Perceived loss of control: Grounded theory analysis of illness perceptions among patients with interstitial lung disease

Perceived loss of control: Grounded theory analysis of illness perceptions among patients with interstitial lung disease | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Perceived loss of control: Grounded theory analysis of illness perceptions among patients with interstitial lung disease Jiashuo Xu, Qian Liu, Fangyuan Ren, Zhiling Sun, Bing Yang, Juan Zhang, and 3 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7173257/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background To explore the illness perceptions of patients with interstitial lung disease and their development over the course of the disease. Methods This study recruited 20 patients with interstitial lung disease between October 2023 and January 2024 using purposive, convenience, and theoretical sampling. The collected data were analyzed using initial, focused, and theoretical coding. Results Through grounded theory analysis of 20 in-depth interviews on illness perceptions in patients with interstitial lung disease, we developed the ‘Perceived Loss of Control’ framework, which highlights the negativity of illness perceptions in these patients and reveals multiple challenges that patients perceive during the progression of interstitial lung disease—challenges that are beyond their control and management. By emphasizing controllability, the application of the existing Common Sense Model in the field of ILD interventions has been expanded. Conclusions Policy makers, medical institutions, communities, and other stakeholders should jointly participate in localized interventions targeting illness perceptions among patients with interstitial lung disease in China. By enhancing patients' sense of control, their illness perceptions may be improved. Grounded theory Illness perception Interstitial lung disease Common Sense Model Figures Figure 1 1. Background Interstitial lung disease (ILD) is a general term for diffuse pulmonary parenchymal diseases. Clinically, it is characterized by varying degrees of alveolitis and hyperplasia of interstitial collagen. During inflammatory injury and repair, pulmonary fibrosis gradually develops, ultimately leading to respiratory failure and death( 1 ). Between 1990 and 2019, the age-standardized prevalence and mortality rates, and the disability-adjusted life years (DALYs) for ILD showed modest increases. This trend was more pronounced in regions with high social deprivation indices (SDI)( 2 ). Studies have shown that early diagnosis and treatment are crucial to patient prognosis( 3 ). However, there are significant international differences in the preventive, diagnostic, and treatment strategies used( 4 ). Studies have shown that patients’ illness perceptions (IPs) play a key role in many diseases( 5 ). These perceptions develop through complex interactions between biological, psychological, and social factors. The IPs of patients with different diseases have been found to change over time in phases corresponding to the stages of disease progression( 6 – 8 ). Patients’ IPs include, and are affected by, multiple elements, such as the patient’s understanding of the disease, their psychological state, and their quality of life. Patients with ILD have been found to exhibit particularly negative IPs( 9 ). Yet, IPs are known to directly affect the ability to implement self-management strategies and overcome disease-related difficulties. This, in turn, affects overall quality of life( 10 ). Exploring patients’ perceptions of their ILD may enhance our understanding and management of the condition, thereby improving patients’ quality of life and survival rates. This study aims to explore the characteristics and development of IPs in patients with ILD. Understanding this process can facilitate the creation of interventions tailored to the characteristics of different stages. Psychological and practical interventions designed to improve patients’ IPs and treatment adherence may directly affect their rehabilitation outcomes. This patient-centered study uses grounded theory to explore the development of IPs in patients with ILD. It is hoped that the results may serve as a theoretical basis for the development of a professional intervention framework. 2. Methods This study was based on a qualitative cross-sectional design that used grounded theory. 2.1 Participants All procedures performed in this study were conducted in accordance with the ethical standards of the 1964 Declaration of Helsinki and its later amendments. The inclusion criteria were: ( 1 ) a diagnosis of ILD based on the guidelines of the British Thoracic Society( 11 ) and the Chinese expert consensus published in 2023 ( 12 ); ( 2 ) aged 18 years or older; ( 3 ) aware of their condition; and ( 4 ) normal hearing and comprehension. The exclusion criteria were: ( 1 ) mental illness or cognitive impairment; ( 2 ) lung function insufficient to support prolonged interviews. The sample size was based on data saturation. Between October 2023 and January 2024, the researchers visited the Respiratory Outpatient Department and inpatient wards for ILD patients of the Affiliated Hospital of Xuzhou Medical University. The first five patients were recruited using purposive sampling. After completing interviews with these five patients, convenience sampling was used to obtain more information. Data saturation was achieved after 15 interviewees. To build and refine a theory based on the data collected, the researchers recruited five more patients with particular characteristics and experiences using theoretical sampling. Finally, 20 patients participated in the study (Table 1 ). Table 1 Participants’ demographic and clinical information Patient number Age Sex Disease progression Disease stage Medical insurance Caregiver N1 66 Male PF Multiple AE Yes Spouse N2 53 Male ILD First AE No Spouse N3 54 Female PF Multiple AE No Spouse N4 60 Male PF Multiple AE Yes Spouse N5 47 Male ILD First AE Yes Spouse N6 49 Female PF Multiple AE Yes Child N7 50 Male ILD First TRT Yes Spouse N8 50 Female ILD First TRT Yes Spouse N9 51 Male ILD First TRT Yes Child N10 55 Male PF Multiple AE No Spouse N11 49 Female ILD First TRT Yes Child N12 53 Male ILD Multiple AE Yes Spouse N13 61 Male PF Multiple AE Yes Spouse N14 70 Female ILD First AE No Spouse N15 72 Male PF First AE No Child N16 54 Male ILD First TRT Yes Child N17 56 Female PF Multiple AE Yes Child N18 60 Male ILD First TRT Yes Spouse N19 61 Female PF Multiple AE Yes Child N20 55 Male PF First AE Yes Spouse AE, acute exacerbation; ILD, interstitial lung disease; PF, pulmonary fibrosis; TRT, treatment 2.2 The role of the researchers In qualitative research, the researchers need to reflect on his or her role as a research instrument. In this case, the researchers who conducted the interviews were clinical nurses with master’s degrees and experience in qualitative research. The researchers had established good relationships with the patients during clinical work and were regarded by the patients as professional medical practitioners. The researchers’ knowledge of ILD was obtained through work experience and literature reviews. During the study, the researchers avoided subjective biases and enhanced their sensitivity to the research questions by writing reflection logs, keeping notes, and participating in group discussions. 2.3 Data collection Data were collected using semi-structured interviews conducted in empty wards. Patients were properly accommodated in their beds, and treatments were not interrupted. Each interview lasted about 30 min. The researcher began the interview by explaining the purpose of the study and creating a relaxed atmosphere. The interview outline developed for this study was based on literature reviews and pre-interview team discussions. Additional data are provided in the supplementary materials (S1). Researchers began the interviews with the preliminary question “What changes has the disease brought to your life?” The main questions then posed were: “What have you felt since you were diagnosed with ILD?” and “Will these feelings change with the occurrence of special events?” During the interviews, the researchers responded encouragingly to the patients, but did not interrupt or comment. All the language expressions were recorded by the researchers using voice recorders. The patients’ facial expressions and body language were observed, and questions were adapted to the information provided by each interviewee. 