Communication skills among children with spinal muscular atrophy type 1: A parent survey.

Authors:
Laura J Ball
Laura J Ball
University of Nebraska
United States
Geovanny Perez
Geovanny Perez
Children's National Medical Center
Washington | United States
Kathleen Smart
Kathleen Smart
VA Connecticut Healthcare System
United States

Assist Technol 2019 Apr 4:1-11. Epub 2019 Apr 4.

b Department of Physical Medicine and Rehabilitation, Children's National Health System , Washington DC , USA.

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.

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Source
https://www.tandfonline.com/doi/full/10.1080/10400435.2019.1
Publisher Site
http://dx.doi.org/10.1080/10400435.2019.1586788DOI Listing
April 2019
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References

(Supplied by CrossRef)
Article in Augmentative and Alternative Communication
Ball L. J. et al.
Augmentative and Alternative Communication 2010

Beukelman D. R. et al.
2013

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