Навигация потерь и рост хронических заболеваний: исследование по вопросу о физической активности и благополучии.

Introduction

The United Nations' third global goal aims to ensure healthy lives and promote well‐being for all ages, with a focus on chronic diseases and mental health [ 1 ]. This goal is challenged by the rising incidence of life‐threatening chronic diseases, requiring immediate action [ 2 , 3 ]. Promoting physical activity in healthcare is an effective measure, as exercise, defined as planned, structured and repetitive physical activity [ 4 ], is clinically recognised for its significant physical and mental health benefits in treating and rehabilitating chronic diseases [ 5 , 6 , 7 ].

While research on effective physical interventions is extensive [ 8 ], there is a noticeable gap in exploring the embodied meaning of physical activity to develop comprehensive care and nursing strategies. This oversight is problematic given that nursing and caring are crucial components of healthcare aiming for outcomes of well‐being.

Existential scholars have long argued for the importance of exploring the embodied experience of illness, rather than focusing solely on a biomedical perspective [ 9 , 10 , 11 ]. For instance, the French phenomenologist Maurice Merleau‐Ponty's posits that our bodily being‐in‐the‐world is foundational to all experience and knowledge. He argues that we do not just have bodies, but we are our bodies [ 12 ]; hence, our body and mind cannot be separated as in bio‐medicine.

Similarly, the body cannot be separated from the experience of well‐being. Lifeworld researchers Les Todres and Kathleen T. Galvin provide an existential theory of well‐being as the interlacing of dwelling and mobility, guided by the notion of ‘homecoming’ from philosopher Martin Heidegger [ 13 ]. They define dwelling as a sense of ‘homeness’, a sense of peace and acceptance and mobility is in essence all the ways that people access a sense of possibility. It is a feeling of flow and of moving forward. The deepest possibility of existential well‐being lies in the unity of dwelling‐mobility [ 14 ]. On the other end of the well‐being continuum is suffering and ‘homelessness’ a sense of disruption and unfamiliar experience of existence.

In this context, illness can be understood as a disruption of the unity between dwelling and mobility, leading to a sense of dislocation or ‘homelessness’ within one's own body and world. This disruption challenges the embodied sense of well‐being by fracturing the familiar ways in which individuals engage with their environment and themselves. Illness, therefore, is not just a physical or biological condition but an existential experience that impacts how a person navigates life, their relationships and their sense of purpose. The restoration of well‐being, from an existential perspective, involves re‐establishing a sense of homecoming, where the individual can once again find harmony between dwelling in the present and moving towards future possibilities. This theoretical framework highlights the profound interdependence between body, mind and existential meaning in the experience of health and illness [ 13 , 14 ].

This paper aspires to enhance the scientific understanding of caring in relation to well‐being by examining the embodied nexus between chronic illness, physical activity and overall health. In doing so, it seeks to bridge the gap between biomedical interventions and the care perspectives that are essential to holistic healthcare. Care, which encompasses emotional, physical and psychological support, plays a pivotal role in promoting well‐being, particularly for individuals with chronic conditions. Accordingly, this study acknowledges the importance of patients' lived experiences, thereby focusing on the intricate interplay between chronic illnesses, physical activity and well‐being. By uncovering new insights from patients' perspectives, the study aspires to equip nurses and other care professionals with knowledge that can advance healthcare practices and ultimately foster better health and well‐being.

The Study

Aim

To investigate the lived experiences of being physically active in everyday life with chronic and life‐threatening illnesses to understand how the meanings attributed to chronic illness, physical activity and well‐being intertwine.

Methodology and Design

Phenomenology aims to describe pre‐reflective meaning, while hermeneutics provides a process for interpreting and understanding the meaning of a phenomenon [ 15 ]. In this study, we integrated phenomenology with hermeneutical concerns to interpret meaningful phenomena using Manen's lifeworld existentials of lived thing, lived body, lived time, lived space, lived other and lived technology. According to Van Manen, these existentials form the structure of every person's lifeworld.

The study was designed as a qualitative interview study to capture participants' lifeworld experiences in a narrative form, providing a deeper understanding of the significance people with chronic illnesses assign to physical activity [ 16 ].

Research Team

This study was conducted within a Danish interdisciplinary research context. Postdoc Stine G. Roikjaer, associate professors Charlotte Simonÿ and Malene Beck, all with clinical nursing backgrounds and extensive phenomenological research experience, collaborated with medical doctor Professor Nasrin Asgari and physiotherapists Associate Professor Lars Tang and Professor Søren Skov. Together, they bring clinical and research expertise in cardiology, neurology, geriatrics, rehabilitation and well‐being, but acknowledge that their preunderstanding lacks the patient perspective.

