Abstract
Background: Illness and death are part of life for everyone, including people with intellectual disabilities (ID). This study investigated the extent to which staff communicate about death with people with ID facing terminal illness or bereavement.
Method: Staff who support people with ID 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 ID 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 ID. Staff require training and support in communicating death.
Method: Staff who support people with ID 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 ID 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 ID. Staff require training and support in communicating death.
| Original language | English |
|---|---|
| Journal | Journal of Applied Research in Intellectual Disabilities |
| Publication status | Accepted/In press - 28 Jan 2020 |
Keywords
- intellectual disabilities
- death
