Table 2.

Quantitative Questionnaire Items, Mean Scores, and Related Sample Qualitative Quotes by Anticipated and Experienced Stigma

Quantitative itema	Mean (SD)b	Illustrative quote
Anticipated stigma
Health care workers will not listen to my concerns.	1.83 (1.06)	“[A] lady that worked [at the clinic] had leaked my [HIV] status out. So that had me really apprehensive until I just started going back to the doctor. The [new] doctor is very kind, concerned…” (black participant, MS site)
Health care workers will avoid touching me.	1.81 (1.04)	Recount of a scenario where the participant's expectation differed from reality: “I got into a car accident. I went over to the emergency room and I was ashamed to be there…. I was afraid. How are these people going to treat me? I was on guard. I even had a nurse, he went to go take blood from me and didn't have his gloves on. I [said] ‘oh, wait, I'm HIV positive…’” (black participant, AL site)
Health care workers will treat me with less respect.	1.86 (1.10)	“I've put [my HIV status] on different applications … like when I had to do a mammogram….. But my sense of thinking sometimes, ‘What's she thinking?’ You know … ‘How's she going to treat me now?’ Because your attitude is all the sudden I got stink, you know. Yeah, been there.” (black participant, GA site)
Experienced stigma
Health care workers have not listened to my concerns.	1.40 (0.95)	“…maybe seven or eight years into my diagnosis, I had a doctor tell me that scientists say right now that you need to start taking meds. I said well, scientists say one thing, but I'm saying that I'm not ready because I always was told that, when you start the meds, you've got to be faithful and it's nothing to play with. Me and him had some words. He told me that, since you're not going to take the meds, I'm not going to treat you. I said no problem… and I left out of his clinic.” (black participant, AL site)
Health care workers have avoided touching me.	1.26 (0.73)	“I think I had like a bacterial infection or something else going on down there. So I made an appointment and I went and saw the doctor. I disclosed my status on the paperwork. The [doctor] wouldn't touch me. She was like she kind of looked at me from this distance and was like yeah, you have a yeast infection …. I liked flipped my wig. I was like ‘I know this is not what is wrong with me.” (multiracial participant, CA site)
Health care workers have treated me with less respect.	1.34 (0.87)	Characterization of visits to HIV care provider: “In three words cold and calculated …. the majority of them act like they don't even want to come near you …. It's sad because that's what they're in their profession for…. but some of them they just act like they standoffish …. It just ticks me off as brilliant as they are, they can be that ignorant …. not every time, just certain doctors…. 75% [of doctors].” (white participant, MS site)

^aItems measuring anticipated stigma were prefaced by the question, “For the following, please tell me how likely it is that people will treat you in the following ways, in the future, because of your HIV status?”; Items measuring experienced stigma included the question, “How often have people treated you this way in the past 12 months because of your HIV status?”

^bSD, standard deviation; range for anticipated stigma: 1 (Very Unlikely) −5 (Very Likely); range for enacted stigma: 1 (Never) −5 (Very Often).