Professor Luci Wiggs

The current systematic review sought to identify the relationship between the range of different parental sleep-related practices that had been explored in relations to child sleep outcomes in children aged 1–3 years. A systematic literature review was carried out in CINAHL, The Cochrane Library, PsycArticles, PsycInfo, PubMed and Web of Science, as well as relevant grey literature in August 2022 using the terms; population (children, aged 1–3 years), exposure (parental sleep-related practice) and outcome (child sleep). Any quantitative study published between 2010 and 2022 that explored the relationship between parental sleep-related practices and the sleep of children aged 1–3 years were included. The Mixed Methods Appraisal Tool was employed to quality appraise included studies and results were narratively synthesised. In all, 16 longitudinal and cross-sectional quantitative studies met inclusion criteria. Parental presence or physical involvement, as well as broader parental practices including using screens or devices at bedtime and night-time breastfeeding were all related to poorer child sleep outcomes. Consistent and relaxing routines, sleeping in a cot, and spending all night in their own sleep location were associated with better child sleep outcomes. Acknowledging the plethora of diverse parental sleep-related practices, which may have varying relationships with child sleep outcomes, could be usefully considered in theoretical models and to inform clinical practice. Issues of definitional and measurement ambiguity are highlighted and discussed.

Background and purpose
Children and young people (CYP) with epilepsy see healthcare professionals (HCPs) for management of their seizures but may require information, advice and support with a range of broader topics. The purpose of the survey was to identify from HCPs, which topics CYP with epilepsy and their parents/carers ask about other than seizure management, and how adequately HCPs feel able to support them with these topics.

Method
A cross-sectional online survey was used to collect data. Adverts which included a link to the survey was shared via social media channels, professional networks and United Kingdom (UK)-based epilepsy networks. Eighty-eight HCPs in the UK (who worked with CYP with epilepsy and their parents/carers) completed the survey. Quantitative data are presented descriptively. Qualitative data (free-text responses) were reflexively thematically analysed.
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Results
CYP with epilepsy and their parents/carers were reported to ask HCPs for information, advice and support about a range of topics, most commonly, cognition and mental health. CYP were reported as also frequently asking about aspects of their social life while parents/carers commonly asked about sleep. HCPs varied in how able they felt to adequately support families about these topics, as well as in their views about which resources could be most useful. Having insufficient time and a lack of suitable services
and resources to refer to, or draw upon, were key barriers to HCPs being able to support CYP and their families.

Discussion
Findings highlight the broad array of topics CYP with epilepsy and their families are reported as seeking support for. HCPs identified gaps in services and their abilities to meet those needs. There appeared to be a mismatch between the support that families were seeking and the ability of HCPs to meet these needs. Findings have implications for how HCPs could best be supported to deal with topics raised by CYP and families in clinic, highlighting the potential usefulness of informational resources on key topics for HCPs, parents/carers and CYP.

Introduction. Sleep and epilepsy have an established bi-directional relationship yet only one randomised controlled clinical trial has assessed the effectiveness of behavioural sleep interventions for children with epilepsy. The intervention was successful, but delivered via face-to-face educational sessions with parents, which are costly and non-scalable to population level. The Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) Sleep-E trial addresses this problem by comparing clinical- and cost-effectiveness in children with Rolandic epilepsy between standard care and standard care augmented
with a novel, tailored parent-led CASTLE Online Sleep Intervention (COSI) that incorporates evidence-based behavioural components.
Methods and analyses. CASTLE Sleep-E is a UK-based, multi-centre, open label, randomised, parallel-group, pragmatic superiority trial. A total of 110 children with Rolandic epilepsy will be recruited in out-patient clinics and allocated 1:1 to standard care (SC) or standard care augmented with COSI (SC + COSI). Primary clinical outcome is parent-reported sleep problem score (Children’s Sleep Habits Questionnaire). Primary health economic outcome is the Incremental Cost Effectiveness Ratio (National Health Service and Personal Social Services perspective, Child Health Utility 9D instrument). Parents and children (≥ 7 years)
can opt into qualitative interviews and activities to share their experiences and perceptions. Jointly, the qualitative trial component and the COSI system (e-analytics and evaluation module) will provide information for a process evaluation (context, implementation, and mechanisms of impact).
Ethics and dissemination. The CASTLE Sleep-E protocol was approved by the Health Research Authority East Midlands – Nottingham 1 Research Ethics Committee, reference: 21/EM/0205. Trial results will be disseminated to scientific audiences, families, professional groups, managers, commissioners, and policy makers. Pseudo-anonymised Individual Patient Data will be made available after dissemination on reasonable request. Registration details ISRCTN registry (Trial ID: ISRCTN13202325, prospective registration 09/Sep/2021). See Supplemental Table 1 for the World Health Organisation Trial
Registration Data Set (Version 1.3.1).

Background.

In paediatric epilepsy, the evidence of effectiveness of antiseizure treatment is inconclusive for some types of epilepsy. As with other paediatric clinical trials, researchers undertaking paediatric epilepsy clinical trials face a range of challenges that may compromise external validity

Main body.

In this paper, we critically reflect upon the factors which impacted recruitment to the pilot phase of a phase IV unblinded, randomised controlled 3×2 factorial trial examining the effectiveness of two antiseizure medications (ASMs) and a sleep behaviour intervention in children with Rolandic epilepsy. We consider the processes established to support recruitment, public and patient involvement and engagement (PPIE), site induction, our oversight of recruitment targets and figures, and the actions we took to help us understand why we failed to recruit sufficient children to continue to the substantive trial phase.

The key lessons learned were about parent preference, children’s involvement and collaboration in decision-making, potential and alternative trial designs, and elicitation of stated preferences pre-trial design.

