Racial and ethnic minorities and medically underserved groups are more likely to develop cancer and die from it than the general U.S. population (American Cancer Society, 2009). Statistics indicate that this is true for Latinos in the U.S.
For example, though the age-adjusted incidence of breast cancer in Latinas is lower than in non-Hispanic Whites (U.S. Cancer Statistics, 2009). Latinas are 20% more likely to die of breast cancer than non-Hispanic White women diagnosed at a similar age and stage. Differences in access to care and treatment likely contribute to this disparity (Cancer Facts & Figures, 2009).
Disparities in cancer are caused by the complex interplay of low economic class, culture, and social injustice, with poverty playing the dominant role (Freeman, 2004). The goal of this article is to improve rates of cancer screening and cancer outcomes by increasing the medical community’s understanding of this complex interplay as it specifically relates to the Latino population who are immigrants and/or have limited financial resources.
The author interviewed twelve healthcare professionals involved in providing cancer care to Latinos in the Seattle area. Physicians, nurse practitioners, social workers, and patient navigators were interviewed. Four of these providers are Latino themselves. Eleven of those interviewed provide care at a regional safety net hospital. Because the majority of the informants provide care at this type of facility, much of the information below may be more relevant to Latinos who have recently immigrated or have lower socioeconomic status. The information gained in these interviews was combined with published literature regarding Latinos and cancer prevention and treatment.
The Latino Population
For this article, the term Latino refers to a linguistic community, not a community that necessarily shares one culture. Latinos are an extremely diverse group with ancestry originating in the countries of Central America, South America and the Caribbean. In the U.S. the major Latino subgroups have origins in Mexico, Cuba, Puerto Rico, and Central America (Chong, 2002). In Washington State people of Mexican descent are the largest subgroup, making up 33.7% of the state’s Latino population in 2000 (Kirschner, 2006). It is important to remember that even within these sub-groups, Latinos vary greatly in their ancestry. They may trace their origins back to indigenous groups, settlers from outside Latin America, or a combination of the two.
It is important not to simply generalize. Be aware of some of the overall cultural values of the community and then explore the pertinent themes as they relate to providing health care for individual Latino patients. There is great diversity within this community.
The Latino population has increased dramatically in recent decades. Since 2000, over half the growth in U.S. population has been due to Latino births and immigration. In 2007 Latinos were estimated to be 15.1% of the total U.S. population. In addition, starting in the 1990s, Latinos have moved out of their traditional areas of settlement and dispersed more widely throughout the United States (Fry, 2008). The population growth and change in settlement patterns, coupled with disparities in Latino health, have challenged health care providers across the country to provide high-quality care for this growing population.
Influence of experience with medical care in home country
For those Latinos who have emigrated from another country, expectations about medical professionals and services based on experiences in the home country may affect health-seeking behaviors.
In Mexico, the poor have limited access to health care. Some Mexican immigrants may wonder how they could access care in the U.S. if they couldn’t access it back home.
Patients are not used to getting attention to their health care needs in their home country. When they come here and receive medical attention, they become interested and engaged but the system confuses them.
Mexico’s poor are likely to see a pharmacist or faith healer when they have ailments. Pharmacists may recommend over-the-counter medications, some of which are prescription-only in the U.S.
Patients generally expect slow delivery of service. They have decreased confidence that providers will really help, especially if the patient is poor. For this reason, patients may feel less confident about U.S. providers who are Latino.
Physicians in Mexico are revered: “What is said is done, no questions asked.” Questions are not asked for fear of insulting the provider. This includes questions about the patient’s prognosis.
Patients from Mexico and many underdeveloped countries are accustomed to providers who wear white coats. American providers who dress casually may have to prove themselves more. There are exceptions to this.
Cancer incidence among Latinos in the United States varies depending upon a number of factors, including (Cancer facts & figures, 2003):
- Regional, behavioral, genetic differences
- US or foreign born
- Country of origin or heritage
- Degree of acculturation
- Socioeconomic status
Interestingly, cancer burden among Latinos in the United States is similar to the burden they would experience in their country of origin (Cancer facts & figures, 2006). This may change, and begin to resemble the overall burden in the United States, as generations away from immigration increase (Cancer facts & figures, 2003).
While reading the information below, please keep in mind that numbers may mask many of the differences mentioned above (Cancer facts & figures, 2006).
Epidemiology: A sampling of cancer sites
Female Breast Cancer
Breast cancer is the most commonly diagnosed cancer among women in the United States. This is also true among Latinas. Yet the age-adjusted incidence of breast cancer in Latinas is lower than in non-Hispanic Whites (U.S. Cancer Statistics, 2009). Possible reasons for the lower incidence include: younger age at first pregnancy, a greater number of children, high rates of breast feeding, and a lower use of hormone replacement therapy. The lower incidence also reflects rates in Latin American countries, including Cuba and Puerto Rico (Cancer Facts & Figures, 2006).
