"Don't give up": Employment experiences of individuals with amyotrophic lateral sclerosis who use augmentative and alternative communication

2001 ◽  
Vol 17 (3) ◽  
pp. 179-195 ◽  
Author(s):  
David McNaughton ◽  
Janice Light ◽  
Linda Groszyk
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Augmentative And Alternative Communication ◽  
Alternative Communication ◽  
Lateral Sclerosis

“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.

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.

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.

scholarly journals Repercussions of language difficulties in people with amyotrophic lateral sclerosis and the impact on their lives and on their caregivers

Revista CEFAC ◽  
2021 ◽  
Vol 23 (4) ◽  
Author(s):  
Lavoisier Leite Neto ◽  
Thais Novais ◽  
Marcondes França Júnior ◽  
Regina Chun
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Augmentative And Alternative Communication ◽  
Family Members ◽  
Structured Interview ◽  
Cross Sectional Study ◽  
Alternative Communication ◽  
Cross Sectional ◽  
Language Difficulties ◽  
The Impact ◽  
Lateral Sclerosis

ABSTRACT Purpose: to analyze the repercussions of language difficulties in people presented with Amyotrophic Lateral Sclerosis and in their caregivers, and the impact on their lives. Methods: a cross-sectional study and qualitative approach, structured according to the COREQ. Semi-structured interview was conducted with 30 participants, family members and/or caregivers of people with the disease, most of them diagnosed for less than 5 years, and then transcribed and analyzed under repetition and relevance criteria. Results: most participants were women, spouses, between 50 and 70 years of age, in average being a caregiver for less than 3 years. Most interviewees reported the absence of communication difficulties with the disease, little use of Augmentative and Alternative Communication, restricted social interaction, and the perception of signs of discouragement and sadness in the person under their care. Regarding themselves, they mentioned anguish related to the prognosis, emotional overload, and intense change of routine in their lives. Conclusion: language difficulties were not frequently reported, despite the observation of restricted and social interactions. These findings showed the negative impacts on the quality of life of individuals and that of their family members and caregivers, which are experienced as anguish.

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