Women’s experiences of Takotsubo cardiomyopathy in a short-term perspective – a qualitative content analysis Rønnaug M. Dahlviken RN, MScN (Student, Staff Nurse)1,2, Bengt Fridlund RNT, PhD, FESC (Professor)1,3 and Lars Mathisen RN, PhD (Dean, ICU Staff Nurse)4,5 1
Institute of Nursing, Bergen University College, Bergen, Norway, 2Department of Cardiology, Oslo University Hospital, Oslo, Norway, School of Health Sciences, J€ onk€ oping University, J€ onk€ oping, Sweden, 4Lovisenberg Diaconal University College, Oslo, Norway and 5 Department of Cardiothoracic Surgery, Oslo University Hospital, Oslo, Norway 3
Scand J Caring Sci; 2015; 29; 258–267 Women’s experiences of Takotsubo cardiomyopathy in a short-term perspective – a qualitative content analysis
Background: Takotsubo cardiomyopathy is a reversible condition mimicking acute myocardial infarction. The phenomenon is associated with emotional and physical stressful trigger events. Evidence-based patient counselling should be based on disease-specific knowledge of patient experiences. Aim: The aim of the study was to describe women’s experiences of Takotsubo cardiomyopathy in a short-term perspective. Design: The study design was explorative and descriptive. Method: Semi-structured interviews were conducted with 14 women diagnosed with Takotsubo cardiomyopathy, 1 day to 9 months after hospitalisation. The transcriptions underwent qualitative content analysis. Findings: The main theme that emerged was Takotsubo cardiomyopathy as a continuous process of making sense and adapting. To begin with, understanding and coping with signs and symptoms were described as having a diversity of signs and symptoms, taking actions towards
Introduction The recently recognised phenomenon Takotsubo cardiomyopathy (TTC) is rare, but increasingly identified in cardiac patients (1). The diagnosis is unfamiliar to both patients and many healthcare professionals, accounting for 1–2% of hospitalisations suspected to be acute coronary syndrome (ACS) (2).
Correspondence to: Rønnaug M. Dahlviken, Department of Cardiology, Oslo University Hospital, Rikshospitalet, Postbox 4950 Nydalen, 0424 Oslo, Norway. E-mail: [email protected]
signs and symptoms, receiving treatment for suspected ST/non ST-elevation myocardial infarction diagnosis and finally being diagnosed with Takotsubo cardiomyopathy. Understanding the context of illness was expressed as getting treated for Takotsubo cardiomyopathy diagnosis and having previous stressful conditions of life. The changing perspective that emanated was a combination of having prospects and expectations and experiencing limitations. Finally, managing to live with Takotsubo cardiomyopathy was manifested as returning home with the illness and receiving follow-up health care. Conclusion: Information on regaining prior health status and capacity within a short-term perspective may not be accurate. These women struggle and require education and counselling from healthcare professionals to comprehend and manage having a Takotsubo cardiomyopathy diagnosis. Women experiencing Takotsubo cardiomyopathy may be a target group for holistic and individual health care with a longer duration of follow-up. Keywords: Takotsubo cardiomyopathy, women, patient experiences, content analysis, sense of coherence, holistic nursing. Submitted 25 February 2014, Accepted 20 May 2014
Unique features of TTC are the clinical presentation mimicking ACS, the vast affection of postmenopausal women (90%), a preceding emotional or physical stressful event (71%) and the characteristic reversible cardiac wall motion abnormalities (1, 3). Chest pain and dyspnoea are the most frequent initial symptoms resembling ACS. Additional similarities are elevated cardiac biomarkers and ECG changes (4). An urgent angiogram is generally required to differentiate the two diseases as severe obstructive coronary disease rarely coexists with TTC (1, 4, 5). Initial management is directed towards the suspected myocardial ischaemia. Optimal management of TTC has not yet been established (1). Treatment is considered relative to the severity of the heart failure, which can range © 2014 Nordic College of Caring Science
Women’s experiences of Takotsubo cardiomyopathy from moderate symptoms to cardiogenic shock. Patients require monitoring for complications such as left ventricular failure, pulmonary oedema, arrhythmias and apical thrombus formation (6). The relationship between sudden death and TTC is uncertain. Generally, the prognosis is favourable after the acute phase. Cardiac function has been reported to normalise within weeks (2). Recurrence rate is approximately 3.5% (4). The aetiology and pathophysiology of TTC remain uncertain. Theories put forth are related to catecholamine excess, multivessel epicardial or microvascular spasm or dysfunction (1, 6). Better understanding of these mechanisms appears to be the focus of current research, whilst knowledge regarding patients’ own experience of TTC is scarce. Accordingly, evidence-based guidelines at an early stage of development represent a challenge for healthcare professionals. The unique features of TTC call for patient education and counselling based on descriptive research of patient experiences. The aim of the study was to describe women’s experiences of TTC in a short-term perspective.