Despite pre-funding PPIE during the trial design phase, we failed to anticipate the scale of parental treatment preference for or against antiseizure medication (ASMs) and consequent unwillingness to be randomised. Future studies should ensure more detailed and in-depth consultation to ascertain parent and/or patient preferences. More intense engagement with parents and children exploring their ideas about treatment preferences could, perhaps, have helped predict some recruitment issues. Infrequent seizures or screening children close to natural remission were possible explanations for non-consent. It is possible some clinicians were unintentionally unable to convey clinical equipoise influencing parental decision against participation. We wanted children to be involved in decisions about trial participation. However, despite having tailored written and video information to explain the trial to children we do not know whether these materials were viewed in each consent conversation or how much input children had towards parents’ decisions to participate. Novel methods such as parent/patient preference trials and/or discrete choice experiments may be the way forward.

Conclusion.

The importance of diligent consultation, the consideration of novel methods such as parent/patient preference trials and/or discrete choice experiments in studies examining the effectiveness of ASMs versus no-ASMs cannot be overemphasised even in the presence of widespread clinician equipoise.

Introduction.
Sleep problems in children with epilepsy (CWE) are common. However, little is known about parental experiences and feelings about managing sleep in their CWE. To provide the most appropriate services' provision, it is essential that the lived experience of parents of this patient group and the issues and problems that they face in managing their child's sleep is understood.

Method.
In 2018, nine mothers of CWE (aged 5–15 years) were interviewed about their perceptions and experiences around their child's sleep, sleep problems and their management, the impact of sleep difficulties on the child and their family and available support.

Results.
Four themes were identified that represented the nature of the child's sleep problems, including settling and night-waking issues, parasomnias and child anxiety around sleep. Seven themes represented mothers' experiences of managing their child's sleep and any associated problems, including the longstanding challenging nature of child sleep issues, management strategies adopted, challenges related to managing sleep over time, the link between sleep and seizures, the negative impact of poor sleep on daytime functioning, role of antiseizure medication and maternal concerns about child sleep. One theme represented the perceived lack of information, help and support available.

Conclusions.
Findings suggest there are unmet needs in supporting parents to deal with sleep, sleep problems and their management in CWE.

Patient or Public Contribution.
This individual study was conducted under the umbrella of the CASTLE research programme (see https://castlestudy.org.uk/). Parents who have lived experience of parenting a child with epilepsy were co-applicants for the programme and were involved in the original conception, aims, design and funding application for the research programme (including the project reported in this paper) and advised on project design. Mothers of CWE who have lived experience of managing sleep and sleep problems in their child were participants who shared their experiences through the interviews, which formed the data of the current study.

Child sleep is a common parental concern and there is an array of resources available to parents. However, exploration of UK parents’ help-seeking behaviours around child sleep is lacking. This study sought to identify the resources parents use to seek information and help for child sleep, as well as to explore what factors parents’ prefer about certain sources and their reservations about using other resources. Parents of 6-36 month old children residing in the United Kingdom (UK) completed an online questionnaire between October 2015 and October 2016 about their use, opinions, and experiences regarding resources for child sleep. Quantitative data was descriptively analysed and thematic analysis was conducted on parents’ open-ended text responses. Participants were 266 UK parents (97% mothers). Parents’ ages ranged from 21-45 years (M=33.49 years, SD=4.71 and all resided in the United Kingdom (UK). General Internet searches were the most commonly reported source used by 47% of parents with a range of other informal resources also frequently consulted. Health Visitors (HVs) were the most accessed healthcare professional reportedly consulted by 38% of parents. Seven themes represented parental preferences for their resource use. Most strongly endorsed included a desire for information from other parents, particularly those with practical experience and accessing information that aligned with their parenting values. Parents’ preferred sources that provided support and reassurance, as well as those that afforded parents the ability to select relevant elements from a range of information. Seven themes represented parents’ reservations about resources. Most strongly endorsed were concerns about reliability, being judged and challenges associated with filtering vast amounts of information. Parents reported having reservations towards sources if they had a previous negative experience of the source. Possible implications of the findings and specific suggestions about how existing and future resources could be adapted to better meet parents’ needs are highlighted. 

Certain parental cognitions about child sleep and bedtime behaviours used with their child have been linked to poorer child sleep. However, previous research has focused on mothers and explored only a limited range of sleep-related cognitions and practices. The current study investigated whether parental cognitions and sleep-related practices (both in connection with their own sleep and their child’s sleep), alongside the bedtime behaviours used with their child were associated with and/or predictive of their child’s sleep. Mothers and fathers from 44 families (with a 12-24 month old) separately completed questionnaires reporting (i) their cognitions (about their own sleep and their child’s sleep), (ii) sleep-related practices (used in connection with their own and their child’s sleep) and (iii) bedtime behaviours used with their child. Child sleep was assessed through parental report and actigraphy. Both parents’ cognitions about their own sleep predicted cognitions about their child’s sleep. Mothers’ own sleep-related practices predicted the types of practices they used with their child. Different patterns of maternal and paternal variables influenced parental perceptions of their child having a sleep problem. Current findings highlight the importance of including mothers and fathers in child sleep research. Parents’ dysfunctional cognitions (their own sleep) and broader sleep-related practices (their own and child sleep) should be considered when exploring influences on child sleep. Results have possible implications for targets of interventions for child sleep problems and also potential implications for theoretical models of child sleep.

Background: Autonomous Sensory Meridian Response (ASMR) is a pleasant physiological tingling sensation induced by certain visual and auditory triggers. ASMR has been shown to reduce stress and increase positive mood, but its effects have not yet been studied in populations with clinically severe symptoms. The present study aimed to investigate whether the experience of ASMR improved mood and reduced arousal in people with and without insomnia and depression symptoms.

Methods: 1,037 participants (18-66 years) completed online questionnaires assessing insomnia and depression symptom severity followed by questionnaires on current mood and arousal levels before and after watching an ASMR video. The independent variables were the participant’s group (insomnia, depression, insomnia and depression combined or control) and whether they experienced ASMR during the video. The dependent variables were the change in mood and arousal levels after watching the video.

