Introduction

1. Background

In Korea, the number of glaucoma patients has been increasing at an average annual increase rate of 4.5% from 870,000 people in 2017 to 1.08 million people in 2021 [1]. Glaucoma is one of the three leading causes of blindness worldwide. In early stages, there are usually no symptoms since the optic nerve damage occurs gradually, but as the disease progresses, in later stages, severe visual field loss occurs and it may even cause complete vision loss. In particular, since optic nerve damage caused by glaucoma does not improve even with treatment, glaucoma does not currently have a cure [2].

The main goals of glaucoma treatment are to detect the disease early through regular eye exams, prevent the progression of optic nerve damage and visual field defect, and improve quality of life in patients [3]. Chronic progressive diseases such as glaucoma require patients’ self-management and a continuous and comprehensive medical intervention [4].

Glaucoma patients have been shown to have high levels of depression and anxiety and a low level of quality of life [5,6]. In addition, they experience great mental and psychological difficulties due to visual field defects and visual impairment during the treatment process, so nursing care for glaucoma patients requires not only approaches for management of physical symptoms but also psychological understanding and support [7].

Therefore, nursing care based on the needs of glaucoma patients should be provided to help them adjust to the disease and increase therapy adherence rates. The provision of nursing care based on the needs of patients can help reduce irreversible damage caused by glaucoma by positively improving patients’ treatment adherence. In this regard, it is believed that qualitative research to understand and reveal phenomena experienced by patients can provide practical help for nursing based on the needs of patients. In other words, a better understanding of the experience of patients can be provided by qualitative research rather than objective quantitative research carried out by selecting some interesting concepts from researchers’ perspective and identifying associated variables or influencing factors.

A review of previous studies on glaucoma patients showed that previous quantitative researches were mainly conducted centered on ophthalmological societies, and the majority of them were focused on physical problems such as risk factors for glaucoma [8] and treatment methods [9,10].

With respect to qualitative research on glaucoma patients, there are a small number of qualitative studies on glaucoma patients conducted in foreign countries, and these prior studies include studies limited to glaucoma treatment experiences, such as a research on barriers to glaucoma medication adherence [11] and an investigation of patients’ experience of a glaucoma virtual clinic [12], and a study of quality of life in children with glaucoma [13]. In the case of domestic qualitative studies on glaucoma patients, a study in the field of special education investigated the experience of the visual environment and support needs among four glaucoma patients with visual impairment in their 40s [14], and a phenomenological study explored the illness experience of patients with visual field defects in their 20s and 40s [7]. As described above, a review of domestic and foreign previous studies revealed that there have been few qualitative researches on the illness experience of glaucoma patients in their 50s or older.

However, there is a clear need to qualitatively explore the illness experience of glaucoma patients in their 50s or older, considering that 76.4% of glaucoma patients in Korea in 2021 are in their 50s or older [1], Also, according to a survey by Statistics Korea, people aged 50 or older account for 44.16% of the total population [15], and these age groups often suffer from various chronic diseases and physical dysfunction, and experience various difficulties due to such health problems [16]. In particular, considering that glaucoma is a chronic progressive disease that most commonly occur in people aged 50 or older, there is a need for qualitative research to understand and reveal the experiences of glaucoma patients in their 50s or older.

Phenomenological research is an approach of qualitative research that describes an individual’s lived experiences, and allows the researcher to take a holistic approach of contacting the reality of the subject and thereby explain the essential nature of human behaviors based on the understanding of human beings [17]. Among phenomenological research methods, the method proposed by Colaizzi [18] focuses on deriving the common attributes of all research participants and is appropriate for describing the essential structure of the illness experience of glaucoma patients. Therefore, this study attempted to conduct an in-depth analysis of the experiences of glaucoma patients aged 50 or older and gain a deeper understanding of their illness experience by applying the phenomenological research method of Colaizzi [18]. Based on the research results, this study sought to provide nursing knowledge for glaucoma patients and provide basic data for nursing interventions and the development of intervention programs.

2. Purpose

The purpose of this study was to conduct a comprehensive, in-depth inquiry of the illness experience of glaucoma patients and describe its meanings by applying a phenomenological method. The main research question of this study is as follows: ‘What is the essential nature of the illness experience of glaucoma patients?’

Methods

1. Study design

This study was an inductive research conducted according to the phenomenological procedures of Colaizzi [18] to comprehensively understand and explore the disease experience of glaucoma patients through in-depth interviews.

