The Care and Management of Children and Young People with Ataxia Telangiectasia Provided by Nurses and Allied Health Professionals: a Scoping Review.

Ataxia telangiectasia (A-T) is a rare, multisystem progressive condition that typically presents in early childhood. In the absence of cure, people with A-T require coordinated multidisciplinary care to manage their complex array of needs and to minimize the disease burden. Although symptom management has proven benefits for this population, including improved quality of life and reduced complications, there is a need for guidance specific to the nursing and allied healthcare teams who provide care within the community. A scoping review, adopting the Joanna Briggs Institute methodology, was undertaken. It aimed to identify and map the available expertise from nursing and allied healthcare and management of children and young people with A-T ≤ 18 years of age. A rigorous search strategy was employed which generated a total of 21,118 sources of evidence, of which 50 were selected for review following screening by experts. A range of interventions were identified that reported a positive impact on A-T-related impairments, together with quality of life, indicating that outcomes can be improved for this population. Most notable interventions specific to A-T include therapeutic exercise, inspiratory muscle training, and early nutritional assessment and intervention. Further research will be required to determine the full potential of the identified interventions, including translatability to the A-T setting for evidence related to other forms of ataxia. Large gaps exist in the nursing and allied health evidence-base, highlighting a need for robust research that includes children and young people with A-T and their families to better inform and optimize management strategies.

Parental sleep-related practices and sleep in children aged 1-3 years: a systematic review.

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.

A cross-sectional survey of healthcare professionals supporting children and young people with epilepsy and their parents/carers: which topics are raised in clinical consultations and can healthcare professionals provide the support needed?

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 were 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. 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.

Developing rights-based standards for children having tests, treatments, examinations and interventions: using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus.

Children continue to experience harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. The international ISupport collaboration aimed to develop standards to outline and explain good procedural practice and the rights of children within the context of a clinical procedure. The rights-based standards for children undergoing tests, treatments, investigations, examinations and interventions were developed using an iterative, multi-phased, multi-method and multi-stakeholder consensus building approach. This consensus approach used a range of online and face to face methods across three phases to ensure ongoing engagement with multiple stakeholders. The views and perspectives of 203 children and young people, 78 parents and 418 multi-disciplinary professionals gathered over a two year period (2020-2022) informed the development of international rights-based standards for the care of children having tests, treatments, examinations and interventions. The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.    Conclusion: This is the first study of its kind which outlines international rights-based procedural care standards from multi-stakeholder perspectives. The standards offer health professionals and educators clear evidence-based tools to support discussions and practice changes to challenge prevailing assumptions about holding or restraining children and instead encourage a focus on the interests and rights of the child. What is Known: • Children continue to experience short and long-term harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. • Professionals report uncertainty and tensions in applying evidence-based practice to children's procedural care. What is New: • This is the first study of its kind which has developed international rights-based procedural care standards from multi-stakeholder perspectives. • The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.

The economic burden experienced by carers of children who had a critical deterioration at a tertiary children's hospital in the United Kingdom (the DETECT study): an online survey.

