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
The online version of this article, along with updated information and services, is located on the World Wide Web at: http://stroke.ahajournals.org/content/24/4/536
Subscriptions: Information about subscribing to Stroke is online at http://stroke.ahajournals.org//subscriptions/ Permissions: Permissions & Rights Desk, Lippincott Williams & Wilkins, a division of Wolters Kluwer Health, 351 West Camden Street, Baltimore, MD 21202-2436. Phone: 410-528-4050. Fax: 410-528-8550. E-mail:
[email protected] Reprints: Information about reprints can be found online at http://www.lww.com/reprints
Downloaded from http://stroke.ahajournals.org/ by guest on July 15, 2011
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
S
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.
References 1. Holbrook M: Stroke: Social and emotional outcome. J R Coll Physicians Land 1982;16:100-104 2. Mulley GP: Practical Management of Stroke. London, Chapman and Hall Ltd, 1985 3. Isaacs B, Neville Y, Rushford I: The stricken: Social consequences of stroke. Age Ageing 1976;5:188-192 4. Brocklehurst JC, Morris P, Andrews K, Richards B, Laycock P: Social effects of stroke. Soc Sci Med 1981;15A:35-39 5. Anderson R: The contribution of informal care to the management of stroke. Int Disabil Studies 1988;10:107-112 6. Lomer M, McLennan DL: Informing hospital patients and their relatives about stroke. Clin Rehab 1987;1:33-37 7. Murray SK, Garraway WM, Akhtar AJ, Prescott RJ: Communication between home and hospital in the management of acute stroke: Results from a controlled trial. Health Bull (Edinb) 1982; 40:214-219 8. Anderson R: The unremitting burden on carers. Br Med J 1987; 294:73-74 9. Reynolds M: No news is bad news: Patients' views about communication in hospital. Br Med J 1978;1:1673-1676 10. Dunkelman H: Patients' knowledge of their condition and treatment: How it might be improved. Br Med J 1979;2:311-314 11. House A: Depression after stroke. Br Med J 1987;294:76-78 12. Kinsella GJ, Duffy FD: Psychosocial readjustment in the spouses of aphasic patients. Scand J Rehabil Med 1979;11:129-132 13. Griffiths VE, Miller CL: Volunteer Stroke Scheme for dysphasic patients with stroke. Br Med J 1980;281:1605-1607 14. Ebrahim S, Barer D, Nouri F: An audit of followup services for stroke patients after discharge from hospital. Int Disabil Studies 1987;9:103-105 15. Jones EW, Densen PM, Brown SD: Post hospital needs of elderly people at home: Findings from an eight month followup study. Health Serv Res 1989;24:643-664 16. Starting a Stroke Club/Stroke Support Group. Leaflet S4. London, Chest, Heart, and Stroke Association, 1989 17. Greveson GG, Gray CS, French JM, James OFW: Long term outcome for patients and carers following hospital admission for stroke. Age Ageing 1991;20:337-344 18. Bamford J, Sandercock P, Dennis M, Burn J, Warlow C: A prospective study of acute cerebrovascular disease in the community: The Oxfordshire Community Stroke Project 1981-1986. J Neurol Neurosurg Psychiatry 1990;53:16-22 19. Sjogren K: Sexuality after stroke with hemiplegia. Scand J Rehabil Med 1983;15:63-69 20. Borrie MJ, Campbell AJ, Caradoc-Davies TH, Spears GFS: Urinary incontinence after a stroke: A prospective study. Age Ageing 1986;15:177-181
Downloaded from http://stroke.ahajournals.org/ by guest on July 15, 2011
