EMPIRICAL STUDIES
doi: 10.1111/scs.12286
Women’s help-seeking behaviour during a first acute myocardial infarction € rck RN, PhD (Senior Lecturer)1,2, Susanne Nielsen RN, MSc Anna Gyberg RN, MSc (PhD Student)1, Lena Bjo €a €tta € RN, PhD (Senior Lecturer)1 and Kristin Falk RN, PhD (Senior Lecturer)1 (Researcher)2, Sylvia Ma 1
Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden and 2Department of Molecular and Clinical Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
Scand J Caring Sci; 2015 Women’s help-seeking behaviour during a first acute myocardial infarction Studies indicate that the time from onset of symptoms to medical treatment has decreased in acute myocardial infarction (AMI). However, there are still variations indicating that women wait longer than men before making the decision to seek medical care. Multidimensional factors hindering and facilitating the decision have been identified in previous studies, though few have fully explored how social context affects women’s expectations, interpretations and actions and so influences the decision-making process. The aim of this study was therefore to identify how women’s experiences interacted and influenced the decision to seek medical care at their first AMI. Seventeen women, aged 38–75 years, were interviewed, at home or in the hospital, between June 2011 and May 2012. Grounded theory was used as a method, and data collection and analysis were carried out simultaneously. The results showed that before deciding to seek medical care, these women went
Background Incidence of coronary heart disease has decreased steeply during the last three decades, but it remains the most common cause of both morbidity and mortality in Sweden and elsewhere (1, 2). An important predictor for morbidity and mortality in patients with acute myocardial infarction (AMI) is time to treatment (3, 4). Patient delay has therefore become an important concept when studying time from onset of symptoms to contact with medical care and treatment. Earlier studies have shown that prehospital delay is associated with older age, diabetes, ethnicity, cultural background, educational level and other socio-economic factors (5–12). Correspondence to: Anna Gyberg, Sahlgrenska University Hospital, Diagnosv€ agen 11, Gothenburg 41685, Sweden. E-mail: [email protected] © 2015 Nordic College of Caring Science
through three defined but interrelated processes that together hindered their normal activities and made them act according to existential needs. The women’s experiences of the progression of the disease, in terms of both symptoms and time, were very different, so they sought medical care at different times, sometimes life-threateningly late and sometimes before developing an AMI. Three mechanisms had to coincide if the women were to receive medical care. First, the women had to acknowledge their symptoms as something more than common bodily changes. Second, the healthcare system had to be accessible when the women made their decision to seek care. Third, the women must have come into contact with healthcare providers when the heart muscle had taken enough damage to measure. Keywords: decision-making, gender, healthcare-seeking, grounded theory, women’s health, acute myocardial infarction. Submitted 22 January 2015, Accepted 4 August 2015
Results from previous studies show an inconsistency about whether gender has an impact on delay. Some studies have presented no differences between women and men (6, 13, 14) while others have reported that women wait longer than men before seeking medical care (5, 7–11, 15, 16). Previous studies on women’s decisions to seek medical care show that the process depends on how women interpret, explain and manage symptoms from an AMI (17–22). When women experienced symptoms as harmless, they believed that they were not at risk of AMI, which led to further delay (19, 20, 22). Moreover, as long as the women interpreted their symptoms as harmless, they tended to continue with their family responsibilities or other daily activities (17, 22–24). Moving from interpreting symptoms as harmless to seeing them as threatening is a common way to describe the decisionmaking process and has been explained by the intensity 1
2
A. Gyberg et al.
of the symptoms (17, 25). Even when the women realised that they needed medical care, they were still unwilling to disclose their experience to people around them (25, 26). Other reported factors that hinder women’s decision process include feelings of being a burden to others, especially if the symptoms turned out to be a false alarm (17, 25). Asking for help was found to relate to anxiety and fear caused by feelings of losing control (20, 22). Speaking about perception of illness to family and friends has been shown to lead to a faster decision to seek care (20). However, results indicate that it is more common within a relationship for women to encourage men to seek care than the reverse (27, 28). Previous research shows a complex decision-making process influenced by interpretations, beliefs and social interactions with others when women experience symptoms from an AMI. Earlier studies mainly explored which factors hinder or contribute to the decision to seek medical care. It is not fully understood how these hindering or contributing factors are related to social context, such as interactions and communications with the surrounding world, and how this influences the decision-making process. The aim of this study was therefore to identify how women’s experiences interacted and influenced the decision to seek medical care at their first AMI.
Methods Constructivist grounded theory (29) was used to study the meaning behind actions, with an abductive logic. This theory views data as problematic, because data are constructed through interactions between informants and researchers. This opens up questions about the viewers’ standpoint and also the circumstances of the informants. Interpretations of data were therefore tested iteratively in the field, to help understand different experiences. The viewer, for example, looks for tacit meanings behind actions to understand the consequences of sociallyconstructed discourse, and so learns how meaning is constructed (29, 30).
Sample and settings Eligible subjects were any women who had undergone an AMI for the first time, were between 18 and 75 years of age and could speak and understand Swedish. Members of the research team gave information about the study to patients in coronary units who met the inclusion criteria and asked them to participate. Seventeen women agreed to participate, and the first author contacted them, making an appointment to carry out an interview, within 3 weeks of admission to hospital. The women’s ages ranged from 38 to 75 years with a median age of 64. Eight were retired and nine were working part- or
full-time. Eleven were in a relationship and five had children living at home. Ten women were interviewed in their homes, six in hospital before discharge and one in hospital after discharge.
Data collection Women’s experiences of AMI were gathered by interviews carried out between June 2011 and May 2012. The tape-recorded interviews lasted between 25 and 140 minutes. All interviews opened with the question: ‘Tell me from the beginning about when you had the heart attack’. Further the meaning behind the decisionmaking process was explored by follow-up questions, depending on what the women brought up. Examples of these questions were as follows: ‘How did that make you feel?’, ‘What did you think when. . .?’ and ‘What did you do when. . .?’ The interviews lasted until the women and the researcher felt there was nothing more to tell.
Data analysis Data analysis evolved during data collection. Interpretations of data were converted into codes, categories and tentative concepts, periodically reviewing the codes as new perspectives developed through constant comparative reading. This formed the foundation for the construction of categories. Members of the research team explored similarities and differences between codes and categories and tested the emerging tentative concepts through theoretical sampling of new data, collected by subsequent interviews with more focused questions. By constant comparative reading, categories became more rigorous until saturation was reached, that is, no further insights were revealed. Quotes from different categories presented in these findings have been de-identified.
Ethical considerations The study plan was approved by the Regional Ethics Board of Gothenburg (approval number: 352-11). Written and verbal information was given to participants before the interviews, emphasising their right to withdraw at any time and without any further explanation. Additionally, before signing the consent, the participants were informed that if the interview provoked inconvenience or strong feelings, professional support could be given if needed. By signing the consent, the women were made aware that quotes could be published but not possible to relate to any individual.
Results The core of the women’s decision-making process was a change in their view of their ability to carry on as © 2015 Nordic College of Caring Science
Women’s help-seeking behaviour during a first AMI normal, from a retrospective to a prospective perspective. This change was a construction of actions, thoughts and emotions that the women experienced from symptom onset to the decision to seek medical care. The women characterised their symptoms as recurring, insidious and suddenly accelerating. Symptoms as the driving force are in this context divided into three levels, based on the women’s perception of them: nonintriguing symptoms, symptoms interfering with normal activities and symptoms intruding on life (Fig. 1). Seen together, they outline a process, where symptoms move from being perceived as harmless to being alarming. Each level contains three dimensions that are vertically dependent and horizontally follow the qualitative leaps towards the decision to seek medical care.
Nonintriguing symptoms Reinforcing harmless explanations. As long as they perceived their symptoms as harmless, the women made a variety of interpretations that were based on earlier experiences or assessments and other people’s reactions. During symptoms, earlier similar bodily experiences brought feelings of recognition, which reinforced simple explanations like stress or a sore muscle. Stress as an explanation could be supported by a sensation of having had a hard time lately, and a sore muscle was perceived as logical when thinking about recent exercise. They based other explanations on previous assessments made by healthcare professionals. Earlier diagnoses, such as osteoarthritis, gastritis and chronic obstructive lung disease, tended to create presuppositions of causes behind symptoms.
