Bernie Carter

• PhD
• Professor at Edge Hill University

Objectives Sleep problems are common in children with epilepsy. We aimed to evaluate the clinical effectiveness and incremental cost effectiveness of an online resource for parents of children with epilepsy (CASTLE Online Sleep Intervention, or COSI) combined with standard care (SC) versus SC alone over six months. Design We conducted a multicentre...

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 (HPs) who were members of a multidisciplinary team in a paediatric rheumatology setting. Methods Qualitat...

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 stud...

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. Little evidence exists on the pathways to ED for fever, and doctors’ perceptions of why pare...

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 t...

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,...

Objectives Sepsis is a leading cause of deterioration leading to unplanned transfer to critical care (UTCC) in hospitalised children, but there are few published studies evaluating the predictive performance of severity scores outside critical care. We aimed to compare the predictive performance of eight different severity scores in predicting UTCC...

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...

Despite great theoretical and practical strides within the field of participatory research there is inevitably ‘more to do’, particularly in ensuring authentic engagement and guarding against exclusion of children and young people based on their characteristics or circumstances. Participatory research generates the potential for children and young...

Children and young people are “experts in their own lives,” and we, as researchers, need to find ways to work with them to help co-discover their unique insights. Methods need to be tailored to individual strengths, particular situations, contexts, cultures, and diversity. Participatory research is positioned within a strength-based perspective tha...

We are living in increasingly digital times, excelled at pace by the COVID-19 pandemic, and as such children are more frequently engaging with the digital sphere. In this chapter, we draw attention to how participatory methods were used to consult with children, and their parents and discuss how we have worked together to co-create two different an...

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-cent...

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 break...

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, a...

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: 1) What constitutes the concept of child-centred care in healthcare? 2) How has the concept of child-centred care develop...

Introduction Parents of babies who required neonatal care are responsible for managing their medicines after they are discharged home. There is wide variation in the information and amount of preparation given to parents prior to assuming this challenging task. The aim of the Parent co-Designed Drug Information for parents and Guardians Taking Neon...

Introduction Children and young people (CYP) with epilepsy consult clinicians for management of their seizures but may require advice and support with a range of broader topics, including sleep. However, understanding of clinicians’ perspectives of providing this support is limited. This study aimed to identify, from clinicians, the extent to which...

Introduction In recent years, there has been an increasing use of otoendoscopy in middle ear surgery. There is also increasing evidence of its usefulness as a diagnostic tool for clinicians. However, there is limited evidence on whether understanding their ear condition is of benefit to patients. This novel study sought to explore the perceptions,...

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, reflecti...

Background Paediatric Emergency Department (ED) attendances have been increasing dramatically in the UK with stark inequalities. Febrile illness accounts for around 10%-20% of these attendances. Reasons for this may relate to parental attitudes and knowledge around the management of fever. However, little research has been done to further explore p...

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...

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 esta...

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 ma...

Objectives Breakthrough pain (BTP) is common in children and adults with life-limiting conditions and at end-of-life.1–4 Despite over 30 years of study, there is still little consensus regarding the definition and characteristics of BTP. A systematic review in 2010⁵ of the assessment and classification of cancer breakthrough pain found broad agreem...

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 n...

Background Little is known about the health literacy of children living with long-term conditions. This study aimed to gain insight into the life of children with a long-term condition in the context of health literacy, specifically their understanding of their health and the barriers and facilitators to sharing information about their condition wi...

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, includ...

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....

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. W...

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...

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...

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 u...

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 media...

Many people experience estrangement from a family member, which is broadly understood to refer to negative relationships that are characterised by little or no contact. However, little is known about how people cope with family estrangement. To address this gap, interviews were conducted with 46 participants who identified as being estranged from a...

Bovine colostrum (BC) has anti-inflammatory, anti-infective, growth and intestinal repair factors that may be beneficial in Crohn’s disease (CD). We assessed whether daily BC for up to 3 months was acceptable to children and young people (CYP) with CD in remission or of mild/moderate severity. CYP were randomised to receive either BC or matching pl...

Objectives: The COVID-19 pandemic impacted the lives of pharmacists, resulting in new ways of working. Little literature focuses on the experiences and well-being of hospital pharmacists, particularly on paediatric pharmacists. The setting - a paediatric stand-alone tertiary hospital - opened to adult ICU COVID-19 patients for two time periods. Pa...

Background Paediatric early warning systems (PEWS) are a means of tracking physiological state and alerting healthcare professionals about signs of deterioration, triggering a clinical review and/or escalation of care of children. A proactive end-to-end deterioration solution (the DETECT surveillance system) with an embedded e-PEWS that included se...

