Questions people ask about stroke HC Hanger and GP Mulley Stroke 1993, 24:536-538 Stroke is published by the American Heart Association. 7272 Greenville Avenue, Dallas, TX 72514 Copyright © 1993 American Heart Association. All rights reserved. Print ISSN: 0039-2499. Online ISSN: 1524-4628
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536
Questions People Ask About Stroke H.C. Hanger, FRACP, and G.P. Mulley, FRCP
Background and Purpose: We sought to identify the type and frequency of questions asked about stroke by patients, relatives, and caregivers. Methods: All stroke-related inquiries made to Stroke Association Advice Centers in the United Kingdom during a 4-month period were recorded. Results: During the study period, 1,397 people asked 1,908 questions. Nearly one quarter needed more information about the nature of stroke. The other most common inquiries concerned help at home (with many expressing concern about their current level of community support), requests for information about stroke clubs, speech difficulties, rehabilitation, personality changes, and depression. Conclusions: Knowledge of the questions asked should enable health professionals to provide better information to stroke victims and allow modification of stroke information pamphlets. (Stroke 1993;24:536-538) KEY WORDS • caregivers • rehabilitation • social support • stroke
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troke can be a devastating illness with far-reaching consequences for both patients and their families. 1 - 4 Despite this, many patients and their caregivers are poorly informed about the nature of the illness, recovery, and treatment. 5 - 8 Identifying the needs and concerns of these individuals is an important first step toward helping them. 7 The Stroke Association (formerly the Chest, Heart, and Stroke Association [CHSA]) operates a stroke advisory service in the United Kingdom. At the time of this study there were eight advisory centers (CHSA House London, Birmingham, Carlisle, Colwyn Bay, Glasgow, Knutsford, Leeds, and Newcastle-UponTyne), each staffed with trained advisors, who were aware of local services and support agencies. These advice centers are one vehicle by which the concerns and perceived needs of individuals affected by stroke can be accessed. We prospectively studied all individuals who contacted any of the advice centers with a stroke-related inquiry to ascertain the type and frequency of questions asked about stroke. Subjects and Methods During an 18-week period (May 1990-September 1990), each Stroke Association Advice Center kept a record of all inquiries made about stroke illness. The details recorded for each inquiry were kept as brief as possible (Figure 1), because the main emphasis was on the type of question(s) being asked. If the inquirer asked more than one question, these were recorded separately. No attempt was made to differentiate beFrom the Department of Medicine for the Elderly, St. James's University Trust Hospital, Leeds, England. Supported in part by the Chest, Heart, and Stroke Association (now Stroke Association). Address for correspondence: Professor G.P. Mulley, Department of Medicine for the Elderly, St. James's University Trust Hospital, Beckett Street, Leeds LS9 7TF, England. Received April 20, 1992; revision received January 20, 1993; revision accepted January 20, 1993.
tween personal, telephone, or written contacts. However, the majority of contacts to the centers were by telephone. The frequency of written requests approximates the number for whom no patient details are available (Table 1). The completed data sheets were sent to and examined by one of us. Results All eight stroke advice centers participated in the survey. Inquiries about stroke were made by 1,397 people during the study period. Each inquirer asked a mean of 1.4 questions (median, 1), giving a total of 1,908 questions. The age distribution of the stroke patients for whom the inquiry was made is shown in Table 1. Men slightly outnumbered women (608 men, 506 women). In 283 the sex of the patient was not specified. Table 2 outlines who made the inquiry. The types of questions asked and their frequency are shown in Table 3. When grouped by age of the stroke patient (aged 75 years), the questions asked were broadly similar in the three age bands. Stroke information, rehabilitation, speech difficulties, community support, and stroke clubs were among the six most common questions for each age bracket. However, older stroke patients (or their spouses) were less likely than their younger counterparts to make the inquiry themselves 0f 2 =26.75, /?75 years,18 yet this age group asked only 16.2% of the questions in this study. We need to be aware that this segment of the stroke community is not using the advice service as much as one might expect. Incontinence of urine and sexual difficulties are common after a stroke,1920 yet few inquirers asked about these subjects. This may reflect a reluctance to discuss personal and intimate details with a stranger over the telephone and is acknowledged as a source of potential bias. However, the large sample size may mitigate against some of the self-selection bias inherent in this type of survey. This study highlights some areas of concern for stroke patients that need to be anticipated and communicated by health professionals. In particular, more general information about stroke and the availability of community support needs to be given to stroke patients and their caregivers. Acknowledgments
180 (9.4) 47 (2.5) 5 (0.3) 96 (5.0)
37 15 9 8 7 6 14 61 (3.2) 13 (0.7) 26 (1.4) 175 (9.2) 64 (3.3) 40 (2.1) 13 (0.7) 52 48 48 13
(2.7) (2.5) (2.5) (0.7)
50 (2.6) ,908 (100.0)
CHSA, Chest, Heart, and Stroke Association.
home. This lack of anticipation by the hospital team causes much anxiety and adds a further unnecessary burden on the family.3 Nearly 10% of questions were about stroke clubs; most requested general information or details of the nearest club. These clubs have been set up to provide mutual support and social activities16 for members and to decrease the social isolation that is so common among stroke survivors.317
We wish to thank the staff of the CHSA Advice Centers for collecting the data for this study and for their enthusiasm in doing so. We also thank Mrs. E. Dougherty, Mrs. J. Huston, and Mrs. S. Garrett for preparation of the manuscript.
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