Introduction

Cancer is one of the leading causes of death worldwide, with approximately 19.3 million new cancer cases and 10 million cancer-related deaths in 2020 (Sung et al., 2021). In addition, the number of cancer cases continues to rise, projected to reach 28.4 million by 2040 (Sung et al.,2021). Among the various types of cancer, lung cancer is the most frequently diagnosed (World Health Organization, 2022) and remains the leading cause of cancer-related death (Mao et al., 2016; Sung et al., 2021). Due to advances in early diagnosis and treatment (Triphuridet and Henschke, 2019; Wang et al., 2020; Zhao et al., 2019), the number of lung cancer survivors is increasing, and they are more likely to experience a long-term survivorship.

In China, lung cancer is the primary cause of cancer-related death for both men and women (Zheng et al., 2022). Lung cancer survivors often experience both physical and psychological suffering (McFarland et al., 2020; Yang et al., 2020), which significantly impacts their quality of life (Gu et al., 2018). Additionally, survivors frequently encounter symptom clusters, which means that they endure several symptoms simultaneously (Ma et al., 2022). For instance, a number of lung cancer survivors undergoing radiotherapy would experience breathlessness, fatigue, and anxiety concurrently (Chan et al., 2013). These symptom clusters are negatively related to their spiritual well-being (Choi and Ryu, 2018). Worse still, lung cancer survivors have lower physical well-being and endure more severe emotional distress compared with survivors of other types of cancer (Morrison et al., 2017; So et al., 2013). As the experiences of lung cancer survivors become increasingly complex and diverse (Fitch, 2019), it is essential to recognize and address their concerns and needs in order to ameliorate cancer care.

Although previous studies have investigated the experiences of Chinese lung cancer survivors, most of them have been quantitative in nature (e.g., Li et al., 2017; Li et al., 2020; Yan et al., 2019). Few qualitative studies have explored the post-diagnosis experiences of Chinese lung cancer survivors. In recent years, a growing number of cancer survivors have turned to blogs to share their experiences (Hookway, 2008; McCosker and Darcy, 2013). Consequently, blogs have great potential as valuable data sources for cancer research. To the best of our knowledge, no study has yet examined the post-diagnosis experiences of Chinese lung cancer survivors via their blogs. This study aimed to gain qualitative insights into the lived experiences of Chinese lung cancer survivors after their diagnosis by analyzing their blog entries on Xiaohongshu.

Materials and methods

Study design

Qualitative content analysis was employed to explore the lived experiences of Chinese lung cancer survivors, as this method is particularly appropriate for health research on patients’ experiences or studies with relatively small sample sizes (Neergaard et al., 2009). The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) to ensure comprehensive and transparent reporting (Tong et al., 2007).

Data collection

Data were collected from Xiaohongshu, a popular social media site in China. The majority of Xiaohongshu users are young people, who are required to register an account to post blogs. During registration, users provide their personal details such as their name, gender, and date of birth. Recently, an increasing number of cancer survivors have turned to social media sites like Xiaohongshu to share their experiences and seek information or emotional support (Attai et al., 2016; Koskan et al., 2014).

Data collection consisted of three procedures. First, the authors logged into Xiaohongshu to access lung cancer-related blogs. Subsequently, keywords, including “lung cancer” and “anti-lung cancer diary”, were used to identify relevant blogs written by lung cancer survivors. Finally, blogs were retained if they met the following inclusion criteria: (1) the blogs were written by Chinese lung cancer survivors; (2) the contents focused on the experiences, feelings, or perspectives of lung cancer survivors; (3) the blogs were posted prior to March 30, 2022; (4) these survivors posted at least 10 blog entries (Stuckey et al., 2021); and (5) these survivors received treatment in China. The selected blogs were copied literatim into Microsoft Word, resulting in 15 separate documents—one for each survivor. Images, videos, and comments related to the blogs were excluded. The data were reviewed three times to ensure consistency with the original blog entries on Xiaohongshu and then imported into NVivo 12 for qualitative analysis.

Data analysis

Data were coded and analyzed using qualitative content analysis (Graneheim and Lundman, 2004). The qualitative analysis software NVivo12 was utilized to organize and analyze the data. In line with Graneheim and Lundman’s (2004) procedures for data analysis, the sentence was determined as the unit of analysis and then divided into meaning units, which were manually annotated and coded using NVivo 12. These meaning units were subsequently grouped into “nodes” (representing subthemes), which were repeatedly reviewed and analyzed to produce overarching themes. Two researchers discussed discrepancies in the data analysis. If they could not reach an agreement, a third researcher would be consulted to facilitate a consensus. The coding process is illustrated in Table 1.

