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    Choice making in Rett syndrome: a descriptive study using video data

    249951.pdf (1.013Mb)
    Access Status
    Open access
    Authors
    Urbanowicz, A.
    Ciccone, N.
    Girdler, Sonya
    Leonard, H.
    Downs, Jennepher
    Date
    2018
    Type
    Journal Article
    
    Metadata
    Show full item record
    Citation
    Urbanowicz, A. and Ciccone, N. and Girdler, S. and Leonard, H. and Downs, J. 2018. Choice making in Rett syndrome: a descriptive study using video data. Disability and Rehabilitation. 40 (7): pp. 813-819.
    Source Title
    Disability and Rehabilitation
    DOI
    10.1080/09638288.2016.1277392
    ISSN
    0963-8288
    School
    School of Occupational Therapy and Social Work
    URI
    http://hdl.handle.net/20.500.11937/50198
    Collection
    • Curtin Research Publications
    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.

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