From Bodily Sensations to Symptoms: Health Care–Seeking Practices Among People Affected by Acute Coronary Syndrome

Recruitment and Data Collection

Informants were recruited from the catchment area of the Central Jutland Regional Hospital, which serves patients from a large part of the central Denmark region, comprising both urban and rural areas. We recruited 17 men and women above the age of 18 (no upper age limit) who had been diagnosed with and hospitalized for ACS and whose decision to contact health care in the prehospital phase involved a bystander. The informants were included successively, as we made no strategic recruitment based on gender, age, or social status, based on the assumption that the phenomenon examined was universal in the population and not dependent upon such factors. A further requirement was that informants should be able to understand and speak Danish adequately and be physically and mentally able to participate in an interview.

The recruitment was carried out by two project nurses employed in the cardiac unit. The project nurses identified, contacted, and informed potential informants verbally and in writing about the project. Patients who agreed to participate were then screened according to our inclusion criteria. Subsequently, the screening forms together with the informed consent forms signed by the participating informants were distributed equally between the three authors. Patients were contacted by telephone 4 weeks after their discharge from hospital to agree an interview time with the patient and with her or his bystander(s). The patients themselves contacted the bystander(s) who had been involved in their decision to seek medical help.

Interviews were conducted 1 to 2 months after discharge during the period June 2016 to June 2017. Both the patient and her or his bystander(s) participated in the interview. Fourteen of the interviews were conducted with one patient and one bystander, whereas three were conducted with one patient and two or three bystanders. With the exception of one (a neighbor), all the bystanders were close family members (partners, sons/daughters, children-in-law). The interviews took place at a location of the patient’s choosing. All except two interviews were conducted in the patient’s home: one of these was conducted in a bystander’s home, the other at the research center. ¹ The 17 patients were between 45 and 85 years old (M age = 67 years). Fourteen were males and three females. All interviews were digitally recorded and subsequently transcribed verbatim.

The interview guide was constructed in accordance with guidelines for qualitative interviewing (Brinkmann & Tanggaard, 2015; Halkier, 2008) and was also informed by our initial research interest in the experiences and the decision-making processes of the patients in relation to their contact with the health care system. In particular, the interview topics focused on the following: How was the contact initiated? Which persons participated? What was the nature of the interaction between the person with ACS symptoms and the bystander(s) in the prehospital phase?

During the interview process, we became aware of the limitations of our approach with regard to conceptualizing the prehospital phase in terms of delay, cognitive symptom recognition, and decision-making. The informants told us stories that were much more multifaceted and complex than the medically informed approach and its concepts could cope with or express. In accordance with the exploratory nature of qualitative research and the concept of the researcher as a “traveler” (Kvale & Brinkmann, 2009, pp. 66–68), we followed the informants on their retrospective journeys to broaden our understanding of health care–seeking practices among the informants.

Ethical Aspects

Prior to project launch, the relevant permissions granting access to work within the field were obtained from the clinical partners involved in the collaboration. All informants (patients and bystanders) were verbally briefed and received written information about the project’s aims, processes, and procedures. Participation was voluntary, and those invited to participate were informed that they were at liberty to withdraw from the study at any time, if they wished. Written consent was obtained from all informants. Complete anonymity was ensured throughout the study for all participants, as stipulated in the Danish Act on Processing of Personal Data (Department of Justice, Denmark, 2018). The project was registered with the Danish Data Protection Agency (reference number: 1–16–02–292–16).

Data Analysis and Analytical Perspectives

In the first phase, we systematically extracted information concerning age, gender, symptoms, symptom interpretation, and health care–seeking practices prior to hospitalization to gain an overview. From this first extraction, we identified four salient features across the 17 interviews. These are presented below in the first part of the “Findings” section.

A second analytical process, moving back and forth between empirical data, theoretical concepts, and interpretations, then followed. Through this process of in-depth analysis, the salient features from the first analysis phase were further nuanced and conceptualized. In this phase, the analysis moved from the informants’ own words and self-understandings to what Kvale and Brinkmann (2009) refer to as critical common-sense understanding and theoretical understanding.

In this phase, moving toward a theoretical understanding (Kvale & Brinkmann, 2009), we drew on theoretical literature from the field of medical anthropology on symptom experiences (Andersen et al., 2017; Hay, 2008; Offersen, Bech Risør, Vedsted, & Sand Andersen, 2016). In particular, we drew on Cameron Hay’s (2008) distinction between sensations and symptoms, and on her exploration of the process by which a sensation becomes transformed into a symptom. According to Hay, “[a] sensation is embodied; it is felt experience. By contrast, a symptom is a constructed and socially informed cognitive interpretation that indexes but is not itself an embodied sensation” (p. 221). Sensations never begin as symptoms. They only become symptoms post hoc, that is, after being interpreted as abnormal. This interpretation is, according to Hay, socioculturally informed. According to Hay, bodily sensations are interpreted as symptoms and are accordingly considered as concerns only if (a) a person assesses them as augmenting his or her sense of vulnerability, (b) they exceed normal expectations for duration, or (c) they are disabling beyond what could be considered normal (Hay, 2008). Hay’s argument is that the transformation from sensation to symptom is socially dependent, because the interpretation must be socially legitimated for the transformation to be completed. Consequently, the interpretation is always tentative, and in fact remains open to reinterpretation depending on cultural knowledge and social interaction. Consequently, it is based on people’s judgments that a sensation exceeds acceptable temporal spans or disabilities, or that it fits within their expectations based on experiences of vulnerability, that people seek care (Hay, 2008).

