Learning Objectives: After participating in this continuing professional development activity, the provider should be better able to:
- Describe the importance of sleep hygiene for pediatric patients with chronic pain.
- Identify 2 assessment approaches used to evaluate sleep.
- Discuss at least 2 interventions to support pediatric patients with chronic pain and sleep challenges.
Chronic pain, defined as recurrent or persistent pain lasting more than 3 months, is a prevalent condition among children and adolescents with capacity for significant effects on overall functioning and quality of life. Estimated prevalence of chronic pain in US children and adolescents ranges between 6% and 38% and a major proportion will continue to struggle with chronic pain in adulthood.1
Annual costs of chronic pain among American youth are estimated to be $11.8 billion, exceeding the costs of other major chronic conditions, including pediatric asthma and obesity.2 When attempting to promote pain management, attention must be devoted to different behavioral, psychological, and physiological factors that may serve to promote or inhibit pain coping.
Sleep is one important health habit to review when addressing quality of life in children with pain. This article briefly reviews the relationship between pain and sleep and provides assessment and intervention approaches that can be incorporated into practice.
Pediatric Pain and Sleep: Definitions and the Biopsychosocial Framework
Approaches to pain management and pain coping in pediatric patients will often attend to the biological (eg, general health status), psychological (eg, coping capacity and mood experience), and social (eg, environmental influences and family culture) influences on an individual's life. Such factors can be observed as having the capacity to dampen or intensify an individual's pain experience, or “modulate” pain signals at the spinal cord, as is presented by the gate control theory of pain.3
Within the gate control theory of pain, influence of different health behaviors and biopsychosocial factors is explored as having the potential to inhibit or “close” one's pain gate or to facilitate or “open” one's pain gate. When considering different behaviors, sleep is observed as a possible pain gate “opener” and “closer,” particularly given the indication that pediatric patients with chronic pain have poorer sleep than do their healthy peers,4 with reports that approximately half of pediatric patients with pain experience disturbed sleep.5
In this article, the term “sleep disruption” refers to difficulty falling and staying asleep, poor sleep hygiene, poor sleep quality, and poor sleep quantity.
The relationship between pain and sleep is proposed as bidirectional in nature with poor sleep influencing a patient's pain perception the following day (ie, a gate opener) and increased pain influencing sleep quality and quantity the following night.4 In other words, poor sleep reduces the body's ability to inhibit pain through normal descending pain inhibitory pathways, and it opens the gate to increased pain signaling. In turn, this sets up a vicious cycle of bidirectional poor sleep and poor pain control. However, in other research, the relationship between pain and sleep has been described as more unidirectional in nature, with proposal that poor sleep is more predictive of pain than pain is of poor sleep.6,7
In addition, poor sleep has been linked with other comorbid symptoms in youth with chronic pain, including symptoms of posttraumatic stress disorder (PTSD) and depression.
In a study evaluating the mediating role of sleep among youth ages 10 to 17 years with chronic pain on the relationship between symptoms of PTSD and pain (n = 97), it was shown that sleep quality partially mediated the relationship.8 Specifically, poor sleep quality partially explained the linkage between higher symptom levels of PTSD and higher levels of pain severity and pain interference.
A recent literature review demonstrated evidence that the prevalence of depression in youth with chronic pain involves key mutually maintaining factors including neurobiological, intrapersonal, and interpersonal factors.9 Intrapersonal factors include cognitive biases, sleep disturbances, emotion regulation, and behavioral inactivation, whereas interpersonal factors include parenting behaviors and parent mental health.
In these models of pediatric chronic pain, sleep disturbances are viewed as a precondition or vulnerability to chronic pain that may worsen pain severity and interference once it occurs. In a study with 147 youths 8 to 18 years old with chronic pain, it was found that anxiety and depressive symptoms mediated the relationship between poor sleep quality and increased pain severity and interference.10
These studies support the need for assessment and treatment of pain and comorbid symptoms, including sleep disturbances, as a holistic approach to pain management. As such, interventions that aim to promote good sleep hygiene, ease of falling asleep, and capacity to stay asleep have been reviewed in this article. All interventions discussed here are behavioral in nature, rather than medical or pharmacological, as there is evidence that parents prefer behavioral interventions10 and to limit the risk of side effects that may be observed in a pharmacological approach.
