Togetherness in Couples Living With Chronic Obstructive Pulmonary Disease: An Interpretive Interview Study

ABSTRACT

Aim

To explore how persons with chronic obstructive pulmonary disease (COPD) and partners experience illness‐related changes in shared everyday life and intimacy, and how these changes affect well‐being.

Design

An interpretive phenomenological interview study.

Methods

Individual, in‐depth telephone interviews were conducted with persons with moderate to very severe COPD and partners recruited through a survey. Interviews were transcribed verbatim and analyzed using reflexive thematic analysis informed by hermeneutic phenomenology.

Results

Ten persons with COPD and five partners were included. One overarching theme was generated: Togetherness in light and darkness—transformation of couplehood when living with COPD, and three interrelated themes: (1) Living in sync and out of step—breathlessness slowed everyday life and limited shared activities and physical intimacy; (2) Holding on and holding back—togetherness was nurtured through emotional presence and challenged by protective restraint; (3) Becoming another we—meaning and continuity were sought amid loss, and shared identity was renewed or faded.

Conclusion

COPD transformed couplehood and intimacy, creating risks of disconnection while also opening possibilities for renewal and strengthened belonging. Breathlessness disrupted shared life, roles and identity; however, aligning pace and emotional presence fostered togetherness and well‐being for both partners.

Implications for Patient Care

The findings may guide nurses to initiate and navigate conversations about how COPD affects shared activities, intimacy and emotional connection, thereby facilitating couple‐centred care.

Impact

Relationship and intimacy changes in couples living with COPD remain largely overlooked. This study provides new insights into how breathlessness slows and reshapes shared everyday life, connection, and couple identity, highlighting aspects of well‐being that may otherwise remain unaddressed in clinical encounters.

Reporting Method

SRQR.

Patient and Public Contribution

Preliminary interviews with six participants refined the study focus from sexual health toward changes in shared everyday life and intimacy, and informed study design.

Summary

• What does this paper contribute to the wider global clinical community?

  • ○
    Provides the first in‐depth account of how COPD transforms couplehood.
  • ○
    Shows how breathlessness may slow shared everyday life and disrupt intimacy.
  • ○
    Highlights the importance of supporting emotional closeness in clinical encounters with couples living with COPD.

1. Introduction

Person‐centred care is central to contemporary healthcare, emphasizing the promotion of well‐being and a meaningful life in the context of illness (Eklund et al. 2019). Sexual health, an essential yet often neglected dimension of well‐being, encompasses physical, psychological, emotional, and social aspects of human life (World Health Organization 2006). Despite growing recognition of its importance, sexuality remains a sensitive and rarely addressed topic in clinical practice (Farver‐Vestergaard et al. 2022), revealing a persistent gap between person‐centred ideals and everyday care.

Among persons with chronic obstructive pulmonary disease (COPD), approximately 90% report that sexual concerns have never been discussed with a healthcare professional (Zysman et al. 2020). More broadly, older adults often hesitate to seek such support due to cultural beliefs and stigma (Ezhova et al. 2020), while barriers for nurses include limited knowledge, discomfort and organizational constraints related to initiating these conversations (Fennell and Grant 2019). While person‐centred care emphasizes what gives meaning to life and well‐being for each individual, the relational and emotional dimensions of sexual health for couples with COPD remain underexplored. Understanding how couples experience and respond to illness‐related changes in intimacy and relationship dynamics is therefore essential to advance nursing knowledge and to inform person‐centred approaches to care.

2. Background

Impaired sexual health is commonly reported among persons with COPD and has been associated with respiratory symptoms, such as breathlessness, coughing and fatigue, as well as reduced well‐being (Farver‐Vestergaard et al. 2022; Zysman et al. 2020). However, existing evidence predominantly focuses on sexual function and satisfaction among sexually active men, with erectile dysfunction reported in three out of four men with COPD (Farver‐Vestergaard et al. 2022). In contrast, women's sexual health remains sparsely explored, despite sexual dysfunction affecting half of women with COPD (Alcalá‐Rivera and Díez‐Manglano 2024). Consequently, the psychological, emotional, and social dimensions of sexual health in COPD remain poorly understood.

However, increasing breathlessness has been associated with reduced engagement in everyday physical activities, as persons with COPD adapt their daily lives to manage breathlessness (Kochovska et al. 2022). Breathlessness has also been associated with greater dissatisfaction with sexual life, with emotional functioning potentially contributing to this association (Olsson et al. 2026). A qualitative study further suggests that the multidimensional burden of COPD includes feelings of suffocation, fear of death, fatigue, and weakness, which may contribute to sexual difficulties, emotional distress, distancing within couples, and concerns about being unable to satisfy one's partner (Uzun et al. 2024). Burdensome symptoms, restrictions in daily life and social participation, stigma, and the unpredictability of disease progression may further affect sexual health and intimacy (Zanolari et al. 2023; Zysman et al. 2020). While some couples living with COPD preserve emotional intimacy through companionship (Ek et al. 2011), others experience loss of intimacy and fundamentally altered relationships (Lindqvist et al. 2013). Concerns about changing roles and loss of intimacy are among the most common psychosocial concerns among persons with COPD (Sørensen et al. 2024), highlighting the need for more holistic understandings of sexual health in COPD.

These challenges should be understood in the context of later life, where sexuality often remains meaningful, although its expressions may change with age. While sexual function and intercourse often become less central, intimacy, affection, and companionship often remain essential to well‐being (Towler and Graham 2019; Cismaru‐Inescu et al. 2022). Intimacy encompasses physical and emotional closeness beyond sexual activity alone and may be expressed through affectionate touch and conversations (Kelemen et al. 2019). In older couples, disease and physical decline may further lead one partner to assume caregiving responsibilities, potentially challenging intimacy and well‐being of both partners (Sinković and Towler 2019). COPD may therefore not only affect the individual but also reshape couples' shared everyday life and intimacy.

Yet, to support person‐centered care and promote well‐being, a deeper understanding is needed of how couples living with COPD experience changes in shared everyday life, relationship dynamics, and intimacy, and how such changes affect well‐being.

3. The Study

3.1. Aim

Addressing this gap, the present study aimed to explore the lived experience of COPD‐related changes in couple dynamics and intimacy, guided by the following research question:

How do persons with moderate, severe, or very severe COPD and their partners experience, respond to, and make sense of illness‐related changes in their relationship and intimacy, and how do these meanings affect well‐being in everyday life?

