Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: A UK-wide survey of intellectual disability support staff

BACKGROUND: People with intellectual disabilities (ID) are protected from knowing about dying. This study surveyed how staff communicate about death with people with ID facing terminal illness or bereavement.

METHOD: ID staff in the UK (n=690) completed an electronic survey. Detailed data were obtained from staff where a client with ID had died in the past 12 months (n=111), was terminally ill (n=41), or had been bereaved (n=200). Analysis included descriptive and chi-squared statistics.

RESULTS: 52.6% of people with ID who had a terminal illness were told about their illness, and 18.1% were told they would die of it. Of those experiencing an anticipated bereavement, 32.4% of staff said no-one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement.

CONCLUSION: Death affects many people with ID living in ID services. Staff require training and support in communicating death.