The sample size was determined by the principle of data saturation, that is, when the respondents’ data appeared repeatedly and there was no new theme after data analysis. 21 participants were finally determined, including 12 males and 9 females, aged 24–76, with an average age of 44. The general characteristics of the interviewees are displayed in Table 2.
Each participant was interviewed only once, lasting from 43 to 85 minutes (with an average duration of 56.75 minutes). Through the analysis, comparison, and induction of the interview data of 21 ENKTL patients, it is concluded that the disease experience described by this group of patients is a complex and multi-dimensional process, involving multiple themes such as physical, psychological, daily life, and social support. These intertwined themes exhibits a vivid picture of the struggle between patients and diseases. Understanding these topics can help medical teams and society better understand and support patients, providing them with more comprehensive and humanized care and treatment.
Physical Challenges and Adaptation
This category represented that participants described the physical fatigue, pain, and symptoms related to disease patients suffered from the long journey.
Symptom Burden
Extranodal NKT cell lymphoma mainly affects the nose, skin, digestive tract, and other parts, and the accompanying symptoms, such as pain, fatigue, and insomnia bring great pain to the patients: 'It smells terrible on the body' (C3), 'I have always had sensitive skin, and now it's like snow on my body every day. There is dander everywhere on the bed sheet after getting up' (C13), or 'I feel pain when inhaling' (C2). These symptoms cause patients to experience pain, discomfort, and a low quality of life every day, seriously affecting their daily life activities as patients describe they, 'Only stay at home every day' (C3) and demonstrate, ‘'Fear of going out, too ugly' (C15).
Shift in Social Roles
The disease not only brings physical pain to patients but also changes their social roles and identities due to changes in appearance and the consultation process. 'Originally, they had a good career, but now they have to resign to treat the disease' (C4), 'originally planned to get married this year, but now they have broken up' (C5).
Psychological Stress and Adjustment
This category encompassed the denial of dissatisfaction resulting from delayed diagnosis and the fear induced by the uncertainty of treatment.
Denial and Anger
The lesions of 16 patients (80%) with denial and anger occurred in the extranodal natural killer/T-cell lymphoma, nasal type. The early symptoms were mainly nasal congestion, runny nose, and nasal bleeding. Among them, 7 patients (nearly half) had experienced repeated misdiagnosis as sinusitis and chronic rhinitis. Delayed diagnosis or untimely referral often led to the dissatisfaction of this group of patients. They all expressed shock and denial, such as: 'Unbelievable', 'Impossible', or 'How can I get cancer?’ 'I was diagnosed with this disease at the beginning of last year. It feels like people have no energy at once. I didn't think it was still a bad disease...' (C2).
Delayed Diagnosis
Due to its rarity, the public's, the patient themselves, and even some medical professionals, have limited awareness on the disease. Furthermore, the limitations of medical diagnosis and treatment aggravates the psychological burden of the patients. This uncertainty will increase the patient's fear, anxiety, and fear of death as patients recollected that they have, 'Never heard of this disease' (C1), 'Can it be treated? I relayed between many hospitals, and initially, it was treated as rhinitis' (C2). Patients may also be worried about the disease’s progress, treatment’s effect, and its impact on their future lives: 'I still doubt it' (C1); 'I relapsed for the third time this time, I don't know if it can be relieved after chemotherapy, and I don't dare to think about it now. I don't know which day I will leave.' (C16). The above psychological burden may lead to depression, insomnia, and other psychological problems, such as C5: 'I can't sleep every night, and my mind has been wandering (worrying about a lot of things).'
Coping with Psychological Stress
This group of patients described various psychological coping mechanisms during the diagnosis and treatment of the disease. Most patients (15) will try to adjust their mentality, actively face the disease, and find inner strength and support. "I want to maintain a peaceful mind, and constantly give myself strength in my heart, which may improve the therapeutic effect?" (C2), actively cooperate with the treatment, looking for hope, "I strictly follow the doctor's requirements for treatment, the doctor is the expert in this area, only by actively cooperating with him, there may be a glimmer of hope. (C19)" However, for some patients, ignoring the diagnosis and its consequences is another coping strategy (C9, C17); a patient (C6) avoided telling a friend about the diagnosis to avoid discussion on the matter. Another patient (C18) refused to search for disease-related information on the internet; the fear and rejection of the above patients are mainly caused by the uncertainty of the future and the course of the disease.
