Perceptions and knowledge of stroke among surviving patients with stroke and their carers

As part of a survey to collect data which would be useful in planning a district stroke service we set out to discover what the service users' (patients' and carers') perceptions and knowledge of their illness were. We prospectively identified 164 consecutive patients with acute stroke admitted to hospital. Of the 110 (67%) survivors 65 (59%) patients and 80 (73%) carers completed a semi-structured interview. Most (46, 71%) patients and (68, 85%) carers thought they understood what a stroke was but 14 (22%) patients and 12 (15%) carers did not differentiate between a 'stroke' and a 'heart attack'. Carers were significantly more likely than patients to want know all the details about the patients' condition and treatment, to discuss the risk of recurrence, to receive written information and to join information groups. They were more likely than patients to feel that they had to ask for information, yet they were better able to identify general risk factors for stroke. Many patients and carers want more information and discussion about their illness and treatment during their hospital stay, however, some do not. Therefore information giving must be considered on an individual basis. Information could be delivered by: increasing available literature, voluntary group meetings, Stroke Family Care Officers and audio-visual information packages. The most efficient way of achieving an increased understanding amongst patients and carers needs to be found.