Among the 24 participants who provided informed consent, 22 who returned at least one self-sampling device for DBS, and each of these participants also completed an in-depth qualitative interview. We were unable to conduct qualitative interviews with the two participants who did not return any devices for self-sampling of DBS. Thus, the analytic sample for this qualitative investigation included the 22 participants who returned at least one self-sampling device for DBS.
As shown in Table I, the median age was 47 (IQR = 37–55) with a range of 29–70 years old. Regarding race and ethnicity, 10 were non-Hispanic White, 7 were Hispanic/Latino, 4 were Black/African American, and one was Asian/Pacific Islander. Thirteen participants reported only methamphetamine use, three reported only cocaine use, and six reported methamphetamine and cocaine co-use. ASSIST scores for individuals reporting cocaine use were in the low (n = 15) and moderate use (n = 7) categories; and those reporting methamphetamine use were in low (n = 3), moderate (n = 11) and severe (n = 8) use categories.
Theme 1. Self-collection is feasible and acceptable. Participants indicated that the idea of self-collection was convenient and easy to do, and that providing kits with the necessary tools (e.g., lancets, cotton pads, and pre-paid packaging) improved feasibility. They also mentioned that not having to travel to a doctor's office also contributed to the acceptability of self-collection.
I like that idea, um, of being able to do it myself.
(Non-Hispanic African American/Black, 63 years old)
“It’s really nice to just do it at home. Easy.” (Non-Hispanic White, 59 years old)
“It was-it would keep me from making a trip to the doctor’s office waiting and going through that, where I could just put that (Tasso-M20) in my arm and have it fill it up on its own, and just remove it when it’s filled and put it in the mail, and you’re done.” (Non-Hispanic White, 56 years old)
Theme 2. The device showdown: Convenience and pain are major factors involved in a preference for Tasso-M20 versus HemaSpot HD. Participants indicated clear device preferences, which were mostly based on convenience and pain level. Some participants reported that they preferred the Tasso-M20 because it had fewer parts and required less of a “clean-up.” On the other hand, other participants reported preference for the HemaSpot HD because of their familiarity with finger pricking.
About Tasso-M20:
“It is. Are you kidding? I'm like, no, rub your arm, and you know, a little warm. Stick it in, and then watch the blood go. Oh, like, that God. You can do that—you can do that in the morning with your cup of coffee, okay [laughter].” (Non-Hispanic African American/Black, 63 years old)
“Um, it was really interesting. And it was actually—I would prefer using that kind of kit for blood collection in the-in the future as well, um, ’cause it was just—it was so easy. And it wasn’t—it-it—anything that I expected.” (Non-Hispanic White, 29 years old)
“Um, like I said, it’s easy to clean up. There’s no—there’s not too many factors when it come[s] to it. And I don’t have any hazardous waste afterwards. Basically, everything that's hazardous is going with the package.” (Hispanic/Latino 33 years old)
“I like that one on the arm. The arm one was super easy, super, super fun. I mean, I shouldn’t say fun.” (Non-Hispanic Asian, 39 years old)
About HemaSpot HD:
“It was—um, it was easy. I was surprised at, like, how much my finger bled. [Laughter] Um, so I had to make sure that—like, in the beginning, I had to wipe off the excess blood and then just drop it—to make sure it got into the kit, the-the l—the, um, receptacle like it was—’cause it’s kinda small...” (Non-Hispanic White, 52 years old)
“But it was—um, other than that, it was-it was, um, it was-it was very—it was very easy. I was, um—I-I—I don’t know, I guess I expected that for, um, for something that was, you know, self-administered, there’d be a bit more difficulty to the process, but it was very easy.” (Hispanic/Latino, 39 years old)
“It was a breeze. And it was really—as long as I could trust that there’s enough—um, depending on what labs I needed done, you know, every six months or whatever— as long as I could trust that that’s—whatever I can give in that little, you know, kit, if—that I can trust that that’s gonna be enough [for an HIV viral load], I feel confident ’cause it’s—it was so easy.” (Non-Hispanic White, 59 years old)
“Um, it-it—I was like—like I said, so I was a little put back at first, and I was like, “Sh*t, this is gonna hurt.” And I was just like, “Let me just get it over with.” One, two, three, and click. Once it made the click sound, it was like, “Okay, it’s not that bad.” It really—- really wasn’t that bad.” (Hispanic/Latino, 32 years old)
Theme 3. Clear instructions are crucial to self-sampling of DBS. Participants described how they relied heavily on both written and video instructions. Some expressed how their understanding of the written instructions was complemented by the video. Participants’ recommendations included adding more realistic images to written instructions (e.g., images of actual people conducting the blood collection), not relying on illustrations, and including contingency plans.
