Under-18s spell out what they need to enjoy quality of life on a ...( d as a result of a serious illness or a...),Health

Adjusting to home and school life again could be particularly difficult.

"It was a real shock because everyone was so looking forward to me coming home and we didn't think about what it would be like when I actually got home" said one teenager after a serious accident. "I tried to go back to school, I went back for two days and I just couldn't do it. I was just so upset that everything had changed."

Another was upset that friends had drifted away. "They used to come here every daybut now they don'tI wanted to be friends but they didn't."

In contrast, children who had depended on ventilation for all or most of their lives, and knew nothing different, appeared to have adapted to their circumstances. However, many still disliked being treated differently to non-ventilated children.

Children in the study generally associated a good life with a number of quality of life experiences, including:

• Being treated with respect
• Being able to communicate effectively
• Being able to live at home in quality housing
• Receiving quality services
• Being able to get out of the home and take holidays
• Having a good social life
• Receiving a good education and
• Being able to make decisions and gain independence.

But they needed greater support to achieve many of these aspirations and the homecare services they received didn't address all of them. Not having a family car was a particular issue when it came to social exclusion.

Greater understanding of the needs and aspirations of ventilator-dependent children and their parents is essential, concludes Professor Noyes, especially as the situatio
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Contact: Annette Whibley
wizard.media@virgin.net
Blackwell Publishing Ltd.
6-Nov-2006