We used participants’ descriptions about the services they provide and their experiences working with Latina women (e.g., number of Latino clients) to classify providers’ experiences with Latinos as low (e.g., only see few Latinos), intermediate (e.g., see some Latino clients), and high (a large proportion of their clients are Latinos). Five providers saw a small proportion of at-risk Latinas, three had an intermediate experience, and twelve had a high experience working with Latinos.
3.2. Perceived Barriers to Participate in GCRA
Providers identified barriers for at-risk Latina to participate in GCRA included cost and insurance, referrals, awareness, education, and language, logistic barriers, emotions, spirituality, fatalism, stigma, and systemic barriers (see Table 1
for additional quotes).
Cost and Insurance.
Most providers, especially navigators/social workers, highlighted high costs and lack of insurance as one of the main barriers for Latinas to participate in GCRA. Some were not very familiar with the labs assistance programs or insurance coverage. Of the four navigators/social workers, one worked at a setting where both counseling and testing were available, two worked a setting where only testing was available, and one worked at a setting where neither was available.
“The cost can be prohibitive…I don’t know what percentage insurance covers genetic testing”
Navigators and social workers described loopholes in some State Assistance Programs that had limited coverage (e.g., ovarian cancer cases not covered). They also noted challenges to obtaining authorization from the insurance companies that often resulted in delays. Navigators and social workers further identified challenges for finding insurance coverage for the needed screening and prophylactic surgical procedures following receipt of a positive test for a deleterious mutation.
One provider described how the limited access to testing might lead to suboptimal surgical decisions: “A surgeon may possible recommend to them (Latinas) you might want to think about a bilateral mastectomy just based on your family history and your risk factors, sometimes you don’t need a test… (...) it could really be a workaround but they’re not really getting the testing so we don’t know if we’re doing something that might not be (needed) (...) and it’s not helpful to the family member because there is no test done” (Nurse navigator)
In contrast to patient navigators and social workers, genetic counselors appeared to perceive that cost and insurance were no longer significant barriers. They noted that the cost of testing had decreased dramatically over the last 15 years. They also mentioned the increased coverage by insurance companies, noting the implementation of the Affordable Care Act, the availability of assistance programs in some states, and other available funds from hospitals, foundations, or grants.
Genetic counselors emphasized the importance of informing at-risk women about the existing resources to cover the costs of testing, since women may be unaware.
“The other problem is the payment, people think that the insurance will not cover it and they are convinced that they will have to pay for it when in reality, for most people, insurance will cover it”
However, some providers mentioned greater challenges with covering the cost of genetic counseling for uninsured women than covering costs of testing. To overcome this barrier, some counselors used grant funds to cover the counseling, while others provided free services.
“Most laboratories have testing hardship program[s], so if someone is low income and we can get them free testing setup, that is actually quite easy, but it is kind of ironic that the genetic counseling part can sometimes be a lot harder to get because there aren’t that many free resources for genetic counseling”
Providers described having referral procedures in place at their institutions and also getting some referrals from community-based organizations. However, they also noted gaps and limitations in the referral process. Reasons cited for the suboptimal referral included doctors’ limited knowledge about HBOC risk factors and referral guidelines, primary care doctors’ not assessing or addressing family history of cancer, or patients’ low awareness and knowledge about HBOC and GRCA services. Providers’ limited knowledge about financial assistance programs also resulted in uninsured patients not being referred to GCRA under the assumption that they will not be able to cover the costs.
“The providers may not always guarantee that the testing will be covered. A lot of my patients are told that it’s not going to be covered when it actually is, so they are never referred to start”
Additionally, due to the difficulty of covering counseling, some patients get testing without prior counseling.
“These are all staged breast cancer patients who have already been identified as breast cancer patients and they had been recommended for testing and counseling. Sometimes they get the testing but they won’t get the counseling (because extra cost)”
Awareness, Education, and Language. Providers noted that one of the main barriers is the lack of awareness about genetic counseling and testing services in the Latino community. Limited awareness about the services is also exacerbated by language barriers, the limited availability of informational resources in Spanish, and low familiarity with genetics. “Latina women may think ‘how come am I going to go to the doctor if the doctor will not understand what I say or I will not understand what the doctor says’” (Geneticist)
included transportation, childcare, having appointments during business hours, and the subsequent difficulties getting off work. Providers mentioned strategies to address barriers such as offering telephone counseling, covering transportation costs, or trying to schedule multiple visits to the health care team on the same day.
