Women disclosed to family members more often than men, but disclosed to sexual partners only half as often as men: in fact, women were more likely to disclose to members of the wider community such as friends and work colleagues than to sexual partners, and this difference persisted over time.
The median time to disclosure to family was less than a day after diagnosis: in other words, most people didn’t hesitate to give the news to a family member, but agonised over telling lovers. Immediate disclosure to family was more common if people were immediately eligible for HIV treatment (ART), but was no higher to sexual partners, and people not on ART tended to disclose more over time so that by 4.4 months after enrolment, disclosure rates were not related to ART.
Researcher Benjamin Bearnot said that disclosure to family members was associated with support for safer sex, greater social support and improved adherence to ART. However, he could not speculate on the reasons people might not disclose to sexual partners. A study from Zambia (see separate report) showed that the main reasons people did not test were anxiety about being gossiped about, fear of taking treatment, and rejection by partners.
The study was among 687 HIV-positive people, 73% of them women. Sixty per cent were on ART with a median time of 54 days on treatment. CD4 counts were 138 cells/mm3 for patients on ART and 273 cells/mm3for patients off ART. Participants were asked if they had disclosed to family, partners or others and if so, how soon after diagnosis. Seventy per cent of women not eligible for ART had disclosed to a family member and 54% of men: rates in people on ART were higher, with 93% of women disclosing and 77% of men. By the end of the follow-up period (4.4 months), 83% of people not on ART and 99% on ART had disclosed their status to at least one person.
Disclosure rates to sex partners were far lower, with 45% of men disclosing, whether they were on ART or not, 25% of women on ART, and 22% not on ART. Disclosure to the wider community was 27% in men on ART and 21% in women; in people not on ART, 14% of women and only 10% of men had disclosed widely.
After four months’ follow-up, approximately 40% more people who had not already disclosed to family members had done so. Thirty per cent more people on ART had disclosed to the wider community, and 24% more women who were not on ART. In contrast, only 13.5% more women not on ART and 8% more women on ART had managed to disclose to partners, showing how difficult this was. Men seemed to find it rather easier, with 18% more men on ART and 24% more men not on ART (from a very low base) disclosing.
Did people eventually manage to disclose to sexual partners? Women didn’t. Fifty-nine people in the survey were married or in a long-term relationship and 80% of the men in these couples had managed to disclose to their wife, but only 41% of wives to their husbands.
The one bright spot in this is that people who were more recently diagnosed seemed to find it easier. Thirty days after diagnosis, only 58% of people diagnosed in 2003 had managed to share their HIV status with anyone; in contrast, 85% of people diagnosed in 2009 had disclosed to someone by then. A month later, there were no more disclosures in the group diagnosed in 2003 but 8% more of those diagnosed in 2009 had told someone, bringing the rate to 93%.
Asked if ART provision was making disclosure easier, Benjamin Bearnot said: “As knowledge spreads, we certainly hope so.”