While the patient is always the practitionerʼs first priority, establishing a convivial relationship with a childʼs parents can mean the difference between victory and failure when it comes to diagnosing, treating, and rehabilitating lower extremity problems in pediatric patients.
By Shalmali Pal
These days, there as many labels for parenting styles as there are names for mother and father: There’s kangaroo mom versus stroller mom; strict tiger parents versus permissive parents; helicopter (aka anxious) dad versus secure dad.
But when a child has special needs that include lower extremity impairments, parenting reaches another level, as mom, dad, and the rest of the family adopt and adapt to a unique way of life. In turn, the lower extremity professionals who work with these pediatric patients, and their parents, have to be comfortable with many different labels: healthcare practitioner, counselor, cheerleader, teacher, and diplomat, to name a few.
While the patient is always the first priority, establishing a convivial relationship with the parents (or even one parent) can make the difference between victory and failure when it comes to diagnosing, treating, and rehabilitating lower extremity problems.
“The success of the patient really is tied to the interaction with the parents,” said Tyler Sexton, MD, a pediatrician who works with kids with disabilities including cerebral palsy (CP). “Sometimes, parents are the only advocates for these children. As practitioners, sometimes we only see these kids in fifteen- to thirty-minute segments, so we really have to rely on the parents to find out how things are going with the child, what the potential problems are. In that sense, we are treating the whole family.”
And, as in any family, it’s best if everyone gets along. Sexton and other experts shared their advice for creating successful working relationships with parents and what to do when those relationships prove challenging.
The introductory meeting between the practitioner, the patient, and the parents is crucial, practitioners agree, as it will lay the foundation for future interaction.
Chad Brown, a BOC (Board of Certification/Accreditation) pedorthist at Metro Orthotics in St. Louis, MO, likes to jump in with both feet.
“It’s very important to me to learn as much as possible about the family and the environment that the patient is living in, so I ask a fair amount of questions,” he said. “What kinds of activities does the patient participate in? What kind of progress would [the parents] like to see? What have they tried in the past [with regard to the lower extremity problems] and what hasn’t worked out? The more information I have about the entire situation puts me in a better position to meet, or hopefully exceed, their expectations.”
The first meeting is also a time for Brown to get a sense of the family dynamics: Does one parent tend to dominate the conversation? Does one seem more protective of the child? Is the child able to communicate on his or her own at any level?
Sexton takes a slightly different approach during that first meeting: He does a quick intake of the child based on pediatric behavioral classifications: The easy-going child, the slow-to-warm child, and the difficult child. From there, he begins to paint a picture of the parents.
“The easy child will adapt pretty easily. The child is willing to try anything, whether it’s a new type of therapy or a new device, and the parents have that same attitude,” explained Sexton, who is president and chief executive officer of Caribbean Hyperbaric Medicine in Zephyrhills, FL.
“A slow-to-warm child will take a bit longer to get started. There will be some wariness at first for the child and the parents, but they will eventually warm up, and work with you,” he continued. “Now the difficult child, no matter what you do, it’s hard to get them motivated, it’s hard to show them rewards. Those parents are going to have a different mindset; they may need additional encouragement along with the child. But they may also have a system of tips and tricks to get the child to comply, so you’ll want to learn those as soon as possible.”
Lisa Swenson, PT, C/NDT, opts for an unhurried approach. She is a senior instructor at the ENRICH/JFK Partners program for developmental disabilities at the University of Colorado School of Medicine in Denver, and is the primary physical therapist at The Rise School of Denver, an inclusive preschool for children with and without special needs.
“You can’t really obtain all this information at once,” she said. “We work to develop a relationship with the family.”
Swenson consults with families in their homes as part of the ENRICH/JFK Partners program and also at the school.
At the home, Swenson does an environmental intake: Are there siblings or extended family present? What kind of support system do the parents have? How busy is their typical day?
“I can get a real sense of what home life is like,” she explained. “I have a questionnaire that I use to find out more about the daily routine. I might ask questions like ‘How is it getting your child into the car seat? How is it helping her get dressed?’ I’m trying to find out what’s working well at home in terms of the daily routine.”
At the school, the child undergoes an intake evaluation by the occupational or speech therapist. The child’s teacher, along with Swenson and the other therapists, then develop a unified plan for working with the child, whether it’s on behavioral issues or mobility problems.
While parent-teacher conferences are held semiregularly, Swenson’s interaction with parents often happens more casually, such as an introduction in the hallway or at a school event, she said.
Whatever approach is taken, a key point to remember during this inquiry phase is that “whether the patient has a more serious condition related to Down syndrome or CP, or a more common ailment like Severʼs disease or heel pain, the dominant category that parents fall into is that they want the best outcome possible for their child,” Brown said.
Motivation, communication, compliance
Having open lines of communication with parents is vital, whether that’s because they are the child’s main spokesperson or because they are paying the bills. But establishing those lines will require a practitioner to get a handle on the parents’ motivation, as that can play a large part in the treatment decision-making and compliance.
There are two extremes when it comes to parents: There are the highly motivated ones who are determined to see their children succeed as soon as possible. They can sometimes be aggressive communicators, with unrealistic expectations and demands for nearly immediate results with a treatment course.
