We identified 6 main themes regarding the acceptability and feasibility of receiving a long-acting injection to treat HIV and the potential of receiving that injection outside a traditional clinic setting. These themes, along with illustrative quotes from interviews, are described below.
Participants are knowledgeable about their HIV care and the importance of ART adherence
Participants spoke confidently about their care and what their laboratory values indicated about their health. Participants were motivated by being “undetectable” or working toward being undetectable. Participants understood that they needed to stay on their treatment over the course of their lifetime in order to maintain their health status. One individual stated “I know that I need to be on this medication to stay alive and have a better life for myself, for my future children and everybody in my life” (#23). Participants identified their overall health and well-being as a long-term priority and indicated a thorough understanding of their HIV care.
Despite recognizing the importance of ART adherence, participants cited several barriers associated with adhering to daily oral medication. These included forgetting to take their pill, prioritizing substance use, housing insecurity and non-HIV-related health issues as barriers to adherence. When asked about what they disliked about taking a daily oral medication, one participant stated:
It’s hard because I am currently homeless and in active addiction, and it is hard to get in to see a doctor to even get the prescription. And it’s hard to get it filled. And then, once I [finally] get through all those hoops, to hold on to the medication for [the] entire month is nearly impossible. (#11)
Participants consistently articulated that while they wanted to participate in treatment, the numerous barriers in place made adherence challenging.
Participants prefer a long-acting injection over a daily pill regimen
In most interviews, participants stated that treatment with long-acting injectable ART was preferable and would work well with their lifestyles. Participants cited the convenience of receiving a long-acting injection as a motivating aspect. One individual explained:
…because as long as you make it to the place to get that one month shot, you don't have to worry about anything else until the next month's appointment to get that one shot again. So, it eliminates a lot of pressure, a lot more responsibilities and stuff. So, I'm for it. (#17).
Participants believed that condensing their treatment into a single dose administered once a month would be less of a burden on their day-to-day life in comparison with taking a pill every day.
Participants also described other benefits of a long-acting injection, such as not needing to carry their daily oral ART on their person and not having to worry about their medication being stolen, as reasons they would prefer the injection compared to the oral medication. One participant shared, “I don’t have to remember to take it. I don’t have to go through the hoops of picking up the medication. Like I said, I don’t have to be scared that it’s going to be stolen from me on the street by people. Literally everything about it sounds wonderful.” (#13) Participants spoke of housing insecurity preventing them from having spaces to store their belongings including medications, and many participants stated that they would prefer to not carry any medication on their person, especially their ART.
Participants also believed that an injection would be better for their mental health. One participant stated “Well, I mean, it wouldn't own you. It wouldn't consume too much time. They [injections] would minimize what diagnosis feels like in your life.” (#1) Participants explained that their oral ART acted as a daily reminder that they had a lifelong health condition, and many indicated that this had a negative effect on their mental health. Participants felt that the long-acting injection would be less of a reminder, and would benefit their mental health.
Participants expressed concerns about injection safety and efficacy
Participants raised potential side effects of transitioning to the long-acting injection as a concern. One participant remarked “… because it's new, I would love to see what happens with other people first, how it works before I become a guinea pig….” (#2).
Participants were also concerned about the potential long-term effects of injectable ART, stating “I don't like the idea of a shot usually…anything that's going to be in my body for a month…[that] scares me…” (#11).
Participants also asked about the effectiveness of the new medication. One participant stated “I guess what's like the risk factor my body is going to reject the medication and becoming detectable again” (#9). Several participants acknowledged that they had worked hard to take their daily ART and were concerned that during the transition to the injectable, their viral load may become detectable. Many participants stated that they would want to talk to a clinician prior to switching regimens to ensure that questions they had about the injections safety and efficacy would be answered.