Table 1 Coding process.
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Data collection and analysis occurred concurrently. As data collection started, meaning units were extracted from lung cancer survivors’ blogs. Data saturation was achieved after analyzing blogs from 13 participants. To confirm saturation, blogs from two additional participants were included. Therefore, blogs from 15 participants were involved in this study.

Trustworthiness

Graneheim and Lundman (2004) suggested the use of credibility, dependability, and transferability to establish the trustworthiness of a qualitative study. To ensure trustworthiness, the study focused on enhancing the three criteria. Credibility was strengthened by employing an appropriate data collection method and a thorough data analysis. Two researchers repeatedly read, analyzed, and discussed the blog entries. When discrepancies occurred, they were addressed through discussion. If a consensus could not be reached, a third researcher would be consulted to facilitate agreement. Dependability was reinforced by using analytic memos, which fostered the continuous review of the blogs to ensure the consistency of results over time. Transferability was supported by a detailed presentation of the characteristics of the lung cancer survivors and their blogs, as well as a vigorous description of the findings, allowing for the potential application of the findings to other contexts.

Ethical considerations

Blogs posted on public social media sites are exempt from ethical approval or clearance (Eastham, 2011; Thomas et al., 2018; Wilson et al., 2015). Additionally, informed consent is not required from bloggers, as the blogs are publicly accessible and not password-protected (Hewson and Buchanan, 2013). However, ethical considerations remain. To protect the privacy of lung cancer survivors, pseudonyms were used, and any identifiable information was anonymized or removed. The quotes from the included blog entries were directly cited in the study, as linking the quotes to the original blog entries after translation from Chinese to English would have been difficult. (“P” refers to lung cancer survivors in this study.)

Findings

Blogs’ and lung cancer survivors’ characteristics

A total of 417 blog entries from 15 lung cancer survivors were included in this study. Participants’ age at the time of diagnosis ranged from 15 to 54 years, with a mean age of 33.8 years. The total length of selected blog entries amounted to 128754 Chinese characters, with an average length of 308.8 characters per entry. The blog entries were posted between August 27, 2019 and March 30, 2022 (the distribution of blog entries by year is shown in Fig. 1). The participants consisted of one male and 14 female lung cancer survivors. Most participants (n = 7) were diagnosed with stage IV lung cancer, while one participant was diagnosed with stage III, one with stage II, and two with stage I lung cancer. The remaining four participants did not provide information on the stage of their disease. Participant demographics are summarized in Table 2.

Fig. 1
figure 1

Distribution of blog entries by year.

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Table 2 Participant demographics.
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Inductive content analysis generated five themes: (1) reasons for reluctance to accept their diagnosis; (2) treatment and its side effects; (3) emotional responses to their illness; (4) emotional support; and (5) lung cancer disease management. The themes will be detailed in the following sections.

Theme 1: reasons for reluctance to accept their diagnosis

Lung cancer survivors in our data maintained that a family history of cancer, exposure to harmful air, and unhealthy living habits were main factors that associated with the diagnosis of lung cancer. However, most of them have not been exposed to these factors, which led to their reluctance to accept the diagnosis.

The theme elaborated on the reasons for lung cancer survivors’ hesitation to accept their illness, which included three subthemes: not having a family history of lung cancer, being not exposed to harmful air, and maintaining healthy living habits.

Not having a family history of lung cancer

Lung cancer survivors considered family history of cancer as a potential factor in the development of the disease. However, many participants claimed that they had no family history of cancer, which resulted in their surprise and even doubts about the accuracy of their diagnosis.

P6: I’m in good shape, and I don’t have a family history of cancer. So, my family and I thought the diagnosis might be a mistake.

Being not exposed to harmful air

Some participants regarded harmful air exposure as a potential cause of lung cancer. However, they mentioned that they rarely did the cooking, and therefore had minimal exposure to kitchen oil fumes. Additionally, they were seldom exposed to secondhand smoke. Therefore, the non-exposure to harmful air led to their unwillingness to accept the lung cancer diagnosis.

P6: My husband doesn’t smoke, and my father never smokes at home. I also rarely cook diner because I’m busy with work. (So, I’m hardly exposed to harmful air.)

P7: I suspect the diagnosis might be a mistake because I don’t smoke or cook.

Maintaining healthy living habits

Lung cancer survivors attributed the diagnosis of lung cancer to unhealthy living habits. However, many of them reported that they maintained good behavioral habits. For instance, these survivors emphasized that they did not smoke or drink alcohol and engaged in regular exercises. As a consequence, they found it difficult to believe that they could develop lung cancer.

