By Kathleen Christie Photography by Shawn Poynter
“Where does it hurt?”
Such a simple question. Yet many of us struggle to precisely verbalize a description or the extent of our pain. Now imagine how difficult it would be if you had no voice to communicate.
This problem is encountered every day by nurses who work with patients living with cerebral palsy, spina bifida, and other diseases that affect the ability to speak. For most health care professionals, the story would simply end with enduring these daily frustrations. But for College of Nursing Assistant Professor Rebecca Koszalinski, a self-described “tech nerd,” this is where the story begins.
Like many nurses, Koszalinski has an uncanny ability to read her patients. “If you work with someone long enough, you learn what they are trying to say without a word being spoken,” she said. “But we shouldn’t have to rely on that.”
It was six quiet words—“I want to speak for myself”—murmured by a patient in 2008 that inspired Koszalinski to find a solution. Ever since, she has been developing Speak for Myself, an easy-to-use comprehensive app that helps intubated and voiceless patients communicate with medical staff.
“Patients without a voice tend to feel ignored,” Koszalinski explained. “This is especially detrimental for these most vulnerable patients.” From mundane bathroom requests to complicated questions regarding diagnosis and prognosis, the ability to ask questions is critical to both emotional wellness and physical health.
When Koszalinski was pursuing her master’s degree and working as a rehab nurse, the only assisted speaking technology available to patients was a rudimentary communication board. Huge, cumbersome, and cost prohibitive, the boards had to be individually programmed, adding another level of expense.
Koszalinski was convinced she could find a more feasible answer. Specifically, she believed an open-source app had the potential to be the most convenient, universal, and cost-effective alternative. It was a sound idea, but the challenge was proving it.
The Speak for Myself app’s proof of concept was the result of Koszalinski’s engineering independent study course at Florida Atlantic University in 2010. It was compatible with Android devices, making it readily usable for almost anyone. Designed with large graphics to accommodate dexterity issues, the system included a body graphic for pinpointing pain locations and call buttons for family, friends, and medical staff. It even had a personalization option, enabling patients to write a custom menu to manage their particular needs.
Once the programming was complete, Koszalinski conducted usability trials at three hospitals and five specialty units in South Florida. “Initial results were encouraging,” she said. “All research showed improved patient outcomes, with decreases in frustration and perceived pain levels.”
According to Koszalinski, it’s not just the patients who suffer from the lack of communication. “Providers are just as desperate to understand, but their time is limited.” With Speak for Myself, medical personnel no longer had to wait for laborious communication attempts via dry-erase board. Answers and requests were instant and easy to understand. “Nurses kept asking to bring the app back,” she added.
After earning her PhD and publishing two papers on Speak for Myself, Koszalinski joined the College of Nursing faculty in 2015. She was awarded an internal grant to continue updating, testing, and perfecting the app to work across a variety of platforms.
Other improvements on the horizon include natural-sounding male and female voices, support for multiple languages, and an advanced care planning component.
Koszalinski is partnering with Sadie Hutson, associate professor of nursing, and Xueping Li, associate professor of industrial and systems engineering. The trio will also be incorporating contributions from graduate students in audiology and speech pathology. Further testing in hospitals throughout Knoxville and East Tennessee is being planned.
“The ultimate goal is to make Speak for Myself available to all intubated patients or others who may have difficulty with speech and language so they can communicate their thoughts, needs, and preferences clearly and easily,” Koszalinski said.
Fortunately for future generations of voiceless patients, there is a nurse willing to make an extra effort to ease their pain and anxiety.
This story originally appeared in a slightly different form in Quest Magazine.