Impact of communication modalities on autonomy and social participation of persons with locked-in syndrome

Introduction Locked-in syndrome (LIS) is a complex neurological condition characterised 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 three objectives were: (1) to describe the distribution of communication modalities used by persons with LIS, (2) to describe the satisfaction of persons with LIS with their communication modality and social participation, and (3) 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 were communication modality, examination of communication ability, satisfaction with the communication modality and contribution of the communication modality to social participation. Results Of the 53 participants, their mean age was 52years, 43% used low tech AAC devices, 43% used high tech AAC devices and 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 and 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.