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Leeds: Children's hospice aids research project
Leeds University and a children's hospice have teamed up for the world's first comprehensive research into palliative care for children.
A team from the university worked with Martin House children's hospice in Boston Spa, near Wetherby, to look into the care of youngsters with life-limiting illnesses.
Martin House gave access to a database of information compiled since
the hospice opened in 1987, when it was only the second of its kind in the world.
The two-year study found that children and their families might need hospice care and support for long periods of time, sometimes more than 20 years.
Lorna Taylor, lead researcher from the university's Paediatric Epidemiology Group, said: "One of the most interesting results is the length of survival time for children and young people, indicating this service is concerned with much more than the end of life care associated with an adult hospice.
"Over a 20 year period 1,554 children from birth to 19 years were referred to Martin House. Of the 89.5 per cent accepted, the average survival time was more than five years."
It is hoped the research will help plan services for sick youngsters as previously little information has been available.
Jan Aldridge, consultant clinical psychologist at Martin House said: "Part of our role at Martin House is to be a resource to the wider community so that health professionals and families from all social and ethnic backgrounds know we are here and what we do.
"The trustees of Martin House felt it was their responsibility to support this research and it is gratifying to know that the data shows we work collaboratively with families to support them on their challenging and moving journeys, sometimes over many years."
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