Experiences of living with symptomatic atrial fibrillation

Abstract Aim To explore the experiences of living with symptomatic atrial fibrillation. Design This study, with a descriptive qualitative design, was performed using semi‐structured individual interviews. Method Six women and nine men with symptomatic atrial fibrillation were included. The transcribed interviews were analysed using qualitative content analysis. The COREQ checklist was followed. Results The analysis resulted in a main theme, namely balancing life and included the themes striving for illness control, becoming a receiver or an active partner in care and dealing with changed self‐image. The participants strived to understand their illness, prevent attacks and manage anxiety. Some of the participants were not involved in decision‐making, were uninformed about self‐care measures, reported a lack of continuity in care and felt that the doctors focused on information about the medical part of care.

. Increased severity of symptoms linked to AF may also be associated with increased depression and anxiety (Thompson et al., 2014). One review shows that patients with AF have lower HRQoL than both healthy persons and patients with other cardiovascular conditions (Son et al., 2019). A Swedish study demonstrates the existence of both physical and existential limitations in everyday life that negatively affect well-being in patients with AF (Ekblad et al., 2013).
It is recommended that management of AF should include stroke prevention, symptom control and management of risk factors (Hindricks et al., 2020). It is also recommended that the patient should be involved, informed and empowered regarding the disease and self-management (Kirchhof, Benussi, et al., 2016).
However, previous research reports that patients lack advice and support on managing the disease . Patients with newly diagnosed AF report that the information provided at consultations is difficult to understand and they additionally have difficulty being involved in decision-making about their own care (Thrysoee et al., 2018). As previous research has shown, symptomatic AF affects several factors such as anxiety, depression, HRQoL and hospitalizations, research has also shown that it can be difficult to live with and manage the symptoms of AF.
More research is needed to gain perspective from those who live with symptomatic AF in order to improve care. The purpose of this study was therefore to explore the experiences of living with symptomatic AF.

| Design and context
This interview study, with a qualitative design, was part of a larger main study that aimed to explore patients' experiences, quality of life and illness perceptions in AF. The main study recruited 180 participants with AF who were admitted for electrical conversion at a university hospital in Sweden.

| Participants
In this study, 15 participants with symptomatic AF from the main study were included through purposive sampling to get variations in age, gender and experience of living with AF. Symptomatic participants were those who described any kind of symptoms related to AF at the time of inclusion in the study. Six women and nine men between 56 and 81 years of age (median 70), were approached by the second and last author by telephone and invited to the study, and all agreed to participate. They had lived with the disease for ½ to 10 years (median 3). They had varying levels of education, marital status and employment (Table 1). Additional inclusion criteria were a willingness to participate in interviews, being Swedish speaking and aged 18 years or older.

| Data collection
The individual interviews were semi-structured and followed an interview guide developed by second, third and last author. The focus was on living with AF, specifically how the participants manage AF, their participation and decision-making in care, their perception of the illness, and their future expectations. To get a deeper understanding, probing questions such as 'Can you please tell me more?' were asked. The interviews were conducted between June 2018 and April 2019 by the last and the second author and two nurses who were under specialist training. None of the interviewers was involved in the care of the participants. The interviews were held either in their home (n = 6) or at the hospital in a quiet and secluded room (n = 9) in accordance with each participant's wishes. The interviews lasted about 20 to 40 min (median 26) and were digitally recorded and later transcribed verbatim.

| Data analysis
The analysis of the text followed qualitative content analysis with an inductive approach according to Graneheim and Lundman (2004 is a method used to identify differences and similarities in experiences and to describe not only the manifest content of the text but also an interpretation of the latent content (Graneheim et al., 2017;Graneheim & Lundman, 2004;Lindgren et al., 2020). To get a sense of the whole, the transcribed text was read through several times.
Text corresponding to the aim was identified. This text was divided into meaning units and condensed and coded upon content. Coding was completed manually. The codes were compared regarding similarities and differences and sorted into subthemes and themes on various levels of abstraction and interpretation. A main theme that captured the essence of the data was formulated. The interpretations in the various steps of the analysis were reflected on and discussed between the authors until consensus was achieved.
Extensive experience in content analysis is represented in the research group. Written informed consent was obtained from all participants. The potential benefits of this study were considered by the authors to outweigh the risks and burdens that participants might experience from participation. Graneheim and Lundmans writing (2004) guided the striving to achieve trustworthiness. For credibility, there was a purposeful selection of participants to get variations in gender, age and living conditions and a range for the length of time people had lived with the disease. The focus was on the same questions in all the interviews to achieve dependability. For transferability, we have given clear descriptions of the data collection, characteristics of participants and context and the process of analysis. Along with the presentation of the results, representatives' quotes were used for demonstrating dependability (Graneheim et al., 2017).

