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

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 regardi...

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Publicado en:Assistive Technology Vol. 33; no. 1; pp. 38 - 49
Autores principales: Ball, Laura J., Chavez, Stephen, Perez, Geovanny, Bharucha-Goebel, Diana, Smart, Kathleen, Kundrat, Katherine, Carruthers, Lauren, Brady, Caitlin, Leach, Meganne, Evans, Sally
Formato: pictorial questionnaire/scale research tables/charts Journal Article
Publicado: Taylor & Francis Ltd 2021
Acceso en línea:Ver este registro en EBSCOhost
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      pub: Taylor & Francis Ltd
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        10.1080/10400435.2019.1586788
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        atl: Communication skills among children with spinal muscular atrophy type 1: A parent survey.
      aug:
        au:
          Ball, Laura J.
          Chavez, Stephen
          Perez, Geovanny
          Bharucha-Goebel, Diana
          Smart, Kathleen
          Kundrat, Katherine
          Carruthers, Lauren
          Brady, Caitlin
          Leach, Meganne
          Evans, Sally
        affil: Center for Translational Science, Children's National Health System, Washington, DC, USA
      sug:
        subj:
          Muscular Atrophy, Spinal Classification
          Muscular Atrophy, Spinal Complications
          Communication Skills In Infancy and Childhood
          Parental Attitudes Evaluation
          Alternative and Augmentative Communication
          Children with Disabilities Psychosocial Factors
          Human
          Child
          Speech
          Assistive Technology Devices
          Financial Support
          Health Services Accessibility
          Quality of Life
          Functional Status
          Cross Sectional Studies
          Email
          Male
          Female
          Chi Square Test
          Fisher's Exact Test
          T-Tests
          Spearman's Rank Correlation Coefficient
          Mann-Whitney U Test
          Descriptive Statistics
          Socioeconomic Factors
          Speech Intelligibility
          Child: 6-12 years
          Male
          Female
      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.
      pubtype: Academic Journal
      doctype:
        pictorial
        questionnaire/scale
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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