We drew additionally on Offersen et al. (2016), whose work was influenced by the medical anthropology of sensations as suggested by Hay. Within the field of cancer diagnostics in Denmark, Offersen et al. explored “the uncertainty and ambiguity that exists in the space between bodily sensations and symptoms of illness” (p. 23) in the context of middle-class everyday life. According to Offersen et al., middle-class everyday life is characterized by aiming for “the ordinary” everyday life, and additionally by an ongoing process of interpretation of ambiguous sensations. In this view, bodily sensations contain different forms of potentiality:

Depending on the specific time and place where a bodily sensation is experienced by an individual subject - and thus constituting the liminal space between sensation and symptom or “non-symptom” – the various potentialities will take on different weight and constitute the perception of potentiality of the sensation. (Offersen et al., 2016, p. 31)

This research influenced our decision to consider the period prior to initiating contact with the health care system as a period of essential uncertainties and the effort to control them.

Throughout the entire process, the three authors discussed themes, interpretations, and findings to ensure the validity of their analyses.

The Transformation of Sensations to Symptoms in the Context of Everyday Ordinariness

A feature of our research design was that all informants (patients and their friends and relatives) were asked to recall their experiences, thoughts, and reactions from a period before the transformation of sensations into symptoms. In this sense, the informants’ answers are retrospective narrations of the “before” period: They have been reconstructed in light of the informants’ current knowledge that the sensations were actually symptoms of ACS. To cite Hay, “The ambiguous sensations have been indexed” (Hay, 2008, p. 221). Despite this, our data are rich in descriptions of the process as a constant negotiation with oneself, a process in which emotions, experiences, and rationality are constantly in play.

For example, one of the informants (Informant 5) told us that the month before he was hospitalized, he had been experiencing some discomfort in various parts of his chest. It got worse, and in the course of a few days, the pain started to spread to his left shoulder; he had difficulty breathing and he felt increasingly tired. His wife thought the symptoms were caused by his chronic obstructive pulmonary disease (COPD) and was irritated that he took so little exercise; the informant thought it would pass. Finally, after a month, he felt so poorly that his wife called the out-of-hours general practitioner (GP) as he did not have the strength to do so himself. The informant continued to say that he was sure it would pass; all the same, his wife rang for the doctor. When he was asked whether this was the first time that he had experienced these symptoms, he said yes:

Interviewer: You are saying that you had never experienced anything similar before?

Informant: No, I hadn’t. I have obviously been aware of it, precisely because it is . . . it is a family weakness. My mom died at 41 and her dad at 48 and her mom at 52. It’s something to do with the circulation and things like that.

Interviewer: What did you think yourself when you became so poorly?

Informant: Not anything really. I thought it might be something that had got caught, muscle pain or something like that.

Wife: I thought it was very unlike him to be feeling how he was feeling. I had a father-in-law and when he had a heart attack he was screaming and shouting—he was certainly in a lot of pain. It was nothing like that, but I still thought that it was probably best if I call [for help].

The period of what in the field of cardiology is termed prodromal symptom was reported by the informants as lasting between 1 week and 2 years. Only one of the patients reported “classic” symptoms of acute indisposition and strong heart pain. For some patients, the bodily sensations were of concern and, to some extent, impeded their day-to-day activities; yet, at the same time, they were interpreted as changes in already known disorders. This could be interpreted as an aim for the ordinary in everyday life as described by Offersen et al. (2016). Drawing on Offersen, we consider our study to be focusing on a dramatic event against a background of everyday, unremarkable ordinariness. Looking back, all of us, including the patients, now know that the blurred and ambiguous sensations were actually symptoms of a potentially fatal disease. Despite their current knowledge, however, the informants described very clearly how, during the prehospital phase, they kept interpreting their bodily discomfort as symptoms of already known disorders. It is clear to us that in doing so, they were trying to downplay any drama and to preserve everyday ordinariness. For example, one patient’s wife stated that her husband had said, “Oh there is something that has got struck,” because he had previously suffered from several disk prolapses in his back.

Another woman said,

I lost the power of my hands, tenderness, and had trouble holding things, simply holding a cup could be difficult, I simply did not have the strength [. . .] Actually, I was thinking: it does fit a bit with what I had a year ago, it was at the same time, it’s probably some arthritis. It fits with it had started to get cold—and things like that.

