“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

Caron, Jessica; Light, Janice

doi:10.1044/2015_ajslp-15-0010

Cited by 54 publications

(57 citation statements)

References 39 publications

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“…Participants expressed higher selfdetermination with shopping online and making schedules (Hynan et al, 2014). Caron and Light (2015) completed a focus group on social media use with seven individuals with amyotrophic lateral sclerosis (ALS).…”

Section: Self-determinationmentioning

confidence: 99%

Community building and knowledge sharing by individuals with disabilities using social media

Sweet

LeBlanc

Stough

et al. 2019

Computer Assisted Learning

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The use of social media to share information, enhance learning, and connect with an online community has grown rapidly over the past 10 years. As social media becomes a more common tool in both formal and informal education, it is imperative to understand how it is used by individuals with disabilities. Through a systematic study of the literature, 215 articles on social media used by individuals with disabilities were selected and 29 selected for in-depth thematic analysis. Six major themes were identified: community, cyberbullying, self-esteem, self-determination, access to technology, and accessibility. To confirm these six categories, we expanded our search, yielding an additional 30 articles, for a total 59 articles reviewed in-depth. Interactions between individuals with disabilities within online communities often had the goal of acquiring knowledge or learning new information. A communities of practice theoretical framework is used to discuss interactions among the elements of social media design, learning, and the building of community by individuals with disabilities.

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Section: Self-determinationmentioning

confidence: 99%

Community building and knowledge sharing by individuals with disabilities using social media

Sweet

LeBlanc

Stough

et al. 2019

Computer Assisted Learning

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“…Patients use ETCS for a variety of activities such as face-to-face-communication—even in groups—e-mail contact, internet access and other computer functions and programs as well as for environment control ( 24 , 34 , 35 ). Regarding the increasing importance of social media, their access by HT-AAC is an additional valuable mean of communication, link to the outside world and thereby supports patients' social networks ( 36 ). Thus, HT-AAC can enable social and intellectual stimulation, independent leisure activities and the patients to express even complex thoughts.…”

Section: Advantages and Promises Of Ht-aac In Palliative Carementioning

confidence: 99%

Communication Matters—Pitfalls and Promise of Hightech Communication Devices in Palliative Care of Severely Physically Disabled Patients With Amyotrophic Lateral Sclerosis

Linse

Aust

Joos³

et al. 2018

Front. Neurol.

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Amyotrophic lateral sclerosis (ALS) is the most common motor neuron disease, leading to progressive paralysis, dysarthria, dysphagia, and respiratory disabilities. Therapy is mostly focused on palliative interventions. During the course of the disease, verbal as well as nonverbal communicative abilities become more and more impaired. In this light, communication has been argued to be “the essence of human life” and crucial for patients' quality of life. High-tech augmentative and alternative communication (HT-AAC) technologies such as eyetracking based computer devices and brain-computer-interfaces provide the possibility to maintain caregiver-independent communication and environmental control even in the advanced disease state of ALS. Thus, they enable patients to preserve social participation and to independently communicate end-of-life-decisions. In accordance with these functions of HT-AAC, their use is reported to strengthen self-determination, increase patients' quality of life and reduce caregiver burden. Therefore, HT-AAC should be considered as standard of (palliative) care for people with ALS. On the other hand, the supply with individually tailored HT-AAC technologies is limited by external and patient-inherent variables. This review aims to provide an overview of the possibilities and limitations of HT-AAC technologies and discuss their role in the palliative care for patients with ALS.

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“…4,6,7 Furthermore, AAC allows individuals to maintain the ability to make decisions and participate in society, including continuing employment 8 and involvement in the community. 9,10 Although numerous benefits of AAC have been documented in the literature, 11,12 some pALS have reported difficulty in obtaining appropriate assessments for AAC, and in acquiring needed technology in a timely manner. 7,13,14 The progression of ALS (i.e., the rate at which motor function deteriorates) can vary widely, posing challenges for both the pALS and the speech-language pathologist (SLP) who is providing services, in planning and preparing for upcoming changes.…”

Section: Amyotrophic Lateral Sclerosis (Als)mentioning

confidence: 99%

“…The 15 pALS in Murphy's 15 study expressed concern with the impact of AAC on close interpersonal communication, and emphasized the challenge of learning to make use of AAC systems. At the same time, other studies of the use of ALS have emphasized the role that AAC technology plays in supporting continued participation in maintaining social closeness, 7,9,11,12 community participation, 8 and medical decision making. 7 At present, there appear to be a variety of variables that influence the perceptions of pALS regarding AAC.…”

Section: Recommendations To Persons With Amyotrophic Lateral Sclerosismentioning

confidence: 99%

“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

McNaughton

Giambalvo

Kohler³

et al. 2018

Semin Speech Lang

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The 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.

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“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

Abstract: As 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.

Cited by 54 publications

References 39 publications

Community building and knowledge sharing by individuals with disabilities using social media

Community building and knowledge sharing by individuals with disabilities using social media

Communication Matters—Pitfalls and Promise of Hightech Communication Devices in Palliative Care of Severely Physically Disabled Patients With Amyotrophic Lateral Sclerosis

“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

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