Introduction Current models for breaking bad news are inadequate in meeting the needs of people with learning disabilities (LD). People with LD are often not told of a life-limiting diagnosis. The task of breaking bad news is often left to carers who are poorly prepared and supported to cope with this.
Aims To explore how people with LD understand and communicate about illness. To explore the experiences and preferences of people with LD, families and professionals around breaking bad news. To identify the factors that affect breaking bad news to people with LD.
Methods 109 participants took part in nine one-to-one interviews and 13 focus groups (including three on-line groups) across England. Participants included people with LD (21), family carers (28), LD professionals (26), general health professionals (33) including cancer and palliative care nurse specialists and physicians (GPs and palliative care consultants).
Results People with LD have wide-ranging views about whether and how they want to be told bad news. Both LD and healthcare professionals lack confidence in communicating bad news to people with LD. Many family carers want to protect people with LD from bad news. Bad news should be given in chunks, depending on the person's abilities and needs. All those around the person with LD can and should contribute to this. Most people with LD make sense of bad news within their social context, rather than in a doctor's office.
Discussion Rather than ‘breaking bad news’, the key is to help someone understand and cope with a changing situation. This is a gradual process. A new model for breaking bad news to people with LD has been produced and will be presented as a poster.
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