Disease perception and coping in patients with dry eye disease : a qualitative study

doi:10.21203/rs.3.rs-3748621/v1

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Research Article

Disease perception and coping in patients with dry eye disease : a qualitative study

https://doi.org/10.21203/rs.3.rs-3748621/v1

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Objective

Dry eye disease (DED) is a common chronic eye disease characterized by dry eyes, eye fatigue, and eye discomfort. Few studies have been conducted from the subjective perspective of DED patients to understand how they feel and cope with their symptoms during the disease. This study aims to understand how Chinese DED patients understand and cope with their DED symptoms from the perspectives of disease perception and coping.

Methods

We chose the phenomenological approach in qualitative research used face-to-face semi-structured in-depth interviews with DED patients, and used the Colaizzi seven-step analysis method to analyze the interview data and refine the themes.

Results

A total of 19 patients with DED were interviewed and three main themes were identified, which were 1. perceived health threat; 2. emotional experience of illness; 3. coping with illness.

Conclusions

The results of the study showed that DED patients had certain negative emotions and negative avoidance coping during the process of perceived health threats of DED, suggesting that the medical team should provide a full course of medical support, positive psychological counseling, and guidance to improve disease perception, change disease coping styles, and improve self-management of DED patients.

dry eye disease

illness perceptions

coping

qualitative research

Dry eye disease (DED) is one of the most common eye diseases worldwide, and an analysis of global prevalence has shown that the prevalence of DED ranges from 5% to 50% worldwide ^[1]. DED has evolved into a pressing public health issue due to the economic and psychosocial burden it places on affected individuals. Multiple etiologic factors or risk factors have been identified, ranging from aging, surgery, and poor nutrition to occupational settings ^[2]. These factors contribute to symptoms that lead to ocular discomfort, visual impairment, and tear film instability, often accompanied by elevated tear film osmolarity and ocular surface inflammation, ultimately leading to the signs and symptoms of DED ^[3]. As a populous country in the world, new information technology-driven lifestyles and rapid aging have brought serious DED-related public health problems to Chinese society, and many new therapies and medicines have been developed for the treatment of DED; however, in addition to a range of somatic symptoms that need to be treated, the psychological conditions of DED patients are also equally worthy of attention ^[4-7].

Biopsychosocial models of health and illness may help understand the psychological distress associated with DED. Leventhal's self-regulation model is one of the most widely studied models of health and illness. A series of studies related to this model found that high-fear messages were more effective in changing attitudes toward recommended health actions compared to low-fear messages ^[8]. Individuals are active resolvers of perceived realities dealing with health threats as well as emotional responses to threats ^[9], individuals understand threats to their health and determine how to respond to them by developing their cognitive representations of the threat, which are also referred to as illness perceptions, which are the patient's own common-sense beliefs about their illness. Illness perception is a key element in the interaction between psychology and illness and is an individual's integrated perceptual-cognitive model of a health threat that is used to guide the patient's response to illness ^[10]. The way patients perceive their illness and subsequent treatment may influence many aspects of their experience, including side effects (e.g., developing depression or anxiety) and other health outcomes. Therefore, examining disease perceptions may provide useful information for the development of interventions aimed at reducing the occurrence of these symptoms.DED, a common chronic psychosomatic disease in ophthalmology, has a large prevalent population both globally and in China, and doctors and nurses are paying increasing attention to the emotional and mental state of patients with DED^[11].To improve the mental health and ocular symptoms of patients, it is necessary to better understand patients' perceptions of their disease.

Qualitative research has been proposed as an effective way to understand patients' psychological conditions, including illness experiences and feelings, to optimize treatment planning within the framework of "narrative evidence-based medicine," especially for chronic diseases ^[12^，^13]. of these associated factors can help to understand patients' perceptions of illness and can help to customize patient education programs ^[14]. Evidence from several studies suggests that proposing improved targeted interventions after investigating illness perceptions in ill populations may have a positive impact on their clinical outcomes ^[15-18]. The purpose of this study was to explore disease perception among DED patients in China, to understand how Chinese DED patients understand and cope with their DED disease, and to provide clues for changing disease coping styles, developing intervention programs, and improving self-management.

