Tag Archives: 1000 families

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 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.

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.