When Latinas are diagnosed with breast cancer, it is more frequently at an advanced stage. This likelihood of diagnosis at an advanced stage is present even when education level, income, and detection method are controlled factors (Lanz et al., 2006). Potential reasons for delayed diagnosis include: less access to mammography screening, lower confidence in the value of screening and use of mammography, longer intervals between mammograms, and delayed follow-up for abnormal results (possibly due to economic factors and fear and denial of disease). Fortunately, breast cancer screening among Latinas is increasing. Yet even when diagnosed at a similar stage and age, Latinas are 20% more likely to die of breast cancer than non-Hispanic White women (Cancer Facts & Figures, 2009).
In contrast to breast cancer, Latinas have twice the age-adjusted incidence rate of cervical cancer when compared to non-Hispanic Whites. Rates of cervical cancer screening are traditionally low among Latinas, but increasing. Dividing Latinas by their country of origin, Mexican Americans and Puerto Ricans have twice the cervical cancer risk as Cuban Americans. The mortality rate among Latinas from cervical cancer is 50% higher than in non-Hispanic Whites. This higher mortality rate has been attributed to the lower rate of screening and inadequate follow-up after abnormal pap tests (Cancer Facts & Figures, 2009). It is unknown whether cervical cancer knowledge is increasing among Latinas with the introduction of the HPV vaccine, which includes public outreach messages in Spanish.
There is much less information available about Latinas and ovarian cancer, in part due to the rarity of the disease. In 2005, the age-adjusted incidence among Latinas was 10.9 per 100,000. This is compared to 12.9 per 100,000 for non-Hispanic Whites. The death rate from ovarian cancer in Latinas was 6.1 per 100,000 in 2005, compared to 9.0 in non-Hispanic Whites and 8.6 for all races (U.S. Cancer Statistics, 2009).Similar concerns exist with ovarian cancer as with other cancer care for Latinos, such as whether Latinas are diagnosed at a later stage and/or receive less optimal treatment than non-Hispanic Whites.
Similar to female breast cancer, the age-adjusted incidence of prostate cancer among Latinos is lower than in non-Hispanic Whites. Yet Latinos are more likely to have their prostate cancer diagnosed at a later stage. Even when diagnosed at the same stage and age, Latinos are more likely to die than non-Hispanic Whites (Cancer Facts & Figures, 2010). Potential reasons for this disparity include: less access to care and screening opportunities (including lack of insurance), low uptake of screening tests (especially digital rectal exam), less understanding of the treatment options, less trust in traditional medicine, concern over side effects, denial of illness or vulnerability, and inadequate monitoring by health care professionals. Inadequate monitoring was investigated in 2004 by Shavers et al. who found that Latinos were less likely than non-Hispanic Whites to be adequately monitored during “watchful waiting” (Shavers et al., 2004). The death rate from prostate cancer among Latinos decreased 3.2% per year from 1994-2003 (Cancer Facts & Figures, 2006).
Regarding the uptake of the digital rectal exam, the account of personal experience by one medical interpreter and focus group findings suggest that some Latino men may consider the digital rectal exam (DRE) to screen for prostate cancer to be extremely invasive and associated with homosexuality due to penetration of the rectum. There may be intense resistance to DRE. For more information, see below Issues Related to Digital Rectal Exam and Colorectal Cancer Screening in the section Barriers to Cancer Screening, Early Detection and Cancer Care.
Regarding the issue of denial, Latino men may view illness as weakness, equate manhood with strength, and may delay treatment or routine care for fear of appearing weak. Focus group data from a study done by Bastani, Gallardo and Maxwell (2001) supports information gleaned from our interviews. Among Hispanic men who participated in focus groups, the shame of seeming sick or weak was described as a major deterrent to colorectal cancer screening.
While prostate cancer is the most common cancer found in Latino men, and breast cancer is the most common cancer found in Latinas, colorectal cancers are the second most commonly diagnosed cancer in both Latino men and women (American Cancer Society, 2009). Colorectal cancer incidence rates among Latino men and women are 15% and 19% lower respectively than those among non-Hispanic whites. However, rates among Latinos in the U.S. are higher than those among residents of Puerto Rico and Spanish-speaking countries in South and Central America. Colorectal cancer rates are higher in more affluent countries like the U.S. due to diets that are higher in fats, refined carbohydrates, animal protein and lower levels of physical activity. Colorectal cancer is the second-leading cause of cancer death among Hispanic men and the third leading cause of cancer death among Hispanic women (American Cancer Society, 2009).
For Latino men, there is evidence in published literature that suggests that the may be resistance to screening endoscopy for colon cancer due to taboos about penetration of the rectum. For more information, see section Issues Related to Digital Rectal Exam and Colorectal Cancer Screening.