These diverse clinical and academic backgrounds inevitably shape the researchers' perspectives and interpretations. To manage this influence, the team engaged in continuous reflexivity throughout the research process. This reflexive approach ensured that while their clinical expertise informed the study, they remained open to the participants' experiences, allowing the findings to be driven by the data rather than by preconceived notions. Collaboration among the interdisciplinary team also helped to balance and challenge individual biases, promoting a more comprehensive and nuanced understanding of the research findings.

Participants

We included participants living with chronic diseases to gain deeper insight into the lived experience of illness and patientology. The participants presented different diseases such as multiple sclerosis (MS), Alzheimer's disease (AD) or ischaemic heart disease (IHD). These diseases where chosen for two primary reasons: (1) the diseases are significantly different on multiple levels such as pathogenesis and clinical symptoms affecting everyday life (see Table  1 for an overview) and (2) the positive effects on symptoms, progression of disease and quality of life from physical activity is well documented for these diseases [ 5 ].

TABLE 1 Key characteristics and subjective barriers to physical activity in three chronic illnesses [ 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 ]. Multiple sclerosis Alzheimer's disease Ischaemic heart disease
Age of Debut: 20–30
Age of Debut: 65+
Age of Debut: 45–55
Global Prevalence: 2,800,000
Global Prevalence: 51,624,000
Global Prevalence: 126,000,000

Pathogenesis and Key Characteristics:

Believed to be an autoimmune disease, though the pathogenesis is complex.
Characterised by episodes of relapses (neurological deficits), with clinical manifestations such as reduced muscular strength, coordination, energy and cognitive function.
The illness trajectory carries uncertainties about symptoms, future degeneration and physical/mental functioning, which may lead to a sense of lost self.


Pathogenesis and Key Characteristics:

A dementia disorder causing brain cells to die.
Likely originates from a combination of genetic, lifestyle and environmental factors.
Leads to personality changes, memory loss and difficulties with concentration and thinking, affecting everyday decision‐making (including decisions about physical activity).


Pathogenesis and Key Characteristics:

Caused by narrowed arteries that supply blood to the heart muscle.
Likely arises from both environmental (e.g., physical inactivity, smoking and high‐fat diet) and genetic factors.
Experiences of acute cardiac events are often described as involving pain, vulnerability and loss of control, posing an existential challenge regarding one's future.


Subjective Barriers to Physical Activity:

Fear of attacks.
Beliefs that physical activity may be pointless.
Overwhelming fatigue.


Subjective Barriers to Physical Activity:

Difficulties following instructions.
Struggling to understand the purpose of the activity.


Subjective Barriers to Physical Activity:

Fear of death or pain.
Perceived physical restrictions due to the condition.

Key characteristics and subjective barriers to physical activity in three chronic illnesses [ 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 ].

Pathogenesis and Key Characteristics:

Believed to be an autoimmune disease, though the pathogenesis is complex.

Characterised by episodes of relapses (neurological deficits), with clinical manifestations such as reduced muscular strength, coordination, energy and cognitive function.

The illness trajectory carries uncertainties about symptoms, future degeneration and physical/mental functioning, which may lead to a sense of lost self.

Pathogenesis and Key Characteristics:

A dementia disorder causing brain cells to die.

Likely originates from a combination of genetic, lifestyle and environmental factors.

Leads to personality changes, memory loss and difficulties with concentration and thinking, affecting everyday decision‐making (including decisions about physical activity).

Pathogenesis and Key Characteristics:

Caused by narrowed arteries that supply blood to the heart muscle.

Likely arises from both environmental (e.g., physical inactivity, smoking and high‐fat diet) and genetic factors.

Experiences of acute cardiac events are often described as involving pain, vulnerability and loss of control, posing an existential challenge regarding one's future.

Subjective Barriers to Physical Activity:

Fear of attacks.

Beliefs that physical activity may be pointless.

Overwhelming fatigue.

Subjective Barriers to Physical Activity:

Difficulties following instructions.

Struggling to understand the purpose of the activity.

Subjective Barriers to Physical Activity:

Fear of death or pain.

Perceived physical restrictions due to the condition.

We invited 23 people based on the inclusion criteria of: (1) diagnosis of MS, AD or IHD, (2) age ≥ 18 years and (3) willingness and ability to share experiences. The selection process ensured that participants could meaningfully share their lived experiences, with special consideration for AD patients. During initial clinic visits, physicians conducted clinical assessments, such as the Mini‐Mental State Examination [ 29 ], to evaluate their ability to participate in the study.

