“How Long Will This Heart Beat?”—Temporal Experiences of Adults With Congenital Heart Disease: An Interpretative Phenomenological Analysis

Abstract

Congenital heart disease (CHD) is one of the most prevalent congenital conditions. Over 90% of individuals with CHD now survive into adulthood, yet many experience physical limitations that can lead to a sense of exclusion from social participation. Existing research on adults with CHD highlights a profound sense of otherness and a strong desire for normalization. However, a systematic investigation into the experience of temporality in adults with CHD is currently lacking. Altered experiences of temporality have been documented in individuals with mental disorders and severe physical illnesses, and more recently in patients with heart disease that first manifests in adulthood. In our qualitative study, we included a purposive sample of 14 patients aged 18–29 years. Of these, six participants (four women and two men) were diagnosed with moderate, seven participants (three women and four men) with severe, and one male participant with mild CHD. Phenomenologically semi-structured interviews were conducted and analyzed using interpretative phenomenological analysis. Participants reported that their sense of temporality was altered owing to the serious nature of their heart condition. Their experiences were captured in five key themes: (1) Biographical disruptions led to a changed identity, (2) My life could end unexpectedly, (3) I feel more mature compared to my peers, (4) Temporal flexibility does not exist with CHD, and (5) Finding a balanced relationship with temporality. This study is the first to systematically investigate temporal experiences in adults with CHD. Novel aspects were identified, including the experience of temporal inflexibility and coping strategies for dealing with adverse temporal experiences.

Introduction

Congenital heart disease (CHD) is the most common congenital disorder, affecting approximately 12 million individuals worldwide as of 2017 (Zimmerman et al., 2020). It encompasses a broad spectrum of structural cardiac anomalies, ranging from mild defects such as ventricular septal defects to moderate conditions like coarctation of the aorta, and complex malformations including transposition of the great arteries (Baumgartner et al., 2021). Advances in surgical techniques, interventional cardiology, and intensive care have led to significant improvements in survival rates, with over 90% of individuals with CHD now living into adulthood (Baumgartner et al., 2021; Mandalenakis et al., 2020). Nevertheless, many continue to experience physical limitations and require lifelong medical treatment or repeated interventions (Zomer et al., 2011).

Altered experiences of time have been discussed in the context of mental illness since the early 20th century (e.g., Minkowski, 1933/1971; cf. the summary in Kupke, 2009; Juckel et al., 2022). The so-called “psychopathology of lived time” (Minkowski, 1933/1971) draws heavily on the philosophical work of Bergson (1920/2006, 1927), Husserl (1928/1980), and Heidegger (1927/2006). Contrary to the notion of time as a priori container, these thinkers conceptualized temporality as extended, intrinsically linked to human intentionality, and fundamentally future-oriented. These philosophical reflections laid the groundwork for temporal analyses of mental disorders (Minkowski, 1933/1971; Straus, 1928/1963). In the paradigmatic case of severe depression, patients describe a deceleration of time’s flow, a dominant orientation toward the past, and a diminished sense of future possibilities (Minkowski, 1933/1971, 131ff, Straus, 1928/1963, 357f).

Such findings have been substantiated and further developed through contemporary phenomenological and qualitative research—not only in severe depression but also across a range of psychiatric conditions (Fuchs, 2013; Moskalewicz & Schwartz, 2020; Stanghellini et al., 2017; Vogel et al., 2018). Temporality has likewise emerged as a central theme in somatic medicine. Scholars such as Toombs (1995) and Carel (2016, 2018) have described illness as a biographical rupture, involving a loss of temporal continuity, a foreshortened future, and a breakdown of previously held hopes and expectations. Qualitative-empirical studies have similarly demonstrated that severe physical illness can significantly alter patients’ temporal experience (Laranjeira et al., 2015; Moskalewicz et al., 2022; Nilsen & Elstad, 2009; Råheim & Håland, 2006; Zhou, 2010).

Disruptions of temporality have also been suggested in the context of cardiovascular diseases (CVDs). Drawing on an existential-phenomenological approach, Aho (2019, 2022) described his own experience following a heart attack as being confined to a meaningless present, confronted with a drastically limited future, and experiencing a sudden sense of premature aging. Recent qualitative research has shown that serious acquired CVDs—such as myocardial infarction—can result in profound bodily insecurity, lifestyle changes, and a transformation in temporal experience (Aristidou et al., 2018; Broschmann, Nebel, Kleinert, et al., 2025; Broschmann, Nebel, Krivzov, et al., 2025; Haydon et al., 2017). In a meta-synthesis of studies involving survivors of out-of-hospital cardiac arrest, Haydon et al. (2017) identified a disruption in the biographical flow of time, a sudden confrontation with mortality, and a perceived shortening of the future. Although not systematically addressed, similar temporal experiences have been reported across numerous qualitative studies on patients with sudden cardiac arrest (Bremer et al., 2009; Forslund et al., 2014; Ketilsdottir et al., 2014; Palacios-Ceña et al., 2011; Whitehead et al., 2020).