Hispanic men and women are twice as likely to have, and to die from, liver cancer (Office of Minority Health, 2011). Latinos’ liver cancer rates are on the rise and increasing rates of obesity and diabetes in this population may be contributing factors.
National liver cancer rates among Latinos grew from 1.7 cases to 5 cases per 100,000 from 1980 to 2005, to a current rate of 7.5 cases per 100,000, according to data presented at a recent American Association for Cancer Research (AACR) conference by Dr. Amelie Ramirez, director of the Institute for Health Promotion Research at the University of Texas Health Science Center at San Antonio (Latinos’ Liver Cancer Rates Are on Rise, 2011). The researchers found that Latinos accounted for about 33% of liver cancer cases in Texas and 75% of cases in South Texas, an area that is almost 70% Latino. The rates in these regions were higher than the rate of 7.5 per 100,000 among Latinos nationally, with a rate of 9.7 per 100,000 for Texas and 10.6 per 100,000 in South Texas.
This study found corresponding increases in the prevalence of diabetes among Texas and South Texas Latinos (Ault, 2011), which is consistent with evidence from a New England Journal of Medicine review that suggests that fatty liver disease and metabolic syndrome may be significant risk factors in Western countries (El-Serag, 2011).
Barriers to Cancer Screening, Early Detection and Cancer Care
There was consensus of those interviewed for this article that the most significant issues patients Latino patients with cancer face are financial, transportation, and immigration. These and other issues such as language, health literacy, and lack of experience with preventive care are discussed below.
Many uninsured and underinsured Latino patients are in survival mode. Basic needs, such as keeping food on the table and paying for housing consume their daily lives. Many are on the edge of being homeless and some are, in fact, homeless.
Preventive care is viewed as a luxury and as one Latina health care provider stated, “If you don’t have money for treatment, you don’t want to know if you’re sick.” This attitude may be reinforced by past experiences in Latin American countries, where treatment for cancer was unavailable due to lack of financial resources. For many people, healthcare in Latin America was inaccessible and unaffordable, and many experience the same situation in the U.S.
The Breast, Cervical and Colon Health Program in Washington State provides comprehensive free screening for breast, cervical cancer and colon cancer, but this is a limited program, and many immigrants are unaware of the program.
For working Latinos, taking time off of work is difficult. If not experiencing pain, patients find it hard to go to the doctor due to work, income loss and concerns about the medical bill. Undocumented workers who are sick especially worry about being fired for missed days. In addition, Latinos may not want to go to the doctor for fear of a scary diagnosis which may mean emotionally and financially burdening their family. Uninsured and underinsured Latinos may often wait until they are extremely ill before visiting a physician. If children are sick, however, they will be taken to the doctor, regardless of financial or practical constraints.
Undocumented Latinos may face the biggest challenge when diagnosed with cancer as they do not have access to high-end care or services that are not covered by the Alien Emergency Medical Program (see below), nor are they likely to risk taking time off from work to travel outside their area to see specialists if necessary.
Limitations of Public Assistance
Though there is a public assistance program available to undocumented patients and other non-citizens, it is restricted to those with acute and emergent conditions. Cancer is one of the qualifying conditions. The Alien Emergency Medical Program (AEM) benefits are limited and the system is difficult to navigate. It takes a while to process the paperwork for AEM but this does not prohibit patients from receiving treatment.
Documented patients who are ill and can’t work can go on welfare plus Medicaid. This is called short-term general assistance. They receive $330 a month and medical benefits and a 13-week disability certification. At time of publication, this program is at risk of being abolished.
Patients with “green cards” are not eligible for federal aid programs for 5 years.
Providing basic needs is so consuming that few have time to go to support groups or to delve into the psychological aspects of having cancer.
Lack of Health Insurance Coverage
In 2007, 32.1% of Latinos in the United States lacked health insurance (Centers for Disease Control, 2008). Although there are a number of preventive services available at free or reduced cost, patients and providers are not always aware of these services. In addition, those without health insurance may see no point in being screened for a disease they do not have the finances to treat. Although financial assistance for cancer treatment is available in the United States, patients are often unaware of this availability until after diagnosis when they meet with a financial advisor or social worker. When faced with the possibility of a cancer diagnosis through screening, Latinos may choose instead to wait for symptoms to appear.
Latinos without health insurance are less likely to have a regular source of care, which is an important predictor of screening behavior (Selvin & Brett, 2003; Devoe, Fryer, Phillips, & Green, 2003). People with a trusted source of care that they access regularly are more likely to be referred for screening services (Atlas, Grant, Ferris, Chang, & Barry, 2009). Referral by a provider has been shown to be an important part of adherence to the screening guidelines for Latinos (Shueler, Chu, & Smith-Bindman, 2008). In Salazar’s (1996, p. 443) research in Washington State, a Latina commented, “If the doctor fails to give the information to the women, they will not get their mammograms. On the other hand, when the doctor tells the woman to go get a mammogram, they will make an effort to comply.” This same article notes that many of the women, due to both socioeconomic and cultural factors, do not see a health care provider regularly and therefore would not have preventive services recommended to them.
