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Contributors: AR initiated the research, discussed core ideas, participated in the protocol design, in analysing and interpreting data, and in writing the paper. JC participated in the data collection and in analysing and interpreting data and contributed to the paper. MC participated in the protocol design, discussed core ideas, and contributed to the paper. AR and MC are guarantors for the study.
Objectives: To explore the circumstances and factors that explain variations in response to a cardiac event and to identify potentially modifiable factors.
Design: Qualitative analysis of semistructured, face to face interviews with patients admitted to two district hospitals for a cardiac event and with other people present at the time of the event. Patients were divided into three groups according to the length of delay between onset of symptoms and calling for medical help.
Subjects: 43 patients and 21 other people present at the time of the cardiac event. Patients were divided into three groups according to the length of time between onset of symptoms and seeking medical help: non-delayers (<4h; n=21), delayers (4-12 h; n=12), and extended delayers (>12h; n=10).
Main outcome measures: Decision making process, strategies for dealing with symptoms, and perception of risk and of heart attacks before the event according to delay in seeking help.
Results: The illness and help seeking behaviour of informants had several components, including warning, interpretation, preliminary action, re-evaluation, and final action stages. The length of each stage was variable and depended on the extent to which informants mobilised and integrated resources into a strategy to bring their symptoms under control. There were obvious differences in informants’ knowledge of the symptoms that they associated with a heart attack before the event. Non-delayers described a wider range of symptoms before their heart attack and twice as many (13) considered themselves to be potentially at risk of a heart attack compared with the other two groups. For most informants the heart attack differed considerably from their concept of a heart attack.
Conclusion: The most critical factor influencing the time between onset of symptoms and calling for professional medical help is that patients and others recognise their symptoms as cardiac in origin. This study suggests that various points of intervention in the decision making process could assist symptom recognition and therefore faster access to effective treatment.
A critical factor in preventing premature death or disability from a heart attack is ensuring that patients receive effective treatment to reduce damage to the heart muscle. Thrombolysis can reduce the size of the clot and hence the amount of muscle damage, but it must be given early for maximal benefit.1,2 Thus patients or their associates need to recognise the symptoms and call for appropriate help immediately. We sought to explain variation in response to a cardiac event and to identify modifiable factors.
The study was conducted in two district general hospitals with coronary care units in one health authority. The subjects of the study were all admitted patients who had survived a cardiac event, which for this study was defined as a suspected or confirmed acute myocardial infarction. One patient who was too ill to be interviewed on the fifth day after the event was excluded. An integral part of the research design was interviewing, whenever possible, anyone else present at the time of the cardiac event. Subjects were recruited over five separate weeks in summer and winter months to ensure the required diversity of experience of a cardiac event and access to medical services. The original study design was intended to include associates of patients who died before arrival at hospital, but we could not obtain full ethical clearance for this.
Before the main study a pilot study was undertaken in one of the hospitals. During one week eight patients surviving a cardiac event and their associates (four relatives) were interviewed. They were not included in the main study.
Forty three patients were identified from coronary care units, accident and emergency departments, and medical and surgical wards, to ensure total coverage. Twenty one relatives and bystanders were also recruited.
Patients were approached three to four days after admission to hospital and interviewed on the fifth day. The interviews lasted between 45 and 60 minutes. Patients were interviewed alone in the morning, and the other people were interviewed in the afternoon of the same day before they visited the patient. The emphasis in the interviews was on enabling the informants to give spontaneous accounts of their decision making at the time of the cardiac event. However, after thorough piloting we decided to add some direct questions about informants’ beliefs and knowledge of cardiac events. The themes explored in the interviews covered what experiences and actions led up to the cardiac event; when informants thought that the cardiac event had begun, what they thought the problem was and why it had occurred; whom they talked to and the effect of this interaction; when the decision to call for medical help was made and by whom; and who was called. The more direct areas of questioning were informants’ conception of risk factors; which groups of people they associated with heart attacks; their knowledge of symptoms before the event; their concept of a heart attack; their knowledge of thrombolytic treatment; their family history; and personal details, including risk factors.
The interviews were tape recorded and transcribed verbatim. Before analysis informants were divided into three groups according to the length of time between the onset of symptoms and seeking medical help. The delays were less than 4 hours (non-delayers), between 4 and 12 hours (delayers), and more than 12 hours (extended delayers). The division was prompted by current evidence, which suggests that the earlier thrombolytic treatment is given the greater the reduction in deaths1 and that for patients presenting after 12 hours benefit is limited.2 Of the patients interviewed, 21 were non-delayers, 12 delayers, and 10 extended delayers. The division of informants into these groups provided a basis for illustrating the differences between those who seek help quickly and those who do not.