Previous research on adolescents and adults with CHD has highlighted a pronounced sense of otherness, shaped by the biographical experience of growing up with a chronic condition, as well as the ongoing striving for normalization (Callus et al., 2013; Claessens et al., 2005; Nebel, Freiberger, et al., 2025). While temporal experiences have occasionally been mentioned in qualitative studies—such as an uncertain outlook on the future (Callus et al., 2013; Nebel, Le Butt, et al., 2025), a heightened focus on the present (Berghammer et al., 2006), or a perceived maturity beyond that of peers (Berghammer et al., 2015)—these aspects have remained secondary and largely unexplored. Despite these initial insights, a systematic investigation into how adults with CHD experience and conceptualize time remains absent from the current literature.

Aims

In examining the current state of research, the central question of the study presented here is what experiences of temporality are reported by young adults with CHD. Secondary, the aim of this study is to examine the extent to which this experience affects these individuals’ lives and to explore potential positive aspects of altered temporal experiences.

Methods

Theoretical Background

This study is grounded in interpretative phenomenological analysis (IPA), a qualitative methodology aimed at developing an in-depth understanding of individuals’ lived experiences. IPA is well established within health psychology (Brocki & Wearden, 2006) and has been applied to a wide range of topics, including chronic back pain (Smith & Osborn, 2007) and stroke in young adults (Dwyer et al., 2019). Central to IPA is the examination of how individuals interpret and ascribe meaning to their experiences, with a strong idiographic commitment to the particular meaning structures of each case (Harré, 1979). Although IPA is rooted in idiographic traditions, it is theoretically informed by both phenomenological and hermeneutic–interpretative approaches. Accordingly, IPA aligns not with a purely descriptive phenomenology but with a hermeneutic orientation (Smith et al., 2022).

Phenomenology emerged as a philosophical movement in the early 20th century with Husserl’s call to return to the “things themselves.” Husserl maintained that everyday phenomena are often obscured by preconceived idealistic or materialistic assumptions and argued that access to phenomena requires the systematic bracketing of researchers’ presuppositions (Husserl, 2009, p. 40). Heidegger (1927/2006) extended phenomenology by integrating existential and hermeneutic dimensions. In Being and Time, he proposed that phenomena are not simply given but must be disclosed through interpretative engagement. Merleau-Ponty further developed phenomenology by emphasizing the embodied character of experience, distinguishing between the material body and the lived body (corps vécu) (Merleau-Ponty, 1966/1974).

While the examination of temporal experience is central to phenomenological research, reflections on temporality can be found long before phenomenology was established as an independent philosophical and scientific discipline. As early as St. Augustine, the structure of temporal experience was examined, with time understood as fundamentally rooted in the present (Augustine, 2004). In contrast to classical philosophical conceptions of time—such as Aristotle’s account of time as a succession of discrete “now-points” (Aristotle, 1987)—phenomenology, in dialogue with life-phenomenological approaches, redirected attention toward lived time, that is, the temporality and temporalization of human existence. Husserl addressed temporality extensively, engaging with Bergson’s notion of durée and analyzing the intentional structures of inner time-consciousness. He demonstrated that the present emerges not from isolated instants but from the dynamic interplay of primal impression, retention of the past, and protention toward the future (Husserl 1928/1980). Merleau-Ponty similarly emphasized the inseparability of experience and temporality, arguing that subjectivity itself must be understood as fundamentally temporal (Merleau-Ponty, 1966/1974, p. 480). Heidegger further radicalized this position by rejecting the notion of time as an objective entity, conceptualizing temporality instead as unfolding through human existence and articulating human finitude through the concept of being-toward-death (Heidegger, 1927/2006).

In contrast to phenomenology’s focus on lived experience, hermeneutic philosophy is primarily concerned with the interpretation of texts, narratives, and expressions of human meaning. Key methodological contributions stem from philosophers such as Gadamer (2010) and Ricœur (1984). Hermeneutics seeks to understand meaning in context, acknowledging interpretation as a historically and situationally embedded process in which preconceptions initially orient understanding (Gadamer, 2010). Ricœur (1984, p. 51) argued that narrative endows temporality with specifically human meaning, which becomes accessible only through reflective engagement with time. Given the temporal, diachronic, and situated nature of narrative, hermeneutics rejects the assumption of purely objective phenomena and instead promotes critical reflection on underlying assumptions and biases.

Situated within this hermeneutic–phenomenological tradition, IPA draws on both phenomenological inquiry into lived experience and hermeneutic approaches to the interpretation of meaning structures. Methodologically, IPA is characterized as a “double hermeneutic” (Smith et al., 2022): participants engage in making sense of their experiences, while researchers, in turn, interpret these sense-making processes.

Sampling Approach

The study protocol was developed in accordance with the Declaration of Helsinki and received approval from the local Ethics Committee of University Medical Center Göttingen on January 19, 2022 (approval no. 18/8/20). All participants provided written informed consent prior to inclusion. Registration took place on February 18, 2022 at the German Clinical Trials Register (DRKS) under the project number DRKS00028096.

