Researchers from Edge Hill University have been funded by the NIHR Health Services and Delivery Research Programme (HS&DR) to investigate respite care and short breaks for young adults with complex healthcare needs due to a life-limiting condition and/or physical disability.
Led by Professor Sally Spencer and Dr Katherine Knighting, the research team includes staff from the Faculty of Health and Social Care, and externally from the University of Liverpool, Bangor University, Lancaster University, and the International Children’s Palliative Care Network. You can find out more about the team here .
What is the research about?
Children and young adults with life-limiting conditions and/or complex physical disabilities require high levels of complex healthcare, which is normally provided by their parents or carers with support from health and social care professionals. Respite care and short breaks for children with complex healthcare needs is typically provided through children’s hospices and other specially designed children’s services which benefits both the child and their family. However, there are differences in the provision of respite care for young adults with complex healthcare needs who are no often longer eligible for children’s services.
Our aim is to identify, characterise, and evaluate the provision of respite care for young adults aged 18-40 with complex healthcare needs due to a life-limiting condition and/or complex physical disability, and to develop a conceptual framework to inform future development and evaluation of respite provision.
What research methods are we using?
We are conducting a mixed-methods systematic review. A systematic review is an established method of secondary research designed to locate, critically appraise, and synthesise the best available evidence (such as primary research studies) to provide unbiased, evidence-based answers to pre-determined research questions.
Mixed-method systematic reviews bring together different types of evidence (qualitative and quantitative studies, for example). We are including four streams of evidence in our review: evidence relating to effectiveness; costs of respite care; experiences and attitudes; and relevant guidelines and policy. See our Call for evidence