The data were analysed using the constant comparative method to cover identified and emerging themes.3 A further analysis was undertaken by a second researcher AR, who listened to the tape recordings and examined the data to ensure that concepts, relations between variables, differences between groups, and the division of informants into the groups were confirmed or modified if necessary. There was agreement over which groups patients belonged to in all but three cases.
Forty patients were diagnosed as having a confirmed acute myocardial infarction, and 9 of them had had a previous infarction (5 were non-delayers (24%), 2 delayers (17%), and 2 extended delayers (20%)) (table (table1).1). Three quarters of the non-delayers were men (16/21) compared with 58% (7/12) of the delayers and 50% (5/10) of the extended delayers. A greater proportion of non-delayers were under 65 years of age compared with the other two groups (67% (14/21) v 58% (7/12) and 40% (4/10) respectively). A greater proportion of non-delayers also had manual occupations (62% (13/21) v 58% (7/12) and 50% (5/10) respectively).
The illness and help seeking behaviour of informants had several stages, including warning, interpretation, preliminary action, re-evaluation, and final action. The length of each stage was variable and depended on the extent to which informants mobilised and integrated resources into a strategy to bring their symptoms under control. The time between onset of symptoms and calling for medical help was directly affected by the number and quality of the resources used in the individual strategy.
Five patients’ symptoms were classically severe and unexpected and led them to respond quickly and call for medical help (cases 3, 4, 6, 20, and 21). The remaining patients experienced a warning stage in which symptoms were often intermittent and variable. The symptoms in many cases made the informants realise that they were not experiencing an episode from an acute illness but an evolving and cumulative event. During this stage patients treated themselves, referred to others, and in some cases sought medical help. For most patients, experience of symptoms before the acute phase had two effects: to increase tolerance of symptoms and to ensure that treatments were available to relieve symptoms during the acute event.
Table Table22 shows the range of symptoms reported by informants. The range and severity of symptoms were similar in the three groups, symptoms initially being interpreted as common non-threatening problems by most informants. However, previous knowledge of the symptoms associated with a heart attack was noticeably different in the three groups. Non-delayers knew about a wide range of symptoms, including sweating, nausea, pains in the arms and neck, and breathing problems. Delayers generally knew only about chest and arm pain, while most extended delayers were unsure about symptoms.
Although most informants assigned an inappropriate diagnostic label to their symptoms at this stage, the strategy adopted for dealing with the symptoms delineated the three groups.
The non-delayers generally entered a period of isolation and self evaluation, they did not consult with others, and only a few took any form of drug treatment. Most engaged in some form of diversion—for example, drinking cups of tea or moving about—while they evaluated the situation (box). In doing this, their symptoms were not masked and therefore escalated to a point where re-evaluation revealed the serious nature of the event. Non-delayers used their experience, medical knowledge, and intuition to reinterpret their symptoms (box).
“I can’t really explain how I felt, but I didn’t feel well and I thought it was time to sit down and think about things. So, I just sat down and had a drink of water and then thought that I would sit more comfortably.”
“I got my dressing gown on, went downstairs, had a drink of water, went out into the conservatory, went out into the garden. Had a little walk around the garden and I thought: ‘Oh, this will ease off.’”
“I knew it was a heart attack because I knew that once you get the pains in the chest and pain in the arm, I knew that it was a heart attack...only because of experience though, you know.”
Lay medical knowledge
“Well I’m not an expert, I just have what I have read in the newspapers, but I asked my husband if it could be a heart attack because he had a feeling like ... a belt around [his] chest and down the left arm.”—Wife of non-delayer
“I knew it was the heart ... does that sound conceited? But you know your own body and I was pretty sure that that was what it was.”
All of the patients in this group reached a point where they thought they were experiencing either a heart attack or something associated with the heart.
The delayers used various medical and non-medical resources to try to bring their symptoms under control. They also consulted lay people and used the information in various ways to try to rationalise the experience of illness. This often resulted in delay as the experience of others had to be compared and discounted. Contextual and personal information was used to reinterpret the situation (box, above).
Attempts to treat
“Yes I said: ‘Oh, you know, I’ve got this indigestion’ and of course my missus says: ‘Well take some of your Zantac.’ So I did like, you know, but it made no difference and they [mother in law and wife] said: ‘Try some lemonade.’ Then her mum gave me some mints. I tried everything.”
“He said he thought it could be thyroid but I mean he isn’t a doctor ... he said that it could even be a hiatus hernia, because he’s got a hiatus hernia and he gets a burning feeling sometimes there.”