“It seemed like that based on the instructions that I read, and in the process once I did it, it-it felt—like I felt comfortable that-that I had achieved what I needed to do with it, you know. Like I-I was successful like I felt like.” (Non-Hispanic White, 52 years old)
“What do I do if I can't make this work?" Um, you know. And, uh—yeah. So that was a big problem I ran into with that one. And considering it's happened to me twice now or two other—two times, it's—I—it—I mean, it may be something about me or whatever, but, um, it doesn't seem to be working too well.” (Non-Hispanic White, 50 years old)
“Um, the illustrations were not real pictures. They were—you know, the simulated picture. But not—I think it had definitely been ill—it would have been-it would have been better to see it, um, see a real picture.” (Non-Hispanic Black/African American, 37 years old)
About the Tasso-M20 Instructional Video:
“Yes. Um, the video was definitely a lot more helpful, especially for the one that went on the shoulder.” (Non-Hispanic White, 29 years old)
About the HemaSpot HD Instructional Video:
“And that was-that was a great thing to have as a QR code. You just scan it there. The video was very well informative—oh. Well, yes. The video was informative.” (Non-Hispanic Black/African American, 37 years old)
Theme 4. Privacy and confidentiality are important considerations.
Participants described how the discreet packaging protected confidentiality. They also reported that privacy would be more important if they did not live in an “accepting” neighborhood or lived with family. Participants enjoyed the additional privacy able to self-collect their blood samples at home.
“I don’t share my business with anybody el—anybody else, so, I mean, it’s kind of a—I liked the fact that it was sent to the-to the house, and, you know, it was—you know, nobody really had to be involved with it or whatever.” (Non-Hispanic White, 44 years old)
“I mean, privacy is really important to me. Um, I just—I guess I have confidence in the fact that it’s a university study and, um, you know, we’re—uh, the—each person is rec—um, is assigned a certain, um, number code. Um, I-I feel that my data is safe.” (Non-Hispanic White, 45 years old)
“So, if I’m not living in a place where I can be my free self, then sure, there might be some-some hesitation there.” (Non-Hispanic Asian, 39 years old)
“Well, I mean, I guess somebody who doesn’t have the privacy in their own home to be able to do something like that, if-if they’re living with other people that-that they haven’t told that they are HIV-positive, then they might have a problem being able to get away, or go into the bathroom, or if they have their own bedroom, to go in there to do it. Um, and likewise with the stigma. They wouldn’t want somebody to see them doing it, and then that person ask questions. “Well, why or what are you doing?” “Why are you doing this?” “What’s that for?” Um, I can see where those two might be problems.” (Non-Hispanic White, 56 years old)
Theme 5. Despite the ease for some individuals, barriers to research persisted for others. Although there were several aspects of the study that made participation easier, participants discussed how people with substance use disorders and individuals with disabilities may struggle to complete all aspects of the study.
