Understanding the importance of therapeutic alliance during physiotherapy treatment for musculoskeletal pain in children: a scoping review.

Introduction: Musculoskeletal pain affecting children is common. Rehabilitation and treatment effectiveness can be influenced by multiple individual and contextual factors. The need for more rigorous evaluation of physiotherapy treatment for children's pain, identification of the role of specific techniques, and exploration of the influence of the therapeutic alliance is needed. This scoping review of research aimed to examine: (1) What are the perceptions of children, parents, and physiotherapists about the importance of therapeutic alliance during musculoskeletal pain treatment? (2) What are the key characteristics of therapeutic alliance during a child's musculoskeletal pain treatment from the perspectives of children, parents, and physiotherapists? and (3) What are the perceived impacts of therapeutic alliance (positive and negative) during a child's physiotherapy treatment for musculoskeletal pain? Methods: The scoping review, based on Arksey and O'Malley's framework and reporting was guided by PRISMA-ScR. The search strategy was based on three concept blocks: (1) Study population: Children (<18 years); (2) Medical condition: Any musculoskeletal pain (acute, chronic primary, chronic secondary); (3) Intervention: Qualitative exploration of experience of physiotherapy treatment delivered by a physiotherapist from the perspective of a child, parent, or physiotherapist. The search (no date limit) was conducted in February 2024 across Medline, AMED and CINAHL. Results: Following duplicate removal and assessment of eligibility of the initial 236 articles, nine articles were included; of these, only one specifically aimed to explore therapeutic alliance and it was the only paper to directly mention therapeutic alliance. All nine articles presented the child's experience. One overarching theme "Finding resilience within me through therapeutic alliance" and three main themes: "A trusted guide through the ups and the downs of rehabilitation"; "Having a route map"; and "Take me seriously but make it fun" were identified. Discussion: Therapeutic alliance was considered important by children, parents and physiotherapist and it influenced child and parent perceptions of physiotherapy and overall treatment outcomes. Physiotherapists can foster the children's resilience when experiencing musculoskeletal pain by providing disciplinary expertise, connecting and collaborating with the child by becoming their trusted guide, and co-creating a route map for rehabilitation by helping them to learn about their body, pain and recovery timeline.

Narrative Accounts of Youth and Their Mothers With Chronic Headache: Application of a Socio-narratology Framework to Pain Narratives.

OBJECTIVES: This study was the first to apply a socio-narratology framework to the narratives about child pain as told by youth with chronic pain and their parents, all of whom experience chronic headaches. BACKGROUND: Storytelling is a powerful social transaction that occurs within systems (eg, families, clinical encounters) and is both shaped by, and can shape, the pain experience. Narrative can be harnessed as a clinical tool to aid in the ability to listen, understand, and improve clinical encounters. METHODS: Twenty-six youth (aged 11 to 18 y) and their mothers, both with chronic headaches, recruited from a tertiary level pediatric pain clinic separately completed in-depth interviews about children's pain journey narratives. Data were analyzed using narrative analysis, which incorporated elements of socio-narratology to compare similarities and differences between and within dyads' narratives. RESULTS: Five narrative types were generated: (1) The trauma origin story-parents, but not youth, positing traumatic events as the causal link to children's pain; (2) mistreated by the medical system-neglect, harm, and broken promises resulting in learned hopelessness or relying on the family system; (3) the invalidated-invalidation of pain permeated youth's lives, with mothers as empathic buffers; (4) washed away by the pain-challenges perceived as insurmountable and letting the pain take over; and (5) taking power back from pain-youth's ability to live life and accomplish goals despite the pain. CONCLUSION: Findings support the clinical utility of narrative in pediatric pain, including both parents' and youths' narrative accounts to improve clinical encounters and cocreate more youth-centred, empowering narratives.

A rapid systematic review of breakthrough pain definitions and descriptions.