All agreed, but one AD participant withdrew post‐interview, so his narrative was excluded. Participants were approached by a nurse or physiotherapist during ambulatory visits and given a flyer explaining the study and introducing the first author, SGR. They discussed the proposal with friends or family before SGR called them to invite participation and answer questions. After reviewing data saturation and evaluating sampling variation, we introduced a second recruitment round focused on male participants. Informed consent was obtained during face‐to‐face interviews. In total, 22 participants with chronic illnesses like MS, AD and IHD took part (see Table  2 ).

TABLE 2 Participants (8 males and 14 females aged 33–84 years). Multiple sclerosis Participants M1 M2 M3 M4 M5 M6 M7 M8 Sex ♀ ♂ ♀ ♀ ♀ ♀ ♂ ♂ Age 48 61 45 33 44 46 48 40 Alzheimer's disease Participant A1 A2 A3 A4 A5 A6 A7 Sex ♂ ♀ ♀ ♀ ♀ ♀ ♂ Age 79 82 75 71 75 73 81 Ischaemic heart disease Participant H1 H2 H3 H4 H5 H6 H7 Sex ♀ ♂ ♀ ♀ ♀ ♂ ♂ Age 55 67 72 84 78 40 63

Participants (8 males and 14 females aged 33–84 years).

Data Collection

The first author (SGR) conducted individual semi‐structured interviews in a narrative manner within the time frame spanning from August 2022 to December 2022, accumulating just under 20 h of audio‐recorded dialogues, ranging from 26 to 89 min. The phenomenological emphasis on lifeworld and everyday experiences guided the decision to conduct the interviews predominantly within the participants' domestic settings, with only three exceptions accommodated in a designated meeting room at the hospital in response to participants' requests. This meticulous selection aimed to foster a comfortable and secure environment conducive to eliciting narratives from the fabric of everyday life.

Drawing inspiration from a recent scoping review [ 30 ] and theoretical guidance [ 31 ], the semi‐structured interview guide was crafted to reflect a phenomenological orientation, with Van Manen's lifeworld existentials serving as a foundational framework for inquiry. Given the study's focus on lived experiences of physical activity among people with chronic illnesses, the interviewer recognised the significance of delicately balancing the exploration of illness narratives while maintaining a focus on the nuanced experience of being physically active [ 32 ]. This delicate approach was operationalised by initiating interviews with a ‘grand tour’ question, prompting participants to provide a brief introduction to themselves and their current circumstances, thereby setting the stage for a more immersive narrative exploration of what it means to be physically active [ 31 ].

Following Van Manen's guidance, attentive attunement and open‐mindedness were crucial during the interviews, extending beyond spoken words to include body language and emotions [ 33 ]. The interviewer (SGR) showed conscious sensitivity to both the context and the individual, allowing interviewees to construct their narratives organically. This approach sometimes involved purposeful silences and thoughtful follow‐up questions to encourage a richer exploration of lived experiences. However, this sensitivity not only ensured a rich narrative but also safeguarded an ethically sound approach when conducting research with people experiencing cognitive decline. For instance, during an interview with a participant with AD, she suddenly became agitated and frustrated. In response, SGR lowered her voice and gently asked if the participant would prefer to continue at another time or cancel all together. She replied, ‘No, but we need to do this together’. (A5) SGR smiled and reassured her, saying, ‘We will’, then adjusted the interview by asking more structured questions. This approach helped the participant feel more at ease, allowing her to share her experiences more comfortably and free.

Thematic Data Analysis

The phenomenological analysis approach employed in this study is characterised as reductive, distinct from inductive or deductive methodologies. Within the framework of interpreting Van Manen's existential lens, this approach serves as a means to distil lived experience to its essence [ 33 ].

To initiate the analysis, the first author listened to each interview recording in full, leveraging her unique perspective as the interviewer to re‐engage dynamically with the content. Using van Manen's holistic reading approach, the recordings were transcribed and integrated into a single text to address the question, ‘What is it like to be physically active when living with chronic illness?’ Following this, SGR employed a selective reading approach to identify significant clusters related to the study's central inquiry. In the final phase, each cluster was examined in detail to uncover thematic expressions and phrases reflecting the phenomenological significance of being physically active. SGR grouped these into themes, which were validated and refined through collaborative discussions with co‐author CS, ensuring analytical rigour (see Table  3 ). Nivivo [ 34 ] was used as data management tool during the analysis process.

