Children and heart disease
- About 4,600 children are born with a heart defect every year in the UK.
- The BHF has contributed to advances in the field of congenital heart disease. Now about eight in 10 babies with heart defects will grow up to adulthood.
Children and heart disease
Heart disease can be a difficult burden to bear for the most resilient of adults, but for children born with congenital heart disease the pressures can be even greater. In 2005, the BHF funded a study to identify how these young people are coping – and how they can be helped.
Action
Growing up in today’s complex world can be hard enough without the added problems of living with a potentially life-threatening disease. But, as Nicki Cooper, Head of Education at the BHF puts it “A generation ago, the focus for treating congenital heart disease was on giving children life. Now we also need to focus on quality of life.”
The BHF study, led by researchers at the University of York, set out to explore not only how children cope with having such a disease, but how the restrictions it can impose affect their psychological and social well-being. A detailed questionnaire was used to interview 640 youngsters between the ages of eight and sixteen to develop a new measure of quality of life from their perspective.
Impact
The results were mostly heartening. The majority of children who took part seemed to have developed successful ways of coping with the disease and adapted well to living with it. But, disturbingly, some children described severe psychological problems including poor self-image, isolation and a fear of the future.
Their main concern was over how their condition restricted their activities and prevented them joining in with things their friends enjoyed. Like all children, they need to be liked and not feel left out, but some felt the restrictions their condition imposed on their day-to-day activities were misunderstood by both their friends and teachers and led to them becoming isolated and treated as ‘different’.
The study concluded that teachers needed to be more supportive and better informed about congenital heart disease and its potential psychological as well as physical effects, and that this can be achieved by developing better links and communication between teachers and health professionals.
Next steps
As a result of these findings, the BHF is developing a new website offering support and information to young people with congenital heart disease. We will create a virtual community where young people can share experiences and get advice. We aim to recruit 50 teenagers with heart conditions to help participate in the design and development of the website. In time we hope that all teenagers with heart conditions will become regular visitors.