Discussion groups with parents of children with cerebral palsy in Europe designed to assist development of a relevant measure of environment

Background An instrument to measure environmental factors relevant to physically impaired children is being developed in a European context. Preliminary work in England had identified some potentially important themes. Further inquiry was needed to identify issues important in other European countries. Objective To inform the content of a questionnaire relevant to the environment of children with cerebral palsy (CP) living in Europe. Design A qualitative study using discussion groups. Participants Parents of 28 children with CP from five countries; Denmark, France, Italy, Ireland and Sweden. One discussion group was held in each country with an average of seven parents per group. Results The four themes identified in the preliminary work done in England were strongly confirmed across Europe – namely: Mobility, Transport, Support by and to parents, and Attitudes of individuals and institutions towards children. Two new themes identified in the discussion groups were Bureaucracy and Access to information about rights and entitlements. Conclusions The environmental factors that cause concern to parents of children with CP are similar across Europe. A prototype environmental questionnaire has been developed based on these findings. The environmental questionnaire is in use in a study in nine European centres.