Tag Archives: CEDAR

Why Our Research is Important – Cerebra Family Research Group

Centre for Educational Development, Appraisal and Research (CEDAR)
University of Warwick
Cerebra Family Research Group
“Strengthening families”

Why our research is important

One of the biggest influences on the development of all children is their family. Children with brain conditions are no different to all other children in this respect – their development is also affected by what happens within their family. The context of the family affects all children’s development in at least three ways:

  1. Parents and carers approach parenting in different ways, and how parents raise their children can affect how children develop both positively and less positively.
  2. The economic context in which families live has a big impact on children’s development. This includes poverty, parents being out of work, and factors such as the quality of the housing in which families live.
  3. Parents and other family members who are under significant stress may affect the well-being of children within the family.

Within this context, the research carried out by the team at Warwick focuses on three big issues for families of children with brain conditions, specifically children with a learning disability and/or autism:

  • Demonstrating that the same family factors that influence the development of all children affect the development of children with learning disability and/or autism. We do this by focusing on analysis of large UK national studies of thousands of children that also include some children with learning disability/autism (e.g., the Millennium Cohort Study). The Cerebra 1,000 Families Study is also designed to contribute to this area of research as we can now start to follow these families over time to generate new research findings that can be used to improve family life.
  • How can parents and other family members can be supported to maximise positive developmental outcomes for their children with learning disability and/or autism? We address this issue by developing and/or testing interventions that can give parents key skills to be more effective in their task of raising children with learning disability/autism. We also develop and/or test interventions designed to directly improve parents’ well-being.
  • Attempting to redress the balance for families of children with learning disability and/or autism. Parents and other family members of children with learning disability/autism are typically portrayed as suffering significant stress when raising their children. This is perhaps true, but misses the fact that raising a child with learning disability/autism is also a positive experience and results in many rewards for families. In our research, we explicitly study family members’ (especially parents’) positive perceptions and experiences when raising children with learning disability/autism. The Cerebra 1,000 Families Study has been designed from the start to capture positive experiences as well as the challenges of raising children with learning disability/autism.

Progress from January 2014 to December 2017

Some key indicators of progress from the Cerebra Family Research group are:

  • Recruitment of 1,013 families of children with learning disability (ages 4-16 years) into the Cerebra 1,000 Families Study.
  • We have grown the research group so that by December 2017 there are 14 team members working actively on family research.
  • From a Cerebra investment of £270,000 over six years we have attracted approximately £2.8 million by December 2017 (four years) to support additional family research.
  • Our funding initially included two full time PhD studentships from 2014-2019, and we have used that funding to part-support and attract a total of 10 PhD students – contributing significantly to the size of the future family research community in the UK.
  • We have published 28 scientific research papers, and at least a further 17 outputs disseminating information about family research to family members.
  • We have given 63 conference and other presentations on family research, at least 19 of which were to audiences of family members.
  • We have developed active partnerships on family research with at least 22 UK and international Universities, and have provided training and internships for seven researchers (in addition to our PhD students).
Longer term impact of the Group’s research for families

Our research team’s work is always designed from the start to achieve longer term impact for families. We work with parents and external partners to use the findings from our research to influence policy and practice, and we use our research findings to develop interventions to directly support family members (especially parents). By December 2017, the following illustrate the impact of our research for families:

  • We have partnered with at least 21 non-government and government organisations in the UK and internationally to carry out and use family research. Notable successes include: the use of our family research findings in two NICE guidelines and influencing a further NICE Quality Standard, several reports and guidelines produced as a part of the Transforming Care Policy Programme, and influencing (with Mencap) the Public Health Agency in Northern Ireland to include children with learning disability and their families in their early intervention policy.
  • Our research group has pioneered the development and testing of mindfulness-based interventions to improve well-being for parents of children and adults with learning disability and/or autism. New research funding (from the Baily Thomas Charitable Fund) will test in a Randomised Controlled Trial design whether online mindfulness intervention can help to improve parents’ well-being.
  • We have also tested an early intervention to increase the skills of parents of children with autism (funded by Autistica), and have a new project to test an early intervention for families of children with learning disability (Early Positive Approaches to Support, developed by a team that included Professor Hastings, and funded by the National Institute for Health Research Public Health Research Programme)
  • Working with Cerebra (and Mencap and the Challenging Behaviour Foundation) and with parents, Dr Totsika from the Warwick team is currently developing a booklet translating our research findings into practical advice for families (funded by the Economic and Social Research Council).

