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There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used to involve them in PPIE; and the reasons presented for their involvement in PPIE and what happens as a result. We performed a scoping review to identify, synthesise and present what is known from the literature about patient and public involvement and engagement activities with children and young people in health related research. Relevant studies were identified by searches in Scopus, Medline, CINAHL, Cochrane and PsychInfo databases, and hand checking of reference lists and grey literature. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was used as a framework to collate the data. Two reviewers independently screened articles and decisions were consensually made. A total of 9805 references were identified (after duplicates were removed) through the literature search, of which 233 full-text articles were assessed for eligibility. Forty studies published between 2000 and 2019 were included in the review. The review reveals ambiguities in the quality of reporting of PPIE with children with clear reporting on demographics and health conditions. The review found that children and young people were commonly involved in multiple stages of research but there was also significant variation in the level at which children and young people were involved in PPIE. Evaluation of the impact of children and young people's involvement in PPIE was limited. Consultation, engagement and participation can all offer children and young people worthwhile ways of contributing to research with the level, purpose and impact of involvement determined by the children and young people themselves. However, careful decisions need to be made to ensure that it is suited to the context, setting and focus so that the desired PPIE impacts are achieved. Improvements should be made to the evaluation and reporting of PPIE in research. This will help researchers and funders to better understand the benefits, challenges and impact of PPIE with children and young people on health research.

Background Clinical placement is an essential component of nursing education, providing students with the opportunity to apply theoretical knowledge to practice. However, challenges such as lack of supervision and passive involvement in tasks can hinder the learning experience. Supplementing clinical placement with simulation-based training (SBT) has been explored as a potential solution, though this approach has been underexplored within primary care. This study aimed to explore the educational value of a supplemental SBT course for nursing students during primary care placement, as well as the adaption of this approach to a primary care setting. Methods A qualitative descriptive study was conducted at a medical education and simulation academy in Denmark. Sixth-semester nursing students on placement in primary care were invited to participate. The intervention consisted of a three-day simulation course covering core nursing competencies and common clinical conditions encountered within primary care. Simulation adopted a standardised patient approach. Data was collected using focus group interviews, which was analysed using inductive thematic analysis. Results Thirty-one nursing students participated in the study. Seven themes emerged from the analysis, including perceptions, educational value, simulation adjustments to primary care, educators’ competencies, learning needs within primary care, challenges of clinical placement and career guidance. Generally, participants perceived the intervention positively, appreciating its relevance to their clinical placement and its educational impact in this context. Participants also provided insights into the adaptation of SBT to a primary care setting, as well as nursing students’ learning needs within this context. Conclusion The findings indicate that the intervention had a positive impact on participant competencies within this context and enhanced their clinical practice within primary care. Furthermore, the results inform educators on how to effectively employ primary care-related SBT. Overall, this study supports the need for an increased application of SBT within primary care. Trial registration Not relevant.

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

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 6 th of April and the 1 st 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.

Background Provision that aims to promote the social, emotional, and mental wellbeing of children and young people (including their mental health) is increasingly implemented in education settings. As researchers, policymakers, and practitioners explore the complexities of promotion and prevention provision in practice, it is critical that we include and amplify children and young people’s perspectives. In the current study, we explore children and young people’s perceptions of the values, conditions, and foundations that underpin effective social, emotional, and mental wellbeing provision. Methods We engaged in remote focus groups with 49 children and young people aged 6–17 years across diverse settings and backgrounds, using a storybook in which participants constructed wellbeing provision for a fictional setting. Analysis Using reflexive thematic analysis, we constructed six main themes presenting participants’ perceptions: (1) recognising and facilitating the setting as a caring social community; (2) enabling wellbeing to be a central setting priority; (3) facilitating strong relationships with staff who understand and care about wellbeing; (4) engaging children and young people as active partners; (5) adapting to collective and individual needs; and (6) being discreet and sensitive to vulnerability. Conclusions Our analysis presents a vision from children and young people of an integrated systems approach to wellbeing provision, with a relational, participatory culture in which wellbeing and student needs are prioritised. However, our participants identified a range of tensions that risk undermining efforts to promote wellbeing. Achieving children and young people’s vision for an integrated culture of wellbeing will require critical reflection and change to address the current challenges faced by education settings, systems, and staff.

