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Managing Uncertainty in Couples Living With Atrial Fibrillation

Dalteg, Tomas MSc, RN; Benzein, Eva PhD, RN; Sandgren, Anna PhD, RN; Fridlund, Bengt PhD, RN; Malm, Dan PhD, RN

The Journal of Cardiovascular Nursing: May/June 2014 - Volume 29 - Issue 3 - p E1–E10
doi: 10.1097/JCN.0b013e3182a180da
ARTICLES: ONLINE ONLY
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Background: Living with a chronic disease such as atrial fibrillation (AF) not only affects the patient but also has implications for the partner. There is a lack of research on couples living with AF and, in particular, how they experience and deal with the disease.

Objective: The aim of this study was to explore couples’ main concerns when one of the spouses is afflicted with AF and how they continually handle it within their partner relationship.

Methods: Classical grounded theory was used throughout the study for data collection and analysis. Interviews were conducted with 12 couples (patient and partner together). There were follow-up interviews with 2 patients and 2 partners separately.

Results: Couples living with AF experience uncertainty as a common main concern. This uncertainty was fundamentally rooted in not knowing the cause of AF and apprehension about AF episodes. Couples managed this uncertainty by either explicitly sharing concerns related to AF or through implicitly sharing their concerns. Explicit sharing incorporated strategies of mutual collaboration and finding resemblance, whereas implicit sharing incorporated strategies of keeping distance and tacit understanding. Time since diagnosis and time being symptom-free were factors influencing afflicted couples’ shifting between implicit and explicit sharing.

Conclusions: Atrial fibrillation affects the partner relationship by bringing uncertainty into couples’ daily lives. Even though this study shares similarities with previous studies on couples living with chronic disease, it contributes to the existing knowledge by presenting a set of strategies used by couples in managing uncertainty when living with AF.

Tomas Dalteg, MSc, RN Doctoral Student, School of Health Sciences, Jönköping University, Jönköping, Sweden.

Eva Benzein, PhD, RN Professor, School of Health and Caring Sciences, Linnaeus University, Kalmar, Sweden.

Anna Sandgren, PhD, RN Senior Lecturer, School of Health Sciences, Jönköping University, Jönköping, Sweden.

Bengt Fridlund, PhD, RN Professor, School of Health Sciences, Jönköping University, Jönköping, Sweden.

Dan Malm, PhD, RN Senior Lecturer, School of Health Sciences, Jönköping University, and Department of Internal Medicine, County Hospital Ryhov, Jönköping, Sweden.

The authors acknowledge the Medical Research Council of Southeast Sweden (FORSS) and the Vinnvård Research Program, Sweden, for financial support.

The authors have no conflicts of interest to disclose.

Correspondence Tomas Dalteg, MSc, School of Health Sciences, Jönköping University, Box 1026, SE-551 11 Jönköping, Sweden (tomas.dalteg@hhj.hj.se).

Living with a cardiac disease, such as atrial fibrillation (AF), affects patients as well as their partners.1 A recent systematic review on how the partner relationship is affected after cardiac disease2 indicates a clear gap in research on how couples perceive and experience AF within their partner relationship. None of the 20 included studies in the review dealt with the phenomenon of AF. Atrial fibrillation is a growing public health problem with high frequency of medical contacts3 and considerable economic healthcare costs.4 Thus, it is important to understand how couples manage their everyday lives. However, few qualitative studies exist on the topic of living with AF. Only 3 such studies, although from a patient perspective, were identified, with the earliest in the context of receiving an implantable cardioverter defibrillator (ICD) with atrial therapies.5 Two more recent studies concern living with AF from a patient’s perspective.6,7 Thus, there is a need to focus not only on the patient but also on the couple.