Uninsured patients are more likely to be treated for cancer at late stages of disease, and they’re more likely to receive substandard care (American Cancer Society, 2009).
If patients are on Medicaid or AEM, they can get assistance with transportation to appointments and can arrange it themselves. Patients on Medicare do not get assistance with transportation and may find taking a bus to appointments nearly impossible when feeling ill. If Medicaid or AEM is pending, rides must be arranged by a social worker. But, when registered, the patient can arrange the transportation.
Because many Latinas are home with kids, women with preschool aged children who are undergoing cancer treatment often bring their children with them to medical appointments. They have no access or funds for childcare.
Some undocumented patients are concerned that INS will be called by hospital personnel or DSHS. Occasionally, fake ID numbers will be used or people will share ID numbers rather than risk deportation. Patients who have been referred by other medical facilities may feel less fearful of being reported.
Lack of Experience/Familiarity with Prevention and Screening
Preventive services such as screening mammograms and pap tests may not be commonly available in many resource poor countries in Latin America, though this can vary. In interviews with women of Mexican origin, one woman described herself as being “nervous because in Mexico I had never heard of that being done to someone.” (McMullin, De Alba, Chavez, & Hubbell, 2005, p. 12). There is no exact word in Spanish that directly translates as “screening” though a conceptual equivalent can be communicated with words like “exploracion” (exploration) and “estudio exploratorio” (exploratory study). In Chile, which is one of the more stable and prosperous nations in South America, use of non-diagnostic mammograms is a relatively new phenomenon (Fred Hutchinson Cancer Research Center, 2010). Previously, only women who had a clinical breast exam with positive findings would receive a mammogram, so there may be a lack of familiarity with the concept of mammograms that screen for disease. Pap tests on the other hand, are done routinely in Chile, and in Cuba pap tests are free and are common.
Formal health care in many Latin American countries is often accessed when symptoms arise, such as a lump in the breast or abdominal pain (Chong, 2002). This same behavior may be present in Latinos in the United States, particularly recent immigrants.
As an example, in interviews with Latinas in Washington State, one woman explained, “If I felt something was wrong, if I was sick, then I would go to a doctor. I feel fine so why should I go have this exam? I just feel no need for it.” (Salazar, 1996, p. 441).
Based on a study of the health beliefs of 20 immigrant women from Mexico who have been living in the U.S. on average longer than 15 years and perceptions of some health care providers interviewed for this article, some Latinas with limited health literacy may believe the purpose of a pap smear is to evaluate for infection, not to assess for cervical dysplasia. Therefore they may seek services only when they are concerned about an infection (McMullin et al., 2005).
Concern about the pain and discomfort associated with preventive procedures has been cited as a deterrent for Latinas (Schueler et al., 2008). This was also mentioned by our informants and may be true for some Latinas, as well as women of any ethnicity. Yet in Salazar’s (1996) interviews, pain was not a factor that prevented the Latinas from having a mammogram. This concern is often alleviated as women become more familiar with the tests through community members, health care providers, or public health campaigns. It can also be alleviated when the tests are done in comfortable and culturally appropriate settings.
Issues Related to Digital Rectal Exam and Colorectal Cancer Screening
The account of personal experience by one medical interpreter and focus group findings suggest that some Latino men may consider the digital rectal exam (DRE) to screen for prostate cancer to be extremely invasive and associated with homosexuality due to penetration of the rectum. There may be intense resistance to DRE. As one Latino man interviewed for this article explained: “Some men may fear that DRE will cause them to develop an interest in homosexuality.” In focus groups conducted with Latinos from U.S. cities along the Texas-Mexico border, men and women felt that most men would be embarrassed about endoscopy for cancer screening and would reject it because “…men do not do that.” Two men said that these types of tests were especially embarrassing for Mexican men. One focus group participant suggested that CRC testing was a violation of his manhood and an insult to his virility. Another man jokingly added that many men would go untested because they would think, “I may die, but I’ll die a virgin.” (Fernandez, Wippold, Torres, Byrd, Freeberg, Bains, Guajardo, Coughlin, & Vernon, 2007). Another study done in 2001 reported similar comments among focus group participants. A male participant commented, “I am a macho man; I don’t like anybody to look at my rectum, that is the truth. If I were a woman, women are more use[d] to it.” (Coronado, Farias, Thompson, Godina, & Oderkirk, 2006).