Background: Breakthrough pain is common in life-limiting conditions and at end-of-life. Despite over 30 years of study, there is little consensus regarding the definition and characteristics of breakthrough pain. Objective: This study aims to update and expand a 2010 systematic review by Haugen and colleagues to identify (1) all definitions of breakthrough pain and (2) all descriptions and classifications of breakthrough pain reported by patients, caregivers, clinicians, and experts. Design: This rapid systematic review followed the Cochrane Rapid Review Methods Group guidelines. A protocol is published on PROSPERO (CRD42019155583). Data sources: CINAHL, MEDLINE, PsycINFO, and the Web of Science were searched for breakthrough pain terms from the inception dates of each database to 26th August 2022. Results: We identified 65 studies that included data on breakthrough pain definitions, descriptions, or classifications from patients (n = 30), clinicians (n = 6), and experts (n = 29), but none with data from caregivers. Most experts proposed that breakthrough pain was a sudden, severe, brief pain occurring in patients with adequately controlled mild-moderate background pain. However, definitions varied and there was no consensus. Pain characteristics were broadly similar across studies though temporal factors varied widely. Experts classified breakthrough pain into nociceptive, neuropathic, visceral, somatic, or mixed types. Patients with breakthrough pain commonly experienced depression, anxiety, and interference with daily life. Conclusions: Despite ongoing efforts, there is still no consensus on the definition of breakthrough pain. A compromise is needed on breakthrough pain nomenclature to collect reliable incidence and prevalence data and to inform further refinement of the construct.

Definition and Assessment of Paediatric Breakthrough Pain: A Qualitative Interview Study.

Infants, children and young people with life-limiting or life-threatening conditions often experience acute, transient pain episodes known as breakthrough pain. There is currently no established way to assess breakthrough pain in paediatric palliative care. Anecdotal evidence suggests that it is frequently underdiagnosed and undertreated, resulting in reduced quality of life. The development of a standardised paediatric breakthrough pain assessment, based on healthcare professionals' insights, could improve patient outcomes. This study aimed to explore how healthcare professionals define and assess breakthrough pain in paediatric palliative care and their attitudes towards a validated paediatric breakthrough pain assessment. This was a descriptive qualitative interview study. Semi-structured interviews were conducted with 29 healthcare professionals working in paediatric palliative care across the UK. An inductive thematic analysis was conducted on the data. Five themes were generated: 'the elusive nature of breakthrough pain', 'breakthrough pain assessment', 'positive attitudes towards', 'reservations towards' and 'features to include in' a paediatric breakthrough pain assessment. The definition and assessment of breakthrough pain is inconsistent in paediatric palliative care. There is a clear need for a validated assessment questionnaire to improve assessment, diagnosis and management of breakthrough pain followed by increased healthcare professional education on the concept.

The Concept of Child-Centred Care in Healthcare: A Scoping Review.

Although child-centred care is increasingly referred to within the nursing literature, a clear definition of child-centred care and clarity around the concept is yet to be achieved. The objectives of this review were to examine the following: (1) What constitutes the concept of child-centred care in healthcare? (2) How has the concept of child-centred care developed? (3) What is the applicability of child-centred care and what are its limitations? (4) How does the concept of child-centred care benefit and inform children's healthcare? In total, 2984 papers were imported for screening, and, following the removal of duplicates and screening, 21 papers were included in the scoping review. The findings suggest that child-centred care is an emerging, ambiguous poorly defined concept; no clear consensus exists about what constitutes child-centred care. Although it seems antithetical to argue against child-centred care, little robust evidence was identified that demonstrates the impact and benefit of child-centred care. If child-centred care is to be a sustainable, convincing model to guide practice and compete with other models of care, it needs to establish robust evidence of its effectiveness, the impact on children and their families, as well as the wider impacts on the healthcare system.

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.

The novel Next Step test is a reliable measure of anticipatory postural adjustments made by children with cerebral palsy prior to taking a step.