Qualitative design can comprehensively understand participants' life experience and perception ^[19], so this study adopts qualitative research method with phenomenological methodology orientation to understand participants' disease perception and coping more comprehensively. Phenomenological methods were used in this study to explore the participants' true feelings, experience of illness, and coping experience during their illness. Therefore, the qualitative research method of phenomenology is chosen, and the semi-structured in-depth face-to-face interview is adopted. In the process of tracking outpatient doctors, the researchers found that due to the large number of outpatient doctors and the fast pace of doctors, it is often difficult to listen to each patient's feelings and perceptions of the disease. In the process of treatment, it is also difficult to meet the patients' emotional catharsis and psychological needs for the disease. However, semi-structured interview can lead to more topics about participants' personal feelings. At the same time, the discussion topic is limited to our key issues, so this study adopts semi-structured interview as a better way to carry out research. First of all, combined with the literature review, I gained a deeper understanding of the concepts of disease perception and response, conducted a brainstorming within the research team to form a preliminary outline, and conducted a pre-interview, the results of which were not included in the final interview results. According to the situation before the interview, some more professional medical terms were changed into daily terms that patients could easily understand. The number of interview questions was reduced and the interview time was shortened according to the duration control of the pre-interview, and the interview outline was finally determined. (Table 1)

Table 1：Interview outline

Interview outline

1. What are your basic understandings or feelings about DED?

2. How much of a threat is diagnosed DED to your health?

3. What effect does DED have on your mental state?

4. What are the changes in your behavior and living habits after suffering from DED?

5. What measures do you take to deal with the symptoms of eye discomfort?

Study Participants

Study participants in this study were included using purpose sampling through another cross-sectional study of disease perception conducted by the investigator. Of the more than 300 patients with DED in the cross-sectional study, patients >18 years of age who were willing to participate in this interview were selected. These patients were invited through an invitation received by the researcher during their participation in a DED clinic visit, and all patients met the DED diagnosis^[20] and volunteered to participate in this face-to-face semi-structured interview.

Data collection and analysis

Face-to-face interviews were conducted by a graduate ophthalmic nursing student with specialized qualitative research training and mentored by a Doctor of Nursing Practice (DNP) has more than 10 years of experience in eye care（The researchers were all women）.The venue for implementation was a small, quiet reception room adjacent to the hospital's DED clinic, where the interviews were conducted by the researcher on a one-to-one basis with the participants. Before the start of the interview, the researcher fully introduced the session obtained informed consent, and informed the participant that the audio recordings made during the interview were for research purposes and were not to be used for any other purpose. A relaxed and cordial atmosphere was maintained during the interview, and participants' questions were answered and clarified at any time. The researcher recorded all the answers, changes in expression, and other details during the process. At the end of each interview, the researchers used NVIVO software (QST International, Cambridge, MA, USA) to transcrib the recorded conversation word for word, organize it, and call back the participants in time to clarify the correct expression of the participants' answers to controversial and questionable points. All the interview data were analyzed by two researchers using Colaizzi's seven-step analysis method^[21], which consists of the following steps: (1) repeatedly reading the original materials; (2) initially identifying the themes of possibilities based on the frequency of keywords and key sentences in the materials; (3) coding meaningful statements; (4) repeating the generalization of the coding, pooling the coded and meaningful statements to be consolidated categorization and generalization into different themes, theme clusters, or categories; (5) summarization of the distilled themes to provide a detailed and comprehensive description; (6) return of the obtained results to the respondents to seek verification of the authenticity of the content; and (7) supplementation and consolidation of the new information that emerged from the re-verification ^[21]. In this process, the researcher reads the data repeatedly and immerses herself in the data to gain a sense of the data as a whole; labels important ideas and concepts in the data to begin open coding; categorizes similar and related codes to form categories and subcategories; and defines the categories, subcategories, and codes and identifies appropriate examples of excerpts from the data.Each manuscript was returned to the participants for confirmation before it could be analyzed.The entire study ended after the saturation of the interview data and the inability to extract new interview data. After all the interviews, the researcher numbered the general information of the interviewees according to P1 to P19.

