Patients' Experiences and Unmet Needs in Atrial Fibrillation: Implications for Person‐Centred Care

ABSTRACT

Background

Atrial fibrillation is a common cardiac arrhythmia that significantly impacts patients' daily lives. While clinical management is well established, and despite growing interest in patient‐centred care, the perception and emotional response of patients with AF remain less explored.

Objective

This study aimed to explore the experiences and perceived needs of patients with atrial fibrillation.

Methods

A qualitative descriptive design was employed. Twenty adult patients diagnosed with AF and no cognitive impairment were recruited from a public hospital in northern Portugal. Semi‐structured interviews were conducted, audio‐recorded, transcribed verbatim and analysed using thematic content analysis supported by NVivo software. Themes were developed inductively and refined through iterative coding and discussion.

Results

Five main themes were identified: (1) Dealing with a New Normal; (2) Embracing the Illness Journey; (3) Walking the Illness Journey; (4) Unmet Healthcare Needs, and (5) Improving Supportive Services.

Conclusion

Patients with atrial fibrillation face challenges that extend beyond symptom management. Findings underscore the importance of integrated, theory‐informed, patient‐centred approaches to support individuals living with atrial fibrillation across diverse contexts.

1. Introduction

Atrial fibrillation (AF) is the most prevalent sustained cardiac arrhythmia, affecting over 33 million people globally, with incidence expected to rise with population aging [1, 2, 3]. Clinically, AF is associated with an elevated risk of stroke, heart failure and mortality [3], as well as significant demands on healthcare systems [4]. Beyond physiological risks, AF disrupts patients' psychological and social well‐being, affecting their daily lives and emotional adjustment [5, 6].

Although treatments such as pharmacotherapy and catheter ablation improve clinical outcomes [7, 8], they often fail to address patients’ experiences, an increasingly recognised priority in patient‐centred care [5]. Patients frequently report psychological distress [9, 10], uncertainty [11] and social withdrawal [12], largely driven by symptom unpredictability, long‐term anticoagulation and fear of stroke [13, 14, 15]. These experiences compromise quality of life (QoL) and challenge adherence, reinforcing the need for models that integrate psychosocial realities into care [5].

To address the multi‐level challenges, the AF‐CARE framework [3], recommended by the 2024 ESC guidelines, proposes integrated, person‐centred care across four domains: (C) Comorbidity management, (A) Anticoagulation, (R) Rate/rhythm and symptom control and (E) Continual evaluation of needs [3]. In comorbidity management, clinicians systematically identify and treat factors that amplify AF burden (e.g., hypertension, heart failure, obesity, diabetes), alongside lifestyle risk modification and rehabilitation. Anticoagulation covers stroke prevention through shared assessment of thromboembolic and bleeding risks, informed choice of oral anticoagulants, safety education and adherence support. Rate/rhythm and symptom management prioritise relief from palpitations, fatigue and functional limitation through rate control, rhythm control (including cardioversion/ablation), and supportive self‐management tailored to the patient's priorities. Assessment includes a structured and periodic review of patient‐reported outcomes, information needs and psychosocial support, ensuring continuity across settings, family and carer involvement and adjustment of care plans [3].

This model supports care continuity, interdisciplinary coordination and shared decision‐making. However, operationalising such a model requires a deeper understanding of patients’ experiences across these domains [16].

While qualitative research has begun to examine how individuals interpret AF [5, 13, 14], existing studies often focus on isolated aspects (e.g., symptoms or medication) and are predominantly situated in Northern/Central Europe or Asia. Few offer a holistic view of the emotional, structural and relational dimensions of living with AF. Moreover, little is known about older adults’ experiences, a group disproportionately affected by AF, particularly in Southern Europe, where healthcare access varies widely [17, 18, 19].

In Portugal, where the ageing population is rapidly growing, and AF prevalence is rising [19, 20], qualitative studies grounded in patients’ perspectives are virtually absent. To date, no published studies have examined how Portuguese patients understand, adapt to, and navigate AF across diagnosis, treatment (rate/rhythm control and anticoagulation) and longitudinal follow‐up. Addressing this gap is essential to developing age‐sensitive, culturally relevant and context‐specific care strategies.

This study seeks to explore the experiences and perceived needs of patients with AF, using a qualitative descriptive design grounded in inductive thematic content analysis. The AF‐CARE framework [3] was used as a practice‐oriented lens to structure the discussion of implications for clinical care. Such alignment allows linking the challenges reported by patients to system‐level priorities in AF care, such as symptom management, anticoagulation safety and ongoing assessment [3], without compromising the inductive nature of the findings. By prioritising patient narratives and integrating a person‐centred lens, this study contributes innovative evidence to improve AF care delivery in real‐world settings.

