Communicating Through Social Media: How Persons with ALS Use the Internet to Maintain Social Connections

Persons with amyotrophic lateral sclerosis (pALS) who have complex communication needs are at an increased risk for social isolation and exclusion due to a variety of barriers that impede social participation. Internet-based communications have become ubiquitous in modern society and critical to social inclusion and participation. Recent research has suggested that persons with complex communication needs can benefit from Internet-based communications such as social networking sites to support communication and improve upon social participation (Caron & Light, 2015). This study aimed to inform models of practice by exploring the social networks and online communication perspectives of pALS who use augmentative and alternative communication (AAC) using a parallel mixed methods approach. Two research questions were posed: 1) what is the size and typology of the social networks of pALS who use AAC, and 2) what are the perspectives of pALS in using Internet-based communications to interact with these networks? Eight participants with ALS who used AAC completed a questionnaire related to their social networks. Six of those participants shared their perspectives regarding use of Internet-based communications via web-based interviews. Five participants were video recorded composing and sending an email using their assistive technology. The study found that despite many barriers to accessing the Internet, persons with ALS use Internet-based communications to enhance their opportunities for social inclusion, which may promote their ability to maintain their pre-ALS social roles, independence, and quality of life. The findings support the inclusion of Internet-based communications when conceptualizing the social participation of persons with complex communication needs.