Why Clients Don’t Comply: Case Studies

If you recommend or supply complex rehab equipment, you probably have at least a few “You won’t believe this!” stories of clients who did not comply — in other words, did not follow your seating & mobility recommendations. Maybe your recommendations involved a certain type of equipment or its function, such as how and when to use elevating legrests. Maybe it involved a related therapeutic regimen, such as standing or how often to perform pressure relief.

Mobility Management asked rehab professionals to share their compliance observations with us, in hopes that the solutions could help other seating & mobility specialists grappling with similar issues. We’ll continue to run compliance-related stories in our Clinically Speaking column throughout the year; send your observations to Mobility Management at lwatanabe@1105media.com. Stephanie Tanguay, clinical educational specialist at Motion Concepts and a former rehab technology supplier, gives her observations here, followed by stories from other rehab professionals.    — Ed.

I think this is a great subject to explore. My 13 years in a rehabilitation hospital were filled with instances of frustration — consumers who were not interested with what I knew was the right equipment of therapeutic intervention. I think of the numerous paraplegics I worked with who developed serious (and at times life-ending) pressure sores. This was something I did not understand when I started working with spinal cord injuries (SCI) because it seemed so simple to my inexperienced therapist mentality — They can do push-up pressure relief, so why don’t they do it and avoid getting these awful pressure sores?
I think the clinical approach cannot be so simplistic — where we look to assign responsibility or blame to a person or event or cause. I don’t think that the move to provide health-care services as a service model structure that divides components of care or skill sets by discipline helps the consumers we work with.

How Consistency Can Encourage Compliance
I know I digress here, but for example: If a person with a spinal cord injury in a rehab program needs to work on transfers, I don’t think it should just be the OT or the PT who works on it. I think all health-care persons who work with them should work on that functional application with consistent technique. So for instance, a client, if he or she is using a sliding board technique, should use the same technique each and every time he or she needs to transfer, all day. The unit staff shouldn’t use a dependent lift technique because they’re in a hurry or it’s easier or quicker…not if it doesn’t help the client master the skill of transferring.

If a consumer needs to learn about pressure sore prevention, the only health-care professional they hear that information from cannot be a nurse. The entire staff — OTs, PTs and recreation therapists — has to know and reinforce that information. So when the rec therapy staff takes that consumer on a community trip or is having a clinic activity, they should be asking, “When was the last time you performed pressure relief? What technique do you use? Do you need any assistance?”

Explaining the Reasons Behind the Recommendations
At the International Seating Symposium, I briefly spoke about consumers who do not use the technology we provide. I have seen this many times, and for a variety of reasons. Tilt-in-space chairs do a good job at shifting weight, but we don’t always do a good job at explaining why we’re ordering/recommending/prescribing something.

I found many consumers who did not use the full amount of tilt that their power seating system had to offer. Some people were afraid to tilt back because it felt unsafe — like they might tip over. Some people found it disruptive to their schedules/activities — they felt conspicuous performing pressure relief during class, in the middle of a restaurant, during work.

I have a friend (and former client from my RTS days) who has a C6 level spinal cord injury. He’s very smart and has been in a chair for more than 15 years. He completed law school and passed his bar exam a couple of years ago… and after working less than two years, he had a surgical closure of a pressure sore and has spent almost a year and a half out of work.

When we spoke about the issue with the wound and I questioned him about pressure relief, he simply told me, “I can’t do that in court in the middle of proceedings in front of a judge.” He has a power chair with tilt and recline! I made sure he had the technology… but it didn’t prevent the problem.

I discovered that he rarely performs full pressure relief. So I used pressure mapping as a form of instructional biofeedback tool to allow him to see the pressure at the seat interface. I often found this to be an enlightening tool for consumers. Does it make sense that we expect the insensate consumer to be constantly vigilant of their skin? Pressure mapping can provide a visual impression of what is happening, what is effective, how much the consumer needs to tilt, recline, lean, etc., to relieve pressure.

Information Can Empower
Here’s another scenario: Intermittent catheterization is much more difficult for women than for men. I had several female clients who would limit their fluid intake if they were going to be out so they would not have to cath for a few extra hours. This is obviously not a healthy solution, but I can certainly understand how individuals would come to this conclusion as a matter of convenience. I have known a lot of women who chose to use indwelling catheters because it was easier than trying to cath every four or six hours.

Everyone is different and requires enough information to help them make decisions. I have found that the amount of time I take to explain the what and the why often made a significant difference in the consumer’s experience with equipment and its use.

