Tag Archives: PenCRU

What’s The Evidence? reports

The Peninsula Cerebra Research Unit (PenCRU), ‘What’s the Evidence?’ reports are an an ongoing series of short reports that seek to summarise what is known about the effectiveness of a particular treatment or therapy. These reports are a synthesis of existing research and are not new studies that have been carried out. They are written in responses to queries from families about specific therapies and treatments. These evidence summaries are intended to help families make informed decisions about treatments and therapies for their children’s health care. The team produce reports about both NHS and complementary or alternative therapies.

To find out more click here.

University of Exeter Medical School

Peninsula Cerebra Research Unit (PenCRU)

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The Peninsula Cerebra Research Unit (PenCRU) carries out a broad programme of research that aims to improve the health and wellbeing of disabled children and their families and this will relate to research that families with disabled children think is relevant and useful to their lives.

From research questions received from families or health professionals, PenCRU will look at producing What’s the Evidence? summaries from research that has been conducted elsewhere. Therefore these summaries are a combination of existing studies rather than new ones. To find out more about the Unit, please visit the PenCRU website.

To read more about the research, activities to involve families, journal publications, accessible plain language summaries of studies and conference presentations undertaken by the team, take a look at the annual report.

Download University of Exeter Annual Report 2014

You can download the latest report here:

Download University of Exeter annual report 2015

Family involvement

PenCRU runs a Family Faculty, which is families of disabled children who are interested in the research taking place at the unit. The purpose of the unit is to involve families of children with brain injury and neurological disorders as partners in setting the research agenda and to enable the active engagement of families in all aspects of the research process. To find out how you could get involved, please visit the get involved section of the PenCRU website.

In the video below, parents and researchers working at the unit provide an insight into the approach taken to childhood disability research by PenCRU.

 

PenCRU ‘What’s the Evidence?’ Compilation

The PenCRU ‘What’s the Evidence?’ reports are an an ongoing series of short reports that seek to summarise what is known about the effectiveness of a particular treatment or therapy. These reports are a synthesis of existing research and are not new studies that have been carried out. They are written in responses to queries from families about specific therapies and treatments. These evidence summaries are intended to help families make informed decisions about treatments and therapies for their children’s health care. The team produce reports about both NHS and complementary or alternative therapies.

Find out more here.

Finding and appraising information and evidence on the Internet

Finding and appraisingFamilies with children with a brain condition are often keen to look for more information about their child’s condition, therapies and treatments, or other services that might be available, and the legal rights that they and their child have.

The Internet provides a huge amount of information, much of which is freely available and easy to access if you know how to search. Although there are many reputable websites that provide good quality, reliable information, there are also websites which are less reliable and should be treated with considerable caution.

This guide outlines some suggestions to help you search efficiently on the Internet, and to appraise whether the websites you find present reliable and unbiased information.

First published 2011. This edition 2017. Review date 2020.

Download 'Finding and Appraising Information and Evidence on the Internet' PDF

Further information written by the team at Peninsula Cerebra Research Unit for Childhood Disability Research (PenCRU) can be found here.

 

Research Summary: Parent-to-parent support-does it help?

A research summary written by PenCRU and members of the PenCRU Family Faculty.

Peer support is emotional and practical support given by people who share similar experiences. It has been shown that peer support can help people with specific conditions or issues.

The idea to carry out research about peer support for parents of disabled children came from one of the parents in the PenCRU Family Faculty.

The review was led by the team at Peninsula Cerebra Research Unit (PenCRU) a childhood disability research unit at the University of Exeter Medical School.

The research was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for the South West Peninsula – known as PenCLAHRC.

A copy of the research summary can be found here.


Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Mike Shares his Story

Mike and LouieMike is father to 11 year old Louie who has Cerebral Palsy. He shares their story with us.

My name is Mike and I’m a tutor at a college in Exeter. I have three children aged 21, 20 and 11 years. One is training to be a teaching assistant and one is working as a care assistant. My youngest son Louie lives with me.

When Louie was a baby we thought everything was fine apart from just a slight delay in his development. When he was 6 months old the doctors broke the devastating news that he has cerebral palsy.

The cerebral palsy (spastic diplegia) has affected his mobility, speech and development. Louie is 11 but has the development of a 2-3year old. He is doubly incontinent and has limited speech and needs constant care and attention. He was also diagnosed with a bicuspic aortic valve (heart problem) so has a heart murmur and reflux and several other issues.

My partner and I had separated when Louie was 6 months old, but we both wanted to do what was best for our child so attended meetings about Louie together. I remember in the first meeting the doctor had to be very straight forward and factual and had to say ‘your son has a disability’. One of the things I always remember the doctor saying was ‘he’ll never play rugby’ and being a rugby player myself, hearing that was devastating.

