Baily Thomas Charitable Fund
The study was completed in November 2018. Results and other materials will be available from this website in due course. See here for videos related to the study.
Dr Irene Tuffrey-Wijne (Principal Investigator) Kingston University & St George’s, University of London
Dr Stuart Todd University of Cardiff
Dr Janet Finlayson Glasgow Caledonian University
Dr Laurence Taggart University of Ulster
Dr Jane Bernal Independent researcher
Claire Lam (Research Assistant) Kingston University & St George’s, University of London
What is the Talking About Dying Survey?
This UK-wide survey investigated the experiences of staff talking to people with learning disabilities about death, dying and bereavement.
This online survey was sent to staff working with people with learning disabilities in residential and supported living services across the UK. It was developed by a team of researchers at universities in London, Cardiff, Glasgow and Ulster (for details, see page 26).
Aims of the study
We wanted to know:
- How much are staff confronted with the death, dying and bereavement at work? (i.e. a person with learning disabilities is dying, or is bereaved)
- How do staff communicate about death and dying with the people they support?
- How do staff cope with all this?
The survey had mostly multiple-choice questions, but there was also space for staff to tell us about their experiences and opinions in more detail.
Who was the survey for?
The survey could be filled in by any frontline staff, regardless of whether or not that team had experienced the death or bereavement of a person with learning disabilities.
- If they had no such recent experience, we only asked them questions about their general opinions and training about death and bereavement.
- If they had recent experience (in the past 12 months) of a person with learning disabilities dying, we asked them questions about that person.
- If they had recent experience of a person with learning disabilities whose relative or friend had died in the past 12 months, we asked them questions about that person.
Who took part in the survey?
Twenty-five service providers signed up to take part in the survey. With the help of the managers in these organisations, the survey was sent to 1,130 frontline staff, who filled it in anonymously. We received 690 completed surveys (an excellent response rate of 61%). These came from all four countries and all parts of the UK. Between them, these staff supported over 6,000 people with learning disabilities.
Contact and further information
Telephone: +44 (0)20 8725 0116
Research Advisory Group
This group met throughout the study. Members included people with learning disabilities, family carers, frontline learning disability staff, service managers and academics. Several members of this group feature in the videos.