Breaking the invisible cage: social isolation and coping strategies among patients with idiopathic pulmonary fibrosis

Abstract

Background

Idiopathic pulmonary fibrosis is a progressive disease that profoundly impacts patients’ psychosocial well-being. Social isolation is a significant but often overlooked challenge in this population. This study aimed to explore the lived experiences of social isolation among patients with idiopathic pulmonary fibrosis.

Methods

A secondary qualitative analysis was conducted on semi-structured interview data from a parent study involving patients with idiopathic pulmonary fibrosis. The dataset was analyzed via conventional content analysis to systematically interpret patients’ experiences of social isolation.

Results

Three core themes (antecedents, consequences and coping strategies) emerged from the analysis. The antecedents of social isolation include physical decline, the repercussions of medical interventions, external environmental barriers, and strained interpersonal dynamics. The consequences included reduced social ties and compromised psychological well-being, which coexisted with an emergent desire for social reconnection. Patient coping strategies were centered on the strategic management of finite energy and the proactive pursuit of alternative forms of social support.

Conclusion

Social isolation in patients with idiopathic pulmonary fibrosis is a complex phenomenon shaped by the interplay of physiological and sociocultural factors. The “antecedent-consequence-coping” framework developed herein offers a nuanced lens to understand the predicament of this group and provides a valuable scaffold for designing robust patient support systems.

Background

Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive, and ultimately fatal pulmonary disease characterized by fibrotic scarring and structural breakdown of the lungs [1]. The disease is associated with a grim prognosis, with a median survival of approximately 3–5 years post-diagnosis and a mortality rate that surpasses that of many malignancies [2]. IPF predominantly affects middle-aged and older males, and its global incidence is increasing [3]. Although antifibrotic agents such as nintedanib and pirfenidone can decelerate the rate of pulmonary function decline, they do not reverse the underlying pathology [4]. Consequently, patients endure a substantial symptom burden, primarily comprising dyspnea, refractory dry cough, and profound fatigue [5]. This burden severely impairs their quality of life and poses significant challenges to maintaining social functioning, frequently leading to social isolation.

Social isolation, defined as an objective deficit in an individual’s social connections [6], is an established risk factor for adverse health outcomes [7] and reduced life expectancy [8] within the general population. Its detrimental effects operate at physiological, behavioral, and psychological levels. Physiologically, social isolation may be associated with inflammatory and immune changes by promoting inflammatory responses and dysregulating immune function [9]. Behaviorally, it may reduce an individual’s access to social support and ability to utilize healthcare resources [10]. Psychologically, it can lead to distress, including anxiety and depression, and foster a sense of psychological alienation [11]. In patients with IPF, these risks are significantly exacerbated by disease-specific characteristics, such as advanced age and a heavy symptom burden. Furthermore, evidence indicates that while up to 80% of patients with IPF report a pressing need for psychological support, about 23% perceive this need as lacking in current care [12]. This deficit in supportive care not only leaves their psychological needs unaddressed but also intensifies their sense of social isolation.

Within the Chinese context, sociocultural values modulate isolation mechanisms. The preservation of “face” frames physical decline as a threat to dignity, precipitating withdrawal to maintain social standing [13, 14], while collectivist mandates for family harmony foster “protective self-isolation” to mitigate caregiver burden [15, 16]. Concurrently, norms enforcing stoicism—typified by the idiom “reporting good news but not bad”—drive the internalization of distress, engendering emotional isolation despite familial proximity [17]. These distinct, culture-bound pathways necessitate targeted investigation.

Although existing research has begun to acknowledge social isolation in patients with IPF [18–21], a comprehensive understanding remains limited. This knowledge gap is particularly pronounced in the Chinese sociocultural context. To address this gap, the present study conducted a secondary qualitative analysis of data from a parent study exploring the lived and therapeutic experiences of Chinese patients with IPF. The objective of this study was to comprehensively explore the experience of social isolation in this population. The findings are intended to provide empirical evidence and theoretical guidance for the development of culturally tailored support interventions.

