Harvesting Health Knowledge: Breast Cancer Perceptions in the South Florida Latinx Farmworker Community

Abstract

South Florida agricultural regions, home to Latinx immigrant farmworkers, report higher rates of late-stage breast cancer diagnosis than national, state, and county-level averages. We conducted a community-based qualitative study on the needs, health knowledge gaps, barriers to breast cancer screening, and the role of community health workers (CHWs) in supporting the community’s access to early detection services. We conducted three CHW focus groups (FGs) (n = 25) and in-depth interviews (n = 15), two FGs (n = 18) and in-depth interviews (n = 3) with farmworker community members, and informal interviews with cancer clinicians (n = 7). Using a grounded theory approach, five core themes regarding the community’s barriers to accessing health care services emerged: (a) lack of information; (b) social and economic barriers; (c) cultural factors; (d) fears and mistrust; and (e) psychosocial concerns. Findings yield implications for community health practice, the potential impact of CHWs, and the production of breast cancer education to improve health equity along with the care continuum.

Introduction

Breast cancer is the leading cause of cancer-related death for Latinx women, yet many Latinx communities do not have access to the formal health system to receive health screenings, primary health care services, or treatment (American Cancer Society [ACS], 2018; Siegel et al., 2015). Latinx farmworker communities have lower rates of screening than other Latinx and White communities, which can lead to more cases of late-stage diagnosis and higher rates of mortality (ACS, 2018; Oluwole et al., 2003; Zambrana et al., 1999). Many Latinx farmworkers also face harsh work conditions from hazardous exposures to pesticides, other solvents, sunlight, dust, and biological exposures that place workers at increased risk for acute and chronic health effects including cancer (Arcury & Quandt, 2003; Cuervo et al., 2020; Hansen & Donohoe, 2003). SCAN 360, an interactive database on the cancer burden in South Florida, shows that Latinx women living in the agricultural region of South Florida have a higher percentage of late-stage diagnosis, (e.g., Florida City [70%], Homestead [39%], and Leisure City [51%] than the rest of Miami-Dade County [36%] and the State of Florida [37%]; Sylvester Comprehensive Cancer Center, 2020).

Foreign-born farmworkers make up 73% of the agricultural industry in the United States, with 72% of the farmworkers being of Mexican or Central American origin (National Center for Farmworker Health, 2020). Latinx farmworkers have little-to-no contact with formal health systems, experience widespread discrimination in health care settings, occupy a historically marginalized status, and are often unable to seek health services due to low wages, high and often dangerous work demands, and constant migration and transience (Arcury & Quandt, 2007; Castañeda et al., 2010; Findling et al., 2019; Quesada et al., 2011). Furthermore, these issues can present challenges for the collection of health statistics and information on immigrant Latinx farmworker’s health beliefs, including those related to disease prevalence, cancer screening rates, and general health outcomes (Chavez, 2012; Montealegre et al., 2013; Ortega-Vélez et al., 2016).

Foreign-born farmworkers often occupy an unauthorized immigration status, an important social determinant of health and a social risk factor for poor health (Asad & Clair, 2018; Castañeda, 2009; Castañeda et al., 2015). Immigration policies affect health policies and create micro-, meso-, and macro-level constraints for accessing health care. Latinx farmworkers are particularly vulnerable to the social, political, and economic structural barriers associated with an unauthorized immigration status, including lack of insurance coverage (Joseph & Marrow, 2017; Marrow, 2012; Tuohy, 2020; Viladrich, 2019), occupational hazards with little or no labor protections, benefits or rights, the stress of surveillance and fear of deportation (Asad & Clair, 2018; Castañeda et al., 2015), and lack of trust in health care providers and formal health institutions (Sewell, 2015; Smedley et al., 2002). These social inequities, imposed through oppressive immigration policies, exploitative labor experiences, and environmental injustice conditions in their occupational and residential communities (Aday, 1994; Pinheiro et al., 2020; Stokols, 1996) have profound repercussions on health outcomes and illness experiences, making immigrant farmworkers a vulnerable and underserved group (Asad & Clair, 2018; Castañeda et al., 2015; Dondero & Altman, 2020). These forms of racialized inequalities are adopted into other institutions, such as health institutions, as practices that generate more structural vulnerabilities, exclusion, and marginalization in other domains of daily life (Gee & Ford, 2011; Holmes, 2011; McClure et al., 2020).

Medical knowledge, such as clinical practice guidelines, and the subsequent authority it appoints to clinical professionals, is socially constructed and embedded in the social and political context of illness and often does not consider lay understandings of health and illness (Freidson, 1988). The exclusion of lay perspectives can perpetuate social and structural health inequities (Brown et al., 2004; Conrad & Barker, 2010; Krieger, 2011). A social constructionist approach can instead reveal distinctions between health and illness that are shaped by both social and biological factors, people’s realities, health narratives and beliefs, while highlighting power imbalances experienced by marginalized groups such as the farmworker community in South Florida. This framework incorporates lay knowledge and experience to inform and change health system practices, power dynamics in doctor–patient interactions, communication, trust and access to health care services for underserved groups (Fixsen et al., 2020; Light & Hafferty, 2008; Murphy, 2017; Smedley et al., 2002). Underserved immigrant communities could benefit from health care approaches that account for their health perceptions and the social determinants of health within their specific context.