TABLE 3 An example of the analytical process guided by Van Manen. Wholistic reading approach Selective approach Detailed approach Sub‐theme Major theme Illness changes how people experience their body and themselves
‘I have always used my body, a strong body, I was the one everyone could lean on and now—well now the tables have turned. I struggled with finding an identity in that’ (M6)
‘MS has changed me, has changed my person. I don't know me anymore’ (M3)
I have lost my sense of self Loss of self Losing oneself determined by bodily impact

An example of the analytical process guided by Van Manen.

‘I have always used my body, a strong body, I was the one everyone could lean on and now—well now the tables have turned. I struggled with finding an identity in that’ (M6)

‘MS has changed me, has changed my person. I don't know me anymore’ (M3)

Rigour

Trustworthy research is imperative regardless of ontological beliefs, requiring rigour to evaluate quality and value [ 33 ]. Pereira (2012) argues that phenomenological research must address experiential and methodological concerns, ensuring respect for the philosophical assumptions underlying the method [ 35 ]. A general principle in this phenomenological‐hermeneutic study was open‐mindedness to the wonder of the phenomenon [ 31 ], as detailed in the data collection and analysis sections.

Driven by our pursuit of participants' lived experiences, we sought a sample reflecting nuanced understandings and narratives. This emphasis on subtleties guided both our sample size and selection, leading us to adopt a dynamic purposeful sampling approach [ 36 ]. Rather than seeking broad representativeness, we continually invited new participants until we had a deep understanding of living with chronic illness and engaging in physical activity. This careful, ongoing process ensured each participant's perspective enriched the exploration of the phenomenon.

Ethical Consideration

Ethical considerations followed the International Council of Nurses' code of conduct [ 37 ] and the Helsinki Declaration [ 38 ]. All participants gave informed consent verbally and in writing. Special attention was given to participants with AD due to their cognitive deficits [ 39 , 40 ]. Participation discussions included patients, family carers and physicians to ensure capability. Participants were assured of confidentiality and anonymity, with the option to withdraw until publication. The study is registered with the Danish Data Protection Agency (REG‐115‐2021) to ensure secure data handling. Approval from the Health Research Ethics Committee for Region Zealand was not required due to the qualitative research design.

Findings

The analysis identified two major themes with supporting sub themes: (1) Losing oneself determined by bodily impact: Loss of embodiment, Loss of familiar life and Loss of a promised future; (2) Physical activity as a pathway to existential growth: Finding relief through physical activity, Claiming control through physical activity and (Re)connecting to the self and others through physical activity. In the following, we present themes with short narrative descriptions, including selected quotes from interviews, with the aim of portraying the meaning of being physically active when living with chronic illness from the data material.

Losing Oneself Determined by Bodily Impact

While the primary focus of our study centred on the lived experience of being physically active, it became evident that participants consistently interwove narratives of loss shaped by their chronic or life‐threatening illnesses. These experiences, intricately intertwined with the broader context of being physically active, spanned across past, present and future dimensions, encapsulating embodied sentiments of gratitude, regret, anger and shame. The inseparability of these narratives underscores the profound interconnectedness between the participants' encounters with physical activity and the multifaceted emotional landscape shaped by their illnesses.

Loss of Embodiment

A shared pattern of an altered self‐image is seen across participants' stories. These stories often depict an embodied experience. For example, a woman focuses on the body in her story of struggling with coming to terms with the illness: ‘I have always used my body, a strong body, I was the one everyone could lean on and now—well now the tables have turned. I struggled with finding an identity in that’ (M6). This depiction of the bodily experience shows how body and identity are intertwined. When she speaks of a strong body that everyone could lean on, it can be understood literally as her standing strong and tall for others to lean on when tired. However, it can also be understood as a character trade. That she was mentally strong and available if friends needed to unload their troubles.

Another such story of the body is portrayed by a middle‐aged man. He keeps circling around the idea of control throughout his interview. He shares stories from a wild and uncontrollable youth that was tamed by a love for boxing. Through a very controlled diet and exercise, he built the physical body and mental strength he needed. After his heart attack, he suddenly lost that control: ‘I remember sitting on the bed crying of pain. An unbelievable pain’ (H7). His general focus on control led to the understanding that this pain was not only a bodily pain, but also an embodied pain of feeling unable to be a man in control.

