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...
| Publicado en: | Assistive Technology Vol. 33; no. 1; pp. 38 - 49 |
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| Autores principales: | , , , , , , , , , |
| Formato: | pictorial questionnaire/scale research tables/charts Journal Article |
| Publicado: |
Taylor & Francis Ltd
2021
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=148721910&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 148721910 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10400435 YVP jtl: Assistive Technology issn: 10400435 maglogo: Y pubinfo: dt: 2021 vid: 33 iid: 1 pid: 377 pub: Taylor & Francis Ltd place: Philadelphia, Pennsylvania artinfo: ui: 148721910 148721910 148721910 10.1080/10400435.2019.1586788 148721910 ppf: 38 ppct: 11 formats: fmt: – @attributes: type: T – @attributes: type: P tig: 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 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 refInfo: holdings: @attributes: islocal: N |
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