Expanding Availability of Speech-Generating Device Evaluation and Treatment to People With Amyotrophic Lateral Sclerosis (pALS) Through Telepractice: Perspectives of pALS and Communication Partners

Author:

Roman Amy1ORCID,Baylor Carolyn2ORCID,Johnson Lindsay3,Barton Maya3

Affiliation:

1. Forbes Norris ALS Research and Treatment Center, San Francisco, CA

2. Department of Rehabilitation Medicine, University of Washington, Seattle

3. Department of Speech, Language and Hearing Sciences, San Francisco State University, CA

Abstract

Purpose To examine the experiences of people with ALS (pALS) and their communication partners (cALS) regarding receiving speech-generating device (SGD) evaluation and treatment via telepractice. Method Eight pALS along with a primary cALS participated in telepractice SGD evaluation and treatment with an augmentative and alternative communication (AAC) specialist and representatives from multiple SGD vendors. Participants were interviewed postevaluation and post-SGD training to examine their experiences. Mixed methods data were collected through Likert scale responses and qualitative interviews. Results Telepractice SGD evaluation and training were feasible and resulted in all pALS receiving SGDs they were able to use to communicate. In both Likert rating items and qualitative interviews, participants rated the telepractice experience very highly in terms of giving them access to AAC services via an AAC specialist that they would not have otherwise been able to access, and doing so in a format that was possible given their limitations in mobility, endurance, and caregiver availability. Suggestions for improving the telepractice experience were provided. Conclusions Telepractice should be considered as an option to provide vital SGD services to patients who are geographically remote, mobility impaired, unable to leave their home, experience fatigue with travel, or otherwise would not have access to these specialized services. Telepractice allows patients to preserve their time and energy for the assessment and treatment sessions, resulting in perhaps deeper and more frequent engagement in evaluation and training. Telepractice could serve as an alternative to outpatient, in-person evaluations, or be utilized in conjunction with in-person appointments. Supplemental Material https://doi.org/10.23641/asha.15094257

Publisher

American Speech Language Hearing Association

Subject

Speech and Hearing,Linguistics and Language,Developmental and Educational Psychology,Otorhinolaryngology

Reference78 articles.

1. Abrahams S. & Bak T. (2013). Edinburgh Cognitive and Behavioural ALS Screen—ECAS English Version 2013. Edinburgh Research Archive The University of Edinburgh. https://era.ed.ac.uk/handle/1842/6592

2. Barriers and Facilitators That Influence Telemedicine-Based, Real-Time, Online Consultation at Patients’ Homes: Systematic Literature Review

3. American Speech-Language-Hearing Association. (2020). Telepractice: Overview & resources. https://www.asha.org/practice-portal/professional-issues/telepractice/

4. American Speech-Language-Hearing Association. (2021). Providing telehealth services under Medicare during the COVID-19 pandemic. https://www.asha.org/practice/reimbursement/medicare/providing-telehealth-services-under-medicare-during-the-covid-19-pandemic/

5. Alternative service delivery models for families with a new speech generating device: Perspectives of parents and therapists

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