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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.

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.

1000 Families Study – Age Range Extended

Are you the mother, father, or caregiver of a child aged between 4 and 15 years, 11 months who has a learning disability?

Our 1000 families study, carried out at the University of Warwick, is exploring the experiences of family members who live with a child with a learning disability.

The study has recently received permission from the NHS Research Ethics Committee to extend the age range. We can now include children in the study if they are between the age of 4 and 15 years and 11 months (previously 4 and 11 years and 11 months). We heard from a number of families who would have liked to take part, but were unable to because their child was between the ages of 12 and 16 years. If this is you, we’d  love to invite you to get involved.

We are really keen to survey at least one person in the family (especially, a mother and a father) to explore whether family members have similar or different experiences and capture the experience of the whole family. We want to make this the largest study ever of families of children with learning disability in the UK and help shape future information and support.

University of Warwick logoIf you are the parent/caregiver of a child with a learning disability between the age of 4 years and 15 years and 11 months and would like to take part in a large scale family research project, please follow this link to find out more and complete the online survey.

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

 

Why we need more fathers to take part in research

Mikeda 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

Managing Challenging Behaviour Factsheet

Managing challenging behaviourSome behaviours are a challenge to professionals, teachers, carers and parents. This factsheet gives information on how to manage challenging behaviour by considering five key points:

What is challenging behaviour?
Why does challenging behaviour happen?
Understanding challenging behaviour
Where do I find professional help?
What further information is available?

Download Challenging Behaviour Factsheet PDF

Published 2015. This edition 2016. Review date 2018


 

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.

Cerebra Research Presented at International USA Conference

Researcher Liz Halstead

Liz Halstead

Elizabeth Halstead, a member of Cerebra’s Research team at the University of Warwick, has been chosen to present her research findings on resilience in mothers of children with learning disabilities and autism at the Gatlinburg international conference in San Diego, California, in March 2016.

Liz explains more:

“For those of you who I haven’t been in contact with during my time at Cerebra, I am the maternity cover for the lead research officer position and based at Warwick University. For the past 4 years I have been working on my PhD at Bangor University, which is based around resilience, child behavioural problems and well-being in children with intellectual and developmental disabilities and their families  also known as The ReAL Project.

Some of you may have even participated in this research, and if so, thank you.  For my main project I did a large scale survey with over 350 mothers and fathers reporting on child behaviour, resilience and well-being.  We first looked at the mothers in the study and found that mothers who reported higher resilience had better well-being when faced with child behavioural problems.  In addition, children had better behavioural and emotional outcomes when their resilience was high.  Maternal depression was also found as a risk factor for child behavioural problems. So what does this all mean? Well it shows mothers of children with disabilities show resilience, which in this study meant:

·         Believing that positivity can come out of difficult situations

·         Creative ways can be found to alter difficult situations

·         Feeling a sense of control over your reactions

·         Being active when faced with losses encountered.

We still know very little about resilience, but this is a good start in showing some positives of having a child with a disability and we have yet to look at the fathers who participated in the study. I know a common question I get asked is what do I do now with these results we have? Well, the next steps are to tell other researchers what was found, tell parents and charities and to source more funding to continue developing this research which will hopefully lead to a useful intervention.  We want to make professionals and practitioners aware of the resilience of mothers, and what this means so this can be used in practice when working with families.

I applied to present this section of my research at this prestigious international conference in San Diego. This will have top academics and practitioners in learning disability and autism research present.  I am pleased to say my research was accepted and was also awarded the dissertation travel award.  This is the first step in getting our research out there.  In addition to myself, two of Cerebra’s academic chairs will be attending – Richard Hastings from Warwick and Chris Oliver from Birmingham. Some of Chris’s team in Birmingham, along with Chris, will also be presenting research they have done in Birmingham.

Research is a long process with many stages along the way, however we do our best to get it out there so the research you participate in leads to positive future projects and outcomes”.

Prof. Richard Hastings: My Journey into Research

Professor Richard Hastings

Professor Richard Hastings

Professor 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 currently leading the Cerebra 1,000 Families Study.

In this article he explains the reasons why he became involved in research and why his work is so relevant to the lives of children and adults with disabilities and their families and carers.

“I’m often asked how I got ‘into’ research in the field of learning disability/autism and especially why I have an interest in research about understanding and supporting families of children with these disabilities. I always reply with a story that emphasises serendipity (a great word!), or chance.

