Researchers at Edge Hill University are leading a collaborative NIHR-funded systematic review investigating respite care and short breaks for young adults aged 18-40 years with complex healthcare needs due to a life-limiting condition and/or complex physical disability. If you know of any unpublished work (e.g. service reports, evaluations) or currently ongoing research or evaluations being undertaken on this topic which could be of relevance, the team would like you to get in touch. Please follow the link for full details of the call for evidence and the review website.
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. However, as these young people reach adulthood they are often no longer eligible to access children’s services and there are major geographical differences in the provision of respite care for young adults. The researchers are interested to learn more about what is currently being delivered for young adults (for the review they are defining young adults as those aged 18-40 years), what works well, and where provision and services can be developed and improved to better suit the needs of this fast-growing population.
The review team will search comprehensively for published research studies, but believe that some of the most useful information could come from ‘grey’ or unpublished literature: such as evaluations that have not been published yet, and reports that have been produced by service providers in various sectors (e.g. charity and not for profit) or government departments and regulators.
Should you know of any evaluations or reports of formal or informal reports you are asked to submit the evidence for inclusion in the review by February 2019. They are particularly interested in evidence that looks as assessments of effectiveness, cost=effectiveness information and evidence that looks at experiences, attitudes or beliefs using surveys, interviews or focus groups with young adults.
Evidence must be written in English since 2002 and they will be accepted from countries outside of the UK.
Follow this link to find out more and submit your research.