Ethical considerations

This study was conducted by the COREQ Qualitative Inventory ReportingStudy^[22](Supplementary Material 1) and written informed consent was obtained from all study participants by the Declaration of Helsinki, and they informed that participation in the study was voluntary. We carefully complied with requirements such as data protection. This study was approved by the Ethics Committee of the Optometry Hospital affiliated to Wenzhou Medical University (Project No. 2022-167-K-132-01).

A total of 19 patients with DED were interviewed between October 2023 and December 2023, including 7 females and 12 males; ages 21–68 years; interviews lasted 30–50 minutes, and the rest of the general information is shown in Table 2. A total of 19 patients with DED were interviewed and three main themes were identified, which were 1. perceived health threat; 2. emotional experience of illness; 3. coping with illness. (Table 3)

Table 2

Sample characteristics
Participator	Age	Gender	Marital status	Education	Duration of DED(year)
1	46	male	married	University or above	3
2	31	female	Single	University or above	1
3	37	male	married	High school	1.5
4	28	female	divorced	High school	2
5	37	male	married	University or above	2.5
6	57	male	married	High school	5
7	30	female	married	University or above	3
8	68	male	married	Middle school	10
9	58	female	married	Middle school	6
10	48	female	married	Middle school	5
11	31	female	married	High school	1
12	33	male	married	University or above	4
13	30	male	Single	High school	2
14	51	male	married	Middle school	3
15	21	male	Single	University or above	2.5
16	30	male	Single	University or above	2
17	44	male	married	High school	3
18	39	female	married	High school	4
19	24	male	Single	University or above	2
P: participator
Theme 1: Perceived Health Threats
Ignoring and tolerating mild symptoms

Most of the patients said that they had experienced mild eye discomfort for a long time before the consultation, but at the early stage when the symptoms had not yet affected the daily functions of the eyes, the patients showed misjudgment of the symptoms in neglecting and tolerating them, and believed that the symptoms could be cured on their own, failing to realize the potential threat to their health.

P1: "My eyes have been uncomfortable for more than a year, usually not uncomfortable, just looking at the cell phone for a long time the eyes feel a little dry, but there is no way to look at the cell phone, there is a bit of discomfort I just put up with it and it passes."

P4: "Eyes occasionally have a dry feeling, I do not know how long it has been ...... a long time, usually very busy, see a doctor have no time, did not pay attention to it."

P8: "At the beginning of the time is not to pay attention to, eye discomfort has been endured, the age of the organs are degraded, there will always be this disease and that pain, used to it."

P13: "I have dry eyes when I look at the computer for a long time, I can rest my eyes after blinking a few times, and I usually don't pay too much attention to my eyes, and I always feel that it will get better after a while."

P18: "My eyes feel a little tired, so I feel that I have overused my eyes and I don't care about it."

Choosing self-medication and care during the period of concomitant symptoms

With the progression of DED disease, patients felt that their eye discomfort worsened and had perceived that the disease had a certain severity, but they did not choose to consult a doctor in time for a variety of reasons, such as the diversification of the channels through which patients obtain information, lack of eye health awareness, underestimation of the severity of eye symptoms and gradual adaptation to the symptoms.

P3: "I can't get a number to come over for an eye appointment on weekends, and it's not good to take time off on weekdays to go for an eye appointment, so I've been putting it off, and I usually just buy some eye drops online."

P4: "My colleague said this is a symptom of DED, he also has it, it's okay, he recommended I buy an artificial tear and that hot compress eye mask, so I bought it and used it."

P11: "Slowly get used to it, then play less on your cell phone, try not to play at night, and go to bed early"

P17: "It's too much trouble to come over to look at my eyes, so I just do it myself. I buy eye drops and put them on my eyes, but the effect is not very good. Sometimes it works, but sometimes it doesn't work if I use it very often."