Consequences of Sleep Disruption
The consequences of sleep disruption are multifaceted, with healthy children experiencing negative effects on their emotional, cognitive, and behavioral functioning,4 thus having capacity to influence performance in social and academic environments. Poor sleep can also influence the stress response of healthy children and negatively impact distress management6 and cognitive skills necessary for problem-solving and planning. Finally, sleep disturbances that exist or begin in adolescence can persist into adulthood.11
In addition to the consequences noted earlier, there is evidence to suggest that pediatric patients with pain experience effects on daytime functioning and activity level to a greater degree than do patients without pain.12 Disruptions in sleep of a child can also have effects on the sleep and daytime functioning of parents, with reports of negative mood, affected concentration, and daytime sleepiness.13,14 Such effects have the propensity to influence parental capacity to respond to their child's needs during the day and encourage other behavioral interventions for pain management and support.
Assessment of Sleep
Assessment of sleep can initially be achieved through patient (subjective) and parent or caregiver (proxy) questionnaires, behavioral observations, or actigraph data (ie, from an actiwatch wearable device) to assess sleep duration.15
Behavioral observation of sleep may be completed by an older child capable of reading and writing, in the form of a sleep journal with details including time they went into bed, time they fell asleep, number and duration of night wakings, time they woke up, and number and duration of daytime naps.16 Such a journal may also incorporate self-assessment of overall mood and sleepiness. Sleep journals can be a cost-effective alternative to questionnaires or surveys17 and can be used to capture meaningful information such as total sleep time, sleep latency, time in bed, and wakings after sleep onset.
Questionnaires that assess both sleep disruption and sleep-related impairment are also available with the Patient Reported Outcomes Measurement Information System (PROMIS) measure being one proposed measure for adolescents. The PROMIS includes both the Sleep Related Impairment and Sleep Disturbance Scale, with the former measuring alertness, sleepiness, tiredness, and functional impairments with sleep problems and the latter measuring difficulties falling and staying asleep and sleep satisfaction. Both measures are available through nihpromis.org with both a child self-report and parent-report version available.
In settings where a brief screen may be indicated (eg, a well-child visit), the BEARS tool has been proposed, with the acronym capturing sleep issues observed as most prevalent across toddlers, preschoolers, and school-aged children: Bedtime problems, Excessive daytime sleepiness, Awakenings during the night, Regularity of sleep-wake cycles, and Sleep-disordered breathing/snoring.18
Poor sleep may be caused by one or more factors and conceptualized under 4 broad categories: insufficient sleep duration, fragmented/disturbed sleep, circadian misalignment, and primary disorders that impair sleep or increase sleep needs.19 A thorough history and physical examination by a health care provider should include evaluation of sleep behaviors, medical history, sociocultural factors/family attitudes about sleep, sleep hygiene, use of medication or substances affecting sleep, and family history of sleep disorders. Referral for polysomnography may be considered if additional information is required, including for evaluation of obstructive sleep apnea, central apnea, periodic limb movement disorder, or restless legs syndrome. Treatment for insufficient sleep or insomnia typically begins with behavioral nonpharmacological approaches, with optimization and maintenance of good sleep hygiene.
Barriers to Sleep
Meltzer20 presented common “bedtime problems” in young children, including bedtime refusal and bedtime stalling, which may include attempts to delay bedtime through requests for parental attention or other means, and negative sleep-onset associations. Negative sleep-onset associations involve an action or stimuli that a child relies upon to either fall or stay asleep that is unsustainable in nature (eg, parents remaining in bed with the child at sleep onset but leaving once the child is asleep) and interferes with child's capacity to remain asleep.
With respect to pediatric patients with pain, such bedtime challenges and problems may be observed in context of increased symptoms of pain at bedtime, notable increase of parental attention to pain during bedtime, and efforts to alleviate child pain through remaining in the child's bed or allowing the child to transition to the parent's own bed throughout the night. Although parents, of course, wish to help a child who has pain fall asleep more easily, staying with a child at bedtime or allowing a child to transition to the parent's bed during the night can lead to extended bedtime routines and more frequent wakings at night.
Adolescents may be prone to poor sleep hygiene habits through use of electronics, inconsistent sleep schedules, and interference of other factors (eg, social influences or school). In addition, children and adolescents alike may experience distress about their perceived inability to sleep, which in turn serves to “open” a pain gate or “turn up the pain dial.” 21
After a challenging night's sleep, individuals may remain in bed past their typical rising time, thus dysregulating the sleep cycle and increasing risk for worsened pain. As such, efforts to promote consistent sleep schedules and to enhance anxiety and distress management are often encouraged.
