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New research to help young adults with complex care needs

Date: 16 November 2017

Edge Hill University has received NIHR funding to review the provision of respite care for young adults with life limiting conditions or complex needs.

The research team, led by Sally Spencer, Professor of Clinical Research in the University’s Postgraduate Medical Institute, has received £168,554 to evaluate the provision of respite care services when the young person turns 18.

It is estimated that more than 55,000 young adults are living with life-limiting conditions and 100,000 young people are living with disabling conditions in England.  However, due to improvements in medical care, the number of these young people has increased by almost 50 per cent in the last decade.

Young adults with these needs require high levels of complex care, normally provided by their parents or carers with support from health and social care professionals.  

Respite care provides relief for families and carers that helps to reduce stress and unplanned hospital admissions. Before the age of 18, respite care and short breaks for carers are provided through children’s hospices and other specially designed children’s services.

However, as these young people reach adulthood they are often no longer eligible to access children’s services and there are major geographical and service differences in the nature of respite care services provided for young adults. 

Professor Spencer is working with Professors Barbara Jack, Mary O’Brien and Brenda Roe and Dr Lucy Bray, Dr Katherine Knighting and Dr Michelle Maden from Edge Hill University. The team is joined by Professor Jane Noyes from Bangor University, Dr Ceu Mateus from Lancaster University and Julia Downing from the International Children’s Palliative Care Network.

Professor Spencer said: “An urgent need for a review of current evidence and policy has been identified by respite care providers and charities. Our funding, secured through a very competitive process, will evaluate what is currently known about respite care provision for this population to inform the development of future services and identify the need for new research.

“We will work closely with clinical colleagues, charity partners, an expert committee and a patient and public advisory group who have first-hand experience of the issue to gather and summarise research from across the world.”

This research will take 18 months to complete.

Professor Jo Rycroft Malone, Programme Director of the NIHR Health Services & Delivery Research (HS&DR) Programme said: "I am pleased that the NIHR is supporting research in such an important area. Respite care is a vital service for young people with life-limiting conditions and their families. I hope that this research will identify what is working well and where provision can be improved so that services can be developed to better suit the needs of this group."

For more details, please see the project page.

  • Summary:
    New research to review the provision of respite care for young adults with life limiting conditions or complex needs.
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    • Congenital Disorders
    • Critical Care
    • Genetics
    • Health Services and Delivery Research
    • Long-term conditions in children
    • Musculoskeletal Disorders
    • Neurological Disorders
    • Renal Disorders
    • Respiratory Disorders
    • Very rare diseases
    • Cancer
    • Cardiovascular Disease
    • Children
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