Sleep Disturbance in Children with Rett Syndrome: A Qualitative Investigation of the Parental Experience

Background  Sleep problems in children with intellectual disability can be precipitated and maintained by intrinsic and external factors. The present study comprised a qualitative investigation of the experiences of parents of children with Rett syndrome, a neurodevelopmental disorder where sleep di...

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Bibliographic Details
Published in:Journal of applied research in intellectual disabilities 2005-09, Vol.18 (3), p.201-215
Main Authors: McDougall, Allyson, Kerr, Alison M., Espie, Colin A.
Format: Article
Language:English
Subjects:
Child Rearing
Children
Coping
Emotional Response
Genetic Disorders
Intellectual disabilities
Interviews
Investigations
Mental Retardation
Neurodevelopmental disorders
Neurological Impairments
Parent Attitudes
Parents
qualitative
Rett syndrome
Sleep
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Summary:Background  Sleep problems in children with intellectual disability can be precipitated and maintained by intrinsic and external factors. The present study comprised a qualitative investigation of the experiences of parents of children with Rett syndrome, a neurodevelopmental disorder where sleep disturbance is common. Method  Audio‐taped interviews were conducted with nine families. Transcripts were analysed by theoretical coding to develop categories and themes, facilitated by the computer package qsr nud*ist. Results  Themes and sub‐themes were identified in the areas of (1) parents’ beliefs about sleep problems, (2) coping with sleep problems, and (3) emotions, and an interactional model of the three systems was suggested. Conclusions  A proposed interactional model of parental beliefs, coping and emotions in relation to sleep disturbance in children with Rett syndrome is consistent with existing theoretical models. Further research is required to test out the applicability of this conceptual framework to parents of children with other aetiologies of intellectual disability.
ISSN:1360-2322
1468-3148
DOI:10.1111/j.1468-3148.2005.00220.x