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    Communication in Young Children with Fragile X Syndrome: A Qualitative Study of Mothers’ Perspectives

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    Issue Date
    2006-11-01
    Author
    Brady, Nancy C.
    Skinner, Debra
    Roberts, Joanne
    Hennon, Elizabeth
    Publisher
    American Speech-Language-Hearing Association
    Type
    Article
    Article Version
    Scholarly/refereed, author accepted manuscript
    Rights
    Copyright © 2006 American Speech-Language-Hearing Association
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    Abstract
    Purpose: The purposes of the study were to provide descriptive and qualitative information about communication in young children with fragile X syndrome (FXS) and about how families react to and accommodate communication differences in their children.

    Method: In-depth interviews were conducted with 55 mothers of young children with FXS. Interviewers asked mothers to describe their children’s communication, strategies they used to help promote their children’s communication, communication-related frustrations, their expectations for their children and the roles that they perceive for themselves.

    Results: Over half the children were nonverbal and learning to communicate with augmentative or alternative communication (AAC). Mothers reported using strategies that were developmentally appropriate and recommended by early childhood experts, such as reading and talking to their children. Many mothers identified challenges faced in helping their child to communicate, and some cited difficulty obtaining speech-language services as a challenge. Mothers identified their roles as caregiver, teacher, therapist and advocate.

    Conclusions: The perspectives offered by mothers are valuable because they indicate how children with FXS communicate in natural contexts. Information about mothers’ expectations and roles may help clinicians to be sensitive to variables that will impact working with young children and their families.
    URI
    http://hdl.handle.net/1808/30795
    DOI
    https://doi.org/10.1044/1058-0360(2006/033)
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    • Speech-Language-Hearing Scholarly Works [81]
    Citation
    Brady, N., Skinner, D., Roberts, J., & Hennon, E. (2006). Communication in young children with fragile X syndrome: a qualitative study of mothers' perspectives. American journal of speech-language pathology, 15(4), 353–364. https://doi.org/10.1044/1058-0360(2006/033)

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    KU Libraries
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    785-864-8983

    KU Libraries
    1425 Jayhawk Blvd
    Lawrence, KS 66045
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    Contact KU ScholarWorks
    785-864-8983
    KU Libraries
    1425 Jayhawk Blvd
    Lawrence, KS 66045
    785-864-8983

    KU Libraries
    1425 Jayhawk Blvd
    Lawrence, KS 66045
    Image Credits
     

     

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