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Education for Minority Ethnic Pupils: Young People with Sickle Cell Disease

Start date: 01 September 2006

End date: 28 February 2011

Sickle cell disease (SCD) is the collective name for a number of inherited blood conditions that mainly affect people of African, Caribbean, Middle Eastern, South Asian, and Mediterranean descent. Clinical manifestations include chronic and acute pain, and strokes. The known number of children with SCD will increase from the current estimate of 5,000 over the next decade as all newborn infants and most pregnant mothers will be screened for SCD. However, the impact of sickle cell on the educational experiences of young people is an under-researched area.

This project aims to map the extent and content of educational policies on SCD at local authority and school level; to map the range and frequency of key factors reported to affect the educational experiences of those living with SCD; to describe the perceptions held by those living with SCD of their educational experiences and to develop a user-led educational policy framework for SCD. This work will be conducted by means of an internet survey of existing educational policies; a survey of local education authorities and of pupils with SCD; depth interviews with pupils with SCD and detailed case studies of pupils with SCD.