At least 93 million children are living with disabilities worldwide 1 . Children with disabilities such as attention-deficit and/or hyperactivity disorder (ADHD) are more likely to have sleep disturbances than children without disabilities 2 3 4 5 6 7 8 9 , and may warrant particular attention for health promotion and disease prevention. Identifying attitudes, beliefs, knowledge, and perceptions of caregivers and health professionals who treat children with disabilities is essential in developing effective intervention programs to improve children’s sleep health. To our knowledge, no such qualitative data about adults who have key roles in the life and daytime activities of children with disabilities are available. The lack of such qualitative data about children’s sleep among caregivers and health professionals may contribute to the persistent high prevalence of sleep disturbances in disabled children. Since successful interventions should reflect the views of targeted populations 10 , focus groups are commonly used because they can efficiently explore the attitudes, beliefs, and perceptions of the participants.

In this qualitative study, we conducted focus group interviews about children’s sleep with primary caregivers and rehabilitation providers of children with disabilities. The aims of this study were to: 1) understand the attitudes, beliefs, knowledge, and perceptions of caregivers and rehabilitation providers of children with disabilities regarding children’s sleep; 2) identify factors that could facilitate or impair children’s sleep hygiene; and 3) identify areas for intervention and improvement of children’s sleep health.

Focus group participants identified 7 themes related to children’s sleep, such as lifestyle behaviors, family factors, and children’s disabilities or comorbidities. Caregivers reported using various methods to help children fall asleep during bedtime, some of which are inconsistent with good sleep hygiene practices, such as staying with children, watching TV/movies, and using sleep medicine. In contrast, sleep management advice from rehabilitation providers was highly appropriate, and included control of television/internet and stimulant use, and the establishment of sleep routines for children. To our knowledge, this is the first study to examine attitudes, beliefs, knowledge, and perceptions about children’s sleep from both caregivers and rehabilitation providers of children with disabilities. The observations that caregivers and rehabilitation providers had opposing perspectives regarding the influences of lifestyle characteristics such as electronics, coffee consumption, and medication use on child sleep, and that most individuals had high levels of concern over children’s sleep but often under-estimated sleep needs of children may be of fundamental importance for informing the design of intervention programs aimed at improving sleep health among children with disabilities.

Various factors may play important roles in children’s sleep 14 . We found that caregivers exhibited awareness of behavioral, environmental, and family factors. Most caregivers realized that family schedules and routines, as well as sleeping space and noise, were related to children’s sleep. Caregivers and rehabilitation providers believed that sleep duration and sleep quality were important determinants of good sleep. However, many caregivers and health professionals endorsed fewer than the ideal amount of sleep hours for school-aged children, indicating that they may have inappropriate perceptions of sleep needs for children. Our previous study reported that school-aged children need more sleep than the amounts that participants perceived as ideal 15 . Individuals from divergent cultures may have different perceptions and views concerning the nature and importance of sleep. We note that investigators have documented cultural differences in sleep attitudes and beliefs across populations 16 17 .

Rehabilitation providers expressed particular concern about the effects of electronics and stimulant use on children’s sleep. Although caregivers believed that behavioral factors were related to children’s sleep, none of them mentioned stimulant use as a possible influence. This suggests that caregivers may be unaware of the connection between stimulant beverage consumption and poor sleep. Caffeine consumption is becoming common among children and youths globally 18 19 . Our recent study showed that caffeinated beverages and other stimulant use were significantly associated with poor sleep among college students in Chile 18 . Increasing evidence has also shown that television viewing and computer use are related to too little sleep for children 20 21 . The National Sleep Foundation Sleep in America Poll reported that caffeine intake and the use of new technology are associated with shortened sleep among US children 21 . Our study underscores the need to educate children and caregivers about the influence of caffeine consumption and screen time on sleep health. Educational intervention programs are needed to help parents understand that lifestyle behaviors may be related to sleep health.

Children with disabilities are at a higher risk of sleep problems than children without disabilities 9 22 . Parents of children with disabilities often report that children have difficulty falling asleep, restless sleep, snoring, and nocturnal awakenings 23 24 . In our study, most caregivers reported that their children had nightmares and nocturnal awakenings. It has been reported that nightmares and sleep disturbances are common among children with post-traumatic stress disorder or childhood trauma 25 26 . It is vital that caregivers have an appropriate understanding of children’s disabilities and comorbidities and the impact of health conditions on children’s sleep. Sleep problems have been shown to be associated with deficits in child cognitive and behavioral functioning 27 28 .

Caregivers of children with disabilities may experience more stress and depression than caregivers of children without disabilities 14 29 30 . Children’s sleep disturbances may also adversely affect caregivers, such as mothers 9 14 22 31 . Children with disabilities such as ADHD and cerebral palsy are more likely than children without disabilities to wake their parents at night 32 . Children’s sleep disturbances can be stressful for parents 14 33 . Our study revealed that caregivers had adverse emotional responses such as anxiety and frustration because of children’s sleep problems. Maternal depression symptoms have been reported to adversely influence children’s sleep 34 . The provision of long-term care for children with disabilities may create great challenges for caregivers and impair their physical and psychological health 4 . Caregiving stress and other health issues from the challenges that caregivers of disabled children experience should be considered in designing effective family-based intervention programs that target children with disabilities, their caregivers, and family members.

