How Does Hiding HIV Infection Impact Adherence?

While American actors reveal their HIV infection on stigma-busting TV commercials, for many around the world it is difficult to disclose that they have the once death sentence virus.

However, a recent study of patients in the United Kingdom found that general non-disclosure did not have an adverse impact on depression or anxiety symptoms, compliance with antiretroviral therapy (ART), and suppression of the virus itself. These results from a large survey of 3258 people infected with HIV suggested that, “choosing not to disclose may be a way of coping and is not necessarily linked to adverse psychological consequences or difficulty in managing treatment,” the British researchers wrote in AIDS and Behavior.

Disclosure does have some value, they added, in terms of access to more social and psychological support. An exception to non-impact of disclosure was among the group of men who had sex with men who had disclosed their HIV status to most or all of their friends and family. They reported higher rates of depression (PR=1.4, 95%CI 1.2-1.7), anxiety (1.3, 1.1-1.6), and ART non-adherence (1.3, 1.1-1.5).

Only 8.4% of the respondents had disclosed their HIV status to no one, but there were differences according to factors such as gender, sexual identification, race, age, the time since diagnosis, and employment status regarding the amount of disclosure and to whom. More heterosexual men and women than men who had sex with men (MSM) did not disclose (16.6, 15.7, and 5.0%). Heterosexuals were less likely to disclose to friends than family (47.4% vs. 35%), while men who had sex with men (MSM) were less likely to tell family than friends (40.1% vs. 14.2%). Black African heterosexuals had the highest rates of non-disclosure in general, and specifically to a stable partner (13.8%).

The authors noted that other studies have shown similarly higher rates of non-disclosure to stable partners among racial minorities in the United States. In the current study, rates of non-disclosure increased with age both in MSM and heterosexual men (10.5%). Women age 60 and older had the highest rate of non-disclosure (20%), as far as age goes. However, the authors cited a US study where predominately black clinic populations in the southern US where older patients were more likely to disclose than younger.

The workplace generally was not a place for disclosure for the participants in the UK study. Most of the participants did not reveal their HIV status to coworkers, with the highest rate (84%) of non-disclosure by heterosexual men and women. The study was based on a questionnaire administered to men and women with HIV at eight outpatient clinics in the UK from 2011 to 2012. Their demographic profile was: mean age of 45.2 years; 69% were men who had sex with men (MSM), of whom 89.3% identified as white; 10.8% were heterosexual men, of whom 57.6% identified as black African/other; 18.6% of whom identified as black African/other; median time since diagnosis nine years; 85% on ART of whom 86.6% suppressed viral load.

An important limitation on the results of the study was that it “did not include a measure of stigma in the questionnaire, which may have shed further light on associations with non-disclosure,” Marina Daskalopoulou of the Department of Infection and Population Health at University College London and her co-authors wrote. They added that their findings only reflect patterns of non-disclosure among a clinic-based population.

Also, non-disclosure may have been more prevalent among the 1,857 people who declined to participate in the survey. The authors concluded that their results could be “useful in informing discussions between patients and healthcare professionals about disclosure and ART adherence, and about support available to those who choose not to disclose their status.”