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

Urbanowicz, Anna, Ciccone, Natalie, Girdler, Sonya, Leonard, Helen and Downs, Jenny (2017) Choice making in Rett syndrome: a descriptive study using video data. Disability And Rehabilitation, 40 7: 813-819. doi:10.1080/09638288.2016.1277392


Author Urbanowicz, Anna
Ciccone, Natalie
Girdler, Sonya
Leonard, Helen
Downs, Jenny
Title Choice making in Rett syndrome: a descriptive study using video data
Journal name Disability And Rehabilitation   Check publisher's open access policy
ISSN 0963-8288
1464-5165
Publication date 2017-01-23
Sub-type Article (original research)
DOI 10.1080/09638288.2016.1277392
Open Access Status Not yet assessed
Volume 40
Issue 7
Start page 813
End page 819
Total pages 10
Place of publication Abingdon, Oxfordshire, United Kingdom
Publisher Taylor & Francis
Language eng
Abstract To describe the choice-making abilities of girls and women with Rett syndrome.

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.

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.

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. Implications for Rehabilitation The provision of adequate time allowing for a response will promote effective choice making in girls and women with Rett syndrome. Although almost all girls and women with Rett syndrome used eye gaze to indicate their choice, communication partners also need to recognise and respond to other communication modalities that are sometimes used like body movements.
Formatted 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.

Implications for Rehabilitation: The provision of adequate time allowing for a response will promote effective choice making in girls and women with Rett syndrome.Although almost all girls and women with Rett syndrome used eye gaze to indicate their choice, communication partners also need to recognise and respond to other communication modalities that are sometimes used like body movements.
Keyword Eye gaze
Communication
MECP2
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status UQ

Document type: Journal Article
Sub-type: Article (original research)
Collections: Mater Research Institute-UQ (MRI-UQ)
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Created: Tue, 27 Jun 2017, 11:57:51 EST by Anna Urbanowicz on behalf of Qld Ctr Intellectual and Developmental Disability