Educating patients about the purpose and importance of DRE and screening endoscopy for colon cancer may help to alleviate potential stigma and fear associated with these screening methods. Contrastingly, one seasoned medical interpreter described the challenge with DRE as a matter of patient education and was unaware of a stigma or fear being expressed by patients. Another interpreter noted some providers were especially successful in educating patients and alleviating any fear they may have about DRE by explaining that the doctor has done this procedure thousands of times, it can be done quickly, the patient can think about it and revisit the idea of doing the test at a future appointment, and the interpreter can step out of the room during the exam.
Health literacy is the ability to obtain, process, and understand basic health information and services to make appropriate health decisions and is essential to promote healthy people and communities.Health literacy is lowest among the more vulnerable members of our communities—those with lower education levels, racial/ethnic minorities, the uninsured and publicly insured, and the elderly (U.S. Department of Health and Human Services, 2008).
Low health literacy adversely impacts cancer incidence, mortality, and quality of life. Many factors influence health literacy, including reading level, numeracy level, language barriers, cultural appropriateness, format/style, sentence structure, use of illustrations and interactiveness of an intervention. People impacted by low health literacy may struggle to understand disease, prevention, and treatment.
Barriers to Asking Questions
Physicians interviewed for this article commented that patients are not forthcoming with questions and sometimes ask questions of interpreters or patient navigators after the physician has left the room. This could be symptomatic of a cultural barrier between a Latino patient and an American medical provider, and a “cultural sameness” shared by interpreter and patient. As well, how and when questions are asked can be related to the question of authority and the power differential between a patient and provider. Patients may not ask questions because they may not feel that they have the right. When multiple treatment options are presented, often patients expect the doctor to decide the best treatment plan for the patient. A patient may be thinking, “I do not know the medicine to decide.” If patients are expected to adopt the underlying principles of “patient centered care,” doctors should make clear the method and the alternatives. Low health literacy can also impact the ability to formulate questions even when a patient is encouraged to do so, especially in encounters where a large amount of information is received and the patient and family are overwhelmed. Physicians interviewed for this article suggest that reticence to ask questions is a combination of these factors and they suggest that providers encourage patients to ask questions throughout the office visit.
Fear and Lack of Knowledge Regarding Cancer Survival
The diagnosis of cancer in many Latin American countries often means “a death sentence.” This is particularly true for people with few financial resources and is reflected in this statement by a Latina: “One knows clearly, cancer is something big, true? And something fatal.” (Salazar, 1996, p. 441). Latinos unfamiliar with treatment options may not be aware that it is possible to survive cancer. Terms such as “pre-cancerous” can be misunderstood and confused with the diagnosis of cancer. Fear and denial are common emotions when faced with the prospect of being diagnosed with any life-threatening illness. In the case of reproductive or breast cancers, individuals may fear the discovery of these cancers and worry about seeming defective or less feminine or masculine to a partner. With breast cancer, there may be a fear of disfigurement. These emotions, combined with the cost of healthcare, limited accessibility, and the daily need to care for a busy life, may lead many patients to postpone screening services.
Misinformation from family and friends
Like many immigrant groups, poor Latinos may live in communities with other people from their country of origin. Family members may live in proximity and see each other regularly. Collective decision-making may be a common practice for some of these families. In this environment, particularly when there is a language barrier, individuals may receive health care information from members of their community rather than professional health care providers. This information may not always be accurate. One example given by an informant was that when a person is diagnosed with cancer they often hear stories from community members of others diagnosed with cancer from a different primary site. It is often unclear what type of cancer is being discussed. It is only known that they have “cancer.” This leads to confusion regarding treatments, side effects and survival. To further complicate matters, patients who come from developing countries with communicable diseases that are common — such as tuberculosis — may encounter fear from community members that the cancer is contagious.
Non-English speaking Latinas are significantly less likely to access preventive services (Hiatt et al., 2001). Language ability is also related to acculturation (Schueler et al., 2008). When services are not offered by a Spanish-speaking provider, or with interpreter services, Latinos may not understand the purpose of the test. They may also feel disenfranchised from the experience. Providers who speak Spanish, but not proficiently enough for good communication, may think they are appropriately communicating when they are not and their patients may not feel comfortable asking for clarification. Public health campaigns focused on preventive services may not be translated into Spanish, although campaigns in Spanish are increasing as the Latino population increases throughout the United States.