4. Methodology

4.1. Design and Theoretical Framework

Preliminary interviews with five patients and one partner conducted prior to the study shaped the study focus. Their reflections broadened the focus from COPD‐related impacts on sexual health toward changes in shared everyday life, including relationship dynamics and intimacy, as relational and emotional aspects were foregrounded over sexuality and sexual activity. These insights refined the study aim and design and informed the development of the interview guides.

Within an interpretivist research paradigm, we conducted an in‐depth interview study informed by hermeneutic phenomenology to gain a nuanced understanding of lived experiences (Kvale and Brinkmann 2015; Heidegger 2019). This interpretive approach enabled exploration of how intimacy and relationship dynamics were lived and expressed by those who experienced them and facilitated attention to deeper, often taken‐for‐granted aspects otherwise obscured in everyday life (Neubauer et al. 2019).

Reporting followed the Standards for Reporting Qualitative Research (SRQR) (O'Brien et al. 2014) (Data S1).

4.2. Study Setting and Recruitment

Participants were recruited among respondents to a Danish survey comparing sexual health in COPD with other chronic diseases who had consented to be contacted for follow‐up interviews. Purposive sampling was used among persons with COPD to ensure variation in COPD severity, sex, and age. Few partners of persons with COPD (hereafter referred to as ‘partners’) recruited through the survey met the eligibility criteria and consented to interview participation. Therefore, additional partners were recruited through participating persons with COPD, resulting in a convenience sample of partners. Consequently, variation among partners primarily reflected the variation achieved among persons with COPD.

4.3. Inclusion and Exclusion Criteria

Inclusion criteria for persons with COPD were: (1) being in a partnered relationship, (2) age ≥ 40 years, and (3) self‐reported COPD with disease severity classified from forced expiratory volume in 1 s, FEV₁ being: ‘moderate (50%–79%)’, ‘severe (30%–49%)’ or ‘very severe (< 30%)’ (GOLD 2024). Partners were eligible if their significant other met these criteria. Persons with cognitive or language impairments were excluded. Guided by the principle of information power (Malterud et al. 2016), we ended recruitment when data were considered sufficient, and no new initial themes were generated.

4.4. Participants

Of 42 eligible persons with COPD, 13 were contacted, and 10 participated (two were excluded because of confusion and uncertain COPD status, and one declined participation due to current acute disease). Of four eligible partners from the survey, two were unreachable and one declined; therefore, four additional partners, who were present during the recruitment of persons with COPD, were invited and included.

In total, 10 persons with COPD and 5 partners participated, including four couples (one same‐sex). Six persons with COPD were interviewed without including their partner, and one partner participated without the person with COPD. Their mean age was 72.3 years (range 57–81), and they represented all five Danish regions. Among persons with COPD, mean time since diagnosis was 9.3 years (range 5–16), and four reported comorbidities. Among partners, one had an above‐knee amputation related to cardiovascular disease, one had cancer without current symptoms, and one had knee osteoarthritis. All persons with COPD were retired, while two of the partners were employed. Participant characteristics are summarized in Table 1.

TABLE 1.

Characteristics of persons with COPD and their partners (n = 15) included in the interview study. ^a

ID	Sex	Age group	Education length b	Relationship type (duration) c	COPD severity d
Persons with COPD
1	Male	66–75	Short	Married (45–60 years)	Severe
2	Female	76–85	Long	Married (30–44 years)	Very severe
3	Female	66–75	Medium	Married (45–60 years)	Very severe
4	Male	76–85	Long	Living apart (1–14 years)	Very severe
5	Female	56–65	Medium	Married (30–44 years)	Severe
6	Male	76–85	Short	Married (45–60 years)	Moderate
7	Female	56–65	Medium	Cohabiting (15–29 years)	Moderate
8	Male	76–85	None	Married (45–60 years)	Moderate
9	Female	66–75	Medium	Married (15–29 years)	Severe
10	Male	56–65	Short	Cohabiting (1–14 years)	Severe
Partners
1	Female	66–75	Medium	Married (30–44 years)	Very severe
2	Male	56–65	Short	Cohabitating (15–29 years)	Severe
3	Female	76–85	None	Married (45–60 years)	Moderate
4	Male	76–85	Medium	Married (15–29 years)	Severe
5	Female	76–85	Medium	Married (45–60 years)	Moderate

^a Data are self‐reported during interviews with persons with chronic obstructive pulmonary disease (COPD) and their partners.

^b Education length was categorized as none (no completed post‐secondary education), short (vocational education and training), medium (bachelor‐level education), and long (master's degree or higher).

^c Relationship duration and time since COPD diagnosis are presented in years.

^d COPD severity is based on the most recent forced expiratory volume in 1 s (FEV₁), classified as ‘moderate’ (50%–79%), ‘severe’ (30%–49%), or ‘very severe’ (< 30%). For partners, the COPD severity of their partner with COPD is reported.

4.5. Data Collection

The two semi‐structured interview guides were pilot‐tested in three telephone interviews (two persons with COPD and one partner). Piloting confirmed the guides' usefulness and the suitability of a participant‐led conversational format (Kvale and Brinkmann 2015). Each guide comprised 14 open‐ended questions with suggested probes to elicit vivid, in‐depth data (Data S2).

Telephone interviews were chosen due to participants' frailty, geographical spread, and the sensitive nature of the topic. Individual rather than dyadic interviews were used to encourage authentic disclosure of experiences of intimacy and relational change (Zarhin 2018). For couples in which both the person with COPD and the partner participated, interviews were scheduled consecutively to reduce the risk of mutual influence.

All interviews took place between November 2024 and May 2025 and were conducted by the first author (L.M.G.). As an experienced interviewer, she sought to establish a respectful and open interview atmosphere and facilitated dialogue through active listening, intentional pauses, participant‐led prompts, and by echoing participants' own words (e.g., ‘It hurts. How so?’) (Kvale and Brinkmann 2015). These strategies supported responsiveness and co‐construction of authentic data. Interviews averaged 58 min (range 39–103), excluding introductions, and were audio‐recorded, transcribed verbatim, and pseudonymized by the interviewer.

4.6. Data Analysis

Hermeneutic phenomenology informed the interpretive orientation of the study (Heidegger 2019), while the analysis was conducted as an iterative process guided by the six‐phase reflexive thematic analysis (Braun and Clarke 2020). Meaning was understood as dynamic and situated (Neubauer et al. 2019).

