Research overview
There are four stages to the CECiLiA project:
Stage 1 – a national co-designed survey of people with learning disabilities and autistic people including children aged 5 and older, families and carers, Care (Education) and Treatment Reviews panel members, and health and social care professionals about experiences of Care (Education) and Treatment Reviews. For those who may find it difficult to access the survey we will also offer the chance to take part in a structured interview.
Stage 2 – attending Care (Education) and Treatment Reviews, Care Programme Approach (CPA), and other patient meetings to collect naturalistic data about what happens at these. We will also conduct semi-structured interviews with attendees, including people with learning disabilities and autistic people, and families and carers.
Stage 3 – using publicly available anonymised data that the NHS collects about everyone with a learning disability or autism who is admitted to hospital we will conduct time-series modelling to see what sorts of things helped them and what sorts of things did not help them get out of hospital.
Stage 4 – we will integrate findings from the other three stages using triangulation techniques, bringing these together to work out what the research tells us. This will lead to the development of good practice guidance.
We have partnered with Learning Disability England, the National Autistic Society, and the Challenging Behaviour Foundation who will each lead one of our three Lived Experience Advisory Panels (LEAPs). LEAPs will co-produce materials and actively engage throughout each stage. These will include:
• People with learning disabilities
• Autistic people
• Carers and family members
Click the below links to access more detailed information about the research (links to external website or downloads):
For an easy read version of our research please click below.
This study is funded by the National Institute for Health and Care Research: Health and Social Care Delivery Research (HSDR) programme. Please click below for a copy of the study protocol.