Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm?. Issue 2 (18th November 2020)

• Record Type: Journal Article
• Authors: Stancliffe, Roger J.; Wiese, Michele Y.; Read, Sue; Jeltes, Gail; Barton, Rebecca; Clayton, Josephine M.
• Is Part Of: Journal of applied research in intellectual disabilities. Volume 34:Issue 2(2021)
• Page Start: 659
• Page End: 669
• Publication Date: 2020-11-18
• Subjects: anxiety -- depression -- discomfort -- end of life -- fear of death -- intellectual disability; Learning disabilities -- Periodicals; Mental retardation -- Periodicals; Learning disabled -- Periodicals; People with mental disabilities -- Periodicals; 616.85880072
• DOI: 10.1111/jar.12835
• Languages: English
• ISSNs: 1360-2322

Abstract

Abstract: Background: Caregivers often avoid involving people with intellectual disability in end‐of‐life discussions and activities. One reason is fear that the person may become upset or psychologically harmed. Methods: Pre and post a 6‐month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention ( n = 24) and comparison ( n = 20) participants with intellectual disability. End‐of‐life 'encounters' (conversations/activities about end of life) were monitored, including comfort ratings. Results: Overall, 79% of encounters were rated very comfortable/somewhat comfortable. Participants initiated 69% of encounters. There was no significant pre–post change in depression or fear of death. Anxiety improved significantly. Conclusions: This is the first controlled, longitudinal study providing robust evidence about whether discussing end of life leads to emotional discomfort or psychological harm. Data showed adults with intellectual disability can safely engage in conversations/activities about end of life. The high percentage of participant‐initiated encounters showed participants wanted to talk about end of life.