Building bonds with patients and their families, as well as a deeper understanding of their day-to-day lives, gives practitioners insight they can use to create a management plan that everyone can embrace. Experts offer advice on connecting, and weigh in on the management challenges and opportunities of hand-held tech.
By Shalmali Pal
Patient compliance with prescribed devices and treatment protocols is a perpetual challenge for lower extremity practitioners.1 When it comes to pediatric patients, compliance among parents also becomes part of the equation.
LER: Pediatrics took a closer look in 2014 at strategies for making parents your clinical allies.2 Four years later, many of those same principles apply in the sense that “sometimes, I feel like I’m treating the whole family,” noted Scott D. Cummings PT, CPO, clinician and compliance director for Next Step Bionics & Prosthetics in Manchester, New Hampshire. “I want anybody who is coming in with the patient—a parent, a grandparent, siblings, a playmate—to be comfortable with me and our company. I think that reinforces the relationship I’m building with the patient.”
But building those in-person relationships may require a different approach than a few years ago based on changes in healthcare—and a new emphasis on health literacy—and society, most notably the explosion of our “online” lives. LER: Pediatrics checked back with lower extremity practitioners for tips on building and fostering the connection among pediatric patients, parents, and practitioners.
Clinical and unconventional
Practitioners must be willing to give up some of the long-held metrics around patient encounters, such as the duration of an appointment.3 Whether it’s an initial meeting or a follow-up, accept that pediatric patients and their parents need more time, experts said.
“You can’t make them feel rushed during the appointment. You really have to listen to their questions and give them good answers,” advised Brendan Rooney, CO, owner of Children’s O&P Services in Highland, New York. “Parents often have a lot of questions – often more questions than they might have if they were seeking treatment themselves—because it is their child, so you need to be prepared for that.”
Tyler Sexton, MD, CHT, DMT, chair of pediatrics at Singing River Hospital in Pascagoula, Mississippi, specializes in treating children with cerebral palsy (CP). He suggested that once the introductions have been made, start with a nonclinical conversational opener.
“I might ask a two-year-old, ‘What’s your favorite color?’” he said. “Or, if it’s an older child and he’s wearing a hat with a sports logo, I might say ‘So you’re a Mets fan?’ I think it’s important to engage the child first, and let the parents see that you are interested in their kid; that he’s not just another patient.”
Robert Conenello, DPM, of Orangetown Podiatry in Orangeburg, New York, pointed out that follow-up visits may have to be scheduled at shorter intervals, particularly if the child has complaints that are not directly related to the device.
“Complaints about a device may be because of the device itself—maybe it needs adjusting or more padding. But if you’ve determined that the child’s complaints are more about the stigma of wearing the device don’t send them off on their own for four weeks. Do a follow-up in ten days and see where things stand,” noted Conenello, who is a clinical adviser to the Special Olympics Fit Feet project and past president of the American Academy of Pediatric Sports Medicine.
In addition to the time element, Conenello and Sexton urged practitioners to be professional, but with a little bit of “play.” For instance, Conenello told of an encounter with a patient and her sister. Just as he walked into the exam room, he caught the two girls dancing.
“I asked them to show me the dance they had learned to a rap song. It was a way to make them feel comfortable. It also showed the parent that I was actively interested in the patients. Ultimately, I think the key to compliance is to build trust,” he said.
“I encourage clinicians to be dynamic, maybe even be a little off-the-wall,” Sexton noted. “Professionalism has its place, but there’s no downside to show our fun side with these kids. I wear my superhero t-shirts all the time. It’s important to stay culturally relevant and find a way to connect.”
Your online allies
Should devices—smart phones, tablets, hand-held games, music-playing devices—be banned from the exam room? How likely is it that the parent or patient will give their undivided attention to the practitioner if they are eyeing their social media feed, or battling monsters in an online game?
But the experts agreed that such devices can become an integral and useful part of the patient-parent-practitioner exchange.
For instance, Conenello said that rather than telling a young child about his muscle imbalance and lower limb asymmetry, he’ll show it to him.
“If a child has an issue with gait, then I’ll ask if it’s OK for me to film them while they move,” he said. “I’ll just pull out my smart phone or iPad, video them for a few minutes, and then we’ll watch it together. I find that if the child can feel or see what we are trying to treat, they are more likely to believe in the treatment.”