Reflexive thematic analysis was selected because its situated, iterative, and meaning‐oriented approach aligns well with hermeneutic phenomenology and recognizes researcher subjectivity and reflexivity as resources for interpretive knowledge production (Braun and Clarke 2024). The analytic process supported systematic and transparent development of in‐depth themes, conceptualized as patterns of shared meaning united by a central concept (Braun and Clarke 2020). Themes were developed through deep engagement with the data and refined iteratively. Heideggerian notions of being‐in‐the‐world and being‐with further sensitized the analysis toward how changes in shared everyday life carried relational and emotional meaning and reshaped experiences of togetherness. Table 2 summarizes our application of the six‐phase analysis (Braun and Clarke 2020); however, engagement with the data was iterative rather than linear.

TABLE 2.

Iterative six‐phase reflexive thematic analysis of interview with persons with COPD (n = 10) and their partners (n = 5).

Phase	Description of conducted analysis
1. Becoming familiar with the data	All interviews were re‐listened, and all transcripts re‐read multiple times, while remaining open, curious, and receptive to what called for attention. Reflexive notes captured early impressions. Example: notes regarding thoughts on the meaning behind the participants withdrawal from joint walks or feelings of being more as a housekeeper than a spouse.
2. Coding and interpretive condensation	Initial inductive, flexible coding was performed on the first five transcripts, after which codes were refined and applied to the remaining data. Example: the code ‘shadow of COPD’ was split into ‘focus on light’ and ‘focus on darkness’. After (re)coding, coded extracts were collated to support interpretive condensations and to find patterns within and across participants.
3. Generating initial themes	Clustered codes and condensations examined for shared meaning (manifest and latent). Initial themes were generated as working concepts, and visual mapping was used to support conceptual coherence and refine boundaries. Example: ‘togetherness in shifting pace and presence’ was divided into behavioural and emotional aspects.
4. Developing and reviewing themes	Candidate themes revisited against full dataset for coherence, distinctiveness, and alignment with our research question. Example: themes were developed within three dimensions: behavioural pace, emotional presence, existential we‐identity. Variations and similarities across participants and themes were examined, and underlying tensions described. Example: silence was interpreted both as withdrawal and as attunement, with opposite outcome for connection.
5. Refining, defining and naming themes	Themes refined through interpretive writing and collaborative dialogue between authors and theme names chosen to reflect experiential tone and central organizing concepts. Example: ‘Holding back and holding on: Restraint and attunement in emotional presence’ captured how togetherness was anchored in being: through emotional presence yet shaped by the tension between restraint and attunement. At this stage, we also began developing the conceptual model to clarify how themes were interrelated, serving as an analytic synthesis.
6. Producing the analytic narrative	Final themes were integrated into a coherent interpretive account addressing our research question. Writing moved iteratively between themes, the conceptual model, collated data, and transcripts to ensure clarity, depth and illustrative quotations. Example: the conceptual model was refined in parallel, now serving as a communicative tool to illustrate the findings.

Note: The analysis was interpretative and guided by reflexive thematic analysis (Braun and Clarke 2020). It unfolded as an iterative process, where we moved back and forth across phases as we engaged with the data. Understanding was deepened by reflexive notes/writing, mind mapping and dialogue.

The analysis was led by the first author (L.M.G.). Her nursing background and work with the Excellent Nursing framework informed sensitivity to emotional and existential well‐being (Uhrenfeldt et al. 2025), while limited prior experience in respiratory care and sexual health research supported an open, curious stance that allowed participants' perspectives to guide the inquiry. She had no prior contact with participants. Reflexive notes captured initial preunderstandings and early analytical insights, supporting sensitivity to what called for attention and helping to explore emerging interpretations (Neubauer et al. 2019; Braun and Clarke 2020). Additionally, analytic writing and cross‐case discussions with co‐authors (I.F.‐V. and Y.F.), whose expertise in sexual health and psychosocial aspects of COPD offered complementary perspectives, were used throughout the analytic process to explore assumptions, challenge interpretations, and support transparency.

4.7. Ethical Considerations

Before participant recruitment, ethical approval was obtained from the relevant research ethics committee, and the study was registered with the national data protection agency and on the Open Science Framework. The research adhered to the principles of the Declaration of Helsinki (World Medical Association 2024). Prior to participation, all participants received written and verbal information about the study purpose, procedures, voluntary nature, and the option to withdraw at any time, and provided informed consent. Study codes and data were handled in accordance with applicable data protection regulations and stored securely.

5. Findings

We generated one overarching theme: Togetherness in light and darkness: Transformation of couplehood when living with COPD. It captures how couples responded to illness‐related changes and made sense of them by continually redefining their sense of togetherness, thereby transforming couplehood. The metaphor of light and darkness illustrates the tensions within couplehood; orienting toward what is lost versus what remains amid illness. As one person with COPD expressed, ‘It's a shadow illness, because not being able to breathe casts a shadow over everything in daily life’ (COPD 1). Others described being ‘caught in the dark’ during difficult moments (COPD 4), yet also ‘holding on to hope when everything gets a bit dark’ (COPD 3) and ‘trying to focus on what we have right now, on the good moments’ (Partner 3).

Togetherness appeared to unfold through two modalities: doing and being, reflecting couples' adjustments in everyday activities and rhythms toward a slower, aligned pace (doing) and their attuned emotional presence with one another (being). Beyond these, an existential dimension was identified, capturing how both persons with COPD and partners redefined their shared ‘we‐identity’ as either fading or renewed. Together, these modalities represent behavioural, emotional and existential dimensions of couplehood when living with COPD, which are presented as interrelated themes in Table 3.

TABLE 3.

Generated themes related to togetherness and couplehood when living with COPD.