A purposive sampling strategy was employed to recruit eligible participants. Recruitment was facilitated through flyers, and participant information sheets were distributed at a university hospital, a specialized outpatient clinic for adults with CHD, and via nationwide patient organizations. Recruitment took place between October 1, 2023, and July 15, 2024.

Inclusion criteria were age between 18 and 29 years, a confirmed diagnosis of CHD with significant impact on life since childhood, sufficient proficiency in German, and the absence of cognitive impairments or psychiatric disorders (e.g., mild to moderate depressive episodes and anxiety disorders) that could interfere with participation in the interviews. Exclusion criteria included the absence of a CHD diagnosis, insufficient German language proficiency, cognitive impairments that would hinder participation, and severe psychiatric conditions such as substance abuse, severe depression, or schizophrenia.

In most cases, physicians distributed the study brochure to potentially eligible patients. When patients or their physicians expressed interest in participation, the research team contacted the individuals to arrange an initial information session by telephone. During this session, written informed consent was obtained. Participants received comprehensive information about the study’s aims, procedures, and focus, as well as details on data pseudonymization and use. Using examples from other somatic conditions, such as oncological diseases, participants were provided with contextual understanding of how illness can affect temporal perception, particularly future outlook, with an emphasis on exploring comparable effects in the context of CHD. Participants were assured that the research team was not clinically involved in their care and that their physicians and caregivers would not be informed about their participation. Throughout the study, participants were encouraged to seek clarification or ask questions at any time.

Procedure and Interview

Following the provision of written informed consent, phenomenological interviews were conducted by a member of the research team, with durations ranging from 35 to 79 min. Given the nationwide sampling strategy, participants unable to attend in-person interviews at the university hospital were offered remote participation, either via telephone or through Sprechstunde Online, a General Data Protection Regulation–compliant platform designed for medical consultations. All interviews were audio-recorded and subsequently transcribed verbatim with the assistance of a professional transcription service for analysis.

The interviews were guided by a semi-structured phenomenological interview schedule developed in advance (see Appendix I). The guide was constructed through a process of reviewing relevant literature and iterative discussions within the research team. Additionally, insights were drawn from engagement with phenomenological theorists (e.g., Heidegger’s concept of finitude) and consultations with affiliated philosophical researchers on various dimensions of temporality, including time rhythms, rituals, and the influence of past, present, and future experiences, as well as perceived age. The guide was pilot-tested with three patients, leading to a reduction in the number of questions and simplification of the language to enhance clarity. None of the pilot participants were included in the main study.

Interviews were conducted with a phenomenological stance characterized by openness, non-judgment, and curiosity. To establish rapport and encourage trust while eliciting rich descriptions of lived experience, the interview schedule was intentionally flexible and open-ended. Participants were encouraged to discuss the aspects of their experience most meaningful to them, with the interviewer maintaining broad and responsive questioning. Topics were approached tangentially rather than directly, allowing emergent themes to guide the conversation. Initial questions focused on the participants’ experiences with heart disease, such as “Would you like to start by telling us about your heart condition?” and “How does heart disease affect your life?”

In many cases, participants spontaneously introduced temporal dimensions, such as narrowly escaping death or encountering medically significant temporal routines (e.g., medication schedules or check-ups). In such instances, the interviewer sought to explore these temporal phenomena in greater depth by prompting detailed descriptions of specific situations. Where temporal aspects were not spontaneously addressed, questions regarding temporality were introduced broadly, for example, “How does time feel in your life?” and “What influence does heart disease have on your perception of time?” If participants found these questions too abstract, more targeted prompts were employed: “How do you think about your own death?”, “What role does mortality or finitude play in your life?”, “How do you experience your past, present, and future, and what role do these timeframes play in your life?”, and “Has your perceived age changed relative to your actual age due to heart disease?” In most cases, however, it was unnecessary to explicitly pose all these questions, as participants frequently raised these topics independently.

Analytic Approach

Data collection and analysis were conducted collaboratively by a 29-year-old female psychologist and a 36-year-old male physician, with both researchers actively engaged throughout the entire process. Both had prior experience in qualitative research; the physician additionally had eight years of experience in psychiatry and psychosomatics and completed a dissertation in philosophy and phenomenological psychopathology. The socio-cultural backgrounds of both researchers—including gender, age, sexual orientation, educational background, ethnicity, and religiosity—were reflected upon and documented prior to the study. Researchers engaged in systematic reflection on their preconceptions and suspended these through the use of bracketing. To enhance methodological rigor, each researcher produced a document during the pilot phase detailing key background information and personal associations relevant to the research topic. These documents served as the basis for reflective discussions between the two researchers, and each interviewer provided feedback to the other after reviewing the audio recordings.

