Retention in intensive adherence counselling as a pathway to viral suppression among virally non-suppressed adolescents and young people living with HIV in east-central Uganda: a sequential explanatory mixed-methods study

Imagine the human body as a bustling city, and the immune system as the city's police force. For people living with HIV, a tiny, invisible virus tries to sneak in and disrupt the peace. Fortunately, we have a powerful tool called Antiretroviral Therapy (ART), which acts like a high-tech shield, keeping the virus locked down and the city safe. When the virus is completely under control, we say the person has achieved "viral suppression." It's the gold standard of health in this context.

However, sometimes the shield develops a crack. The virus starts to peek through again, meaning the medication isn't working as well as it should. This is called "virological non-suppression." When this happens, doctors don't just switch the medicine immediately; first, they try to fix the crack in the shield. They use a special strategy called Intensive Adherence Counselling (IAC). Think of IAC as a series of three intense, one-on-one coaching sessions designed to figure out why the shield is cracking. Is it because the person forgot to take their pills? Are they stressed? Is the journey to the pharmacy too hard? The goal is to get the person back on track so the virus stays suppressed. But here's the catch: this coaching only works if the person actually shows up for all three sessions. If they drop out halfway through, the crack in the shield never gets fixed.

This brings us to a fascinating study from east-central Uganda, where researchers decided to investigate a specific group of people: adolescents and young people living with HIV (AYPLHIV). These are the teenagers and young adults, aged 10 to 24, who are navigating the tricky waters of growing up while managing a chronic health condition. The researchers wanted to know two big questions: How many of these young people actually stick with the three-session coaching plan (IAC), and does sticking with the plan actually help them get their virus under control again? They didn't just look at numbers; they also talked to the young people, their families, and the doctors to understand the "why" behind the numbers.

The Great Drop-Off

The study looked at 580 young people who had their virus levels rise and were enrolled in this intensive coaching program. The results painted a picture of a slippery slide. At the very start, 100% of the participants showed up for their first session. That's a great start! But as the program went on, the numbers began to tumble. By the second session, only about 87% were still there. By the third and final session, that number had dropped to roughly 65%.

In simple terms, about one in three young people (35.2%) didn't finish the full course of coaching. The biggest drop happened between the first and second sessions, suggesting that the second month is a critical moment where many people decide to quit.

The "Finish Line" Effect

The researchers then asked: Does finishing the coaching actually matter? The answer was a resounding "Yes." They compared the health outcomes of those who finished all three sessions against those who didn't. The results were clear: the young people who stuck with the program were significantly more likely to get their virus suppressed again. Specifically, 59.6% of those who completed the full coaching cycle achieved viral suppression, compared to only 43.6% of those who dropped out.

This suggests that the coaching itself is a vital bridge. It's not just about talking; it's about the act of staying engaged that leads to better health.

The Good, The Bad, and The Surprising

The study dug deep to find out what helped people stay and what made them leave. They used a clever framework called COM-B (Capability, Opportunity, Motivation-Behavior) to organize their findings, which is like sorting the reasons into buckets of "Can they do it?", "Is it possible for them?", and "Do they want to do it?"

What Helped (The Boosters):

• The Right Coach: It turns out who is doing the talking matters a lot. Young people were much more likely to stay if they were coached by a dedicated counselor rather than a nurse. The researchers found that counselor-led sessions were nearly three times more effective at keeping people in the program. Why? The young people felt heard. They said counselors listened to their life stories and helped them plan, whereas nurses were often seen as rushed or even scolding.
• Peer Power: Having a "peer supporter"—someone of a similar age who has successfully managed HIV—was a huge booster. It gave the young people hope. Seeing someone like them succeed made them think, "If they can do it, I can too." This motivation helped 1.35 times more people stay in the program.
• Proximity: Geography played a role. If a young person lived within 5 kilometers of the clinic, they were more likely to finish. It's a simple math problem: shorter trips mean less money spent on transport and less time away from school or work.

What Hurt (The Barriers):

• Emotional Weight: Many young people struggled with the emotional side of having HIV. Those who reported feeling distressed, hopeless, or unable to cope with their status were much less likely to finish. It's hard to show up for a meeting when you feel like there is no future.
• The "Substitution" Trap: This was the most surprising finding. Usually, we think having family or community helpers (like Village Health Teams) is always a good thing. But in this study, having a home treatment supporter or support from a community health worker was actually linked to lower retention. Why? The researchers discovered that sometimes, these supporters accidentally took over the job of the clinic. A parent might say, "I'll remind you to take your pills," and the young person thought, "Great, I don't need to go to the clinic for counseling then." They substituted the formal, professional help with informal family help, and then stopped showing up.
• Disrupting the Routine: For some, the coaching program felt like a punishment. Many young people were used to getting their medicine every three months or picking it up at a community spot. The IAC program required them to come to the clinic every single month. This sudden change broke their comfortable routine, making it harder to attend, especially if they had to ask for time off work or school.

The Takeaway

This study tells us that getting young people to finish their HIV coaching isn't just about giving them information; it's about making the experience work for their lives. It suggests that to keep these young people healthy, we need to hire counselors who truly listen, bring in peers who offer hope, and perhaps rethink how we deliver these services so they don't feel like a burden.

The researchers didn't just find that people were dropping out; they found out why. They showed that emotional distress, the wrong kind of "help," and inconvenient schedules are the real enemies of retention. By fixing these specific issues, health programs might be able to help more young people finish the coaching, get their virus suppressed, and keep their immune systems strong. It's a reminder that in the battle against HIV, the human connection is just as important as the medicine.