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Augmentative and Alternative Communication for Adults with Total Locked-In Syndrome

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Individuals with total locked-in syndrome (TLIS) have no voluntary motor function, but remain conscious and aware of their surroundings. Despite their preserved consciousness, motor impairments leave them unable to communicate using speech or traditional AAC methods. This session will focus on interventions that may be beneficial for adults with TLIS, including brain-computer interface (BCI) technology and communication partner training. We also will examine ethical issues related to assessment, intervention, family and provider expectations, and research participation.

Recent advances in BCI technology show some promise for providing communication access to this population. We describe current BCI research involving participants with TLIS, with an emphasis on user- and family-centered perspectives. Three studies will be presented: (1) a single case design using a binary-choice communication BCI system with one 65-year-old man who presents with TLIS secondary to ALS; (2) qualitative data from interviews with the spouses of individuals with TLIS; and (3) a user-centered design process to develop a custom BCI for one 45-year-old man with TLIS secondary to brainstem stroke.

Critical components of communication partner training will be described, with the goals of upholding the individual’s rights and supporting the potential recovery of expressive communication abilities.

Clinical intervention and research participation for people with TLIS, particularly with regard to BCI, involves numerous ethical concerns, including safety and effectiveness, balancing risks against potential rewards, managing expectations, and obtaining informed consent. These topics must be addressed as BCI becomes a communication option for people with TLIS.

Author(s):

Betts Peters    
Oregon Health & Science University
United States

Brandon Eddy    
Oregon Health & Science University
United States

Kendra McInturf    
The ALS Association, Oregon & SW Washington Chapter
United States

Melanie Fried-Oken    
Oregon Health & Science University
United States

 

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