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.