Health Care for Women International, 36:593–607, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 0739-9332 print / 1096-4665 online DOI: 10.1080/07399332.2014.973496
Examining Breast Cancer Screening Barriers Among Central American and Mexican Immigrant Women: Fatalistic Beliefs or Structural Factors? MARIA DE JESUS and EVA B. MILLER School of International Service and Center on Health, Risk, and Society, American University, Washington, DC, USA
Researchers have examined “cancer fatalism” (the belief that cancer is predetermined, beyond individual control, and necessarily fatal) as a major barrier to breast cancer screening among Latinas. The authors examine perceptions of breast cancer, its causes, and experiences with screening among Salvadoran, Guatemalan, Mexican, and Bolivian immigrant women in Washington, DC. Two salient themes emerged: (a) perceptions of breast cancer causes and breast cancer screening; and (b) structural factors are the real barriers to breast cancer screening. Findings demonstrate participants’ awareness and motivation to get screened and elucidate structural barriers that are obscured by the discourse of fatalism and hinder breast cancer screening. Breast cancer remains the leading cause of cancer death among Latinas even though breast cancer rates are lower among this group of women. Latinas are less likely than other women to get a mammography screening and are therefore more likely to be diagnosed at a later stage, when the cancer is more advanced and harder to treat. Given the disparities in breast cancer screening in the United States and the fact that there are mixed findings in the existing health-related literature on whether cancer fatalistic beliefs among this group are the main drivers impacting screening, further examination into this health issue from the emic perspectives of a diverse group of Latinas who represent different countries of origin is needed. These findings contribute Received 19 August 2013; accepted 1 October 2014. Address correspondence to Maria De Jesus, School of International Service and Center on Health, Risk, and Society, American University, 4400 Massachusetts Avenue, NW, Washington, DC, 20016, USA. E-mail: [email protected] 593
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to an international, interdisciplinary discourse on the influence of cognitive and cultural factors, including but not limited to fatalism, on cancer screening behaviors among similar demographic groups. There is a growing body of literature examining the relationship between health locus of control beliefs and different health behaviors, including cancer screening. The construct of health locus of control describes the extent to which an individual attributes responsibility for both health and illness to chance, powerful others such as God or doctors, or self (Navarro Rubio, Pearson, Clark, & Breitkopf, 2007). Internal health locus of control is commonly associated with higher self-efficacy and health promoting behaviors, while external control is thought to encourage passivity and avoidance of health promoting behaviors, leading to poorer health outcomes (Franklin et al., 2007; Roncancio, Berenson, & Rahman, 2012). A well-established dimension of external locus of control is the notion of fatalism, defined as a belief system characterized by a view of life events as predetermined, most often as a result of fate (Roncancio, Ward, & Berenson, 2011). Researchers of existing studies have cited fatalism as a cognitive, social, or cultural barrier to both cancer screening and treatment, particularly ´ among minority and lower income populations (Florez et al., 2009; LopezMcKee, McNeill, Bader, & Morales, 2008; Powe & Finnie, 2003). Fatalism has often been conceptualized in studies as a specifically Latino construct given the prevalence of the common use of expressions like “si dios quiere” ´ (“God willing”) and high levels of religiosity/spirituality (Florez et al., 2009; Greenwell & Cosden, 2009). Other authors suggest, however, that fatalism is not unique to Latinos, nor is it necessarily characteristic of this population, but rather it cuts across ethnicity/race (Flynn, Betancourt, & Ormseth, 2011; Umezawa et al., 2012). The purpose of this study is to examine Latina immigrants’ perceptions of breast cancer and its causes, and experiences with breast cancer screening to analyze whether fatalism (if indeed present) influences their cancer screening behavior.
CANCER FATALISM “Cancer fatalism” specifically refers to the belief that not only is cancer predetermined and beyond the control of the individual, but it is necessarily fatal (Abra´ıdo-Lanza et al., 2007; Lopez-McKee et al., 2008). Betancourt, Flynn, Riggs, and Garberoglio (2010) offer a useful theoretical model of the potential mechanisms between such cultural factors (e.g., fatalism) and health behaviors. Applying this model to cancer screening, Betancourt and colleagues (2010) find that fatalistic beliefs indirectly influence patient behavior by triggering “screening emotions” such as fear and anxiety that in turn reduce screening compliance.
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Studies measuring cancer fatalism among Latinas reveal mixed results. A high incidence of cancer fatalism among Latina women has been reported in recent studies (e.g., Flynn et al., 2011; Luquis & Villanueva Cruz, 2006). Several authors compare Latinas with other ethnic/racial groups, and in this way they provide evidence that fatalism is more prevalent in the Latino population than in some other groups (e.g., Flynn et al., 2011). Others only compare Latina women with White/Anglo women, without examining how fatalism might be equally present among other ethnic minorities (e.g., Betancourt et al., 2010). In one study, the authors conclude that both Latina and Black women exhibit high levels of cancer screening fatalism as compared with White women (Shelton, Goldman, Emmons, Sorenson, & Allen, 2011). Results from another study reveal that both Latina and Asian women hold stronger fatalistic beliefs than other ethnicities (Nelson, Geiger, & Mangione, 2002). The authors of only one multiethnic study conclude that Latina women hold more fatalistic beliefs about cancer than either Black or White women (Facione, Miaskowski, Dodd, & Paul, 2002). Even among these studies in which findings largely support the hypothesis that cancer fatalism is more prevalent among Latinas, several authors acknowledge a lack of significant confirmatory results when other factors are examined. For example, the authors of one study suggest that fatalism may be mediated by acculturation level and that within-group variation may exist (Nelson et al., 2002). Results from another study demonstrate that, after controlling for socioeconomic status, the association between ethnicity and cancer fatalism significantly diminishes (Betancourt et al., 2010). The authors of yet another study conclude that low socioeconomic status may actually be a stronger predictor of fatalistic beliefs than ethnicity (Shelton et al., 2011). The authors of several studies that report high levels of cancer fatalism among Latinas suggest that that these fatalistic beliefs decrease screening compliance for breast and cervical cancer (Flynn et al., 2011; Luquis et al., 2006). The authors of other studies, however, have found little evidence of an association between cancer fatalism and cancer-related health seeking behaviors such as preventive screening (Drew & Schoenberg, 2011; Fair et al., 2010; Umezawa et al., 2012). Participants in these studies agreed with some elements of fatalism, such as divine control and predetermination, but they did not associate cancer with death, a key characteristic of cancer fatalism (Lagos et al., 2008; Umezawa, 2012). The mixed results reported in these studies suggest that there is a need for further research on the presence and possible effects of cancer fatalism among Latina women. Furthermore, there are limitations in the existing literature surrounding Latina women’s fatalistic beliefs and cancer screening behaviors. One limitation is the use of measures of fatalism, such as the Powe Fatalism Inventory or the Health Belief Model, that were developed with non-Latino populations (Lagos et al., 2008). A culturally appropriate
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measure of fatalism that is sensitive to Latinos’ acculturation level, ethnic origins, and language is needed to examine whether and how fatalism manifests itself among a diverse sample of Latinos. Another limiting factor is the reliance in some studies on predominantly Mexican samples when examining cancer fatalism among all Latinas. Oversampling Mexicans may skew study findings given that this subgroup is not representative of all Latinas. It is therefore important to sample a diverse group of Latinas who represent different countries of origin. By adopting a qualitative, inductive research design, the present article fills a gap in the public health literature by examining the perceptions of breast cancer and its causes, and experiences with breast cancer screening among a sample of Latina immigrant women from different countries of origin.
