The study, the first of its kind, could be important for clinicians who work with HIV-positive men who are often uncertain whether to tell friends, family, co-workers or others about being diagnosed with the virus that causes AIDS. It was published in the April issue of the journal AIDS Education and Prevention.
The Centers for Disease Control and Prevention estimates that more than 1 million people in the nation were living with AIDS or HIV by the end of 2003. In Ohio, the Ohio Department of Health reports that about 15,000 residents had HIV or AIDS as of mid-2004. Nearly 16,000 Americans died of AIDS in 2004, with 529,000 AIDS-related deaths since 1981.
"I was very surprised at how little regret we found, because you see the angst in HIV-positive men who deliberate very carefully on whether or not to tell people," said Julianne Serovich. Serovich is the lead author of the study and chair of Human Development and Family Science in Ohio State's College of Human Ecology.
"The results offer hope for people who are working in this field," Serovich said. "We can tell HIV-positive men that others in their position rarely regret the fact that other people know their status."
Serovich has studied HIV disclosure since 1997. In previous studies, she found that HIV-positive men who disclose their condition are more likely to get necessary medical help, to find out about new clinical trials and therapies, and are more likely to get social support. Those who reveal their status to, and get support specifically from, family members are less likely to engage in risky sexual behaviors and are less likely to be depressed.
In the current study, Serovich, along with post-doctoral research fellow Tina Mason and doctoral students Paula Toviessi and Dianne Bautista, extensively interviewed 76 HIV-positive gay men once a year in 1998, 1999 and 2000, and asked them to fill out lengthy questionnaires every six months. As part of these inquiries, researchers asked participants about their social networks, including friends, family members, colleagues and acquaintances. During the final phase of the study, the men were asked whether each member of the social network they had previously revealed knew of their HIV status, whether they were told first-hand or heard second-hand, and whether the participant regretted that the person knew.
Overall, four out of five of the people in their social networks knew of their HIV status, and participants reported a very low incidence of regret. In fact, 63 percent reported no regret at all, and 75 percent reported feelings of regret of less than 7 percent of their social network. Out of a total of 1,397 social-network members who knew of the participants' HIV status, the participants regretted only 58 (4.2 percent) of those cases.
Interestingly, the highest incidences of regret were associated with disclosure to a parent or other family member, Serovich said. However, even then, out of 318 family members who knew, only 22 were associated with feelings of regret. "Disclosure may be difficult," Serovich said, "but the long-term consequences appear to be positive."
Serovich noted that it's possible that individuals would tell their HIV status only to "safe" people -- those who would most likely be supportive or at least neutral in their reaction. But there appeared to be no difference in feelings of regret on whether the members of the social network were told first-hand or heard second-hand. Also, it's possible that the benefits of disclosing the status -- from being relieved of the burden of living with a secret to experiencing assistance with support groups or medical care -- became apparent long after the disclosure took place.
Serovich also noted that the participants involved in the study constitute a small, predominantly Caucasian sample from an urban area. Results could be different in rural areas or among members of different races or ethnicities. She is currently conducting a similar study on HIV-positive women.
Serovich could find only one previously published study focusing on feelings of regret after disclosure of HIV status. Reported in 2003, it focused on women's feelings after disclosing their medical condition to their young children. No other studies have been published examining regret after disclosure of HIV status, Serovich said.
Serovich also has appointments with the Ohio Agricultural Research and Development Center and OSU Extension. This research was part of a larger study funded by a grant from National Institute of Mental Health.