Training the Trainees: A Multilingual Community Health Workers’ led Breast Health Project at Faith-based Centers in Milwaukee, WI.

Introduction

Despite the rising incidence of cancer, lower cancer screening rates persist among immigrant and refugee populations.^1,2 In a study of recent immigrants to the US, 78% reported a mammogram in the last two years, compare to 89% of US-born women (n = 3,622).³ Although the exact mechanisms are unknown, multiple factors and barriers related to various domains of social determinants of health (SDOH) contribute to cancer screening inequities among these populations.^2,4,5 In a study of 207 first-generation Muslim women eligible for a mammogram in Chicago, IL, only 52% had had a mammogram in the past two years. Years in the United States, self-efficacy, having a primary care provider perceived importance of mammogram, and intent to be screened were significant predictors of adherence with mammography recommendations.⁶ Language barriers, lack of healthcare access, transportation issues, and low literacy rates are frequently mentioned across studies in this underserved population.^7–10 However, in clinical practice, addressing specific SDOH is somewhat challenging in immigrant and refugee populations where one ethnic or racial background can include multiple languages, dialects, cultural variations, and personal beliefs that impact individuals’ preventive care and health systems at large.^11,12 To promote cancer screening, several investigators explored community-academic partnerships and care-delivery models leveraging community health workers (CHWs), and navigators who assisted minority populations to overcome culture-specific interferences.^13–16 Unfortunately, optimal use of CHW-based care delivery models is challenging due to the limited availability of multilingual CHWs, and lack of funding resources for successful and sustainable cancer screening programs.^15,17

Patient education and promoting health literacy is critical to understanding disease prevention, diagnosis, and treatment.^10,18,19 Given the fear of cancer among many populations, especially those with low literacy backgrounds may have difficulty understanding the need for cancer screening.²⁰ Furthermore, health literacy, health behaviors, and health promotion are intertwined and influenced by socio-cultural beliefs leading to varied personal health practices.^14,15 Considering these facts, community health education on cancer screening remains a daunting task requiring various auditory, visual, spatial teaching methods to cater to each individual’s needs in a personalized and multidisciplinary approach.^16,17 It is well known that immigrant and refugee communities represent varied countries of origin with multiple languages, dialects, socioeconomic statuses, neighborhood connections, and acculturation processes.¹⁸ In the context of these existing challenges, personal preferences in cancer screening uptake are inevitable, and every effort should be given for timely screening and prevent advanced cancer stage at diagnosis.^21,22 Health systems at large are underequipped to address multicultural and multilingual communities’ unique needs, especially those with low health literacy rates.²³ As the immigrant and refugee populations in the U.S. expand, the gaps in the preventive cancer screening of these communities increase, highlighting the need for novel care-delivery models.^24–28

Milwaukee, Wisconsin, is home to a rapidly expanding immigrant and refugee population, with an ongoing need for projects focusing on cancer education and preventive screening. We previously reported our community-academic partnership-led care-delivery model by multilingual CHWs that promoted screening mammography for women from immigrant and refugee communities with various barriers to SDOHin the city of Milwaukee and the neighboring counties.²⁵ This paper reports the development, training, and teaching methods used and execution of multilingual CHWs-led breast health education procedures.

Study Design and Methods

Study Design

Development of the CHW’s Training program

This community-academic partnership (CAP) effort was conducted at several faith-based centers serving immigrants, refugees, and other minorities during 4/1/2014-3/31/2016 that promoted screening mammography uptake for women with various barriers to sociodemographic and transportation domains of SDOH. A detailed description of our projects was published previously.^24,25 In brief, a CHW and patient navigator-led CAP project collaborated with multiple community organizations in Milwaukee, WI, to promote breast health education, screening mammography via mobile mammographic unit at faith-based organizations, and identified candidates for CHW training. CHW candidates were college graduates with an reputable track record in community and faith-based organizations: deeply rooted trust, being sensitive and respectful to participants’ religious beliefs and practices, and acceptability to function as a conduit between the providers and women to share their medical concerns.²⁹ Although not all refugee and immigrant populations are routinely seen at faith-based centers, women who were actively involved participated in this project. Several of our CHWs have a reputation for their collaboration and volunteering at faith-based organizations for community events, which provided an opportunity to familiarize themselves and reconnect with women who participated in this program .The hiring process during project was led by the leaders at faith-based centers. Multilingual candidates were given a priority suitable to the project, aligning with the overarching goals.