BACKGROUND: Unplanned critical care admissions following in-hospital deterioration in children are expected to impose a significant burden for carers across a number of dimensions. One dimension relates to the financial and economic impact associated with the admission, from both direct out-of-pocket expenditures, as well as indirect costs, reflecting productivity losses. A robust assessment of these costs is key to understand the wider impact of interventions aiming to reduce in-patient deterioration. This work aims to determine the economic burden imposed on carers caring for hospitalised children that experience critical deterioration events. METHODS: Descriptive study with quantitative approach. Carers responded to an online survey between July 2020 and April 2021. The survey was developed by the research team and piloted before use. The sample comprised 71 carers of children admitted to a critical care unit following in-patient deterioration, at a tertiary children's hospital in the UK. The survey provides a characterisation of the carer's household and estimates of direct non-medical costs grouped in five different expenditure categories. Productivity losses can also be estimated based on the reported information. RESULTS: Most carers reported expenditures associated to the child's admission in the week preceding the survey completion. Two-thirds of working carers had missed at least one workday in the week prior to the survey completion. Moreover, eight in ten carers reported having had to travel from home to the hospital at least once a week. These expenditures, on average, amount to £164 per week, grouped in five categories (38% each to travelling costs and to food and drink costs, with accommodation, childcare, and parking representing 12%, 7% and 5%, respectively). Additionally, weekly productivity losses for working carers are estimated at £195. CONCLUSION: Unplanned critical care admissions for children impose a substantial financial burden for carers. Moreover, productivity losses imply a subsequent cost to society. Even though subsidised hospital parking and on-site accommodation at the hospital contribute to minimising such expenditure, the overall impact for carers remains high. Interventions aiming at reducing emergency critical care admissions, or their length, can be crucial to further contribute to the reduction of this burden. TRIAL REGISTRATION: Current Controlled Trials ISRCTN61279068, date of registration 07/06/2019, retrospectively registered.

Using technology to reduce critical deterioration (the DETECT study): a cost analysis of care costs at a tertiary children's hospital in the United Kingdom.

BACKGROUND: Electronic early warning systems have been used in adults for many years to prevent critical deterioration events (CDEs). However, implementation of similar technologies for monitoring children across the entire hospital poses additional challenges. While the concept of such technologies is promising, their cost-effectiveness is not established for use in children. In this study we investigate the potential for direct cost savings arising from the implementation of the DETECT surveillance system. METHODS: Data were collected at a tertiary children's hospital in the United Kingdom. We rely on the comparison between patients in the baseline period (March 2018 to February 2019) and patients in the post-intervention period (March 2020 to July 2021). These provided a matched cohort of 19,562 hospital admissions for each group. From these admissions, 324 and 286 CDEs were observed in the baseline and post-intervention period, respectively. Hospital reported costs and Health Related Group (HRG) National Costs were used to estimate overall expenditure associated with CDEs for both groups of patients. RESULTS: Comparing post-intervention with baseline data we found a reduction in the total number of critical care days, driven by an overall reduction in the number of CDEs, however without statistical significance. Using hospital reported costs adjusted for the Covid-19 impact, we estimate a non-significant reduction of total expenditure from £16.0 million to £14.3 million (corresponding to £1.7 million of savings - 11%). Additionally, using HRG average costs, we estimated a non-significant reduction of total expenditure from £8.2 million to £ 7.2 million (corresponding to £1.1 million of savings - 13%). DISCUSSION AND CONCLUSION: Unplanned critical care admissions for children not only impose a substantial burden on patients and families but are also costly for hospitals. Interventions aimed at reducing emergency critical care admissions can be crucial to contribute to the reduction of these episodes' costs. Even though cost reductions were identified in our sample, our results do not support the hypothesis that reducing CDEs using technology leads to a significant reduction on hospital costs. TRIAL REGISTRATION: Current Controlled Trials ISRCTN61279068, date of registration 07/06/2019, retrospectively registered.

How children in Sweden accessed and perceived information during the first phase of the Covid-19 pandemic.

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.

Health professionals' initial experiences and perceptions of the acceptability of a whole-hospital, pro-active electronic paediatric early warning system (the DETECT study): a qualitative interview study.

