Thoughts from Don | Teenagers and Compliance: The Perfect Storm

Those of you who have (or work with) teens know how hard it is to convince them of anything. A famous sociologist once said, “Never get into a confrontation with a teenager, because you will always lose.” Couple that with a bracing situation and you have the perfect storm.

Here’s the story of Steve, 16, a gifted athlete with Friedreich’s Ataxia, a degenerative disease whose presentation includes a general loss of stability. This places Steve in our Inconsistent Ankle Modulation patient group. He was referred to us from Children’s Hospital (Seattle), because Steve flatly did not want to wear a brace.

Steve was fortunate. His mother had thoroughly researched both Friedreich’s Ataxia and bracing, and she was willing to try anything. Steve is in an athletic family, and he himself plays baseball among many other sports and activities. In fact, it was his unexpected awkwardness on the field that led to the diagnosis.

Steve had zero interest in bracing, but his mother managed to drag him north to us for a consultation. We discussed Steve’s specific issue—instability in the swing phase of gait, which prevented him from placing his feet in a reliably stable position. We looked at the range of relevant bracing options as well as his current solution. Steve was regularly wearing a Tri-Lock soft ankle support, which did not give adequate stability.

In the interest of gaining compliance, I asked Steve to be open to at least trying things. We carefully distinguished between what he would accept (the elastic support) and what he needed only to try and had the power to reject.

Our thought was to use the concept of the JumpStart inner shell, concealed underneath the elastic, for some stability. It was less than ideal but more than he currently had.

Steve wasn’t ready. His mom stepped in and asked for some time for him to think it over, to which I agreed. Four days later, she called: Steve had consented to try the inner shell.

So we cast him for a super-flexible polyethylene (PE) inner liner that would fit within his elastic brace. I wanted to add one more component: an outer frame similar to the DAFO 3.5 (with its sturdy ankle support and posterior strut), but truncated to just a few inches above the ankle. Thus it was below the height of a gym sock.

Steve committed to the inner shell and agreed to try the outer one in order to support my “experiment.” As we gently negotiated, Steve became less reserved and interacted more with us. I had given him the freedom to choose. He didn’t have to accept the outer shell; he just had to try it.

As part of the donning, we put a gym sock on inside out, then donned the [now three] brace pieces, and finally pulled the top of the sock down over the braces. Steve actually liked the wily cosmesis of the inside-out gym sock. I had him look in the mirror and asked him what he saw. “Nothing!” he said. That was music to my ears.

We had him walk up and down the hall, and soon he was running. Steve treated me to a high-five. Impulsively, he said, “This is d - - - - d good!” Then he grinned and blushed; his mother later told me that she had never before heard him swear. Steve himself had experienced functional improvement; the benefit was directly obvious to him. Mom and son left in high spirits.

We saw him again recently. Alas, Steve had remembered that he doesn’t wear tall athletic socks; his sock of choice is the ankle sock. Undaunted, we mapped out three bracing options for him to try: (1) the PE liner alone, with straps, (2) the PE liner under the Tri-Lock and (3) the PE liner inside the short 3.5 (essentially a DAFO 3.5 Softy, shortened, with the PE liner option).

There are probably more compliance failures than success stories. By no stretch of the imagination do I get compliance with all adolescents. When success does happen, it’s a good time to acknowledge what went right. Here are the key points I took from Steve’s story.

Listen to the patient. This is especially true for teenagers. They are not being obstinate just to annoy us. Their fear of not fitting in is real and powerful. Take the time to understand them, respond to their needs and honor where they are starting from.

Give the patient the power to say no. So many things are beyond their control. Grant them this one.

Ask the patient not to accept but to try. When Steve was ready, he tried. And it was his choice to do so.

Increased stability always comes at a tradeoff. In my experience, nothing is more rare than an addiction to wearing braces. Once a young person experiences success, he or she might then be open to new ideas.

Comfort is critical. In clearing the obstacles to compliance, this one is perhaps the most obvious but in some ways the hardest to achieve. Much of the best energy of the Cascade team is focused on comfort. We are getting very good at ultra-fine-tuning fit. The thin inner shells we’re deriving from JumpStarts are supportive yet remarkably good at fitting into shoes.

“Trying” (as opposed to committing to) a brace is not an option for everyone. Custom braces are a big investment with little room for a radical change of strategy. This is where trying one piece at a time of a two-part brace can be surprisingly delightful. Altering what’s academically necessary by stepping it down at first can work surprisingly well for compliance: less support can show them that they need more. Thus, ultimately, function is what can seal the deal.

The chances for compliance increase if you take the time to share what you’re trying to do with the patient and family, in detail, in laymen’s terms. Perhaps the easiest key point to dismiss is the first one I made: listening. Nothing wins a teenager over like real empathy. It’s easy to forget (or maybe we’re all trying to forget) what a hard time adolescence can be. Be willing to take a short trip back there for the sake of your patient.

-- Don Buethorn

Don Buethorn, CPO, is founder-owner of Cascade Dafo, Inc., and Cascade Prosthetics and Orthotics.

How do we get from No to Yes? Steve’s bracing options. Option 1: the PE liner alone, in and out of shoes. We added a couple of straps. The orthosis is barely visible, just like his ankle socks. Option 2: the PE liner inside the Tri-Lock. Option 3: the PE liner inside the DAFO 3.5. Compliance begins when you listen . . . . . . and relate.