Methods

Research design

This study presents a secondary qualitative analysis of interview data derived from a parent mixed methods study on IPF, registered at ClinicalTrials.gov (Identifier: NCT06629623; posted October 8, 2024). The parent study employed a prospective, observational design to comprehensively explore the status of diagnosis, treatment, and quality of life in patients with IPF [22]. It integrated qualitative interviews with 50 patients with a quantitative survey among 245 patients to capture diverse perspectives on the patient journey and expectations. Ultimately, 53 qualitative interviews were completed in the parent study. Although the primary interview guide focused on clinical trajectories, it also probed into daily life changes, family dynamics, and social activities. These inquiries yielded rich data pertinent to social isolation, providing sufficient depth for a focused secondary analysis. Furthermore, the principal investigator of this analysis served as a core member of the parent study team, ensuring a deep contextual understanding of the data.

Analytical framework

This study employed conventional content analysis, an inductive approach that is well suited for allowing themes to emerge directly from participant narratives rather than being guided by preconceived theories [23]. The analysis was guided by the central research question: “What are the lived experiences of social isolation in patients with IPF?”

Ethical considerations

This study was conducted in accordance with the ethical principles outlined in the Declaration of Helsinki. The study protocol was reviewed and approved by the Medical Science Research Ethics Committee of Peking University Third Hospital (Approval No. 2024-188-02; Date of approval: March 11, 2024). All participants provided written informed consent prior to their inclusion in the study. The consent form specified that their data would be anonymized and could be used for future secondary analyses. Participant confidentiality was maintained throughout the research process.

Study participants and recruitment

The parent study recruited participants from multiple hospitals and patient organizations across six geographical regions in China. To ensure the sample captured a broad spectrum of healthcare experiences, a stratified sampling strategy was employed to target individuals with diverse genders and disease durations. The inclusion criteria were: (1) a confirmed diagnosis of IPF; (2) age ≥ 18 years; and (3) the ability to communicate effectively. The exclusion criteria included: (1) interstitial lung diseases with known etiologies, such as occupational/environmental exposure, connective tissue diseases, or drug toxicity; (2) coexisting chronic respiratory diseases, including bronchial asthma and pulmonary tuberculosis; (3) hematological disorders, lung cancer, or other malignancies currently under treatment; (4) scheduled surgery in the near future or history of surgery within the past six months; and (5) refusal to participate. These criteria were established to ensure diagnostic specificity by excluding secondary pulmonary fibrosis and to minimize confounding from severe comorbidities.

Data collection

For this secondary analysis, we drew on segments of the original interview dataset in which participants discussed social interactions and support systems. Specifically, we focused on responses to questions such as: “How has the progression of the disease affected your quality of life, for instance, in daily activities such as socializing?” and “Since your diagnosis, what specific forms of support have you received from sources such as family, friends, or fellow patients?” In the parent study, interviews were conducted in quiet, private settings and were audio-recorded in Chinese, with a mean duration of 34 min. Given the advanced age and high symptom burden of this population—characterized by severe dyspnea and refractory cough—some patients experienced physical limitations that hindered verbal expression. In such instances, accompanying family caregivers served as communication proxies. It is important to note that these family members were not recruited as independent research participants; rather, their role was strictly supportive, providing descriptions of the patients’ behaviors and living environments to enhance contextual understanding. For the purpose of this secondary analysis, the complete dataset, comprising 53 patient interviews (19 of which involved family member participation), was retrieved. All transcripts were de-identified and quality-checked against the original recordings to ensure accuracy.

Data analysis

Prior to formal analysis, researchers reviewed and organized all verbatim transcripts to verify their accuracy and completeness. Data were subsequently analyzed inductively, employing the conventional content analysis approach described by Hsieh and Shannon [23]. Two researchers (a Ph.D. in Nursing and a master’s student) engaged in repeated reading of each transcript to achieve familiarization and a holistic understanding of the participants’ experiences with social isolation. Initial annotations were made on narratives concerning social interactions, psychological status, and support systems. Based on these preliminary markings, the data were screened; segments directly relevant to the research questions were retained for analysis, while extraneous content served as contextual background. Information provided by family members was rigorously distinguished from patients’ subjective narratives. Family input was utilized exclusively to describe patients’ daily routines and environments, serving to supplement and corroborate self-reports—particularly in cases where patients faced communication barriers due to severe symptoms. Line-by-line coding was performed on the original Chinese transcripts. Through an iterative process of discussion, the two researchers grouped codes into subcategories and categories based on conceptual relationships, continuously refining their definitions. Data saturation was determined when the analysis of subsequent transcripts yielded no new categories. Finally, a category matrix was developed, and representative verbatim quotations were extracted to substantiate the findings.

