De Montfort University, Leicester, UK.
University of York, York, UK.
Soc Sci Med. 2010 Jun;70(12):2036-2044. doi: 10.1016/j.socscimed.2010.03.010. Epub 2010 Mar 23.
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.
镰状细胞是一种主要的遗传疾病，无论是在全球范围内还是在英国。对于患有镰状细胞的年轻人在学校的经历，研究甚少。一项混合方法研究（2007 年 5 月至 2008 年 9 月），基于对英国 569 份问卷和 40 份与患有镰状细胞紊乱症（SCD）的年轻人的录音访谈，发现患有 SCD 的学生面临着是否向教师和学生透露自己的镰状细胞情况的困境：他们症状的潜在和隐藏特征使得他们有可能（用戈夫曼的话来说）“过关”。然而，镰状细胞的多变和不可预测的病程提醒人们注意戈夫曼的“丢脸”概念。我们发现，教师或学生是否知道一个年轻人患有镰状细胞，与报告的学校对患有 SCD 的年轻人的治疗更好之间没有统计学上的关联。访谈分析表明，大多数年轻人赞成透露自己的镰状细胞状况（因为这样教师就会知道在发病期间应采取什么行动，并考虑到疾病或缺课的情况）。少数人不同意，因为他们觉得透露病情会引起不必要的关注或产生使他们丧失能力的态度。对向同龄人透露病情的态度则更加多样化：要么赞成向同龄人透露，要么反对，要么持矛盾态度，他们觉得在承认自己的镰状细胞现实和不希望它成为自己身份的核心部分之间存在紧张关系。一些健康促进建议似乎假定教师和/或同伴的意识是改善患有 SCD 的年轻人的学校体验的关键，但这一研究结果并不支持这一观点。相反，需要改变更广泛的学校环境，以便无论年轻人自己是否突出或淡化自己的残疾身份，都能得到支持。
