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Welcome to the NIHR CLAHRC Community e-newsletter 
 

Children and young people issue

Welcome to the community e-newsletter for the National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) bringing you the latest news and interesting developments from across the nine collaborations and the health service research community. This edition coincides with WUniversal Children’s day, and showcases the work the CLAHRCs are doing on children and young people. The CLAHRCs are funded by the NIHR and form part of the NIHR infrastructure.
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 Moving care closer to home for children: stakeholder views and barriers to implementation
Providing care closer to home by moving health services out of hospitals into community locations has been advocated as a way of improving access to healthcare, increasing patient satisfaction and relieving demand on hospitals. However, there are very few studies around moving paediatric outpatient services into community settings. Researchers from the CLAHRC for Birmingham and Black Country evaluated two consultant-led outpatient clinics provided in the community by Birmingham Children’s Hospital. The research, published in Health & Place, showed that while the concept of care closer to home was sound in theory, there were significant financial and practical challenges in practice. Services must, at the very least, replicate hospital outpatient care standards and provide equal access for families. The hospital was thought to deliver the ideal outpatient service model, but reproducing this in the community using a ‘drag and drop’ approach had few additional benefits. To be effective, models of care closer to home require service redesign as well as relocation. New services should take into account the views of service providers and service users.
 
Early Years theme projects in Northwest London
The lifelong benefits of early health interventions have been well catalogued, and can aid the health of the individual as well as the performance of the healthcare system. The CLAHRC for Northwest London (NWL) has an Early Years theme with projects that work to enhance the care and quality of life specifically for children. Itchy, Sneezy, Wheezy concerns the most common long term condition in children: allergies. The project has found success in its multidisciplinary and competency-based approach featuring training for all health professionals, teachers and school staff, patients, and carers, and in community based specialist paediatric allergy clinics. Preliminary analysis indicates a 21.9 per cent decrease in unscheduled care was observed in our project area, as compared to a comparable area’s decrease of 4.5 per cent. The project was shortlisted for a 2013 British Medical Journal Improving Health award, and the website has had more than 60,000 page views.
 
Another project in the CLAHRC for NWL Early Years theme approaches Sickle Cell Disease (SCD). SCD is the most common genetic disorder worldwide, and has seen a 50 per cent rise in UK admissions to hospital from 2001 to 2010. Local surveys and focus groups have been carried out by the CLAHRC for NWL which gauged patient experience and expectations of the healthcare system. Further studies have shown that following an SCD hospital admission those that are young and those in the most socio-economically deprived areas were most likely to be readmitted. Find out more about the Early Years projects.
 
Developing a national public health tool for monitoring child health
Over the past four years the Maternal and Child Health theme within the Leeds, York and Bradford CLAHRC (LYB) have been working closely with ChiMat (Child and Maternal Health Observatory) and the Department of Health to develop a population based tool to help with mapping the potential future outcomes for children aged five years, based on indicators of the family around birth and up to nine months of age. The outcomes are based on learning and development, behaviour and health.  The indicators used and the weightings given within the tool are based on academically rigorous research carried out by the University of York. PREView is a set of planning resources to help commissioners, managers and professionals to target preventive resources, in particular around the Healthy Child Programme and the PREView tool is now live.
 
Text messaging to prevent repetition of self-harm in youngsters
A team from the South West Peninsula CLAHRC (PenCLAHRC) is exploring the potential of text messaging as a way to deter children and young adults from repeat self-harming. TeenTEXT builds on previous research which shows that regular contact with those at risk of self-harm reduces repetition. The previous research considered ‘traditional’ means of communication such as letters, postcards and phone calls, and TeenTEXT is exploring the potential of a newer means of communication more popular with the target age group. The project will design and secure funding for a randomised control trial to determine the effectiveness and benefit to children and young adults who self-harm. Find out more.
 
WICKED - Working with Insulin, Carbs, Ketones and Exercise to manage Diabetes
WICKED is a structured education programme for young adults with Type 1 diabetes in transition from paediatric to adult care, developed by Sheffield Teaching Hospitals NHS Foundation Trust and The University of Sheffield. WICKED was created following evaluation of age appropriate DAFNE (Dose Adjustment for Normal Eating) courses. Feedback from educators and participants identified the need for more focus on issues meaningful to young people at this time in their lives; employment, leaving home, driving, travel, eating out and the risks of alcohol, smoking and recreational drugs. Relationships, sexual health and pregnancy are also discussed in a confidential environment where participants can share experiences of living with diabetes. The five-day WICKED course covers key concepts of physiology, carbohydrate counting and insulin dose adjustment and the management of health complications. Sessions are delivered with peer support to identify personal targets and goal setting. WICKED aims to engage young people with their condition and provide them with competencies needed to self-manage their diabetes effectively and safely, for life. Find out more here or contact Vanessa Whitehead at Vanessa.e.whitehead@sth.nhs.uk
 