BACKGROUND: Paediatric early warning systems (PEWS) alert health professionals to signs of a child's deterioration with the intention of triggering an urgent review and escalating care. They can reduce unplanned critical care transfer, cardiac arrest, and death. Electronic systems may be superior to paper-based systems. The objective of the study was to critically explore the initial experiences and perceptions of health professionals about the acceptability of DETECT e-PEWS, and what factors influence its acceptability. METHODS: A descriptive qualitative study (part of The DETECT study) was undertaken February 2020-2021. Single, semi-structured telephone interviews were used. The setting was a tertiary children's hospital, UK. The participants were health professionals working in study setting and using DETECT e-PEWS. Sampling was undertaken using a mix of convenience and snowballing techniques. Participants represented two user-groups: 'documenting vital signs' (D-VS) and 'responding to vital signs' (R-VS). Perceptions of clinical utility and acceptability of DETECT e-PEWS were derived from thematic analysis of transcripts. RESULTS: Fourteen HPs (12 nurses, 2 doctors) participated; seven in D-VS and seven in the R-VS group. Three main themes were identified: complying with DETECT e-PEWS, circumventing DETECT e-PEWS, and disregarding DETECT e-PEWS. Overall clinical utility and acceptability were deemed good for HPs in the D-VS group but there was diversity in perception in the R-VS group (nurses found it more acceptable than doctors). Compliance was better in the D-VS group where use of DETECT e-PEWS was mandated and used more consistently. Some health professionals circumvented DETECT e-PEWS and fell back into old habits. Doctors (R-VS) did not consistently engage with DETECT e-PEWS, which reduced the acceptability of the system, even in those who thought the system brought benefits. CONCLUSIONS: Speed and accuracy of real-time data, automation of triggering alerts and improved situational awareness were key factors that contributed to the acceptability of DETECT e-PEWS. Mandating use of both recording and responding aspects of DETECT e-PEWS is needed to ensure full implementation.

Navigating uncertain illness trajectories for young children with serious infectious illness: a modified grounded theory study.

BACKGROUND: Infectious illness is the biggest cause of death in children due to a physical illness, particularly in children under five years. If mortality is to be reduced for this group of children, it is important to understand factors affecting their pathways to hospital. The aim of this study was to retrospectively identify organisational and environmental factors, and individual child, family, and professional factors affecting timing of admission to hospital for children under five years of age with a serious infectious illness (SII). METHODS: An explanatory modified grounded theory design was used in collaboration with parents. Two stages of data collection were conducted: Stage 1, interviews with 22 parents whose child had recently been hospitalised with a SII and 14 health professionals (HPs) involved in their pre-admission trajectories; Stage 2, focus groups with 18 parents and 16 HPs with past experience of SII in young children. Constant comparative analysis generated the explanatory theory. RESULTS: The core category was 'navigating uncertain illness trajectories for young children with serious infectious illness'. Uncertainty was prevalent throughout the parents' and HPs' stories about their experiences of navigating social rules and overburdened health services for these children. The complexity of and lack of continuity within services, family lives, social expectations and hierarchies provided the context and conditions for children's, often complex, illness trajectories. Parents reported powerlessness and perceived criticism leading to delayed help-seeking. Importantly, parents and professionals missed symptoms of serious illness. Risk averse services were found to refer more children to emergency departments. CONCLUSIONS: Parents and professionals have difficulties recognising signs of SII in young children and can feel socially constrained from seeking help. The increased burden on services has made it more difficult for professionals to spot the seriously ill child.

Defining usual physiotherapy care in ambulant children with cerebral palsy in the United Kingdom: A mixed methods consensus study.

BACKGROUND: Ambulant children with cerebral palsy (CP) undertake physiotherapy to improve balance and walking. However, there are no relevant clinical guidelines to standardize usual physiotherapy care in the United Kingdom. A consensus process can be used to define usual physiotherapy care for children with CP. The resulting usual care checklist can support the development of clinical guidelines and be used to measure fidelity to usual care in the control groups of trials for children with CP. METHODS: Twelve expert physiotherapists were recruited. In Phase 1, statements on usual care were developed using a survey and two nominal groups. Phase 2 included a literature review to support usual physiotherapy interventions. Phase 3 used a confirmatory survey, which also captured changes to provision during the COVID-19 pandemic. Consensus was calculated by deriving the mean of the deviations from the median score (MDM). High consensus was deemed to be where MDM < 0.42. RESULTS: Physiotherapists reached high consensus on five outcome measures (MDM range 0-0.375) and nine areas of assessment (MDM range 0-0.25). Physiotherapists reached moderate consensus on task-specific training (MDM = 0.75), delivered at weekly intensity for 4-6 weeks (MDM = 0.43). There was high consensus (MDM = 0) that children should participate in modified sport and fitness activities and that children with Gross Motor Function Classification System Level III should be monitored on long-term pathways (MDM = 0.29). CONCLUSIONS: Physiotherapists reached consensus on two usual care interventions, and a checklist was developed to inform the control groups of future randomized controlled trials. Further consensus work is required to establish clinical guidelines to standardize usual physiotherapy care in the United Kingdom.

