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Communication in Young Children with Fragile X Syndrome: A Qualitative Study of Mothers’ Perspectives
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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. ; NIH P30 HD003110-38S1 ; NIH P30 HD02528
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Keyword:
Communication disorders; Fragile X; Parents; Preschool children; Qualitative research analysis
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URL: http://hdl.handle.net/1808/30795
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Longitudinal Profiles of Expressive Vocabulary, Syntax, and Pragmatic Language in Boys with Fragile X Syndrome or Down Syndrome ...
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Massachusetts Early Care and Education and School Readiness Study, 2001-2008 ... : Version 1 ...
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Massachusetts Early Care and Education and School Readiness Study, 2001-2008 ... : Archival Version ...
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Cognitive, Environmental, and Linguistic Predictors of Syntax in Fragile X Syndrome and Down Syndrome ...
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Cognitive, Environmental, and Linguistic Predictors of Syntax in Fragile X Syndrome and Down Syndrome
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Phonological Accuracy and Intelligibility in Connected Speech of Boys With Fragile X Syndrome or Down Syndrome ...
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Phonological Accuracy and Intelligibility in Connected Speech of Boys with Fragile X Syndrome or Down Syndrome
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In: Speech Pathology and Audiology Faculty Research and Publications (2009)
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Phonological Accuracy and Intelligibility in Connected Speech of Boys with Fragile X Syndrome or Down Syndrome
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Phonological Accuracy and Intelligibility in Connected Speech of Boys With Fragile X Syndrome or Down Syndrome
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In: Faculty Publications (2009)
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