Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm?

Author(s)
Roger Stancliffe, Michele Y Wiese, Sue Read, Gail Jeltes, Rebecca Barton, Josephine Clayton

Journal of Applied Research in Intellectual Disabilities

Description

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.

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Suggested Citation

Stancliffe, R., Wiese, M., Read, S., Jeltes, G., Barton, R., & Clayton, J. (2020). Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm? Journal of Applied Research in Intellectual Disabilities. Retrieved from https://www.researchgate.net/publication/347033418_Does_talking_about_end_of_life_with_adults_with_intellectual_disability_cause_emotional_discomfort_or_psychological_harm

Details

Date
12/17/2020 
Type
Peer-reviewed article 
Contact
Roger Stancliffe To read the full-text of this research, you can request a copy directly from the authors at roger.stancliffe@sydney.edu.au or 61-2-9351-9984 (Australia)
Publisher
British Institute of Learning Disabilities