Gender and Cultural Issues Related to Women’s Cancers
Role change — caregiver to care receiver
In Latino cultures the woman is usually the primary caregiver, responsible for the home and children. She may have strong feelings toward her responsibility as a mother (Buki et al., 2008). As explained by a Latina, “As caregivers, we worry about those who depend on us because if something happens to us, who would care and provide for our family, children, parents, etc. who totally depend on us?” (Ashing-Giwa et al., 2004, p. 417). When a woman is diagnosed with cancer and enters treatment, her role is changing from someone who gives care to someone who needs care. In addition to keeping multiple appointments, the side effects from therapy such as nausea and fatigue may keep a woman from her established role in the family. She may be hospitalized for periods of time. For many women, this may seem disastrous. Latino men may have little to no knowledge of household responsibilities such as cooking or caring for the children and may be resistant to helping with these for fear of being teased by family and friends for doing “women’s work.” These role changes create stress in families. It is important for the provider to involve and inform spouse and family about what the needs of the patient will be as she undergoes treatment and how they can help and support her.
Within Latino cultures, a strong value is placed on strength and the ability to survive. This strength is threatened when a diagnosis of cancer is made. With the stress of diagnosis and treatment, a woman may feel that she is unable to care for her family in the way she desires. She may also be uncomfortable receiving care and may struggle with this new aspect of herself. It is common for Latinas with family responsibilities to under-medicate when in pain in order to function at home.
Importance of female organs
Many Latinas express a deep sadness over losing their breasts or uterus (Ashing-Giwa, Padilla, Bohorquez, Tejero, & Garcia, 2006). These body parts represent the female part of them and their ability to fulfill an important role, that of mother. One of our interviewees, a Latina herself, explained that losing the uterus is often more profound for a Latina than losing a breast. “It is the biggest and most painful.” The loss of a breast or the uterus may affect relationships with male partners, who also see these parts as defining a woman’s identity. Consider these remarks by a Latina, “To them [Latino men], a woman is not considered as a complete woman if she’s missing a body part, and in this case it’s more pronounced because the missing part is considered to them a part of femininity.” (Ashing-Giwa et al., 2006, p. 40). This statement also reflects the woman’s fear that she will be left alone, possibly with children to care for, if the female parts of her body are removed.
Several of our informants stated that domestic violence or separation from a partner is a concern for women diagnosed with breast or cervical cancer. This was found by Ashing-Giwa (2006, p. 40) also, as seven of the twenty-six women interviewed were left by their husbands after their diagnosis. One of the women explained, “It’s very difficult when a man abandons you because your physical appearance has changed and he doesn’t consider you a woman anymore.” These very serious factors make a woman’s decision to undergo a hysterectomy or mastectomy even more complex, as removing the parts of her body that her partner considers feminine may make her vulnerable to violence or separation.
Sexual intimacy may be an issue for women undergoing cancer treatment or who have had surgery. This may lead to a woman’s reluctance to be intimate with her partner, adding to stress in the marriage.
It is important to know that reconstructive breast surgery can be financially prohibitive as the patient must have ongoing coverage for the procedure, and this requires more appointments, treatment and recovery.
Gender and Cultural Issues Related to Men’s Cancers
Image as a strong and capable provider
Men who act as head of household may be afraid that a diagnosis of cancer will make them appear weak to their family and will interfere in their ability to care for them. Fears about time missed from work, loss of income, inability to support dependent family back home, unaffordable medical care, and overwhelming language and cultural barriers, may cause men to delay seeing the doctor until they are very sick. If diagnosed with a serious illness, a man may keep the illness from loved ones as long as possible for fear of burdening them. This may cause feelings of isolation, loneliness, and depression and may affect his treatment and healing process.
An association of male organs with masculinity may lead some men to worry that treatment for genitourinary cancers will cause genital mutilation, sterility, and impotence. Misinformation from friends and family and a lack of knowledge about cancer treatments may lead to considerable fear regarding cancer treatments. Men may delay seeking evaluation or treatment due to fears that treatment will render them sterile or prevent them from being intimate with their wives or partners and may change their role within the household.
Some men may be embarrassed to bring up issues related to sexuality. Others might worry, feel guilty, or desire to confess about having had unprotected sex with street prostitutes. For some people, there may be a perception that being sick was caused by doing a social misdeed.
Providers need to take the time to educate men about cancer diagnosis, treatment, and provide adequate counseling to alleviate unfounded worries and help patients get prompt treatment.
Beliefs about Causes of Cancers
Physical and Psychological Trauma
Some Latinas, particularly recent immigrants or those with low health literacy, may suspect physical trauma as the cause of cancer. For instance, if a breast has been bumped, this may be thought to explain a lump that has formed (Hubell, Chavez, Mishra, & Valdez, 1996; Chavez, Hubbell, McMullin, Martinez, & Mishra, 1995). In cervical cancer, trauma during childbirth or intercourse may be a suspected cause (McMullin et al., 2005). As one of our informants discussed, attributing a breast lump to trauma is one way a woman can convince herself that the lump is not serious. This may help her rationalize delaying care, particularly when there are more urgent daily needs.
