Talking About Dying Survey (2017-2018)

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.

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?

Almost 700 staff took part in the survey (in 2017-2018). They worked with people with learning disabilities in residential and supported living services across the UK.

Results and top tips


Introduction to the survey by Prof Irene Tuffrey-Wijne

Five stories

If you were terminally ill… would you want to know?

The researchers

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

Funder: Baily Thomas Charitable Fund

The research advisory group for the Talking About Dying Survey

The 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.