One such community-based approach that aims to improve health access in hard-to reach communities with meaningful consideration of health beliefs and cultural context is the deployment of community health workers (CHWs). CHWs are frontline workers who are members of the community or have unique insights into a community in which they work to increase access to health services and improve health outcomes. CHWs may serve as ethnic health liaisons, brokers, or middlemen in their communities as some race and immigration scholars have conceptualized (Bonacich, 1973; Love et al., 1997; Pattillo, 2010; Portes, 1985). CHWs have historically worked in Africa, Asia, Latin America, and some areas of the United States in negotiating, engaging in participatory health discussions with the community, advocating and translating the community member’s (CM) needs to the health system (Lehmann & Sanders, 2007; Pérez & Martinez, 2008). CHW-led interventions have resulted in culturally appropriate health programs and education for underserved communities that account for lay health knowledge and increase the communities’ service access (Rodriguez et al., 2020). In Florida, Tucker and colleagues (2018) conducted a state-wide CHW survey and found that 212 CHWs worked in areas focused on prevention, 208 focused on occupational health, 187 specialized in women’s health, and 126 focused on cancer in low resource communities. Providing health information, social support for prevention and treatment, as well as a means of social capital to increase access and service utilization of health and cancer screenings, are all associated with CHW-led interventions (Angier et al., 2013; Dean et al., 2014; Fernández et al., 2009; Schwingel et al., 2017; Shelton et al., 2016; Tucker et al., 2018). CHWs are vital to reaching underserved immigrant groups and addressing language and other serious barriers to health care (Oluwole et al., 2003) and have been essential to the delivery of health education and interventions in communities like the Latinx farmworkers (Ortega-Vélez et al., 2016; Palmer-Wackerly et al., 2019).

This study uses qualitative methods to examine breast cancer perceptions, knowledge gaps, needs, and barriers to breast cancer screening among South Florida Latinx farmworkers, and the role of CHWs in supporting the community’s access to early detection services (Donaldson et al., 2012; Oluwole et al., 2003; Rodriguez et al., 2020; Zambrana et al., 1999). Breast cancer data are typically disaggregated by racial-ethnic group categories; however, the Hispanic category is extremely diverse from national and ethnic perspectives, thus presenting limitations in understanding subgroup experiences and meaning-making in illness experiences. Qualitative research allows for deeper exploration into the health experiences of unique groups. Our qualitative analysis explores the perceptions of the community and of CHWs and situates them within broader clinical practice considerations along the breast cancer care continuum.

We used a social constructionist perspective to study the social factors that shape the community’s understandings and response to breast cancer risk factor determination, screening/detection, diagnosis, treatment, and survivorship (Cockerham, 2015; Rapport et al., 2017; Rashidi et al., 2020; Thorne & Murray, 2000). This approach allowed for the negotiation and co-creation of meaning-making and knowledge between local communities, researchers, and the health care system. We present the qualitative findings on how understandings of breast cancer are socially constructed in unique communities like the South Florida farmworkers and how they are tied to perceptions about health and barriers to health care services. We then discuss breast cancer clinical practice guidelines and their implications on the Latinx farmworker community’s access to breast cancer-related health services. We offer clinical and equity considerations surrounding national cancer guidelines, health education, and intervention design.

Method

This qualitative study informed a broader project on the development of breast cancer education training and outreach materials for Mexican health promoters adapted for the farmworker community in South Florida (Franco-Marina et al., 2015; Magaña-Valladares et al., 2018). A community-based participatory research (CBPR) study with the South Florida Latinx farmworker community qualitatively explored the following research questions:

Research Question 1 (RQ1): What are the specific perceptions, knowledge gaps, needs, and barriers of the farmworker community in accessing breast health and breast cancer screening interventions?

Research Question 2 (RQ2): What is the role of CHWs in supporting the farmworker community in accessing breast health and breast cancer screening interventions?

The study design, data collection, analysis, and reporting were grounded in CBPR principles and a theoretically complementary constructionist approach that resulted in rich narratives of local farmworker health. In addition to engaging CMs and CHWs, the study also involved interviews with cancer clinicians and reviewing of the breast cancer care literature and clinical practice guidelines to understand their implications on the Latinx farmworker community’s access to breast cancer-related health services.