2. Methods

2.1. Participants and Procedure

Participants were purposively recruited from an anticoagulation outpatient clinic in northern Portugal that provides long‐term follow‐up for patients with AF on oral anticoagulation (vitamin K antagonists and direct oral anticoagulants). Inclusion criteria included: (a) confirmed diagnosis of AF and current oral anticoagulation; (b) age ≥ 18 years, and (c) absence of cognitive impairment assessed with the Montreal Cognitive Assessment (MoCA) [21]. Exclusion criteria included severe psychiatric or neurological conditions.

Since the goal of the present study was to explore different disease trajectories, there were no restrictions on the years since diagnosis or type of treatment (vitamin K antagonists or direct oral anticoagulants).

All participants gave written informed consent. The study was approved by both the hospital and university ethics committees and was conducted in accordance with the Declaration of Helsinki. Participants were approached during routine consultations. After providing verbal and written explanations, interviews were conducted by the first author in a private room, lasting 30–40 min, and were audio‐recorded. Interviews were transcribed verbatim and anonymised. Data collection continued until no new sub‐themes emerged, with saturation reached at the 20th participant.

2.2. Measures

Sociodemographic and clinical data (e.g., age, sex, marital status, education, treatment history) were collected using a questionnaire developed for the purposes of this study. Cognitive functioning was assessed using the Portuguese MoCA version [22], which demonstrated excellent internal consistency in this sample (α = 0.890).

2.3. Interview Guide

The interview guide was developed based on literature on AF experiences [5, 13, 14], qualitative studies on chronic illness adaptation [23], and informed by patient‐centred care principles [24] and the AF‐CARE framework [3]. Questions addressed emotional adaptation, lifestyle changes, support systems, access to care, and suggestions for service improvement (Table 1). One clinical expert and one qualitative researcher reviewed the guide for relevance and clarity.

TABLE 1.

Structured interview.

What does AF mean to you?

2What was your experience like when you were diagnosed with AF?

3How do you cope with disease and treatment?

4Tell us about the impact of illness and treatmen: on a personal, family and professional levels?

5What is most difficult for you with this illness?

6How satisfied are you with the treatment you receive in the hospital?

7Tell us about your accessibility to the hospital for treatment?

8What do you think the hospital can offer AF patients?

2.4. Data Analysis

This qualitative descriptive study followed a post‐positivist paradigm [25]. Thematic content analysis was conducted using Bardin's [26] three‐phase framework: pre‐analysis, data exploration and treatment of results. Interviews were coded inductively in NVivo 10. Excerpts were grouped into sub‐themes and then broader themes, capturing the complexity of participants’ narratives. To preserve the temporal and experiential richness of participants’ narratives, themes were organised as a layered sequential logic. The aim was to capture how patients' understanding of the disease progressed over time. The thematic development reflected this trajectory, beginning with the initial disruption and evolving through adaptation and engagement with the healthcare system. This layered approach mirrors the lived chronology of chronic illness, helping to clarify thematic overlaps without redundancy.

Two researchers independently coded a subset of transcripts, and discrepancies were discussed until a consensus was reached. Inter‐rater reliability was high (Cohen's Kappa = 0.81) [27]. The analysis was interpretative, aiming to reveal patterns, emotional content and meaning‐making processes. The final themes reflect both shared and divergent experiences of living with AF.

3. Results

3.1. Participants Characteristics

Twenty patients with AF participated in this study, averaging 78.65 years (SD = 8.90). The characterisation of the sample is presented in Table 2.

TABLE 2.

Patients' sociodemographic and clinical characteristics.

Characteristics	N (%)	M (SD)	Range
Age (years)	20	78.65 (8.90)	52–91
Sex
Male	11 (55)
Female	9 (45)
Residential area
Urban	13 (65)
Rural	7 (35)
Marital status
Single	1 (5)
Married	13 (65)
Divorced	2 (10)
Widowed	4 (20)
Education
With higher education	5 (25)
Without higher education	15 (75)
Employment status
Retired	19 (95)
On leave	1 (5)
Years of diagnosis	20	19.05 (13.15)	1–46
Medication
AVK	12 (60)
NOAC	8 (40)

Note: Higher education—tertiary degree (University); AVK—vitamin K antagonista; NOAC—non‐vitamin K antagonista (also known as direct oral anticoagulants, DOACs).