Seek treatment when discomfort worsens and affects your work and life

Patients may only perceive the need to seek medical attention when symptoms begin to interfere with daily life, work, or social activities. Patients may perceive a further worsening of the threat to their eye health that is affecting their quality of life, forcing them to take action.

P4: "It's already affecting my work, I can't look at the computer with my eyes, it's dry and painful after looking at it for a long time, my eyes are red as if they're inflamed, I must come and see them now"

P5: "Sometimes my eyes are so bad that I feel like I have no energy at all, I can't concentrate on my drawings at all, it's just affecting me too much, so I came here to register and see the doctor."

P9: "I don't want to go out to play or go on a trip because my eyes are so hard to see. I'm better off at home, but it's windy outside and the sun is blinding."

P15: "I can't keep looking at the screen when I'm online at home, I feel especially sore and it affects my learning"

P19: "Often go out wearing sunglasses with eye drops, people think I have some eye problems, image is not good, can not take contact lenses, especially troublesome, come over to see want to look at the eyes well.

Theme 2 The Emotional Experience of Illness

Anxiety in the face of lack of treatment efficacy and fluctuating symptoms

Patient anxiety about treatment efficacy was prevalent in the study, possibly because the effects of treatment for DED disorders may not be apparent initially and take longer. In addition, the fluctuation of symptoms brings about psychological stress for patients.

P2: "I've come to see you many times, I've done all the treatments, my eyes are not getting better, they are still like this, I'm anxious ah, I can't do my work well"

P5: "Why is it that my eyes are still comfortable for a day or two after each treatment, and then a week later they are back to their original state, it's just the same thing over and over again?"

P6: "I've changed many kinds of eye drops, I've tried all the DED eye drops on the market, but they don't work even after a long time, anyway, I'm going to be hopeless soon"

P10: "I've been suffering from this disease for years, and it's almost become my heart disease, so I've come all the way here to see it, hoping that it can be useful."

Helplessness in the face of incurable disease

DED, as a chronic disease of the eye, is similar to other common chronic diseases, and it is difficult to be completely cured by the existing drugs and treatments. The result is not in line with the patient's expectation of treatment, which leads to a certain psychological gap and helplessness.

P8: "Eyes are not good again and again, there is no way"

P12: "I've known for a long time that DED can't be cured, but I've been sick for a long time, so I'll just use the medication first, there's nothing else I can do."

P14: "I'm an old DED patient, I've been to all the famous eye hospitals, but now that I'm getting older, I'm sure I can't see anymore, there's nothing I can do."

P19: "The doctor said that this cannot be cured, what can I do? I am only in my twenties."

Facing the fear of unpredictable disease progression

Facing the uncertainty of DED disease progression and the lack of eye health knowledge, patients showed fear of disease progression, and some of them were worried that they had complications of other eye diseases or even blindness.

P11: "I'm still young and DED is so serious, what will I do when I'm old, will it cause other eye problems"

P13: "When I get up in the morning, my eyes are foggy, I can't open my eyes, I have a lot of eye boogers, I'm really afraid that I'll go blind one day"

P14: "The doctor said I have high intraocular pressure, it's scary, is it related to DED or not, and will it develop into glaucoma in the future?"

Helplessness in the face of onlookers' lack of understanding of their disease

The traditional concepts of medical health and health care have made Chinese society understand and pay less attention to eye diseases, and some of the patients feel helpless because they find it difficult to get the understanding and support of the people around them during the process of the disease.

P3: "Nowadays, we don't pay attention to this (DED) disease, I tell people how my eyes are hard and dry, and they don't understand you because it doesn't look like there's any big problem."

P5: "My family thinks that I often run to the hospital and my eyes are not looking good, there is no need to see, it's just a matter of eye drops, it's not a big disease, that has a big impact on me personally, on my work life"

P15: "My mom said this is not necessary to see at all, is that I think I am staying up late to play with the phone to play, do not play with the phone is good, I do not know how to explain to her"

Theme 3 Coping with Illness

Negative coping and social avoidance

DED patients' self-management ability and their own emotional and psychological state seriously affect patients' disease coping, which, together with incorrect knowledge and concepts of the disease, leads to patients' choice of negative coping in the treatment process of DED, reliance on unhealthy medication habits, and indulgence in negative emotions, which affects their therapeutic effects, psychological health, and normal social life.