Others describe a different kind of lost bodily sensation. One elderly woman reminisces about a past life filled with the joy of movement—whether through structured exercise like gymnastics or the unstructured pleasures of gardening. Back then, physical activity was a source of both vitality and well‐being: ‘Now, however, it has been reduced to pliability exercises in the morning performed merely to get my blood pumping’. She continuous: ‘It's kind of an automatic movement now’ (A2). The connection between movement and embodied well‐being and joy has faded, replaced by a mechanical routine that nevertheless seems familiar.

Loss of Familiar Life

For others, an experience of losing the life they knew is dominating. Some participants had recently experienced a serious health event, which prominently shaped their accounts of physical activity. Often the realisation of almost losing their life is still dominating their experience. For some, this seems to keep them stationed in that present moment; for others, it seems to motivate them to act and push on.

A woman in her 50s describes how the fear of death has left her unable to move forward. She uses the word ‘circus’ (H1) to depict her overwhelming struggle with illness, work, caseworkers and rehabilitation, consuming all her time and energy. This relentless circus leaves no space for truly ‘living’ (H1), as she did before her heart event. She longs for outdoor activities like fishing and horseback riding but feels that the chaos surrounding her recovery stands in the way of healing and reclaiming her sense of being alive. Another woman (H3) shares a similar struggle. Just 2 weeks after her heart event, she had to give up badminton and senior gymnastics, leading to tears when discussing physical activity and community sports. For her, physical activity is tied to her social life, and its absence makes her feel isolated and distressed. She feels conquered by illness and scared to participate in any movement.

A young man in his 40s, with a military background, blames himself for his current health issues. Once strong and fit, he now feels ashamed for neglecting his health after leaving the army, leading to his decline through a bad diet, smoking and an unhealthy lifestyle. ‘managed to tear my life apart in four years with a bad diet, too much smoking and an unhealthy lifestyle’ (H6). Despite his shame, he is determined to take action.

Loss of a Promised Future

Other participants experience shame tied more to social guilt than personal guilt. They fear the future and grieve their inability to participate in everyday activities with their children. A new mother (M4) tears up discussing her shattered vision of running alongside her son learning to ride a bike, while a father (M7) doubts he will be able to play soccer with his children. Physical activity with their children is integral to their beliefs about parenthood, and the fear of losing mobility is linked to the shame of not fulfilling their parental roles. Both express a desire to delay the next attack and loss of mobility, recognising physical activity as a way to achieve this.

‘I want my children to remember me as a happy dad—as active. If I die one day, I don't want them to say—he was always in a bad mood. It's this damn illness—I don't want it to overshadow everything’ (M7), the young father says with a voice filled with frustration. He describes how the disease impacts his physical and emotional well‐being, as his body stiffens, his energy dwindles and his mood worsens.

He highlights his need for support, recalling how he initially felt safe and motivated while working with a local therapist who helped guide and progress his exercises, which were essential in managing his MS. However, with healthcare cuts, that crucial support was taken away. Although he acknowledges that he could go to the gym on his own, he feels insecure and unmotivated without the therapist's guidance, deepening his sense of frustration and helplessness.

Physical Activity as a Pathway to Existential Growth

The stories shared by participants offer a nuanced exploration of the interplay between physical activity, illness and existential well‐being. These qualitative accounts reveal key themes that collectively contribute to a profound understanding of the transformative impact of engaging in physical activities in which the experience of loss was reduced and a connection to oneself was increased.

Finding Relief Through Physical Activity

Enjoying nature seems a cherished routine to find relief from illness. A frequent description is how being outdoors provides existential relief from illness worries, with sensations like wind, sun and rain bringing comfort. One participant enjoys slow and mindful walks. She calls her walks a ‘mental sanctuary’ that offers clarity and presence, describing exercise as an ‘investment in me’ (M5).

Another, shares how she finds relief in spending time in her garden: ‘What can I say—it's like a breath of fresh air… In those moments, I don't dwell on whatever else might have been bothering me. It's as if—well, it just doesn't seem that important anymore’ (A2).

One elderly woman describes how walking along the beach with her husband brings her a deep, familiar comfort. ‘Well, it's well‐being, isn't it?’ she muses. ‘And sometimes also a sense of—now I'm tired—I overdid it’ (A5). In these moments, movement is not just physical activity but an experience—a delicate balance between ‘just right’ and ‘too much’ that shapes her connection to her own body.

Beyond its emotional and existential benefits, physical activity also serves as a way to manage symptoms and maintain a sense of strength and health. As one participant explains: ‘I need to exercise, otherwise I feel all these side effects. My body feels muddy and disturbed, like influenza symptoms’ (M1). Movement, then, is not just a source of well‐being but a necessity—one that helps counteract the discomforts of illness and sustain a sense of bodily control.