3.2. Themes

The participants’ narratives unfolded in a temporal sequence, progressing from the initial disruption caused by the diagnosis to a gradual adaptation and ongoing interaction with the healthcare system. Accordingly, the themes are presented in a layered structure that reflects this experiential progression. Five themes emerged from the data, each with multiple subthemes: (1) Dealing with a New Normal; (2) Embracing the Illness Journey; (3) Walking the Illness Journey; (4) Unmet Healthcare Needs and (5) Improving Supportive Services. These themes offer a comprehensive view of patients’ experiences with AF, highlighting their emotional, social and healthcare‐related needs (Table 3).

TABLE 3.

Themes, sub‐themes and sub‐themes definitions.

Themes/Definitions	Sub‐themes (n, %)	Sub‐theme definitions
Dealing with a new normal How patients reorganise their daily lives after an AF diagnosis, balancing symptoms, treatment and emotional responses.	The shock of the diagnosis & illness appraisal (17, 85)	The immediate affective reaction and the initial cognitive appraisal of AF and its consequences at or shortly after the disclosure of the diagnosis
	Impact on daily life (18, 90)	Observable disruptions in functions, routines, and activities, and practical ‘therapeutic work’ integrated into daily life
	Negative emotions and avoidance (18, 90)	Ongoing emotional states linked to living with AF and behavioural avoidance
Embracing the illness journey How patients gradually adjust to AF over time and integrate it into their lives, beyond day‐to‐day behavioural changes.	Adaptation to change (14, 70)	Adjustments over time, including the reorganisation of roles and expectations to live well with AF, emphasise trajectories and turning points rather than isolated behaviours
	Positive mindset (4, 20)	Attempts to maintain a hopeful or optimistic attitude toward AF include focusing on the present, valuing everyday life more, and describing the diagnosis as a turning point for appreciating what truly matters
	Perceived impact (9, 45)	Patients' assessment of the consequences of AF and what the condition ‘means’ for their lives, analytically distinct from the concrete effects on daily life
Walking illness journey How relationships with family and healthcare professionals shape the ability to cope with the disease, confidence and continuity over time.	Family support (14, 70)	Instrumental and emotional support provided by family members/caregivers that facilitates coping and adherence daily
	Emotional impact on family (15, 75)	Side effects of AF on the well‐being of family members (concern, stress, tension), with bidirectional influences on patients' emotions and decisions
	Medical support (16, 80)	Perception of the availability, clarity, and responsiveness of healthcare professionals (nurses and doctors): information, reassurance, and shared decision‐making (as distinct from structural issues of access)
Unmet healthcare needs Differences between what patients report they need, and what services currently offer.	Availability of medical care (10, 50)	Whether adequate services exist and can be obtained when needed (e.g., ability to make appointments, waiting times for patients to be seen)
	Accessibility to services (10, 50)	Difficulties in accessing available care, considering geographical and logistical barriers (e.g., transportation/parking), and related costs that the patient must pay
Improving supportive services Changes that patients believe are necessary to feel safer, better informed and more continuously supported by healthcare services.	Necessity for better informational support (15, 75)	Desire for clear, accessible, and ongoing information about AF, treatment, and self‐management, including a place or channel to ask questions
	Ongoing support and monitoring (17, 85)	Desire for structured and predictable monitoring, symptom/anticoagulation checks, and timely feedback that provides reassurance and guidance [as opposed to barriers to access (transport/costs and timely provision of information)]

3.3. Theme 1: Dealing With a New Normal

This theme comprises five sub‐themes: (a) The Shock of the Diagnosis and Illness Appraisal, (b) Impact on daily life, (c) Adjustment to treatment, (d) Illness perception and (e) Negative emotions and avoidance.

3.3.1. The Shock of the Diagnosis and Illness Appraisal

Diagnosis shock emerged as a recurrent theme, quickly followed by an initial appraisal of AF and its consequences. In this study, the sudden awareness of a potentially life‐threatening condition caused fear, denial and self‐blame. Patients described a process of adapting to a new reality imposed by their illness. The shock of receiving an unexpected diagnosis of a chronic cardiac condition emerged as a recurrent theme in the data. As one participant stated, ‘The initial diagnosis took me by surprise’ (P6). Some were asymptomatic and learned of the condition only during unrelated hospitalisations: ‘I didn't even know I had the disease; it was only when I was hospitalised for another reason that they found out’ (P10). The realisation of living with a heart condition was often perceived as distressing: ‘Suddenly knowing I had a heart condition was a shock’ (P4).

Patients recalled questioning why they developed AF: ‘Why did I have to have this?’ (P2). Some expressed self‐blame and regret: ‘I blamed myself’ (P3) and ‘I was always left with the feeling that perhaps I could have gone to the doctor earlier and prevented such a big progression and not had to go through so much suffering at the beginning, with a lot of tiredness, a lot of discomfort’ (P2). The fear of potential complications underscored the emotional impact: ‘It was very, very scary’ (P12).

