ATP Series

The Problem with Compliance

Understanding why clients & caregivers don't follow recommendations

• By Laurie Watanabe
• Apr 01, 2021

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?”

This article originally appeared in the Mar/Apr 2021 issue of Mobility Management.