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

Irene Tuffrey-Wijne*, Janet Finlayson, Jane Bernal, Laurence Taggart, Claire Kar Kei Lam, Stuart Todd

*Corresponding author for this work

Research output: Contribution to journalArticle

Abstract

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.
Original languageEnglish
Pages (from-to)927-938
Number of pages12
JournalJournal of Applied Research in Intellectual Disabilities
Volume33
Issue number5
Early online date18 Feb 2020
DOIs
Publication statusPublished - Sep 2020

Keywords

  • bereavement
  • breaking bad news
  • communication
  • death and dying
  • intellectual disabilities
  • truth disclosure

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