Some participants reported a sense of control: ‘I realised that the disease, despite being chronic, is a disease that can be controlled’ (P13). Others saw it as serious: ‘I realised that it could be serious’, (P16) and dangerous: ‘I have a disease here in this machine and it's dangerous’ (P15).

3.3.2. Impact on Daily Life

Participants reported physical symptoms including palpitations, fatigue and dizziness. Examples included: ‘My heart beats too fast’ (P2); ‘I feel tired without doing anything’ (P10); ‘Sometimes I see everything black, and my head spins’ (P1). These symptoms disrupted routine activities: ‘I can't do anything. My head is spinning, and I have to lean back’ (P3). Many expressed reduced autonomy, stating, ‘I'm very limited in what I do, in my day‐to‐day life’, (P14), and reported restrictions in their social lives, such as, ‘I can't go anywhere’ (P18). Even basic household tasks became difficult: ‘I can't do anything at home’ (P8) and ‘Sometimes at home, I can't do things, I couldn't even make the bed’ (P10). The fact that they often did not know when the symptoms would occur influenced the planning and pace of activities: ‘sometimes, not knowing when it will strike, is the worst’ (P9).

Participants made adjustments to their daily routines to manage symptoms and treatment demands: ‘I walk little for fear of getting tired’ (P7). This led to decreased QoL for some: ‘I have no quality of life’ (P20).

Patients also highlighted external burdens, especially financial costs, and logistics of frequent appointments, which they experienced as stressful: ‘It's a lot of money to come here every week’ (P15). For some, the illness also affected their job: ‘I had to stop working, my husband worked for both of us’ (P18) and ‘In the early days, I couldn't do it. We lost a lot’ (P17).

While some patients experienced a significant impact on their lives: ‘It meant a change in my life, I've never been the same’ (P14), and ‘It really affects my life’ (P18), others reported a more manageable experience: ‘AF doesn't limit me in my daily activities. I'm grateful to be able to enjoy life without too many restrictions… I can do anything’ (P6).

Treatment adherence was seen as demanding. Medication routines were viewed as lifelong and tiring: ‘I have to take medication every day, forever’ (P19). Dietary adjustments were also mentioned: ‘I'm careful with my diet and I always take my medication and go for blood tests when the doctor appoints them’ (P3). The early stage of diagnosis was described as overwhelming in terms of treatment: ‘You have to do what you have to do, take your medication, follow your diet, keep a close eye on everything…change everything’ (P16). Some feared the consequences of nonadherence: ‘I have to do the right things and take the right medicines so that the blood is good, and nothing happens’ (P15). The frequency of medical appointments was also burdensome: ‘Having to come here almost every week is a prison’ (P2). As one participant summarised, ‘Sometimes it's not easy, you have to have a lot of strength to live with it’ (P4).

3.3.3. Negative Emotions and Avoidance

Participants associated AF with negative emotions. Commonly expressed feelings included fear: ‘I'm always very scared’ (P11), sadness: ‘I feel very sad’ (P3), and uncertainty: ‘You never know what might happen’ (P15). Some participants also avoided discussing the condition: ‘I don't like talking about it’ (P7).

3.4. Theme 2. Embracing the Illness Journey

Within this theme, three sub‐themes were identified: (a) Adaptation to change, (b) Positive mindset and (c) Perceived impact.

3.4.1. Adaptation to Change

Patients shared how they gradually adapted to the reality of AF, incorporating it into their lives. Acceptance was described as a process: ‘Over the years, I've learned to accept that this is reality and I have to take care of my health’ (P5). Others recalled early difficulties: ‘I handle it well; it's been many years, in the beginning, it was worse’ (P1). For some, AF became a part of daily life: ‘It's like another disease, I'm used to it’ (P17). Participants framed their acceptance as pragmatic: ‘Life is moving forward and we have to know how to deal with it and live with it’ (P4) and ‘It's not a death sentence right away, we have to take it easy…’ (P20). One patient emphasised autonomy: ‘Does not define who I am’ (P6).

3.4.2. Positive Mindset

Several participants described the importance of a positive mindset. For some, focusing on the present helped manage the emotional toll: ‘I'm a very positive person and I don't like to think about it. I like to live in the present’ (P6). Others described the diagnosis as a turning point for personal growth: ‘I think I value life more, the smallest things in life; I've learned to detach myself from external problems because I think our lives come first’ (P13).

