Breaking bad news to people with intellectual disabilities

Categories: Care.

The guidelines, which have been designed to be used by practitioners, families and carers, are flexible and can be adapted to an individual’s communication ability and level of understanding. They address the many complex needs of people with intellectual disabilities, including the needs of people who have no clear sense of future, or who have difficulty understanding abstract concepts.

A website and book have been launched to accompany the guidelines. The book explains the guidelines in further detail and covers a range of different types of bad news, from bereavement and illness to more minor issues such as a change of accommodation. The website also provides background information, explanations of the guidelines, practical tips and exercises. There are also three videos on the website:

  • Dr Irene Tuffrey-Wijne discussing the need for these guidelines
  • Amanda Cresswell, who has intellectual disabilities, talking about what it was like for her when her mum died and when she herself was diagnosed with cancer
  • Gary Butler, who has intellectual disabilities and is a member of the research team that developed the new guidelines, reflecting on some of the research findings.

Dr Tuffrey-Wijne has a nursing background, with clinical experience in intellectual disability services and in palliative care nursing. She is a senior research fellow at St George’s University of London and Chair of the PCPLD.

Jason Davidson, a senior hospice social worker, said: “I really like these guidelines. They are easy enough to understand without being patronising. It has a direct no nonsense feel to it. I look forward to sharing this with the palliative care doctors I work with. I think all ward staff, including healthcare assistants and domestic staff, would benefit from some training or workshops on this.”

For more information see the Breaking Bad News website. The book, ‘How to break bad news to people with intellectual disabilities’, is published by Jessica Kingsley Publishers.

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