Overarching theme: togetherness in light and darkness: transformation of couplehood when living with COPD
Dimension	Theme	Condensed interpretation	Central concept
Behavioural	Living in sync and out of step: (Mis)alignment in behavioural pace	Behavioural pace captures how couples responded to COPD‐related disruptions in everyday life. Discrepancies in pace and rhythms were managed by slowing down and adjusting activities, allowing togetherness in doing to be restored through alignment	Togetherness in doing (to do activities together in aligned pace)
Emotional	Holding back and holding on: Restraint and attunement in emotional presence	Emotional presence emphasizes how couples (re)connected through calm, attuned moments, sustaining togetherness in being with one another. Yet when worries were held back to protect the other from distress, restraint often turned into unintended distance	Togetherness in being (to be with one another in attuned presence)
Existential	Becoming another we: Fading or renewed couplehood	Couplehood denotes an enduring we‐identity built over time together but unsettled by illness, a tension between loss and hope. Depending on whether couplehood was anchored mostly in doing or being, it was experienced as either fading or renewed	Couplehood as becoming (to become another we, fading or renewed)

Note: Themes were developed from interviews with persons with moderate, severe, or very severe COPD and their partners (n = 15). From the three interrelated themes we synthesized the overarching theme, which captures how couplehood can be transformed across behavioural, emotional, and existential dimensions when living with COPD. Themes and central organizing concepts were generated through reflexive thematic analysis within a hermeneutic phenomenological framework.

To visually synthesize these insights, we developed the conceptual model (Figure 1), which illustrates how couplehood in the context of COPD was transformed through behavioural, emotional, and existential dynamics. Couplehood appeared to be renewed when couples were doing life together in an aligned behavioural pace and when being together was sustained through attuned emotional presence. The concepts of togetherness in doing and togetherness in being captured these dual modalities through which couples experienced themselves as becoming another we, a process situated as dynamic rather than fixed, unfolding between fading and renewed couplehood.

FIGURE 1.

Conceptual model of togetherness in light and darkness among couples living with COPD. This conceptual model was developed from an interview study including persons with moderate, severe, or very severe COPD and partners (n = 15). The model illustrates how COPD may transform couplehood across behavioural, emotional and existential dimensions of togetherness. Togetherness in doing refers to shared everyday activities and rhythms that have slowed in pace, while togetherness in being reflects emotional presence and mutual attunement. Through these shifts, many couples experienced changes in their sense of ‘we’, which could lead to either a fading or renewed couplehood. [Colour figure can be viewed at wileyonlinelibrary.com]

5.1. Living in Sync and Out of Step: (Mis)Alignment in Behavioural Pace

Behavioural pace was experienced as a fundamental dimension of life with COPD. Symptoms, particularly breathlessness, fatigue and coughing, often required persons with COPD to slow down, while partners adjusted their own pace to sustain everyday life together. The theme centred on togetherness in doing, a core structure of shared life that shaped whether couples lived in sync or fell out of step amid illness. More than the degree of discrepancy in their capacities, it was their ability to align rhythms and routines that appeared to sustain shared life as a couple.

COPD‐related constraints disrupted previously taken‐for‐granted rhythms, prompting continual adjustments in activities, routines, and responsibilities. Many couples maintained synchrony through subtle, often unspoken accommodations that were perceived as dictated by COPD; by reframing activities and reorienting toward new shared practices. They found new ways of doing things together and accepted moments of solitude. For others, persistent misalignment eroded participation and narrowed opportunities for togetherness in doing.

5.1.1. Responding to Misalignment: Acceptance or Distress?

Pace was often first disrupted in physical activities, especially walking, where partners adjusted silently, by shortening outings, changing activities to less demanding ones, or accepting pauses:

For instance, I can't go for walks with my wife anymore, not the way we used to. We can still take a short walk, but I can feel she adjusts her pace to mine (…) she never says a word about it. But I'll admit there are times when I just bow out, because I know I can't keep up. My wife is still doing well and full of energy, and I don't always want to drag her down with me (COPD 1).

Re‐alignment in pace could sustain togetherness in doing but also evoke feelings of being a burden, leading some persons with COPD to withdraw from activities to avoid constraining the partner's life, even though these joint activities were valued by both. Others described solitary pauses or personal time, especially among partners, as restorative for regaining strength and capacity to re‐align in pace, highlighting the fragile yet dynamic nature of behavioural pace. As symptoms intensified, discrepancies often grew more evident, narrowing what couples could do together. For most, misalignment in pace appeared to impair overall well‐being, and for some, caused distress:

…I do go along sometimes, but it's getting less and less. It breaks me (COPD 8).

Some couples maintained togetherness in doing by engaging in less demanding shared activities, though many linked these discrepancies in pace to guilt as they felt responsible for ‘slowing down’ or constraining their possibilities of doing life together, while also expressing gratitude for their partner's adjustments:

That's how it is with most of what we do, it's me who sets the slower pace. I'm the one holding him down. (…) I feel sorry for him, that in a way it also affects him, that I can't do as much anymore. But he says it's fine. We've had a lot of experiences in our life (COPD 3).

5.1.2. (Re)Alignment: When Rupture Turns Into Continuity

For some, persistent misalignment signalled a profound change in the relationship when the loss of shared rhythm was perceived as a threat to their sense of togetherness:

She has her own rhythm, which is very different from mine. So there isn't really a shared sense of ‘now we get up, and now we get going.’ We live in very different rhythms, and trying to make them match is really difficult. It's almost impossible to do things together, and it affects us as a couple. There's not much of a shared stride when our rhythms are so misaligned (Partner 1).

These misalignments often emerged gradually. The meaning attributed to lost activities, and whether new forms of joint engagement had replaced them, shaped their experiences of togetherness. For most partners this slower, home‐centred life appeared to be accepted by focusing on the good things that remained (the light). A few couples where both partners faced illness‐related limitations experienced a better match of tempi and rhythms than before, creating synchrony through mutual slowing down:

Yes, we move along quite well together. I used to always be in the fast lane, but now I've slowed down. Others can pass us if they want. (…) These days, everything happens in slow motion (COPD 10).

Here, reduced pace was thus reframed as continuity rather than rupture, becoming a way of sustaining togetherness in doing. Some found contentment in this shared slower rhythm, redefining what it meant to live together, emphasizing continuity and moving in step rather than loss or restraint.

The ability, or inability, to bridge discrepancies in pace and maintain togetherness also extended to their physical intimacy and sexual activity. These dimensions were challenged much like other joint activities, though also shaped by ageing and comorbid illnesses such as heart disease, prostate cancer, or stroke contributing to fatigue, erectile dysfunction, or reduced desire. What appeared to be COPD‐related, however, was how breathlessness often slowed or hindered sexual activity and, for many, made close bodily contact impossible:

…because I can't have close body contact. Then I can't breathe, so it's been reduced a lot. We can hug and things like that, but I can't lie close, because then I can't breathe. The breathlessness along with the inherent fear of a suffocating coughing attack, have meant that we are no longer physically close at all. I simply can't manage it because of the COPD. So kisses and hugs, that's what we do now (COPD 2).