Another issue: Parents often turn up at an appointment armed with downloaded information on their child’s condition or treatment, which has pros and cons.
“Dr. Google is my biggest enemy,” Sexton joked. “Seriously, it’s good for patients to be informed; it’s good to know what kinds of questions to ask the doctor. I don’t mind that. But you don’t want a situation where the patient trusts the Internet more than they trust you, their actual doctor.”
Rooney agreed that it’s a positive for parents to come to the appointment with questions, but that online misinformation can be a problem. He said he will often guide patients and their parents to websites and online outlets that he trusts to convey more accurate information.
Rooney and Sexton said going online is a great way gain immediate access to images of devices, the various colors and patterns kids can choose from to decorate the device, or even images of a child who is similar in age to the patient wearing a device. Seeing a “real-world” example of a brace in action may be particularly helpful for getting younger children to understand the situation, Sexton added.
Cummings stressed the importance of letting the parents know that their desire for information is appreciated and laudable, but he cautioned against letting them dominate the appointment time with this newfound knowledge.
“They might be trying to drive the appointment the way they think it should be go based on the information they’ve gathered, ie, their preconceived notions,” he said. “It takes a fine touch to allow them some leeway so that they feel they have some ownership over the interaction, but as the provider with years of experience and expertise, we have to ultimately man- age the situation.”
One way to do that is to start the education process on the diagnosis and the treatment from the outset. “Before I take measurements, before I take a cast, before I do anything, I will focus on the education aspect [of the diagnosis and treatment],” Cummings said. “I think that’s an important first step to ensure the parent is on board with the treatment the providers have planned.”
Finally, Sexton said his practice has embraced a secure healthcare portal to communicate with patients on a semiregular basis. Through the practice’s electronic health records system, notes are sent directly to patients encouraging them to look at their test results or reports; to check devices for signs of wear and tear; or simply as a way for Sexton to find out how the patient is progressing.
“I try to get them to continue to engage in their own healthcare, and I’ll use the tech to bridge the gaps between clinical visits and home life,” he noted. “I think this kind of interaction really strengthens the relationships. It’s not just about seeing each other once every six weeks in my office. It also can give me a better sense of whether they are following the treatment protocol that we’ve set up. If there’s a problem with a device or it needs an adjustment, they can contact me almost immediately and we can take care of the problem.”
Of course, sometimes practitioners will need to ask parents and patients to put away their devices, though diplomacy is still called for, Sexton noted. “I’ll say, ‘I understand that the idea of being “unplugged” for more than five minutes is a little scary. But for the next five to ten minutes, let’s all unplug and focus on what matters, because the right answers aren’t going to be on that device right now.’”
And there are times when the “distraction” of a phone call or text message can be a boon, especially if a young patient seems hesitant to share information in front of a parent. “Sometimes, a parent voluntarily leaves to take a phone call, and the child is more willing to tell me how they really feel about the treatment,” Conenello noted.
Compromise and contracts
Ensuring that patient and parent enthusiasm for the treatment protocol continues outside the exam room is one of the more difficult aspects of compliance.4 Classic scenarios include those in which the parents and child butt heads over the use of a device, or the child claims to be wearing the device, but in reality, it’s sitting in a school locker or backpack all day.
That’s when Cummings says he needs to put on his metaphorical “referee shirt.” He noted that in these situations, it’s often the case that the parents and patient have different ideas about the treatment.
“The parents may understand some of the science that tells them that the device offers benefit, but don’t count on the patient understanding that, particularly if they are at a point in life where peer acceptance is very important to them,” he noted, referring specifically to adolescents.
Cummings also pointed out that, in his experience, push back on device use is more common with orthoses than prostheses. A pros- thesis will allow a child to be active and live a more typical life. “I don’t think prostheses carry as much stigma these days,” he said, based on mainstream media coverage of hi-tech limbs.5 “There’s a level of coolness to [prostheses] that doesn’t always exist in orthotics.”
Cummings said he opts for a verbal contract with patients that means “I’ll do my very best to provide care; to make the orthoses. Your very tough job is to wear it as instructed.”
Rooney shared the story of a patient, aged about 8 years, who was diagnosed with idiopathic toe walking. “She would take the braces off on the school bus and put them in her backpack. On the way home, she’d put the braces back on and walk in the house. As far as her parents knew, she’d been wearing her braces all day at school,” he explained.