2. Participant selection

The participants of this study were patients aged 50 or older who were diagnosed with glaucoma (diagnosis code: H40, H42) at the outpatient clinic of the Department of Ophthalmology at a university hospital in Busan, and participants were selected without restrictions on the duration of disease or whether the patient underwent surgery for glaucoma. Glaucoma is a chronic progressive disease that does not have a cure, and glaucoma surgery is performed with the goal of slowing down the progression of the disease. Therefore, it was thought that it would be difficult to comprehensively understand the overall characteristics of the disease if participants were limited by applying the inclusion criteria about disease duration and previous history of glaucoma surgery, so the criteria for selecting subjects were determined through agreement among researchers. To ensure the homogeneity of participants, participants were selected among patients without cognitive impairment and with visual field defects diagnosed through visual field testing, and patients with other ophthalmological diseases that may affect visual field defects were excluded. Study participants were selected by the purposive sampling method. This researcher gave detailed explanations about the purpose and methods of this study to the fellow doctors in the department of ophthalmology and outpatient nurses of the hospital to form a trust relationship with them. The hospital staff recommended participants who experienced the disease and had no difficulty communicating among patients who were diagnosed with glaucoma and had visual field defects. Among the patients recommended by the medical staff, ten patients who met the inclusion criteria and gave informed consent to participate in the study were finally recruited as the participants of this study.

3. Data collection

Data collection was conducted from March to April 2023, and face-to-face individual interviews with the participants were conducted by the researcher. Individual interviews were conducted 1 to 2 times for each participant, and each interview session took 1 to 2 hours. Considering the accessibility and convenience of the participants, interviews were conducted in a quiet place such as a consultation room in a hospital, the participant’s home, or a café. After collecting and analyzing data from eight people, the researcher recognized that the collected data included repeated contents. As a result of conducting interviews with two additional participants, it was determined that data saturation was reached because no additional new facts were found and the same information was repeatedly found. Therefore, data collection was completed.

During the interview, the researcher first asked about the participant’s general characteristics, and the main interview was started with the following unstructured and open-ended question: “Please tell me about your illness experience about being diagnosed with glaucoma.” Regarding the parts that the researcher considered important among the participant’s statements, follow-up questions were asked to conduct an in-depth inquiry of them. The main interview questions were as follows: 1) How did you feel when you were diagnosed with glaucoma?; 2) What did you experience due to the symptoms of glaucoma?; 3) What difficulties do you have due to glaucoma?; 4) While you were experiencing the illness process after glaucoma diagnosis, what impact did the illness process have on you?; 5) What has changed in your life as a result of your illness experience? Throughout the entire process of an interview from the beginning to the end of the interview, the researcher excluded the researcher’s subjective viewpoint or prejudice through ‘suspending judgment.’ In addition, the researcher made continuous efforts to understand the essential nature of the participants' experiences through open-ended questions.

In order to describe the phenomena experienced by the study participants as they are, the purpose and procedures of the study were fully explained to the participants, and after their consent was obtained, the interviews with them were recorded. After interviews with the participants, the researcher listened to the recordings repeatedly and made verbatim transcripts of them. In addition to the participants’ verbal expressions, their gazes, gestures, laughter, crying, weeping, and changes of facial expression were also observed and recorded in the interview notes. The researcher read the transcripts of interviews repeatedly several times to understand the meanings of what the participants said. When omitted questions or parts with unclear meanings were found in the process of reading the transcripts of interviews, supplementary questions were asked during the next interview. After completing the interviews, the researcher gave her contact information to the participants and informed them that they could make inquiries related to the study at any time.

4. Data analysis

To analyze research data, the researcher directly carried out the coding process and derived results according to the procedures of the phenomenological method presented by Colaizzi [18]. The data analysis process was carried out in the following order. 1) Glaucoma patients’ illness experiences were recorded through individual in-depth interviews and then the recordings of interviews were transcribed. The researcher listened to and read the participants’ statements repeatedly to get feelings about them. 2) Meaningful statements were found and underlined from sentences containing phenomena representing the illness experience of glaucoma patients, and statements with similar meanings and overlapping statements were extracted and systematically described. 3) The statements in the extracted sentences were restated in the researcher’s language to derive meaning units. 4) The derived meaning units were classified based on common themes. 5) Similar themes were grouped together to derive more general and abstract theme clusters. 6) In order to validate the theme clusters, they were checked by comparing them with the raw data. 7) After integrating the analyzed contents into one description, the essential meanings of the research phenomenon were comprehensively described.

