Bangladesh’s rising HIV diagnoses among young adults prompt a qualitative study of the diagnosis journey
Bangladesh still has a low overall HIV prevalence, yet case detection has more than doubled between 2020 and 2024, reaching 1,891 reported cases in the most recently reported year. The increase has been especially visible in the 18- to 24-year age group, where the meaning of a new diagnosis extends far beyond virology or treatment access. For young adults, the route from possible exposure to confirmed infection can be shaped by fear, stigma, delayed testing, family pressure, and gaps in health-system contact long before antiretroviral therapy begins.
This protocol sets out a qualitative study designed to trace that route in detail. Investigators aim to explore the pathway to HIV testing and diagnosis, the factors that motivated testing, and the life outlook of young people living with HIV in Bangladesh aged 18 to 30 years. The study will also compare experiences between key-population participants and those from the general population, a distinction that is likely to matter because testing triggers, social risk, and access to care often differ sharply across those groups.
One sentence captures the urgency: diagnosis is not a single event, but the end point of a long and often concealed sequence of decisions.
A protocol built around stigma, emerging adulthood, and disclosure risk
The study uses semi-structured in-depth interviews and is guided by two conceptual frames: the theory of emerging adulthood and the HIV Stigma Framework. That pairing is clinically useful. Emerging adulthood is a period marked by identity formation, unstable relationships, shifting independence, and decisions about education, work, migration, and sexuality. HIV-related stigma, meanwhile, can affect whether a young person seeks testing at all, how soon they disclose to family or partners, and whether they remain in care after diagnosis.
The planned sample will use purposive maximum-variation sampling and aims to recruit 20 to 30 participants aged 18 to 30 years who were diagnosed within that age range and are currently receiving antiretroviral therapy. Recruitment will be balanced between key-population and general-population participants. Interviews will be conducted privately in Bangla through Shaheed Suhrawardy Medical College Hospital and Ashar Alo Society in Dhaka. Recordings will then be transcribed, translated into English, and analyzed with the Framework Method in MAXQDA, with saturation assessed separately within each group.
The study design is intentionally narrow and practical. It focuses on people already linked to treatment, where the diagnosis pathway can be reconstructed with more detail and less immediate clinical instability than would be possible in an untreated cohort.
Why diagnosis timing matters for youth living with HIV
Late diagnosis in young people is not just a surveillance problem. It can represent missed opportunities for symptom recognition, testing after sexual exposure, targeted counseling, or confidential access to services that feel safe enough for adolescents and young adults. In HIV, every delay can increase the period in which viral replication continues unchecked and social uncertainty deepens. For a newly diagnosed 19-year-old, the consequence is often a double burden: the need to start lifelong treatment while also managing fear of exposure, school or work disruption, and the possibility of rejection.
The protocol is especially interested in what actually motivates testing. In practice, testing often follows symptoms, partner notification, routine screening, pregnancy-related care, or contact with a health facility for another reason. In key populations, the trigger may be shaped by outreach, peer contact, or prior awareness of risk. In the general population, the trigger may be more accidental and less planned, which can make the emotional shock of diagnosis more intense.
The interview plan aims to capture both risk and expectation
The planned interviews are designed to gather narratives about suspected exposure, decision-making around testing, the circumstances of diagnosis, and expectations for the future. Those future expectations are not a soft add-on. Among young adults with HIV, plans for education, marriage, fertility, work, mobility, and disclosure are often reorganized around the diagnosis itself. A diagnosis in this age band can reset the trajectory of early adulthood, especially in settings where stigma remains strong and social support is uneven.
By comparing key-population and general-population participants, the study may expose where pathways converge and where they diverge. A person from a key population may have had repeated contact with prevention messaging but also a stronger fear of discrimination. A young person from the general population may arrive at diagnosis later, with little prior suspicion and less experience navigating HIV services. Both paths can lead to the same clinic door, but the road there is rarely the same.
Ethics, confidentiality, and the limits of access are central to the protocol
The project has ethical approval from the Institutional Ethical Review Board of Shaheed Suhrawardy Medical College, Dhaka, with written consent from Ashar Alo Society and PLHIV Network Bangladesh. Each participant will provide written informed consent, identifiers will be removed, and anyone distressed during the process will be referred for counseling and psychosocial support.
Those safeguards are not procedural decoration. The planned transcripts will contain the kinds of contextual detail that can make re-identification possible in a small, sensitive population, particularly when participants belong to groups whose identities or behaviors are criminalized or heavily stigmatized in Bangladesh. For that reason, the underlying interview data will not be made publicly available. De-identified data may be shared on reasonable request, but only with institutional review and within the limits of consent and data-protection requirements.
The recruitment route also creates a clear boundary around interpretation. Because participants will be drawn through one gatekeeper organization in Dhaka and must already be on treatment, the study may miss young people who remain undiagnosed, are not in care, or have dropped out after diagnosis. Those missing voices may be the ones most affected by stigma, unstable housing, fear of disclosure, or untreated mental health strain.
What this protocol can still deliver
Even before any interviews are completed, the study addresses a gap that matters for service design in Bangladesh: how young adults actually move from possible exposure to confirmed infection, and how they imagine their lives after that moment. Quantitative surveillance can count cases, but it cannot explain hesitation, secrecy, shame, or relief. It cannot show why one young person seeks testing after a single exposure while another waits through months of uncertainty.
If the interviews are carried out as planned, the resulting analysis could help the National AIDS/STD Programme and partner organizations refine youth-facing testing strategies, disclosure support, and post-diagnosis counseling. It may also clarify whether key-population youth need a different pathway than general-population youth, not only for diagnosis but for retention in care and long-term psychosocial support. The study is limited by its clinic-linked sample and by the deliberate exclusion of people outside treatment, yet those limits are also a reminder of the larger unanswered question in Bangladesh: who never reaches the diagnosis point at all, and why.