Sleep Problems in Children with Autism Spectrum Disorders: Impact on Caregiver Quality of Life.

Background:

Children with autism spectrum disorder (ASD) frequently experience sleep problems, with previous research indicating prevalence rates of between 50 to 80%. Due to the negative impact of prolonged sleep problems on developmental outcomes and general health and wellbeing, this is a major cause for concern. Research suggests that sleep problems in children with ASD also have a wider negative impact on their caregivers, particularly in relation to parent stress. The relationship to the phenomenon of parent quality of life (QOL) however has not been explored; despite literature finding associations between parental QOL and behavioural problems in children with ASD, the impact of child sleep has not been explicitly investigated.

Objectives:

The study aimed to establish a profile of sleep problems in children with ASD in a Western Australian population, and subsequently examine the relationship between sleep problems in children with ASD and parent QOL, with consideration of the impact of other child factors.

Methods:

A cross-sectional survey was conducted with 204 caregivers of 219 children with ASD aged 2-18 years living in Western Australia, with data collected over an 18-month period from January 2015-July 2016. Outcome measures were all parent-reported and included the Children’s Sleep Habits Questionnaire (CSHQ), World Health Organisation Quality of Life (WHOQOL) - BREF version, the DSM-IV-TR/ICD-10 checklist of ASD diagnostic criteria, and general demographic questions. A sleep profile was generated based on established ‘cut offs’ indicative of clinically significant sleep problems. General linear modelling was conducted to examine the presence of a relationship between parent QOL and child factors, including sleep problems.

Results:

Results from the CSHQ indicated that over 85% of the children experience clinically significant sleep problems. Key areas of concern were poor sleep duration, sleep onset delay, night wakings and parasomnias. Sleep problems were found to be significant predictors for two of the three QOL domains. Sleep-disordered breathing, daytime sleepiness and sleep duration were found to be predictors of poorer parental physical QOL, while bedtime resistance predicted poorer social relationships QOL. Sleep was not a significant predictor of parent psychological QOL. Other significant child factors included communication difficulties, sensitivity to sensory input, behaviours relating to distress over environmental change, and taking melatonin supplements (a common sleep intervention). Factors of child age, gender, diagnosis, and presence of other co-morbidities were not significant predictors.

Conclusions:

Findings confirm the high presence of sleep problems in a sample of Western Australian children with ASD, highlighting the need for greater clinical attention including assessment and intervention of sleep problems in this population. The presence of significant relationships between child sleep problems and parent QOL demonstrates the significant negative impact these problems have, not only on the child, but on their caregivers. This emphasises the need to consider the family as a unit in paediatric clinical practice, and draws attention to the need for recommendations to be considered on the basis of effectiveness for the child, as well as whole-of-family feasibility and ‘fit’.