2.4 Data analysis After the interviews, the researchers transcribed the recordings verbatim and used MAXQDA software (Version 2018, VERBI Software GmbH, Berlin, Germany) to analyze the data. The data was initially coded line by line, categorizing and integrating the most frequent and significant codes, which were then refined into focused codes. Once data saturation was achieved, the researchers combined theoretical sampling and information from notes to conduct more abstract theoretical coding of the focused codes. During theoretical coding, charts were created to represent the results visually, which helped to identify any shortcomings or oversights and enhanced the analysis. A constant comparative method was applied throughout the analysis to refine the results. 3. Results After data analysis, the relationships between the categories were gradually clarified (Fig. 1 ). During the period between symptom onset and the first treatment after diagnosis, the patients reported their first experiences of physical discomfort and becoming unable to manage these symptoms alone. As their conditions worsened, the patients were eager to find more timely and effective treatments, but experienced a sense of medical helplessness. Over time, the economic cost of treatment was often found to be disproportionate to the benefits obtained from it. This led to negative psychological states and prevented the maintenance of positive, optimistic attitudes. 3.1 Symptom-focused illness perception The initial IPs of patients with ILD were found to be predominantly symptom-focused. They included the experience of general malaise and focused on the effects of the illness on daily life. 3.1.1 General malaise Patients’ initial physical symptoms vary according to the different etiologies. Most experience respiratory discomfort. Fatigue, fever, night sweats, and weight loss are also common. N7:I always cough at night, and when I cough, I sweat profusely and lose a significant amount of weight. N3: In addition to shortness of breath, my arms and legs are always numb, so I can’t walk too far. 3.1.2 Effects on daily life Patients with ILD notice that their physical symptoms begin to affect their daily lives. N8: After frequently feeling physically weak, I stopped working and stayed at home to help take care of my grandson. Later on, even taking care of my grandson felt very exhausting. N14: Once, while cleaning the floor at home, I felt very breathless and was surprised that I couldn’t even handle household chores. 3.2 Treatment-focused illness perception With the progression of the disease, the patients’ IPs became more treatment-focused. Specifically, this included frustration due to difficulty obtaining a definitive diagnosis, limited treatment methods, and the heavy economic burden of treatment costs. 3.2.1 Delayed diagnosis Our interviewees felt that the current medical capacity to diagnose and identify ILD is poor. N1: Since 2015, I have been experiencing frequent dry coughs at night. After undergoing X-ray examinations, I had three follow-up check-ups, but the doctors failed to diagnose my condition. In 2018, I began experiencing swelling in my upper limbs. I consulted specialists in gastroenterology, general surgery, neurology, and rheumatology. It wasn’t until 2020, after visiting a respiratory specialist, that I was finally diagnosed. The diagnosis was delayed for five years. N4: I underwent CT scans in different hospitals five times over eight months. Initially, I had a fever and was told that there was only inflammation. After receiving an infusion, I improved for a few days, but then I developed a fever again and experienced numbness in my fingertips. I went to another hospital and received another infusion. After that, I had recurrent fevers. Finally, I experienced shortness of breath, called 120, and was admitted to the emergency room, where I was diagnosed. 3.2.2 Limited treatment methods The current treatment regimen for ILD has many side effects and can only slow the progression of the disease. Patients experienced a gradual recognition of the limited treatment options available. N12: At present, there is no effective treatment for this disease. I went to Beijing and was told that there was a new method, but it was not suitable for my disease type, so the treatment options available to me are currently limited to these. N17: After taking the medicine, I experienced stomach acid and bloating. I thought I could do nothing but take the medicine, so I learned to do pulmonary rehabilitation exercises at home by myself, but I became out of breath after just a few minutes. 3.2.3 Heavy economic burden At present, the cost of ILD treatment and regular follow-up examinations is high. Therefore, almost all of our interviewees reported treatment to be a heavy economic burden. N3: We spent too much money. If we didn’t have children to help us, we would not be able to bear it by ourselves. I felt that I was dragging my children down and didn’t know how much longer I could take this medicine. N4: If you have the money, you should take this medicine. If you don’t take it, you could die, so you can only buy it, regardless of how expensive it is. Although there is medical insurance, the amount of out-of-pocket expenses remains too high for most families to afford easily. 3.3 Emotion-focused illness perception The physical symptoms of ILD are frequently aggravated, and the economic cost is disproportionate to the treatment effects. As a result, the IPs of patients with ILD eventually become emotion-focused, encompassing learned helplessness and anticipatory grief. 3.3.1 Learned helplessness After experiencing multiple acute exacerbations, the interviewees felt that, no matter what they do, their health cannot be improved. N1: I know this disease can’t be cured. I’ve said I don’t want to treat it, but the kids don’t agree. N13: I spent money on my illness, but it never got better. I wanted to give up, but I was afraid of death. I didn’t know what to do, so I just maintained the status quo. 3.3.2 Anticipatory grief Different types of ILD progress at different rates, and patients experience anticipatory grief when faced with irreversible disease-induced deterioration of their health and the impending threat of death. N3: I know what will happen, but when it happens is unknown. I don’t want to say it, because my family and I will cry if I say it. N6: In fact, I know what is going on in my heart, but I don’t have the courage to say it out loud. I lie to myself and say there is hope . 4. Discussion 4.1 Significance of exploring illness perceptions According to the common sense model (CSM), when an individual acquires a disease, their IPs help them to make sense of the experience and affect the patient’s self-management and quality of life( 13 ). The theorists behind the CSM recommend interventions tailored to the patients’ IPs to improve disease outcomes. This study found that the development of IP in patients with ILD consists of gradual recognition of the uncontrollability of the disease, which is experienced as a sense of helplessness. This process involves a symptom-focused stage, a treatment-focused stage, and an emotion-focused stage. These stages can overlap and influence each other. Providing phased interventions for ILD patients based on these stages may help improve their IP, leading to better self-management of the disease. 4.2 Helping patients to identify symptoms Symptom focus is the first stage in the development of IP in patients with ILD. ILD symptoms are often mistakenly attributed to aging, obesity, or respiratory infections. Failure to recognize the illness leads patients to adjust their health behaviors to alleviate physical symptoms, which can delay diagnosis and treatment. According to the health belief model, the first step in perceiving health risks is recognition of illness severity. Patients’ perceptions of the severity of their illness not only affect their adherence to treatment but also their quality of life. Policies need to be developed to promote and fund research and public health education programs on ILD. Quantitative data can be used by medical staff to help patients grasp the severity of ILD. For example, the bookmarking method can improve communication between doctors and patients when assessing the degree of dyspnea( 14 ), and SP1 biomarkers can help CTD-ILD patients better understand their health status( 15 ). Patients’ self-management should not be limited to daily health behaviors, and the information needs of ILD patients are important ( 16 ). In recent years, digital devices have improved patient access to disease information, self-monitoring of health status, professional support, and health education. Multi-disciplinary cooperation can also improve the provision of disease information to ILD patients( 17 ). 