Romantic Relationships in Young People with Long-Term Health Conditions: A Scoping Review.

OBJECTIVE: Forming and maintaining romantic relationships is an important developmental task in adolescence and young adulthood. This scoping review seeks to explore how young people with long-term physical health conditions understand and experience romantic relationships. METHODS: Using Arksey and O'Malley's scoping review framework, a systematic search of five databases was conducted (PsychINFO, Cinahl, MEDLINE, Embase, and Web of Science). Studies were eligible for inclusion in the review if they were published in peer-reviewed journals, used primary data collection methods, and adopted quantitative, qualitative, or mixed-methods approaches to study romantic relationships in 11-25 year olds with long-term physical health conditions. Using a data extraction form, data pertaining to demographic characteristics of young people with long-term physical health conditions and relationship engagement were extracted from eligible papers. RESULTS: Searches returned 4645 papers after duplicate removal, with a two-stage screening process resulting in 111 full-text papers being reviewed. Thirty-three eligible papers were included across a range of long-term physical health conditions. Findings identified that living with a long-term physical health condition impacted young people's perceptions and experiences of romantic relationships across the relationship lifespan, from envisaging future relationships, to forming relationships, and sustaining relationships. Issues around body confidence and self-esteem were identified as challenging in terms of perceptions and experiences of romantic relationships. CONCLUSIONS: Findings demonstrate that young people wish to engage with romantic relationships, yet many report particular challenges associated with forming and sustaining relationships due to the constraints of their condition and treatment. Future research should consider nonheterosexual relationships.

Depression, anxiety, and loneliness among adolescents and young adults with IBD in the UK: the role of disease severity, age of onset, and embarrassment of the condition.

PURPOSE: Adolescents and young adults (AYA) with Inflammatory Bowel Disease (IBD) report higher depressive symptoms and anxiety compared to healthy controls, with disease severity and abdominal pain being important factors. In the current study, building on what young people had told us in our previous work, we examined whether embarrassment of the condition, social self-efficacy, and friendship quality mediated the relationship between abdominal pain and disease severity, and mental health/well-being. We also included loneliness as a component of well-being. METHODS: Data on depression, anxiety, loneliness, friendship quality, social self-efficacy, and disease embarrassment were collected from 130 AYA with IBD ages 14-25 years; data on disease severity and abdominal pain were taken from their medical records. Structural Equation Modeling (SEM) was used to test the relationships between the variables. RESULTS: Using SEM, we established that higher IBD disease activity negatively impacted how AYA felt about their friendships and how embarrassed they were about their condition; embarrassment then influenced reports of mental health, including loneliness. Abdominal pain, disease onset, and social self-efficacy directly predicted internalising problems. CONCLUSION: In this sample of 14-25-year-old patients with IBD, specifics about the disease (severity and pain) predicted poorer mental health, suggesting discussion of mental health should be part of the clinical dialogue between patient and consultant. In addition, embarrassment about their condition increased depression, anxiety, and loneliness, mediating the relationship between disease severity and well-being. Thus, it is important to consider how perceived stigma affects those with chronic illness, and those issues should be explored in clinic.

