TY - JOUR
T1 - A recent survey of augmentative and alternative communication use and service delivery experiences of people with amyotrophic lateral sclerosis in the United States
AU - Peters, Betts
AU - O’Brien, Kerth
AU - Fried-Oken, Melanie
N1 - Publisher Copyright:
© 2022 Informa UK Limited, trading as Taylor & Francis Group.
PY - 2022
Y1 - 2022
N2 - Purpose: The objective of this study was to explore and describe current trends in the augmentative and alternative communication (AAC) use and service delivery experiences of people with amyotrophic lateral sclerosis (PALS) in the U.S. Methods: Cross-sectional data were collected from 216 PALS via an anonymous online questionnaire in 2021. Results: Over 70% of participants reported at least some detectable speech disturbance, and approximately half used aided communication during face-to-face interactions. Among respondents with severe speech impairment, over 90% reported using speech-generating devices, and just over half reported using low-tech AAC. Most participants had met with an SLP to discuss speech and communication, but varied in both timing of the initial intervention and frequency of ongoing intervention. Fewer than half reported that their family members or other important people had received education or support related to communication for PALS. Participants also shared their use of and experiences with telephone and video calls, access methods, mounting systems, word prediction and stored phrases, and message and voice banking. Conclusions: Results highlight the importance of early referral for AAC intervention, ongoing re-evaluation and treatment, involvement of communication partners and support for multimodal communication and adaptation to changing needs.
AB - Purpose: The objective of this study was to explore and describe current trends in the augmentative and alternative communication (AAC) use and service delivery experiences of people with amyotrophic lateral sclerosis (PALS) in the U.S. Methods: Cross-sectional data were collected from 216 PALS via an anonymous online questionnaire in 2021. Results: Over 70% of participants reported at least some detectable speech disturbance, and approximately half used aided communication during face-to-face interactions. Among respondents with severe speech impairment, over 90% reported using speech-generating devices, and just over half reported using low-tech AAC. Most participants had met with an SLP to discuss speech and communication, but varied in both timing of the initial intervention and frequency of ongoing intervention. Fewer than half reported that their family members or other important people had received education or support related to communication for PALS. Participants also shared their use of and experiences with telephone and video calls, access methods, mounting systems, word prediction and stored phrases, and message and voice banking. Conclusions: Results highlight the importance of early referral for AAC intervention, ongoing re-evaluation and treatment, involvement of communication partners and support for multimodal communication and adaptation to changing needs.
KW - Amyotrophic lateral sclerosis
KW - assistive technology
KW - augmentative and alternative communication
KW - dysarthria
KW - speech-generating device
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U2 - 10.1080/17483107.2022.2149866
DO - 10.1080/17483107.2022.2149866
M3 - Article
AN - SCOPUS:85143049959
SN - 1748-3107
JO - Disability and Rehabilitation: Assistive Technology
JF - Disability and Rehabilitation: Assistive Technology
ER -