Participants represented a diverse range of ages and were evenly divided between men and women (Table ). Reflecting the demographics of the communities these EDs serve, half of the participants in this study were African-American. While we purposively sampled to obtain an equal number of accepters and decliners of HIV testing, it was more difficult to recruit decliners at Site 1, which used clinician-initiated testing, than at sites 2 and 3, where testing was offered at a central location (e.g. registration, triage). It is not clear whether this was because fewer patients declined clinician-initiated testing or because ED clinicians were simply too busy to refer decliners to the study. Thus, the research team stopped recruitment at site 1 once the quota of accepters and decliners was reached at the other sites (Table ). About half of participants had insurance and a regular source of medical care. The majority of patients (44/50, 88%) had previously tested for HIV infection, including 18 (82%) of the 22 decliners sampled. Of the 6 participants who had never tested for HIV infection, 2 decided to accept testing in the ED that day.
Respondent Characteristics (n = 50)
Acceptance and Refusal by Site
Reasons for Acceptance
The most common reasons for accepting HIV testing in the ED were because participants "just wanted to know" and that it was "good to know" one's HIV status (Table ). Participants viewed the test as a form of assurance of negative status. Some participants saw HIV testing as a way to "check" their bodies and ensure good health.
Reasons for Acceptance or Refusal of HIV Testing in the ED
Well, I'm in here getting tested. I'm getting my liver tested, my kidneys tested. I had an ultrasound on the veins in my leg, so why not get an HIV test. They already have the blood, so why not?
-51-year-old African-American man
One participant described how an HIV test in a medical setting could help her health:
The hospital ask you anything about your health that they damn well want to. If it's helping, ask me.
-42-year-old African-American woman
Participants emphasized HIV testing in the ED as an opportunity they might not have otherwise encountered or sought out, and they perceived their acceptance of testing as taking advantage of that opportunity. Convenience and the fact that tests were free were also cited as reasons to accept testing.
Because I'd never had one and it was free... I would have not sought out at test just on my own. I wouldn't have made a doctor's appointment. So it was a good thing that the hospital offered it. I went, "Well, why not?" But I wouldn't have thought to go, 'cause it wasn't a concern in my mind, whether that's right or wrong smart or ignorant. I think it's a good thing because everybody should know and it's one less thing you have to worry about.
-52-year-old White woman
One participant who had never taken an HIV test liked having the test as part of her medical care in the ED. She acknowledged that stigma played a role in her decision to test in the ED as opposed to a dedicated testing center.
Actually - to be honest - I think that I would never have taken a test if it wasn't offered at this hospital. Because for me to go to a clinic that does HIV testing - it would make me really uncomfortable. Because just the idea of having it stated boldly and well known as an HIV testing center - for me to show my face in an area like that - I would feel a little uncomfortable and just in case I might see someone I know I would feel as if "Well, this person might think I have something and they might go around spreading rumors and say, 'Hey I saw her at the HIV testing center. She might have something.'" So it would make me uncomfortable but I actually took a test here because it was very convenient. I was like, "Wait a minute - maybe I do want to know." And I guess it is a little more discreet so I kind of like that better than having to go to a clinic that everyone knows is testing for HIV.
-25-year-old Asian woman
Similarly, another participant appreciated the absence of a traditional counseling approach.
I had no intention of getting an HIV test when I came in here so it was just added on to what my purpose was being here. I felt pretty confident I didn't have HIV. I felt pretty confident the first time around too but the first time around (testing) was done with a lot more intention on my part and there was counseling involved, so it was a much more elaborate experience that this was. I didn't express any interest in counseling. I think had they gone that route I probably wouldn't have wanted to take it because I'm not here for that so it was sort of like, "Oh well, while you're here..." And the fact that they presented it as "while you're here, by the way..." I actually thought was pretty good. Because it made me feel comfortable. It wasn't like, "Oh, my God, you have to make sure everybody who comes through here doesn't have AIDS." Their casual attitude for me was fine. It worked out very well.
-55-year-old White woman
Finally, other reasons for acceptance were that some participants felt they had engaged in behavior that put them at risk for acquiring HIV infection, they had partners who encouraged them to test, and they wanted to ensure the safety of others as they entered new relationships.
Reasons for Refusal
Many participants declined HIV testing because they had tested recently, often in the same ED testing program (Table ). In addition, individuals did not perceive themselves to be at risk for HIV infection, usually because they were in long-term monogamous relationships and had been tested prior to or during these relationships.
I took one during my last pregnancy; I just have a 4-month-old at home so I'm monogamous and I didn't see any need to waste the tester.
-30-year-old mixed-race woman
Other individuals who did not perceive themselves at risk for HIV infection stated that they had been abstinent or used protection consistently since their last HIV test.