Study Participants

The University of Miami’s Institutional Review Board approved this research (protocol number 20180485). Inclusion criteria consisted of: (a) persons currently working as a CHW employed by a local health center in South Florida, aged 18 to 65; (b) any Spanish-speaking adult CMs of a farmworker household in South Miami-Dade County, aged 18 to 65; or (c) any person directly or indirectly working with breast health or breast cancer-related services and with the South Dade Spanish-speaking farmworker community or Latinx populations, aged 18 or older. Populations excluded from taking part in the study were: (a) adults unable to consent; (b) individuals who are not yet adults; (c) adults currently incarcerated. Gender was not a defining criterion for recruitment.

Recruiting for research included participants who are affiliated with health projects conducted by the University of Miami Sylvester Comprehensive Cancer Center, farmworker community organizations, and community health centers in the farmworker community of South Miami-Dade County. The research team partnered with local community health and development organization leaders for recruitment. Participatory and collaborative efforts with the Florida Community Health Worker Coalition, local community health centers, and the local offices of two national farmworker organizations helped create and disseminate a recruitment flyer via email and in community spaces.

Data Collection

We used FG question guides, in-depth interviews, freelisting activities, and a written exit questionnaire that were all designed through dialogue and participation from local farmworker-based community organizations and community health centers that serve the farmworker community. All parties involved in the research agreed on locations where FGs and interviews took place while being mindful of convenience and removing barriers to free speech. Data collection took place for 2 years (2017–2019) through a co-learning process between farmworkers, community leaders, and our academic research team.

Data collection consisted of three FGs and 15 in-depth follow-up interviews with the CHW, two FGs and three in-depth interviews with members of the farmworker community, and seven interviews with cancer clinicians. Prior approvals for FGs and in-depth interviews included reading informed consent forms to participants with information on the study and confidentiality procedures, clarifying any unclear language, obtaining verbal consent to protect participants, and each participant receiving a copy of the consent form. Using ethical guidelines, an honorarium amount was determined. For the participant’s time and any transportation cost, each participant received a US$25 gift card from a supermarket chain store for each FG or interview in which they took part. Participants received an additional US$25 gift card for their participation in any follow-up in-depth interview.

Focus group participants completed a brief questionnaire that collected basic demographic information. The research team transcribed field notes and FG and in-depth interview audio-recordings without names of participants or agencies. The transcriptions included general terms for FGs: “facilitator” and “CHW” or “CM” and “interviewer” and “CHW,” “CM,” “Breast Cancer Clinicians” for in-depth interview transcriptions and note files to protect anonymity. The study team translated Spanish transcripts to English prior to analysis. Deidentified transcriptions were kept on a university computer in a password-protected file. Data were managed and organized using NVivo software.

Data Analysis

A constructionist approach to grounded theory, data are co-constructed and the participants’ and researchers’ positionality is taken into account, guided the analysis of FGs and in-depth interviews (Bryant & Charmaz, 2019; Charmaz, 2008, 2014). The research team determined that constructionist grounded theory was also the most compatible approach for CBPR because it would allow data to emerge and be analyzed from the participatory research process. The analytical coding consisted of five major phases: (a) line-by-line open coding using gerunds from the transcript language; (b) research team discussion of the main concepts based on the FG and interview guides, field notes, and transcription memos to theorize with abduction methods to allow the research topic and aims guide the content; (c) axial coding that included larger sections of data; (d) two strategic meetings among both coders to reconcile codes and establish inter-rater reliability; (e) constant comparison of codes followed by selective coding and collapsing of the data to develop and organize related codes with one another and generate parent codes in NVivo that emerged as the main categories (Charmaz, 2014). This process resulted in emerging themes and the identification of noteworthy findings related to cancer meanings, perceptions, and experiences accessing breast cancer services.

Results

A total of 25 CHWs (22 women and three men), 21 farmworker CWs (18 women and three men), and seven cancer clinicians (six women and one man) participated in the study. The supplemental file provides a sociodemographic overview of the community-based study participant groups (CHWs and farmworker CWs). The median age among farmworker CWs was 50 and ranged from ages 20 to 74. The farmworkers described their work as tending to and harvesting fruits and vegetables in the field or working in plant nurseries. Other women who belonged to farmworker families did domestic work, worked in laundromats, or no longer worked. The median age among CHWs was 48 and ages ranged from 30 to 66.

Barriers to Breast Cancer Care

Participant quotes represent socially constructed perspectives on breast cancer given the farmworkers’ lived experiences and CHWs’ experiences working with the Latinx farmworker community. Since research questions were designed from a community orientation and not solely focused on farmworkers who have experienced breast cancer, the narratives about cancer-related experiences and health care services were embedded in discussions on health disparities.

The narratives are helpful to understanding the existing barriers and how to improve health care service utilization related to breast health and breast cancer in the South Florida farmworker community. The five core themes in the narratives on the CW’s realities and response to health prevention and breast cancer care continuum include: (a) Lack of Information; (b) Social and Economic Barriers; (c) Cultural Factors; (d) Fear and Mistrust; (e) Psychosocial Concerns. These themes are represented by quotes labeled with the source with terms CM for community members or CHW for CHWs and either the FG or IDI for In Depth Interview with the corresponding number.

