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

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.

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

Acknowledgments

The authors gratefully acknowledge the contribution of the parents with a daughter with Rett syndrome and thank them for participating in this study. The authors also thank Dr Greg Maguire, Research Writing Consultant, for his assistance in editing this manuscript.

Declaration of interest

The authors acknowledge the funding support of the Australian Postgraduate Award, the Stan and Jean Perron Scholarship, the National Institute of Health and the NHMRC. The Australian Rett Syndrome Research Program is currently supported by a NHMRC project grant (#1004384) and a NHMRC program grant (#572742). Professor Helen Leonard’s current funding is from an NHMRC Senior Research Fellowship (#572568).

The authors report no conflicts of interest.