New Childhood Stroke Handbook

The Stroke Association have created a new handbook for families affected by childhood stroke. Anna Panton, Childhood Stroke Project Manager from the Stroke Association, explains more about the project.
Stroke handbook

What is the Childhood Stroke Handbook?

The Childhood Stroke Handbook is a new resource – helping children to understand about stroke in childhood.  The Handbook was developed as part of the Childhood Stroke Project.

What is the Childhood Stroke Project?

The Childhood Stroke Project was set up in 2013 – a collaboration between the Stroke Association and Evelina London Children’s Hospital.  The project involves offering support to families, helping devise information and resources, and raising awareness of stroke in childhood.

How common is stroke in childhood?

Stroke is a condition that is often associated with older people but anyone can have a stroke including babies and children. The causes of stroke for children are very different from those for adults. Childhood stroke affects around five out of every 100,000 children a year in the UK - around 400 children a year. The term ‘childhood stroke’ covers from 28 weeks of pregnancy until the age of 18.

Who came up with the idea of the Childhood Stroke Handbook?

Part of the project involved setting up a support service for families and young people.  The Support Service Coordinator meets families when a child has had a stroke – in the early days in hospital but also longer term when back at home and school.  Lots of children and families have questions about stroke, and want to know how to talk about stroke to their family, friends, and professionals like teachers. The Support Service Coordinator could not find a resource to meet these needs, and so brought together a group of children, parents and health professionals working at Evelina London Children’s Hospital to devise the Childhood Stroke Handbook. 

 What does the handbook include?

 The handbook includes information on:
  • What is a stroke? Explaining how the brain works, and what happens when you have a stroke
  • What happens when you have a stroke? Explaining what happens when you go to hospital, and what kind of tests and treatments you might have
  • Getting better when you have a stroke. Explaining about therapy and rehabilitation
  • Talking about your stroke. Explaining about feelings after stroke, and how you might want to talk about them
  • Sickle cell disease. Information about sickle cell disease and stroke, treatments you might have, and things that might help
The wording and pictures in the booklet were guided by the comments of children and parents, and the tips in the ‘What can help’ sections come from young people and families.  You can download a full copy here. If you would like to request a paper copy, please email me on anna.panton@stroke.org.uk For more information on the Childhood Stroke Project, please visit stroke.org.uk/childhood  
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