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.

S Dyson Paper Figure 3

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.

S Dyson Paper Figure 4

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

 

Types of OER?

SCOOTER Teaching Resources

What type of teaching resources are we going to produce?

SCOOTER will release onto the website a significant volume of teaching resources in the form of open educational resources (OERs) to meet the needs of the science and healthcare communities, as illustrated in Figure 1.

SCOOTER Teaching Resources

These teaching resources might be in the form of learning objects – that is a bite-sized chunk of learning material that might include an animation with voice over to explain a scientific concept. There might be a short quiz to test the user’s understanding. OER will also include video, photographs and drawings, not just of benefit to education but research and more specialist requirements of the healthcare professions.

Sickle Cell and Thalassemia are a fascinating medical area and will serve as focus from which to release materials mainly in biomedical science and health, and also reaching arts, humanities, law and technology.

Who is producing these resources?

Much of this material already exists with academic staff in the Faculty of Health and Life Sciences at De Montfort University. Staff in other Faculties including Business and Law, Art and Design and Humanities are also contributing material relevant from their area. In the Faculty of Technology we have a final year “Gaming Technology” project student developing a diagnostic game on anaemia. Students also from Art and Design are producing paintings of the human body in relation to the subject, helping us see science through the eyes of an artist.

Discussions are underway with commercial organisations such as 3M and Novartis who have expressed an interest in contributing resources. The UK Sickle Cell Society have kindly offered us the opportunity to search their archives for suitable material. The NHS Screening Service have offered resources. Two Midlands Hospitals – Birmingham and Leicester Royal Infirmary have offered laboratory data, histological images and even a book chapter.

Why do we need these resources?

The Government is keen to support STEM subject education (Science, Technology, Engineering and Mathematics), and the SCOOTER resources will provide high quality educational materials to support universities in achieving this goal. In addition, the Government also is keen to promote genetics education within the healthcare sector – to “incorporate genetics education into professional education at all levels” (1) , so, SCOOTER will involve relevant healthcare sector stakeholders and use specialist staff contributors including genetics, midwifery and nursing.

The final need that SCOOTER addresses is the requirement for more educational materials in the social aspects of healthcare in response to the changing global scene(2). SCOOTER will meet these needs and release OERs on social aspects of health. SCOOTER will link arts to sciences as a means of reaching new audiences, an approach used by the Wellcome Trust. SCOOTER also bridges technology and law, providing even wider potential interest.

Join the SCOOTER community!

Please subscribe to our Forum and follow us through Twitter and Facebook. We are looking to build a community of users, not just resource contributors but people who wish to use the resources, and those of you perhaps interested in more formally evaluating and reviewing them.

References

  • Department of Health 2008. “Our Inheritance, Our Future”.
  • World Health Organisation 2006. Sickle Cell Report.

What is open education?

Scooter Wordcloud

What is open education?

Open education in the widest sense should enable students to choose their own educational settings, experiences and materials. The philosophy of openness started to specifically apply to technology in the late 1990’s with the open source software community passionately sharing their computer code and allowing the creation of derivative works. Today we have notable brands such as OpenOffice.org competing against Microsoft Office, and open source versions of probably all propriety software.

In 2002 the open phenomenon spread to educational resources with the Massachusetts Institute of Technology (MIT) deciding to release their course materials for free on the internet in the form of the OpenCourseWare initiative. Also in 2002 the United Nations Educational, Scientific and Cultural Organisation (UNESCO) first coined the phrase open educational resources (OER), and defined it as “a strategic opportunity to improve the quality of education as well as facilitate policy dialogue, knowledge sharing and capacity building”. Alongside these initiatives open licences have been developed including Creative Commons which provides a simple set of clauses to facilitate the sharing and borrowing of materials.

Scooter Wordcloud

Have open education initiatives achieved their goals?
There certainly has not been a shortage of individuals and institutions willing to share their images, modules and even entire courses on the internet. In the UK, since the repository JorumOpen was launched in 2008 there have been over 10,000 deposits from over 800 institutions and individual authors. What is more difficult to ascertain is the extent to which materials have been used, repurposed and re-deposited, therefore has knowledge been genuinely shared and had an impact, or are the resources gathering dust?

