“We need to rethink how search engines work and what kind of support we offer people with aphasia,” says researcher Birgit Kvikne at the Department of Archivistics, Library and Information Science at OsloMet.
Aphasia is a language disorder that can occur after brain injury. It makes speaking, reading, writing, and understanding words difficult.
Kvikne has studied how aphasia impacts the ability to search for information and what that means for independence and participation in society.
She believes librarians could play a key role in inclusion.
A democratic principle
A core principle of democracy is that everyone should be able to participate.
“To do that, you need access to information,” says Kvikne.
In today’s digital society, online services and search engines like Google are essential.
In Norway, public search systems and certain private services aimed at the Norwegian market are legally required to be universally designed and accessible to all.
“They’re not. They exclude people with aphasia,” states Kvikne.
A growing group
“Searching online requires language skills, but this group has lost their language,” says Kvikne.
Aphasia affects around 5,000–6,000 people in Norway every year, mostly due to stroke. As more people survive strokes, the group keeps growing.
“That means a large number of people are shut out from this part of society. It’s a democratic problem.”
It reinforces feelings of isolation and loss. People feel shame, helplessness, and a loss of independence.– Birgit Kvkne
Trying new strategies
To use search engines, you need to come up with keywords, spell them correctly, and understand and evaluate the results. That’s extremely challenging with aphasia.
Many therefore try new strategies.
Some prefer browsing instead of searching. They navigate through categories, menus, or links from page to page.
It’s less demanding because it’s more visual and reduces the need to formulate specific keywords.
“But the downside is that the information you find is much more random,” says Kvikne.
Some also use image searches to look for words.
Shame and powerlessness
Others get help from family, but that takes time, patience, and trust
“That can be hard if you want to search for something private,” Kvikne explains.
Her research shows these barriers make searching so time-consuming, frustrating, and exhausting that many people with aphasia give up entirely.
“That reinforces feelings of isolation and loss. People feel shame, helplessness, and a loss of independence,” says Kvikne.
Pictures and icons
Kvikne believes search systems must be designed differently.
“That is needed to include people with aphasia in the digital society.”
She suggests services should allow for more spelling errors, offer better word suggestions, and use more visual interfaces with pictures and icons—like many apps do.
“Maybe there could even be a feature where you upload a picture or drawing?”
She also thinks artificial intelligence could eventually provide good solutions by analyzing search behavior.
Librarians as part of the support system
Today, speech therapists make up most of the support system for people with aphasia.
Kvikne believes closer collaboration between speech therapists and librarians would be an important step toward inclusion.
“Librarians know how to search, how search systems work, source criticism and trust, and how to find relevant information. They can offer courses and individual guidance.”
The right to information
Search systems are based on research, but people with aphasia are often excluded because traditional research methods require participants who can express themselves clearly.
Kvikne argues research must adapt to gain vital knowledge about this large group.
“To achieve true universal design and accessibility, we need to understand the extremes—the people who differ most from the average.”
She points out that search systems designed for those with the greatest language challenges can offer features that benefit many others as well.
“This isn’t about special adaptations—it’s about universal design based on knowledge, and the right to information.”
Reference
Kvikne, B. (2025). «Nobody talks to us … Nobody asks us». A study of aphasia and information seeking» (nva.sikt.no). PhD thesis, OsloMet.