Many participants report a positive mood change when physically active. A woman in her late 40s (M1) laughs about her trampoline jumping class, describing the hilarity of trying to synchronise with 12 other women. Similarly, a man nearing retirement chuckles while recalling the chaos of line dancing mishaps (H7). This joy extends beyond the activity itself, bringing laughter even in storytelling.

Whether it is a mindful walk outdoors or a joyful dancing session with others, these are often described as a part of a cherished routine that creates a place away from illness both physically and mentally, where time seems different, and the participants can let go of their illness—for a while.

Claiming Control Through Physical Activity

This element of an embodied and mindful relief from illness enables not only joy but also confidence. A woman in her mid‐40s with restricted mobility describes how horse riding brings back a sense of normalcy and confidence. She talks about how she is often angry with herself for ‘not being able to’ (M3) do things properly. She cannot help with housework, she cannot cook without dropping everything and making a mess and she cannot walk without mobility aids. Yet, when she is riding ‘I find myself thinking—this I can do’ (M3) and for a while she feels free of illness and in control again.

Another participant speaks of illness as a dark cloud that keeps following him and ‘it's just a matter of when the lightning and thunder start again’. Nevertheless, when he engages in physical activity and pushes beyond pain and fatigue, he feels that he reclaims control: ‘I am in charge, not the illness, and I simply need to go beyond what the illness might allow’ (M7).

This sentiment is echoed by others, including the young man with a past military career. Despite feeling ashamed and angry, he is determined to make changes, noting how his illness has motivated his entire family to exercise. Other participants also spoke of this ‘wake‐up call’, with some feeling both responsible for and capable of changing their fate. One man describes his encounter with death as a signpost to continue living: ‘I'm simply not done with living’ (H7).

(Re)connection to Self and Others Through Physical Activities

These empowering feelings associated with being physically active seem to reconnect the participants with their past, their sense of self and the social world around them.

Elderly participants often share past experiences with gratitude, focusing on joyful memories of vacations, sports and accomplishments. For example, an older woman reminisces about her days as a local badminton champion, recalling the joy of community, travel, and parties: ‘My age has put a limit on being physically active, but that is not something I resent. I can only say that I had a good life—no one should feel sorry for me—I have wanted for nothing’ (H4).

An older woman exemplifies self‐connection. She and her husband were avid hikers, exploring the world and meeting new people. She shares pictures, souvenirs and medals from their adventures. Though she has given up gymnastics and cycling due to confusion, she still takes short, familiar walks in her neighbourhood, where she is known and can be guided home if needed: ‘as long as I can walk, I am okay’ (A3) she says. Her emphasis on ‘I am’, interlaces with the activity of walking. As long as she walks, she is herself. In a way, these short walks still serve as a way of connecting with the world and people around her.

These examples show how a life story of being physically active is still part of how these participants portray and understand themselves in present time.

A connection to others is also depicted in many of these stories of physical activity. We have shared a story of a woman that finds joy and relief in her jumping class. She explains how this is not only due to a physical aspect, but also to the social room during exercise. A social room that makes it easy to talk about and ease troubled thought: ‘If I didn't have my exercise, I think I would turn sad and cross, but I recon it is just as much the social aspect. If I have a shitty day, then that gets turned around on the trampoline’ (M1).

An older man lets known that he is no longer allowed to drive as his cognitive function is in rapid decline, but he still needs to visit his old friend and colleague, so he walks (A1). During the interview, he is asked if physical activity holds other meanings, but for him physical activity is merely a way to connect to the world around him. This is echoed by another participant who finds physical activity uninteresting ‘Isn't it terrible to have to say it like that? I find it uninteresting’. (A6) She explains that for her it is a means to get out and ‘talk to other people’.

Some use physical activity to grow in a new life situation, like a man who calls his illness an ‘uninvited life companion’ (M8). Illness motivates action and physical activity, leading to personal journeys. A young woman describes a transformative journey from her old self to a new one: ‘not knowing whether I will become a moth or a butterfly, I have to move on’ (M6). She shares stories of depression and frustration but decided to take action by calling friends to swim and go to the gym. This sparked further motivation, and now she feels confident in accepting and conquering her illness.