Emotional wellbeing training for foster carers
Research has shown that young people in care are at increased risk of emotional and behavioural disorders. Researchers in the CLAHRC for Cambridgeshire and Peterborough (CP) have been working with Cambridgeshire County Council Children's Services to devise emotional wellbeing training for foster carers. This training will include two films made by young people both in and leaving care. The first of these films, My name is Joe is about being taken into care. The second film, Finding My Way, is about leaving care and had its premier screening in October at the Cambridge Arts Picturehouse where the young people involved in the film took part in a question and answer session. The impact of producing these films is captured in two ‘behind the scenes’ films for My Name is Joe and Finding My Way.  My Name is Joe is now being used in many local authorities to train foster carers and others working with looked after children and young people.  Find out more about the pilot or email Valerie on vjd20@cam.ac.uk
 
Supporting local HEROs in Leicestershire, Northamptonshire and Rutland
The CLAHRC for Leicestershire, Northamptonshire and Rutland (LNR) supported a number of initiatives to improve health in the community. The Heath Education Reaching Out (HERO) programme provided health education to schoolchildren and to families with a history of cancer. The HERO Schools Project aimed to educate and inspire children to take responsibility for their own health, diet and well-being. Through fun and interactive workshops, it promoted awareness of the link between unhealthy diet, sedentary lifestyle and health problems in later life. Find out more.
 
The HERO Family Cancer Project developed interactive educational workshops for patients and their families to learn about cancer, with information and advice about cancer prevention and survivorship. Workshops included talks and activities about diet and exercise, recent research findings, genetics, chemoprevention, support groups and counselling. The project engaged with the public through community partners, public talks, events, websites, information champions and information hubs. Find out more.
 
Starting Schools study at Leeds, York and Bradford
The Maternal and Child Health theme from the CLAHRC for LYB has been working with schools in West Yorkshire to assess how early life factors such as parenting, health, and socio-economic position influence children’s educational development. The study also aims to find out how early fine motor skills and early literacy skills are linked and how this affects later educational attainment. They then hope to identify which child and parental characteristics are associated with emotional and social well-being, how this changes over time and how this affects cognitive development
 
Each school is given feedback reports to help in the diagnosis of individual pupil difficulties so they can make specific interventions to improve attainment.  For example, a practitioner at one of the schools has taken some of the resources provided and used information from the assessments to develop sessions in-house for improving the fine motor skills of their children. The school was filmed for an ITN Calendar news report last week which demonstrated how the use of a robotic arm can provide training to improve these motor skills. Find out more.
 
Redesign of children’s urgent care
A team from the PenCLAHRC is investigating ways in which hospitals can safely reduce the number of emergency admissions of children. The team is working with a local hospital on the following aims: to reduce the amount of time children spend in the emergency department (ED); to ensure that the care children receive in the ED is appropriate to them, and; to ensure that assessment and treatment take place in an appropriate environment. It is hoped that the project will result in fewer paediatric cases in ED and, where there are such cases, that children receive care and treatment that is right for them. Find out more.
 
Whose Diabetes is it?
In 2011-12 the User-centred Healthcare Design theme of the CLAHRC for South Yorkshire (SY) worked with young people with type 1 diabetes and their families in Rotherham and Barnsley. This innovative work led to a proposed information and support service that puts young people at its centre. This service was co-created by the young people, their families and key staff from the Rotherham Hospital Adolescent Diabetes Service through a creative design-led process. The proposed service streamlines all that is positive about the existing provision into one brand and information resource ”Whose Diabetes is it?” that brings in expertise from both inside and outside the NHS, in the form of peer support groups and clinical staff. This information is delivered via means that better fit young people’s lifestyles such as text messaging, websites and in person. Finally it allows for young people and families to receive reassurance from others who know “what it’s like”.  View the service visualisation and final report.
 
Peninsula Cerebra Research Unit
Much of the research work in the South West around the care and support of children with disability and special needs, and their parents, carers and families, is carried out by the Peninsula Cerebra Research Unit (PenCRU). PenCRU is supported by the charity Cerebra and many of its projects are also supported by the PenCLAHRC. PenCRU is very much about listening to children and their families and responding to them about therapies and health services. PenCRU provides summaries of the evidence for different services and treatments to help families make decisions, and where the evidence is lacking it seeks funding to conduct clinical trials to assess the effectiveness of interventions on outcomes that families claim are important, such as function, social inclusion and participation, and quality of life. Find out more and view an example of a specific project.
 
Further information
Further information on the nine CLAHRCs, including links to their own web resources, is available on the NIHR website at www.nihr.ac.uk/infrastructure. This newsletter is produced by the CLAHRC Partnership Programme based at Universities UK on behalf of the CLAHRC community- see www.clahrcpp.co.uk.  If you have any ideas or suggestions for the newsletter, please contact Jenny Hawkins at jenny.hawkins@universitiesuk.ac.uk.