Keywords

1 Introduction

Health literacy empowers, drives equity, and has been positioned as a prerequisite for Sustainability Development Goal (SDG) 3: Good health and well-being. It is based on inclusive and equitable access to quality education and life-long learning (WHO 2017). Health literacy is an interdisciplinary and multidimensional concept involving individuals and organisations (Sørensen et al. 2012; WHO 2013; WHO 2017; Orkan 2019; Liu et al. 2020). Individual health literacy means the degree to which any individual/person can find, understand, and use information and health services to inform decisions and actions related to their health. Organisational health literacy is the degree to which organisations enable people to find, understand, and use information and healthcare services in decisions about their health and subsequent actions (Centers for Disease Control and Prevention (CDC) 2020). This understanding of health literacy involves a division of responsibility. Individuals are not solely responsible for strengthening their health literacy: healthcare organisations are expected to provide clear, accurate, appropriate, and accessible information (WHO 2017).

Several surveys have been developed to measure health literacy resulting in an amount of incomparable data measuring different variables, making it difficult to conduct valid systematic meta-analyses (Ghisi et al. 2018; Pleasant et al. 2019). The European Health Literacy Population Survey 2019–2021 (HLS19) of M-POHL has been developed to measure populations’ health literacy in European countries (Pelikan et al. 2019). The first survey in Norway of the population’s health literacy was carried out in 2018–2021 (The Norwegian Directorate of Health 2020). The survey showed that 33% of the population has low health literacy and may lack the key knowledge and skills necessary for self-care, avoiding risk factors or coping with disease treatment. No clear differences in health literacy between genders, age groups, level of education, or persons with and without long-term illness, were found (The Norwegian Directorate of Health 2020).

Myocardial infarction (MI) is a life-threatening condition that requires urgent medical and invasive treatment (Byrne et al. 2023). Patients with MI mostly have an underlying atherothrombotic process, which is a chronic condition caused by a combination of genetic, physiological, environmental, and behavioural factors (Grovatsmark et al. 2020; WHO 2022; Byrne et al. 2023), and which can manifest itself through different acute and chronic diseases. Long-term treatment and lifestyle changes are required to control risk factors and reduce the risk of recurrent MI (Kotseva et al. 2016, 2019).

Acute MI is part of the acute coronary syndromes (ACS) spectrum. ACS are associated with a wide range of clinical presentations: from patients who are symptom free at presentation to prolonged chest discomfort/pain or cardiogenic shock or cardiac arrest. Patients presenting with suspected ACS are typically classified based on ECG results and the presence or absence of cardiac troponin elevation. Patients presenting with ST-elevation on their ECG are classified as having an ST-elevation myocardial infarction (STEMI), and patients without this ECG marker, who fulfil the MI criteria, as non-ST-elevation myocardial infarction (NSTEMI). The MI pathway differs for patients with STEMI and NSTEMI. Clinical guidelines and medical recommendations for the acute treatment of STEMI are important frame factors in the acute phase. The first choice of treatment is invasive, with percutaneous coronary intervention (PCI) within the first 120 minutes of medical contact (Byrne et al. 2023). Patients are treated with fibrinolysis followed by PCI when geographic distances prevent primary PCI within 120 minutes (Grovatsmark et al. 2020; Byrne et al. 2023). Invasive treatment is centralised in Norway; thus, ca. 50% of the patients are transferred between hospitals to receive treatment (Grovatsmark et al. 2020). In patients with NSTEMI, immediate or urgent PCI is recommended for high-risk patients within 24 hours, and delayed PCI is an option for patients not considered to be high risk (Byrne et al. 2023).

The treatment and care of MI (the MI pathway) can be divided into different phases, yet the phases often overlap (Bårdsgjerde 2022). In this research project, the MI pathway was divided into three phases: acute, hospitalisation and discharge, and rehabilitation. The acute phase starts at the point of first medical contact and ends with PCI treatment. The acute phase is followed by the hospitalisation and discharge phase; the final phase is rehabilitation. The rehabilitation phase consists of lifelong treatment supporting healthy lifestyle choices, optimising medications, and achieving and sustaining risk factor treatment targets (Byrne et al. 2023).