3.4.3. Perceived Impact

Some participants reported that AF had a limited impact on their lives. One participant stated: ‘It has no impact, it hasn't changed anything’ (P7), while another emphasised ‘It didn't affect me much, I always tried not to let it affect me’ (P4). For others, the condition was seen as just another health problem among many others: ‘So this is just another experience, another illness. It hasn't changed my life or my way of thinking that much’ (P17).

3.5. Theme 3. Walking the Illness Journey

This theme identified three sub‐themes: (a) Family support, (b) Emotional impact on family and (c) Medical Support.

3.5.1. Family Support

Family and medical support were described as essential to managing AF. Patients consistently emphasised the role of family: ‘My wife and children are my support’ (P16). Family members provided emotional and logistical support: ‘They help me follow the treatment and what I need to do’ (P14) and ‘My family helps me, especially my niece, who always comes to my appointments’ (P2). Some participants relied on relatives for hospital visits: ‘It's my niece who brings me, I can't come alone’ (P7).

3.5.2. Emotional Impact on Family

Patients reflected on the emotional impact of their illness on their families. ‘They worry a lot about me and are always asking if I'm okay’, Participant 17 said. Participant 16 added: ‘I'm sorry it's affecting my wife so much’. Family members were also described as affected mentally and emotionally, with accounts of worry and strain: ‘It's difficult, they're always worried’ (P1), ‘My wife's stress. She's never been the same’ (P8), and ‘My husband suffers more than I do’ (P10).

3.5.3. Medical Support

Healthcare professionals were seen as central in the patients' journey. Participants described their doctors in highly positive terms: ‘My doctor is impeccable, always concerned, always welcomes me very well, talks to me. Impeccable’ (P6). Another shared: ‘My doctor can only do so much, and if she doesn't, it's because she can't. She's tireless, she talks to us, she doesn't send us away, and she wants to know if I'm okay’ (P12). Nurses were described as supportive and approachable: ‘The nurses are all very helpful’ (P4).

3.6. Theme 4. Unmet Healthcare Needs

This theme identified two sub‐themes: (a) Availability of Medical Care and (b) Accessibility to Services.

3.6.1. Availability of Medical Care

Several patients identified persistent barriers to accessing care. Delays were a frequent concern: ‘It's a shame we have to wait here for so long sometimes, it's very tiring’ (P10).

3.6.2. Accessibility to Services

Geographical and transportation barriers significantly impact patients' ability to engage with routine care, particularly in rural or low‐resource settings. Transportation difficulties were another major issue for these patients. For those living in rural areas, the trip to the hospital was exhausting and time‐consuming: ‘I come by bus, but it's hard because it's so far away. But I have to, I have to come very early’ (P15). Cost was also a factor: ‘I take the bus, it's always full of cars, and then if I don't have a bus, I have to pay for the car to bring me’ (P12). Even with public transport, access was often described as inadequate: ‘Coming here is bad. There are no conditions, so many people, so many cars, so much traffic, you see people there who spend endless time walking around… I came by public transport, but it's still terrible, terrible’ (P17).

3.7. Theme 5. Improving Supportive Services

This theme encompasses both the (a) Necessity for better informational support and (b) Ongoing support and monitoring.

3.7.1. Necessity for Better Informational Support

Clear, consistent and personalised information helps patients understand their condition and engage actively in care decisions.

Participants emphasised the importance of improved support services, especially in terms of information and access to care. They advocated for clearer and more consistent communication: ‘They should explain things better; if they don't have time, they should have someone to do it separately’ (P14). Patients expressed the need for a space dedicated to information and support: ‘A place where we could go talk or even get more information’ (P16) and ‘Or even so that family members can talk to someone’ (P19).

3.7.2. Ongoing Support and Monitoring

Participants asked for ongoing support and predictable follow‐up/monitoring to feel safer and better prepared. Patients expressed the need for more regular follow‐up: ‘We don't have anyone to help us when we're at our lowest, when we need it’ (P11) and ‘I'd like more monitoring, that's what I told you, more consultations to find out how we're doing, how the heart is. Not everyone can go to private consultations, and that would be very good, it would give people more rest’ (P4).

Suggestions extended to integrated care strategies: ‘I think if people have these heart problems, they need support, and I don't think the hospital provides that. We really need to have healthy habits, to eat well because of the blood, and some people don't know that’ (P6). Patients also spoke of economic and geographic challenges, suggesting transportation support: ‘More social support, even if it were a van to pick people up…’ (P15), and home visits: ‘The hospital could come and see us, we are isolated, very far away…’ (P3).

