Research  |   November 2006
Communication in Young Children With Fragile X Syndrome: A Qualitative Study of Mothers' Perspectives
 
Author Affiliations & Notes
  • Nancy Brady
    University of Kansas, Lawrence
  • Debra Skinner
    University of North Carolina, Chapel Hill
  • Joanne Roberts
    University of North Carolina, Chapel Hill
  • Elizabeth Hennon
    University of North Carolina, Chapel Hill
  • Contact author: Nancy C. Brady, University of Kansas, 1052 Dole, 1000 Sunnyside Drive, Lawrence, KS 66045. E-mail: nbrady@ku.edu.
  • Elizabeth Hennon is now affiliated with University of Evansville, Evansville, IN.
    Elizabeth Hennon is now affiliated with University of Evansville, Evansville, IN.×
Article Information
Research   |   November 2006
Communication in Young Children With Fragile X Syndrome: A Qualitative Study of Mothers' Perspectives
American Journal of Speech-Language Pathology, November 2006, Vol. 15, 353-364. doi:10.1044/1058-0360(2006/033)
History: Received October 10, 2005 , Revised January 13, 2006 , Accepted April 23, 2006
 
American Journal of Speech-Language Pathology, November 2006, Vol. 15, 353-364. doi:10.1044/1058-0360(2006/033)
History: Received October 10, 2005; Revised January 13, 2006; Accepted April 23, 2006
Web of Science® Times Cited: 13

Purpose: 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 and alternative communication. 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 affect working with young children and their families.

Acknowledgments
Funding for this research was provided by National Institutes of Health Grants P30 HD003110-38S1 and P30 HD02528. We wish to thank the dedicated staff who interviewed the parents and transcribed interviews, students who coded the transcripts, and most importantly the families who participated in this research.
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