Improving Access to Social Participation and Leisure Activities for Individuals with ALS
Authors:
Kayla Egan, OT/s; Peggy Dellea, MS, OT/L; Jennifer Buxton, MA, OTR/L, ATP, MEd
Abstract:
A gap in addressing the use of Augmentative and Alternative Communication (AAC) by people with Amyotrophic Lateral Sclerosis (pALS) for purposes beyond face-to-face (FTF) communication currently exists. This study investigated usage of AAC for virtual activities by pALS, aiming to assess its importance and evaluate facilitators and barriers. Ten participants were recruited from Boston Children’s Hospital’s Jay S. Fishman ALS Augmentative Communication Program (pALS n=6, caregivers n=4). Semi-structured interviews occurred; thematic analysis was performed via NVivo. Results suggest pALS desire AAC access to virtual activities, with email, texting, and FTF communication being most important. Facilitators include intrinsic factors, prior knowledge, and nature of activity. Barriers include software compatibility/ accessibility, abilities, and dependence. Results highlight need for improving AAC access to virtual activities for pALS.
Key Words:
ALS, AAC, Access