Background Childhood epilepsy is a serious and common neurological condition and can have life-long consequences and its impact can pervade all aspects of family life. Whilst the medical management of seizures is important, much of the day-to-day home management of epilepsy is invisible to people external to the family, including health care profes...

Background Failure to recognize and respond to clinical deterioration in a timely and effective manner is an urgent safety concern, driving the need for early identification systems to be embedded in the care of children in hospital. Pediatric early warning systems (PEWS) or PEW scores alert health professionals (HPs) to signs of deterioration, tri...

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 e...

Aims The Dynamic Electronic Tracking and Escalation to reduce critical care transfers (DETECT) study implemented a proactive end-to-end deterioration solution (the DETECT surveillance system) across a tertiary children’s hospital. The DETECT surveillance system, included an electronic paediatric early warning system (DETECT e-PEWS), aimed to reduce...

Aims We aim to showcase how we engaged with children and their parents via a teleconferencing platform (Zoom) using the power of illustration to trigger their recall of going home on outpatient parenteral antimicrobial therapy (OPAT). This co-creative consultation work was conducted to address the need, identified by children and parents in a previ...

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 wa...

Technology‐dependent children are a sub‐population of seriously ill children with life‐limiting conditions who are being cared for at home by their families. Although home‐based care has been the model of care for these children since the late 1980s, there is a paucity of literature about parents' experiences of having home adaptations made to enab...

Introduction Sleep and epilepsy have an established bi-directional 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 delivered via face-to-face educational sessions with parents, which are costly and non-sc...

Introduction Children with cerebral palsy (CP) frequently undertake physiotherapy programmes to improve walking and balance. They often require adult support to exercise in a functional position. A novel interactive exercise trainer has been devised to enable children to exercise with against resistance in a functional position, but its efficacy ha...

This study focussed on identifying the key concerns and information needs of young people with Adolescent Idiopathic Scoliosis (AIS) and their parents and examined what resources might help improve young people’s ‘participativeness’ and health literacy during clinic consultations. A qualitative participatory design underpinned the study. Workshops...

The study aimed to identify how medical technology impacts upon the home and life at home. Inductive auto-driven photo-elicitation or semi-structured interviews were conducted with technology-dependent children/young people (n = 2) and their family members (n = 15) from 10 families. Thematic analysis generated three themes: Altered physicality and...

This article is about the impact of medical technology upon the home and life at home for families with a medically complex, technology dependent child. Using photo-elicitation and semi-structured interview methods, we identified that the detrimental impacts of living with medical technology upon the home and life at home for families were worth it...

Abstract This paper draws together about 20 years of research work and discovery and the development of a resource about pain assessment and management in children with profound cognitive impairment. The animation tells the story of an imagined child called Lily and the skills her mother uses and the challenges that her mother faces in assessing an...

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 ca...

Title: Seeing lockdown through the eyes of children from around the world: Reflecting on a children’s artwork project Mandie Jane Foster (1,2,14) PhD, RN, Senior Lecturer & Research Scholar, Nursing Mohammad Al-Motlaq (3) PhD RN. Associate Professor Maternal Child &Family Health Bernie Carter (4,5,1) PhD, RGN, RSCN, Professor of Children’s Nursing...

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...

Background Inadequate pain management in community paediatric palliative care is common. Evidence to inform improved pain management in this population is limited. Objectives To explore the barriers and facilitators to paediatric community-based pain management for infants, children and young people at end-of-life as perceived by healthcare profes...

This study aimed to understand the role that parents play in sharing or limiting their child’s access to information about coronavirus disease 2019 (COVID-19). A subset of data from an international mixed methods online survey study was analysed to elucidate the findings from Brazil. An online survey, conducted between April and June 2020, gathered...

Purpose To report the course of ataxia in children up to 2 years post-operatively, following surgical resection of a posterior fossa tumour (PFT). Methods Thirty-five children, (median age 9 years, range 4–15) having resection of PFT, were assessed using the Scale for the Assessment and Rating of Ataxia (SARA), Brief Ataxia Rating Scale (BARS) and...

Effective communication with children about pain is important and has the potential to mediate the short‐ and longer‐term effects of pain on children. Most communication studies relating to children's pain have focused on language children use to describe everyday pain experiences. However, little is known regarding how health professionals, partic...

In more recent years in geographical research there has been a trend towards ‘child-friendly’ or ‘young people-friendly’ research methods, often involving creativity and participation. Meanwhile, traditional methods such as interviews and focus groups continue to dominate research with adult participants. This paper draws and reflects on fieldnotes...

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 environmenta...

