of our Chinese community partners also raised the belief that breast cancer only occurred in women with “large” breasts and that Chinese women were not susceptible to breast cancer due to their “small” breast size. However, the relationship between breast size and breast cancer risk has not been conclusively elucidated [20]. Therefore, to dispel the myth that breast cancer is a disease of “large” breast size and to increase breast cancer knowledge, we included slides on the anatomy of breast tissue and noted that breast cancer often develops in breast lobules and milk ducts, which are present in similar quantities in women of all breast sizes [21]. Furthermore, we drew attention to more established risk factors for breast cancer, such as aging and family history of breast cancer [3].

Latina Women

In the development of our breast cancer presentation for Latinas, we adapted material from the Esperanza y Vida (EyV; Hope and Life) program, a breast and cervical cancer education program for Latina modeled after the WP [22]. EyV was designed to reflect and work with the cultural values and norms of the Latina community. Past studies have shown significant increases in participants’ breast cancer knowledge after attending EyV: 81.1% of participants who were nonadherent for mammograms indicated they would get a mammogram [22, 23]. EyV pays particular attention to the role of Latinas as caretakers in their families and uses it as an opportunity to encourage screening behaviors by using the tagline, “Healthy families begin with healthy women.” Our educational presentation addressed one of the barriers to screening that can arise from this cultural pattern, which is the lack of time for screening appointments due to one’s caretaking responsibilities. We included a slide stating the concern: “I am so busy taking care of everyone else. I do not have the time to get a mammogram,” followed by a call to women to take care of themselves so they can better care for others. The goal of these points was to harmonize one’s role as a caretaker with one’s desire to obtain mammography screenings and maintain health.

Another cultural pattern we have found in our work with the Latina community is the considerable role male partners play in healthcare decision-making. Spouses or other male relatives may be in control of transportation to appointments or may deter women from receiving healthcare from male providers [24]. To combat these potential barriers for Latinas, we included a section that speaks to the right of patients to request a female radiologic technologist at any mammography facility. Moreover, we emphasized that early-stage breast cancers, which can be detected by mammography screenings, have more treatment options and may allow for better breast conservation. The issue of transportation was more directly addressed through our patient navigation services, which was introduced after the presentation. More information on our patient navigation program is elaborated elsewhere in this article.

Muslim Women

Our presentation targeting Muslim women paid particular attention to cultural and religious practices that may influence breast cancer screening behaviors. Modesty concerns were often cited as a perceived barrier to screening. In focus groups, women expressed preference for female doctors and were concerned about who might see or touch their bodies during exams [25]. To allay some of these concerns, we emphasized patients’ right to request female radiologic technologists and explained mammography gowns are provided at every mammography facility to allow for comfort and modesty. Furthermore, we intentionally selected images of mammography exams with subjects who were more covered (Fig. 3).

Fig. 3.

Mammography exams with subjects who were more covered

Muslim women may also view breast cancer as a consequence of spiritual failing or result of God’s will [25]. This belief can detract from the perceived benefit of mammograms. At the same time, women’s faith may also encourage them to get screened. In a study of immigrant Muslim Afghan women’s perception of breast cancer, some women commented that “[their] bodies [are] from God” and that they “are responsible to take care of it” [26]. For this group of women, Islam was a positive influence that substantiated the obligation to maintain health and obtain cancer screenings. Our presentation recognized the dual role religion plays in Muslim women’s healthcare decision-making and attempted to transform attitudes toward breast cancer while reinforcing the idea that one should strive to protect one’s body and health.

In addition to religious factors, our presentation for Muslim women also focused on increasing breast cancer knowledge and addressing socioeconomic barriers to screening. For example, we dismissed the myth “breast cancer is contagious” and gave an overview of cancer development. One section spoke to the financial concerns of uninsured and undocumented patients. In this segment, we provided information on New York State health care laws and programs that ensure anyone who needs a mammography screening can receive one without incurring any out-of-pocket expenses.

LGBTQ

Our presentation targeting the LGBTQ community was heavily based on community feedback. Special attention was given to the use of transgender-inclusive terminology. For example, “breast cancer” was changed to “breast/chest cancer,” and “breast tissue” was changed to “mammary tissue.” Statistics that referenced “women” were clarified to indicate “assigned female at birth.” Likewise, accompanying images and diagrams were selected to reflect gender diversity.

In our community interviews, we realized there was confusion regarding breast cancer screening guidelines for transgender men and women. This confusion echoed the lack of consensus and research within the academic field on breast cancer screening for transgender people. Our presentation acknowledged the dearth of data and provided breast cancer screening guidelines from the University of California, San Francisco Center of Excellence for Transgender Health, one commonly cited screening source for transgender men and women [27].

Aside from lack of knowledge, it is well documented that medical mistrust and fear of discrimination are major barriers to preventive health screenings for LGBTQ individuals [28]. New interventions are needed to train healthcare providers to better care for LGBTQ patients and to create supportive healthcare environments. Although our presentation was limited in its ability to improve provider practices, we acknowledged our responsibility as a healthcare facility to provide culturally competent care for LGBTQ participants. We also reaffirmed our healthcare network’s commitment to LGBTQ inclusivity.

Conclusion

Culturally and linguistically targeted education programs have the potential to increase screening mammography utilization in minority communities and to reduce breast cancer disparities. The presented model of program development builds on prior research that elucidates the specific and systematically rooted concerns of communities and works with community partners to develop effective and sensitive responses. Preliminary feedback from participants has shown that the tools offered through the program can empower patients to successfully navigate the various barriers to obtaining annual screening. However, it is clear that more research needs to be done to address the disparities that LGBTQ communities face. In addition, an indisputable challenge will be to scale outreach efforts so that community members who are in need of this education are reached, and not just those who are already versed in this topic. The willingness of community members in the presented program development to collaborate and provide breast cancer education provides avenues to tap into underserved networks. In that process, further research and evaluation will warrant continuous refinement of these educational programs.