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

Research Article Effects of Aided Communication on Communicative Participation for People With Amyotrophic Lateral Sclerosis Betts Peters,a,b Jack Wiedrick,c and Carolyn Baylord a Institute on Development and Disability, Department of Pediatrics, Oregon Health & Science University, Portland b Systems Science Program, Portland State University, OR c Biostatistics & Design Program, Oregon Health & Science University, Portland d Department of Rehabilitation Medicine, University of Washington, Seattle ARTICLE INFO Article History: Received October 28, 2022 Revision received February 7, 2023 Accepted February 23, 2023 Editor-in-Chief: Katherine C. Hustad Editor: Theresa Schölderle https://doi.org/10.1044/2023_AJSLP-22-00346 ABSTRACT 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 allmethods 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 augmentative and alternative communication intervention. Supplemental Material: https://doi.org/10.23641/asha.22782986 Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease involving degeneration of the upper and lower motor neurons, causing muscle weakness, and eventually paralysis, in various areas of the body. Involvement of Correspondence to Betts Peters: . Disclosure: The authors have declared that no competing financial or nonfinancial interests existed at the time of publication. 1450 the bulbar muscles can lead to a mixed spastic–flaccid dysarthria, with speech characterized by changes in articulation, speaking rate, phrase length, nasality, pitch, loudness, and/or voice quality (Hanson, 2011). An estimated 80%–95% of people with amyotrophic lateral sclerosis (PALS) experience dysarthria at some point in the disease process (Beukelman et al., 2011). Speech intelligibility typically decreases as ALS progresses, and some PALS eventually reach a state of American Journal of Speech-Language Pathology • Vol. 32 • 1450–1465 • July 2023 • Copyright © 2023 American Speech-Language-Hearing Association anarthria. By the last 6 months of life, a majority of PALS have difficulty communicating with their natural speech. In a survey of surviving family members and caregivers, 65% reported that they had difficulty understanding their loved one in their last 6 months, and 79% reported that their loved one had trouble being understood by less familiar communication partners during that time. Only 24.6% of respondents reported that their loved one was still speaking in their final days (Brownlee & Bruening, 2012). Maintaining the ability to communicate in the face of declining speech intelligibility is of the utmost importance for PALS. Treatment for communication disorders in ALS focuses on compensation, providing strategies and aids that help PALS to (temporarily) improve speech intelligibility or to communicate with alternative, nonspeech methods. Augmentative and alternative communication (AAC), the use of nonspeech methods to either supplement or replace speech function, is considered part of the standard of care in ALS treatment (Beukelman et al., 2011; Fried-Oken et al., 2015; Hanson, 2011). There are two main categories of AAC strategies and techniques. Unaided communication is produced using only the body and may include speech, vocalizations, manual signs, gestures, body language, and facial expressions. Aided communication involves the use of tools or devices and includes everything from simple methods such as writing on a notepad or pointing to a printed communication board to computer-based speechgenerating devices (SGDs; Beukelman & Light, 2020). The communication needs of PALS are similar to those of any other population, including Light’s (1988) essential areas of social interaction: meeting basic needs, sharing new information, establishing and maintaining social closeness with others, and following the rules of social etiquette. Many PALS report that social closeness with loved ones is particularly important (Fried-Oken et al., 2006; McKelvey et al., 2012; Murphy, 2004), and communication is strongly tied to PALS’ relationships with others (Munan et al., 2021). Discussion of physical needs and caregiving issues becomes crucial in the later stages of the disease (Brownlee & Bruening, 2012; Munan et al., 2021). Communication, whether via natural speech or AAC, is crucial to the quality of life of PALS (Felgoise et al., 2016; Linse, Aust, et al., 2018; Londral et al., 2015). In recent years, speech-language pathologists (SLPs) have increasingly focused on improvements in communicative participation, or communicating with other people in various social contexts and life situations, as important treatment outcomes (Eadie et al., 2006; Page & Yorkston, 2022). People with communication impairments have reported that restrictions to communicative participation have both functional effects, such as changes to how they approach certain situations, and emotional effects, such as frustration and embarrassment (Baylor et al., 2011). Unlike function-oriented metrics such as (...truncated)