Perceptions of stroke in the general public and patients with stroke: a qualitative study

Analysis

We developed higher codes from the data, including definition, risk factors, symptoms, treatment, reaction, differences, and information. We read and re-read the transcripts and notes and organised data into initial codes, then into higher codes that provided insight into identified themes. For example, one participant mentioned “It is very repeated and everything you pick up is telling you the same things” to one question in the discussion guide (“has anyone ever seen a pamphlet or poster or TV commercial on stroke? How did you feel about the information?”). This goes to initial code “presentprg”, which represented data for evaluation of present programmes then into higher codes on “information” which included initial codes of “presentprg” and “preferprg” (prefer programmes for stroke information).

We identified and discussed a hierarchical scheme of specific themes, issues, and problems that emerged from the data. We used the computer package Ethnograph 5.0 to analyse data more conveniently and effectively.22

Perceptions of stroke

Participants in both groups described stroke as a clot or a bleed. These participants believed that a blood clot went into the brain and blocked the blood circulation, which caused the affected part of the brain to become inactive. This resulted in the body being affected in one or more ways. Participants who had experienced a stroke were more likely to speak about stroke in their own idiom rather than using terminology from text books or available educational information—for example, “Headness, just headness—you know it was not headache at all—it's like something is going on in my brain—also dizziness.”

Participants were asked questions about the possibility of having a stroke. Most regarded the thought of any illness as an unnecessary additional worry. Indeed, they avoided thinking about any illness or other adverse events. There was a greater focus on the risk of heart attack or cancer than on the risk of having a stroke. Before they had a stroke most participants in the patient group had never thought about their lifetime chance of having a stroke and some knew nothing about stroke.

Risk factors and symptoms of stroke

All groups reported similar knowledge of risk factors for stroke. People generally mentioned stress, diet, high blood pressure, age, smoking, and genetics as causes of stroke. Few people believed that stroke can occur without any cause or without the presence of risk factors. Some people particularly emphasised stress and diet: “I always imagined that stress and frustration affected blood pressure, which sent it sky high, and then the blood pressure brought on the stroke”; “We are getting much fatter, because we're eating so much more. Because everywhere you go there is so much you can eat and it is so easy.” With regard to prevention, people pointed to community education, change of life style, and school or institution programmes. Descriptions of symptoms by people who had had a stroke (box 1) differed from descriptions by members of the general public group, which tended towards terminology found in textbooks or in National Stroke Association publications.23

Response to stroke symptoms

Box 2 shows how people in the general public group said they would respond to symptoms of stroke and how patients who had had a stroke did respond to their symptoms. Participants in the general public groups placed little importance on the symptoms. In reaction to the symptoms of numbness, tingling sensation, and weakness or paralysis of one side of the body some of them said they would lie down and take couple of paracetamol. But if they experienced difficulties in speaking (which they perceived as definitely abnormal), they would seek urgent medical attention.

Many in the stroke groups initially did not take their symptoms seriously and had waited for symptoms to abate. Most did not realise that the symptoms were related to stroke: “… not thinking it was a stroke, I had no idea,” “when I had the stroke, I didn't know what it was, I never had a clue,” “I didn't actually know what it was because I have never been sick.” Some did not identify their experience as stroke because the symptoms did not present as expected. Both groups thought that they would not receive any medical attention for minor symptoms such as headache and dizziness.

Treatment and expectation of treatment

Participants in both groups referred to rehabilitation as including physiotherapy, speech therapy, and occupational therapy. Some people described a drug for dissolving clots in the blood vessels and procedures for removing a clot from the artery, such as endarterectomy. Most of those who had had a stroke were aware of their own drug treatment and were concerned about the side effect of drugs. Box 3 shows their expectations of treatment after admission to hospital. A serious difficulty encountered during admission was that healthcare providers did not give satisfactory information about aspects of the treatment. There were mixed feelings about the extent of involvement in management decisions. Some felt sufficiently involved, some wanted to be more involved, and others felt incapable of being actively involved.

