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.