P8: I usually get up at six o’clock and exercise for an hour. I don’t smoke or drink alcohol, and I don’t have any other bad habits.

Furthermore, some survivors mentioned having a healthy diet and maintaining a regular daily routine.

P15: I have a regular routine and keep good eating habits. So, I’m unwilling to accept that I’ve been diagnosed with lung cancer at such a young age.

Theme 2: treatment and its side effects

This theme addressed the treatment experiences of lung cancer survivors, highlighting the treatment they underwent and the side effects they suffered from.

Treatment modalities

Lung cancer survivors have received various treatment modalities, including targeted therapy, chemotherapy, radiotherapy, electrotherapy, and immunotherapy. Most survivors underwent targeted therapy and chemotherapy, while a number of survivors also used traditional Chinese medicine as a long-term supplement to their treatment. Furthermore, many survivors received multiple treatment modalities simultaneously.

P7: Last year, I received chemotherapy five times and electrotherapy four times.

P2: I’ve been taking Osimertinib and traditional Chinese medicine for about four months. This was my second physical examination since starting treatment, and the result shows that my tumor has shrunk.

Side effects

In this study, lung cancer survivors often suffered from a range of side effects from the treatment they underwent. They endured both physical limitations and psychological distress.

Some survivors experienced one or two side effects, while many suffered from multiple, interrelated symptoms. The great physical suffering frequently affected their sleep quality and caused tremendous psychological pain.

P2: I’ve been suffering from many side effects caused by medicine, like loss of appetite, nausea, vomiting, weakness, and itching.

P14: My cough and expectoration are getting worse. Since yesterday, every time I coughed, my back hurt. I can’t even describe how painful it is.

Theme 3: emotional responses to their illness

The theme delineated how lung cancer survivors emotionally responded to their illness and involved two subthemes: positive emotions and negative emotions. Survivors experienced a mix of both positive and negative emotions. While survivors displayed negative emotions in their blogs, the main tone remained positive and optimistic. Additionally, survivors’ complex emotional responses were closely related to their illness trajectories.

Positive emotions

Lung cancer survivors expressed feelings of luck for receiving treatment and being alive. In addition, they also felt fortunate when physical examinations indicated that their lung cancer did not deteriorate.

P5: Compared with those who died in an accident, we, the sick, were so lucky because we still have time to receive treatment.

P13: I have a check-up every three months. If the cancer deteriorates, I’ll receive treatment. If not, I’ll return for another check-up in three months. Fortunately, the examinations have shown no deterioration over these years.

Lung cancer survivors expressed delightfulness when their physical examination showed normal indicators, believing that the treatment had positively impacted their health. Additionally, many survivors also conveyed delightfulness due to experiencing fewer side effects.

P10: It’s been almost ten days since I left the hospital. My health is gradually improving, and my cough has lessened. I’m really happy.

P5: My doctor said that I wouldn’t lose my hair after taking this medication. I’m so glad.

Lung cancer survivors also conveyed their thankfulness to their families, friends, medical professionals, and even strangers (e.g., users on Xiaohongshu) for their emotional support. Particularly, they displayed their gratitude for the care and companionship of their families.

P5: I am very grateful to the doctors and nurses, my parents and parents-in-law, my sister, and especially my husband. He’s been by my side throughout my surgery, chemotherapy, and physical examinations.

P7: I feel warm and touched by your (users on Xiaohongshu) care. Thank you for your continuous support from the beginning of my treatment.

Negative emotions

Lung cancer survivors exhibited fear and anxiety related to their diagnosis, treatment and its side effects, as well as illness deterioration.

P5: Tomorrow I’ll have my second round of chemotherapy. I heard that the side effects would worsen with each treatment. I’m scared of chemotherapy, and I hope it will be over soon.

A few survivors described feeling hopeless when their treatment did not meet their expectations or when their illness deteriorated.

P2: The cerebrospinal fluid test result indicates that there’s no mutation. I’ve been waiting two weeks for the mutation result, and after seeing this, I feel hopeless.

Notably, some survivors also indicated feelings of pity for themselves because there were still a number of things they wanted to do. However, their illness limited their ability to pursue these goals.

P9: I still want to do many things, like becoming a psychotherapist, dancing, illustrating, and doing pottery. There are so many things I want to do, but I can’t do anymore. I need to take medication for life, and I can’t do strenuous exercise, so I can no longer dance or swim.