Results: As predicted, all participants showed significantly increased relaxation and improved mood after watching the video with the largest effects for participants who experienced ASMR and for participants in the combined and depression groups. No difference was found between the insomnia and control groups.

Limitations: It is not known how many participants were familiar with ASMR videos prior to taking part in the study (nor whether this is important). Also, the categorization of participants into the ASMR group was based on self-report and thus, not verified.

Conclusions: Results suggest that ASMR videos have the potential to be used to improve mood and reduce arousal with implications for alleviating symptoms of insomnia and depression

Although children enact third-party punishment, at least in response to harm and fairness violations, much remains unknown about this behaviour. We investigated the tendency to make the punishment fit the crime in terms of moral domain; developmental patterns across moral domains; the effects of audience and descriptive norm violations; and enjoyment of inflicting punishment. We tested 5- to 11-year-olds in the UK (N = 152 across two experiments, 55 girls and 97 boys, predominantly white and middle-class). Children acted as referees in a computer game featuring teams of players: as these players violated fairness or loyalty norms, children were offered the opportunity to punish them. We measured the type (fining or banning) and severity of punishment children chose and their enjoyment in doing so. Children only partially made the punishment fit the crime: they showed no systematic punishment choice preference for disloyal players, but tended to fine rather than ban players allocating resources unfairly – a result best explained by equalisation concerns. Children’s punishment severity was not affected by audience presence or perpetrators’ descriptive norm violations, but was negatively predicted by age (unless punishment could be used as an equalisation tool). Most children did not enjoy punishing, and those who believed they allocated real punishment reported no enjoyment more often than children who believed they pretended to punish. Contrary to predictions, retribution was not a plausible motive for the observed punishment behaviour. Children are likely to have punished for deterrence reasons or because they felt they ought to.

Many of the same sleep problems seen in typically developing (TD) children are frequently experienced by children with epilepsy (CWE). Behavioural sleep interventions (BSIs) are commonly and successfully used to treat these sleep problems in TD children and in some neurodevelopmental disorder populations. Therefore, BSIs should be effective in CWE however, there are special seizure-related considerations for CWE and their parents which may be salient to consider in any future BSI development for this group. The current study sought to identify, from parents, if there were special considerations for the content and delivery of an online BSI for parents of CWE. Semi-structured interviews were conducted with 9 mothers of CWE and thematic analysis was conducted on the interview data. Ten themes were apparent which represented what parents wanted from any online BSI for CWE. Parents wanted i) other parents’ views and real-life experiences to be included, ii) recognition of how changes over time may influence the appropriateness of using various sleep-management options, iii) to be presented with a range of sleep management options from which they could select, iv) personalised information and suggestions for behaviour-change options, v) help to address child anxiety around sleep, vi) for the advice and behaviour-change options to be practical, vii) general educational information about sleep and the relationship between sleep and epilepsy, viii) for parental worries and concerns to be acknowledged, ix) to receive help, support and reassurance around children’s sleep; and x) to include the child in the intervention. It was clear that any online BSI would require specific adaptations and additions (to content and delivery format) to best meet the needs of parents of CWE. It is hoped that having identified what parents want from on online BSI for CWE will allow these factors to be acknowledged in future intervention development, with the intention to optimise parental engagement and intervention effectiveness. Practical suggestions for how these aspects could be integrated into any online BSI are suggested.

Introduction: Many of the sleep problems experienced by children with epilepsy (CWE) have the same behavioural basis as common sleep problems seen in typically developing (TD) children. Behavioural sleep interventions are widely used to treat these sleep problems in TD children and are hypothesised to be effective for CWE. However, specific considerations need to be addressed and incorporated into a behavioural sleep intervention (BSI) for CWE to ensure the intervention is tailored to this population’s needs. This paper details developing and tailoring an online BSI for parents of CWE, to be used in the CASTLE (Changing Agendas on Sleep, Treatment and Learning in Epilepsy) Sleep-E clinical trial.
Method: In phase one, two existing theory-driven pediatric BSIs were adapted into an online behavioural sleep intervention (CASTLE Online Sleep Intervention or COSI) which specifically incorporated the needs and requirements reported by nine parents of CWE. Scoping their needs included conducting interviews with three CWE so that they could contribute to the overall intervention content. In phase two, six parents participated in a feasibility study, reviewing and feeding back on COSI until parental approval was achieved.
Results: In phase one, a range of adaptations was made to the content and presentation of intervention material to acknowledge and emphasise the key seizure-specific issues to ensure COSI best met parents’ of CWE needs. Adaptations included embedding parent and child experiences in the intervention, including particular information requested by parents, such as the links between sleep and seizures and managing child and parental anxieties around sleep, as well as developing functionality to personalise the delivery of content. In phase two, parents confirmed that they found the final version of COSI to be functional and appropriate (after one round of review) for use by parents of CWE and that 100% would recommend it to other families who have CWE.
Discussion: It is hoped that the use of evidence-based BSIs, adapted to consider salient epilepsy-specific factors, will increase parent-engagement, COSI’s relevance for this particular patient group and overall efficacy in improving sleep in CWE. The effectiveness of COSI will be tested in the CASTLE Sleep-E clinical trial (https://castlestudy.org.uk/).

Background. Healthcare professionals (HCPs), largely doctors, paediatricians, health visitors, midwives, and practice nurses, are in a good position to provide information, help, advice, or guidance to parents for child sleep. However, evidence suggests that there is a gap between the number of parents who desire assistance from HCPs and those that make use of these sources, yet very little is known about the reason for this apparent disparity. The aim of this study was to understand the barriers reported by parents to consulting HCPs about child sleep. 
Method. In this study, 266 U.K.-based parents of children aged 6–36 months old completed an online questionnaire (between October 2015 and October 2016) about their help-seeking behaviours in relation to child sleep. This included reporting perceived barriers to consulting HCPs for child sleep information and advice about problems. 
Results. Thematic analysis highlighted five themes, which parents reported acted as barriers to them consulting HCPs. Specifically, parents perceived HCPs to have a lack of knowledge or training around the topic of child sleep and that advice would be limited in terms of breadth of information or management options that would be offered. Parents were also concerned about wasting their own or HCPs' time, perceived there was a lack of continuity in the information they received, and held concerns about possible negative consequences for their family if they shared details about any child sleep difficulties. 
Conclusions. Possible practical approaches to address the barriers reported by parents are highlighted. This includes improving training around the topic of child sleep for HCPs and adapting the content or manner in which the topic of child sleep and any associated issues are addressed with parents.

coordination disorder (DCD), a condition characterized by everyday movement difficulties. Previously, in a preliminary study, we found higher rates of parent-reported sleep disturbance in children with DCD compared to controls.