Although many initially equated sexual inactivity with a loss of intimacy, most couples maintained a sense of togetherness through gestures of affection such as kissing, holding hands, and sitting close:

Well, being together in that way, having sex, that's what I mean by intimate. We don't do that anymore. But we still kiss, hold hands, and I tell him that I love him. That still means a lot to me. But the other part, we've left that behind (COPD 5).

5.2. Holding Back and Holding on: Restraint and Attunement in Emotional Presence

Unlike the focus on doing in theme 1, this theme concerned how couples connected emotionally through being with one another. Togetherness in being was most often expressed through subtle gestures of care, and only rarely as explicit declarations, yet it could be challenged by protective silence. Persons with COPD and their partners recognized that both sharing and withholding concerns could generate worry and distress, creating a risk of disconnection. Emotions deemed too burdensome were often held back. Such restraint could preserve harmony but also be misinterpreted as withdrawal, threatening the very closeness it sought to protect. Over time, as shared doing and physical intimacy diminished, togetherness in being became increasingly valued as vital for individual and shared well‐being, in some instances even strengthening connection.

5.2.1. Holding Back: A Shield or a Barrier?

For many, holding back was a deliberate act of protection; shielding the other from unnecessary distress. Partners in particular described keeping worries private, reasoning that sharing would only add to the COPD burden:

I keep it to myself because I don't want to worry P9 more than she already is. (…) We're perfectly capable of putting it into words if needed. It's just that I don't readily speak my worries out loud (Partner 4).

This emotional restraint was framed as care and loyalty, yet it often left the other alone with uncertainty, distance, or unresolved concerns. A common reasoning was that nothing would change anyway, so sharing negative feelings or vulnerabilities seemed futile. Although such restraint could prevent conflict, it often curtailed togetherness in being, leaving both partners feeling alone and disconnected:

It almost gets to the point where I keep everything inside, just to avoid creating a bad atmosphere. And that makes you feel completely alone with it sometimes. (…) The love is still there, of course. It's just that when I speak up and bring something unpleasant to the table, well, then it's no longer so nice. And that affects our relationship (COPD 9).

5.2.2. Holding on: Threatening Silence or Calm Quietness?

Despite these restraints, most persons with COPD and partners perceived togetherness in being through a sense of attunement often experienced through moments beyond words; enacted in calm, everyday situations of mutual presence and responsiveness. They found joy in each other's company while sharing coffee, listening to birds, or sitting quietly side by side. Such moments were experienced as light amid the shadow of illness and perceived as profound expressions of closeness:

That's quality of life at its fullest, just sitting together and sharing a moment like that. That's when you really feel it. (…) We don't say much, but that's exactly the point, you don't need to say anything. You're simply there, together, and that's enough. It's in those moments that I truly feel joy. Feel that we matter to each other (COPD 4).

In contrast to silence as restraint, quietness here signalled togetherness in being, an attuned presence conveying loyalty, patience, and companionship. These experiences were often valued more now than before illness disrupted their lives.

Moreover, for many couples, COPD‐related symptoms shifted intimacy from physical intimacy and sexual activity toward quieter forms of being together, also perceived as emotional closeness through attuned presence. While some missed earlier forms of physical intimacy, all persons with COPD and most partners valued this reconfigured emotional intimacy even more, as it had become central to sustaining togetherness and well‐being:

We lie together and cuddle a bit, sit together on the sofa in the evening, holding hands (…) Perhaps we have a kind of greater closeness now, and a different, deeper love, and that means a lot. (…) Even though we are not intimate as before, we still keep the kisses, hugs, and our moments of just being (…) I think it helps to keep the love and joy alive. I feel we have found a good balance in it, I really do (Partner 3).

5.3. Becoming Another We: Fading or Renewed Couplehood

This theme focused on the transformation of couplehood where becoming another we captured how illness could unsettle couples' shared identity, evoking an existential tension between loss and hope, fading and renewal, light and darkness. Many persons with COPD and their partners experienced profound changes in how they understood couplehood as they sought to manage life with COPD together or apart. How couples responded appeared to depend on where their togetherness was anchored and what was considered meaningful within their relationship. When togetherness was anchored in doing, losses and constraints became more pronounced, whereas anchoring in being tended to sustain or deepen couplehood. The process of becoming another we could thus be experienced as either fading or renewed. Persons with severe COPD often oriented toward being, while those less limited, including partners, tended to anchor their we in doing.

5.3.1. Existential Threat: When a Fading We Is a Fading I

When couplehood was anchored primarily in togetherness in doing, COPD progression often translated into profound losses. Persons with COPD and partners described how everyday spontaneity and reciprocity waned, as attention turned to what had been lost or might disappear in the future. The sense of loss extended beyond shared activities to recognition, equality, and identity. Over time, the erosion of togetherness in doing was felt as a fading of couplehood itself:

…it is more like I am driving on the motorway while she rattles along on a gravel road. It creates a gap between us, because everything must be planned and slowed down. It suffocates the spontaneity, and in that way it slowly suffocates our relationship, because there is less and less of a joint journey for us (Partner 1).

Such concerns about a fading or dying we were common. Persons with COPD often felt they were no longer, or were less of, a ‘real partner’ or ‘real man’, often linked to things they could no longer do. For some, this erosion undermined reciprocity and equality and threatened dignity, and at its most profound, it intertwined with fears of losing one's sense of self:

What I am most afraid of losing is my identity, you could say. The man I have always been. It pains me more to think of that than to think of death itself. That I might end up as another man before I leave this world. I cannot bear that. It also pains me, the thought of having to say goodbye to her (COPD 6).

5.3.2. Existential Growth: When a Renewed We Is a Renewed I

For some, illness restricted couplehood, yet also opened possibilities for becoming another we. When meaning was re‐anchored in togetherness in being rather than in doing, persons with COPD and their partners reoriented toward ‘the light’ and what could still be nurtured and valued in shared life. Loss remained but was perceived as less threatening, allowing closeness and belonging to be sustained. Mutual recognition, dignity, and loyalty could be preserved, and in some accounts, couplehood flourished through a deeper sense of intimate belonging:

We are still just the two of us, and we have become closer, because we've had to find a new rhythm, since everything is different now. And that gives a sense of calm (…) Even though we're getting older, and each of us has our own limitations, it's important for us to have quality time as a couple. It doesn't really matter what we do, as long as we do something together. That's our time, and it truly means something (COPD 10).

