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."
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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