The shuffling of feet, squeaking of cart wheels and scribbling of pens on clipboards fills the waiting room with relentless noise. Piercing bright lights burn down from above. Nurses, doctors and patients flood in and out of the multitude of doors, weaving every direction into the maze of hallways.
The entire place seems to be moving — noise, lights, people.
A child’s anxiety begins to rise. The legs dangling from the waiting room chair no longer swing playfully. The eyes track every movement. Breathing becomes shallow.
A hospital’s atmosphere is often troublesome for children with developmental disabilities. Couple this with unfamiliar medical procedures, such as MRIs or X-rays, and the children can become difficult to handle and potentially dangerous.
Dr. Norah Louise Johnson, professor in the College of Nursing, has spent years exploring ways to explain medical examinations to children. Now she’s using technology to ease the process.
Johnson has published four iPad apps—one each for X-Rays, nuclear medicine, MRIs and CT scans — to prepare parents and children with developmental disabilities for these procedures.
The apps can’t remove the all the stimulants associated with a hospital, but they help the child understand what nurses and doctors will be doing during the visit. This diminishes the fear of the unknown.
The apps use Social Stories, a storytelling style designed by Carol Gray, which describe a situation along with the necessary social cues and responses. Children with developmental disabilities may not know what to expect or how to react in these situations. The first-person style of the stories provides an example.
Not only is the information of the story vital, but also the way it is presented to the children.
“It’s important to put things in a list or order for them, so they know what to expect,” Johnson said. “Each line has some form of reassurance.”
Reassurance is an important part of the message delivery and something Johnson saw in her research. Studying pre- and post-procedure anxiety rates for children and parents, she noted a decrease in anxiety for both groups when given an iPad to follow the app’s story.
“If we spend some time up front, just explaining things, they really understand,” Johnson said.
In fact, Johnson’s research showed that the apps actually improved patient behavior and decreased the amount of time it took to complete the procedures.
Today, one in six children experience some form of a developmental disorder. This may impede them from reading social cues. Johnson addressed this growing problem with the interactive style of the iPad, a device that children with Autism Spectrum Disorder generally have positive responses with.
In her prior work at Children’s Hospital of Wisconsin, Johnson also applied Social Stories to hospital scenarios. At that time she published books in hard form and for electronic download.
Until that point, Social Stories had been used for other social situations, such as going to the grocery store or a school day, but not for clinical settings.
Arriving at Marquette University in 2010, Johnson paired her knowledge of Social Stories with research funding from Marquette and the Autism Society of Southeastern Wisconsin to design the first app. It explained to children the process of an X-Ray.
Medical photographers created visuals for the scripts Johnson wrote. She worked with Marquette’s computer science department to bring the stories to digital form available on an iPad.
The partnership was beneficial to both groups. Ahamed and the Ubicomp lab have a background in creating medical technology and students in the lab received experience in working directly with a client. Ahamed hopes to create more opportunities like this in the future.
Johnson studied the effects of using the app at Children’s Hospital of Wisconsin and her findings were published in the Journal of Pediatric Nursing.
The positive results the app are leading her to continue this style of work.
Johnson will apply the Social Story style to blood work procedures, as well as lengthening the existing stories to include more details about how parents should interact with healthcare providers.
“It’s going to be an encouragement for parents to really speak up and tell healthcare providers more about their child,” she said.
Too often parents are unsure of how to relay information about their child’s preferences to practitioners. This information is often useful to soothe the child during stressful procedures.
The addition of steps for parents in the Social Stories will provide a model of how this conversation can occur.
The process of creating an app that is used in hospitals today has been a journey for Johnson. In the three years it has taken, she said that she’s thankful for the apps’ success and that she’s learned a lot.
“You can have a simple idea, but to really show it in a research study and get an app developed takes a long time.”
Johnson’s hard work and dedication in making the hospital a better experience for children will certainly be beneficial for years to come.