The Childhood Stroke Project was a collaboration between the Stroke Association and the Evelina London Children's Hospital.
The first three years of the project were funded by an ICAP charity day. We carried out a multi-centre study to identify the needs of children, young people and their families following a stroke in childhood. The Chief Investigator was Dr Anne Gordon, Senior Consultant Occupational Therapist, Evelina London Children's Hospital.
Why we did research in this area
Stroke has, in recent years, become recognised as an important cause of death and disability in children and young people. Stroke early in life has the potential for a long-term impact on the lives of children and their families. We know that recent research suggests that up to half of children will have some form of lasting disability after a stroke; including changes to movement, learning and social skills, communication ability and managing their behaviour and emotions.
Our research aimed to provide more detailed information on the needs of families and young people after a stroke in childhood - both immediately and in the longer term. It looked at 'needs' in as broad a range as possible - across health, care, education, and family support. By looking at the needs of families we aimed to suggest services and strategies that might help them adjust to life after a child's stroke.
What we did
We surveyed parents of children who had an ischaemic or haemorrhagic stroke between birth and 18 years old, and young stroke survivors aged between 12 and 18. Participants were recruited from three children's hospitals with specialist paediatric stroke services in England (Evelina London Children's Hospital, Great Ormond Street Hospital, and Bristol Children's Hospital) and research was carried out at Kings College London in the School of Population Health & Environmental Sciences. A survey was designed to ask parents and young people to describe levels of need in a range of different areas such as movement, mobility, communication, travel independence, tiredness, emotional wellbeing, carer support and family finances
We also invited a sample of participants to participate in a semi-structured interview to identify recurring themes and topics. The interview data aimed to complement the survey data by providing more detailed accounts of parents' experiences of caring for a child affected by stroke, describing the quality of care they received and identifying strategies that parents used to organise care.
What we found out
Of 44 survey participants (39 parents, 5 young people), over two-thirds reported at least one unmet need. Over half had difficulties in school-related activities, and over one-third in leisure activities and social relationships. This was similar to the needs of adult stroke survivors in an earlier study. Where a child had higher a level of disability, a higher number of needs was reported.
The children of the 12 parents we interviewed varied in age at the time of stroke, time since stroke and current level of disability. Overall, parents' accounts described the profound impact that childhood stroke can have, not only on the individual child but also on the family. The stroke occurred as an unexpected event, a condition about which, in general families knew little and associated with ageing, rather than infancy or childhood.
Certainly, at the time when (my daughter) had her stroke it had a huge impact on me and the whole family. In some ways you don't realise it because it's the last thing you're thinking about or care about, but yeah it had a very big impact on me.
In general, parents were satisfied with the acute specialist care that their child received but they expressed concerns about how to manage life and ongoing rehabilitation needs after discharge from the hospital. Families also talked about the continued need to access timely and tailored information and the difficulties of knowing how best to inform and work with schools. They also reflected on their experiences of coordinating different services and appointments alongside managing longer-term family adjustment and their own needs for support.
You need to know what's available in your area because otherwise you just spread yourself so thin that you wouldn't know where to go.
What we concluded
Children and young people and their parents have high levels of unmet need across a wide range of areas in the months and years after stroke in childhood - a greater range than those indicated by medical assessments and clinical outcomes alone. Parents' experiences varied depending on the needs of their child, but also the family situation and geographical location.
The information provided by these studies supports the importance of a need-based approach to maximising health and well-being, and the development and coordination of services to support families and children after childhood stroke. The studies are supportive of the findings of the 2017 childhood stroke guidelines.
The Chief Investigator of the study Dr Anne Gordon has commented:
"The findings of this study further reinforce the importance of listening to families to ensure they get the right support at the right time after their child is diagnosed with a stroke. Children, young people and families have diverse needs and priorities that change over time, so we need to adopt an approach that asks 'what do you need right now?'
Parents and young people are telling us they want health professionals to help them manage their own health condition and be able to make choices, so they can get on with doing the day to day things that matter to them most such as playing with friends, going to school and learning, being able to get dressed, have fun and be independent."
Thank you
We would like to thank the families and young people who participated in the study and the three sites that helped recruit participants (Bristol Children's Hospital, Great Ormond Street Hospital and Evelina London Children's Hospital).
For information, resources and sources of support relating to stroke in childhood, please visit our Childhood stroke section
Papers linked to this study
Gordon AL, Nguyen L, Panton A, Mallick AA, Ganesan V, Wraige E, McKevitt C. Self-reported needs after pediatric stroke: European Journal of Paediatric Neurology 2018; 22(5):791-796
McKevitt C, Topor M, Panton A, Mallick AA, Ganesan V, Wraige E, Gordon A. Seeking normality: Parents' experiences of childhood stroke: Child: health, care and development 2019; 45(1):89-95