Sickle Cell Open Education

Education and Young People with Sickle Cell Anaemia
Article part 2 of 3

This social science research project, running between 2006 and 2011, has been funded by the UK Economic and Social Research Council (Project Number RES-000-23-1486). The project 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. By the end of July 2008 we had collected questionnaires from 569 young people (aged 5-25 years old) with a sickle cell disorder (SCD).

In the survey, the children with SCD told us that they missed an average of just over 16 days of school a year because of illness associated with their sickle cell. Schools have a duty to make alternative provision in instances where a child is absent from school for 15 days or more. However, this is 15 consecutive days. The most common pattern of school absence for the children in our survey was 2-3 days at a time. Hence pupils with SCD are missing a large proportion of their schooling, but because the absences are in short episodes this never triggers the legal obligation on the school to provide extra support. As a result a great deal depends on the arrangements made (if any) by the individual school. It also sometimes depends on the tenacity of the mother or the child in asking for homework to be sent home.

The survey found that whether or not the young people felt they were helped to catch up varied greatly, with only around 1 in 20 reporting that they had been helped to catch up all the learning they had missed, but 1 in 5 stating that they did not think they had been helped to catch up any of the school absences associated with their illness. Over 80% felt they had been helped to catch up half-way or less. The written comments the young people made suggested that even sending work home did not really help as they required a teacher to explain the notes, which were not self-evident. One example of good practice was where a school instituted a “twilight” session after each school day where any child who had missed lessons through illness could catch up under the supervision of a teacher. This helped all children who missed school because of illness, not just those with sickle cell and so did not draw attention to children with SCD in ways that made them feel different from others, something the young people with sickle cell said was very important to them.

There is a great deal that can be done to help prevent children with sickle cell experiencing the more severe effects of their sickle cell (see Table 1). We know that drinking water and avoiding the most strenuous forms of exercise can help prevent crises. However, nearly half of the children questioned said they had at some point been prevented from drinking water in class and over a third that they had been made to take unsuitable exercise. Children with sickle cell cannot concentrate urine as readily as so need to pass urine more frequently, but 57% said they had been prevented from going to the toilet during lessons. One mother told us she had to threaten to send the cleaning bill to the school before they took appropriate steps to permit this. Children with sickle cell anaemia are often tired from their anaemia, but over a third stated that they had been called “lazy” at school. One young woman said that it was important that teachers responded to her participation in class, such as putting her hand up to answer questions, because at other times she would be too tired to engage in the lesson.

In the survey, we also asked about was what factors had triggered a sickle cell crisis when at school (see Table 2). There is guidance from the Department of Children, Families and Schools on managing children with medical conditions in schools. But this guidance does not explicitly state that the physical and social environment of the school should be audited to prevent things likely to trigger episodes of illness (such as a sickle cell crisis). In some cases children were not being cared for properly at school even where the school had been given information on sickle cell. This leads us to suspect that there is a difference between “knowing” that a child has sickle cell, and fully understanding the many different and serious ways that sickle cell could affect a child’s health and safety at school. This in turn suggests the need for much more extensive training for teachers on the implications of having sickle cell and the precautions that must be taken by schools to enable a child with sickle cell to remain well.

The best practice was in schools where they found a way to support children with sickle cell, but without drawing attention to them in ways that made them feel different. For example, one school that had shorts as part of the school uniform presented a problem to the child with SCD as he wished not only to wear long trousers but also in winter to have tights under the trousers to keep warm and prevent a crisis. Eventually the school changed the uniform policy for the whole school to permit long trousers to be worn.

 

This research has been published in an academic journal:

Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2010) Reported school experiences of young people living with sickle cell disorder in England British Educational Research Journal 36 (1): 125-142 [ISSN 0141-1926] http://dx.doi.org/10.1080/01411920902878941

 

Article by Professor Simon Dyson,

Unit for the Social Study of Thalassaemia and Sickle Cell Anaemia, De Montfort University, Leicester UK