And everything sprung from my belief that I was sick with gastritis again. I very easily come down with gastritis when I’ve been stressed and worried and thought about things like that. It’s typical, nothing new to me. So everything had settled this summer and everything felt fine, and then this shows up, and I just expected it to be gastritis again. (W4) Friends’ and relatives’ reactions to the women’s symptoms also affected the reinforcement of simple harmless explanations. Relying on old habits. As long as they were able to find a harmless explanation, the women tended to rely on familiar remedies and their own capabilities to manage health problems. This was substantiated by earlier experiences of successful management of symptoms, and a perception of being someone who always had been able to manage situations. And since I was half asleep I wasn’t totally aware, but I know that you should breathe deeply, breathe out like this, in and out, and I kept on like that for a while and after, I don’t know, but it passed. So there was nothing more to it, I didn’t care. (W15) Harmless explanations did not necessarily lead to actions; they could also find confidence in the belief that situations tend to improve, which in turn led to wishful thinking and hope that symptoms would pass. Having recurring symptoms reinforced this behaviour. Performing normal activities. In spite of their symptoms, the women felt healthy. They did not associate having an appetite and sleeping well with being ill, which explains why they continued with their normal activities.
From a retrospective to a prospective perspective
Figure 1 The progression of the decision-making process based on the interconnected concepts. © 2015 Nordic College of Caring Science
3
Non-intriguing symptoms
Symptoms interfering with normal acƟviƟes
Symptoms intruding on life
Reinforcing harmless explanations
Recognising unfamiliar bodily changes
Coming to a point beyond recognition
Relying on old habits
Dealing with discomfort
Realising nothing helps
Performing normal activities
Struggling to keep one’s life in order
Being unable to perform normal activities
8
14
15
16
17
18
19
20
21
A. Gyberg et al. time acute myocardial infarction. Eur J Cardiovasc Nurs 2007; 6: 308–13. Rasmussen CH, Munck A, Kragstrup J, Haghfelt T. Patient delay from onset of chest pain suggesting acute coronary syndrome to hospital admission. Scand Cardiovasc J 2003; 37: 183–6. Kaul P, Armstrong PW, Sookram S, Leung BK, Brass N, Welsh RC. Temporal trends in patient and treatment delay among men and women presenting with ST-elevation myocardial infarction. Am Heart J 2011; 161: 91–97. Annual report SWEDEHEART 2012– 2013, http://www.ucr.uu.se/swedeheart/index.php/arsrapporter (last accessed 22 January 2015). Isaksson RM, Brulin C, Eliasson M, Naslund U, Zingmark K. Older women’s prehospital experiences of their first myocardial infarction. J Cardiovasc Nurs 2013; 28: 360–9. Davis LL, Mishel M, Moser DK, Esposito N, Lynn MR, Schwartz TA. Thoughts and behaviors of women with symptoms of acute coronary syndrome. Heart Lung 2013; 42: 428–35. Gallagher R, Marshall AP, Fisher MJ. Symptoms and treatment-seeking responses in women experiencing acute coronary syndrome for the first time. Heart Lung 2010; 39: 477–84. MacInnes JD. The illness perceptions of women following symptoms of acute myocardial infarction: a selfregulatory approach. Eur J Cardiovasc Nurs 2006; 5: 280–8. Ottesen MM, Dixen U, Torp-Pedersen C, Køber L. Prehospital behaviour of patients admitted with acute coronary syndrome or witnessed cardiac arrest. Scand Cardiovasc J 2003; 37: 141–8.
22 Sjostrom-Strand A, Fridlund B. Women’s descriptions of symptoms and delay reasons in seeking medical care at the time of a first myocardial infarction: a qualitative study. Int J Nurs Stud 2008; 45: 1003–10. 23 Johansson I, Swahn E, Stromberg A. Manageability, vulnerability and interaction: a qualitative analysis of acute myocardial infarction patients’ conceptions of the event. Eur J Cardiovasc Nurs 2007; 6: 184–91. 24 Turris SA, Finamore S. Reducing delay for women seeking treatment in the emergency department for symptoms of potential cardiac illness. J Emerg Nurs 2008; 34: 509–15. 25 Herning M, Hansen PR, Bygbjerg B, Lindhardt T. Women’s experiences and behaviour at onset of symptoms of ST segment elevation acute myocardial infarction. Eur J Cardiovasc Nurs 2011; 10: 241–7. 26 Galdas PM, Johnson JL, Percy ME, Ratner PA. Help seeking for cardiac symptoms: beyond the masculinefeminine binary. Soc Sci Med 2010; 71: 18–24. 27 Atzema CL, Austin PC, Huynh T, Hassan A, Chiu M, Wang JT, Tu JV. Effect of marriage on duration of chest pain associated with acute myocardial infarction before seeking care. CMAJ 2011; 183: 1482–91. cmaj.110170. 28 Brink E, Karlson BW, Hallberg LR. To be stricken with acute myocardial infarction: a grounded theory study of symptom perception and careseeking behaviour. J Health Psychol 2002; 7: 533–43. 29 Charmaz K. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. 2006, SAGE, London. 30 Morse JM. Developing Grounded Theory: The Second Generation. 2009, Walnut Creek: Left Coast Press.
31 McSweeney JC, Cody M, O’Sullivan P, Elberson K, Moser DK, Garvin BJ. Women’s early warning symptoms of acute myocardial infarction. Circulation 2003; 108: 2619–23. 32 Hwang SY, Zerwic JJ, Jeong MH. Impact of prodromal symptoms on prehospital delay in patients with first-time acute myocardial infarction in Korea. J Cardiovasc Nurs 2011; 26: 194–201. 33 Hajdarevic S, Schmitt-Egenolf M, Brulin C, Sundbom E, Hornsten A. Malignant melanoma: gender patterns in care seeking for suspect marks. J Clin Nurs 2011; 20: 2676–84. 34 Moloczij N, McPherson KM, Smith JF, Kayes NM. Help-seeking at the time of stroke: stroke survivors’ perspectives on their decisions. Health Soc Care Community 2008; 16: 501–10. 35 Hofgren C, Karlson BW, Herlitz J. Prodromal symptoms in subsets of patients hospitalized for suspected acute myocardial infarction. Heart Lung 1995; 24: 3–10. 36 Graham MM, Westerhout CM, Kaul P, Norris CM, Armstrong PW. Sex differences in patients seeking medical attention for prodromal symptoms before an acute coronary event. Am Heart J 2008; 156: 1210– 6.e1. 37 Jutel A, Nettleton S. Towards a sociology of diagnosis: reflections and opportunities. Soc Sci Med 2011; 73: 793–800. 38 Travelbee J. Interpersonal Aspects of Nursing. 1971, Davis, Philadelphia, Pennsylvania. 39 Werner A, Malterud K. It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors. Soc Sci Med 2003; 57: 1409–19.
© 2015 Nordic College of Caring Science
Women’s help-seeking behaviour during a first AMI you?” I say “It hurts so, something is wrong, because it can’t be like, nothing”. Then the bell of my daughter-in-law’s words rang. Her words rang inside my head, because I had told her yesterday about the painkillers I had taken and that they had worked. She said “then there is nothing dangerous, if it resolves. If it had been your heart it wouldn’t have mattered whatever you took.” (W1) With intense and persistent symptoms, the women had no choice other than to seek medical care. Being unable to perform normal activities. Being unable to perform daily activities was a result of losing control over the body. Even though the women were thinking about what they were going to do next, the body did not respond the way it was supposed to. I became afraid in terms of thoughts like now I can’t take myself to bed, and if I can’t get out of my bed, how will I survive then? (W17) At this point, the reluctance to go to the hospital usually disappeared, and if not, the women could be persuaded. They were often convinced to seek medical care when thinking, or being assured by others, that the step was not that great. Mentally minimising the gap between their normal activities and a visit to the hospital made the decision easier. But I am lucky. I have a manager who didn’t give up. She said “We can keep talking. We drive to the hospital and you can talk on the way there. Then they will take a blood sample and if it turns out it’s nothing we can go home or back to work.” Yes, I could agree to that. (W16) Many of the women also felt that life was not worth living with this unbearable struggle, which also helped them make the decision to seek help.
