Transport mobility for children and adolescents with cerebral palsy (CP)

Sammanfattning: Background: The transport mobility of children and adolescents with cerebral palsy (CP) is of vital interest for the individual, as well as for society. Enhanced transport mobility can be related to improved functional health status and a higher degree of autonomy, which in turn may reduce the demand for societal support. UN Resolution 48/96, together with Swedish legislation and "Vision Zero" have in different ways established that the transport system must be designed to meet also the needs of children and adolescents with disabilities. Hence, it is necessary to identify and eliminate obstacles hindering children and adolescents with CP from using public transport and other means of transport, such as their own cars, at the same level as other members of society. However, in the case of children and adolescents with CP, the transport situation and the learner driver's educational situation have so far been largely unknown.Aim: The general aim of the thesis was to describe and analyse, from a legislative and a public health perspective, the transport mobility situation for children and adolescents with CP. Furthermore, the general aim was to identify obstacles for the target group to use public transport and other means of transportation, at the same level as other members of the society, and to suggest improvements that will remove the identified obstacles.Material and methods: Several different data collection methods were used. Data, concerning travel habits and parents' perceived risks regarding transportation, were taken from a postal questionnaire addressed to parents of children and adolescents with CP. In order to estimate the numbers of potential learner drivers with CP in each age group in Sweden, a literature review was conducted, based on Swedish material. Furthermore, logbooks for learner drivers with CP were analysed retrospectively, in order to identify procedures, problems and key tasks in their driver education. Visual search strategies for learner drivers with CP were analysed, utilizing an eye tracker, and an attempt was made to introduce a screening tool for predicting the outcome of driver education.Results: Children and adolescents with CP were found to be transported under unsafe conditions, causing worry among their parents. When transporting children in the family vehicle, the parents were exposed to a very heavy burden, which increased their worry. The prevalence of potential learner drivers with CP who were in need of highly specialised driver education, including individually adapted driver training vehicles, was estimated to be 0.15 per 1,000 of a population-based age group of learner drivers in Sweden. Complex procedures, structural problems and financial obstacles made it difficult for adolescents with CP to obtain a driving licence and an adapted vehicle. The total duration of the driving tuition given by a driving instructor was found to be almost nine times higher for learner drivers with CP than for non-disabled learner drivers. Visual search strategies among learner drivers with CP were found to be less flexible than among other learner drivers. This fact indicated a need for better methods of teaching such strategies to this group as an integral component of their driver education. The validity of the motor-free visual perceptual test, TVPS-UL, for predicting the outcome of driver education for learner drivers, was found to be low. In order to find a reliable and valid screening tool for this purpose, future studies should focus on cross-validation of visual perceptual and dual task performance tests for different types of independent variables, such as obtaining a driving licence or not, accident involvement and driving ability.Conclusion: The transport system was found, from a legislative and public health perspective, to be unsuitable to meet the needs of children and adolescents with CP. Suggestions for improving transport mobility for children and adolescents with CP are provided. Several of these suggestions are practical, concrete and contextual for Swedish conditions, and some of them necessitate future research. However, a number of these suggestions are also applicable in an international context.