Credibility and reflexivity

Rigor was established through a multifaceted approach. To enhance credibility, the researchers engaged in prolonged immersion in the data, maintained field notes to capture contextual details and non-verbal cues, and utilized illustrative participant quotations to substantiate the themes. To mitigate researcher bias, ongoing reflexive memos were documented throughout the analytic process to examine positionality and preconceived assumptions. For example, the researchers acknowledged their pre-existing perspective that social isolation was primarily a functional limitation dictated by the severity of physical symptoms (e.g., breathlessness). Furthermore, two research team members held regular consensus meetings to critique the coding process and methodological decisions. By actively seeking alternative interpretations and avoiding premature closure, the team ensured that the findings were grounded firmly in the data rather than in the researchers’ prior assumptions [24–26].

Results

Participant characteristics

The study included 53 patients with IPF. The median age of the participants was 66 years (range: 35–98), reflecting a predominantly older cohort. The sample was largely male (n = 34, 64.2%) and married (n = 46, 86.8%). Disease duration varied, with similar proportions of patients diagnosed for less than one year (n = 26, 49.1%) and for one year or more (n = 27, 50.9%). Educational attainment was diverse, with a notable proportion of participants (n = 25, 47.2%) having completed junior high school or less. The detailed participant characteristics are presented in Table 1.

Table 1.

Demographic characteristics (n = 53)

Characteristic	Level	n (%)
Age	Median (Min–Max)	66 (35–98)
Sex	Male	34 (64.2%)
	Female	19 (35.8%)
Educational Level	Middle school or below	25 (47.2%)
	High school	12 (22.6%)
	College or above	12 (22.6%)
	Not mentioned	4 (7.5%)
Marital Status	Married	46 (86.8%)
	Divorced or widowed	5 (9.4%)
	Not mentioned	2 (3.8%)
Time Since Diagnosis	Less than 1 month	7 (13.2%)
	1–6 months	10 (18.9%)
	6 months–1 year	9 (17.0%)
	1–2 years	13 (24.5%)
	More than 2 years	14 (26.4%)
Region	Northeast	5 (9.4%)
	North	14 (26.4%)
	Northwest	1 (1.9%)
	East	11 (20.8%)
	Central-South	14 (26.4%)
	Southwest	8 (15.1%)

Overarching themes

Drawing upon participants’ vivid descriptions of their lives as akin to “being in jail,” we conceptualized the experience of social isolation in IPF as an “invisible cage.” Under this conceptual framework, we organized ten sub-categories into three overarching categories that depict the process of social isolation among patients with IPF: (1) Antecedents of Social Isolation, (2) Consequences of Social Isolation, and (3) Strategies to Cope with Social Isolation (Fig. 1). The detailed sub-themes within each category are presented in Fig. 1.

Fig. 1.

Experience of social isolation in patients with IPF

Antecedents of social isolation

Constraints from physical decline

Physical decline is a primary antecedent of social isolation, as deteriorating physical function creates numerous constraints on social life. First, diminished physical stamina directly limits participation in social activities, as even routine movements induce fatigue and lead to social withdrawal.

“Even basic daily activities are tiring, so my social life has shrunk a lot…” (P22).

Second, dyspnea directly impedes verbal communication. The need to pause for air during conversations caused embarrassment and frustration, making social interaction difficult.

"When I talk for a while now, I get this feeling of not being able to catch my breath. You can probably hear it... my breath is short.” (P5)

Third, the disease disrupts daily routines, often reversing sleep‒wake cycles. The resulting daytime exhaustion was incompatible with the timing of most social events.

“I do not sleep well at night. I cough, have to get up and sit for a while and then doze off when I'm exhausted. I sleep a bit better during the day.” (P26)

Finally, as the disease progressed, some participants lost the ability to perform basic self-care, eroding their capacity for independent social engagement outside the home.

“I have a caregiver now. I cannot even take a shower by myself… I cannot manage it because I cannot breathe.” (P41).

Medical constraints on social life

Medical interventions, while essential, often create significant barriers to social engagement. Long-term oxygen therapy physically tethers patients to their equipment, restricting movement. This was compounded by a psychological burden, as the visibility of the apparatus made their “patient identity” conspicuous and induced shame.

“He cannot go out, because he’s tied to this oxygen machine. He cannot get away. If he could, he would go out.” (F42).

Furthermore, medication side effects—such as gastrointestinal distress or photosensitivity—created physical unpredictability and anxiety about self-image (e.g., Cushing’s syndrome), further discouraging social outings.