Behavioral Therapy for Pediatric Sleep Issues
The 5-step intervention next can be useful to help children achieve independent sleep skills even when they have chronic pain. Development of healthy, independent sleep habits and good sleep hygiene is critical in promoting improved quality and quantity of sleep, and this can often help improve daily functioning and decrease daytime pain levels.
Preparing a Child's Bedroom for Optimal Sleep
The first step in helping a child improve his or her sleep is to prepare the child's bedroom. The term “stimulus control” refers to the process of creating a pleasant association with the sleep environment (eg, bedroom) to encourage a sense of comfort and to reduce negative associations with the sleep environment (eg, long period of wakefulness in bed and worry about academic assignments).22
The presence of electronics may serve as a cue for interacting with peers or may be associated with homework and academics and these should be eliminated from the sleep environment and replaced with stimuli that promote a sense of comfort and relaxation.
In the way that adults are often encouraged to read at bedtime to quiet the mind and help achieve a more rapid sleep onset, children and adolescents can benefit from a “bedtime basket” to accomplish the same.23 The bedtime basket contains a variety of nonelectronic items that provide “something to do” until the child is drowsy enough to fall asleep. The basket, for example, could contain books, picture books, drawing pads, small safe toys, and so on.
Children should also have comfortable sleepwear and bedding, a bedroom set to the appropriate temperature and a bedside reading light, along with a soft night-light. Use of stimuli that turn off later (videos, storytelling apps, music, starlight projectors, and so on) should be avoided, so that the bedroom sounds and looks the same in the middle of the night as it does at bedtime. This will often help a child return to sleep more quickly and easily after a nocturnal waking.
Younger children may also benefit from use of a security object or “bedtime buddy” such as a teddy bear or soft blanket that promotes a sense of comfort.24
Additional approaches to encourage a sense of relaxation via reduction of stressors include removal of clocks, watches, or other items that direct attention to time of night and time that has passed while attempting to fall asleep. A pad of paper and pen or pencil can allow the child to record worries, thoughts, or concerns that may interfere with sleep so that these can be addressed the next day, rather than become associated with the bed and with bedtime. A useful exercise to help children to manage worry or anxious thoughts, the Guide to Worry Time, can be found in Pediatric Sleep Problems: A Clinician's Guide to Behavioral Interventions by Meltzer and McLaughlin Crabtree.23
Using a Comforting, Consistent Bedtime Routine to Cue Drowsiness and Sleep
A comforting, consistent bedtime routine can begin to reliably cue drowsiness and a rapid sleep onset when used nightly. Initiating this routine at the same time each night can be helpful and reduce bedtime resistance. Children sometimes try to add extra steps to the nightly routine and a chart with each of the steps can help reduce this. An ideal routine might progress from the kitchen to the bathroom to the child's bedroom. For example, the routine might consist of a bedtime snack in the kitchen, some washing up and brushing teeth in the bathroom, and then some time spent reading together in the child's bed. It is often helpful to have a way to mark the end of reading time (by choosing a set number of books or setting a timer).
Self-comforting and Relaxation Training
Self-comforting refers to a child's ability to both initiate sleep onset independently and return to sleep independently after an awakening. A simple, gentle way to help a child learn this skill is to have a consistent, predictable bedtime routine that concludes with some time spent reading with a parent. Then the parent would remind the child to read or play with items in a bedtime basket independently until drowsy, as described earlier.
At the same time, over days or weeks, the parent would gradually work on withdrawing his or her presence from the child's room. Most often, a parent would sit quietly in a chair near the child's bed and this chair would shift closer and closer to the child's bedroom door over days or weeks until the parent could leave the room immediately after the bedtime routine concludes.24
Children can also be encouraged to learn and practice some proven techniques to promote a sense of relaxation and improve sleep.25 Such techniques include diaphragmatic breathing, progressive muscle relaxation, and guided imagery. Children can be taught these techniques in the daytime and then encouraged to use them at bedtime, if they would prefer, instead of reading or using items in the bedtime basket.
Limit-Setting After the Bedtime Routine Concludes
Meltzer20 presents the challenges associated with setting inconsistent limits with respect to a child's bedtime routine. Such variability and inconsistency may include responding to multiple requests after the bedtime routine concludes. Parents sometimes think that responding to these extra requests will allow the child to have everything they need to fall asleep. However, by granting all of these requests, parents inadvertently reward children for staying awake.24 In addition, rewarding the child's behavior can lead to a perpetual cycle of bedtime stalling that delays sleep onset and undermines efforts to promote adequate sleep time.