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Background

Atrial fibrillation is a cardiac arrhythmia8 and is a common chronic disease that has been associated with increased morbidity and mortality.9–11 Individuals who have AF experience symptoms such as palpitations, breathlessness, chest pain, and dizziness, which may limit their strength, stamina, and lifestyle.5,8,12–14 Previous studies have reported that patients with AF experience worse quality of life (QoL) than the general population does,3,9,11 and patients with severe AF symptomatology and high frequency of hospital visits have worse QoL than do other patients with AF.15 Furthermore, individuals with AF can have psychological suffering in the form of anxiety, fatigue, and depression5,11,16 and poor knowledge about the disease and its treatment.17 Partners can suffer as much as patients and experience lowered QoL to the same extent as the patient.1 Thus, having a chronic illness not only has an impact on the afflicted individual but also significantly affects the relationship and the couple’s daily life together. A relationship per se is manifested through the interaction between individuals in which one person’s behavior, or action, has implications for and/or affects the other person.18 The concept of dyads, or dyad-pairs, involves interpersonal interaction and interpersonal relations on a general level and incorporates informal, formal, and professional relationships.19 A partner relationship may be conceptualized as a romantic notion between two individuals manifested through dating, cohabiting, or marriage,20 where the ability to influence each other is important to the functioning of the relationship.18 Moreover, within a partner relationship, the spouse is considered the main source of support, with supportive functions working to either mitigate or facilitate problem solving and coping.21 In addition, such close social relationships have beneficial outcomes for couples regarding health status, morbidity, and mortality.22,23 However, there is a lack of research on couples living with AF and how they experience and deal with the disease.2 This highlights the need for data not only regarding how AF affects patients but also on its consequences on partners and the couple’s relationship. Previous research concerning couples living with cardiac disease, such as coronary artery disease (CAD) and chronic heart failure (CHF), has shown overprotective behavior,24,25 communication deficiency,26,27 sexual concerns,28,29 and changes in domestic roles,25,29 although no studies have been identified that address the contextual perspective of couples living with AF. However, AF poses some differences related to CAD and CHF in the sense that patients may experience periods without symptomology, and there is difficulty in obtaining a diagnosis (eg, a patient may experience symptoms at home but upon visit to the emergency department, sinus rhythm is restored) and no obvious causes and/or explanations can be given for why the patient has AF.6 Considering this, research on couples living with AF should be done, as well as how they experience and deal with this on a daily basis.

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Aim

This study’s aim was to explore couples’ main concern when one of the spouses has AF and how they continually handle it within their partner relationship.

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Methodology

Classical grounded theory (GT) was deemed appropriate because it can be used to discover participants’ main concern and conceptualize patterns of human behavior.30 Accordingly, the research process in GT does not take its starting point in a predetermined and preconceived problem30; therefore, it is a suitable method when there is a scarcity of research. It is well suited for discovering couples’ main concern and then generating a theory accounting for the processing of the main concern.

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Sample and Setting

The study was carried out at a county hospital in the south of Sweden, in which 1 of the spouses was admitted to a medical emergency ward because of AF. Inclusion criteria for participating couples were the following: patient diagnosed with AF, both patient and partner 18 years or older, being engaged in a partner relationship, and both patient and partner willing to participate. Couples were excluded from participation if 1 of the spouses had a severe chronic illness that might have had an effect on the partner relationship and their daily life together, for example, CHF, mental illness, or dementia. Atrial fibrillation may be regarded in different aspects; a patient may have AF and no other comorbidities but also have other diseases commonly associated with AF, such as hypertension, diabetes, or CAD.8 However, data regarding comorbidities are unknown in the current sample. Eligible patients were approached by a study recruitment nurse, who provided oral and written information regarding the aim of the study, procedure for data collection, and voluntary participation, as well as the fact that they could, at any time, withdraw from participation without having to disclose a reason why. If patients gave consent to participate, partners were asked to participate and ultimately given the same information. If partners were unable to visit the unit, consent was obtained via telephone.