Lack of information.

Farmworker CWs expressed a lack of information about their own health and health services available to them related to cancer. Women in the FGs described growing up with older family members who did not pass down information to younger generations about health, body awareness and illnesses because elders wanted to protect younger family members from health information perceived as too grave to share. Women discussed older family members shielding them from realities as a form of protection, when they were children and adolescents, while some stated that protecting them from information was part of myths or taboos related to the potential stigma associated with illness like sexually transmitted diseases. The CWs described cancer as a death sentence due to limited information about cancer detection, diagnosis, and treatment:

“When the word cancer is mentioned it is like mentioning death.”—CM-FG1

Some women discussed a lack of information about the importance of screening and where to seek affordable services:

“We are not going to do much prevention because we don’t find the way or the information of where we can do prevention”—CM-FG1

“I think that it’s because many times we aren’t aware”—CM-IDI

Not having access to information about the mammogram process also led women to believe that mammograms could harm the breast. Many women had perceived dangers from the sight of a mammograph machine. Other women mentioned hearing of cases where a woman experienced pain during a mammogram or that the screening process could damage the breast:

“I have already heard several comments that because of the way the machine grabs the breast, it crushes it, it indeed causes damage and it may even explode certain blood vessels.”—CM-FG2

Narratives about not prioritizing health because of work or putting family members first were frequently tied to going without health information and resources.

Like the women in the farmworker FGs, CHWs often described the community’s lack of awareness of health status and services. CHWs in all FGs discussed issues around facilitating information on access for cancer screening, diagnosis, and treatment that were not known in the community. Similarly, CHWs also highlighted the use of “word of mouth” within the community to share health information, resources, and anecdotal illness-related experiences. CHWs discussed having to reconcile these different sources of health information when interacting with members of the community:

“Some of them just don’t know how to go out and get it and utilize it [healthcare services].”—CHW-FG1

“There are so many resources that are available to those who are in those communities they’re unaware of.”—CHW-IDI

One difference between farmworker and CHW narratives was that CHW brought up barriers in communication with clinical professionals. CHWs discussed the lack of provider–patient communication on screening, annual physicals, and other women’s health services:

“… I believe that in breast cancer there is one thing that is not done and that is when you go to the doctor, the doctor should inform or show the person how to do the [self] check.”—CHW-IDI

Many CHWs described times where patients were confused after their medical visit on the proper frequency of breast cancer screening because their doctor did not clearly explain this recommendation. One CHW expressed concerns about inconsistencies around age to begin mammography.

Social and economic barriers.

The financial concerns around the cost of services and lack of insurance were salient throughout discussions with women and CHWs about screening, preventive health, obtaining diagnosis, and treatment. Many women expressed not being able to afford even the sliding-scale fees for screening and other services offered by most local community health centers:

“It’s very difficult because of the economic system … the majority of us do not have insurance …”—CM-FG1

The women discussed barriers related to transportation and the time it takes to go to an appointment and losing a day of work, child care responsibilities, and other daily tasks. One breast cancer survivor expressed not being able to work since she received treatment.

“I haven’t had that job [tree nursery] since last year when my breast cancer was detected.” CM-FG2

Consequently, CHWs specifically pointed out health priorities in the farmworker community being more focused on children’s needs and not on adults, mainly because of work demands, as many cannot take time off or cannot afford to financially forgo a day or hours of work for a wellness check or screening:

“Going to the downtown county hospital [to see specialists] is your whole day … you lose work, you don’t take care of your children or other errands … you stop everything because you have to be there and also the money you spend …”—CM-FG2

Although some women had knowledge of and utilized certain health centers and programs like mobile mammography units that offer services or resources in their local community, these options were extremely limited. The women expressed interest in learning more about breast cancer and additional resources through outreach programs like workshops. Many of the women discussed having financial barriers to access a screening mammography and potential cancer treatment due to lack of insurance. The women in the farmworker community described facing language barriers in doctor–patient interactions; yet, some women expressed “leaving any health concern in the hands of the doctor” and trusting doctors when faced with illness. These narratives highlight the importance of having clear and positive doctor–patient communication to promote health, prevention, and appropriate care management.

There was some level of frustration, expressed by CHWs, around not being able to offer more resources to the women surrounding breast cancer screening and care. Although there are some programs and services offered through the health department, and private county hospitals, they all come with limitations. The health department program had very limited funding that was only available on a first-come, first-serve basis. The CHWs explained that private hospitals required certain eligibility criteria that were difficult to obtain due to their undocumented status. Moreover, the nearest county hospital that did not require a social security number was about 30 miles away with extremely long wait-times for visits. The CHWs were most prepared to inform and work with the community via health fairs.