4.3 Improving patients’ treatment experiences Treatment focus is a central stage in the development of IP in patients with ILD. A Latin American study found that patients with ILD are often diagnosed at an advanced stage of the disease due to the complexity of diagnosis. In 2023, China released an expert consensus on the clinical ( 18 ) and multi-disciplinary management of ILD ( 12 ). This has enhanced clinical practitioners’ understanding of ILD and standardized Chinese procedures for ILD-MDD. The widespread application of these procedures is expected to improve the service level for ILD patients. In terms of treatment, drugs like pirfenidone and nintedanib can effectively slow the progression of certain types of ILD, but current treatments have significant side effects. In recent years, inhalation methods that enhance local drug concentrations while minimizing systemic toxicity have opened up new possibilities for ILD treatment ( 19 ). Still, the economic cost of long-term medication and other medical expenses is high. A systematic review found that, in most high-income countries, nintedanib is more cost-effective than pirfenidone and can reduce disease progression, improve lung function, and manage symptoms. However, further research is needed in low- and middle-income countries, with comparisons of different healthcare systems and willingness-to-pay thresholds. Our findings suggest that policymakers should explore strategies to reduce drug costs and improve access in resource-limited regions ( 20 ). For some types of ILD, lung transplantation is considered the best treatment. However, there is no unified view on the prognosis of patients with ILD after lung transplantations. Some believe that the survival rates of AE-ILD patients who receive lung transplantations are significantly reduced( 21 ). Others argue that the therapeutic outcomes of lung transplantation for AE-ILD patients are comparable to those for stable ILD patients. The prognosis following lung transplantation among different ILD subtypes needs to be further explored( 22 ). Medical institutions should continue to develop non-drug treatment methods that facilitate individualized treatment plans for different ILD patients. 4.4 Promoting emotion management The emotion-focused stage is an essential aspect of the development of IPs among ILD patients. After experiencing multiple uncontrollable disease exacerbations, patients develop learned helplessness, and “powerlessness” was frequently mentioned in our interviews. This can lower motivation and increase the risk of depression( 23 ). A study has found that 60.3% and 57.1% of ILD patients have symptoms of anxiety and depression, respectively ( 24 ). Patients become passive and may even consider giving up treatment. In such cases, a strong social support system is particularly important. It has been found that social support can alleviate learned helplessness in lung cancer patients. However, the relationship between social support and learned helplessness is mediated by individual levels of psychological resilience and self-efficacy. Healthcare providers should aim to offer adequate social support to ILD patients and adopt strategies tailored to individual levels of psychological resilience and self-efficacy ( 25 ). ILD patients also need to feel supported and loved, and to have a sense of connection or belonging. This can affect their happiness and sustain positive behavioral change. Joanna ( 26 ) suggests that peer support can enhance patients’ confidence in their ability to manage their pulmonary fibrosis. Medical institutions should aim to establish patient support groups that offer psychological support and disease management advice. We found that ILD patients who have experienced multiple acute exacerbations suffer anticipatory grief. According to the 2023 European Respiratory Society Clinical Practice Guidelines( 27 ), the unpredictable course of chronic respiratory diseases and the current focus on urgent needs have led to delays in the provision of palliative care for ILD patients. In clinical practice, patient-reported outcomes (PROs) can help doctors to better understand the health status and care priorities of patients. Healthcare providers should establish palliative care teams tailored to national conditions as soon as possible, using PROs to inform the provision of physical, psychological, and emotional support that meets the needs of patients. 4.5 Clinical implications Implementing public health education programs to help patients recognize symptoms as early as possible, continuing to research treatment methods, and providing appropriate social support in accordance with China’s localized national conditions may help improve the IPs of patients with ILD, thereby influencing rehabilitation outcomes. 4.6 Study limitations This study did not look into differences in the IPs of patients with different types of ILD. It was also limited by the inclusion of patients from a single region of China, which may prevent the generalization of the results to other regions with different socioeconomic conditions. Future research should explore and compare the IPs of patients with different types of ILDs and from different regions. 5. Conclusions We hope that the findings of this study will contribute to the understanding among medical personnel of the development and connotations of IP in patients with ILD, and provide a theoretical basis for the implementation of relevant interventions. Abbreviations ILD Interstitial lung disease DALYs Disability-adjusted life years SDI Social deprivation indices IPs Illness perceptions AE Acute exacerbation PF Pulmonary fibrosis TRT Treatment CSM Common sense model PROs Patient-reported outcomes Declarations Ethics approval and consent to participate The study was approved by the Human Research Ethics Committee of the Affiliated Hospital of Xuzhou Medical University (approval no. 2023-KL254-01). All participants provided written informed consent before participating in the study. Consent for publication Not applicable Competing interests The authors declare that they have no competing interests. Funding This study was funded by the Xuzhou Science and Technology Bureau (KC2245) and the Jiangsu Commission of Health (H2023005). Author Contribution XJ and BC contributed to the study conception and design and provided supervision. Patient recruitment, material preparation, and data collection were performed by JX and QL. Data analysis and interpretation of results were performed by JX and FR. The first draft of the manuscript was written by JX. All authors reviewed previous versions of the manuscript. All authors have read and approved the final manuscript. Acknowledgement Authors would like to thank all the staff of the Department of Respiratory and Critical Care Medicine of the Affiliated Hospital of Xuzhou Medical University for their help in this study. Authors also like to express gratitude to funding programs for supporting this study. 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European Respiratory Society clinical practice guideline: palliative care for people with COPD or interstitial lung disease. Eur Respir J. 2023;62:2202014. Additional Declarations No competing interests reported. Supplementary Files S1.docx Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. 