title: Developing brain-computer interfaces from a user-centered perspective: Assessing the needs of persons with amyotrophic lateral sclerosis, caregivers, and professionals.
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.
authors.affiliation: Fondazione Santa Lucia, Rome, Italy; Institute of Neuroscience, Université catholique de Louvain, Brussels, Belgium. Electronic address: giulia.liberati@uclouvain.be.
authors.forename: Giulia
authors.initials: G
authors.lastname: Liberati
authors.affiliation: Fondazione Santa Lucia, Rome, Italy; Crossing Dialogues Association, Rome, Italy; ALS Center, Department of Neurology and Psychiatry, Sapienza University of Rome, Italy.
authors.forename: Alessia
authors.initials: A
authors.lastname: Pizzimenti
authors.affiliation: Fondazione Santa Lucia, Rome, Italy; Institute of Cognitive Sciences and Technologies, CNR, Rome, Italy.
authors.forename: Luca
authors.initials: L
authors.lastname: Simione
authors.affiliation: Fondazione Santa Lucia, Rome, Italy; Department of Psychology, Sapienza University of Rome, Italy.
authors.forename: Angela
authors.initials: A
authors.lastname: Riccio
authors.affiliation: Fondazione Santa Lucia, Rome, Italy; DIAG, Sapienza University of Rome, Italy.
authors.forename: Francesca
authors.initials: F
authors.lastname: Schettini
authors.affiliation: ALS Center, Department of Neurology and Psychiatry, Sapienza University of Rome, Italy.
authors.forename: Maurizio
authors.initials: M
authors.lastname: Inghilleri
authors.affiliation: Fondazione Santa Lucia, Rome, Italy.
authors.forename: Donatella
authors.initials: D
authors.lastname: Mattia
authors.affiliation: Fondazione Santa Lucia, Rome, Italy; DIAG, Sapienza University of Rome, Italy.
authors.forename: Febo
authors.initials: F
authors.lastname: Cincotti
mesh_terms: D000328:Adult; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology / Q000628:therapy*; D062207:Brain-Computer Interfaces / Q000523:psychology / Q000592:standards*; D017028:Caregivers / Q000523:psychology; D004644:Emotions; D005260:Female; D017144:Focus Groups; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D060685:Sense of Coherence
keywords: Amyotrophic lateral sclerosis; Brain-computer interfaces; User-centered approach