When the pain became more intense, she thought it was probably carpal tunnel syndrome.

According to Hay, the process of interpretation is shaped by the application of cultural knowledge and by social interaction. Sensations only become symptoms when others legitimate them as significantly affecting one’s being-in-the-world (Hay, 2008). At first glance, however, we did not find that social legitimacy featured in our study. On the contrary, as reported above, the patients typically neglected to ascribe their sensations to the heart, despite the fact that their friends and relatives had expressed their concerns and their own heart-related interpretations. In our empirical setting, therefore, social legitimacy seemed to be less important than Hay suggests. Most patients did not seek social legitimacy for their symptoms. Some of them simply tried to hide and play down their discomfort and concerns. For example,

Interviewer: You didn’t seek medical advice?

Patient’s wife: No, because it would just go away again, you know? And we don’t like to make a fuss. It’s like what we say about dogs: if a man can eat and shit, then he’s all right.

This can, however, be interpreted as a more subtle expression of the significance of social legitimacy. Aiming to preserve ordinary everyday life, the patients attempted to avoid the “pressure” of a potential shared interpretation that the bodily sensations were related to more serious illness. Therefore, it is fair to say that social legitimacy did feature, but only by working the other way around: A sensation interpreted as a symptom remains open to reinterpretation if not socially legitimated (Hay, 2008). In this way, hiding or downplaying the bodily discomfort hinders the anxiety-provoking interpretation that the bodily sensations are symptoms of something serious or life threatening.

Sense of Vulnerability

The first phase of our analysis had revealed that the five patients who did ascribe their uncomfortable bodily sensations to heart disease had previously been diagnosed with ACS, whereas patients with a known family predisposition to ACS did not interpret their discomfort as symptoms associated with the heart. Drawing on Hay, we interpret this as an expression of the patients’ sense of vulnerability. According to Hay, one of the prerequisites for someone to interpret bodily sensations as symptoms is that they assess them as augmenting his or her sense of vulnerability. Vulnerability plays an important role in the interpretation of sensation. It can be deeply personal and indeed unique and it stems from, among other things, a dynamic interplay of an individual’s personal past experiences: “The closer the sensations match a known vulnerability, the more likely they are to be interpreted as symptoms” (Hay, 2008, p. 210). In our data, the crucial personal past experience seems to be the individual’s concrete and lived experience, whereas abstract knowledge of a statistical risk of future health problems did not engender the same sense of vulnerability.

Accordingly, patients who had been previously diagnosed with other health problems interpreted their bodily sensations as symptoms of those conditions. For example, one informant who was convinced that he would not develop ACS because he was on blood thinners attributed his symptoms to the condition he knew he had: gastritis. This illustrates, as Hay (2008) suggests, that every person has an internalized and dynamic set of perceived illnesses to which they feel vulnerable, and that this unique sense of vulnerability catalyzes people to seek answers to or explanations for what they have come to see as either symptoms or harbingers of illness. What in the medical-informed literature is perceived as being caused by interpretative incompetence emerges in this perspective as an example of the complexity of the symptom interpretation process, particularly for people experiencing comorbidity.

Disabling Beyond What Can Be Considered Normal

The usual practice across all our subjects of ignoring or excusing their bodily discomfort and expecting or hoping that it would pass appears to have been a process of negotiation and interpretation, which continued to hold up to the point when bodily discomfort reached a level that was impossible to ignore. Thus, the decision to contact the health care system was made as a result of bodily discomfort rather than any rational decision to try to reduce risk. For example, one patient hoped that the pain would pass if he went out to work in his old car. But it did not. He began to sweat profusely and became dizzy. “I didn’t realize anything was wrong until ten minutes before the ambulance came.” This is in line with Hay’s (2008) observation that sensations are evaluated in terms of how disruptive they are of a person’s daily activities. Mild sensations, or those that do not significantly impair people’s ability to go about their daily tasks, are less likely to be considered symptoms, whereas seriously disruptive sensations tend to be rapidly reinterpreted as symptoms worthy of outside attention. However, we found that some of our informants had endured even very disabling symptoms without contacting the health system. For example, the man previously mentioned who thought he might have gastritis lived with strong pain for a week. He managed to do his job as a teacher by holding onto the blackboard to remain standing. One morning, he called the GP and got an appointment for the afternoon. He waited for 6 hours, sitting in an armchair, struggling with the pain. Then, he drove himself to the doctor, and was immediately hospitalized.

Due to the specific disease progress of ACS, the time span from what in the field of cardiology is termed prodromal symptom to a life-threatening and seriously disabling symptom can be quite short. Thus, most of the informants’ narrations included a process of blurred and ambiguous “noise” from the body, until this phase was replaced by an abrupt change to intense or unbearable bodily discomfort. Some of the patients were in intense pain, others collapsed and lost consciousness. Not until this phase did the informants stop ignoring their bodily sensations and agree with the people around them to contact the health care system.