Background The scarcity of research on patients’ experience of TTC led to a review of previous research on women’s experience of ACS and research related to psychological and other relevant aspects of TTC. The purpose of a review on related ACS literature was to understand the early stage of TTC. The most frequent acute ACS symptoms in women appear from the chest area and left arm, in addition to sweating and dyspnoea. A range of other, sometimes atypical, symptoms occur (7–9). Prior to the acute symptoms, women often experience various early warning signs; prodromal symptoms (10, 11). It is difficult to interpret and understand these symptoms, due to symptom diversity, a lack of awareness and general uncertainty. Downplaying, neglecting, attempting to alleviate the symptoms and having concerns for the family are factors that contribute to a delay in seeking medical assistance. Health care is finally sought when the severity of symptoms escalate (12–17). Women with ACS perceive the time prior to the cardiac event as stressful and consider stress to be the cause of their illness (18, 19). The stress emanates from within, featured as personal traits, or from the immediate surroundings (19). Quantitative approaches have aimed to identify the role of traits, personality and stress management in patients with TTC. A high anxiety trait is common, although neither significantly more common than in patients with myocardial infarction, nor associated with worse clinical outcome (20). A distressed personality is more often seen in TTC patients than in patients with myocardial infarction, especially in patients with emotionally triggered TTC. A social inhibition component © 2014 Nordic College of Caring Science
seems to be of importance (21). This suggests that individual trait characteristics predispose to stress-induced events (21, 22). Compared with healthy individuals, altered stress management strategies are seen in patients with TTC (23), such as difficulty in de-emphasising a stressful event. Limitations included the ability to distract themselves, to control the stressful situation, the reactions and to apply positive self-instructions (23). However, when comparing the stress management strategies in the women with TTC with women with ACS little difference is noted (24). Compared with patients with myocardial infarction, one might assume that having a transient condition that resolves within weeks would be more favourable in most ways. Recent findings suggest that at 1 year after the cardiac event, patients with TTC have a significant decrease in psychological general well-being and health-related quality of life (25). TTC patients have a greater increase in depressed mood and the percentage of patients with increased psychological distress is greater than in patients with myocardial infarction. However, physical quality of life and total cardiac-related quality of life are more decreased in patients with myocardial infarction (25).
Holistic nursing The nature of nursing is in itself holistic, viewing the person as a whole (26). A holistic nursing approach is founded on the patient perspective acknowledging individual’s subjective experience about health, health beliefs and values (27). This concept addresses interconnected elements of body, mind, emotion, spirit, socio-culture, relationships, context and environment (27). As a reply to the salutogenetic quest, why some individuals become ill after stressful situations and some do not, it is considered that health is influenced by how individuals experience the world (28). Comprehensibility refers to whether the confronting stimuli make sense from a cognitive perspective. Manageability addresses whether the available resources are adequate to meet the demands posed by the stimuli. Meaningfulness is the motivational component, determining whether a situation is worthy of commitment and engagement (29).
Methods Design and method description The study design was explorative and descriptive using a qualitative approach based on Graneheim and Lundman’s conceptualisation of qualitative content analysis as a method for systematic text analysis (30). The method aims to attain a condensed and broad description of the phenomenon, focusing on the subject and context and emphasising differences and similarities within the text
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(30). During interpretation, the identified meaning units undergo interpretive coding, resulting in categories and themes, expressing the various depth and level of abstraction. The manifest level reflects visible and obvious content whilst the latent level reflects the underlying meaning of the text (30). Interpretation of data with consideration of both levels, provides for more insightful and meaningful findings than interpretation at a single level. An inductive approach was undertaken within a perspective of salutogenesis and holistic nursing.