“Nintedanib gives you diarrhea. Sometimes the diarrhea is just awful, causing a lot of inconvenience… However, to control the disease, you have no choice but to take it.” (P17).

Environmental barriers to social participation

The external environment presents significant physical and health-related barriers. First, a lack of accessible infrastructure, such as elevators, severely limits mobility, effectively confining some patients to their homes.

“We live on the fifth floor, and I cannot walk up anymore. I have to be helped or carried out every time.” (P51).

Second, environmental triggers such as poor air quality or inclement weather could provoke respiratory symptoms, creating a justifiable fear of going outdoors.

“My main symptom is now coughing. It gets better when the weather is warm, but if it is cold and windy, I start coughing easily.” (P22).

Finally, a profound sense of vulnerability to infection in public spaces compelled patients to deliberately avoid social gatherings to protect their health.

“Now I do not even go for walks outside the house. I’m just so afraid of catching something from others. Our resistance is not as strong as theirs… I avoid crowded places. I just cannot go out.” (P44).

Interpersonal estrangement

Social isolation was also driven by strain within key relationships. Familial overprotection, although well-intentioned, often restricts patients’ autonomy by preventing social contact.

“When relatives and friends want to visit, we turn them all away. We don’t let them in.” (F50).

The loss of employment and subsequent role reversal from provider to care recipient eroded patients’ sense of self-worth. This was compounded by a profound sense of being a burden on their family, leading patients to withdraw.

“I’ve been sick for over a decade… I feel like a useless person… My daughter has to take leave from work to push me in a wheelchair, is not that causing a lot of trouble?” (P45).

Finally, the social stigma associated with persistent coughing led some patients to withdraw proactively to avoid judgment or discomfort.

“If you go out and you’re just coughing nonstop, wouldn’t people get annoyed? Right?” (P48).

Consequences of social isolation

Disruption of social connections

The cumulative effect of these antecedents was a profound disruption of social connections, leading to the atrophy of patients’ social networks, as they were unable to participate as they once did.

“Therefore, I just withdrew. I basically do not go to any of my friends’ activities anymore… there are places I want to go, but I just can’t.” (P23).

For some, this withdrawal escalated to a state of near-total seclusion, even from close family.

“I don’t even dare to get too close to my family… From the end of October until now, we’ve basically spent no time together—less than three minutes in total. It’s been a state of complete isolation.” (P48).

Deterioration of mental health

This social disconnection had severe psychological consequences, manifesting as feelings of powerlessness and pervasive negative emotions. The physical confinement of the home fostered a psychological sense of imprisonment.

“I’m trapped at home, it is truly like being in jail.” (P45).

This sense of powerlessness, combined with social deprivation, frequently gives rise to persistent loneliness and depression.

“I can’t find any sense of self-worth now, so sometimes I feel really low… I don’t even know what the meaning of my life in this world is anymore.” (P40).

Aspiration to break isolation

Despite the profound psychological toll, a powerful counternarrative emerged: a resilient aspiration to break free and reclaim a normal social life.

“I hope I can exercise normally… I hope I can be like other people… to actively participate in some family activities.” (P48).

This aspiration was also tied to a fundamental need to restore a sense of purpose and self-worth, often through work.

“I truly want to go out to work… I cannot find my sense of value.” (P30).

Strategies to Cope with social isolation

Pacing for participation

To cope with physical limitations, patients developed proactive strategies to manage their finite energy. One primary strategy was activity pacing, which involved carefully scheduling tasks to conserve energy for what mattered most, such as family interaction.

“Later, I learned to finish everything before noon. After 12 PM, I would not move at all, just lie in bed. Otherwise, I would not even have the energy to talk to my family at night.” (P45).

Another strategy involves modifying the execution of tasks, deliberately slowing down to prevent symptom exacerbation.

“Whatever I do, I have to do it slowly and gently. I can’t rush. The moment I rush, I might start [coughing].” (P46).

Leveraging social and peer support

To counteract isolation, patients actively sought to maintain or create social connections. This involved strengthening bonds with family and friends and finding unique value in peer support groups, where shared experience fostered understanding and psychological relief.

“Just chatting with friends there is normal. To be a little happier… if your body feels good and your mood is good, the illness might get better faster, right?” (P47).

Adapting through solitary pursuits

When physical limitations impeded the re-establishment of social connections, patients reported adopting inward-looking coping strategies to manage persistent loneliness. A key approach involved cultivating personal interests—such as reading or consuming digital media—to adapt to the inevitability of isolation.

