Experience of End-of-Life Issues by People with Intellectual Disability

Roger J. Stancliffe; Michele Y. Wiese; Philip McCallion; Mary McCarron

doi:10.1007/978-3-030-98697-1_2

Experience of End-of-Life Issues by People with Intellectual Disability

Roger J. Stancliffe, Michele Y. Wiese, Philip McCallion, Mary McCarron

Institute on Community Integration

Research output: Chapter in Book/Report/Conference proceeding › Chapter

Abstract

This chapter examines contemporary research about end of life with a particular emphasis on people with intellectual disabilities and their experiences, rather than the views of others such as caregivers and clinicians. Topics include their experiences when family or friends die, and engagement with their own dying and death. The extent to which people with intellectual disability actively participate in research about the end of life is critiqued. Available measurement instruments are examined, concluding with the need to move beyond interpreting their views via the proxy report of others. The chapter concludes with a reflection scenario and questions, challenging the reader to consider how end-of-life experiences of people with intellectual and developmental disability could and should be better approached.

Original language	English (US)
Title of host publication	End of Life and People with Intellectual and Developmental Disability
Subtitle of host publication	Contemporary Issues, Challenges, Experiences and Practice
Publisher	Springer International Publishing
Pages	28-57
Number of pages	30
ISBN (Electronic)	9783030986971
ISBN (Print)	9783030986964
DOIs	https://doi.org/10.1007/978-3-030-98697-1_2
State	Published - Jan 1 2022

Bibliographical note

Publisher Copyright:
© The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2022.

Keywords

Death
Death of others
Dying
End of life
Intellectual and developmental disabilities
Intellectual disability
Measurement instruments
Own death
Participation
Self-report

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10.1007/978-3-030-98697-1_2

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Experience of End-of-Life Issues by People with Intellectual Disability. / Stancliffe, Roger J.; Wiese, Michele Y.; McCallion, Philip et al.
End of Life and People with Intellectual and Developmental Disability: Contemporary Issues, Challenges, Experiences and Practice. Springer International Publishing, 2022. p. 28-57.

Research output: Chapter in Book/Report/Conference proceeding › Chapter

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Experience of End-of-Life Issues by People with Intellectual Disability

Abstract

Bibliographical note

Keywords

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