Discussion The women talked about their experiences as having started either the same day as they sought medical care, a month earlier or even a year earlier. Whether the symptoms throughout the whole process originated from the heart is difficult to know. However, the women retrospectively associated the symptoms with the AMI, which supports earlier results that prodromal symptoms, or preinfarction angina, are common more than a month before AMI (31, 32). Symptoms were experienced over different lengths of time and the character of the symptoms fluctuated over time in terms of intensity, duration and severity. This made it difficult for the women to know exactly when to seek medical care. Hindering and facilitating factors influencing the decision-making process identified in this study are congruent with earlier studies and include symptoms explained as harmless or related to previous discomforts or diagnosis (19, 22). To © 2015 Nordic College of Caring Science
5
interpret milder or elusive symptoms as a nonthreat is not specific to cardiac events, but also to other diseases such as stroke or cancer (33, 34). Like previous research, our results show that the decision to seek medical care is grounded in experiences, interpretations, perceptions and in the context of everyday life (17, 20, 22). Furthermore, earlier studies support our findings that even though symptoms intensified the women struggled to keep up with everyday activities due to responsibilities at home or at work (17, 18, 24). In the overall process, in the present study, the women could not have known when their perceived symptoms turned into an actual AMI. This consequently made them seek medical care at different times in relation to the disease progression, sometimes life-threateningly late and sometimes before developing an AMI. There are three mechanisms that unconditionally had to coincide for the women to receive appropriate medical treatment. First, the women had to acknowledge their symptoms as something significantly different from common bodily changes and because of that, overcome barriers to interrupt their everyday life. This was found to be most problematic in the second phase (symptoms interfering with daily life). In this phase, some women avoided seeking medical care, but others overcame barriers and did seek help. Second, the healthcare system had to be accessible and women had to understand how, where and when to seek medical care. Third, the women had to come in contact with the healthcare system at a time when there were objective signs of an AMI. The timing of these three mechanisms is crucial. Those who overcame barriers had different strategies to come in contact with the healthcare system. Some called for an ambulance, and some took the car to the emergency department. Others contacted primary care and had to wait hours or days before seeing a physician, with some collapsing while waiting. What determined which path they took depended on how they interpreted their symptoms and their understanding of the healthcare system. Of those who came in contact with a physician in the second phase, only some presented with objective signs of an AMI. An aggravating consequence among those who did not present objective signs was that they received prescriptions or advice that had nothing to do with AMI. This caused the barriers to grow when experiencing the same symptoms again. Their belief in their own ability to identify significant symptoms was also reduced. A fast decision to seek care will therefore not be much help if there are no objective signs to present. The women in this study could not have known when their perceived symptoms turned into an actual AMI, which indicates that there were hazardous discrepancies between the women’s perceived health condition and objective signs interpreted by healthcare professionals. To reduce this gap, symptoms must be viewed as important and valued
6
A. Gyberg et al.
higher during the diagnostic process (17). Prodromal symptoms are common in women (95%) (31). Hwang et al. (32) concluded that 40% of AMI patients visited a clinic owing to prodromal symptoms. Women also have more prodromal symptoms than men and are more likely to seek medical attention for them (35, 36). An improved dialogue about perceived symptoms may contribute to decreasing the discrepancies and healthcare professionals recognising that women with suspected prodromal symptoms may be at imminent risk of an AMI. Earlier contact with healthcare professionals without objective signs of an AMI reduced the women’s ability to identify symptoms as significant. In interaction and communication with healthcare professionals, the women’s experiences were subordinate to objective signs, which is consistent with Jutel and Nettleton’s findings (37). This draws attention to how symptoms and experiences are discussed during encounters with healthcare professionals since patient’s experiences and perception are central from a holistic point of view within caring science. Travelbee (38) states that interactions should be seen as means to identify each individual’s needs since this is a prerequisite of being able to plan and perform care. To not be aware of interactions and communication as means can lead to the consequences that care are being performed from interests of others instead of the patient’s (38). The women’s expectations that the symptoms had to be serious or important enough to be viewed as something real by healthcare professionals has been identified as a dimension emerging from normative, biomedical expectations (39). It is also reported that this can provoke feelings such as shame, indignity and disempowerment, which make individuals put major efforts into trying to work out how to behave so that they will be listened to before seeking medical care and during encounters with healthcare professionals (39). Delay cannot only be explained by individuals’ behaviour or rational decisions made from different choices in a complex context. This way of viewing the process will not lead to revolutionary changes in time to treatment. Illness cannot be separated from its social context, of which the healthcare system is a major part. Our findings indicate that there are unreasonably high expectations on women to know exactly when to seek medical care.
Strengths and limitations Data from interviews with 17 women gave a wide variety of experiences, which strengthens its trustworthiness. One potential limitation could be that the data were gathered retrospectively. However, all of the interviews were conducted within 3 weeks of hospitalisation, which should reduce recall bias. All of the interviews were performed by one person. The women were able to choose the location of the interview, and interviews took place
both at the hospital and in women’s homes. Regardless of where the interviews took place, the aim was to find a quiet and peaceful environment and to preserve the women’s integrity. To strengthen the credibility of the analysis process, all the authors were involved in a research triangulation. The wide spread of participants’ ages increases the likelihood of being able to generalise these findings to other women in the same situation. Only one of the participants was not born in Sweden, so the results may be less transferable to women with other ethnic backgrounds. To conclude, our findings are particularly important for what they show about the necessity for improved communication between women seeking care for nonsignificant AMI symptoms and healthcare professionals.
Conclusion Persisting and intensified symptoms were found to be the main force behind the decision-making process. The findings show that the women continued to prioritise daily activities as long as they did not acknowledge their symptoms as abnormal or threatening. Instead, they tried to alleviate the symptoms on their own. In other words, they did not seek medical care straight away since this implied an interruption of their daily life. Different experiences and situations came to steer when and how the decision to seek medical care was made. The women were unaware of the severity of the symptoms, something which prolonged the time between onset of symptoms and contact with the healthcare system. The women’s hesitation to seek medical care was strengthened by for example having had their symptoms labelled as vague or less serious in previous contacts with the healthcare system. They also worried that hospitalisation would lead to a loss of individual independence. Consequently, depending on how the women interpreted their symptoms and how they understood the healthcare system, the women sought medical care at different times. Sometimes this was life-threateningly late and sometimes it was before developing an AMI. The women were clearly unaware of the AMI’s progression, making the issue of time passing irrelevant. Viewing the timing of the three described mechanisms as a central part of delay means that it is impossible to expect the individual to know exactly when to seek medical care.
Clinical implications Making the healthcare system more comprehensible and accessible might decrease the perceived barriers to seeking care, though normative expectations among healthcare professionals and women also need to be made aware of. Since symptoms were found to be the driving force behind the decision-making process, the women’s © 2015 Nordic College of Caring Science
Women’s help-seeking behaviour during a first AMI narratives need to be viewed as significant during encounters in the healthcare system. The findings that objective signs tend to legitimise the significance of symptoms affect the decision-making process. One way for healthcare professionals to break this normative tendency is by acknowledging patient’s narratives and viewing their experienced symptoms as equally important as signs. To distinguish signs from symptoms, and to value them as equally important, might contribute to a faster decision-making process when symptoms reoccur, but also incorporate the feeling of being believed, and that the perceived symptoms are real, with or without signs. The findings in the present study indicate that there is an unreasonably high responsibility resting on the women to know exactly when to seek medical care.
Author contributions Anna Gyberg is the corresponding author. She was involved in the design of the study, carried out all interviews and drafted the majority of the interview reports and the manuscript. Lena Bj€ orck initiated the study and
References 1 Berg J, Bjorck L, Lappas G, O’Flaherty M, Capewell S, Rosengren A. Continuing decrease in coronary heart disease mortality in Sweden. BMC Cardiovasc Disord 2014; 14: 9. 2 Allender S, Scarborough P, Peto V, Rayner M, Leal J, Luengo-Fernandez R, Gray A. European cardiovascular disease statistics. European Heart Network 2008, http://www.ehnheart.org. (last accessed 22 January 2015). 3 Cannon CP, Gibson CM, Lambrew CT, Shoultz DA, Levy D, French WJ, Gore JM, Weaver WD, Rogers WJ, Tiefenbrunn AJ. Relationship of symptom-onset-to-balloon time and door-toballoon time with mortality in patients undergoing angioplasty for acute myocardial infarction. JAMA 2000; 283: 2941–7. 4 Hamm CW, Bassand J-P, Agewall S, Bax J, Boersma E, Bueno H, Caso P, Dudek D, Gielen S, Huber K, Ohman M, Petrie MC, Sonntag F, Uva MS, Storey RF, Wijns W, Zahger D. ESC Guidelines for the management of acute coronary syndromes in patients presenting without persistent ST-segment elevation: The Task Force for the management of acute © 2015 Nordic College of Caring Science
5
6
7
8
9
7
was involved in its design, data analysis, drafting and revisions of the manuscript and supervision. Susanne Nielsen was involved in the design of the study, data analysis and contributed to the revisions of the manuscript. Sylvia M€a€att€a initiated the study and contributed to the data analysis, drafting and revisions of the manuscript. Kristin Falk was the supervisor of the study and responsible for critical revisions and supervision.