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04:53:21","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7173257/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7173257/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":91121115,"identity":"0657e84b-0121-4fbd-b35e-a54152fca20a","added_by":"auto","created_at":"2025-09-11 19:08:32","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":131760,"visible":true,"origin":"","legend":"\u003cp\u003ePerceived Loss of Control: the development of illness perceptions in patients with interstitial lung diseases\u003c/p\u003e","description":"","filename":"floatimage1.png","url":"https://assets-eu.researchsquare.com/files/rs-7173257/v1/83bc4f72ae5af843fd80ffa0.png"},{"id":108086936,"identity":"3f9c3540-d6f2-44f1-be5c-a2102c4e91f6","added_by":"auto","created_at":"2026-04-29 08:41:37","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":400991,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7173257/v1/30384085-2740-4e65-9d00-cc8849b8618c.pdf"},{"id":91121116,"identity":"7646fc8f-0f25-47fa-9875-1de3983bfac2","added_by":"auto","created_at":"2025-09-11 19:08:32","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":14760,"visible":true,"origin":"","legend":"","description":"","filename":"S1.docx","url":"https://assets-eu.researchsquare.com/files/rs-7173257/v1/07f866aa70386779d15c0ef0.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Perceived loss of control: Grounded theory analysis of illness perceptions among patients with interstitial lung disease","fulltext":[{"header":"1. Background","content":"\u003cp\u003eInterstitial lung disease (ILD) is a general term for diffuse pulmonary parenchymal diseases. Clinically, it is characterized by varying degrees of alveolitis and hyperplasia of interstitial collagen. During inflammatory injury and repair, pulmonary fibrosis gradually develops, ultimately leading to respiratory failure and death(\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Between 1990 and 2019, the age-standardized prevalence and mortality rates, and the disability-adjusted life years (DALYs) for ILD showed modest increases. This trend was more pronounced in regions with high social deprivation indices (SDI)(\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). Studies have shown that early diagnosis and treatment are crucial to patient prognosis(\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). However, there are significant international differences in the preventive, diagnostic, and treatment strategies used(\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eStudies have shown that patients\u0026rsquo; illness perceptions (IPs) play a key role in many diseases(\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). These perceptions develop through complex interactions between biological, psychological, and social factors. The IPs of patients with different diseases have been found to change over time in phases corresponding to the stages of disease progression(\u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Patients\u0026rsquo; IPs include, and are affected by, multiple elements, such as the patient\u0026rsquo;s understanding of the disease, their psychological state, and their quality of life. Patients with ILD have been found to exhibit particularly negative IPs(\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). Yet, IPs are known to directly affect the ability to implement self-management strategies and overcome disease-related difficulties. This, in turn, affects overall quality of life(\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Exploring patients\u0026rsquo; perceptions of their ILD may enhance our understanding and management of the condition, thereby improving patients\u0026rsquo; quality of life and survival rates.\u003c/p\u003e\u003cp\u003eThis study aims to explore the characteristics and development of IPs in patients with ILD. Understanding this process can facilitate the creation of interventions tailored to the characteristics of different stages. Psychological and practical interventions designed to improve patients\u0026rsquo; IPs and treatment adherence may directly affect their rehabilitation outcomes. This patient-centered study uses grounded theory to explore the development of IPs in patients with ILD. It is hoped that the results may serve as a theoretical basis for the development of a professional intervention framework.\u003c/p\u003e"},{"header":"2. Methods","content":"\u003cp\u003eThis study was based on a qualitative cross-sectional design that used grounded theory.\u003c/p\u003e\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003e2.1 Participants\u003c/h2\u003e\u003cp\u003e All procedures performed in this study were conducted in accordance with the ethical standards of the 1964 Declaration of Helsinki and its later amendments. The inclusion criteria were: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) a diagnosis of ILD based on the guidelines of the British Thoracic Society(\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e) and the Chinese expert consensus published in 2023 (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e); (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) aged 18 years or older; (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) aware of their condition; and (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) normal hearing and comprehension. The exclusion criteria were: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) mental illness or cognitive impairment; (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) lung function insufficient to support prolonged interviews. The sample size was based on data saturation. Between October 2023 and January 2024, the researchers visited the Respiratory Outpatient Department and inpatient wards for ILD patients of the Affiliated Hospital of Xuzhou Medical University. The first five patients were recruited using purposive sampling. After completing interviews with these five patients, convenience sampling was used to obtain more information. Data saturation was achieved after 15 interviewees. To build and refine a theory based on the data collected, the researchers recruited five more patients with particular characteristics and experiences using theoretical sampling. Finally, 20 patients participated in the study (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eParticipants\u0026rsquo; demographic and clinical information\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"7\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" 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TRT\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eChild\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN10\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e55\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003ePF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eMultiple AE\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eSpouse\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN11\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e49\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eILD\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eFirst TRT\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eChild\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e53\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eILD\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eMultiple AE\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eSpouse\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN13\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e61\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003ePF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eMultiple AE\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eSpouse\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN14\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e70\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eILD\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eFirst AE\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eSpouse\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN15\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e72\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003ePF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eFirst AE\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eChild\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN16\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e54\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eILD\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eFirst TRT\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eChild\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN17\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e56\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003ePF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eMultiple AE\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eChild\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN18\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e60\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eILD\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eFirst