“At home, I watch some TV, play with my phone, walk around the house a bit.” (P49).

Discussion

Existing literature has extensively documented social isolation among patients with IPF; however, most studies have examined this phenomenon through unidimensional lenses. For instance, Bramhill et al. [21] identified symptom burden and functional decline as key drivers of lost independence and activity restriction, which subsequently precipitate social isolation. Similarly, Sampson et al. [18] noted that deteriorating health compromises functional capacity, limiting patients’ mobility and social engagement. From a social perspective, Senanayake et al. [20] and Russell et al. [19] highlighted how limited public awareness and consequent stigmatization can foster feelings of alienation and social withdrawal. Despite these valuable insights, there is a lack of an integrative framework to systematically elucidate how physiological, psychological, and social factors interact to contribute to social isolation. The present study addresses this gap by delineating the complex antecedents of social isolation, its profound impact on patients’ lives, and the adaptive strategies employed amidst these multifaceted constraints.

At the individual level, this study demonstrates that functional physical limitations and psychosocial barriers synergistically drive social withdrawal. First, the progressive decline in physical capacity curtails patients’ engagement in social activities; pervasive fatigue and dyspnea render social interaction an almost unbearable physiological burden, aligning with chronic obstructive pulmonary disease (COPD) research that identifies these symptoms as “key stressors” [27]. Second, public misunderstanding of visible symptoms (e.g., coughing) and therapeutic interventions (e.g., oxygen therapy) can be internalized as perceived stigma. Repeated exposure to negative reactions fosters “anticipated stigma,” compelling patients to deliberately avoid social situations—a phenomenon similarly observed in Parkinson’s disease [28]. Ultimately, as symptom progression depletes physical and psychological reserves, social withdrawal evolves from a passive consequence of physiological decline into an active, albeit maladaptive, strategy to conserve limited energy amidst concurrent physical and psychological strain.

Extending beyond individual circumstances, external environmental barriers further exacerbate patient isolation. Our findings indicate that, compared to tangible obstacles in the built environment (e.g., stairs), atmospheric conditions represent a more pervasive and insidious form of exclusion. This exclusion manifests through acute symptom exacerbations triggered by air pollution or extreme weather, alongside potentially life-threatening infection risks in crowded spaces. Analogous environmental hazards have been documented in COPD, where they are regarded as key drivers of hospitalization and social withdrawal [29]. The synergistic impact of physical and atmospheric constraints severely curtails patients’ participation in social activities, thereby intensifying their isolation. Particularly within the context of China’s high population density, such environment-driven isolation warrants critical attention [30].

At the family level, this study reveals that families did not consistently function as the “social buffer” described in previous literature [14, 31]; rather, they could paradoxically exacerbate social isolation. Motivated by a desire to protect patients from fatigue or infection, family members often restricted social activities, resulting in a form of enforced social deprivation analogous to patterns observed in dementia care [32]. Simultaneously, patients experienced intense guilt and perceived burdensomeness as their familial role shifted from “contributor” to “care recipient.” This experience transcends individual psychology and is deeply rooted in East Asian collectivist expectations. On one hand, by limiting patients’ work and outings, family members fulfill a culturally sanctioned duty to protect vulnerable relatives. On the other hand, within this same cultural framework, individual self-worth is intrinsically tied to family contribution and reciprocity [33–35]. When patients are simultaneously “protected” yet incapacitated from contributing, this role conflict precipitates persistent self-devaluation, poignantly captured by the emic concept of fèirén (废人, a useless person). Thus, our findings illuminate how, in an East Asian context, an ostensibly caring family environment can inadvertently become a locus of identity crisis, offering a critical lens for understanding family dynamics in chronic illness.

While the high prevalence of psychological distress among patients with IPF is well documented [36], existing research has often been limited to documenting this phenomenon or its clinical correlates, failing to fully illuminate its underlying mechanisms. This study leverages self-determination theory (SDT) to illuminate this distress. SDT posits that psychological well-being is predicated on the satisfaction of three basic psychological needs: autonomy, competence, and relatedness [37]. The disease trajectory of IPF systematically erodes these three needs. The need for autonomy is undermined by compounding physical limitations and familial overprotection, culminating in a perceived loss of control. The need for competence is dismantled by a pervasive sense of powerlessness spanning both physical function and social roles, transforming a patient’s self-concept into that of a “useless person.” Finally, the need for relatedness is severed by social isolation, obstructing the fundamental human requirement for belonging. We argue that the profound deficit arising from this tripartite deprivation is a primary driver of psychological distress in this population. Crucially, this deficit manifests not only as distress but also as a powerful, countervailing aspiration, as our participants consistently articulated a profound yearning to restore social function, regain a sense of capability, and reclaim control over their lives.

