The six-year study – which asked children and parents for their views – discovered that most of the under 18s created 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 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 ventilated as a result of a serious illness or accident were particularly depressed at the way people now viewed them as a ‘ventilator-dependent’ child and angry at the many barriers that prevented them from taking part in the activities they once enjoyed.
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 day…but now they don’t…I 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
Greater understanding of the needs and aspirations of ventilator-dependent children and their parents is essential, concludes Professor Noyes, especially as the situation is increasingly common due to recent medical advances and the increased use and availability of portable ventilators.
“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. This ensured that a wide range of views and conditions were represented in the findings.
Annette Whibley | alfa
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