‘THE Course’ helps keep HIV patients on meds
August 1, 1999 7 minutes read
THE Course’ helps keep HIV patients on meds
Washington, DC, clinic finds program works
Convincing HIV patients to stay on their protease inhibitors requires more than a little TLC. However, participants in a compliance program called the Tools for Health & Empower ment (THE) Course receive a healthy dose of self-esteem reinforcement with every lesson geared toward giving them skills to manage their disease successfully.
THE Course’s gentle touch seems to work. A recent study showed that participants at a six-month follow-up assessment had significantly fewer reported number of missed doses during the prior four weeks than a control group did.
The program is very effective, says Steve Geishecker, MSW, LICSW, a clinical social worker at Whitman-Walker Clinic in Washington, DC. The clinic has taught THE Course to clients twice and also continues to use some of the program’s modules for educational materials.
"The amount of information provided to instruct this program is very thorough, and it gave us a nice structure and framework in which to teach these different modules," Geishecker adds.
Building self-esteem and coping skills
Presented to patients in one to 12 module sessions, THE Course is designed to build HIV patients’ self-esteem and coping skills, as well as teach them about their disease and why medication adherence is crucial to their survival. The program was launched in early 1997 at 12 sites nationwide, and now has been implemented in 16 states and the District of Columbia. THE Course has had more than 1,000 participants and about 100 trainers.
"Knowledge doesn’t necessarily change behavior," says Maddy Rice, BSN, ACRN, associate manager of HIV/AIDS program development for Glaxo Wellcome Inc. in Research Triangle Park, NC. The pharmaceutical manufacturer has a separate care management division that developed THE Course for use with HIV patients who are at risk for discontinuing their medication treatment.
"So even though this is an educational program where people will improve in their knowledge base, we focus on behavioral objectives," Rice adds.
"We analyzed the data six months after intervention, and we’ve seen statistically significant increases in adherence to antiretroviral therapy, statistically significant increases in knowledge, and an improvement in patients’ quality of life," says Dana Bonas, MOH, outcomes manager for HIV/AIDS at Glaxo Wellcome’s care management division.
"What interested me in THE Course was the emphasis on behavior change and behavior management specifically related to medication compliance, increased quality of life, and the opportunity for participants to gain valuable innovative knowledge about how to better live with the virus," says Lisa Porto, MSW, LICSW, LCSW, LCSW-C, a behavioral therapist and the former clinical program manager for addiction treatment services at Whitman-Walker Clinic.
"I taught the original 10 modules twice," Porto says. "It brings people together with others who are HIV-positive, and they learn new information and skills in an environment that fosters learning."
During the first 10-module session, all 10 HIV-positive participants and their 10 caregivers completed the training. The clinic had required caregivers to attend as well, and that probably helped with attendance and compliance, Porto notes.
However, when the clinic used the course’s 10 modules a second time, enrolling 18 HIV-positive people without their caregivers, the results were less successful. Only 11 completed the sessions, Porto says.
Incentives improve program attendance
"The first time around, we had more incentives for attending, like medication materials, a free meal, gift certificates for grocery stores, movie tickets, and we’d help out with transportation and give each participant $10 for each session attended," Porto explains. "The second time around was a different story because the clinic offered it as a psycho-educational group program, and we had some incentives but not the cash incentives."
Still, both sessions were a success from Porto’s perspective because of the changes she saw in clients.
One man, for example, had been HIV-positive for three years, but he was opposed to taking medication despite his deteriorating health. "He had had bad experiences in the past and had seen a lot of friends die," Porto recalls. "He began the medication management module with a lot of resistance, but soon he began to open up and share his experiences."
Then, when other participants began to talk about medication side effects and food and drug interactions, the man began to learn different strategies for reducing medication problems. By the time the session ended, the man decided to try his medications again, and he has since successfully stuck with his medication regimen, Porto says.
Geishecker has another HIV-positive client who gained motivation to take better care of his health after attending THE Course. "After wards, his compliance with his treatment improved, his self-esteem improved, and one wonderful by-product is that his health has improved," Geishecker says.
