AAC and communicative participation for PALS (Peters et al., 2023)

Purpose: Many people with amyotrophic lateral sclerosis (PALS) experience speech changes, which may interfere with participation in communication situations. This study was designed to investigate the effects of aided communication 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 various 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 function, but PALS with anarthria (ALSFRS-R speech rating = 0) reported better participation 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. Variability in self-rated communicative participation, even for PALS at the same level of speech function, highlights the need for an individualized approach and consideration of personal and environmental factors in AAC intervention.

Supplemental Material S1. Communicative Participation Item Bank (CPIB; Baylor et al., 2013) questions used in the questionnaire, listed in the order presented.

Supplemental Material S2. Structure and characteristics of the adapted Communicative Participation Item Bank (CPIB; Baylor et al., 2013) scale.

Supplemental Material S3. Communicative Participation Item Bank (CPIB; Baylor et al., 2013) instructions and example question for Group 1.

Supplemental Material S4. Communicative Participation Item Bank (CPIB; Baylor et al., 2013) instructions and example question for Group 2.

Supplemental Material S5. Descriptive statistics for total eight-item Communicative Participation Item Bank (CPIB; Baylor et al., 2013) score for Group 1 and for each condition for Group 2, score increases for Group 2 when using communication aids, and effect sizes for those differences, by Revised amyotrophic lateral sclerosis Functional Rating Scale (Bakker et al., 2020; Cedarbaum et al., 1999) speech rating.

Peters, B., Wiedrick, J., & Baylor, C. (2023). Effects of aided communication on communicative participation for people with amyotrophic lateral sclerosis. American Journal of Speech-Language Pathology, 32(4), 1450–1465. https://doi.org/10.1044/2023_AJSLP-22-00346