Tag Archives: 1000 Families study

How behaviour problems can affect family life

Jane Raca, whose son James has learning disabilities, autism and challenging behaviour shares her story and explains how you can get involved in research that will help other families.

“When James was little he used to pinch me if he was cross. He couldn’t walk or talk, so his means of communication were limited. The pinching didn’t hurt too much and he developed a graduated system of pinches which even made me rather proud! If he wanted my attention and I was preoccupied, he would pinch lightly. If he was getting agitated and wanted to leave a noisy place, the pressure would increase until I got the message.

As he grew older and stronger, the squeezing inevitably inflicted more damage. I once got him stuck in a doorway in his electric wheelchair and ended up with a black bruise the size of a saucer under my arm. Despite this, I was surprised when one of his social workers confessed to me that she was afraid of him. It had not occurred to me to be frightened. He was my son and I loved him; I knew he wasn’t being malicious. If you can’t walk or talk and you get overwhelmed by crowds, or the tiniest change in routine, there are only so many ways you can say so.

The social worker’s comments made me think though and I realised that although I wasn’t scared, I was on a constant state of high alert, trying to avoid an outburst. I was also worried about James’s brother and sister and felt I had to protect them from him. It wasn’t much fun for them getting into the car with someone who might attack them, or going to the cinema with someone who might bite them if he got anxious. They started refusing to go anywhere with James and becoming quiet and withdrawn.

I wasn’t getting much sleep and the psychological strain of managing James’s moods on a minute by minute basis contributed to my emotional exhaustion. Eventually I had a nervous breakdown. As I was the main carer of James and his two siblings, this had a profound impact on the family. My husband was alarmed at the fact that I seemed to need to sleep for 20 hours out of every 24, and he had to hold the fort at home as well as work. Our marriage was under severe strain. My mother travelled miles to support us every weekend.

What I didn’t know at that time was that what was happening to my family was not unusual. There is now a much greater awareness of the potential challenges of having an autistic child. However, the resources available to help are still woefully inadequate. Now there is an opportunity to improve that. The National Institute for Health and Care Excellence ‘NICE’ has identified that behaviour that challenges is common in children with a learning disability and can have a considerable impact on them and their family members or carers.

For example it is a common reason for residential placements with associated high costs. NICE has recommended that research be carried out into preventing behaviour that challenges from developing in young children with a learning disability. This is important because NICE is an independent body set up to advise the NHS among others. Its role includes providing strong, research based evidence which has the power to persuade governments to formulate or change policy.

Now, The Cerebra Family Research Group based at CEDAR, a research centre headed by Professor Richard Hastings at The University of Warwick, is calling for 1000 families of children with a learning disability to volunteer to take part in a study over time. The study will look at the well-being of family members where a child has 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 may ultimately lead to greater resources being available for families like ours.

Professor Hastings, who is also Chair of Family Research for the charity Cerebra, says that many studies show that mothers of children with learning disabilities and autism experience more stress from their children’s behaviour problems compared to other children. He says that fathers and siblings also report more psychological problems when a child with learning disabilities or autism has significant behaviour problems. This doesn’t surprise me at all.

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 telephone: 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.

Why we need more fathers to take part in research

Rob and Poppy 2Mikeda Jess from The Cerebra Family Research Group at the University of Warwick explains why they need more fathers to take part in research.

“Research with families of children with disabilities contributes to a greater understanding of their experiences and the factors that have an impact upon their lives. Traditionally, when researchers make a call for families to take part in research it is often mothers that respond, completing surveys and answering questions about their child and family life.

Even in modern times, it is mothers who often assume the primary care-giving role and so they are well placed to speak on behalf of their family. Mothers are usually a fountain of knowledge regarding their child’s strengths, difficulties, and daily challenges and can talk about their family as a whole too. Mothers have made a major contribution to research and to our understanding of families of children with disabilities. Thank you!

Although sometimes they are, mothers are not usually the only members of a family living with a child with disability. There are often other children (siblings), another parent (perhaps a father), and extended family members (such as grandparents, step-parents, or aunts and uncles). In this article, our focus is on fathers.

Fathers often play a significant and distinct role in the lives of their children, but theirs is a significant voice often missing from family research. What this means is that we actually know very little about fathers’ perspectives and whether their experiences are similar to or different from those of mothers.

What do we know from research so far about fathers and mothers and whether they have similar or different experiences? Researchers that have included fathers have found (unsurprisingly) that they are different to mothers. For example, fathers tend to report fewer problems in relation to their psychological well-being than do mothers in families of children with disabilities. Fathers report less stress, depression and anxiety.

Why might fathers of children with disabilities report fewer psychological difficulties than mothers even within the same family? One answer is that across the whole population men/fathers tend to report fewer psychological difficulties than do women/mothers. Although this reminds us that families of children with disabilities are in many ways just like other families, it actually doesn’t explain why this difference is there.

There may be some additional clues in research with families of children with disabilities about why fathers report fewer psychological difficulties than mothers. For example, many mothers give up paid work to care for their child with disability whereas many fathers stay in work. Perhaps fathers have the advantage of more social contact with work colleagues and the benefit of a role outside of the home that gives them an additional sense of worth? In addition, mothers typically (though not always) perform most of the care-giving tasks for their child with disability. Thus, the strain of this work and perhaps the difficulties of dealing with (for example) any significant child behaviour problems, probably falls more onto mothers than fathers.

