How to Break Bad News to People with Intellectual Disabilities is a poignant and thought inspiring guide for any professional, manager, support worker, friend or family member, who may need to break some “bad news”, to someone with an intellectual disability, at some point during their lives. Presenting a well-researched, real to life and contemporary overview of this topic area, it makes an important contribution to intellectual disability literature.
The book consists of 24 chapters and a set of appendices, divided into five parts. The first part powerfully outlines the background of the research, using relevant case study examples, explaining what it means, in non-technical language, to have an intellectual disability or an associated spectrum condition, and how these may impair an individual's understanding of the world. It effectively highlights the gaps in current models and illustrates the need for an expanded set of guidelines for a person with an intellectual disability and their circle of support.
Part two presents the author's model for “breaking bad news”, outlining the guidelines as being more of a process, rather than a discrete event in someone's life. Specifically, the model emphasises building a foundation of knowledge gradually over time, by delivering “chunks” of information when appropriate opportunities arise in an individual's life. Quotes within the book such as, “Every home visit was a contribution to breaking bad news and these were steps without words” urge the reader to carefully consider an individual's capacity to understand and make sense of the information being given, in the context of involving, not only the individual themselves, but acknowledging that a person's family and support teams also have a fundamental role to play in helping an individual come to terms with “bad news”.
The author also draws attention to the importance of not just explaining things in a plain and straightforward way that an individual with an intellectual disability is able to comprehend, but also guiding that person through a series of steps, unique to their capacities, which enables the person to make sense of the wider context of events surrounding them. The fourth component of the model delicately outlines the support needs of everyone involved and stresses consideration for all individuals that the bad news may impact, in various emotional and social ways.
Part Three, resonating deeply in person-centered values and factual information, provides a detailed account of how to apply the guidelines in practice, explaining how any individual who has contact with someone with an intellectual disability can contribute to the building up of an individual's knowledge base. The author critically evaluates the barriers to communicating effectively with an individual with severe communication impairments and commendably highlights how these often challenging situations may be overcome, by using the appropriate communication method, at the appropriate time, for the individual's specific receptive and expressive communication abilities.
Part Four presents three examples of how the model could be applied to various real life circumstances. It is emphasised here that no single individual in the person's environment is likely to have all the information needed to support the person through the process of receiving bad news. Rather, it often takes time and planning to establish an individual's framework of knowledge and an interdisciplinary approach to obtain the necessary information to effectively support the individual to receive a message that is likely to be difficult to process. Notably, this book also suggests that it is not just individuals with an intellectual disability who could be assisted in these ways; rather, this is a method of information delivery of potential benefit to the breaking of “bad news” more generally.
The book concludes by providing a useful set of appendices which give a brief overview of the author's guidelines and the Mental Capacity Act (England and Wales). The appendices also include ten guiding questions, a host of relevant communication resources, web sites and organisations that carers and professionals alike may find useful to further their knowledge in this area.
In summary, this book is most certainly a valuable read. The only words of caution are that some readers may just wish to have a box of tissues handy as the author is able to articulately convey the stark realities of the multifaceted challenges encountered in life by individuals with an intellectual disability and the exceptional team of people who support them. Nevertheless, this is a much needed, impressive and reflective guide which should inform best practice.