METHODS Recruitment We recruited female participants using fliers posted in various communitybased organizations and social service agencies that serve a largely immigrant, primarily Latino (90%) population in the Washington Metropolitan area. Eligibility criteria follow: (a) female; (b) at least 18 years of age, and (c) born in El Salvador, Guatemala, Mexico, or Bolivia. These countries were chosen to represent the local Latino immigrant population.
Data Collection We present data from five separate in-depth focus groups with a total of 30 participants (six participants in each group). A trained bilingual research assistant conducted the focus groups in Spanish during a 4-month period (May 2011–August 2011). The research assistant was intensively trained by the principal investigator (M.D.J.) for 4 weeks in ethical research with human subjects, the research protocol, and focus group methods. Based on theoretical sampling, two focus groups were conducted with Salvadoran women because they comprise the largest Latino group in Washington, DC, one with Guatemalan women, one with Mexican, and one with Bolivian women. Focus groups are particularly useful for exploring several participants’ points of view, knowledge, and experiences, while also allowing them to raise questions and exchange ideas on a specific topic (Kitzinger, 1995). This method allowed us to capitalize on the group dynamics and make timely observations from the open communication among several participants (Kitzinger, 1995).
Focus Group Procedures The focus groups were conducted at community sites (e.g., senior center, YMCA) familiar and convenient to participants, and all participants provided
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informed consent and completed a brief demographic survey following the focus groups. This study was a part of a larger study that examined Latina immigrants’ perceptions, attitudes, beliefs, and experiences regarding health and breast cancer prevention. For the purposes of this article, we report findings related to Latina participants’ perceptions of breast cancer and its causes, and experiences with breast cancer screening. We developed a semistructured interview guide informed by the sociocontextual model (Sorensen et al., 2003). The guide explored perceptions of and experiences related to health, breast cancer and cancer screening, barriers to screening, and communication norms related to breast cancer and screening. Sample questions included the following: What first comes to your mind when you hear the words “breast cancer”? What do you think causes breast cancer? How important do you think it is to be screened for breast cancer? Discussions were audio-recorded and lasted 90–120 minutes. Participants received a $40 incentive and a meal. Approval for the study was obtained from the American University Institutional Review Board.
Analysis All audio files were transcribed in Spanish, and the Spanish transcripts were then translated into English by trained research assistants who were all highly proficient in Spanish. An independent trained research assistant then conducted a thorough line-by-line quality check on all the transcripts as she listened to each interview digital recording, editing any translation errors and ensuring that all transcripts were formatted in a standard manner prior to data analysis. The English transcripts were analyzed using thematic content analysis (Neuendorf, 2002). Through an iterative process, subsequent coding allowed the investigators (M.D.J. and E.B.M.) to collapse initial codes into higher order codes that reflected emergent themes. Following this process, an interrater reliability of 89% was achieved. Where divergent interpretations of themes occurred, we reevaluated and discussed the original transcripts until consensus was achieved. To minimize potential bias and further assess reliability and validity of the findings, an external auditor was invited to independently review the coded data and provide feedback. Suggestions from the auditor included general observations about emerging domains or possible subcategories within the domains. The investigators then further discussed the findings until consensus was achieved. Analyses also examined whether there were differences in emergent themes between the focus groups.
FINDINGS Sample Characteristics Participants ranged between the ages of 35 to 64 and were, on average, 46 years old. Most of the participants (89%) had been in the United States
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for at least 5 years, but three of them had immigrated to the United States in the last year. All of the participants had Spanish as a first language and had low levels of English proficiency. The annual household income for the participants ranged from $15,000 per year to $55,000. The majority of participants had less than a high school education (95%), while the remainder had completed some college education. None of the participants possessed a college diploma. Most women (87%) had government insurance (Medicaid/Medicare), while 3% had employer-based insurance coverage, and 10% were uninsured. Although most of the women (95%) indicated a current or past health problem, none of them stated that they currently had a cancer diagnosis or a history of cancer. All of them, however, knew of at least one family member or friend with cancer. All of the participants had undergone a mammogram before. Those who were under 40 years old received a baseline mammogram due to having a strong family history of breast cancer. About half (46%) had received a recent mammogram, and the remaining were overdue for a screening. Those who reported that they had gone for a mammography stated that they had been prompted by their health provider and had received a phone call screening reminder.
Two Salient Themes The findings presented below describe the two salient emergent themes and associated clusters of subthemes across groups. We did not find any intergroup variation on themes. The first theme reflects Latinas’ nuanced perceptions of breast cancer causes and breast cancer screening. Four subthemes are associated with this theme. There is a discrepancy between Latina immigrants’ perceptions and beliefs related to the importance of breast cancer screening and their experiences with screening. The second theme reflects the participants’ actual experiences with breast cancer screening. Four subthemes illustrate the structural or contextual factors that pose challenges to these participants in obtaining breast cancer screening services.
Perceptions of Breast Cancer Causes and Breast Cancer Screening God does not cause cancer. All of the participants acknowledged that they really did not know what caused breast cancer. None of the participants indicated that God grants ill health. This belief was clearly expressed by a participant who stated: “God does not send illnesses like breast cancer to people. He loves all of his children.” The participants did not view breast cancer as predetermined and beyond their control. Many of the women across focus groups agreed that “It [breast cancer] is caused by cells that develop.”
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Culturally constructed explanations of breast cancer. As mentioned above, all of the participants stated that they did not know what truly caused breast cancer but that there were “explanations” that floated around in the community. For example, some women brought up the idea that their grandmothers used to tell them that cancer can develop over time when “milk remains and hardens in the breast because the child has not nursed sufficiently.” Other women immediately opposed this statement, however, citing several stories they knew of women who were not mothers but had breast cancer. Other explanations included that cancer was linked to oral contraceptive use due to the change in hormones caused by the contraceptives. Others had heard that “sleeping with deodorant during the night” might cause breast cancer. Another explanation was that “it’s hereditary.” As one participant described, “If you go to the doctor and you tell them your mother died of cancer, they will tell you that it’s likely that you or one of your siblings will have cancer because your mother had it.” Other women had heard multiple stories related to breast injury, yet they expressed doubt about whether these injuries had really caused the cancer. For example, one woman recounted her experience: I heard this story from my grandmother: A papaya fell on this woman, it fell on her right breast and it gave her a bruise. She didn’t think much of it in the countryside . . . and the issue is that the lump didn’t go away completely. Until one day a year later, she went to the city to get herself looked at and they detected cancer. I don’t know if the cancer was already there and the papaya was a pretext.
Another participant shared a similar story: I have a friend. I talk to her in Mexico. She watches kids. And she said that when she was playing with a little boy the little boy hit her in the breast with his elbow and she said that’s when she started to feel the lump. She tells me to be careful so that no one hits me on my breasts.
