Telepractice SGD services for people with ALS (Roman et al., 2021)
journal contributionposted on 2021-08-19, 23:03 authored by Amy Roman, Carolyn Baylor, Lindsay Johnson, Maya Barton
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 S1. Pre-evaluation questionnaire.
Supplemental Material S2. Postevaluation open-ended interview questions.
Supplemental Material S3. Posttraining open-ended interview questions.
Roman, A. Baylor, C., Johnson, L., & Barton, M. (2021). Expanding availability of speech-generating device evaluation and treatment to people with amyotrophic lateral sclerosis (pALS) through telepractice: Perspectives of pALS and communication partners. American Journal of Speech-Language Pathology. Advance online publication. https://doi.org/10.1044/2021_AJSLP-20-00334
Ability Central Philanthropy
speechspeech-generating deviceSGDamyotrophic lateral sclerosisALStelepracticecommunicationperspectivespartnerexperienceevaluationtreatmentaugmentative and alternative communicationAACinterviewtrainingratingservicespecialistaccessmobilityendurancecaregiveravailabilityoptionremoteassessmenttelemedicineCommunication StudiesCommunication Technology and Digital Media StudiesNeurology and Neuromuscular Diseases