Participants Inclusion criteria were women diagnosed with first time TTC according to Mayo Clinic criteria (1), individually confirmed by cardiologists. Eligible women were identified from the coronary care units at two university hospitals from January 2012 to March 2013. Participation was requested either prospectively during hospitalisation, or retrospectively by mail correspondence inviting potential candidates to participate. Eight prospective and 16 retrospective candidates were approached for recruitment, resulting in a total of 14 participants (Table 1).
Interviews Individual semi-structured interviews were conducted. An interview guide was developed, based on a holistic nursing perspective, the researchers’ experiences with TTC patients and experiences from a pilot interview. The opening question aimed at encouraging the women to freely describe their experiences. Follow-up questions aimed to deepen, develop and clarify reflections (Table 2).
Data collection The interviews were performed during the acute hospitalisation, after hospital discharge or as a result of retrospective recruitment. The time from hospital admission to interview ranged from 1 day to 9 months. The interviews were carried out in private hospital rooms, participants’ homes or hotels. One telephone interview was conducted. The first author carried out the audio-recorded interviews and transcribed them verbatim. The duration of the interviews ranged from 16–63 minutes.
Data analysis The transcribed interviews were read several times to obtain a clear summary. Meaning units according to the aim of the study were detected, condensed and coded. The codes were classified into subcategories and categories on a manifest level according to similarities in content and time frame (Table 3). Constituting the latent
Table 1 Sociodemographic and clinical data for women with Takotsubo cardiomyopathy (n = 14) Count Age (years) Mean Range Civil status Married/co-habiting Single Family Having children Highest education level University level Employment Retired Disability pension Full- or part-time employed Living area Urban Rural Cardiovascular risk factorsa Smoking/previous smoking Hypertension Hypercholesterolaemia Family history of coronary heart disease Diabetes Other diseasesb Chronic obstructive lung disease Atrial fibrillation Cerebrovascular accident Musculoskeletal disorders Hiatus hernia Metabolic disorders Diagnosis at hospital admission ST-elevation myocardial infarction Non-ST-elevation myocardial infarction/Unstable angina pectoris Initial heart failure management Continuous positive airway pressure Intravenous vasopressors
67 56–76 13 1 13 5 7 1 6 6 8 4 4 2 6 0 2 2 1 5 2 2 8 6
The women had 0–3 cardiovascular risk factors each. The women had 0–4 other diseases each.
content, subthemes were abstracted and one main theme reflecting the underlying meaning was finally formulated (Table 4). The main researcher is a cardiac nurse specialist and MScN graduate. All researchers have extensive experience in caring for cardiac patients, whilst the second author has considerable methodological experience.
Ethical considerations The study confirmed to the principles outlined in the Declaration of Helsinki and has been approved by the Norwegian Regional Committees for medical and health © 2014 Nordic College of Caring Science
Women’s experiences of Takotsubo cardiomyopathy Table 2 Interview guide used as a tool for interviewing women with Takotsubo cardiomyopathy Can you describe what happened from the preceding event until a TTC diagnosis was established? What did you find demanding during the event and the following experiences? What made the event and the following experiences manageable? What were you thinking of during and after the event? What was your attitude towards the event and the following experiences? What emotions were triggered during and after the event? What has this experience meant to you?
research ethics. Maintaining the participants’ integrity was a main priority. Informed consent was obtained from all participants based upon information about the study, voluntary participation, the possibility to withdraw without affecting their care in any way and that data would be treated confidentially.
Results The qualitative content analysis resulted in 10 categories that constituted the manifest content and four subthemes that expressed the latent content. The main theme emerging was women experiencing TTC as a continuous process of making sense and adapting. This theme reflected the women’s thoughts and reflections upon a process that began at the onset of the acute symptoms and developed over months.
Understanding and coping with signs and symptoms Having a diversity of signs and symptoms. The women described a variety of signs and symptoms located in the chest region, the back, the throat, the arms, the shoulders and the whole upper body. The discomfort or pain was characterised as moving around, radiating, heaviness, stretching, stinging or being diffuse. Various degrees of intensity were described. Respiratory difficulties, unconsciousness and feeling pale and cold occurred.