At the other end are the permissive, less-driven parents who won’t follow through with any home-based PT exercises, or don’t want to struggle with getting the child to wear a device daily. These parents can sometimes be defensive about their lack of motivation, although they may not necessarily be any more realistic about treatment progress than their aggressive counterparts.
The majority of parents fall in the middle of the spectrum, so developing tools to deal with parents at either extreme will give practitioners an edge.
The experts agreed that sometimes an enthusiastic-to-the-point-of-pushy parent can be easier to manage than a resistant one, simply because the former has a vested interest in seeing the child improve.
“With a motivated parent who has very high expectations, I break those expectations down into smaller, more attainable goals,” Sexton explained. “That’s the key: Coming up with a realistic treatment plan and then getting everyone to focus on implementing that plan, step by step.”
For example, therapy for a child with autism spectrum disorder (ASD) and severe hypotonia may never put that child in a position to join other children on the playground. Sexton will set more realistic goals, such as helping the child gain confidence so he has fewer outbursts or improving her strength so she can help dress herself.
“My motto is: under-promise and over-deliver,” Sexton said. “Set those small, realistic goals that you know the child can achieve. And, when the aggressive parent sees the child succeeding, it’ll make them happy, and they’ll see the benefit of moving forward with treatment in a planned, methodical way.”
Ryan Hines, CO, from Park Nicollet Health Partners in St. Louis Park, MN, manages expectations by making sure that parents understand the logic behind a treatment course.
“Let’s say you fit a pair of [ankle foot orthoses (AFOs)] for toe walking,” he said. “The more motivated parents might want to come back in six months to see if there’s been any improvement, but that may be too soon to see changes, depending on the age of the child. Then you’ll have parents who don’t want to have to come back for another year, and that may be too long. So we make it a point to discuss the logical progression of when and why the child needs to be seen again, because kids will outgrow a device.”
Brown said he likes to give parents two different options, covering the pros and cons of both, make his recommendation, and then let the parents decide because that gives them a sense of ownership in the treatment process.
For example, for a child with heel pain, “one course of action would be trying an over-the-counter, mass-produced insole. I’d explain that the price point is lower on that, and it’s something we can try for a couple of weeks without a huge financial commitment,” Brown said. “If that doesn’t work out, then we move on to the option of fabricating a device, and again, go through the same decision-making process, with the parents having the final say. Making them partially responsible for the outcomes can help with compliance.”
Sometimes noncompliant parents are really just frustrated parents, Swenson pointed out. If getting a child into her AFOs every morning to get to school on time is an ordeal, the parent may be more likely to give up on the devices.
“We’ll say to the parent ‘There’s no point in all of you struggling in the morning under pressure. Bring the AFOs with you when you drop the child at school, and we’ll work on it there,’” she said. “We’ll make donning and doffing the AFOs part of the daily routine at school, so then the family can start implementing that routine at home. It becomes very matter of fact. It also takes away that sense that the parent is forcing the child to do something.”
Hines emphasized that showing parents the logical progression of treatment can act as an incentive toward compliance. For instance, when treating hypotonia, he’ll tell parents that they may be looking at two sets of supramalleolar orthoses (SMOs) before the child stops growing, based on a child’s age at the time of the initial prescription and his or her projected growth rate.
“We’ll let them know that we’ll examine the feet and legs at every visit and that, if we see progressive improvement with the SMOs, there’s the possibility that a new device will be necessary—maybe a set of UCBL [University of California Biomechanics Laboratory] foot orthoses—which are less expensive and less of a process to put on,” he explained.
It takes a village
The concept of a healthcare team has gained popularity in modern medicine, and it’s especially important when consulting with pediatric patients and their families.
For Swenson, the team approach is already built in at her school, but even during home visits, she emphasizes that she, the family, and other healthcare providers need to work as one unit.
“My job is to be the specialist who gives my knowledge to the family. I want to use my experience to help parents make decisions…. You’ve got to have them see that they are part of the team, and the team includes any other therapists they see, physicians they consult with, and the orthotists that I may refer them to. I make it a point to keep open lines of communications with everyone.”
So when a father stops Swenson in the hallway and asks her to check if his child is outgrowing an AFO, Swenson can relay that information to the orthotist.
Sexton also tells parents that, “It’s not just about coming to see me. You must see the PT, you must see the speech therapist, you must maintain visits with the orthotist or prosthetist if that’s appropriate. There’s no quick fix. We are all creating a huge road map that everyone needs to contribute to.”
To that end, parents should be encouraged to speak up about any concerns they have, especially if those concerns have to do with a device that the child is using. Hines reassures cost-conscious parents that, “we don’t charge for adjustment. We bill for the delivery of the device, and that includes the follow-up. So no news to us means the device is working out fine. Parents should always feel free to let us know that there may be a problem.”
Hines also pointed out that an interpreter is part of the healthcare team for non-English speaking parents (although the child may be quite comfortable in the language).
“The language barrier is an issue that we deal with a lot. You still have to communicate and answer all the questions, but it’s more challenging because the process is much slower,” he said.
Ultimately, practitioners need to keep in mind two major points when navigating the patient-parent-provider pathway, Sexton stated.
“First, all parents want the best quality of life for their child; that’s universal,” he said. “Second, with a special needs child, when parents get involved, the child is going to do better. This is a long-term commitment, and I think it’s important to everyone, including us as healthcare providers, to make that commitment.”
Shalmali Pal is a freelance writer based in Tucson, AZ.