5. Ensuring the quality of research and the researcher’s preparations

This study attempted to ensure the rigor of qualitative research, based on the following four criteria for rigor in qualitative research suggested by Guba and Lincoln [19]: credibility, transferability, dependability, and confirmability. First, to ensure credibility, the interviews with the participants were recorded after obtaining the consent of each participant to prevent the omission of any part of the interview data. The researcher refrained from expressing her emotions during each interview to minimize the researcher’s influence on the participant, and the transcription of recordings was conducted immediately after each interview to minimize the distortion and omission of data. In addition, in the data analysis process, to ensure consistency in data analysis and increase the credibility of analysis results, the researcher derived analysis results based on consensus through discussion with two other researchers with abundant experience in qualitative research. Second, to ensure transferability, study participants in various environments were selected by the purposive sampling method, and data were collected until saturation was reached. Third, to increase dependability, the researchers faithfully applied the analysis procedures presented by Colaizzi [18], and asked one participant to verify whether the content of the transcript and analysis results were consistent with what he or she had stated. In addition, the researchers made a detailed description of the research method and the processes of data collection and analysis in detail, and tried to describe the participants’ vivid experiences by quoting their statements in the research results. Lastly, confirmability can be ensured when the above-mentioned three criteria have been secured. Throughout the entire research process, efforts were made to exclude the researcher’s viewpoint or preconceptions by suspending judgment in order to minimize the distortion of the research phenomenon. The pre-understandings and assumptions recognized by the researcher are as follows. Patients with glaucoma may not be aware of the seriousness of the illness and are likely to think it is not a serious disease. Since it is not a life-threatening disease, they would not worry much about it, although it is an unfamiliar disease. When they begin to recognize the illness that gradually gets worse with time, and their anxiety and despair will increase. Because the researcher presumed that elderly patients with glaucoma would complain of not only physical symptoms but also mental problems such as higher levels of anxiety and depression, the researcher became curious about their perceptions and experiences of the disease.

The researcher completed two courses (6 credits) on qualitative research as part of a doctoral program to have a theoretical foundation for qualitative research. In addition, the researcher regularly participated in qualitative research seminars and workshops to get opportunities for training in data collection and analysis as a qualitative researcher.

The final research results were reviewed by two persons with a PhD in nursing and an MD-PhD.

6. Ethical considerations

The data for this study was collected after receiving approval from the IRB of Kosin University (IRB No. KU IRB 2022-0077). Participants were given explanations about the purpose and methods of the study before data collection, and were informed about their right to withdraw from this study at any time. They were also informed that the interview data would be anonymous, confidentiality would be guaranteed, and the interview data would be discarded after the completion of the study. The participants of this study fully understood these facts and signed a written consent form. The collected data were coded to ensure anonymity, written or printed data were stored in a locked filing cabinet, and electronic data files were stored on the researcher’s personal computer locked with a password. The participants were given a small gift certificate as a token of gratitude after interviews were completed.

Results

The participants consisted of three women and seven men. The average age of the participants was 68 years, and the participants included two people in their 50s, five people in their 60s, one person in their 70s, and two people in their 80s. Regarding their occupations, the participants consisted of two unemployed people, two housewives, a bus driver, a person engaged in construction equipment business, a person engaged in financial business, a person engaged in the fishing industry, a person engaged in agriculture, and a business representative. The duration of disease ranged from 2 weeks to 35 years. Regarding the eyes diagnosed with glaucoma, six people were diagnosed with glaucoma in both eyes, two people in the right eye, and two people in the left eye. The transcript data obtained from 10 participants were 107 pages of A4 paper, and a total of 39 meaning units were extracted from the data. Based on the results, while rechecking the relatedness of derived meaning units to the raw data, the meaning units were classified and grouped together into 16 themes, and common themes were grouped together again to derive six theme clusters (Table 1).

1. The frightening disease unexpectedly discovered

This theme cluster depicts participants’ feelings and perceptions when they were first diagnosed with glaucoma. Most of the participants were unexpectedly diagnosed with glaucoma as the disease was discovered by chance while receiving treatment for other diseases, and when they were first diagnosed, they were surprised by the expected diagnosis, but they supposed it was an easily curable disease. However, after they learned that glaucoma, unlike other diseases, needs different treatment methods and is a progressive disease that cannot be completely cured, they were living every day with anxiety and the feeling of helplessness.

