The Illness Perceptions of Women Following Symptoms of Acute Myocardial Infarction: A Self-Regulatory Approach

Abstract

1. Introduction

CHD is the leading cause of mortality in both men and women in the United Kingdom (UK) and in the western world [1]. Since 2000, the Department of Health has implemented National Service Frameworks (NSF) across England. These are long-term strategies for improving specific areas of care. They set standards and identify key interventions for defined care groups and services, such as Diabetes and Mental Health as well as CHD. The NSF for CHD [2] sets out standards and levels of service for the prevention, diagnosis and management of CHD. In addition the Department of Health white paper, Saving Lives: Our Healthier Nation [3] sets a target of reducing premature death rates from cardiovascular disease in England by two-fifths by 2010.

The early administration of thrombolytic drugs is significantly related to survival in an acute MI with clinical trials conclusively demonstrating that mortality is reduced if thrombolytic drugs are administered early [4,5]. The NSF has set targets for ‘door-to-needle’ times for thrombolysis in acute MI of 20 min [2]. If thrombolysis can be achieved within a ‘golden hour’, from when the patient first experiences symptoms to the administration of the thrombolytic drug, mortality can be reduced by 46% [6]. This means that it can be crucial to their survival that patients recognise the seriousness of their symptoms and seek immediate help. Understanding the cognitive processes that influence the development of a serious model of the illness may lead to better understanding of treatment-seeking behaviour.

CHD has been socially constructed as a gender-specific disease, the effect of which has been to alter the perception of risk amongst health professionals and women themselves [7–12]. That women do not see themselves as at risk has been linked to delays in seeking treatment following the onset of symptoms of acute MI [13]. The aim of this study was to explore the illness perceptions of a sample of women following acute myocardial infarction using the self-regulatory model of illness behaviour as the theoretical framework.

1.1. A self-regulatory approach to illness perception

An illness perceptions approach using Leventhal and Nerenz' Self-Regulatory Model of Illness Behaviour [14] has been used to explain and predict health promoting behaviour in patients with a variety of illnesses such as cancer and chronic fatigue syndrome as well as following myocardial infarction [15]. The central view of the model is that individuals construct internal representations, which reflect their understanding of previous experience and are used for interpreting new experiences and planning behaviour. The model assumes that once a health threat is recognised an individual is motivated to return to a state of health, hence, self-regulatory. The first stage is interpretation. Within this the health threat is assessed through the perception of symptoms and social messages. These contribute to the development of illness cognitions or representations that include identity of the illness, the cause(s), consequences, time-line or how long the illness will last, and the degree to which the illness can be cured or controlled. The identification of the problem also results in changes to the emotional state of the individual. In turn, the emotional state contributes to the development of the illness representations. The second stage of the model is the development of coping strategies to deal with the health threat. This includes avoidance coping such as denial, and approach coping such as taking medication. The final stage is appraisal or re-appraisal, where the individual evaluates the effectiveness of the coping strategy adopted and decides whether to continue with this strategy or adopt an alternative. The model is cyclical in nature so that the individual is constantly reassessing and evaluating the health threat (Fig. 1) [16].

Fig. 1.

The self-regulatory model of illness behaviour. Leventhal and Nerenz [14], from Ogden (1996), p. 41 [16].

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1.2. Interpretation of symptoms

Chest pain is the most common symptom of acute myocardial infarction in both men and women. The classical type of pain is crushing central chest pain radiating down the left arm [17]. Other associated symptoms include shortness of breath and nausea and vomiting. However, gender differences exist in the presentation and perception of symptoms of acute MI [18,19]. Back pain has been found to be twice as common in women as men and women are more likely to report arm or shoulder pain, jaw, neck and throat pain, toothache, pain in the pit of their stomach or retrosternally [20]. Women also tend to report unusual fatigue and weakness in their arms and shoulders. Women are more likely than men to experience nausea and vomiting and are more likely to experience symptoms when under mental stress or at rest rather than on physical exertion [18]. Signs of cardiac failure such as breathlessness are more strongly correlated with acute MI in women than in men [21].