Following each interview, initial impressions and relevant excerpts were documented on reflection sheets. Each interview was reviewed twice, with comments made regarding both interview conduct and thematic interpretation. Audio recordings were transcribed verbatim line by line by a professional typewriting service, following the guidelines outlined by Dresing and Pehl (2010). All identifying information, including names, cities, and occupations, was pseudonymized. After transcription, each researcher listened to the recording while reviewing the transcript. The transcripts were then imported into MaxQDA for further analysis. During a second reading, initial exploratory comments were recorded, addressing descriptive, linguistic (e.g., laconic, euphemistic, or verbose language), and conceptual aspects (e.g., “What does it mean for the participant to feel old?”).

Each researcher subsequently coded initial themes independently, striving to remain as close as possible to the participants’ lived experiences and the textual material. Weekly meetings were held to discuss emerging themes, leading to collaborative decisions regarding the final set of themes. A third researcher—a sociological research assistant with extensive expertise in qualitative research—was frequently involved in discussions and evaluations.

Once personal experiential themes (PETs) were established, the next step involved collating themes across participants in separate Word documents, identifying superordinate and subordinate themes based on similarities and differences. Weekly team meetings were conducted to assess the relevance and fit of the themes with the material. This process culminated in the identification of group experiential themes (GETs), which were condensed to represent the core themes across all participants. Finally, the researchers verified that the coded excerpts aligned with the overarching themes and explored both convergences and divergences among different interview segments.

Findings

During the recruitment phase, 15 eligible young adults with CHD were contacted. One woman, after initially accepting the invitation to the briefing, did not respond to further contact attempts. The final study sample therefore consisted of 14 participants—seven men and seven women—aged between 18 and 29 years (median age: 24 years). Six participants (four women and two men) were diagnosed with moderate CHD, according to the classification of the European Society of Cardiology Guidelines (Baumgartner et al., 2021). Seven participants (three women and four men) had severe CHD, and one male participant had a mild form of CHD.

Five major GETs emerged from the interviews, which are discussed in detail below:

(1) Biographical disruptions led to a changed identity

(2) My life could suddenly be over

(3) Compared to my peers, I feel more mature

(4) Temporal flexibility does not exist with congenital heart disease

(5) Finding a good relationship with temporality

All quotations were translated from German into English and closely aligned with their original meaning. In cases where translation proved challenging, alternative phrasings were discussed within the research team to preserve semantic accuracy.

Biographical Disruptions Led to a Changed Identity

The experience of time among individuals with CHD can be described as a dynamic process of realization. During early childhood, CHD is often not perceived as something abnormal but rather as an inherent part of one’s identity. Only through temporal disruptions do individuals become consciously aware of their heart condition. Thirteen of the fourteen participants reported such a process, characterized by explicit temporal disruptions that required them to integrate the illness into their personal identity. One male participant, who had a very mild heart defect, reported no biographical disruptions. For Lasse, Sophie, and Fritz, experiences of medical diagnostic procedures and interventions like life-threatening surgeries and catheter-based interventions were particularly associated with changes in their awareness of personal identity.

Lasse’s narrative can be considered paradigmatic for this temporal experience. He describes, in retrospect, the first of several biographical turning points:

And since, as I said, I was only twelve at the time and not much had been said about it up until then, the term heart transplant came up and I was a bit like, “What, huh? I thought it was”—Because it was just, well, as I said, I knew that I had something, because I had a scar, and it had always been there. […] I THOUGHT everything was fine, I thought there was nothing more to come.

Lasse expresses his surprise—almost shock—upon realizing that his heart condition was not a resolved issue from the past but a current and future threat, particularly with the prospect of a heart transplant. This moment redefines the meaning of his illness: from something invisible and inconsequential to something abnormal and threatening. His emphasis on the word “thought” highlights the dissonance between his prior perception of normality and the reality of his cardiac condition, revealing the rupture of a previously maintained illusion.

Sophie, also describes how her awareness of CHD emerged not from early memories but from a significant moment of medical deterioration and diagnostic assessment:

Well, I have no memories of the first few years. I cannot remember any difference between a normal doctor’s visit for the flu or a vaccination and visits to the cardiologist. It was all kind of the same for me, let’s say. […] The first really significant moment for me was when I was twelve, when someone said: There is something not so nice here. I think you perceive it completely differently then. And then the cardiac catheterization—that was not a pleasant experience. So, from then on, I really started to see it as an issue or an illness.

In Sophie’s case, it was not until adolescence—and a particularly stressful medical experience—that CHD emerged as a conscious and problematic aspect of her life narrative.

Also Fritz, similarly describes how a planned surgical intervention in childhood abruptly disrupted his sense of normalcy:

Well, that was definitely also the case during the Fontan operation, when I was already eight or so. I realized a lot more then, unlike when I started primary school, let’s say. And then when these topics came up with school sports and everything. Before that, it wasn’t really an issue.