Ethical approval The study plan was approved by the Regional Ethics Board of Gothenburg (approval number: 352-11).
Funding We are grateful to the Centre for Equity in Health Care in V€astra G€ otalandsregionen, the foundation of Alice Swensson and the Foundation for Cardiology in Gothenburg, who have supported this study through grants. The authors have no conflicts of interest.
coronary syndromes (ACS) in patients presenting without persistent ST-segment elevation of the European Society of Cardiology (ESC). Eur Heart J 2011; 32: 2999– 3054. Goldberg RJ, Gurwitz JH, Gore JM. Duration of, and temporal trends (1994–1997) in, prehospital delay in patients with acute myocardial infarction: the second National Registry of Myocardial Infarction. Arch Intern Med 1999; 159: 2141–7. Moser DK, McKinley S, Dracup K, Chung ML. Gender differences in reasons patients delay in seeking treatment for acute myocardial infarction symptoms. Patient Educ Couns 2005; 56: 45–54. O’Donnell S, Condell S, Begley C, Fitzgerald T. Prehospital care pathway delays: gender and myocardial infarction. J Adv Nurs 2006; 53: 268– 76. Ottesen MM, Kober L, Jorgensen S, Torp-Pedersen C. Determinants of delay between symptoms and hospital admission in 5978 patients with acute myocardial infarction. Eur Heart J 1996; 17: 429–37. Heer T, Schiele R, Schneider S, Gitt AK, Wienbergen H, Gottwik M, Gieseler U, Voigtl€ander T, Hauptmann
10
11
12
13
KE, Wagner S, Senges J. Gender differences in acute myocardial infarction in the era of reperfusion (the MITRA registry). Am J Cardiol 2002; 89: 511–7. Saczynski JS, Yarzebski J, Lessard D, Spencer FA, Gurwitz JH, Gore JM, Goldberg RJ. Trends in prehospital delay in patients with acute myocardial infarction (from the Worcester Heart Attack Study). Am J Cardiol 2008; 102: 1589–94. Ting HH, Chen AY, Roe MT, Chan PS, Spertus JA, Nallamothu BK, Sullivan MD, DeLong ER, Bradley EH, Krumholz HM, Peterson ED. Delay from symptom onset to hospital presentation for patients with non-STsegment elevation myocardial infarction. Arch Intern Med 2010; 170: 1834. Goff DC Jr, Feldman HA, McGovern PG, Goldberg RJ, Simons-Morton DG, Cornell CE, Osganian SK, Cooper LS, Hedges JR. Prehospital delay in patients hospitalized with heart attack symptoms in the United States: the REACT trial. Am Heart J 1999; 138: 1046–57. Lovlien M, Schei B, Hole T. Prehospital delay, contributing aspects and responses to symptoms among Norwegian women and men with first
8
14
15
16
17
18
19
20
21
A. Gyberg et al. time acute myocardial infarction. Eur J Cardiovasc Nurs 2007; 6: 308–13. Rasmussen CH, Munck A, Kragstrup J, Haghfelt T. Patient delay from onset of chest pain suggesting acute coronary syndrome to hospital admission. Scand Cardiovasc J 2003; 37: 183–6. Kaul P, Armstrong PW, Sookram S, Leung BK, Brass N, Welsh RC. Temporal trends in patient and treatment delay among men and women presenting with ST-elevation myocardial infarction. Am Heart J 2011; 161: 91–97. Annual report SWEDEHEART 2012– 2013, http://www.ucr.uu.se/swedeheart/index.php/arsrapporter (last accessed 22 January 2015). Isaksson RM, Brulin C, Eliasson M, Naslund U, Zingmark K. Older women’s prehospital experiences of their first myocardial infarction. J Cardiovasc Nurs 2013; 28: 360–9. Davis LL, Mishel M, Moser DK, Esposito N, Lynn MR, Schwartz TA. Thoughts and behaviors of women with symptoms of acute coronary syndrome. Heart Lung 2013; 42: 428–35. Gallagher R, Marshall AP, Fisher MJ. Symptoms and treatment-seeking responses in women experiencing acute coronary syndrome for the first time. Heart Lung 2010; 39: 477–84. MacInnes JD. The illness perceptions of women following symptoms of acute myocardial infarction: a selfregulatory approach. Eur J Cardiovasc Nurs 2006; 5: 280–8. Ottesen MM, Dixen U, Torp-Pedersen C, Køber L. Prehospital behaviour of patients admitted with acute coronary syndrome or witnessed cardiac arrest. Scand Cardiovasc J 2003; 37: 141–8.
22 Sjostrom-Strand A, Fridlund B. Women’s descriptions of symptoms and delay reasons in seeking medical care at the time of a first myocardial infarction: a qualitative study. Int J Nurs Stud 2008; 45: 1003–10. 23 Johansson I, Swahn E, Stromberg A. Manageability, vulnerability and interaction: a qualitative analysis of acute myocardial infarction patients’ conceptions of the event. Eur J Cardiovasc Nurs 2007; 6: 184–91. 24 Turris SA, Finamore S. Reducing delay for women seeking treatment in the emergency department for symptoms of potential cardiac illness. J Emerg Nurs 2008; 34: 509–15. 25 Herning M, Hansen PR, Bygbjerg B, Lindhardt T. Women’s experiences and behaviour at onset of symptoms of ST segment elevation acute myocardial infarction. Eur J Cardiovasc Nurs 2011; 10: 241–7. 26 Galdas PM, Johnson JL, Percy ME, Ratner PA. Help seeking for cardiac symptoms: beyond the masculinefeminine binary. Soc Sci Med 2010; 71: 18–24. 27 Atzema CL, Austin PC, Huynh T, Hassan A, Chiu M, Wang JT, Tu JV. Effect of marriage on duration of chest pain associated with acute myocardial infarction before seeking care. CMAJ 2011; 183: 1482–91. cmaj.110170. 28 Brink E, Karlson BW, Hallberg LR. To be stricken with acute myocardial infarction: a grounded theory study of symptom perception and careseeking behaviour. J Health Psychol 2002; 7: 533–43. 29 Charmaz K. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. 2006, SAGE, London. 30 Morse JM. Developing Grounded Theory: The Second Generation. 2009, Walnut Creek: Left Coast Press.
31 McSweeney JC, Cody M, O’Sullivan P, Elberson K, Moser DK, Garvin BJ. Women’s early warning symptoms of acute myocardial infarction. Circulation 2003; 108: 2619–23. 32 Hwang SY, Zerwic JJ, Jeong MH. Impact of prodromal symptoms on prehospital delay in patients with first-time acute myocardial infarction in Korea. J Cardiovasc Nurs 2011; 26: 194–201. 33 Hajdarevic S, Schmitt-Egenolf M, Brulin C, Sundbom E, Hornsten A. Malignant melanoma: gender patterns in care seeking for suspect marks. J Clin Nurs 2011; 20: 2676–84. 34 Moloczij N, McPherson KM, Smith JF, Kayes NM. Help-seeking at the time of stroke: stroke survivors’ perspectives on their decisions. Health Soc Care Community 2008; 16: 501–10. 35 Hofgren C, Karlson BW, Herlitz J. Prodromal symptoms in subsets of patients hospitalized for suspected acute myocardial infarction. Heart Lung 1995; 24: 3–10. 36 Graham MM, Westerhout CM, Kaul P, Norris CM, Armstrong PW. Sex differences in patients seeking medical attention for prodromal symptoms before an acute coronary event. Am Heart J 2008; 156: 1210– 6.e1. 37 Jutel A, Nettleton S. Towards a sociology of diagnosis: reflections and opportunities. Soc Sci Med 2011; 73: 793–800. 38 Travelbee J. Interpersonal Aspects of Nursing. 1971, Davis, Philadelphia, Pennsylvania. 39 Werner A, Malterud K. It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors. Soc Sci Med 2003; 57: 1409–19.