“Yeah, I was gonna say, like, the primary thing that I can think of would be the drug use that, um, perhaps they’re in a bad place and, even though they seemed, like, at the time committed to doing this, they maybe didn’t have follow through because they were using too much, um, which can happen. Um, um, and then the other barrier would be the—depending upon what type of residency they have, um, if it’s-if it’s not their own home, there might be some apprehension to receiving the package, um, especially if it’s like a-a room shared kind of situation.” (Non-Hispanic White, 33 years old)
“So it’s easy for me. And I’m not disabled. I can move around easily. So, um, it wasn’t a problem. But I think just maybe in some—uh, some people with HIV long term may—you know, maybe people that are older and disabled and might have a little trouble just, you know, getting to the post office or whatever.” (Hispanic White, 59 years old)
Participants also identified trust in research and intersectional stigma (e.g., HIV, substance use, sexual minority status) as barriers to participation, but also mentioned the importance of structural barriers, like housing.
“More like a stigma or just, you know, their-their own personal—just, you know, feeling some type of way because of the situation. Um, anything-anything that has to do with substance abuse, they’re very, like, private or anything like that.” (Hispanic/Latino, 33 years old)
“Um, probably I would say, um, housing maybe. Some place people can do it, you know, confidentially. And then maybe mistrust in the medical system, especially those that may be from African-American descent.” (Non-Hispanic White, 51 years old)
“Um, just if people—I think stigma would be part of, you know, having a housing, so people don’t see you doing it, and asking you questions. Then you may have to disclose, you know, why you’re doing this, or you have to lie, you know. So, I think the stigma is still there regarding, um, HIV. So, I think that’s definitely probably one of 'em. That’s why I was saying like if somebody had their own place to do it, then they don’t have to worry so much about that.” (Non-Hispanic White, 51 years old)
Theme 6. Compensation was generally considered appropriate. Participants generally indicated that compensation was proportional to the time burden and pain experienced. Participants recommended including other methods of payment (e.g., gift cards other than Amazon and other cash applications).
“Just ’cause, I mean, it really wasn’t a whole lotta time, and, um, uh—- you know, it’s a hundred—what is it?—$130. That’s not bad for a couple hours’ work.” (Non-Hispanic White, 44 years old)
“It would've been nice to have more, but, you know, it-it is still something that, you know, that is gonna—that is much appreciated.” (Non-Hispanic White, 50 years old)
“I mean, um, es-especially now that, you know, gas has gone up since then, um, I would probably say maybe like—I don't know. Um, 40, 50 max. I mean, I still think 30 would still be adequate enough now. It's not like, um, it was that difficult or, you know, I had to take a sick day or something,” (Hispanic/Latino, 29 years old)
“The original sur—yeah, sur—the original survey, I would do the 30. And then the actual process [self-collection], I would do the 50, just because I feel like the compensation goes more with the process, like they match up more that way.” (Hispanic/Latino, 22 years old)
Some participants indicated that compensation amounts should be reallocated to different study tasks (e.g., $30 for survey completion versus $50 for device return).
“I mean, technically speaking the two phone calls [assessment and follow-up] are longer than the amount of time it should’ve taken to collect the blood. But I just felt like that was so much more invasive.” (Non-Hispanic White, 52 years old)
Theme 7. Previous experience with self-sampling contributed to acceptability. Participants reported that previous experience or exposure to finger pricking, or any type of self-collected blood sample, made collecting blood samples using the devices less challenging. Participants explained how previous experience with self-sampling for other chronic medical conditions (e.g., diabetes) made the study procedures less daunting and provided some level of “peace of mind.”
“Back to my previous experience with, uh—in the—with work with the diabetes field, um, there was a-a device, uh, called the Omnipod that was like a big—it’s a very similar type situation, but, uh, it actually delivered insulin. So, but-but it’s gonna get, uh, kind of prick the-the skin, if I remember right, so I was familiar with the concept of how that would work.” (Non-Hispanic White, 52 years old)
“Um, so I do have a father that’s diabetic, so have dealt with pricking the finger, you know, like that whole process. I have had—I’ve dealt with that. I myself am pre-diabetic, so I’ve—I’ve had to, you know, test my blood or whatever in that aspect. So, I was comfortable with it because I’ve-I’ve already done it before.” (Hispanic/Latino, 33 years old)
“So, I-I had to use the second lancet to-to-to do it on the finger. Um, but definitely, um, my past experience with that was kinda helpful.” (Non-Hispanic White, 29 years old)