The treatment of MI should consider not only the best available evidence regarding clinical management but also the individual patient’s preferences, needs, and values in clinical decision-making (Byrne et al. 2023). A person-centred approach improves patients’ experiences of information, communication, and the involvement of family caregivers (Wolf et al. 2019) and might improve patient outcomes (Fors et al. 2017; Pirhonen et al. 2019). Involving and educating the patient are recognised as a key component in cardiac care and should take place throughout the MI pathway, from admission to hospital discharge and further into the rehabilitation phase (Byrne et al. 2023).

Patients with MI need sufficient health literacy enabling them to make multiple lifestyle changes and adhere to recommended medical treatment (WHO 2013). Studies have revealed that patients often experience insufficient information about their disease, lifestyle changes, and medications during the MI pathway (Decker et al. 2007; Pettersen et al. 2018; Bårdsgjerde et al. 2019; Valaker et al. 2020). Patients’ abilities to process, understand, and use health information might be reduced in acute situations (Astin et al. 2008; Svavarsdóttir et al. 2015).

A German study showed that over 40% of patients with cardiovascular disease reported difficulties in accessing, understanding, appraising, or applying health information in their daily life. In addition, the study identified that the largest differences between persons with and without cardiovascular disease were to understand health warnings about behaviours such as smoking, low physical activity, and use of alcohol and to judge which everyday behaviours is related to their health (Diederichs et al. 2018). A Norwegian-Danish study found that lower health literacy is associated with more behavioural and psychological risk factors in patients with cardiovascular disease (Brørs et al. 2022).

A systematic review suggested that the prevalence of low health literacy among these patients is, on average, 30%. It was identified that low health literacy led to increased re-admissions, lower quality of life related to health, increased anxiety levels, and a decrease in social support. Just one of the studies included in the systematic review investigated health literacy and its impact on cardiac rehabilitation (Ghisi et al. 2018).

Studies have shown that cardiac rehabilitation programmes reduce hospitalisation for cardio events, recurrent MI, and mortality caused by cardiovascular disease (de Araújo Pio et al. 2017; van Halewijn et al. 2017; Rea et al. 2020; Salzwedel et al. 2020; Dibben et al. 2021). In addition, meta-analyses have shown that patient education through cardiac rehabilitation leads to improved self-management behaviours (Aldcroft et al. 2011), increased health-related quality of life, and could potentially reduce healthcare costs (Brown et al. 2013; Dibben et al. 2021). This is supported by a systematic review demonstrating that educating patients increases patients’ knowledge and behavioural changes regarding physical activity, diet, and smoking cessation (Ghisi 2014). An international concern is that the participation rate in cardiac rehabilitation programmes is low (Kotseva et al. 2016; Olsen et al. 2018; Norekvål et al. 2023).

The aim of this study was to explore nurses’ and physicians’ experiences in building health literacy in the MI pathway. The research question was:

  • How do nurses and physicians experience building health literacy in the myocardial infarction pathway?

2 Methods

2.1 Design

The study employs qualitative design using a thematic analysis method (Braun and Clarke 2006). A qualitative approach provides insight into health professionals’ perceptions and experiences with the phenomenon of health literacy. Thematic analysis is a tool used to identify, analyse, and report patterns within the data. This tool is flexible in providing rich, detailed, yet complex, data (Braun and Clarke 2006).

2.2 Participants

The study was approved by hospital management at two hospitals in Mid-Norway. Contacts at the hospitals helped to recruit participants.

Participants were selected by purposive sampling (Polit and Beck 2020). To ensure variation in the sample, contacts were requested to invite male and female nurses and physicians of different ages, educational backgrounds, and experiences (Patton 2015). The following inclusion criteria were applied: (a) nurses and physicians who worked in cardiac care and (b) with a minimum of 1 year of experience within cardiac care.

Twenty-two nurses participated in focus groups and nine physicians were individually interviewed. Demographic data are presented in Table 7.1.

