Call for evidence: Respite care for young adults with complex health care needs

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We are carrying out a mixed-methods systematic review which focusses on respite care and short breaks for young adults with complex healthcare needs due to a life-limiting condition and/or complex physical disability.

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. We are interested to learn more about what is currently being delivered for young adults (for this review we are defining young adult 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for published research studies, but we believe that some of the most useful information could come from ‘grey’ or unpublished literature: for example, evaluations that have not been published yet, and reports that have been produced by service providers in various sectors (e.g.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.

How can you help?

If you know of any evaluations or reports of formal or informal respite care for young adults with complex healthcare needs, you can submit the evidence for inclusion in the review – please note the cut-off for submission of evidence is February 2019. Please be aware that not all submitted evidence will be suitable; it must be assessed against inclusion criteria. We are particularly interested in evidence that looks at the following:

  • Assessments of effectiveness – e.g. evaluations of how well respite care works for young adults with complex healthcare needs, their carers, or families (such as wellbeing or satisfaction with care)
  • Cost-effectiveness information – e.g. information to do with the cost of providing respite care for young adults with complex healthcare needs, and the costs to young people or their families
  • Evidence which looks at experiences, attitudes or beliefs – e.g. surveys, interviews, focus groups with young adults, their carers, or families, and those that commission or deliver respite services

We can only accept evidence written in English during the period 2002-current, which includes an author and a date. We will only include evidence that can be published in the public domain. We can accept evidence from other countries, however it would be useful if you could tell us how relevant and applicable this would be in a UK setting.

Please send electronic submissions to: pilkingg@edgehill.ac.uk

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