Access of children with cerebral palsy to the physical, social and attitudinal environment they need: a cross-sectional European study

Abstract

Purpose. The UN Convention on the Rights of Persons with Disabilities requires states ‘to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, transportation, information and communications.’ We explored whether this convention was respected for disabled children in Europe.

Method. One thousand one-hundred and seventy-four children aged 8–12 years were randomly selected from population-based registers of children with cerebral palsy in eight European regions. 743 children joined the study; one further region recruited 75 children from multiple sources. Researchers visited these 818 children and administered the European Child Environment Questionnaire, which records parents' perceptions of availability of the physical, social and attitudinal environment needed in home, school and community. Multilevel, multivariable regression related child access on these domains to their impairments and socio-demographic characteristics.

Results. Children with more impaired walking ability had less access to the physical environment, transport and social support they needed than other children. They also experienced less favourable attitudes from family and friends. However, attitudes of teachers and therapists were similar for children with all levels of impairment. The access of children, across all impairment severities, to their needed environment showed significant variation between regions (p ≤ 0.0001), some regions consistently providing better access on most or all domains.

Conclusion. European states need to substantially improve environmental access for disabled children in order to meet their obligations under UN Conventions. In some regions, many environmental factors should and realistically could be changed. Legislation and regulation should be directed to making this happen. Local environmental planners and health and social service providers should listen carefully to parents to address mismatches between policy intentions and parental experience.

Keywords:

• Cerebral palsy
• environment
• children

Acknowledgements

The authors are grateful to the families who participated in SPARCLE and to the study research associates – Kerry Anderson, Barbara Caravale, Malin Carlsson, Eva Lise Eriksen, Delphine Fenieys, Bettina Gehring, Louise Gibson, Heidi Kiecksee, Ann Madden and Ondine Pez – for their enthusiasm and dedication to contacting families and collecting high quality data. The study was funded by the European Union Research Framework 5 Programme – Grant number QLG5-CT-2002-00636. The German region joined later, funded by Bundesministerium für Gesundheit/German Ministry of Health (GRR-58640-2/14) and Stiftung für das Behinderte Kind/Foundation for the Disabled Child. The funders had no role in the study design; collection, analysis and interpretation of data; writing of the report or decision to submit for publication.