Connecticut center uses home visits to improve adherence
They used educational model of 'mirroring'
Yale University researchers conducted a four-year adherence study in which the intervention included having a registered nurse and peer educator sit down with HIV-infected clients at their kitchen tables each week to discuss medication adherence challenges.
The findings are yet unpublished, but the anecdotal evidence was very positive, says Karina A. Danvers, MA, director of the Connecticut AIDS Education and Training Center, Yale School of Nursing, Yale University, in New Haven, CT. Danvers was scheduled to speak about the intervention at the 2nd International Conference on HIV Treatment Adherence, held March 28-30, 2007, in Jersey City, NJ.
"It's made a huge difference in some patients' lives," Danvers says.
"We were able to go outside the clinic walls and see a side of adherence that is not acknowledged in the clinic setting," she adds. "We saw how everything surrounding the patients and their environment both positively and negatively impacted adherence, and that's rarely discussed in the clinic setting."
The study enrolled 100 HIV-positive patients in Connecticut, and 50 of the patients received adherence support in the form of a quarterly scheduled interview and MEMCAPS. The intervention group of 50 patients received the interview, MEMCAPS, and a home visit by the RN and peer educator, Danvers explains.
Home visits were conducted weekly for three months, followed by biweekly visits for another three months, and, then, monthly home visits for the last six months, she says.
The peer educators involved in the study included one person who was HIV infected and another person who was an injection drug user who had been believed HIV infected until a second HIV test came back negative, Danvers notes.
The idea was to have the peer educators fit in with the community of patients in which they would be making home visits.
"One of our biggest modes of transmission in Connecticut is injection drug use [IDU]," she says. "Over 50 percent of patients in the study had abused substances."
The weekly home visits at the beginning of the study proved to be essential for forming relationships between the patients and the adherence educators, Danvers says.
"Without the three months intense relationship, I'm not sure the other months would have been as successful as they were," she says.
When the team visited a home where someone was not present, they mailed the patient a card to say, 'We missed you. Hope you are doing well,' Danvers says.
The cards were approved by the patients prior to their enrollment.
As the visits progressed, the RNs and peer educators adapted and changed adherence tactics, Danvers notes.
"Our goal was medication adherence, but just talking about HIV and medications wouldn't do the trick," she says. "So we let participants set the tone for the visit."
They based their tactics on the educational model developed by the deceased Brazilian educator Paulo Freire, who said that educators need to use what a student is giving them and then mirror it back to the student before the student will take action.
"So you hear what they have to say and mirror it back with an action, and, then, hopefully the person will take the action," Danvers explains.
For example, during a visit, the peer educator might ask, "What's new? What's going on in your week?"
"They might be, 'I was very upset about my son being in jail, so I didn't take my meds,'" Danvers says. "So we'd say, 'It wasn't that you didn't want to take your medications, but the emotions were too much to handle along with the medication. What do you think about the consequences of those actions?'"
And the patient then might respond, 'I really should take my meds, because if I want to be around to help my son, I need to take my meds,' Danvers adds.
Although the visits were laden with personal crises and problems, all of which impacted medication adherence, they were structured in a way that did not allow them to lapse into counseling sessions, Danvers says.
"They knew this wasn't a counseling session and we weren't friends," she says. "They knew we were there for a purpose."
Another adaptation that occurred during the visits was that the home visit team drew informal cartoons that echoed common situations in which a person might not adhere to his or her medication regimen.
For instance, one cartoon showed four women sitting around the kitchen table, and one is HIV positive, while the others are not infected. The cartoon bubble above the head of the HIV-positive woman reads, 'Oh my goodness, it's 3 p.m., and I should take my medication, but I don't want them to know,' Danvers describes.
"Then we'd show women the cartoon, and they'd say, 'Yes, I've been in that situation so many times, and I needed to take my meds but didn't want to take a chance,'" Danvers recalls.
Another cartoon showed a man playing pool, and he doesn't want to stop his game to take his medication, she says.
Another one of Freire's theories is that people are more comfortable when educators create a community, and Danvers says the cartoons helped to create this invisible community.
"Although none of the patients met each other, the cartoon weaved a community of people for them," Danvers says. "Someone would look at one of the cartoons and say, 'This has happened to me,' and then we'd say, 'We visited three other people today, and they had similar experiences, and this is how they handled it.'"
This created an invisible community of people who had experienced similar stigma, concerns, and obstacles, Danvers says.
"This wasn't something we planned on doing, but it grew out of the visits," Danvers says. "We just thought, 'How can we link the people to each other without having to force them to be in the same room, which we knew was not going to happen?'"
Even forming support groups is difficult because people, feeling stigmatized, find it difficult to enter a group in which they do not know who they'll encounter, she notes.
The home visit team also brought food and beverages to each home visited. They started this after finding that each of the six or more people they would visit in one day offered them food and beverages, and they found it uncomfortable to turn them down, Danvers says.
"So we decided to bring food as a token and take pressure off of people to give us food, and it took the pressure off of us to say, 'Yes' to the food," she adds.
The intervention was expensive, but worth the effort, Danvers says.
"The home visits did work because we were not in the clinic setting and were able to take into account what was going on in people's lives," she says. "It helped patients navigate the adherence process, which doesn't happen in the clinic."