Aims: To examine sleep in DCD using objective measures and to examine links with daytime fatigue and sleepiness.

Methods: Two groups (primary and secondary school-aged) of 15 children with DCD, plus matched controls, participated. Parent-reported child sleep was assessed using the Children’s Sleep Habits Questionnaire and actigraphy provided an objective measure of sleep–wake patterns over 1 week (including weekdays and weekend). Pediatric restless legs syndrome (RLS) semi-structured diagnostic interview was conducted with each child and parent to capture symptoms of RLS. Aspects of self-rated child functioning were assessed with questionnaires (Pre-sleep Arousal Scale, Pediatric Daytime Sleepiness Scale, PedsQL Multidimensional Fatigue Scale) and mothers’ reported thoughts about child sleep with the Maternal Cognitions about Infant Sleep Questionnaire. 
 

Results: The DCD groups had greater parent-reported sleep disturbance. Actigraphy results suggested that for secondary aged children with DCD their sleep quality was impaired and there were differences in the timing of sleep compared to controls (including some differences in the variation between weekday and weekend sleep times). The actigraphy of the primary age group with DCD was unremarkable compared to controls. No child in the study met the criteria for RLS. Exploratory analyses suggested that daytime fatigue, aspects of pre-sleep arousal, and daytime sleepiness were reported as greater in the DCD groups and were particularly related to objective sleep parameters in the DCD groups. Maternal thoughts about sleep did not differ between the DCD and control groups.

Conclusion: The nature and underlying cause of sleep disturbance and how it might be linked with aspects of daytime functioning in adolescents with DCD requires further research. Meanwhile, clinical awareness of the risk of atypical sleep patterns/sleep problems in DCD is important to ensure early identification and implementation of appropriate support.

Background

Sleep disturbances are common in children with attention-deficit hyperactivity disorder (ADHD). Sleeplessness is frequently reported although results are inconsistent perhaps because different definitions for it are applied. This study looked at maternal functioning and child objective sleep patterns in relation to different definitions of sleeplessness in children with ADHD.

Methods

The study included 45 children (aged 3–14 years) with ADHD and their mothers. Sleeplessness was defined according to: (i) yes/no report of whether mothers thought their children had a problem with sleeplessness (Maternal definition MD) and (ii) mothers' responses to a quantitative standardized questionnaire (Quantitative definition QD) designed to detect the frequency and duration of parent-reported problems with settling, night waking and early waking. Objective sleep patterns were also assessed by means of actigraphy. Maternal mental health, daytime sleepiness and cognitions related to child sleep were assessed by questionnaire.

Results

Both definitions appeared to tap similar although slightly different constructs. There were no group differences in objective sleep patterns. Maternal mental health was found to be significantly worse in the mothers who considered their child to be sleepless (MD) (P < 0.025), but not in those mothers whose child was found to be sleepless according to the standardized criteria (QD). Maternal sleepiness did not differ between groups. For both categories of sleepless children (MD and QD), the mothers had significantly more doubts about their competency as a parent (P < 0.01 and P < 0.025, respectively) compared to mothers of children without sleeplessness.

Conclusions

Two different maternal assessments of child sleeplessness in children with ADHD may assess subtly different constructs, but both may provide useful information about potential problems across the family.

Attention to this topic is warranted given the growing evidence that insufficient and/or poor-quality sleep negatively impacts a range of child outcomes including physical health, mental health, cognitive function and behaviour as well as aspects of parental functioning including stress, mood and overall family functioning. It is possible that some relationships between child sleep patterns and both child and parent functioning might not be directly causal (eg, aspects of both child sleep and child cognition could reflect underlying maturational processes or any difficulties in both the parent and the child might be due to environmental factors or shared genetic influences). However, experimental work does support the idea that there are certainly, frequently bi-directional and reciprocal, causal relationships between child sleep patterns and aspects of both child and parent neurobehavioural functioning and health. As such, trying to optimise sleep and sleep practices for children is essential in terms of optimising outcomes for all members of the family unit.

OBJECTIVE: To assess the effectiveness of a weighted-blanket intervention in treating severe sleep problems in children with autism spectrum disorder (ASD).

METHODS: This phase III trial was a randomized, placebo-controlled crossover design. Participants were aged between 5 years and 16 years 10 months, with a confirmed ASD diagnosis and severe sleep problems, refractory to community-based interventions. The interventions were either a commercially available weighted blanket or otherwise identical usual weight blanket (control), introduced at bedtime; each was used for a 2-week period before crossover to the other blanket. Primary outcome was total sleep time (TST) recorded by actigraphy over each 2-week period. Secondary outcomes included actigraphically recorded sleep-onset latency, sleep efficiency, assessments of child behavior, family functioning, and adverse events. Sleep was also measured by using parent-report diaries.

RESULTS: Seventy-three children were randomized and analysis conducted on 67 children who completed the study. Using objective measures, the weighted blanket, compared with the control blanket, did not increase TST as measured by actigraphy and adjusted for baseline TST. There were no group differences in any other objective or subjective measure of sleep, including behavioral outcomes. On subjective preference measures, parents and children favored the weighted blanket.

CONCLUSIONS: The use of a weighted blanket did not help children with ASD sleep for a longer period of time, fall asleep significantly faster, or wake less often. However, the weighted blanket was favored by children and parents, and blankets were well tolerated over this period.

