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Phenomenology of the Locked-in Syndrome: An Overview and Some Suggestions

  • Identification data

    Identifier: imarina:5132451
    Authors:
    Fernando Vidal
    Abstract:
    There is no systematic knowledge about how individuals with Locked-in Syndrome (LIS) experience their situation. A phenomenology of LIS, in the sense of a description of subjective experience as lived by the ill persons themselves, does not yet exist as an organized endeavor. The present article takes a step in that direction by reviewing various materials and making some suggestions. First-person narratives provide the most important sources, but very few have been discussed. LIS barely appears in bioethics and neuroethics. Research on Quality of Life (QOL) provides relevant information, one questionnaire study explores the sense of personal continuity in LIS patients, and LIS has been used as a test case of theories in 'embodied cognition' and to explore issues in the phenomenology of illness and communication. A systematic phenomenology of LIS would draw on these different areas: while some deal directly with subjective experience, others throw light on its psychological, sociocultural and materials conditions. Such an undertaking can contribute to the improvement of care and QOL, and help inform philosophical questions, such as those concerning the properties that define persons, the conditions of their identity and continuity, or the dynamics of embodiment and intersubjectivity.
  • Others:

    Author, as appears in the article.: Fernando Vidal
    Department: Antropologia, Filosofia i Treball Social
    URV's Author/s: Vidal, Fernando
    Keywords: Syndrome looking Quality-of-life Quality of life (qol) Phenomenology Personhood Locked-in syndrome (lis) Lived experience Invasive ventilation Illness narratives Consciousness Cognitive impairment Case series Brain-computer interfaces Amyotrophic-lateral-sclerosis Amyotrophic lateral sclerosis (als) Alternative communication
    Abstract: There is no systematic knowledge about how individuals with Locked-in Syndrome (LIS) experience their situation. A phenomenology of LIS, in the sense of a description of subjective experience as lived by the ill persons themselves, does not yet exist as an organized endeavor. The present article takes a step in that direction by reviewing various materials and making some suggestions. First-person narratives provide the most important sources, but very few have been discussed. LIS barely appears in bioethics and neuroethics. Research on Quality of Life (QOL) provides relevant information, one questionnaire study explores the sense of personal continuity in LIS patients, and LIS has been used as a test case of theories in 'embodied cognition' and to explore issues in the phenomenology of illness and communication. A systematic phenomenology of LIS would draw on these different areas: while some deal directly with subjective experience, others throw light on its psychological, sociocultural and materials conditions. Such an undertaking can contribute to the improvement of care and QOL, and help inform philosophical questions, such as those concerning the properties that define persons, the conditions of their identity and continuity, or the dynamics of embodiment and intersubjectivity.
    Thematic Areas: Sociologia i política Social sciences, biomedical Psychiatry and mental health Psicología Philosophy Neurology Medical ethics Issues, ethics and legal aspects Health policy Filosofia/teologia:subcomissão filosofia Filosofía Ethics Ciencias sociales
    licence for use: https://creativecommons.org/licenses/by/3.0/es/
    ISSN: 18745490
    Author's mail: fernando.vidal@urv.cat
    Author identifier: 0000-0002-2956-8607
    Record's date: 2024-07-27
    Papper version: info:eu-repo/semantics/acceptedVersion
    Link to the original source: https://link.springer.com/article/10.1007/s12152-018-9388-1
    Licence document URL: https://repositori.urv.cat/ca/proteccio-de-dades/
    Papper original source: Neuroethics. 2018 (2): 1-25
    APA: Fernando Vidal (2020). Phenomenology of the Locked-in Syndrome: An Overview and Some Suggestions. Neuroethics, 2018(2), 1-25. DOI: 10.1007/s12152-018-9388-1
    Article's DOI: 10.1007/s12152-018-9388-1
    Entity: Universitat Rovira i Virgili
    Journal publication year: 2020
    Publication Type: Journal Publications
  • Keywords:

    Ethics,Health Policy,Issues, Ethics and Legal Aspects,Medical Ethics,Neurology,Philosophy,Psychiatry and Mental Health,Social Sciences, Biomedical
    Syndrome looking
    Quality-of-life
    Quality of life (qol)
    Phenomenology
    Personhood
    Locked-in syndrome (lis)
    Lived experience
    Invasive ventilation
    Illness narratives
    Consciousness
    Cognitive impairment
    Case series
    Brain-computer interfaces
    Amyotrophic-lateral-sclerosis
    Amyotrophic lateral sclerosis (als)
    Alternative communication
    Sociologia i política
    Social sciences, biomedical
    Psychiatry and mental health
    Psicología
    Philosophy
    Neurology
    Medical ethics
    Issues, ethics and legal aspects
    Health policy
    Filosofia/teologia:subcomissão filosofia
    Filosofía
    Ethics
    Ciencias sociales
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