Bright lights and beeping monitors. Unfamiliar faces clothed in caps and masks and gloves, holding syringes and sutures and strong-smelling wipes.
Hospitalization can cause sensory overload for anyone, but for a child with autism, the clinical setting can make treatment seemingly impossible.
That’s why Le Bonheur Children’s Hospital is working to create a more therapeutic environment for sensory sensitive patients, a trend on the rise in hospitals across the country. Last year, Le Bonheur launched a quality improvement project to improve experiences for patients on the autism spectrum. Hospitalist Medical Director Cynthia Cross, MD, a physician champion for the project, said the initiative is essential for patient safety.
“You can’t always tell by looking at a patient that they have special needs,” said Cross. “While they may appear on the surface not to have special needs, there are underlying features for individuals on the autism spectrum that affect care greatly. The consequences of not paying attention to those details can lead to major reactions.”
In fact, a review of incident reports was a significant catalyst for this change, said project manager Marley Lemons.
“We noticed that many of the occurrences we were having involved patients with documented triggers, but they were buried in the medical record and not addressed until we were in service recovery mode,” said Lemons. “We talked with other hospitals about best practices and put a team together to identify how we can intervene to prevent those situations.”
Toward the end of May, Le Bonheur EEG Tech Ashly Smith entered 14-year-old Kaleb Bishop’s room to attach electrodes to his head in preparation for an electroencephalogram. In addition to her usual supplies, she wheeled in a new machine designed to create calm. The mobile station is one of three available in the hospital and part of a sensory “toolkit” located on the floor. The Vecta mobile sensory station is armed with aromatherapy, calming music, an illuminated bubble column, mirrors, a wall projector and weighted light strands.
As Ashly worked, Kaleb focused on the sensory station, changing the colors of the bubble column with the simple push of a button. He watched as ping pong balls shot up the tube and fell gently back down. Then his eyes closed.
“Makes me sleepy,” he said. “It’s good.”
Nursing leaders in Le Bonheur’s Neuroscience Institute presented their implementation of the sensory toolkit at this year’s American Association of Neurological Surgeons (AANS) scientific meeting.
Key to their success, said Iva Scroggins, MSN, CNRN, RN-BC, was buy-in from staff to embrace the tools as helpful options rather than added responsibility.
“From a staff perspective, I think our nurses feel more empowered and supported,” she said. “We have a challenging population. Many children with neurological conditions have problems with touch, noises and change in environment, and usually the first things we do when a patient comes to the epilepsy monitoring unit are blood tests, an MRI and hookup for an EEG.”
To help combat the whirlwind of confusion admission to the EMU can create, the unit collaborated with the hospital’s Child Life Department to develop a script to screen for sensory-sensitive patients prior to arrival.
This type of screening has now been piloted for inpatient gastroenterology admissions. Also piloted were care plan discussions each morning during team huddles for patients identified with autism spectrum disorder (ASD). After the huddle, nurses were asked to complete a form containing interventional information for the patient’s chart. They also placed a sticker on the patient’s door to increase staff awareness.
These measures are now under review by the team tasked with scaling up to the hospital level with a goal for implementation in 2020. Forms are being customized according to departmental needs and in the process of becoming electronic for easier access.
A questionnaire for parents is currently in front of the hospital’s Family Partners Council for suggestions to help personalize responses for patients with specific sensitivities.
For Le Bonheur mom Brittany Schwaigert, communication prior to arrival signifies an enormous improvement in patient experience. Brittany’s son, Greyson, has tuberous sclerosis complex (TSC) with a secondary diagnosis of autism. The family comes to Le Bonheur for MRI scans routinely, and until recently, Brittany struggled with consistency in clinicians’ adherence to Greyson’s special needs.
“For parents of autistic children, studies have shown that the stress level associated with coming to the hospital can be comparable to that of a front-line soldier,” she said. “Preparation from the hospital can alleviate a lot of that stress for both parents and kids prior to their appointment.”
Today, about one in 59 children has been identified with ASD according to estimates from the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring (ADDM) Network. ASD commonly co-occurs with other developmental, psychiatric, neurologic, chromosomal and genetic diagnoses. The co-occurrence of one or more non-ASD developmental diagnoses is 83%. The co-occurrence of one or more psychiatric diagnoses is 10%.
“The question of, ‘Is autism more common now or are we better at diagnosing it?’ I’m not sure the answer has been fully elucidated,” said Cross. “But the fact is that we have more patients coming into the hospital identified as having autism or being somewhere on the spectrum.”
Many children with ASD have trouble with sensory regulation; the way they experience sights, sounds and touch can be different from others in similar situations. A child with ASD may respond negatively to bright lights or loud noises. Inversely, they may not respond readily to sound, touch or pain.
Knowing a child’s potential challenges can make a world of difference during treatment. For example, Brittany’s son Greyson has issues with intravenous sedation, specifically the uncomfortable sensation of having a needle in his arm for sustained periods of time. Greyson’s instinct is to jerk the needle out of his arm, and he has had the unfortunate experience of an hours-long, failed IV sedation attempt.
Now, Greyson’s chart specifies that he is unique in needing mask sedation as his first option before an MRI.
“We’ve realized that individualized care plans are best,” said Le Bonheur Nurse Jennifer Cummings, RN, a project team leader involved in the pilot project. “Before, there was so much guesswork in how we tried to take care of these kids, but now our families can let us know what works.”
The process, said Cross, will continue to evolve.
“To formally create this proactive process is the outstanding part of all this,” said Cross. “Families can see that we have prepared for their loved ones and have confidence in the care that we give. It’s just the right thing to do.”
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