Policy – Page 3 – Sickle Cell Open Education

Education and Young People Part 2

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

Education and Young People with Sickle Cell Disease Part 3

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

Education and Young People with Sickle Cell Anaemia

Education and Young People with Sickle Cell Anaemia
Article part 1 of 3

Here in the UK the sickle cell anaemia voluntary groups the Sickle Cell Society and the Organization for Sickle Cell Anaemia Research (OSCAR) have been supporting a research project run at De Montfort University. 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. The academic team also includes Professor Lorraine Culley and Dr Sue Dyson (both De Montfort University); Professor Karl Atkin (University of York) and Dr Jack Demaine (Loughborough University).

The project commenced in 2006 and is scheduled to run until 2011. The project began with a survey of the 150 local authorities in England to see what policies they had to support children with sickle cell in schools.

We received replies from 107 local authorities. Parents with children with sickle cell in schools need to know whom to contact in the local authority if they wish to try to get things changed. However, who do they contact? The difficulty they have may be judged by the fact that of the 107 replies, there were 92 different job titles among the officers who replied. Finding the right person to speak to is therefore likely to be very difficult for parents.

Only two local authorities had a specific policy on children with sickle cell in schools, whereas many more had policies on asthma, epilepsy or diabetes, all of which are specifically mentioned in guidance for schools issued by the Department for Education and Skills.

The majority of the local authorities (92 out of the 107 who replied) did not claim to know how many children with sickle cell there were in the local schools. Not knowing the numbers suggests that the local authority will be hard pressed to meet the needs of children with sickle cell in schools.

This part of the project was successfully published as an academic article:

Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2008) Local authorities and the education of young people with sickle cell disorders (SCD) in England International Studies in Sociology of Education 18 (1) 47-60. [ISSN 0962-1214] http://dx.doi.org/10.1080/09620210802196168

Article by Professor Simon Dyson,

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