Is paediatric endotracheal suctioning by nurses evidence based? An International Survey.

BACKGROUND: Endotracheal suction (ETS) is essential in intubated patients to prevent tube occlusion and is one of the most common nursing interventions performed in intensive care. AIMS AND OBJECTIVES: To explore how paediatric ETS practices reflect evidence-based practice (EBP) recommendations in paediatric intensive care units (PICU) worldwide. STUDY DESIGN AND METHODS: A cross-sectional electronic survey linked to a real patient suction episode. Nurses completed the survey following a recent ETS episode. Evidence-based practice (EBP) was defined based on four of the American Association for Respiratory Care (AARC) best evidence recommendations: pre-oxygenation before suction, use of a suction catheter no more than half the diameter of the tracheal tube, shallow depth of suction, and the continuous suction applied upon withdrawal of the catheter. Participants included PICU nurses who performed ETS in children (0-17 years) excluding preterm neonates. RESULTS: Four hundred forty-six complete surveys were received from 20 countries. Most nurses (80%, 367/446) reported that their units had local guidelines for ETS. The most common reason for suctioning (44%) was audible/visible secretions. Over half of ETS episodes (57%) used closed suction. When exploring the individual components of suction, 63% (282/446) of nurses pre-oxygenated their patient prior to suction, 71% (319/446) suctioned no further than 0.5 cm past end of the endotracheal tube (ETT), 59% (261/446) used a catheter no more than half the diameter of the ETT, and 78% (348/446) used continuous negative pressure. 24% of nurses gave patients an additional bolus of sedative, analgesic, and/or muscle-relaxant medication prior to suction; this decision was not related to the child's history of instability with suction, as there was no significant difference in those who reported patients had a history of being unstable with suction (P = .80). 26% (117/446) of nurses complied with all four EBP components in the reported suctioning episode. CONCLUSIONS: Considerable variation in paediatric endotracheal suctioning practices exists internationally. Although most nurses applied single components of evidence-based recommendations during ETT suctioning, just a quarter applied all four elements. RELEVANCE TO CLINICAL PRACTICE: Nurses need to consider and strive to apply EBP principles to common nursing interventions such as ETS.

Exercise and Physical Therapy Interventions for Children with Ataxia: A Systematic Review.

The effectiveness of exercise and physical therapy for children with ataxia is poorly understood. The aim of this systematic review was to critically evaluate the range, scope and methodological quality of studies investigating the effectiveness of exercise and physical therapy interventions for children with ataxia. The following databases were searched: AMED, CENTRAL, CDSR, CINAHL, ClinicalTrials.gov, EMBASE, Ovid MEDLINE, PEDro and Web of Science. No limits were placed on language, type of study or year of publication. Two reviewers independently determined whether the studies met the inclusion criteria, extracted all relevant outcomes, and conducted methodological quality assessments. A total of 1988 studies were identified, and 124 full texts were screened. Twenty studies were included in the review. A total of 40 children (aged 5-18 years) with ataxia as a primary impairment participated in the included studies. Data were able to be extracted from eleven studies with a total of 21 children (aged 5-18 years), with a range of cerebellar pathology. The studies reported promising results but were of low methodological quality (no RCTs), used small sample sizes and were heterogeneous in terms of interventions, participants and outcomes. No firm conclusions can be made about the effectiveness of exercise and physical therapy for children with ataxia. There is a need for further high-quality child-centred research.

Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus.