P8: "Alas we older people, cell phones also do not know how to use can not keep up with the times, would like to ask the eyes in the end what is going on, how has not been good, the doctor said that chronic diseases can not be cured, I can not figure it out, so dragged"

P13: "I haven't worked for two years, because of this (eye), I can't go to work, and now I'm just staying at home to get better."

P17: "It's just eye drops, it's too troublesome, I just use them when I think of it, anyway, it can't be cured, and I don't want to spend too much time and energy."

P19: "If I can't control it without playing cell phones or staying up late, I rely on eye drops, several times a day, so I won't go blind."

Seeking social support

The main ways in which some people with DED seek social support others supportive listening, support from various sources of scientific information and actively expressing their demands for medical resources.

P2: "I just cry alone, my family is not in harmony, it's gotten to this point, my own life is terrible, I've cried my eyes out, my heart is suffering, it's much better to have someone who can listen to me"

P5: "I took time off work to come here, but I couldn't get a number on the weekend, so it's not good to take time off work, I told the doctor that I hope the hospital will open a few more DED clinics and treatments on the weekends to make it easier for the office workers."

P8: "Now there is a lot of information on the Internet, such as DED, whether it is good to apply hot or cold compresses, blepharoplasty massage in the end to do, I can not figure out, so come to see the doctor I will ask the doctor, she was very patient with me to explain it."

P11: "There are a lot of DED patients sharing on Xiaohongshu, it's good to see that DED patients communicate and discuss with each other, and there are a lot of useful things, and there are also some professional doctors who popularize the eye stuff on it, so I understand more about what's going on."

Adopting self-management strategies

In addition to coming to the hospital for treatment, home health care for DED patients is important in the overall management of the disease. Behaviors of patients adopting self-management strategies include controlling electronic screen use, increasing time spent outdoors, and reflecting on their desire to be proactive in disease management.

P1: "I limit myself to two hours a day on my cell phone and eliminate all unnecessary cell phone play except for responding to work messages"

P4: "Bought supplements to take, a lutein and that what's 3, to give research supplements"

P7: "Doctor prescribed herbal packs for fumigation and eye masks, use them twice a day, right before bedtime, and then insist on coming in for regular follow-ups to check this blepharoplasty and intraocular pressure"

P16: "Do more outdoor activities, go out to play soccer on weekends, hiking, otherwise stay at home and want to watch those electronic products, cigarettes also quit"

Table 3

Themes and subthemes with examples.
Themes	Subthemes	Quotes
Perceived Health Threats	Ignoring and tolerating mild symptoms	P1: My eyes have been uncomfortable for more than a year, usually not uncomfortable, just looking at the cell phone for a long time the eyes feel a little dry, but there is no way to look at the cell phone, there is a bit of discomfort I just put up with it and it passes
	Choosing self-medication and care during the period of concomitant symptoms	P3: I can't get a number to come over for an eye appointment on weekends, and it's not good to take time off on weekdays to go for an eye appointment, so I've been putting it off, and I usually just buy some eye drops online
	Seek treatment when discomfort worsens and affects your work and life	P4: It's already affecting my work, I can't look at the computer with my eyes, it's dry and painful after looking at it for a long time, and my eyes are red as if they're inflamed, I must come and see them now
The Emotional Experience of Illness	Anxiety in the face of lack of treatment efficacy and fluctuating symptoms	P2: I've come to see you many times, I've done all the treatments, my eyes are not getting better, they are still like this, I'm anxious ah, I can't do my work well
	Helplessness in the face of incurable disease	P8: Eyes are not good again and again, there is no way
	Facing the fear of unpredictable disease progression	P11: I'm still young and DED is so serious, what will I do when I'm old, will it cause other eye problems
	Helplessness in the face of onlookers' lack of understanding of their disease	P3: Nowadays, we don't pay attention to this (DED) disease, I tell people how my eyes are hard and dry, and they don't understand you because it doesn't look like there's any big problem
Coping with Illness	Negative coping and social avoidance	P8: Alas we older people, cell phones also do not know how to use can not keep up with the times, would like to ask the eyes in the end what is going on, and how has not been good, the doctor said that chronic diseases can not be cured, I can not figure it out, so dragged
	Seeking social support	P2: I just cry alone, my family is not in harmony, it's gotten to this point, my own life is terrible, I've cried my eyes out, my heart is suffering, and it's much better to have someone who can listen to me
	Adopting self-management strategies	P1: I limit myself to two hours a day on my cell phone and eliminate all unnecessary cell phone play except for responding to work messages