Use of personal and contextual information
“I had been doing a lot of these fruit inspections so I’d honestly thought it was just working ... but on Friday I’d got home earlier and so I said: ‘Ah, I’ll do the tea, I’ll make something ....’ The only thing I can really do is a fry up stuff and that’s what I did. I fried up sausages and got some eggs and got some chips in the oven and we had a fry up .... So then I just thought: ‘Well I’ve been out drinking, had this fry up and I’ve got real indigestion.’ That’s what I thought it was when I went home.”
This process of treatment and continual reassurance and readjustment to the symptoms delayed the realisation that the symptoms were serious enough to require urgent medical intervention. None of the patients in this group considered that they were having a heart attack but eventually came to realise that they were experiencing something serious.
The extended delayers tried treatments and movement as well as seeking both lay and medical consultation in their attempts to deal with their experience. The greater the number of interventions used, whether in the form of drugs or consultation, the greater the delay. Notable in this group was the influence of contact with the medical profession. Elements of diagnosis by health professionals that discounted patients’ risk of having a heart attack and attributed symptoms to other causes both before and during the cardiac event considerably influenced decision making and added to the delay (box, next page).
A patient initially thought that her symptoms were caused by a viral infection:
“I thought it’s not angina because it’s both arms. I mean you think, you tend to kid yourself about these things, and I thought: ‘Well my heart doesn’t feel as if its palpitating, doing this’ [hand gestures]. And you think these things, and I thought well, I thought it could be a viral infection because of these glands coming up. And sweating like a pig as well.”
She subsequently contacted her general practitioner’s out of hours service and the doctor assured her over the telephone that the symptoms were viral: “‘Oh there’s a lot of that going around, it’s a viral infection, just take some aspirin and if you’re not better after 48 hours ring us up again.’” She therefore believed that her problem was viral and treated it accordingly for nearly 24 hours in spite of worsening symptoms.
A patient became progressively short of breath and developed a “severe” indigestion-type pain. He visited his doctor, who diagnosed hiatus hernia and prescribed drug treatment. He did not gain relief from his symptoms and began to experience other symptoms. Having read the information sheet accompanying the drug to treat hiatus hernia, however, he attributed his additional symptoms to side effects from the drug.
“Friday morning [I] was out doing some jobs on the tractor because it was wet, and I went to move and it felt as if I had got grease on the bottom of my shoe. It didn’t want to go where I wanted it to. So I went indoors and that and sat down for a little while, looked on the tablet packet and it said there are side effects, that it affects your muscles. So, OK, I wasn’t worried—carried on working.”
Patients in this group failed to obtain effective help in managing their symptoms and were eventually admitted to hospital because they could no longer cope.
Patients’ previous perceptions of their own risk varied among the three groups, with more than twice as many of the non-delayers considering themselves to be potentially at risk of a cardiac event compared with the other two groups. In describing a typical potential victim of a heart attack, informants described a stereotype unlike themselves (box, above right).
Typical heart attack
Portrayal in media
For most informants their experience of a heart attack differed considerably from their concept of what a heart attack would be like. Heart attacks were thought to be dramatic, sudden events, as often portrayed on television. Informants associated heart attacks with collapse and death, whereas they were, in many cases, still able to function to some degree (box, below right).
Studies of patient behaviour and decision making at the time of a heart attack have identified socioeconomic class, education, age, sex, marital status, and race as factors implicated in delay.4,5 Other variables identified include clinical factors such as having had a heart attack before and the intensity of symptoms.6,7 Our study used a qualitative approach to explain delay rather than produce statistically representative factors associated with delay. Socioeconomic group and previous occurrence of a heart attack were similar in the three groups, but the age and sex distributions varied, with a greater proportion of men under 65 being non-delayers.
The most critical factor influencing the time taken between onset of symptoms and seeking medical help is that patients and others recognise the symptoms as cardiac in origin. Our results show that intervention could take place at various points in the process to help symptom recognition and speed access to effective treatment. Non-delayers were more likely to see themselves as potentially at risk, were able to describe a wider range of symptoms of a heart attack, and were much less likely to treat their symptoms.
The main focus of information campaigns to date has been to recommend that people experiencing central chest pain (some list additional symptoms) for more than 15 minutes should call an ambulance.8–10 We found, however, that for most people a heart attack evolved, they experienced the symptoms for much longer than 15 minutes before seeking help, and many were able to contain or relieve their symptoms to some extent. Thus, in most cases, the 15 minute rule may be too simplistic to be effective. Linked with this is the stereotypical heart attack victim and the perception of a heart attack as a dramatic event in which people collapse with crushing chest pains and probably die. Clearly, the myth that a heart attack is a dramatic event needs to be dispelled and public perceptions of a heart attack and its associated symptoms need to be changed.