Actually, when I didn’t know about glaucoma, I didn’t think much of it. When I were healthy, anyway, at that time, I didn’t even recognize that the risk of blindness from glaucoma is high. Now, I feel afraid to learn that glaucoma, macular degeneration, and retinopathy are three major diseases causing blindness. (Participant 2).

1) Stunned by the unexpected diagnosis

Most of the participants were unexpectedly diagnosed with glaucoma while receiving treatment for another disease. As in most cases of glaucoma, which typically does not show obvious symptoms in early stages, most of the participants didn’t feel any particular symptoms of glaucoma at the time of diagnosis, and the disease was discovered by chance at a hospital. Because the participants did not know the accurate meaning of glaucoma and the seriousness of the disease, glaucoma was a strange unfamiliar disease to them, and they felt bewildered and confused when they were unexpectedly diagnosed with this disease.

2) Feeling overwhelmed about the future

Unlike common diseases, glaucoma is a progressive disease that cannot be cured or improved by surgery or treatment. The participants gradually realized that it is a disease that cannot be cured by modern medicine, and they continued treatment by applying eye drops every day to prevent the disease from getting worse. However, they felt at a loss and helpless to learn that there is no specific medical treatment that can cure the disease. Because the symptoms of glaucoma alternately get better and worse and this disease cannot be cured, the participants were living every day with anxiety and would do so during the remaining years of their life.

2. A dismal life gradually trapped in darkness

This theme cluster represents the participants’ experience of physical pain and difficulties in daily life due to the various symptoms caused by glaucoma. Due to the symptom of blurry and dim vision, they had difficulty performing daily activities at home they had done easily before, so they felt frustrated. The range of their activities was further reduced due to a gradual narrowing of their visual field and their fear of dark places. In addition, the participants were experiencing many inconveniences due to poor eyesight in various areas of their lives, including working life and daily tasks at home, and were also facing restrictions on various activities that glaucoma brought.

If I had good eyesight and saw things clearly, I would have done various things, but since two years ago, I haven’t even been able to prepare meals and don’t cook anymore …. I can see the shapes of things, but I can’t even see the people on TV … They look blurry and I cannot know what they are doing. I can hear sounds, but I can’t see their faces. It’s really frustrating because I can only see the blurry shapes of people. (Participant 6)

1) Eyes filled with welling tears and pain

All the participants complained of blurry and dim vision. More specifically, they experienced symptoms such as feeling like looking at blurry clouds or something like the moon floating in front of eyes, cloudy vision like looking at things through fog or haze, and lights appearing like a rainbow or looking blurry. These symptoms sometimes caused letters to look blurry, and caused objects to appear or disappear, or caused things to appear larger and then smaller repeatedly. Some participants complained of severe eye pain. Meanwhile, some participants said that they experienced discomfort because they shed more tears than usual after being diagnosed with glaucoma.

2) Feeling discomfort and frustration from disrupted daily life

The participants experienced many changes in their daily lives due to the discomfort caused by various eye symptoms. For example, they felt frustrated when they had difficulty doing daily activities at home that they had done very easily, such as cutting nails, putting on and taking off shoes, eating, or watching television, due to their poor eyesight.

3) Sorrowful for the loss of identity

The participants said that they could continue to work if their eyes got better, but their damaged eyesight made it difficult for them to work or do any activities. In particular, the participants in the younger age group felt devastated about their uncertain future as they experienced many limitations on various activities due to their poor eyesight. Among the participants, a woman who had performed housekeeping duties as a housewife felt sorry and guilty for not being able to fulfill her roles at home.

3. Fear of the unseen

This theme cluster reveals the participants’ psychological pain due to the characteristics of glaucoma, which did not improve despite continuous treatment and disease management even in a difficult situation. They were living with fear and anxiety about the possibility of complete vision loss every day, and they felt so anxious that they thought that if they became blind in the end, they would feel despair as if their life was over, and that even though it is not a fatal disease, it would be better to die.

(If I go blind), it’s like my life is completely over. Even though I am not young, I am still active, exercise a lot and try to live an active life like I did when I was young. If that happens, my life will be completely over. I will just breathe and live and won’t be able to do any activities … My life will probably be shortened, and that is very psychologically … My biggest worry is that I might go blind. … If you lose your health, you lose everything, and if your eyes get worse, you won’t be able to do anything. You won’t be able to do any activities at all. Diabetes is not so bad since it is manageable as long as you exercise, but they say that glaucoma may cause blindness if not managed, so that’s scary. I fear that I may go blind. (Participant 10)

1) Feeling more exhausted with the progression of illness

Although the participants diligently applied eye drops and received regular medical treatment, their conditions did not improve, but rather got worse, so they felt despondent about their illness and became more and more disappointed. As participants recognized the absence of a cure for glaucoma symptoms, their skepticism and sense of despair about medical treatment were increased.