Theme 4: emotional support

This theme consisted of two subthemes: emotional self-care practices and emotional support from families and friends. It illuminated the sources of emotional support for lung cancer survivors and the types of emotional support they received. Survivors obtained emotional support from a variety of sources, particularly from their families and friends. The emotional support helped them overcome emotional difficulties and enhanced their confidence in fighting the illness.

Emotional self-care practices

Lung cancer survivors frequently offered self-encouragement in their blogs, reminding themselves not to be immersed in their disease, but to seize the moment by doing something meaningful.

P6: Since I can’t decide how long I’ll live, there’s no use thinking about it. It’s better to do something useful, such as actively receiving treatment, exercising, and maintaining a positive mood.

P7: I don’t want my mom to worry about me, so I need to be strong.

Emotional support from families and friends

Lung cancer survivors received emotional support from their families, friends, medical professionals, and even strangers. Their families and friends provided care and companionship throughout treatment, offering encouragement and comfort during moments of emotional breakdown.

P13: I am quite grateful to my husband’s family. They’ve always been there to comfort me when I was feeling down.

P10: When my friends learned that I was diagnosed with lung cancer and needed surgery, they did everything to offer me psychological support. I feel really touched.

Survivors who posted their blogs on the public media site Xiaohongshu also received encouragement from strangers. Other users and followers could comment on their blog posts, offering words of support.

P4: I’m really thankful to the strangers who have encouraged me. I got motivated from their encouragement.

Theme 5: lung cancer disease management

The theme consisted of six subthemes: balancing workload, maintaining a healthy diet, cultivating hobbies, maintaining cheerfulness, keeping early hours, and exercising moderately and regularly. It described how lung cancer survivors adapted their lifestyles to manage their illness in daily life.

Balancing workload

After being diagnosed with lung cancer, the majority of lung cancer survivors chose to resign from their current job or reduce their workload. The treatment they received caused numerous side effects, resulting in significant physical and mental pain, which made it difficult for them to work for a long time. Therefore, survivors favored flexible work arrangements that allowed them to adjust their hours and workload in accordance with their physical condition. Unfortunately, this shift often increased their financial burden.

P11: After my fourth chemotherapy on March 31, I began to work off and on. I was on duty in September. My job is flexible, so I can take a break when I feel tired.

Maintaining a healthy diet

Since their diagnosis, lung cancer survivors have become more cautious about their diet. They attempted to keep their diet light, fresh, and clean. Additionally, they also decreased their meat consumption and prioritized varieties of vegetables and fruits to meet their nutritional needs. Furthermore, they also monitored their amount of food intake to avoid overloading on their stomachs.

P1: I still keep a normal diet, eating fresh vegetables, fruits, and grains. The more variety of foods you eat, the better it is for your body. I cook my meals myself and rarely buy ready-made meals, because I’m concerned about food additives, which may taste good but are not healthy.

P15: Since I fell ill, I’ve reduced my meat intake and now only eat a small amount occasionally.

Cultivating hobbies

A significant number of lung cancer survivors have developed diverse hobbies, such as gardening, playing the guitar, and engaging in reading and drawing, to stay occupied and bring vitality into their lives. These activities helped divert their attention from the cancer diagnosis and maintain a positive outlook.

P1: After more than 20 days of work, my vegetable garden is thriving. I weed it every day, and seeing the shoots grow fills me with happiness.

Maintaining cheerfulness

Lung cancer survivors acknowledged that keeping cheerful was beneficial to their recovery and health. As a result, they frequently gave themselves positive psychological cues to maintain a positive attitude. Furthermore, they claimed that engaging in activities they enjoyed also played a significant role in improving their mood.

P1: Staying happy every day is good for lung cancer patients.

P2: Doing things I enjoy and keeping busy make me happy. A happy mood helps me fight against the lung cancer.

Keeping early hours

Lung cancer survivors reported that they have stopped the unhealthy habit of staying up late and developed the routine of keeping early hours. They found that keeping early hours had a positive impact on their mental well-being.

P13: I no longer stay up late. Keeping early hours makes me feel refreshed, and I can do more meaningful things during the day.

Exercising moderately and regularly

The majority of lung cancer survivors would exercise regularly and moderately, believing that regular exercises offered multiple benefits, such as improving their mood and alleviating their side effects. Survivors typically chose activities like walking, cycling, jogging, and swimming. Additionally, they would adjust the form and intensity of exercise according to their physical condition.

P15: I keep walking over 8000 steps a day. The regular exercises clearly refresh me and improve my metabolism.