Women also experienced having related or similar symptoms from days to months prior to the acute stage. The emotional response to the symptoms was one of anxiety and fear, although denying having any emotional response was also experienced. An emerging acknowledgment of something being wrong was followed by interpretation of the symptoms and assessment of the health threat. Suspected origins were heart conditions, familiar or benign causes. Interpretation was scarce if the symptoms appeared suddenly or the women were preoccupied with concerns regarding the preceding event. In assessing the situation, attitudes towards disease and health care were contributing factors. Being tolerant to and managing pain well were described. Having concerns about troubling the healthcare system, not having serious enough symptoms, enduring the symptoms, feeling stupid and complaining were expressed. These attitudes influenced the following actions. Taking actions towards signs and symptoms. Various degrees of delaying actions occurred. Hoping for and expecting the symptoms to disappear, or being uncertain towards appropriate measures were described. Trying to ignore or divert the symptoms was upheld despite severe symptoms, and daily chores were carried out despite great struggle. Alleviating the symptoms was attempted by taking analgesic or sedative drugs, relaxing, moving or taking nourishment. At some point, relatives or others were involved, although hesitations towards worrying relatives were expressed. Eventually, the women acknowledged the need of medical assistance. This came as a result of persistent or increasing symptoms, insecurity or comprehending the lack of coping. A primary provider, emergency units or paramedics were contacted. They responded with urgent actions, although delaying advice also occurred. Receiving treatment for suspected ST/non-ST-elevation myocardial infarction diagnosis. The rapid actions and need for medical aid at a university hospital established seriousness to the situation, and caused either fear or calmness.
Table 3 Example of the qualitative content analysis procedure of the 14 interviews with women with Takotsubo cardiomyopathy, from codes to subtheme Codes
Strain and concerns More than one incident Stress over time Changed situation Caring Engaged Lacking self-consideration High standards
Challenging circumstances over time
Having previous stressful life conditions
Understanding the context of illness
Personal properties and characteristics
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Having a diversity of signs and symptoms
My heart vaulted, like a collapse, like bubbling My God, I thought. I was so sick. I don’t understand how I survived I tried to recognize the sensation, but suddenly I did not remember which arm should hurt I thought it was foolish. What should I say at the emergency room, where does it really hurt? I usually think that you shouldn’t see the GP unless the symptoms last three days I managed to endure the night I tried not to show it. Did not want my husband to get nervous That was when I realized I couldn’t manage it after all I was scared and upset when I was brought to the university hospital, but I didn’t need to be I was not scared or horrified or anything, but I was given some morphine I didn’t feel that sick. I did not think at any point that I could die I lit up. I have certainly not had a heart attack, and I am grateful for that The whole situation was challenging. The change from believing you have a healthy heart, and now this It’s unfamiliar. I feel like a guinea pig. I’m insecure because I do not know what heart failure is A nurse sat down next to me and said: has something happened in your home recently? I did not receive much attention, the staff did not check on me I was so upset and agitated and hysterical like I never tend to be, and I was in pain I was sad, but what happened was really no surprise in any way After the recent illness, I’ve felt different than before. More anxious, and a little more depressed Many different things happened that I took part in. Nothing sudden or intense, no particular incident I tend to worry. Because I want everyone around me to be well I think and hope that the heart failure improves. That it doesn’t take too long In the future I must take more care of myself I promised myself that I’ll be a bit more careful That is my personality. I cannot change my personality. The prospects are not so good then It was good to come home, but I was so insecure. The symptoms being so vague when I became ill I guess I’ve realized how serious it has been later, seeing how long it has taken If I experience a situation where I get a little scared, will it reoccur? What do you think about that? You feel the insecurity amongst people in the rural areas of the healthcare system What made it okay was that I returned to the local hospital for the first months afterwards Other cardiac patients were called in to participate in a group. I wasn’t offered anything like that Receiving follow-up healthcare
Managing to live with TTC
Having prospects and expectations Having limitations Returning home with TTC
Understanding the context of illness
Understanding and coping with signs and symptoms
Getting treated for TTC diagnosis Having previous stressful life conditions
Receiving treatment for suspected STEMI/NSTEMI diagnosis Being finally diagnosed with TTC
Taking actions towards signs and symptoms
Table 4 Overview of quotations, categories, subthemes and theme from the content analysis procedure of the interviews with women with Takotsubo cardiomyopathy
TTC as a continuous process of making sense and adapting
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Women’s experiences of Takotsubo cardiomyopathy Fear was mostly caused by the angiogram procedure and findings. The calmness was attributed to the effects of morphine, safety provided by the paramedics or a sense of confidence in university hospitals. The urgent actions did not correspond with the women’s self-evaluation of their condition and health threat. They perceived it less serious and responded with shock, astonishment or disbelief. In retrospect, the women described this as a stage characterised by lacking insight, still keeping focus on the preceding event. Being finally diagnosed with TTC. Being presented with the TTC diagnosis, the initial and primary response was relief. This was attributed to the negative angiogram and information about treatment and a favourable prognosis. Having a tangible diagnosis and initial knowledge about the causes were also considered to be positive factors. Elements that caused concerns were references made to others with heart failure, the insecurity and fear of having a heart failure diagnosis and a lack of knowledge regarding the diagnosis.