The first thing is the shock and then the realisation that this is real and you don’t know where to go for help. I didn’t feel like there was anywhere I could go for help – I didn’t know anything about cerebral palsy, about medical conditions, what the limitations might be for our son, what the future held. I didn’t ask questions at first because I was in shock – I had been given this diagnosis that my baby won’t be able to walk, won’t be able to talk. It was difficult to know where to go to for support. What I really struggled with was that there was nothing that I could do about the fact that he had cerebral palsy. I couldn’t change this medical condition that is permanent damage to the brain; the brain can’t repair itself.

Instead of trying to find an answer of how it could be ‘fixed’ or trying to find someone to blame, the next thing you can try to do as a parent is try to educate yourself or try to find out as much as you can from other people in the same situation – not from an academic or medical point of view. How do you deal with this? What do you do about it? I mainly wanted to find out how his cerebral palsy would affect him.

I’ve been involved with the Cerebra Research Unit at Exeter University (PenCRU) for 5 years now. With PenCRU, I feel as if I am doing something, even if it’s only a little bit.  I’m doing something to try and make a bit of a difference. If I can help someone else going through the same thing to make their journey a bit easier it will be worth it. It’s about trying to use my experiences in a positive way.

Being part of the Family Faculty at PenCRU I can pass on my opinion and advice to help others make informed decisions in the same situation. It’s a bonus if I can help promote people’s awareness and help educate and inform people – I would like to be able to help those in a similar situation to me when they find themselves in the same position and support people along the way.

I really enjoyed attending a recent Cerebra conferences with PenCRU. It was great to be able to speak to the fundraisers who are trying to make a difference for your child – it was a great opportunity as a parent to share my experience. It’s great for people to see where the money goes and who it helps – you can say I am one of these people who have benefited from this and who can pass on knowledge and information.

The Peninsula Cerebra Research Unit (PenCRU) is based at the University of Exeter and carries out research that aims to improve the health and wellbeing of disabled children and their families. PenCRU is all about forming meaningful partnerships with families, working with them to undertake research.

You can find out more about the work PenCRU does here.

The PenCRU Annual Report is out now

PenCRU

PenCRU

Professor Stuart Logan from the Peninsular Cerebra Research Unit reflects on the progress made in 2014 towards improving the health and wellbeing of disabled children and their families.

The Peninsular Cerebra Research Unit is based at the University of Exeter. The team carry out a broad programme of applied research that aims to improve the health and wellbeing of disabled children and their families. Their research is funded by Cerebra.

Professor Stuart Logan, the Cerebra Chair in Paediatric Epidemiology, reflects on progress made in 2014:

“This year saw our 5th birthday, and further progress in establishing our reputation for involving families as partners in the research process. Meaningful partnership with families in research is what PenCRU is all about and underpins all we do – doing research ‘with’ families, not ‘on’ them, ‘to’ them or ‘for’ them.

For me, the most moving experience of the year was hearing some of the parents who have worked with us talk about their experiences during the annual visit to PenCRU in Exeter by Cerebra staff. Parents described the challenges they face in many aspects of their roles as carers and in dealing with services, and contrasted this with the positivity they experience acting as experts in the research process. Some of these thoughts were captured in the video Cerebra made about our work. For all the staff of PenCRU it is these relationships which make our work feel worthwhile.

On a national level, we completed the project to identify research priorities about treatments and therapies for children and young people with neurodisability. This collaborative research received keen attention from the National Institute for Health Research (NIHR) and we hope will influence the research they commission in future. Do look up the Top 10 priorities, and if you are a researcher then please think about how we can address these issues. These are the issues that young people, parents and clinicians agreed were most important to address to provide essential information to inform decisions.

PenCRU’s project highlights this year included the culmination of our study evaluating one-to-one peer support for parents of disabled children, focusing on the Face2Face services in Devon and Cornwall. A striking finding that emerged from this research was the sense of community resilience that Face2Face creates, over and above the benefits for those who use the service in times of need. We were also able to unpack essential components of the service that foster the sense of ‘shared social identify’ necessary for effective peer support.

With funding from NIHR, we were able to work with families and professionals to identify key health outcomes for children and young people with neurodisability. This work has taken on particular importance because of the policy emphasis on improving outcomes for children and young people. The study suggests several specific aspects of health that can be targeted and outcomes that could be measured. The full report was published by the NIHR Library and there are several papers that describe parts of the study in more detail. The work has also been presented at several national meetings and an international conference.

It’s fabulous to see how much influence the work we do at PenCRU has, both in terms of the positive impact on families who work with us and the interest in the research findings we produce. I look forward to building on our successes from the first 5 years over the next period in close collaboration with families, and of course Cerebra who provide the core funding that make this work”.

Professor Stuart Logan, Cerebra Chair in Paediatric Epidemiology

You can view the PenCRU Annual Report here.

PenCRU Family Fun Day

The Peninsula Cerebra Research Unit for Childhood Disability Research hold family fun day at Pennywell Farm in Devon.

The Peninsula Cerebra Research Unit for Childhood Disability Research (PenCRU) recently held their annual family fun day at Pennywell Farm in Devon.