Discussion

Lung cancer survivors often experience significant physical and mental pain, which severely impacts their quality of life. To enhance our understanding of the post-diagnosis experiences of Chinese lung cancer survivors, this study qualitatively analyzed their blogs on Xiaohongshu. The inductive content analysis produced five themes: (1) reasons for reluctance to accept their diagnosis (not having a family history of lung cancer, being not exposed to harmful air, and maintaining healthy living habits); (2) treatment and its side effects (treatment modalities and side effects); (3) emotional responses to their illness (positive emotions and negative emotions); (4) emotional support (emotional self-care practices and emotional support from families and friends); and (5) lung cancer disease management (balancing workload, maintaining a healthy diet, cultivating hobbies, maintaining cheerfulness, keeping early hours, and exercising moderately and regularly).

The current study revealed that Chinese lung cancer survivors were reluctant to accept their diagnosis. This aligns with a previous study, which has observed that lung cancer survivors use denial to respond to cancer diagnosis (Ellis et al., 2013). Nevertheless, the previous study did not explain the specific reasons for survivors’ unwillingness to accept the diagnosis. This study identified three factors that hindered survivors from accepting their diagnosis: no family history of lung cancer, no exposure to harmful air, and maintaining good living habits.

Chinese lung cancer survivors receiving chemotherapy encountered a wide range of side effects, such as hair loss, nausea, and vomiting, which led to both physical and mental pain. A prior study also confirmed that the side effects of chemotherapy can induce physical limitations, such as decreased flexibility and inability to work, resulting in great disruptions to survivors’ daily routine (Aumann et al., 2016). To relieve these side effects, survivors in our dataset have turned to traditional Chinese medicine for long-term cancer management. Research indeed demonstrated that traditional Chinese medicine plays an important role in improving physical and functional outcomes for lung cancer survivors (Tang et al., 2016) and decreasing their risk of death (Liao et al., 2017).

This study demonstrated that lung cancer survivors felt hopeless and anxious due to their diagnosis, treatment side effects, and illness deterioration. Likewise, a previous study also reported that lung cancer patients would experience negative emotions like anxiety and depression (Yan et al., 2019). When treatment did not meet their expectations or when their illness deteriorated, survivors often experienced feelings of hopelessness. This finding resonates with a previous study, which revealed that lung cancer survivors feel hopeless when their symptoms worsen (Refsgaard and Frederiksen, 2013).

Lung cancer survivors received emotional support from multiple sources, including themselves, their families, and friends. The emotional support helped them overcome negative emotions and enhance their confidence to cope with their illness. Notably, survivors and their peers often provided mutual encouragement in their blogs. Several participants mentioned that they have obtained useful suggestions on illness management and emotional support from their peers. Similarly, previous research also highlighted that peer support helps improve the self-efficacy and self-regulation on healthy lifestyles among lung cancer survivors (Webb and McDonnell, 2018).

To promote recovery and prevent symptom recurrence, participants in this study prioritized maintaining healthy lifestyles after their diagnosis. Most participants reported engaging in regular exercises, as they found that regular and moderate exercises were beneficial to side effect management. Previous studies have suggested that physical activities can contribute to better treatment outcomes and improved quality of life of lung cancer survivors (Avancini et al., 2020; Bade et al., 2015). Of note was that a large percentage of survivors have cultivated hobbies to avoid constantly focusing on their diagnosis. Cultivating hobbies helped them maintain a positive mood, which in turn was instrumental in improving their quality of life.

This study has several limitations. First, the majority of participants were middle-aged women due to the unavailability of blogs written by male survivors. Only one male survivor was included in the study, therefore, future studies could involve more male cancer survivors. Second, lung cancer survivors at various stages of the disease were included. The stages of cancer may affect the way survivors deal with illness and express their experiences in blogs, potentially impacting the study’s findings. Future studies should consider the cancer stage of participants. Additionally, this study included blogs written by 15 lung cancer survivors who were willing to share their experiences on Xiaohongshu. Thus, the self-selected group may not fully represent the experiences of the whole population.

Conclusion

The study provided valuable insights into the experiences of Chinese lung cancer survivors, contributing qualitative evidence to research on this population. It highlighted the reasons why survivors were reluctant to accept their diagnosis, the treatment they received and side effects they suffered from, their emotional responses to lung cancer, the emotional support they obtained from various sources, and their strategies for managing the disease. The findings can help healthcare professionals gain a deeper understanding of the lived experiences of survivors, enabling them to provide patient-centered care and emotional support for these survivors. Additionally, the study has demonstrated the value of online blogs as a tool for exploring the experiences, perspectives, and feelings of lung cancer survivors. Blogs register enormous potential in medical qualitative research, providing rich data resources for further studies.