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Take a Team Approach Before Buying
No parent should try to choose a chair for their child all by themselves,” says Chris Seiberlich. “It’s not that they aren’t qualified to make decisions, but there are too many to be made by any one person. You have to think about a huge spectrum of issues.
Seiberlich is a physical therapist at Children’s Clinics for Rehabilitative Services in Tucson , Ariz. She and her partner, Kimberly Becerril, an occupational therapist, are discussing how to choose and properly fit a wheelchair.
“For instance,” Becerril says, “one of the most fundamental issues in choosing a chair is transportation. How will the chair be moved from home to school? If the answer is in the back of a station wagon, then a power chair is out. Even with a van, a power chair is going to need a ramp, because it’s too heavy to lift in. A lot of our kids would benefit from a power chair, but unless the transportation issue can be solved, it won’t be the right choice.”
Becerril knows a number of children who have power chairs who leave them at school, and use a manual chair at home.
“During the process of choosing a chair, we do a lot of transfer analysis,” Seiberlich says. “We want to know who’s going to be doing them (transfers), and we want the parents to demonstrate how they’re doing them. We can suggest ways to make it easier, such as use of a transfer board, or a Hoyer lift in appropriate situations.
“Most parents who’ve never seen a board are surprised by what a difference they can make,” she adds. “Still, if they are lifting the child and the chair several times a day, they are at a big risk for developing back problems. We had one mother with bruises all over her legs from constantly lifting the chair. Choosing a lighter chair, and one with some removable hardware, can make a big difference.”
Seiberlich and Becerril note that they can’t make all the decisions regarding the choice of a chair, either.
“We want the involvement of those people who see the child on a regular basis,” Becerril says.
“That means the parents, of course, because they know the child best. But we also want the school involved, especially the teacher or therapist who sees the child daily functioning outside the home. The issues at school can be quite different from those at home.”
Becerril says that they also want the chair supplier involved, to tell them what’s available. “We’ll describe the need, and the supplier can describe what they have to meet it. We can make mistakes if we do it ourselves, but if we have the whole team, we can cover all the bases.”
Lifestyle and Environment
What’s the right style of chair? While this will depend on individual needs and preferences, Becerril offers some important guidelines.
“Lots of kids want the sports frame look: It’s got a low profile and looks great. However, these frames are rigid: they can’t be folded, and they can’t grow with the child. So we wouldn’t recommend one of these at least until they are finished growing. Even then, the transportation issue remains a problem.”
Seiberlich adds, “We also would never recommend a chair without removable armrests or footrests. One of our clients who got a chair with rigid footrests went from independent transfers to requiring two people to move him. Luckily, we were able to recycle the chair to someone for whom it made more sense.”
When it’s time to choose individual components, Seiberlich and Becerril want to hear about lifestyle, terrain and environment.
“We can choose the wheels based on how rough the ground is around the home,” Seiberlich says. “Here in the desert, we recommend airless inserts. One good cactus spine and you’ve got a flat! Back East, we’ve got to consider the mud, the snow and the rain.”
“We also want to know about the inside of the home: Will an otherwise ideal chair have trouble getting through narrow doorways? If so, and there’s no money to redo the home, we’ve got to change our thinking,” Becerril says.
Social and educational factors come into play here as well. “Is the chair appropriate for the school setting?” Seiberlich says. “For instance, does the height of the chair put the child above or below classmates? Can we make small changes to get it looking more streamlined, if that’s what the child wants? If we can think of these things up front, it can save a lot of time and expense later on.”
Growing With the Child
Both the X-shaped cross brace (black) and the front frame sections (blue) can be replaced as a child grows.
And expense is a huge issue: A manual wheelchair with custom seating can cost $5,000, while a power chair might be four times that. A really good cushion alone might be $300 or $400. Becerril notes that most of this is covered by insurance for many families. “And if you buy the right kind of chair, one that can grow with the child, that investment can last 10 or 12 years. This is the child’s mobility, and his independence. It’s important to get it right.”
What does it mean for a chair to grow with the child? The idea may be new to those who think of the clunky “one-size-fits-all” sling back chairs as the only type there is. Most chairs today can be widened by changing the cross brace supports underneath, and lengthened by replacing the front frame sections that hold the leg supports.
