“My World Has Expanded Even Though I'm Stuck at Home”: Experiences of Individuals With Amyotrophic Lateral Sclerosis Who Use Augmentative and Alternative Communication and Social Media

2015 ◽  
Vol 24 (4) ◽  
pp. 680-695 ◽  
Author(s):  
Jessica Caron ◽  
Janice Light
Keyword(s):  
Social Media ◽  
Amyotrophic Lateral Sclerosis ◽  
Augmentative And Alternative Communication ◽  
Future Research ◽  
Loss Of Function ◽  
Alternative Communication ◽  
Communication Modes ◽  
Communication Needs ◽  
Use Of Social Media ◽  
Lateral Sclerosis

PurposeThis study aimed to expand the current understanding of how persons with amyotrophic lateral sclerosis (pALS) use augmentative and alternative communication and social media to address their communication needs.MethodAn online focus group was used to investigate the experiences of 9 pALS who use augmentative and alternative communication and social media. Questions posed to the group related to (a) current use of social media, (b) advantages of social media, (c) barriers to independent use, (d) supports to independent use, and (e) recommendations for developers, policy makers, and other pALS.ResultsParticipants primarily reported that use of social media was a beneficial tool that provided increased communication opportunities, connections to communication partners, and networks of support. Specific results are discussed with reference to the research as well as implications for practice and recommendations for future research.ConclusionsAs individuals with ALS experience loss of function, some communication modes may no longer be viable. Providing access to different modes of communication, including social media, can allow independence, participation and better quality of life.

Speech-Generating Device Funding and Patterns of Acquisition for Persons With Amyotrophic Lateral Sclerosis

2015 ◽  
Vol 24 (4) ◽  
pp. 155-160
Author(s):  
Laura J. Ball ◽  
Gary L. Pattee ◽  
Lewis Golinker ◽  
David R. Beukelman
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Augmentative And Alternative Communication ◽  
Age Groups ◽  
Functional Communication ◽  
Alternative Communication ◽  
Work Related ◽  
Speech Generating Device ◽  
Communication Needs ◽  
Care Costs ◽  
Lateral Sclerosis

People with such severe and complex communication needs that they require speech-generating devices (SGDs) to meet daily communication needs come from all age groups and socioeconomic backgrounds (Beukelman & Mirenda, 2013). Among this group are people eligible for Medicare, which will provide payment for a percentage (typically 80 percent) of covered health care costs, including SGDs. Medicare eligibility extends to people age 65 and older and younger people who became disabled from non-work related causes. In this article, the authors first review Medicare coverage for augmentative and alternative communication (AAC) devices beginning in the 1980s and subsequently document the SGD acquisition and access of 64 people with amyotrophic lateral sclerosis (ALS) whose speech became so severely limited that they required an SGD to support functional communication.

“Augmentative and Alternative Communication (AAC) Will Give You a Voice”: Key Practices in AAC Assessment and Intervention as Described by Persons with Amyotrophic Lateral Sclerosis

2018 ◽  
Vol 39 (05) ◽  
pp. 399-415
Author(s):  
Felicia Giambalvo ◽  
Kim Kohler ◽  
Godfrey Nazareth ◽  
Jessica Caron ◽  
Susan Fager ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Augmentative And Alternative Communication ◽  
Alternative Communication ◽  
Complex Communication Needs ◽  
Multiple Modalities ◽  
Intervention Process ◽  
Communication Needs ◽  
Communication Supports ◽  
Lateral Sclerosis

AbstractThe purpose of this study was to describe the perceptions of persons with amyotrophic lateral sclerosis (pALS) who use augmentative and alternative communication (AAC) with the AAC assessment and intervention process. Twenty-one pALS with complex communication needs participated in a multipart survey (and follow-up e-mails) to provide information on their experiences with AAC assessment and intervention. A majority of the participants agreed with the importance of three key AAC intervention principles: appropriate staging of the timing of assessment and intervention activities, inclusion of communication partners, and the use of multiple modalities and strategies as communication supports. Most participants reported that their assessment and intervention experiences included at least some aspect of these three key practices. The results of this study suggest that the identified best practices in AAC should be reviewed and implemented on an individualized basis for pALS with complex communication needs.

Voice Banking to Support People Who Use Speech-Generating Devices: New Zealand Voice Donors' Perspectives

2019 ◽  
Vol 4 (4) ◽  
pp. 593-600
Author(s):  
Michelle Westley ◽  
Dean Sutherland ◽  
H. Timothy Bunnell
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
New Zealand ◽  
Augmentative And Alternative Communication ◽  
Future Research ◽  
Alternative Communication ◽  
Technical Aspects ◽  
Communication Devices ◽  
Time Required ◽  
The Voice ◽  
Lateral Sclerosis

Purpose Voice banking is the process of recording an individual's speech to create a personalized synthetic voice to use on speech-generating augmentative and alternative communication devices. This study set out to examine the experience of healthy voice donors during the ModelTalker voice banking process and to identify specific issues related to voice banking in the New Zealand context. Method Eight healthy adults and 2 children completed the ModelTalker voice banking protocol. All participants completed a questionnaire about their voice banking experience, including the length of time required as well as the ease and the technical aspects of the process. Results The median time taken to complete the voice banking process was 5 hr 30 min (range: 3 hr 10 min to 11 hr). Questionnaire responses included themes related to the voice banking process, such as increased awareness of voice banking and its benefits, positive features and challenges of the ModelTalker process, and potential adaptations for the New Zealand context. Conclusions The findings support the use of ModelTalker with New Zealand speakers and inform development of voice banking protocols. The voices created as part of this study are available for people using speech-generating devices who want to use New Zealand–accented voices. Future research is needed to investigate the voice banking experiences of clinical populations, such as people with amyotrophic lateral sclerosis.