Motivated by a heightened desire to restore a sense of control, patients employed a range of multidimensional, self-directed coping strategies. Physically, they focused on energy management and the modification of daily routines. Psychosocially, two distinct coping pathways emerged: an outwardly oriented path, where patients leveraged online communities for peer support to mitigate loneliness and negative emotions; and an inwardly oriented path, adopted when external connections were precluded, which involved cultivating solitary interests to facilitate emotional regulation and adaptation to the “new normal.” While these efforts align with chronic illness self-management literature emphasizing patient autonomy [38, 39], our findings suggest that these strategies function primarily as compensatory self-adjustments rather than fundamental solutions to the institutional and contextual drivers of isolation.

Implications for clinical practice

This study demonstrates that social isolation among patients with IPF is driven by a multifaceted interplay of symptom burden, environmental barriers, and family dynamics, which significantly exacerbates loneliness, depression, and psychological distress. At the family level, targeted caregiver education is warranted to help families strike a balance between facilitating social participation and ensuring infection control. At the health system level, enhancing accessibility through telehealth and implementing multidisciplinary care models—involving respiratory physicians, specialist nurses, mental health professionals, and social workers—are essential. These measures facilitate the integration of psychosocial assessment and support into routine follow-up as core components of IPF management.

Limitations and recommendations for future research

The findings of this study should be considered in light of several limitations that also represent avenues for future research. First, the study’s design as a secondary qualitative analysis inherently constrained our analytic depth; we could not engage in real-time probing of emerging narratives or analyze nonverbal cues from the original interviews. Second, the cross-sectional design prevents an analysis of the longitudinal trajectory of social isolation. Future longitudinal research is essential to track how patient needs and coping mechanisms evolve throughout the disease course, thereby informing the development of more precise, stage-specific interventions. Finally, our findings are deeply embedded in the Chinese cultural context; therefore, their transferability to other settings is undetermined. Cross-cultural comparative research is necessary to explore the transferability of these findings and develop culturally attuned support models globally.

Conclusion

This study reveals that social isolation in patients with IPF is a complex phenomenon arising from the synergistic interplay of physical limitations, iatrogenic effects, environmental barriers, shifting family dynamics, and the cultural context. Crucially, patients are not passive recipients of this predicament but active agents who demonstrate resilience and resourcefulness, particularly through their engagement in emerging digital communities. The “antecedent-consequence-coping” framework developed herein offers a systematic structure for both understanding and intervention. Ultimately, these findings call for a paradigm shift in clinical practice and public health policy: from a narrow biomedical model focused on organ function to a holistic social-ecological model that encompasses the patient’s entire lifeworld. As our research demonstrates, the detrimental effects of IPF are comprehensive, ranging from physiological to psychological and from individual to social. It follows that effective interventions must be similarly integrative. The ultimate goal must transcend the mere prolongation of biological life; it must be to help patients dismantle the “invisible cage” of isolation and uphold their fundamental right to live a complete and dignified life as valued members of society.

Abbreviations

IPF

Idiopathic Pulmonary Fibrosis

SD

Standard Deviation

SDT

Self-Determination Theory

COPD

Chronic Obstructive Pulmonary Disease

Authors’ contributions

SX, LC, and YZ conceived and designed the study. NL, XF, YZ, XZ, BY, YD, and SZ were responsible for data collection. SX, LC, and YZ drafted the manuscript. HC and YZ supervised the project and critically revised the manuscript. All authors read and approved the final manuscript.

Funding

This work was supported by Boehringer Ingelheim and the Natural Science Foundation of China (No. 82404387).

Data availability

The datasets generated and/or analyzed during the current study are not publicly available due to the sensitive nature of the qualitative interview data and to protect participant privacy but are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

This study was conducted in accordance with the Declaration of Helsinki and approved by the Medical Science Research Ethics Committee of Peking University Third Hospital (Approval No. 2024-188-02).All participants provided written informed consent for their anonymized data to be used in publications.

Consent for publication

Not Applicable.

Competing interests

The authors declare no competing interests.