Childhood stroke can affect the whole family. Parents often feel a range of emotions from shock and bewilderment to feelings of isolation and frustration. Other children in the family can be affected by the stroke too. They may not understand what is happening to their brother or sister, which can be upsetting and confusing.
Additionally, our factsheet childhood stroke provides information about the causes of stroke in children, the treatments and coping with life after childhood stroke. We've also developed childhood stroke handbook, which explains to children what happens when they have a stroke and also has advice for parents.
Here we list other resources, information and organisations that you might find supportive.
- TalkStroke – our discussion forum for everyone affected by stroke.
- Follow us on Facebook.
- We are aware of two other Facebook groups for the parents of childhood stroke survivors: My child had a stroke and Childhood stroke support - a UK based site with information and a chatroom for parents of stroke survivors.
- Hemi Chat - a parent-led support group with access to a Facebook group and opportunities to meet other families affected by hemiplegia across the UK.
- East Kent Childhood Stroke Support Group - a support group set up by parents in the East Kent area.
- Face to Face - a parent befriending scheme run by SCOPE.
Stroke, brain injury and hemiplegia organisations
- Hemihelp - provides information and support to children and families affected by weakness on one side of the body. They have activity and support groups for parents and siblings, and give advice on aids and equipment.
- Brain Injury Hub - in-depth information on childhood brain injuries (including stroke).
- Child Brain Injury Trust - an organisation that supports children, young people and families affected by acquired brain injury. Provides information, advice lines, local services and events.
- Cerebra - an organisation that supports children, young people and families affected by neurological conditions. Provides information, advice lines, local services and events. Has a team who will customise equipment for children with disabilities.
- Different Strokes - an organisation that supports younger people affected by stroke, and offers an information pack about stroke in children.
- CHASA - an American site providing a range of information and resources on stroke in childhood and hemiplegia.
- International Alliance for Pediatric Stroke - an international site drawing together a range of information and resources on stroke in childhood.
- CPSSA - a Canadian site providing a range of information and resources on stroke in childhood.
- Calgary Pediatric Stroke Program - a Canadian site addressing some of the frequently asked questions around stroke in babies/around the time of birth.
- Strokidz - an Australian site providing a range of information and resources on stroke in childhood.
- Contact - an organisation that supports the families of children with disabilities. Provides a range of services and information.
- Scope - an organisation that supports the families of children with disabilities. Provides a range of services and information.
- Young Sibs - an organisation that supports the siblings of children with disabilities. Provides information, resources and a chat room.
Education and advocacy organisations
- IAS Services offer information, advice and support for disabled children and young people, and those with special educational needs and their parents - and you can check here if there is a service in your area.
- IPSEA - an organisation that offers legal advice, support, and training for parents around Special Educational Needs.
- Council for Disabled Children - a national umbrella body that brings together a diverse range of organisations that work with and for disabled children to support the development and implementation of policy and practice.
- Statutory guidance on supporting children at school with medical conditions, including examples of care plans.
- Sickle Cell and Young Stroke Survivors and Sickle Cell Society - organisations that offer information and support to children, young people and families affected by stroke and sickle cell disease in childhood.
- Epilepsy Action and Young Epilepsy - organisations that provide tailored information about epilepsy for children and young people.
- Cardiac risk in the young and the British Heart Foundation - organisations that provide tailored information about heart conditions in children and young people.