Imagine for a moment that you are a child arriving at a new hospital. You are sick and going to the hospital is not part of your routine. Everyone around you wears scrubs with a mask. The hospital smells weird and the lights are too bright. It’s noisy near the nurses’ station and it’s hard to understand what people are saying to you. You see tall people’s lips move, but it’s so loud you don’t understand what they’re telling you to do.
“You can imagine how the hospital environment is a great configuration of problems and obstacles, not only for the management of the diagnosis, but also for the experience of the family and the patients when they come to the hospital” , says Dr. Michele Kong, MD, MBA, professor of pediatrics at the University of Alabama and intensivist practitioner at Children’s Hospital of Alabama. “We need to understand that because there are many patients with special needs, in all settings, we need to remove barriers to better care for them.”
During the recent NRC Health 2022 Pediatric Collaboration at Alabama Children’s Hospital, Kong explained that one in five patients in the community had a sensory barrier. “Wherever the patient presents, it’s in that environment that this regulation and this particular issue can become a real problem for someone with an invisible disability,” she says.
Sensory processing problems are common in children with special needs. Sensory overload can also exacerbate symptoms and become a barrier to assessment, diagnosis, treatment, and a positive experience.
Challenges can include:
Atypical response to sensory input
Variability in range and severity of symptoms and needs
Rigid insistence on uniformity of environment and routine
Inability to understand social expectations or norms
Attention problems and difficulty with transitions
Changing communication strategies and making environmental modifications can help guard against sensory overload. To meet the growing needs of patients with sensory sensitivities, Children’s of Alabama has created the sensory pathway offer patients resources to reduce the sensory overload experienced during their visits to the hospital. The two main ways to introduce a patient to the Journey are the identification of the caregiver or the intervention of the staff. Once a patient is placed on the sensory pathway, tools such as noise canceling headphones or weighted pads and other resources are used to help meet the patient’s sensory needs. Staff in all areas where the sensory pathway is active are trained in effective ways to communicate and work with patients who have sensory sensitivities.
To ensure the success of the sensory journey, Children’s of Alabama focuses on four main elements with its staff: training, communication, environmental changes and resource use.
Staff training topics include:
Awareness of the challenges of sensory processing
Identify deregulated behaviors
Moving from a reactive to a proactive approach to care
Familiarization with available tools, resources and unit workflow
When it comes to environmental changes, Certified Child Life Specialist Chelsea Brown, BS, CCLS, AC, at Children’s of Alabama says being more aware of the environment patients find themselves in will help every patient to have a better experience. “We can guard against sensory overload by dimming the lights, reducing TV noise — things that we naturally muffle,” she says. “When we can, we want to place patients in less stimulating areas, like the corners of our units; reduce staff in the room; use the same staff when possible; and use a single voice to speak during the procedure. in order to reduce the stimuli.”
Brown, also a sensory pathways coordinator, says they also use social stories that are written explanations of the progress of the procedures. Each social story is written in the first person and conveys specific sensory information, providing patients with their social norm, which is important because these patients are very routine. “The routine is predictable,” Brown says. “Predictability gives us control and comfort. When we lose that, we lose our comfort, we lose control. When we give more information, it gives them more certainty, more control, less threat and a better adaptability.”
Based on emerging themes from caregiver feedback, the sensory journey provided a new sense of comfort and enhanced the overall experience at Children’s of Alabama.
Other patient experience comments from NRC Health of Children’s of Alabama include:
“From the moment I knocked on the door, I think the staff weren’t just welcoming but paid particular attention at my son sensory issues. They put us in a separate room and really took care of him in the situation we were in. I am very grateful for this and I highly recommend them.”
“My daughter is autistic and can’t speak. She’s three, so she’s very unhappy in any health facility. went beyond to provide us with the best possible care to keep her comfortable with her sensory sensitivitiesand to a mother, That says everything.”
“Staff working to ensure that my child sensory sensitivities have been respected do one huge difference when we visited which meant it was much more positive experience for my child.”
Click here to see Children’s of Alabama’s full presentation at the 2022 NRC Health Pediatric Conference.