Looking specifically at children with four-limb cerebral palsy and limited or no functional speech, this study aims to ascertain from parents/carers of these children, as well as teaching and therapy staff, opinions as to the child's needs regarding information about their diagnosis and prognosis. It also aims to elicit their views about potential resources to address these needs.
Up to 14 participants will complete a semi-structured interview eliciting qualitative data. Interviews will be tape-recorded, transcribed and the data analysed using a grounded theory approach which groups data into themes reflecting participants' opinions, thoughts and feelings.
Based on over half of the data, a number of themes have begun to emerge. At the forefront is that, for many, there is difficulty finding useful resources to facilitate an appropriate discussion. Consequently, the children's condition has never been directly addressed and their understanding is presumed to be limited. Regarding a potential resource, common themes appear to be something in storybook format, with explanations of the causes and future prospects. Emotive issues and taking a positive stance to the resource were also considered. Other themes include a resource which could facilitate asking/answering questions and could be adapted for use with communication aids.
It is envisaged that this study will serve as the foundation for developing a resource for children with CP; to enhance their understanding of their condition and facilitate participation.