The COVID-19 pandemic caused far-reaching societal changes, including significant educational impacts affecting over 1.6 billion pupils and 100 million education practitioners globally. Senior school leaders were at the forefront and were exposed to particularly high demands during a period of “ crisis leadership ”. This occupation were already reporting high work-related stress and large numbers leaving the profession preceding COVID-19. This cross-sectional descriptive study through the international COVID-Health Literacy network aimed to examine the well-being and work-related stress of senior school leaders (n = 323) in Wales (n = 172) and Northern Ireland (n = 151) during COVID-19 (2021–2022). Findings suggest that senior school leaders reported high workloads (54.22±11.30 hours/week), low well-being (65.2% n = 202, mean WHO-5 40.85±21.57), depressive symptoms ( WHO-5 34.8% n = 108) and high work-related stress (PSS-10: 29.91±4.92). High exhaustion (BAT: high/very high 89.0% n = 285) and specific psychosomatic complaints (experiencing muscle pain 48.2% n = 151) were also reported, and females had statistically higher outcomes in these areas. School leaders were engaging in self-endangering working behaviours; 74.7% (n = 239) gave up leisure activities in favour of work and 63.4% (n = 202) sacrificed sufficient sleep, which was statistically higher for females. These findings are concerning given that the UK is currently experiencing a “ crisis ” in educational leadership against a backdrop of pandemic-related pressures. Senior leaders’ high attrition rates further exacerbate this, proving costly to educational systems and placing additional financial and other pressures on educational settings and policy response. This has implications for senior leaders and pupil-level outcomes including health, well-being and educational attainment, requiring urgent tailored and targeted support from the education and health sectors. This is particularly pertinent for Wales and Northern Ireland as devolved nations in the UK, who are both implementing or contemplating major education system level reforms, including new statutory national curricula, requiring significant leadership, engagement and ownership from the education profession.

Young people with Duchenne muscular dystrophy (DMD) commonly experience osteoporosis and fractures which can lead to chronic pain and reduced quality of life. Initiating IV bisphosphonate therapy prior to first fracture may be a logical primary preventative approach given the extent and related morbidity of osteoporosis, although there is limited evidence for this. This qualitative study using semi-structured interviews and focus groups, aimed to explore the opinions and prospective acceptability of young people with DMD, parents and health professionals in the UK on initiating bisphosphonate therapy prior to first fracture. Four boys with DMD (aged 15–17 years) and 20 parents participated in semi-structured interviews. Twenty-seven health professionals involved in the care of young people with DMD participated in focus groups. A framework analysis was conducted. Three categories were identified which represented a continuum of opinions on the endorsement of preventative bisphosphonate therapy: 1) “It buys them time”, endorsement of preventative bisphosphonate therapy; 2) Uncertainty and the importance of “choice”; and 3) “Worry about... starting bisphosphonates even earlier”, not endorsing the use of preventative bisphosphonate therapy. Young people with DMD and parents discussed a range of opinions about the prospective acceptability of IV bisphosphonate as preventative therapy, highlighting the importance of family choice before initiation of therapy. Health professionals called for future research exploring the risks and benefits of preventative IV bisphosphonate therapy for young people with DMD to inform clinical practice.

Children with profound cognitive impairment (PCI) are a heterogenous group who often experience frequent and persistent pain. Those people closest to the child are key to assessing their pain. This mixed method study aimed to explore how parents acquire knowledge and skills in assessing and managing their child’s pain. Eight mothers completed a weekly pain diary and were interviewed at weeks 1 and 8. Qualitative data were analysed using thematic analysis and the quantitative data using descriptive statistics. Mothers talked of learning through a system of trial and error (“learning to get on with it”); this was accomplished through “learning to know without a rule book or guide”; “learning to be a convincing advocate”; and “learning to endure and to get things right.” Experiential and reflective learning was evident in the way the mothers developed a “sense of knowing” their child’s pain. They drew on embodied knowledge of how their child usually expressed and responded to pain to help make pain-related decisions. Health professionals need to support mothers/parents to develop their knowledge and skills and to gain confidence in pain assessment and they should recognise and act on the mothers’ concerns.

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.

Infection, particularly in the first 5 years of life, is a major cause of childhood deaths globally, many deaths from infections such as pneumonia and meningococcal disease are avoidable, if treated in time. Some factors that contribute to morbidity and mortality can be modified. These include organisational and environmental factors as well as those related to the child, family or professional. Examine what organizational and environmental factors and individual child, family and professional factors affect timing of admission to hospital for children with a serious infectious illness. Systematic review. Key search terms were identified and used to search CINAHL Plus, Medline, ASSIA, Web of Science, The Cochrane Library, Joanna Briggs Institute Database of Systematic Review. Primary research (e.g. quantitative, qualitative and mixed methods studies) and literature reviews (e.g., systematic, scoping and narrative) were included if participants included or were restricted to children under 5 years of age with serious infectious illnesses, included parents and/or first contact health care professionals in primary care, urgent and emergency care and where the research had been conducted in OECD high income countries. The Mixed Methods Appraisal Tool was used to review the methodological quality of the studies. Thirty-six papers were selected for full text review; 12 studies fitted the inclusion criteria. Factors influencing the timing of admission to hospital included the variability in children's illness trajectories and pathways to hospital, parental recognition of symptoms and clinicians non-recognition of illness severity, parental help-seeking behaviour and clinician responses, access to services, use and non-use of 'gut feeling' by clinicians, and sub-optimal management within primary, secondary and tertiary services. The pathways taken by children with a serious infectious illness to hospital are complex and influenced by a variety of potentially modifiable individual, organisational, environmental and contextual factors. Supportive, accessible, respectful services that provide continuity, clear communication, advice and safety-netting are important as is improved training for clinicians and a mandate to attend to 'gut feeling'. Relatively simple interventions such as improved communication have the potential to improve the quality of care and reduce morbidity and mortality in children with a serious infectious illness.