BACKGROUND: Children with cerebral palsy (CP) make smaller medio-lateral anticipatory postural adjustments (APAs) than typically developing peers when stepping forward to a medial target. They are also less accurate at reaching the stepping target. The Next Step test involves the biomechanical measurement of APAs and foot placement error. These may be useful outcome measures to evaluate dynamic balance in a clinical trial. The reliability of the measures must be assessed to establish their reliability as research tools. RESEARCH QUESTION: What is the inter-rater and intra-rater reliability of stepping accuracy and measures of APAs made by children prior to taking a step? METHODS: Typically developing (TD) (n = 14) or children with CP (n = 16) were recruited from local clinics. Children stepped to electro-luminescent targets placed medially and laterally to each foot. Stepping responses were measured using a force plate and 3D motion analysis of markers placed on the feet and pelvis. The APA was defined as the movement of the centre of pressure (COP) and the centre of mass (COM) estimated via pelvic markers, prior to lifting the lead leg. Stepping accuracy was defined as the absolute distance between the target and end foot position. Participants undertook two data collection sessions separated by at least one week. In session one, the test was measured by rater 1 who repeated this in session two, along with another data collection by a rater 2 or rater 3, after a rest period. Where data were normally distributed, they were assessed for inter-rater and intra-rater reliability using an intra-class correlation coefficient (ICC) and Bland-Altman plots. The standard error of measurement was calculated to determine the minimum difference needed to detect true change. RESULTS: There was no between-group differences in group characteristics (age, weight, height) or in stepping velocity. We found good to excellent reliability when measuring the amplitude and velocity of medio-lateral APAs (ICC range 0.73-0.89). The reliability of antero-posterior APAs was more variable (ICC range 0.08-0.92). The minimum difference to detect a true change for peak medio-lateral motion of COP ranges from 23.7 mm to 29.6 mm and for peak velocity of medio-lateral COM estimate 41-61.9 mm. Stepping accuracy was not normally distributed. SIGNIFICANCE: The Next Step test is a reliable measure of dynamic balance. The peak medio-lateral motion of the COP and medio-lateral velocity of the COM estimate are reliable when measured during a constrained stepping task in ambulant children with cerebral palsy.

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.

A shared love: reciprocity and hopefulness in romantic relationships of young adults with chronic pain.

Introduction: Chronic pain (≥3 months) creates pain-related challenges that may negatively affect how young adults perceive themselves, and, indeed, they often report feeling different compared to peers and prospective romantic partners. Most studies of romantic relationships in young adults living with a long-term condition (including pain), do not consider the perspective of their partner. We present the findings of a qualitative, exploratory interview study (Phase 2 of a mixed methods study). This qualitative phase aimed to explore how young adults with chronic pain and their partners navigate romantic relationships. We focused on how young adults perceive and experience their romantic relationships and the impact, challenges, and benefits associated with living with chronic pain. Methods: This study used remote (videoconferencing) photo-elicitation interviews with a convenience sample of young adults with chronic pain (aged 18-25 years, UK and Canada) and their partners. Recruitment occurred via social media, pain-related websites and organizations, and professional networks. Five young adults with chronic pain from the UK and Canada formed the e-Advisory Group and provided detailed advice throughout the study. Data analysis used the principles of inductive reflexive thematic analysis to explore the dimensions and meaning of romantic relationships from the views of young adults with chronic pain and their romantic partners. Findings: Sixteen young adults participated (seven couples plus two young adults with pain who were interviewed without their partner). The young adults with chronic pain were ages 18-24 years (mean 21.88 years, SD 2.23). Four major interpretive themes were generated: Kindred spirits-we just sort of work; Loving in everyday acts-it's not above and beyond, it's concerned supportiveness; It's OK to be vulnerable with each other-we can talk it through; and You can't see over the horizon-hopes and fears for the future. Discussion: Hopefulness and reciprocity were key to the stories shared by the young adults in the current study. Despite the challenges and limitations imposed by chronic pain, their relationships were characterized by partnership and reciprocity, and they were able to be vulnerable with each other and offer each other support.

Feeling stretched: Parents' narratives about challenges to resilience when their child has a tracheostomy.

This study aimed to examine how parents develop personal resilience when facing the challenges of caring for a child with tracheostomy. This study employed a longitudinal qualitative design. Unstructured narrative interviews with 12 parents (from nine families) whose child had a new tracheostomy were undertaken at three time points over 12 months. Data were analysed using a socio-narratology method. Findings reveal the journey parents experienced, how their feelings changed and the processes involved in developing resilience over the first 12 months of their child having a tracheostomy. Stories told by parents early in their journey revealed emotional upheaval, negative emotions, stress and shock. Due to medical need, parents had little or no choice for their child to have a tracheostomy. Once their child's life was out of danger, parents started to reframe their experiences and beliefs. Resilience played a major part in how parents perceived and faced their situation, allowing them to deal with what came their way and to move forward with their lives. Different aspects of resilience such as self-awareness, grit, gratitude, internal locus of control and reframing came to the fore at different time points. Parents talked feeling stretched by the challenges they faced and how they reframed their perspectives about their child's tracheostomy. Parents' resilience and reframing is discussed in relation to the ABC-X model. This study identifies a theoretical model that explains this process of change, this results in transferable knowledge, useful for understanding and explaining the experience of other parents and families.

Communication during children's X-ray procedures and children's experiences of the procedure: A scoping review.

