Developing brain-computer interfaces from a user-centered perspective: Assessing the needs of persons with amyotrophic lateral sclerosis, caregivers, and professionals
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Updated: Oct 14, 2026

A Protocol for Comprehensive Assessment of Bulbar Dysfunction in Amyotrophic Lateral Sclerosis ALS
Published on: February 21, 2011
Giulia Liberati1, Alessia Pizzimenti2, Luca Simione3
1Fondazione Santa Lucia, Rome, Italy; Institute of Neuroscience, Université catholique de Louvain, Brussels, Belgium.
Abstract:
By focus group methodology, we examined the opinions and requirements of persons with ALS, their caregivers, and health care assistants with regard to developing a brain-computer interface (BCI) system that fulfills the user's needs. Four overarching topics emerged from this analysis: 1) lack of information on BCI and its everyday applications; 2) importance of a customizable system that supports individuals throughout the various stages of the disease; 3) relationship between affectivity and technology use; and 4) importance of individuals retaining a sense of agency. These findings should be considered when developing new assistive technology. Moreover, the BCI community should acknowledge the need to bridge experimental results and its everyday application.