The CHWs also described farmworkers’ breast cancer understandings in relation to their immigration status and how CHWs could serve to ameliorate-related access issues. In contrast to CHW narratives, women in the farmworker community discussed immigration as a status related to everyday limitations but never articulated fearing formal health institutions or feeling undeserving in health spaces. Both groups of CWs and CHWs expressed concerns about the affordability of treatment due to cost or lack of insurance, and the fear of the impact of treatment on the body, as well as some beliefs around treatment causing more harm than good:

“They don’t have health insurance and they cannot afford the cost of the treatment, and then the language barrier…”—CHW-IDI

We learned that some women often had community support when it came to cancer care services where collectively CWs and community organizations helped to cover health care costs. Other women discussed seeking help through the health department or county hospital but still facing challenges to pay for services.

Fear and mistrust.

The theme of fear surrounded much of the FGs and interviews with women and men in the farmworker community. The theme of fear was related to fatalism on any health concern:

“We sometimes avoid getting that terrible word [cancer] diagnosed, because we are terrified to hear it.”—CM-FG1

One of the women described “suffering” whenever there was something wrong with her health, especially if potentially related to cancer, and that women in the community automatically associated cancer with death:

“the fear of thinking that we are going to die.”—CM-FG2

Women also described having a fear of pain from having a mammogram either from word of mouth or the personal discomfort they had previously felt. Some women either described having had a painful mammography or having heard from family and friends of experiences with painful mammograms.

According to CHWs, fear also derived from the potential physical toll and impact of cancer treatment as well as the loss of income from missing work. The CHWs working in the farmworker community echoed the hesitation women expressed about mammograms due to the fear of pain and even beliefs about it causing more harm than good. Women in the community were described as fatalistic and afraid to learn of any diagnosis of illness, but CHWs felt it was important to work through or reduce these fears while respecting beliefs. CHWs also expressed that some women did not want to be screened for breast cancer because they did not want to know if something was wrong:

“they don’t want to know if they have [breast cancer] it.”—CHW-FG2

CHWs did not discuss how women saw cancer as a death sentence. Rather, CHWs described the women as being afraid to access health services because of fear of deportation, being in denial about potential breast problems, and “waiting until it’s too late” as common consequences of fear. CHWs expressed that many CWs who have an unauthorized status had sentiments of fear and of not being deserving of health care services based on immigration policies and political climate in the media:

“A lot of people are afraid to ask for help … Lately they have been careful signing up for government services because they hear a lot of things on the street … because of their legal status …”—CHW-FG1

The CHWs also discussed the community’s lack of trust in doctors and being afraid of a painful mammogram as another determent to utilizing cancer-related health services.

Cultural factors.

Women in the farmworker community discussed their understanding of what getting a mammography was like and going through the screening, diagnosis, and treatment process. Some women in the FG expressed being thankful to God that they had not gone through breast cancer. However, several of the women in the FGs discussed experiencing breast abnormalities including one who was a breast cancer survivor. The women all leaned on their faith in God to help them through the experience of resolution of abnormalities or depending on God to get through living with cancer. One woman expressed contemplating if God had brought cancer into her body so that she could “learn to love herself and God more.”

Women in both FGs discussed the benefits of natural or herbal medicine to prevent and even cure illness, like drinking certain herbal teas. Some of the women did express believing that it was important to follow medical indications once there was a diagnosis of an illness while others stressed taking natural remedies as soon as possible to prevent hypertension, diabetes, and cancer:

“There are several natural herbs such as kalanchoe, aloe … many … and there are many testimonies that they have been curative”—CM-FG2

Many expressed having cultural taboos about getting their bodies checked:

“We Latinas have many myths.”—CM-FG1

Others stated that they believe their community is very conservative and they “don’t talk about causes.” Many CHWs described husbands having a machismo attitude, displaying masculine dominance and control over their female partners, and expressed machismo as a barrier to health services for women in the farmworker community:

“We connect very well with the women in our community but sometimes we can’t reach certain women because there’s a barrier which is their husbands”—CHW-FG1

The CHW talked about times where they had to convince their clients’ husbands to bring their wives into the health centers for services:

“Sometimes the men don’t let the women speak, they’re the people who speak for them, so we have to deal with their husbands first.”—CHW-FG1

The CHWs confronted issues with husbands around women having male doctors and having gynecological visits; this required CHWs to be persistent and creative in their communication with male partners to get the family into the health center. The CWs, on the other hand, never overtly discussed the issue of machismo but did express feeling embarrassed to have a gynecological visit:

“Feeling shame of having to spread your legs and the doctor seeing you”—CM-FG1

CHWs discussed that many people in the community believed that in time they would heal with the help of alternative medicine and faith. CHWs also highlighted religion and alternative medicine as a common practice in the community that they had to mediate while creating a space to relay conventional health information and practices:

“Some of them feel that God is going to heal them … if they pray enough or … they go to church … or something … that God is going to heal them, they don’t have to take the medicine”—CHW-IDI

In an interview, a CHW explained that immigrants face the cultural barrier of not understanding the U.S. health system, and dealing with the differences between the health system in their country of origin and the United States:

“… cultural barriers because they are also emigrating to a different society that is not like their community and not having the same beliefs that they should have an examination for prevention to avoid disease … or take medicine to cure that disease …”—CHW-IDI

Psychosocial concerns.

