February 2002
EPICure 3 Newsletter - February 2002
Firstly, we would like to thank all of you who have taken part in this part of the study so far. We have not yet seen all the children but we hope to do so by the end of the summer term. We thought it was time to send you another newsletter to let you know how the study is progressing.
As you know, in this phase of the study the children are seen in school by a paediatrician and a psychologist. After receiving your signed consent form and school details we wrote to the headteacher of your child's school explaining about the study and asking if he/she would agree to our researchers spending a day at the school to see your child and another child who was not born prematurely. The two children are not compared as individuals but we need to see a group of non-premature children to give us the range of behaviours that might be expected. Doing the assessment with a child from the same class is the best way as children, their language, and behaviours vary somewhat across the UK (and we see children in Ireland too!)
The majority of headteachers have been very accommodating, although space is at a premium in most schools. The staff have always made the researchers welcome and have shown a lot of interest in the study. As some of you will know, some headteachers were unable to help, the main reason being lack of space within the school, and we have seen these children either at their local hospital or at home.
We appreciate that some parents were concerned about their child being singled out as being different but often this has been overcome by seeing another child at the same time and the assessment is rarely seen as an issue by the children.
All the children seem to have enjoyed taking part in the assessment and playing the games and although we have not yet analysed the results, the researchers are very impressed with how well the children are doing considering their very premature arrival.
We hope you have received your written feedback following the assessment. We have been very interested to hear from those of you who have let us know that as a result of the assessment your child
has been given extra help at school. This is very encouraging. Those parents who have not yet replied and consented to the study may be interested to hear that taking part can have some immediate benefits for their child, not only others in the future. We always provide a written feedback report.
By the end of this month, February 2002, we will have seen 152 EPICure children and 108 comparison children. So far, we have found that 16% of the EPICure children attend special schools and the rest attend mainstream schools although many of these children do need extra help at school. None of the children have developed any major disability since we saw them when they were 2½ years old but for some children other problems such as learning difficulties and behavioural problems are becoming apparent now that they are at school. These children may need extra support at school and if it is not already provided, the results of the EPICure assessment can be used to support any request for additional help at school.
The EPICure study is unique because no other study has been able to be so complete in its population (we have identified every child in the United Kingdom and Ireland, not just one small area or hospital group). Because of this the results are well respected all over the world and are quoted widely as the best study of its kind. This is due in a large part to your great help with the study.
We would also like to thank you for taking the time to complete and return the questionnaires.
We will send out another newsletter when all the children have been seen and the results analysed but please contact us on the above telephone number or email address if you have any comments - we are always interested to hear them!
ONCE AGAIN, THANK YOU FOR YOUR HELP AND CO-OPERATION
If you have not yet returned your consent form, please do so as soon as possible. We would like to see all the children before mid-July 2002.
Details of the research team are as follows:
The Research Team
Neil Marlow - Project Leader (medical)
Dieter Wolke - Project Leader (development)
Heather Palmer - Project Co-ordinator
Paediatricians
Dr Melanie Bracewell, Research Fellow (Midlands, South and Ireland)
Dr Michele Cruwys (London)
Dr Ruth MacGregor (South West)
Dr Margaret Morris (North West)
Dr Margaret Morton (London)
Dr Lesley McDonald (Scotland)
Dr Sue Thomas (North East)
Dr Orla Flanagan (now left)
Psychologists
Ms Catherine Bamford, Research Fellow (Midlands, South and Ireland)
Ms Helen Betteridge (North and Midlands)
Ms Hanne Bruhn (Scotland)
Mrs Sandra Johnson (South West)
Ms Iliana Magiati (London)
Ms Emma Luck (now left)
Ms Isabel Tsverik (now left)
Ms Maria Morahan (now left)
As you can see from the above list, there are many researchers involved all over the country. This is why some of the assessments are videoed, as we need to ensure that all researchers are doing the tests in the same way throughout the study. The assessments are administered by the researchers in the same way, regardless of whether they are assessing an EPICure child or a non-Epicure child.