Table 2.
Themes and examples of quotes from focus groups of patients and partners.
| Themes | Patients | Partners |
|---|---|---|
| Solicited themes | ||
| Terms used to describe AS | 1) ‘So I said I’ll just wait and see. I took the wait and see process because if it get any worse, I’m gonna know what to do when the time comes’. 2) ‘...she (his physician) initially encouraged me to wait and watch. That was kind of where she, she said, you can wait and watch’. 3) ‘My doctor explained to me about the “watchful waiting,” and he said it was my choice’. |
1) ‘… our best option may just be kinda sit on it for a while and just kind of wait and see what happens, rather than …’. 2) ‘These were his choices and so he’s doing the “watch and wait”.’ 3) ‘I think his doctor called it active surveillance, or “watchful waiting.” We call it “watchful waiting”.’ |
| Influencing factors to pursue AS: Seeing their cancer “small” and “low-grade” |
1) ‘So, basically when I first had this, by it being so small, and that treatment and stuff like that was so invasive. You know he’s, like, quality of life will change. So he just told me to, we’ll do a wait-and-see, and so I did that approach.’ | 1) ‘I said, we are not going to worry about this because the doctor told us this was at the low-grade …’ |
| Trust in their physician | 1) ‘…mine was entirely on the “recommendation of my physician.” Uh, I trusted him.’ 2) ‘I had “confidence in the physician” that I selected. He’s got really good track record … So, uh, I’m going to leave it in his hands for now’. 3) ‘I mean, my “biggest influence” of watch and wait was the urologist’. |
1) ‘A big part of you making that decision is being “able to trust … doctor.”’ 2) ‘Somebody you can “trust,” somebody that you know. Somebody that knows your medical history’. |
| Concerns about PSA testing and prostate biopsies | 1) ‘…one study read says that PSA’s valid. The other says, eh, it’s not so good. And if it’s not good, then develop a test that is’. 2) ‘My “fear” is that it (cancer) would get away. You’d miss your window of opportunity’. 3) ‘They gotta “do something for pain” (associated with biopsies)’. |
1) ‘He (husband) rides bikes and so now when he know he’s going to have blood work, he makes sure to tell the doctor don’t do it in September. Do it in October. That’s a whole month off the bike because that can change the PSA’. |
| When to End AS | 1) ‘Yeah as long as my markers don’t change, uh, I’ll keep listening to the advice of my urologist’. 2) ‘As long as things remain the same or increase slowly, uh, I intend to go active, uh, surveillance as long as I can’. |
1) ‘I think he would stay on it (AS) so long as it’s contained. So long as the doctor is confident that it’s not spreading or going you know, growing at a rate where some other treatment would be appropriate’. 2) ‘So had he had the symptoms, it could have changed his decision’. |
| Unsolicited themes: | ||
| Medical mistrust from black men’s FG only | 1) ‘I feel like because I was a black man that they were willing to use me as a guinea pig and if they could make some money, if I was stupid enough to say okay, I’m real scared’. 2) ‘…, and I went back and queried my friends who had gone to Dr. A and who had had the procedure at Hospital B. I got horror stories from them’. |
N/A |
| Men’s denial from partner’s FG only | N/A | 1) ‘He had all the symptoms (of prostate) and he was in so denial about it, ...’. 2) ‘(Talking about their men’s denial) If they just ignore it, it’ll go away, you know that?’ Another women-they believe that’. |
| Sharing cancer diagnosis and justifying decision to others | 1) ‘… you really have to make sure that everybody in your family and your circle is in agreement…’. | 1) ‘I told him, I don’t think we should tell, you know, any family until we have any answers, because it’s not going to do anything but raise us to a point of panic if they ask us questions we don’t have answers to’. |