Tag Archives: research

Cerebra Family Research Ambassador Project

At Cerebra we believe in listening to families and using what they tell us to inspire research, innovation and information.  One area that parents have told us that they struggle with is dealing with statutory agencies in relation to the provision of health, social care and education support services.

As a response to this Cerebra funds research by Professor Luke Clements to explore practical and effective ways of resolving the commonly occurring problems families face.  As a result we have developed a number of resources, based on cases raised with us by parents and carers within our Legal Entitlements Research Project. We have a lot of reliable, up-to-date and evidence based information and the job now is get that information out there for parents and carers to use to improve their family life.

Cardiff Law School, together with Cerebra, have been awarded funding by the Economic and Social Research Council (ESRC) to help us to improve the impact of our research.  With that money we have launched a new project, The Family Research Ambassador Project, which will involve parents and carers of disabled children in helping us to make our pool of existing information much more accessible and engaging to others.

The project’s main aims are:

  • to produce a ‘Problem Solving Toolkit’ that deals with these commonly occurring problems in accessing services
  • to test, improve and build on the toolkit
  • distribute this as widely as possible within various disability support groups and to parents of disabled children
  • to give parents and carers the confidence to tackle decisions and to feel supported

In the longer term we hope to write and publish a peer reviewed academic paper evaluating the Family Research Ambassador Project and (funding permitting) use our first intake of Family Research Ambassadors to train the next intake, with the aim being to spread this project as wide as possible.

We have taken on eight Family Research Ambassadors (FRAs) to assist in bringing this toolkit together and to circulate and promote this to disability support groups and social media.  We value their experience, skills and knowledge of disabled children and this is our opportunity to introduce them to you:

Alison Thompson is the mother of two young adults, one of whom has ADHD and Asperger’s syndrome. She is the author of ‘The Boy From Hell: Life with a Child with ADHD’ and speaks regularly about her experience of parenting a child with the condition. She is also a trained coach who works with parents of ADHD children to help them build their confidence and overcome some of the struggles of parenting a child with special needs.

Lisa Reakes has been helping the families of disabled children through her part-time volunteer work with Somerset Parent Carer Forum and as SEN parent governor. Her daughter has a physical disability with epilepsy.  She has a background in fundraising and marketing.

Claire King has 2 boys aged 5and 8. As a mum of a child with hearing loss, ADHD and Asperger’s syndrome, she has first-hand experience of the challenges parents face in everyday life as well as the challenges in accessing the services available.  Claire is very passionate about helping other parents who face similar obstacles and strives to assist others overcome these barriers.

Dawn Cavanagh lives in Pembrokeshire with her husband and son. Her son attends a special school and has autism, epilepsy, ADHD and learning difficulties.  She is currently studying for a master’s degree in Abnormal and Clinical Psychology at Swansea University.  Her particular research area is learning disabilities and bereavement.  She is also a volunteer for adults with learning disabilities.  In her spare time she loves to dance or go for a stroll along one of Pembrokeshire’s beautiful beaches.

Sian Taylor is a Senior Lecturer at Cardiff School of Management, Cardiff Metropolitan University. She has two boys aged 10 and 6. The youngest has complex special needs. Sian is an Ambassador for Cerebra, a Trustee for WellChild and also a member of their parent advisory group and regional advisory group. She participates in a University of Surrey steering group for eHealth and also a focus group for Diverse Cymru. She is interested in many areas regarding child disability.

Karin Crimmins is Mum of 2 wonderful girls, the youngest of whom has Down’s Syndrome. She is passionate about sharing information, assisting and supporting others in relation to the provision of health, social care and education support services. She understands the frustration and hurdles that parents and carers face and that not all parents are able to advocate for their children, hence her desire to be involved in this project. Karin has been able to ensure that her daughter receives the correct level of support for her needs and wishes to pass on her knowledge and experience to others. Karin has a very active role within the voluntary sector as she is the membership secretary/newsletter editor for the South East Wales Down’s Syndrome Support Group and is an administrator for the Future of Downs group.