One of the most severely involved pressure sore clients I ever worked with required a drastic intervention: a full body-jacket style orthosis. The PT and I spent a lot of time explaining the reasons we were recommending this and what was involved for him: that he would have to wear this orthosis whenever he was going to be in his wheelchair — every day, all day for the rest of his life, including in the summer with 98-degree temps, etc.

It was a decision that required a lot of information for the consumer, and there was no way to guarantee compliance. But the outcome was 100-percent successful. About six years later, I ran into him and he was still using the orthosis and had been pressure-sore free for that entire period of time. He said, “If it wasn’t for you, I’d be dead now.” That sounds overly dramatic, but was actually a very accurate statement.

When Seeing Is Believing
I think that when we evaluate consumers for seating and positioning equipment, we need to be sure to explain everything we’re seeing and trying.

I always had a large mirror in clinic that we could roll in front of the clients so they could look at how they were sitting. If they had a scoliosis, we could point out the asymmetries, and if it was flexible, we could show that to them also. If you’re going to ask someone to sit all day in a system with pads on each side of their trunk, I think it helps if they understand what those supports are for and how they’re supposed to help.
So, my big word is education — we need to educate the consumers of technology about what we’re trying to achieve and make sure they are a vested partner in the process. We need to explain our perspective, and we need to listen to the consumer and consider their concerns. Technology is only effective if it is used, and taking more time at the front end might help prevent the abandonment of that technology. — Stephanie Tanguay

Compliance Case Study:
Taking a More Gradual Approach
Name: Dave Hintzman, President
Company: Bodypoint
General description of client: 55-year-old, male, cerebral palsy.
Compliance challenge: Did not use and did not want footplates on his wheelchair.
Reason for non-compliance: His explanation was that he used his extended feet to feel obstacles while driving his power chair. He said he did not like feeling restricted and that he didn’t think he looked good with footplates.
How we worked to solve this: We listened to his needs and introduced one footplate at a time. We showed him how to drive his power chair and sense obstacles by looking where he was going and paying closer attention. We also modified his controls so that he should steer and drive the chair better.
What we learned: Seating in his case was a progressive process that was not to be rushed. It is important to spend time listening to the client if you want them to use your recommendation.

Compliance Case Study:
Pediatric Challenges & Complexities
Name: Mary Miles, PT
Company: White Bear Lake School District PT, White Bear Lake, Minn.
General description of clients: Early childhood through 18 years, male and female, multiple types of conditions.
There can be many reasons for non-compliance in pediatrics. Some of the reasons I have seen in practice have included:
•    The parents and child were included in the process of choosing equipment, but were their concerns taken into account? If they were not 100 percent behind wanting the equipment, then the carryover isn’t going to be as great.
• Knowledge. Do the parents or caregivers understand the reason behind why we want them to use the equipment? Do they fully understand the consequences of not following through?
•    Is the equipment comfortable? Does it fit them correctly?
•    Is it easy to use for the parent and/or client? Do they feel comfortable using it? Did they receive enough training to use it?
•    Does the parent perceive it as hurting their child? Is the child being manipulative to get out of using the equipment? I have seen a combination of both occur recently with a child and ended up with the child not being allowed to use a stander for three months, and consequently losing range of motion.

Compliance Case Study:
Seeing the Situation Through Others’ Eyes
Name: Andy Hicks, Eastern Regional Manager
Company: Altimate Medical, Inc.
General description of client: T10 to T12 SCI, male, 42 years, injured at age 18; renowned neuroscientist.
This is a colleague of my wife’s and a good friend. As long as I had known him, he’d been sitting very poorly, and his old wheelchair was the primary cause of his bad posture. Often when I saw him, I would tell him that he needed a new chair, and I gave him names of ATS people that could measure him for a better wheelchair.

This went on for years until I met him at a conference. I felt that the friendly recommendations were not working, so I made my message strong. In so many words, I told him that he was looking and becoming more handicapped because of his poor posture and that he should do something about it. He was offended by my comments that he looked handicapped because he is a handsome, independent individual. This put a strain on our friendship, but he did get a new wheelchair. I think he did not see himself as others did and did not understand how severe the problem was.

There are many reasons clients are not compliant, but what it comes down to is they have to fully believe in the reason to do it. It is going to cost them something (money, energy, time or simple change) to comply with your recommendations. So they have to believe that the recommendation will be more rewarding than the cost.

This article originally appeared in the May 2008 issue of Mobility Management.

In Support of Upper-Extremity Positioning