The patient happened to be a neighbor of Rooney’s assistant, who was the first to report the gambit. But rather than hauling the patient and parents back to his clinic to read them the riot act, Rooney and the family opted for a compromise: They agreed that the patient would wear the braces at night to offset the time during the day when she refused to wear them. “It wasn’t the ideal [clinical] situation, but it was a compromise that we could all agree on,” he said.
Conenello also said he avoids direct confrontation. If the child is old enough, he’ll ask the patient what some of her goals might be. “Is it to be able to run a certain distance? To be able to spend more time with her friends? Is the goal to just feel better? I point out that they can’t really get to any of those goals without this treatment,” he said.
He’ll then create a written “contract” that outlines the full treatment plan, including the appropriate usage of the device, and sign it. “If [the patient] is old enough, I’ll have them sign it, too. Then it becomes a contract between us in which I have to hold up my end to help them reach their goals, just as they have to do their part.”
The teach back
Health literacy has become an important component of modern medicine. It’s defined by the US Department of Health and Human Services as the “degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decision.”6
So how do practitioners ensure that parents and parents have understood, to some degree, the information they’ve been given about diagnosis and treatment? Sexton argued for avoiding medical terminology whenever possible.
For example, when working with a family in which a child has cerebral palsy, he won’t use a term like spasticity. “Instead, I’ll say ‘The muscles are really tight. The bracing will help with that tightness and help him move better.’”
Sexton said he’ll then move on to the “teach-back method,”7 in which he’ll ask the parents to tell him what they’ve comprehended about muscle tightness. “The teach back helps me know how much they’ve understood, but without making them feel like they are being tested. It also encourages patient [and parent] questions and, hopefully, a deeper understanding of what we’ve talked about.”
Cummings said he relies on the “in other words” approach. He’ll explain the situation using some medical terminology if he’s determined that the parents can understand it. Then, he’ll reiterate what he said using slightly different language. “I’ll start with, ‘In other words,’ and recap what I’ve said before we proceed to having them tell me what they understood.”
“If I’ve done a good job, [the information] will come back as intended. Sometimes, it doesn’t, so we review again. And that review is not just at the initial appointment,” he stressed. “This has to be done at the fitting appointment and the follow-up appointments.”
During a fitting appointment, Rooney will provide the parents with handouts that cover FAQs and the wear and care of a brace. If the parents have also gathered online information on the device, he reviews it to ensure it’s accurate, and, again, directs people to sites that he feels offer better guidance.
Conenello and Sexton emphasized that part of ensuring health literacy is keeping in mind any previous experiences that patients and parents have had with healthcare providers. Those experiences may have been negative and could potentially impact their information intake.
Sexton, who has cerebral palsy, said, “I remember going to see doctors who’d look at me, look at my parents, and then just rattle off all this information without ever checking to see what we’d understood. Remember, you may be in a situation where they are dealing with potentially traumatic news; they are trying to wrap their heads around this, so don’t expect them to understand complicated directions about a device or a treatment plan at the same time.”
Shalmali Pal is freelance writer in Tucson, Arizona.
- Martin LR, Williams SL, Haskard AB, et al. The challenge of patient adherence. Ther Clin Risk Manag 2005;1(3):18.
- Pal S. Parents: How to make them your clinical allies. LER: Pediatrics. 2014;11(4):9-14.
- Dugdale DC, Epstein R, Pantilat SZ. Time and the patient–physician relationship. J Gen Intern Med 1999;14(Suppl 1):S34-S40.
- Maeder A, Poultney N, Morgan G. Patient compliance in home-based self-care telehealth projects. J Telemed Telecare 2015;21(8):439-442.
- Donnelly T. Are These Artificial Limbs Better Than the Real Thing? New York Post. https://nypost.com/2015/10/25/five-amputees-show-off-the-amazing-advances-in-artificial-limbs/. Published October 25, 2015. Accessed September 20, 2018.
- U.S. Department of Health and Human Services. Quick Guide to Health Literacy. Health.gov website. https://health.gov/communication/literacy/quickguide/factsbasic.htm. Accessed September 20, 2018.
- Ha Dinh TT, Bonner A, Clark R. The effectiveness of the teach-back method on adherence and self-management in health education for people with chronic disease: a systematic review. JBI Database System Rev Implement Rep 2016;14(1):210-47.