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Data Collection and Analysis

Data were gathered through interviews in Swedish with 12 couples (patient and partner together) and through follow-up interviews with 2 patients and 2 partners separately in the couples’ homes or in an office at the university. Interviews, lasting 20 to 55 minutes, were carried out between 2011 and 2012 and were recorded and transcribed verbatim by the first author (T.D.). Initial interviews focused on open-ended questions, such as “Can you tell me how you experience living with AF?” and “How has living with AF affected your partner relationship and daily life together?” To grasp the dynamics within the partner relationship, reflective follow-up questions30,31 were used, such as “How do you feel about what your spouse just said?” In accordance with GT that “all is data,”30(p8) field notes from nontranscribed data, such as conversations that took place before and after the transcribed interview, were subsequently incorporated, analyzed, and added to the interview data. Within GT, data collection and analysis are not performed separately, rather they occur simultaneously, with theoretical sampling functioning as a guide for what data to collect next.30 After each interview, the transcribed data and field notes were analyzed and coded. Through open coding, which is the foundation of category generation, questions were asked regarding the data: “What are these data a study of?” “What category do these data implicate?” “What is actually happening in the data?” “What is the main concern for the couples?” “What accounts for the continual resolving of this concern?”31,32 Open coding directs and guides theoretical sampling and is necessary to maintain theoretical sensitivity when analyzing, collecting, and coding the data.30 Following theoretical sampling, additional data collection was done through individual follow-up interviews. Throughout the study, questions were developed based on the ongoing analysis, such as “How do you share concerns and uncertainty about AF with each other?” The codes were analyzed, and similar meanings in the codes were grouped into categories. Codes and categories were constantly compared with newly generated codes and categories throughout the course of the study. During this process, the main concern and core category emerged. The core category explains how the main concern was continually resolved.32 After this, selective coding was initiated, in which data collection and coding were delimited to categories related to the core category, that is, interviews focused on managing uncertainty through explicit and implicit sharing. Saturation was reached when the most recent collected data did not contribute further to the generation process. During the entire analytical process, memos were written in text and also in figures related to the categories. Writing memos is fundamental in GT and is the “theorizing write-up” of ideas and possible relationships between codes.31 Through theoretical coding, memos were hand-sorted, and relationships between categories and the core category emerged. Sorting of the memos is fundamental because it is a conceptual sorting where the integration of the theory emerges. Essentially, “theoretical codes implicitly conceptualize how the substantive codes will relate to each other as interrelated, multivariate hypotheses in accounting for resolving the main concern.”30(p163) In GT, there are several theoretical coding families, and during the analysis, typology emerged as the most suitable theoretical code. Thus, a theoretical model, in this case a typology, was used to explain the theory. Furthermore, in accordance with GT, a literature review was performed and added as another source of data to refine the theory.30

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Ethical Considerations

Participation in the study followed the principle of autonomy and was based on informed consent and couples’ willingness to participate.33,34 However, couples’ participation in the study was exclusively dependent on initial consent from the patient. Couples were free to decide the location for the interview. To avoid recruiting participants during critical events when their autonomy may be compromised,35 inclusion occurred upon patients’ discharge from the unit. Moreover, following the principle of beneficence, participants were informed and guaranteed that their participation was guarded by confidentiality, with research data safely stored and individual identities protected. Participants were also informed that their individual identities would be protected when research findings were reported. The study received ethical approval from the Regional Ethical Review Board, Linköping University, Sweden (reference no. M8-09), as well as written permission from hospital management.

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Results

Couples living with AF experience uncertainty as a common main concern (Table). This uncertainty is rooted in causation of AF and apprehension about AF episodes, with the former referring to the disease per se; that is, couples had a deficiency of knowledge regarding what AF is and/or what underlying factors contribute to the development of AF. Apprehension about AF episodes refers to the unpredictability of not knowing if, when, and why symptoms and/or AF episodes may occur. Upon coming home from the hospital, couples have little information about AF as a disease, including what actually causes it and why the patient has been afflicted. Couples sometimes consider previous illnesses, heredity, or lifestyle as possible explanations for AF.

TABLE C

TABLE C

Couple 6:

P [patient]: one may wonder what causes it…from the beginning…when you’ve never have had anything like this before.