OBJECTIVE: Establishing a core set of outcomes to be evaluated and reported in intervention trials aims to improve the usefulness of health research. There is no established core outcome set (COS) for childhood epilepsies. The aim of this study was to select a COS to be used in evaluative research of interventions for children with rolandic epilepsy (RE). METHODS: We followed guidance from the COMET (Core Outcome Measures in Effectiveness Trials) Initiative. First, we identified outcomes that had been measured in research through a systematic review. Second, young people with RE, parents, and professionals were invited to take part in a Delphi survey in which participants rated the importance of candidate outcomes. Last, a face-to-face meeting was convened to seek consensus on which outcomes were critical to include and to ratify the final COS. RESULTS: From 37 eligible papers in the review, we identified and included 48 candidate outcomes in the survey. We sent invitations to 165 people registered to take part in the survey; of these, 102 (62%) completed Round 1, and 80 (78%) completed Round 2 (three young people, 16 parents, 61 professionals). In Round 2 we included four additional outcomes suggested by participants in Round 1. The consensus meeting included two young people, four parents, and nine professionals who were eligible to vote and ratified the COS as 39 outcomes across 10 domains. SIGNIFICANCE: Our methodology was a proportionate and pragmatic approach toward producing a COS for evaluating research on interventions aiming to improve the health of children with RE.

Dynamic Electronic Tracking and Escalation to reduce Critical care Transfers (DETECT): the protocol for a stepped wedge mixed method study to explore the clinical effectiveness, clinical utility and cost-effectiveness of an electronic physiological surveillance system for use in children.

BACKGROUND: Active monitoring of hospitalised adults, using handheld electronic physiological surveillance systems, is associated with reduced in-patient mortality in the UK. Potential also exists to improve the recognition and response to deterioration in hospitalised children. However, the clinical effectiveness, the clinical utility, and the cost-effectiveness of this technology to reduce paediatric critical deterioration, have not been evaluated in an NHS environment. METHOD: This is a non-randomised stepped-wedge prospective mixed methods study. Participants will be in-patients under the age of 18 years, at a tertiary children's hospital. Day-case, neonatal surgery and Paediatric Intensive Care Unit (PICU) patients will be excluded. The intervention is the implementation of Careflow Vitals and Connect (System C) to document vital signs and sepsis screening. The underpinning age-specific Paediatric Early Warning Score (PEWS) risk model calculates PEWS and provides associated clinical decision support. Real-time data of deterioration risk are immediately visible to the entire clinical team to optimise situation awareness, the chronology of the escalation and response are captured with automated reporting of the organisational safety profile. Baseline data will be collected prospectively for 1 year preceding the intervention. Following a 3 month implementation period, 1 year of post-intervention data will be collected. The primary outcome is unplanned transfers to critical care (HDU and/or PICU). The secondary outcomes are critical deterioration events (CDE), the timeliness of critical care transfer, the critical care interventions required, critical care length of stay and outcome. The clinical effectiveness will be measured by prevalence of CDE per 1000 hospital admissions and per 1000 non-PICU bed days. Observation, field notes, e-surveys and focused interviews will be used to establish the clinical utility of the technology to healthcare professionals and the acceptability to in-patient families. The cost-effectiveness will be analysed using Health Related Group costs per day for the critical care and hospital stay for up to 90 days post CDE. DISCUSSION: If the technology is effective at reducing CDE in hospitalised children it could be deployed widely, to reduce morbidity and mortality, and associated costs. TRIAL REGISTRATION: Current Controlled Trials ISRCTN61279068 , date of registration 03.06.19, retrospectively registered.

Child Centred Care: Challenging Assumptions and Repositioning Children and Young People.

THEORETICAL PRINCIPLES: Against a backdrop of increasing debate regarding children's voice and position within health care and the struggle to effectively implement Family-Centred Care (FCC) in practice, the concept of Child-Centred Care (CCC) has emerged. PHENOMENA ADDRESSED: The purpose of this paper is to explore the concept of CCC and its potential theoretical alignment with an ecological approach to health care. RESEARCH LINKAGES: The paper will draw on practice-based research, highlighting the differences and similarities of CC against the more established FCC. Arguments will be presented to show that rather than competing with FCC, CCC has the potential to complement or extend traditional FCC, by placing children in a more prominent and central position than that which they currently hold within health care.

Nursing judgement and decision-making using the Sedation Withdrawal Score (SWS) in children.

