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
Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement.


METHOD
Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client 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 intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. 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 intellectual disability. Staff require training and support in communicating death.
['Tuffrey-Wijne|Irene|I|https://orcid.org/0000-0002-7288-9529', 'Finlayson|Janet|J|https://orcid.org/0000-0001-8445-3581', 'Bernal|Jane|J|', 'Taggart|Laurence|L|https://orcid.org/0000-0002-0954-2127', 'Lam|Claire Kar Kei|CKK|https://orcid.org/0000-0001-8896-7002', 'Todd|Stuart|S|https://orcid.org/0000-0003-1640-2111']
D000328:Adult D001293:Attitude to Death D001601:Bereavement D006801:Humans D008607:Intellectual Disability D019452:Terminally Ill D006113:United Kingdom
communication death and dying intellectual disabilities bereavement breaking bad news truth disclosure