My A-T pack: a qualitative study of the utility, acceptability, design, and content of a family-designed and owned information pack relevant to the lives of children and young people living with ataxia telangiectasia.

Background: Ataxia telangiectasia (A-T) is a rare genetic and progressive condition, primarily affecting the neurological, immunological, and pulmonary systems. In the absence of a cure, people living with A-T require co-ordinated multidisciplinary care to manage their complex needs. This often leads to families working with a range of different professionals and feeling burdened by the amount of information and coordination of care that they manage.

Assessing the performance of paediatric early warning scores to predict critical deterioration events in hospitalised children (the DETECT study): a retrospective matched case-control study.

Background: Paediatric Early Warning Scores (PEWS) enhance patient safety, by focused monitoring of vital signs to identify children at risk of deteriorating. However, there is an acknowledged need for standardisation. The aim of this study was to compare the performance of seven PEWS (Alder Hey, Bedside, Bristol, Irish, Newcastle, Scottish and the proposed National PEWS for England (v3)) utilised in clinical practice in the United Kingdom and Ireland.

Romancing With Pain: A Survey Study of Young Adults With Chronic Pain.

Background: Developing and maintaining romantic relationships is a hallmark of entry to adulthood. Studies suggest that young people with chronic pain often experience social challenges engaging in romantic intimacy, but these studies are limited as they (1) combined participants who were and were not in romantic relationships and (2) focused solely on heterosexual romantic relationships. It is unknown how young adults with chronic pain, inclusive of diverse genders and sexual orientations, perceive themselves on romantic relationship factors.

Virtually the same, but remotely different: health professionals, parents and children's experiences of remote out-patient consultations.

Objective: To explore experiences, benefits and concerns associated with remote (telephone/video) consultations from the perspectives of children and young people with juvenile idiopathic arthritis (JIA), their parents and health professionals who were members of a multidisciplinary team in a paediatric rheumatology setting.

Methods: Qualitative design (Interpretive Description) utilizing observation of remote (telephone/video) consultations and remote follow-up interviews with children and young people (7-18 years) with JIA, their parents and health professionals. The setting was a tertiary paediatric rheumatology clinic in a hospital in Northwest England.

Are challenging walking environments linked to falls or risk of falling in children with cerebral palsy? A systematic review.

Background: Children with cerebral palsy (CP) regularly fall over and this has negative effects on their physical and psychosocial wellbeing (e.g., reduced activity participation).

Neighbourhood socioeconomic conditions and emergency admissions for ambulatory care sensitive conditions in children: a longitudinal ecological analysis in England, 2012-2017.

Background: Ambulatory care sensitive conditions (ACSCs) are those for which hospital admission could be prevented by interventions in primary care. Children living in socioeconomic disadvantage have higher rates of emergency admissions for ACSCs than their more affluent counterparts. Emergency admissions for ACSCs have been increasing, but few studies have assessed how changing socioeconomic conditions (SECs) have impacted this.

Coming in hot: a qualitative investigation into perceptions of parents and doctors of reasons for the presentation of children with fever to the emergency department in England.

Introduction: Paediatric emergency department (ED) attendances and admissions in England are increasing. Fever is a common presenting problem for these attendances. Anxiety and misperceptions surrounding appropriate management of fever persist among parents.

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.

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.

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.

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 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.

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.

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.

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.

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.

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.

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.

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).

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.

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.

'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.

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.

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.