Augmentative and Alternative Communication Use, Service Delivery Experiences, and Communicative Participation for People with Amyotrophic Lateral Sclerosis

Abstract

People with amyotrophic lateral sclerosis (ALS) often experience changes to their speech, and may use augmentative and alternative communication (AAC) devices and techniques to maintain the ability to communicate. The use of AAC may facilitate the participation of people with ALS in various life situations involving communication. There is limited data in the literature about the AAC approaches currently used by people with ALS, the professional services they receive to support communication, or the effects of AAC on their communicative participation. This dissertation involved a nationwide online survey of people with ALS, and comprises three papers intended to add to the knowledge base about AAC and other communication-related topics in this population. The first provides a snapshot of current trends in AAC use and service delivery experiences among people with ALS, with survey results presented using descriptive statistics and data visualization. The second describes survey respondents' self-ratings of communicative participation, and explores the effects of AAC use on those ratings. The third presents exploratory data analysis conducted on survey results, with a focus on personal, environmental, and other factors that may influence communication outcomes, and on suggested topics for future research. Results highlight the diverse experiences, needs, challenges, and successes of individuals navigating living with ALS and changing communication abilities.