One simple way to limit these requests is through the use of “bedtime tickets.” These are small cards or tokens that can be given to the child at the conclusion of the bedtime routine. Children may be given 1 or 2 of these tickets and then allowed to exchange these for 1 or 2 final requests (another hug, a refill of the water cup, and so on). Unused tickets may be traded for a small reward in the morning. Additional limits may be encouraged around adhering to a set wake-up time to reduce opportunity to disrupt the sleep-wake cycle.
Managing Night Wakings
Children's sleep quality may also be improved by having a way to manage any night wakings. All children wake at night, usually at the end of a sleep cycle, but children with chronic pain may experience these wakings even more often and it may be harder for these children to return to sleep. This is when healthy self-soothing behaviors can be very effective. When the child wakes during the night, they can use self-soothing behaviors such as cuddling a soft toy, listening to music, or using diaphragmatic breathing, progressive muscle relaxation, or meditation, to reduce anxiety, stay in bed, and fall back to sleep.
Children who have learned to self-soothe, as described earlier, may have an easier time returning to sleep more quickly than children who still need the presence of a parent to fall asleep and return to sleep. In addition, if a child is eventually allowed to transition into a parent's bed during the night, he or she may wake often until this transition is allowed.
If a child's anxiety about being in pain recedes in the parent's bedroom rather than in his or her own bedroom, this transition is even further reinforced. Ideally, even if some intervention from a parent is required at night to help a child who is in pain or who is experiencing anxiety, the relief from this pain or anxiety would occur in the child's own room rather than in the parent's bedroom. This also encourages a child to go to sleep each night and wake up each morning in his or her own room.
Nevertheless, even children who can fully self-soothe at bedtime or after a night waking may need to engage in a quiet, relaxing activity during the night to distract themselves from their pain. This can often be successfully accomplished by using a bedside reading light and a book (or even an e-reader on the night setting) until the child is drowsy enough to fall asleep again. The night setting on an e-reader minimizes the type of emitted light that may make the brain think that it is daytime rather than nighttime.
Cognitive-Behavioral Therapy for Insomnia in Children
Cognitive behavioral therapy for insomnia (CBT-I) is a manualized program that is well researched in adults with sleep impairment and has been modified for adolescents and school-age children, with encouraging results.26,27 Palermo and colleagues27 provided a CBT-I protocol designed for adolescents with insomnia and comorbid medical or mental health conditions that includes core components of stimulus control, sleep restriction (eg, reduction of daytime naps to promote overnight sleep), and sleep hygiene. Additionally, optional interventions include relaxation training, cognitive restructuring (ie, identifying and challenging unhelpful thoughts regarding one's sleep capacities), fatigue management, and parental support and guidance.
CBT-I is typically delivered individually or in group formats and implemented by clinical psychologists or other health care providers.28 Clinical trials on CBT-I involving school-aged children have recruited young patients between 5 and 13 years of age, although 7 years or older may be more reasonable for children to understand the concepts and be able to apply the cognitive skills necessary to engage in therapy. Because parental or caregiver behavior plays a significant role in sleep for school-aged children, interventions are designed to relate to the parent/caregiver and to be interventions unique to the child.
Most CBT-I interventions that have been systematically examined range from 3 to 6 sessions. CBT-I may include supplementary treatment such as faded bedtime with response cost and positive reinforcement (FBRC-PR) or bright-light therapy for adolescents with delayed sleep phase. In addition, CBT-I for adolescents may include goal setting stimulus control, bedtime fading, graduated extinction, sleep restriction, and cognitive restructuring.
Most interventions begin with sleep education and sleep hygiene techniques to optimize the environment for sleep. School-aged children often have difficulty with initiating sleep, with long sleep latencies (duration of time to fall asleep). Faded bedtimes, an intervention that schedules bedtimes at a later time so the child is routinely sleepy when attempting sleep, can be used to address this issue.29 Using faded bedtimes, the child's bedtime is delayed by 15 minutes whereas wake time is consistent for 1 week, and napping is avoided. After 1 week, if sleep latency remains over 20 minutes, the child's bedtime is delayed by another 15 minutes. This continues until the child's sleep latency is less than 20 minutes or if daytime consequences occur, such as sleepiness at school, with the goal being to identify the bedtime that provides a normal sleep latency of less than 20 minutes while avoiding daytime consequences.29
Graduated extinction and positive reinforcement are also used as strategies among school-aged children to help achieve a more positive bedtime routine in which the child can feel comfortable and confident about going to sleep.
