The aim of this study was to examine aspects of children’s health literacy; the information sources they were accessing, their information preferences, their perceived understanding of and their reported information needs in relation to COVID-19. An online survey for children aged 7–12 years of age and parent/caregivers from the UK, Sweden, Brazil, Spain, Canada and Australia was conducted between 6th of April and the 1st of June 2020. The surveys included demographic questions and both closed and open questions focussing on access to and understanding of COVID-19 information. Descriptive statistics and qualitative content analysis procedures were conducted. The findings show that parents are the main source of information for children during the pandemic in most countries (89%, n = 347), except in Sweden where school was the main source of information. However, in many cases parents chose to shield, filter or adapt their child’s access to information about COVID-19, especially in relation to the death rates within each country. Despite this, children in this study reported knowing that COVID-19 was deadly and spreads quickly. This paper argues for a community rather than individual approach to addressing children’s health literacy needs during a pandemic.

Objectives: To gain insight into children’s health-related knowledge and understanding of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV2) and COVID-19, and measures adopted to mitigate transmission. Design: A child-centred qualitative creative element embedded in an online mixed-methods survey of children aged 7–12 years. Setting: Children participated in the study in six countries – the UK, Australia, Sweden, Brazil, Spain and Canada. Method: A qualitative creative component, embedded in an online survey, prompted children to draw and label a picture. Children were recruited via their parents using the researchers’ professional social media accounts, through known contacts, media and websites from health organisations within each country. Analysis of the form and content of the children’s pictures took place. Results: A total of 128 children (mean age 9.2 years) submitted either a hand-drawn ( n = 111) or digitally created ( n = 17) picture. Four main themes were identified which related to children’s health-related knowledge of (1) COVID-19 and how it is transmitted; (2) measures and actions to mitigate transmission; (3) places of safety during the pandemic; and (4) children’s role in mitigating COVID-19 transmission. Conclusion: Children’s pictures indicated a good understanding of the virus, how it spreads and how to mitigate transmission. Children depicted their actions during the pandemic as protecting themselves, their families and wider society.

Aim: To describe how children in Sweden accessed and perceived information about SARS-CoV2 and Covid-19 during the first phase of the outbreak. Methods: This study is a substudy of an international cross-sectional online mixed methods survey examining elements of children’s health literacy in relation to Covid-19. The survey included multiple-choice questions, open-ended questions and drawings and collected information from 50 Swedish children (7–12 years). Data were analysed concurrently on a descriptive level using statistics and content analysis. Quantitative and qualitative data, including the drawings, were considered equally important and resulted in six categories, illuminating how children accessed and perceived information about the pandemic. Results: The survey showed that children accessed information mainly from school but also from TV. They preferred information from reliable sources. Children reported the information they accessed as easy to understand and it prompted them to ask new questions. They reported they knew a lot about the pandemic, for example, the potential danger to themselves and others and how to act to protect themselves and others. They perceived the pandemic as an intrusion on their lives. Conclusions: This study indicates that Swedish children between 7 and 12 years old were well informed about SARS-CoV2 and Covid-19 during the first phase of the pandemic. School was shown to be an important source of information. The children could explain how to act to protect themselves and others from becoming infected by the virus.

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.

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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.

BackgroundFailure to recognize and respond to clinical deterioration in a timely and effective manner is an urgent safety concern, driving the need for early identification systems to be embedded in the care of children in hospital. Pediatric early warning systems (PEWS) or PEW scores alert health professionals (HPs) to signs of deterioration, trigger a review and escalate care as needed. PEW scoring allows HPs to record a child’s vital signs and other key data including parent concern.AimThis study aimed to explore the experiences and perceptions of parents about the acceptability of a newly implemented electronic surveillance system (the DETECT surveillance system), and factors that influenced acceptability and their awareness around signs of clinical deterioration and raising concern.MethodsDescriptive, qualitative semi-structured telephone interviews were undertaken with parents of children who had experienced a critical deterioration event (CDE) (n = 19) and parents of those who had not experienced a CDE (non-CDE parents) (n = 17). Data were collected between February 2020 and February 2021.ResultsQualitative data were analyzed using generic thematic analysis. Analysis revealed an overarching theme of trust as a key factor that underpinned all aspects of children’s vital signs being recorded and monitored. The main themes reflect three domains of parents’ trust: trust in themselves, trust in the HPs, and trust in the technology.ConclusionParents’ experiences and perceptions of the acceptability of a whole-hospital, pro-active electronic pediatric early warning system (The DETECT system) were positive; they found it acceptable and welcomed the use of new technology to support the care of their child.

Children attending hospital for radiological procedures can experience uncertainty, anxiety and distress; this can result in sub-optimal experiences for children, poor scan quality and the need for radiological procedures to be rescheduled or sedation to be used. The preparation and education of children before clinical procedures has been shown to have a positive influence on procedural outcomes. This scoping review aimed to locate and examine the evidence relating to non-invasive interventions and methods to prepare, educate and familiarise children for radiological procedures within a healthcare setting. A comprehensive search strategy identified 36 articles. A narrative synthesis approach was adopted to make sense of the key findings. Studies investigated a range of radiological procedures (MRI, plain radiographs, CT, fluoroscopy and Micturating cystourethrogram) using a wide range of interventions (smartphone applications, storybooks, videos, mock scanners) which varied by method, mode of delivery and target audience. The outcomes used to evaluate the value and impact of the interventions are wide, varied and inconsistently applied making it difficult to judge which interventions offer the optimal impact on scan quality, scan completion and children’s experiences. This review highlights that there is a need to further understand which specific elements of the non-invasive interventions ‘work best’ for children. There is a need for consistency on the outcomes measured and for these measures to include child-centred outcomes alongside scan quality and length of radiological procedure.