Adaptation to Technology Use in Families of Children With Complex Communication Needs: An Integrative Review and Family Theory Application

2020 ◽  
Vol 26 (2) ◽  
pp. 153-178
Author(s):  
Patricia West ◽  
Marcia Van Riper ◽  
Gwen Wyatt ◽  
Rebecca Lehto ◽  
Sarah N. Douglas ◽  
...  
Keyword(s):  
Technology Use ◽  
Augmentative And Alternative Communication ◽  
Meta Analysis ◽  
Integrative Review ◽  
Future Research ◽  
Alternative Communication ◽  
Family Adaptation ◽  
Complex Communication Needs ◽  
Communication Needs ◽  
Conceptual Foundations

Families with children who have developmental disabilities and complex communication needs (CCNs) face challenging demands affecting family adaptation. Many children with CCNs use augmentative and alternative communication (AAC) devices to support communication, yet little is known about family adaptation to such technology. To fill this gap, an integrative review, guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation was conducted to assess conceptual foundations and the state of the science of family adaptation among children utilizing AAC. Web-based searches were conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis and the Mixed Methods Appraisal Tool. Thirty-three studies met eligibility. Findings demonstrated that to enhance the science underpinning family adaptation to AAC use, future research should be grounded conceptually and address important components of the Resiliency Model. Work in this emerging area will identify and facilitate nursing efforts to assist families as they adapt to communication technology.

scholarly journals Communication Support for People with ALS

2011 ◽  
Vol 2011 ◽  
pp. 1-6 ◽  
Author(s):  
David Beukelman ◽  
Susan Fager ◽  
Amy Nordness
Keyword(s):  
Augmentative And Alternative Communication ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Alternative Communication ◽  
Motor Speech ◽  
Motor Speech Disorder ◽  
Speech Performance ◽  
Communication Needs ◽  
Almost All ◽  
Lateral Sclerosis

Almost all people with amyotrophic lateral sclerosis (ALS) experience a motor speech disorder, such as dysarthria, as the disease progresses. At some point, 80 to of people with ALS are unable to meet their daily communication needs using natural speech. Unfortunately, once intelligibility begins to decrease, speech performance often deteriorates so rapidly that there is little time to implement an appropriate augmentative and alternative communication (AAC) intervention; therefore, appropriate timing of referral for AAC assessment and intervention continues to be a most important clinical decision-making issue. AAC acceptance and use have increased considerably during the past decade. Many people use AAC until within a few weeks of their deaths.

scholarly journals Comparing the Effects of Speech-Generating Device Display Organization on Symbol Comprehension and Use by Three Children With Developmental Delays

2017 ◽  
Vol 26 (2) ◽  
pp. 227-240 ◽  
Author(s):  
Andrea Barton-Hulsey ◽  
Jane Wegner ◽  
Nancy C. Brady ◽  
Betty H. Bunce ◽  
Rose A. Sevcik
Keyword(s):  
Augmentative And Alternative Communication ◽  
Visual Scene ◽  
Future Research ◽  
Functional Communication ◽  
Alternative Communication ◽  
Communication Assessment ◽  
Speech Generating Device ◽  
Symbol Comprehension ◽  
Communication Needs

Purpose Three children ages 3;6 to 5;3 with developmental and language delays were provided experience with a traditional grid-based display and a contextually organized visual scene display on a speech-generating device to illustrate considerations for practice and future research in augmentative and alternative communication assessment and intervention. Method Twelve symbols were taught in a grid display and visual scene display using aided input during dramatic play routines. Teaching sessions were 30 minutes a day, 5 days a week for 3 weeks. Symbol comprehension and use was assessed pre and post 3 weeks of experience. Results Comprehension of symbol vocabulary on both displays increased after 3 weeks of experience. Participants 1 and 2 used both displays largely for initiation. Participant 3 had limited expressive use of either display. Conclusions The methods used in this study demonstrate one way to inform individual differences in learning and preference for speech-generating device displays when making clinical decisions regarding augmentative and alternative communication supports for a child and their family. Future research should systematically examine the role of extant comprehension, symbol experience, functional communication needs, and the role of vocabulary type in the learning and use of grid displays versus visual scene displays.

Augmentative and Alternative Communication Assessment in Adults With Amyotrophic Lateral Sclerosis: Results of Semi-Structured Interviews

2021 ◽  
pp. 152574012110171
Author(s):  
Miechelle McKelvey ◽  
Kristy S. E. Weissling ◽  
Shelley K. Lund ◽  
Wendy Quach ◽  
Aimee Dietz
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Augmentative And Alternative Communication ◽  
Assessment Process ◽  
Speech Language Pathology ◽  
Alternative Communication ◽  
Structured Interviews ◽  
Communication Assessment ◽  
Language Pathology ◽  
Method Of Assessment ◽  
Lateral Sclerosis

This phenomenological qualitative study explored how eight speech-language pathology specialists in augmentative and alternative communication (AAC) (who self-identified as adult-focused) would approach the AAC assessment process when presented with a case study of an adult with amyotrophic lateral sclerosis (ALS). The general research questions were (a) What areas are assessed by AAC specialists evaluating individuals with ALS and (b) How do specialists evaluate the areas identified. In all, four themes emerged: (a) Area of Assessment, (b) Method of Assessment, (c) Patient Education, and (d) Decision Criteria. These results support authoritative models of AAC assessment. AAC assessment is a complex task and understanding the behaviors of specialists, as outlined in this article, may be a first step in assisting general practice SLPs to complete AAC assessments for individuals with ALS with greater confidence and comfort.

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