Exploring patients’ and relatives’ needs following acute myocardial infarction—A qualitative study

Coronary heart disease (CHD) is the leading cause of death worldwide (WHO 2020). Acute myocardial infarction (AMI) is the most common life-threatening manifestation of CHD (Reed et al. 2017). Among the revascularization therapies (e.g., aortocoronary bypass surgery) for AMI, primary percutaneous coronary intervention (PCI) is the most rapid and effective treatment. PCI reduces mortality rates (Smilowitz and Feit 2016), improves patient prognosis, and minimizes hospitalization time (Ibanez et al. 2018). Despite the rapidness and effectiveness of PCI, patients that undergo this treatment still retain the risk factors of CHD and they also enter the high-risk post-AMI group (Piepoli et al. 2016). Indeed, in the first year post-AMI, 18.3% of patients experience a second cardiovascular event (Jernberg et al. 2015). Therefore, as a complement to PCI, AMI patients should receive secondary prevention interventions, including biomedical risk management, pharmacotherapy, assessments regarding lifestyle and psychological risk factors, and support for initiating/maintaining lifestyle change (Piepoli et al. 2016). To prevent recurrent cardiac events in AMI patients, secondary prevention should be offered through cardiac rehabilitation programs and continuously accompanied by healthcare professionals, especially in the early post-AMI phase (Biga 2021).

In Austria, rehabilitation services for AMI patients are mainly provided through inpatient rehabilitation centers rather than outpatient centers. In an inpatient rehabilitation center, patients must stay an average of 3–4 weeks for completing the cardiac rehabilitation program (Mittag and Welti 2017). At the General Hospital of the City of Vienna, on average, post-AMI and PCI patients currently have an inpatient stay of 5.6 days (Qin et al. 2021); then, before discharge, these patients are asked whether they would like to participate in rehabilitation. Upon acceptance of rehabilitation, an application is made for patients. However, after discharge, patients have to wait to engage in inpatient rehabilitation for 29.7 days on average (Großschädl et al. 2014). The waiting time was extended even further during the coronavirus disease 2019 pandemic (Schlitt et al. 2021). Upon not wanting or not being able to wait for this duration, or even not wanting to engage in inpatient rehabilitation, patients most commonly do not engage in any rehabilitation, and this is due to varied reasons (e.g., patients may become afraid of losing their jobs owing to the length of stay; Sulzgruber et al. 2019). Hence, sometimes there is implementation of non-timely rehabilitation and at other times there is pure neglect of it, underpinning a gap in Austrian healthcare regarding nonpharmacological secondary prevention in the early period following discharge from hospital for this patient population.

According to Kotseva et al.’s (2019) study, most European patients do not adjust their health behaviors after suffering an AMI. Especially PCI-treated patients often underestimate the disease progression risk and lack knowledge about CHD and on the importance of health-improving behaviors (Peterson et al. 2014). Moreover, their motivation for lifestyle change depends on understanding disease severity, chronicity, and its consequences (Aazami et al. 2016). Concomitantly, patients and their families are often shocked by AMI and forced to learn to live with the disease’s unpredictability; this situation causes anxiety, which may evolve into efforts at making multiple lifestyle changes (Andersson et al. 2013; Fors et al. 2014; Merritt et al. 2017; Smith et al. 2017).

Although nursing interventions have been recommended by the European guidelines on cardiovascular disease prevention (Piepoli et al. 2016) and described by the American Association of Cardiovascular and Pulmonary Rehabilitation guidelines (Dolansky and Mola 2021), it remains difficult to determine whether these recommendations would be appropriate in Austria because the effects of nursing interventions depend on the context of its implementation (Craig et al. 2018). It thus seems necessary to develop an evidence-based nursing intervention for AMI patients that is tailored to the Austrian context. This may assist in establishing a robust support system that improves adherence to secondary prevention measures and promotes health. To this end, it is crucial to understand AMI patients’ and their relatives’ perspectives and needs in such settings (Rushton et al. 2017).