TRT\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eSpouse\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN19\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e61\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003ePF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eMultiple AE\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eChild\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN20\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e55\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003ePF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eFirst AE\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eSpouse\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"7\" nameend=\"c7\" namest=\"c1\"\u003e\u003cp\u003eAE, acute exacerbation; ILD, interstitial lung disease; PF, pulmonary fibrosis; TRT, treatment\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec4\" class=\"Section2\"\u003e\u003ch2\u003e2.2 The role of the researchers\u003c/h2\u003e\u003cp\u003eIn qualitative research, the researchers need to reflect on his or her role as a research instrument. In this case, the researchers who conducted the interviews were clinical nurses with master\u0026rsquo;s degrees and experience in qualitative research. The researchers had established good relationships with the patients during clinical work and were regarded by the patients as professional medical practitioners. The researchers\u0026rsquo; knowledge of ILD was obtained through work experience and literature reviews. During the study, the researchers avoided subjective biases and enhanced their sensitivity to the research questions by writing reflection logs, keeping notes, and participating in group discussions.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec5\" class=\"Section2\"\u003e\u003ch2\u003e2.3 Data collection\u003c/h2\u003e\u003cp\u003eData were collected using semi-structured interviews conducted in empty wards. Patients were properly accommodated in their beds, and treatments were not interrupted. Each interview lasted about 30 min. The researcher began the interview by explaining the purpose of the study and creating a relaxed atmosphere. The interview outline developed for this study was based on literature reviews and pre-interview team discussions. Additional data are provided in the supplementary materials (S1). Researchers began the interviews with the preliminary question \u003cem\u003e\u0026ldquo;What changes has the disease brought to your life?\u0026rdquo;\u003c/em\u003e The main questions then posed were: \u003cem\u003e\u0026ldquo;What have you felt since you were diagnosed with ILD?\u0026rdquo; and \u0026ldquo;Will these feelings change with the occurrence of special events?\u0026rdquo;\u003c/em\u003e During the interviews, the researchers responded encouragingly to the patients, but did not interrupt or comment. All the language expressions were recorded by the researchers using voice recorders. The patients\u0026rsquo; facial expressions and body language were observed, and questions were adapted to the information provided by each interviewee.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e\u003ch2\u003e2.4 Data analysis\u003c/h2\u003e\u003cp\u003eAfter the interviews, the researchers transcribed the recordings verbatim and used MAXQDA software (Version 2018, VERBI Software GmbH, Berlin, Germany) to analyze the data. The data was initially coded line by line, categorizing and integrating the most frequent and significant codes, which were then refined into focused codes. Once data saturation was achieved, the researchers combined theoretical sampling and information from notes to conduct more abstract theoretical coding of the focused codes. During theoretical coding, charts were created to represent the results visually, which helped to identify any shortcomings or oversights and enhanced the analysis. A constant comparative method was applied throughout the analysis to refine the results.\u003c/p\u003e\u003c/div\u003e"},{"header":"3. Results","content":"\u003cp\u003eAfter data analysis, the relationships between the categories were gradually clarified (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). During the period between symptom onset and the first treatment after diagnosis, the patients reported their first experiences of physical discomfort and becoming unable to manage these symptoms alone. As their conditions worsened, the patients were eager to find more timely and effective treatments, but experienced a sense of medical helplessness. Over time, the economic cost of treatment was often found to be disproportionate to the benefits obtained from it. This led to negative psychological states and prevented the maintenance of positive, optimistic attitudes.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003e3.1 Symptom-focused illness perception\u003c/h2\u003e\u003cp\u003eThe initial IPs of patients with ILD were found to be predominantly symptom-focused. They included the experience of general malaise and focused on the effects of the illness on daily life.\u003c/p\u003e\u003cdiv id=\"Sec9\" class=\"Section3\"\u003e\u003ch2\u003e3.1.1 General malaise\u003c/h2\u003e\u003cp\u003ePatients\u0026rsquo; initial physical symptoms vary according to the different etiologies. Most experience respiratory discomfort. Fatigue, fever, night sweats, and weight loss are also common.\u003c/p\u003e\u003cp\u003e\u003cem\u003eN7:I always cough at night, and when I cough, I sweat profusely and lose a significant amount of weight.\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eN3: In addition to shortness of breath, my arms and legs are always numb, so I can\u0026rsquo;t walk too far.\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec10\" class=\"Section3\"\u003e\u003ch2\u003e3.1.2 Effects on daily life\u003c/h2\u003e\u003cp\u003ePatients with ILD notice that their physical symptoms begin to affect their daily lives.\u003c/p\u003e\u003cp\u003e\u003cem\u003eN8: After frequently feeling physically weak, I stopped working and stayed at home to help take care of my grandson. Later on, even taking care of my grandson felt very exhausting.\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eN14: Once, while cleaning the floor at home, I felt very breathless and was surprised that I couldn\u0026rsquo;t even handle household chores.\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\u003ch2\u003e3.2 Treatment-focused illness perception\u003c/h2\u003e\u003cp\u003eWith the progression of the disease, the patients\u0026rsquo; IPs became more treatment-focused. Specifically, this included frustration due to difficulty obtaining a definitive diagnosis, limited treatment methods, and the heavy economic burden of treatment costs.\u003c/p\u003e\u003cdiv id=\"Sec12\" class=\"Section3\"\u003e\u003ch2\u003e3.2.1 Delayed diagnosis\u003c/h2\u003e\u003cp\u003eOur interviewees felt that the current medical capacity to diagnose and identify ILD is poor.\u003c/p\u003e\u003cp\u003e\u003cem\u003eN1: Since 2015, I have been experiencing frequent dry coughs at night. After undergoing X-ray examinations, I had three follow-up check-ups, but the doctors failed to diagnose my condition. In 2018, I began experiencing swelling in my upper limbs. I consulted specialists in gastroenterology, general surgery, neurology, and rheumatology. It wasn\u0026rsquo;t until 2020, after visiting a respiratory specialist, that I was finally diagnosed. The diagnosis was delayed for five years.\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eN4: I underwent CT scans in different hospitals five times over eight months. Initially, I had a fever and was told that there was only inflammation. After receiving an infusion, I improved for a few days, but then I developed a fever again and experienced numbness in my fingertips. I went to another hospital and received another infusion. After that, I had recurrent fevers. Finally, I experienced shortness of breath, called 120, and was admitted to the emergency room, where I was diagnosed.\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec13\" class=\"Section3\"\u003e\u003ch2\u003e3.2.2 Limited treatment methods\u003c/h2\u003e\u003cp\u003eThe current treatment regimen for ILD has many side effects and can only slow the progression of the disease. Patients experienced a gradual recognition of the limited treatment options available.