Guidelines to ease breaking bad news to a person with an intellectual disability

A screen shot from the website

Our colleagues at the Down Syndrome Association in London recently recommended the new website, Breaking Bad News, developed specifically to guide anyone breaking bad news to a person with an intellectual disability.  Their Down2Earth group for adults with Down syndrome participated in the research that resulted in the website, and the book of the same name.

The website provides easy to understand guidelines, more detailed background information, and links to the research literature that informed it. The 'bad news' can be anything that the person with a disability is likely to view negatively, and the guidelines can be used in many situations.

How the guidelines came about:
The guidelines were developed by Dr Irene Tuffrey-Wijne and her team at St George’s University of London. Both during her clinical practice and in her research involving people with intellectual disabilities who were terminally ill, Irene noticed that issues around breaking bad news were worrying families, carers, professionals. ‘Should we tell him? What should we tell, how, and by whom?’ Professionals found that the models for breaking bad news that they used for other patients were of limited use when the patient had intellectual disabilities. Families, carers and paid care staff were anxious to help the person in the best possible way without causing undue distress, but often did not know how to go about this.

As a consequence, Irene conducted a two year study focusing exclusively on the issue of breaking bad news to people with intellectual disabilities. This involved focus group meetings and interviews with over 100 people across the UK, including people with intellectual disabilities, family carers, intellectual disability professionals and health care professionals (mostly doctors and nurses). Many of these participants also gave feedback on Irene’s draft guidelines for breaking bad news, and expressed a desire to have these guidelines publicly available and easily accessible. This website is the result.

Overview:

Ten top tips for breaking bad news 

• Unique and flexible guidelines that can be used by practitioners, families and carers to ease the process of breaking bad news to people with intellectual disabilities
• Guidelines are adaptable to individual communication ability and level of understanding
• Background information, explanations of the guidelines, practical tips and exercises
• Ideal learning resource for social care, medical, nursing and other healthcare students, as well as postgraduate professionals

From the testimonials page:

For families afraid of bad news being given bluntly, the guidelines have enabled me to show families how we are going to support their relative to understand information, and to reassure them that we would not arbitrarily give someone information they do not or cannot understand. We use the guidelines to build up someone’s knowledge.

I’ve started to use the guidelines in a number of different scenarios – with a someone in renal failure, building on concrete understanding of what is happening now; with a terminally ill client to try and help her understand what was happening, and to help her family come to terms with her prognosis; and more recently with a client who was in hospital, and needed to move home. The guidelines helped us to establish his level of comprehension, and the way in which his world works.

With the website and book, I am looking forward to taking the guidelines out into the multidisciplinary team, and to be able to provide them with the links and tools they need to use it.”Sue Marsden, Community Intellectual DisabilityTeam, UK