OBJECTIVES:

A large percentage of children with autism spectrum disorders (ASD) have bedtime and sleep disturbances. However, the treatment of these disturbances has been understudied. The purpose of our study was to develop a manualized behavioral parent training (BPT) program for parents of young children with ASD and sleep disturbances and to test the feasibility, fidelity, and initial efficacy of the treatment in a small randomized controlled trial (RCT).

PARTICIPANTS AND METHODS:

Parents of a sample of 40 young children diagnosed with ASD with an average age of 3.5years were enrolled in our study. Participants were randomized to either the BPT program group or a comparison group who were given nonsleep-related parent education. Each participant was individually administered a 5-session program delivered over the 8-week study. Outcome measures of feasibility, fidelity, and efficacy were collected at weeks 4 and 8 after the baseline time point. Children's sleep was assessed by parent report and objectively by actigraphy.

RESULTS:

Of the 20 participants in each group, data were available for 15 participants randomized to BPT and 18 participants randomized to the comparison condition. Results supported the feasibility of the manualized parent training program and the comparison program. Treatment fidelity was high for both groups. The BPT program group significantly improved more than the comparison group based on the primary sleep outcome of parent report. There were no objective changes in sleep detected by actigraphy.

CONCLUSIONS:

Our study is one of few RCTs of a BPT program to specifically target sleep disturbances in a well-characterized sample of young children with ASD and to demonstrate the feasibility of the approach. Initial efficacy favored the BPT program over the comparison group and suggested that this manualized parent training approach is worthy of further examination of the efficacy within a larger RCT.

Sleep disturbance is a common problem for many children and especially likely to be present in children under the care of pediatric health professionals, although many intervention/prevention opportunities are being missed. This is worrying in view of the fact that resolving or mitigating sleep disturbance is likely to benefit the child and family, and for some children with multiple and complex problems, might be one of the most easily treatable problems with which they present. In considering ways in which sleep disturbance is commonly comorbid with other pediatric clinical conditions (or aspects related to these conditions), examples of the multiple and reciprocal relationships between sleep and children’s health are highlighted and the fact that attention to children’s sleep should be central to optimal pediatric clinical services is therefore emphasized. Suggestions for ways in which this can be achieved include increased education (for parents and professionals), routine preliminary screening for vulnerable children, the development of clear guidelines for assessment, management and referral for use in primary- and secondary-level services and, ultimately, an increased number of tertiary pediatric multidisciplinary sleep clinics.

BACKGROUND:

Difficulties in initiating and maintaining sleep are common in children with neurodevelopmental disorders. Melatonin is unlicensed in children yet widely prescribed for sleep problems.

OBJECTIVE:

To determine whether or not immediate-release melatonin is beneficial compared with placebo in improving total duration of night-time sleep in children with neurodevelopmental problems.

DESIGN:

Randomised, double-blind, placebo-controlled, parallel study.

SETTING:

Hospitals throughout England and Wales recruited patients referred by community paediatricians and other clinical colleagues.

PARTICIPANTS:

Children with neurodevelopmental problems aged from 3 years to 15 years 8 months who did not fall asleep within 1 hour of lights out or who had < 6 hours of continuous sleep. Before randomisation, patients meeting eligibility criteria entered a 4- to 6-week behaviour therapy period in which a behaviour therapy advice booklet was provided. Sleep was measured using sleep diaries and actigraphy. After this period the sleep diaries were reviewed to determine if the sleep problem fulfilled the eligibility criteria. Eligible participants were randomised and followed for 12 weeks.

INTERVENTIONS:

Melatonin or placebo capsules in doses of 0.5 mg, 2 mg, 6 mg and 12 mg for a period of 12 weeks. The starting dose was 0.5 mg and the dose could be escalated through 2 mg and 6 mg to 12 mg during the first 4 weeks, at the end of which the child was maintained on that dose.

MAIN OUTCOME MEASURES:

The primary outcome was total night-time sleep time (TST) calculated using sleep diaries at 12 weeks compared with baseline. Secondary outcome measures included TST calculated using actigraphy data, sleep-onset latency (SOL) (time taken to fall asleep), sleep efficiency, Composite Sleep Disturbance Index score, global measure of child's sleep quality, Aberrant Behaviour Checklist, Family Impact Module of the Pediatric Quality of Life Inventory (PedsQL™), the Epworth Sleepiness Scale, number and severity of seizures and adverse events. Salivary melatonin concentrations and association of genetic variants with abnormal melatonin production were also investigated.

RESULTS:

A total of 275 children were screened to enter the trial; 263 (96%) children were registered and completed the 4- to 6-week behaviour therapy period and 146 (56%) children were randomised, of whom 110 (75%) contributed data for the primary outcome. The difference in TST time between the melatonin and placebo groups adjusted for baseline was 22.43 minutes [95% confidence interval (CI) 0.52 to 44.34 minutes; p = 0.04] measured using sleep diaries. A reduction in SOL, adjusted for baseline, was seen for melatonin compared with placebo when measured by sleep diaries (-37.49 minutes, 95% CI -55.27 to -19.71 minutes; p < 0.0001) and actigraphy (-45.34 minutes, 95% CI -68.75 to -21.93 minutes; p = 0.0003). There were no significant differences between the two groups in terms of the reporting of adverse events. The results of other secondary outcomes favoured melatonin but were not statistically significant.

CONCLUSIONS:

On average, the children treated with melatonin slept 23 minutes longer than those in the placebo group; however, the upper limit of the confidence interval was less than 1 hour, the minimum clinically worthwhile difference specified at the outset of the trial. Melatonin is effective in reducing SOL in children with neurodevelopmental delay by a mean of 45 minutes; a value of 30 minutes was specified a priori to be clinically important. Future studies should be conducted over longer periods and directly compare different formulations of melatonin with conventional hypnotic and sedative medications. It would also be important to study groups of children with specific neurological disorders.

