Perspectives of persons with ALS on the design of brain-computer interface (BCI) communication technology

Brain-computer interfaces (BCIs) may serve as augmentative communication systems for individuals with amyotrophic lateral sclerosis (ALS) who have lost the ability to speak and move their limbs. While BCI technology has potential value for these individuals, BCI research has emphasized issues such as algorithm development and signal processing techniques instead of BCI user needs and preferences. In this study, an in-depth qualitative focus group was conducted with 8 dyads of potential BCI users -- individuals with ALS and their caregivers. The participants were asked about their needs and preferences when considering the possibility of using BCIs as a future communication technology. Participants expressed concern about personal factors that would affect their ability to effectively use a BCI such as fatigue, comfort, setup convenience, technical expertise, and appearance. In addition, relational factors that would impact the ability of the BCI to facilitate interpersonal communication garnered considerable attention. These included issues such as flexibility of the communication interface, the ability to communicate remotely, and the simultaneous benefit and burden of the technology on relationships with family and friends. Participants were eager for research to address these concerns, expressing that a functional communication network would reduce feelings of isolation, increase independence, and improve their quality of life. Findings from this focus group can better direct practical research by aligning BCI technologies with the needs and preferences of the users and systematically integrating their opinions into the design and development of an acceptable communication technology.