However, it is not just the symptoms themselves that are of importance but also the meaning given to them by the individuals themselves. Women with CHD have been found to have low levels of somatic awareness and generally attributed symptoms of CHD as being benign [22]. One further difficulty is that for some women the onset of symptoms is slow and may subside and recur which makes identification difficult [17,23]. It seems that women may recognise their symptoms as being abnormal but do not acknowledge their serious nature [12,13,22,23].

A self-regulatory model of illness has been used to explain patients' decisions to seek professional help following symptoms of acute MI [12,13,15,24]. The identity component of the illness representation has been correlated with treatment delays. Those with a high proportion of symptoms not usually associated with heart disease, such as dizziness or sore eyes, had longer delays. Those who identified breathlessness as being related to their condition were more likely to seek help early [15]. Given that women may have atypical symptoms, this may partly explain why they also tend to delay seeking help longer than men [13]. Furthermore, an awareness of symptoms, perceived insignificance of symptoms, self-treatment, perceived threat and lay consultation have been considered to be influencing factors in the decision to seek help [15].

Interpretation of symptoms against a background of co-morbidities has been found to make interpretation of symptoms more difficult [25]. The presence of co-morbidities are more common in older women, hence, age may be an influencing factor in the interpretation of symptoms.

1.3. Coping responses

In response to symptoms, it has been found that most women initially engage in coping strategies such as ignoring symptoms (avoidance coping), resting, taking medication, changing position, sleeping or having a drink (approach coping). Evaluation of these strategies led them to consider their symptoms as being of possible cardiac origin. Only when symptoms were considered to be a health threat was emergency help sought [13,15,23–25]. This analysis is consistent with the self-regulatory approach to understanding illness behaviour in that the health threat is constantly being appraised and evaluated which results in the adoption of alternative behaviours.

1.4. The influence of lay persons

The influence of family members and others has been shown to affect the patient's decision to seek help. A study by Alonzo [26] found that in over 1000 patients with acute MI, over 93% sought the advice of family members or friends before seeking professional help. The influence of family and lay persons on care seeking, in this study was shown to be both positive and negative in terms of the effect on seeking professional help. However, most studies have shown that seeking advice from family and friends had a positive effect in seeking professional help [24,25,27–29].

2. Methods

2.1. Sample

The participants in this study were 10 women who had been admitted to one of three district general hospitals in the South East of England with a diagnosis of acute MI. The sample was purposeful in that women were selected from a range of age groups—30–59, 60–79, and 80 years and over. The mean age was 72 years. This was below the average age for women with an MI in this locality, which was 74 years and 6 months [30]. Nationally the average age for an MI in women is 76 years [1]. As a result this sample cannot be considered representative of the population of women with MI.

The study conformed to the principles outlined in the Declaration of Helsinki [31]. Informed consent was obtained and ethical approval was given by the NHS Trust Research Ethics Committee and the Local Research Ethics Committee (LREC). Pseudonyms have been used throughout this study.

2.2. Data collection

Data were collected retrospectively by a semi-structured interview 3 months following the acute MI. The Self-Regulatory Model of Illness Behaviour according to Leventhal and Nerenz [14] was used as the theoretical framework for the development of the interview schedule and data analysis. The interview schedule included demographic details including social networks, illness representations, and coping strategies. Interviews lasted approximately 1 h (mean time 69 min, range 47–89 min). Interviews were conducted in 9 out of 10 cases in the participants home. One interview was conducted in the researchers place of work as requested by the participant. Field notes were written following each interview.

2.3. Procedure

Participants were initially contacted in writing by the cardiac rehabilitation team. Sixteen women were contacted of whom 10 agreed to participate. All women were then contacted by telephone by the researcher to arrange the interview. Consent forms and information sheets detailing the purpose and procedure of the study were sent to the participants prior to the interview. Following the interview, participants were given the contact details of the cardiac rehabilitation team counsellor should they wish to discuss any concerns arising from the interview.

