In Between Childhood and Adulthood: Meeting the Needs of Adolescent O&P Patients

The space between childhood and adulthood can be tricky to navigate—for the growing patients, their parents, and O&P practitioners who can sometimes get caught in the middle. As child patients grow into adolescents, it’s normal for them to start pushing their boundaries, expanding their social circles, and wanting to make decisions about their treatment plans. It’s also normal for their parents, who had been steering their care, to push back themselves. While this process is normal, that does not always make it easy, says Dana Hoehn, PsyD, PL, pediatric clinical psychologist at Gillette Children’s Hospital, St. Paul, Minnesota. “It’s all a part of that; that’s a messy process of gaining autonomy,” she says. Michelle Hall, MS, CPO/L, FAAOP(D), prosthetics team lead at Gillette Children’s Hospital has seen this transition firsthand with her patients. When they are young, the biggest choice about their care they have is the design or color on the outside of their device, she says. “And they turn to their parents for their approval,” she says. As they grow, and as they live with their challenges longer, they start forming their own opinions about what they want and don’t want concerning their care. “They decide that this is what they want, and we’ll check in with the parents,” she says. “We tell them that the decision needs to be theirs, but they also live in their parent’s house.” Finding a balance between the patient and their parents can be a delicate process during these years. We spoke to experts in O&P adolescent care about what it takes to help these patients, and their families, get through their transition to adulthood and also the best ways to keep them healthy and compliant. Growing Into Autonomy Not only is it normal for adolescent patients to start expressing their own opinions about their care, it is also important for them to do so. “From the ages of zero through about 12, the parents are making most of the decisions and the kids are making very little,” says Hall. “I think adolescence is the point where that starts to cross, and the patient is making more decisions.” That is a good thing, the experts say. The more autonomy adolescents start to have in their care means the better prepared they will be when they have to guide themselves as adults. “As a child, parents are leading the care and as a young adult, we hope [the patient is] much more in control,” Hall says. “If by the time they are adults, they can be great advocates for themselves, then the whole team, and their parents, have done their job.” That said, kids are working from their limited experiences and do not always come to the best conclusions about their care on their own. One of Hall’s patients has a transfemoral amputation, and when he was ten he told her he wanted an Iron Man leg. What he described was a knee like he had seen in the movies and was well beyond anything that was technologically available for him. “That kid was fully confident that he needed an Iron Man knee,” she says. Hall says she had to work with him and his parents to explain why that kind of device was not possible. “You are not going to put 10 percent of someone’s body weight on them when you can put 1 percent,” she says. “A ten-year-old probably wouldn’t even be able to fit [that kind of device] into their pant leg.” It’s good to have these conversations, she says. The more they talk, the more patients learn and can put that knowledge to use in future choices. Getting to the point of autonomy for these patients can also be a tough process for parents. In many cases, they have seen their children go through traumatic experiences and are used to taking the reins and advocating for their care. “Adolescence is a time when we want them to take more control, and that can be a process, and it can be challenging,” Hoehn says. “That can be tricky for some of us parents to let go of that control.” It’s understandable that parents can be nervous to let go, she says, especially since the decisions being made impact the medical health of their child. “For a lot of families, that feels like it ups the stakes,” she says. “It’s really hard to fight that natural instinct to take care of our child. Our goal is that they become more independent with whatever their capabilities are. It’s really uncomfortable to let go a little bit.” Making the Transition Getting patients to that point of autonomy in their care should be a gradual process, Hoehn says. “It tends to be more frustrating if it’s a rushed transition to adult services,” she says. She says she starts having more serious conversations with the patients when they are about 13 or 14 years old. “They can have a hard time expressing what their concerns are, and I want them to get used to advocating for themselves,” she says. As they get more used to speaking out on their own behalf, they tend to have an easier time managing their care as adults, Hoehn says. “There’s enough transitions that happens to them during late adolescence,” she says. “If we can start some of these conversations earlier rather than later, it makes one less stressor for them later on.” Amira Mouad, CPO, clinic manager for Ability Prosthetics and Orthotics, Asheville, North Carolina, finds it helpful to include adolescent patients in conversations about their care and make sure they understand the significance of their choices. Many of the adolescent patients she works with have scoliosis and recommended wear schedules can be challenging to maintain. “I have found that educating adolescents on the reasoning