2) Fear of blindness, feeling like the end of life

The participants said that if they became blind, they would not be able to do anything and it would be like their life was over. Although it was not a fatal disease, their fear of blindness was so great that they thought it would be better to die. In a situation where it was difficult to expect improvement and it was unclear how far the situation would worsen, most of the participants suffered extreme psychological pain due to anxiety about losing their eyesight.

3) Emotionally crumbling

When participants were diagnosed with glaucoma, they felt despair that their bodies were completely destroyed. They didn't realize it at first, but as they suffered from pain through the treatment process, they gradually collapsed psychologically. They thought that these small eyes were controlling their entire body, and as their vision gradually became dimmer, they found themselves unable to do even small things on their own, and they felt more frustrated and depressed.

4. Following treatment without any other options

This theme cluster is related to participants’ feelings, perceptions, and attitudes throughout their never-ending glaucoma treatment. Even though they tried to look for a treatment, they felt frustrated when they realized that there was no cure for glaucoma and that there was nothing they could do. In such a desperate situation, the best thing they could do was to follow the medical staff’s instructions. However, they could not find the cause of their illness, and their skepticism about medical treatment was increased in a situation where their illness did not improve despite treatment.

I had eye surgery, but I couldn’t feel any difference. My eyes didn’t get any better, and the symptoms remained the same. Now, when they got worse, I went to the hospital for an eye exam and also went to the ophthalmology clinic, but they didn’t say it would get better or I would recover my eyesight. Instead, the doctors only said what’s happening to my eyes is that the eye nerves are dying. The doctor just said that my eyes were getting worse for that reason and didn’t cure them, so I even went to Seoul and also went to a large hospital. Even in a large hospital, they had no special treatment for it, and there was nothing I could do about it, so I just stopped trying to find a cure and now just keep applying eye drops every day.” (Participant 6)

1) Feeling disappointed and loss of energy due to the lack of treatment options

The participants said that even though they tried to find out the cause of their eyesight deterioration, they could not find definite causes, and that their eyesight had gradually worsened even while they were realizing it. Since the exact cause was not known, there was no cure even though they searched for a treatment method, and even though they went to various hospitals and received treatment, the only answer they got was, ‘If you don’t treat it, you will go blind.’ The participants gradually realized that there was nothing they could do to treat glaucoma.

2) The best treatment is following medical guidance

In this hopeless situation, the participants had no choice but to follow the doctor’s medical guidance and instructions. The best thing they could do was to receive regular medical treatment and apply prescribed eye drops. One participant felt tired of this endless treatment process, and thus even thought about stopping applying the eye drops.

5. Grateful for the help but feeling miserable

This theme cluster is about the perception of the reality that it is difficult for them to live independently due to visual impairment, and the feelings toward family members and people around them who provide help. The participants felt grateful for their family and people around them who helped them, but at the same time, they felt miserable about themselves for not being able to do anything alone. Some participants were living getting psychological stability by relying on faith in these difficult situations.

Even at a crosswalk, I cross the road with others when they cross, but I don’t cross alone … When I considering crossing alone, a young married woman said to me, “Grandmother, we can cross the road now,” and she held my hand and helped me cross the road. Yes, after I did it, my heart... (weeping) I felt like that … So, I held her hand and said thank you … Saying thank you … and at that time, I really, I really felt that way … I feel grateful when I meet people who help me like that … I’m so grateful … I feel grateful and thankful … (Participant 7)

1) Feeling pathetic about myself who cannot live without others’ help

Due to the progression of visual field defects in the eyes, the participants found it increasingly more difficult to perform daily activities independently. They thought it was pathetic when they found themselves having a hard time living without anyone’s help. Due to visual impairment, they were having a difficult time perceiving their physical limitations of not being able to do activities as they wanted to and not being able to do anything without help.

2) Thankful for the support of loved ones

Although the participants lost their energy and motivation for life and experienced frustration and despair due to visual field defects, they felt grateful for the help of their family and people around them who always helped and supported them. They felt both sorry for and thankful to their families who experienced various difficulties because of them, and they also felt very grateful even for the small help they received from strangers they met on the street.

