The Journey to HIV Diagnosis: Private and Public Lives

<p dir="ltr">Background: Late Human Immunodeficiency Virus (HIV) diagnosis remains a critical public health concern in Aotearoa/New Zealand (NZ) and globally, with 25–55% of new cases worldwide and 38% in Aotearoa/NZ classified as late. Late diagnosis, defined by a CD4 cell count below 350 cells/mm³, often signifies undiagnosed HIV infection spanning six to eight years. This delay exacerbates health complications and increases the risk of onward transmission. Despite advancements in HIV prevention and treatment, barriers to early diagnosis persist.</p><p dir="ltr">Aim: To investigate the factors contributing to late HIV diagnosis, focusing on health-seeking behaviours, risk perceptions, and delays experienced during the diagnostic process.</p><p dir="ltr">Methodology: Using qualitative interpretive description methodology, this research explored the pre-diagnostic experiences of 22 individuals living with HIV. Semi-structured interviews were conducted with 17 participants diagnosed late, including four women and five diagnosed promptly. Data analysis employed both inductive and deductive approaches within the framework of the Health Belief Model, focusing on the decision-making processes that influence diagnosis.</p><p dir="ltr">Findings: Four key themes emerged: (1) Risk-profiling of patients - many participants were incorrectly perceived as outside conventional categories at-risk of HIV; (2) HIV-related health literacy was low, even among high-risk individuals, compromising their ability to recognise risk and seek earlier testing; (3) Misconceptions about HIV even during healthcare engagement often resulted in HIV testing being overlooked even when participants explicitly requested sexually transmitted infection screening; (4) Participants’ recommendations for improving testing processes.</p><p dir="ltr">Implications: The findings highlight the need to enhance HIV health literacy and advocate for universal, proactive testing strategies. Routine inclusion of HIV testing in sexual health assessments and testing individuals with unexplained illnesses, irrespective of traditional risk profiles, is essential to minimising diagnostic delays and improving health outcomes.</p>