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How to Break Bad News to People with Intellectual Disabilities
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Table of Contents

Foreword by Professor Baroness Sheila Hollins. Section 1: Background. 1. Introduction. 2. Intellectual Disabilities. 3. What Is Bad News? 4. Breaking Bad News: Knowledge, Skill and Guidelines So Far. 5. Why We Need New Guidelines for Breaking Bad News. Section 2: Guidelines for Breaking Bad News. 6. Overview of the Guidelines. 7. Component 1: Building a Foundation of Knowledge. 8. Component 2: Understanding. 9. Component 3: People. 10. Component 4: Support. Section 3: Using the Guidelines. 11. How Can We Break the Knowledge Down into Chunks? 12. When Can We Start Building Knowledge? 13. Who Can Give Chunks of Knowledge? 14. Who Should Be Told? 15. How Much Can Someone with Intellectual Disabilities Understand? 16. Communicating with People with Intellectual Disabilities. 17. Can Someone Be Harmed By Receiving Too Much Information? 18. Sudden Bad News. 19. What If People Disagree about Breaking Bad News? 20. Some Further Advice. Section 4: Examples of the Model in Practice. 21. Introduction to the Examples. 22. Example A: Jeremy and Christine have cancer. 23. Example B: Ahmed and Carol have to move. 24. Example C: Moira, Ben and Isabel's friend has dementia. Section 5: Appendices. Appendix 1: Flow Chart: A One-Page Overview. Appendix 2: Ten Guiding Questions. Appendix 3: The Mental Capacity Act. Appendix 4: Resources. References.

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A unique and flexible guide to how best to break bad news to people with intellectual disabilities

About the Author

Irene Tuffrey-Wijne qualified as a nurse in Amsterdam, and moved to the UK in 1985. She holds a first degree in Palliative Care Nursing and completed a PhD in the palliative care of people with intellectual disabilities at Maastricht University, The Netherlands. Irene has extensive clinical experience in the fields of both intellectual disabilities (as a support worker and home manager) and palliative care (as a clinical nurse specialist at a hospice). She now works as a Senior Research Fellow at St George's University of London, leading a programme of research aimed at improving health care and end of life care for people with learning disabilities. She is chair of the Palliative Care for people with Learning Disabilities Network. She is also author of Living with Learning Disabilities, Dying with Cancer and lives in London with her husband and three children.

Reviews

This is an excellent book. It is thought provoking, and well-structured. It enables the reader to develop better insights into the impact of receiving bad news, not just for people with learning disabilities, but also in mainstream life. It deserves a place on everyone's bookshelf. -- Bereavement Care
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...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. -- Baroness Sheila Hollins, Professor of the Psychiatry of Learning Disability at St George's, University of London, and a crossbench life peer in the House of Lords
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 client's 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 -Wijne's research

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