Healthcare professionals need to develop greater understanding of the quality of life issues facing the growing number of children who use a portable mechanical ventilator to help them breathe, according to research in the latest Journal of Advanced Nursing.
The six-year study which asked children and parents for their views discovered that most of the under 18s create their own ventilator-dependent lifestyles and have a good quality of life, but low self esteem and social exclusion remain major problems.
Professor Jane Noyes from the University of Wales, Bangor, carried out in-depth interviews with 35 ventilator-dependent children, together with 50 mothers and 17 fathers. A third of the 53 children included in the study, who ranged from one to 18 years-old, had received spinal or head injuries. The remainder had congenital conditions.
Professor Noyes found that the children's health improved when they were ventilated and that they were able to experience life more fully if they had sufficient breath.
"I have better speech, I can taste better, smell better" said an eight year-old on 24-hour ventilation via a tracheostomy. And a teenager who had just acquired a car under a motability scheme spoke of how he wanted to pass his test and "do everything everybody else does."
Spending less time in hospital and feeling less tired were other positive benefits of home ventilation.
The level of ventilator use appeared to have no bearing on children's perception of their overall health, but it did have an impact on their quality of life.
Some children didn't realise that their life was that different from non-ventilated children, while others realised that children who didn't need to use a ventilator enjoyed far more freedom and varied life experiences than they did.
Parents were particularly aware of how socially excluded their children were.
Children who were being ventilate
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Contact: Annette Whibley
wizard.media@virgin.net
Blackwell Publishing Ltd.
6-Nov-2006