To better understand people experiencing an illness, Svenaeus (2011), while following Heidegger’s ontology, describes health as “homelike being-in-the-world” and illness as “unhomelike being-in-the-world.” In the opinion of this cited author, Heidegger’s ontology offers the conceptuality that describes human experience related to the lived body, attunement, temporality, and being-toward-death. Therefore, he suggests that healthcare professionals should approach the human experience through Heidegger’s ontology in order to have a better understanding of the patients’ experiences. Heidegger’s magnum opus, Being and Time (1962), describes his ontological focus on the central phenomenon of “being-in-the-world,” which in turn forms the fundamental structure of Dasein (human Being). He said, “Understanding of Being is itself a definite characteristic Dasein’s Being.” (Heidegger 1962, p. 12) And “Dasein is its disclosedness” (Heidegger 1962, p. 133). To designate disclosedness, Heidegger describes three inseparable existential constitutions: state of mind, understanding, and discourse; the state of mind and understanding are articulated through discourse. These are the constitutive ways by which Dasein is disclosed, emphasizing that human beings endeavor to plan a new future life to make the alienation (“unhomelikeness”) familiar to oneself (Heidegger 1962).

With this theory in mind, we can see that AMI can trigger an existential crisis in patients’ and their relatives’ lives and confound their self-evidence in life. Therefore, patients feel like they are in an unhomelike being-in-the-world, leading them to plan a new future life that makes the alienation familiar to them. Moreover, relatives can contribute to CHD patients’ psychological well-being (Hansen et al. 2017), although they are also affected by AMI and incur psychological burdens related to it (Andersson et al. 2013; Gullick et al. 2017).

This study investigated AMI patients’ and their relatives’ experiences from the onset of AMI symptoms until the early period following discharge. In this study, “relatives” refers to patients’ spouses, partners, parents, and children. We aimed to demonstrate the needs of post-AMI patients and their relatives and expect this study to contribute to the development of nursing interventions that address their needs. The research questions were

We identified four central phenomena: “Understanding of living with heart disease,” “Omnipresent anxiety,” “Being there for each other,” and “Being understood as an individual.” The first phenomenon, “Understanding of living with heart disease,” described the process participants underwent to understand CHD and includes three intertwined sub-phenomena: “Perceiving having heart disease,” “Getting familiar with heart disease,” and “Living life against the backdrop of heart disease.” The phenomena shown in Fig. 1 were interdependent and constantly influenced each other. They showed the constitutive ways of the openness with which AMI patients and their relatives make the unhomelike life in the AMI situation familiar to themselves and highlighted their needs while becoming aware of CHD and their coping strategies.

The theme “Understanding of living with heart disease” refers to participants’ reports on their ambivalent experiences. Specifically, it refers to the participants’ lack of illness perception and endeavors to understand their CHD since the onset of their first AMI; it also describes their needs to be able to understand the disease causes at the individual level and to shape up their future. Mentrup and Schnepp (2014) reported that the limited receptivity due to the shock experienced from AMI and the sedative and analgesic therapies administered as emergency treatment could lead to a lack of illness perception among patients. Moreover, patients often experience a certain delay in becoming aware of CHD chronicity due to the lack of physical discomfort and limitations after PCI (Mentrup and Schnepp 2014). Regarding the need to understand own disease, other researchers show that patients try to prepare to sustain their future health by becoming aware of their illness during the acute phase in the hospital (Barnason et al. 2012; Fors et al. 2014). Andersson et al. (2013) further underlined that relatives often feel ignored by medical staff, receiving little information about the disease and future disease-prevention measures. The aforementioned conforms to the theme “Understanding of living with heart disease”. According to Heidegger’s ontology, the existential constitution “understanding” is a process of interpretation; first, for one to design a future life, one forms a relationship with an experienced event, looking for answers on its wherefores while endeavoring to connect the experience with one’s previous understanding (Heidegger 1962). In our evidence, owing to the lack of involvement of the inpatients in the treatment processes and the accelerated rate of these processes, patients seemingly lacked opportunities to clearly grasp their CHD.