S [spouse]: …and no one in your family suffers from it…

P: no…not a single one of them have suffered from a heart attack or anything…nothing…

After being diagnosed with AF, afflicted couples experience various dimensions of uncertainty related to AF episodes. Even though they sometimes have an idea about certain actions or behaviors that might initiate an AF episode, such as working with your hands over your head, couples experience uncertainty related to the unpredictability of AF episodes. Not knowing or being able to predict whether an AF episode might occur increases uncertainty in afflicted couples. Couples reveal that they experience uncertainty regarding traveling, both domestically and abroad. Essentially, this uncertainty is rooted in apprehension about AF episodes while being away from environments where they know how and where to acquire care if needed.

Couple 3:

P: it’s a worry…I think…not knowing how…or when you get it [an AF episode]…

S: it becomes… a sort of…a feeling of anxiety…

P: …you are worried that it might happen if you’re away…or if you’re planning to go away…or something…

The theory of Managing Uncertainty emerged in the analysis as the continual resolving of the main concern within the partner relationship, through the strategies of explicit sharing and implicit sharing.

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Managing Uncertainty

The main concern in the partner relationship for couples living with AF is uncertainty. Afflicted couples manage uncertainty through either explicit sharing of concerns related to AF or implicit sharing, in which they choose not to explicitly talk about uncertainty with each other (Figure).

FIGURE

FIGURE

Explicit sharing refers to couples engaging in mutual planning and agreement and adjustment of activities and partner support, which is captured in the strategy of mutual collaboration. The strategy of finding resemblance captures how couples reflect their uncertainty and dearth of knowledge toward others, such as friends or coworkers, who are afflicted with AF or other cardiac diseases. Implicit sharing includes the couples’ strategy of distancing from each other as a consequence of uncertainty. Partners feel left out from the disease, which exacerbates distress and worry, and is captured in the strategy of keeping distance. Couples’ experience of knowing each other well and not having to talk or share is captured in the strategy of tacit understanding. However, these strategies are not completely separate from each other, which is explained through the implication of time.

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Explicit Sharing

Explicit sharing adheres to the notion of couples sharing feelings and thoughts with each other related to AF, using verbal actions such as asking, telling, or discussing. Mutual collaboration and finding resemblance are strategies used by couples that constitute a direct interaction between the spouses. Therefore, sharing is expressed explicitly.

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Mutual Collaboration

Even though couples openly discuss AF-related concerns regarding traveling, both patients and partners still express uncertainty related to apprehension about AF episodes. They might be mentally prepared and practically informed but still experience a latent uncertainty—what if an AF episode occurs away from home? However, most couples have not directly refrained from traveling abroad, although they express a feeling of being more reluctant about traveling as AF episodes occur more frequently. Couples often meet this uncertainty with sharing and discussion to plan and arrange a trip. Often, they have informed themselves regarding local surrounding hospitals and medical centers if a need for care should become necessary. This planning is not seen as stressful or restrictive, but rather as an adjustment to their life situation and a way to manage their uncertainty. When an AF episode occurs, partners often participate in the decision about seeking acute medical treatment. When couples mutually agree to seek acute medical treatment, being at the hospital during an acute phase provides a feeling of calmness and understanding. Likewise, the patient’s sharing of symptoms and making the partner aware of an ongoing AF episode enable the partner to adopt a supportive manner, for example, bringing medication and preparing meals.

Couple 8:

S: …I am more worried…and so are you…you don’t want to go away as much nowadays as we used to…you don’t want to be too far away from the hospital…

P: …well that might be so…because we have talked about going away a bit…towards the south and like that…and then you would want to find out what it is like there [availability of healthcare facilities].

Adjustment of joint activities, such as walking and traveling, is not seen as problematic per se to relationships. Instead, it shows that relationships are nonstatic, and changes and adjustments within relationships do occur as time progresses. Even though couples are open toward each other and share emotions during ongoing AF episodes, partners still experience more uncertainty than the patient does. This is regardless of mutual collaboration and points toward the difficulty of actually managing uncertainty related to AF within the partner relationship.

