Format

Send to

Choose Destination
Dev Neurorehabil. 2016;19(1):17-25. doi: 10.3109/17518423.2013.879940. Epub 2014 Feb 24.

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

Author information

1
a Telethon Institute for Child Health Research, The University of Western Australia , Perth , WA , Australia .
2
b School of Exercise and Health Sciences, Edith Cowan University , Perth , WA , Australia .
3
c School of Occupational Therapy and Social Work, Centre for Research into Disability and Society, Curtin University , Perth , WA , Australia .
4
d School of Psychology and Social Science, Edith Cowan University , Perth , WA , Australia , and.
5
e School of Physiotherapy and Exercise Science, Curtin University , Perth , WA , Australia.

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.

KEYWORDS:

Expressive communication; International Classification of Functioning; intellectual disability; receptive communication

PMID:
24564222
DOI:
10.3109/17518423.2013.879940
[Indexed for MEDLINE]

Supplemental Content

Full text links

Icon for Taylor & Francis
Loading ...
Support Center