Sickle cell, habitual dys-positions and fragile dispositions: young people with sickle cell at school.

The experiences of young people living with a sickle cell disorder in schools in England are reported through a thematic analysis of forty interviews, using Bourdieu's notions of field, capital and habitus. Young people with sickle cell are found to be habitually dys-positioned between the demands of the clinic for health maintenance through self-care and the field of the school, with its emphases on routines, consistent attendance and contextual demands for active and passive pupil behaviour. The tactics or dispositions that young people living with sickle cell can then employ, during strategy and struggle at school, are therefore fragile: they work only contingently, transiently or have the unintended consequences of displacing other valued social relations. The dispositions of the young people with sickle cell are framed by other social struggles: innovations in school procedures merely address aspects of sickle cell in isolation and are not consolidated into comprehensive policies; mothers inform, liaise, negotiate and advocate in support of a child with sickle cell but with limited success. Reactions of teachers and peers to sickle cell have the enduring potential to drain the somatic, cultural and social capital of young people living with sickle cell.

Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school.

Sickle cell is a leading genetic condition, both globally and in England. Little research has been conducted into the experiences of young people with sickle cell at school. A mixed methods study (May 2007-September 2008) based on 569 questionnaires and 40 taped interviews with young people living with sickle cell disorder (SCD) in England found that students with SCD are faced with a dilemma as to whether or not to disclose their sickle cell to teachers and pupils: the latent and hidden characteristics of their symptoms make it possible, in Goffmanesque terms, to "pass". However the variable and unpredictable course of sickle cell is a reminder of Goffman's notion of being "discreditable". We found that teacher or pupil knowledge that a young person has sickle cell is not statistically associated with reported better treatment of young people with SCD at school. Analysis of interviews suggests most young people favour disclosing their sickle cell status (on the basis that teachers will then know what actions to take in the face of bouts of illness and in terms of making allowances for illness or school absences). A minority disagreed because disclosure was felt to attract unwarranted attention or disabling attitudes. Attitudes to disclosing to peers were more varied: either for or against disclosure to peers, or ambivalent in that they felt a tension between acknowledging the reality of their sickle cell, and not wanting it to be a central part of their identity. Some health promotion advice appears to assume that teacher and/or peer awareness is the key to improving school experience for young people with SCD, but this is not borne out by this study. Rather a change in wider school environments is required such that young people with SCD are supported irrespective of whether they themselves foreground or play down their disabled identity.

British South Asian communities and infertility services.

This paper presents key findings from the first major study of the provision of infertility services to South Asian communities in the UK. The research aimed to explore the social meanings of infertility and to examine the experiences of couples receiving fertility treatment. Focus groups with people from Pakistani, Bangladeshi and Indian communities (n = 93) revealed a strongly pro-natalist ideology and a relatively limited knowledge of infertility and treatments. Interviews with 50 participants from the same communities revealed a general satisfaction with secondary level infertility services. However, a minority felt inadequately informed about their condition, tests undertaken and treatment options; only one-third were given any written information about treatment; many were concerned about delays and waiting times; a minority felt that staff could be more sympathetic in their response to 'failed' treatment and several couples suggested that additional emotional support would be helpful. No information or resources were available in any South Asian language and the arrangements for communication support for non-English speakers were generally less than adequate. There was little evidence of the use of data on ethnic or religious background in infertility clinics. Recommendations for policy and practice are proposed.