One in two people with HIV reveals their positive condition to the virus only to the health team they are followed by. And it is the most clinically fragile people who struggle to talk about their HIV status outside the healthcare context, highlighting how self-stigma, a consequence of discrimination, is a transversal problem and that needs to be investigated by those around them. people with HIV, primarily doctors and nurses. This is what emerges from the results of a survey presented at the Italian conference on Aids and antiviral research (Icar) 2022, underway in Bergamo.
Self-stigma is a major risk factor related to negative health outcomes. Specifically, the lack of disclosure of one’s HIV-positive status can be a good surrogate indicator of self-stigma. The results presented this year, concerning a sample of 531 people with HIV, are part of the national survey that involved the centers of the ‘Icona’ cohort, with the support of patient associations and the support of ViiV Healthcare. Some preliminary results had been illustrated last year, and the evidence that emerged this year emphasizes how important it is not to ignore all aspects of health and sociality of the person with HIV, as they are connected to the state of well-being or malaise.
The survey – reports a joint note from the Icona Foundation and ViiV Healthcare – therefore highlighted that 48% (257 people) revealed to someone (therefore besides the health team that takes care of them) the state of HIV-positivity, against 52% (324) who did not. There was no statistically significant difference between these two groups regarding the burden of treatment and disease, however the recent diagnosis, the greater immunological impairment and the initial phase of the therapeutic path seem characteristics more related to the fear of talking to others about one’s condition. . In particular, it has been seen that these are also those people who ask to speak to the health team about other health topics besides HIV and who also wish to have information on new treatment options.
There is no particular difference in the self-reported health status between those who go out for HIV and those who do not. While it is striking – the note continues – how the failure to reveal HIV infection outside the health care environment particularly affects the most fragile people with HIV as shown by the independent association with low Cd4, highlighting how self-stigma, consequence of discrimination, is a transversal problem that needs to be brought to the attention of those around (health and non-health) people with HIV; moreover, the more immunocompromised people probably feel more the burden of the infection, which in their condition can lead to serious illness.
“Taking care of people with HIV can no longer ignore the experience of the person regarding the disease itself to define the interventions”, underlines Antonella Cingolani, Catholic University of S. Cuore, Fondazione Policlinico Gemelli, Irccs, of Rome. “The aspects of sociality, therefore of revelation or not of HIV-positivity, constitute a good indicator to alert the clinician and the health team about support and proposals for specific interventions”.
“These are data that, despite the limits of the investigation that we have always made explicit, offer an important starting point for building other research projects that aim to photograph and promote new and increasingly targeted health interventions”, explains Alessandro Tavelli, Study coordinator of Fondazione Icona and data manager of the survey, of Milan. “The Icona network and the collaboration with patient organizations – concludes Antonella D’Arminio Monforte, Asst Santi Paolo e Carlo, Milan and president of the Icona Foundation – allow us a privileged observatory: try to mitigate as much as possible the already difficult context of clinical frailty is a duty for the network of clinicians and associations “.