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

Age and Ageing, July, 1994 by Ian Wellwood, Martin S. Denis, Charles P. Warlow

Summary

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 patient's 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.

Introduction

The King's Fund Consensus on Treatment of Stroke recommended that stroke patients and their carers are 'entitled to a clear account of the nature and causes of their stroke' as part of their management (1). A good knowledge of stroke care in carers may improve the quality of discharge home from hospital in stroke patients (2), and carers' knowledge of illness or disability has been identified by rehabilitation nurses as an important factor in deciding whether carers can participate in the rehabilitation process whilst the patient is in hospital (3). Other studies, outside the field of stroke, have suggested that patients with a poor understanding of their illness are less likely to express satisfaction with their health care (4) and dissatisfied patients are less likely to comply with medical advice, less likely to reattend the same service for further treatment and less likely to improve (4).

With the recent publication of The Health of the Nation (5), and the related guidelines for NHS managers (6), there has been more interest in stroke services. Those interested in planning such services need to know about the users' (patients' and carers') perceptions of their illness so that services can be tailored to their needs and wishes. A literature review revealed few previous studies in this area. We therefore set out to discover:

(a) What the perceptions and knowledge of stroke are among patients after an acute stroke and their carers.

(b) Is there a shortfall in provision of information to patients and their carers?

(c) How should stroke services develop to improve these aspects of patient care?

Patients and Methods

We prospectively identified 164 consecutive patients with acute stroke admitted to a Department of General Medicine over an 8-month period (October 1990 to May 1991). We defined stroke as rapidly developed clinical signs of focal or global disturbance of cerebral function lasting longer than 24 hours or leading to death with no apparent cause other than of vascular origin (7). A stroke physician (M.S.D.) assessed all patients, confirmed the diagnosis and entered them into the study. In addition, to ensure as complete case ascertainment as possible, we reviewed the discharge data on all admissions to the medical unit during the study period. We aimed to identify and examine all patients within 48 hours of admission. About 4 weeks after discharge from hospital we contacted surviving patients and identified a carer and arranged to interview both patient and carer at their home soon afterwards. Patients who remained in hospital for continuing care were not interviewed but their carers were contacted after the acute and rehabilitation phases of the patients' care were judged to have ended. We defined carers as next of kin, or the main care provider if this was different after discharge. We tried where possible to interview patients and carers separately.

We were unable to identify a standard method to study patients' perceptions of their illness that was relevant to stroke, so we developed our own semi-structured interview. Following recognized methods (8) we asked a mixture of open and closed questions. Patients were asked questions using adjectival scales (i.e. scales with adjectives describing discrete or continuous responses) to assess the amount of information and discussion that they would have liked about aspects of their illness and care. These scales provide more information and are more reliable than simple dichotomous judgements (9). With the subject's consent we recorded the interview on audio-tape. One interviewer (I.W.) carried out all the interviews. It was made clear to the subject that the interviewer was independent of the patients' previous and future health care management. The same interviewer coded the interviews either at the time of interview or, in some cases, after reviewing the recording of the interview. Data were stored on a micro-computer and analysed using the statistical package for the social sciences (SPSS) software (10).