2.4. Data analysis

Tapes were transcribed and the transcript returned to the participant for checking. One participant requested not to receive the transcript due to fears of confidentiality within the family. Data were analysed according to the framework method as described by Ritchie and Spencer [31]. This consisted of five stages: familiarization, identification of a thematic framework, indexing, charting, and mapping and interpretation. During the familiarization stage, the tapes were listened to and the transcriptions read. Key ideas and recurrent themes were noted. In identifying a thematic framework, key issues, concepts and themes were identified. These issues were determined a priori according to the research aims and the theoretical framework but also inductively based on emerging themes. For indexing, data were revisited, applying the thematic framework. Descriptive labels based upon the themes indexed text were applied. During the charting stage, data were ‘lifted’ out of context and re-arranged according to themes, maintaining a reference to its original source. During the final stage of mapping and interpretation, charts were reviewed and patterns, associations and explanations were sought and identified. This again, was based upon the research questions and literature review and included reading the transcripts and listening to the tapes, identifying possible themes, indexing, charting and mapping themes and interpretation.

3. Results

Of the 10 women interviewed, three were married and living with their husbands, one was single and six were widowed. One woman was in paid full-time employment. The average time before professional help was sought was approximately 80 min. The range was less than 5 min to 6 h.

3.1. Interpretation of symptoms and illness representations

From the data, a number of themes emerged in relation to determining the seriousness of the symptoms and influencing the decision to seek help (Table 1).

Table 1Interpretation of symptoms and illness representations(1) Symptom experience and severity(2) Lack of perceived susceptibility(3) Past experience of illness(4) Comparison with the experience of others(5) Perceived cause

3.1.1. Symptom experience and severity

Chest pain was the most common symptom experienced. Seven women identified chest pain as a symptom, although only two described it as severe and the main symptom.

Helen (48 years old, married, sought help after 30–60 min): this was such a mega pain. I don't think you could have anything like it in your life. It felt like a truck being driven over my chest.

Three women experienced no chest pain at all or ‘silent MIs’ [17]. Of these, two respondents had diabetes mellitus.

Nell (76 years old, widowed, sought help after 1.5–2 h): I didn't have any pains. I just felt very, very restless. I was all fidgety and that was unlike me.

Other symptoms experienced included sweating (3 women), collapse (2), fatigue (2), nausea and vomiting, (2) palpitations (1), arm ache or deadness in the arms (2), restlessness and agitation (2), back pain (1), and shortness of breath (1). Most women experienced multiple symptoms ranging from one who experienced five symptoms to one who described one symptom. Most women (6) experienced two or three symptoms.

From these data, severity of symptoms was an influencing factor in determining the serious nature of the illness and the decision to seek help. Those who described severe, unusual symptoms, especially if they were of sudden onset sought help early. These individuals also tended to experience a number of symptoms of which sweating seemed to be significant.

Cath sought immediate help, less than 5 min and described the most (5) symptoms.

Cath (67 years old, married): Then it started, the sweating. Oh, you'd thought I'd just come out of a shower. I was saturated. My hair was soaking wet.

Pauline called for help 15–30 min following the onset of chest pain and sweating.

Pauline (73 years old, widowed): It was just as though someone had punched me in the chest. I knew it was serious; it wasn't a bit like indigestion or anything. It was almost as though somebody had just hit me it was so sudden. Then after about 10 minutes I came out in cold sweat and my hair was just soaking, as though I'd been in a shower. So I knew something was wrong so I dialled 999.

Pam sought help after 15–30 min of chest pain, sweating and nausea.

Pam (80 years old, widowed): I woke up and I just thought to myself I don't feel right and then I started sweating and then I got this pain and I thought to myself, I am going to die. I really thought I was going to die. I felt sick. I phoned my daughter and said ‘could you come’ I said ‘I'm going to die and I don't want to die on my own.

It may be significant that in this sample, three women described sweating as a symptom. It is these women who had the shortest delays. It may be that profuse sweating may be perceived as unusual and serious.

3.1.2. Lack of perceived susceptibility to MI

Without exception, the women in this study did not perceive themselves to be at risk of an MI, despite having a number of well-recognised risk factors in many cases.

Joyce (73 years old, widowed): I've lost a stone in weight, I go to keep-fit. I don't smoke. I don't drink. I might have the occasional glass of wine, but I go for weeks without it. So you know, I didn't think I was in line for anything like that.

Helen (48 years old, married): I would never have said I was at risk.

Nell, despite having angina says:

Nell (76 years old, widowed): I did not think I was the type of person to have a heart attack or anything like that.

It is hypothesised, from the data, that this lack of perceived susceptibility to MI may mean that individuals were more likely to attribute their symptoms as being benign rather than serious and did not readily identify an MI as a potential cause.

