Forum for Science, Industry and Business

Sponsored by:     3M 
Search our Site:

 

Under 18s spell out what they need to enjoy quality of life on a ventilator

06.11.2006
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 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
- 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 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
Further information:
http://www.journalofadvancednursing.com

More articles from Health and Medicine:

nachricht Biofilm discovery suggests new way to prevent dangerous infections
23.05.2017 | University of Texas at Austin

nachricht Another reason to exercise: Burning bone fat -- a key to better bone health
19.05.2017 | University of North Carolina Health Care

All articles from Health and Medicine >>>

The most recent press releases about innovation >>>

Die letzten 5 Focus-News des innovations-reports im Überblick:

Im Focus: Can the immune system be boosted against Staphylococcus aureus by delivery of messenger RNA?

Staphylococcus aureus is a feared pathogen (MRSA, multi-resistant S. aureus) due to frequent resistances against many antibiotics, especially in hospital infections. Researchers at the Paul-Ehrlich-Institut have identified immunological processes that prevent a successful immune response directed against the pathogenic agent. The delivery of bacterial proteins with RNA adjuvant or messenger RNA (mRNA) into immune cells allows the re-direction of the immune response towards an active defense against S. aureus. This could be of significant importance for the development of an effective vaccine. PLOS Pathogens has published these research results online on 25 May 2017.

Staphylococcus aureus (S. aureus) is a bacterium that colonizes by far more than half of the skin and the mucosa of adults, usually without causing infections....

Im Focus: A quantum walk of photons

Physicists from the University of Würzburg are capable of generating identical looking single light particles at the push of a button. Two new studies now demonstrate the potential this method holds.

The quantum computer has fuelled the imagination of scientists for decades: It is based on fundamentally different phenomena than a conventional computer....

Im Focus: Turmoil in sluggish electrons’ existence

An international team of physicists has monitored the scattering behaviour of electrons in a non-conducting material in real-time. Their insights could be beneficial for radiotherapy.

We can refer to electrons in non-conducting materials as ‘sluggish’. Typically, they remain fixed in a location, deep inside an atomic composite. It is hence...

Im Focus: Wafer-thin Magnetic Materials Developed for Future Quantum Technologies

Two-dimensional magnetic structures are regarded as a promising material for new types of data storage, since the magnetic properties of individual molecular building blocks can be investigated and modified. For the first time, researchers have now produced a wafer-thin ferrimagnet, in which molecules with different magnetic centers arrange themselves on a gold surface to form a checkerboard pattern. Scientists at the Swiss Nanoscience Institute at the University of Basel and the Paul Scherrer Institute published their findings in the journal Nature Communications.

Ferrimagnets are composed of two centers which are magnetized at different strengths and point in opposing directions. Two-dimensional, quasi-flat ferrimagnets...

Im Focus: World's thinnest hologram paves path to new 3-D world

Nano-hologram paves way for integration of 3-D holography into everyday electronics

An Australian-Chinese research team has created the world's thinnest hologram, paving the way towards the integration of 3D holography into everyday...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

Event News

Marine Conservation: IASS Contributes to UN Ocean Conference in New York on 5-9 June

24.05.2017 | Event News

AWK Aachen Machine Tool Colloquium 2017: Internet of Production for Agile Enterprises

23.05.2017 | Event News

Dortmund MST Conference presents Individualized Healthcare Solutions with micro and nanotechnology

22.05.2017 | Event News

 
Latest News

How herpesviruses win the footrace against the immune system

26.05.2017 | Life Sciences

Water forms 'spine of hydration' around DNA, group finds

26.05.2017 | Life Sciences

First Juno science results supported by University of Leicester's Jupiter 'forecast'

26.05.2017 | Physics and Astronomy

VideoLinks
B2B-VideoLinks
More VideoLinks >>>