Participants had specific logistical aspects around the delivery of long-acting injections, including location of injection administration, that they believed would improve their ability to adhere
Participants emphasized that the location where they received the injection should pose minimal interruption to their daily routine. During interviews conducted at the Engagement Center, one participant stated “Is there any way if you can do it here [Engagement Center Tent]? That would be the best, the way [this place] is set up. The tent [or the] homeless shelter” (#15). Participants also reported that it was important that the space they receive their injection be safe and private. One stated “… I will be willing to receive it anywhere as long as it's a safe environment. [I would need to know] the place is legit. Not like some sketchy back alley or with a mad scientist.” (#5) While some participants indicated they would prefer to receive care in the HIV clinic over an alternative location, many stated that they would prefer to continue to receive their treatment at the community locations they accessed during their day.
Participants brought up transportation as a potential barrier, especially if they were not in close proximity to the injection location. One participant stated:
I wouldn’t be concerned about forgetting it so much as I would be more concerned about it on a winter’s day. Could I commute to get to it? How would I actually engage if travel was not possible? (#17)
Several participants asked whether transportation to their appointments would be provided, and several stated that they would have access to transportation services that would help them commute to receive their injection.
Participants spoke about the importance of frequent reminders and communications from their treatment team in order to remain adherent to the injection schedule. A participant specified:
I have [a] really bad memory. So, email, texts, call, do whatever you [have] to do to make constant communication. And I would say make sure that the person responds… so you know that they got it. (#8)
During the recruitment process, several participants asked the PT staff for assistance with accessing a cell phone and stated that they often lose or have their phones stolen, which they acknowledged as a barrier to receiving reminder messages.
Some participants stated that they would prefer to bundle their injection appointment with other services and appointments, such as meeting with their case manager, to reduce the overall burden attending a monthly appointment would have on their lives. “But I'd have to go down there…where my other services are, I would try to line it up with [my other] monthly appointments…so I can bang out both on one day,” stated one participant. (#15) A frequent question was how long injection appointments would take as participants determined whether they would want to schedule their injection on the same day as other appointments and the impact that would have on their day. Participants stated that flexibility with scheduling their injection appointments was crucial to their ability to adhere, and many specified that instability in their lives would make flexibility with appointment scheduling even more important.
Continuity of existing relationships was a motivating factor for many individuals when considering where they would prefer to receive their injection. One participant stated “…I have [the nurse at Project Trust’s] work number and so …I can reach out and …say, hey or [reschedule] if something popped up [on the day of my appointment].” (#3) When asked whether the relationship with their provider was important, another participant explained:
[I like to] know that the people that are treating me are just good people and they actually care about me and [don’t] just want to give me a shot and get it over with, but are people that I can actually build a relationship with. (#6)
Participants emphasized that having providers who understood their barriers to care and who understood their lifestyle would be a critical support in transitioning to a long-acting injection.
Most participants have confidence that they can become undetectable and then complete the oral lead-in required to begin receiving the injection
Despite their adherence challenges, participants overwhelmingly believed they would be able to complete the required 28-day oral lead-in to monitor for side effects successfully because they knew at the end they would be able to access a long-acting treatment that would ultimately be easier for them. One stated “I would try my best for those 28 days. Just knowing that the outcome would be the once a month shot, that would be really helpful.” (#3) Participants believed that their desire to transition to a monthly long-acting injection would be a strong motivator for them to strictly adhere to the oral lead-in.
While most participants thought receiving a long-acting injection at an alternative care location was preferable, some saw potential barriers that they believed would impact their ability to remain adherent to the injections
Participants believed that they would remember to get their long-acting injection as long as someone called or texted them to remind them. However, several participants stated that general instability in their lives, including substance use, may be a factor that would prohibit them from being able to receive the injection monthly. One participant stated:
The only problem I see with the injection is …because my life isn’t stable right now, I can’t sit here and say yes. Realistically, like, in a month from now, I could be in a detox, I could be in a CSS [Crisis Stabilization Service], I could be in a halfway house, you know what I mean. I can’t give myself the injection…, I can’t pick up a prescription for it. The pill form is at least very flexible. (#1)
Participants felt that having to present to a care site would be a potential barrier if they were in programs that prevented them from traveling to receive their injection.