Understanding the context of illness Getting treated for TTC diagnosis. The women described their experiences with healthcare professionals as being attentive, caring, trustworthy, efficient and providing safety. Feeling of insecurity were expressed upon transfer to a local hospital. How the women perceived the healthcare professionals’ knowledge of TTC strongly affected their confidence in the health care provided. Information was given about the probable stress-related cause, the favourable prognosis and expected recovery within a few months. The women appreciated repeated verbal, visual and written information, which also was extended to relatives. Having previous stressful life conditions. When the women were confronted with a possible stress-related cause to their disease, an evaluation of previous stressful conditions in their lives commenced. The event preceding the acute symptoms were physically or emotionally challenging and caused feelings of tension, stress, anger, despair, panic, worry and exhaustion. Denial of being afflicted by the event and not evaluating or understanding that this could precede TTC was also expressed. Personal characteristics were regarded as stress-inducing, representing an increased risk of having TTC. The women viewed themselves to be sensitive, easily stressed, engaged, being caring and having concerns about the well-being of others. They described having high standards and capacity for work, as well as being perfectionists. The women’s reflections considered challenging circumstances in their life over time. Concerns for the © 2014 Nordic College of Caring Science
health conditions of family members or themselves, anxiety and depression, sadness and grief, change of employment situation and having many tasks and projects were elements that the women needed to manage in their everyday life.
Changing perspective Having prospects and expectations. When reflecting upon future perspectives, the women expressed hopes and expectations towards regaining health. They acknowledged a need to change lifestyle factors such as increasing physical activity and quit smoking. Changing attitude by becoming more assertive, more determined, starting to ignore some things and become less worried was regarded to be important. Thoughts about not resigning and becoming passive due to the disease were described. To fully relate to the situation, the women expressed a need to gain a clarification of the TTC diagnosis. Having limitations. The reflections upon the future made the women acknowledge limitations. They expected to have temporary restrictions, mainly according to physical capacity. The women who considered personality and human character to be a contributing cause of disease regarded this as elements that would be difficult to change, giving a poor future outlook. A healthy acknowledgement of increasing age implying decreasing health was present. Related thoughts regarding death, how short life is and how future plans should be made in a shorter time perspective were described. Other limitations were inability to recognise signals on excessive stress levels, seriousness of symptoms and when to seek medical aid. Uncertainty towards future measures and behaviour towards regaining health and prevent recurrence were also concerns.
Managing to live with Takotsubo cardiomyopathy Returning home with TTC. Over time, the women experienced greater insight. They did not realise the seriousness of TTC diagnosis until they returned home and experienced the struggle of daily living with the diagnosis. The women described impaired physical, mental and social capacity. They expressed this as feeling reduced and less strong, not managing as many chores, not being able to concentrate and being depressed. They adjusted to the impaired capacity by planning the day carefully, resting and taking breaks, working slower and not being as meticulous. The working women were not able to fully return to work as early as expected. They adjusted to work by getting additional sick leave, working part time and reducing the workload, pace and responsibilities. Persistent symptoms were experienced described as being similar to or more diffuse than the initial symptoms. This
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resulted in readmissions and caused uncertainty about regaining health and having a favourable prognosis. After returning home, the women described anxiety and fear of stress. A perception that stress could jeopardise their health was present. Measures were taken to prevent stress, such as avoiding conflicts, others’ worries, pushing oneself or exaggerating. Communicating to others the facts and implications of a TTC diagnosis could be difficult; the disease was not visible and it was complicated to comprehend and describe. Relatives, co-workers and others expressed various degrees of understanding when experiences were shared. Women who hesitated to include others did not feel capable in explaining the illness or did not wish to let others in on a highly private experience. Receiving follow-up health care. After returning home, the follow-up care from local hospitals and GPs varied. The women perceived insecurity and a lack of competence and understanding from healthcare professionals. Experiences of seeking health care revealed a large variation regarding practitioners0 knowledge of TTC. It was reassuring when attending physicians or GPs sought advice from local and university hospitals. The patients’ collaboration with the GP was positive, although inaccurate advice occurred. Follow-up care in a nurse-led outpatient clinic implied having frequent appointments the first months with cardiac assessment and medication adjustments. This provided safety and was valued. Confusion and insecurity was expressed concerning the diagnosis, links to other diagnoses, future expectations, prevention, medical treatment and follow-ups. The women were interested in learning about experiences of the other women in the study, expressing the desire for a network of peers. Follow-up health care at the university hospitals and other follow-up programmes was suggested as potentially helpful measures. This might include information regarding the illness and medical management, as well as advice and knowledge-based counselling on prevention efforts and lifestyle changes from healthcare professionals who are experienced with TTC patients.
