Both the 75 patients
interviewed and the 24 providers generally liked the scheme. Patients attended appointments more
regularly, providers reported increased opportunities for better preventive
care, and both reported improved staff-patient relationships.
One provider
said:
It brought a lot of
awareness to the patients. A lot of the patients that were not coming in for
their visits were more frequent to come now, the two years that we did the
study. They were able to get the idea of why they have to come at least more
times out of the year to the clinic. Even if they’re suppressed they should
still come to the clinic.
A patient said:
That was part of getting the
card: that they take your blood; they check your weight; they check how you’re
doing. And, to me, it was good that, you know, we got to know each other
better.
The financial incentive
did not increase participant’s knowledge about viral load in the wider study.
In the qualitative substudy, half the interviewees had an incorrect
understanding of what viral load was. Understanding viral load appears to be helpful as virological failure rates were only 5% in those with a correct
understanding versus 10% with an incorrect one, though this may not reflect the entire population who received financial incentives in HPTN 065.
The main
confusion was between viral load and CD4 count, and as a result, some patients
thought that one’s viral load should be kept high and that ‘undetectable’ was
bad:
I think there’s a range, and
I’m not sure of the numbers. I think if your viral load is under ... I may be
wrong ... if it’s under 500, you’re in trouble. And you want to keep it above
that.
The researchers
comment that despite these misunderstandings, three-quarters of participants
understood that the reason to take ART regularly was to maintain a ‘good’ viral
load, and that this may have been sufficient incentive for good adherence.
Clinic staff, however,
were unaware of how inaccurate their patients’ understanding of viral load was,
and thought they were all fully informed:
Everybody understood that if
they don’t take their meds well they’re running significant risks of their
viral load being high and not getting the card…I don’t know that anybody didn’t
understand that.
The study
created considerable logistical challenges for providers, especially in some
clinics.
Participants in
the study used their cards to meet real financial needs rather than luxuries –
including paying for their own medicine. One participant, a 50-year-old black
woman, said:
It helped me pay for my
medicine. Then I got a few little personal things that females should have. Not
to go in detail... It [also] helped me buy a little groceries, buy some eggs
and stuff like that.
While a clinic
staff member said:
About 80 percent of my
patients live below the federal poverty line and [the gift cards] met a real
need [for] them.
Inevitably, when
poverty and money are together, tension was also sometimes created. In
particular, some patients protested when they missed appointments or their
viral load was detectable. Some started to regard the cards as an entitlement
rather than a reward. One staff member said:
People acted like this is
their pay check – like they worked for hours to get a gift card here. Like, ‘I
deserve it! I took my medication.’ And sometimes I had to step back and say
this is for your health; you know that, right?
On the whole,
though, the card scheme improved staff-patient relationships. Furthermore,
being offered a tangible reward also improved participants’ self-esteem: people
who were often jobless and without the experience of being able to do anything
to improve their lot in life associated clinic attendance with self-improvement
in other areas. One woman said:
Yeah, it made me feel
important with myself instead of being depressed with HIV. I bought a present
for myself.... You’re like, ‘I got something, someone offered me something and
I can do something for myself.
Staff also said
it greatly improved the atmosphere at their clinic and the work environment in
general. One clinic director said:
There was a tremendous
emotional positivity in the clinic. I think it’s improved the dynamic of my
staff in the clinic. I think we felt empowered to do something beyond of what
we do already.
While a nurse
commented that the scheme helped her “get to know certain patients on a
different level.”