Breaking Down Barriers to HIV Testing: Lessons from Our Community Engagement Work

HIV testing is one of the first steps towards HIV prevention and care. But making testing available does not automatically mean that people will use it. Across sub-Saharan Africa, studies have identified barriers ranging from fear of a positive result and HIV-related stigma to concerns about privacy, healthcare workers' attitudes, cost, and the difficulty of reaching services.

These barriers point us to the understanding that while someone may know that HIV testing is available, they may still decide not to test. They may be worried about being seen at a clinic, unsure whether their information will remain private, unable to afford the journey, or uncertain about what will happen if the result is positive. In other words, knowing that a service exists is not the same as feeling able to use it.

This is where listening becomes important. If we only look at testing numbers, we can see that a gap exists without necessarily understanding why. Community engagement helps researchers move beyond that gap. It creates opportunities to hear directly from the people who use, avoid, or struggle to access health services and to understand what those experiences mean in their everyday lives.

At the Person-Centered HIV Research Team (PeCHIVReT), community engagement is part of how we approach research. We involve people and communities affected by HIV in the research process because their experiences can help make research more relevant, respectful, and responsive to real needs. This sits alongside our focus on stigma reduction, tailored interventions, empowerment, and outcomes that matter to people.

Listening can also change the question researchers ask. Instead of asking only, "Why are people not testing?", we can ask, "What makes testing difficult for this person?" The difference may seem small, but it changes where we look for solutions. If distance is the problem, bringing testing closer may help. If privacy is the concern, a more discreet testing option may be appropriate. If young people find conventional services difficult to navigate, involving them in designing those services may reveal approaches that researchers would not have considered themselves.

Evidence supports this idea. Community-based testing approaches have been shown to reach people who may be missed by facility-based services, while HIV self-testing can offer greater privacy, convenience, and autonomy for some users. At the same time, these approaches are not solutions on their own. Self-testing, for example, still needs clear information and pathways for confirmatory testing and care.

This is why community engagement should not be treated as a step that happens before the "real" research begins. It can shape what the research asks, how an intervention is designed, and how its success is understood. PeCHIVReT's work reflects this approach across different areas of HIV research, including community-led approaches to antenatal care and HIV testing, digital and telehealth approaches to HIV and STI prevention, and research that places young people at the centre of intervention design.

The value of this approach is not that communities will always provide a simple answer. Sometimes they will identify problems that require changes at several levels. A testing service may need to be closer to the community, but it may also need better privacy. Young people may want digital options, but they may still need a trusted person to guide them afterwards. A person may be willing to test, but unable to access the treatment, PrEP, counselling, or other services they need next.

This means that successful HIV testing cannot be measured only by how many people receive a test. We also need to ask whether people felt safe using the service, whether they trusted the process, whether they understood their results, and whether they could access the next step. These questions help us see testing as part of a person's wider experience of healthcare rather than as a single event.

For us at PeCHIVReT, this is one of the reasons community engagement matters. Research should not simply collect information from communities and move on. It should create a pathway through which what people tell us can influence what we study, how we design interventions, and how we communicate our findings.

The barriers to HIV testing are not always found in the testing room. Some begin much earlier, in the journey towards deciding whether testing feels accessible, safe, private, and worthwhile.

If we want HIV services to reach people, we have to listen to the people we are trying to reach.