The results of this study show the real feelings and experiences of DED patients during the disease process, and three main themes were analyzed, which are perceived health threats, emotional experience of disease, and disease coping. Healthcare professionals should pay attention to the assessment of DED patients' disease perception and analyze patients' perceived disease experience and coping strategies to make personalized and effective interventions to reduce negative disease perception in DED patients.

Providing full-course medical support during the dynamic process of perceived health threats

During the mild symptomatic phase, patients' neglect and tolerance of early symptoms may stem from a lack of awareness of DED. Studies have found that some patients may fail to recognize the significance of symptoms when they first appear and choose to tolerate them as temporary discomfort. This calls for more generalized health education on the early recognition of DED disorder to increase patients' attention to the symptoms. During the symptomatic concomitant period, patients were more inclined to adopt self-medication and care. This suggests that some patients are somewhat health literate and capable of acquiring health information. Therefore, patient education is particularly important to ensure that patients properly understand and safely self-manage their symptoms, and the healthcare team can support patients' self-management efforts by providing detailed educational materials and regular health education. Patients are more motivated to seek professional treatment when uncomfortable symptoms interfere with work and life. This emphasizes the importance of early treatment. However, the study also found that patients were reluctant to actively seek medical help until their symptoms were severe, which may be related to patients' trivialization of their symptoms. Therefore, healthcare professionals need to enhance health education for patients and emphasize the benefits of early treatment to alleviate their suffering when symptoms worsen.

There are commonalities in the evolution of disease perception in DED patients. Throughout the dynamics of perceived health threats, we observed a continuous process of patient cognitive evolution. Early neglect of symptoms gradually evolves into awareness of self-management, eventually further exacerbating the need for specialized treatment when symptoms become severe. At each stage, the medical team needs to play a different role. Face-to-face interviews, on the other hand, provide a good way to identify the different stages of DED development. At an early stage, systematic health education needs to be provided; During the self-management phase, healthcare professionals should emphasize support and guidance to ensure patients are using medications properly and implementing care measures; Finally, when seeking treatment, the intervention of a professional medical team will become crucial. However, in practice, due to the huge medical pressure in China, medical staff often only play an important role in the last step, lacking early health education and medium-term self-management guidance for DED patients. As the dynamic process progresses, patients' needs and expectations change, and healthcare professionals should pay close attention to these changes to provide personalized support and information to patients.

Actively channeling negative disease perceptions and negative emotions in DED patients