Phase 1: The training period

Upon confirmation of hiring, CHWs received a general outline of the breast health project in English and the structure of monthly workshops throughout the city of Milwaukee and the neighboring counties(Figure 1). CHWs then received breast health education through the same PowerPoint slide presentation that was used during the workshops which addressed various aspects of breast health (risk factors, breast imaging, a brief outline of breast anatomy and cancer), and healthy lifestyle procedures (exercise, ideal body weight maintenance, etc.). During the training period the PowerPoint slide content was in English but during the workshops, the same content was presented to the participants, but in different languages with the help of the interpreters. The study investigator, medical oncologist (Dr. Sailaja Kamaraju), developed the presentation, and collaborated with the project’s CHWs throughout the monthly breast health workshops at various faith-based organizations. This presentation provided an in-depth understanding of the basics of breast cancer to reproduce the information to the workshop participants and answer their questions. CHWs also provided culturally relevant feedback regarding various diets, caloric intake and physically activity information which was added and discussed during the workshops. Both CHWs and the workshop participants received the same presentation and validated breast health information booklets from the Medical College of Wisconsin’s Cancer Center and Susan G. Komen Foundation for easy readability. CHWs were asked to direct all medical-related questions to the study primary investigator.³⁰

Figure 1.

Phase 2: A multidisciplinary collaboration phase

During the second phase of the study, CHWs interacted with multiple faith-based organizations and their leaders to identify the facility structures to coordinate monthly breast health workshops. Our collaboration started with an in-person meeting with the board members of the faith-based centers, which generate a dialogue on the community needs such as rising obesity rates, diabetes, low rates of cancer screening including screening mammogram among immigrants and refugees. All subsequent communications and the collaborative process was conducted either by phone or in-person or via the email communication. This collaboration assisted in conceptual clarity among the leadership paved a path for study accrual, leading to a successful completion and sustainability of the breast health program. In addition, in this training phase, CHWs also interacted with leadership at the faith-based centers, Wisconsin Well Woman’s Program (WWWP) coordinator (Ms. Lisa Phillips) and mobile mammographic unit’s coordinator (Ms. Carla Harris). Faith-based organizations had this unique opportunity to host this breast project for the very first time, while maintaining the cultural sensitivities of the racial/ethnic groups they serve. The leaders of these organizations acknowledged the value of screening mammogram and had no concerns regarding the completion of research surveys by the participants, and expressed their interest in future cancer screening events/workshops. CHWs screened the socioeconomic status and transportation barriers of the workshop attendees and coordinated a free mammogram for eligible women under WWWP and organized transportation (vouchers, taxi etc.).

Although most of our workshop attendees are immigrants and refugees, each and every faith-based center had its own uniqueness and requirements. For example, at the Albanian center, most of the attendees were older women, and Burmese women had very low literacy rates (less than elementary school education in their countries of origin). There were also different spoken dialects among the Burmese women requiring multiple interpreters at the same event. Additionally, several women attended the workshops as walk-ins needing interpreters of their language. Although the workshops were successfully completed, the study authors acknowledge some of these challenges of time constraints with multiple interpreters at once. In one particular workshop, our CHWs coordinated six interpreters serving women six different languages. Nonetheless, the authors recommend pre-registration, and identify the women’s literacy rates to be able to spend one on one session when needed.

Phase 3: Coordination of breast health workshops

During the third phase, CHWs received basic training for coordinating breast health workshops at multiple sites in Milwaukee and the neighboring counties. This process included multiple steps: identification of faith-based organizations, interacting with site leaders, collecting the site-specific workshop participants’ demographics and needs with spoken languages, and gathering interpreters for workshops. In addition, during the study period, pre and post-test breast health knowledge surveys and programmatic evaluation were obtained, for which CHWs coordinated with interpreters throughout the sessions. We previously published participants 'demographics as shown below.

Phase 4: A focus on learning styles and teaching methods.