Discussion

Our study contributes to the ongoing discourse within the nursing and care community by shedding light on the profound implication of illness experiences among people with various diseases. The findings underscore that being ill involves a transformative process, wherein people grapple with a sense of losing themselves, fundamentally altering their perceptions of their bodies and their ‘being in the world’. This find is strengthened by similar studies [ 41 , 42 ]. Conversely, our research suggests that engaging in physical activity is meaningful as it constitutes a deeply embodied experience that transcends boundaries of time and space. It not only enhances physical function but also fosters existential growth, empowering individuals to regain control and reconnect with their sense of self. In other words, it facilitates well‐being. This is a universal finding across our study samples and deserves further discussion, especially within the context of caring practices.

To elucidate this meaningfulness and well‐being observed in our findings, we draw on an existential theory of well‐being as the interlacing of dwelling and mobility by Todres and Galvin [ 13 ]. To deepen our understanding even further, we also incorporate the philosophical insights of Merleau‐Ponty, a prominent figure in existential phenomenology. Merleau‐Ponty's theory helps us appreciate how chronic illness can disrupt an individual's bodily intentionality—the innate capacity of the body to engage with the world in meaningful ways [ 12 ]. From a care perspective, this disruption is critical because it not only affects physical abilities but also challenges patients' sense of identity and belonging.

We identified a profound embodied experience of loss of familiar life and an existential battle to accept a new reality and possible future. For some participants, this was voiced as an existential battle between life and death, echoing Merleau‐Ponty's notion of the body as the primary site of experiencing the world. This resonates with experiences reported from an experiential study of people with chronic heart failure, where the awareness of mortality prompted a longing for relief from suffering, a longing so prominent that they sometimes wished for death [ 43 ]. From a caring perspective, the inability to act due to illness‐induced constraints can be understood as a form of mobility suffering, where participants feel stuck or trapped in a life that seems to have no forward movement, as Todres and Galvin suggest [ 14 ]. Our findings indicate that physical activity is a caring act that can help alleviate this suffering, offering participants a sense of liberation and a ‘way home’ to themselves. For instance, slow and mindful walks helped participants be present, allowing them to let go of anxiety and experience moments of completeness. This reflects well‐being as a state of temporal dwelling, where individuals experience peace and satisfaction, even amidst the challenges of illness [ 14 ]. This aligns with Merleau‐Ponty's view that our bodily engagement with the world is central to our sense of being.

In addition to this temporal dwelling, physical activity also plays a critical role in restoring participants' sense of identity. For instance, when a woman uses her walks to confirm her sense of ‘I am’. Or a woman uses horse riding to dismiss her lost bodily confidence and bring her a feeling of ‘I can’. These examples underscore the body's role in shaping our experiences and perceptions, highlighting Merleau‐Ponty's assertion that the body and mind are inseparable.

From a clinical and care standpoint, these findings demonstrate that physical activity is more than a rehabilitative tool; it is a powerful means through which participants can regain a sense of control over their lives, even in the face of illness. By re‐establishing their bodily intentionality, physical activity enables them to transcend the limitations imposed by their condition. Although these insights are grounded in existential and phenomenological philosophy, they have practical implications for healthcare. According to Todres and Galvin, understanding suffering provides a human capacity for care, while focusing on well‐being provides a direction for care [ 13 ]. Our study underscores how being physically active in the context of chronic illness can substitute the experience of loss and facilitate existential growth and well‐being. This reinforces the argument that meaningful physical activity should be recognised as a potent element in care interventions with the aim of well‐being, extending beyond the confines of the biomedical paradigm. Consistent with phenomenological understandings, well‐being is both a way of ‘being in the world’ as well as how this way of ‘being in the world’ is experienced. Thus, we can enhance well‐being by adopting a lifeworld‐led approach to care [ 13 ], where physical activity is integrated into a holistic framework that recognises both the physical and existential dimensions of the patient's experience.

In summary, this research calls for a shift in how physical activity is approached in care practices. By recognising its potential to facilitate existential growth and alleviate suffering, we advocate for a care‐led perspective that embraces physical activity as a powerful means of promoting well‐being, rooted in a holistic understanding of the individual's lived experience.

Limitations

There are several limitations to this study that warrant discussion. First, the timing of interviews varied across groups: Participants with IHD and AD were recruited soon after their diagnosis, whereas those with MS had lived with their illness for a longer period. This discrepancy likely shaped the direction of their interviews; however, from a phenomenological perspective, varying insights and experiences can reveal additional depths of meaning and bring us closer to the phenomenon under study. Our findings emphasise that physical activity holds meaning for individuals with chronic or life‐threatening illnesses regardless of when their diagnosis occurs.