Women in the farmworker community described the feelings of depression and isolation while going through diagnosis processes for cancer and other illnesses:

“Thank God, I am not depressed or anything. I am only home, I lay down, watch TV and I give it my all [recovering from cancer], why should I get into depression. As they say, the mind has to be positive.”—CM-FG2-Breast Cancer Survivor

Women discussed the suffering, negative thoughts, pain and despair of dealing with illness:

“When one is sick, I think that it’s the suffering of the entire family”—CM-FG1

They also spoke about the influence of self-esteem and stress on their health due to work and their immigration status. They discussed having to uphold a strong image for their families, but this image also came at a disadvantage because it meant not having family support when they needed it. They often felt alone and without consolation from their family. One woman stated that when she went through a breast cancer scare, she had no one to vent to:

“Last year in June, I had a mammogram exam and a small lump was detected under my armpit … but during that time you have an ugly feeling because no one is giving you support.”—CM-FG1

Although the family came together when someone was diagnosed with cancer, it was hard for family members to be supportive due to a lack of information and understanding about the illness. Women described feeling unsupported at times when waiting to get results from a diagnostic mammogram or biopsy. However, some women described leaning on other women or leaders from community organizations, including lay CHWs, for support, and expressed a need for more supportive spaces for women.

The women in the FGs did not refer to anyone they knew who had breast cancer or themselves as breast cancer “survivors.” They instead discussed their own experiences of either having breast cancer diagnoses or false-positives related to calcifications to something they were confronting, in addition to the challenges faced when seeking medical attention like lack of transportation or financial strain. The women described leaning on their faith and maintaining a positive attitude to “get through” the process. There was an emphasis on needing more support for women and helping family members understand and support women with breast cancer.

CHWs expressed a need for mental health services, more coordinated care, and support groups for women who are cancer survivors and their families in the farmworker community:

“We need mental health support. How can they … after that [surviving breast cancer], go back to day to day life again.”—CHW-FG3

The CHWs also discussed women in the community dealing with depression and needing more counseling as well as better resources for understanding illness for the entire family:

“Counseling. Something in groups, maybe, the women in groups.”—CHW-FG3

Emigrating to another country and having to adapt to a new environment was also seen as a cause of depression among the community:

“Many people have problems with depression as a result of having to emigrate and adapt to another culture”—CHW-IDI

The Role of CHWs

During the FGs and interviews, CHWs stated that their main role was to provide information and support to the community. The CHWs provided insights on how they stay connected to the community and remain aware of their needs. Most of the CHWs discussed their positive relationships with the community and how they helped CWs with health and obtaining resources to improve the social determinants that affect the well-being of CWs:

“You’re like the go-to person for everything, from helping them get their kids vaccinated to helping them pay their light bill.”

The CHWs discussed their role in working with women to get them in the health center for annual doctor’s visits and screenings to prevent late stage diagnosis. The work of CHWs also informed the health centers and they were often instrumental in improving services to the farmworker community. The CHWs wished they could have better follow-up practices when there is a diagnosis so that they can provide more support, but due to Health Insurance Portability and Accountability Act (HIPAA) limitations, CHWs are not informed on patient results making it difficult to reach out to clients with a positive result. Instead, continuous mutual communication via calls and text messages with CWs to check-up on their overall well-being allows CHWs be a source of support and a bridge to follow-up services:

“We let them know what doctor to go to… what service to sign up for …”—CHW-FG

CHWs expressed that in their role they have to manage and settle various forms of information that CWs reference about health and illness. CHWs discussed receiving training in the past on different diseases and treatment management, including breast cancer. CHWs expressed the importance of their role in communicating health information both to and from community on disease prevention, treatment, and local services that could benefit the community:

“We always have to keep educating ourselves so we can keep on educating the community as much as we can”—CHW-IDI

CHWs described that they attempt to address this through support and health education efforts.