© 2015 Nordic College of Caring Science
doi: 10.1111/scs.12286
Women’s help-seeking behaviour during a first acute myocardial infarction € rck RN, PhD (Senior Lecturer)1,2, Susanne Nielsen RN, MSc Anna Gyberg RN, MSc (PhD Student)1, Lena Bjo €a €tta € RN, PhD (Senior Lecturer)1 and Kristin Falk RN, PhD (Senior Lecturer)1 (Researcher)2, Sylvia Ma 1
Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden and 2Department of Molecular and Clinical Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
Scand J Caring Sci; 2015 Women’s help-seeking behaviour during a first acute myocardial infarction Studies indicate that the time from onset of symptoms to medical treatment has decreased in acute myocardial infarction (AMI). However, there are still variations indicating that women wait longer than men before making the decision to seek medical care. Multidimensional factors hindering and facilitating the decision have been identified in previous studies, though few have fully explored how social context affects women’s expectations, interpretations and actions and so influences the decision-making process. The aim of this study was therefore to identify how women’s experiences interacted and influenced the decision to seek medical care at their first AMI. Seventeen women, aged 38–75 years, were interviewed, at home or in the hospital, between June 2011 and May 2012. Grounded theory was used as a method, and data collection and analysis were carried out simultaneously. The results showed that before deciding to seek medical care, these women went
Background Incidence of coronary heart disease has decreased steeply during the last three decades, but it remains the most common cause of both morbidity and mortality in Sweden and elsewhere (1, 2). An important predictor for morbidity and mortality in patients with acute myocardial infarction (AMI) is time to treatment (3, 4). Patient delay has therefore become an important concept when studying time from onset of symptoms to contact with medical care and treatment. Earlier studies have shown that prehospital delay is associated with older age, diabetes, ethnicity, cultural background, educational level and other socio-economic factors (5–12). Correspondence to: Anna Gyberg, Sahlgrenska University Hospital, Diagnosv€ agen 11, Gothenburg 41685, Sweden. E-mail: [email protected] © 2015 Nordic College of Caring Science
through three defined but interrelated processes that together hindered their normal activities and made them act according to existential needs. The women’s experiences of the progression of the disease, in terms of both symptoms and time, were very different, so they sought medical care at different times, sometimes life-threateningly late and sometimes before developing an AMI. Three mechanisms had to coincide if the women were to receive medical care. First, the women had to acknowledge their symptoms as something more than common bodily changes. Second, the healthcare system had to be accessible when the women made their decision to seek care. Third, the women must have come into contact with healthcare providers when the heart muscle had taken enough damage to measure. Keywords: decision-making, gender, healthcare-seeking, grounded theory, women’s health, acute myocardial infarction. Submitted 22 January 2015, Accepted 4 August 2015
Results from previous studies show an inconsistency about whether gender has an impact on delay. Some studies have presented no differences between women and men (6, 13, 14) while others have reported that women wait longer than men before seeking medical care (5, 7–11, 15, 16). Previous studies on women’s decisions to seek medical care show that the process depends on how women interpret, explain and manage symptoms from an AMI (17–22). When women experienced symptoms as harmless, they believed that they were not at risk of AMI, which led to further delay (19, 20, 22). Moreover, as long as the women interpreted their symptoms as harmless, they tended to continue with their family responsibilities or other daily activities (17, 22–24). Moving from interpreting symptoms as harmless to seeing them as threatening is a common way to describe the decisionmaking process and has been explained by the intensity 1
2
A. Gyberg et al.
of the symptoms (17, 25). Even when the women realised that they needed medical care, they were still unwilling to disclose their experience to people around them (25, 26). Other reported factors that hinder women’s decision process include feelings of being a burden to others, especially if the symptoms turned out to be a false alarm (17, 25). Asking for help was found to relate to anxiety and fear caused by feelings of losing control (20, 22). Speaking about perception of illness to family and friends has been shown to lead to a faster decision to seek care (20). However, results indicate that it is more common within a relationship for women to encourage men to seek care than the reverse (27, 28). Previous research shows a complex decision-making process influenced by interpretations, beliefs and social interactions with others when women experience symptoms from an AMI. Earlier studies mainly explored which factors hinder or contribute to the decision to seek medical care. It is not fully understood how these hindering or contributing factors are related to social context, such as interactions and communications with the surrounding world, and how this influences the decision-making process. The aim of this study was therefore to identify how women’s experiences interacted and influenced the decision to seek medical care at their first AMI.
Methods Constructivist grounded theory (29) was used to study the meaning behind actions, with an abductive logic. This theory views data as problematic, because data are constructed through interactions between informants and researchers. This opens up questions about the viewers’ standpoint and also the circumstances of the informants. Interpretations of data were therefore tested iteratively in the field, to help understand different experiences. The viewer, for example, looks for tacit meanings behind actions to understand the consequences of sociallyconstructed discourse, and so learns how meaning is constructed (29, 30).
Sample and settings Eligible subjects were any women who had undergone an AMI for the first time, were between 18 and 75 years of age and could speak and understand Swedish. Members of the research team gave information about the study to patients in coronary units who met the inclusion criteria and asked them to participate. Seventeen women agreed to participate, and the first author contacted them, making an appointment to carry out an interview, within 3 weeks of admission to hospital. The women’s ages ranged from 38 to 75 years with a median age of 64. Eight were retired and nine were working part- or
full-time. Eleven were in a relationship and five had children living at home. Ten women were interviewed in their homes, six in hospital before discharge and one in hospital after discharge.
Data collection Women’s experiences of AMI were gathered by interviews carried out between June 2011 and May 2012. The tape-recorded interviews lasted between 25 and 140 minutes. All interviews opened with the question: ‘Tell me from the beginning about when you had the heart attack’. Further the meaning behind the decisionmaking process was explored by follow-up questions, depending on what the women brought up. Examples of these questions were as follows: ‘How did that make you feel?’, ‘What did you think when. . .?’ and ‘What did you do when. . .?’ The interviews lasted until the women and the researcher felt there was nothing more to tell.
Data analysis Data analysis evolved during data collection. Interpretations of data were converted into codes, categories and tentative concepts, periodically reviewing the codes as new perspectives developed through constant comparative reading. This formed the foundation for the construction of categories. Members of the research team explored similarities and differences between codes and categories and tested the emerging tentative concepts through theoretical sampling of new data, collected by subsequent interviews with more focused questions. By constant comparative reading, categories became more rigorous until saturation was reached, that is, no further insights were revealed. Quotes from different categories presented in these findings have been de-identified.
Ethical considerations The study plan was approved by the Regional Ethics Board of Gothenburg (approval number: 352-11). Written and verbal information was given to participants before the interviews, emphasising their right to withdraw at any time and without any further explanation. Additionally, before signing the consent, the participants were informed that if the interview provoked inconvenience or strong feelings, professional support could be given if needed. By signing the consent, the women were made aware that quotes could be published but not possible to relate to any individual.
Results The core of the women’s decision-making process was a change in their view of their ability to carry on as © 2015 Nordic College of Caring Science
Women’s help-seeking behaviour during a first AMI normal, from a retrospective to a prospective perspective. This change was a construction of actions, thoughts and emotions that the women experienced from symptom onset to the decision to seek medical care. The women characterised their symptoms as recurring, insidious and suddenly accelerating. Symptoms as the driving force are in this context divided into three levels, based on the women’s perception of them: nonintriguing symptoms, symptoms interfering with normal activities and symptoms intruding on life (Fig. 1). Seen together, they outline a process, where symptoms move from being perceived as harmless to being alarming. Each level contains three dimensions that are vertically dependent and horizontally follow the qualitative leaps towards the decision to seek medical care.
Nonintriguing symptoms Reinforcing harmless explanations. As long as they perceived their symptoms as harmless, the women made a variety of interpretations that were based on earlier experiences or assessments and other people’s reactions. During symptoms, earlier similar bodily experiences brought feelings of recognition, which reinforced simple explanations like stress or a sore muscle. Stress as an explanation could be supported by a sensation of having had a hard time lately, and a sore muscle was perceived as logical when thinking about recent exercise. They based other explanations on previous assessments made by healthcare professionals. Earlier diagnoses, such as osteoarthritis, gastritis and chronic obstructive lung disease, tended to create presuppositions of causes behind symptoms.
