Irene Tuffrey-Wijne1, Janet Finlayson2, Jane Bernal3, Laurence Taggart4, Claire Kar Kei Lam1, Stuart Todd3. 1. Faculty of Health, Social Care and Education, Kingston University & St George's, University of London, London, UK. 2. Glasgow Caledonian University, Glasgow, UK. 3. University of South Wales, Pontypridd, UK. 4. University of Ulster, Newtownabbey, UK.
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.
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.
Authors: Martin Viola; Robert Tyler Braun; Elizabeth A Luth; Cynthia X Pan; Lindsay Lief; James Gang; Zara Adamou; Philip Dodd; Holly G Prigerson Journal: J Palliat Med Date: 2022-04-18 Impact factor: 2.947