6. Realizing the importance of eyes and health

This theme cluster depicts new perceptions, acceptance, and coping about eyes and health gained through experiencing glaucoma. The participant stated that although the eyes are a very small body organ, they are so important that people would think that losing eyesight virtually means the end of life. The participants keenly realized the importance of their eyes as they experienced the disease, and in the lifelong treatment process for glaucoma, they reluctantly accepted the illness as part of their lives and tried to overcome psychological pain such as despair, frustration, and anxiety. They were also making their best effort to manage and treat the symptoms, and hoped that their illness would not progress any further and they could live without losing eyesight until they die.

Because of eyes … these small things dominates the whole thing like this? This thought occurred to me … I used to drink too much and overwork without thinking about my body, but it made me think again about what is important, and I think it served as an opportunity to think about health. (Participant 5)

1) Realizing the importance of eyes and health

The participants said that although the eyes are a very small part of the body, they are important enough to dominate the entire body. They said that eyes are the most important of the sense organs, and it is so important that it would be better to be unable to speak than to become blind, and that becoming blind virtually means that your life is over. In this way, the participants keenly realized the importance of their eyes through the experience of the disease. They came to pay more attention to their eyes, and had an opportunity to think again about their health.

2) Accepting and adjusting to illness, living on

Due to the disease characteristics of glaucoma, the participants were having a hard time coping with an uncertain, prolonged treatment process to maintain the current condition rather than cure the illness. However, they were trying to live a life while accepting and adjusting to the treatment process of glaucoma, which is like going through an endless dark tunnel.

3) Doing their utmost to manage their eyes

The participants were constantly taking care and trying to protect their eyes and prevent them from getting worse. To maintain eye health, they were making every effort they could to take care of their eyes, including refraining from drinking alcohol, eating regular meals, and taking nutritional supplements.

4) Hoping it doesn’t progress further

The participants hoped that they would be able to continue to live in their current condition without the further progression of their visual field defects. Since people had to continue to live even in a helpless, distressful, situation without any hope, they were trying to have a positive attitude in their daily life. Meanwhile, some of the participants vaguely hoped that a cure for their disease would be developed in the near future.

As described above, patients with glaucoma was accidentally diagnosed with an unfamiliar disease. At first, they thought it was a minor disease, but they learned that it was a dreadful disease with no cure. However, as the disease progressed, they experienced difficulties in daily activities and limitations on their roles, and they began to experience feelings of frustration. In addition, as they gradually lost their eyesight, their fear and despair about the possibility of blindness increased. They realized that there was no other special treatment and that all they could do was follow the medical staff’s instructions, and they were trying their best to receive the treatment they could to prevent their eyesight from getting worse. Although they thought themselves pitiful about the fact that they were forced to receive others’ help, they also felt grateful to the people around them. As they experienced the disease, they realized the importance of their eyes and health, and they lived their lives taking care of their eyes and adjusting to their condition so that they would not lose their eyesight completely until the day they would die. Through this study, it was found that glaucoma patients suffer not only physical pain but also severe psychological pain. Therefore, it is necessary to provide specific nursing interventions and support policies that can empathize with their pain and provide psychological support for them.

Discussion

This study attempted to gain an in-depth understanding of the nature of glaucoma patients’ illness experience and explore its meaning by apply phenomenological research methods. The illness experience of glaucoma patients are discussed below, focusing on the theme clusters derived from this study

The first theme cluster named ‘The frightening disease unexpectedly discovered’ is related to the process in which the participants were diagnosed with a disease and the shock they felt when they faced the disease for the first time. This theme can be viewed as a unique characteristic observed in qualitative research on glaucoma, since it represents experience usually not observed in the illness experience of ordinary diseases. In the case of most diseases, such as Parkinson’s disease [20] and spinal disease [21], patients first feel symptoms and then go through the process of finding about the diagnosis at the hospital, but glaucoma generally has no symptoms in early stages, so patients are thought to perceive it as a sudden illness and feel at a loss and confused. As described above, glaucoma is a chronic progressive disease that often has no symptoms in early stages, so early detection of the disease is very important [3]. The Korean Glaucoma Society recommends that people in their 20s and 30s receive regular eye exams if they have diseases such as high myopia, high blood pressure, and diabetes, and that people aged 40 or older receive an eye exam once every six months or once a year. However, the participants were accidentally diagnosed with glaucoma while receiving treatment for other eye diseases without having ever received a test for glaucoma before. In addition, although they had heard of glaucoma, they were not clearly aware of what kind of disease it was. In a related previous study, 97.4% of respondents reported that they had heard of glaucoma, but only 32% knew that glaucoma is a disease difficult to cure [22]. In Korea, the rate of the glaucoma screening test is a very low level of 2.5%, and 74.2% of glaucoma patients are accidentally diagnosed at an ophthalmology clinic without feeling symptoms [22]. Taken together, these facts show that because the general public does not accurately know the disease characteristics of glaucoma, most of them do not recognize glaucoma, which is typically asymptomatic in early stages, and do not receive the glaucoma screening test, leading to a delayed diagnosis for many patients. Therefore, more efforts should be made to provide accurate information about glaucoma through various media and to emphasize the importance of an early glaucoma screening test. In addition, a method for increasing the rate of early glaucoma screening is thought to include an eye examination in the national general health screening program for the general public, like tests for high blood pressure and diabetes, considering the fact that high blood pressure and diabetes are asymptomatic chronic diseases like glaucoma, and tests for these diseases are included in the national general health screening program.