3.1.3. Past experience of illness

From these data, past experience of illness and coexisting morbidity seemed to be significant in determining the seriousness of symptoms and influencing the decision to seek help. Those with experience of long-standing, chronic illness seemed less likely to attribute their symptoms to a serious illness and an acute event. For example, Nell suffered from diabetes and venous leg ulcers whilst Delia suffered from diabetes, ulcerative colitis and asthma.

Nell (76 years old, widowed, sought help after 1.5–2 h): I didn't have any pains. I just felt very, very restless. I was all fidgety and that was unlike me.

Delia (82 years old, widowed, sought help after 5–6 h): I had a cough and I thought to myself, my chest is hurting because I've been coughing a lot and what with my tummy trouble.

Although Nell and Delia were amongst the oldest women, it seems that it may not be age per se but the presence of co-existing morbidities that makes interpretation of symptoms more difficult although the presence of other illnesses increases with age. This is supported by Pam, one of the oldest women at 80 years old who described herself as previously well and who immediately recognised her symptoms as an MI and sought help early, after 15–30 min.

Previous experience of MI also seems to be significant in determining the seriousness of the event. For example, Cath who had had previous MIs experienced the same sudden onset of symptoms and sought immediate help.

Cath (67 years old, married, sought help after less than 5 min): I knew it was another one (MI) so I shouted to my husband straight away.

In conclusion, those with experience of chronic illness and co-existing morbidity seemed least able to recognise the seriousness of their symptoms or attribute them to an MI and were delayed significantly before seeking help. This may be independent of chronological age. Previous experience of MI seemed to prompt seeking treatment.

3.1.4. Comparison with the experience of others

From these data, the experiences of others such as family members and friends seemed to influence whether the symptoms were recognised as a heart attack or perceived as serious. If the symptoms were different from the known experience of others, the women in this sample seemed less likely to attribute their symptoms to an MI.

For example, Helen who sought help after 30–60 min,

Helen (48 years old, married): Because both my parents had pains in their arms, I associated heart attacks with pains in the arms. Because I didn't have pain in my arms, I didn't think at any one time that I was having a heart attack.

Katy sought help after 60–90 min and compares her own experience with that of her sister,

Katy (80 years old, widowed): The only symptom I had was that I felt as if my heart was thumping out of my chest and I couldn't breathe. I didn't realise then that it was a heart attack. I thought that with a heart attack you would have severe chest pains like my sister did, but evidently it doesn't take everybody in the same way.

However, if the experience was similar to their own, these women seemed to draw comparisons between the experience of others and their own. Pauline sought help after 15–20 min and says,

Pauline (73 years old, widowed): A friend of mine had had a heart attack about four years before and she mentioned the very cold sweats so it was when I had them that I realised that was what it was.

3.1.5. Perceived cause

Only two women in this sample recognised the cause of their symptoms as an MI immediately: Cath, who had previous experience of MI and Pauline who identified her symptoms as being similar to her friend's. The others initially attributed the cause to something less serious, Helen initially believed her chest pain might be due to indigestion.

Helen (48 years old, married): I'd woken up with these pains and they were bad enough to wake me up, but I didn't know whether I'd got indigestion.

Those who immediately recognised the cause of their symptoms as an MI sought help early whilst those who initially believed their symptoms to be less serious such as indigestion, delayed.

3.2. Coping responses

In this study, where a cause could be identified, whether benign or serious, initial coping responses were aimed at relieving symptoms related to that cause. This is defined as approach coping as defined by Leventhal and Nerenz [14]. Where the cause of symptoms was attributed to a benign cause such as indigestion, coping responses where aimed at relieving symptoms such as taking medication.

Helen (48 years old, married, sought help after 30–60 min): I didn't know whether I'd got indigestion, so I walked around upstairs thinking it might go away. I remember taking some rennies, I think I took about 5 rennies and it didn't go. Even standing up didn't make me feel better.

Similarly, Cath also identified a cause but in this case a serious one, she immediately recognised her symptoms as being due to MI and responded by quickly seeking help from family.

However, some women could not readily identify a cause and as such coping responses were more varied and nonspecific. For example, Nell describes how she just felt restless.