TRIAL REGISTRATION:

Current Controlled Trials ISRCTN05534585.

Objective. To assess the effectiveness and safety of melatonin in treating severe sleep problems in children with neurodevelopmental disorders.
Design. 12 week double masked randomised placebo controlled phase III trial.
Setting. 19 hospitals across England and Wales.
Participants. 146 children aged 3 years to 15 years 8 months were randomised. They had a range of neurological and developmental disorders and a severe sleep problem that had not responded to a standardised sleep behaviour advice booklet provided to parents four to six weeks before randomisation. A sleep problem was defined as the child not falling asleep within one hour of lights out or having less than six hours’ continuous sleep.
Interventions. Immediate release melatonin or matching placebo capsules administered 45 minutes before the child’s bedtime for a period of 12 weeks. All children started with a 0.5 mg capsule, which was increased through 2 mg, 6 mg, and 12 mg depending on their response to treatment.
Main outcome measures. Total sleep time at night after 12 weeks adjusted for baseline recorded in sleep diaries completed by the parent. Secondary outcomes included sleep onset latency, assessments of child behaviour, family functioning, and adverse events. Sleep was measured with diaries and actigraphy.
Results. Melatonin increased total sleep time by 22.4 minutes (95% confidence interval 0.5 to 44.3 minutes) measured by sleep diaries (n=110) and 13.3 (−15.5 to 42.2) measured by actigraphy (n=59). Melatonin reduced sleep onset latency measured by sleep diaries (−37.5 minutes, −55.3 to −19.7 minutes) and actigraphy (−45.3 minutes, −68.8 to −21.9 minutes) and was most effective for children with the longest sleep latency (P=0.009). Melatonin was associated with earlier waking times than placebo (29.9 minutes, 13.6 to 46.3 minutes). Child behaviour and family functioning outcomes showed some improvement and favoured use of melatonin. Adverse events were mild and similar between the two groups.
Conclusions. Children gained little additional sleep on melatonin; though they fell asleep significantly faster, waking times became earlier. Child behaviour and family functioning outcomes did not significantly improve. Melatonin was tolerable over this three month period. Comparisons with slow release melatonin preparations or melatonin analogues are required.
Trial registration ISRCT No 05534585.

Background and purposeThe purpose of this study was to compare two parent completed questionnaires, the Modified Simonds & Parraga Sleep Questionnaire (MSPSQ) and the Children's Sleep Habits Questionnaire (CSHQ), used to characterize sleep disturbances in young children with autism spectrum disorders (ASD). Both questionnaires have been used in previous work in the assessment and treatment of children with ASD and sleep disturbance.
Participants and methods
Parents/caregivers of a sample of 124 children diagnosed with ASD with an average age of six years completed both sleep questionnaires regarding children's sleep behaviors. Internal consistency of the items for both measures was evaluated as well as the correlation between the two sleep measures. A Receiver Operating Characteristics (ROC) curve analysis was also conducted to examine the predictive power of the MSPSQ.
Results
More than three quarters of the sample (78%) were identified as poor sleepers on the CSHQ. Cronbach's alpha for the items on the CSHQ was 0.68 and Cronbach's alpha for items on the MSPSQ was 0.67. The total scores for MSPSQ and CSHQ were significantly correlated (r=.70, p Conclusions
In this sample of children with ASD, sleep disturbances were common across all cognitive levels. Preliminary findings suggest that, similar to the CSHQ, the MSPSQ has adequate internal consistency. The two measures were also highly correlated. A preliminary cut off of 56 on the MSPSQ offers high sensitivity and specificity commensurate with the widely used CSHQ.

Aims: To investigate: (a) the sleep problems that young adults (YA) with ID might be experiencing taking into account their own perspective, (b) the relationship between the YA and their parents’ sleep and (c) the coincidence between the YA and their parents’ perception of the YA’s sleep. 

Method: Twelve adults aged 19–25 years and their parents were recruited from day centres. The parents completed sleep questionnaires regarding the YA sleep, their own sleep and daytime sleepiness. A structured interview was also held with nine of the YA, investigating their sleep habits. 

Results: A high prevalence of sleep problems was found in YA with ID with the most common being: day-time sleepiness, sleep onset delay and night waking. Parents underestimated their children’s overall sleep problems. There was an association between the parents’ and the YA sleep. Parents’ perception of their children’s sleep problems (i.e. parasomnias, night waking, sleep anxiety, duration and delay) coincided with the YA perception of their problems. 

Conclusion: Findings are in line with previous research and confirm the expectation that YA with ID experience sleep problems. The importance of including the individuals’ input when assessing complex states such as sleep was revealed. Future research is needed with a larger sample to confirm the results.

Visual hallucinations (VHs) in Parkinson" s disease (PD) can be a frequent and disturbing complication of the disease with 33% of PD patients undergoing long-term treatment experiencing VHs during the course of their illness. One line of evidence that is emerging as a possible risk factor in the occurrence of VHs is the sleep-wake cycle and sleep behavior in patients with PD. This study compared sleep patterns in a group of visually hallucinating Parkinson" s patients with a group of nonhallucinating PD patients and an age-matched control group. Nocturnal sleep was assessed by actigraphy and diaries, while daytime sleepiness and function were assessed by a battery of self-rating sleep questionnaires. Compared with the control group both patient groups had more sleep-related problems and significantly altered sleep patterns, as measured by both actigraphy and sleep questionnaires. Patients who hallucinated however slept less than nonhallucinating patients and also had increased awakenings after sleep onset, reduced sleep efficiency, and increased daytime sleepiness. We propose that VHs in some PD patients may be a symptom of poor sleep and prolonged daytime sleepiness, suggesting that arousal may play a role in the genesis of the hallucination phenomenon.

To determine if associations between presleep arousal and sleep disturbance reported in adults are also characteristic of children.

DESIGN:

Linear regression analyses examined whether somatic and cognitive presleep arousal predicted sleep disturbances.

SETTING:

Two inner city schools, London, U.K.

