Heart children 'overprotected'

Many children who have had heart problems say are not allowed to join in activities with friends

Teenagers who had congenital heart problems as children feel they are wrapped in cotton wool by well-meaning adults.

Researchers found that they felt excluded from social activities, such as sport, because of adults' fears for their health.

The restrictions placed upon them can lead to them feeling isolated and "different" from their friends, and unable to join in particular school activities.

Most of the teenagers questioned, aged 11 to 18, said exclusion from PE classes affected them.

We must now develop rehabilitation and support for these children as they grow up

Professor Bob Lewin,
BHF Rehabilitation Unit

Others said they resented overprotective parents and teachers.

Seven thousand children are born every year with heart defects, such as a hole in the heart, and thanks to advances in surgery and treatment over the last 40 years, more and more survive and lead "normal" lives.

The research team, led by Professor Bob Lewin, of the British Heart Foundation Rehabilitation Research Unit in York, say teachers, parents and teenagers themselves should be better educated about the effects of congenital heart diseases - perhaps even including classes for cardiac rehabilitation.

Perceptions

Thirty-seven children were interviewed directly, and 57 completed questionnaires.

Over 70% had serious heart defects, but almost 80% classed their health as "average or "good".

And two thirds saw themselves as the same or only slightly different to their friends.

After this first study, which talked to teenagers from Leeds, Professor Lewin and his team plan to carry out a nation-wide survey to see if the initial findings are confirmed.

Shift in priorities

He said: "Initially, the priority was to develop new surgical techniques to correct congenital hart problems.

"This research shows that we must now also develop rehabilitation and support for these children as they grow up so they, and others around them, understand their condition and how to deal with their future life."

Professor Sir Charles George, medical director of the BHF, said: "We need to build on medical progress by providing support and education for children and their families that allow them to flourish with a new lease of life.

Mavis Moore, director of the Grown Up Congenital Heart Patient's Association, which works on behalf of adults, said teenagers were often caught in the gap between the child and adult support groups.

"We have some work ahead of us. Teenagers are quite a specific group, and it's difficult to address correctly all the problems they may have.

The research is published in the journal Cardiology in the Young.

The BHF has launched two new leaflets for families affected, available by calling 0207 935 0185.

GUCH can be contacted on 0800 854759.