A Closer Look at the Perceived Factors Contributing To Late HIV Diagnoses: A Qualitative Study among People with HIV

Late HIV diagnosis is an obstacle to ending the HIV epidemic. This study aimed to identify perceived reasons for late HIV diagnoses through semi-structured interviews among people with HIV. Researchers used the social-ecological model (SEM) to examine how factors at the individual, relationship/interpersonal, and community levels affect timely HIV testing and diagnosis. Nineteen participants who had a CD4 count below 350 cells/µL at the time of their diagnosis (mean age 51.3 years, 5 [26%] cisgender female, 9 [47%] non-Hispanic Black, 7 [37%] non-Hispanic White) and who lived throughout Florida were recruited from the Southern HIV and Alcohol Research Consortium (SHARC) contact registry. Interviews were conducted between December 2023 and March 2024. Common individual-level reasons for late diagnosis included lack of HIV knowledge, denial, avoidance, substance use, and health issues that led to testing. At the relationship/interpersonal level, participants were exposed to HIV by trusted sexual partners, while others experienced stigma that prevented them from seeking testing. At the community level, limited access to healthcare and missed testing opportunities with healthcare providers were major factors contributing to late diagnosis. Our findings highlight the need for research and interventions that address multiple levels of the SEM, as well as targeting both community members and healthcare providers. These results can inform strategies to increase HIV testing, reduce late diagnoses, and support efforts to end the HIV epidemic.