Table 1.
Facilitators | Family |
---|---|
“I think that time and time again if you are thinking about Latina women specifically, their family has to be a big motivator. Common questions are: what is up with my daughter?” (Genetic counselor) “When they are doing the testing they are looking at a different perspective of being able to provide that new information for their family, so that the legacy of cancer does not continue in their family” (Genetic counselor) |
|
Inform Treatment/Prevention Decisions | |
“Specifically women with ovarian cancer, it could help if they have a BRCA mutation, it could help with treatment options because there is a specific chemotherapy drug called “lemprasa”.” (Genetic counselor) “We know what caused the cancer, we can test another family member so that we can test: are they actually at risk for the same thing? And if they are, we are going to start taking care of them differently.” (Genetic counselor) |
|
Doctors’ Recommendations | |
“Culturally, they tend to follow what the doctor is recommending” (Navigator) “What the doctors are telling them is what they should do. And they want to do everything that they can and they can make sure that they are very grateful (…) following up on whatever is recommended by them” (Genetic counselor) |
|
Barriers | Cost and Insurance |
“I think the biggest barrier is getting them to take the test when they don’t have financial resources” (Navigator) “Finances are probably, potentially a barrier or a perceived barrier… Usually, nine times out of ten, we can find some way (to cover the test), whether it is going to a laboratory or coding it in the right way. We are at a level where people don’t have to pay anything for something that they can’t afford… In my experience, finances are becoming less of a barrier” (Genetic counselor) |
|
Referrals | |
“Sometimes we have had some insured patients that have gone through counseling. But without insurance? It is out of the question. There is no mention of it… If there is a patient without insurance we can’t even give them the opportunity to talk about it, to explain about it” (Navigator) “We see very few Latinas referred to genetic counseling. I think they don’t know that they need to do it, maybe their doctors do not refer them or they don’t discuss about relatives with cancer. It is important to explain that if they have cancer in the family, they should talk with their doctor” (Geneticist) |
|
Awareness, Education, and Language | |
“I think the bigger part of the barrier is that educational materials are not available in Spanish” (Navigator/social worker) “Lack of knowledge that these services exist, there is not a lot of promotion” (Navigator) |
|
Logistic Barriers | |
“They don’t want to spend a ton of time going through things.” (Genetic counselor) “We have found that having people travel, even if we pay for travel, was a big barrier to service.” (Genetic counselor) |
|
Emotions | |
“Removing that sense of fault. I see a lot of women who say “I cannot tell my family that this is going on” (…) “I can’t put this on them” like it is a burden they are putting on them” (Genetic counselor) “A lot of fear, fear of the results, of what the results will be, what will happen, so they don’t want to know if they are going to get cancer or not (…) fear of the costs” (MD, geneticist) |
|
Spirituality | |
“I hear a lot of patients say you know it’s not the doctor, the doctors they can say what they want to say but it’s not them who have the last words, it’s God who has the last word with this.” (Psychology/counselor) | |
Fatalistic Beliefs | |
“I am not in control of the situation, so me doing a test is not going to make a difference” (Genetic counselor) “Whatever is going to happen, whatever God has in mind for me is what is going to happen. So, this idea that the information won’t necessarily change an outcome” (Genetic counselor) |
|
Stigma | |
“I think there is stigma associated with it, especially back in those days, and especially in rural areas” (Navigator) “There was limited understanding about the causes of cancer (…) any disease that was considered contagious or that diminished the abilities in a family brought shame to the family ‘my family is unhealthy’” (Genetic counselor) |
|
Systemic Barriers | |
“It is not only the obligations as a caretaker but also as the person who supports economically the family” (Psychologist). |