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IMPACT OF COMMUNICATION MODALITIES ON AUTONOMY AND SOCIAL PARTICIPATION OF PERSONS WITH LOCKED-IN SYNDROME

Marie-Christine Rousseau , Margaux Hautin, Véronique Blandin, Frédéric Pellas, Pascal Auquier, Karine Baumstarck, Sebastien Lazzarotto

Abstract

Introduction. Locked-in syndrome (LIS) is a complex neurological condition characterized by paralysis of all four limbs and anarthria. Persons with LIS may communicate via eye blinks/low technology Augmentative and Alternative Communication devices (low tech AAC devices) or may use high technology Augmentative and Alternative Communication devices (high tech AAC devices). Our objectives i) to describe the distribution of communication modalities used by persons with LIS, ii) to describe the satisfaction of persons with LIS with their communication modality and social participation, iii) to compare the characteristics and social participation among high tech AAC devices users versus low tech AAC devices or eye blinking users. Methods. The questionnaires were sent by e-mail to persons with LIS. Data collected: communication modality, examination of communication ability, satisfaction with the communication modality, contribution of the communication modality to social participation. Results. Fifty-three participants, mean age 52 years, 43% used low tech AAC devices, 43% used high tech AAC devices, 13% communicated via eye blinking. Communication ability was examined in only half the participants. Participants’ satisfaction with their communication modality in terms of ergonomics, rapidity, adaptability and functionality were 80%, 67%, 36% and 47% respectively. Participants who used high tech AAC devices had significantly better E-mail and social network access, could more often initiate conversations, had longer communication durations. Conclusion. The communication abilities of persons with LIS should be examined as quickly as possible and repeated regularly, high-tech AAC devices should be rapidly and systematically proposed.

IB24030  Accepted 10 March 2025

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