“With this system, we can take a child from a very young age through the teen-age years with the same chair. We can grow a chair from a seat that measures 10 inches by 10 inches to one that is 18 by 18. While there is some expense along the way, it’s still cheaper than replacing the chair. And the frames are warranted for life,” Becerril says. “Make sure you choose a color you’re not going to be sick of in a few years!”
Seating and Support
One of the most critical decisions regarding chair options, and one for which professional input is most crucial, is the choice of a seating cushion.
“The basis for good seating posture starts in the pelvis,” Seiberlich says. “We’re looking to distribute the weight over as big an area as possible, for support, for comfort and to prevent skin breakdown.”
She notes that pressure sores, or decubitis, are a critical concern with prolonged seating. For those who aren’t in the wheelchair for many hours at a time, a flat seat may be appropriate. For more prolonged use, or when stability in the chair becomes an issue, a high-quality foam cushion becomes preferable. Other alternatives include air-filled or gel-filled cushions.
“Children with scoliosis (curvature of the spine), whether or not it has been stabilized with spinal fusion, may have some left-right tilt in the pelvis,” Seiberlich says. “In such cases, we can use the seating system to minimize the effects of the tilt. Some of the kids are still flexible, so by raising the lower side, we may be able to level out the pelvis. On the other hand, if the tilt is fixed, we’ll support the higher side, so it takes up some of the weight. Distributing that weight is the key.”
Scoliosis also figures into the choice of the back. “We can’t always use a standard flat back or sling back. We may need a molded back to match up to the spinal curvature. Again, we’re trying to get more surface contact to lessen pressure,” Seiberlich says.
Lateral supports may be an important element as well. “If the child does not have the trunk strength to maintain their upright posture, we need to do it with laterals. Even with spinal fusion, they may need them to help prevent tipping.”
Becerril notes that a “tilt-in-space” chair may be appropriate for someone with very little trunk strength. This type of chair maintains the sitting posture, but tilts back to relieve some of the anti-gravity work for a while, combating fatigue. Recliner chairs, which allow a prone position, are used more often for those unable to tolerate the normal angles of seated posture.
Once the chair has been ordered, Becerril says, expect a couple months delay before it arrives. “Authorization takes time, and typically we’re dealing with several different companies, and it’s a custom product. Nothing related to wheelchairs ever happens quickly.”
Once the chair arrives, the hands-on fitting process may take two to three hours, Becerril explains. “Things come up you can’t foresee. Also, we want to show parents the signs of an improper fit. It’s not something you do once and it’s done: Kids grow fast, and their condition can change fast, so you need to monitor the fit constantly.”
Seiberlich adds, “We always want parents to be checking for redness, because this indicates too much pressure. They need to check the buttocks, the back, the feet, and the back of the legs. Anywhere the chair is making contact, there’s the potential for too much pressure.”
She offers an important rule of thumb: “There should be no more than three fingers worth of space between the front of the seat and the back of the legs. With any more than this, the seat is not providing enough thigh support, and the chair may dig into the legs. It also makes sitting more difficult, as you don’t get the same amount of surface holding you up. Also, you need to make sure that the footrests are low enough to get full contact for the whole thigh.” There should be at least half an inch between the hips and the side of the chair. The laterals shouldn’t be too tight, and shouldn’t dig into the armpits.
“Parents can make these adjustments, if they know what to look for,” Seiberlich says. “But we like to see the child in his chair at least once a year, especially if he’s still growing. And anytime they think there’s a problem they can’t fix, we want them to come in.”
In addition to monitoring the fit of the chair, Seiberlich stresses the importance of regular maintenance. “The chair should be washed regularly, using a spray cleaner. Most cushions are washable, or have washable covers. A thorough inspection of the whole chair once a week is a good idea: Check the brakes, look for loose hardware, and check the tires and seat.”
Becerril points out that change in temperature can change the inflation pressure of tires and air-filled or gel-filled seats. Simple problems can easily be fixed at home. More involved ones can be taken care of by the vendor, who will almost always do maintenance for free.
Finally, Seiberlich returns to the transportation issue to stress an important safety rule.
“Chairs are generally not crash-tested, and the pelvic strap that keeps you in the seat is not as strong as a seat belt. We recommend that a child be on the car seat, strapped in using the car’s seat and shoulder belts.” If needed for lateral support, a chest harness can be used as well.