When it comes to HIV education, images of older adults are sorely lacking. Take a look at any of the ads for HIV medications, even those aimed at people who have been using the drugs for some time, and you'll see attractive young men or women.
Community PROMISE (Peers Reaching Out and Modeling Intervention Strategies) is an intervention based on several behavioral change models that targets a large number of communities, including men and women at risk, homeless individuals at risk, young MSM, substance users, etc. ACRIA's adaptation of the program is aimed at older adults who are living with HIV or who are at risk. Our target populations are MSM, women, transgender individuals, people of color, and Spanish-speaking communities.
The goal is to reach them through the actual stories of people they can identify with. We speak to issues that are specific to older adults: ageism, loneliness, the need for intimacy, higher rates of depression, and so forth.
The "role model" stories come from over 100 interviews completed over two years. We chose stories that had common issues and used characters that would have the greatest community impact. The ultimate goal is to create behavior change.
The process of gathering the stories has been eye-opening, especially the ease with which older adults speak about their intimate sexual behaviors. It's hard for anyone to speak about their sexual risk, but especially so for a widow who had only one sex partner for 40 years and now finds herself playing the dating game. One woman commented, "I never had any man but my husband. Now I'm 65, met someone at the senior center, and we're having sex! I don't know anything about his sexual history and we never even talked about HIV before having sex."
It's also a challenge talking to someone who never identified as a gay or bisexual man, and who recently tested positive for HIV. It's about creating a comfort level and finding an appropriate space. The interview is recorded, which alone creates discomfort. We do allow anonymity, but many interviewees felt comfortable enough to allow their real first names to be used -- they want to be able to identify themselves if they see the story in public.
Many older adults with HIV said it was because of loneliness that they engaged in sexual activity without disclosing their HIV status,. Those who were HIV negative or untested also had high-risk sex out of a need for intimacy. This occurred regardless of whether the initial intention was to have sex. And many didn't know how to use a condom or simply didn't have one. One man told us, "There were other men in the park who were willing to have sex with me without using a condom. Look at me -- I'm 61 and if I can have sex or feel loved, even for a few moments, then I won't demand a condom."
Most older adults said that to reach people in their age group we had to tell stories about people who looked like them and had similar sex and intimacy issues. They were tired of prevention messages aimed only at young adults. This was especially true of older adults who never thought of themselves as being at risk, mostly because the images used in prevention messages "never spoke to them."
In focus groups before we began the interviews, participants said things like, "You need to make the HIV test normal, an everyday test, so that when we have one done it's as if we're just peeing in a cup."
The final key to the process is finding the right people to distribute the stories on palm cards to the population we are targeting. Fortunately, our peer educators come directly from the people we interviewed. They've been able to arrange HIV tests for over 500 older adults in a six-month period. Part of that success came from presenting an HIV test as just one more test, much like a prostate test, breast exam, or cholesterol test. But in the end it was about a group of older adults who came together, learned about HIV and sexual risk, and left the program with the feeling that they can talk about sex to their own service providers and to their peers.
Luis Scaccabarrozzi is Director of the HIV Health Literacy Program at ACRIA.