Lucy Bray

Lucy Bray
Edge Hill University · Faculty of Health and Social Care

BA (Hons) Nursing (child), MSc Nursing studies (child), PhD Nursing

About

125
Publications
21,696
Reads
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1,347
Citations
Citations since 2017
70 Research Items
1035 Citations
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Additional affiliations
January 2009 - present
Alder Hey Children's NHS Foundation Trust
Position
  • Reader in Children, Young People and Families
April 2003 - present
Edge Hill University
Position
  • Reader in Children, Young People and Families

Publications

Publications (125)
Chapter
Whilst there is growing awareness of the case for children and young people's participation in health services and health service research, there is limited evidence on how this apparent commitment to children's right to participate translates into practice. The chapter, co-authored with and young people, draws on examples from the authors' origin...
Article
Full-text available
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...
Article
Full-text available
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...
Article
Full-text available
Children attending hospital for radiological procedures can experience uncertainty, anxiety and distress; this can result in sub-optimal experiences for children, poor scan quality and the need for radiological procedures to be rescheduled or sedation to be used. The preparation and education of children before clinical procedures has been shown to...
Article
Full-text available
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...
Conference Paper
Aims The consensus method approach which ran throughout 2021 involved six decision-making meetings with the international collaborative group and 155 responses to the online survey from children, parents and health professionals from across a range of settings and 18 countries. The rights-based standards: propose a holistic approach to minimise the...
Article
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...
Preprint
Full-text available
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...
Article
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...
Article
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...
Data
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...
Article
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...
Article
Full-text available
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...
Preprint
Full-text available
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...
Article
Full-text available
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...
Article
Full-text available
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...
Article
Full-text available
Children continue to be poorly prepared and informed about clinical procedures, despite increased evidence of the worth of preparation and the availability of information resources. This study used a concurrent mixed-methods approach to explore the information accessed by children and their parents before attending hospital for a procedure. Informa...
Article
Full-text available
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,...
Article
Full-text available
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...
Article
Full-text available
Background The number of young adults with complex health-care needs due to life-limiting conditions/complex physical disability has risen significantly over the last 15 years, as more children now survive into adulthood. The transition from children to adult services may disrupt provision of essential respite/short break care for this vulnerable p...
Preprint
Full-text available
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...
Article
Full-text available
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...
Article
Full-text available
Objective: The objectives of the study were to (1) map questions in epilepsy-specific patient-reported outcome measures (PROMs) of children's health-related quality of life (HRQoL) to a proposed core outcome set (COS) for childhood epilepsy research and (2) gain insight into the acceptability of two leading candidate PROMs. Method: We identified...
Article
Full-text available
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...
Article
Background There is increasing interest in finding novel approaches to improve the preparation of children for hospital procedures such as surgery, x-rays, and blood tests. Well-prepared and informed children have better outcomes (less procedural anxiety and higher satisfaction). A digital therapeutic (DTx) platform (Xploro) was developed with chil...
Article
Full-text available
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...
Article
Full-text available
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...
Article
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...
Article
Co-production has received increasing attention from managers and researchers in public services. In the health care sector, co-production has become a by-word for the meaningful engagement of patients yet there is still a lack of knowledge around what works when co-producing services. The paper sets out a set of pragmatic principles which may guid...
Article
Full-text available
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...
Article
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...
Article
Co-production has received increasing attention from managers and researchers in public services. In the health care sector, co-production has become a by-word for the meaningful engagement of patients yet there is still a lack of knowledge around what works when co-producing services. The paper sets out a set of pragmatic principles which may guid...
Article
In the UK, there are over 40,000 childhood cancer survivors (CCS); this figure grows approximately 1,300 annually. Two-thirds are at risk of developing serious disabling or life-threatening conditions due to adverse late effects of the cancer or treatment received in childhood. Life-long, follow-up care for the surveillance and management of late e...
Preprint
BACKGROUND There is increasing interest in finding novel approaches to improve the preparation of children for hospital procedures such as surgery, x-rays, and blood tests. Well-prepared and informed children have better outcomes (less procedural anxiety and higher satisfaction). A digital therapeutic (DTx) platform (Xploro) was developed with chil...
Article
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...
