Irene Tuffrey-Wijne - How to Break Bad News to People with Intellectual Disabilities

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I found this book a pleasurable read, despite the delicate subject matter. It is clearly written and is full of examples that are instantly recognisable in my daily practice. The book highlights the importance of helping clients understand bad news situations regardless of their level of intellectual disability, and proves how including a clients support network in the process can be crucial in ensuring that bad news is successfully relayed. Practical and easily accessible, this book finally provides us with a set of solid guidelines to support our practice!

Marja Oud, palliative care lead and unit manager in a residential facility for people with intellectual disabilities, Netherlands

As a parent, I wish I had been able to use this book by Dr Irene Tuffrey-Wijne when my daughter was slowly dying. Her guidelines are realistic, reassuring and rooted in a deep understanding of the highly individual needs of people with intellectual disabilities. It makes total sense to me that breaking bad news is a process, not an event. It demonstrates that it is possible to support someone with intellectual disabilities to come to terms with painful issues.

Jan Sunman, parent carer and participant in Dr Irene Tuffrey-Wijnes research

How to Break Bad News to People with Intellectual Disabilities

A Guide for Carers and Professionals

Irene Tuffrey-Wijne

Foreword by Professor Baroness Sheila Hollins

Jessica Kingsley Publishers

London and Philadelphia

First published in 2013

by Jessica Kingsley Publishers

116 Pentonville Road

London N1 9JB, UK

and

400 Market Street, Suite 400

Philadelphia, PA 19106, USA

www.jkp.com

Copyright Irene Tuffrey-Wijne 2013

Foreword copyright Professor Baroness Sheila Hollins 2013

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.

Warning: The doing of an unauthorised act in relation to a copyright work may result in both a civil claim for damages and criminal prosecution.

Library of Congress Cataloging in Publication Data

Tuffrey-Wijne, Irene, 1963-

How to break bad news to people with intellectual disabilities : a guide for careers and professionals /

Irene Tuffrey-Wijne ; foreword by professor Baroness Sheila Hollins.

p. cm.

Includes bibliographical references and index.

ISBN 978-1-84905-280-1 (pbk. : alk. paper) -- ISBN 978-0-85700-583-0 (electronic text) 1. People with

mental disabilities. 2. Interpersonal communication. 3. Bad news. 4. Communication. I. Title.

HV3004.5.T84 2012

362.3014--dc23

201201430

British Library Cataloguing in Publication Data

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

ISBN 978 1 84905 280 1

eISBN 978 0 85700 583 0

Converted to eBook by EasyEPUB

Foreword

Irene Tuffrey-Wijne has written a thoroughly researched and clinically sound primer on how to break important, life-changing news to people with intellectual disabilities, including those on the autistic spectrum. Irene sets the scene by reminding us of the extra communication challenges facing people with intellectual disabilities and all of us who care about and for them. She explains the limitations of existing bad news protocols for this group of people, and I think rather subtly succeeds in showing that something that works better for people with intellectual disabilities will probably work better for most other people too!

She debunks common myths and assumptions, and deftly turns these into the foundation stones for her new guidelines. Her advice to identify the right-sized chunks of information for each person to build knowledge and increase decision-making capacity is deceptively simple. Of course building a good enough map of someones information needs will require collaboration between family, staff and professionals, and in working together to do this the basis of a multidisciplinary care plan will be created too. She gives helpful worked examples of preparing people with different communication needs for different life-changing decisions.

All of us who provide support to people with these developmental cognitive disabilities will learn a great deal. This is a wise book deeply embedded in scholarly research and direct patient care, and I commend it to everyone concerned about someone with intellectual disability and their future. Moreover, I predict that Irenes ground-breaking guidelines will have a profound influence beyond Irenes own immediate current field of practice.

Professor Baroness Sheila Hollins

House of Lords, London

Acknowledgements

A book of this nature cannot be written by one person in isolation. The ideas presented here are the result of seven years of research and reflection. The research included the Veronica Project (a study of the experiences of people with intellectual disabilities who had cancer, published by Jessica Kingsley Publishers in 2010) and then, more specifically, a two-year study that focused on how to break bad news. Around two hundred people have taken part in my research over these seven years, including people with intellectual disabilities, families, friends, paid care staff, doctors and nurses in hospitals and hospices, and nurses and other professionals in intellectual disability services. They cannot be named individually, but they were crucial in helping me develop my understanding. Many of these participants shared deeply personal and often painful experiences, and I am grateful for their generosity and trust. I hope this book does them justice.

There are other un-named contributors. New knowledge emerges through listening to and discussing with others, and there have been numerous people who have inspired and guided me: friends; colleagues; people attending my teaching sessions, workshops and conference presentations.

I am very grateful to the Bupa Foundation for funding the research that underpins this book. They were extremely supportive throughout, accommodating my need to take time out when bad news situations overtook my personal life. Simultaneously, Macmillan Cancer Support funded a study of the experiences of people with intellectual disabilities who had a relative or friend with cancer; that study, too, contributed to the development of my guidelines for breaking bad news.

My research team at St Georges, University of London, was invaluable. Niki Giatras gave support with the focus groups and managing the data. Gary Butler and Amanda Cresswell co-facilitated the focus groups with people with intellectual disabilities; these two colleagues, who have intellectual disabilities themselves, not only added crucial insights but also enabled participants with intellectual disabilities to contribute more fully. Sheila Hollins provided supervision: gentle, wise and always encouraging. Jane Bernal has helped me put my ideas into words for over a decade, often challenging and thought-provoking, always down to earth, relevant and with a lightness of touch. Her input on mental capacity has been particularly useful.

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