Sleep Issues Among Children with Cerebral Palsy

Keeping Current © Griffith, Yundt, & Rosenbaum, 2015

Why is the Topic Important?

Sleep issues are very common throughout infancy, childhood, and pre-adolescence. Studies estimate that sleep disturbances vary from 5% to 40% among all children (Cummings, 2012; Galland, Elder, &Taylor, 2012; Mindell et al., 2006; Romeo et al., in press). A survey of Canadian parents published in 2012 reveals that “sleep issues” rank fourth among areas of concern by parents of children under the age of six. Likewise, almost 96% of parents consider “sleep issues” to be a somewhat or very important topic of discussion (Devolin et al., 2012).

Sleep issues can impact the health and development of young children in many ways, including learning and memory, mood regulation, attention, behaviour, and immune and metabolic function (Mindell et al., 2006). Likewise, effects on the child and family may impair parental mental health and contribute to parental depression, adverse family functioning and disrupted quality of life (Mindall et al., 2006; Waters, Suresh, & Nixon, 2013). The topic of sleep becomes even more relevant in the context of children with chronic health conditions like cerebral palsy (CP), as sleep issues may be exacerbated and affected by symptoms of the child’s underlying health condition.

What are ‘Sleep Issues’?

The term ‘sleep issues’ refers to disruptions in the typical bedtime and/or maintenance of sleep patterns of a child. Multiple factors play a role in sleep habits, including biology, environment and behaviour (sleeping arrangements, parenting styles), sleep-wake cycles (circadian rhythm), and brain development (Mindell et al., 2006). Common behavioural sleep issues are bedtime resistance, night-time waking, and early morning awakenings (Mindell et al., 2006; Waters, Suresh, & Nixon, 2013). Bedtime resistance is seen primarily in children aged 2 years and older and involves stalling and refusal to go to bed. Behaviours might include verbal protests, crying, attention-seeking, and repeat instances of getting out of bed (Mindell et al., 2006). Night-time waking describes children who waken during the night and cannot return to sleep independently without a caregiver’s assistance (Mindell et al., 2006).

How are sleep issues assessed?

For families who are concerned with their child’s sleep patterns, several health care screening questionnaires can be used to help identify possible sleep issues. Some examples include the Children’s Sleep Habits Questionnaire, Epworth Sleepiness Scale, Composite Sleep Disturbance Index, and BEARS questionnaire (Appleton, et al., 2013; Jan et al., 2008). If a sleep problem is identified, a further assessment will probe the child’s sleep patterns, sleep duration, sleep/ wake schedule, and environmental factors. Parents are often asked to keep a sleep diary for their child where they record daily sleep behaviours for 2 to 4 weeks (Jan et al., 2008). 

General Recommendations for Sleep Duration

Typical Sleep Patterns Although there is considerable child-to-child variation, general recommendations can be made for the required length of sleep at different ages (Waters, Suresh, & Nixon, 2013). 

Adapted from Waters, Suresh, & Nixon, 2013. 

Sleep Issues in Cerebral Palsy: Summary of the Evidence

A common misconception is that sleep issues occur more often in children with CP. However, studies show that rates of sleep disturbances in these children are actually quite similar to the general population and affect about one third of children (as cited by Galland, Elder, & Taylor, 2012). Likewise, certain aspects of CP are more frequently associated with sleep disorders, including active epilepsy, severe movement problems and level of spasticity, and intellectual disabilities (Newman, O’Regan, & Hensey, 2006; Romeo et al., in press).

Sleep issues in CP can generally be categorized into seven areas (Galland, Elder, &Taylor, 2012):

1. Breathing Disturbances – various causes

• Upper airway obstruction or mixed sleep apnea
• Swallowing difficulties

2. Movement Impairments

• Muscle spasms
• Decreased ability to change body position

3. Sleep-wake Cycles

• People with visual impairments may have delayed release of night-time melatonin, a natural hormone that plays an important role in initiating and maintaining sleep

4. Epilepsy

• Seizures often occur when children are falling asleep and waking up, or may wake a child from sleep

5. Sleep Pattern Impairments

• Disturbances in REM (rapid eye movement) sleep
• Abnormal body movements according to the stage of sleep

6. Psychological Factors

• Seen in up to 50% of children with CP compared to 15% of general population
• These may include irritability, oppositional behaviour, anxiety, low mood, over-activity and poor attention span

7. Pain & Discomfort​

• Acute and chronic pain may disturb sleep
• Use of equipment overnight (e.g., postural or orthopaedic) may cause discomfort
• Gastro-esophageal reflux (‘heart burn’)

What do we know about the topic?

The findings in this update are based on a recent systematic review by Galland, Elder, and Taylor (2012). The review investigated sleep issues faced by children aged 0-12 years with CP or following a traumatic brain injury (TBI), and considered potential strategies to manage sleep. The review’s literature search was conducted with five databases (Ovid MEDLINE, EMBASE, PsychINFO, CINAHL, and the Cochrane Database) from January 1990 to June 2011. Nineteen studies were relevant to CP and 1 for TBI. Only four studies were randomized controlled trials (RCT)*. As CP is diverse and experienced differently by each child, it may not be appropriate to generalize these findings to all types and severities of CP.