Nell (76 years old, widowed, sought help after 1.5–2 h): I laid down and then I sat up again, and I thought I couldn't lay down. I thought at first I'd come to bed too early and yet I felt tired. So I sat up.

Similarly, Katy describes how she got up and had a cold drink in order to try and relieve symptoms of breathlessness and palpitations

Katy (80 years old, widowed): I thought if I got up and had a glass of water, I might feel better, so that was what I did.

Avoidance coping or denial of symptoms was not cited by the women in this study. All attempted to address their symptoms, depending on the perceived cause.

3.3. Appraisal—the influence of family and friends

Stage three of Leventhal and Nerenz' [14] model describes the appraisal of the coping strategies. Individuals evaluate the effectiveness of the coping responses and seek alternative strategies if initial responses are believed to be ineffective. From these data, these women sought an alternative strategy by seeking the help of family or friends. Cath and Helen both sought help from their husbands.

Helen (48 years old, married): I can remember saying to my husband that I'd got this awful pain and he rang Candoc1 because we really didn't know what to do.

Delia who initially attributed the chest pain to a cough and ‘tummy trouble’ finally rang a neighbour when symptoms were not relieved. Pam rang her daughter. In all these cases seeking the help of lay people resulted in them calling for emergency help. Telling a family member, friend or calling for professional help is in itself an act of relinquishing control as part of the appraisal process and recognising that symptoms cannot be managed alone.

Angie and Helen describe the desire to seek a place of safely and the relief in relinquishing control.

On arrival at A&E, Angie describes her thoughts and feelings,

Angie (67 years old, single, collapsed in the street): Well, I don't care what's the matter with me at least it is now in your hands and I can relax. I just felt, good or bad, somebody else is looking after me and then I can stop worrying, whatever is the matter.

Helen (48 years old, married): I knew that if I got there [A&E] then people would know what was going on and I would be safe. I just wanted someone to just sort of click their fingers and say, ‘its OK, you're going to be all right’.

It seems that coping with this critical illness is an immense stressor and relinquishing control is associated with relief.

4. Discussion

In this study, chest pain was the most common symptom experienced which is consistent with the findings of other authors [17,18,20,21]. Shortness of breath, nausea and vomiting, sweating, back pain, arm and shoulder pain or weakness in the arms are also characteristic, all of which were described in this study. Sweating in this sample was often profuse and perceived to be unusual, and as such may be a significant symptom in the development of a serious model of the illness. Restlessness and agitation were cited in this sample but not in the literature. Silent MIs or an MI in the absence of chest pain is most prevalent in older age groups and in those with diabetes mellitus [17]. In this sample, three women experienced no chest pain of which two had diabetes mellitus. In this study age did not seem to influence whether or not chest pain was experienced.

Without exception, there was a perceived lack of susceptibility to MI in this study. This is consistent with published literature [9–12]. This may be related to a general lack of awareness of the risk factors of MI, including family history. It has been suggested that the presence of a family history of the disease is associated with an increased sense of vulnerability [32]. These data in this study do not seem to support this as lack of susceptibility to MI in this sample was perceived by all women, including those with a strong family history of the disease. Perhaps most surprisingly, even those who had a diagnosis of existing coronary heart disease failed to identify themselves of at risk of an MI. Lockyer [12] argues that this lack of candidacy is due to a collective consciousness in society as seeing women as low risk.

In this study, the presence of chronic illnesses for example, diabetes, ulcerative colitis and asthma seemed to make interpretation of symptoms difficult which may have resulted in the development of a less serious model of the illness and consequent delays in seeking help. However, this did not seem to be related to age, in contrast to similar studies [25,14]. Although it is recognised that the presence of co-morbidities is more prevalent in old age, it may not be age per se that makes interpretation of symptoms more difficult. Past experience of MI in this study seemed to prompt immediate treatment-seeking behaviour. This is in contrast to the findings of Dracup and Moser [13] who found that those women who had previous experience of infarct delayed longest due to denial of symptoms. However, it is recognised that, in this study, only one woman had had a previous infarct so this conclusion is necessarily tentative.

