Table 2 Themes and exemplar quotes related to concerns and barriers of using of the hypothetical app as well as suggestions to mitigate concerns and encourage participation
App feature | Concerns and barriers | Suggestions to mitigate concerns |
|---|---|---|
1. Adherence messages | • Unintentional disclosure of sensitive health information “Just don’t say HIV. A lot of people aren’t comfortable with that… A lot of people, and I can only just speak for myself, but a lot of my associates don’t know. I’m pretty sure I would lose friends if they knew.” • Potential low impact of adherence messages due to influence of peripheral factors “I don’t know if—excuse me. I don’t know if an app would even help me because you send me a text sayin’, ‘Take your meds,’ if I’m doin’ meth and haven’t taken it, it’s like, ‘Oh, well.’ I still won’t take it because you have to take your meds with the food.” | • Customize messages to individuals’ levels of comfort with disclosure “… personalize it to different people. Some people are more private about their HIV status or AIDS status than others are.” • “Code” reminders so that they are not directly about adherence “…you wanna keep it confidential, they won’t know that it’s about or meds or anything. You see what I’m sayin”? “Something like, ‘You have a doctor’s appointment today.’ Then you confirm.” • Provide messages related to factors that impact adherence and motivate other health behaviors “Staying healthy and having that kind of self-esteem and things that go deeper than medication. That sort of thing… personal habits.” |
2. Mood messages | • Discomfort with divulging negative emotions to others “I don’t know… Some reason, I just don’t want anybody to know that I’m goin’ through depression.” • Discomfort with self-awareness of negative emotions “Answering all those questions made me more aware of my feelings, and I didn’t necessarily like it…” | • Simplify mood questions “Mood wise, I would just keep it light, simple. Like… sunny or somethin’.” • Provide content to elevate mood “Probably something nauseating cute…like a little piglet wiggling its butt or something like that, just to cheer you up on the way.” “Create like an app where you can motivate at the same time… ‘you’re special, you’re a winner.’” |
3. MA messages | • Potential legal repercussions from disclosure of illegal activity “Yeah. I’m gonna have to know what were you guys gonna do with that information because I’m home this weekend. If I got a question like that, and I was using at that time, there’s no way I’d wanna answer you that I’m using… Yeah. I just verified it, so come get me.” • Triggering of cravings and meth use “I’m more inclined to think that askin’ that question may cause some people who might be tryin’ to stop to relapse.” • Impingement on personal autonomy “It’s something personal, but still, it’s your decision to stop or not. We know that it’s not good to use that drug. We already know. We might have many motives to use it.” | • Explicitly state nondisclosure to law enforcement during consent procedures “To satisfy his paranoia, that you guys say in the contract or whatever that you’re not gonna call the police because you’re using meth, or any drugs.” • Code questions to indirectly refer to MA use “Have two faces. A good or a bad. Then just have those faces determine whether—meaning, did you use, or did you not use? … What color are you today? Then just pick—if you use that day, you just pick a certain color. It doesn’t have anything to do with anything connected to the law enforcement or whatever.” • Direct attention to positive behaviors, e.g., duration of abstinence “…days clean. Have a check mark where you can mark how many days you been clean. Thirteen, fourteen. Have you missed—if you’re not clean, just X or somethin’… use a more positive term.” • Advocate harm reduction “It would be a good tool, at least to avoid those skipping medications that I have when I use drugs, if I decide to keep on using drugs… it reminds you right away that you have to take care of yourself, even you didn’t take care of yourself because you were using the drug, right?” |
4. Location assessment | • Potential for legal repercussions “We won’t have to be going to jail because of what we were honest about, or connected to, in the research study… Well, as a result, boom, you’re charged possession and whatever… People worry about these things.” • Invasiveness of continuous monitoring “It’s like having a camera in every corner in every alley.” | • Allow self-reporting of movements and tailor messages accordingly “Maybe you could change it, word it as such, ‘Steppin’ out? Don’t forget to pack fun pack or whatever.’ That way, if they’re leavin’ and goin’ somewhere, I need to make sure I take this with me.” |
5. Overall study features | • Potential for inappropriate timing of assessments “When I’m using, I don’t answer my phone, period. The ringer’s down. I don’t wanna hear it ring. I don’t wanna hear it buzz… that brings my high down, then I have to get high again, just to get where I was before.” • Participant burden with repeated assessment “…when you pushin’, then I be like, ‘Who you?’ … When it’s comin’ to me like that, I’m like, ‘Forget you.’ That put me, more or less, in a bad mood, and I won’t even bother to answer the question.” • Benefit the study and contributions to knowledge “It’s a no-brainer. Drugs get in the way. They do. That’s period.” • Inequitable access to smartphones and data plans “I don’t think the app—not everybody pays their cell phone bill on time, so they get cut off or, especially if they’re reliant on an Obama phone, they’re limited to two gigabytes of data, which gets used up quickly with a movie. Then they can’t go online to do that.” • Maintaining privacy on phones “I’ve got a Smartphone and an Obama phone, and my friend who’s down and out, to get him back on his feet, I loaned him my Obama phone, and he sold it for food… The phones are traded commodities out there… Yeah…In fact, it passed through five hands before I found out who had it.” | • Allow “snoozing” of questions “What if they had a question that you could check the box, where you could answer later…?” • Allow retrospective reporting of use “Catering the survey for your needs would be something like the day after, or it’s three days later, and then they do a retrospective survey.” • Increase autonomy in deciding levels of participation “What if you could enable something like that or disable it, so you can use it sometimes, but if you’re like, ‘Okay, I find this too much,’ so you can turn on or off?” • Increase variability and diversity of content “You want the app to appeal to people and not turn them away. You gonna wanna have a lotta customization in it… it’s designed this way so they would look forward to goin’ into the app, maybe participating in things that they like. You might have several different things they could participate in on there… It’s like, ‘Let me see what they have to say today?’ I’m gonna look at it whether I take it [ART] or not.” • Provide study phones with data plans “… you can — not to bring up the other doctors, but Dr. [HNRC researcher’s name], you can do his study for nine months, eight months, and you get an iPhone… They tell you to use it for, the study…That might be helpful to someone.” • Bolster app security “I like the idea of an app with a sign-in because phones get lost all the time. Usually, they’re stolen by your friends who know your access code to get in the phone.” “…you know the information is encrypted or double encrypted and all that kind of stuff… give one—the security, the sense of security to answer a personal question.” • Clear consent language and periodic reconsenting “Ask permission. Do we have permission to check on your sobriety, yes or no? Maybe pose the question again. Could we ask you in 30 days? How about 90 days? Somethin’ like that. Permissions for everything that you might wanna do on that app, but not too many because then it becomes intrusive.” |