Although CHWs were knowledgeable about where the farmworker community could access breast cancer health services, they felt limited by the options that were available to low-income clients. Fear and common beliefs around breast cancer were also known to the CHW in the farmworker community around immigration status, cost, and not being able to access health services. The CHW were very aware of myths, taboos, and beliefs that the community holds around health and breast cancer. Disseminating information about the disease and resources for screening, diagnostic, and treatment services while “respecting” health beliefs and practices was important for CHWs to help CWs feel comfortable:

“We’re the ones that let them know that they are welcomed … that they do not need to fear …”—CHW-FG2

Clinical Practice Considerations and Perceptions

Our community-based study revealed key challenges regarding the relevance and applicability of existing clinical guidelines for breast cancer. The interviews with cancer clinicians and accompanying review of breast cancer clinical guidelines revealed that clinical breast cancer risk assessment tools, like the BCRAT, GAIL, and CLAUS models included in the 2015 American Cancer Society and 2020 National Comprehensive Cancer Network (NCCN) breast cancer guidelines (ACS, 2018; NCCN, 2020) provide underestimated risks for Latinx women and were deemed less applicable for the farmworker community (Banegas & Deming, 2017). CWs and CHWs discussed both lifestyle and genetic risk factors, and expressed not having enough information about either. There were also clear differences in understanding of what constituted familial risk factors. In one FG, CWs discussed receiving information and workshops from local farmworker-oriented service organizations on ways to protect and minimize cancer and other illness, and about risk factors related to the agriculture occupational exposures to the sun, pesticides, and other chemicals. Inadequate patient–doctor communication on risk factors was noted by CHWs as a key issue.

Furthermore, in understanding the available resources and experiences of the farmworker community, the narratives suggest that breast cancer national guidelines may exclude or not adequately address the context of these under-resourced groups. For example, certain national guidelines no longer recommend breast self-examinations or clinical breast exams (CBEs), but we found that for many women in the farmworker community self-exploration is often the most realistic means available for screening followed by CBEs, while screening mammograms are often out of reach in community health centers or programs that have limited funding. Currently, the South Florida farmworker community has access to two local charity-based community clinics and a Federally Qualified Health Center (FQHC) umbrella system that operates on a sliding fee scale in the area. There are two hospitals near the community; however, these are not accessible to uninsured or undocumented patients. For breast cancer screening mammography, there are few accessible options to this community. These include a free local mammography mobile unit program that only screens limited numbers of women who have no previous related diagnosis, or paying out of pocket at either a private clinic or at the local FQHC that provides imaging services on a sliding fee scale. A physical examination at either of the charity-based community clinics or FQHC would include a CBE.

The clinical professionals interviewed in our study had conflicting views on supporting self-exploration and CBEs as a means of engaging women in early detection, as well as on the age to begin screening. Two clinical professionals strongly supported the 2015 American Cancer Society guidelines that updated recommended age of the first mammogram for average-risk women from age 40 to 45 and believed that there was no need to worry people at average risk about screening earlier if they had little-to-no access to screening and primary care services. However, findings from the CHW interviews indicated that self-exploration and annual primary care visits were a pathway for clinical exams and were a beneficial opportunity to access low-cost screening mammography programs and follow-up service options when women face abnormalities. Four women in our FGs discussed seeking care for calcification in the breast and benign abnormalities they detected on their own. A dedicated CHW who worked on a screening program for the health department discussed her health education efforts in the community and disclosed that at times even men find lumps in their partners’ breasts. Some CHWs discussed helping a few women by connecting them to state-funded breast cancer screening, detection, and treatment resources in the community. The lack of information and limited access to the health system that both CWs and CHWs discussed elucidated the importance of promoting self-exploration as a general means of body awareness, and the avoidance of terms like “self-exams” that place the medical responsibility of finding a breast abnormity on the individual. Based on these considerations, the NCCN guidelines were found to be the most inclusive, comprehensive and flexible in terms of screening options for low-resourced communities, while promoting body awareness and guidelines for different ages and breast types (NCCN, 2020).

Of the three breast oncologists, one gynecologist, one generalist, and two cancer researchers interviewed, only four of these experts took into account the social determinants of health of the farmworker community, such as work demands, cost and immigration status when providing feedback on best practices for early detection and screening. One clinical professional discussed the importance of having good communication with the women in the farmworker community to increase awareness and suggested going into the community to give workshops or to offer free to low-cost screening services. While another cancer clinician stressed that the American Cancer Society guidelines were the best recommendations without discussing access issues that affect communities, across race, socioeconomic status, and other determinants. Finally, cancer clinicians also discussed health insurance coverage for breast cancer-related reconstruction.

“many women don’t know that and don’t ask for it, they have a right to ask for breast reconstruction if they want because it is and must be covered under any insurance.”— Breast Oncologist 3

We did not find this in our initial research, literature and guidelines reviewed, but one breast cancer clinician expressed the importance of making CHWs and women aware of this option.

Discussion

Our findings produced insightful information about the Latinx farmworker and CHW perceptions and understandings of breast cancer in the South Florida Latinx farmworker community. Farmworkers face unique challenges related to structural and racial inequality in accessing cancer screening, diagnosis, treatment, and survivorship support services. The narratives of Latinx farmworker realities and CHW’s community perceptions revealed key barriers related to the lack of information, social and economic barriers, fears and mistrust, cultural factors, and psychosocial concerns. Although many of the community narratives aligned with CHWs perception, CHWs provided nuanced views about their unique role in facilitating breast cancer services. The community had different perspectives on certain barriers and their doctor–patient interactions on screening and guidelines. For example, the community never expressed machismo from husbands limiting health services or doctors providing confusing information. The farmworkers and CHWs communities’ health perspectives helped to gain a better understanding of what the community faces in seeking cancer-related services.

