Parental perspectives on the communication abilities of their daughters with Rett syndrome

Urbanowicz, Anna, Leonard, Helen, Girdler, Sonya, Ciccone, Natalie and Downs, Jenny (2016) Parental perspectives on the communication abilities of their daughters with Rett syndrome. Developmental Neurorehabilitation, 19 1: 17-25. doi:10.3109/17518423.2013.879940


Author Urbanowicz, Anna
Leonard, Helen
Girdler, Sonya
Ciccone, Natalie
Downs, Jenny
Title Parental perspectives on the communication abilities of their daughters with Rett syndrome
Journal name Developmental Neurorehabilitation   Check publisher's open access policy
ISSN 1751-8431
1751-8423
Publication date 2016-01
Year available 2014
Sub-type Critical review of research, literature review, critical commentary
DOI 10.3109/17518423.2013.879940
Open Access Status Not Open Access
Volume 19
Issue 1
Start page 17
End page 25
Total pages 9
Place of publication Abingdon, Oxfordshire, United Kingdom
Publisher Taylor & Francis
Collection year 2017
Language eng
Formatted abstract
Objective: This study describes, from the perspective of parents, how females with Rett syndrome communicate in everyday life and the barriers and facilitators to successful communication.

Methods: Sixteen interviews were conducted with parents with a daughter with Rett syndrome with a pathogenic mutation in the methyl-CpG-binding protein 2 gene. Interviews were recorded and transcribed verbatim. Transcripts were analysed using directed content analysis.

Results: All parents reported their daughters were able to express discomfort and pleasure, and make requests and choices using a variety of modalities including vocalisations, body movements and eye gaze. Parents also reported their daughters understood most of what they said and that the level of functional abilities, such as mobility, and environmental factors, such as characteristics of the communication partner, influenced successful communication.

Conclusions: The perspectives of parents are integral to the assessment of communication abilities and have the potential to inform communication interventions for girls and women with Rett syndrome.
Keyword Expressive communication
Intellectual disability
International classification of functioning
Receptive communication
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status Non-UQ

Document type: Journal Article
Sub-type: Critical review of research, literature review, critical commentary
Collections: HERDC Pre-Audit
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