Improving the ED Care Experience for Young Patients with Sensory Sensitivities
EXECUTIVE SUMMARY
Some emergency departments (EDs) are adapting their workflows and approaches to care to meet the needs of patients with sensory sensitivities. This is particularly evident in a growing number of pediatric EDs where environmental changes have been made. Staff members are learning how to better engage and communicate with patients diagnosed with autism or other sensory sensitivities.
• The pediatric ED at Henrico Doctors’ Hospital in Richmond, VA, has worked closely with a local autism center to present a more inviting environment to patients and families with sensory sensitivity needs. This includes using calming paint colors and removing distracting alarms and other potential triggers in patient rooms.
• The hospital has trained ED staff on how to better engage and communicate with patients so a patient’s sensory sensitivities do not become a barrier to providing needed care.
• Children’s of Alabama in Birmingham has developed a sensory pathway so children with heightened sensory sensitivities will be identified early. Then, clinicians can approach these patients in way that will not overwhelm them or trigger a negative reaction.
• The sensory pathway was piloted in the ED, but has since expanded to the hospital’s operating rooms, inpatient units, and post-anesthesia care unit. A sensory pathway taskforce has been assembled to manage the program and provide leadership throughout the hospital.
Several emergency departments (EDs) are ensuring young patients with autism or other sensory sensitivities receive care that minimizes the potential for anxiety or other adverse consequences, which can occur when these patients feel overwhelmed or are approached in a way that is uncomfortable for them.
Kevin Connelly, DO, medical director of the pediatric ED at Henrico Doctors’ Hospital in Richmond, VA, says such measures make sense given the large number of children who present to the ED with these types of concerns. “The CDC [Centers for Disease Control and Prevention] says one in 54 kids ends up getting diagnosed with an autism spectrum disorder,” he explains. (More CDC statistics are available here.)
Further, patients with these sensory disorders tend to require medical services on a more frequent basis than is typical, Connelly notes. For instance, many of these children experience seizures or present with other underlying conditions that prompt recurrent visits to the ED. However, the healthcare setting can be a stressful environment for these patients, considering the sights, sounds, and the smells present in a bustling ED.
Henrico is a small community hospital with 21 beds in the adult ED and five beds in the designated pediatric area. “We wanted to make a place that is more comfortable and inviting for children and their families,” Connelly reports. “Whether [the children] are nonverbal or highly functioning, they still have different sensitivities and need someone to understand them.”
Clinicians from the ED worked with experts at the St. Joseph’s Villa Sarah Dooley Center for Autism in Richmond to determine how they could make a visit to the ED less traumatic or triggering for a patient with sensory sensitivities. This led to several simple environmental changes. For example, all patient rooms in the pediatric ED have been reconfigured and painted in blue, a calming color, Connelly shares.
“We have removed a lot of the unnecessary equipment in the rooms ... so they just look cleaner, neater, and safer,” he says. “We had children do some artwork, and we put the artwork up on the walls.”
The hospital also replaced all the bright, buzzing fluorescent fixtures with quieter LED bulbs that are connected to dimmers so that the brightness level can be adjusted as needed. Further, while monitor alarms can be heard at the nurses’ station, there is no loud dinging near patient rooms, Connelly adds.
ED staff assembled a cart that is packed with various items that can be helpful to patients with sensory sensitivities. Items include noise-canceling headphones and an overhead projector that can cast stars and calming lights on the ceiling or even play relaxing music. There are many tools people who work in the autism community have recommended for children with sensory sensitivities.
“That cart can go from room to room and offer things to [patients and families] to make their stay there more comfortable and help them manage patient anxiety,” Connelly observes.
Beyond environmental changes, ED leaders worked with experts from the Dooley Center to develop an education program for staff. Certainly, the program conveys what autism spectrum disorder is and the many different ways it can manifest. More importantly, staff learn the importance of approaching patients with this disorder in the way those patients prefer.
“If a child wants to stand up while you [put in] his IV because he is more comfortable that way, then you allow him to stand up,” Connelly notes.
The program includes instruction on how to effectively communicate with these patients, and what types of language or wording seems to work best.
“There is that initial training. Then, just like everything in medicine, you are always learning as you are doing it and being exposed to different scenarios,” Connelly explains. “The biggest thing we teach [staff] is to be flexible.”
