These resources include the best available evidence about the course of Rett syndrome and its management as well as practical information about family associations, specialist clinical centres and links to relevant websites.
Parental perspectives on the communication abilities of their daughters with Rett syndrome
Urbanowicz A, Leonard H, Girdler S, Ciccone N, Downs J. Parental perspectives on the communication abilities of their daughters with Rett syndrome. Developmental Neurorehabilitation, Early Online. 2014:1-9.
Girls and women with Rett syndrome find it difficult to communicate using typical methods such as talking. It is thought that girls and women communicate in other ways using eye gaze, vocalisations and body movements. However there is a lack of information about these communication methods and the factors that may make it easier or harder for people with Rett syndrome to communicate.
What we did
We interviewed 17 parents with a daughter with Rett syndrome to gain their perspectives on the following questions: (1) How do females with Rett syndrome communicate in everyday life? and (2) What factors acts as barriers or facilitators to successful communication? Interviews were recorded and transcribed word for word. Information from the interviews was categorised under the following headings: expressive communication abilities, receptive communication abilities and factors influencing communication.
What we found
Parents believed that their daughter engaged in meaningful interactions with others including family members, peers and professionals. A number of factors impacted on the success of their daughter's communication. These factors included mood, hand skills and mobility, the presence of motivating activities relating to music and food, and the characteristics of the communication partner.
What it means
Assessment of communication in those with Rett syndrome needs to consider parental perspectives and the factors parents identify as being barriers or facilitators to successful communication.
For further reports and findings, see our publications list.