TY - JOUR
T1 - Communication skills among children with spinal muscular atrophy type 1
T2 - A parent survey
AU - Ball, Laura J.
AU - Chavez, Stephen
AU - Perez, Geovanny
AU - Bharucha-Goebel, Diana
AU - Smart, Kathleen
AU - Kundrat, Katherine
AU - Carruthers, Lauren
AU - Brady, Caitlin
AU - Leach, Meganne
AU - Evans, Sally
N1 - Publisher Copyright:
© 2019 RESNA.
PY - 2021
Y1 - 2021
N2 - Spinal muscular atrophy is one of the most common fatal autosomal recessive disorders. Children diagnosed with SMA Type 1 (SMAT1) demonstrate severe oral motor weakness and flaccid dysarthria progressing to complete anarthria. A review of literature illustrates that little has been described regarding augmentative and alternative communication (AAC) use among these children, although communication has a critical impact on quality of life and participation in daily activities. Responses to an investigator-developed parent survey were obtained to appraise communication skills and opportunities among children diagnosed with SMA1. Results illustrate parent perception of greater receptive than expressive language ability and highlight the benefits of implementing speech-generating devices (SGD). Barriers to SGD acquisition and implementation, including access and funding, are reported and described. Overall, families indicated that SGD increases quality of life and provides valued improvements through expanded functional communication.
AB - Spinal muscular atrophy is one of the most common fatal autosomal recessive disorders. Children diagnosed with SMA Type 1 (SMAT1) demonstrate severe oral motor weakness and flaccid dysarthria progressing to complete anarthria. A review of literature illustrates that little has been described regarding augmentative and alternative communication (AAC) use among these children, although communication has a critical impact on quality of life and participation in daily activities. Responses to an investigator-developed parent survey were obtained to appraise communication skills and opportunities among children diagnosed with SMA1. Results illustrate parent perception of greater receptive than expressive language ability and highlight the benefits of implementing speech-generating devices (SGD). Barriers to SGD acquisition and implementation, including access and funding, are reported and described. Overall, families indicated that SGD increases quality of life and provides valued improvements through expanded functional communication.
KW - Access
KW - assistive technology
KW - augmentative and alternative communication
KW - funding
KW - speech generating device
KW - spinal muscular atrophy
KW - survey
UR - http://www.scopus.com/inward/record.url?scp=85063912605&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85063912605&partnerID=8YFLogxK
U2 - 10.1080/10400435.2019.1586788
DO - 10.1080/10400435.2019.1586788
M3 - Article
C2 - 30945993
AN - SCOPUS:85063912605
SN - 1040-0435
VL - 33
SP - 38
EP - 48
JO - Assistive Technology
JF - Assistive Technology
IS - 1
ER -