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

IntroductionRoutines, particularly at bedtime are often recommended as a first line treatment for many common child sleep problems (CSPs). Research has demonstrated the benefits of consistent routines for child sleep in a number of domains, however many parents report using routines inconsistently. Research has found that positive caregiver feelings about bedtime routines can motivate their implementation, while negative feelings have been associated with reduced use of routines. Caregiver feelings about sleep-related routines could also affect child sleep directly through the pre-sleep emotional climate experienced by the child and could have repercussions for caregiver mental health. However the range of caregiver feelings in relation to their children’s sleep-related routines has not been fully explored. This study therefore set out to answer the research question ‘What feelings do parents experience in relation to their sleep-related routines with their toddlers?’MethodThis was a qualitative study based on semi-structured online interviews with 21 mothers of 1–3 year olds. Parents were asked to narrate the sleep-related practices they typically used over the 24-hour sleep/wake cycle with their toddlers and how they felt during and about their routines. Data were analysed using reflexive thematic analysis.ResultsNine themes were identified, two with associated subthemes. Participants reported positive feelings of happiness and enjoyment, relaxation and freedom, and negative feelings of guilt, sadness, restriction, frustration, worry and uncertainty about their sleep-related routines. Many also reported a neutral feeling of acceptance. DiscussionCaregivers can experience a wide range of positive and negative feelings in relation to their sleep-related routines with their 1–3 year olds, which may be beneficial or detrimental to both their child’s sleep and their own mental health. Assessment of routines and advice on implementation should take account of caregivers’ emotional experiences and be tailored to individual families’ values, preferences and priorities.1–9ReferencesBraun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology, 2006;3(2):77–101. https://doi.org/10.1191/1478088706qp063oaBraun V, Clarke V. Thematic analysis: A practical guide. SAGE. 2022.Dahl RE. The regulation of sleep and arousal: development and psychopathology. Development and Psychopathology, 1996;8(1):3–27. https://doi.org/10.1017/S0954579400006945Hoyniak CP, Bates JE, McQuillan ME, Albert LE, Staples AD, Molfese VJ, Rudasill KM, Deater-Deckard K. The Family Context of Toddler Sleep: Routines, Sleep Environment, and Emotional Security Induction in the Hour before Bedtime. Behavioral Sleep Medicine, 2021;19(6):795–813, https://doi.org/10.1080/15402002.2020.1865356Jones CHD, Ball HL. Napping in English preschool children and the association with parents’ attitudes. Sleep Medicine, 2013;14(4):352–358. https://doi.org/10.1016/j.sleep.2012.12.010Jones C, Ball H. Exploring socioeconomic differences in bedtime behaviours and sleep duration in English preschool children. Infant and Child Development, 2014;23(5):518–531. https://doi.org/10.1002/icd.1848Kitsaras G, Goodwin M, Kelly M, Pretty I, Allan J. Perceived barriers and facilitators for bedtime routines in families with young children. Children, 2021;8(50). https://doi.org/10.3390/children8010050Mindell J, Williamson A. Benefits of a bedtime routine in young children: Sleep, development, and beyond. Sleep Medicine Reviews, 2018;40:93–108. https://doi.org/10.1016/j.smrv.2017.10.007Sundnes A, Andenaes A. Parental regulation of infant sleep: Round-the-clock efforts for social synchronization. Infant Mental Health Journal, 2016;37(3):247–258. https://doi.org/10.1002/imhj.21568

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.

IntroductionSleep and epilepsy have an established bidirectional 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 was 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 (SC) and SC augmented with a novel, tailored parent-led CASTLE Online Sleep Intervention (COSI) that incorporates evidence-based behavioural components.Methods and analysesCASTLE Sleep-E is a UK-based, multicentre, open-label, active concurrent control, randomised, parallel-group, pragmatic superiority trial. A total of 110 children with Rolandic epilepsy will be recruited in outpatient clinics and allocated 1:1 to SC or SC 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 of trial participation and managing sleep with Rolandic epilepsy.Ethics and disseminationThe CASTLE Sleep-E protocol was approved by the Health Research Authority East Midlands (HRA)–Nottingham 1 Research Ethics Committee (reference: 21/EM/0205). Trial results will be disseminated to scientific audiences, families, professional groups, managers, commissioners and policymakers. Pseudo-anonymised individual patient data will be made available after dissemination on reasonable request.Trial registration numberISRCTN13202325.

[...]there is a wide array of outcome variables which will be imperative to consider when trying to determine the significance of any variations in napping.

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.

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.

The objective of this study was to explore the behaviour, including sleep patterns, of children with neurofibromatosis type 1 (NF1). For this purpose we designed a cross‐sectional descriptive survey conducted by postal enquiry with telephone follow‐up. Simonds and Parraga's sleep questionnaire and the Strength and Difficulties Questionnaire were used to screen sleep patterns and behaviours respectively. Information was obtained for 64 children (39 male, mean age 10y 7mo, SD 4y 1mo, range 3 to 18y; 57% response rate). There were increased numbers of children with NF1 achieving scores in the borderline and abnormal range for ratings of peer problems (p<0.001), hyperactivity (p<0.001), emotional symptoms (p<0.001), and conduct disorder (p<0.05). Total difficulties score was also high (p<0.001) in the NF1 group. Only one group of sleep problems, parasomnias (in particular sleepwalking and sleep terrors), had a higher occurrence (p≤0.05) in the NF1 group than in the general population. Within the NF1 group, conduct problems (p≤0.05), hyperactivity (p≤0.01), emotional problems (p≤0.01), and the total difficulties score (p≤0.01) were all significantly higher in children with frequent sleep disturbance. We conclude that NF1 is associated with sleep and behavioural problems in a high proportion of children. Psychiatric conditions, e.g. attention‐deficit‐hyperactivity disorder, may be under‐diagnosed on a large scale in children with NF1, and the use of simple screening tools in clinical settings may prove beneficial.

Abstract 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.