Dr Georgia Cook

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.

Aims: To explore school nurses’ experiences during the Covid-19 pandemic, focusing on: methods enabling service delivery; factors affecting school nurses’ ability to support children; work with the interdisciplinary team; what pandemic-related practice changes should endure.

Design/method: The study took a pragmatic approach.  A purposive sample of 20 school nurses participated across ten virtual focus groups and one-to-one interviews.. Data were analysed using reflexive thematic analysis.

Results: Four overarching themes were identified: the impact and legacy of Covid-19 on children and families’ health; the rapid restructure of service delivery; workforce challenges; the school nurse profile before, during, and after the pandemic.

Conclusion: Recommendations are made for considered use of virtual modes to enhance rather than replace in-person practice; building a robust evidence base that can inform future commissioning; clear guidance regarding the boundaries of school nursing practice in the context of increasing workloads; investing in the school nurse workforce going forwards.

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.

School nurses are public health specialists with an integral role in the safeguarding of children and young people. This study gathered information about school nurses’ approaches to overcome practice restrictions as a result of COVID-19. A cross-sectional survey was administered to school nurses across the United Kingdom. Quantitative data were analysed descriptively. Qualitative data (free-text responses to open-ended questions) were analysed using reflexive thematic analysis. Seventy-eight participant responses were included in the analysis. Quantitative data highlighted increased workloads; decreased contact with service users; and difficulties in identifying safeguarding needs and working with known vulnerable children. Through qualitative data analysis, five themes were identified: a move from preventive to reactive school nursing; professional challenges of safeguarding in the digital context; the changing nature of inter-professional working; an increasing workload; and reduced visibility and representation of the child. The findings call for advocacy by policymakers and professional organisations representing school nurses to enable this professional group to lead in the evolving public health landscape; for commissioning that recognises the school nurse as a specialist public health practitioner; and for sufficient numbers of school nurses to respond to the emergent and ongoing health needs of children and young people.

Aim: To examine how school nurse practice evolved as a result of the Covid-19 pandemic.

Design: A scoping review of international literature, conducted and reported in line with Arksey and O'Malley’s (2005) framework.

Data sources: Searches were conducted in September 2021. Ten databases were searched: The British Nursing Database, CINAHL, Cochrane Library, Consumer Health Database, Health and Medicine, Nursing and Allied Health, Public Health, PsycINFO, PubMed and Web of Science. Relevant grey literature was identified through hand searching.

Review methods: A minimum of three reviewers independently screened articles and two reviewers independently undertook data extraction, with any decisions made collaboratively with the wider team. Much of the literature was not empirical work and so it was not possible to apply a traditional quality appraisal framework.

Results: Searches identified 554 papers (after deduplication) which were screened against title and abstract. Following full-text review, 38 articles underwent data extraction and analysis. The review findings highlighted that school nurses adapted their practice to ensure they were able to continue providing their formal and informal school health offer to children, young people and their families, and continued working closely with the multidisciplinary team. In addition, the expanded public health role generated by Covid-19 for school nurses’ work was considerable, multi-layered and added to their routine workload. School nurses displayed resilience, adaptability and creativity in their response to delivering services during Covid-19.

Conclusion: School nurses took on a leading public health role during the Covid-19 pandemic. Some developments and practices were highlighted as beneficial to continue beyond the pandemic. However, formal evaluation is needed to identify which practices may merit integration into routine practice. Continued investment in staff and infrastructure will be essential to ensuring school nurses continue to expand their practice and influence as public health experts.

Background. 
Childhood epilepsy is a serious and common neurological condition and can have life-long consequences and its impact can pervade all aspects of family life. Whilst the medical management of seizures is important, much of the day-to-day home management of epilepsy is invisible to people external to the family, including health care professionals, and parents’/caregivers’ fears and concerns can go unacknowledged and unaddressed by health care professionals.

Objective. 
This objective of this review was to examine parents’/caregivers’ fears and concerns regarding their child’s epilepsy, the impact of these fears and concerns on family life, the social and emotional well-being of parents/caregivers and any factors which mitigate these fears and concerns.

Design. 
Scoping review using a modified version of Arksey and O’Malley’s framework.

Data sources. 
Relevant studies were identified using key search terms in Scopus, Medline, CINAHL and PsychInfo databases in March 2021 with hand checking of reference lists. Search terms were developed using population (parents/caregivers of children aged ≤ 18 years with epilepsy, families); concept (parents’/caregivers’ fears, concerns, anxiety about their child’s epilepsy); and context (any setting). A further search was run in April 2022. Other inclusion criteria: English language empirical studies, 2010–2021.

Study appraisal methods. 
A minimum of two reviewers independently screened articles and undertook data extraction and decisions were consensually made.

Methodological quality appraisal was undertaken using the Mixed Methods Appraisal Tool v2018. A data extraction table was created to chart all studies. The conduct and reporting of this study followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidance for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) (S1 Table). There is no published copy of the review protocol.

Main findings. 
The search identified a total of 4077 papers (after duplicates were removed) of which 110 were assessed for eligibility. Twenty-four papers published between 2010–2021 were included in the review and each paper was treated as a separate study. The review findings indicate that parents’/caregivers’ fears and concerns stem from more than their child’s seizures and relate to many wider aspects of family life. These fears and concerns had far-reaching influences on their parenting/caregiving, and on the lifestyle and activities of their child and their family. What was less evident was what parents/caregivers wanted in terms of support or how they thought health professionals could acknowledge and/or allay their fears and concerns. The discussion is framed within the compassion-focused therapy model as a basis for generating new thinking about the impact of these fears and concerns and the need for a new agenda for clinical consultations in childhood epilepsy.

Conclusions. 
The review concludes with a proposal that a more compassionate agenda underpins the dialogue between parents/caregivers and clinicians to encompass and mitigate the wider emotional, psychosocial, and societal threats that impact on the parent/caregivers of children with epilepsy.

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.

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.