Improving Access to Social Participation and Leisure Activities for Individuals with ALS Using AAC Devices
Authors:
Ammel Sawan, OT/s; Jennifer Buxton MA, OTR/L, ATP, MEd; Peggy Dellea MS, OT/LD, MSc
Abstract:
Early discussions/documentation regarding preferences for future medical planning and late-life care, known as advance care planning (ACP), are critical. Significant barriers to ACP have been identified: role ambiguity and uncertainty, institutional barriers, clinicians questioning value of ACP, avoidance of ACP. QAgencies provide coverage only for devices that solely generate speech and neglect to cover devices that allow access to other computer functions. Study aimed to identify which virtual activities hold most importance to persons with ALS (PALS) and to evaluate facilitators and barriers to accessing virtual activities. Mixed-methods study using reflexive thematic analysis and descriptive statistics. Four patients and two caregivers engaged in semi-structured interviews. Seven out of ten virtual activities received a higher rating of importance than face-to-face communication. Facilitators to access were intrinsic motivation, caregiver support, mentorship and compensatory access skills for leisure. Barriers to access were fatigue, device novelty and communication style changes. Results highlight need to improve outcomes for PALS and cultivate the evidence needed to increase funding for these devices.
Key Words:
Access, Technology, ALS