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

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Abstract

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.
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 - 7 Aug 2020

Keywords

  • Intellectual disabilities
  • truth disclosure
  • breaking bad news
  • communication
  • Death and dying
  • bereavement

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