Multilingual CHWs coordinated 24 breast health workshops, held monthly at various faith-based organizations in several languages with the help of multilingual interpreters (Arabic, Burmese, Hindi, Punjabi, Swahili, Turkish, Urdu). Most of our clients were from various religious backgrounds: Muslim, Hindu, Christian and others. In this phase, we also provided orientation and education to the interpreters with varied educational backgrounds and work experience. Given the differences in individuals’ learning styles and preferences, we used multiple teaching methods to personalize the education process, i.e., auditory, visual, spatial, and interactive.³ For example, the PowerPoint slide presentation was used throughout the project, but several women needed one on one interactive, walk-the-talk sessions using study materials with breast imaging pictures in their spoken languages when available, otherwise, we drew pictures in an easy to understand language without using medical jargon. On few occasions, we had 4-6 interpreters at the same workshop depending on the spoken languages of the attendees, the sessions of which went longer than the anticipated.

Results

Our study demonstrates a successful CHWs training model for a total of 14 multilingual lay CHWs who – between 2014 and 2016 - provided breast health education, in seven languages, to 493 immigrant and refugee women in and near Milwaukee, Wisconsin. CHWs received training to understand various domains of SDOH and related barriers faced by the participants and were able to address participant needs by coordinating access to the workshop, screening mammograms, multilingual interpreters, and child care. Ultimately, the CHWs played vital roles as liaisons who were able to bridge the gaps between the immigrant/refugee participants and providers. As reported previously, the CHW-led program successfully reached out to a total of 188 women with no prior mammogram in the past 2-5 years; 60% (n=113) were insured, 40% (n=75) were uninsured. CHWs coordinated mammograms with a screening uptake of 100% among the insured and 80% among the uninsured.²⁵ These remarkable uptake rates demonstrate the promise of CHWs to improve cancer screening among refugees and immigrants, populations who are difficult to reach through more traditional approaches that may be more effective in connecting with English-speaking white patient populations.^5,19

In addition to the high levels of participant satisfaction with workshops and high rates of screening, this project successfully provided job training to at least six CHWs, three of whom continue to work/volunteer at these organizations, while others are in higher education (medical student, pharmacist, and the other CHW working at a healthcare facility in Milwaukee, WI). In this way, CHW programming has the potential not only to improve patient outcomes among hard-to-reach populations but to provide job skills training to those who become CHWs; such programming can serve as an essential entry point to health careers, with the CHW role exposing individuals to opportunities to advance into higher-level employment. Furthermore, together with the leaders of the specific sites, CHWs expressed an interest in working on continued cancer prevention programming, examining cervical cancer and colorectal cancer screening among immigrant and refugee populations. This demonstrates how our project successfully engaged and educated various groups within the community in ongoing health navigation and promotion.

Discussion

The critical role played by the CHWs cannot be understated. In 2018, 82% of National Comprehensive Cancer Program action plans had content related to either patient navigators or community health workers.¹⁷ For this population, our study team needed to provide education in a wide range of languages, but it was also essential to recognize that culturally relevant health communication goes far being language. Distinct cultural and faith-based expectations are highly nuanced, especially in healthcare discussions; this project’s focus on breast health presented an even greater need for sensitivity and acknowledgement of how different cultures engage with this topic. For example, it was important to recognize that some cultures may prioritize modesty in a way that challenges traditional American approaches to women’s health; or may prioritize the role of men in decision-making, even on the topic of women’s health. By engaging multilingual CHWs, our team attempted to ensure that our workshops were delivered in appropriate languages while also honoring the unique role that culture plays in the health-decision making of the immigrant and refugee women we served.

Culturally sensitive community health workers provide a standard of care above and beyond other culturally tailored methods. In a study examining the efficacy of culturally-targeted videos promoting mammography compared to generic videos, 664 Chinese-American immigrants who were non-adherent to mammograph recommendations were randomized between groups. 40.3% of women who viewed the culturally targeted video completed a mammogram, compared to 38.5% of women who viewed the generic video.³¹ While successful, our results with community health workers were significantly higher. In a study of 16 focus groups with a total of 110 women CHWs, community members, and healthcare providers, the most important areas for training CHWs were in building trust, knowledge of relevant breast health information and resource navigation, logistics for transportation and interpretation, and an understanding of the language and cultural beliefs of the patient.³²

Our study is unique in its ability to provide personalized CHW-led community education with attention to the unique learning styles and preferences of groups of women from within the same refugee/immigrant community. When possible, we conducted the education and screening in trusted sites within– or near–the participants’ community. Our study highlights the unique potential for CHWs – often having similar experiences to the patients they serve-to play a critical role in cancer screening/prevention, especially among populations with cultural and language barriers.