I do not have close family members with learning disability, unlike many researchers I have met. My story starts when I was at University. I studied Psychology as an undergraduate because it looked like it would be interesting. Like many Psychology students, I thought I would like to become a Clinical Psychologist. So, in the summer of my second year I wrote to heads of clinical psychology services in areas near to my family home asking if they might have suitable work for me to do. Of course, no-one replied except for one psychologist who said that they were opening a “Locally Based Hospital Unit” for people with learning disability (“mental handicap” at the time) who were moving out of a long stay hospital (this was 1989). I was offered a summer job supporting the assistant psychologist and clinical psychologist working in this new unit.

I had never knowingly met someone with a learning disability before and had no idea what to expect. I was anxious on meeting people, and also frightened as it turned out the people living in the unit had significant levels of challenging behaviour. I was bitten, punched, kicked, and scratched regularly during that summer. At the same time, I enjoyed being with the people with learning disability. This was my first experience of the challenges and also the positives of being with people with a learning disability. I also experienced (looking back) some work-related burnout: feeling emotionally drained, but also being quite negative about people I was meant to be caring for and about their behaviour. I was very young and not prepared for this, and at that time there was no preparation and training to help me understand my role better.

For my final year undergraduate dissertation, I wrote a thesis on understanding self-injurious behaviour and decided to study for a PhD in learning disability focused on support staff working with people with challenging behaviour. I wanted to understand a little of my own personal experience, but especially how support staff thought and felt about challenging behaviour and how this might influence the way that they responded to challenging behaviour.

I enjoyed research so much that I stayed on in the academic world rather than ever pursuing further training to be a clinical psychologist. In carrying out research focused on support staff, it became apparent quite quickly that some staff experienced significant stress when working with people with challenging behaviour but other staff did not and seemed to cope much better. I realised that family carers must face some of the same challenges as support staff would, but that also there would very likely be some differences. This started my interest in family research – beginning with the impact of challenging behaviours on family members’ psychological well-being and how parents in particular coped with these challenges. Although my interest in family research started with that focus on challenging behaviour, I quickly became interested much more broadly in understanding families’ experiences of raising children (and adults) with learning disability.

In both the support staff research and learning disability family research, I noticed three general issues that have then gone on to inform much of the current research that we do. First, working with or being a family member of a child or adult with a learning disability comes with potential challenges and stress and it is important to recognise that and to devise ways to offer support to carers. However, researchers and professionals often get fixated on the difficulties and forget the positive side of working with a caring for people with a learning disability. Much of our current research is focused on positive experiences of paid and family carers, and the recognition that we can experience both negative (e.g., stress) and positive (e.g., joy) things in life at the same time.

The second general issue I noticed and that has informed research is that researchers and professionals again all too readily forget that people with a learning disability are likely to be affected by the well-being of those around them (family and paid staff). It is too often the case that we look at how the person with learning disability (and especially their challenging behaviour) affects their carers. In reality, we are dealing with a system here: people with a learning disability do pose some challenges for their carers as do the stresses of dealing with the (lack of) support from services for the person with learning disability, but equally how carers are doing affects the well-being and development of children and adults with a learning disability. We are now studying these two-way influences especially in our family research.

The third and final general point informing our current research is the lack of the representation of the views and experiences of children and adults with a learning disability in research. So, we know very little about (in research terms) how people with a learning disability understand and think about their family or perceive their relationships with paid carers. Again, this is something we are exploring in our current research.

I hope from this short article that it is possible to see how research and researchers can make a contribution to the lives of children and adults with disabilities and their families and carers. Sometimes researchers ask the questions that no-one is asking, or look at things in a way that challenges some of our assumptions. The latter is illustrate perhaps most clearly by our research looking at the positive aspects of caring for someone with a learning disability. I also hope that it is helpful to see how families and people with a learning disability themselves influence the research agenda. It is worth interacting with researchers since really interesting ideas can emerge from these interactions. My experience being a paid carer in learning disability services has continued to shape the research questions I ask, and many of our best ideas for new research come from talking with family members and people with disabilities. It is my strong belief that children and adults with a learning disability deserve the highest quality research to inform how society should be supporting them in their lives, and this is best achieved by researchers, family members, and people with disabilities talking together”.

You can get involved in the Cerebra 1000 Families Study here.

 

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.