How available to European children and young people with cerebral palsy are features of their environment that they need?

Abstract

Background: The UN Convention on the Rights of Persons with Disabilities requires accessibility to the physical and social environments. However, individuals with cerebral palsy (CP) have many difficulties in accessing the environment they need for functional independence and social inclusion.

Aims: To examine the availability of environmental features which children with CP need for optimal participation, and whether availability changed for them between ages 8-12 and 13-17 years.

Methods: The sample is the 594 children with CP, born 31/07/1991-01/04/1997, who took part in the SPARCLE study at age 8-12 (SPARCLE 1) and again at 13-17 years (SPARCLE 2). Participants were randomly sampled from population registers of children with CP in eight European regions; one further region recruited from multiple sources. Data about environment were captured with the European Child Environment Questionnaire (60 items). Differences in availability of environmental features between childhood and adolescence were assessed using McNemar's test; differences between regions were assessed by ranking regions. Differences in availability between regions were assessed by ranking regions.

Results: For seven environmental features significantly (p<0.01) fewer individuals needed the feature in SPARCLE 2 than in SPARCLE 1, whilst for two features more individuals needed the feature. Nine features in SPARCLE 1 and six features in SPARCLE 2 were available to less than half the participants who needed them. Eight features showed significantly (p<0.01) higher availability in SPARCLE 2 than in SPARCLE 1 (enlarged rooms, adapted toilet, modified kitchen and hoists at home, adapted toilets and lifts at school, an adequate vehicle, grants for home modifications) while none showed significantly lower availability. The relative rankings of the better and less good regions persisted from the age 8-12year age group to the 13-17year age group.

Conclusions: Needed environmental features are unavailable to many children at ages 8-12 and 13-17 years. This lack of availability is more pronounced in some regions than others, which probably results from their policy, legislative and statutory frameworks.

Keywords: Adolescence; Cerebral palsy; Childhood; Disability; Environmental features.

Fig. 1

Summary of the availability (number having needed feature available/Number needing feature (%)) to the ECEQ items from the 594 individuals in SPARCLE 1 (SP1) and SPARCLE 2 (SP2).