The second theme cluster named ‘A dismal life gradually trapped in darkness’ is related to the difficulties that the participants experienced in daily activities and working life due to various symptoms occurring with the progression of glaucoma. The participants in this study included people in middle adulthood according to Erikson’s theory of developmental tasks according to stages of psychosocial development, and middle adulthood is a period when people generally engage in active social activities based on their pride in their achievements [23]. However, during the course of the disease, the participants felt devastated when they could not carry out the roles they normally had performed at work and at home due to physical symptoms such as pain and visual field defects. A previous study also reported that if the progression of glaucoma leads to the rapid elevation of the intraocular pressure, various symptoms occur, including severe eye pain, visual loss, and headache, and even vomiting occurs in severe cases [24]. In addition, the participants were also found to come to lose vigor in life as they were no longer able to engage in hobbies they enjoyed, such as drinking and smoking. Another previous study also found that glaucoma patients feared that their social life would be restricted due to the disease [5]. Similarly, in this study, a participant engaged in the transportation industry reported that even though he recognized his visual impairment, for fear of losing his job, he hesitated to tell others about his symptoms for a long time. In the case of transportation or manufacturing workers, if they continue to work hiding their disease, it may lead to more serious accidents, so it is necessary to provide national-level support such as an employment policy to create jobs for glaucoma patients so that they can receive treatment comfortably without hiding their disease.

The third theme cluster named ‘Fear of the unseen’ revealed that the participants were living in pain every day, feeling fearful and anxious about the possibility that they might become blind due to symptoms that did not improve despite treatment. As apparent in the statement ‘If I become blind, it is like my life is completely over,’ the participants suffered from so severe psychological pain due to anxiety about blindness that they thought that if they became blind, they would not be able to do anything and it would be better to die. These results are consistent with the findings of a previous study [25], which reported that glaucoma patients suffer from psychological pain due to the possibility of complete vision loss, the absence of a cure, and the fact that the goal of treatment is to maintain the current state of the disease. These mental health problems increase stress levels, which may reduce medication adherence, accelerate the progression of glaucoma, and ultimately result in a vicious cycle [26]. Therefore, glaucoma patients should be provided with not only medical treatment but also nursing interventions and psychological intervention programs that can help them to cope with psychological problems. Unlike people with congenital blindness, people who lose their eyesight later in life have great difficulty adjusting to daily life, so a rehabilitation program for visual impairment is also required from the time when patients have partial vision loss in order to help glaucoma patients to cope with daily tasks, such as learning how to eat alone, before complete vision loss occurs [27].

The fourth theme cluster named ‘Following treatment without any other options’ reveals the helplessness felt by the patients who had difficulty actively participating in the treatment process due to the characteristic of glaucoma that it currently has no cure. As participants recognized the absence of a cure for glaucoma, their skepticism and sense of helplessness about medical treatment were increased. Although the participants faithfully participated in medical treatment to prevent blindness, they were performing the role of a traditional passive patient, and their scope of participation in treatment was mostly limited to administering eye drops as instructed and making regular outpatient visits since they had no other options. In a previous study, factors positively influencing patient participation were shown to include factors such as the characteristics of disease, the patient’s health status, and the patient’s experience, and the most important factors promoting patient participation were found to be ‘the attentive and kind attitude of the medical staff’ and ‘the medical staff’s description of negative health outcomes that may happen if the patient does not follow the medical staff’s instructions’ [28]. Therefore, if patients are sufficiently aware of the possibility of blindness due to the illness, medical staff should have an attentive and friendly attitude toward glaucoma patients to encourage their participation in medical treatment