And everything sprung from my belief that I was sick with gastritis again. I very easily come down with gastritis when I’ve been stressed and worried and thought about things like that. It’s typical, nothing new to me. So everything had settled this summer and everything felt fine, and then this shows up, and I just expected it to be gastritis again. (W4) Friends’ and relatives’ reactions to the women’s symptoms also affected the reinforcement of simple harmless explanations. Relying on old habits. As long as they were able to find a harmless explanation, the women tended to rely on familiar remedies and their own capabilities to manage health problems. This was substantiated by earlier experiences of successful management of symptoms, and a perception of being someone who always had been able to manage situations. And since I was half asleep I wasn’t totally aware, but I know that you should breathe deeply, breathe out like this, in and out, and I kept on like that for a while and after, I don’t know, but it passed. So there was nothing more to it, I didn’t care. (W15) Harmless explanations did not necessarily lead to actions; they could also find confidence in the belief that situations tend to improve, which in turn led to wishful thinking and hope that symptoms would pass. Having recurring symptoms reinforced this behaviour. Performing normal activities. In spite of their symptoms, the women felt healthy. They did not associate having an appetite and sleeping well with being ill, which explains why they continued with their normal activities.
From a retrospective to a prospective perspective
Figure 1 The progression of the decision-making process based on the interconnected concepts. © 2015 Nordic College of Caring Science
3
Non-intriguing symptoms
Symptoms interfering with normal acƟviƟes
Symptoms intruding on life
Reinforcing harmless explanations
Recognising unfamiliar bodily changes
Coming to a point beyond recognition
Relying on old habits
Dealing with discomfort
Realising nothing helps
Performing normal activities
Struggling to keep one’s life in order
Being unable to perform normal activities
8
14
15
16
17
18
19
20
21
A. Gyberg et al. time acute myocardial infarction. Eur J Cardiovasc Nurs 2007; 6: 308–13. Rasmussen CH, Munck A, Kragstrup J, Haghfelt T. Patient delay from onset of chest pain suggesting acute coronary syndrome to hospital admission. Scand Cardiovasc J 2003; 37: 183–6. Kaul P, Armstrong PW, Sookram S, Leung BK, Brass N, Welsh RC. Temporal trends in patient and treatment delay among men and women presenting with ST-elevation myocardial infarction. Am Heart J 2011; 161: 91–97. Annual report SWEDEHEART 2012– 2013, http://www.ucr.uu.se/swedeheart/index.php/arsrapporter (last accessed 22 January 2015). Isaksson RM, Brulin C, Eliasson M, Naslund U, Zingmark K. Older women’s prehospital experiences of their first myocardial infarction. J Cardiovasc Nurs 2013; 28: 360–9. Davis LL, Mishel M, Moser DK, Esposito N, Lynn MR, Schwartz TA. Thoughts and behaviors of women with symptoms of acute coronary syndrome. Heart Lung 2013; 42: 428–35. Gallagher R, Marshall AP, Fisher MJ. Symptoms and treatment-seeking responses in women experiencing acute coronary syndrome for the first time. Heart Lung 2010; 39: 477–84. MacInnes JD. The illness perceptions of women following symptoms of acute myocardial infarction: a selfregulatory approach. Eur J Cardiovasc Nurs 2006; 5: 280–8. Ottesen MM, Dixen U, Torp-Pedersen C, Køber L. Prehospital behaviour of patients admitted with acute coronary syndrome or witnessed cardiac arrest. Scand Cardiovasc J 2003; 37: 141–8.
22 Sjostrom-Strand A, Fridlund B. Women’s descriptions of symptoms and delay reasons in seeking medical care at the time of a first myocardial infarction: a qualitative study. Int J Nurs Stud 2008; 45: 1003–10. 23 Johansson I, Swahn E, Stromberg A. Manageability, vulnerability and interaction: a qualitative analysis of acute myocardial infarction patients’ conceptions of the event. Eur J Cardiovasc Nurs 2007; 6: 184–91. 24 Turris SA, Finamore S. Reducing delay for women seeking treatment in the emergency department for symptoms of potential cardiac illness. J Emerg Nurs 2008; 34: 509–15. 25 Herning M, Hansen PR, Bygbjerg B, Lindhardt T. Women’s experiences and behaviour at onset of symptoms of ST segment elevation acute myocardial infarction. Eur J Cardiovasc Nurs 2011; 10: 241–7. 26 Galdas PM, Johnson JL, Percy ME, Ratner PA. Help seeking for cardiac symptoms: beyond the masculinefeminine binary. Soc Sci Med 2010; 71: 18–24. 27 Atzema CL, Austin PC, Huynh T, Hassan A, Chiu M, Wang JT, Tu JV. Effect of marriage on duration of chest pain associated with acute myocardial infarction before seeking care. CMAJ 2011; 183: 1482–91. cmaj.110170. 28 Brink E, Karlson BW, Hallberg LR. To be stricken with acute myocardial infarction: a grounded theory study of symptom perception and careseeking behaviour. J Health Psychol 2002; 7: 533–43. 29 Charmaz K. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. 2006, SAGE, London. 30 Morse JM. Developing Grounded Theory: The Second Generation. 2009, Walnut Creek: Left Coast Press.
31 McSweeney JC, Cody M, O’Sullivan P, Elberson K, Moser DK, Garvin BJ. Women’s early warning symptoms of acute myocardial infarction. Circulation 2003; 108: 2619–23. 32 Hwang SY, Zerwic JJ, Jeong MH. Impact of prodromal symptoms on prehospital delay in patients with first-time acute myocardial infarction in Korea. J Cardiovasc Nurs 2011; 26: 194–201. 33 Hajdarevic S, Schmitt-Egenolf M, Brulin C, Sundbom E, Hornsten A. Malignant melanoma: gender patterns in care seeking for suspect marks. J Clin Nurs 2011; 20: 2676–84. 34 Moloczij N, McPherson KM, Smith JF, Kayes NM. Help-seeking at the time of stroke: stroke survivors’ perspectives on their decisions. Health Soc Care Community 2008; 16: 501–10. 35 Hofgren C, Karlson BW, Herlitz J. Prodromal symptoms in subsets of patients hospitalized for suspected acute myocardial infarction. Heart Lung 1995; 24: 3–10. 36 Graham MM, Westerhout CM, Kaul P, Norris CM, Armstrong PW. Sex differences in patients seeking medical attention for prodromal symptoms before an acute coronary event. Am Heart J 2008; 156: 1210– 6.e1. 37 Jutel A, Nettleton S. Towards a sociology of diagnosis: reflections and opportunities. Soc Sci Med 2011; 73: 793–800. 38 Travelbee J. Interpersonal Aspects of Nursing. 1971, Davis, Philadelphia, Pennsylvania. 39 Werner A, Malterud K. It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors. Soc Sci Med 2003; 57: 1409–19.
© 2015 Nordic College of Caring Science
Women’s help-seeking behaviour during a first AMI you?” I say “It hurts so, something is wrong, because it can’t be like, nothing”. Then the bell of my daughter-in-law’s words rang. Her words rang inside my head, because I had told her yesterday about the painkillers I had taken and that they had worked. She said “then there is nothing dangerous, if it resolves. If it had been your heart it wouldn’t have mattered whatever you took.” (W1) With intense and persistent symptoms, the women had no choice other than to seek medical care. Being unable to perform normal activities. Being unable to perform daily activities was a result of losing control over the body. Even though the women were thinking about what they were going to do next, the body did not respond the way it was supposed to. I became afraid in terms of thoughts like now I can’t take myself to bed, and if I can’t get out of my bed, how will I survive then? (W17) At this point, the reluctance to go to the hospital usually disappeared, and if not, the women could be persuaded. They were often convinced to seek medical care when thinking, or being assured by others, that the step was not that great. Mentally minimising the gap between their normal activities and a visit to the hospital made the decision easier. But I am lucky. I have a manager who didn’t give up. She said “We can keep talking. We drive to the hospital and you can talk on the way there. Then they will take a blood sample and if it turns out it’s nothing we can go home or back to work.” Yes, I could agree to that. (W16) Many of the women also felt that life was not worth living with this unbearable struggle, which also helped them make the decision to seek help.