Recently, a patient presented to the ED. He was nonverbal and not high functioning. “He came in with a caregiver from a group home. The physician who saw him wanted a chest X-ray, but he had a really hard time examining the patient,” Connelly recalls. “The physician approached the boy in a typical way, trying to interview him, interview his caregiver, and then do a physical exam that didn’t go very well.”
The radiologist arrived to take the child for an X-ray, taking hold of the boy’s arm and asking him to come with him to the X-ray room. At that point, the child melted down, Connelly relates. “He didn’t know what was going on,” he notes.
At this point, Connelly was consulted about the patient, and he agreed to come speak with the boy. “I went down and talked to his caregiver and talked to the child directly also. Even though he is non-verbal, that doesn’t mean he cannot understand. I tried to find out what his sensitivities were,” he shares.
After learning the child’s sensitivities were sound and touch, Connelly explained the doctors wanted to do some things to make sure he is healthy. He asked the boy if he wanted to go home, and the boy nodded. Connelly explained that first, the doctors were going to take a picture with a big camera, and that then he could go home. The boy nodded his head again.
“I then told the radiology technician to bring the portable machine and get the X-ray in the boy’s room, not take him to another room that is cold and loud that he is not familiar with,” Connelly explains.
This also allowed the X-ray to be performed with the boy’s caregiver present. “They brought the portable machine in, [the boy] sat there, [the radiologist] took the picture, and then they left,” Connelly says.
It was just a matter of approaching the patient differently and making the encounter comfortable. This allowed the boy to understand what was expected of him and what he could expect to happen.
How are patients with sensory sensitivities identified? That starts as soon as patients present to the triage desk. “There is a sign we put up that says we are autism and sensory sensitivity friendly,” Connelly shares. “The triage nurse in the intake process can ask the parent or caregiver and the child” if there has been a sensory sensitivity diagnosis, Connelly says. If the answer is yes, the patient and family will not be directed to the waiting room, which can be noisy and distracting to a patient with sensory sensitivities. Instead, they will immediately be brought back to a bed, Connelly adds. The entire revised approach was introduced in December 2019 after roughly one year of research and preparations. The reception has been positive from both healthcare personnel and patients. “The first night we did this, I had five patients who came to the ED because they saw [media coverage about the changes]. Their children are on the spectrum, and they wanted to experience this kind of care,” Connelly relates.
Through social media, parents across the country have been seeing the same media coverage and sharing their thoughts. Typically, these comments express a desire to see this type of autism and sensory sensitivity-friendly changes in hospitals in their regions.
Henrico leaders are expanding the approach beyond the pediatric ED. “They have already done this up on the pediatrics floors and the pediatric ICU [intensive care unit],” Connelly reports. “We are also trying to do this for patients who come into the adult ED.”
Connelly says patients with autism or sensory sensitivity disorders do not grow out of their conditions. Changes like those at Henrico can be beneficial to patients of all ages. “Hospital [administrators] have said they are interested in doing this hospitalwide so that adults can have these needs met as well,” he says. Additionally, ED staff members are cross-trained to work in both the adult and pediatric EDs, making it easier to implement the approach in both settings.
While hospital administrators usually think about the special needs of patients with physical disabilities, often placing bars and ramps in the bathrooms to ease access, they often do not give the same attention to patients with sensory disabilities, Connelly observes. The Henrico approach is one way to address this gap.
For other hospitals or EDs thinking of initiating similar changes, Connelly advises conducting extensive research. A local center of excellence on autism can be an invaluable resource.
Connelly also suggests connecting with other hospitals that have put these changes in place. For instance, he talked with an emergency medicine colleague at another hospital that had implemented a similar program. This colleague shared valuable knowledge and insight.
Children’s of Alabama in Birmingham has taken a slightly different approach toward meeting the needs of young patients with sensory sensitivities. This facility’s journey began in 2016 with its launch of a “sensory pathway” pilot project for its ED.
Leaders recognized there are patients the hospital cares for every day who present with unique challenges relating to their communication and social vulnerabilities, explains Michele Kong, MD, an associate professor in pediatric critical care at the University of Alabama at Birmingham. She says these patients may have autism, Down syndrome, attention-deficit/hyperactivity disorder, or another sensory-related special need.