In the study, patients showed anxiety in the face of ineffective treatment and fluctuating symptoms. This may reflect patients' concerns about the uncertainty of disease progression. The healthcare team needs to understand the underlying cause of this anxiety, whether it is due to maladaptive treatment regimens or inadequate communication of information. Nurses, as the primary healthcare plan implementers, medical decision information providers and caregivers, and the leaders of health education and humanistic care, fully understand the psychological experience of patients can promote effective nurse-patient communication, enhance patients' health literacy ^[23], and promote the recovery of patients with DED. In addition, this study found that DED patients have the psychology of fear, worry, and helplessness, and they are afraid that DED will affect their lives and even cause blindness due to the lack of knowledge of the disease and the impact of the disease. In this regard, ophthalmologists should communicate with DED patients to understand their needs for access to information and the content of the information to ensure that the best way to disseminate health education knowledge is developed, and comprehensive health education is provided to them through a combination of online and offline methods to improve their knowledge of the disease to reduce their fear, and at the same time, guide the DED patients to correctly understand the effects of the disease to alleviate their anxiety. Lack of social understanding and support leads to a variety of negative emotions in DED patients, when DED patients think that the disease they suffer from is not understood by others, and they feel helpless and hopeless, which laterally reflects that the popularity of DED as adisease in daily life is lacking, and that the social public recognizes and understands the disease to a low degree, according to the statistics of the "Chinese DED Expert Consensus" ^[20], the incidence rate of DED in China is as high as According to the statistics of "China DED Expert Consensus" ^[20], the incidence rate of DED in China is as high as 21%-30%, with an average of 1 out of every 5 people suffering from DED, and accordingto the calculation of the population ratio, it is expected that there are more than 300 million people in China who are suffering from the hazards of DED, and gradually presentingthe trend of the development of the lower age, but due to the lack of extensive public understanding of DED and cognition, the awareness of DED still stays in the misconception of "minor eye discomfort". However, due to the lack of widespread understanding and awareness of DED among the general public, the disease is still perceived as "minor eye discomfort". Eye health is an important part of national health and involves the whole life cycle of people of all ages. In the age of video screens, the popularization of eye health requires the continued exploration and efforts of healthcare professionals. Social support has a positive impact on patients' emotional experience and can relieve individual psychological pressure, eliminate individual psychological barriers, and improve individual psychological health. Healthcare professionals can give DED patients a certain degree of emotional support and emotional communication during the diagnosis and treatment process, better deal with the emotional needs of patients during the treatment process, and provide therapeutic listening, psychological support, and professional eye health counseling, to improve the patient's bad mood and promote the patient's confidence in self-management.

In addition, traumatic events that negatively affect individuals may also lead to positive experiences. Positive changes that occur after an individual experiences a traumatic event are referred to as posttraumatic growth ^[24]. In a qualitative study of the disease experience of adolescent SLE patients ^[25], it was found that patients experienced growth in coping with the disease, which was manifested in the areas of increased personal strength, knowing how to sympathize with their parents, and learning to pay attention to their health, although a related study ^[26] showed that patients with chronic diseases did not experience a high level of post-traumatic growth. However, ophthalmology healthcare professionals still need to realize the possibility of DED patients' growth in the course of their illnesses and provide them with positive guidance to create favorable conditions for them to fully explore their advantageous potential.

Recognizing the coping styles of DED patients and guiding them to positively and correctly cope with the disease

Coping styles refer to the cognitive and behavioral approaches that individuals adopt when facing frustration and stress ^[27]. The results of this study show that in the face of disease and its effects, DED patients may adopt two kinds of coping styles, negative coping, and positive coping, which is similar to some domestic and international studies related to disease coping ^[28]. Negative coping is mainly characterized by avoidance and social isolation, while positive coping is mainly characterized by seeking social support and adopting self-management strategies. Healthcare professionals patiently and carefully recognize patients' illness coping styles through positive communication and conversation with patients in the course of treatment. Social avoidance refers to the individual's conscious tendency to avoid social interactions, and social avoidance is a manifestation of social anxiety ^[29]. During the interview process, some patients revealed negative treatment attitudes and a certain degree of social avoidance. Negative coping with illness in patients with chronic diseases can aggravate their anxiety and depression ^[23], and social avoidance can lead to negative psychological problems such as social withdrawal, self-isolation, low self-esteem, depression, and so on, which can affect the physical and mental health of patients and lead to a decline in the quality of life of the patients, decrease the adherence to the treatment and hurt the outcome of the treatment. The outcome of the treatment will be adversely affected. However, some studies have suggested that the more positive the coping, the better the outcome, a coping strategy is not always effective, coping is context-specific and the coping effect changes dynamically, excessive confrontation with the disease can cause anxiety, leading to excessive attention to the disease and its side effects, resulting in patients with symptomatic embarrassment ^[30–32], and appropriate avoidance of certain patients may be better for them. Therefore, ophthalmologists should carry out a reasonable assessment and appropriate interventions for patients with DED, such as self-expression interventions, i.e., patients express their inner feelings and thoughts through verbal and written forms, to improve the patient's psychological resilience and to promote their positive coping with the disease, and the higher the level of psychological resilience of the patients, the more conducive they are to coping with the disease with a positive attitude ^[33]. It has been proved that improving patients' symptom perception and coping ability can reduce the adverse consequences of uncomfortable symptoms and improve their negative emotions. In addition to active treatment, caregivers can provide patients with symptom management knowledge through diversified platforms and various forms of education, such as health education brochures, WeChat tweets, or short videos, to improve patients' ability to perceive disease; at the same time, behavioral psychotherapy such as cognitive-behavioral interventions, relaxation therapy, and empowerment education can also improve patients' perception of the disease, provide more social support, and help develop the knowledge, skills, attitudes, and self-consciousness of patients. knowledge, skills, attitudes, and self-awareness to promote behavioral change ^[34–36].