Second, our reliance on a phenomenological analysis grounded in Van Manen's existential framework [ 32 ] is intentionally reductive, as it aims to distil lived experiences to their essential elements. While this approach provides a deeper understanding of core experiences, it may also constrain broader contextual insights.

On a positive note, this study benefits from a sample size of 22, which is conducive to the purpose of in‐depth exploration rather than generalisability. Although meaning is personal and subjective and individuals are, as Auden says, ‘incomparable, unclassifiable, uncountable and irreplaceable’ (32 pg. 6), we contend that analytic generalisation [ 44 ] still allows us to identify similarities across diverse personal situations.

Finally, qualitative findings are always context dependent. We broadened our perspective through a heterogeneous sample, but the meaning of physical activity may still manifest differently in other settings and contexts.

Conclusion

In conclusion, our study reveals the profound embodied experience of engaging in physical activity amidst illness. Our findings highlight the meaningfulness of physical activity, offering not only physical benefits but also existential relief and a renewed sense of being. From a care perspective, physical activity serves as more than just a therapeutic tool; it becomes an essential part of the healing process that addresses the whole person—body, mind, and spirit.

Chronic illness disrupts individuals' perceptions of self, but physical activity emerges as a universal mechanism for reclaiming control and fostering existential growth across a spectrum of chronic and life‐threatening conditions. Our inquiry enriches the understanding of the existential dimensions of being physically active with chronic illness, contributing valuable lifeworld evidence to the discourse on holistic care.

We contend that physical activity is not merely a means to optimise functioning and reduce disability; it is a powerful avenue for relieving physical, psychological, social or spiritual suffering, leading to well‐being. Thus, meaningful physical activity has the potential to promote well‐being in the face of chronic or life‐threatening illness. Our study advocates for recognising the profound impact of meaningful physical activity in shaping the lived experiences of those with chronic and life‐threatening conditions. From a care perspective, it becomes clear that incorporating physical activity into clinical practice must go beyond mere physical rehabilitation; it must embrace the potential to relieve suffering and promote holistic well‐being. Furthermore, it calls for future research to explore how meaningful physical activity can be implemented within care strategies to relieve suffering and promote well‐being in a clinical setting for people facing life‐threatening chronic illnesses.

Author Contributions

All authors have contributed to discussions leading to this research question. S.G.R. have conducted every interview and steps in the analysis. C.S. and M.B. have contributed substantially with analysis and methodological issues. S.G.R. wrote the first draft of this manuscript, and every author has been involved in finishing the manuscript for publication.

Ethics Statement

Ethical considerations were based on the ethical code of conduct from the International council of Nurses and informed by the Helsinki Declaration. All participants gave their informed consent verbally and in writing. Further, ethical considerations included discussions on doing research with vulnerable patients. We were especially attentive to the participants with cognitive deficits. However, by discussing participation with both the patients, their family carers and their physician, we felt ensured that all participants were capable of participating on their own merit. Participants were assured that their participation was confidential and that they would be anonymised in all products from this study. Furthermore, we guaranteed that they could withdraw from the study up until publication of findings. Only one participant decided to do so. The study is registered with the Danish Data Protection Agency (REG‐115‐2021) safeguarding that all data are securely handled. Approval from the Committee on Health Research Ethics for Region Zealand, Denmark covering NSR Hospitals was not relevant due to the qualitative research design.

Conflicts of Interest

The study is part of both the IMAGINE and the Exercise First research programs. IMAGINE is based in the Center for Neurological Research in the Department of Neurology at Næstved, Slagelse and Ringsted (NSR) hospitals, but is a multidisciplinary and collaborative project across research units and hospitals in Region Zealand and the Region of South Denmark. The Exercise First program is a collaboration between Region Zealand and the Research and Implementation Unit PROgrez within the Department of Physiotherapy and Occupational Therapy at NSR hospitals. Dr. Skou is the developer of the Good Life with Osteoarthritis in Denmark (GLA:D) program, a not‐for‐profit initiative to implement clinical guidelines in primary care. The authors have no other conflicts of interest to declare.

Acknowledgements

The authors thank Mette Didriksen for taking the time to proofread the manuscript.

Funding: This project received grants from the Local Research Fund at Næstved, Slagelse and Ringsted Hospitals, Region Zealand (Exercise First), the Health Scientific Research Fund at Region Zealand and Danske Regioner og Sundhedskartellet (5506) and Health Cartels' Development and Research Fund. It was scientifically supported through the research group in the Centre for Neurological Research as well as the Research and Implementation unit PROgrez.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

References

Associated Data

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.