4. Discussion

This study offers an inductively derived understanding of how individuals with AF experience and adapt to the disease, highlighting the dynamic interplay between emotional, behavioural, relational and structural dimensions, as evident in the results. Although our analysis was not guided by a predefined theoretical model, the AF‐CARE framework was used post hoc as a clinical heuristic tool to frame the practical implications of the results. This approach ensured that recommendations remained grounded in the lived experiences of patients while being aligned with contemporary standards of AF‐integrated care.

Emotionally, patients reported fear, sadness and avoidance. Behaviourally, patients described adjustments such as slowing down and reducing activities. Interactions with family and clinicians influenced how confident patients felt and the choices they made regarding their care. Transportation costs, appointment scheduling and on‐site waiting times impacted access to and the quality of ongoing care. These patterns are consistent with prior qualitative studies that describe fear/uncertainty, daily‐life disruptions and service navigation in AF [13, 14]. The findings show how patients perceived and managed AF in their daily lives, highlighting the relationship between emotional adaptation, lifestyle limitations, support needs, broader care priorities, and psychosocial challenges.

An important feature of this sample is the long period since diagnosis, with patients living with AF for an average of 19.05 years. As a result, many narratives about diagnosis and the initial phase of adaptation are being reconstructed years or even decades after the diagnosis. Although such a process requires some caution regarding potential memory bias, the vivid and emotionally charged narratives suggest that what happens at the time of diagnosis leaves lasting marks on how patients understand and live with AF. The persistence of fear of stroke, uncertainty about symptoms, and restrictions on daily activities indicate that these challenges are not limited to the first few months or years after diagnosis. Instead, such challenges may become an integral part of the long‐term course of the disease, especially when structural barriers in the healthcare system, gaps in information, and limited psychosocial support are not adequately addressed.

The diagnosis of AF was often abrupt and emotionally destabilising. Many discovered the condition accidentally, triggering fear, guilt and existential vulnerability. These responses resonate with previous findings on the psychological impact of unexpected diagnoses [5, 13], with participants describing a rupture in their life narrative and identity, as they moved from seeing themselves as ‘healthy’ to living with a chronic heart condition. Similar diagnostic shock and early meaning‐making have been reported in qualitative AF studies that trace patients' journeys from first symptoms through confirmation and initial treatment [13, 14]. As patients attempted to adapt, they described multiple constraints on their daily lives. Symptoms such as fatigue, palpitations and dizziness significantly disrupted personal routines, limiting social engagement and undermining autonomy. The clinical situation was aggravated by the unpredictability of symptoms, which led many to avoid physical activity or social gatherings out of fear. The perception that AF could ‘strike at any time’, reinforced perceptions of AF as an unpredictable and often invisible burden. Recent qualitative work likewise highlights how symptom unpredictability fuels hypervigilance and activity restriction in everyday life [28]. These findings highlight the limitations of care models that focus solely on rhythm control or anticoagulation, without sufficiently addressing the broader impact of symptoms on patients' functioning and emotional well‐being. The unpredictable nature of AF has been consistently associated with heightened levels of anxiety, hypervigilance and social withdrawal, particularly when patients are uncertain about symptom triggers or the effectiveness of their treatment [10, 13]. As such, the psychological impact of uncertainty may equal or surpass the distress caused by the symptoms. Research suggests that patients who experience greater symptom unpredictability report lower QoL and poorer illness coherence, especially in the absence of supportive communication and shared decision‐making with healthcare providers [5, 11]. Similarly, a qualitative meta‐synthesis underscores that uncertainty is a central burden, a finding that leads to the recommendation of structured educational support and tailored information for its mitigation [5]. Within this context, the AF‐CARE framework's emphasis on continuous evaluation and person‐centred communication becomes especially relevant. A truly integrated model of care must consider symptom frequency and the patient's subjective experience of unpredictability. This aspect is often invisible in routine clinical assessments but has a profoundly impactful effect on daily life.

Treatment, while often viewed as necessary and effective, was also experienced as burdensome. The need for lifelong medication, dietary vigilance and frequent medical appointments placed participants in a state of continuous self‐monitoring and external control. Some compared their treatment routines to prison, pointing to a feeling of imprisonment rather than empowerment.

Despite these challenges, participants demonstrated significant capacity for adaptation. Over time, many developed routines to integrate the illness into daily life. Acceptance was not instantaneous; it often emerged gradually, through emotional work, support systems, and a reframing of expectations. Several individuals spoke of a renewed appreciation for life and an effort to focus on the present, describing the diagnosis as a turning point in their approach to valuing everyday experiences. These results align with previous studies that have emphasised the role of psychological resilience, cognitive reappraisal, and acceptance‐based strategies in improving quality of life and treatment adherence in AF and other chronic conditions [28, 29, 30, 31]. Within this perspective, integrated care models that explicitly include psychological support and patient education are particularly relevant, as they acknowledge that living with AF involves more than controlling heart rhythm and stroke risk [3]. Encouraging patients to live more intentionally, in the present moment, has also been linked to reductions in anxiety and fear of recurrence, particularly in older adults coping with chronic illness [5, 29]. In this context, the development of structured psychosocial support, whether through education, group interventions, or therapeutic counselling, represents a complement to clinical care and an essential dimension of person‐centred AF management [29, 30].