“Omnipresent anxiety” refers to anxiety that came in both manifest and latent forms during the disease trajectory, affecting the lives of both patients and their relatives after the AMI event. Some patients reported being motivated to change their unhealthy lifestyles owing to anxiety—others tried to deny their anxiety. The anxiety of losing their own identity and their social roles made them feel lonely; their relatives concomitantly reported having been affected by the AMI at the same proportion as the patients, as well as bearing severe stress. This evidence concurs with past qualitative literature. Early after discharge, it is common for patients to show concerns (e.g., feelings of isolation, fear, etc.; Smith et al. 2017), while relatives feel highly uncertain and have to deal with emotional stress (Andersson et al. 2013; Gullick et al. 2017; Pedersen et al. 2021). According to Heidegger’s ontology, “anxiety” is seen as an opportunity to redesign one’s own life. However, “in anxiety, one feels ‘uncanny’” (Heidegger 1962, p. 188). Additionally, Heidegger said that the state of mind serves as an access to the world, enabling people to focus on what is happening to understand the interrelationships that unfold; the state of mind concomitantly serves to indicate concern, which is the prerequisite for forming an understanding about something (Heidegger 1962).

In our study, anxiety seemingly played a significant role in individual coping with CHD—based on Heidegger’s ontology, it is a prerequisite for understanding and serves as a motivation to deal with a disease. Nonetheless, those concerned about the disease may also close themselves off out of fear, not accepting help thereafter. Moreover, our evidence underpins that the combination of a medical confirmation regarding a successful PCI and a lack of explanations about the treatment process is not likely to lead to anxiety reduction among AMI patients and their relatives. Instead, patients and their relatives may be left with the impression that dealing with CHD is unwarranted. Accordingly, healthcare professionals should talk to patients and their relatives about this anxiety, provide relevant responses to their needs, and offer need-based information by acknowledging the patient’s situation. Exemplifying: suppose a male patient has a fear of recurrent heart attacks; the healthcare staff can explain how he should respond to a future emergency and give him an emergency card containing clear instructions on how to deal with such a situation. This patient empowerment may enable patients to devise strategies to cope with symptomatic recurrence.

“Being there for each other” refers to the relatives’ reports on their provision of physical and psychological support to their sick relatives and to the latter’s lifestyle change endeavors. Owing to such support provision, relatives reportedly wanted information about the disease and potential coping strategies. They also described being more worried about and sometimes even controlling their sick relatives. On this topic, Heidegger described:

Thus as Being-with, Dasein ‘is’ essentially for the sake of Others […] in Being with and towards Others, there is thus a relationship of Being from Dasein to Dasein. But it might be said that this relationship is already constitutive for one’s own Dasein […] (Heidegger 1962, pp. 123–124)

Hence, based on Heidegger’s ontology, healthcare professionals should endeavor to understand the relatives’ situations, concurrently considering patients and their relatives as persons affected by the disease. Two studies which examined the experience of being the relative of someone who has suffered an AMI validate this view based on Heidegger’s ontology (Andersson et al. 2013; Pedersen et al. 2021). Indeed, relatives need to change their future life to meet the situation of their sick relative (Andersson et al. 2013). Accordingly, the relatives’ dual roles (i.e., as supporters of the sick relative and as people who need support) should be addressed, and support should be made available to them (Gullick et al. 2017; Pedersen et al. 2021).

