Triple Diagnosis: Surmounting the Treatment Challenge (Part 2)

Consumer Involvement

To make the study as reality-based as possible, consumers of treatment services play a vital and essential role. Each study site has a consumer advisory board comprised of people living with HIV/AIDS and mental and addictive disorders. The advisory boards help develop effective local strategies for recruiting and retaining participants and assist project staff with program design and participant feedback. One member from each local board also serves as a consumer representative to the study's multisite consumer workgroup of the steering committee.

"This emphasis on consumer involvement is both novel and effective," said Phil Meyer, L.C.S.W., a Los Angeles consultant living with HIV who also serves as the consumer representative on the study's steering committee. Mr. Meyer uses monthly conference calls with the local consumer representatives to gather their suggestions and concerns, and then shares these with the steering committee in his role as one of 11 voting members.

"The consumers have had a real impact," said Mr. Meyer. For example, when the steering committee was developing the intake procedures to determine study participants' baseline characteristics, the consumer representatives took a draft version of the battery of tests. The consumers' comments—"Pages and pages and pages of questions!"—led the steering committee to reshape the final form of the baseline protocol significantly. The steering committee reduced the length of the assessment, removed certain measures, shuffled others, and developed an administrative procedure that was much less stressful.

Now the consumers are focusing on publishing articles in journals and magazines. One of their main goals is to highlight the importance of consumer involvement as vital to the success of the study.

"Becoming an advocate is the next phase of treatment for people," Mr. Meyer explained. "What we're learning is that people who are actively in recovery have a real desire to give back to the community."

(l. to r.) Maxine, Carita, and Dr. Marcia Andersen, all of the Well-Being Institute, Inc., in Detroit, MI

Maxine, the Well-Being Institute's representative, is a perfect example. Before she participated in the pilot program designed to test the Institute's intervention, she was in bad shape. Although she worked as a nurse, she drank heavily and secretly smoked crack cocaine. And despite having been diagnosed with HIV, she wasn't going to a doctor or taking medication.

"I thought, ‘Oh, well, I'm dying anyway, so forget it,' " she explained. "But the Well-Being program was a real stepping stone for me."

Now 59 years old with an undetectable viral load, Maxine has a new career as an activist. Along with other members of her consumer advisory board, she talks to current participants about how well the program is working and shares their suggestions with the Well-Being Institute staff. She also speaks out at conferences and teaches others how to advocate for themselves. "People are really listening," she said.

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One Site's Intervention

The Well-Being Institute's nurse-based intervention targets women with HIV who haven't shown up for appointments at an HIV clinic, sometimes for years. Armed with lists of these women, a friendly outreach "hostess," a nurse, and a driver locate the women.

Whether the women are randomly assigned to the intervention or control arm, participation in the actual study begins with a warm welcome from the hostess. For those assigned to the intervention arm, the process continues with a "bonding" session with a nurse and an initial assessment. The nurse then accompanies the woman to consultations with treatment providers for HIV/AIDS, mental health, and substance abuse who offer recommendations for care. Drawing on these recommendations and the patient's own concerns, the nurse develops an integrated treatment plan and negotiates its acceptance by all involved. The institute then does whatever it takes to help the women adhere to those plans, such as providing transportation and accompaniment to appointments or offering individual and group counseling. Re-assessments at 3-month intervals help fine-tune the participants' treatment goals and provide needed information for the multisite study.

For study participants such as Carita, the Well-Being Institute's intensive, one-on-one approach is working wonders. Before the study began, Carita was just too emotionally exhausted to endure the three bus rides it took to get to her HIV clinic. "When you've been diagnosed as long as I have, you just get tired," she explained. Now the institute transports her to appointments, helps her keep track of the medication she takes for HIV and depression, and provides a variety of vouchers.

"Many of the women we serve live near a major medical center," said Dr. Andersen. "They live in the shadow of the castle, but they can't get over the castle walls." With help from the Well-Being Institute, they may now have the key.

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