behind these wear schedules holds significant value. “Understanding the ‘dosage effect’ and how bracing is more effective with greater periods of wear time is an important take away for most patients who require a scoliosis orthosis,” Mouad says. Sometimes, she says, there can be a conflict between the teen who may not want to wear the brace full time and the parent who insists they do so. “If we try to force compliance, it becomes a power struggle and no one wins,” she says. “Not to discount the parent’s feelings, but I do point out that this is a big step, especially for someone who has not worn a brace before. And it’s something we’re going to be treating for years, so it is important to be realistic about each other’s perspective.” In situations like these, she thinks it is best to provide information about best practices and talk to patients and parents about realistic expectations. “I think equipping people with information and being an advocate for all parties in the room is helpful,” Mouad says. “I try to really listen.” There are times when teens need encouragement to play a bigger role in their care. Sometimes they find it easier to defer to their parents instead of making important decisions themselves. The maturity of patients will play a big role as they go through this process, Hoehn says. “I’ve worked with teens who are very mature and are ready and able to take a role in their care,” she says. “I’ve also worked with teens who are more comfortable deferring to their parents.” She says that teens who are comfortable making decisions about their care require less encouragement. “It might be more of an active process with those families that the parent spearheads the care, and the teen is comfortable with it.” Like many of us, adolescents can vary in their feelings about compliance. Many of them will not know how compliant they will be until they start the process, Mouad says. Providing Peer Support One of the best ways to support adolescent patients is to help connect them to others with the same challenges. The importance of peer support for adolescents cannot be understated, says Hoehn. In their teenage years, adolescent O&P patients are more self-conscious than ever. Many want nothing more than to fit in with everyone else in their age group. “We can all remember being a teenager, and none of us wanted to stand out,” Hoehn says. “They want to be similar. They don’t want their differences to be how people see them or think of them.” Unfortunately, the nature of their medical challenges often means that it’s almost impossible not to stand out, she says. This is all happening at the same time that the opinion of their friends is starting to outweigh the opinion of their parents. Part of the solution is to help these patients connect and support one another, Hoehn says. “Across the board, I would like more of the teens I work with to have more interaction with teens who are experiencing similar challenges,” says Hoehn. “A lot of times, they don’t know teens who have similar experiences, and it can feel isolating and sometimes it can contribute to noncompliance.” Mouad says she has seen the benefits of peer support help with compliance among her patients with scoliosis. They can share tips and tricks from clothing options to donning and doffing techniques. They can also be sounding boards to one another in ways that others may not find they are able, for example, sharing stories about curve progression or stabilization, or how radiographs may look in and out of brace. “If nothing else, it gives them an outlet to speak to someone if they are struggling,” Mouad says. “It’s huge to be able to know someone else in their world is going through the same thing. You can always have sympathy for someone, but empathy is really placing yourself in the shoes of someone. We all try to do that, but it’s different if we haven’t had to walk in their shoes.” Hoehn says that it is normal for humans to seek out those with similar experiences, and O&P practitioners should be willing to find resources or facilitate those connections for the good of their patients. “There’s something to be said about finding a connection with someone who has similar experiences,” Hoehn says. “You see it in every community. We all create groups of ourselves to people that we have a connection with that you don’t have to explain everything to. They just get it. It provides a level of feeling understood that can provide a sense of community that we as humans need.” Watching Them Grow The transition to adulthood for O&P patients is different for everyone, the experts say. What works with one patient or family dynamic will not necessarily work with another. Some parents are pushier than others. Other times that pushiness can come from the teens. “Every patient is different, and every family is different,” Hoehn says. “You have to spend time with them and read them to figure out where we can push those boundaries just a little bit.” In the end, Mouad says, it’s best for everyone when patients can make informed decisions and play an active role in their care. “When you get to certain life stages, it’s important to have independent thought and decision-making,” Mouad says. “They have to feel like ‘this is my body and I’m in charge.’” Maria St. Louis-Sanchez can be contacted at msantray@yahoo.com.

Photographs: iStock.com/SolStock, Yakobchuk Olena/stock.adobe.com, Ladanifer/stock.adobe.com.

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Pediatric Orthotic & Prosthetic Clinician Department of Orthopaedic Surgery – UCSF

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