“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 Purpose This 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. Method An online focus group was used to investigate the experiences of 9 pALS who use augmentative and ... Research Article
Research Article  |   November 2015
“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
 
Author Affiliations & Notes
  • Jessica Caron
    The Pennsylvania State University, University Park
  • Janice Light
    The Pennsylvania State University, University Park
  • Disclosure: The authors have declared that no competing interests existed at the time of publication.
    Disclosure: The authors have declared that no competing interests existed at the time of publication. ×
  • Correspondence to Jessica Caron: jgc169@psu.edu
  • Editor: Marilyn Nippold
    Editor: Marilyn Nippold×
  • Associate Editor: Cynthia Cress
    Associate Editor: Cynthia Cress×
  • Copyright © 2015 American Speech-Language-Hearing Association
Article Information
Augmentative & Alternative Communication / Special Populations / Genetic & Congenital Disorders / Telepractice & Computer-Based Approaches / Research Articles
Research Article   |   November 2015
“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
American Journal of Speech-Language Pathology, November 2015, Vol. 24, 680-695. doi:10.1044/2015_AJSLP-15-0010
History: Received January 26, 2015 , Revised June 19, 2015 , Accepted July 24, 2015
 
American Journal of Speech-Language Pathology, November 2015, Vol. 24, 680-695. doi:10.1044/2015_AJSLP-15-0010
History: Received January 26, 2015; Revised June 19, 2015; Accepted July 24, 2015
Acknowledgments
Portions of this article were submitted by the first author in partial fulfillment of PhD requirements at The Pennsylvania State University Department of Communication Disorders. This project was supported, in part, by funding from the (a) Penn State AAC Leadership Project, a doctoral training grant funded by U.S. Department of Education Grant H325D110008 (awarded to Jessica Caron); (b) Hintz Family Endowed Chair in Children's Communicative Competence (awarded to Janice Light); (c) New Century Scholars Doctoral Scholarship through the American Speech-Language-Hearing Foundation (awarded to Jessica Caron); and (d) National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR Grant H133E140026 awarded to Janice Light), which is a center within the Administration for Community Living, U.S. Department of Health and Human Services. The content does not necessarily represent the policy of these funding agencies; readers should not assume endorsement by these agencies. The authors would like to offer their gratitude and thanks to the participants who contributed their time, experiences, and ideas.

Purpose This 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.

Method An 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.

Results Participants 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.

Conclusions 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.

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