The fifth theme cluster of this study was named ‘Grateful for the help but feeling miserable.’ This theme cluster showed the participants’ mixed feelings in that they found it pitiful and disheartening about the fact that they needed others’ help due to their dim vision, but they also felt grateful for the support of people around them. This finding suggests that it is necessary to provide national-level support to understand such feelings of glaucoma patients and help them. First, it is necessary to create an environment to ensure that glaucoma patients can consistently receive treatment. Since the intraocular pressure of glaucoma patients cannot be measured at home unlike blood pressure or blood sugar, outpatient visits are needed for glaucoma patients. However, the results of this study showed that as a glaucoma patient’s symptoms got worse, it became difficult for the patient to visit the outpatient clinic alone, and they required the help of a guardian even in daily activities. Therefore, there is a need to provide them with people who can give assistance necessary for them such as caregivers and social workers who can help glaucoma patients with visual impairment in their daily activities and hospital visits and provide them with psychological support. A similar system is the long-term care insurance system. The long-term care insurance system is available for individuals who are determined to have functional disability in activities of daily living for at least six months among people aged 65 or older or those under 65 with geriatric diseases such as dementia or cerebrovascular disease [29]. The results of this study also demonstrated that patients with visual field defects had difficulty performing daily activities on their own. Therefore, there is a need to supplement the existing long-term care insurance system and expand services to provide support for patients who have difficulty in performing activities of daily living due to visual field defects.

The sixth theme cluster of this study named ‘Realizing the importance of eyes and health’ showed that the participants fully realized the importance of their eyes and health, came to accept their disease in the end, and were trying to live on adjusting to the illness. Glaucoma is a chronic disease that requires lifelong treatment and management, and self-management is especially important [4]. In order for patients to live without losing their eyesight until they die, patients’ own efforts are needed, but it is also required to create a system in which society and medical institutions can consistently manage patients with chronic diseases. In Korea, chronic disease management fees are paid to medical institutions that have established a management system to help patients with chronic diseases who continuously visit medical institutions to understand their disease and prevent complications through educational counseling [30]. Currently, diseases that are recognized for chronic disease management fees include high blood pressure, diabetes, mental disorder, tuberculosis, heart disease, cerebrovascular disease, nervous system disorder, malignant neoplasm, thyroid disease, liver disease, and chronic renal failure. Therefore, it is necessary to include glaucoma in the chronic disease management fee codes as a method for establishing a management system to prevent complications through the introduction of the chronic disease management fee for glaucoma, and providing individualized education and counseling to patients to prevent patients from neglecting to receive treatment.

Conclusions

This study attempted to explore the essential nature and meanings of the illness experience of glaucoma patients by applying phenomenological research methods. The participants of this study were 10 people aged 50 or older who were diagnosed with glaucoma and had visual field defects. The analysis of the illness experience of glaucoma patients yielded 6 theme clusters, 16 themes, and 39 meaning units.

This study explored glaucoma patients’ perceptions, attitudes, and feelings regarding how glaucoma, which is called the silent thief of eyesight, affected patients’ lives and how glaucoma patients experienced the illness process. Through this inquiry, the present study presented the directions of nursing interventions for glaucoma patients. Based on an in-depth understanding of glaucoma patients, the results of this study are expected to help demonstrate the need for education on the nature of disease and proper use of drugs for glaucoma patients, the importance of the early glaucoma screening test, and the need for psychological and social support intervention programs.

In conclusion, this study showed that the participants as glaucoma patients experienced physical, mental, and social pain while going through the disease process. Therefore, along with medical treatment to relieve the physical symptoms of glaucoma patients, a psychological nursing intervention to understand and reduce their psychological pain should be provided. Additionally, policy measures for support are needed to minimize various social limitations that glaucoma patients may experience. In the future, based on the results of this study, further research should be conducted on the development and effectiveness verification of an education program and a psychological counseling program for glaucoma patients.

NOTES

Conflict of interest

The authors declared no conflict of interest.

Funding

None.

Authors’ contributions

Hyeon ae Lee contributed to conceptualization, data curation, formal analysis, methodology, visualization, writing-original draft, review & editing, investigation, and software. Seon Nyeo Kim contributed to data curation, formal analysis, methodology, visualization, writing-review & editing, resources, software, and validation. Hwa Young Kim contributed to investigation, resources, and validation. Sue Kyung Sohn contributed to formal analysis, methodology, project administration, writing – review & editing, supervision, and validation.

Data availability

Please contact the corresponding author for data availability.

Acknowledgments

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