Marie Macey is the mother of three children, her youngest son having autism and moderate/severe learning disabilities. She is a retired social worker, having worked largely with supporting foster carers, but also worked in a children’s disabilities team. She has been involved in the Legal Entitlements Research Project since the beginning and is delighted by its development. She has also been actively involved in various disability support groups in and around Cardiff for the last 20 years, promoting the project through these groups.

Wendy Merchant is a registered child nurse who is committed to advocating child, young people and family rights and involvement. Wendy is an experienced facilitator who is good at motivating others, chairing meetings and seeking sources of support for families. She is a self-motivated individual who is passionate about the delivery of compassionate care in the NHS. Currently Wendy is a PhD Student at UWE, Bristol, researching “Caring for children with special needs on a hospital ward. Mothers and nurses experiences.” Wendy has experience of supporting parents as an organiser of a parents support group, as a family support worker and on an informal basis as a mother of a disabled child.

We will bring you updates on the work of the project throughout 2016.

1000 Families Study – We Need You!

pairing-bella

Are you the parent or parental caregiver of a child aged 4-11 years that has a learning disability? If so, please take part in our new ‘Cerebra 1000 Families study.’ Your child might have other conditions – such as Autism, or any one of a number of genetic syndromes. As long as your child also has a learning disability, we would be very keen to hear from you.

The Cerebra Family Research Group at the University of Warwick, in collaboration with the research charity Cerebra, wishes to explore the experiences of families who live with a child with a learning disability in the UK. We want to make this the largest study ever of families of children with learning disability in the UK.

This research will further our understanding of what it is like to raise a child with a learning disability in the UK and will help shape future support for families and children.

You can find out more about and take part in the survey here.

You can view a video about the research project here.

University of Warwick logo

If you have any questions please don’t hesitate to contact the research team on familyresearch@warwick.ac.uk or call 02476 524139.

Volunteers Needed for Research Study

EU-AIMS study

EU-AIMS study

European Autism Interventions – A Multicentre Study for Developing New Medications (EU-AIMS) are looking for volunteers to take part in exciting new research.

Their latest study will be looking at brain development and behaviour in both the general population and in people with autism spectrum disorder.

They are looking for children, young people and adults aged 12 – 30 years old to take part in their research.

The study will involve online questionnaires as well as two half-day visits to the Institute of Psychiatry in London. The visits would include in-person tasks and tests , a brain scan and a blood or saliva sample.

If you would like any further information, please contact eu-aims@kcl.ac.uk or 02078480844.

You can also visit their website here: www.eu-aims.eu

University of Exeter Medical School

Peninsula Cerebra Research Unit (PenCRU)

UoEMS%20logo
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.

 

University of Barcelona

BarcelonaThis research group’s main strategic objective is to identify brain injury biomarkers (indicators) in perinatal life (the first weeks of life); that would allow the team to define measures for early intervention, which would potentially benefit thousands of families across Europe every year. The researchers now understand more about the mechanisms involved in fetal brain damage due to hypoxia (lack of oxygen) and how the brain establishes different ways of protection, and have also refined specific neuro-psychological tests detecting subtle delays in newborns. They have also developed unique protocols to perform MR imaging in infants during natural sleep. All this helps with early diagnosis and the identification of appropriate interventions.

This interdisciplinary research team is composed of specialists in fetal and paediatric medicine, basic scientists and bioengineers, allowing a holistic approach to their research. They are integrating research from prenatal to postnatal care in the Unit’s functional design, so that the fetus and child are seen as the same patient over time; this is a unique model to allow early diagnosis and the identification of potential therapeutic targets.

To read more about the research activities undertaken by the team, take a look at the annual report.

Download University of Barcelona Report 2014

You can download the latest report here:

Download Barcelona Annual Report 2015

University of Warwick-Cerebra Family Research Group

A new funding award has been granted to Professor Richard Hastings, who will lead on the  ‘Cerebra 1,000 Families’ project, the largest longitudinal research project in the UK about families and disability.

