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Sleep in children with Angelman syndrome: Parental concerns and priorities

journal contribution
posted on 19.04.2018, 12:31 by Jayne Trickett, Mary Heald, Chris Oliver
Angelman syndrome is a rare genetic syndrome, in which sleep disturbances are reported for 20–80% of individuals (Williams et al., 2006). This interview study delineated parental perceptions of sleep problems experienced by children with Angelman syndrome and the impact on parental sleep quality, health and wellbeing. The nature of desired interventions was also explored. Semi-structured interviews were completed with parents of 50 children, aged 16 months–15 years with Angelman syndrome who experienced current or historic sleep problems; predominantly night waking and settling problems. Parents were concerned by the impact of their child’s sleep quality upon their own ability to function during the day. The importance of considering parental experiences was evidenced by variability in coping e.g. despite the persistence of sleep problems 20% of parents did not feel the need for any additional support. Amongst a range of types of further support desired, 27% cited further support with a behavioural intervention, and information about the trajectory of sleep problems in Angelman syndrome (18%). The results suggest that behavioural interventions supporting both children and parents in improving their sleep quality and well-being, and longitudinal research into sleep problems should be prioritised.

History

Citation

Research in Developmental Disabilities, 2017, 69, pp. 105-115

Author affiliation

/Organisation/COLLEGE OF LIFE SCIENCES/School of Medicine/Department of Health Sciences

Version

AM (Accepted Manuscript)

Published in

Research in Developmental Disabilities

Publisher

Elsevier

issn

0891-4222

Acceptance date

24/07/2017

Copyright date

2017

Available date

30/08/2019

Publisher version

https://www.sciencedirect.com/science/article/pii/S0891422217301907?via=ihub

Notes

The file associated with this record is under embargo until 24 months after publication, in accordance with the publisher's self-archiving policy. The full text may be available through the publisher links provided above.

Language

en

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