“Often, these patents come to Children’s of Alabama for a medical issue, whether it be a fracture, an ear infection, or a viral infection,” she says. “Because of their core characteristics, sometimes it can pose an additional barrier to medical care.”
Similar to the program in place at Henrico, the foundation of the sensory pathway program is education.
“Staff members are trained to recognize ... the ways these kids may manifest their sensory sensitivities ... and to engage and communicate with them in a way that is appropriate for each child’s level,” Kong explains. “Further, depending on the day and what the flow of the ED is at a given moment, a patient can also be placed in a room that is quieter and further away from the flow of the ED to try to mitigate some of [the stressors] in what can be an overwhelming situation.”
There are toolkits available that include headphones, sunglasses, fidget tools, and other items that can be helpful, depending a child’s specific sensory sensitivity. If a child is sensitive to light and noise, dim the lights and ensure the provider modifies how he or she enters the room and engages the patient. The idea is to avoid triggering a patient who may have calmed down from what was initially an anxiety-producing situation.
Kong, mother to a child on the autism spectrum, explains children with these sensory sensitivities often understand better when using concrete language. “You need to avoid saying things like ‘hey, hop up on the bed,’ because for someone who is a literal, concrete thinker, that would be literally hopping like a rabbit,” she explains.
Also, some children communicate with an assistive device or understand better when a visual chart is available. “A lot of times these children do not communicate verbally; they communicate via other means,” she explains. “Modifying the way we engage and communicate with the child can clam down the anxiety and simplify the situation ... ultimately, what you want is to be able to deal with the medical issue.”
If a child is agitated, it is difficult to suture a laceration. “But what we have seen is that by doing some of these non-pharmacological interventions, you can really help alleviate a lot of the anxiety,” Kong reports.
At Children’s of Alabama, patients with sensory sensitivities usually are identified during the ED triage process, Kong explains. Often, the patient or family member accompanying the patient will disclose sensory needs.
However, in some cases, the clinician will identify the patient’s sensory sensitivities. “The triggering of the sensory pathway can happen both ways,” Kong notes. “The earlier you identify the need ... the better it is. Then, you can provide services up front, but the process can be triggered at any point during the hospitalization.”
A child may not exhibit any signs of a sensory need at triage. Later, during the child’s hospitalization, there could be clear evidence of a heightened sensory need. At that point, the pathway can be triggered. It is important to provide clinicians with this flexibility. Otherwise, clinicians will miss many patients who could benefit from the pathway, Kong stresses.
Once a sensory sensitivity is noted in a patient’s chart, any clinician who sees the patient on subsequent visits will know to trigger the pathway and understand what the child’s specific sensitivities are, Kong observes.
Since Children’s of Alabama piloted the sensory pathway in its ED, the approach has expanded to operating rooms, the post-anesthesia care unit, and inpatient units. Patient and provider feedback are the primary metrics that help leaders gauge the program’s effectiveness.
In the ED, every time a patient is put on the pathway, the family will receive a survey.
“What we have been able to show is that ... satisfaction is actually higher. A lot of that comes from both staff interactions and access to the individual tools,” Kong notes. “One family ... said that they typically have their own headphones and iPad, but because they were rushing to the hospital they forgot those items. It was so helpful for them to immediately have access to the headphones when it was recognized that [their child] had a sound sensitivity.”
For anyone interested in implementing a similar initiative, Kong suggests identifying the stakeholders involved. Be prepared to impress upon them why these proposed changes are important.
“Unless there is an understanding of why [such changes are] important and need to be done, it is very difficult because you don’t have buy-in. That is the biggest piece,” she explains.
Once there is buy-in, then it is a matter of developing a mechanism for educating staff. At Children’s of Alabama, a sensory pathway task force has been assembled to manage the process. Kong serves on the task force, along with nurse educators, child life specialists, and information technology personnel.
“Together as a team, we provide leadership to the rest of the hospital,” she explains.
A key part of this process has involved identifying lead champions within the individual units to help drive the effort. The task force is developing an online training module to help facilitate the program’s educational goals.
A growing number of pediatric emergency departments have made environmental changes, and staff members are learning how to better engage and communicate with patients diagnosed with autism or other sensory sensitivities.
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