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Parent Report of Potential Communicative Acts in Individuals with CHARGE Syndrome

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This session will present findings from a research study conducted with families (n=27) of children / young adults who experience CHARGE syndrome.

Research AIMS
1. to describe nonintentional and intentional prelinguistic communication abilities
2. to collect information regarding augmentative communication experiences of a sample of children / young adults with CHARGE syndrome, who have little to no conventional speech

METHOD
Family members participated in face-to-face interviews regarding their children’s use of potential communicative acts and the utility of those signals for conveying meaning (children aged: 17 months – 28 years). Eligibility criterion: the child with CHARGE was required to be 29 years of age or younger, and to use fewer than 50 functional spoken words / manual signs. Primary data were collected through the administration of a developmental history form and the Inventory of Potential Communicative Acts (IPCA).

RESULTS
All reported potential communicative acts reported were coded and categorized for each participant child, according to both form and perceived communicative function. Patterns of form and function use were compared across participants for commonalities and compared with developmental milestones. Family members’ anecdotal comments regarding their child’s communication abilities were analyzed using qualitative research procedures. History of exposure to / experience with AAC systems was compiled across the sample.

CONCLUSION
Results of this investigation should inform families, teachers, and clinicians of the wide range of communicative functions fulfilled through the potential communication acts of learners who experience CHARGE syndrome, as well as highlight the need for appropriate AAC instruction with this group.

Author(s):

Susan Bashinski    
Missouri Western State University
United States

Barbara Braddock    
St. Louis University
United States

Clarissa Huffman    
Missouri Western State University
United States

Jennifer Heithaus    
St. Louis University School of Medicine
United States

 

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