Caron, J., & Light, J. (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, 24, 680-695.
Available through NARIC Request
Abstract: This study explored how people with amyotrophic lateral sclerosis (pALS) use augmentative and alternative communication (AAC) and social media to address their communication needs. An online focus group was conducted with 9 pALS who use AAC and social media. Questions posed to the group related to: (1) current use of social media, (2) advantages of social media, (3) barriers to independent use, (4) supports to independent use, and (5) recommendations for developers, policy makers, and other pALS. In addition to addressing the questions initiated by the moderator, participants posted comments and questions in reaction to the posts of others. 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. The results of this study demonstrate that social media played a significant role in maximizing the communication and participation of all 9 of the participants who had ALS and relied on AAC.
A detailed summary is available in a recent NARIC Research in Focus article entitled For people with ALS, social media can be a key communication tool to maintain relationships and expand networks
Submitted to NARIC database