Renewal arose less from restoring lost activities and more from affirming presence and belonging. Illness, in this way, not only constrained but also illuminated what mattered, and the shift toward being with allowed love and intimacy to endure in new manifestations:

…we still have that between us. The closeness. Even though it is different now, it is still there. (…) It means everything. Otherwise, I think everything would feel empty. The closeness we have makes me still feel loved. I feel that we belong together now, perhaps even more than before. I have no doubt whatsoever about the two of us. What we still have; it may be that we cannot do the same things anymore, but we still have that bond, if you can call it that. The we, we have become, that is what lifts me up. What keeps me going (COPD 3).

Such reflections illustrate how couplehood could be renewed, not by denying change but by reconfiguring what carried existential weight. The bond was sustained through an enduring sense of being loved and belonging together, and for some, this fostered individual flourishing when intimacy and belonging were deepened. It appeared that couplehood and well‐being were affected not only by what was perceived as lost but also by what could still be sustained through being‐with one another. Yet even amid renewal, uncertainty lingered, as most remained aware that the progressive nature of COPD might again challenge their sense of we:

… it may also end up changing us. Whether we will still remain husband and wife, I don't know. I hope so. But I try not to think too far ahead. (…) we just try to be happy for the days we have together (Partner 2).

6. Discussion

The present study is among the first to explore relationship dynamics and intimacy in couples living with COPD, moving beyond the predominant biomedical emphasis in sexual health research. We found that COPD changed how persons with COPD and their partners experienced intimacy and closeness in their relationship. Breathlessness and a slower pace of daily life often disrupted shared routines, roles, and activities, constraining both everyday and intimate forms of togetherness alike. Many persons with COPD and partners described the need to continually find new rhythms in everyday life, often shifting intimacy from physical activities toward emotional presence. For some couples, this led to a sense of loss in their relationship, whereas for others, it created opportunities to reconnect in different, often deeper ways. In this way, COPD could both challenge and renew a couple's sense of ‘we’.

6.1. Breathlessness Disrupts Behavioural Pace

Breathlessness is well established as being associated with anxiety, activity avoidance, dependence on others, social isolation and reduced quality of life (Hutchinson et al. 2018). As COPD progresses, increasing symptoms and functional decline often slow and restrict daily activities and social participation, contributing to a gradual loss of independence (Johansson et al. 2025). For people with severe COPD, breathing becomes an ever‐present horizon shaping everyday life, often leading to avoidance of symptom triggers and withdrawal from activities (van der Meide et al. 2019). Ekdahl et al. (2023) showed that women with advanced COPD felt ‘trapped’ by breathlessness but coped by accepting a slower pace and valuing moments when breathing eased; when such moments were shared, they fostered togetherness and gave life meaning. These accounts align with our findings: breathlessness slowed couples' behavioural pace and constrained their ability to engage in everyday life together, gradually transforming couplehood. Togetherness in doing became fragile and dependent on tacit alignment of rhythms and routines, whereas misalignment often led to physical withdrawal and emotional restraint, risking a fading couplehood and undermining belonging and well‐being for both partners.

A similar form of togetherness has been described among older couples living with various conditions, who maintained their bond by adjusting daily activities and reworking routines. In contrast to our findings, they appeared to do more things together (Riekkola et al. 2019). However, it is unclear whether this referred to more frequent leisure activities, shared household chores, or simply spending more time together. When persons with COPD and their partners reconciled themselves to new forms of togetherness in being, they could, in Galvin's (2021) terms, perceive settledness and peace and thereby regain mutuality and belonging. This shift in focus from doing to being might restore a sense of meaning and well‐being despite illness. Thus, couplehood may be nurtured and even deepened despite illness and restrictions in social life.

6.2. Couplehood and COPD as a ‘We‐Disease’

Our findings support that coping with COPD is rarely individual but unfolds within the couple. Couples sought to preserve or renew togetherness by aligning everyday pace and routines (doing) and by valuing moments of emotional presence (being). Couplehood was perceived as an enduring ‘we‐identity’ accumulated over time through shared life, developing mutual recognition, dignity, and belonging. Thus, COPD may be usefully understood as a ‘we‐disease’, given that illness‐related stressors are commonly managed jointly (Hou et al. 2025).

Dyadic coping can entail both supportive and unsupportive responses, such as mutual responsiveness versus disengaged avoidance. Across chronic diseases, including COPD, dyadic coping is associated with higher relationship satisfaction and well‐being (Hou et al. 2025; Vaske et al. 2015). Positive dyadic coping may strengthen intimacy and mutual trust, suggesting that relational responses to COPD are closely linked to well‐being (Zhang et al. 2024). It appears particularly beneficial when couples share a similar ‘we‐disease’ appraisal. A longitudinal study demonstrates that such shared appraisal fosters open communication, more positive dyadic coping, greater closeness and sexual satisfaction, whereas divergent perceptions of dyadic coping may be linked to emotional distress (Shrout et al. 2024).

In COPD, however, dyadic coping may decline as illness progresses and is associated with poorer quality of life for both partners (Vaske et al. 2015), indicating that alignment becomes increasingly difficult to sustain over time. Our findings resonate with this pattern, as couplehood appeared more vulnerable when partners differed in how they responded to illness‐related changes or derived meaning from doing versus being. Couples who focused primarily on lost activities tended to dwell on absence, whereas those who valued emotional connection seemed better able to maintain a sense of togetherness.

In this present study ‘holding back’ worries was a common strategy, intended to shield the other from distress and preserve short‐term harmony. However, it operated as both shield and strain, as it curtailed togetherness in doing and being, complicating coping, and fostering feelings of disconnection and a fading couplehood. In cancer research, hiding or concealing concerns has been labelled ‘protective buffering’ and is associated with adverse psychosocial outcomes, greater distress, and reduced relationship satisfaction (Kayser et al. 2018). Taken together, togetherness in doing and being may be viewed as dyadic coping strategies: when disrupted, couplehood risks fading; when sustained or reconfigured, couplehood may be renewed, supporting resilience and well‐being despite illness.