Fritz recounts how he had frequent hospitalizations in early childhood, which he initially perceived as normal. It was only after the Fontan procedure and changes related to school and physical activity that his awareness of the illness deepened. Beyond the medical intervention, Fritz’s exclusion from peer group activities, such as school sports, also highlighted his experience of being different. Also for other participants, the turning point was not a medical procedure or physical deterioration but rather the social realization of being different. The first restrictions, prohibitions, or exclusions from peer activities marked the beginning of a disrupted sense of normality. Hermann, reflects:

Well, I was told about it quite early. I think around the age of two or so. But I only realized what it meant when I was maybe six or so, when I was not allowed to go to soccer games or anything like that. Or was not allowed to join a sports club.

In most cases, the experience of CVD was initially presented externally—whether through a diagnosis, an upcoming procedure, or imposed limitations. Through these repeated biographical ruptures, participants developed a sense of being different and began to form an identity shaped by their illness. All participants were able to recall specific, formative events in their life histories that marked this transition.

My Life Could Suddenly Be Over

What fundamentally changes in the lives of people with CHD once they become aware of their condition is a significant shift in their temporal perspective: future horizons become shorter and increasingly uncertain. Approximately three-quarters of participants reported life-threatening situations. For example, Ronja experienced a malfunction of her cardiac device, was not taken seriously by physicians, and subsequently fainted due to severe cardiac arrhythmia. Hermann had to be resuscitated during physical education class at school.

As a result of such experiences, and through the integration of CVD into their identities, the presence of death becomes a constant psychological companion. For Finn and Lisa-Marie, it was the feedback from treating physicians that had a profound impact on them. Finn, describes this altered temporal awareness:

Because I am extremely scared that it could be over tomorrow—currently, also because of my heart. I go to the doctor, and they say: “Everything is fine! […] But what I have carried with me over the years is something my mother once told me. Back then, doctors did not say this to me directly, but she was told, even after the surgery: “Yeah, you will be lucky if he lives past 20 … or even reaches 30.” That is something she heard again and again when I was little”.

Finn internalized the limited life expectancy given by doctors to his mother—a prognosis that now functions as a constant undercurrent of fear:

I often get scared that it is happening. I often lie in bed at night and wonder: “Should I call an ambulance?” I sit there—dizzy, lightheaded, my heart beating irregularly. I lie there, tired, unable to sleep because my heart is simply … let’s say … beating too fast. I feel like I have high blood pressure. […] It is always been my companion! Honestly, I would prefer it WHEN it happens.

Finn’s account reveals that it is not death itself but rather its unpredictability that he finds most distressing. In contrast to illnesses with more predictable courses—such as cancer—CHD represents a continuous existential threat. The desire to exchange uncertainty for the “predictability” of another fatal disease may seem paradoxical, yet it illustrates how a shortened future horizon leads to living in the immediate present, without the capacity for long-term planning.

Lisa-Marie, diagnosed with a moderate heart defect, recounts a similarly unsettling moment:

He [the doctor] said: “You can be as fit as a fiddle today […] do your sports or whatever. And then, afterward, you lie down in bed and will not wake up the next morning.”

Such statements deeply undermine participants’ confidence in the future. For some female patients—like Juliana, Lisa-Marie, and Ronja—the issue of family planning emerged as particularly significant, reflecting the experience that a life-threatening heart condition could constrain the future prospects for a planned or unborn child. Participants who have been pregnant before, or those considering pregnancy, were especially affected by anxieties about their own survival and that of their children—often exacerbated by medical professionals who emphasized the risks of high-risk pregnancies.

Juliana, living with a severe heart defect, describes the existential fear she carried during childbirth:

I expected my heart to stop beating after the birth. But it did not happen. That my heart would stop beating after I had the little one. But thank God, touch wood, I made it. Everything was fine. It was just like that during birth. […] When will I die? You just keep hearing this heartbeat. Will my child be alone and still so small? Under 18? Will I be gone before he turns 18? Because how long will this heart beat?

Here, the threat of cardiac death looms like the sword of Damocles, raising broader questions of generativity. Juliana’s imagined death is not only a personal concern—it impacts her ability to care for her child and fulfill the role of a mother. This temporal uncertainty leads her to question whether she will live long enough to raise her child.

For Ronja, this fear translates into a decision to forgo pregnancy entirely:

I am afraid I could die if I had a child. Or the child could die. Or both. And I do not want that.

In response to this existential threat, some participants and their families adopt a matter-of-fact, emotionally distanced approach. Lisa-Marie recounts:

If it happens, it happens. […] We are open and honest about it. Before the surgery, because something could have gone wrong, my mum asked: “How do you want your funeral to be?” I said: This and that. And she said: Okay, because we had discussed everything. Anything could have happened.

This stoic, almost pragmatic perspective on death serves as a coping mechanism. By framing death as inevitable and unpreventable, participants create emotional distance from overwhelming anxiety. The attitude of “It is what it is” becomes a way of confronting a highly uncertain future.

For many, this confrontation with mortality leads to a heightened sense of maturity. Participants described themselves as feeling older than their peers—more aware of life’s fragility, and more attuned to the reality of death than others their age.

