Newcastle University

That’s the finding of a large study led by Professor Allan Colver at Newcastle University which set out to assess participation in 818 children with cerebral palsy aged 8-12 years in several European countries.

Participation, defined as involvement in life situations, and meaning what children actually do and what they get involved in, is important for all children, but little is known about it in disabled children.

In the study published today on bmj.com, they found that the level at which children were able to get involved varied substantially between countries.

They describe how children with cerebral palsy participate much less than the general population; and if they have severe cerebral palsy or pain, they participate even less.

These findings show how important it is to assess children’s pain status and manage it effectively, state the authors.

They also found large differences between countries, meaning children with equivalent severity of cerebral palsy participate much better in some countries than others. Denmark turned out to be the country where children participated best but children in Northern England were not far behind (third).

Professor Colver says, “This tells us that the environment in which children live is very important and that some countries provide better environments for disabled children than others. This fits in with the idea that much can be achieved by adjusting the environment rather than through treatments and therapies which at the moment do not provide cures and may be painful, time consuming and sometimes actually interfere with the child’s opportunities to get involved and participate.”

The researchers suggest that both pain and participation of disabled children should be assessed in clinical practice to help guide intervention.

They also recommend that national policies, regulation and legislation should be directed to ensuring all countries adapt environments to optimise the participation of disabled children, building on the experience of those countries that make best provision.

Method

The children were randomly selected from population registers covering eight regions of six European countries (southeast France, southwest France, southwest Ireland, west Sweden, north England, Northern Ireland, east Denmark and central Italy). Parents and children were interviewed about their participation in 10 main areas (domains) of daily life such as mealtimes, communication, relationships, school and recreation.

Parents provided demographic information, such as type of employment, level of educational qualifications and whether the family lived in an urban or rural area. Frequency and severity of pain were assessed, and background information about each child’s impairments including movement (motor function), intellectual ability, vision, hearing and communication was also collated.

Children with pain and those with more severely impaired walking, fine motor skills, communication and intellectual abilities had significantly lower participation on most domains. Even after controlling for severity of impairment, pain was strongly associated with lower levels of participation.

In an accompanying editorial, Peter Rosenbaum, Professor of Paediatrics at McMaster University in Canada writes that this study reflects modern thinking about health and function. He suggests that our efforts in childhood disability should be to promote the acquisition and enhancement of life skills in all dimensions, to enable young disabled people to participate in both the instrumental and discretionary opportunities of their lives, as the current study has explored.

“If we can broaden our clinical thinking beyond the biomedical dimensions of diseases to include participation … we may help improve the quality of life and long term wellbeing of disabled children and young people along with their families,” he concludes.

Academic paper: Participation in life situations of 8-12 year old children with cerebral palsy: cross sectional European study
Published in: BMJ online
Editorial: Childhood disability and social policies, BMJ online