| Striving for illness control
This theme concerns different ways of getting control over the illness with the desire of preserving ordinary life. It applies to both thoughts and action, to understand the illness and predict attacks as well as handling physical and mental manifestations.

| Trying to understand the illness
The participants had varying experiences of being affected by AF.
They described a process that included an understanding that they were ill, understanding why they had AF and understanding what triggered the attacks.
For some, the first symptoms came suddenly, without warn-

| Managing anxiety and symptoms
The unpredictability of the attacks and the fact that AF concerns the heart often created anxiety, especially early in the disease. Treatment with antithrombotic drugs could also contribute to anxiety. In most instances, the participants did not share their anxieties with anyone else but tried to handle them on their own. Anxiety was sometimes more difficult to cope with than the physical symptoms, especially when it occurred at night or when living alone. Many expressed the belief that emotions such as anxiety and stress could aggravate their AF and since AF itself also caused anxiety, they tried to stay calm.
Some managed by finding reasonable explanations for symptoms that did not frighten them or by calmly reasoning with themselves.
I'm talking to my heart: can't you take it easy, we're in bed, everything is calm all around, we do not have to be nervous about anything, nothing dangerous has happened. (p. 5) They also tried to think positively, as in 'I take antithrombotic and heart medication' or 'they will treat me'. Some bought heart rate monitors to get a sense of control; others instead managed anxiety by avoiding checking their pulse.
Several reported side effects of beta-blockers such as fa-

| Being more or less involved
Living with AF is a process that leads to greater insight and impact over time. Participants shared that they had to be active themselves and ask questions to get more detailed information about aspects of the disease other than medication. One participant described how a doctor had tried to force on her medicine that she did not want.
Others reported that they had had an impact on their care and had claimed their right to discontinue medications that produced side effects or to adjust the dosage. Some reported, though, that they trusted and followed the doctor's advice without questioning and were satisfied with that.
We sat and discussed-me, my wife and my doctor. I asked if I could remove that half tablet in the evening. The participants reported that the ability to change outcomes through improved lifestyles contributed to a sense of hope. Hope was also said to be a result of being involved in their care and having a plan for the future, including having a backup plan in case the first one did not work. For some, it was difficult to accept a pacemaker or an ablation, for example, but involvement in care planning gave them time to get used to the idea.
Participants with several diseases often experienced a lack of coordination between clinics with respect to changes in treatment or prior examinations that could involve the discontinuation of drugs.
For this reason, they understood the importance of knowledge and involvement in their care.
The specialists have not been good at cooperating, but I do not know what to demand either. One doctor takes responsibility for one disease, and another for the other disease. And so they make a statement and … but no more than that. I have to make my own decisions. (p. 14)

| Dealing with changed self-image
This theme concerns the perception of self and perception by others. Because AF comes in attacks, physical ability varies over time, leading to difficulties in how to define yourself, as weak or strong, self-managing or a person in need of support.

| Transitioning between weak and strong
Attacks of AF were reported to make them lose energy immediately: Participants reported uncertainty in making plans. For those who had employment outside the house, the attacks could be inconvenient. Some avoided mentioning heart problems when they needed to be absent from work, to avoid scaring co-workers. It was also stated that the symptoms gave feelings of inferiority, which could lead to avoidance of activities.
Last year I was free from attacks for a long time and was planning a trip. Then I caught a cold and the fibrillation returned. I was both angry and sad. (p. 2)

| Accepting changes and dependence on care
As time passed the participants had to accept changes in life, specifically that they could not manage as much as before and they had to live with uncertainty. Participants also realized that AF was a chronic disease with an ongoing need for medical care.