Comparison to the experiences of family and friends seemed to influence treatment-seeking behaviour in this study. It seems that individuals make a comparison between their symptoms and the known experience of others. Where symptoms are recognised as similar to that of others, individuals may be more likely to attribute their own symptoms as being due to an MI and seek help early. Conversely, where symptoms are different from the known experience of others, more benign causes for symptoms are identified, at least initially. Petrie and Weinman [32] argue that personal experience of heart disease through a family member seemed to facilitate the development of a serious illness model and reduce treatment delays. However, these data suggest that this may have more to do with the degree of similarity or differences in symptoms.

Most women in this study initially attributed symptoms as being of a benign origin. This is in agreement with the work of Dracup and Moser [13] and Dempsey et al. [19] who reported that most women with MI initially attributed symptoms as being benign. In this study, the exception to this is Cath who had previous experience of MI and Pauline who recognised her symptoms as being the same as a friend's as discussed above.

Coping responses were determined by the perceived cause of the symptoms. For example, when a benign cause was identified such as indigestion, coping responses were initially aimed at relieving symptoms by taking antacids. If the cause was quickly identified as serious and an MI, the response was to seek help immediately. Where a cause could not be readily identified, due perhaps to unusual symptoms, coping responses were more varied and nonspecific such as walking around, resting or having a drink. This type of approach coping has also been described by Meiske [24] who identifies these actions as known responses in acute MI. Similarly Dempsey et al. [19] describes ‘self-treatment’ actions such as taking medication, changing position and having a drink as responses to the health threat. This literature therefore, supports the findings of this study. However, ignoring symptoms as an example of avoidance coping whilst cited in other studies [24] was not apparent here.

Where coping responses are deemed ineffective in dealing with the health threat, alternative coping strategies are adopted, in this case, seeking help from family and friends. In this study, 8 out of the 10 women sought lay help. This is consistent with the findings of Alonzo [26]. In this sample, as in other studies seeking the advice of family and friends resulting in a call for professional help [24,25,27,28], the influence of others is then, a positive one, in terms of seeking treatment and reducing delays. Relinquishing control to health professionals, in this study, was associated with immense relief. It seems that coping with this critical illness is an immense stressor.

To summarise, in this study a range of symptoms were experienced of which chest pain was the most prevalent. Following the onset of symptoms the individual tried to make sense of this by identifying possible causes and explanations for these symptoms. In seeking understanding of the symptoms and identifying that they may be serious, the severity of symptoms; lack of perceived susceptibility; past experience of illness; comparison to the experience of others and the perceived cause seem to be relevant. A lack of perceived susceptibility, the presence of other morbidities of a chronic nature and symptoms believed to be different from the known experience of others may all contribute to the development of a less serious model of the illness and may result in delaying seeking professional help. Severe symptoms, particularly sweating, a previous history of MI and similar symptoms to others may lead to the development of a serious model of the illness and influence more immediate treatment-seeking behaviour.

The outcome of the interpretation of symptoms determines the coping responses including resting, taking medication and having a drink when the health threat is perceived to be benign. When coping responses are deemed to be inappropriate, alternative strategies including seeking help from family and friends are adopted. This is consistent with a self-regulatory model of illness behaviour. The influence of family and friends is a positive one in that professional help is then sought. Relinquishing control to health professionals was associated with a sense of relief.

This is a small-scale research study and as a result, conclusions drawn are necessarily tentative. Data were also collected retrospectively, which may have affected the remembered experience of the illness.

This study highlights a number of implications for professional practice. Women need to have greater knowledge of their level of risk for CHD and associated risk factors through health promotion strategies at a local and national level. At the time of the infarct, women may experience a wide range of symptoms, many of which are unspecific and ‘atypical’ according to the current disease model. Published information and media campaigns need to emphasise the range of possible symptoms and the uniqueness of the individuals experience since individuals may interpret their own symptoms in comparison to the symptoms and experiences of others. The importance of seeking immediate help should continue to be stressed.

The relationships between illness representations and consequent coping responses need further clarification and testing to determine their prevalence in a wider population. The influence of age and the presence of co-morbidities on illness perceptions also need further exploration.

Acknowledgements

The women who agreed to take part in this study; Jane Thackerey and the Cardiac Rehabilitation Team, Canterbury and Coastal PCT. Rona Rubin, Snr. Lecturer, Canterbury Christ Church University.

References