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Finding Resemblance

Given the difficulty of relating to the disease, couples may tend to “talk around” AF and reflect their thoughts and uncertainty onto others, such as friends or coworkers, who have AF or other cardiac diseases. This is not to be seen as denying being ill, rather it is a strategy to manage the uncertainty related to couples’ lack of information about AF and the unpredictability, and hence apprehension, related to AF episodes. Regarding traveling, couples direct their uncertainty that something may occur during a flight to other people with cardiac disease who still are able to travel and toward previous flight experiences where people may have had a myocardial infarction, dyspnea, or sudden hypotension.

Couple 6:

S: [on the topic of traveling]…the question is whether they let you on [board the flight]…when you got this…

P: of course they do…you can fly if you got a pacemaker…

S: yes… but a pacemaker is a different thing…

P: well…my father went to Spain on holiday…and he had suffered a few heart attacks…so it’s probably no…[problem]…

Another aspect of finding resemblance involves couples longing for “getting well” or “getting treated” for AF, as they try to make sense of treatment options. Because they experience a dearth of knowledge and discrepant information from medical professionals regarding treatment options, their desire to become well serves as a grounded uncertainty. This uncertainty is exacerbated by seeing others who have been successfully treated with catheter ablation or cardioversion. They search for reasons why they have not been offered alternative treatment options or why they have not been successfully treated through current treatment strategies. These experiences do not necessarily lead to avoidance of traveling, rather finding resemblance is a means of trying to normalize and make their situation comprehendible. However, it points to couples’ difficulty actually relating to AF as a disease, both conceptualizing causation of AF and apprehension about AF episodes. This is not seen as problematic within the partner relationship, and couples use this strategy to deal with the uncertainty. It is a collective management in which couples reflect and manage their uncertainty through others.

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Implicit Sharing

Implicit sharing adheres to the notion of couples not explicitly sharing feelings and thoughts with each other related to AF. Keeping distance and tacit understanding are strategies used by couples and involve indirect interactions between the spouses, in which sharing is expressed implicitly.

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Keeping Distance

Couples use an implicit sharing strategy in which they tend to distance themselves from each other. Patients do not wish to worry or distress their partner. They believe their partner is already worried and should not be further distressed. On the other hand, partners believe that asking and sharing may come across as nagging and overprotection. As couples neglect to openly share thoughts and concerns related to AF, partners tend to feel excluded and experience enhanced distress as patients engage in activities that partners believe may cause an AF episode.

Couple 7:

S: …I can sometimes think…when he’s been gone for a good while [out and running]…not knowing where he is…

P: …I generally don’t say where I’m going…it’s not always you decide in advance where you’re going to run…

S: …I like to know where he is going…when he is going away…

P: but…I have never become…or…collapsed…or anything…or been tired…or…even since I got this [atrial fibrillation]…

Partners do not want to be overprotective toward the patient and thereby choose not to nag and query the patient about thoughts and feelings related to AF. They derive this manner from previous illness experiences and overprotective behavior, such as having a father with cardiac disease and an overprotective mother. Because both patients and partners silently believe that asking about and sharing emotions and feelings related to AF cause additional and enhanced distress in the other spouse, they tend to distance themselves and refrain from an explicit sharing of AF-related issues. However, the consequence of this is that it leaves partners with a feeling of being “left out,” which ultimately increases emotional distress. Moreover, partners sometimes feel that their explicit sharing, such as asking the patient to be calm and careful while performing physical activities, is met by negligence in the patient. This causes partners to move toward an implicit sharing process, in which their uncertainty is reinforced, and they tend to feel distanced and “left out” from the disease.