Discussion The women talked about their experiences as having started either the same day as they sought medical care, a month earlier or even a year earlier. Whether the symptoms throughout the whole process originated from the heart is difficult to know. However, the women retrospectively associated the symptoms with the AMI, which supports earlier results that prodromal symptoms, or preinfarction angina, are common more than a month before AMI (31, 32). Symptoms were experienced over different lengths of time and the character of the symptoms fluctuated over time in terms of intensity, duration and severity. This made it difficult for the women to know exactly when to seek medical care. Hindering and facilitating factors influencing the decision-making process identified in this study are congruent with earlier studies and include symptoms explained as harmless or related to previous discomforts or diagnosis (19, 22). To © 2015 Nordic College of Caring Science
5
interpret milder or elusive symptoms as a nonthreat is not specific to cardiac events, but also to other diseases such as stroke or cancer (33, 34). Like previous research, our results show that the decision to seek medical care is grounded in experiences, interpretations, perceptions and in the context of everyday life (17, 20, 22). Furthermore, earlier studies support our findings that even though symptoms intensified the women struggled to keep up with everyday activities due to responsibilities at home or at work (17, 18, 24). In the overall process, in the present study, the women could not have known when their perceived symptoms turned into an actual AMI. This consequently made them seek medical care at different times in relation to the disease progression, sometimes life-threateningly late and sometimes before developing an AMI. There are three mechanisms that unconditionally had to coincide for the women to receive appropriate medical treatment. First, the women had to acknowledge their symptoms as something significantly different from common bodily changes and because of that, overcome barriers to interrupt their everyday life. This was found to be most problematic in the second phase (symptoms interfering with daily life). In this phase, some women avoided seeking medical care, but others overcame barriers and did seek help. Second, the healthcare system had to be accessible and women had to understand how, where and when to seek medical care. Third, the women had to come in contact with the healthcare system at a time when there were objective signs of an AMI. The timing of these three mechanisms is crucial. Those who overcame barriers had different strategies to come in contact with the healthcare system. Some called for an ambulance, and some took the car to the emergency department. Others contacted primary care and had to wait hours or days before seeing a physician, with some collapsing while waiting. What determined which path they took depended on how they interpreted their symptoms and their understanding of the healthcare system. Of those who came in contact with a physician in the second phase, only some presented with objective signs of an AMI. An aggravating consequence among those who did not present objective signs was that they received prescriptions or advice that had nothing to do with AMI. This caused the barriers to grow when experiencing the same symptoms again. Their belief in their own ability to identify significant symptoms was also reduced. A fast decision to seek care will therefore not be much help if there are no objective signs to present. The women in this study could not have known when their perceived symptoms turned into an actual AMI, which indicates that there were hazardous discrepancies between the women’s perceived health condition and objective signs interpreted by healthcare professionals. To reduce this gap, symptoms must be viewed as important and valued
6
A. Gyberg et al.
higher during the diagnostic process (17). Prodromal symptoms are common in women (95%) (31). Hwang et al. (32) concluded that 40% of AMI patients visited a clinic owing to prodromal symptoms. Women also have more prodromal symptoms than men and are more likely to seek medical attention for them (35, 36). An improved dialogue about perceived symptoms may contribute to decreasing the discrepancies and healthcare professionals recognising that women with suspected prodromal symptoms may be at imminent risk of an AMI. Earlier contact with healthcare professionals without objective signs of an AMI reduced the women’s ability to identify symptoms as significant. In interaction and communication with healthcare professionals, the women’s experiences were subordinate to objective signs, which is consistent with Jutel and Nettleton’s findings (37). This draws attention to how symptoms and experiences are discussed during encounters with healthcare professionals since patient’s experiences and perception are central from a holistic point of view within caring science. Travelbee (38) states that interactions should be seen as means to identify each individual’s needs since this is a prerequisite of being able to plan and perform care. To not be aware of interactions and communication as means can lead to the consequences that care are being performed from interests of others instead of the patient’s (38). The women’s expectations that the symptoms had to be serious or important enough to be viewed as something real by healthcare professionals has been identified as a dimension emerging from normative, biomedical expectations (39). It is also reported that this can provoke feelings such as shame, indignity and disempowerment, which make individuals put major efforts into trying to work out how to behave so that they will be listened to before seeking medical care and during encounters with healthcare professionals (39). Delay cannot only be explained by individuals’ behaviour or rational decisions made from different choices in a complex context. This way of viewing the process will not lead to revolutionary changes in time to treatment. Illness cannot be separated from its social context, of which the healthcare system is a major part. Our findings indicate that there are unreasonably high expectations on women to know exactly when to seek medical care.
Strengths and limitations Data from interviews with 17 women gave a wide variety of experiences, which strengthens its trustworthiness. One potential limitation could be that the data were gathered retrospectively. However, all of the interviews were conducted within 3 weeks of hospitalisation, which should reduce recall bias. All of the interviews were performed by one person. The women were able to choose the location of the interview, and interviews took place
both at the hospital and in women’s homes. Regardless of where the interviews took place, the aim was to find a quiet and peaceful environment and to preserve the women’s integrity. To strengthen the credibility of the analysis process, all the authors were involved in a research triangulation. The wide spread of participants’ ages increases the likelihood of being able to generalise these findings to other women in the same situation. Only one of the participants was not born in Sweden, so the results may be less transferable to women with other ethnic backgrounds. To conclude, our findings are particularly important for what they show about the necessity for improved communication between women seeking care for nonsignificant AMI symptoms and healthcare professionals.
Conclusion Persisting and intensified symptoms were found to be the main force behind the decision-making process. The findings show that the women continued to prioritise daily activities as long as they did not acknowledge their symptoms as abnormal or threatening. Instead, they tried to alleviate the symptoms on their own. In other words, they did not seek medical care straight away since this implied an interruption of their daily life. Different experiences and situations came to steer when and how the decision to seek medical care was made. The women were unaware of the severity of the symptoms, something which prolonged the time between onset of symptoms and contact with the healthcare system. The women’s hesitation to seek medical care was strengthened by for example having had their symptoms labelled as vague or less serious in previous contacts with the healthcare system. They also worried that hospitalisation would lead to a loss of individual independence. Consequently, depending on how the women interpreted their symptoms and how they understood the healthcare system, the women sought medical care at different times. Sometimes this was life-threateningly late and sometimes it was before developing an AMI. The women were clearly unaware of the AMI’s progression, making the issue of time passing irrelevant. Viewing the timing of the three described mechanisms as a central part of delay means that it is impossible to expect the individual to know exactly when to seek medical care.
Clinical implications Making the healthcare system more comprehensible and accessible might decrease the perceived barriers to seeking care, though normative expectations among healthcare professionals and women also need to be made aware of. Since symptoms were found to be the driving force behind the decision-making process, the women’s © 2015 Nordic College of Caring Science
Women’s help-seeking behaviour during a first AMI narratives need to be viewed as significant during encounters in the healthcare system. The findings that objective signs tend to legitimise the significance of symptoms affect the decision-making process. One way for healthcare professionals to break this normative tendency is by acknowledging patient’s narratives and viewing their experienced symptoms as equally important as signs. To distinguish signs from symptoms, and to value them as equally important, might contribute to a faster decision-making process when symptoms reoccur, but also incorporate the feeling of being believed, and that the perceived symptoms are real, with or without signs. The findings in the present study indicate that there is an unreasonably high responsibility resting on the women to know exactly when to seek medical care.
Author contributions Anna Gyberg is the corresponding author. She was involved in the design of the study, carried out all interviews and drafted the majority of the interview reports and the manuscript. Lena Bj€ orck initiated the study and
References 1 Berg J, Bjorck L, Lappas G, O’Flaherty M, Capewell S, Rosengren A. Continuing decrease in coronary heart disease mortality in Sweden. BMC Cardiovasc Disord 2014; 14: 9. 2 Allender S, Scarborough P, Peto V, Rayner M, Leal J, Luengo-Fernandez R, Gray A. European cardiovascular disease statistics. European Heart Network 2008, http://www.ehnheart.org. (last accessed 22 January 2015). 3 Cannon CP, Gibson CM, Lambrew CT, Shoultz DA, Levy D, French WJ, Gore JM, Weaver WD, Rogers WJ, Tiefenbrunn AJ. Relationship of symptom-onset-to-balloon time and door-toballoon time with mortality in patients undergoing angioplasty for acute myocardial infarction. JAMA 2000; 283: 2941–7. 4 Hamm CW, Bassand J-P, Agewall S, Bax J, Boersma E, Bueno H, Caso P, Dudek D, Gielen S, Huber K, Ohman M, Petrie MC, Sonntag F, Uva MS, Storey RF, Wijns W, Zahger D. ESC Guidelines for the management of acute coronary syndromes in patients presenting without persistent ST-segment elevation: The Task Force for the management of acute © 2015 Nordic College of Caring Science
5
6
7
8
9
7
was involved in its design, data analysis, drafting and revisions of the manuscript and supervision. Susanne Nielsen was involved in the design of the study, data analysis and contributed to the revisions of the manuscript. Sylvia M€a€att€a initiated the study and contributed to the data analysis, drafting and revisions of the manuscript. Kristin Falk was the supervisor of the study and responsible for critical revisions and supervision.