Article
Full-text available
Children undergoing procedures such as blood tests and X-rays experience less anxiety and upset if they are well prepared and informed. Currently the provision of information about procedures can be ad hoc and there are barriers to children understanding this information. This study explored the perspectives of 32 children undergoing procedures (ag...
Article
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...
Article
Full-text available
Background Children often have unmet information needs when attending hospital and this can cause them anxiety and uncertainty. If children are prepared and informed about what will happen during a procedure they tend to have a better experience. Finding out what children want to know before they attend hospital for procedures, could provide signif...
Article
Full-text available
Introduction The number of young adults with complex healthcare needs due to life-limiting conditions/complex physical disability has risen significantly as children with complex conditions survive into adulthood. Respite care and short breaks are an essential service, however, needs often go unmet after the transition to adult services, leading to...
Article
Full-text available
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...
Article
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...
Article
Theoretical principles: Against a backdrop of increasing debate regarding children's voice and position within health care and the struggle to effectively implement Family-Centred Care (FCC) in practice, the concept of Child-Centred Care (CCC) has emerged. Phenomena addressed: The purpose of this paper is to explore the concept of CCC and its po...
Article
Children undergoing clinical procedures can experience fear, uncertainty, and anxiety which can cause them to become upset and resist procedures. This study aimed to capture an international perspective of how health professionals report they would act if a child was upset and resisted a procedure. An online questionnaire, distributed through netwo...
Data
Graphic illustration (a cartoon) by @ScienceofCookie explanaining this research protocol in an engaging and accessible way
Article
Full-text available
Aim To seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life‐limiting conditions. Background Internationally there are a growing number of young adults with life‐limiting conditions and/or complex needs which are degenerative, progressive and diverse and involve complex l...
Article
Children undergoing clinical procedures can experience pain and/or anxiety. This may result in them being unwilling to cooperate and being held still by parents or health professionals. This study aimed to capture an international perspective of health professionals’ reported practices of holding children still for clinical procedures. An online qu...
Article
Children and young people with long-term conditions are not always provided with opportunities to engage fully in consultations. This systematic review examined the effectiveness or worth of methods used to engage children and young people with long-term conditions in their consultations. Searches were undertaken in October 2016 in eight databases...
Article
Full-text available
Background There is increasing recognition that establishing a core set of outcomes to be evaluated and reported in trials of interventions for particular conditions will improve the usefulness of health research. There is no established core outcome set for childhood epilepsy. The aim of this work is to select a core outcome set to be used in eval...
Poster
Full-text available
Background Over 55 000 young adults aged 18–40 years old in England are living with life-limiting conditions (LLCs). This number is increasing. There is evidence of poor continuity of care for these young adults after transition to adult services, including the lack of short breaks/respite care. This lack of continuity for young adults and their fa...
Article
Background: Patient and public involvement is an emerging element of contemporary research and reflects an acknowledgement of the expertise of people who have personal knowledge or experience of a research topic. Aim: To discuss the value of consultation in contributing to the ethical and methodological choices underpinning a qualitative study....
Article
Caring for a child with complex health care needs places additional stress and time demands on parents. Parents often turn to their peers to share their experiences, gain support, and lobby for change; increasingly this is done through social media. The WellChild #notanurse_but is a parent-driven campaign that states its aim is to "shine a light" o...
Article
Purpose: Most studies of growing up with a long-term condition focus on older children and adolescents and are condition-specific. Relatively few studies address the experiences of children in middle childhood or consider their experience across a range of conditions, countries, and health settings. This study aimed to explore children's perceptio...
Article
Objective This paper considers the limitations of traditional prose-based approaches to research dissemination and explores the potential merits and tensions in adopting a poetic approach to disseminate participants’ experiences and perspectives. Discussion Drawing on our experience of using I-poetry to create first-person poems from our research...
Article
It is known that children and young people with learning disabilities, also known as intellectual disabilities, can experience high levels of fear and distress when undergoing clinical procedures.
Article
What? Why? Children in Hospital is a charitable organisation founded in 2015 that has set up a website to prepare parents, carers and children for positive hospital experiences.
Article
The Peninsula Cerebra Research Unit has produced a short report for professionals and parents. The report provides practical information and guidance.
Conference Paper
Aim This paper will present an international perspective on health professionals’ reported practice of holding children still for clinical procedures. Methods A short electronic survey was distributed internationally to child health professionals through network sampling. The survey focused on the reported practice of children being held still for...
Conference Paper