Compared to My Peers, I Feel More Mature

As a result of repeated biographical disruptions, ongoing confrontation with illness and death, and recurring life-threatening events, many participants reported feeling prematurely aged compared to their peers. One-third of them also described physical weakness and limitations due to their heart condition, which reinforced this perception. For instance, Finn, reported feeling at least 10 years older than his actual age and stated that he does not feel as physically capable as others his age—whether at work or during leisure activities.

However, it is not primarily the sense of physical aging that stands out. Rather, most participants emphasized a feeling of being older in terms of psychological maturity. This sense arises through one’s own behavior, which is often reinforced by feedback from others. This may involve communication, as in the case of Finn; taking responsibility for one’s own life, as seen with Ronja; or a changed self-confidence regarding life planning, as exemplified by Lisa-Marie.

Lasse describes this perceived maturity by comparing his thinking and communication style to that of older individuals:

So, when I sometimes talk about certain things, just normally, then I feel quite … well, quite a bit older. Because, as I said, I have already been through things that other 17- or 18-year-olds have not yet experienced.

Lasse aligns himself with older individuals in both behavior and worldview. Similarly, Ronja perceives her peers as immature and states that she feels more aligned with adults:

Well, sometimes I do feel older. When I see people around me who are about my age, or exactly my age, they seem a bit more immature to me. They can still do silly things and all that. And I have to be careful about everything. So then, yes—I do feel a bit more grown-up than others. I get along better with adults. I used to have younger friends, but now, when I am out with my mum, we meet acquaintances who feel like real friends to me. So, as I said, I get along better with older people than with people my own age.

For Ronja, the sense of maturity arises from a lack of shared experience and responsibility with peers her own age. Lisa-Marie also shares this sentiment. She recalls being described as particularly mature by her teachers during adolescence:

Very mature. Very mature. My teachers all said, well, for her age—I was 16 at the time—they said she was very mature. She knows what she wants to do, she knows her future, and they said: that is crazy. At that age, many people are still unsure about their career path. They leave school saying, “I want to do this, then maybe that, or something else.” She [the teacher] said: that is crazy. […] Well, let me put it this way: intellectually and behaviorally, I feel rather older.

Lisa-Marie, like Ronja, emphasizes her ability to set priorities, think rationally, and make long-term decisions—traits she associates with adult maturity.

However, this feeling of being more mature is not consistent across all situations or emotions. For about one-third of the participants, this perceived maturity is accompanied by contradictions. Lasse, for example, also reports episodes in which he behaves in emotionally immature ways—describing himself as quick-tempered or childish—despite simultaneously reflecting deeply on his life story and feeling older than his peers.

Temporal Flexibility Does Not Exist With Congenital Heart Defect

A central GET for three-quarters of the participants is the perception of temporal inflexibility. In one case, this was experienced as a disease-related deficit or perceived necessity, as reported by Ronja and Lasse; in another, it was described as a desire for temporal structuring that emerged from personality traits or can be described as a coping strategy, as in Sophie’s case.

Ronja, for instance, describes how she is compelled to meticulously plan every aspect of her life, with her heart disease occupying a significant portion of her time:

You must plan more. I notice this with my boyfriend too. He is much more spontaneous, while I am, basically, my life is ... my week is planned from week to week, with my therapies and everything. So, I do not have as much time as other people my age ... I have to time everything. I must figure out when I start work, when I finish work, when do I have school, when does school end, and which appointments can I schedule where?

Ronja reflects how her spatialized organization of time differs considerably from that of her partner. In addition to this, she must plan for the unpredictable:

You plan something, and then the time you could have used for something else is gone. Because you are planning something related to your heart. For example, you have a cardiac catheterization, so you have to plan. When do you do this, when do you do that? And then it is already evening again because you had to plan the whole time to get everything sorted out. […] And then the heart is at the forefront again, because the heart is important, the heart is important.

Like Ronja, Lasse emphasizes the importance of structured time management, with his focus on improving his heart health:

I must have a very structured daily routine now, because it is important that I take my medication and everything. That is important too.

This statement suggests that Lasse is reiterating this need to himself, underlining the cognitive and emotional dimensions of self-regulation. Sophie perceives this structured approach as integral to her personality:

Well, I am more of a planner. Totally, I like to plan for several weeks or months in advance. But if someone spontaneously asked me to meet up for drinks in two hours, I would do that too. Exactly. But personally, I always find it more pleasant when I know that in advance. I also like to plan my week at the beginning of the week.

Similar to Ronja, Sophie experiences a dissonance between her own time management approach and that of her partner. This requires her to adopt multiple contingency plans to maintain a sense of security and control:

He always says: “We live here and now, and we are doing this now, and if that does not work, we will do it this way!” But I always need a plan A, B, and C! And for me, there is no other option, and for him, there is always only plan A.