There is much uncertainty about the responsibility that caregivers or health professionals should take for children’s sleep health. It may be important for both caregivers and health professionals to acknowledge their respective responsibilities for children’s sleep. Health professionals are well positioned to provide educational messages to children and caregivers. In this study, 8 out of 18 rehabilitation providers reported having professional experience with sleep medicine or sleep hygiene, whereas only 2 had sleep medicine or sleep hygiene training. Our study highlights the need for health professionals of children with disabilities to acquire necessary sleep medicine and sleep hygiene training to further assist children and their caregivers in promoting healthy sleep.

It has been reported that good sleep hygiene practices are associated with better sleep 35 , while parent-set bedtimes are related to earlier bedtimes, longer sleep, and better daytime functioning 36 . In this study, we found that caregivers used various methods to address children’s sleep problems. Some caregivers used strategies such as story-telling, evening bathing, or providing comfort and affection to their children as a means for encouraging sleep. However, some caregivers relied on sleep medications or allowed children to watch television until they became bored and finally fell asleep. There are no ideal sleep medications for children; all hypnotic drugs tend to be effective for short periods, but may cause significant adverse effects 14 . Although the American Academy of Sleep Medicine has endorsed the use of melatonin for circadian rhythm sleep disorders 37 , melatonin is beneficial only when melatonin secretion is inadequate or inappropriately timed 14 38 39 . Because sleep drugs should be prescribed only when appropriately implemented behavioral interventions are ineffective 14 , caregivers should acknowledge the importance of promoting children’s sleep hygiene and sleep-related lifestyle behaviors such as physical activity and the control of electronics and stimulant use.

Public health recommendations are that children have an established bedtime routine and refrain from caffeine consumption and from sleeping in bedrooms with televisions 35 . The Institute of Medicine (IOM) has recommended that caregivers adopt practices that promote age-appropriate sleep durations, create environments that ensure restful sleep, such as no screen media in rooms where children sleep; encourage practices that promote child self-regulation of sleep 40 . Health and education professionals should be trained in how to counsel parents about their children’s age-appropriate sleep durations. It is important for caregivers and families to create a sleep-friendly routine and environment for children. Our findings about the difference between overall recognition of the importance of sleep and the ability of caregivers to articulate positive sleep management strategies underscore the need to implement effective interventions among caregivers to improve child sleep health.

Our study has limitations. We included only 27 focus group participants consisting of caregivers and rehabilitation providers at a rehabilitation center in Chile. The results based on the small sample size from one study site may not be generalizable to other populations. However, such focus group discussions can provide in-depth reflections that reveal common themes among caregivers and rehabilitation providers. In addition, we recruited participants who volunteered to participate in the study. The generalizability of our conclusions may be limited, since study volunteers may be enriched with a population of caregivers and rehabilitation providers who were more knowledgeable than nonparticipants. Despite this, our results suggest that the findings may be valuable for informing the development of intervention programs aimed at improving sleep health among children with disabilities. Further sleep studies in larger and culturally divergent populations are warranted to confirm our findings. Given that interventions can be delivered in various ways (e.g., online resources, face-to-face), future research should address the preferred ways caregivers want to receive information and preferred delivery methods by health professionals.

This qualitative study showed that caregivers exhibited awareness of behavioral, environmental, and family factors related to children’s sleep hygiene. However, many caregivers were unaware of the influences of lifestyle factors such as use of electronics and consumption of caffeinated beverages on children’s sleep. Our findings concerning the difference between overall recognition of the importance of sleep and the ability of caregivers to articulate positive sleep management strategies underscore the need to implement effective interventions among caregivers to improve child sleep health. While both caregivers and rehabilitation providers recognized the importance of sleep for children’s health and functioning, they differed in their understanding of how sleep hygiene practices influence sleep. Rehabilitation providers recognized the negative influence of electronics on sleep and the positive influence of sleep routines. In contrast, caregivers reported use of television/movie watching and stimulants as coping strategies for managing children’s sleep problems. Health professionals are well positioned to provide educational messages to children and their caregivers, and further training may improve their ability to assist children with disabilities, and their families in achieving positive health goals. The knowledge gaps identified in this study can inform the design of educational messages and training programs that address caregivers’ and providers’ perceptions and practices surrounding child sleep.

ADHD: Attention-deficit and/or hyperactivity disorder; CPASS: The Chile Pediatric and Adult Sleep and Stress Study.

The authors declare that they have no competing interests.

XC conceptualized and designed the study, designed the data collection instruments, carried the initial analyses, and drafted the initial manuscript. BG and JCV supervised data collection and critically reviewed the manuscript. MP carried out the field survey and coordinated data collection at the study site. SG carried out the initial analyses. CB supervised data collection and critically reviewed the manuscript. RDZ and SR critically reviewed and revised the manuscript. MAW conceptualized and designed the study, designed the data collection instruments, supervised data collection, and critically reviewed and revised the manuscript. All authors read and approved the final manuscript as submitted.