“A lot of people work full time and have a lot of problems getting to the appointments during business hours, or have jobs where they can’t leave work or they would have to take time off, they can’t afford the day off or they employer won’t let them take the day off”
Emotions. Providers mentioned that HBOC can elicit emotions like fear, worry, and guilt which may hinder GCRA participation. Additionally, for newly diagnosed patients, participating in GCRA can feel overwhelming while they are in active treatment and processing emotionally the cancer diagnosis. “A lot of times it is kind of scary for all of them, especially the patients that aren’t breast cancer patients finding out whether or not you have this gene and then having to worry about children or other family members can be scary” (Navigator)
Spirituality. Providers noted that spirituality and faith is very important in the Latino community, as many believe that their health outcomes are “up to God”. Faith is often brought up as a source of strength. However, in some cases, spirituality may hinder participation in treatment. “I am not going to do the treatment because God is going to decide if I live or don’t live from this” (Psychologist/counselor)
Fatalistic beliefs. Providers also noted that for many women cancer is synonymous to death or that having cancer is inevitable or not under their control. “I have people that come in that are just convinced they are going to get cancer, like yeah, that is just the way it is. Everyone gets cancer; it is not if, it is when” (Genetic counselor)
Providers mentioned that some people are not ready to take action by undergoing testing, some people do not want to know if they are going to have cancer or not, or do not want to hear about management options.
“Some people are not ready in that moment and prefer to wait, especially if they had a negative experience with a relative, so there is people that say I will die of something so I prefer not to know”
Stigma. Providers reported that cancer is often stigmatized in Latino communities, especially in certain subgroups like older generations, women from rural areas, women with lower education, and women recently arrived in the US.
The use of the phrase ‘genetic counseling’ can carry stigma, as it can be misunderstood as psychological counseling and the idea of being ‘crazy’. Providers shared that some of their Latino patients believe that just saying the word cancer increases the chances of developing cancer. Providers reported that often people do not want to share the cancer diagnosis with others for fear of being gossiped about or ostracized.
“I remember one patient in particular from Bolivia and she felt much safer being here and talking about it with people. She said that if she were to bring this up back home that people would be doing a lot of gossiping and that it would be malicious and hurtful and it would be detrimental to her in various ways”
Additionally, providers described that breast and ovarian cancers can be stigmatized since they can pose a threat to femininity. Other sources of stigma included the belief that women got cancer because they did something wrong (and that God is punishing them) and thinking that cancer is contagious.
Providers noted that this stigma often resulted in the lack of family communication about cancer and not sharing the cancer diagnosis, which could decrease awareness about cancer in the family.
A few providers mentioned other potential barriers including fear of discrimination, medical mistrust (especially in relation to the coverage), difficulties navigating the medical system or not being familiar with a medical system that has specialists (rather than a general doctor), competing priorities, and immigration status.
“Sometimes, in a few instances, some people are afraid to fill out paperwork for the free testing because they were undocumented. But I would have said this is fairly rare.”
3.3. Genetic Counselors’ Experiences during Counseling
The genetic counselors and the geneticist identified several aspects that are important to consider when providing counseling to at-risk Latina women including language, education and misconceptions, gathering family history, communication with relatives, testing relatives outside the US, logistics, and engagement in decision-making/respect (see Table 2
for additional quotes).
Language. Given the dearth of Spanish-speaking counselors, language was noted as one of the biggest challenges. The three counselors/geneticist who spoke Spanish (out of 12) highlighted how important it was for Latinas to get counseling in Spanish.
Most monolingual (English) genetic counselors use interpreters who participate by telephone or in person. While counselors valued the availability of interpretation services to provide services to clients with limited English proficiency, they also noted several challenges and shortcomings. For example, using interpreters can hinder building rapport between the counselor and the patient, add time to the length of the session, and, when using telephone interpreters, make it harder for the counselor to get feedback from nonverbal cues.
“(The sessions with interpreters are) about a third longer because you have to repeat everything twice (…) a lot of what we do is try to build rapport with the patient and that’s just an added layer. I have had good sessions with interpreters but it does make it a little more difficult if a patient is more engaged with the interpreter, they [the patients] are looking at the telephone, and it’s hard to make the contact with them. These [are] little things and nuances in a session but overall might really affect the communication.”