Ethical approval The study plan was approved by the Regional Ethics Board of Gothenburg (approval number: 352-11).
Funding We are grateful to the Centre for Equity in Health Care in V€astra G€ otalandsregionen, the foundation of Alice Swensson and the Foundation for Cardiology in Gothenburg, who have supported this study through grants. The authors have no conflicts of interest.
coronary syndromes (ACS) in patients presenting without persistent ST-segment elevation of the European Society of Cardiology (ESC). Eur Heart J 2011; 32: 2999– 3054. Goldberg RJ, Gurwitz JH, Gore JM. Duration of, and temporal trends (1994–1997) in, prehospital delay in patients with acute myocardial infarction: the second National Registry of Myocardial Infarction. Arch Intern Med 1999; 159: 2141–7. Moser DK, McKinley S, Dracup K, Chung ML. Gender differences in reasons patients delay in seeking treatment for acute myocardial infarction symptoms. Patient Educ Couns 2005; 56: 45–54. O’Donnell S, Condell S, Begley C, Fitzgerald T. Prehospital care pathway delays: gender and myocardial infarction. J Adv Nurs 2006; 53: 268– 76. Ottesen MM, Kober L, Jorgensen S, Torp-Pedersen C. Determinants of delay between symptoms and hospital admission in 5978 patients with acute myocardial infarction. Eur Heart J 1996; 17: 429–37. Heer T, Schiele R, Schneider S, Gitt AK, Wienbergen H, Gottwik M, Gieseler U, Voigtl€ander T, Hauptmann
10
11
12
13
KE, Wagner S, Senges J. Gender differences in acute myocardial infarction in the era of reperfusion (the MITRA registry). Am J Cardiol 2002; 89: 511–7. Saczynski JS, Yarzebski J, Lessard D, Spencer FA, Gurwitz JH, Gore JM, Goldberg RJ. Trends in prehospital delay in patients with acute myocardial infarction (from the Worcester Heart Attack Study). Am J Cardiol 2008; 102: 1589–94. Ting HH, Chen AY, Roe MT, Chan PS, Spertus JA, Nallamothu BK, Sullivan MD, DeLong ER, Bradley EH, Krumholz HM, Peterson ED. Delay from symptom onset to hospital presentation for patients with non-STsegment elevation myocardial infarction. Arch Intern Med 2010; 170: 1834. Goff DC Jr, Feldman HA, McGovern PG, Goldberg RJ, Simons-Morton DG, Cornell CE, Osganian SK, Cooper LS, Hedges JR. Prehospital delay in patients hospitalized with heart attack symptoms in the United States: the REACT trial. Am Heart J 1999; 138: 1046–57. Lovlien M, Schei B, Hole T. Prehospital delay, contributing aspects and responses to symptoms among Norwegian women and men with first
8
14
15
16
17
18
19
20
21
A. Gyberg et al. time acute myocardial infarction. Eur J Cardiovasc Nurs 2007; 6: 308–13. Rasmussen CH, Munck A, Kragstrup J, Haghfelt T. Patient delay from onset of chest pain suggesting acute coronary syndrome to hospital admission. Scand Cardiovasc J 2003; 37: 183–6. Kaul P, Armstrong PW, Sookram S, Leung BK, Brass N, Welsh RC. Temporal trends in patient and treatment delay among men and women presenting with ST-elevation myocardial infarction. Am Heart J 2011; 161: 91–97. Annual report SWEDEHEART 2012– 2013, http://www.ucr.uu.se/swedeheart/index.php/arsrapporter (last accessed 22 January 2015). Isaksson RM, Brulin C, Eliasson M, Naslund U, Zingmark K. Older women’s prehospital experiences of their first myocardial infarction. J Cardiovasc Nurs 2013; 28: 360–9. Davis LL, Mishel M, Moser DK, Esposito N, Lynn MR, Schwartz TA. Thoughts and behaviors of women with symptoms of acute coronary syndrome. Heart Lung 2013; 42: 428–35. Gallagher R, Marshall AP, Fisher MJ. Symptoms and treatment-seeking responses in women experiencing acute coronary syndrome for the first time. Heart Lung 2010; 39: 477–84. MacInnes JD. The illness perceptions of women following symptoms of acute myocardial infarction: a selfregulatory approach. Eur J Cardiovasc Nurs 2006; 5: 280–8. Ottesen MM, Dixen U, Torp-Pedersen C, Køber L. Prehospital behaviour of patients admitted with acute coronary syndrome or witnessed cardiac arrest. Scand Cardiovasc J 2003; 37: 141–8.
22 Sjostrom-Strand A, Fridlund B. Women’s descriptions of symptoms and delay reasons in seeking medical care at the time of a first myocardial infarction: a qualitative study. Int J Nurs Stud 2008; 45: 1003–10. 23 Johansson I, Swahn E, Stromberg A. Manageability, vulnerability and interaction: a qualitative analysis of acute myocardial infarction patients’ conceptions of the event. Eur J Cardiovasc Nurs 2007; 6: 184–91. 24 Turris SA, Finamore S. Reducing delay for women seeking treatment in the emergency department for symptoms of potential cardiac illness. J Emerg Nurs 2008; 34: 509–15. 25 Herning M, Hansen PR, Bygbjerg B, Lindhardt T. Women’s experiences and behaviour at onset of symptoms of ST segment elevation acute myocardial infarction. Eur J Cardiovasc Nurs 2011; 10: 241–7. 26 Galdas PM, Johnson JL, Percy ME, Ratner PA. Help seeking for cardiac symptoms: beyond the masculinefeminine binary. Soc Sci Med 2010; 71: 18–24. 27 Atzema CL, Austin PC, Huynh T, Hassan A, Chiu M, Wang JT, Tu JV. Effect of marriage on duration of chest pain associated with acute myocardial infarction before seeking care. CMAJ 2011; 183: 1482–91. cmaj.110170. 28 Brink E, Karlson BW, Hallberg LR. To be stricken with acute myocardial infarction: a grounded theory study of symptom perception and careseeking behaviour. J Health Psychol 2002; 7: 533–43. 29 Charmaz K. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. 2006, SAGE, London. 30 Morse JM. Developing Grounded Theory: The Second Generation. 2009, Walnut Creek: Left Coast Press.
31 McSweeney JC, Cody M, O’Sullivan P, Elberson K, Moser DK, Garvin BJ. Women’s early warning symptoms of acute myocardial infarction. Circulation 2003; 108: 2619–23. 32 Hwang SY, Zerwic JJ, Jeong MH. Impact of prodromal symptoms on prehospital delay in patients with first-time acute myocardial infarction in Korea. J Cardiovasc Nurs 2011; 26: 194–201. 33 Hajdarevic S, Schmitt-Egenolf M, Brulin C, Sundbom E, Hornsten A. Malignant melanoma: gender patterns in care seeking for suspect marks. J Clin Nurs 2011; 20: 2676–84. 34 Moloczij N, McPherson KM, Smith JF, Kayes NM. Help-seeking at the time of stroke: stroke survivors’ perspectives on their decisions. Health Soc Care Community 2008; 16: 501–10. 35 Hofgren C, Karlson BW, Herlitz J. Prodromal symptoms in subsets of patients hospitalized for suspected acute myocardial infarction. Heart Lung 1995; 24: 3–10. 36 Graham MM, Westerhout CM, Kaul P, Norris CM, Armstrong PW. Sex differences in patients seeking medical attention for prodromal symptoms before an acute coronary event. Am Heart J 2008; 156: 1210– 6.e1. 37 Jutel A, Nettleton S. Towards a sociology of diagnosis: reflections and opportunities. Soc Sci Med 2011; 73: 793–800. 38 Travelbee J. Interpersonal Aspects of Nursing. 1971, Davis, Philadelphia, Pennsylvania. 39 Werner A, Malterud K. It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors. Soc Sci Med 2003; 57: 1409–19.
© 2015 Nordic College of Caring Science