Table 7.1 Demographic data
Full size table

2.3 Data Collection

Interview guides with open-ended questions were developed based on both the research question and previous research. The interview questions were related to providing information, for example, what information was provided during the different phases of the MI pathway, by whom, and in which way. Other questions were related to patient engagement and involvement, and how and when they were involved in their treatment and care. Follow-up questions were asked as appropriate.

Five focus groups with nurses and nine individual interviews with physicians were carried out from February to November 2018. The focus groups lasted approximately 90 minutes. The size of the focus groups varied from three to five participants. The individual interviews lasted between 27 and 58 minutes, with a mean duration of 43 minutes. The interviews were carried out by the first author; the third author co-moderated the focus groups. The interviews were audio-recorded and transcribed verbatim. Data saturation was achieved when we considered that the collected data were rich, and we could identify redundancies and patterns (Krueger and Casey 2015; Polit and Beck 2020).

2.4 Ethical Considerations

The Norwegian Centre for Research Data approved the study (Project number 56617). Written informed consent was obtained before data collection. Participants were informed that they could withdraw from the study without giving a reason. To avoid participant identification, demographic data and quotes applied in the results section cannot be linked to individual participants.

2.5 Trustworthiness and Rigour

The study was conducted in accordance to the Consolidated Criteria for Reporting Qualitative Research Guidelines (COREQ) (Tong et al. 2007). To ensure credibility, the methods and choices made are described in an explicit and transparent manner, and quotations were chosen to substantiate the results. At the end of each focus group, the co-moderator summarised the content, providing the participants with opportunities to add supplementary comments, to increase credibility. The analysis was performed by the first author. To achieve confirmability in the analysis, the co-authors read the transcripts, and the results were discussed. The results are presented through detailed descriptions enabling the readers to assess transferability (Lincoln and Guba 1985; Polit and Beck 2020).

3 Data Analysis

The data analysis was directed by both the research question and theoretical perspectives and earlier research on health literacy (Sørensen et al. 2012; Centers for Disease Control and Prevention (CDC) 2020).

In the data analysis, we followed the six phases described by Braun and Clarke (2006). In phase one, the interviews were read and re-read searching for meanings and patterns across them. In phase two, coding began. The data set was divided into three phases of the MI pathway: acute, hospitalisation and discharge, and rehabilitation. Initial codes were developed based on the different phases of the pathway. Extracts from the data set were chosen and labelled in the initial codes. When all data were collated into initial codes, the codes were analysed. We then considered how different codes could be combined to form overarching themes for each phase of the pathway. In the fourth phase, we reviewed the themes, and in phase five and six, the themes were defined, named, and written out in full. Quotations were used to underpin the results. Three themes were developed related to the different phases of the MI pathway.

The first author conducted the data analysis. The data analysis process and the development of sub-themes and themes were discussed by all authors. The data analysis was not a linear process but performed by a constant movement back and forth between the data set and the coded data extracts.

4 Results

The results showed how 22 nurses and 9 physicians experienced building health literacy in different phases of the MI pathway. The results are presented through three themes related to the acute phase, the hospitalisation and discharge, and the rehabilitation phase.

4.1 Precise and Clear Information: Acute Phase

Nurses and physicians expressed that for patients diagnosed with ST-elevation myocardial infarction (STEMI), it was necessary to convey concise and precise information to the patient about the diagnosis and what would happen: “(By) then it is usually very urgent, so there is no time for a conversation, but we try to give concise information before we take them into the Angio Lab” (Physician 1). They emphasised that it was important to reassure patients when carrying out life-saving treatment. During the acute phase, the nurses and physicians experienced that the patient often did not have the prerequisite knowledge to understand the overall picture of the disease: “The patients know little about the disease and treatment. So, we cannot expect them to understand what is happening” (Focus group 3, Nurse 1). Some of the participants worked at the Angio Lab and they said that they often had “a here and now focus” during treatment. A nurse stated: “We tell them some basics while we’re at it, we do what we have to do and provide information to the patient at the same time” (Focus group 2, Nurse 2).