Genetic counselors noted that while in-person interpreters might be preferable, it is still challenging to ensure that the right message is delivered. For instance, interpreters appear to summarize and cut off important information and may translate key terms into Spanish words that have different meanings.
In some cases, interpreters might completely mistranslate the information because they become emotionally involved and they do not want to worry patients or because they are unfamiliar with the nuances of genetics: “Some things were more serious than others. For example, a positive test result would occur and the translator would say ‘you have cancer’”. (Genetic counselor)
Education and Misconceptions. A number of genetic counselors shared that many of their Latina patients, especially patients who migrated from rural areas in Latin America or those with low levels of formal education, did not have enough knowledge to understand some of the basic genetic concepts. Moreover, some counselors noted the availability of Spanish-language informational brochures, but emphasized that the language was too technical to be useful to the patients. One counselor suggested that providing too much scientific information might not always be necessary. Instead, she recommended providing a brochure that summarizes the key points and after explaining these points in simple terms, spending more time considering and addressing the patient’s actual worries (e.g., talking about the risk to daughters instead of BRCA1 being a tumor suppressor). The counselor suggested that this approach leaves open the possibility of further describing the scientific nuances based on patient preferences.
Some of the most frequent misconceptions that counselors reported they encountered during sessions revolved around genetic counseling/testing and biological concepts (cancer, genes, and heredity).
: Genetic counselors noted that many people associate genetic counseling with psychological counseling. Other prevalent misconceptions around GCRA included: (1) Genetic testing will provide a diagnosis for cancer, (2) genetic counseling will inevitably lead to genetic testing, (3) a positive result means patients will have to do prophylactic surgery, (4) a negative result means that patients do not have to worry anymore, and (5) the test results can change.
“That’s a question I get a lot. “You know, well, in a few years if you did this test again, could I get back something different?”
Cancer, genes, and heredity concepts:
Counselors identified a big gap in patients’ understanding about the different causes of cancer. They mentioned that some Latina patients believe that they caused the cancer (e.g., stress, bad diet) or that all cancers are hereditary (e.g., everyone has cancer cells waiting to be turned on). Counselors observed a general lack of knowledge that gene alterations can also be passed by and to male relatives.
“One of the major misconceptions is that these breast cancer genes can only come from the mom’s side of the family (…) So that is something that comes as a shock to a lot of people, especially when you’re doing the family history right in front of them (…) and you start to point out things in the dad’s side of the family”
Genetic counselors identified that patients appear to greatly misunderstand patterns of inheritance: “Sometimes people also think (…) “I look just like my mom and she had cancer, and because I act just like her (…), so I must have it too.” (Genetic counselor)
Lastly, providers discussed how different types of cancer such as ovarian, cervical, and uterine cancers are confused or broadly referred to as “female cancers”.
Emotions. Counselors highlighted that emotions are an important aspect of genetic counseling. For instance, counselors noted that some Latino patients feel that genetic information is too much to process and fear the results.
In contrast, other patients feel relieved by the results (even if test is positive) because it puts an end to uncertainty and patients feel that they finally have a starting point to do something about their cancer risk. Counselors mentioned that some women appear to feel guilty because they think that they did something to cause the cancer or that they could have passed a mutation to their children. For example, counselors commented that grandmothers reflect guilt because they might have “passed it to future generations”, mothers show concern for their children and feel guilty, and fathers feel guilt and sadness as they are protective of their daughters. Additionally, counselors reported that young women who may not yet have children may feel shocked when faced with the possibility of removing their ovaries.
Several counselors emphasized the importance of normalizing people’s beliefs about genetic mutations (e.g., many people have mutations), emphasizing that people cannot control which genes they pass, acknowledging and legitimizing patients’ feelings of guilt and reframing receipt of a genetic test result as important information they are providing to their family that can allow them to prevent cancer.
“I want my patients to see that information as a gift they provide to their kids. The perception is ‘Oh, I am causing cancer to my kids.’ I try to change that perception to ‘this is random (…) try to see this as a present to your daughter or son, you are giving them the possibility of being proactive instead of reactive in their healthcare’”.