Other areas of cancer treatment where CHWs play an invaluable role include the active cancer treatment phase and survivorship, where inequities continue to widen.⁶ Ongoing challenges and potential opportunities exist in cancer survivorship, specifically in treatment-related toxicities’ management and psychosocial aspects of survivors from the underserved communities.^7–9 While addressing the needs of cancer survivors from minority communities, multiple strategies need to be developed: culturally appropriate models, infrastructure for the workforce, care-delivery models to promote healthcare access, and dedicated research databases for data collection.⁶

In Wisconsin (WI), CHWs are supported through the Wisconsin Department of Health Services, and their role in chronic disease prevention programs is invaluable.²¹ In the state of WI, CHWs serve in seven roles of health and disease: case management and care coordination; community-cultural liaison; health promotion and health coaching; home-based support; outreach and community mobilization; participatory research; and system navigation. CHWs also conduct home visits, provide preventive services related to the home environment and identify the triggers of disease (asthma, lead poisoning, etc.) approved by several insurance carriers, including Medicaid.²² Although not required to have certified training, the state-approved CHWs’ registered apprenticeship is available through the Area Health Education Centers (AHEC) and UniteMKE Pathway Community HUB through the Department of Workforce Development.²² In the state of WI, CHWs led care delivery continues to be successful and sustainable, as reported by several other investigators and us, and in the long-term, will serve as a good investment in caring for the underserved.^1,23–25

Return on Investment. CHWs guided care coordination is invaluable in several health conditions. Kangovi et al. conducted an RCT (Individualized Management for Patient-Centered Targets (IMPaCT), evaluating the role of CHWs in improving outcomes in low-income populations with multiple comorbidities.²⁴ As a result, the authors reported improvements in body mass index (BMI), glycosylated hemoglobin, tobacco use, blood pressure control, etc. (NCT01900470).²⁴ In addition, their return on investment analysis reported a return of $2.47 for every dollar invested on average Medicaid payer in a year.²³ Based on this information, investments in the patient care delivery process are effective for patients with barriers related to SDH.²⁴

Conclusions

CHWs based care-delivery is a model with multidimensional opportunities in promoting health equity for cancer patients. Prior studies reported the benefits and impact of CHW’s role in cancer screening, early detection, and survivorship in several parts of the world. Recently, their potential in using novel technologies, telehealth, contribution to the community, and academic research reflects their invaluable role in functioning as liaisons between the providers and patients, which should be a higher priority to address the health inequities among cancer patients. Future studies should explore various CHWs’ led care-delivery models in partnership with organizations serving the underserved and the academic centers.

Conflict of interest

None

Funding information

This project was conducted with grant support from Susan G. Komen Foundation (2014-2016).

Ethical statements

This research project involving community health workers had been in accordance with the Declaration of Helsinki and was approved by the institutional ethics committee and the IRB of the Medical College of Wisconsin (FP00010568, FP00006350).

Acknowledgment

Authors have received permission for this community outreach project from their departments to help train the CHWs during the grant (division of hematology -oncology for Dr. Kamaraju, and department of Community and Family Health for Dr. DeNomie).

Author contributions

• Melissa DeNomie, Sailaja Kamaraju, Arman Tahir, Anjishnu Banerjee and Fauzia Quereshi: conception and design.

• Melissa DeNomie, Sailaja Kamaraju, Carla Harris, Arman Tahir, Lisa Phillips and Fauzia Quereshi: data collection and assembly.

• Melissa DeNomie, Sailaja Kamaraju, Jessica Olson, Arman Tahir and Fauzia Quereshi: data analysis, manuscript writing.

All authors have approved the manuscript