Choice making in Rett syndrome: A descriptive study using video data
Abstract
Purpose: To describe the choice-making abilities of girls and women with Rett syndrome.
Method: Females with Rett syndrome registered with the Australian Rett Syndrome Database with a pathogenic MECP2 mutation were included in this study. Video clips showing choice making in 64 females at a median age of 11.6 years (range 2.3 – 35.6 years) were analysed. Video clips were coded for the location and nature of the choice-making interaction, and the actions of the communication partner and female with Rett syndrome.
Results: The majority (82.8%, 53/64) of females made a choice, most using eye gaze. Just under half (24/ 53) used one modality to communicate their choice, 52.8% used two modalities and one used three modalities. Of those who made a choice, 50% did so within 8 s. The length of time to make a choice did not appear to vary with age. During choice making, 57.8% (37/64) of communication partners used language and gestures, 39.1% (25/64) used only language and two used language, gestures and symbols within the interaction. Conclusions: The provision of adequate time allowing for a response and observation for the use of multiple modalities could promote effective choice making in females with Rett syndrome
Document Type
Journal Article
Date of Publication
2018
Publication Title
Disability and Rehabilitation
Publisher
Taylor & Francis Inc.
School
School of Medical and Health Sciences
RAS ID
23436
Copyright
subscription content
Comments
Article Urbanowicz, A., Ciccone, N., Girdler, S., Leonard, H., & Jenny Downs (2018): Choice making in Rett syndrome: A descriptive study using video data, Disability and Rehabilitation, 40(7), 813-819. doi: 10.1080/09638288.2016.1277392 Available here