Trauma can also be psychological. Attributing cancer to psychological trauma adds a complex layer to an already serious situation of a cancer diagnosis. Some may believe that having a difficult relationship with a partner or leading a difficult life can cause cancer. One informant told the story of a woman diagnosed with cancer who believed her husband’s infidelity contributed to her illness.
Some may believe that experiencing a frightening or traumatic event can lead to cancer. Susto is the Spanish word that refers to “fright sickness.” Susto is regarded by the Diagnostic and Statistical Manual of Mental Disorders-IV as a culture-bound syndrome. It is the belief that if you are frightened, you are vulnerable to opportunistic illness. One of the reviewers of this article, a medical interpreter, has seen patients attribute diabetes, cancer, and other illnesses to susto.
It is important for the provider to ask the patient how they would deal with this illness in their culture or home country. Patient adherence increases with the understanding of beliefs.
Some Latinas may believe their diagnosis of cancer is punishment for sins in the past, such as premarital sex. Chavez et al. (1995) found that Mexican and Salvadoran women discussed alcohol and illegal drug use as breast cancer risk factors. One Mexican woman stated, “…cancer can originate from the bad life that one leads, sexually (Chavez et al., 1995, p. 54).” Yet the role of morality is complex, as seventeen of twenty women in a study done by McMullin et al. (2005) disagreed with the statement “God gives people illnesses like cervical cancer because they have lived a bad life.” It is important to assess the role morality plays in an individual’s cancer diagnosis, as well as the reaction of their friends and families, and take this into consideration when caring for them.
Knowledge about Human Papilloma Virus (HPV)
HPV knowledge is limited among both Latinos and the general population of the United States. This knowledge is likely increasing with the introduction of an HPV vaccine in 2006. Multiple partners put a woman at increased risk for infection. Even when Latinas have no knowledge of HPV, they may believe that multiple sexual partners is a cause of cervical cancer (Vanslyke et al., 2008). Knowledge among Latinas will likely increase, as patient information is available in both Spanish and English. The increase will predictably be more pronounced in Latinas who are more acculturated and see a health care provider regularly.
Recommendations For Providers
Individuality vs. Culture
- Remember that patients are individuals and are not defined by their cultural group.
- Understand individual fears. Explore what kind of information you can give to help alleviate those specific fears.
- If you know a little Spanish, it is appreciated if you speak a few words of Spanish with the patient, such as “Hello.” or “Nice to meet you.”
- However, use an interpreter if you are not a native Spanish speaker or are not certified as a medical interpreter. Patients who do not understand their Spanish-speaking physicians will rarely speak up if the provider is not understood. This may lead to a loss of confidence in the provider’s skills.
- If the patient speaks English as a second language, unless you are confident that the patient is fluent, use an interpreter.
- If you are a native Spanish speaker and are not using an interpreter, be sure to match the level of the patient’s vocabulary when discussing medical issues.
- When using an interpreter, talk directly to the patient. Avoid using idioms, as the law states that translation must be exact and misunderstandings can result.
Building Trust and Establishing Rapport with Patient
- The Latino culture is a warm one. Invest a little time at the beginning of an encounter asking about patient and family. Tell the patient that you are glad to see him/her. Engage in good eye contact and focus your attention on the patient. Avoid inputting information on the computer while speaking to the patient. Show the patient that you care. Provide written medical information whenever possible about the patient’s condition (MedlinePlus is a great resource for Spanish materials). At the close of the encounter, ask the patient if he/she has any questions and tell the patient what you will discuss at the next visit.
- Reach out and touch patients who are upset or crying.
- Be aware of modesty concerns for female patients seeing male providers.
- Don’t be overly positive or enthusiastic about your treatment. Patients may not want to disappoint providers and may not express concerns about treatment as “doctor knows best.”
- For some patients, the idea of treatment choices and plans may be new to them. They may feel that it is the physician’s role to decide what to do and may find this confusing. Take time to explain the different options and why you would like the patient to give input.
- Ask the patient what they believe caused the cancer and how they would deal with this illness in their culture or home country.
- When explaining something at length, stop regularly to ask patient and family if there are questions. Encourage them to ask questions. Tell them that to ask questions is appropriate and give them time for doing that. Try not to overwhelm the patient. Keep explanations about treatment and administrative issues simple and break down these topics into a number of simple steps.
- For patients with low health literacy, consider meeting with the patient for a number of short appointments as opposed to one or two very long appointments.
- Use the help of an interpreter to assess health literacy of a patient. Ask questions like, “What is your understanding of what we’re talking about? If you had to explain this to a loved one, what would you tell them?”
- Assess reading literacy; consider drawing or showing pictures to help explain concepts provider is talking about; keep explanations simple if possible.
- Don’t use big words or analogies. Spanish is fairly straightforward and translatable. Big words in English become big words in Spanish. The patient may not be familiar with them in either language.