Finally, some women referred to the idea that they had heard that cancer can develop due to one’s “manner of eating and the manner of life that you lead, say, if you’re so stressed, or, like, you smoke and drink.” Other participants agreed that it has a lot to do with nutrition: “We eat to satisfy our appetites. We don’t eat for our body and what it needs. We do not feed ourselves healthily.” Other participants added that breast cancer is due to inactivity, stating, “We are very passive, especially as Latinas we are passive. We don’t tend to exercise.” Screening is a form of cancer prevention. Several participants stated the idea that women need to be proactive in getting screened for cancer,
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implying an internal locus of control: “They give us the exam, you know, of the breasts. And if they discover it on time, well, there is no problem. But when we don’t take care of ourselves and we only check ourselves until we feel something, sometimes it is already too late.” Although the initial reaction of several participants suggested that they associated breast cancer with fear or death (mostly due to the fact that many of them knew of a family member or friend who had died of cancer), all participants acknowledged that help is available and that the prognosis is improved when cancer is detected early. The majority of participants equated early detection of breast cancer with breast cancer prevention. A few participants, however, distinguished between detection and prevention: “Ah, to detect it, but you can’t prevent it. It’s not like, ‘I’m going to take my vitamin C so that I don’t get breast cancer.’ No, there’s not something that fortifies my immune system for that.” Other participants asserted that despite more advanced technology used to find cancer at earlier stages, detecting cancer is still not the same as preventing it. When asked directly about types of cancer screening, all groups identified two types of exams: mammogram and breast self-exam. Some participants reported regular compliance with both types of breast exams while others did not. One participant claimed that many women falsely report doing breast self-exams to their doctors, suggesting that simply stating to one’s doctor that one does a regular self-check does not guarantee compliance. She argued that the focus of the checks should be on the personal benefits rather than compliance with a doctor’s orders, stating that “you are cheating yourself” by not performing regular breast self-exams. Another participant stated that mammograms are equally as important as breast self-exams and possibly more so because of the technology’s ability to detect breast irregularities that manual checks might miss. She shared her personal experience: “Neither the doctor nor I touching found anything. It only came out in the mammogram.” Another participant shared a contrasting experience in which the lump she could feel was not detected in a mammogram. Pain or negative emotions associated with screening do not deter screening behavior. Participants’ experiences with breast cancer screening also reveal their sense of agency and personal control. When asked about their experiences undergoing mammograms, several participants across groups mentioned discomfort because of physical pain or negative emotions such as embarrassment and doubt. Among these participants, however, opinions were nuanced. At one extreme were several participants who responded vociferously with expressions such as “it’s terrible!” and “oh, how hard!” when mammograms were mentioned. One participant who had experienced a particularly painful mammogram attributed the pain to a lack of skill on the part of the practitioner and her own inability to express her discomfort in English, rather than to the procedure itself.
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At the other end of the spectrum were participants who argued that the pain associated with mammograms is often exaggerated and that at most the procedure is uncomfortable. Even among participants who felt that mammograms were very uncomfortable, the pain did not seem to be a deterrent from undergoing them. As one participant stated, “Although the mammogram hurts a lot, it is important to get it done.” Similarly, none of the participants identified modesty or embarrassment as significant barriers to obtaining regular mammograms.
Structural Factors Are the Real Barriers to Breast Cancer Screening Inability to miss work or to even ask permission to miss work can deter screening. Many participants who work as informal child care providers in private homes talked about the lack of official sick days that they can take to go to their screening appointments. They also mentioned that missing work puts their employer in a predicament: “to ask permission to miss work means that that Mom or Dad can’t go to work.” Participants also cited instances from their personal experience in which they were reluctant to ask permission from their employers to visit a doctor for a mammogram or had been reprimanded for missing work because of health reasons. This challenge was also relevant to participants employed in the formal sector, who, despite receiving allotted sick days, still felt unable to request to use them because of the expectations of their employers. The supervisor of the hotel where one participant worked responded to her request for time off to get her yearly mammogram: “You only want to be at the hospital; you should just get a job there.” Unable to get permission to miss work for her screening appointment, she attended her appointment anyway and was consequently suspended from work for 3 days. Despite these challenges, several participants expressed that they viewed the benefits of complying with cancer screenings as outweighing the costs of missing work. In reference to attending a screening appointment, a Bolivian participant stated, “I think that if you want to keep working and stay healthy, you have to get your mammogram done. You have to do this for yourself.” Furthermore, another participant stressed the importance of regular and open communication with employers as the key to reconciling what often appeared to be a trade-off between work and maintaining one’s health, suggesting that some participants have found ways to overcome work-related barriers to screening. Lack of health insurance can deter screening. Lack of health insurance and difficulties in qualifying for health insurance were also cited as barriers to breast cancer screening compliance by many participants across groups. As one participant stated, “The truth is that, in my case, I don’t have insurance so
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I don’t have a primary doctor.” Another participant stated, “When I had the insurance, they did the breast cancer exam. That was 2 years ago. But now I have not gotten screened because I do no longer have health insurance. It’s expensive.” Some women had been insured in the past but for one reason or another no longer qualified for subsidized health insurance. As one participant mentioned, “Because I now make about $20,000 a year, I do not qualify for low cost health insurance.” Cost of preventive tests can deter screening. The expense of a mammogram was mentioned by several participants across groups as a significant obstacle to screening. Many participants explained that their children’s needs usually take precedence over their own preventive health care when allocating limited household funds. The high cost of health care in the United States was a theme that was particularly salient for many of the participants, who reflected on the differences between the health systems of their countries of origin and that of the United States. One participant stated that in the United States no one can be denied health care because of an inability to pay as a positive aspect of the system; however, because services are so costly here, she stated, “You spend your life in debt.” Several participants also stated that they were not always able to obtain financial assistance for health services. For example, a participant shared that although she previously received free mammograms at a clinic, she no longer qualified because of the higher level of income she earns. Lack of immigration documents can deter screening. Mexican participants, in particular, cited the lack of documentation or legal status as a significant barrier to seeking breast cancer screening and other health services. Several participants in this group expressed fear of being asked for their social security numbers or identification at a clinic or hospital. Several Mexican participants feared that being unable to provide legal documentation could potentially lead to their deportation. For example, although one Mexican participant expressed an awareness that hospitals cannot deny services based on legal status, she remained fearful of the potential legal ramifications of hospital staff knowing she was undocumented. The personal anecdotes she shared suggest that her fears were not unfounded. Her son had recently been detained by immigration services and she had also had a scare: I worked for a dry cleaning business and immigration officers arrived. My supervisor hid me in the boiler room, me and another girl. It was hot in the boiler room and it felt horrible; we were trapped for an hour in there until they left. They checked around and they took two girls.