\u003c/p\u003e\u003cp\u003e\u003cem\u003eN12: At present, there is no effective treatment for this disease. I went to Beijing and was told that there was a new method, but it was not suitable for my disease type, so the treatment options available to me are currently limited to these.\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eN17: After taking the medicine, I experienced stomach acid and bloating. I thought I could do nothing but take the medicine, so I learned to do pulmonary rehabilitation exercises at home by myself, but I became out of breath after just a few minutes.\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec14\" class=\"Section3\"\u003e\u003ch2\u003e3.2.3 Heavy economic burden\u003c/h2\u003e\u003cp\u003eAt present, the cost of ILD treatment and regular follow-up examinations is high. Therefore, almost all of our interviewees reported treatment to be a heavy economic burden.\u003c/p\u003e\u003cp\u003e\u003cem\u003eN3: We spent too much money. If we didn\u0026rsquo;t have children to help us, we would not be able to bear it by ourselves. I felt that I was dragging my children down and didn\u0026rsquo;t know how much longer I could take this medicine.\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eN4: If you have the money, you should take this medicine. If you don\u0026rsquo;t take it, you could die, so you can only buy it, regardless of how expensive it is. Although there is medical insurance, the amount of out-of-pocket expenses remains too high for most families to afford easily.\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv id=\"Sec15\" class=\"Section2\"\u003e\u003ch2\u003e3.3 Emotion-focused illness perception\u003c/h2\u003e\u003cp\u003eThe physical symptoms of ILD are frequently aggravated, and the economic cost is disproportionate to the treatment effects. As a result, the IPs of patients with ILD eventually become emotion-focused, encompassing learned helplessness and anticipatory grief.\u003c/p\u003e\u003cdiv id=\"Sec16\" class=\"Section3\"\u003e\u003ch2\u003e3.3.1 Learned helplessness\u003c/h2\u003e\u003cp\u003eAfter experiencing multiple acute exacerbations, the interviewees felt that, no matter what they do, their health cannot be improved.\u003c/p\u003e\u003cp\u003e\u003cem\u003eN1: I know this disease can\u0026rsquo;t be cured. I\u0026rsquo;ve said I don\u0026rsquo;t want to treat it, but the kids don\u0026rsquo;t agree.\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eN13: I spent money on my illness, but it never got better. I wanted to give up, but I was afraid of death. I didn\u0026rsquo;t know what to do, so I just maintained the status quo.\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec17\" class=\"Section3\"\u003e\u003ch2\u003e3.3.2 Anticipatory grief\u003c/h2\u003e\u003cp\u003eDifferent types of ILD progress at different rates, and patients experience anticipatory grief when faced with irreversible disease-induced deterioration of their health and the impending threat of death.\u003c/p\u003e\u003cp\u003e\u003cem\u003eN3: I know what will happen, but when it happens is unknown. I don\u0026rsquo;t want to say it, because my family and I will cry if I say it.\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eN6: In fact, I know what is going on in my heart, but I don\u0026rsquo;t have the courage to say it out loud. I lie to myself and say there is hope\u003c/em\u003e.\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e"},{"header":"4. Discussion","content":"\u003cdiv id=\"Sec19\" class=\"Section2\"\u003e\u003ch2\u003e4.1 Significance of exploring illness perceptions\u003c/h2\u003e\u003cp\u003eAccording to the common sense model (CSM), when an individual acquires a disease, their IPs help them to make sense of the experience and affect the patient\u0026rsquo;s self-management and quality of life(\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). The theorists behind the CSM recommend interventions tailored to the patients\u0026rsquo; IPs to improve disease outcomes. This study found that the development of IP in patients with ILD consists of gradual recognition of the uncontrollability of the disease, which is experienced as a sense of helplessness. This process involves a symptom-focused stage, a treatment-focused stage, and an emotion-focused stage. These stages can overlap and influence each other. Providing phased interventions for ILD patients based on these stages may help improve their IP, leading to better self-management of the disease.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec20\" class=\"Section2\"\u003e\u003ch2\u003e4.2 Helping patients to identify symptoms\u003c/h2\u003e\u003cp\u003eSymptom focus is the first stage in the development of IP in patients with ILD. ILD symptoms are often mistakenly attributed to aging, obesity, or respiratory infections. Failure to recognize the illness leads patients to adjust their health behaviors to alleviate physical symptoms, which can delay diagnosis and treatment. According to the health belief model, the first step in perceiving health risks is recognition of illness severity. Patients\u0026rsquo; perceptions of the severity of their illness not only affect their adherence to treatment but also their quality of life. Policies need to be developed to promote and fund research and public health education programs on ILD. Quantitative data can be used by medical staff to help patients grasp the severity of ILD. For example, the bookmarking method can improve communication between doctors and patients when assessing the degree of dyspnea(\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e), and SP1 biomarkers can help CTD-ILD patients better understand their health status(\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). Patients\u0026rsquo; self-management should not be limited to daily health behaviors, and the information needs of ILD patients are important (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). In recent years, digital devices have improved patient access to disease information, self-monitoring of health status, professional support, and health education. Multi-disciplinary cooperation can also improve the provision of disease information to ILD patients(\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e).\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec21\" class=\"Section2\"\u003e\u003ch2\u003e4.3 Improving patients\u0026rsquo; treatment experiences\u003c/h2\u003e\u003cp\u003eTreatment focus is a central stage in the development of IP in patients with ILD. A Latin American study found that patients with ILD are often diagnosed at an advanced stage of the disease due to the complexity of diagnosis. In 2023, China released an expert consensus on the clinical (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e) and multi-disciplinary management of ILD (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). This has enhanced clinical practitioners\u0026rsquo; understanding of ILD and standardized Chinese procedures for ILD-MDD. The widespread application of these procedures is expected to improve the service level for ILD patients. In terms of treatment, drugs like pirfenidone and nintedanib can effectively slow the progression of certain types of ILD, but current treatments have significant side effects. In recent years, inhalation methods that enhance local drug concentrations while minimizing systemic toxicity have opened up new possibilities for ILD treatment (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e). Still, the economic cost of long-term medication and other medical expenses is high. A systematic review found that, in most high-income countries, nintedanib is more cost-effective than pirfenidone and can reduce disease progression, improve lung function, and manage symptoms. However, further research is needed in low- and middle-income countries, with comparisons of different healthcare systems and willingness-to-pay thresholds. Our findings suggest that policymakers should explore strategies to reduce drug costs and improve access in resource-limited regions (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). For some types of ILD, lung transplantation is considered the best treatment. However, there is no unified view on the prognosis of patients with ILD after lung transplantations. Some believe that the survival rates of AE-ILD patients who receive lung transplantations are significantly reduced(\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). Others argue that the therapeutic outcomes of lung transplantation for AE-ILD patients are comparable to those for stable ILD patients. The prognosis following lung transplantation among different ILD subtypes needs to be further explored(\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). Medical institutions should continue to develop non-drug treatment methods that facilitate individualized treatment plans for different ILD patients.