A large survey of people attending HIV clinics in the UK has found that those individuals who chose not to disclose their HIV status to other people were no more likely to suffer from depression or anxiety, to have difficulty adhering to antiretroviral therapy or to have worse HIV outcomes, the British HIV Association conference in Brighton, UK, was told. Although it’s often taken for granted that being able to talk about your HIV status is an essential part of living well with HIV, there are few data to demonstrate this.
The ASTRA (Antiretrovirals, Sexual Transmission Risk and Attitudes) cohort recruited 3,258 participants at eight English HIV clinics in 2011 to 2012. The data presented at the conference considered disclosure to a stable partner, family, friends and work colleagues. Talking about HIV with casual partners was not covered. For each group of people, respondents were asked if they had disclosed to nobody, to some people, or to most or all of the group. A significant minority had not talked about their HIV status with anyone at all.
Among gay men living with HIV, 5% had not disclosed to anyone at all. Moreover, for each group of social contacts, significant numbers of gay men did not reveal their HIV status to anyone in that group – 40% did not disclose to any family, 14% did not disclose to any friends, 54% to work colleagues and 5% to their stable partner. Gay men’s disclosure was greatest to friends – 56% disclosed to some friends and 30% to most or all of them. While over a quarter were open with most of their family members, the 40% who did not disclose to any family members was higher than in heterosexual people.
Among women living with HIV, 16% had disclosed to no-one. Again, significant numbers did not talk about HIV with anyone in a particular social group – 33% did not talk to family, 42% to any friends, 84% to any work colleagues and 13% to their stable partner. Women disclosed the most to family – 47% disclosed to some and 20% to most family members. Very few women disclosed at work.
The picture for heterosexual men was broadly similar to that for women, with 17% not disclosing to anyone at all. However, a larger number of men (56%) had not disclosed to any friends at all.
Across all groups, individuals who had been diagnosed for a shorter period of time, black people and older people were less likely to disclose their HIV status. Gay men who belonged to an organised religion were less likely to disclose.
But does non-disclosure matter? Is it associated with poorer health outcomes? While a quantitative survey, completed on a single occasion by respondents, has some limitations in terms of the insight it can give into the quality of people’s lives and relationships, these data are reassuring.
Mental health difficulties and adherence problems were quite common among survey respondents. But they weren’t more frequently reported by people who hadn’t disclosed to anyone. After statistical adjustment for other factors that could skew the results, rates of the following were very similar in people who disclosed and people who did not: low social support; symptoms of depression; symptoms of anxiety; problems with adherence to HIV treatment; and a detectable viral load. In fact, some of the data suggested that having disclosed to most or all friends and family was actually associated with poorer outcomes in gay men. A more selective disclosure strategy was associated with better outcomes.
Marina Daskalopoulou concluded that non-disclosure appears to be a way of coping “which is not necessarily linked to poor mental health or difficulty managing treatment.”