- Avoid technical terms, which are often the same in Spanish. Use drawings to illustrate physiology or procedures.
- Instead of speaking about percentages, use ratios: “If there are 100 people in the room, 15 of them will have success with this treatment.”
- The connection between pap smears and cancer is confusing. Explaining the concept of screening, and the significance of atypia is not readily understood.
- If available, involve patient navigators or caseworker / cultural mediators to help patients navigate the system and to help educate yourself and other staff about cultural and socioeconomic issues.
- Advocate locally and nationally for multicultural campaigns that focus on men’s cancers.
- Keep your senses open for possible domestic violence. In some relationships issues of power can exist if a woman is working and her male partner is not. In some cases this may increase the chance of domestic violence.
- A climate for abuse might develop when a man becomes sick, feels his manhood is weakened because he is unable to take care of his family, and reacts by lashing out to demonstrate his power or control.
- Because Latino culture is family centered, keep the whole family picture in mind when working with the patient. Ask about partner, children, and family.
- Ask about support that the patient is receiving from her partner and family. Because it is traditionally a woman’s job to care for children and the home, it is important to involve and inform spouse and family about what the needs of the patient will be as she undergoes treatment and how they can help and support her.
- If you sense that the partner is not supporting the patient, suggest that the patient bring the partner to the appointment. When a partner comes to the appointment, express gratitude that he/she is participating in the partner’s care and that he/she can take pride in being a “good provider.”
Religion and End-of-Life Care
- Understand that for many Latinos, Christianity is a strong and guiding force in their lives. There is a religious belief in miracles and a reticence to stop life support.
- As of March 2010, Spanish language cancer support groups are not available in the Seattle area. Those Latinos who speak English rarely attend support groups due to economics (transportation, time off from work, struggling to handle basic needs), reliance on family and friends for support, reluctance to share personal issues with strangers, and worries that hearing about the problems of others will bring them down. Some may be resistant to participating in a group that is culturally different from their own, feeling that they would have nothing in common.
- Men may be more likely to go to individual counseling but not groups.
- There are national hotlines for support and information in Spanish (Komen Foundation, American Cancer Society and more). See Resources for Cancer Information and Support for information.
Know the resources for free and reduced-fee screening in your area
- Be able to provide patients with information about programs with free or reduced-fee screening services.
Medications and treatment from home country
- Because many medications, including antibiotics, are obtained easily in pharmacies in the home country (and in fact, even at some Seattle-area bodegas), it is important to ask patients what medicines or treatment they are taking for their symptoms and if they are receiving treatment concurrently from a practitioner here or in the home country.
- There may be a strong spiritual belief in traditional healers, curanderos, or other types oftraditional healers, depending on region. Concurrent use of traditional healers is not usually disclosed to U.S. medical providers. Yerbalistas, or herbalists, may also be enlisted to help the patient.
- Encourage patients to discuss what herbs or other traditional medicines they are using. Ask patients to bring the items in to show provider and pharmacist. Avoid outright criticism, or the perception of condemning the use of traditional medicine.
- Understand that many people will try herbal or home remedies, or will seek help from traditional curanderos, either before seeing a Western doctor about symptoms, or later to first try traditional treatments after hearing a diagnosis of disease.
Resources for Providers
Video Series: The Mind-Boggling Burden of Latino Cancer
A new five-part video series explores the unique burden of cancer among Latinos and how cultural values or beliefs may impact their access to care. The videos are rich, portraying the lives of actual patients, their families and their providers. The videos range between 7 and 11 minutes long and were produced by the Nurse Oncology Education Program (NOEP).
Selected Patient Education Resources in the Spanish Language
MedlinePlus - Spanish
MedlinePlus is the National Institutes of Health’s Web site for patients, and a comprehensive site for Spanish language materials. Produced by the National Library of Medicine (NLM), it contains health check tools and information about diseases, conditions, and wellness issues in Spanish and many other languages (some in multimedia formats). In addition, there is information about prevention, screening, treatment, medications, supplements, the latest research, clinical trials, and links to national organizations.
Lance Armstrong Foundation (LIVESTRONG)
The Lance Armstrong Foundation’s Spanish-language website provides information on the common physical, emotional and day-to-day concerns of Latino cancer survivors.
Hispanic Women - Healthy Choices
A 5-minute YouTube video produced by the American Cancer Society with celebrity Rita Moreno, American Cancer Society physicians, and real-life cancer survivors offering tips to help women make healthy choices and reduce their risk of cancer.
What is Cancer?
Basic explanation about cancer, its causes and warning signs.
This brief written message in Spanish/English, states that it is possible to survive cancer, especially if caught early.
This article was made possible by a grant from Lance Armstrong Foundation (LIVESTRONG), the Lance Armstrong Foundation.
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