The study will recruit a UK sample of 1,000 families living with a child with a neurological condition of school age (4-11 years at the beginning of the study). Initial data collection will take place in 2014-2016, with repeat data collection in 2017-2019. Measures will focus on the wellbeing of the child, and also parents, siblings and potentially grandparents. To find out more about the project and keep up to date with it’s progress click on the link below:

Cerebra 1000 Families Study

To complete the survey, please click here

To read more about the research activities undertaken by the team, take a look at the annual report.

Download University of Warwick Annual Report 2014

You can download the latest report here:

Download University of Warwick Annual Report 2015

You can read the paper they talk about in the video here.

University of Birmingham

730x274_fitandcropThe Cerebra Centre for Neurodevelopmental Disorders is headed by Professor Chris Oliver and is based in the School of Psychology at the University of Birmingham. The research at the centre is funded by Cerebra with additional support from a number of agencies and charities.

The research undertaken focuses on the difficulties experienced by children and adults who have intellectual disability, autism spectrum disorders and genetic syndromes that are associated with developmental delay. A team of clinical and academic psychologists, undergraduate and postgraduate students and volunteers conduct high quality research into emotional, cognitive and behavioural difference and disorder in individuals with these neurodevelopmental disorders. More information about specific research projects taking place can be found on the centre’s project pages.

To read more about the research activities, journal publications and conference presentations undertaken by the team, take a look at the annual reports available here:

Download University of Birmingham Annual Report 2015

 Download University of Birmingham Annual Report 2014

Appendices to the report can be viewed here:

Download Appendices to Annual Report 2015

 Download Appendices to Annual Report 2014

Information is also available on the University of Birmingham website.

FIND image

The FIND website is for parents/carers and professionals. It provides information about neurogenetic disorders including Cri Du Chat, Angelman and Cornelia De Lange. For professionals there is access to an interactive database. The website also gives information on current research projects that are being conducted in individuals with rare genetic syndromes and neurodevelopmental disorders. To access the website please click here.

Parents who have been involved in research at the Centre have shared their stories about raising a child with a rare genetic syndrome. To see their stories please click on this link.

In the video shown below, Dr Jane Waite, a Post Doctoral Research Fellow provides an insight into the research taking place at the centre.

 

 

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.

About Cerebra

Family relaxing togther

Supporting families in their everyday lives

Founded in 2001, Cerebra is a unique national charity that strives to improve the lives of children with neurological conditions, through research, information and direct, on-going support.

Living with neurological conditions can make life very hard, not just for the child, but for their family too. At Cerebra, with the help of our supporters, we aim to make it easier.

Our support services:

We offer:

  • information and advice on a number of topics, over the phone or through our website
  • face to face support through our network of Regional Officers who can help with form filling and letters, completion of the Disability Living Allowance form, meetings, specific local information and activities
  • a sleep service to give advice and support to families on a wide range of sleep issues
  • a free postal lending library for books and sensory equipment
  • an innovation centre who design bespoke equipment to meet family’s needs
  • a monthly e-newsletter full of informative articles and stories
  • workshops and other events across the UK.

Our research:

We sponsor research at six world leading university research departments which:

  • aims to understand the causes of cognitive, behavioural and emotional problems experienced by children with rare genetic disorders
  • helps families access their legal rights and entitlements to health ad social care
  • would allow doctors to define measures for early interventions that would improve the life chances of babies
  • aims to predict mums at risk of early delivery and prevent it from happening so that fewer babies need neonatal intensive care and do not suffer the complications of being born too early
  • Focuses on the wellbeing of the child and their parents, siblings and, potentially, grandparents
  • involves families affected by childhood disability in research to ensure research topics are relevant and important to families