During the interviews, it was found that some patients had already initially acquired the awareness and ability of self-management, and the positive coping attitude and the level of self-management ability promoted each other. They have access to health information through a variety of channels, such as the Internet, newspapers, and other multimedia publicity knowledge, screen time planning, nutrient intake, adequate outdoor activities and traditional Chinese medicine physiotherapy to carry out home self-care, in this process, health care professionals should give some encouragement and guidance to help them develop individually tailored self-management programs and make the patient's self-management strategy more scientific and rational, and can make the patient's self-management strategies more Scientific and reasonable, and can establish a network of patients group punch card activities or organize offline patient communication activities to monitor and ensure the effective implementation of self-management programs. Finally, healthcare professionals should also help patients to identify health information of different quality, including patiently answering patients' questions, providing a more scientific and standardized health information popularization platform, and other measures.

Strengths and limitations

To the best of the researcher's knowledge, this study is the first to focus on disease perception and disease coping in patients with DED. The strengths of this study are 1. the use of qualitative research methods, semi-structured interviews with DED patients, in-depth and extensive first-hand information on the subjective feelings and personal emotions of DED patients. 2. in the process of interviewing the patients, the patient's personal views on the perception of the disease and gave more targeted medical advice. However, there are still some limitations in this study, firstly, the researcher, as a medical professional, in the process of talking to patients who do not have professional medical knowledge, patients may be influenced and may have some bias in the interpretation of the study results.2. Only 19 patients were selected for this study, all of whom were Chinese, and constituted a sample of an urban community from a similar area, which is not representative of all DED patients, and there are limitations to the generalizability of the study results.

This study describes the importance of fully understanding patients' feelings about their illness to identify adverse psychological conditions and help them better cope with their illness during the dynamic development of DED, which contributes to and informs the inclusion of DED in chronic disease management. Future research should build on this study and combine it with the investigators' ongoing cross-sectional survey of disease perception in DED patients to explore intervention programs and health education strategies for disease perception that are appropriate for DED patients.

Acknowledgements

We would like to thank KYZ for her help and guidance in this work

Authors’ contributions:

Yuanyuan Shen Study design, data analysis, interpretation of the results and manuscript drafting, writing–original draft, conceptualization, methodology, writing–review & editing, Visualization。Ziling Song:Participated in the interview and data analysis,Visualization.XinYao:Participated in the interview and data analysis. Xiaoqiong Huang：Study design, Writing review & editing, Visualization, Project administration.

Funding:

None declared.

Data Availability

The datasets produced during the current study are available from the corresponding author upon reasonable request.

Ethics approval and consent to participate

This study was approved by the Ethics Committee of the Optometry Hospital affiliated to Wenzhou Medical University (Project No. 2022-167-K-132-01). Permission to conduct this study was granted by the regulatory body of the study setting. The study was consistent with the principles outlined in the Declaration of Helsinki. All patients were informed of the purpose of this study and any details of their responses were kept confidential. Informed consent was obtained from all individual participants included in the study, and all registered patients signed a written informed consent form.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests.

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Disease perception and coping in patients with dry eye disease : a qualitative study

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