6.3. Existential Becoming Another We

Our findings indicate that life with severe COPD entails profound physical, psychosocial, and existential changes to couplehood. From an existential perspective, these dynamics resonate with Heidegger's notion of Being‐with, where human existence (Dasein) is fundamentally relational and lived through being‐with others (Heidegger 2019). COPD appears to unsettle this shared being‐with, threatening the couple's sense of togetherness and existence. Yet, care (Sorge) expressed through protection, pacing, and emotional attunement also appeared to reaffirm connection and belonging. In this light, togetherness was not merely a form of dyadic coping but an existential practice of sustaining both ‘we’ and ‘I’.

This aligns with recent definitions of ‘we‐ness’ illustrating that coping with illness is a shared, interdependent relational process (Hou et al. 2025), and where this identity as a ‘we’ has been found to be closely tied to relationship satisfaction and resilience (Cruwys et al. 2023). Consistently, we found that some persons with COPD and partners accepted these shifts as a natural part of ageing together, suggesting that their sense of we persisted, although no longer taken for granted. Couplehood appeared more vulnerable when partners diverged in how togetherness was sustained and where meaning was anchored (doing or being). Becoming another we thus seemed central to sustaining couplehood in COPD. This aligns with Galvin's (2021) view that well‐being may arise through becoming something other than before in relation with others. Our findings therefore support a couple‐centred understanding of well‐being in COPD, as well‐being emerges through shared identity, reciprocity, and becoming‐with another.

Interestingly, similar dynamics have been observed in dementia care, where cognitive decline rather than breathlessness challenges shared everyday life. Here, couplehood has been described as oscillating between loss and belonging, with moments of connection and reciprocity in everyday life helping to strengthen the relationship (Stefánsdóttir et al. 2022). Spousal caregiving has likewise been described as both vulnerable and resilient, with illness sometimes straining and other times strengthening their bond by adopting a positive mindset (Gallagher and Rickenbach 2020). Our findings echo these shifts, showing that couplehood in COPD is continually reshaped, at times fading under COPD‐related decline and at other times renewed through a shared reorientation toward what remained possible.

Lost activities, roles, and routines appeared closely tied to grief, dependency, and fears of becoming a burden. Aligning pace and valuing emotional connection therefore seemed important not only for sustaining everyday life, but also for preserving dignity, belonging, and reciprocity. Taken together, togetherness in doing and togetherness in being may be understood as two interconnected modalities through which couples experienced themselves as becoming another ‘we’. Couples who were able to reorient shared life from activities toward emotional presence seemed better able to sustain couplehood despite illness‐related limitations, whereas those whose sense of togetherness remained closely anchored in doing appeared more vulnerable to distance and a fading ‘we’. As these are novel indications, further exploration in future studies is warranted.

6.4. Sexuality as Intimacy

Our findings support that sexuality is often expressed differently when shared everyday life and intimacy is disrupted by COPD or other conditions. In our sample, couples had typically lived with COPD for nearly a decade, and all reported restrictions in shared life and intimacy; those with more severe COPD often experienced discomfort with close bodily contact. Limitations were further experienced as linked to either older age or other illnesses. Social norms around bodily and sexual decline in older age are widespread, and many accommodate change by focusing on preserved aspects of sexuality rather than on what has been lost (Towler and Graham 2019).

We also found that persons with COPD and partners often emphasized what remained and reoriented to what could be nurtured within their couplehood. This appeared to be linked to a shift in focus from doing to being and accordingly from physical to emotional intimacy. Emotional intimacy was explicitly valued over physical intimacy, and these changes were often accepted; frequently understood as an inevitable part of growing old together. For many, acceptance functioned as an intentional adjustment that helped sustain both the ‘I’ and the ‘we’, consistent with evidence that acceptance is the most common coping strategy in COPD and supports finding new ways to sustain joy despite illness burden (Gonçalves et al. 2025).

At the same time, sexuality and intimacy are closely intertwined with identity, and changes in physical intimacy may challenge both individual and relational senses of self. In the context of caregiving, intimacy is often reshaped rather than simply lost. For some couples, emotional intimacy may be strengthened through caregiving, whereas for others, stress, role strain, and unspoken expectations may constrain both physical and emotional intimacy (Sinković and Towler 2019). Consistent with this complexity, we found that intimacy was often not lost but reconfigured into emotional togetherness, as couple life was re‐anchored from doing toward being. This transformation was neither uniform nor straightforward: some participants expressed ambivalence or grief about diminished sexual activity, and not all couples discussed these matters openly. Where emotional closeness was explicitly valued, it appeared to contribute to a deeper sense of belonging and a renewed couplehood.

The present findings highlight that COPD care may benefit from moving beyond the biomedical and individual focus toward greater attention to the emotional, relational, and existential consequences of living with COPD, while recognizing the couple as a unit of care. Such an approach may better promote well‐being among both persons with COPD and their partners.

6.5. Strengths and Limitations

A key strength of this study is the inclusion of both persons with COPD and partners, which enabled us to capture divergent perspectives and support the view of COPD as a ‘we‐disease’. The study provides an in‐depth understanding that extends beyond description and offers novel insights into how intimacy and relationships are transformed in the context of COPD. As our findings resonate with previous research within and beyond COPD, we consider them plausibly transferable to other couples living with chronic illness, particularly where breathlessness, relational, and existential dimensions are at stake (Braun and Clarke 2020). However, it remains unclear to what extent our findings are COPD‐specific or related to breathlessness, which may challenge their transferability.

Several factors may affect transferability. First, participants were older and in long‐term relationships, reflecting the study's focus on couples with COPD. Experiences may therefore differ among younger or newly diagnosed persons with mild COPD and among those not living in long‐term relationships. Second, partner participation was modest, limiting the nuance of partners' perspectives and our ability to explore within‐dyad differences; consequently, the voices of persons with COPD were more prominent. Furthermore, as partners were recruited primarily through participating persons with COPD, convenience sampling may have limited variation in partner perspectives, as variation among partners largely reflected the variation achieved among those with COPD. Third, telephone rather than face‐to‐face interviews, and individual rather than joint interviews, limited opportunities to observe dyadic interaction directly. Fourth, COPD severity was self‐reported and FEV₁ values were up to a year old, introducing classification uncertainty. Fifth, volunteer recruitment may also have favoured participants more comfortable discussing intimacy. Finally, the Danish context may limit transferability, as perceptions of sexuality vary across cultures (World Health Organization 2006; Ezhova et al. 2020). Nevertheless, similar relational and existential dynamics have been described in cancer and dementia research, suggesting that experiences of transformed couplehood may have relevance beyond COPD care.