Lack of needed resources can deter screening. Several participants shared how challenges in obtaining an interpreter deterred them from getting screened. For example, a participant recounted missing her screening appointment because she was required to remain in the waiting room until
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the interpreter arrived and the interpreter never showed up. Participants in other groups confirmed that the lack of reliable interpreter services at many medical centers is indeed an obstacle to accessing health services such as breast cancer screening. Moreover, several participants also emphasized that they lacked information about low- cost breast cancer screening and other health services available to them. These women mentioned avidly reading flyers posted in laundromats, Latino grocery stores, and bus stops that advertised reducedprice health services as well as listening to the radio for special offers. It is unclear whether these participants were unaware of government health services or simply assumed they were ineligible to access them because of a lack of legal documentation, health insurance, or both. Their lack of health services information, however, appeared directly related to their fears of the legal ramifications of being undocumented. One woman explained that she had only recently started going to the doctor despite residing in the United States for several years, saying, “I was ignorant, I didn’t know. You don’t find out. Because you’re scared, you don’t ask what you are eligible for.” Their responses conveyed a desire for more information about services and their rights to access them. As another participant aptly stated: “There [in Mexico] you move like a fish in water and you know how to get around and things like that. Here [in the United States] you have your eyes closed because you don’t know anything or what is happening.” The fact that these participants reported lacking health services information that other groups appeared to have could be interpreted as evidence of their disadvantaged status. This lack of information about available, affordable, and reputable health services might lead participants to pursue services of questionable quality. For example, one participant shared that she had refrained from visiting doctors for 2 or 3 years after being touched and spoken to inappropriately by a doctor during a pelvic exam. This participant indicated that the services being offered by this particular doctor were affordable, and she did not know where else to go for her exam.
DISCUSSION From the perspective of ethnically diverse Latina immigrants, this study allowed for an inductive and in-depth understanding of the perceptions and beliefs of breast cancer and its causes, experiences with breast cancer screening, and the structural barriers that hindered them from getting screened. Thematic content analysis facilitated the identification of salient themes and subthemes across the focus groups. Although this study exemplified the potential of qualitative content analysis as an approach to creating and analyzing knowledge critically based on the perspectives and experiences of Latina immigrants, the findings are limited in terms of generalizability.
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Despite this limitation, this article sheds light on the utility and relevance of the fatalism construct in understanding cancer screening behavior through the underrepresented perspectives of these immigrant women. It also provides useful insights for understanding how to develop effective and culturally appropriate interventions that promote cancer screening behaviors among this population by addressing structural barriers. Our study findings did not support studies that have cited fatalism as a cognitive or cultural barrier to cancer screening for minority and lower income populations (e.g., Lopez-McKee et al., 2008; Powe & Finnie, 2003). None of the participants believed that God caused cancer, and all of them articulated the importance of breast cancer screening as a way to detect breast cancer, despite the pain or discomfort associated with the test. Several of the participants connected breast cancer to one’s actions, highlighting that one needs to eat healthily, exercise more, and get screened regularly. None of the participants believed that breast cancer was predetermined. Our findings also suggest high levels of self-efficacy among participants, and. thus, evidence of an internal locus of control. In addition, there was no evidence that participants’ perceptions of cancer hindered them from getting screened, but rather they served as a cue to action, motivating them to take personal responsibility for their own health and engage in screening behaviors. Although none of the participants had been diagnosed with cancer themselves, all of them knew of someone with cancer and many of them knew of someone who had died of cancer, which made screening all the more important to them. Despite these beliefs, study findings point to the important structural or contextual barriers beyond the women’s control that create challenges for them to obtain breast cancer screening. Most of the participants are low income and have less than a high school education. All of the participants have language barriers. Several participants are uninsured and lack legal documentation, making it difficult to get screened. Cost associated with screening tests and a lack of needed resources (such as interpreters and information about affordable health services available to them) are prohibitive factors for screening among these women. On a broader scope, these findings contribute to the discourse around the influence of cognitive factors, including but not limited to fatalism, on cancer screening behaviors among groups with similar demographics. Certain cognitive processes and feelings, sometimes referred to as “screening emotions,” are commonly thought to deter screening behavior and also be strongly tied to culture (Betancourt et al., 2010; Straughan & Seow, 1998). Our study findings point to the opposite effect: While the participants in this study acknowledged negative emotions such as pain associated with breast cancer screening, they did not report that these emotions, or any other cultural values or beliefs, would prevent them from undergoing mammograms.
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In addition, these findings challenge fatalism as a simple cognitive belief or attitude that influences Latinas’ screening behaviors. The notion of fatalism obscures the extent to which Latina immigrants may be constrained by factors they cannot effectively control including economic, language, and legal factors that hinder breast cancer screening. These structural and contextual influences merit further study. Consistent with these findings, several other studies bring into question the notion of cancer fatalism and, in particular, its association with health behavior. For example, the authors of a study of Dominican women’s attitudes toward breast cancer and screening behaviors conclude that the participants’ strong association of cancer with death actually serves as a motivating force ´ to seeking screening services rather than as a deterrent (Florez et al., 2009). In addition, authors of other studies that reveal high levels of cancer fatalism among Latinas report that other barriers, such as a lack of health insurance, have a stronger influence than fatalism on screening behavior (Abra´ıdo-Lanza et al., 2007; Espinosa de los Monteros & Gallo, 2011). Other studies showing that the association of cancer with death coexists with other positive beliefs about the potential to successfully treat cancer when it is detected early suggest that fatalism and self-efficacy are ´ not opposing factors (Abra´ıdo-Lanza et al., 2007; Florez et al., 2009). A more useful approach than trying to “fit” findings such as ours into the theory of health locus of control and related constructs such as fatalism may be either to solely measure self-efficacy or instead to create an alternative multilevel health behavior model that is more specific. For example, a health behavior model that examines multiple factors at various levels (individual, interpersonal, community, social, structural) may influence cancer screening behavior would be helpful (see Sorensen et al., 2003). Moreover, authors of future studies examining Latino subgroups represent unique opportunities to advance understandings of specific contextual factors, including relevant country of origin factors, that affect the health and health behaviors of different subgroups.
ACKNOWLEDGMENT We thank the participants for sharing their insights with us for this article.
FUNDING A faculty research support grant in 2011–2012 from American University funded this research.