Graduated extinction centers on a behavior, such a parental attachment at bedtime, and gradually removes the stimulus (parental presence) from being a dependent factor in the child's ability to fall and stay asleep.
Positive reinforcement is used alongside graduated extinction to provide reward for successful achievements, such as playing a game in the morning with the parent after sleeping alone all night.28,29
“Thought-challenging” is a technique used in school-aged children and adolescents to dismantle irrational thoughts, anxiety, or fears about sleep—first by identifying the negative or irrational thought and then by replacing it with a positive or functional thought.
Adolescent Sleep Issues
Adolescence is a developmental period in which delayed circadian rhythm can manifest, resulting in a delay of 2 or more hours in going to sleep and staying asleep later into the day (especially on weekends). This may become a normal routine for weekend bedtimes and can complicate efforts in using restricted sleep to correct sleep deficiencies or differentiate delayed circadian rhythm from insomnia.
In the case of delayed circadian rhythm, the use of CBT-I as first-line treatment is not recommended.29 Sleep restriction therapy is a strategy similar to faded bedtimes, which is used in adolescents and adults to reduce sleep latency by going to bed when sleepy, and rising from bed at a time that is acceptable to meet personal responsibilities and social demands, such as school or a job.
Stimulus control therapy is a technique, similar to positive reinforcement, that aims to establish positive associations with going to bed by avoiding wakefulness activities in bed and only going to sleep when tired.29 In addition to sleep hygiene and thought-challenging, as described earlier, other issues to address with adolescents include avoidance of caffeine or eating and use of interactive electronic devices before bed.
Sleep Hygiene as a Standardized Component of Pediatric Pain Management
Although sleep disturbances play a significant role in pain management, with evidence to support the negative effects of poor sleep on pain severity, interference, and both social and physical functioning, methods to address sleep issues are not routinely included in pain management.30,31
Low-resource and low-cost interventions for assisting children and adolescents to achieve better management of their sleep can improve pain outcomes and patient and family quality of life. Using a standardized approach to assessing and managing pain, sleep, and other mental health comorbidities, including anxiety and depression, may be more effective than treating each condition in isolation. However, many aspects of sleep management, especially for children and adolescents with chronic pain, require additional empirical evidence, including the effectiveness of each technique bundled under the umbrella of CBT-I, effectiveness among diverse patient populations and family structures or home environments, and delivery modalities that are most effective for establishing healthy sleep habits and routines.
Health care professionals who work with pediatric patients with chronic pain are likely aware of the challenges patients may have with falling asleep and acquiring necessary sleep, along with reports of feeling fatigued and sleepy during the day. The bidirectional (and potentially unidirectional) relationship between sleep and pediatric pain is notable and underscores the importance of assessment and exploration of sleep challenges and meaningful treatment interventions.
Assessment of sleep can be completed in a multimodal fashion with available questionnaires, such as the PROMIS measures, offering opportunity for a parent and patient self-report of sleep disruption and sleep-related impairment. In settings where a briefer screen may be preferred, a tool such as the BEARS assessment may suffice. An additional assessment approach is the cost-effective use of a sleep journal, which may provide the additional benefit of promoting patients' attention to their sleep experience and sleep hygiene efforts and other behavioral strategies to encourage sleep. In turn, such attention may also lead to the patient observing a connection between application of sleep strategies and pain experience.
When considering treatment approaches, there is ample reason to consider behavioral interventions as a first-line treatment. Available interventions listed in this article are best completed with both patient and parent involvement, with some approaches involving the parent as a “coach” (eg, in promoting relaxation and self-comfort strategies) or as a gentle yet firm enforcer of limits (eg, with respect to bedtime/wake time routines and eliminating negative sleep associations).
With such environmental and behavioral changes, there is opportunity to empower pediatric patients by providing strategies and approaches they can apply that could have a notable influence on their pain experience. Regardless of a patient's pain experience, adoption of simple, cost-effective strategies to enhance one's sleep experience poses little to no risk and may help offset the risk of other important childhood/adolescent domains being impaired (eg, academics or social life). These same strategies can also lower the risk of the child maintaining sleep problems in adulthood and beyond.
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