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Palgrave Macmillan

End of Life and People with Intellectual and Developmental Disability

Contemporary Issues, Challenges, Experiences and Practice

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  • © 2022

Overview

  • Presents cutting-edge research, leading world experts on end of life and intelligent and developmental disability
  • Offers quality implementation resources, to inform researchers, practitioners and families
  • Includes real-world personal end-of-life stories to ground the issues in lived experience

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Table of contents (18 chapters)

Keywords

About this book

This book on end of life examines how to include people with intellectual and developmental disability in the inevitability of dying and death. Comprising 17 chapters, it addresses challenging and under-researched topics including suicide, do-not-resuscitate, advance care planning, death doulas and accessible funerals. Topics reflect everyday community, palliative care, hospice and disability services.


The book proposes that the rights of people with disabilities should be supported up to and after their death. Going beyond problem identification, the chapters offer positive, evidence-supported responses that translate research to practice, together with practice examples and resources grounded in lived experience. The book is applicable to readers from the disability field, and mainstream health professionals who assist people with disability in emergency care, palliative care or end-of-life planning

Editors and Affiliations

  • Centre for Disability Research and Policy, University of Sydney, Sydney, Australia

    Roger J. Stancliffe

  • School of Psychology, Western Sydney University, Penrith, Australia

    Michele Y. Wiese

  • School of Social Work, Temple University, Philadelphia, USA

    Philip McCallion

  • Trinity Centre for Ageing and Intellectual Disability, Trinity College Dublin, Dublin, Ireland

    Mary McCarron

About the editors

Roger J. Stancliffe, PhD FAAIDD FIASSIDD is Professor Emeritus, University of Sydney, Australia. His research aims to make a difference in the lives of people with intellectual disability. He co-edited a special journal issue on end-of-life, is past editor of the Journal of Intellectual & Developmental Disability, and received the AAIDD Research Award.

 

Michele Y. Wiese, PhD MAPS FASID is Adjunct Fellow, School of Psychology, Western Sydney University, Australia. She is also Honorary Senior Research Fellow at the University of Sydney, and Fellow of the Australasian Society of Intellectual Disability. Dr Wiese is consulting editor to three international peerreviewed journals.

 

Philip McCallion, PhD ACSW FAASWSW FIASSIDD FGSA Director/Professor, School of Social Work, Temple University focuses on caregiver support, dementia, palliative care and service systems. He is cofounder/ co-principal investigator/coapplicant of the Intellectual Disability Supplement to the Irish Longitudinal Study on Aging; and National Consultant on Intellectual Disabilities and Dementia, U.S. National Alzheimer’s and Dementia Resource Center.

Mary McCarron, PhD MA BNS RNID RGN FTCD is Professor of Ageing and Intellectual Disability at Trinity College University of Dublin, Ireland, and Executive Director of the Trinity Centre for Ageing and Intellectual Disability and the National Intellectual Disability Memory Clinic. She is Principal Investigator of The Intellectual Disability to the Irish Longitudinal Study on Ageing- IDS TILDA, and has led extensive longitudinal research in Ireland and internationally on ageing, dementia and end-of-life issues for people with an intellectual disability.

Bibliographic Information

  • Book Title: End of Life and People with Intellectual and Developmental Disability

  • Book Subtitle: Contemporary Issues, Challenges, Experiences and Practice

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

  • DOI: https://doi.org/10.1007/978-3-030-98697-1

  • Publisher: Palgrave Macmillan Cham

  • eBook Packages: Behavioral Science and Psychology, Behavioral Science and Psychology (R0)

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

  • Hardcover ISBN: 978-3-030-98696-4Published: 12 June 2022

  • Softcover ISBN: 978-3-030-98699-5Published: 12 June 2023

  • eBook ISBN: 978-3-030-98697-1Published: 11 June 2022

  • Edition Number: 1

  • Number of Pages: XXXIV, 519

  • Number of Illustrations: 3 b/w illustrations, 1 illustrations in colour

  • Topics: Applied Psychology, Disability Studies, Palliative Medicine, Developmental Psychology, Social Work

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