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Supporting end of life decision making: Case studies of relational closeness in supported decision making for people with severe or profound intellectual disability
Author(s) -
Watson Joanne,
Wilson Erin,
Hagiliassis Nick
Publication year - 2017
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.12393
Subject(s) - intellectual disability , closeness , psychology , relevance (law) , making of , preference , social psychology , political science , management , mathematical analysis , mathematics , psychiatry , law , economics , microeconomics
Background The United Nations Convention on the Rights of Persons with Disabilities ( UNCRPD ) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions. Methods Five people with severe or profound intellectual disability's experiences of supported decision making were examined. This article is particularly focused on one participant's experiences at the end of his life. Results All five case studies identified that supporters were most effective in providing decision‐making support for participants when they were relationally close to the person and had knowledge of the person's life story, particularly in relation to events that demonstrated preference. Conclusions Findings from this study provide new understandings of supported decision making for people with severe or profound intellectual disability and have particular relevance for supporting decision making at the end of life.