A5006803431- Childhood Cancer Survivors' Quality of Life
- Adolescent and Pediatric Healthcare
- Family Support in Illness
- Palliative Care and End-of-Life Issues
- Children's Rights and Participation
- Healthcare innovation and challenges
- Healthcare Policy and Management
- COVID-19 and healthcare impacts
- Family and Disability Support Research
- Child and Adolescent Health
- Participatory Visual Research Methods
- Cancer survivorship and care
- Youth Education and Societal Dynamics
- Family and Patient Care in Intensive Care Units
- Nursing Roles and Practices
- Acute Lymphoblastic Leukemia research
- Early Childhood Education and Development
- Mental Health and Patient Involvement
- COVID-19 and Mental Health
- Ethics and Legal Issues in Pediatric Healthcare
- Health Policy Implementation Science
- Retirement, Disability, and Employment
- Technology Use by Older Adults
- Safe Handling of Antineoplastic Drugs
- Focus Groups and Qualitative Methods
University of Surrey
2016-2025
Great Ormond Street Hospital for Children NHS Foundation Trust
2023
London South Bank University
2010-2016
Health Net
2010
University of Nebraska at Kearney
2010
Gibson Energy (Canada)
2010
University College London
2007-2009
Great Ormond Street Hospital
2009
Institute of Child Health
2008
Royal College of Paediatrics and Child Health
2008
Researchers are responsible for using techniques that allow children to contribute their perspectives in a way is most suited strengths and preferences. The draw write technique method needs be used carefully sensitively if become active participants revealing world as they see it. In this article, we explore the issues child researcher of participatory research methodology. Reflections on drawn from our experience it with aged 6 12 years. This was part larger study undertaken enable 4 18...
Objectives To conduct a UK-wide survey of young people who have experienced cancer, carers and professionals, to identify prioritise research questions inform decisions funders support the case for with this unique cancer population. Design James Lind Alliance Priority Setting Partnership. UK health service community. Methods A steering group oversaw initiative partner organisations were recruited. Unanswered collected in an online survey. Evidence searching verified uncertainties. An...
This paper reports on a participatory research project exploring children’s experiences and views of cancer care services. It focusses findings from interviews conducted with 10 children aged four five years old. Play puppets were used to help express their views. The themes elicited reveal important aspects hospital for young children, such as having ‘lots toys’ available that ‘mummy daddy are near’. use play data‐collection method is discussed, along the implications support who have cancer.
Abstract Background During COVID-19 pandemic, a rapid readjustment to continued delivery of healthcare was required. Redeployment is an intentional process mobilise human resources by reassigning worker new role or work location, achieve sustainable patient care. We report redeployment experiences staff from specialist children’s hospital during first and second waves the United Kingdom pandemic. Methods This study focuses on where occurred externally adult intensive care units other...
Setting research priorities together with children and young people (CYP) in James Lind Alliance (JLA) Priority Partnerships (PSPs) is an example of involving CYP from the beginning process. In these PSPs, can be involved steering groups, surveys, focus groups final priority-setting workshop. The success JLA PSPs evident, but it important to note that specific guidance has not been available on how involve aged under 18 years. We aimed collect experiences tips who have taken part a exercise...
The involvement of children and young people themselves, rather than that their caregivers, in healthcare research affects them, has increasingly been recognized as essential. However, the significance being experts by experience, when participating shaping received less attention. This article discusses findings from British-English Linguistic Validation Study Sisom. Sisom is an interactive computerized symptom assessment communication intervention helps ill convey physical, functional...
Introduction The process of transitioning young people from children’s or adolescents’ health services into adults’ is a crucial time in the lives and has been reported to be disjointed rather than preparation which they are involved. Such transitions not only fail meet needs families at this significant change, but may also result deterioration health, disengagement with services, can have deleterious long-term consequences. Despite wealth literature on topic, there yet focus what works for...
Technology is becoming an important medium for supporting patients in health care. However, successful application depends on user acceptability. The Advanced Symptom Management System (ASyMS) involves reporting cancer chemotherapy-related symptoms using mobile phone technology.The aim of this article was to report a study how young people were involved the development ASyMS Medical Research Council framework evaluating complex interventions.A convenience sample aged 13 18 years undergoing...
Aim To describe and evaluate two approaches – a storyboard wordsearch that the authors used with children aged four to 12 years obtain assent. Background The assent process is vital in helping understand elements of research project make choice whether or not participate. However, methods for obtaining are well documented. Data sources Two researchers' thematic reviews primary researcher's field notes, taken during study eating problems chemotherapy. Discussion appeared be an enjoyable,...
Abstract Background Both under‐ and overnutrition may have adverse impact on outcome of cancer in children teenagers/young adults (CTYA). Previous studies confirm that screening for nutritional risk detection abnormality is inconsistently undertaken practice. Methods We undertook a survey dietetic resource assessment CTYA principal treatment centres (PTC) the United Kingdom. Responses were received from 95% children's 69% TYA PTC. Results Only 13/18 (72%) PTC, one 11 (9%) met national...
Background: The transition from child to adult services is a crucial time in the health of young people who may potentially fall into poorly managed 'care gap'. Health service provision, which fails meet needs and families at this significant change, result deterioration or disengagement with services, can have negative long-term consequences. Developing transitional care packages has become focus activity United Kingdom elsewhere. Indeed policy documents been trying guide practice for many...
Objectives To engage children who have experienced cancer, childhood cancer survivors, their families and professionals to systematically identify prioritise research questions about inform the future agenda. Design James Lind Alliance Priority Setting Partnership. UK health service community. Methods A steering group oversaw initiative. Potential were collected in an online survey, then checked ensure they unanswered. Shortlisting via a second survey identified highest priority questions....
ASyMS © is an Advanced Symptom Management System utilising mobile phone technology to monitor chemotherapy-related symptoms and promote self-care. It was first developed with adult cancer population now being evaluated young people through iterative development process. involves patients recording sending symptom reports the hospital receiving tailored self-care advice. Health professionals are alerted when severe reported. Three phases of -YG (young people) study complete. Phase 1 involved...
Families and healthcare professionals caring for a sick or disabled child without definitive diagnosis face unique challenges, particularly in relation to managing uncertainty, access coordination of care. There has been little research exploring the impact this on families, their support needs experience health services.This qualitative interview study included interviews with 14 mothers children undiagnosed genetic conditions. Transcripts were analysed using thematic analysis.Four themes...
Previous priority setting exercises have sought to involve children, but in the final reporting, it is evident that few children had been engaged through process. A primary aim Children's Cancer Priority Setting Partnership was find out from what they want research focus on. We report on our experience inform methods of engagement with future James Lind Alliance Partnerships and similar exercises. followed process, collecting shortlisting questions via online surveys adult survivors...