Editorial by Evans
Funding: This study was funded by the British Heart Foundation.
Conflict of interest: None.
The potential for qualitative research to sensitise policymakers and practitioners to the perceptions of health service users and professionals1-1 and to strengthen aetiological and health services research1-2 is now well recognised, but the reporting of qualitative data continues to generate dissatisfaction for both researchers and readers. For qualitative researchers used to the more discursive formats of social science journals, the need to present succinctly with clear implications for policy or practice can constrain reports of the theoretical richness, complexity, and ambiguity of their research findings. For readers, small sample sizes and illustrative quotes imply impressionistic accounts of doubtful validity and generalisability. The development of guidelines for producing1-3,1-4 and judging qualitative research1-5–1-7 has been helpful for researchers and editors, but a problem remains for many readers about the credibility of published qualitative research in medical journals. Few authors report how validity and reliability were maximised,1-8 and, indeed, such criteria may be inappropriate in theoretical rather than empirical studies, which have traditionally been the most influential in health.1-9
One strategy used by some researchers to improve the credibility of published papers has been to include routinely the line: “the data were analysed using grounded theory,” which suggests an esoteric technique guaranteeing rigour. Unfortunately, what follows may be merely an account of some key themes in the data, with brief textual quotes in illustration, and sceptical readers remain unconvinced that qualitative analysis is anything other than journalistic reportage. Ruston et al have used the constant comparative method in a more analytical way to generate data which contribute to understanding what stops people seeking help quickly after a heart attack and also explore patients’ perceptions of what a normal heart attack looks like. These findings are most useful to practitioners and health promoters, and the authors have provided information on how they improved reliability. However, the constant comparative method, which is derived from grounded theory, can offer more than this when it is applied and reported well.
Grounded theory was developed by the sociologists Anselm Strauss and Barney Glaser as a way of formalising the operations needed to develop theory from empirical data.1-10–1-12 It is a methodological approach (entailing a cyclical process of induction, deduction, and verification) and a set of strategies of data analysis to improve the reliability and theoretical depth of analysis. Particular attention is paid to the processes entailed in coding data. Too often in published health research coding has meant simply labelling data extracts as examples of themes the researcher was interested in. Coding should entail comparing indicators (such as actions or fragments of text or talk) to refine their fit to underlying concepts. Initial coding can be based on what Glaser and Strauss call in vivo codes as well as on conceptually derived codes. In vivo codes are the categories used by respondents themselves to organise their world—for example, the description of some patients as “normal rubbish” noted by Jeffrey in his work on staff in accident and emergency departments. These were patients attending with minor or self inflicted injuries or those who had social rather than medical problems.1-13 However, such codes are provisional and are essentially descriptive summaries of respondents’ own accounts. Analytical coding requires also questioning and comparison. Indicators are coded according to a coding paradigm, which the researcher uses to ask a battery of questions of each indicator to establish its properties, its dimensions, and its relation to other codes. Constant comparison of indicators with each other refines their fit to the emerging conceptual categories. In the example of Jeffrey’s study of staff in accident and emergency departments,1-13 the properties of patients termed normal rubbish were inductively generated through analysing accounts of why staff did not like dealing with certain patients. Coding also has to be theoretically informed: Jeffrey used sociological theory about the sick role to analyse the properties both of patients termed normal rubbish and of “good patients.”1-13 Normal rubbish were patients whose behaviour did not conform to social norms of the sick role, whereas good patients enabled staff to practise clinical and technical skills.
The key to developing rigorous and valid theory using the constant comparative method is the search for deviant cases. These can be within the researcher’s data, which are searched for exceptions to the emerging relations between codes. Grounded theory also advocates theoretical sampling, in which potentially deviant cases can be purposively sampled as the study progresses. A full report of qualitative analysis should account for deviant cases and how they have contributed to refining theory. Constant comparison does not stop within the researcher’s own data set. Theoretical insight and comparative material comes from other research, perhaps outside the substantive field of interest.
For Glaser and Strauss social phenomena are always complex and require sensitive and dense theory to account for as much variation in the data as possible. The challenge for qualitative researchers is to find ways of reflecting this complexity. To do this they need adequate methods of analysis to offer complex theoretical insights within the constraints of biomedical and health services journals. Without such endeavour, qualitative research will remain descriptive anecdote.