Writing is part of my job.
A researcher needs to write reports, as well as a constant stream of academic articles in learned journals. But that has never satisfied me, because it is probably only read by people who like to use very long words and even longer sentences.
That excludes most of the people who are the focus of my research: people with intellectual disabilities, their families, and the people who support them. What is the point of doing research, if it cannot be accessed and used by the people who need to hear about it?
Much of my writing is about the needs and experiences of people with intellectual disabilities who are confronted with issues around ill health, cancer, death and dying.
I see this as my task:
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A researcher needs to write reports, as well as a constant stream of academic articles in learned journals. But that has never satisfied me, because it is probably only read by people who like to use very long words and even longer sentences.
That excludes most of the people who are the focus of my research: people with intellectual disabilities, their families, and the people who support them. What is the point of doing research, if it cannot be accessed and used by the people who need to hear about it?
Much of my writing is about the needs and experiences of people with intellectual disabilities who are confronted with issues around ill health, cancer, death and dying.
I see this as my task:
- to help people with intellectual disabilities understand what is happening to them, or to their family and friends
- to help us all understand what it is like to have intellectual disabilities and to face such major life events - and to help us know how we can provide help and support
Therefore, as well as all my academic writing, I have (co-)written some books that use much more sensible language... (or, in the case of Books Beyond Words, no language at all!)
The full list of all my publications can be found here.
Getting on with cancer Veronica Donaghey, Jane Bernal, Irene Tuffrey-Wijne and Sheila Hollins, illustrated by Beth Webb (2002)
The full list of all my publications can be found here.
Books Beyond Words are resources for people who find it easier to use pictures than words. The books use pictures that engage and empower people, on a wide range of themes including health, cancer, dying and bereavement.
This book was produced for people with intellectual disabilities, but it also helped my younger daughter to understand what was happening to me.
"This book is based on the true story of Veronica Donaghey, a woman with Down syndrome. When Veronica's doctor told her she had cancer, she was confused and frightened. Then he told her that some cancers can be cured. The pictures show Veronica as she goes through surgery, radiotherapy and chemotherapy. The book deals honestly with the unpleasant side of treatment and ends on a positive note. It is designed to be used as a counselling tool by anyone working with people who have both intellectual disabilities and cancer. It can also be used to help explain what is happening. The pictures help people to ask questions or share their concerns.
Getting on with cancer will also be valuable for other client groups who may find that pictures help them to understand."
This book is based on my research, described in "Living with learning disabilities, dying with cancer" (see below). The story in the book is a 'best practice scenario', based on a compilation of the positive experiences of people with intellectual disabilities who were dying of cancer.
"This book tells the story of John, who has a terminal illness and is dying. The pictures follow him in his illness and his final days. The book deals with physical deterioration and the emotional aspects of dying in an honest and moving way. It book is designed to help the reader make sense of what is happening to them or to someone they know who is ill. The pictures help them to ask questions or share their concerns."
Living with learning disabilities, dying with cancer: thirteen personal stories Irene Tuffrey-Wijne (2010)
The research on which this book is based has truly influenced my current personal cancer experience. Now that I am going through cancer myself, the people in this book keep coming back to me...
The research on which this book is based has truly influenced my current personal cancer experience. Now that I am going through cancer myself, the people in this book keep coming back to me...
"This book is a powerful and moving account of the experiences of 13 people with learning disabilities who were living with cancer. The author followed their lives as part of a 3-year research study, during which 10 people died. She spent extensive periods of time with them at their homes and day centres, in hospitals, hospices and nursing homes. In doing so, she gained a unique understanding of what it is like for individuals with learning disabilities to live with deteriorating health and how this may impact upon their families, friends and carers. How was each person's cancer diagnosed? How was their cancer and its implications explained to them? How much did they understand and how did they cope with treatment? What happened when they were dying? In answering these questions, the book exposes the suffering of people with learning disabilities at the end of their lives, but also their remarkable resilience and strength. In an optimistic final chapter, the author demonstrates how people with learning disabilities can best be supported at the end of life.
This book will be an invaluable resource for anyone involved in the care and support of people with learning disabilities who have cancer and who are dying, including health and social care professionals, families and friends."
This book will be an invaluable resource for anyone involved in the care and support of people with learning disabilities who have cancer and who are dying, including health and social care professionals, families and friends."
How to break bad news to people with intellectual disabilities: a guide for carers and professionals Irene Tuffrey-Wijne (2013)
The research and writing I have done around breaking bad news has taken on a whole new perspective, now that I am on the receiving end of bad news!
The research and writing I have done around breaking bad news has taken on a whole new perspective, now that I am on the receiving end of bad news!
"This book offers unique and flexible guidelines that can be used by practitioners to ease the process of breaking bad news to people with intellectual disabilities. The guidelines, which are adaptable to individual communication ability and level of understanding, address the many complex needs of people with intellectual disabilities who can find understanding and accepting news that has a negative impact on their life a very difficult task. In the book, Irene Tuffrey-Wijne covers a range of different types of bad news, from bereavement and illness to more minor issues such as a change of accommodation, and offers highly practical and effective tips that will help carers and practitioners ensure that bad news is relayed as sensitively and successfully as possible.
An easy-to-use and comprehensive guide, this book will be an invaluable resource of information for carers, health professionals such as doctors and nurses as well as families of people with intellectual disabilities."
The Dutch translation of the above book...
"Slecht nieuws krijgen is niet leuk, slecht nieuws vertellen ook niet. Maar dat mag geen excuus zijn om mensen met een verstandelijke beperking informatie te onthouden over belangrijke gebeurtenissen in hun leven. Het kan gaan om familieleden die overlijden, begeleiders die ergens anders gaan werken, ziekte in het eigen lichaam of gewoon een vakantie die niet doorgaat. De vraag is: hoe vertel je dit aan mensen die een ander begripsvermogen hebben en vaak een minder ontwikkeld tijdsbesef? En wie moet het eigenlijk vertellen?
Irene Tuffrey-Wijne ontwikkelde een leidraad die ze onder andere baseerde op de ervaringen van ruim honderd mensen met en zonder verstandelijke beperking die deelnamen aan haar onderzoek. Ze laat zien hoe je belangrijke informatie begrijpelijk kunt maken door haar op te delen in kleine stukjes, waarbij je bewust kunt kiezen wanneer je wat vertelt. Ze vindt het belangrijk dat alle mensen die een rol spelen in het leven van iemand met een verstandelijke beperking betrokken worden bij de situatie. En ze wijst erop dat er onder hen mensen kunnen zijn die zelf ook getroffen worden door het slechte nieuws, bijvoorbeeld als een gezamenlijke ouder overlijdt. De ondersteuning zou zich daarom ook op hen moeten richten.
Het boek is bedoeld voor zowel professionals als voor familieleden en andere betrokkenen bij het wel en wee van mensen met een verstandelijke beperking."
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