Choice making in Rett syndrome: a descriptive study using video data
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 a...
| Main Authors: | , , , , |
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| Format: | Journal Article |
| Published: |
Informa Healthcare
2018
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| Online Access: | http://hdl.handle.net/20.500.11937/50198 |
| _version_ | 1848758419211681792 |
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| author | Urbanowicz, A. Ciccone, N. Girdler, Sonya Leonard, H. Downs, Jennepher |
| author_facet | Urbanowicz, A. Ciccone, N. Girdler, Sonya Leonard, H. Downs, Jennepher |
| author_sort | Urbanowicz, A. |
| building | Curtin Institutional Repository |
| collection | Online Access |
| description | 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. |
| first_indexed | 2025-11-14T09:43:41Z |
| format | Journal Article |
| id | curtin-20.500.11937-50198 |
| institution | Curtin University Malaysia |
| institution_category | Local University |
| last_indexed | 2025-11-14T09:43:41Z |
| publishDate | 2018 |
| publisher | Informa Healthcare |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | curtin-20.500.11937-501982018-01-25T01:54:44Z Choice making in Rett syndrome: a descriptive study using video data Urbanowicz, A. Ciccone, N. Girdler, Sonya Leonard, H. Downs, Jennepher 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. 2018 Journal Article http://hdl.handle.net/20.500.11937/50198 10.1080/09638288.2016.1277392 Informa Healthcare fulltext |
| spellingShingle | Urbanowicz, A. Ciccone, N. Girdler, Sonya Leonard, H. Downs, Jennepher Choice making in Rett syndrome: a descriptive study using video data |
| title | Choice making in Rett syndrome: a descriptive study using video data |
| title_full | Choice making in Rett syndrome: a descriptive study using video data |
| title_fullStr | Choice making in Rett syndrome: a descriptive study using video data |
| title_full_unstemmed | Choice making in Rett syndrome: a descriptive study using video data |
| title_short | Choice making in Rett syndrome: a descriptive study using video data |
| title_sort | choice making in rett syndrome: a descriptive study using video data |
| url | http://hdl.handle.net/20.500.11937/50198 |