Bernie Carter

Edge Hill University · Faculty of Health and Social Care

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 standardise usual physiotherapy care in the UK. A consensus process can be used to define usual physiotherapy care for children with cerebral palsy (CP). The resulting usual care check...

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...

Inflammatory Bowel Disease (IBD) describes a group of conditions that includes Crohn’s disease and ulcerative colitis. Unlike some chronic conditions, to a greater or lesser extent, IBD is hidden from or invisible to others which enables concealment of the condition, especially when stigma is associated with the condition. Concealment or nondisclos...

Bernie Carter ist Professorin für Kinderkrankenpflege in Großbritannien. Ihre Forschung ist auf Kinder und junge Menschen fokussiert, deren Leben eingeschränkt wird durch Schmerz, Krankheit oder Behinderung. Im Folgenden setzt sich die Wissenschaftlerin kritisch mit den Modellen der familienzentrierten Pflege und der kindzentrierten Pflege auseinan...

This paper reports on the analysis of parent-recorded video diaries from a parent-driven campaign, #notanurse_but, supported by the charity WellChild. The campaign reveals the challenges that parents (predominantly mothers) face providing high level, ongoing clinical care for a son or daughter who has complex health care needs. A team of four resea...

Children’s hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliative and hospice care may contribute to the lack of uptake of hospice services by families. T...

Working in a participatory research project with young people who are disabled, care-experienced or otherwise disadvantaged, collaborative fiction writing was a core method of hearing and amplifying their voices. We discuss how meanings were made in this iterative process of capturing resonances in the different stages of the research, resulting in...

Objective: To determine current international practice regarding physiotherapy input for children with ataxia following surgery for posterior fossa tumour. Design: An e-survey covering the following domains: participant demographics, treatment/ intervention, virtual training, intensity/timing of treatment, and aims and outcomes of physiotherapy ma...

Using data from participatory storytelling research with 65 young people, this article provides a co-created theoretical grounding for radical social work with children and young people. The problems and solutions social work should be seeking are explored in the light of resilience theories and the capability approach. The young people’s perspecti...

Children attending hospital for a clinical procedure such as a scan or blood test can experience anxiety and uncertainty. Children who are informed and supported before and during procedures tend to have a more positive experience. Despite this, there is a lack of empirical evidence directly from children around how they would like to be supported...

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 co...

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 se...

Objective To better understand the factors that facilitate and hinder a positive experience of paediatric outpatient parenteral antimicrobial therapy (OPAT). Design Qualitative study using semistructured interviews. Setting A dedicated paediatric consultant-led hospital-based, outreach OPAT service in England. Participants Participants were prim...

Objectives: This study explored the influence of a parent-to-parent peer support scheme on the wellbeing of parents of disabled children or children with additional need who joined a befriending scheme. Methods: A longitudinal concurrent mixed methods (qualitative and quantitative) research design collected data (telephone interviews, Footsteps To...

Little literature examines the cognitive journey taken by parents considering/receiving hospice care for their child. A constructivist grounded theory study explored 38 parents' views of considering/using a children's hospice. Data analysed from focus groups and interviews identified three main concepts. The focus of this paper is identified as Com...

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...

In recent years, there has been a proliferation of sophisticated, user-friendly and accessible instruments of video data collection (e.g. mobile/cell phones and tablets) which facilitate video-based research and analysis. This paper reports on the opportunities and challenges of undertaking video analysis by reporting on the qualitative video analy...

Abstract Background There has been little research in the Middle East regarding communication in the care for children with cancer. Findings of studies undertaken in diverse cultural settings show that health-care providers report being poorly prepared to communicate with children with cancer and feel inadequately prepared to support families facin...