During the acute phase, the nurses and physicians reported that saving lives and carrying out the treatment was a priority rather than building health literacy. Experienced nurses conveyed that the acute phase could present teachable moments, where the patient wanted to learn about the disease: “I think it is limited how therapeutic the information in the Angio Lab is, but the potential is there to guide them further” (Focus group 2, Nurse 1).

The health professionals said that the transfer of patients between hospitals for PCI was often poorly planned for. For example, patients could be lacking personal belongings, such as clothes for the journey home, money, personal identification, and a mobile phone. This could cause problems for the patient upon discharge and their return home. It seems as if at an organisational level, health literacy was deficient in planning the patient pathway. There was a systemic lack of planning for the practical aspects of travel to, and from, PCI hospitals.

4.2 Starting to Build Health Literacy: Hospitalisation and Discharge

Nurses and physicians stated that patients with non-ST-elevation myocardial infarction (nSTEMI) received more information before the angiography and treatment. These patients were prepared with systematic information from physicians and nurses, both in oral and written form. Nurses and physicians emphasised that this information often had to be repeated, as it seemed to be difficult for patients to understand the complexity of the treatment intervention.

Patients were offered group education about the disease and control of risk factors. The nurses said that they emphasised which risk factors the patients themselves could influence, such as medication adherence, smoking cessation, physical activity, and diet. Health professionals experienced that patients were receptive to information and that an MI often presents teachable moments where patients were motivated to engage in building health literacy. Health professionals were aware that the pathway was short, which often led to challenges in the continuity of patient education. They conveyed that there was a need to systematise patient information in patient records. Information about whether the patient had understood the provided information was not documented: “The documentation system we have is too poor, we do not know what information the patient has received” (Physicians 1).

Nurses and physicians described that the MI pathway was fragmented, which resulted in little continuity in follow-up by health professionals. This meant that the patient often met different and new health professionals. Nurses and physicians said that they asked open-ended questions or asked the patient to “re-tell”, or repeat back, information that they had received, so they could capture what the patient had received and understood from the provided information. Nurses also reported that there was a lack of written information. Paper-based brochures were replaced by digital information which was unavailable to some patients. These shortcomings might be interpreted as challenges for achieving organisational health literacy.

The health professionals said that before being discharged, the patients had a thorough conversation with the physician. Both oral and written information were provided. A physician conveyed it as follows: “I emphasise the discharge conversations, because we address the central points there. To sort of summarize the whole hospital stay, provide good reasons for why you have started taking medication and the complete medication list, and how the patient should proceed. Patients with MI have very short hospital stays, and prior to discharge they need some time” (Physician 6). The health professionals considered their patients’ discharge as a good opportunity for building health literacy, and for empowering the patient to make good choices related to medications and lifestyle changes.

Both nurses and physicians expressed that it was difficult to communicate with patients who were not motivated to undertake cardiac rehabilitation, medication adherence, or lifestyle changes. Health professionals experienced a lack of resources and time to meet the extensive needs for motivation related to lifestyle changes and adherence to treatment in these patients. Nurses and physicians conveyed that they sometimes tried to involve family caregivers to motivate patients to, for example, participate in cardiac rehabilitation. It was a balance between motivating and persuading the patients: “Sometimes we trick them into (undertaking) cardiac rehabilitation, but I think that is the best we can do for them” (Focus group 3, Nurse 4).

4.3 Health-Literate Patients: Rehabilitation Phase

Nurses and physicians communicated that they considered it important that all patients participated in a cardiac rehabilitation programme. The overall aim of cardiac rehabilitation is to reduce the risk of recurrences and progression of heart disease.

Nurses and physicians also said that different approaches to learning were used. The cardiac rehabilitation programme consists of teaching individually and in groups, where family caregivers could participate. Group lectures were held by physicians, nurses, physiotherapists, and nutritionists and consisted of providing information about the disease, prevention of disease development, medication, and lifestyle preventive measures such as stopping smoking, dietary changes, and physical activity.