Aims This paper reports on a project which analysed parentrecorded video diaries from a parent-driven campaign, #notanurse_but, supported by WellChild. The videos aimed to reveal family life and the challenges that parents face providing high level, ongoing clinical care for their son or daughter who has complex care needs. Methods A team of four...
Conference Paper
Aims This paper will present the patient and public involvement (PPI) activities which informed the development of a qualitative study exploring the perceptions and experiences of children aged 4–12 years with long term conditions of being held for clinical procedures within acute health care settings. Methods Consultation took place in three step...
Article
Video scenarios have been used to explore clinical reasoning during interviews in Think Aloud studies. This study used nominal group technique with experts to create video scenarios to explore the ways paramedics think and reason when caring for children who are sick or injured. At present there is little research regarding paramedics' clinical rea...
Article
Full-text available
Children with profound cognitive impairment (PCI) are a heterogenous group who often experience frequent and persistent pain. Those people closest to the child are key to assessing their pain. This mixed method study aimed to explore how parents acquire knowledge and skills in assessing and managing their child's pain. Eight mothers completed a wee...
Article
Full-text available
Objectives: This paper will report on the findings of a study which investigated the influence of a befriending (parent-to-parent peer support) scheme on parents whose children have a disability or additional need. The scheme operated from an acute children's tertiary setting in the UK. Methods: A prospective concurrent mixed method design colle...
Article
We have developed an information leaflet with advice on how to support children before, during and after a planned clinical procedure, using ideas from consultations with parents and professionals. Children worry about these procedures and children who are prepared and supported through procedures have better experiences. The project developing the...
Article
Full-text available
Children can sometimes find it difficult to articulate their experiences if they have to rely solely on words. Giving children the opportunity to use arts-based research approaches can support their participation in research and create a bridge that enables them to express their perspectives and feelings. This paper focuses on the ethical and pract...
Poster
Full-text available
In the UK, there are now over 40,000 adult survivors of childhood tumours. However, approximately two-thirds are at risk of continuing substantial illness, impairment and limitations due to adverse late effects of the cancer or treatment received in childhood. To improve their health and well-being, it is essential that they have the opportunity to...
Article
THERE IS an increasing recognition of the importance of involving patients, family members and the public in health research. This involvement is commonly termed patient and public involvement (PPI) and refers to an ‘active partnership between the public and researchers’. This is different to children, young people and/or parents being participants...
Article
The number of children with complex health care needs continues to rise and they often have prolonged hospital stays with their discharge home being delayed by a range of factors. These delays occur despite the fact that, except in extraordinary circumstances, a child’s home is the most appropriate place for them to receive long-term care. The aim...
Article
There is an increase in the number of children with profound cognitive impairments who are cared for at home and who require complex interventions. Often parents are responsible for the provision of these interventions; the amount of professional support for parents providing care in the home varies. Many children with profound cognitive impairment...
Article
Full-text available
There is limited evidence to underpin the assessment and management of pain in children with profound cognitive impairment and these children are vulnerable to poor pain assessment and management. Health professionals working with children with profound cognitive impairment from a single paediatric tertiary referral centre in England were interview...
Article
Idiopathic scoliosis surgery is performed to correct a curvature of the spine. This is a painful surgical procedure which is carried out on otherwise healthy young people. This article reports on a small evaluation project which focused on young people's opinions and experiences of their pain information needs, pain management and pain assessment....
Article
Children in acute care often need procedures and interventions, and they are frequently held, often against their wishes, to enable these procedures to be completed. This report is from a qualitative investigation in which we sought to explore what happens when children undergo clinical procedures within an acute hospital, with a focus on the use o...
Article
Objective: The purpose of the study was to investigate children's perspectives of living with chronic lung disease (CLD) and their parents' long-term experiences of caring for them. Background: CLD caused by prematurity of birth is associated with continuing respiratory, neuro-developmental and psychosocial issues. Methods: 10 children (6-15 y...
Article
Full-text available
The importance of providing compassionate care to patients is well established. While compassionate care can be understood as an individual response to others' vulnerability, it is acknowledged that healthcare environments can impact significantly on this aspect of practice. This study sought to explore how health professionals and pre-qualifying h...
Article
- Accepted for publication in Journal of Paramedic Practice. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Article
The objective of this study is to review published literature on bladder augmentation in children and young adults (C&YA) with a neuropathic bladder following a neural tube defect or spinal cord injury to inform nursing practice and patient education. Medline, Embase, CINAHL, PsycINFO and the British Nursing Index were systematically searched to id...
Article
Aim Researchers and academics face many research imperatives ranging from generating income, undertaking high quality research, writing 5 star papers, developing a national and international profile through to undertaking international research. None of this is easy. This presentation aims to explore and reflect on the process and successes achieve...