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Lopez-McKee, G., McNeill, J. A., Bader, J., & Morales, P. (2008). Comparison of factors affecting repeat mammography screening of low-income Mexican American women. Oncology Nursing Forum, 35, 941–947. doi:10.1188/08.ONF.941-947 Luquis, R. R., & Villanueva Cruz, I. J. (2006). Knowledge, attitudes, and perceptions about breast cancer and breast cancer screening among Hispanic women residing in south central Pennsylvania. Journal of Community Health, 31(1), 25–42. doi:10.1007/s10900-005-8187-x Navarro Rubio, R., Pearson, H. C., Clark, A. A., & Breitkopf, C. R. (2007). Satisfaction with care among low-income female outpatients. Psychology, Health & Medicine, 12, 334–345. doi:10.1080/13548500600864053 Nelson, K., Geiger, A. M., Mangione, C. M. (2002). Effect of health beliefs on delays in care for abnormal cervical cytology in a multiethnic population. Journal of General Internal Medicine, 17, 709–716. Neuendorf, K. A. (2002). The content analysis guidebook. Thousand Oaks, CA: Sage. Powe, B. D., & Finnie, R. (2003). Cancer fatalism: The state of the science. Cancer Nursing, 26, 454–467. Roncancio, A. M., Berenson, A. B., & Rahman, M. (2012). Health locus of control, acculturation, and health-related Internet use among Latinas. Journal of Health Communication, 17, 631–640. doi:10.1080/10810730.2011.635767 Roncancio, A. M., Ward, K. K., & Berenson B. (2011). Hispanic women’s health care provider control expectations: The influence of fatalism and acculturation. Journal of Health Care for the Poor and Underserved, 22, 482–490. doi:10.1353/hpu.2011.0038 Shelton, R. C., Goldman, R. E., Emmons, K. M., Sorenson, G., & Allen, J. D. (2011). An investigation into the social context of low-income, urban Black and Latina women: Implications for adherence to recommended health behaviors. Health Education and Behavior, 38, 471–481. doi:10.1177/1090198110382502 Sorensen, G., Emmons, K., Hunt, M. K., Barbeau, E., Goldman, R. Peterson, K., . . . Berkman, L. (2003). Model for incorporating social context in health behavior interventions: Applications for cancer prevention for working-class, multiethnic populations. Preventive Medicine, 37, 188–197. doi:10.1016/S00917435(03)00111-7 Straughan, P. T., & Seow, A. (1998). Fatalism reconceptualized: A concept to predict health screening behavior. Journal of Gender, Culture, and Health, 3, 85–100. Umezawa, Y., Lu, Q., You, J., Kagawa-Singer, M., Leake, B., & Maly, R.C. (2012). Belief in divine control, coping, and race/ethnicity among older women with breast cancer. Annals of Behavioral Medicine, 44, 21–32. doi:10.1007/s12160012-9358-5
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Examining Breast Cancer Screening Barriers Among Central American and Mexican Immigrant Women: Fatalistic Beliefs or Structural Factors? MARIA DE JESUS and EVA B. MILLER School of International Service and Center on Health, Risk, and Society, American University, Washington, DC, USA
Researchers have examined “cancer fatalism” (the belief that cancer is predetermined, beyond individual control, and necessarily fatal) as a major barrier to breast cancer screening among Latinas. The authors examine perceptions of breast cancer, its causes, and experiences with screening among Salvadoran, Guatemalan, Mexican, and Bolivian immigrant women in Washington, DC. Two salient themes emerged: (a) perceptions of breast cancer causes and breast cancer screening; and (b) structural factors are the real barriers to breast cancer screening. Findings demonstrate participants’ awareness and motivation to get screened and elucidate structural barriers that are obscured by the discourse of fatalism and hinder breast cancer screening. Breast cancer remains the leading cause of cancer death among Latinas even though breast cancer rates are lower among this group of women. Latinas are less likely than other women to get a mammography screening and are therefore more likely to be diagnosed at a later stage, when the cancer is more advanced and harder to treat. Given the disparities in breast cancer screening in the United States and the fact that there are mixed findings in the existing health-related literature on whether cancer fatalistic beliefs among this group are the main drivers impacting screening, further examination into this health issue from the emic perspectives of a diverse group of Latinas who represent different countries of origin is needed. These findings contribute Received 19 August 2013; accepted 1 October 2014. Address correspondence to Maria De Jesus, School of International Service and Center on Health, Risk, and Society, American University, 4400 Massachusetts Avenue, NW, Washington, DC, 20016, USA. E-mail: [email protected] 593
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to an international, interdisciplinary discourse on the influence of cognitive and cultural factors, including but not limited to fatalism, on cancer screening behaviors among similar demographic groups. There is a growing body of literature examining the relationship between health locus of control beliefs and different health behaviors, including cancer screening. The construct of health locus of control describes the extent to which an individual attributes responsibility for both health and illness to chance, powerful others such as God or doctors, or self (Navarro Rubio, Pearson, Clark, & Breitkopf, 2007). Internal health locus of control is commonly associated with higher self-efficacy and health promoting behaviors, while external control is thought to encourage passivity and avoidance of health promoting behaviors, leading to poorer health outcomes (Franklin et al., 2007; Roncancio, Berenson, & Rahman, 2012). A well-established dimension of external locus of control is the notion of fatalism, defined as a belief system characterized by a view of life events as predetermined, most often as a result of fate (Roncancio, Ward, & Berenson, 2011). Researchers of existing studies have cited fatalism as a cognitive, social, or cultural barrier to both cancer screening and treatment, particularly ´ among minority and lower income populations (Florez et al., 2009; LopezMcKee, McNeill, Bader, & Morales, 2008; Powe & Finnie, 2003). Fatalism has often been conceptualized in studies as a specifically Latino construct given the prevalence of the common use of expressions like “si dios quiere” ´ (“God willing”) and high levels of religiosity/spirituality (Florez et al., 2009; Greenwell & Cosden, 2009). Other authors suggest, however, that fatalism is not unique to Latinos, nor is it necessarily characteristic of this population, but rather it cuts across ethnicity/race (Flynn, Betancourt, & Ormseth, 2011; Umezawa et al., 2012). The purpose of this study is to examine Latina immigrants’ perceptions of breast cancer and its causes, and experiences with breast cancer screening to analyze whether fatalism (if indeed present) influences their cancer screening behavior.
CANCER FATALISM “Cancer fatalism” specifically refers to the belief that not only is cancer predetermined and beyond the control of the individual, but it is necessarily fatal (Abra´ıdo-Lanza et al., 2007; Lopez-McKee et al., 2008). Betancourt, Flynn, Riggs, and Garberoglio (2010) offer a useful theoretical model of the potential mechanisms between such cultural factors (e.g., fatalism) and health behaviors. Applying this model to cancer screening, Betancourt and colleagues (2010) find that fatalistic beliefs indirectly influence patient behavior by triggering “screening emotions” such as fear and anxiety that in turn reduce screening compliance.
