By SUSAN JONES
There are between 2.5 million and 5 million people in the United States with aphasia, says Will Evans, an assistant professor in the Department of Communication Science and Disorders in the School of Health and Rehabilitation Sciences, but it’s still relatively invisible to the average person.
Aphasia is an acquired language disorder, Evans says, which is most commonly caused by stroke, but also can be the result of traumatic brain injury, a brain tumor or surgery. “Damage to parts of the brain that are responsible for language creates language deficits, so mostly it can affect your ability to speak, to understand and reading and writing as well,” Evans says.
Many people with aphasia are completely alert and aware, but just can’t express themselves, he says. “When you actually start talking to people, a lot of us have more direct experience than we realize. … You might know somebody who had a stroke, and you might know that they struggle to communicate, but 85 percent of Americans haven’t heard the word aphasia.”
The Aphasia Games for Health team consists of rehab professionals like Evans, game design researchers, professional game designers and an aphasia community nonprofit, all working on a set of games that will be entertaining and therapeutic. The project received $25,000 in fall 2019 from the Pitt Innovation Challenge by the Clinical and Translational Science Institute.
People can improve their speech abilities with the right kind of hard practice over time, “it just tends to be really slow,” Evans says. “You help them find that right place to practice, that sweet spot where it’s challenging but not impossible, and they get a little bit better, and you find that next spot.”
Even years or decades from the incident that caused their brain damage, people still show improvement after behavioral treatments, says Evans, who is a speech language pathologist by training and has worked at Massachusetts General Hospital in Boston and at the Pittsburgh VA Hospital.
The problem is, he says, the average person in Western Pennsylvania only gets 12 sessions their first year and has to fight to get more.
“The disconnect between people being able to get better for decades and years after, with hundreds or thousands of hours of practice, and what we can offer through health care is night and day,” Evans says. “The games are to try to be therapeutic in terms of both helping fight all the social isolation that people experience but also give them ways of practicing language … even if there’s nobody to pay for it.”
One simplified example, he says, is a modified Go Fish game. “I can’t see what somebody’s looking at but if I describe that in language in some way, then I can get the card.” Evans readily admits he’s not a game designer and expects the professionals will come up with something much better than his examples.
The components of aphasia game design include:
Repeated practice aimed at skill building and language improvement.
Performance feedback. During your game, if players have clear ways to know when an activity being practiced was correct or not, the overall efficacy will be improved.
Adjustable task difficulty. In order for games to become an effective tool for growth, it’s important that players be able to engage with it at a level appropriate to where they are in their recovery.
The project is a collaboration between Evan’s Language Rehabilitation and Cognition Lab, the OH Lab of Jessica Hammer, a professor of Learning Science at Carnegie Mellon’s Human-Computer Interaction Institute; the Aphasia Recovery Connection nonprofit and Thorny Games.
Hammer’s research focuses on game design and “she knew people from Thorny Games, which is an independent game company that specializes in language games,” Evans says.
The company was able to help them hire three independent game designers in June, who are each spearheading one of the three prototypes to be developed, Evans says. The prototypes are expected to be finished by late summer.
“The tagline here is that these indie games people come up with this incredible stuff with pretty low budgets,” he says. “They have all these print on demand services, and even though we got some pilot funding, we can make some pretty serious prototypes for a very low cost and then offer them to anybody for free. … It’s low cost, high impact.”
One possible game could be designed to work on Zoom, which members of the aphasia community have been using “for years before it was cool,” Evans says. The Zoom groups grew out of aphasia cruises, where members of the community would help a cruise company learn how to support people who have communication problems.
Any game they develop would require that each person on the Zoom meeting have their own set of cards, possibly provided as a downloaded printable PDF. Card games are always available, he says, and you don’t need to hire a developer each time an operating system is updated.
In addition, Evans said, “We want to get people who make language games to really think about people with aphasia and consider adapting their games.”
This summer, the team joined the Pitt Ventures First Gear program from the Innovation Institute, which gave them another $3,000. The money is allowing them to do more interviews with people in the aphasia community to ask what they’d like to see in these games.
Once the prototypes are completed, they plan to “share them freely with the community that’s helping us develop them.”
Evans also hopes to get funding through the Patient-Centered Outcomes Research Institute (PCORI), which is focused on comparative effectiveness research and also stakeholder-driven research.
“The hope is that we will apply to PCORI to eventually do clinical trials with a community driven solution,” he said. “If people could get better for 10 or 20 years after their stroke, but they only get services that first year, this would be an evidence-based therapeutic approach for those people living long term with aphasia.
Susan Jones is editor of the University Times. Reach her at firstname.lastname@example.org or 412-648-4294.
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