The event was organised in order to thank the unit’s Family Faculty which is made up of all the families who have been involved in the research that the unit carries out. The day was a huge success and PenCRU wanted to thank everyone who took part, especially the unit’s very own Chris Morris.

Chris “volunteered” to take part in a cream pie challenge which saw many of the children who were in attendance queue up to make sure he was well and truly covered in pie! The staff at PenCRU even made sure there was video evidence of the challenge which can be seen below. It was all for a good cause however with Chris choosing to donate sponsorship raised through the challenge to Cerebra and our work.

The PenCRU unit aims to carry out research that is relevant to families with disabled children and is there to respond to questions from families about therapies and health services for all children and young people affected by disability.

PenCRU Childhood Disability Research Summary

pencru2PenCRU conducts a varied programme of applied research that aims to improve the health and well being of disabled children and their families.

Over the last 6 years, between 2008-2013, Cerebra have provided the core funding for Peninsula Cerebra Research Unit (PenCRU), a research centre based at the University of Exeter Medical School. PenCRU conducts a varied programme of applied research that aims to improve the health and well being of disabled children and their families. The main aims of the unit are to:

  • evaluate the effectiveness of interventions in children with brain injury and neurological disorders
  • better understand the effect of interventions on the life experience of these children, their families and parents/carers
  • provide better, accessible information to families and people with brain injury and neurological disorders about the effectiveness of interventions.

Family involvement

PenCRU runs a family faculty, which consists of families of disabled children who are interested in the research taking place at the unit. The purpose of the unit is to involve families of children with brain injury and neurological disorders in setting the research agenda and enable active engagement of parents in all aspects of the research process. Parents in the Family Faculty have been involved in a range of activities; these include developing their own ideas for research topics, helping PenCRU carry out research in progress, and helping to tell people about the research taking place through plain language summaries of research and presenting at conferences.

PenCRU is looking to engage children and young people (C&YP) in research in the future and are investigating the possibility of establishing a C&YP faculty. In 2014 the unit will pilot some engagement with a small number of schools and hope to use the learning outcomes to apply to the development of a C&YP Faculty in the future and fully involve C&YP in research activities.

Research projects

During the funding period 2008-2013, PenCRU has used the core Cerebra grant to secure further funding to conduct a varied programme of research.

James Lind Alliance – Childhood Disability Research Priority Setting Partnership
The aim of the Childhood Disability Research Priority Setting Partnership (PSP) is to identify and prioritise the most important research questions in neurodisability from the perspective of families and clinicians. The Steering Group reviewed over 800 research suggestions, once duplicated issues and out of scope submissions were accounted for; around 60 research questions are going forward for prioritisation.

Children’s Outcomes Measurement Study (CHUMS)
A NIHR funded study examining which health outcomes should be measured by the NHS to evaluate services for disabled children.

The benefits and costs of peer support
This project is evaluating the benefits and costs of providing one-to-one peer support to parents of children with disabilities.

Eating and Drinking Ability Classification System (EDACS)
A NIHR funded project to develop a valid and reliable eating and drinking ability classification system for children with cerebral palsy.

Hospital communications
This study aims to improve communication between paediatric ward staff and disabled children when they have to spend time in hospital.

Measure aspects of autistic spectrum disorder in young children (MeASURe)
MeASURe is investigating tools used to measure aspects of autistic spectrum disorder, and how well these reflect issues of importance for patients and carers.

Evaluating sleep systems for children with cerebral palsy
This review will appraise evidence of whether commercially available night-time postural management systems reduce hip deformity in children with cerebral palsy.

Sleep systems for children with Cerebral Palsy
This pilot study will test a research design for assessing how night-time postural management equipment affects sleep, comfort, pain and deformity in children with cerebral palsy.

Evaluating an intervention for mainstream schools to promote children’s positive attitudes towards disability
This study aims to use a school based survey and a literature review to facilitate the development of an intervention/educational materials for mainstream schools.

Systematic review of school based non-drug treatments for ADHD
This study aims to review non-drug interventions delivered in schools for children with ADHD.

Systematic review: involving disabled children and young people as partners in research
This project aims to carry out a literature review to find out what is currently known about involving children and young people as partners in research.

Children and young people project
This work is looking at how disabled children and young people can get involved in research and PenCRU activities.

What’s the evidence?
‘What’s the Evidence?’ reports summarise what is known about the effectiveness of a number of treatments and therapies, to give families access to the best current evidence to help them make decisions about their children.

There is a wealth of useful information on the PenCRU website about what research is, how families can get involved in research and also Plain English summaries of some of the research conducted at the unit.

www.pencru.org.uk

The next six years

Cerebra are delighted to be in a position to provide the core funding for Peninsula Cerebra Research Unit (PenCRU) for a further 6 years between 2014-2019, to continue the fantastic work they do building capacity in the area of childhood disability,  involving families in research and addressing research questions about interventions that really matter to families.

If you would like to read more about the research activities at PenCRU, their full 2013 Annual Report is available here.