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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
Author(s) -
TuffreyWijne Irene,
Finlayson Janet,
Bernal Jane,
Taggart Laurence,
Lam Claire Kar Kei,
Todd Stuart
Publication year - 2020
Publication title -
journal of applied research in intellectual disabilities
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.056
H-Index - 63
eISSN - 1468-3148
pISSN - 1360-2322
DOI - 10.1111/jar.12714
Subject(s) - intellectual disability , terminally ill , quarter (canadian coin) , psychology , descriptive research , medicine , psychiatry , nursing , gerontology , palliative care , statistics , mathematics , archaeology , history
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.