Nurses and physicians further emphasised that group training was an important part of the educational programme in cardiac rehabilitation. Training was important for them in order to master being physically active. Nurses and physicians expressed that it was important for patients to learn that physical activity was safe and important in relation to preventing negative disease development. Health professionals experienced that the community of practice with other patients motivated and improved patients’ own health literacy. By participating in the community of practice, they gained motivation, knowledge, and the will to make good lifestyle choices for their own health.

Individual counselling was provided by both nurses and physicians. This counselling consisted of adjusting medication according to symptoms and adapting lifestyle changes to the individual patient’s risk factors: “We apply a form for risk factors, and then we point out what they can do to reduce risk factors. Some have several risk factors, while others have fewer” (Focus group 4, Nurse 1). Nurses and physicians emphasised that they could not force patients to make lifestyle changes, but that they tried to motivate them by providing information about why they should, for example, stop smoking.

Nurses and physicians said that empowering patients was vital in building health literacy. They conveyed that it was crucial that the patients accepted their own responsibility for making good choices related to their health and well-being: “The responsibility lies not only with the healthcare system, but everyone is largely responsible for their own health and acts themselves. We cannot do everything for them, there is a part that we can do and that only we can do, and then there is a part which only the patient can do” (Physician 5). Building health literacy is a prerequisite for enabling patients to take control of, and manage, their own disease.

5 Discussion

We found that building health literacy varied depending on the different phases of the MI pathway. During the acute phase, individual and precise information was highlighted to meet patients’ needs. During hospitalisation and at discharge, nurses and physicians started to build health literacy to achieve good health and well-being. During the rehabilitation phase, nurses and physicians emphasised the importance of the patients’ awareness of their potential for achieving good health and well-being through adherence to medication regimes and lifestyle changes. The study revealed weaknesses in individual and organisational health literacy that needed to be improved.

Health professionals in this study expressed that patients needed short and precise information about treatment during the acute phase. Lack of information during this phase leads to frightening experiences for patients (Bårdsgjerde et al. 2019). It is vital to increase health professionals’ competence so that they understand the importance of clear and individualised communication during the acute phase of MI. Previous research supports this finding (Decker et al. 2007; Höglund et al. 2010; Valaker et al. 2017; Bårdsgjerde et al. 2019).

Health professionals described that teachable moments often occurred during hospitalisation. These moments, which occur naturally when people experience stressful life events, make people more receptive to developing knowledge and skills and to adopting risk-reducing health behaviour (Rowlands et al. 2019). Research has shown that many patients stop taking life-saving medication prescribed as secondary prevention after an MI (Pettersen et al. 2018; Bjoerklund et al. 2020; Lopez-Jimenez and Gersh 2020). It is therefore important that health professionals utilise these teachable moments to improve patients’ health literacy and their understanding of adherence to taking medication, especially for long-term treatment. It requires in-depth knowledge to understand how medication can prevent the disease from developing. Patients need in-depth knowledge and a high level of health literacy to understand and assess the importance of compliance. In our study, the health professionals emphasised the importance of using the teach-back technique to assess patients’ understanding of provided information. The teach-back technique has been proven as a valuable intervention for increasing health literacy regarding secondary prevention of cardiovascular disease (Beauchamp et al. 2022; Byrne et al. 2023). Health professionals need a comprehensive approach in order to plan, implement, and assess learning processes to build health literacy (Kvangarsnes et al. 2023; Kvangarsnes et al. in press). The European Society of Cardiology guidelines emphasise the importance of including the patient’s perspective in treatment and care. The guidelines recommend person-centred care to ensure that patients’ preferences, needs, and values are taken into account throughout the clinical pathway (Byrne et al. 2023). Studies have shown that a person-centred approach leads to satisfied patients and achievement of treatment outcomes (Fors et al. 2017; Pirhonen et al. 2019; Wolf et al. 2019).

