The compliance issue is a dilemma that faces all practitioners, but
especially those who have a pediatric patient population. “The orthosis is
not going to work when it is left in the closet” is a phrase probably used
in your dialogue with patients’ families.
There are some solutions you can use to empower your patients and their
families. With some new tactics, you can give them the tools for success.
Enforcement
Preschoolers are naturally the easiest population to work with in terms
of compliance because the parents are usually in charge, though that is
debatable at times. Since all toddlers share a natural Houdini-like tendency to
wriggle out of things, the childproof strap is a quick fix to outsmart them.
The Velcro hook and pile tabs extend past the rivet requiring two hands to
release the hold. This trick can also be used for older patients who have
cognitive challenges.
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| In a Shriners Hospital Tampa study, children who wore orthoses with patterns and colors exhibited better self-images. |
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| Images: Janet Marshall |
Children with
spina bifida have a direct need for bracing as they commonly
have flaccid lower extremities that will not allow any potential for standing
or walking without orthoses. Parents are anxious to see their children meet
milestones and children will fully cooperate at this age to make it happen.
The lack of sensation in the lower extremities requires visual
inspection for skin integrity, but you do not have as many discomfort issues.
The population of patients with low-level spina bifida, who can ambulate
with just AFOs, are probably the most compliant patients. When they are in need
of RGOs and have grown older and larger, issues of compliance take hold for
both parents and children. The work that it takes to don and doff RGOs is
substantial requiring true commitment from the family. Your best tool here is
to reinforce the health benefits of activity for weight control and
weight-bearing for bone density. Also, discourage these children from sitting
in a wheelchair full time as this will directly contribute to contractures.
When the parents grasp these positive outcomes, they are more likely to
enforce wear time. Use rewards to encourage and sustain positive behavior.
Making charts to track usage with fun stickers that can lead to special events
like a movie, trip to the park, playtime with a friend or something else the
child enjoys. These are great ways to reinforce the activity, plus build
self-esteem and pride of accomplishment.
Positive outcomes
In contrast, children with
cerebral palsy often are ambulatory, but display toe walking
or crouching trends. They can possibly run at high speeds better than walking
slowly, appearing highly functional. The parents approach bracing with,
“How long will my child need to wear these things to fix the
problem?” You are now working with several unwilling and uncommitted
parties – the parent and the child – and you will need to convince
them of positive outcomes.
The art of negotiation has a direct correlation to compliance and it
begins with the practitioner. Conveying your working knowledge of the benefits
of bracing into layman’s terms is a step in the right direction. Explain
that the plantar flexors that make you walk on your toes need to be stretched
over a long period of time. It is part of the natural history of cerebral palsy
that the length of the muscles can not keep up with bone growth of the child,
especially during growth spurts. Using bracing in conjunction with stretching
exercises and onabotulinumtoxinA treatment can prevent or at least postpone
tendon of Achilles lengthening surgery. This is also true of tight hamstrings
which result in a crouched gait, or overall weakness. By giving a physical
demonstration, you will reinforce the concept with a visual aid. Have them try
to duplicate the actions and feel what muscle groups are being stressed which
can be extremely effective to illustrate the need.
Control
What is a difficult concept to explain is the patterning that presents
itself in cerebral palsy which stems from signals from the brain that give an
all or nothing, or flex versus extend command to the extremities producing an
exaggerated response in gait. The small increments of control are absent and
cannot change through patient desire. The usage of an orthosis introduces an
outside control element, or lever, to override the muscles that insist on
firing. We understand that concept through our experience, training and studies
of motion analysis. Showing a parent or the child a graph or scientific data
does not work as well as having everybody stand on their tiptoes, or bend down
to pick up a penny without your heel leaving the floor. Somehow you must
convince the family and patient through your knowledge and teaching skills to
use the brace for their best interest.
Make a statement
Today’s technology has introduced a plethora of patterns to choose
from, which have replaced the white or solid colors for orthoses. The selection
has revolutionized the possibilities to add dimension from the rather boring
braces from the past into fun fashion statements.
Shriners Hospital Tampa conducted a survey years ago of our patients who
wore braces with patterns and also wore white braces for comparison. The
results revealed a better self image, peer acceptance, and ultimately, an
improved compliance.
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| Varying patterns and colors give young patients a choice in a process where they might otherwise feel helpless and uninvolved. |
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Another benefit to having varying options and styles is to encourage the
patient to decide the color for the braces, giving the patient control over
something. The child has been dealt a rough role in life where control over his
or her body is limited at best. The simple decision of a pattern can be
paramount for building self-esteem and pride in appearance. Parents need to be
reminded at times that this choice needs to be relinquished to the child. If
your facility is fortunate enough to have talented technicians with artistic
flare, then the sidebars and pelvic bands can be coordinated with color and
designs to the plastic pattern. We call it the “wow factor” that
impresses all of those who see the end product. This definitely contributes to
compliance.
Boost confidence
The final area of discussion about compliance is idiopathic scoliosis
and TLSOs. This diagnosis usually strikes during the early teenage years, which
is a difficult time for self-image and confidence. When you add a deformity
that is not going to disappear and often is visible through clothing and
posture, it becomes overwhelming.
The practitioner inherits a powerful role through the eyes of the
parents. We represent the solution, the cure-all, the promise for hope, and
– for the teenager – a potential enemy. The brace is not going to be
comfortable so already it is a hard sell. However, with proper skills it can be
tolerable so that wearing it is not impossible. Therein lays the trick –
getting compliance from a teenager whose vision of the future does not stretch
past next month.
First, get the parents on your side with a full explanation. Explain
that the brace is not going to permanently correct the curve, but has the goal
of keeping the curve from progressing. The teen may possibly be listening to
this, too. After you have a commitment from the parents that they will do their
best to enforce the wearing of the brace, then speak directly to the teenager.
It is so important that the patient takes ownership of the diagnosis and
treatment protocol. Reinforce that he or she is the only one who can keep the
possibility of curve progression at a minimum through wearing the brace. Be
honest and tell him or her that there is no guarantee, but with an illustration
of the dynamics of a scoliosis brace, the curve can be straighter when in use,
and therefore the magnitude of the curve is more controllable.
Study the radiographs out-of-brace and in-brace with the family showing
the results. Be specific and explain the expectations of the treatment course
and always be available to help with obstacles. Highlight that this is not
forever and there is an end of the regiment with skeletal maturity. This is
like a contract between you and the family that by working together, the best
case scenario is possible.
Focus on success
Compliance issues will never go away. Even using all the tricks in the
bag, some orthoses will end up in the closet collecting dust. The goal here is
to focus on the potential successes where the practitioners and technicians
have collaborated to provide the families with orthoses that not only work
well, but look great so that the patient is proud to wear them. Take initiative
to share your knowledge so through an improved understanding of orthotics, the
patient and family will be an informed and more compliant consumer.
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