Sue Read - Supporting People with Intellectual Disabilities Experiencing Loss and Bereavement

Personally and professionally loss and bereavement present us with challenges not least acknowledging our common human responses, whilst at the same time recognising individual experiences. In presenting theory and exploring its application to individualised support this book responds to this challenge making a timely and helpful contribution to supporting people with intellectual disabilities in an often neglected area of practice.

Ruth Northway, Professor of Learning Disability
Nursing, University of South Wales

Loss and death are inescapable parts of lifes rich tapestry; and it is a sad reality that people with intellectual disabilities are often excluded from exploring sensitive issues that surround loss and death. This is why, for me, this book is so valuable, for we are slowly but surely moving to a new era as to how this group of people make sense of loss and death and how we can support them. Through a series of well-constructed chapters that consolidate issues surrounding loss for people with intellectual disabilities, the book moves on to provide a unique evidence-based text that will be of considerable value to all those who work with people with intellectual disabilities, so that they might be helped to better understand loss and death as inescapable parts of life; in much the same ways as other citizens. The editor has successfully brought together a range of eminent and authoritative contributors who present a range of issues from the broad based nature of loss, particularly in relation to this population, and the contextual nature of appropriate care and support. I believe that this ground breaking and unique book will be of considerable value as a resource to practitioners and students alike who seek to support people with intellectual disabilities with compassion through their experiences of loss.

Bob Gates, Professor of Learning Disabilities, University of West
London, Institute for Practice, Interdisciplinary Research and Enterprise
(INSPIRE), Editor of the British Journal of Learning
Disabilities, Emeritus Professor, the Centre for Learning Disability Studies,
University of Hertfordshire, and Honorary Professor of Learning
Disabilities, Hertfordshire Partnership University NHS Foundation Trust

This work, edited by Professor Read, does not shrink from addressing challenging topics including a persons sense of being deprived of rights and journeying through lifes transitions. Some journeys are planned while others are unexpected or unwelcome, but all need to be sensitively addressed. Every health, social and educational professional/carer should read this text so as to be able to effectively support people with intellectual disabilities through life defining and shaping times.

Jim Blair, Consultant Nurse Intellectual Disabilities, Great
Ormond Street Hospital, Associate Professor Kingston and
St. Georges Universities, and BILD Health Advisor

of related interest

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ISBN 978 1 84905 020 3

eISBN 978 0 85700 363 8

How to Break Bad News to People with Intellectual Disabilities

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Autism and Loss

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Living with Learning Disabilities, Dying with Cancer

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ISBN 978 1 84905 027 2

eISBN 978 0 85700 200 6

Intellectual Disability and Dementia

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Edited by Karen Watchman

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SUPPORTING PEOPLE
with INTELLECTUAL
DISABILITIES
EXPERIENCING LOSS
and BEREAVEMENT

Theory and Compassionate Practice

E DITED BY S UE R EAD

F OREWORD BY O WEN B ARR

Jessica Kingsley Publishers
London and Philadelphia

Epigraph (p.15 and 48), copyright G. Bonanno 2009, reprinted with permission of Basic Books, a member of the Perseus Books Group. FICA Spiritual History (p.73), copyright C. Puchalski 1996, reprinted with permission of C Puchalski. Table 5.1, copyright G Fitchett 2002, reprinted with permission of Academic Renewal Press. Fig. 5.1, copyright J Manson 2012, reprinted with permission of J Manson. Fig. 6.1 and Case Study (p.88), copyright H Priest 2012, adapted with permission of Routledge/Taylor and Francis Group. Epigraph (p.104), copyright J. Light, reprinted with permission of Informa Healthcare. Perceptions of a Grandaughter, copyright E Jennings, reprinted with permission of David Higham Associates Limited. Figs 18.2 and 18.2a, copyright S Read, reprinted with permission of Quay Books.

First published in 2014

by Jessica Kingsley Publishers

73 Collier Street

London N1 9BE, UK

and

400 Market Street, Suite 400

Philadelphia, PA 19106, USA

www.jkp.com

Copyright Sue Read 2014

Foreword copyright Owen Barr 2014

All rights reserved. No part of this publication may be reproduced in any material form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner except in accordance with the provisions of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, Saffron House, 610 Kirby Street, London EC1N 8TS. Applications for the copyright owners written permission to reproduce any part of this publication should be addressed to the publisher.

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Library of Congress Cataloging in Publication Data

A CIP catalog record for this book is available from the Library of Congress

British Library Cataloguing in Publication Data

A CIP catalogue record for this book is available from the British Library

ISBN 978 1 84905 369 3

eISBN 978 0 85700 726 1

This book is dedicated to my sister, Lynn.

Mother, wife, daughter, sister, aunt, nurse and friend to so many. The first
link in our sibling chain is irretrievably broken, and somehow it just feels
like the family will never be the same again. Sleep well til next time...

Contents

Owen Barr, Head of School of Nursing, University of Ulster

Sue Read, Professor of Learning Disability Nursing, School of Nursing and Midwifery, Keele University, UK

Sue Read

Sue Read and Mary Carr, member of Reach in Stoke on Trent, UK

Sue Read

Philip Dodd, Consultant Psychiatrist/Director of Psychiatry, St. Michaels House, Ireland and Noelle Blackman, CEO of Respond and Research Fellow at the University of Hertfordshire, UK

William Gaventa, Director of Community and Congregational Supports, Elizabeth Boggs Centre on Development Disabilities and Associate Professor at UMDNJ-Robert Wood Johnson Medical School, Georgia, USA