Education and Young People with Sickle Cell Disease
Article part 3 of 3
The project is funded by the UK Economic and Social Research Council (Project Number RES-000-23-1486) and has looked at the educational needs and experiences of young people with sickle cell disorders. The group of academics carrying out the study are led by Professor Simon Dyson at De Montfort University, Leicester. One important part of our research into the experiences of young people with sickle cell in schools was the tape-recorded interviews we conducted with forty students living with sickle cell. What became apparent in listening to their views was the ongoing struggle they faced in making the most of their time at school, when this was sometimes compromised by school absences through illness.
Self-Care and Schooling Don’t Mix?
One of the things that parents hope for is that the young person pays attention to the advice of their doctor, and that they will develop a strong sense of what they need to do to look after their own health. This not only involves attending their medical clinic regularly. It means drinking plenty of water to remain well-hydrated and going to the toilet frequently. It means taking moderate but not strenuous exercise. It means resting when tired, and being aware of the dangers of becoming too hot or too cold.
However, being at school requires pupils to comply with certain routines, and this is where teachers begin to misunderstand the world of the young person with sickle cell. Pupils are expected not to disrupt classes with requests for water or toilet breaks; to follow rules in school uniform and in being outside during break-times; to push themselves to the limit in PE; to attend school regularly; to concentrate and “sit up straight” in class and to achieve consistently.
But according to the young people we spoke to the ideals of self-care were given short shrift in the classroom. Teachers were consistently reported not to listen to the young person with sickle cell. Rather than recognise the truth of what children were claiming, they used their position of authority to impose other interpretations on the child’s behaviour, such mistaking a child for being lazy when they were tired from their anaemia. What we have failed to recognize before this research is just to what extent the demands of school routines are at odds with the expectations, of doctors and parents alike, of what a young person can and should be doing to look after themselves.
Tell People: It Will Make things Better?
Over the years, it has become an accepted part of sickle cell wisdom: tell teachers and other pupils about your sickle cell and then they will understand and things will be better for you. But is this true?
Contrary to popular belief, our research found that the key strategy, that of providing information that they have sickle cell, to teachers and pupils, works partially, inconsistently, or even worsens the school experience. In a sample of 569 young people with sickle cell, those who reported they had told teachers or other pupils about their sickle cell were no more or less likely than those who had kept the information to themselves to be treated well. Faced with such uncertainty, young people were then anxious about the pros and cons of telling others about their sickle cell. Yes, it was possible that, by telling, other people would understand and make appropriate allowances, help them when ill and stand up for them if others did not understand. But an equal number of young people with sickle cell told us that telling others made them vulnerable: to being taunted and bullied, to being constantly asked questions, to having teachers constantly ask if they were all right in ways that made them feel not normal.
Mother and Schools
The young people with sickle cell told us that mothers were a key resource for them in schools: they informed schools that their child has sickle cell, and about the precautions the school needed to take. They pressed for homework to be sent home when the child was off from school. They arranged for a sickle cell nurse specialist to visit the school when the teachers did not believe or act on her advice. They paid for supplementary schooling when they felt the main school was not helping the young person with sickle cell that missed school to catch up. In doing all this, and in pressing for the best care of their child, they risked being labelled as pushy or aggressive or even dysfunctional by the schools
A few instances of good practice in supporting young people in schools were reported. One school devised special card for to permit toilet privileges; another operated a learning advice centre in twilight hours to enable all children who had missed lessons to catch up in the presence of a teacher; yet another changed school policy to allow all young people to wear long trousers rather than shorts; another timetabled the class with the young person with SCD away from classrooms known to be cold. But invariably these were policies enacted in isolation and there was little sense that all such initiatives were required simultaneously. The next stage of our work is to try to win a grant that would enable us to work on developing such policies for all schools attended by a young person with sickle cell.
This material has been published in two academic articles as follows:
Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; and Evans, H (2011) Sickle cell, habitual dyspositions and fragile dispositions: young people with sickle cell at school Sociology of Health and Illness (forthcoming)
Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; Evans, H and Rowley, DT (2010) Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school Social Science and Medicine 70 (12) 2036-2044. [ISSN: 0277-9536] http://dx.doi.org/10.1016/j.socscimed.2010.03.010
Article by Professor Simon Dyson,
Unit for the Social Study of Thalassaemia and Sickle Cell Anaemia, De Montfort University, Leicester UK