The necessity of constant planning and having backup strategies is less a reflection of Sophie’s personality and more a coping mechanism for dealing with her heart disease. This preoccupation with scheduling leads her to feel more distressed, as she constantly seeks to protect herself through the organization of her time.

Finding a Good Relationship With Temporality

Due to the complex temporal experiences associated with living with a congenital heart defect—such as biographical disruptions, a shortened and uncertain future horizon, premature aging, and a loss of temporal flexibility—participants are compelled to actively negotiate their relationship with time. On the one hand, they express a desire to look toward the future with positivity and confidence. On the other hand, they emphasize the importance of consciously engaging with and shaping the present.

All participants reported strategies for coping with these temporal challenges. Fritz highlighted the wish to move beyond the past and look toward the future, while simultaneously experiencing the present in a deliberate manner:

But I say, the past is the past, and I cannot change anything about it. I have to make sure that I look forward [...] the future will help me move forward, and somehow make sure that I align myself positively and look for things that I enjoy and that will help me move forward.

For Fritz, this temporal shift includes not only a more hopeful outlook on what lies ahead but also a heightened awareness of the present moment:

I try to concentrate on the now, because I don’t have ... Yes, I think it does not make any sense ... Sometimes, when I talk to my parents or someone about something that is happening in two weeks, I think—why should I already be thinking about that? I just ... Yes, that far ahead ... I simply need my energy in the present moment.

A comparable focus on the here and now and a conscious awareness of the present was evident in the accounts of Toni, Lasse, and Lara. Toni who has a moderate heart defect, also reflects a shift in temporal focus—moving away from deferral and toward immediacy:

And I think I am maybe using my time—or even my life—more consciously. I think I have also shifted my focus a bit to: I want to experience something now. So many people say, “Yes, when I retire, I will go traveling.” And then, when the time comes, they say it again ... and again. But I am more like: No, you could get hit by a bus tomorrow. Who knows if I will even be fit enough to travel then. So, I think I am more like: I want to experience what I can now, and not wait for the perfect timing someday.

Lasse echoes this intention to focus on the present and to treat each day as a new beginning, despite a long and difficult history of illness:

I never try to start the day thinking, “Yesterday was so shitty, so today will definitely be shitty too.” I always try to approach the day as a new one.

Even though participants’ quality of life is sometimes severely constrained by their condition and their future remains uncertain, they still aim to make the most of the time available to them. This may take the form of cultivating close personal relationships, such as those with family (as in Malte’s case), or engaging in personally meaningful experiences (as described by Finn):

But for me, on the other hand, it is better to have more time in life—to really, let us say, use that time to do what you enjoy or [...] to experience things that bring you joy. Because right now, nothing else is possible anyway.

Similarly, Lara emphasizes the importance of meaningful, emotionally rich experiences:

I use the time I have. I think I would rather have time than money. I want to experience a lot, create memories—and that is really important to me.

Lara’s perspective illustrates what could be described as a future-anterior orientation—the idea that future memories should one day be looked back on with fulfillment: “It will have been worth it.” This orientation shows how participants strive to ensure that their present becomes meaningful in retrospect, despite an uncertain trajectory ahead.

Taken together, participants describe a marked shift in how they plan and experience time. The present moment gains renewed significance—it becomes something to be valued, not overshadowed by the burdens of the past or the uncertainties of the future.

Discussion

In our qualitative study, we identified temporal experiences among a cohort of young adults with CHD that are characteristic of living with a chronic cardiac condition. Unlike prior research on adults with CHD, which predominantly focused on general lived experiences (Berghammer et al., 2015; Callus et al., 2013; Claessens et al., 2005) or coping strategies (Callus et al., 2013), this study is the first to systematically explore the experience of temporality in this population. Our analysis reveals novel and essential facets of the lived experience of adults with CHD that hold significant implications for clinical practice. A major strength of this work lies in its specific and novel research focus, as well as the methodological rigor employed. The phenomenological and hermeneutic framework of IPA proved particularly effective for investigating temporality, as it prioritizes participants’ subjective experiences while allowing for nuanced interpretation of the data. Additionally, despite the severity of their conditions, the majority of participants presented with moderate to severe heart defects, offering a relevant clinical sample.

While the sample was homogeneous in terms of age group and diagnosis, the inherent heterogeneity within this population facilitated validation of the findings. The study maintained a balanced gender distribution (seven men and seven women), contrasting with studies of patients with acquired cardiac disease in younger and middle-aged adults, given that women are epidemiologically affected by acquired CVD (e.g., like coronary artery disease with myocardial infarction) later in life than men (cf. Broschmann, Nebel, Kleinert, et al., 2025). Participants were recruited from diverse regions across Germany, and varied educational backgrounds were represented, with approximately one-third holding academic qualifications.

