Communicating about death and dying with adults with intellectual disabilities (ID) who are terminally ill or bereaved: a UK-wide survey of ID support staff

Irene Tuffrey-Wijne, Janet Finlayson, SJ bernal, Clare Lam, Stuart Todd, Laurence Taggart

Research output: Contribution to journalArticle

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.
LanguageEnglish
JournalJournal of Applied Research in Intellectual Disabilities
Publication statusAccepted/In press - 28 Jan 2020

Fingerprint

Terminally Ill
Disabled Persons
dying
Intellectual Disability
Bereavement
disability
staff
death
illness
Training Support
Surveys and Questionnaires
statistics
electronics

Keywords

  • intellectual disabilities
  • death

Cite this

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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.",
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T1 - Communicating about death and dying with adults with intellectual disabilities (ID) who are terminally ill or bereaved: a UK-wide survey of ID support staff

AU - Tuffrey-Wijne, Irene

AU - Finlayson, Janet

AU - bernal, SJ

AU - Lam, Clare

AU - Todd, Stuart

AU - Taggart, Laurence

PY - 2020/1/28

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N2 - 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.

AB - 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.

KW - intellectual disabilities

KW - death

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