Does Talking about End of Life with Adults with Intellectual Disability Cause Emotional Discomfort or Psychological Harm?

Autor/inn/en	Stancliffe, Roger J.; Wiese, Michele Y.; Read, Sue; Jeltes, Gail; Barton, Rebecca; Clayton, Josephine M.
Titel	Does Talking about End of Life with Adults with Intellectual Disability Cause Emotional Discomfort or Psychological Harm?
Quelle	In: Journal of Applied Research in Intellectual Disabilities, 34 (2021) 2, S.659-669 (11 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Stancliffe, Roger J.) ORCID (Wiese, Michele Y.) ORCID (Barton, Rebecca) ORCID (Clayton, Josephine M.)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1360-2322
DOI	10.1111/jar.12835
Schlagwörter	Adults; Intellectual Disability; Emotional Response; Discussion; Activities; Caregivers; Death; Fear; Anxiety; Depression (Psychology) + Suchen Sie Ihr Suchwort? Intellect; Disability; Disabilities; Verstand; Behinderung; Emotionales Verhalten; Diskussion; Caregiver; Carer; Betreuungsperson; Pfleger; Sterbefall; Tod; Todesfall; Furcht; Angst
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. (As Provided).
Anmerkungen	Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01