Table 3 Themes and sample quotes

Low levels of knowledge & awareness; confusion

o “I think that we, as Hispanic women, sometimes have little knowledge. That’s why we are the most exposed to cancer, to die from it. So many people lack the right information.” (Latina)

o “The guidelines have changed without us even knowin’, evidently. Because we don’t know about it.” (African American)

o “I’m very confused by that because of, you know, I think it was about a year ago …they kind of changed what they were saying…” (Caucasian)

o “If my doctors tell me that I still need it every year, is my insurance then telling me I’m not?… it just added confusion, that STILL isn’t resolved.” (Caucasian)

Belief that screening more often & at younger ages is best

o “I don’t understand why do we get our first mammogram after 40, if nowadays there is so much cancer among younger people.” (Latina)

o “There are so many cases of women (with cancer). I don’t even know why we are discussing (raising age of first mammogram). It is not logical to me.” (Latina)

o “Since there is cancer in people who are so much younger, starting at 50 or asking the doctor at 40 doesn’t make sense.” (Latina)

o “In our ethnic group, we already have women diagnosed with breast cancer in their 20s. Why not start early.” (Latina)

o “[Yearly mammogram have] been drilled in our head for years and years and years and then, all of a sudden you’re just changing it, just like that.” (Caucasian)

Mistrust regarding rationale for change

o “I really think that that comes from the insurance companies… (who will not) want to pay for an exam every year.” (Latina)

o “Insurance companies tells doctors what to do.” (African American)

o “This is something someone told me long ago; the notion that (current screening guidelines are) not cost-effective…I am sorry. Life is more important than ‘cost-effective.’” (Latina)

o “… the sense I got was, ‘Okay, they’re belittling us, that we can’t handle it… you know, the false/positives.’ Then my interpretation was, ‘Well, it’s cost-cutting’ … what I was hearing… didn’t [make] sense.” (Caucasian)

o “They’re trying to save a dollar.” (Caucasian)

Excluded from decision-making & policy process

o “Who asked me?…Did they ask women how they would feel if it was changed to 50? Or did they change it first and now they are asking me after the fact?” (Latina)

o “Is… the government trying to dictate when a woman needs a screening test?” (Latina)

o “I don’t accept [the change] it because I feel that it should have been…told to everybody …there’s a lot of people in here and only one person heard about it, the word has to get out… women need to know what’s goin’ on!” (African American)

o “It was just, ‘Here’s the change, now do it this way.’ Without any explanation.” (Caucasian)

o “It was like, ‘Well, they’re not gonna know better,’ type of thing. They’re just women. It was just men, deciding FOR us. I felt very diminished, the way they were talking about me [about] women in general.” (Caucasian)

Factors that influence decisions to undergo breast cancer screening

Not a decision

o “I would still want my mammogram done, no matter what. I’m forty-seven and I’ve had problems in the past…I would still like to be on the safe side.” (African American)

o “(If my doctor told me not to have a mammogram) I would think somethin’ is wrong with her. Why is she tellin’ me NOT to have it done? Shouldn’t it be my choice?” (African American)

o “(If the doctor told you not to have a mammogram), I would just say, ‘I don’t feel comfortable, and I just feel like I need to have one.’” (African American)

o “I would tell the doctor that if he is not willing to refer me to do the (mammogram) that I’ll go somewhere else. Because I’m worried…” (Latina)

“Following doctor’s orders”

o “The doctor decides whether or not you get a mammogram.” (Latina)

o “In my case, I didn’t have to (schedule my mammogram) myself, because they, my doctors, take care of it and refer me to the appointment every year…But if they didn’t do it, I would.” (Latina)

o “I got my mammogram three times and the last two times, they told me I had a cyst on one of my breasts. So, I asked them, ‘what are you going to do to remove it? Am I going to get surgery?’…(The doctor) told me…only if I wanted to. And I think that’s wrong. They have to do what needs to be done…Not leave it up to me.” (Latina)

o “Well, you know what I noticed? A lot of women in our community, right here, are not educated enough to know that they can (decide to have a mammogram on their own)…they just go by what their doctor says.” (African American)

Need to advocate for oneself

o “A lot of women in our community, right here, are not educated enough to know that they can (decide to have a mammogram on their own)…they just go by what their doctor says.” (African American)

o “I wouldn’t follow the guidelines. (I’d still get a mammogram) once a year.” (African American)

o “Do your research, ask your questions, it’s you and you only have one body, one life.” (African American)

o “I think women stood up and said, ‘No, you’re not gonna change. This is our health.’” (Caucasian)

Preferred sources & channels for information delivery

Doctors are preferred information source but many have poor patient/provider communication

o “I told (the doctor) I was still concerned about a spot (on my breast). But the doctor made a dismissing (sic) gesture and said, ‘You don’t need an ultrasound. You just need a mammogram. You are fine. I don’t see any spot,’ as if it were unimportant.” (Latina)

o "Don“t sit back and think that the doctor’s gonna go through all this and that because, you know, the doctor’s mind might be somewhere else…” (African American)

o “What do I think doctors will do? Some doctors will be COMPLETELY disrespectful of their patient’s thoughts in this situation and say, ‘You don’t know anything. What do YOU know?’” (African American)

o “I would be interested in potentially making that decision or talking to my doctor.” (Caucasian)

More information & explanation needed; help women make informed decisions & advocate for their preferences

o “If my doctor told me not to have a mammogram, I would think somethin’ is wrong with her. Why is she tellin’ me NOT to have it done? Shouldn’t it be my choice?” (African American)

o “The thing that bothers me about this, it says, ‘women who are less than 50 have to decide if they want.’ Okay. So, first of all, HOW they decide is really important; who helps them decide -- I’m worried about that.” (African American)

o “The medical professionals need to be more proactive in helping women understand… especially in the Black community. All of those screenings should be discussed, but they’re not....” (African American)

o “I’m thinking, ‘Gee, what ARE the cons?’ … But, that discussion didn’t happen. They always ask, ‘Do you have questions?’ But I didn’t get the idea that it was up for discussion. It was kind of like, ‘I’m gonna write you a referral for your mammogram.’” (Caucasian)

o “You NEED that information from people that you trust so that you can make a decision.” (Caucasian)