Table 2.

Experiences during Counseling.

Family History

“I’ve seen mainly women from El Salvador (…) someone had cancer and they didn’t know what type. Or it would be vague like, “they had cancer in their womb” but does that mean they had uterine cancer? Was that cervical cancer-was that ovarian cancer? It’s hard to know.” (Genetic counselor) “I’d say they know a little less about the family history. And they will communicate why. They’d say you know “with my family members it’s about culture: we don’t talk about illness,” or “when people died in my country, they just died. No one really talked about it much” or “a lot of people didn’t go to the doctor.” So on our family trees we have a lot of question marks regarding what could be the causes of death for people. Or occasionally it’s just cancer and we don’t have more specifics, which makes it hard to give a patient an accurate risk assessment.” (Genetic counselor)

Communication with Relatives

“That has been my biggest challenge. I have a few families where they have relatives coming afterward to be tested by me. So I don’t know how many of them are getting tested or who they end up communicating their test results to.” (Genetic counselor) “They don’t want to worry their family, so they haven’t told their families, their moms who live in a different country or they haven’t told their children or whatever it is. And I think that creates a lot a huge burden to keep that to yourself” (Genetic counselor)

Testing Relatives Outside the US

“I think that’s another thing that comes up a lot. They tell me, “that’s great that you tell me this information and that they need to do this testing or screening, but they don’t have access to it (…) so is it fair for me to do this testing and be like ‘good luck everyone else’?” (Genetic counselor) “So, we have a research registry with collaborating sites in Mexico and in Colombia and in Brazil (…) And sometimes those options are still very limited, especially when they live on the other side of the country. And so, it might not be feasible and then the other challenge, of course, is that if they test positive, they would not have access to those services that they will need.” (Genetic counselor)

Language

“Working through a translator is very difficult; the translation information isn’t really detailed and nuanced. So, it’s really a challenge for me to break down the information as much as I can to make sure that the patient is getting a good understanding of what we’re doing and why we’re doing it and that they’re able to make the same type of choice as someone who is an English speaker.” (Genetic counselor). “You take someone that doesn’t really have much health literacy or much anatomy, they are drawn into this world where people are throwing words at them (…) if it is in a language not even in your native language. And then you are trying to make decisions about these things when you can’t even grasp the most basic and what you even have. I imagine it is overwhelming.” (Genetic counselor)

Emotions

“Guilt, um blame, like you said if it’s they don’t have a good relationship with someone like their mother and then it turned out that it is maternally transmitted they blaming people who you don’t have a good relationship for this we’ve seen joy when you test negative which is almost I don’t wanna to say a full sense of security but having to kind of bring them down (…)” (Genetic counselor) “The parent is like ‘I didn’t even know that I had this (deleterious mutation). I’ve given it to my child and here my child is suffering because of something that I wasn’t even aware of.’ That’s where I see guilt the most I think. And then also too with young women who have been recently diagnosed and also have small children. It’s like, ‘not only am I sick,’ but there is this added pressure to like ‘taking care of my children but also now my children are at risk. I may not be there for them when they go through this too.” (Genetic counselor)

Education and Misconceptions

“Because one of them is the belief that all of us have cancer inside of us and it’s just waiting to be turned on and so this belief that everybody has cancer cells and those cancer cells are waiting to be activated (…) (Genetic counselor) “Gynecologic cancers can often be misreported, so while they say it’s ovarian, it was really uterus or cervical cancer (…) within Latinas and Spanish specifically (…) that is a common misunderstanding overall because some of the words they use interchangeably to describe female cancers.” (Genetic counselor)

Engagement in Decision-Making (Respect)

“When someone has a BRCA1 mutation, I would want them to have their ovaries removed too, but I want them to want to have their ovaries removed, to really understand why. And I think that their idea of what they look at as elective surgery is a hard thing to consider.” (Genetic counselor) “I like women to be engaged in discussing that and choosing what’s best for them, and what feels most comfortable. And I feel like maybe with the Latina women I see, it’s whatever I recommend” (Genetic counselor)