6.6. Recommendations for Further Research

Future work should further explore how breathlessness slows behavioural pace, both disrupting intimacy and enabling new possibilities for emotional closeness. Longitudinal, multi‐method studies are needed to demonstrate these dynamics across the disease trajectory, for example through repeated individual interviews complemented by diaries or observational studies, to confirm, nuance, and challenge our interpretations. Intervention studies could develop and evaluate couple‐centred approaches aimed at supporting shared adaptation and emotional connection while assessing effects on dyadic coping and well‐being.

Future research should also investigate how partners' relational, existential, and intimacy‐related support needs can be systematically identified and addressed across healthcare settings. Existing support initiatives involving partners appear particularly limited in COPD care (Johansson et al. 2025), and primarily focus on patients' disease management, while sexuality and cohabitation remain among the least addressed areas of support (Dieperink et al. 2024).

6.7. Implications for Policy and Practice

This study suggests that COPD should be approached as a ‘we‐disease’, attending to the couple as a unit of care. Nurses and other healthcare professionals should be aware that persons with COPD and their partners may adopt protective strategies, such as withdrawing from shared activities or withholding worries that may unintentionally hinder dyadic coping and contribute to emotional distance. Findings further suggest that silence surrounding intimacy and emotional concerns may operate not only between patients and healthcare professionals, but also within couples themselves, where concerns are withheld in attempts to protect one another. To promote a meaningful life, nurses should attend not only to how couples manage illness, but also to the meanings they ascribe to these adaptations (Eklund et al. 2019). Such relational dynamics may be brought into light by attending to subtle verbal and non‐verbal cues of a fading couplehood. Expressions such as ‘we don't do anything together anymore’ or ‘we used to walk together’ may reflect loss, longing, and emotional distancing and may invite exploratory follow‐up questions about perceived loss and what these activities previously meant to them as a couple. While statements such as ‘I do not want to worry him/her’ or ‘I feel like a burden/housekeeper’ may reflect protective buffering and unmet relational or existential concerns and warrant further exploration.

Conversations about changes in shared everyday life may provide a more accessible entry point for addressing intimacy than direct questions about sexual activity. Nurses may, for example, normalize these concerns by acknowledging that living with COPD often slows shared activities and reshapes closeness in different ways. Questions such as ‘How has breathlessness affected the activities you enjoy doing together?’ or ‘How has COPD changed the way you are together as a couple?’ may help initiate dialogue. This may help surface concerns that might otherwise remain unspoken and thereby mitigate barriers surrounding both sexual and existential concerns, including discomfort, uncertainty, and concerns about overstepping professional boundaries (Fennell and Grant 2019; Assing Hvidt et al. 2018). Soon after diagnosis, some persons with COPD may hide breathlessness out of shame or self‐blame, creating ‘parallel worlds’ in which partners remain unaware of the burden (Bragadottir et al. 2018). This highlights the importance of early and open communication, proactively facilitated by nurses, to help prevent relational strain and support couples in sustaining emotional closeness and shared everyday life.

Missed nursing care, defined as care that is omitted, delayed or only partially completed, is increasingly recognized as a global challenge. Fundamental, communicative, emotional and educational aspects of care are most vulnerable to omission in busy healthcare settings (Chaboyer et al. 2021). Persons with advanced COPD report that only physical symptoms provide legitimate access to outpatient care, whereas psychosocial concerns remain unaddressed (Lavesen et al. 2024). Conversely, feeling heard and having the broader consequences of breathlessness acknowledged by healthcare professionals may support coping and well‐being for both persons with COPD and caregivers despite ongoing symptoms (Hutchinson et al. 2018). This reinforces the need to recognize changes in intimacy and couplehood as legitimate and essential concerns within COPD care rather than as peripheral or optional topics.

Conversations about intimacy do not require extensive counselling or separate consultations, but may instead be integrated into routine clinical encounters. Patient‐reported outcome measures (PROMs) such as PRO‐Pall may facilitate person‐centred dialogue by helping healthcare professionals identify not only physical symptoms but also psychosocial concerns, including intimacy, when patients' responses are actively used as entry points for communication (Shabnam et al. 2025; Gronhaug et al. 2024).

Recognizing how COPD disrupts intimacy and unsettles the couple's shared sense of ‘we’ may help nurses support couples in realigning behavioural pace and sustaining emotional connection. Supporting opportunities for shared activities that nurture the sense of couplehood may therefore be essential for promoting well‐being in COPD‐care. What may matter is not the pace or distance of walking, but whether activities such as walking remain shared experiences that sustain closeness and a sense of ‘we’ despite COPD‐related limitations. These findings highlight the need for respiratory nursing approaches that recognize intimacy and couplehood as integral dimensions of living with COPD and support nurses in addressing relational and existential concerns within everyday clinical encounters. They may also inform policy development aimed at integrating couple‐centered perspectives into chronic care pathways, consistent with recent European calls for greater attention to the psychosocial needs of persons living with lung disease and those close to them (Lungs Europe 2026).

7. Conclusion

In couples where one partner lived with moderate, severe or very severe COPD, COPD‐related changes reshaped how both partners experienced their relationship and intimacy. Breathlessness slowed everyday life and disrupted shared routines, roles, and identities, often shifting physical intimacy from active engagement in shared activities to quieter forms of emotional connection. Alignment in daily pace, mutual presence, and emotional responsiveness appeared essential for sustaining or renewing couplehood, whereas misalignment and protective emotional restraint could create distance and a sense of a fading ‘we’.

Together, these findings move beyond conventional understandings of sexual health in COPD by illuminating how COPD transforms couplehood and well‐being through disruptions to the couple's shared ‘we‐identity’ across behavioural, emotional and existential dimensions, at times risking a fading couplehood while also opening possibilities for renewal.

Funding

This work was supported by the Region of Southern Denmark (grant number 24/28592), the Beckett Foundation, and Eva Merete Falck Crone's Foundation (grant number 10‐100071). The funders had no role in the design, conduct, or reporting of this study and will receive the article only after publication.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Data S1: Standards for Reporting Qualitative Research (SRQR).

Data S2: Interview guides.

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.