Brain-Computer interfaces for communication: preferences of individuals with locked-in syndrome, caregivers and researchers.

The development of Brain-Computer Interfaces to restore communication (cBCIs) in people with severe motor impairment ideally relies on a close collaboration between end-users and other stakeholders, such as caregivers and researchers. Awareness about potential differences in opinion between these gr...

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Published in:Disability & Rehabilitation: Assistive Technology Vol. 18; no. 6; pp. 963 - 974
Main Authors: Branco, Mariana P., Pels, Elmar G. M., Nijboer, Femke, Ramsey, Nick F., Vansteensel, Mariska J.
Format: pictorial research tables/charts Journal Article
Published: Taylor & Francis Ltd Aug2023
Online Access:View this record in EBSCOhost
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      dt: Aug2023
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      pub: Taylor & Francis Ltd
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        atl: Brain-Computer interfaces for communication: preferences of individuals with locked-in syndrome, caregivers and researchers.
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          Branco, Mariana P.
          Pels, Elmar G. M.
          Nijboer, Femke
          Ramsey, Nick F.
          Vansteensel, Mariska J.
        affil: UMC Utrecht Brain Center, Department of Neurology and Neurosurgery, University Medical Center Utrecht, Utrecht, The Netherlands
      sug:
        subj:
          Brain-Computer Interfaces
          Caregiver Attitudes
          Research Personnel
          Locked-In Syndrome
          Communication
          Assistive Technology
          Human
          Caregivers
          Questionnaires
          Netherlands
          Funding Source
          Videorecording
          Descriptive Statistics
          Kruskal-Wallis Test
          Mann-Whitney U Test
          Male
          Female
          Middle Age
          Adult
          Middle Aged: 45-64 years
          Adult: 19-44 years
          Male
          Female
      ab: The development of Brain-Computer Interfaces to restore communication (cBCIs) in people with severe motor impairment ideally relies on a close collaboration between end-users and other stakeholders, such as caregivers and researchers. Awareness about potential differences in opinion between these groups is crucial for development of usable cBCIs and access technology (AT) in general. In this study, we compared the opinions of prospective cBCI users, their caregivers and cBCI researchers regarding: (1) what applications would users like to control with a cBCI; (2) what mental strategies would users prefer to use for cBCI control; and (3) at what stage of their clinical trajectory would users like to be informed about AT and cBCIs. We collected data from 28 individuals with locked-in syndrome, 29 of their caregivers and 28 cBCI researchers. The questionnaire was supported with animation videos to explain different cBCI concepts, the utility of which was also assessed. Opinions of the three groups were aligned with respect to the most desired cBCI applications, but diverged regarding mental strategies and the timing of being informed about cBCIs. Animation videos were regarded as clear and useful tools to explain cBCIs and mental strategies to end-users and other stakeholders. Disagreements were clear between stakeholders regarding which mental strategies users prefer to use and when they would like to be informed about cBCIs. To move forward in the development and clinical implementation of cBCIs, it will be necessary to align the research agendas with the needs of the end-users and caregivers. Brain-Computer Interfaces may offer people with severe motor impairment a brain-based and muscle-independent approach to control communication-technology. The successful development of communication BCIs (cBCIs) relies on a close collaboration between end-users and other stakeholders, such as caregivers and researchers. Our work reveals that people with locked-in syndrome (end-users), their caregivers and researchers developing cBCIs agree that direct and private forms of communication are the most desired cBCI applications, but disagree regarding the preferred mental strategies for cBCI control and when to be informed about cBCIs. Animation videos are an effective tool for providing information to individuals, independent of their level of health literacy, regarding the concept of cBCIs and mental strategies for control. The misalignment in opinions of different groups of stakeholders about cBCIs strengthens the argument for a user-centered design approach in the development of cBCIs and access technology designed for daily life usage.
      pubtype: Academic Journal
      doctype:
        pictorial
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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