The Information Standard

information-standard-member-logo-positive_graphic-onlyCerebra’s aim is to provide high quality health and social care information for the parents and carers of children aged 0-16 years with neurological conditions. Cerebra has been a certified member of the Information Standard since August 2013. The Information Standard is an independent scheme, supported by NHS England, to ensure only the highest quality health and social care information is produced. This means that our relevant products have been through the schemes rigorous quality control procedure. For more details on what it means to have achieved the Information Standard certification, visit:

http://www.england.nhs.uk/tis/

Cerebra’s objectives are to:

  • Use only current, relevant, balanced and trustworthy sources of information and ensure they are clearly referenced
  • Inform parents and carers about different conditions and the issues surrounding these so that they have a better understanding
  • Empower parents and carers to make their own decisions and resolve problems and issues

Cerebra is responsible for the accuracy of the information produced. The Information Standard shall not be responsible for any inaccuracies or omissions in the information published on Cerebra’s website. Weblogs, forums and personal experience pages/videos are excluded from the scope of certification.

Who we help:

We help children 16 or under with a wide range of neurodevelopmental disorders and conditions.  The general areas we cover are listed below with a few examples of conditions that fall within the broader categories:

  • Cerebral Palsy
  • Autistic Spectrum Disorders
  • Developmental disorders like global developmental delay, dyspraxia and learning disabilities.
  • Seizure disorders such as Epilepsy, west syndrome, lennox gastaut syndrome and dravet syndrome.
  • ADHD
  • Traumatic Brain Injury like head injury and shaken baby syndrome.
  • Acquired Brain Injury due to infections like encephalitis and meningitis, stroke, brain tumours, hypoxic event or haemorrhage.
  • Down syndrome and other Chromosomal/Genetic conditions  – Some examples being Trisomy 13 (Patau syndrome) and 18 (Edward syndrome), Fragile X, Angelman syndrome, Prader-willi syndrome, Cornelia de Lange, Rett syndrome, Williams syndrome and chromosome deletion disorders.
  • Brain Malformation/Abnormality like Agenesis of the corpus callosum, Dandy Walker syndrome, Arnold Chiari malformation, lissencephaly, microcephaly and macrocephaly.
  • Degeneration of the brain – Cerebral atrophy and Periventricular Leukomalacia for example.
  • Hydrocephalus
  • Conditions caused in utero such as Foetal alcohol syndrome or as the result of some sort of toxin.

Meet our Senior Management Team

For more information on what we do please get in touch with us on 01267 244200 or enquiries@cerebra.org.uk

 

Sleep seminar

father and sleeping baby
On 13th November Cerebra held a seminar at the Thistle Hotel in Birmingham on ‘Sleep in children with developmental difficulties’. The event was held in conjunction with the Cerebra Centre for Neurodevelopment Disorders at the University of Birmingham.

The purpose of the seminar was to disseminate the findings of recent sleep research including the use of both behavioural and medical interventions and to describe the practical implications for parents and professionals.

Key speakers included:

  • Dr Andy Badshaw (University of Birmingham)- An introduction to sleep
  • Prof Paul Gingras (Guys and St Thomas) – Sleep in children with neurodevelopmental disorders
  • Lisa Fishwick (Parent) – The impact of having a child with sleep disturbances
  • Moira Draper (Cerebra) – Cerebra sleep services
  • Dr Luci Wiggs, (Oxford Brookes University)- Non-pharmacological approaches to sleep problems in children with neurodevelopmental disorders
  • Sleep research at the Cerebra Centre for Neurodevelopmental Disorders.

We had a very good turnout, with 74 delegates attending on the day. The presentations were excellent and stimulated much dynamic discussion amongst the group. Delegates said the day provided ‘good variation of topics and good signposting to relevant services; definitely felt more empowered to deal with sleep issues’ and stressed how important it was to have a parents view of sleep problems and their approach to a solution.

Next time delegates would like a dedicated seminar addressing sensory processing, challenging behaviour and mental health in children with developmental disabilities and more parent stories, talking about what worked for them.