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Building a Roadmap to teach science to chronically ill children with ICT

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Doug Clow
14 June 2011

Presentation at CALRG Conference 2011 by Denise Whitelock

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Denise presenting


With Autonomous University of Barcelona.

Context: first project was helping students who are chronically ill, spend a lot of time at home or hospital. Often can't spend time at school. Lower science literacy level, spiral curriculum makes it problematic to catch up. In Catalonia, do have hospital school teachers (not a full school as at Great Ormond St) they're not necessarily science specialists.

Created program called Nefreduca, targeted children with kidney disease - because science lessons more effective when targeted to learner's illness. The kids are listening to doctors and nurses all day, so know words like protein, and symptoms - but don't necessarily understand them or reason to comply with treatment regime.

Needed OERs - animations and simulations found on the web. Animations, moving picture helps. Great resource.

Catalonian adminstration very impressed - invited them to apply for money from Spanish Government to progress using science technology to teach chronically ill children: proposal to build a roadmap. (As done with e-Assessment). Aim to get consensus view or vision for progressing the goal. Requirements pull and technology push (moving fast).

Approach: roadmap with four year plan for Spanish Government. Used Delphi method - online collaboration/survey. Had medical staff, teachers, hospital administrators, teachers, education specialists, and universities academics - key stakeholders, bought in to the activity.

  • Stage 1 preparation - key documents and current practice. Charities too
  • Stage 2 desktop analysis and consultaiton
  • Stage 3 adapted Delphi method, electonically - survey 'X says this, do you agree' with lit quotes

Impressive and important to have key experts throughout process, including politicians.

Experts surveyed about: benefits of ICT; role of multi-discipline teams to instantiate; availability of materials (Catalonian, language issue); training of hospital teachers; difficulties to overcome.

Very good getting response by phoning up experts and filling in survey for them. Went back until got consensus. Agreement that can't delay this.

At the end, had four parallel activities over four-year period: ICT infrastructure; training needs of professionals; development of materials; virtual repositories and portal. Each had a plan.

Need to work collaboratively, rather than hierarchically, agreed to have training on that. 

Also strong theme of need for evaluation, across all four activities.

Big potential impact: children less isolated; professionals engaged; cost of home schooling reduced; children's quality of life better.

Steve: Revitalisation for our concern here about disabled students?

Denise: I don't really know. Have tremendous interest in Imperial College. Medical schools really interested in this - not just chronically ill children, but what it can do to help patients to understand, and hence comply with treatment regime, which can be expensive.

Jon: Focus on science because of illness, rather than general?

Denise: I and Roser (collaborator) are scientists! Came from concern that kids are struggling in science curriculum. They had misconceptions from hearing nomenclature but not understanding it.

Jon: What about the family dimension? Parents?

Denise: Was important. What happens is parents can be very distressed, find it sometimes so emotional they find it hard to support the child. Get a joint understanding, is very good for everyone. A surprising finding.

James: Tremendously worthwhile project! Ethics, sensitivity - not just to child but the family. Have had experience of child with leukemia, another someone who looks after blood at York - young child wanted to know, couldn't understand the consultant - he had to mediate it, they couldn't do that. In classroom, want to ask questions, answers full. Possible if child exploring, professional might be answering things that could be distressing if not well handled.

Denise: Is why professionals wanted training. Focus isn't necessarily the disease, is on normal biology. Medics have become involved for the first time, really good.

James: Some children, opp to ask questions haven't had answer, wouldn't know where a conversation is going, may be genuinely curious. Medical ethics in other countries, where things are kept from the patient, different with a child.

Denise: A young lad of 12, has to spend 24h in dialysis. Said this is great, can take laptop in, can actually do something. Nefroduku was practical things to do - had potatoes mashing them up with an enzyme, using things like teeth. Other things to do beyond the computer. Needs to be web-based, not practical, because they're not well all the time. Explored lots of ways to teach them.

Doug Clow
14:55 on 14 June 2011

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