You can find out more information about the team at Warwick and watch a video about their research here.

Why should I take part in research about families of children with learning disabilities?

University of Warwick logoThe CEDAR research centre at Warwick University needs 1000 children with learning disabilities and their families to help with a research project.

Jane Raca, whose son James has learning disabilities, autism and challenging behaviour, considers how research can help families like hers:

If someone had asked me to help with a research project when my son James was little, I would probably have asked them to go away. I was usually very tired and grumpy, because James didn’t sleep through the night. He is autistic and has learning disabilities. He often woke in the early hours and because he needs one-to-one supervision, I had to be awake too. My joints ached from moving and handling him, as he is a wheelchair user and doubly incontinent. All of his care needs were carried out by me or his Dad and despite the hoists in our house, this physical care was time consuming and heavy work.

James is now 17 and goes to a specialist boarding school, so I get a reasonable night’s sleep. If someone asked me to help with a research project today, I would be much more co-operative. But rest is not the only thing which has changed my approach. I have come to appreciate just how powerful evidence can be in influencing government policy and how it can result in more investment for disabled children.

When James was 5, family life was very difficult. He was frightened of leaving the security of the house and had a phobia about getting in the car. As a result, his brother and sister ended up trapped at home a lot of the time. I was deeply worried about them. What we really needed was someone to look after James to give us a break, so we could go out to the cinema, or for a pizza. Eventually we were referred to the social care department of our local authority, as a priority for support. Despite this, the council refused to fund any respite care and so began a long battle.

Six years later, for the first time local authorities were placed under a specific legal duty to provide short breaks for carers of disabled children. I didn’t know then that the law had changed. But looking back, I realise that we had stopped hitting a brick wall in our efforts to get respite and had started pushing at an open door.

The origins of the new law lay in campaigning by disability charities such as Mencap which led to parliamentary hearings, where parents, government ministers and other officials gave evidence. This was later followed by research commissioned by the Every Disabled Child Matters Campaign (EDCM) and the Department for Education (DfE). The research project “Aiming High” took place in two stages, starting in 2009 and ending in 2011. In this way, the families which were involved could be followed over time. The results showed that it was cheaper to provide short breaks to families who needed it, before they became so exhausted that they were incapable of looking after their children at all.

Now, headed by Professor Richard Hastings, The Cerebra Family Research Group based at CEDAR, a research centre at The University of Warwick and the research charity Cerebra, needs 1000 families of children with a learning disability to volunteer for another study over time. They want to look at the wellbeing of families who have children with a learning disability; not just mothers, but fathers and siblings as well. The study will further the understanding of what it is like to raise a child with a learning disability in the UK and will help to shape future support for families and children.

If your child is between 4 and 15 years, 11 months old and has learning disabilities (including children with autism or any one of a number of genetic syndromes as well) please consider taking part. It could make a real difference.

To find out more about the study and to complete the online survey please visit the website. If you have any questions please contact the research team by email: familyresearch@warwick.ac.uk or call 02476 524 139.

©Jane Raca 2016, writing as a parent contributor for the Family Research Ambassadors Project run by the Centre for Education, Development and Research (CEDAR), at the University of Warwick and Cerebra.

Professor Richard Hastings

Richard%20HastingsParents’ and service users’ experiences of challenging behaviour services

Affiliation: Centre for Educational Development, Appraisal and Research (CEDAR), University of Warwick

Biography: Richard Hastings is Professor of Psychology and Education and Cerebra Chair of Family Research in CEDAR at the University of Warwick. He carries out research on various topics in the field of learning disability and autism, including: psychological problems in children and adults with autism or learning disability, families, and educational interventions. Richard is a trustee for Mencap, the research advisor for Sibs (the UK charity for siblings of children with disabilities), and an external advisor for Ambitious about Autism.

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