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Tacit Understanding

Embedded in the strategy of tacit understanding is the notion that couples have a need for not having to talk about all things. There are comprehension and understanding between each other rooted in having shared many years of life together. This implies that couples may use implicit sharing, in which they sense each other’s feelings and concerns, and do not need to explicitly share with each other to manage their uncertainty. On the other hand, some couples have a jointly adopted belief that it is unhealthy to dwell on and think too much about the disease. This, however, does not imply that couples neglect the disease or each other. Rather, they are aware and can sense each other’s feelings and concerns and thereby are able to sense how the other spouse feels, both good and bad.

Couple 5:

S: …but that is how a relationship can be too…you don’t have to talk that much…we know each other so well…that sometimes…we can think of the same thing…

P: yes…you almost know exactly what the other is thinking about…

Couples express an overall difficulty in relating to AF and a comprehension of AF as a nonfatal cardiac disease, which is derived from their experiences with relatives, friends, and neighbors with AF and serves as a ground for tacit understanding within their partner relationship regarding living with AF. One may still be able to work, maintain an active social life, and be physically active even though afflicted with AF. Furthermore, patients are rarely put on sick leave after AF, which may also contribute to calmness in the partner relationship. However, partners do express a sense of calm when patients give up certain activities that may involve an increased heart rate, such as hunting or running. Even though patients may have decided this by themselves, and not in collaboration with their partner, the strategy of tacit understanding mitigates uncertainty.

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Implication of Time

Couples with AF may drift between the sharing strategies. This is not necessarily done intentionally. Rather, couples tend to move toward implicit sharing as more time elapses from an AF episode or if explicit sharing is not reciprocated by the other spouse. Upon coming home from the first hospitalization due to AF, couples express more uncertainty and experience more shifts in domestic roles and household duties. However, a move back toward pre-AF patterns emerges, and as episodes appear less frequent, couples think about and discuss AF less. Therefore, a tacit understanding related to AF is used.

Couple 14:

P: the first time [first AF episode] you didn’t know what it was…then you become more familiar with it…the last time it happened wasn’t too peculiar…

S: yes…I guess you can say that…now we just go in [to the hospital] to restart him…[cardioversion]…so…so I am perhaps not as worried anymore…as I was in the beginning….

Relationships are nonstatic, meaning that they change over time. Couples with AF are no different, with possible shifts between sharing strategies being a sign of a “normal” functioning relationship. The underlying reasons for couples using different strategies from time to time are imbedded in the notions of elapsed time between AF episodes, time since being afflicted/diagnosed, and previous relationship roles. Couples in which the patient previously had a more dominant role tend to use implicit rather than explicit sharing. This represents a limit in the time parameter, suggesting that these couples are more reluctant to shift between the strategies.

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Discussion

This GT study found that a main common concern of couples living with AF is uncertainty rooted in causation of AF and apprehension about AF episodes. Managing uncertainty emerged as an overall strategy within the partner relationship, with couples using either explicit or implicit sharing strategies. The use of either type of strategy is not necessarily based on premeditative grounds but rather on elapsed time between AF episodes, time since diagnosis, or possible neglect of sharing between spouses. Thus, it should be emphasized that uncertainty does not reflect the couples’ entire daily living.36 Uncertainty is 1 of many patterns of behavior experienced by couples living with AF.

Uncertainty, in general, exists when situations are ambiguous, complex, or unpredictable or when knowledge or information is unavailable or scarce.37,38 In chronic illness, uncertainty exists because of factors such as unpredictable symptoms, persistent questions about reoccurrence or aggravation of illness, and an unknown future.39 Within Mishel’s model of uncertainty in chronic illness, focus is on the integration of continual uncertainty into one’s life and one’s life view. A fundamental aspect of couplesuncertainty is their difficulty in relating to AF; not knowing what AF is and/or what underlying factors contribute to the development of AF; and the unpredictability of not knowing if, when, and why symptoms and/or AF episodes may occur. This lends support to Mishel’s models of uncertainty in illness38 and uncertainty in chronic illness.39 A recent study on AF patients’ illness perception40 supports the finding that lower illness coherence (perceived understanding of AF and ability to make sense of it) is related to enhanced uncertainty (psychological distress). The findings are also consistent with the limited number of qualitative studies of patients living with AF6,7 and supraventricular tachycardia,41 which also found that uncertainty is related to lack of information about causes and unpredictability of symptoms and episodes. Uncertainty has also been described in quantitative studies on patients living with AF, focusing on symptom severity13,42 and knowledge of AF.43 Even though these studies are from a patient perspective, a recent study1 found that the perceived impact of AF in daily life is similar in patients and partners.