Family played a central role throughout the illness journey. Participants frequently cited emotional support, assistance with appointments, and practical caregiving as crucial for coping with the demands of atrial fibrillation. However, this support came at a cost. Several participants expressed concern for the emotional toll their illness had on spouses or children, noting that their suffering was mirrored, and sometimes magnified, by those closest to them. This aligns with evidence from other chronic conditions suggesting that family members often experience ‘second‐hand suffering’, manifesting as anxiety, caregiver strain and anticipatory grief [32, 33]. Such experiences are not limited to physical care; they encompass emotional labour, role shifts, and the disruption of family dynamics. In cardiovascular illness specifically, studies show that partners frequently exhibit levels of distress similar to or greater than those of patients themselves [34, 35].

These findings support a systemic view of chronic illness, in which the experience of disease is shared, negotiated, and at times, silently endured within the family unit, reshaping relationships and influencing the adaptation of both patient and caregiver. Recognising this bidirectional impact underscores the importance of involving families in care planning and providing them with targeted psychosocial support as part of integrated AF management. Interactions with healthcare providers were also decisive in shaping the patient experience. Participants consistently emphasised the value of relational aspects of care, particularly empathy, time during consultations and clear communication. These elements fostered a sense of trust and psychological safety, reinforcing adherence and enabling more open expression of needs. Prior research has shown that the quality of patient‐provider communication significantly influences patients' emotional adjustment and treatment engagement, especially in chronic conditions such as AF [36, 37]. Empathic interaction is not merely a soft skill; it has measurable effects on clinical outcomes and the perceived quality of care [38, 39, 40]. However, these positive interactions were not universal. Participants also described substantial barriers to accessing care, including long waiting times, difficulty securing appointments and lack of transportation, which are particularly pronounced among older adults and those living in rural areas. These structural inequities contributed to a pervasive sense of vulnerability. Such findings are echoed in the international literature, where difficulties in navigating the health system and discontinuity of care are repeatedly linked to lower treatment satisfaction and worse health outcomes [5]. The results reinforce the idea that living with AF is a matter of managing physiological risk and negotiating a healthcare environment shaped by geography, resources and policy [3]. Therefore, coordinated efforts between primary and specialised care are needed, guided by equity‐based models such as AF‐CARE.

The interpretation of the findings was informed by the AF‐CARE framework, which we employed as a practice‐oriented guide rather than a prescriptive analytic template. All themes were developed inductively, based solely on the interview data. Subsequently, the AF‐CARE framework served to both contextualise our findings within an integrated AF care perspective and to organise the corresponding implications for practice.

To our knowledge, this is the first qualitative study to focus on the experiences of elderly Portuguese patients living with AF, many of whom have been living with the diagnosis for almost two decades. In many ways, the results align with qualitative studies from other countries, which also describe the shock of diagnosis, fear of complications, uncertainty, unpredictability of symptoms, the central role of family and difficulties in navigating health systems. Rather than diminishing the contribution of this study, this convergence suggests that existing international evidence can be leveraged in the Portuguese context. At the same time, our findings add context‐sensitive details regarding long‐term follow‐up in Portugal, including the impact of rurality, transportation and resource limitations on continuity of care. Together, these insights provide a nuanced, patient‐centred picture of what it is like to live with AF in the long term, offering a basis for designing interventions that are both evidence‐based and sensitive to local realities.

5. Conclusion and Future Studies

This qualitative study presents a patient‐centred, practice‐oriented account of how individuals manage AF over the course of many years. Together, the five themes trace a trajectory from diagnostic shock and life disruption, through the gradual integration of AF into daily life and the negotiation of key relationships, to the final articulation of unmet needs and proposed support improvements. Patients described how an unexpected diagnosis of AF reshaped their sense of vulnerability and security, often leaving a lasting mark that influenced subsequent experiences of symptoms, treatment and help‐seeking.