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec22\" class=\"Section2\"\u003e\u003ch2\u003e4.4 Promoting emotion management\u003c/h2\u003e\u003cp\u003eThe emotion-focused stage is an essential aspect of the development of IPs among ILD patients. After experiencing multiple uncontrollable disease exacerbations, patients develop learned helplessness, and \u0026ldquo;powerlessness\u0026rdquo; was frequently mentioned in our interviews. This can lower motivation and increase the risk of depression(\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). A study has found that 60.3% and 57.1% of ILD patients have symptoms of anxiety and depression, respectively (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). Patients become passive and may even consider giving up treatment. In such cases, a strong social support system is particularly important. It has been found that social support can alleviate learned helplessness in lung cancer patients. However, the relationship between social support and learned helplessness is mediated by individual levels of psychological resilience and self-efficacy. Healthcare providers should aim to offer adequate social support to ILD patients and adopt strategies tailored to individual levels of psychological resilience and self-efficacy (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e). ILD patients also need to feel supported and loved, and to have a sense of connection or belonging. This can affect their happiness and sustain positive behavioral change. Joanna (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e) suggests that peer support can enhance patients\u0026rsquo; confidence in their ability to manage their pulmonary fibrosis. Medical institutions should aim to establish patient support groups that offer psychological support and disease management advice. We found that ILD patients who have experienced multiple acute exacerbations suffer anticipatory grief. According to the 2023 European Respiratory Society Clinical Practice Guidelines(\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e), the unpredictable course of chronic respiratory diseases and the current focus on urgent needs have led to delays in the provision of palliative care for ILD patients. In clinical practice, patient-reported outcomes (PROs) can help doctors to better understand the health status and care priorities of patients. Healthcare providers should establish palliative care teams tailored to national conditions as soon as possible, using PROs to inform the provision of physical, psychological, and emotional support that meets the needs of patients.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec23\" class=\"Section2\"\u003e\u003ch2\u003e4.5 Clinical implications\u003c/h2\u003e\u003cp\u003eImplementing public health education programs to help patients recognize symptoms as early as possible, continuing to research treatment methods, and providing appropriate social support in accordance with China\u0026rsquo;s localized national conditions may help improve the IPs of patients with ILD, thereby influencing rehabilitation outcomes.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec24\" class=\"Section2\"\u003e\u003ch2\u003e4.6 Study limitations\u003c/h2\u003e\u003cp\u003eThis study did not look into differences in the IPs of patients with different types of ILD. It was also limited by the inclusion of patients from a single region of China, which may prevent the generalization of the results to other regions with different socioeconomic conditions. Future research should explore and compare the IPs of patients with different types of ILDs and from different regions.\u003c/p\u003e\u003c/div\u003e"},{"header":"5. Conclusions","content":"\u003cp\u003eWe hope that the findings of this study will contribute to the understanding among medical personnel of the development and connotations of IP in patients with ILD, and provide a theoretical basis for the implementation of relevant interventions.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eILD\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eInterstitial lung disease\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eDALYs\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eDisability-adjusted life years\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eSDI\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eSocial deprivation indices\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eIPs\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eIllness perceptions\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eAE\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eAcute exacerbation\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003ePF\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003ePulmonary fibrosis\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eTRT\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eTreatment\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eCSM\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eCommon sense model\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003ePROs\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003ePatient-reported outcomes\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003cp\u003e The study was approved by the Human Research Ethics Committee of the Affiliated Hospital of Xuzhou Medical University (approval no. 2023-KL254-01). All participants provided written informed consent before participating in the study.\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003cp\u003eNot applicable\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\u003c/p\u003e\u003ch2\u003eFunding\u003c/h2\u003e\u003cp\u003eThis study was funded by the Xuzhou Science and Technology Bureau (KC2245) and the Jiangsu Commission of Health (H2023005).\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eXJ and BC contributed to the study conception and design and provided supervision. Patient recruitment, material preparation, and data collection were performed by JX and QL. Data analysis and interpretation of results were performed by JX and FR. The first draft of the manuscript was written by JX. All authors reviewed previous versions of the manuscript. All authors have read and approved the final manuscript.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eAuthors would like to thank all the staff of the Department of Respiratory and Critical Care Medicine of the Affiliated Hospital of Xuzhou Medical University for their help in this study. Authors also like to express gratitude to funding programs for supporting this study.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eDue to ethical considerations, the raw data are not publicly available. However, anonymized data can be obtained from the corresponding author upon reasonable request.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eMarlies W, Atsushi S, Toby MM. Interstitial lung diseases. Lancet. 2022;400:769\u0026ndash;86.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eZeng Q, Jiang D. Global trends of interstitial lung diseases from 1990 to 2019: an age-period-cohort study based on the Global Burden of Disease study 2019, and projections until 2030. Front Med. 2023;10:1141372.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eLassenius MI, Toppila I, P\u0026ouml;ntynen N, Kasslin L, Kaunisto J, Kilpel\u0026auml;inen M, et al. Forced Vital Capacity (FVC) decline, mortality and healthcare resource utilization in idiopathic pulmonary fibrosis. Eur Clin Respir J. 2020;7:1702618.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eKreuter M, Polke M, Walsh SLF, Krisam J, Collard HR, Chaudhuri N, et al. Acute exacerbation of idiopathic pulmonary fibrosis: international survey and call for harmonisation. Eur Respir J. 2020;55:1901760.