The Child Stroke Project is a collaboration between the Stroke Association and the Evelina London Children's Hospital.
The first three years of the project were funded solely by ICAP charity day, and supported the delivery of a multi-centre research study assessing the needs of children, young people and their families following stroke. The Chief Investigator is Dr Anne Gordon, Consultant Occupational Therapist, Evelina London Children's Hospital.We expect the results later this year.
Stroke has, in recent years, become recognised as an important cause of death and disability in children. Stroke early in life also means children face the prospect of lifelong disability, with recent research suggesting that around two-thirds of children will have lasting neurological impairments after a stroke; including movement, learning, social, communication and behavioural problems.
Childhood stroke survivors, and their carers, also express a wide range of concerns that can evolve and change in the weeks, months and years after diagnosis. These include the poor understanding of their needs by service providers, limited public awareness of the condition, and the often hidden nature of the impact of the stroke on the child and family as a whole.
The current study will explore the lived experience of having a stroke in infancy or childhood from the perspective of both the young people themselves, and their parents/carers. Both groups will be studied through surveys and interviews, which is recruiting participants from the Evelina London Children’s Hospital, Bristol Children’s Hospital, and Great Ormond Street Hospital.
Guiding our support service
Anna Panton, Child Stroke Project Manager for the Stroke Association, and one of the researchers, says that, “the findings of our study will help guide a new support service being established jointly between the Evelina London Children’s Hospital and the Stroke Association. The results of this study will also be published to inform health, education and social services of the needs of those who have experienced childhood stroke”.