Education for children with a poor prognosis: reflections on parental wishes and on an appropriate curriculum

This paper examines the wishes expressed by parents in relation to the education of their children who are in the advanced stages of a life-threatening condition. They hope that through participating in education, their children will achieve success or fulfill their potential, experience peer friendship or, at least, companionship, have interests and activities which may distract them from the unpleasant aspects of their condition, leave behind a marker of their existence and above all, experience some aspects of a normal life. The curricular models available upon which education programmes for these children may be based are examined critically in relation to all children's entitlement to an 'appropriate curriculum'. Factors which may impede teachers' willingness and ability to address the educational and other needs of their dying pupils are explored and some positive ways forward are suggested.