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Studies measuring cancer fatalism among Latinas reveal mixed results. A high incidence of cancer fatalism among Latina women has been reported in recent studies (e.g., Flynn et al., 2011; Luquis & Villanueva Cruz, 2006). Several authors compare Latinas with other ethnic/racial groups, and in this way they provide evidence that fatalism is more prevalent in the Latino population than in some other groups (e.g., Flynn et al., 2011). Others only compare Latina women with White/Anglo women, without examining how fatalism might be equally present among other ethnic minorities (e.g., Betancourt et al., 2010). In one study, the authors conclude that both Latina and Black women exhibit high levels of cancer screening fatalism as compared with White women (Shelton, Goldman, Emmons, Sorenson, & Allen, 2011). Results from another study reveal that both Latina and Asian women hold stronger fatalistic beliefs than other ethnicities (Nelson, Geiger, & Mangione, 2002). The authors of only one multiethnic study conclude that Latina women hold more fatalistic beliefs about cancer than either Black or White women (Facione, Miaskowski, Dodd, & Paul, 2002). Even among these studies in which findings largely support the hypothesis that cancer fatalism is more prevalent among Latinas, several authors acknowledge a lack of significant confirmatory results when other factors are examined. For example, the authors of one study suggest that fatalism may be mediated by acculturation level and that within-group variation may exist (Nelson et al., 2002). Results from another study demonstrate that, after controlling for socioeconomic status, the association between ethnicity and cancer fatalism significantly diminishes (Betancourt et al., 2010). The authors of yet another study conclude that low socioeconomic status may actually be a stronger predictor of fatalistic beliefs than ethnicity (Shelton et al., 2011). The authors of several studies that report high levels of cancer fatalism among Latinas suggest that that these fatalistic beliefs decrease screening compliance for breast and cervical cancer (Flynn et al., 2011; Luquis et al., 2006). The authors of other studies, however, have found little evidence of an association between cancer fatalism and cancer-related health seeking behaviors such as preventive screening (Drew & Schoenberg, 2011; Fair et al., 2010; Umezawa et al., 2012). Participants in these studies agreed with some elements of fatalism, such as divine control and predetermination, but they did not associate cancer with death, a key characteristic of cancer fatalism (Lagos et al., 2008; Umezawa, 2012). The mixed results reported in these studies suggest that there is a need for further research on the presence and possible effects of cancer fatalism among Latina women. Furthermore, there are limitations in the existing literature surrounding Latina women’s fatalistic beliefs and cancer screening behaviors. One limitation is the use of measures of fatalism, such as the Powe Fatalism Inventory or the Health Belief Model, that were developed with non-Latino populations (Lagos et al., 2008). A culturally appropriate
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measure of fatalism that is sensitive to Latinos’ acculturation level, ethnic origins, and language is needed to examine whether and how fatalism manifests itself among a diverse sample of Latinos. Another limiting factor is the reliance in some studies on predominantly Mexican samples when examining cancer fatalism among all Latinas. Oversampling Mexicans may skew study findings given that this subgroup is not representative of all Latinas. It is therefore important to sample a diverse group of Latinas who represent different countries of origin. By adopting a qualitative, inductive research design, the present article fills a gap in the public health literature by examining the perceptions of breast cancer and its causes, and experiences with breast cancer screening among a sample of Latina immigrant women from different countries of origin.
METHODS Recruitment We recruited female participants using fliers posted in various communitybased organizations and social service agencies that serve a largely immigrant, primarily Latino (90%) population in the Washington Metropolitan area. Eligibility criteria follow: (a) female; (b) at least 18 years of age, and (c) born in El Salvador, Guatemala, Mexico, or Bolivia. These countries were chosen to represent the local Latino immigrant population.
Data Collection We present data from five separate in-depth focus groups with a total of 30 participants (six participants in each group). A trained bilingual research assistant conducted the focus groups in Spanish during a 4-month period (May 2011–August 2011). The research assistant was intensively trained by the principal investigator (M.D.J.) for 4 weeks in ethical research with human subjects, the research protocol, and focus group methods. Based on theoretical sampling, two focus groups were conducted with Salvadoran women because they comprise the largest Latino group in Washington, DC, one with Guatemalan women, one with Mexican, and one with Bolivian women. Focus groups are particularly useful for exploring several participants’ points of view, knowledge, and experiences, while also allowing them to raise questions and exchange ideas on a specific topic (Kitzinger, 1995). This method allowed us to capitalize on the group dynamics and make timely observations from the open communication among several participants (Kitzinger, 1995).
Focus Group Procedures The focus groups were conducted at community sites (e.g., senior center, YMCA) familiar and convenient to participants, and all participants provided
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informed consent and completed a brief demographic survey following the focus groups. This study was a part of a larger study that examined Latina immigrants’ perceptions, attitudes, beliefs, and experiences regarding health and breast cancer prevention. For the purposes of this article, we report findings related to Latina participants’ perceptions of breast cancer and its causes, and experiences with breast cancer screening. We developed a semistructured interview guide informed by the sociocontextual model (Sorensen et al., 2003). The guide explored perceptions of and experiences related to health, breast cancer and cancer screening, barriers to screening, and communication norms related to breast cancer and screening. Sample questions included the following: What first comes to your mind when you hear the words “breast cancer”? What do you think causes breast cancer? How important do you think it is to be screened for breast cancer? Discussions were audio-recorded and lasted 90–120 minutes. Participants received a $40 incentive and a meal. Approval for the study was obtained from the American University Institutional Review Board.
Analysis All audio files were transcribed in Spanish, and the Spanish transcripts were then translated into English by trained research assistants who were all highly proficient in Spanish. An independent trained research assistant then conducted a thorough line-by-line quality check on all the transcripts as she listened to each interview digital recording, editing any translation errors and ensuring that all transcripts were formatted in a standard manner prior to data analysis. The English transcripts were analyzed using thematic content analysis (Neuendorf, 2002). Through an iterative process, subsequent coding allowed the investigators (M.D.J. and E.B.M.) to collapse initial codes into higher order codes that reflected emergent themes. Following this process, an interrater reliability of 89% was achieved. Where divergent interpretations of themes occurred, we reevaluated and discussed the original transcripts until consensus was achieved. To minimize potential bias and further assess reliability and validity of the findings, an external auditor was invited to independently review the coded data and provide feedback. Suggestions from the auditor included general observations about emerging domains or possible subcategories within the domains. The investigators then further discussed the findings until consensus was achieved. Analyses also examined whether there were differences in emergent themes between the focus groups.
FINDINGS Sample Characteristics Participants ranged between the ages of 35 to 64 and were, on average, 46 years old. Most of the participants (89%) had been in the United States
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for at least 5 years, but three of them had immigrated to the United States in the last year. All of the participants had Spanish as a first language and had low levels of English proficiency. The annual household income for the participants ranged from $15,000 per year to $55,000. The majority of participants had less than a high school education (95%), while the remainder had completed some college education. None of the participants possessed a college diploma. Most women (87%) had government insurance (Medicaid/Medicare), while 3% had employer-based insurance coverage, and 10% were uninsured. Although most of the women (95%) indicated a current or past health problem, none of them stated that they currently had a cancer diagnosis or a history of cancer. All of them, however, knew of at least one family member or friend with cancer. All of the participants had undergone a mammogram before. Those who were under 40 years old received a baseline mammogram due to having a strong family history of breast cancer. About half (46%) had received a recent mammogram, and the remaining were overdue for a screening. Those who reported that they had gone for a mammography stated that they had been prompted by their health provider and had received a phone call screening reminder.
Two Salient Themes The findings presented below describe the two salient emergent themes and associated clusters of subthemes across groups. We did not find any intergroup variation on themes. The first theme reflects Latinas’ nuanced perceptions of breast cancer causes and breast cancer screening. Four subthemes are associated with this theme. There is a discrepancy between Latina immigrants’ perceptions and beliefs related to the importance of breast cancer screening and their experiences with screening. The second theme reflects the participants’ actual experiences with breast cancer screening. Four subthemes illustrate the structural or contextual factors that pose challenges to these participants in obtaining breast cancer screening services.
Perceptions of Breast Cancer Causes and Breast Cancer Screening God does not cause cancer. All of the participants acknowledged that they really did not know what caused breast cancer. None of the participants indicated that God grants ill health. This belief was clearly expressed by a participant who stated: “God does not send illnesses like breast cancer to people. He loves all of his children.” The participants did not view breast cancer as predetermined and beyond their control. Many of the women across focus groups agreed that “It [breast cancer] is caused by cells that develop.”
