School ethos and variation in health experience of young people with sickle cell disorder at school

Young people with the serious chronic illness, such as sickle cell disorder, report high levels of negative experiences at school that have adverse effects on their health. Disclosure of sickle cell status appears unrelated to improved experiences, and alternative explanations for variable health experiences at school are required. This paper draws on a multi-methods study of young people with sickle cell disorder in England in an attempt to make sense of variable experiences unrelated to disease severity or to teacher/peer awareness of sickle cell. School ethos, the manner in which school-based interactions combine to bring into effect school values, including attitudes expected of young people, attitudes expected of teachers, how young people relate to each other, how young people relate to staff, how the school relates to the community and a holistic concern with the spiritual, moral, cultural and social development of the young person. It is proposed that these interactions and resulting values are a key to understanding variable health experiences of young people with sickle cell disorder at school.