THE Course initially focused on empowerment
When Glaxo Wellcome first began to develop the program in the mid-1990s, researchers weren’t focusing as much on medication adherence. Until the extensive use of protease inhibitors, HIV infection was not considered a chronic illness, Rice says.
"There was only one protease inhibitor approved at that time, and we weren’t thinking about adherence," she explains. "We were looking at behavior change theories and built our program on self-empowerment and self-management of the disease."
That’s why the initial studies of THE Course focus as much on participants’ changes in such indicators as "avoids negative coping," "empowerment," and "total coping," as they do on medication adherence.
THE Course’s focus is on giving HIV-positive individuals the skills they will need to cope with and successfully manage their disease. Trainers assist in these goals through positive reinforcement, building group camaraderie, and showing participants how to communicate with their health care providers. (See a description of THE Course’s 12 modules, p. 91.)
In the pilot study, only health care professionals were allowed to become trainers. But the trainer program later was opened to anyone who had a strong HIV knowledge base and some peer teaching skills, Rice says.
"We use adult learning principles and do not lecture participants," Rice says. "We tell trainers, Don’t be the expert — you have a group of adults with a large amount of experience, so use the session to be an open discussion.’"
Modules are designed to facilitate group discussions as well as role-playing and other activities. These different educational techniques help keep participants attentive and open to learning.
Glaxo Wellcome sells THE Course at cost to AIDS service organizations, public health clinics, and other organizations that work with HIV patients who are at risk for noncompliance with their medications. The program’s cost, which varies according to how many modules an organization purchases, ranges up to $3,000. Most of the organizations pay for THE Course out of Ryan White funding, says Monique Anderson, MBA, manager of HIV/AIDS program implementation for Glaxo Wellcome’s care management division.
Once an organization orders the program, Glaxo Wellcome care management staff work with the organization to recruit HIV patients, using referrals, posters, and other methods, Anderson says.
Then Glaxo Wellcome staff will spend two days training two to four trainers, who may include people who already work for the AIDS organization. Finally, the organization receives a trainer guide and module materials, including videos, 20 minutes of activities, and hands-on practice guides.
Program redesign accommodates illiteracy
The activities are designed to enable illiterate participants to learn through hands-on experiences. "At first, the program was very literacy-intensive, so if you couldn’t read, you’d have trouble," Anderson says. "But we redesigned it so you could participate if you were illiterate, and now it’s a flexible program that could meet the needs of anybody with HIV."
For example, one simple activity involves a little homework. The trainer asks participants to bring their medications to class and then teaches them how to put their pills into different compartments according to when they need to take the medication.
"They learn that certain medications need to be taken on an empty stomach and some with food, and why it’s important to take them like that," Rice says.
The program gives participants all the tools they need, including an HIV log book that they are encouraged to take home and use to keep track of their viral loads, CD4 cell counts, and other important information.
All of this patient education takes place in a group setting, partly because the group model gives patients certain benefits, such as having a safe place to discuss their emotions about having HIV.
Geishecker says he has continued to use various parts of THE Course as reference materials for clients and staff. These materials include a manual listing various medications and side effects and a book describing different opportunistic infections and their causes and warning signs.
Also, the clinic has held three workshops based on modules from the program. Because holding a 10- or 12-week program requires a large commitment of staff and client time, the Whitman-Walker Clinic has found that brief one-subject workshops focusing on medications or basic HIV education also can help clients learn about HIV and improve their compliance, Geishecker says.
Finally, THE Course gives trainers ideas for how to reinforce participants’ positive behavioral changes. "Positive reinforcement is constantly woven into everything, and not only from trainers, but also from other participants," Rice says.
Rewards may be as simple as a compliment or acknowledgement that a participant has reduced his or her viral load. The program offers ideas for actual prizes, such as coupons to stores or tickets to events, or certificates and buttons. For instance, some organizations have given out buttons that say, "I’m taking charge."
"If everyone has an undetectable viral load, then let’s applaud them," Rice adds. "There are a lot of rewards and gifts to make participants feel good, because even though they have this horrible illness, they’re doing something about it, and so they should get a pat on the back."
You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
- Award-winning Medical Content
- Latest Advances & Development in Medicine
- Unbiased Content