The William and Flora Hewlett Foundation in the US support social and environmental projects around the world and champion open education in order to “equalize access to knowledge for teachers and students”. One example is OER Africa which already boasts a tremendous catalogue of OERs and more importantly whose mission is to connect like-minded educators and academics and build collaborative networks.

A challenge that open education faces to achieve its goals is discoverability. Currently OER programmes support the building of separate repositories to house resources offering users multiple places to search and a confusing choice of where to deposit material. It would be far more effective to think from the user’s perspective and make OER discoverable from search engines, and to develop a common procedure for tagging and cataloguing to provide a consistent approach as we’ve seen with licensing.

SCOOTER open education project in the UK.

The SCOOTER project run by the School of Allied Health Sciences at De Montfort University in the UK aims to release OER on the subject of sickle cell and thalassemia, depositing all materials on JorumOpen and providing a searchable database or OER. Resource pages will be discoverable via the search engines. The SCOOTER team are passionate about building a vibrant community of users. Within a week of being launched, the SCOOTER website attracted unique visitors including a sickle cell patient and a researcher looking at natural ingredients as a potential therapy. Through the project forum and social network the team aim to grow the community and involve them in resource production, peer review, use and reuse content.

New challenges will surely emerge as economic factors change the face of Higher Education in the UK and wider a field, and Open Education may hold the key to the future as students choose their own educational settings and tailor-make their own experiences.

100th anniversary of the discovery of sickle cells

Sickle Cell Herrick Paper

This year 2010 marks the 100th anniversary of the publication that first described the medical condition Sickle Cell Anaemia. James Herrick was a doctor in Chicago, USA, and wrote about his observations of a patient with severe anaemia. When blood samples were viewed under the microscope Herrick noted “peculiar elongated and sickle-shaped red blood corpuscles”.

The paper was first published in the Archives of Internal Medicine, November 1910 and has since been re-released by Yale Journal of Biology and Medicine in 2001 (Herrick 1910).

The patient had been brought up in the West Indies, and around the age of 17 started to experience palpitations and shortness of breath. Herrick conducted a thorough physical examination and records his observations in his 1910 paper. The diagnostic tests performed were basic by today’s standards. The urine was analysed and was found to not be at all abnormal. No traces of tuberculosis bacteria were found in the sputum, and other routine tests of that time such as stool examinations yielded no abnormal results.

When Herrick started to examine the blood, the first “peculiarities” started to appear. A blood sample was taken and a blood count performed, but the numbers of red and white blood cells were normal. When studying the blood cells by light microscopy, the first anomalies started to appear, and Herrick records beautifully in his paper the first ever appearance of Sickle Cell Anaemia.

Sickle Cell Herrick Paper

“The shape of the reds was very irregular, but what especially attracted attention was the large number of thin, elongated, sickle shaped and crescent-shaped forms”. (Herrick 1910).

Herrick conducted a nice experiment and compared the patient blood to a control sample of healthy blood, showing that the sickle shapes were artefacts of the preparation. His final verdict on the diagnosis remained open, and Herrick urged the medical community to remain vigilant for similar cases. One hundred years on, our knowledge of Sickle Cell Anaemia is greatly advanced and we are all familiar of the images of the sickle shaped cells.

To celebrate the 100th anniversary

To celebrate the 100th anniversary this website http://www.sicklecellanaemia.org has been established by De Montfort University to provide a centre for educational resources on the subjects of Sickle Cell Anaemia and Thalassemia.

The project called SCOOTER “Sickle Cell Open- Online Topics and Educational Resources” is funded by the UK HEFCE and managed by the Higher Education Academy (HEA) and the Joint Information Systems Committee (JISC) as part of their Open Educational Resource initiative.

 

Reference

Herrick J B (1910). Peculiar elongated and sickle-shaped red blood corpuscles in a case of severe anemia. Republished in 2001. Yale Journal of Biology and Medicine, volume 74, pages 179-184. Available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2588723/pdf/yjbm00012-0035.pdf.

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

S Dyson Paper Figure 5

 

Article by Professor Simon Dyson,

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