Tag Archives: families

Parents, researchers and charities join forces to create new resource for parents of children with learning disabilities.

The University of Warwick, Mencap, Cerebra, and the Challenging Behaviour Foundation have teamed up with parents of children with learning disabilities to produce a new Parent’s Guide on improving the well-being of young children with learning disabilities. The guide is being launched today (25th May) in Belfast and you can download the the booklet here.

Research has shown that young people with learning disabilities face more barriers to achieving well-being than children without a learning disability, but also that there are practical steps and strategies which parents can take to change this.

Combining the practical wisdom of parents with insight from the University of Warwick’s twenty years of research into the wellbeing of families of children with a learning disability, the new guide presents hints and tips, backed up by research, for parents to use in their family lives to promote the well-being of their children and to develop positive family relationships.

The Parent’s Guide has been created to help parents support the well-being of children from 0 – 5.   It offers suggestions on ways to build and support warm, positive family relationships, and also includes a chapter on activities parents and siblings can do to support the development of a child with learning disabilities.

Each chapter includes advice from parents, suggested activities, and space for personal notes and reflection.

Parents invited to give feedback on the guide befor its launch said:

  • “The tone of the booklet is really reassuring, and easy to understand. It makes a nice change from the booklets we usually read that are full of jargon.”
  • “The best bit of the booklet for me is hearing about other people’s experiences and coping mechanisms. It makes me realise that we aren’t alone. I just wish we had had something like this when our son was born.”
  • “Every chapter is so relatable, and it’s so useful to read about all of the activities.”
  • “I want to complete the reflection activity and review this to see if I did set some time aside for myself. I think that putting it somewhere I can see it, like on the fridge, will remind me to do it.”
  • “I think that this booklet is amazing information for parents to know.”

The guide has been written by Dr Samantha Flynn, Dr Vaso Totsika and Professor Richard Hastings of the University of Warwick’s Centre for Educational Development, Appraisal and Research (CEDAR), in collaboration with family carers of children with learning disabilities, Margaret Kelly and Joanne Sweeney of Mencap Northern Ireland, Tracy Elliott from Cerebra and Viv Cooper OBE and Jacqui Shurlock from The Challenging Behaviour Foundation.

The guide is supported by a policy briefing which you can download here:

Policy briefing

Dr Totsika said:

“We wanted to share what CEDAR has found out about the best ways parents can  support the well-being of children with learning disabilities in a format that was easy to understand and also easy for parents to put into practice.

“We are very grateful to the parents who worked with us on the Guide to put our research into context, and share their own experiences of supporting a child with learning disabilities through examples from their own lives.”

Margaret Kelly, Director of Mencap NI said:

“We are delighted to have worked alongside the University of Warwick, parents and various organisations to produce this wonderful guide to help support parents of young children with a learning disability.

“There are currently 5,000 children with a learning disability under the age of seven in Northern Ireland and we believe every young child with a learning disability should have access to early intervention services that support their development from birth.

“At Mencap, we are committed to ensuring children with a learning disability and their families have access to effective early intervention services and approaches and we believe this book will be of support to so many parents of children with a learning disability.”

Tracy Elliott, Head of Research and Information at Cerebra, said:

“Cerebra is the charity that works with families who include children with brain conditions.  By listening to families we know that one of their key concerns is for their child’s well-being, but they often question what well-being means for their child and how can they promote it.

“Using research evidence, this booklet will answer key questions families have and give them ideas of what they can do to enhance their child’s and family’s well-being.”

Jacqui Shurlock, Children and Young people’s lead at the Challenging Behaviour Foundation said:

“The Challenging Behaviour Foundation supports families of children and adults with severe learning disabilities whose behaviours are described as challenging.

“Families tell us that it is really difficult to get good information or support when children are small and that sometimes professionals dismiss their questions or concerns about how to manage day to day life.  Families want the right information at the right time, presented in the right way.  This booklet is a real step in the right direction.  We hope families will find it useful and we very much hope to see other researchers following this example.”

Development of this booklet was supported by an award from the ESRC Impact Acceleration Award of the University of Warwick (ES/M500434/1).

The research that primarily fed into this booklet has been funded by a grant from the Baily Thomas Charitable Fund (TRUST/VC/AC/SG/4016-6851). Some of the previous research that was included in the booklet had been supported by the Economic and Social Research Council.

Mencap, Cerebra, and the Challenging Behaviour Foundation have provided support for a number of the studies included in this booklet, both financial and collaborative.

 

 

Specsavers Name Cerebra as their Charity of the Year for Wales

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Specsavers has donated £10,000 to Cerebra to mark the start of a year-long fundraising partnership.

The optician’s 39 stores across south and mid Wales are joining forces to raise additional funds for Cerebra’s support services and research work, with plans afoot for fancy dress days and a 220-mile cycle-thon.

The donation was presented to our chief executive, Chris Jones, on 15 February when Specsavers staff from across the region visited Cerebra’s Innovation Centre in Swansea. During the visit, staff saw products the team have designed to make life easier, more inclusive and fun for children with brain conditions and also met with three families we support to see first-hand how its services are positively impacting on families in Wales and the rest of the UK. You can read their stories here:

A spokesperson from Specsavers said: ‘Cerebra is a remarkable charity that does incredible work to improve the lives of children with brain conditions, which we saw first-hand at the launch of this partnership.

‘The advice and information it provides to families goes far beyond leaflet sharing, with the charity giving practical help and guidance to families to help them get the financial and social support they need. It empowers families with the information they need to make their own decisions and solve any problems and issues they face.

‘We’re always striving to support organisations making a positive impact on our community and Cerebra is doing just that. We always enjoy raising money for charity and can’t wait to build on that initial £10,000 donation with our neighbouring Specsavers stores”.

Chris Jones, chief executive of Cerebra, says: ‘Families where a child has a brain condition face challenges every day – just to learn, play, make friends, enjoy and experience the world can be difficult, even impossible. But we don’t believe there is any challenge that can’t be overcome, and we are dedicated to helping families discover a better life together. We are very grateful to Specsavers for their generous support and are excited that they joining us on this rewarding journey to work wonders for children with brain conditions.’

1000 Families Study – We Need You!

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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.

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 2017

 

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