Cause I don't got it. I tested and I had a blood test and a swab test and it was in '06 and this is '09. But since I was safe, I was in custody when they did it, tested it and since I've been home I've been using straight condoms and I don't kiss nobody with sores in their mouths, stuff like that.
-38-year-old African-American man
In addition, a few participants alluded to wanting to focus on the medical issue that brought them to the ED, even though they may have tested for HIV in the past.
'Cause I just came here for my toe. I didn't want to do nothing else.
-27-year-old Hispanic woman
While nearly all participants had favorable views on testing for HIV infection in the ED, there was case where a participant expressed a desire for a more nuanced conversation within the bounds of an established patient-provider relationship. She described her rationale for declining the test as follows:
One, it's because this is the county hospital. The approach of the person who asked me was a little raunchy, like, "Hey, you want to take an HIV?" No information or nothing like that. I feel like I have the right to know. I think I know my status and I pray it hasn't changed since I've known it and I would just feel more comfortable at my regular physician, you know what mean, far as if there was something I needed to consult them about or something of that nature; just the confinements of the relationship that I've already established with my current provider. I would just feel more comfortable and for them having a record or whatever.
-25-year-old African-American woman
Of the four participants who declined HIV testing and had never previously tested for HIV infection, two participants stated that they felt at low risk for HIV infection because of being in long-term monogamous relationships. Another participant stated, "I don't know, actually. I just don't want to take one. I guess I don't want to know anything." While this participant did not feel that HIV testing was necessary for him at the moment because he had not had sex in eighteen months, he did go on to endorse HIV testing as important in general. Another patient gave a layered response, explaining that she perceived herself at low risk because of being in a monogamous relationship, but she also voiced concerns about the potential disruption of trust in that relationship and the confidentiality of test results if she was found to be HIV-infected. She also expressed not wanting to know her HIV status.
Um, because I have been with the same guy for more than 20 years and I'm not having any outside sex so I just - there's really no privacy once you get that information out there... I don't care to know one way or the other... I think my risk is low, I mean I'm trusting him not to be having any outside sex and I know that I'm not and like I said we've been in a monogamous relationship for more than twenty years now so I don't think that I'm at risk, no... Should I start a medical record somewhere I don't want that I was even tested because really supposed confidentiality is not reality. Everything's on computer. I just don't want that information out there. Um, well I would have to be tested so there my confidentiality is violated cause if it's positive that's everybody. Public health, the lab, everybody would know. And I don't want to know. Like I said - well I guess that would ruin whatever trust, cause I'd know where I got it from if I got it. Like I said I haven't had sex with anybody but him so I just prefer not to know.
-50-year-old African-American woman
Overall, many of the decliners had personal experiences with HIV, including family members and friends who died of AIDS. Decliners were more likely to discuss HIV stigma compared to the accepters, including descriptions of "layered" stigma around homosexuality and intravenous drug use [19
]. One participant who declined HIV testing and had never tested for HIV infection described a family's response to a cousin who died of AIDS.
And I remember one year Christmas dinner, Thanksgiving dinner, we used to get together to have a kind of potluck thing at different people's houses - my grandmother or one of my aunts. And he wanted to come to dinner. That was fine, but he wanted to bring his partner and like hell no. No, you can't bring him. They fixed him a plate and told him to take it with him. Don't worry about bringing it back.
-50-year-old African-American woman
It is worth noting that no participant invoked test type (oral swab vs. venipuncture) as a reason for declining the test.
The Experience of Testing for HIV in the ED
All participants described being given the opportunity to decline HIV testing in the ED, and nearly all participants were satisfied with the offer of HIV testing. As most of the people who accepted testing had tested for HIV infection previously, they acknowledged having familiarity with HIV testing. Only one person expressed a desire for more counseling.
It's kind of like a rush here, so they don't really sit down and really talk to you about that test and they just want to test you for when you do come back and you already been on record as negative or positive or whatever... I wish they could talk to me about the test and everything like that but they don't because they be so backed up to the point where they can't talk to you and they just be like, "Okay, well here go the test. Your doctor's going to tell you the results." But it would be nice you know if they would give a little background and tell them how the test is and how you can just get it far as even having sex transmitted, just being sexual with your partner or you can get it from kissing or whatever like somebody bleed or somebody get cut and you try to help them clean up and they might be having it and your blood touch their blood and damn you got it.
-19-year-old African-American woman
In contrast to most participants, this respondent felt she was at high risk for HIV infection because in the past she had an HIV-infected partner. She wanted the opportunity to speak with someone about her situation and also wanted more information on risks of HIV transmission. Her story was the exception in this dataset, but it demonstrates that those at increased risk of HIV infection may continue to benefit from counseling at the time of testing.