Contexts : Inadequate pain management in community paediatric palliative care is common. Evidence to inform improved pain management in this population is limited. Objectives : To explore the barriers and facilitators to paediatric community-based pain management for infants, children and young people at end-of-life as perceived by healthcare prof...

Background There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used...

Objectives To gain insight into children’s health-related knowledge and understanding of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV2) and COVID-19, and measures adopted to mitigate transmission. Design A child-centred qualitative creative element embedded in an online mixed-methods survey of children aged 7–12 years. Setting Childr...

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. S...

The COVID-19 pandemic created new challenges for children including access to education and limiting social and emotional connections to extended family, friends, and the community. Globally, opportunities for sharing children’s self-reported experiences during lockdown were limited. The primary aim of this project was to create an art-eBook that...

Background Little evidence exists about parental satisfaction and their influence on referral to paediatric Outpatient Parenteral Antimicrobial Therapy (OPAT). Aim This study aimed to examine the experiences of parents, children and clinicians of OPAT at a large tertiary children’s hospital. Method A prospective e-survey, using closed and open qu...

The aim of this study was to examine aspects of children’s health literacy; the information sources they were accessing, their information preferences, their perceived understanding of and their reported information needs in relation to COVID-19. An online survey for children aged 7–12 years of age and parent/caregivers from the UK, Sweden, Brazil,...

The aim of the present paper was to identify, appraise, and synthesize the available evidence on two‐stage revision hip arthroplasty with or without the use of an interim spacer for managing late prosthetic infection. The review methodology was designed by referencing the Preferred Reporting Items for Systematic Reviews and Meta‐analyses (PRISMA) c...

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 th...

BACKGROUND Emergency and urgent care healthcare services are overburdened and the use of these services by acutely ill infants and children is increasing. A large proportion of these visits could be sufficiently addressed by other healthcare professionals. Uncertainty about the severity of a child’s symptoms is one of many factors that play a role...

Background Urgent and emergency care health services are overburdened, and the use of these services by acutely ill infants and children is increasing. A large proportion of these visits could be sufficiently addressed by other health care professionals. Uncertainty about the severity of a child’s symptoms is one of many factors that play a role in...

Reassurance in the context of pediatric pain is regarded to promote distress. Typically, spoken reassurance is reported as short, generic statements (“it's ok,” “don't worry”); little research has considered wider reassuring behaviors and actions undertaken by nurses. Most studies focus on unidirectional, dyadic relationships between reassurance an...

This article brings together research from the fields of chronic pain management and somatic practices to develop a novel framework of principles to support people living with persistent pain. These include movement-based approaches to awareness of the internal body (interoception), the external environment (exteroception) and movement in space (pr...

Typically, dissemination practices for student researchers consist of producing a written dissertation. For academics, dissemination most often involves publishing journal articles, book chapters, and books. However, many of our research participants, and indeed the wider public, may not be able to access, or may not have a desire to access, academ...

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...

Two million children are admitted to hospital every year in the UK and between 59% and 94% will experience pain, with 27-40% of them experiencing moderate to severe pain. Currently, there are a number of well-researched guidelines on children's pain available, yet pain prevalence is high. Despite the guidelines, there is a lack of an overall framew...

The unpredictable nature of inflammatory bowel disease symptoms and stigma can affect young people's ability to form close friendships and affect their social interactions. New research shows the importance of addressing the mental health and wellbeing of young people with Crohn's disease and colitis.

Inflammatory bowel disease (IBD) is an incurable, chronic, gastrointestinal condition that can constrain young people’s social relationships. Few studies have specifically explored friendships of people with IBD. This qualitative, participatory study used interviews, photographs, and friendship maps to explore friendships and friendship networks of...

This study explores the experience of communication regarding the care of children with cancer, from the perspective of family carers, children and health professionals in occupied Palestinian territory. This study employed an ethnographic collective qualitative case study approach, which was applied in one oncology unit in a Palestinian hospital....

Background Infection, particularly in the first 5 years of life, is a major cause of childhood deaths globally, many deaths from infections such as pneumonia and meningococcal disease are avoidable, if treated in time. Some factors that contribute to morbidity and mortality can be modified. These include organisational and environmental factors as...

Physical restraint is regularly used in children and adolescent mental health care, often as a reactive behaviour management strategy. Physical restraint has been associated with physical injury, but psychological consequences are poorly understood. The aim of this systematic review was to examine physical restraint of children and adolescents in i...

Caring for a child with a tracheostomy can be challenging for parents and learning to safely manage their child’s airway can be frightening due to their child’s breathing issues, complex diagnosis and the difficult decisions they have to make. The aim of this longitudinal narrative study was to tell the stories of parents whose child had a new trac...