For the past 12 years, a cohort of stroke survivors has been brought together by Sargent’s Aphasia Resource Center to discuss books. As they talk about Where the Crawdads Sing, Where’d You Go, Bernadette?, or another New York Times bestseller, Aphasia Book Club members also connect over their shared experience of living with aphasia, a language disorder often caused by brain injury or stroke. The group isn’t just about support and socialization. It’s therapeutic too: center staff use meetings as an opportunity to study how bibliotherapy—the use of reading materials as treatment for medical and psychological disorders—can help people with aphasia.
“There’s a lot of evidence out there about the power of group treatment for recovery in aphasia,” says Liz Hoover (MED’13), clinical director of the Aphasia Resource Center. And for the first time, in spring 2021, amidst the coronavirus pandemic, she and her team looked at how the group benefited from reading a story that mirrors their own: Identity Theft: Rediscovering Ourselves After Stroke, by stroke survivor and Sargent Clinical Advisory Board member Debra Meyerson, with Danny Zuckerman. “Aphasia results in social isolation because it disrupts the ability to communicate,” Hoover says. “During a pandemic, the risk of social isolation is exponentially greater. Our results showed that reading this text at this time was beneficial not just to their language, but also their general sense of well-being.”
The Aphasia Resource Center, along with a similar program at California State University, East Bay, partnered with Meyerson’s organization, Stroke Onward, to study how reading the book can influence recovery and identity after a stroke. The two centers developed supportive materials, including chapter summaries, worksheets, character guides, and story timelines, to help members who may struggle with the ability to understand written or spoken language. It’s an idea that is catching on: Stroke Onward is now using the materials in six other aphasia centers.
“I think when group treatment surrounds meaningful themes and has clear communication goals in mind, the opportunities for growth, both from a psychosocial perspective and a communication skills perspective, are tremendous,” says Hoover.