Differences between stroke and heart attack

There was some confusion in the groups between heart attack and stroke. Some participants in stroke groups identified “pain” in the chest as the distinguishing sign of heart attack. Other participants said that the only difference was whether the blood clot goes to the heart or to the brain. Some people in the general public group thought stroke was more serious than heart attack: “You'd much rather have a heart attack than a stroke because, a heart attack you get over it, and you get to do things right. A stroke needs such a long rehab and time,” “The stroke, there is more than that, the heart seems to—clear out the arteries, and will start to work again, because it's only affecting the circulation, but the brain—seems that doesn't come back.” Recognising symptoms of stroke in the community is seen as more difficult than recognising heart attack because stroke symptoms are much more heterogeneous. For example, “Your heart attack is sort of easier because of the chest pain, difficulty breathing, pain in your arm that sort of thing … Stroke, because it depends, what the function of that part of the brain is.”

Information resources

Participants in the general public groups knew little about stroke organisations or available educational materials such as pamphlets, booklets, and leaflets. Box 4 shows participants' preferences regarding educational programmes and their evaluation of current education programmes in the area. Most people expected to receive information from their general practitioner or from community education. They preferred simple and understandable messages rather than repetitive (confusing) messages.

Perception of stroke

Participants were disinclined to accept that they were ill or at risk of any kind of illness. They did not want to accept illness as part of their life. We have previously shown that people are more likely to say they have a low lifetime risk of stroke.7 These attitudes towards illness may counteract attempts to increase awareness of stroke in the community. Educational strategies may need to focus on the positive benefits of healthy lifestyles rather than on the negative results of risky lifestyles.

Most participants envisaged stroke as more serious than heart attack. However, because stroke symptoms present in various ways they are not easy to recognise. People who had had a stroke said that they had confused their symptoms with those of migraine, food poisoning, and Ménière's disease. This kind of confusion may be one cause for delay in presentation to hospital. Studies in people with myocardial infarction showed that presentation with atypical symptoms may be responsible for increased delays in many patients. 24 25 Dracup et al found that people who thought they only had heartburn or indigestion significantly delayed seeing a doctor.26

Response to symptoms

The lack of knowledge about stroke was one of the reasons for delay in early presentation at hospital. Previously our telephone survey revealed that most of the respondents (90%) would consider calling an ambulance or visiting a hospital casualty or emergency department if they thought that they were having a stroke. However, when asked how they would respond to particular symptoms, without reference to stroke, less than half and as few as 3% indicated that they would respond in this way.6 Other studies showed similar reasons for delay in hospital presentation. 8 27 Most patients in our study waited until the next morning or after the weekend because they believed that the symptoms would go away soon. To target populations at risk it is important to emphasise knowledge of symptoms and the appropriate response, but it is also to understand the role of defence and coping mechanisms.

Participants in both groups believed that they would not get any medical attention for symptoms that they thought were not typical or symptoms of minor stroke. Although the general public have enough knowledge to recognise symptoms of stroke, preoccupation about medical attention may contribute to delayed presentation. One prospective observational study showed that only a third of patients with myocardial infarction but without chest pain were correctly diagnosed and mortality in hospital was 23% compared with 9% among patients with chest pain. Patients without chest pain also presented later at hospital compared with those with chest pain.28 Change in the attitudes of healthcare providers may encourage people who are not sure about their symptoms to present earlier.

Information resources

Patients in our study reported that they had not received enough information from healthcare providers during their stay in hospital. An intensive educational programme in hospital may not be effective in the early stage of the relationship between patients, carers, and doctors because stroke, especially in the acute stage, excessively burdens people with other concerns (for example, losing a job and financial and other fears). Previous studies have shown that the quality of relationship between the doctor and patient influences the patient's satisfaction and compliance with treatment. 29 30 In the current study information about stroke from healthcare providers may not have been effectively transmitted to patients and carers or not retained. Discharge plans could incorporate provision of information about stroke prevention by a community stroke service.

Participants in our study recommended community education about recognising stroke and about appropriate responses by people who experience stroke. Some such educational programmes have been evaluated in other countries. 13 17 However, planners may need to evaluate the cost effectiveness of each educational project and consider its long term effects. As our participants emphasised, educational programmes (including printed information, visual and audio programmes, and community stroke service programmes) need to use simple and understandable information and focus on the population as a whole as well as on people at high risk.