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  1. Fulltext. Communication matters-pitfalls and promise of hightech communication devices in palliative care of severely physically disabled patients with amyotrophic lateral sclerosis.

    Article (Document papier) - En anglais


    Amyotrophic lateral sclerosis (ALS) is the most common motor neuron disease, leading to progressive paralysis, dysarthria, dysphagia, and respiratory disabilities.

    Therapy is mostly focused on palliative interventions.

    During the course of the disease, verbal as well as nonverbal communicative abilities become more and more impaired.

    In this light, communication has been argued to be « the essence of human life » and crucial for patients'quality of life.

    High-tech augmentative and alternative communication (HT-AAC) technologies such as eyetracking based computer devices and brain-computer-interfaces provide the possibility to maintain caregiver-independent communication and environmental control even in the advanced disease state of ALS.

    Thus, they enable patients to preserve social participation and to independently communicate end-of-life-decisions.

    In accordance with these functions of HT-AAC, their use is reported to strengthen self-determination, increase patients'quality of life and reduce caregiver burden.

    Therefore, HT-AAC should be considered as standard of (palliative) care for people with ALS.

    On the other hand, the supply with individually tailored HT-AAC technologies is limited by external and patient-inherent variables.

    This review aims to provide an overview of the possibilities and limitations of HT-AAC technologies and discuss their role in the palliative care for patients with ALS.

    Mots-clés Pascal : Soins palliatifs, Sclérose latérale amyotrophique, Communication, Communication non verbale, Technologie, Qualité vie

    Mots-clés Pascal anglais : Palliative care, Amyotrophic lateral sclerosis, Communication, Non verbal communication, Technology, Quality of life

    Logo du centre Notice produite par :
    CNSPFV - Centre national des soins palliatifs et de la fin de vie

    Cote : 41540, eD02.04.01.0

    Code Inist : 002B27C. Création : 26/10/2018.

Fermeture du portail BDSP le 1er juillet 2019

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