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Culturally constructed explanations of breast cancer. As mentioned above, all of the participants stated that they did not know what truly caused breast cancer but that there were “explanations” that floated around in the community. For example, some women brought up the idea that their grandmothers used to tell them that cancer can develop over time when “milk remains and hardens in the breast because the child has not nursed sufficiently.” Other women immediately opposed this statement, however, citing several stories they knew of women who were not mothers but had breast cancer. Other explanations included that cancer was linked to oral contraceptive use due to the change in hormones caused by the contraceptives. Others had heard that “sleeping with deodorant during the night” might cause breast cancer. Another explanation was that “it’s hereditary.” As one participant described, “If you go to the doctor and you tell them your mother died of cancer, they will tell you that it’s likely that you or one of your siblings will have cancer because your mother had it.” Other women had heard multiple stories related to breast injury, yet they expressed doubt about whether these injuries had really caused the cancer. For example, one woman recounted her experience: I heard this story from my grandmother: A papaya fell on this woman, it fell on her right breast and it gave her a bruise. She didn’t think much of it in the countryside . . . and the issue is that the lump didn’t go away completely. Until one day a year later, she went to the city to get herself looked at and they detected cancer. I don’t know if the cancer was already there and the papaya was a pretext.
Another participant shared a similar story: I have a friend. I talk to her in Mexico. She watches kids. And she said that when she was playing with a little boy the little boy hit her in the breast with his elbow and she said that’s when she started to feel the lump. She tells me to be careful so that no one hits me on my breasts.
Finally, some women referred to the idea that they had heard that cancer can develop due to one’s “manner of eating and the manner of life that you lead, say, if you’re so stressed, or, like, you smoke and drink.” Other participants agreed that it has a lot to do with nutrition: “We eat to satisfy our appetites. We don’t eat for our body and what it needs. We do not feed ourselves healthily.” Other participants added that breast cancer is due to inactivity, stating, “We are very passive, especially as Latinas we are passive. We don’t tend to exercise.” Screening is a form of cancer prevention. Several participants stated the idea that women need to be proactive in getting screened for cancer,
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implying an internal locus of control: “They give us the exam, you know, of the breasts. And if they discover it on time, well, there is no problem. But when we don’t take care of ourselves and we only check ourselves until we feel something, sometimes it is already too late.” Although the initial reaction of several participants suggested that they associated breast cancer with fear or death (mostly due to the fact that many of them knew of a family member or friend who had died of cancer), all participants acknowledged that help is available and that the prognosis is improved when cancer is detected early. The majority of participants equated early detection of breast cancer with breast cancer prevention. A few participants, however, distinguished between detection and prevention: “Ah, to detect it, but you can’t prevent it. It’s not like, ‘I’m going to take my vitamin C so that I don’t get breast cancer.’ No, there’s not something that fortifies my immune system for that.” Other participants asserted that despite more advanced technology used to find cancer at earlier stages, detecting cancer is still not the same as preventing it. When asked directly about types of cancer screening, all groups identified two types of exams: mammogram and breast self-exam. Some participants reported regular compliance with both types of breast exams while others did not. One participant claimed that many women falsely report doing breast self-exams to their doctors, suggesting that simply stating to one’s doctor that one does a regular self-check does not guarantee compliance. She argued that the focus of the checks should be on the personal benefits rather than compliance with a doctor’s orders, stating that “you are cheating yourself” by not performing regular breast self-exams. Another participant stated that mammograms are equally as important as breast self-exams and possibly more so because of the technology’s ability to detect breast irregularities that manual checks might miss. She shared her personal experience: “Neither the doctor nor I touching found anything. It only came out in the mammogram.” Another participant shared a contrasting experience in which the lump she could feel was not detected in a mammogram. Pain or negative emotions associated with screening do not deter screening behavior. Participants’ experiences with breast cancer screening also reveal their sense of agency and personal control. When asked about their experiences undergoing mammograms, several participants across groups mentioned discomfort because of physical pain or negative emotions such as embarrassment and doubt. Among these participants, however, opinions were nuanced. At one extreme were several participants who responded vociferously with expressions such as “it’s terrible!” and “oh, how hard!” when mammograms were mentioned. One participant who had experienced a particularly painful mammogram attributed the pain to a lack of skill on the part of the practitioner and her own inability to express her discomfort in English, rather than to the procedure itself.
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At the other end of the spectrum were participants who argued that the pain associated with mammograms is often exaggerated and that at most the procedure is uncomfortable. Even among participants who felt that mammograms were very uncomfortable, the pain did not seem to be a deterrent from undergoing them. As one participant stated, “Although the mammogram hurts a lot, it is important to get it done.” Similarly, none of the participants identified modesty or embarrassment as significant barriers to obtaining regular mammograms.
Structural Factors Are the Real Barriers to Breast Cancer Screening Inability to miss work or to even ask permission to miss work can deter screening. Many participants who work as informal child care providers in private homes talked about the lack of official sick days that they can take to go to their screening appointments. They also mentioned that missing work puts their employer in a predicament: “to ask permission to miss work means that that Mom or Dad can’t go to work.” Participants also cited instances from their personal experience in which they were reluctant to ask permission from their employers to visit a doctor for a mammogram or had been reprimanded for missing work because of health reasons. This challenge was also relevant to participants employed in the formal sector, who, despite receiving allotted sick days, still felt unable to request to use them because of the expectations of their employers. The supervisor of the hotel where one participant worked responded to her request for time off to get her yearly mammogram: “You only want to be at the hospital; you should just get a job there.” Unable to get permission to miss work for her screening appointment, she attended her appointment anyway and was consequently suspended from work for 3 days. Despite these challenges, several participants expressed that they viewed the benefits of complying with cancer screenings as outweighing the costs of missing work. In reference to attending a screening appointment, a Bolivian participant stated, “I think that if you want to keep working and stay healthy, you have to get your mammogram done. You have to do this for yourself.” Furthermore, another participant stressed the importance of regular and open communication with employers as the key to reconciling what often appeared to be a trade-off between work and maintaining one’s health, suggesting that some participants have found ways to overcome work-related barriers to screening. Lack of health insurance can deter screening. Lack of health insurance and difficulties in qualifying for health insurance were also cited as barriers to breast cancer screening compliance by many participants across groups. As one participant stated, “The truth is that, in my case, I don’t have insurance so
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I don’t have a primary doctor.” Another participant stated, “When I had the insurance, they did the breast cancer exam. That was 2 years ago. But now I have not gotten screened because I do no longer have health insurance. It’s expensive.” Some women had been insured in the past but for one reason or another no longer qualified for subsidized health insurance. As one participant mentioned, “Because I now make about $20,000 a year, I do not qualify for low cost health insurance.” Cost of preventive tests can deter screening. The expense of a mammogram was mentioned by several participants across groups as a significant obstacle to screening. Many participants explained that their children’s needs usually take precedence over their own preventive health care when allocating limited household funds. The high cost of health care in the United States was a theme that was particularly salient for many of the participants, who reflected on the differences between the health systems of their countries of origin and that of the United States. One participant stated that in the United States no one can be denied health care because of an inability to pay as a positive aspect of the system; however, because services are so costly here, she stated, “You spend your life in debt.” Several participants also stated that they were not always able to obtain financial assistance for health services. For example, a participant shared that although she previously received free mammograms at a clinic, she no longer qualified because of the higher level of income she earns. Lack of immigration documents can deter screening. Mexican participants, in particular, cited the lack of documentation or legal status as a significant barrier to seeking breast cancer screening and other health services. Several participants in this group expressed fear of being asked for their social security numbers or identification at a clinic or hospital. Several Mexican participants feared that being unable to provide legal documentation could potentially lead to their deportation. For example, although one Mexican participant expressed an awareness that hospitals cannot deny services based on legal status, she remained fearful of the potential legal ramifications of hospital staff knowing she was undocumented. The personal anecdotes she shared suggest that her fears were not unfounded. Her son had recently been detained by immigration services and she had also had a scare: I worked for a dry cleaning business and immigration officers arrived. My supervisor hid me in the boiler room, me and another girl. It was hot in the boiler room and it felt horrible; we were trapped for an hour in there until they left. They checked around and they took two girls.