Reorganization and Adaptation of Daily Life
This category referred to the disruption and reorganization of the patient's original life trajectory due to symptoms, disease diagnosis, and treatment needs.
Focusing on their Illness
The patients' experiences led to a significant shift in priorities, moving from family, work, and other responsibilities to their health status. For instance, C10: “My child is preparing for the middle school entrance examination, a task I used to handle, but now, I've had to set it aside, focus on my health, and recover to see his future. ” “My work is quite demanding, and I was pursuing an undergraduate degree through self-study. But I had to give it up. I've been ill for 3 years, and my only concern is whether I'll survive. ” (C5).
Focusing on the Present
The patients in this group all stated that the current important task was to cooperate with the medical team, and they had no energy or willingness to ruminate about the past or think about the future. "I don't dare to think about the future. Just like fighting monsters, I don't know if I will be eaten by the monster (disease) tomorrow." (C15). "Occasionally, I recalled the past life, but it would make me feel very down, so I forced myself not to think about it." (C12) .Eager to solve the current symptoms, the patients hoped to improve the current quality of life, "It hurts too much, and it's very uncomfortable every day. Is there any way to relieve it?" (C17) "I'm very weak and have no strength. I don't eat well. What should I do?" (C7).
Life Reorganization
Since patients were affected by treatment and symptom distress, their daily lives needed to be reorganized. Many adjusted their work and study plans, changed their eating habits, and increased their rest time. For example, C3: "I used to love eating spicy things, but now, on the one hand, I can't eat well, and on the other hand, the doctor doesn't allow it." "I don't think about career planning anymore. I just want to rest well and treat well now." (C15). At the same time, they also needed to adapt to the life rhythm of frequently going to the hospital for treatment. All 18 patients were from outside of Shanghai. Seeking medical treatment from other places and frequently traveling to and from the hospital has become an essential part of their daily lives. This adaptation process was not only a test of the patient’s physical and psychological conditions, but also a trial for coping ability.
Seeking and Grateful Feedback
This meant that during the course of the illness, patients would actively seek supports from family, friends, medical teams and fellow patients, and were also willing to share the experiences with other patients.
Social Supports
The support sought by the patients in this group came from close family members, close friends, and the main medical team. This kind of support could not only help them cope with physical challenges but also relieve their psychological stress. For example, C11 revealed: "My wife has been with me and encouraged me…My daughter has been asking for leave to accompany me to see a doctor" (C13). All the patients in this group stated that because extranodal NKT cell lymphoma is very rare, they learned through multiple channels that Dr. Tao (the attending doctor) and his team have rich treatment experiences, which gave them greater confidence and hope.
Shame and Escape
The nasal type and skin type accounted for the vast majority of the patients in this group. Appearance damage, bad smell, were important reasons that caused patients to feel ashamed or embarrassed. One of the patients mentioned that her appearance was very important to her, and obvious symptoms would cause insecurity (C5). Two patients reported that due to these insecurities, they avoided social activities (C5, C6). There were also two patients with cutaneous lymphoma (C10, C21) who were often told to pay attention to sun protection and not to expose their skin to the sun for too long, so they preferred to stay at home alone and avoided going out. At the same time, some patients (C10, C18) noticed that people kept them away from patients, thinking that they had contracted a certain infectious disease, and people were afraid of being infected. Patients would also worry about discrimination from the outside world and demonstrate increased social withdrawal behavior.
Grateful Feedback
All the patients in this group expressed their willingness to share their disease-fighting experiences and mental journey to provide support and encouragement for other patients. For example, C20: "This disease is too rare. I hope that through my description, I can help others", "I have taken a long and wrong way. I hope that through my experience, others can take fewer detours" (C14). Most, especially younger patients, proposed that if a patient group or a public welfare organization for extranodal NKT cell lymphoma could be established, it would be able to popularize the prevention and rehabilitation of this disease.