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

We are grateful to all the young people and their families for their time in replying to the questionnaires and the interviews. We would like to acknowledge the work of the Sickle Cell and Education group (SCED) in helping with the survey, including David Rees, Moira Dick, Susan Height, Sandra O’Driscoll, Shirley Samuel, Baba Inusa, Jo Howard, Helen Appleby, Neil Westerdale, Lola Oni, Elizabeth Okuyiga, Vesna Graham, Beatrice Barbola, Gavin Cho, Michele Afif, Lurieteen Miller, Susan Crawford, Maureen Williams, Janet Lawrence, Paulette Gaskin, Wendy Mills, Sekai Tangay, Bernice Burton, Comfort Okolo, Evelyn Chibambo, Beverley Smalling, Anthony Akhidenor, Mary Opare-Ababio, Joanne McLoughlin, Iyamide Thomas, Comfort Ndive, Blanche McCalla, Anthony Mason, Carol Nwosu, Cecilia Shoetan, Tito Idowu, Eileen Bowen, Susan Mew, Beverley Bell-Jessop, Maureen Scarlet, Monica Noel, Carol King, Winston Nurse, Melita Dixon, Angela Dias, Sonia Lindsay, Sharon Wilson, Anndeloris Chacon, and Marjorie Ritchie.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.Funded by the Economic and Social Research Council (Grant RES-000-23-1486)