This study revealed shortcomings in organisational health literacy in the clinical pathway of patients with MI. These included a lack of continuity in the short and fragmented pathway, lack of paper-based written information material, and poor documentation of information in patients’ records. Previous research has similar findings, showing that it is challenging to achieve a seamless flow of information in treatment and care during the MI pathway (Valaker et al. 2020).

Using digital information requires access to digital devices and skills. Population surveys in Norway have shown that a substantial proportion of the population is well prepared to use digital health services. Nevertheless, older people, immigrants, people with long-term illnesses, and people with low levels of education still have inadequate digital skills (The Norwegian Directorate of Health 2020, 2021). Many patients need personal assistance to access equipment and navigate digital learning resources. Health professionals in our study expressed challenges in using digital information resources. The acute illness reduced some patients’ abilities to absorb information, and most of the patients lacked the digital devices needed to apply digital health information.

This study showed that the short and fragmented MI pathway hinders building health literacy. Physicians experienced that the system for documenting patient information was poorly developed. We suggest the implementation of a unique medical record process which follows the patient throughout the pathway with a specific section for patient information/health literacy. This would benefit both health professionals and the patient in planning, implementing, and assessing health information and education. We think this will strengthen continuity in building health-literate patients.

The health professionals in our study reported that patients have good learning outcomes from participating in cardiac rehabilitation programmes, which is in line with earlier research (Brown et al. 2013; Ghisi 2014; Dibben et al. 2021). The cardiac rehabilitation programme employs a person-centred approach and a family perspective which create an environment which supports lifestyle changes and medication adherence. Support from family members has also been shown to be effective in increasing knowledge and improving physical activity (Beauchamp et al. 2022). Norwegian studies have shown worrying results regarding attending cardiac rehabilitation among patients after MI (Olsen et al. 2018; Norekvål et al. 2023). Geographical variations across the country are identified, and a call for action is needed to improve the follow-up care of MI patients (Norekvål et al. 2023).

Based on this study and previous research, we argue that building health literacy is important for achieving SDG 3 (Good health and well-being) for patients with heart diseases. Increasing patients’ health literacy regarding medications and lifestyle changes after an MI may reduce mortality from non-communicable diseases, which is a specific target for SDG 3. Achieving this requires collaboration between health professionals, healthcare organisations at different levels, and patients and their family caregivers. This collaboration is thus linked to SDG 17: Partnership for the goals. Further research on health literacy and its effects on patients’ good health and well-being is warranted.

6 Strengths and Weaknesses of the Study

Interviews with nurses and physicians provided a rich and nuanced understanding of health professionals’ experiences with building health literacy during different phases of the MI pathway (Polit and Beck 2020). This provides new insight into how health professionals encounter patients’ needs during the pathway. Nurses and physicians play a crucial role in building health-literate patients. The findings in our study are of great importance for the nurse and medical professionals involved in cardiac care.

We have not included data from a patient perspective in this study, which might be considered a weakness. Interviews with patients might have provided a more comprehensive understanding of the phenomenon of health literacy in the MI pathway.

The study was conducted in the context of health systems in Norway, which might also be a weakness regarding the transferability of the findings (Polit and Beck 2020). However, several of our findings could potentially be transferable to other countries with similar healthcare systems.

7 Conclusion

Building health literacy in the MI pathway is a joint responsibility, involving the individual patient, the health professionals, and the healthcare system. This study pinpointed the importance of utilising teachable moments during the pathway. Organisational health literacy should be developed to utilise those moments, and the health professionals must be aware of pedagogical tools to increase individuals’ health literacy. Collaboration between health professionals and organisations involved in the pathway should be improved to achieve continuity in building health literacy. This study emphasised the importance of the cardiac rehabilitation programme to increase individual health literacy. These programmes have a person-centred approach and include the perspective of the family which is important for creating an environment supporting good health and well-being for the patients and their families. It will be important to assess the use of digital technologies in cardiac rehabilitation programmes in the future. Digitalisation of these programmes might not only be an important supplement to existing programmes but also an opportunity for patients who do not have access to cardiac rehabilitation programmes because of travel distances, work, or family obligations.