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eKeith JP, John W. Why illness perceptions matter. Clin Med. 2007;6:536\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDaphne LJ, Monique JWMH, Mieke R, Peter S, Diana CG, Friedo WD, et al. Illness perceptions and treatment perceptions of patients with chronic kidney disease: different phases, different perceptions? Br J Health Psychol. 2012;18:244\u0026ndash;62.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDarsin Singh SK, Ahmedy FB, Noor ABYA, Abdullah KL, Abidin IZ, Suhaimi AB. Changes in perception of illness during cardiac rehabilitation programme among patients with acute coronary syndrome: a longitudinal study. Healthcare. 2023;11:311.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eTravis DW, Eleshia JM, Kami JM, Farrukh TA, Jeffrey AJ, Jennifer AW, et al. Illness perceptions in chronic lymphocytic leukemia: testing leventhal's self-regulatory model. Ann Behav Med. 2018;53:839\u0026ndash;48.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eJeffrey JS, Kevin KB, Rayid A, Ketan B, Daniel FD, Dirk K, et al. Patients' perceptions and patient-reported outcomes in progressive-fibrosing interstitial lung diseases. Eur Respir Rev. 2018;27:180075.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eLiu Q, Qin T, Hu B, Zhao Y, Zhu X. Relationship between illness perception, fear of progression and quality of life in interstitial lung disease patients: a cross-sectional study. J Clin Nurs. 2021;30:3493\u0026ndash;505.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eBradley B, Branley HM, Egan JJ, Greaves MS, Hansell DM, Harrison NK, et al. Interstitial lung disease guideline: the British Thoracic Society in collaboration with the Thoracic Society of Australia and New Zealand and the Irish Thoracic Society. Thorax. 2008;63:v1\u0026ndash;58.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eChinese Thoracic Society, Chinese Medical Association. Chinese Association of Chest Physician, Chinese Medical Doctor Association. Chinese expert consensus on multidisciplinary discussion of interstitial lung disease. Chin J Tuberc Respir Dis. 2023;46:1176\u0026ndash;88.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDempster M, Howell D, McCorry N. Illness perceptions and coping in physical health conditions: a meta-analysis. J Psychosom Res. 2015;79:506\u0026ndash;13.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eSwigris JJ, Pryor JB, Aronson KI, Guess TA, Solomon JJ. Using bookmarking to reveal dyspnea severity categorizations according to patients with ILD and the physicians who treat them. Ann Am Thorac Soc. 2025;22:1147\u0026ndash;54.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDing F, Wang Z, Wang J, Ma Y, Jin J. Serum S1P level in interstitial lung disease (ILD) is a potential biomarker reflecting the severity of pulmonary function. BMC Pulm Med. 2024;24:266.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eSteve Freitas Dos S, Alda M, Patr\u0026iacute;cia R, Dina B, Adam B, Ana O. Effects of self-management interventions in people with interstitial lung disease. Respir Care. 2023;69:114\u0026ndash;27.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eMalik AA, Rebecca S, John C, Jonathan D, Anna D, Ana Jorge DP, et al. Supporting self-management for patients with interstitial lung diseases: utility and acceptability of digital devices. PLOS Digit Health. 2024;3:e0000318.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eRespiratory Council of Chinese Research Hospital Association. Expert consensus on the management of interstitial lung disease during the COVID-19 epidemic. Chin J Tuberc Respir Dis. 2023;46:1204\u0026ndash;18.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eD'Agnano V, Perrotta F, Fomez R, Carrozzo VM, Schiattarella A, Sanduzzi Zamparelli S, et al. Pharmacological treatment of interstitial lung diseases: a novel landscape for inhaled agents. Pharmaceutics. 2024;16:1391.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eAziz R, Mohammad V-S, Aghdas S, Sajad M, Tayebe R, Abdollah S, et al. Cost-effectiveness of nintedanib versus pirfenidone in the treatment of idiopathic pulmonary fibrosis: a systematic review. Expert Rev Pharmacoecon Outcomes Res. 2025;25:661\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eYaniv D, Anika V, William BS, Huaqing Z, Chandra D, Yoshiya T, et al. Effect of acute exacerbation of idiopathic pulmonary fibrosis on lung transplantation outcome. Chest. 2018;154:818\u0026ndash;26.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eLei Y, Zhiyi X, Min D, Qiufeng Z, Ying Z. Prognosis of lung transplantation in patients with acute exacerbations of interstitial lung disease: a meta-analysis based on cohort studies. Ann Thorac Cardiovasc Surg. 2024;30:24\u0026ndash;00086.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eKlaus RS. Learned helplessness revisited: biased evaluation of goals and action potential are major risk factors for emotional disturbance. Cogn Emot. 2022;36:1021\u0026ndash;6.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eAna Cl\u0026aacute;udia C, Marli Maria K, Marcelo Basso G, S\u0026eacute;rgio Saldanha Menna B. Predictors of physical and mental health-related quality of life in patients with interstitial lung disease: a multifactorial analysis. J Bras Pneumol. 2010;36:562\u0026ndash;70.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eJingui H, Yumei S, Yuemei C, Ling T, Zhaoli Z. How social support influences learned helplessness in lung cancer patients: the chain mediation role of individual resilience and self-efficacy. Front Psychol. 2024;15:1436495.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eJoanna YTL, Gabriella T, Leona D, Arwel WJ, Mariana H, Christie RM, et al. Self-management interventions for people with pulmonary fibrosis: a scoping review. Eur Respir Rev. 2023;32:230092.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDaisy JAJ, Sabrina B, Michele Hilton B, Courtney C, David CC, Albert D, et al. European Respiratory Society clinical practice guideline: palliative care for people with COPD or interstitial lung disease. Eur Respir J. 2023;62:2202014.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Grounded theory, Illness perception, Interstitial lung disease, Common Sense Model","lastPublishedDoi":"10.21203/rs.3.rs-7173257/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7173257/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e\u003cp\u003eTo explore the illness perceptions of patients with interstitial lung disease and their development over the course of the disease.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eThis study recruited 20 patients with interstitial lung disease between October 2023 and January 2024 using purposive, convenience, and theoretical sampling. The collected data were analyzed using initial, focused, and theoretical coding.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eThrough grounded theory analysis of 20 in-depth interviews on illness perceptions in patients with interstitial lung disease, we developed the \u0026lsquo;Perceived Loss of Control\u0026rsquo; framework, which highlights the negativity of illness perceptions in these patients and reveals multiple challenges that patients perceive during the progression of interstitial lung disease\u0026mdash;challenges that are beyond their control and management. By emphasizing controllability, the application of the existing Common Sense Model in the field of ILD interventions has been expanded.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e\u003cp\u003ePolicy makers, medical institutions, communities, and other stakeholders should jointly participate in localized interventions targeting illness perceptions among patients with interstitial lung disease in China. By enhancing patients' sense of control, their illness perceptions may be improved.\u003c/p\u003e","manuscriptTitle":"Perceived loss of control: Grounded theory analysis of illness perceptions among patients with interstitial lung disease","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-09-11 19:08:28","doi":"10.21203/rs.3.rs-7173257/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"db7575df-cc4f-4655-9a68-95f998a4d55e","owner":[],"postedDate":"September 11th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-04-29T08:40:29+00:00","versionOfRecord":[],"versionCreatedAt":"2025-09-11 19:08:28","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7173257","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7173257","identity":"rs-7173257","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}