The results highlight how CHWs working in the farmworker community understand these challenges and work to provide health information and negotiate access to services to the best of their ability, and how CHWs need more resources to carry out effective outreach and address barriers. This study underscores the importance of lay health knowledge and the benefits of having CHW-led interventions in communities. Interventions should involve trusted community-based organizations to facilitate outreach and should take into account specific understandings, beliefs, needs and resources of Latinx communities. Incorporating and considering lay knowledge in the production, practice and dissemination of breast cancer information to vulnerable groups like the farmworker community can improve health outcomes.

Our findings can serve to improve health care services and equity for communities like the Latinx farmworkers. The use of specific health assessments that address equity and access should be considered in the creation and dissemination of breast cancer informational and educational materials as well as clinical practice guidelines. Physicians and health care personnel should work closely with communities to increase cultural humility, patient trust, and structural competency of the immigration, racialized, gendered barriers (Bailey et al., 2017) for access to screening and cancer care for the Latinx farmworker community (Palmer et al., 2005). For example, more community-based approaches such as the use of CHWs, employing patient-centered strategies like the use of narrative medicine to inform clinical practice, and interventions based on shared decision-making and local needs that bring awareness on breast health and early detection information and services in the community will reduce barriers to access and utilization (Keating & Pace, 2018; Murphy, 2018). Moreover, incorporating models that consider predisposing factors, enabling factors, impeding factors, health beliefs, and social structure that are both perceived by the individual and evaluated by a health professional like the Gelberg-Andersen Health Behavior Model for Vulnerable Populations could also improve the production of breast cancer information (Aday, 1994; Gelberg et al., 2000).

These findings could be helpful to clinicians and public health practitioners in understanding ways to support breast health, the prevention of late-stage diagnosis, and breast cancer care services for unauthorized migrant farmworker and other marginalized populations. Our findings uncover the omission of vulnerable group experiences and elucidate the oversight of social determinants of health that the farmworker community and other socially marginalized and medically underserved groups face. Although there is no one-size-fits-all model, clinical breast cancer guidelines should include the perspective and consider the context of marginalized groups.

Although our findings include rich information about the perceptions of breast cancer and the importance of family members in the South Florida farmworker community, it could have benefited from narratives from family members. This study also did not include FGs with Latinx farmworker men. After several attempts to recruit male FGs, we were only able to interview three men in the farmworker community. This was a limitation of the study as more participation from men would have provided important insights into family perceptions and dynamics, social and economic barriers, and cultural factors of accessing breast cancer services in the community.

Conclusion

This study elucidates the understandings and access barriers around breast cancer in the South Florida Latinx farmworker community across the following themes: lack of information, social and economic barriers, cultural factors, fear and mistrust, and psychosocial concerns. The findings are consistent with the existing literature on breast cancer perceptions of Latinx women in farmworker communities (Baena-Cañada et al., 2014; Shelton et al., 2016) and the barriers to breast cancer services (Arcury & Quandt, 2007; Coughlin & Wilson, 2002; Link et al., 1998). This study provides a case for how a social constructionist framework aids in understanding how practiced medical knowledge may not align with the health understandings of underserved communities. Theoretically, using a constructionist framework allowed for a complimentary use of grounded theory methodology in our CBPR. The findings also demonstrate and support the integral work of CHWs in medically underserved communities that have been referenced in scholarship (Fernández et al., 2009; Roland et al., 2017). This study adds to the understanding of synthesizing lay health knowledge of marginalized groups and medical knowledge for improving breast cancer care in both clinical and community practice. The findings have implications for clinical practice and the limited applicability of clinical guidelines that should be reevaluated for more equitable health information, resources, and services across diverse populations.

Biography

Felicia Casanova is a race and immigration and health disparities researcher. She is a PhD candidate at the University of Miami in the Department of Sociology.

Felicia M. Knaul, PhD is director of the Institute of Advanced Study of the Americas, Professor at the Leonard M. Miller School of Medicine, and full member of the Sylvester Comprehensive Cancer Center at the University of Miami. She founded the Mexican non-profit organization, Tómatelo a Pecho, which undertakes and promotes research, advocacy, awareness, and early detection initiatives for breast cancer in Latin America.

Natalia M. Rodriguez, PhD, MPH, is an assistant professor in the Department of Public Health and the Weldon School of Biomedical Engineering at Purdue University. Her research applies interdisciplinary and community-based participatory approaches to understanding and addressing multilevel determinants of health disparities in vulnerable populations.