Interventions

Various studies investigated sleep and related outcomes; however no interventions/trials were specifically designed to improve sleep in children with CP. 

Below are some of the interventions found in the literature:

1. Postural needs bed…

• Three small, low quality studies showed no significant improvements in sleep quality, sleep hours, or breathing problems.

2. Adenotonsillectomy (surgery to remove tonsils) for obstructive sleep apnea (OSA)…

• All three studies showed improvements in sleep disturbances and respiratory symptoms, although the sample sizes were small and none of the studies was randomized.

3. Massage…

• One observational study showed that massage of the child improved parents’ subjective perceptions of their child’s mobility, eating, and sleep/wake durations throughout the night.

4. Baclofen (a medication for hypertonicity/ spasticity)…

• One observational study reported that parents noticed a subjective reduction in their child’s spasticity and night-time awakenings.

5. Melatonin…

• Two high quality studies (RCT and randomized blinded trial**) and one lower quality observational study have showed conflicting data. Significant improvements were seen in sleep latency and parents’ perceptions of their child’s sleep. Mixed results were noted for improvements in total time asleep and number of awakenings during the night.

6. Cranial osteopathy (gentle hand manipulation onto the skull) and/or acupuncture…

• Two studies showed no reliable improvements in total sleep times, time to fall asleep (sleep latency), or general health and wellbeing of the children with CP following these interventions

Conclusions of the review

There is little consistent evidence in the literature regarding interventions designed to improve sleep in children with CP. Likewise, the quality of studies is generally quite low along with small sample sizes. Despite the limited data, melatonin appears to be the most widely prescribed drug for sleep disturbances in children with CP. Similarly, melatonin has the most consistent reports of improved sleep latency and night waking.

*Randomized Controlled Trial (RCT): A clinical trial (human experiment) where the subjects are randomly assigned into groups in which they either receive the experimental treatment/procedure (e.g., receive a real drug) or serve as controls (e.g., receive a placebo [a ‘dummy’ treatment like a sugar pill]) (definition adapted from Merriam-Webster Online)

**A blinded trial: A clinical trial made or performed with the subjects and/or experimenters having no knowledge or information that may cause bias during the process of the experiment (e.g., not knowing if they are receiving a real drug vs. a placebo) (definition adapted from Merriam-Webster Online

First Line Treatment for Sleep Issues: Sleep Hygiene

“Sleep hygiene” refers to sleep-related behaviours, habits and activities that promote effective sleep. Although not directly assessed within the Galland et al. review (2012), first line treatment for sleep disturbances in adults and children is to improve sleep hygiene (Cummings, 2012; Jan et al., 2008).

Sleep hygiene can be divided into four categories (Jan et al., 2008):

1. Environment

• Bedding
• Bedroom temperature
• Noise level in bedroom
• Ambient light

2. Scheduling

• Regular bedtime
• Regular wake time

3. Sleep practices

• Regular bedtime routines (quiet bath, familiar blanket)
• Avoid routines that depend solely on the caregiver (e.g., rocking child to sleep each night) as they will discourage the child from learning to fall asleep alone if they awaken during the night (i.e., to “self-soothe”)

4. Physiologic (body-related)

• Calming activities at night rather than vigorous exercise
• Light snack before bed
• Reduce caffeine use at night

While not fully understood, it is thought that good sleep hygiene works by training the body’s sleep/ wake cycles (circadian rhythm) with certain behaviours and activities. Likewise, it promotes sleep by reducing environmental stimulation and bedtime anxiety while enhancing relaxation.

Key Messages

• Sleep issues are common in children both with and without CP.
• Sleep disturbances have significant impact on children, parents, and families.
• Very few high quality studies exist to investigate sleep solutions among children with CP.
• Sleep hygiene is the first line treatment for sleep issues in all children.
• Melatonin appears to be the most widely prescribed medication for sleep issues in children with CP.
• Research with children with neurodisabilities (like CP) suggests that melatonin is effective in helping children fall asleep earlier, although they gain very little extra total night-time sleep.
• Other medications, such as sedatives and hypnotics, are available for children with sleep issues; however further research trials are needed to assess their efficacy and safety. 

Interested in Reading More?

McMaster Children’s Hospital: Helping your family sleep better

Canadian Pediatric Society: Melatonin for the management of sleep disorders in children and adolescents

Cerebra

Scope: Sleep Problems and Disabled Children

Seattle Children’s Hospital: Sleep Hygiene for Children

Sleep Right

Want to know more?

For questions about this Keeping Current, please contact Dr. Peter Rosenbaum at rosenbau@mcmaster.ca 

This Keeping Current was developed as part of the Ontario Brain Institute initiative CP-NET (www.cp-net.org)

Acknowledgements

We would like to thank the following people for their assistance in the development of this Keeping Current: Dayle McCauley and Yash Patel. Special thanks to Susan McCoy, Kathy Fruck, & Golda Milo-Manson for critically reviewing this document.