A distinctive contribution of this study is its focus on older adults with a long history of AF, with an average of 19.05 years since diagnosis. The fact that patients still remember the diagnosis phase so vividly and continue to report fear of stroke, uncertainty about symptoms, and limitations in their daily lives suggests that early encounters with AF and health services may shape the entire course of the disease. The shock of diagnosis, hypervigilance and avoidance behaviours are not simply transient reactions, but they may persist and become long‐term patterns of living with AF when emotional needs and structural barriers remain insufficiently addressed. The five themes highlight areas where current care is insufficient and where integrated models could be more fully operationalised. Patients requested clearer information and opportunities to understand their symptoms, support that takes the emotional burden of AF seriously, more predictable and accessible follow‐up (especially in rural areas), and the involvement of family members who are already central to daily care.

The results underline the need to move beyond viewing AF treatment as a purely clinical issue and to adopt an approach that explicitly addresses the long‐term emotional, relational and structural dimensions of the disease. Future studies should further examine how early experiences with diagnosis influence long‐term adaptation, comparing patients at different stages of the disease and in diverse care settings.

Longitudinal and mixed‐methods research could shed light on how trajectories of fear, uncertainty and acceptance evolve, as well as how specific interventions, such as structured education, psychosocial support, or community follow‐up, may alter these trajectories. Furthermore, including caregivers and healthcare professionals in future qualitative studies would provide a more comprehensive view of the relational and systemic dynamics that sustain or alleviate the burden of living with AF in the long term.

6. Implications for Practice

The findings of this study have several implications for clinical practice and service organisation, particularly when viewed through integrated care models such as AF‐CARE.

The findings directly address the domains of symptom and rhythm management, anticoagulation and ongoing evaluation of needs. The description of palpitations, fatigue and dizziness that constrain daily functioning highlights the importance of systematically assessing the subjective burden of symptoms, and not only their clinical severity. The expressed need for clear information, safety reassurance and predictable anticoagulation monitoring points to the centrality of stroke prevention in patients' narratives. The requests for planned follow‐up, coordinated care and family involvement aligned with the call for regular, person‐centred reassessment of needs over time. As comorbidity and risk‐factor management were rarely discussed spontaneously, we did not derive specific experience‐based implications for this component within the AF‐CARE model.

Overall, these findings reinforce the need to move beyond one‐size‐fits‐all care toward a more responsive and person‐centred approach. Integrating patient perspectives into frameworks such as AF‐CARE can help tailor interventions to patients' values, contexts and goals, thereby increasing engagement, improving outcomes and providing care that is not only clinically effective but also meaningful from an experiential perspective. As AF becomes more prevalent in ageing populations, aligning care with patients' experiences becomes both a strategic and ethical imperative.

7. Limitations

Despite its strengths, this study has limitations. It was conducted in a single public hospital in northern Portugal, which may limit the transferability of findings to other regions or healthcare systems. The sample included only cognitively intact individuals willing to participate in interviews, potentially excluding those with more severe illness, cognitive impairment, or communication barriers. The hospital‐based setting may also have introduced social desirability bias when discussing healthcare professionals. Although data saturation was achieved, the perspectives of individuals from more diverse socioeconomic or rural backgrounds may not be fully represented. The inclusion of participants with a wide range of time since diagnosis, including many long‐term cases, enriched our understanding, but may have introduced recall bias. Nevertheless, the factors that influence patients' quality of life today remain relevant regardless of when the diagnosis was made.

Author Contributions

Conceptualisation, A.M.M., F.L. and M.G.P.; methodology, A.M.M., F.L. and M.G.P.; software, A.M.M. and A.F.; formal analysis, A.M.M., A.F. and M.G.P.; writing‐original draft preparation, A.M.M.; writing‐review and editing, M.G.P. and F.L.; supervision, M.G.P. and F.L.; funding acquisition, A.M.M. All authors have read and agreed to the published version of the manuscript.

Funding

This study was conducted at the Psychology Research Centre (PSI/01662), School of Psychology, University of Minho, funded by the Foundation for Science and Technology (FCT) through the Portuguese Research Funds (Ref.: UIDB/PSI/01662/2020). The first author (Ana Mónica Machado) was funded by national funds through FCT (grant reference: 2023.05576.BD), as part of the project with the DOI identifier https://doi.org/10.54499/2023.05576.BD.

Ethics Statement

This study was conducted according to the Declaration of Helsinki and approved by the Human and Social Sciences Ethics Committee of the University of Minho (CEICSH 070/2022), and the Ethics Committee of Centro Hospitalar e Universitário do Porto [2022.072 (057‐DEFI/058‐CE)].

Consent

Informed consent was obtained from all subjects involved in the study.

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

As part of the ethical approval process and due to the sensitive nature of the questions asked in this study, survey respondents were assured that raw data would remain confidential and would not be shared or transferred to any third party.