SPARCLE 1 investigated the influence of the environment on the participation and quality of life of children with cerebral palsy in seven EU countries. It is funded by the European Commission Research Framework 5 Programme. It started on 1st October 2002 and continued until December 2006.
SPARCLE 1 expects to determine those aspects of the environment that play a major role in determining the participation and quality of life of children with cerebral palsy. The information will be used to inform EU policies. We are interested in things such as access to buildings, schools, and friends and relationships.
Because SPARCLE 1 went well we were able to obtain funds to visit the same young people with cerebral palsy aged 13-17 years. This is called SPARCLE 2 and its main purpose is to understand the factors that promote the quality of life and participation of young people with cerebral palsy. In particular we will examine whether there are aspects of the lives of the children aged 8-12 years and their families in SPARCLE 1 which influence quality of life at age 13-17. For example, does stress in a family persist and still influence quality of life? Does pain persist and still influence quality of life?
SPARCLE 1 and 2 are co-ordinated by the study centre at Newcastle University in collaboration with six further European countries (Denmark, France, Ireland, Italy, Germany and Sweden). Children with cerebral palsy aged 8 - 12 years will participate in the study, as well as their parents.
Why children with cerebral palsy?
Cerebral palsy is the commonest cause of physical disability in childhood:-
It affects about one child in every 500
there are approximately 10,000 children newly diagnosed with cerebral palsy each year in the European Union
children and young people with cerebral palsy continue to be seriously disadvantaged in social relationships, education and job prospects.
What can we learn from other countries?
Each country has its own unique Environment to respond to children with special needs and their families. The strength of our study is that we can compare the experiences of children with cerebral palsy and their families across six European countries. This will help us to find out which parts of the environment help the most. The six countries taking part in this study are Denmark, France, Ireland, Italy, Sweden and UK. Each centre has its own team collecting the information from families.
SPARCLE is co-ordinated at Newcastle University, England.
How families can help?
We will ask children and their families throughout Europe about their views and experiences. If agreeable, they will complete a series of questionnaires: someone will always be available to help. The children will be aged 8-12 years. We have chosen this age range because we want to seek childrens views as well as those of parents. Previous studies show that the views of younger children can be unreliable. We know that some children may have problems with communication and may use an aid or communicate through other people. We are just as interested in their views and experiences. Some children will have learning difficulties, and in these cases we will ask permission to ask his/her teacher, therapist or carer to complete a questionnaire about the child.
Then in SPARCLE 2 we visit the same young people aged 13-17 years.
What will happen to the results of the study?
The findings will be presented to the European Union parliamentary members and committees to help them make policy. The EU has already helped the UK by introducing best practice from other countries in areas such as working hours, maternity leave and pay. We hope SPARCLE will do the same for regulations to ensure children with disability participate in society as much as other children. It is hoped that future generations of children with disabilities and their families will benefit. The results will also be published in scientific journals and participating families will be sent a summary of results at the end of the study.
All of the results will be on the SPARCLE website, downloadable as pdf files.
What about confidentiality?