Lack of needed resources can deter screening. Several participants shared how challenges in obtaining an interpreter deterred them from getting screened. For example, a participant recounted missing her screening appointment because she was required to remain in the waiting room until
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the interpreter arrived and the interpreter never showed up. Participants in other groups confirmed that the lack of reliable interpreter services at many medical centers is indeed an obstacle to accessing health services such as breast cancer screening. Moreover, several participants also emphasized that they lacked information about low- cost breast cancer screening and other health services available to them. These women mentioned avidly reading flyers posted in laundromats, Latino grocery stores, and bus stops that advertised reducedprice health services as well as listening to the radio for special offers. It is unclear whether these participants were unaware of government health services or simply assumed they were ineligible to access them because of a lack of legal documentation, health insurance, or both. Their lack of health services information, however, appeared directly related to their fears of the legal ramifications of being undocumented. One woman explained that she had only recently started going to the doctor despite residing in the United States for several years, saying, “I was ignorant, I didn’t know. You don’t find out. Because you’re scared, you don’t ask what you are eligible for.” Their responses conveyed a desire for more information about services and their rights to access them. As another participant aptly stated: “There [in Mexico] you move like a fish in water and you know how to get around and things like that. Here [in the United States] you have your eyes closed because you don’t know anything or what is happening.” The fact that these participants reported lacking health services information that other groups appeared to have could be interpreted as evidence of their disadvantaged status. This lack of information about available, affordable, and reputable health services might lead participants to pursue services of questionable quality. For example, one participant shared that she had refrained from visiting doctors for 2 or 3 years after being touched and spoken to inappropriately by a doctor during a pelvic exam. This participant indicated that the services being offered by this particular doctor were affordable, and she did not know where else to go for her exam.
DISCUSSION From the perspective of ethnically diverse Latina immigrants, this study allowed for an inductive and in-depth understanding of the perceptions and beliefs of breast cancer and its causes, experiences with breast cancer screening, and the structural barriers that hindered them from getting screened. Thematic content analysis facilitated the identification of salient themes and subthemes across the focus groups. Although this study exemplified the potential of qualitative content analysis as an approach to creating and analyzing knowledge critically based on the perspectives and experiences of Latina immigrants, the findings are limited in terms of generalizability.
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Despite this limitation, this article sheds light on the utility and relevance of the fatalism construct in understanding cancer screening behavior through the underrepresented perspectives of these immigrant women. It also provides useful insights for understanding how to develop effective and culturally appropriate interventions that promote cancer screening behaviors among this population by addressing structural barriers. Our study findings did not support studies that have cited fatalism as a cognitive or cultural barrier to cancer screening for minority and lower income populations (e.g., Lopez-McKee et al., 2008; Powe & Finnie, 2003). None of the participants believed that God caused cancer, and all of them articulated the importance of breast cancer screening as a way to detect breast cancer, despite the pain or discomfort associated with the test. Several of the participants connected breast cancer to one’s actions, highlighting that one needs to eat healthily, exercise more, and get screened regularly. None of the participants believed that breast cancer was predetermined. Our findings also suggest high levels of self-efficacy among participants, and. thus, evidence of an internal locus of control. In addition, there was no evidence that participants’ perceptions of cancer hindered them from getting screened, but rather they served as a cue to action, motivating them to take personal responsibility for their own health and engage in screening behaviors. Although none of the participants had been diagnosed with cancer themselves, all of them knew of someone with cancer and many of them knew of someone who had died of cancer, which made screening all the more important to them. Despite these beliefs, study findings point to the important structural or contextual barriers beyond the women’s control that create challenges for them to obtain breast cancer screening. Most of the participants are low income and have less than a high school education. All of the participants have language barriers. Several participants are uninsured and lack legal documentation, making it difficult to get screened. Cost associated with screening tests and a lack of needed resources (such as interpreters and information about affordable health services available to them) are prohibitive factors for screening among these women. On a broader scope, these findings contribute to the discourse around the influence of cognitive factors, including but not limited to fatalism, on cancer screening behaviors among groups with similar demographics. Certain cognitive processes and feelings, sometimes referred to as “screening emotions,” are commonly thought to deter screening behavior and also be strongly tied to culture (Betancourt et al., 2010; Straughan & Seow, 1998). Our study findings point to the opposite effect: While the participants in this study acknowledged negative emotions such as pain associated with breast cancer screening, they did not report that these emotions, or any other cultural values or beliefs, would prevent them from undergoing mammograms.
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In addition, these findings challenge fatalism as a simple cognitive belief or attitude that influences Latinas’ screening behaviors. The notion of fatalism obscures the extent to which Latina immigrants may be constrained by factors they cannot effectively control including economic, language, and legal factors that hinder breast cancer screening. These structural and contextual influences merit further study. Consistent with these findings, several other studies bring into question the notion of cancer fatalism and, in particular, its association with health behavior. For example, the authors of a study of Dominican women’s attitudes toward breast cancer and screening behaviors conclude that the participants’ strong association of cancer with death actually serves as a motivating force ´ to seeking screening services rather than as a deterrent (Florez et al., 2009). In addition, authors of other studies that reveal high levels of cancer fatalism among Latinas report that other barriers, such as a lack of health insurance, have a stronger influence than fatalism on screening behavior (Abra´ıdo-Lanza et al., 2007; Espinosa de los Monteros & Gallo, 2011). Other studies showing that the association of cancer with death coexists with other positive beliefs about the potential to successfully treat cancer when it is detected early suggest that fatalism and self-efficacy are ´ not opposing factors (Abra´ıdo-Lanza et al., 2007; Florez et al., 2009). A more useful approach than trying to “fit” findings such as ours into the theory of health locus of control and related constructs such as fatalism may be either to solely measure self-efficacy or instead to create an alternative multilevel health behavior model that is more specific. For example, a health behavior model that examines multiple factors at various levels (individual, interpersonal, community, social, structural) may influence cancer screening behavior would be helpful (see Sorensen et al., 2003). Moreover, authors of future studies examining Latino subgroups represent unique opportunities to advance understandings of specific contextual factors, including relevant country of origin factors, that affect the health and health behaviors of different subgroups.
ACKNOWLEDGMENT We thank the participants for sharing their insights with us for this article.
FUNDING A faculty research support grant in 2011–2012 from American University funded this research.
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