PARTICIPANTS:

One hundred twenty-three children aged 8 to 10 years, 49% boys, from ethnically diverse backgrounds.

INTERVENTIONS:

N/A.

MEASUREMENTS AND RESULTS:

Children completed the Sleep Self-Report and the Pre-sleep Arousal Scale (comprising somatic and cognitive subscales). Parents completed the Child Sleep Habits Questionnaire. In separate models, both somatic (beta = 0.44, P < 0.001, R2 = 0.19) and cognitive (beta = 0.48, P < 0.001, R2 = 0.23) presleep arousal predicted the Sleep Self-Report total score. Somatic (beta = 0.28, P <.01, R2 = 0.08) and cognitive (beta = 0.37, P < 0.001, R2 = 0.14) arousal also predicted Sleep Self-Report insomnia items in separate models. These results were partially replicated when using the parent report of the Child Sleep Habits Questionnaire. When somatic and cognitive items were included in the same models, cognitive but not somatic arousal significantly predicted (most definitions of) sleep disturbance.

CONCLUSIONS:

Cognitive, and to a lesser extent somatic, presleep arousal appears to be associated with sleep disturbances in children. This suggests that further research into cognitive aspects of sleep disturbance in children is warranted-as incorporating this information into treatments may eventually prove fruitful.

To describe parent-reported and actigraphically assessed sleep patterns and sleep disorders in stimulant-medication-free children with attention-deficit/hyperactivity disorder (ADHD), divided according to ADHD subtype.
 

PARTICIPANTS:

Seventy-one stimulant-medication-free children with a clinical diagnosis of ADHD (8 girls; mean 8.8 years (SD 2.6), range 3-15 years) recruited from child psychiatry clinics.

MEASUREMENTS:

ADHD: ADHD Rating Scale DSM IV- Home Version to subdivide children into those with predominantly attention deficit, mainly hyperactivity, and those with both aspects equally. Sleep: Parent-completed sleep diary, clinical history, and 5 nights of actigraphy.

RESULTS:

Parents reported a wide range of frequently occurring sleep disturbances in their children. However, the objective sleep patterns were not abnormal and did not differ between the ADHD subtypes, and objective sleep patterns did not predict ADHD severity. There was poor correspondence between parent report and actigraphy. Careful clinical consideration of each case suggested that sleep disorders may be widespread in this group of children; only 8 of the 71 children had no discernable likely sleep disorder. Symptoms of sleep-disordered breathing, sleeplessness and reports of restless legs featured prominently.

CONCLUSIONS:

Parents of children with ADHD may not be accurate reporters of their children's sleep pattern and/or the sleep disturbances that come to parents' attention are not best detected by actigraphy. Results highlight the prominence of parent-reported sleep disturbance in children with ADHD and the need for clinicians to routinely screen for the presence of sleep disorders and assess detailed sleep physiology where indicated.

The present study sought to describe the profile of sleep disturbance reported in children with autistic spectrum disorders (ASDs) and to document any sleep disorders underlying reports of sleeplessness. Sixty-nine children aged 5 to 16 years (mean 9 years 4 months, SD 2 years 7 months; 14 females) with an ASD were assessed by detailed sleep histories taken from parents, the Simonds and Parraga Sleep Questionnaire, a 2-week sleep diary, and actigraphs worn by the child for five nights. Parent-reported sleeplessness featured prominently (64%). Sleep disorders underlying the sleeplessness were most commonly behavioural (i.e. to do with inappropriate sleep-related behaviours), although sleep-wake cycle disorders and anxiety-related problems were also seen. In addition, the sleeplessness patterns of a large minority of children could not be classified by conventional diagnostic criteria. Sleep patterns measured objectively did not differ between those children with or without reported sleeplessness, but the sleep quality of all children seemed to be compromised compared with normal values.

Background. Little is known about the psychological and behavioural consequences of road traffic accidents for children. The study aimed to determine the outcome of road traffic accidents on children and their mothers.

Method. A 1-year cohort study of consecutive child attenders aged 5–16 years at an Accident and Emergency Department. Data were extracted from medical notes and from interview and self-report at baseline, 3 months and 6 months.

Results. The children had an excellent physical outcome. Fifteen per cent suffered acute stress disorder; 25% suffered post-traumatic stress disorder at 3 months and 18% at 6 months. Travel anxiety was frequent. Post-traumatic consequences for mothers were common.

Conclusion. Psychological outcome was poor for a minority of children and associated with disability, especially for travel. There were significant family consequences. There is a need for changes in clinical care to prevent, identify and treat distressing and disabling problems.

Background: Settling and night waking problems are particularly prevalent, persistent, and generally considered difficult to treat in children with a learning disability, although intervention trials are few. Scarce resources, however, limit access to proven behavioural treatments.

Aims: To investigate the efficacy of a media based brief behavioural treatment of sleep problems in such children by comparing (1) face-to-face delivered treatment versus control and (2) booklet delivered treatment versus controls.

Methods: The parents of 66 severely learning disabled children aged 2–8 years with settling and/or night waking problems took part in a randomised controlled trial with a wait-list control group. Behavioural treatments were presented either conventionally face-to-face or by means of a 14 page easy to read illustrated booklet. A composite sleep disturbance score was derived from sleep diaries kept by parents.

Results: Both forms of treatment were almost equally effective compared with controls. Two thirds of children who were taking over 30 minutes to settle five or more times per week and waking at night for over 30 minutes four or more times per week improved on average to having such settling or night waking problems for only a few minutes or only once or twice per week (H = 34.174, df = 2, p<0.001). These improvements were maintained after six months.

Conclusions: Booklet delivered behavioural treatments for sleep problems were as effective as face-to-face treatment for most children in this population.

Objectives. The study aimed to assess the mental state of mothers and fathers following successful behavioural intervention for sleep problems in such children.

Design. A randomized controlled trial of behavioural interventions for sleep problems.

