Effects of Aided Communication on Communicative Participation for People With Amyotrophic Lateral Sclerosis

Purpose: Many people with amyotrophic lateral sclerosis (PALS) experience speech changes, which may interfere with participation in communication situa-tions. This study was designed to investigate the effects of aided communica-tion on self-rated communicative participation among PALS and the relationship between speech function and communicative participation for PALS at various stages of speech impairment and communication aid use. Method: Participants with amyotrophic lateral sclerosis completed an online questionnaire in which they identified their current communication methods, rated their speech function, and rated their communicative participation in vari-ous situations on a modified version of the Communicative Participation Item Bank short form. PALS who reported using aided communication rated their communicative participation under two conditions: with unaided communication only and with access to all of their communication methods. Results: Communication aids appeared to support communicative participation for many participants with dysarthria. Across all levels of speech function, PALS who use aided communication reported better participation under the all-methods condition than the unaided-only condition, with the largest benefits for participants with anarthria (Revised ALS Functional Rating Scale [ALSFRS-R] speech rating = 0). Communicative participation ratings worsened with more severe speech impairment under both conditions for most levels of speech func-tion, but PALS with anarthria (ALSFRS-R speech rating = 0) reported better par-ticipation under the all-methods condition than those who used residual speech in combination with non speech methods (ALSFRS-R speech rating = 1). Conclusions: Aided communication can help PALS continue to participate in various communication situations as their speech function deteriorates. Variabil-ity in self-rated communicative participation, even for PALS at the same level of speech function, highlights the need for an individualized approach and consid-eration of personal and environmental factors in augmentative and alternative communication intervention.