Genetic counselors indicated that gathering accurate family history can be challenging since Latina women can lose contact with some relatives due to geographic distance or because they were raised by only one side of the family. Thus, it can be hard to know the vital status of some relatives. Additionally, counselors commented that women may not know the cause of their relatives’ death due to the stigma around cancer, which is common in older generations, or the limited access to doctors, particularly in rural areas. Counselors suggested that sometimes relatives ask doctors not to disclose the diagnosis to the person diagnosed with cancer to avoid worrying them. Additionally, providers noted that due to the violence and political conflicts in several Latin American countries, many relatives die young, so it is impossible to know if they would have developed cancer at a later age.
“There is like this hole certainly in the past, you know, this old taboo that people don’t talk about cancer. And so we did not know what happened to grandma, so and so, or grandpa, so and so, or uncle so and so or whoever was, they just got sick and then they died and we really don’t know what happened”
Even when women are aware of a cancer diagnosis in the family, they may not have accurate information about which type of cancer it was since they often confuse cervical, uterine, and ovarian, or just refer to them as “female cancers”. Counselors reported difficulty in obtaining medical records to verify the accuracy of self-report. Although having an incomplete family history is a limitation, fortunately it has become less important due to the ability of doing multiple panel testing and the reduction of testing costs.
Communication with relatives. Counselors indicated that they try to encourage patients to communicate with relatives, including sharing the test results. Some counselors noted that while some parents embrace testing in the family, other families have a hard time encouraging relatives to do the test for several reasons including feeling guilty, having lost contact with some relatives, not even sharing the cancer diagnosis to avoid worrying others or being a burden to the family, or to avoid showing a sign of weakness to the family.
Some counselors voiced their challenges tracking whether women shared the information with relatives, especially when relatives were living outside the US.
“I usually pass it along to my patient and hope that they pass it on to their relative. But yeah, it can be difficult and frustrating because either from just the location or just the relatives not communicating well, it’s hard to get information to the family”
A counselor explained that while writing letters in English and Spanish for relatives was important, it was not always enough if there was no follow-up. Once she had a client diagnosed with breast cancer, who was the sister of one of her clients who had tested positive, yet the newly diagnosed patient was unaware of this information. This case led her to modify her practice to spend more time discussing communication issues and trying to address barriers for testing for the relatives. Another counselor was involved in an intervention that included facilitating communicating results to relatives that participants found extremely useful.
Testing Relatives Outside the US.
Several counselors mentioned the importance of taking into account the implications of testing for relatives who live outside the US. For instance, women could feel unease if they think that the test information may not benefit their relatives who live in Latin America and may not have access to the services.
“Something that is more unique to the Latina population I see, at least compared to other of my patients, a lot of their relatives are not here in the United States. So that brings up questions if I have this information will that benefit my relatives? Will they be able to get tested? Will they be able to get the screening they need or will they be able to get the information they need?”
Although facilitating testing for relatives outside the US was challenging, counselors shared different strategies they use. Strategies included identifying services in other countries (typically limited and not existing in every country), testing relatives when they come to the US, sending testing kits with their clients when they travel, asking the relatives to order the test online, tapping into a research registry with collaborators from Latin America, or posting in the National Society of Genetic Counselors website to find if anyone knows about resources in different countries.
Difficulty reaching out patients by phone was mentioned as a logistic challenge.
“Sometimes it’s just really hard for me to get back in touch with the patient. Sometimes their phone numbers won’t work or they’ll have voicemail and I’ll call with the translator and I’ll call and leave a message but I don’t know if they’ve checked their message, there is just those like logistical things.”
Engagement in Decision-Making/Respect.
Some counselors reported that in general Latinas tend to be less engaged in decision-making and be more compliant with medical recommendations.
“I feel like maybe there are fewer questions. And so sometimes I wonder, “is it something getting lost in translation? Do they not feel comfortable?” It’s hard because you want to make sure that everyone has the information to make an informed decision. But there is very little push back (…)”
One counselor explained that the lower engagement in decision-making might be due to the paternalistic approach in medicine that is common in Latin America. For Latina women, the non-directiveness mandate of genetic counseling can be confusing. One recommendation was to use a more directive approach while always stressing that the ultimate decision is theirs.
“When we ask them ‘would you like to do the test or not?’ the patients are confused and tell me ‘well, you are the health professional, you should decide whether I do the test or not.’ (…). We try to be a little more directive and tell them ‘In my professional opinion I recommend this test (…) but ultimately the decision is yours.’”