Uncertainty may consequently be viewed as a stressor within the partner relationship that couples need to manage. Stress may be conceptualized as a stimulus that triggers psychological reactions such as anxiety or uncertainty.44 Couples’ stress is considered a dyadic phenomenon in which stress arises from a stressful event or encounter that concerns both partners and in turn elicits joint appraisal. Dyadic coping following joint appraisal is a cooperative use of common resources,44 which, in this study, is conceptualized through the strategies of explicit and implicit sharing. Accordingly, dyadic coping has been described as including daily communication, interpersonal conflict, joint problem solving, giving and receiving emotional support, and dealing with life stressors as a couple rather than as individuals.44 The dyadic strategies used for managing uncertainty are aimed at accommodating or altering emotions and accomplishing or avoiding decision making.45 Consistent with views of communal coping, uncertainty is viewed as “our” problem rather than “my” or “your” problem.46

This study revealed 4 dyadic strategies. Mutual collaboration shares similarities with active engagement in that dyads explicitly share thoughts and emotions as well as initiate problem solving.47 Finding resemblance shares similarities with movement to acceptance, which previously has been described as a management strategy in chronic illness.48 Comparing oneself with others, such as other couples, friends, neighbors, or colleagues with AF or other cardiac diseases, may facilitate acclimatizing and normalizing of the situation. Previous studies on couples living with a cardiac disease report that they strive for normality, longing for an everyday life and being able to do ordinary things.25,27 Finding resemblance mitigates couples’ decisions about traveling and participating in physical activities. Keeping distance, expressed through nonsharing of uncertainty related to AF, encompasses avoidance and hiding of one’s concerns and uncertainty, similar to protective buffering47 and pulling away.49 Even though these strategies are on a dyad level, the theory suggests that keeping distance enhances partner uncertainty and distress, consistent with the early studies of Coyne and Smith.47,50 Tacit understanding is a dyadic strategy that is not directly explained by traditional coping strategies. Rather, it can be explained as the unique relational adjustment that individuals in a dyad make to each other18 after knowing each other well after several years together. In addition, tacit understanding may be explained through the implication of time, in which couples’ perception of absence of AF symptomology as a stress stimulus44; that is, with more time between AF episodes and prolonged duration since being diagnosed, couples may not have a need to explicitly share. A chronic illness always affects the partner relationship in some way, although this varies depending on the psychosocial effects of the condition. A more constant symptomology, such as a spinal cord injury, always impinges on the relationship, whereas a relapsing condition, such as AF or a disc disease, impinges intermittently.49 A study on patients with an ICD for malignant arrhythmia found that those who received ICD shocks during a 1-year follow-up experienced more anxiousness and psychological distress than did those who did not receive a shock during the same time period.51 This lends support to the fact that as time being symptom-free increases, couples experience less of a need to explicitly share, thereby causing a shift toward implicit sharing through tacit understanding. Therefore, adjustment and management strategies are dependent on time, based on elapsed time between AF episodes and length of time since being diagnosed. Another possible aspect of couples’ tacit understanding is found in the clinical observations made by McCabe et al,6 suggesting that clinicians do not view AF as a complex cardiac condition that adversely affects QoL. Consequently, clinicians may minimize the implications of AF and therefore fail to provide enough support and information. On the other hand, such behavior may also contribute to couples’ tacit understanding, with clinicians’ “calm” and “nonstressed behavior” contributing to calmness in couples.