Discussion In the continuous process of making sense and adapting, the different key concepts of sense of coherence (SOC) were revealed (29). Struggles with comprehensibility and manageability were prominent features. The women experienced an initial and more familiar ACS diagnosis, later replaced with the unfamiliar TTC diagnosis and followed by the challenges of coping with this phenomenon. The various symptom locations, qualities and intensities that women with TTC experience have also been
described by women with ACS (7–9). Symptom diversity, the context, the preceding event and lacking knowledge concerning women’s ACS symptoms may all contribute to the struggle for interpretation of symptoms and therefore affect comprehensibility. The anxiousness, fear or not having any emotional response to the temporary ACS diagnosis may be attributed to impaired comprehension. In women with TTC and ACS, similar attitudes seem to delay an emerging acknowledgement, demonstrated by enduring the symptoms and not troubling family and healthcare system (14, 16). Actions following the symptoms are also similar in women with TTC and ACS (14). When awaiting and selfcaring strategies failed, the women acknowledged a low sense of manageability (29). Family members, others or healthcare professionals were therefore included. The acute measurements taken upon the potential ACS diagnosis did not correspond with how women selfevaluated their condition, affecting comprehensibility and meaningfulness. The preceding event and state of shock may be contributing factors. When the ACS diagnosis was disproved, a response of relief was expressed based on TTC being a more favourable diagnosis, restoring comprehensibility (29). The triggering effect of a preceding event has been established in the TTC literature (1, 2). Consistent with this knowledge, the women were confronted with potential stressful trigger events when being diagnosed with TTC. However, the preceding event provided an inadequate causal explanation. Stress was therefore evaluated from a wider perspective in time and as personal characteristics. Similar experiences have been described by women with myocardial infarction; stress emanating from within is described as restlessness and worry, anxiety, having a meaningless life and various illnesses. Depression, loneliness, frustration, demanding responsibilities and burdens is considered as stress from immediate surroundings (19). The evaluation of various stressful conditions aimed at increasing comprehensibility of the TTC phenomena (29). A wider perspective of stress has been less featured in the TTC literature. Survey findings suggest that patients with TTC have difficulties in de-emphasising a stressful event and limited ability to distract themselves, to control the stressful situation and their reaction and applying positive self-instructions (23). These altered stress management strategies may shed light on the women’s experiences of stressful conditions in their lives prior to the TTC onset. However, the altered stress management strategies in women with TTC differ little from women with ACS (24), and may therefore not be considered a unique feature of women with TTC. The women’s reflections upon personal characteristics can be supported by results of ‘high anxiety trait’ and © 2014 Nordic College of Caring Science
Women’s experiences of Takotsubo cardiomyopathy ‘distressed personality’ as a common finding in patients with TTC (20, 21). This suggests that individual trait characteristics predispose to stress-induced events (21, 22). Women describing themselves as perfectionist and the hesitation to include others in the acute symptoms may be attributed the ‘social inhibition’ component, which seem to have a key role in the distressed personality findings amongst patients with emotionally triggered TTC (21). Consistent with current knowledge of TTC, the women had expectations towards regaining health. This motivated them to make lifestyle and attitude changes to regain health and to avoid TTC recurrences, indicating that they perceived meaningfulness. Parallel to these positive expectations, the experience of limitations, uncertainty and concerns towards future measures reveal ambivalence regarding how favourable a TTC diagnosis is. This ambivalence may impair both comprehensibility, manageability and affect the motivation to carry out salutary measures, such as working on lifestyle and attitude changes (29). After returning home, experiences did not match expectations. The impaired physical, mental and social capacity the women describe appear similar to survey findings at 1 year after the cardiac event that indicate a decrease in the emotional, physical and social domains of health-related quality of life (25). A need for adaption to impaired capacity was required to maintain manageability (29). Difficulty in communicating the TTC phenomenon to others implies less talking, sharing and receiving confirmation. What may be considered as important for coping with stress is therefore impeded (31). The unfulfilled expectations, the communication difficulties, the feelings of depression and anxiety and fear of stress the women describe appear to extend from the short term to later in the trajectory (25). It is possible that coping strategies and healthcare needs identified soon after TTC, may direct interventions that could affect longer term outcomes. Follow-up in a nurse-led outpatient clinic may be beneficial in both identifying and meeting such healthcare needs, or making an appropriate referral. The range of experiences of health advice, actions and follow-up after returning home, suggests a variance in health care related more to insufficient knowledge than tailored to individual needs. This may be related to a lack of clinical guidelines addressing the experiences of TTC patients. Insufficient patient education and counselling appear to bear on confusion and insecurity after returning home, thus impairing comprehensibility and manageability (29). High comprehensibility gives a better basis to handle life for patients with myocardial infarction (32). This may apply to women with TTC as well.
