Some European countries could make better provision for disabled children to allow them to participate in life on an equal basis with others, concludes a large study published on bmj.com.
Participation, defined as involvement in life situations, is important for all children, but little is known about it in disabled children.
So a team of researchers set out to assess variations in the nature and rates of participation of 818 children with cerebral palsy aged 8-12 years in several European countries.
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.
Participation on all domains also varied substantially between regions, with children in Denmark having much higher participation than children in other regions, after adjusting for impairment and pain.
These findings show how important it is to assess children's pain status and manage it effectively, say the authors. National policies and legislation in different countries can also have a powerful influence on the day to day lives of people with disabilities and their families, they add.
They suggest that both pain and participation of disabled children should be assessed in clinical practice to help guide intervention. They also recommend that national 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.
This study reflects modern thinking about health and function, writes Peter Rosenbaum, Professor of Paediatrics at McMaster University in Canada, in an accompanying editorial.
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.
- Fauconnier et al. Participation in life situations of 8-12 year old children with cerebral palsy. BMJ, 2009; DOI: 10.1136/bmj.b1458
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