“Being understood as an individual” refers to participants’ yearning for healthcare professionals to respond to their individual needs during communication. Specifically, they would have liked to have the opportunity to talk with healthcare professionals during hospitalization and receive individualized information. However, professionals’ information provision most often did not meet patients’ personal needs. Moreover, participants reported non-adherence to medication, rejection of warranted therapy, and post-AMI life uncertainty. Fors et al. (2014) reported that patients have concerns and uncertainty before knowing the cause of their symptoms. That is why healthcare professionals should provide early dialogical interventions. On the topic, Heidegger remarked: “The intelligibility of Being-in-the-world—an intelligibility which goes with a state-of-mind—expresses itself as Discourse” (Heidegger 1962, p. 161). Further, discourse has both a communicative function (i.e., conveying information) and a participatory function (i.e., one’s hearing and understanding what was heard; Posselt and Flatscher 2018).

Additionally, participants in our study asked questions about disease causes at the individual level because they were looking for an explanation for it in both their past and present lives. Concurrently, they wanted to avoid the disease and were worried about their future. Heidegger’s ontology can justify this information-seeking behavior regarding disease cause by explaining that we develop an understanding of what we are experiencing through our immediate life experiences. The extent to which our understanding of situations, actions, and persons is shaped by tradition presupposes the degree of familiarity with oneself or others (Demmerling 2015; Heidegger 1962). On the topic, Heidegger emphasized: “understanding is the being of such potentiality-for-Being” (Heidegger 1962, p. 144).

The strengths of this research reside in the application of the phenomenological hermeneutical method and critical reflection during data analysis, through which researchers’ previous knowledge was continuously applied. Another strength is related to our interpretation of the findings based on Heidegger’s ontology, which we believe led to a more in-depth understanding of the evidence and to identifying the core of the four identified phenomena. The inclusion of relatives in the sample is another strength of this study, as it helped us gain a broad awareness of patients’ post-AMI life.

Nevertheless, all interviewed study participants were recruited from a single hospital, in good clinical condition, and read and spoke in German. This denotes that our evidence is limited in its generalizability. Therefore, we suggest for future research to examine the perspective of patients and their relatives amid acute crisis and with various cultural and nationality backgrounds. Further, our findings were not validated by the patients and their relatives; hence, we observe a limitation regarding the trustworthiness of the findings. To reduce this limitation, we may conduct future research in which we perform longitudinal interviews with the same post-AMI participants within 1 year after the AMI event. Still, by promoting detailed descriptions of the research methods as well as by discussing the qualitative findings within the group of authors, we sought to reach credibility. We also see a research field for researchers from other nationalities and/or who speak other languages to interview participants who do not read and speak German.

Our results demonstrate that the participants had strong needs to get information on disease causes at the individual level and to reshape their lives after the event—so as to ensure a normal life. Hence, nurses or other healthcare professionals should take their time when communicating with patients and their relatives during acute phases, as this may allow for these two latter parties to gradually grasp the disease causes and possible secondary prevention measures. Such communication may also improve their awareness of the disease. Specifically, such efforts can reveal patients’ and their relatives’ resources for coping with the disease, help them feel involved in the treatment, and allow for them to reach a consensus with healthcare professionals about further treatment. Thereafter, they may be able to better cope with the psychological stress and anxiety associated with AMI, as well as to more holistically understand CHD. In the end, these measures may allow for the reshaping of their future lives.

Since we analyzed the initial experiences of AMI patients and their relatives in depth, this research contributes to evidence-based knowledge in nursing practice and research. Future education programs related to the topic should aim at both patients and their relatives and focus on helping all those affected to lead their lives against the background of CHD.

Our findings suggest that healthcare professionals should start involving patients and their relatives in the care processes from the first medical contact, responding to their needs, offering individual health information, and providing continuous support in the early period following discharge. Such endeavors may allow those affected to understand CHD and prepare for and adapt to the needed lifestyle changes.

Our report on the needs of patients and their relatives makes an important contribution to person-centered nursing care. Specifically, we see the need for nonpharmacological secondary nursing interventions applied in the post-AMI period to follow the person-centered approach and consider the four central phenomena mentioned above; this methodology may improve the quality of care by ensuring that those affected are accompanied in their lives after this harsh event.