"The acceptance of children's dependence on machines to live has brought about the need for nursing, medical, social and biological boundaries to be redefined, especially around children's meanings of health, what they understand to be good quality of life and what they need to achieve it" she says.
"There are many ethical and funding issues surrounding the resources made available to ventilator dependent children.
"While these findings are unlikely to be helpful in complex legal cases - where the courts have to decide if a child should be treated with assisted ventilation - they do provide healthcare professionals with children's insights, which evidence suggests may be different from their own".
"The findings concur with current UK children's healthcare policy that higher quality, more flexible and better co-ordinated nurse-led homecare is likely to improve the quality of life of ventilator-dependent children and maximise health gain.
"However the services provided must recognise the needs and aspirations of children and parents in this increasingly common area of healthcare."
The children featured in the six-year study lived in a number of locations throughout the UK.
They covered a wide age range 11 were under five, 24 were aged six to 12 and 18 were teenagers. A quarter were from single parent families, a quarter were from ethnic minority groups and six per cent were in care.
Some needed to be ventilated 24-hours a day, while other only needed to be ventilated overnight or when they were asleep. Ventilator use frequently increased during periods of acute illness.
A range of methods were adopted to overcome communication difficulties during interviews, including encouraging children to express their views by drawing, playing and using their computers.
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Contact: Annette Whibley
wizard.media@virgin.net
Blackwell Publishing Ltd.
6-Nov-2006