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Methodological Considerations

Because GT was used in this study to discover participants’ main concern and conceptualize patterns of human behavior, it was deemed a necessity to interview couples together rather than separately. The theory constitutes couples’ strategies, not individual strategies. However, interviewing couples together, rather than patients and partners separately, may encourage participants to give answers that are perceived to be acceptable to the other spouse.52 Qualitative observations of couples living with CHF revealed that partners may admit to experiencing distress as “I’m having trouble, but we’re fine,”53(p10) which implies the partners’ respect for the vital role they play in helping the patient deal with the illness. Therefore, one needs to be sensitive to interpretations and comparisons in the light of similar studies conducted from a patient or partner perspective. A final precaution should be noted regarding the fact that participation in the study relied on patients’ initial consent. It is possible that couples with low marital satisfaction (perceived from the patient’s perspective) declined participation. This suggests a bias toward couples with high marital satisfaction.

According to Glaser,30 a GT can never be considered right or wrong, it can only be judged by its fit, relevance, workability, and modifiability. Fit means that the categories must fit the data; that is, data should not be forced or selected to fit preconceived or preexistent categories. Through constant comparison, codes and categories are constantly compared with newly generated codes and concepts throughout the course of the study. Relevance means that the emerged categories are related to and deal with the participants’ real concern; that is, the categories must be relevant to the main concern. Workability implies that the theory explains how the main concern is resolved. Modifiability involves comparing new data with the existing data, thus enabling modification of the theory. The literature review in this study served as a contribution to the theory’s relevance, workability, and modifiability. In addition, presenting the categories to patients and healthcare professionals at an open seminar on cardiac arrhythmia gave support to the theory’s fit, relevance, and workability. Because GT is abstract in regard to time, place, and people,30,31 the theory of Managing Uncertainty may contribute to understanding couples living with other chronic diseases with unpredictable symptomology and reoccurrence. However, further research is required to make the theory applicable to other chronic diseases.

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What’s New and Important

  • Couples experience uncertainty related to not knowing what AF is or what underlying factors contribute to the development of AF. Thus, spouses should preferably be a part of the recovery process, both at the initial stage at discharge and during follow-up appointments.
  • Clinicians operating at in-hospital settings should encourage spouses to participate in discharge calls, and clinicians in a primary care setting should encourage spouses to participate at follow-up meetings.
  • Even though no overt reduction in uncertainty may be related to any strategy used by the couples, self-management recommendations point toward the explicit sharing strategies of mutual collaboration and finding resemblance.
  • Healthcare personnel should acknowledge the knowledge deficit that couples have regarding AF as a disease. However, couples may differ in their educational needs based on time since diagnosis, previous illness experience, and previous contacts with healthcare institutions. Therefore, information and education have to be individualized and accustomed to fit couples’ needs.
  • Future studies should focus on howpatients and partners affect each other in terms of health and relationship satisfaction. Interventional studies should focus on the couple in the recovery process, not merely on the patient or the partner, but on the dyad as a unit. Couple needs and expectations in their encounter with healthcare personnel and institutions need to be explored to create family-centered interventions.
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Conclusion

Atrial fibrillation affects the partner relationship by bringing uncertainty into the couple’s daily life. Even though this study shares similarities with previous studies on couples living with chronic disease, it contributes to the existing knowledge by presenting a set of strategies used by couples to manage uncertainty when living with AF. Time since diagnosis and elapsed time being symptom-free seem to work as a mitigating factor for tacit understanding in afflicted couples. On the other hand, frequent AF episodes cause couples to use explicit sharing through collaborative strategies. It should be emphasized that neither type of strategy fully eliminates couples’ feelings of uncertainty.

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Acknowledgments

The authors are grateful to Maria Koldestam, MSc, RN; Kerstin Blanck, RN; Britt-Inger Linnér, RN; and Birgitta Hjortsjö, RN, for assistance with recruiting participants.

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Keywords:

atrial fibrillation; couples; grounded theory; qualitative research; uncertainty

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