AIMS: The aim of the study was to evaluate registered children's nurses' approaches to the assessment and management of withdrawal syndrome in children. BACKGROUND: Assessment of withdrawal syndrome is undertaken following critical illness when the child's condition may be unstable with competing differential diagnoses. Assessment tools aim to standardize and improve recognition of withdrawal syndrome. Making the right decisions in complex clinical situations requires a degree of mental effort and it is not known how nurses make decisions when undertaking withdrawal assessments. DESIGN: Cognitive interviews with clinical vignettes. METHODS: Interviews were undertaken with 12 nurses to explore the cognitive processes they used when assessing children using the Sedation Withdrawal Score (SWS) tool. Interviews took place in Autumn 2013. FINDINGS: Each stage of decision-making-noticing, interpreting and responding-presented cognitive challenges for nurses. When defining withdrawal behaviours nurses tended to blur the boundaries between Sedation Withdrawal Score signs. Challenges in interpreting behaviours arose from not knowing if the patient's behaviour was a result of withdrawal or other co-morbidities. Nurses gave a range of diagnoses when interpreting the vignettes, despite being provided with identical information. Treatment responses corresponded to definite withdrawal diagnoses, but varied when nurses were unsure of the diagnosis. CONCLUSION: Cognitive interviews with vignettes provided insight into nurses' judgement and decision-making. The SWS does not standardize the assessment of withdrawal due to the complexity of the context where assessments take place and the difficulties of determining the cause of equivocal behaviours in children recovering from critical illness.

Accuracy and Efficiency of Recording Pediatric Early Warning Scores Using an Electronic Physiological Surveillance System Compared With Traditional Paper-Based Documentation.

Pediatric Early Warning Scores are advocated to assist health professionals to identify early signs of serious illness or deterioration in hospitalized children. Scores are derived from the weighting applied to recorded vital signs and clinical observations reflecting deviation from a predetermined "norm." Higher aggregate scores trigger an escalation in care aimed at preventing critical deterioration. Process errors made while recording these data, including plotting or calculation errors, have the potential to impede the reliability of the score. To test this hypothesis, we conducted a controlled study of documentation using five clinical vignettes. We measured the accuracy of vital sign recording, score calculation, and time taken to complete documentation using a handheld electronic physiological surveillance system, VitalPAC Pediatric, compared with traditional paper-based charts. We explored the user acceptability of both methods using a Web-based survey. Twenty-three staff participated in the controlled study. The electronic physiological surveillance system improved the accuracy of vital sign recording, 98.5% versus 85.6%, P < .02, Pediatric Early Warning Score calculation, 94.6% versus 55.7%, P < .02, and saved time, 68 versus 98 seconds, compared with paper-based documentation, P < .002. Twenty-nine staff completed the Web-based survey. They perceived that the electronic physiological surveillance system offered safety benefits by reducing human error while providing instant visibility of recorded data to the entire clinical team.

Consulting with children, parents and a teacher to shape a qualitative study.

BACKGROUND: Patient and public involvement is an emerging element of contemporary research and reflects an acknowledgement of the expertise of people who have personal knowledge or experience of a research topic. AIM: To discuss the value of consultation in contributing to the ethical and methodological choices underpinning a qualitative study. DISCUSSION: The study discussed explored the perceptions and experiences of children aged four to 12 with long-term conditions of being held still by adults during clinical procedures in acute care. Consultation took place in three stages and involved engagement with a children's advisory group and members of the public, including parents and a teacher. CONCLUSION: Engagement shaped the focus, influenced the design and underpinned the ethical basis of the study. In addition, consultation identified that the focus of the research was misunderstood by potential participants and their parents. IMPLICATIONS FOR PRACTICE: Engaging in robust consultation is a valuable process which can inform research design in unexpected ways. Engagement with children ensures that their perspectives are identified and included and shape the study.