In the research of the Cerebra Family Research Group at the University of Warwick, we have also looked at families from a systems perspective. This means that we are interested in how the different members of a family affect each other. From this perspective, it is not just the child with disability that might have an impact on other family members, but family members may affect the well-being of the child with disability and impact on each other too. For example, in some research studies of families of children with autism we have found that fathers’ psychological well-being was more closely associated with the mother’s depression than it was with their child with autism’s behaviour problems. In contrast, mothers’ well-being was associated with both the father’s depression and their child’s behaviour problems. Again, this shows that fathers’ experiences can be quite different to those of mothers in families of children with disabilities.

Differences between mothers and fathers are evident, but our knowledge on why exactly that is remains limited. It is clearly very important that fathers get more involved in research. First, the voice of fathers is valid but often missing. Fathers offer an insight into their family life that is equal, but different, to other members of their family. Second, as researchers we are just as interested in the well-being and experiences of fathers as we are in the well-being and experiences of mothers. We want to know how best to support the men too!

Recently, we have launched the Cerebra 1,000 Families Study. We want to hear about the experiences of families raising a child with learning (intellectual) disabilities including children who also have autism. For the reasons outlined in this article, we are very keen to hear from two adults from the same family, ideally a mother and a father. People having an additional parental caregiving role in families (apart from the mother that is) are not always fathers and so grandparents, step-parents and adult are also welcome to participate in our study. Our aim is to collect information from 1,000 families. So far we’ve had a great response so a big thank you to all who have taken part.

We need to hear from fathers too and from more families! If you have already taken part and you have a partner or any other family member who helps you take care of your child please do encourage them to take part in the study. You can find the survey online or alternatively request a paper copy. Follow us on Twitter and become our friend on Facebook.

Get involved in making this the largest UK study ever of families raising a child with a learning disability so that there is a better understanding of families like yours.”

Find out more about the project here

Knowsley Family Forum – Rare Genetic Conditions

Little girl with Angelman's SyndromeWe recently held our first Cerebra Family Forum in Knowsley in the north west. We had three informative speakers for this event, providing information on rare genetic conditions and current research projects.

Unique is a charity that supports families of children with rare genetic conditions. Dr Beverly, Searle, their CEO explained how rare chromosome disorders occur and gave an insight and update on current research projects. Beverly also provided information on their and services and publications. Her presentation can be downloaded below.

Elizabeth Halstead, Lead Research Officer for Cerebra, provided an overview of Cerebra’s Research projects and the launch of a new 1,000 families study for parents and carers of children with learning disabilities. This new study aims to provide the largest UK database for information which is essential for future research in this area. Elizabeth’s presentation can be downloaded below.

Dr Caroline Richards, Research Fellow at Cerebra’s Centre for Neurodevelopmental Disorders at Birmingham University, provided an overview of their work, which includes research with families of children with rare genetic conditions. Caroline’s presentation focused on research on sleep and challenging behaviour often prevalent in children with rare genetic conditions.

Fifty two people attended the event and the feedback was fantastic with lots of positive comments about the quality of the presentations and information available. Lots of parents and carers commented they were unaware just how much research is ongoing and many felt it was great to have an event dedicated to rare genetic conditions.

Download Unique Presentation pdf

Download 1000 Families Study Presentation pdf

Visit our research pages to find out more about the exciting research funded by Cerebra at universities across the UK and in Barcelona.

The Cerebra Family Research Group

torheadlineThe Cerebra 1000 families study will look at the experiences of families as they bring up a child with a learning disability and/or autism.

There is probably only one question in the field of intellectual disability (ID) and autism family research that has been answered pretty much beyond doubt.  Parents, especially mothers, raising children with ID or autism report more stress and mental health difficulties than other parents.

We wanted to explore this further and in January 2014 Prof Richard Hastings, based at Warwick University, was awarded research funding from Cerebra to carry out the first large scale and long term study to identify and understand family stress, its causes, strategies for coping adopted by families and the outcomes for all family members.

The Cerebra 1,000 families study will follow 1,000 families over a five year period.  Children between the ages of 4 and 11 years with an intellectual disability or autism will be recruited into the study shortly.  Data will be collected from both parents (primary and secondary parental caregivers) where there is more than one parent in the household, and from one parent only in single parent households.

Data collected will allow the researchers to address questions about parental well-being and the two way relationship between a child’s behaviour and parental well-being; why some parents report significant psychological stress and others do not (psychological variables and socio-economic variables); and how parents and children are affected by the transition from primary to secondary school.  In addition the study will focus on fathers of children with intellectual disability or autism and their psychological well-being over time and the positive and negative outcomes for siblings.

Cerebra is also planning a conference with the University of Warwick focussing on Mental Health in Children with Learning Disability and/or Autism.

When? – 4th June 2015

Where? – The Welcome Centre, Coventry

Who is it for? The conference aims to bring together researchers, practitioners, educators and organisations working with children with Learning disabilities and/or autism in the West Midlands. Parents and carers are also welcome.

What is it about? The conference provides an opportunity for sharing research information relating to mental health in children with learning disabilities and/or autism, understanding national developments as well as discussing the implications of Education, Health and Care Plans (EHCs).

Keep a look out for more information about the conference and how to book in upcoming newsletters!