Table 3 Barriers identified from thematic analysis of focus group transcripts

LACK OF KNOWLEDGE ABOUT HPV/ANAL CANCER

Lack of Knowledge of HPV/Anal Cancer

Expressing a lack of knowledge about anal cancer, anal HPV, anal screening, warts, or HPV vaccination.

“Part of it is not feeling confident that the provider really is able to give me substantial information about my health and sort of, so I feel like have a lot of confusion, have interest about anal cancer and HPV, but I feel like I haven’t really had clear sources of what tests can be done and what information can be gotten from those tests.” –FGD 1, Participant 3

10

8

6

11

4

39

RESEARCH FOCUSES ON ANAL CANCER

Physical Anal Discomfort

Associating the anal exam with physical discomfort.

“Throughout my life I’ve known a lot of gay men that don’t even like their butt touched so. I mean I don’t think it … would be easier [for a gay man]. You’d think, of course, I … think, you know, that [it] would be easier for a gay men because that is the kind [of] activity [they] have, but I know a lot of gay men who don’t like their butt touched, so I know they wouldn’t have this test done.” –FGD 2, Participant 2

6

5

2

3

3

19

Discomfort Talking About “Anal” or an Anal Exam

Feeling discomfort regarding the discussion of the anus or the anal exam.

“Well, one thing I am just sort of comparing it to in mind is the way people talk about colonoscopies, and part of it was just the preparation for it, but there are some people who say, oh yeah, it wasn’t really that big a deal. What’s all the fuss about? But a lot of people, they sort of love to dread it. And it is funny because we’re talking about how people don’t like to talk about anal stuff, but people love to talk about colonoscopies, but it’s always about how awful it is, so I don’t hear people talking about anal pap smears that way.” –FGD 1, Participant 1

11

3

2

2

2

20

Anus as a Center for Pleasure

Not wanting to associate anus with cancer or disease.

“That’s the thing about this, you know it is talking about disease around the part of your body that you derive pleasure from, and I guess maybe that’s somewhat difficult too when talking about this, you know, first of all talking to myself, talking to friends about anal pleasure and that, and then having a provider/clinician that will listen to me and be okay with that and then talk about the disease layered on top of that as well, this gives me pleasure, but now I have to deal with the fact that this disease could be there…” –FGD 1, Participant 1

3

0

0

0

0

3

Location Barrier

Not wanting to think about HPV, anal cancer, or disease at places like bars or while on vacation.

“If I was at the bar, I don’t want to think about all the consequences, my focus isn’t in on health, and then there is other times [like] when I am in my doctor’s office, and I’m thinking a lot about health and things I want to do, to stay healthy, so I think the bar, you will get the message out [to] people so from a familiarity standpoint you will get it, but from a call to action, I think it’s a mental shift the people aren’t going to make a lot to like ‘oh, well now I will go sign up and do this on my phone.’ It is something like who wants to sign up for STD education when you are in a bar, it is like, I don’t want to think about that, I am hoping to meet [someone].” –FGD 3, Participant 3

1

0

5

2

3

11

Female Provider

Not wanting a female medical provider to perform the anal exam.

“Yeah, I am not going to discuss my butt with a woman, you know. It is just how I am.” –FGD 3, Participant 2

0

3

1

0

0

4

STIGMA-RELATED BARRIERS

Age Stigma

Expressing judgement in relation to older individuals.

“The problem is that our culture is just so messed up about aging.” –FGD 1, Participant 4

3

3

5

0

3

14

Anal STD Stigma

Noting judgment in relation to anal STDs/STIs, including HPV.

“Yeah, and I think for our generation, at least, I know through my life, sort of, anal STDs have more shame than say other STDs.” –FGD 1, Participant 1

1

3

2

1

0

7

Stigma Against Being Receptive/Bottom Partner

Expressing a negative association regarding being the receptive sexual partner.

“Like there used to be an assumption that only bottoms get HIV. We have those biases and prejudices, they are not rational, and they are not true, but I think there is still some bottom shaming in our culture.” –FGD 1, Participant 3

2

1

0

0

1

4

General Cancer Stigma

Expressing negative thoughts regarding having, getting screened for, or being at risk for any type of cancer, other than anal cancer.

“… But now I have to deal with the fact that this disease could be there, and it is similar to HIV but, you know, it’s very… it’s different enough because then the cancer thing is that the ‘C word’ is used. So that’s just a facet of this that I find maybe prohibitive, and it prohibits discussion and awareness and that sort of thing.” –FGD 1, Participant 3

2

1

0

1

0

4

Anal Cancer Stigma

Expressing negative thoughts regarding having, getting screened for, or being at risk for anal cancer.

“With the colonoscopy, they go deeper throughout the whole and entire canal whereas the study just focuses on the first few inches … but still, when you attach anything to the word ‘Cancer’ it is stressful and it is scary and it turns people inverted, some people don’t like to tell their families or their friends because … they get treated differently or something like that, so I think private, I mean you want to put the word out there, but you also want to say it is something that a lot of people maybe want to keep private.” –FGD 3, Participant 4

1

0

1

1

0

3

HIV Stigma

Expressing judgment related to having HIV/AIDs.

“… He passed away with HIV and he was the one that was a world traveler, he was all over the place so it stunning to me he was such a world traveler and … he died in a time after the medication was [already available] that could have saved his life. So what happened? And I kept hearing he never got tested [for HIV].” –FGD 5, Participant 5

1

2

0

0

8

11

Stigma Against Being Gay/Bisexual/MSM

Expressing a negative association regarding men who have sex with men.

“How many people, do you think are radically in the closet about this stuff … I mean men that have sex with men, they are really underground about it.” –FGD 5, Participant 5

0

0

1

5

5

11

CONFIDENTIALITY CONCERNS

Confidentiality

Concern over the sharing of personal and/or medical information.

“I mean I am familiar with HIV studies and also thinking back to the 80s when anonymity and confidentiality were—you know people were afraid of their providers having records that in some situations, sort of … the idea of preexisting conditions or the ability to sort of be stone-walled out of health coverage is certainly an experience within our memorable history that did not trust that sort of integration.” –FGD 1, Participant 1

9

1

6

2

8

26

GENERAL BARRIERS NOT SPECIFIC TO ANAL CANCER

Insurance Coverage

Concern over coverage of visit costs.

“It might be easier to get people if they didn’t have to pay or figure that if for some reason their insurance declines it, then they’re on the hook for it.” –FGD 4, Participant 3

6

6

4

5

1

22

Money as a Barrier

Money concerns related to joining the study, including cost or compensation.

“To me it would be a problem, I mean because I only have my social security return in income so anything that will mean that I have to pay, something, $70 is a lot of money, couple of thousands is just like you might as well kill me.” –FGD 5, Participant 2

2

5

1

3

1

12

Time Barrier

Expressing lack of time to be in the study.

“I was also thinking our lives are busy, but for some people as they get older, they may also have more medical appointments already, so taking on a regimen of many medical appointments could seem—for some people—not wanting to, like, why do I want to go to the doctor’s office more than I already do?” –FGD 1, Participant 1

4

1

1

0

0

6

Study Fatigue

Feeling that there are too many research studies or too many flyers being handed out.

“There is a certain flyer fatigue in our generation.” –FGD 1, Participant 1

3

0

0

0

1

4