Our findings indicate that adults with CHD experience recurrent biographical disruptions, which progressively erode their primary sense of normalcy and foster a sense of otherness. In addition to being excluded from age-typical activities, medical interventions and life-threatening events are experienced as critical biographical turning points. This contrasts with individuals who develop CVD in adulthood, who often report a single biographical disruption following a normative childhood and adolescence (Andersson et al., 2013; Bremer et al., 2009; Broschmann, Nebel, Krivzov, et al., 2025; Haydon et al., 2017). These biographical turning points contribute to an awareness of mortality and a consequent contraction of the future horizon. Prior studies have reported limited future perspectives in adults with CHD, often framed within broader explorations of participant experience. For example, Callus and colleagues (2013) noted participants’ difficulties in future planning due to perceived uncertainty and pervasive fear of death, which also affected interpersonal relationships. Berghammer et al. (2015) documented participants’ awareness of progressive physical decline and limited life expectancy. The experience of a foreshortened and uncertain future is a common theme in the literature on cardiac patients broadly, not limited to adults with CHD (e.g., Broschmann, Nebel, Krivzov, et al., 2025; Forslund et al., 2014; Haydon et al., 2017; Ketilsdottir et al., 2014; Merritt et al., 2017). Notably, in young adults with CHD, concerns related to family planning and reproductive capacity are particularly salient. Our data illustrate that young women with CHD frequently struggle with the decision to bear children, often in opposition to medical advice, due to fears of maternal or neonatal mortality or premature death precluding active parenting.

Conversely, early and ongoing confrontation with illness and mortality can engender a sense of accelerated maturity or posttraumatic growth relative to peers (Tedeschi & Calhoun, 1995). However, this maturity is not consistently experienced; some participants simultaneously report periods of emotional lability and health-related irresponsibility. A sense of increased maturity has been identified in previous research; Callus et al. (2013) found that adults with CHD perceived themselves as emotionally older than their peers, and Berghammer et al. (2015) reported similar findings in adults with univentricular hearts. This contrasts with older adults who develop cardiac disease later in life, who often report physical premature aging without concomitant feelings of increased maturity or wisdom (e.g., Broschmann, Nebel, Krivzov, et al., 2025; Ryan & Farrelly, 2009).

New and noteworthy findings of this study include the experience of temporal inflexibility and specific coping strategies for managing adverse temporal experiences. Participants described a perceived burden stemming from temporal rigidity and loss of spontaneity, primarily attributable to necessary medical appointments and lifestyle modifications. Coping mechanisms frequently involved cultivating a constructive relationship with time, manifested in a more mindful engagement with the present, a distancing from a stressful past, and an acceptance of a threatening future. This aligns with prior findings in adults with CHD (Berghammer et al., 2006) and other cardiac populations (Broschmann, Nebel, Krivzov, et al., 2025; Haydon et al., 2017; Li et al., 2019), emphasizing heightened present-moment awareness that permeates all temporal dimensions.

This work constitutes an initial foray into the temporal experience of adults with CHD. Future research should aim to deepen understanding in this domain, particularly among older patients, as advances in medical care have extended life expectancy considerably. Further studies should also explore temporal experience across varying disease severities and entities. Lastly, sex- and gender-specific dimensions warrant focused investigations, especially regarding generativity, reproduction, and family planning in young adults with CHD.

Limitations

One limitation of the study was the limited heterogeneity of the participants: Only one participant had an Eastern European background, and no participants identified outside of cisgender heterosexual norms, indicating limited diversity in these dimensions. Another limitation is the lack of comparability with older adults with CHD, as this study exclusively examined young adults. Future research should also place greater emphasis on specific subgroups, such as pregnant women with CHD, in order to more thoroughly address issues of gender and generativity in the context of family planning in CHD.

Conclusion

The study has both strengths and limitations. Strengths include methodological rigor, a relevant clinical cohort, and a balanced gender distribution. Limitations involve limited heterogeneity with respect to migration background and sexual orientation. Overall, we identified relevant novel aspects: The findings indicate that patients with CHD exhibit characteristic temporal experiences. These individuals typically do not perceive themselves as different from the outset. Instead, surgeries and hospitalizations are initially integrated into their understanding of normality. It is only through biographical disruptions—such as life-threatening events or social exclusion—that a gradual awareness of their difference begins to emerge. This awareness is often accompanied by the experience of a shortened and uncertain future horizon, which places particular strain on patients, especially during transitional life phases such as career planning, pregnancy, or family formation. The lack of temporal flexibility and spontaneity caused by the illness is also perceived as burdensome, as it can result in feelings of exclusion from social participation. Among the more positive aspects reported by the adults with CHD is a perceived sense of maturity, which extends beyond the feeling of premature aging associated with physical limitations. Many participants also expressed a desire to adopt a different relationship with time, especially by cultivating a more conscious awareness of the present. Compared to individuals who acquire CVD later in life, adults with CHD demonstrate distinct temporal experiences, as shown in this study. These findings contribute to a deeper understanding of the lived experience of adults with congenital heart disease and may inform shared decision-making processes in clinical practice with this vulnerable patient group. Finally, we suggest that the perception of temporality may play a critical role in shaping health-related quality of life and the capacity to live well with CVD.