OBEY: ISTOCKPHOTO.COM/MICICJ
Compliance is key to optimal outcomes. It is also one of Complex
Rehab’s greatest challenges, because who likes fingers being pointed
at them? Every clinician, ATP supplier, and funding specialist has
stories of a seating system or wheelchair that was perfectly dialed in,
custom built or fitted, fought for via funding channels, delivered…
and then rarely used, perhaps brought out only for clinic appointments.
Or the wheelchair is used, but the tilt and recline remain idle.
It’s a complex issue that starts, perhaps, with the term itself.
Why Words Matter
Emma Friesen, Ph.D., Clinical Director for Raz Design Inc., has
closely studied the concept of compliance.
“A lot of my reading and understanding on this is as a result of
being exposed to the adherence-related sciences, which I would
say are dominated by medication-related adherence, because that
is a global issue of concern,” Friesen said. “There’s a whole lot, at
least 40 years of worldwide research, on these topics. I got exposed
to that when I was working at a pharmaceutical company.”
And compliance, she noted, is a term on its way out.
“The term compliance has largely been deprecated,” Friesen
explained. “It’s not a consensus term anymore, and that started
in the early 2000s. The reason was the common definition of
compliance: the extent to which the patient’s or person’s behavior
matches the prescribed recommendations. Back in 2000, there
was a report written by the World Health Organization, and the
concern is that the term implies a lack of involvement by the
patient or person in decision making about their treatments.”
Compliance’s passivity, Friesen said, reflects “a very medical
model of healthcare: You had a healthcare practitioner doing
an assessment, deciding what the patient needed, and then
expecting the person would go away and comply. There was no
sense that the person was agreeing with the recommendation or
that there had been any real discussion or ownership or agency.”
A Good Fit for Complex Rehab
Patients who don’t cooperate or comply are hit with another label:
non-compliant. “Even in the early 2000s, that had become a very
negative term, a judgmental term, one that was placing blame on the patient for their behaviors in a very simplistic way and without
acknowledging the very real complexities around adherence-related
behaviors,” Friesen said. “So from the early 2000s, there was
a lot of work done to gain consensus around this term of adherence
and this idea of adherence to reflect a more holistic approach,
one where there is agreement, there is dialog between an HCP
[healthcare provider] and a person or patient around a particular
treatment or intervention. It has become a consensus term. The
World Health Organization, movements around the world, policy
makers, care practitioners, manufacturers, researchers, patient
organizations, patient advocacy organizations are all very much on
board with this idea of adherence and adherence-related sciences
and the management of adherence.”
The principles of adherence are an especially good fit for this
industry, Friesen said. “In seating and mobility, we strive to be
user centered. We strive to be patient led, and to me it would
make sense then that we would embrace this terminology and
the evidence from adherence-related sciences. Because it is
fundamentally looking at the issue in a way we would want to
look at it, which is putting the patient at the center and understanding
their needs, wants, beliefs, and realities.”
Where the compliance model identifies healthcare professionals
as authoritarians, adherence contends that clients and
caregivers are also subject matter experts.
“We’re recognizing that the person and their circle of support
have expertise in their own lived experience of their condition,”
Friesen said. “All of those can potentially impact adherence. You
can be intentional in your adherence or non-adherence, or you
can also be unintentional, like ‘I forgot.’ The conversation allows
us to take into account all these very important person-centered factors that are going to impact someone’s use of their equipment.
It’s all relevant to whether someone is then able to use the equipment
as we intended. Everyone’s an important stakeholder.”
Managing Adherence & Supporting Clients
“Managing adherence requires monitoring and measurement,”
Friesen added. “One of the things that strikes me as I read published
papers about this is that we actually don’t define what the recommended
behavior is. If you think about medication, you’re told
about what dose to take, how many times a day, until the packet
runs out. You’re given very clear instructions. In a written prescription,
it usually is also printed in some way on the packaging. It’s put
in multiple places so you’re informed of the recommended use.
“In seating and mobility, I don’t think we give that level of
information to people and their circle of support. We say this is
what we’re recommending and have that discussion, but I don’t
know that we communicate that always in a very clear way, that
this is what the recommendation actually is. So there’s a lot of
potential for it to be misunderstood, and it also means it’s almost
impossible to measure because we’re not using any objective
standard to measure it.”
In the end, factors such as client/caregiver education are critical
to adherence, because how consumers and families feel about
their seating and wheelchairs has a domino effect.
“In terms of psychology, there is a big body of evidence around
how a person’s beliefs about their treatment, be it a medication or
an intervention, affect what they do,” Friesen said. “Also, people’s
beliefs about their illness or condition impacts what they choose
to do. But in terms of adherence-related sciences, we’ve defined
adherence to medication as a process of taking the medication
as recommended, understanding that there’s been conversation,
and the person has had agency in the decision-making process.
There’s also management of adherence, and that’s the piece of
the puzzle that talks about monitoring of adherence and also
supporting people with adherence-related behaviors.”
While compliance is rather a one-way street — healthcare
professionals give instructions, which clients and caregivers obey
or ignore — adherence suggests much more active involvement
and responsibility on everyone’s part.
“If a person and their circle of support is unable to use the
equipment as intended, then it possibly wasn’t the optimal
solution to begin with,” Friesen said. “This is why I get concerned
when we say ‘Oh, they were non-compliant.’ Was that piece of
equipment truly matched to that person’s life, environment, care
regimes, all the other issues that come into play? If it wasn’t, was
it the optimal solution?”
