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Direct Observation of the Behaviour of Females with Rett Syndrome

Direct Observation of the Behaviour of Females with Rett Syndrome
Direct Observation of the Behaviour of Females with Rett Syndrome
The aim was to observe the behaviour of a sample of females with RTT and explore how it was organized in relation to environmental events. Ten participants, all with a less severe form of classic (n = 9) or atypical (n = 1) Rett syndrome (RTT), were filmed at home and at school or day centre. Analysis used real-time data capture software. Observational categories distinguished engagement in social and non-social pursuits, hand stereotypies, self-injury and the receipt of attention from a parent, teacher or carer. Associations between participant behaviour and intake variables and receipt of attention were explored. Concurrent and lagged conditional probabilities between behavioural categories and receipt of attention were calculated. Receipt of adult attention was high. Engagement in activity using the hands was associated with a less severe condition and greater developmental age. Engagement in activity, whether using the hands or not, and social engagement were positively associated with receipt of support. The extent of hand stereotypies varied greatly across participants but was independent of environmental events. Six participants self-injured. There was some evidence that self-injury was related to adult attention. Participants appeared to experience a carer and attention rich environment and their levels of engagement seemed high as a result. As in the more general literature, engagement in activity was related to personal development and to social support. Self-injury contrasted with hand stereotypies in having possible environmental function.
Intellectual disabilities, Rett syndrome, observation of behaviour, activity, self-injury
1056-263X
425-441
Cianfaglione, Rina
bf9b4507-4a79-4f72-b7e2-7244b9dea9ef
Meek, Andrea
ae29f1a9-2c8f-462c-b5d8-daa2e483d785
Clarke, Angus
30f3d3dd-3caa-4465-82e8-a8c4316dfaa1
Kerr, Michael
d86f91d7-842f-4a95-b056-0923db4b1719
Hastings, Richard P.
9eed39c0-206c-4027-8b29-e7c78bfb27b7
Felce, David
b4cdedfb-100b-4c53-b01c-363606db0d19
Cianfaglione, Rina
bf9b4507-4a79-4f72-b7e2-7244b9dea9ef
Meek, Andrea
ae29f1a9-2c8f-462c-b5d8-daa2e483d785
Clarke, Angus
30f3d3dd-3caa-4465-82e8-a8c4316dfaa1
Kerr, Michael
d86f91d7-842f-4a95-b056-0923db4b1719
Hastings, Richard P.
9eed39c0-206c-4027-8b29-e7c78bfb27b7
Felce, David
b4cdedfb-100b-4c53-b01c-363606db0d19

Cianfaglione, Rina, Meek, Andrea, Clarke, Angus, Kerr, Michael, Hastings, Richard P. and Felce, David (2016) Direct Observation of the Behaviour of Females with Rett Syndrome. Journal of Developmental and Physical Disabilities, 28 (3), 425-441. (doi:10.1007/s10882-016-9478-0).

Record type: Article

Abstract

The aim was to observe the behaviour of a sample of females with RTT and explore how it was organized in relation to environmental events. Ten participants, all with a less severe form of classic (n = 9) or atypical (n = 1) Rett syndrome (RTT), were filmed at home and at school or day centre. Analysis used real-time data capture software. Observational categories distinguished engagement in social and non-social pursuits, hand stereotypies, self-injury and the receipt of attention from a parent, teacher or carer. Associations between participant behaviour and intake variables and receipt of attention were explored. Concurrent and lagged conditional probabilities between behavioural categories and receipt of attention were calculated. Receipt of adult attention was high. Engagement in activity using the hands was associated with a less severe condition and greater developmental age. Engagement in activity, whether using the hands or not, and social engagement were positively associated with receipt of support. The extent of hand stereotypies varied greatly across participants but was independent of environmental events. Six participants self-injured. There was some evidence that self-injury was related to adult attention. Participants appeared to experience a carer and attention rich environment and their levels of engagement seemed high as a result. As in the more general literature, engagement in activity was related to personal development and to social support. Self-injury contrasted with hand stereotypies in having possible environmental function.

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More information

e-pub ahead of print date: 4 March 2016
Published date: June 2016
Keywords: Intellectual disabilities, Rett syndrome, observation of behaviour, activity, self-injury

Identifiers

Local EPrints ID: 420282
URI: http://eprints.soton.ac.uk/id/eprint/420282
ISSN: 1056-263X
PURE UUID: dc059933-19d9-482c-a97c-ebab3e080891
ORCID for Rina Cianfaglione: ORCID iD orcid.org/0000-0001-8739-0598

Catalogue record

Date deposited: 03 May 2018 16:30
Last modified: 16 Mar 2024 04:29

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Contributors

Author: Andrea Meek
Author: Angus Clarke
Author: Michael Kerr
Author: Richard P. Hastings
Author: David Felce

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