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Methodological considerations Trustworthiness of qualitative studies can be evaluated according to credibility, dependability, conformability and transferability (33, 34). The size and heterogeneity within the group and the combination of a prospective and retrospective inclusion provided different perspectives on TTC, contributing to the credibility. Variation in patient management and little knowledge of the encounters between informants and healthcare professionals limits the accuracy of the context descriptions, and therefore challenges the contexts’ confidence. Response bias may be considered in the retrospective group, attracting women who struggled with TTC and viewed the study as a chance to seek information and advice. Cardiologists were consulted to validate the TTC diagnoses. The first author carried out all interviews. Variation due to different circumstances and various timeframes may influence the dependability. During the interviews, statements were clarified and scrutinised. The interviewer’s previous knowledge as a cardiac nurse specialist may have biased the interviews. The pre-understanding included conceptions regarding prehospital similarities to women with ACS and regaining of prior health status within weeks. Awareness, reflection and keeping an open mind regarding the impact of preunderstandings were consciously endeavoured throughout the whole process. The themes and categories were discussed with and agreed upon by the highly experienced second author. In presenting the quotations (Table 4), categories and themes confirmability is provided to others. This gives an opportunity to judge upon the similarities within and the differences between the categories and themes. Transferability has been endeavoured. One can assume that the recruitment from two large university hospitals and the women’s various background data support the findings to be trustworthy of patients suffering from TTC.
Conclusion The method and findings of this study allows for a broader understanding of the subjective experience of TTC. The patients experienced both acute and prodromal symptoms similar to women with ACS. The experiences at an early stage are influenced by the preceding events. However, these stressful events are not regarded as severe enough to bring on disease, and alternatively a broader perspective on stress is suggested. Experiences of impaired capacity and persistent symptoms throughout the following weeks and months do not conform to expectations regarding the time to or the extent of rehabilitation suggested in the existing body of literature.
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In the process of making sense and adapting, the women struggle with comprehensibility and manageability of having a TTC diagnosis. Expectancy towards regaining prior health status within a short-term perspective may not be accurate or beneficial. More research on patients’ longitudinal experience of TTC is needed to improve follow-up health care over time. The struggle for comprehensibility and manageability of having a TTC diagnosis should be taken into consideration and explored in the provision of health education and counselling. Women with TTC may be a target group for a holistic approach to health care, with support and follow-up over a longer period of time from healthcare professionals with adequate knowledge of the subjective and objective impact of TTC.
Acknowledgements Scientific and practical contributions from Ole Geir Solberg MD and colleagues at Oslo University Hospital are greatly appreciated.
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Author contributions Rønnaug M. Dahlviken author is a MScN graduate and participated in all parts of the study, guided by Bengt Fridlund and Lars Mathisen. Bengt Fridlund has particularly contributed in the planning and design of the study, the analysis, the discussion and general writing. Lars Mathisen has particularly contributed in the planning and design of the study, the collaboration with another research team, ethical approval, application for funding, the discussion and general writing.
Ethical approval The study has been approved by the Norwegian Regional Committees for medical and health research ethics. Reference number: 2011/1361 REK sør-øst D.
Funding Funding has been received from The Raagholt Foundation.
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