Methods. Parents of 15 children with severe intellectual disabilities, severe sleep problems, and challenging daytime behaviour received treatment for the child's sleep problem and were compared with 15 controls who received no treatment. Parental stress, sleepiness, locus of control, perceived control, and satisfaction with aspects of sleep were assessed.

Results. Successful treatment benefited the mothers, reducing stress, increasing perceived control and making them more satisfied with their sleep, their child's sleep, and their ability to cope with their child's sleep. Positive effects in the fathers were limited to increased satisfaction with their own sleep and their child's sleep; fathers tended to feel less control following treatment. Maternal sleepiness and perceived control, and aspects of parental satisfaction showed improvements in both the treatment and control groups.

Conclusion. The effects of childhood sleep problems, and their resolution using behavioural interventions, may be different in mothers and fathers. This highlights the need to assess all family members in order to gain a greater understanding of how best to help families as a whole. The improvements in both control and treatment groups indicate that there may be non-specific effects of taking part in the study that played a therapeutic role.

Objectives: To assess the efficacy of treatments for settling problems and night waking in young children.
Design: A systematic review of randomised controlled trials of interventions for settling problems and night waking in young children.
Setting: Electronic bibliographic databases and references on identified papers, hand searches, and personal contact with specialists.
Subjects: Children aged 5 years or less who had established settling problems or night waking.
Interventions: Interventions had to be described and a placebo, waiting list, or another intervention needed to have been used as a comparison. Interventions comprised drug trials or non-drug trials.
Main outcome measures: Number of wakes at night, time to settle, or number of nights in which these problems occurred.
Results: Drugs seemed to be effective in treating night waking in the short term, but long term efficacy was questionable. In contrast, specific behavioural interventions showed both short term efficacy and possible longer term effects for dealing with settling problems and night waking.
Conclusions: Given the prevalence and persistence of childhood sleep problems and the effects they can have on children and families, treatments that offer long lasting benefits are appealing and these are likely to be behavioural interventions.

The study aimed to investigate a group of children with severe learning disabilities, challenging daytime behaviour, and severe sleep problems to see if successful behavioural treatment of the children's sleep problems resulted in reduced daytime challenging behaviour as reported by mothers and teachers.

A randomised controlled trial of behavioural interventions for the children's sleep problems was conducted (N = 30). The intervention group received an individually tailored behavioural programme and were supported by telephone calls from the therapist. Baseline assessments of the children's behaviour were made using the Aberrant Behavior Checklist and were repeated 1 month and 3 months after the start of intervention.

There were no behavioural changes that were specific to children in the treatment group. However, improvements in some behaviours were seen in both the intervention and the control group at the 1-month and 3-month assessments and there was agreement between mothers' and teachers' reports for many of these changes.

The results suggest that nonspecific effects of participating in the study (including an increased sleep duration, which was seen in both groups), rather than resolution of sleep problem per se, may have a beneficial effect on child behaviour and these factors need to be identified for therapeutic use.

Objectives. Children with severe learning disabilities were identified by parental report as having a severe sleep problem (according to research criteria). A subgroup were considered by their parents to have no difficulty with their sleep pattern. The study aimed to investigate why sleeping problems of equal intensity should be a problem for one group of parents and not for another group, with a view to (a) establishing whether the families differed in the extent the child's sleep pattern affected the family and (A) identifying parent and child factors which may affect the parents' ability to tolerate the sleep problem.

Design. Three groups (matched for sex, age and duration of sleep problem if appropriate) of 13 were compared: children with no sleep problem (NSP), children with a recognized sleep problem (SP), and children with an unrecognized sleep problem (USP).

Methods. Mothers completed questionnaire assessments of the children's sleep and daytime behaviour and the mothers' sleepiness, coping style, stress and perceived control.

Results. The USP mothers and children are similar to the NSP mothers and children. Compared to the SP group, the mothers are less stressed, have increased perceived control and the children have fewer daytime behaviour problems. USP mothers and SP mothers are equally dissatisfied with their child's, and their own, sleep pattern.

Conclusions. USP mothers do not unrealistically deny that their child has a sleep problem but there are protective factors within the child and the parent which enable the mothers to tolerate sleep problems and suffer less negative effects. Implications for interventions arc considered.

Children with sleep problems present serious management problems to their parents. Such children are also more likely to have additional problems, behavioural disturbance being particularly common. This randomized controlled trial of behavioural interventions for the children's sleep problems was conducted to explore the efficacy and mechanisms of treatment in children with the most extreme forms of problems: severe learning disabilities, severe sleep problems and severe daytime challenging behaviour.

Fifteen index families received behavioural advice for the child's sleep problem and were compared with 15 matched controls who received no such advice. Repeat assessments of the children's and mothers’ sleep were made by parental report as well as actometry. Objective changes in the children's sleep quality and quantity were not seen after treatment. However, mothers in the treatment group reported improvements in the children's sleep problems and had an increased sleeping time themselves following treatment.

The results indicate that sleep problems can be successfully treated in this group of children, although the mechanisms of treatment may not be as direct as supposed. This has implications for understanding of sleep problems in children with learning disabilities and also for clinical practice, when considering ways of offering help to these highly ‘challenged’ families.

By means of a comprehensive, standardised, parental enquiry sleep disturbance was assessed in 79 schoolchildren with epilepsy under local, nonspecialized paediatric care and 79 age and sex matched children from the general population. Sleep disorders were grouped into five types. The behaviour of each child with epilepsy was assessed using the Conners Revised Parent Rating Scale. Epilepsy variables were also carefully assessed. The main statistically significant findings were: 1. much higher rates of generally disturbed sleep and behaviour in the children with epilepsy compared with the other children, 2. strong associations between sleep disorder (especially poor quality sleep) and behavioural disturbance, 3. an association between high seizure frequency and anxieties about sleep.

The results highlight the need for more attention to sleep disturbance in children with cerebral dysfunction such as epilepsy. Further research needs to aim at explaining underlying mechanisms. Physiological sleep studies should provide further insights.