INTRODUCTION: Communication is a central part of radiological procedures and influences children's experiences. Previous research concentrates on communication and experiences during complex radiological procedures such as magnetic resonance imaging (MRI). Less is known about the communication that occurs with children undergoing procedures, such as non-urgent X-ray procedures, or the impact communication has on a child's experience. OBJECTIVES: This scoping review examined evidence relating to the communication which occurs between children, parents and radiographers during children's X-ray procedures and how children experience undergoing X-ray procedures. KEY FINDINGS: The comprehensive search identified eight papers. Evidence shows that radiographers dominate communication during X-ray procedures, with their communication in many cases being instructional, closed and limiting the opportunities for children to be involved. Evidence indicates that radiographers have a role in facilitating children in actively engaging in communication during their procedure. The papers that sought children's first-hand experiences highlight children's mainly positive experiences of having an X-ray, and the importance of informing children about their X-ray before and during the procedure. CONCLUSIONS: The scarcity of literature highlights a need for research exploring communication during children's radiological procedures and children's first-hand experiences of undergoing these procedures. Findings highlight a need for an approach that recognises the importance of dyadic (radiographer and child), and triadic (radiographer, parent and child) communication opportunities during an X-ray procedure. IMPLICATIONS FOR PRACTICE: This review highlights a need for an inclusive and participatory approach to communication that recognises children's voice and agency in X-ray procedures.

Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) Sleep-E: a protocol for a randomised controlled trial comparing an online behavioural sleep intervention with standard care in children with Rolandic epilepsy.

INTRODUCTION: Sleep 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 ANALYSES: CASTLE 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 DISSEMINATION: The 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 NUMBER: ISRCTN13202325.

'ZOOMing' in on Consulting with Children and Parents Remotely to Co-Create Health Information Resources.

The COVID-19 pandemic altered the way many people worked. Remote and creative ways were favoured and utilised for consultation activities. In this paper, we draw attention to how we have used creative methods over the teleconferencing platform 'ZOOM' to consult with children and their parents when we were unable to consult with them face-to-face. We document a clear timeline of how we have worked together to co-create an animation and information sheet about receiving outpatient parenteral antimicrobial therapy (OPAT). We identify the opportunities and challenges we faced.

The impact of parent treatment preference and other factors on recruitment: lessons learned from a paediatric epilepsy randomised controlled trial.

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.

A cross sectional study investigating dynamic balance when stepping to targets in children with cerebral palsy compared to typically developing children.

BACKGROUND: Children with Cerebral Palsy (CP) have altered anticipatory postural adjustments (APAs) during gait initiation. These APAs may affect dynamic balance in tasks such as stepping. RESEARCH QUESTIONS: How are APAs in children with CP affected during stepping to precise targets? How do children with CP modulate APAs when stepping to medial and lateral targets? What is the association between APAs and symptom severity, movement quality and impairment profile? METHOD: Children undertook a stepping task to laterally and medially placed targets with either leg, in a randomised order. Movement of the centre of pressure (COP) and markers at the pelvis and foot were measured via a force plate and 3D motion analysis. Motion of the centre of mass (COM) was estimated via pelvic markers. APAs were assessed prior to leading leg lift-off in medio-lateral and antero-posterior directions. Stepping error was calculated. Baseline characteristics of children with CP included Gross Motor Function Measure (GMFM), Quality Function Measure (QFM), leg muscle hypertonia (Tardieu test) and strength (manual dynamometry). RESULTS: Sixteen ambulant children with CP (12.2 years ± 2.2) and 14 typically developing (TD) children (11.6 years ± 2.9) were assessed. In children with CP, APAs in the medio-lateral direction were 20-30% smaller. Children with CP were less able to modulate their APAs with steps to medial and laterally placed targets, than TD children. Medio-lateral COP motion was associated with movement quality assessed by QFM subsections, GMFM (correlation coefficient r = 0.66-0.80) and hip abductor strength (r = 0.75). Antero-posterior APAs were significantly smaller when stepping with the non-paretic leg in children with CP. APA size was positively related to the length of the contralateral, paretic gastrocnemius (r = 0.77). Stepping error was higher in children with CP and inversely correlated to the size of the medio-lateral APA. DISCUSSION: Children with CP show smaller medio-lateral APAs especially when stepping to medially placed targets. APA size may be limited by proximal muscle strength and gastrocnemius length.