GRACE project seeks to relieve problems experienced by people with HIV

When Jerre Winfrey first began making visits to the homes of HIV-infected women as part of a project at the School of Nursing, she was very anxious about how she would be received. Once, she showed up unannounced at the home of a woman whose phone had been disconnected. Expecting to feel unwelcome, Winfrey was surprised when the woman greeted her as though she were a long-lost friend. As tears of joy streamed down her face, the woman said to Winfrey, "I can't believe that you've come to my house. I didn't think anybody cared about me."

Winfrey, a community outreach worker at the School of Nursing, no longer feels any hesitancy about making home visits. All of the women she has met with have expressed nothing but gratitude for her concern, she says.

Winfrey has been conducting home visits as part of a School of Nursing project called GRACE. Through a combination of community outreach and research, the project seeks to ease some of the problems experienced by people living with HIV. Winfrey's outreach is part of the second phase of the project, a study of the effectiveness of home visits on the ability of HIV-infected women to adhere to their complicated medication regimens.

From clinical trial to outreach program. GRACE was started three years ago as a clinical trial examining whether nursing interventions helped prevent vaginal yeast infections in women with HIV. Such infections are a common problem for these women, according to Ann Williams, a professor at the School of Nursing and the principal investigator for GRACE. She helped develop a comprehensive community outreach program to enroll in the study HIV-infected women from the Greater New Haven area, some of whom were not previously receiving routine medical care for the disease. GRACE staff members distributed information about the project at AIDS clinics, drug treatment programs and social service agencies, and advertised on billboards and community television stations. They eventually enrolled approximately 200 women in the study, which was funded by the National Institute for Nursing Research. The data from this part of the project is currently being analyzed.

Almost half of the women who took part in the first phase of the project are now participating in its second phase. Nursing school researchers hope that their work during this phase will ultimately help HIV-infected women meet the challenge of keeping to the prescribed schedules for taking the antiviral medications that help keep the disease in check -- a task that is difficult for many of the women in the study, say GRACE staff members.

"With a lot of the newer medications, the women have to take between 20 and 30 pills a day," explains Jane Burgess, the project director for GRACE and coordinator of the AIDS Education Training Center at the School of Nursing. "It takes over your life. Some medications have to be taken on an empty stomach, and some with food. There can be unpleasant side effects. It's a real challenge to get people to follow the regimen exactly."

But getting the demanding schedule just right is vital if the medications are to be effective in fighting the virus, notes Williams. "A lot of the medications are unforgiving; if you mess up, there's no way to make up for it," she says.

The home visits have revealed that, more often than not, the women in the study -- more than half of whom have a history of drug abuse -- are not taking their medications as directed. In some cases, the women have misunderstood their doctors' instructions, while in others, the women have been overwhelmed by the demanding regimen.

"In our interviews, we ask the women if their doctors took the time to explain everything to them, and the answer is almost always 'yes,'" says Burgess. "But then they go home and do something different from what is asked. It tells us that something is being lost in the translation."

Clearing confusion over doctors' instructions. Karina Danvers, a peer educator for GRACE, has discovered, in fact, that most of the women she visits think they are complying with their doctors' instructions about medications. "There can be a lot of confusion when a person has to take so many pills," she says. "Sometimes the women really aren't aware that they aren't doing it correctly."

The information gathered so far through community outreach has convinced Williams and Burgess that home visits are an effective way to follow up on HIV-infected patients.

"In the clinic setting, if I were to ask a patient if she were taking her medications as prescribed and she answered 'yes,' I would have no way of knowing if she wasn't," says Williams, who is also a nurse practitioner at the Yale AIDS Clinic. "I think these home visits help to bridge that gap. What we're learning from them serves as a reminder to us about how concrete we need to be when we are explaining medications, and other medical information, to our patients."

Devising strategies to aid patients. Once they've fully assessed the effectiveness of home visits, GRACE staff members hope to devise strategies that can help HIV-infected patients -- both women and men -- adhere to their medication regimens, according to Williams. What she and others in the GRACE project learn from the study will also be useful in other ways, she says.

"The AIDS epidemic, which has so much stress associated with it, has served to highlight issues in health care in a broader context," comments Williams. "I think what we are learning about how people cope with it is also relevant to our understanding about other chronic diseases and their management."

Winfrey and Danvers agree that for many of the women they visit, just knowing that there are people who are willing to take the time to assist them as they fight their battle against HIV is very meaningful.

"A lot of the women have very few people they can count on for support," says Winfrey, noting that some of the women name their young children as their closest sources of support in a questionnaire filled out by study participants. "Some of them are very isolated."

Without the kind of support that GRACE offers, many of the women would not have agreed to take part in the study, say the project's staff members.

"The reason they welcomed us is because they could sense that we genuinely cared about them," says Danvers. "That caring broke down a lot of barriers -- racial, cultural or language-related -- that otherwise might have prevented us from reaching them. It's meant a lot to the women we've met."

-- By Susan Gonzalez