| DISCUSS ION
In the present study, the purpose was to explore the experience of living with symptomatic AF. The intention was to gain deeper in- Some of the participants wanted healthcare staff to take responsibility for their care and felt secure in that decision. However, most participants wanted to get involved in their care and in planning for the future. Several concept analyses have been done regarding the concept of patient participation (Cahill, 1996;Castro et al., 2016;Sahlsten et al., 2008). In a previous study, it was concluded that patients describe patient participation in a broader sense than what healthcare staff and legislation do. Patients want knowledge, rather than being informed, and focus on interacting, rather than only taking part in the decision-making (Eldh et al., 2010). Their results are more in line with the International Classification of Functioning, Disability and Health (ICF), where participation is defined as 'involvement in a life situation' (WHO, 2001, p. 10). This also corresponds to the results of our study, where participants expressed a desire for someone to exchange knowledge with and someone who understood their situation in addition to giving support. Participation in care presupposes a relationship, sharing information and knowledge as well as a mutual commitment to ongoing activities (Sahlsten et al., 2008). However, it is important to look at the patient's specific needs; there are differences in the extent to which patients want to be involved, as our results show. Furthermore, patients with AF with increased uncertainty about the disease and reduced levels of vitality and management in everyday life have lower confidence in decision-making (Hedberg et al., 2018).
Due to fragmented care, with poor communication between the different caregivers, some participants in our study realized the importance of having a good knowledge of AF and the right information about their treatment, to ensure good quality of care.
The lack of continuity and cohesive care was clearly illustrated in a previous Danish study, describing how the lack of communication between different caregivers made it difficult to get balanced information and support on when and where to seek care (Hoegh et al., 2015). The presence of several care providers can increase the risk of interruptions in the care chain, which can lead to the patient and caregivers seeing the patient's needs, resources and planning in different ways.
In this study, the participants described how their self-image changed over time because of AF, from being a strong person to being weak and dependent on care. Altered self-image in connection with the onset of chronic diseases has previously been described in the literature (Ambrosio et al., 2015;Charmaz, 1983).
Ambrosio et al. describe learning to live with a chronic disease as going through a complex multidimensional process (Ambrosio et al., 2015). Healthcare professionals should be aware that the transition from feeling healthy to suddenly suffering from AF may affect a patient's self-image. One study has shown that patients with a high level of understanding of their disease report greater acceptance of the disease, have fewer AF-related symptoms, use more effective coping strategies, and have better control over the disease (McCabe, 2011). Accepting the disease affects HRQoL positively in patients (Jankowska-Polańska et al., 2018). A negative perception of an illness can reduce the chances of recovery and may lead to an increased need for care (Petrie & Weinman, 2006 (Ulin et al., 2015). Implementation of person-centred clinics for patients with AF can therefore improve the care for these patients.

| ME THODOLOG IC AL DISCUSS ION
A limitation of this study is that it was performed in a single hospital. The participants varied in age, the number of years living with the disease and living conditions. However, many participants had a high level of education, which may have affected the results. The research group has broad experience of patients with AF, which could have affected the interpretation of the participants' experience. Given the possibility of preconceived ideas arising from a prior understanding of AF, discussions about the interpretations of the results were held as a group. The fact that there were several interviewers and that interviews were held both at the hospital and in their homes, may have affected the results. By following an interview guide the risk of different content was minimized and there were no major differences in content or length of interviews regardless of where the interviews were conducted.

| CON CLUS ION
Balancing life entails persons with AF having to handle both symptoms and anxiety. Transitioning between strength and weakness and accepting being dependent on care might lead to a changed self-image. To be co-actors in their own care, patients need to be engaged in issues of importance for them, and in creating both shortand long-term goals with healthcare professionals. Accomplishing these outcomes requires continuity and sensitivity from healthcare professionals. There is a need to continue to develop care for patients with AF and to let a person-centred approach permeate all aspects of care.

| RELE VAN CE TO CLINI C AL PR AC TI CE
The experience of living with AF differs between individuals, but for everyone, AF leads to a change, from not having the disease to living with the disease, which in most cases is chronic. To facilitate the transition, healthcare efforts need to be tailored to meet the needs of each unique person, especially soon after diagnosis.
A person-centred form of care may enable greater patient involvement, thereby aiding the transition.

AUTH O R CO NTR I B UTI O N S
The study was designed by Karin Hellström Ängerud and Karin Olsson and they also contributed to data collection. The analysis was conducted by Lena Holmlund, Åsa Hörnsten and Karin Olsson.
All authors contributed to analysis and interpretation of the results.
Lena Holmlund and Karin Olsson drafted the first version of the manuscript, which was revised critically for important intellectual content by all authors. The final version of the manuscript was approved for submission by all authors.

ACK N OWLED G EM ENTS
The authors thank Gisela Vikström and Sara Salomonsson for contributing to the data collection. We also want to thank the participants in this study who shared their narratives.

FU N D I N G I N FO R M ATI O N
This work was supported by the Heart Foundation of Northern Sweden, Strategic Research Area Health Care Science (SFO-V), Region of Västerbotten and Umeå University.

CO N FLI C T O F I NTE R E S T
The authors declared no conflicts of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available from the corresponding author upon reasonable request.