Tuffrey-Wijne, Irene (2013) A new model for breaking bad news to people with intellectual disabilities. Palliative Medicine, 27(1), pp. 5-12. ISSN (print) 0269-2163

Abstract

OBJECTIVES: To develop a model for breaking bad news that meets the needs of people with intellectual disabilities (IDs). DESIGN: A two-phase qualitative study featuring: (I) focus group meetings, on-line focus groups and one-to-one interviews; (II) structured feedback from participants and other stakeholders. SETTING: Participants were drawn from National Health Service hospitals, Primary Care Trusts, independent organisations and on-line forums across England. PARTICIPANTS: 109 participants were purposively selected: 21 people with mild/moderate IDs, 28 family carers, 26 ID professionals and 34 general health professionals. OUTCOME MEASURE: Feedback on a preliminary model for breaking bad news to people with IDs was collected from 60 participants and other stakeholders to assess relevance and acceptability, before the model was finalised. RESULTS: Breaking bad news is best seen as a process, not an event or a linear series of events. Bad news situations usually constitute a wide range of discrete items or chunks of information. 'Building a foundation of knowledge' is central to the model. Information needs to be broken down into singular chunks of knowledge that can be added over time to people's existing framework of knowledge. Three other aspects should be considered at all times: capacity, people and support. CONCLUSIONS: Patients who have IDs do not easily process verbal information in a clinical setting. The new model for breaking bad news to people with IDs needs to be tested in practice using robust outcome measures. The model's relevance to wider patient groups should also be evaluated.

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