Social alienation and related factors in patients with head and neck tumors undergoing radiotherapy: a cross-sectional study

Head and neck cancer (HNC) is a general term for malignant tumors occurring above the clavicle region defined according to the anatomical location of the human body, with squamous cell carcinoma accounting for more than 90% of the cases, and long-term exposure to tobacco, tobacco products, and alcohol is an important factor in its pathogenesis [1]. HNC ranks seventh among the most common malignant tumors worldwide. There are about 650,000 new cancer cases and 350,000 cancer deaths worldwide every year, and the 5-year survival rate is less than 50% [2]. Among them, China is a big country with HNC, with an annual incidence rate of about 15.34/100,000, accounting for about 10% of systemic malignant tumors [3].

Currently, depending on the TNM stage and primary site, the treatment modalities for HNC include surgery, radiotherapy, chemotherapy, and a combination of multiple therapeutic modalities (e.g., targeted therapy, immunotherapy), of which the integrated treatment is dominated by the combination of surgery and radiotherapy [1]. In recent years, with the progress at the medical level, especially the development of precision radiotherapy technology, the clinical outcomes of HNC have been significantly improved. But simultaneous radiotherapy and chemotherapy, while improving the survival rate of patients, also bring great economic burden as well as a series of toxic side effects such as nausea and vomiting, oral mucositis, pain, malnutrition, and changes in body image [4‐6], seriously affecting patients’ quality of life and psychological health, leading to patients’ reluctance to participate in society and increased social alienation(SA). The state of SA not only affects the physical and mental health and survival quality of individuals but also increases the pressure on the family and society of patients with HNC, which can lead to a series of social problems.

SA (Social alienation) refers to a state in which an individual or groups are alienated from the original collective and its social network relationships, isolated from others, unwillingness to participate in society, and experiencing negative coping behaviors such as indifference, avoidance, and accompanied by negative emotions such as loneliness and meaninglessness [7]. Studies have shown that cancer patients belong to a high-risk group for SA, with approximately 27–33% of cancer patients self-reporting SA [8]. SA not only affects the physical and mental health of patients and increases the risk of death from cancer, but also triggers a series of family and social problems, such as family estrangement, lack of family communication, poor family adaptation, and social dysfunction, which aggravates the burden of care on families and society [9]. A previous study showed that nasopharyngeal cancer patients have psychological problems such as SA and social discrimination [10]. A study led by Cai showed that patients with nasopharyngeal carcinoma experienced loneliness, embarrassment, and stigma due to the change in body image [11], and these heavy physical and psychological burdens inevitably affect the rehabilitation of patients. SA not only affects the cancer recurrence rate and long-term survival rate but also becomes one of the biggest barriers for cancer survivors to return to society [12]. Therefore, it is necessary to comprehensively analyze the difficulties faced by radiotherapy patients with HNC in returning to and participating in society and to find out the key factors affecting the patients’ SA, which is very important for formulating effective strategies to improve the management quality of SA.

Based on the fear-avoidance model developed by Newell [13], it is evident that patients’ social avoidance behaviors are predominantly driven by a psychological state of fear stemming from changes in appearance and function. Fear and avoidance constitute a form of conditioned reflex, sustained by learned cognitions that continually remind individuals of their perceived defects. In the case of HNC patients, complications arising from radiotherapy, such as body image disturbance [14], can induce this fear and avoidance. If patients are unable to effectively adjust their perception and acceptance of these bodily defects, they may persist in exhibiting social avoidance tendencies. Therefore, studying patients’ fear of disease progression can help nurse practitioners deeply analyze the potential and important influencing factors of SA of HNC patients and understand the avoidance behavior of patients, to guide the nursing practice of SA. McPherson referred to the excessive worry that cancer patients experience due to the impact of their illness and care needs on others, resulting in feelings of guilt, frustration, and burden, as self-perceived burden (SPB) [15]. SPB not only leads to a wide range of negative emotions and stress, but also adversely affects patients’ quality of life and mental health, and influences treatment decisions and prognosis [16]. Therefore, the study of patients’ sense of SA from the perspective of patients’ SPB can deeply reveal the internal psychological motivation of SA, provide an important starting point for formulating effective intervention measures, and have great significance for improving the quality of life and mental health of patients with HNC. Self-perceived burden also suggests the importance of social support [17]. By meeting patients’ social support needs, we can effectively reduce their SPB and promote their integration with society. One scholar has distilled the SA experience of cancer patients into three themes, one of which is patients’ desire for support (reliance on family support, gratitude to friends for support, and urgent need for professional support) [18]. Another study pointed out that the reason for patients’ SA was the lack of social support [19]. Therefore, emotional support, practical support, information support, and social support can help and support patients in different ways so that they can better cope with the disease, reduce SA, and reintegrate into society.

At present, relevant studies on SA for HNC are still in the initial stage in China. Most of the related research focuses on patients with lung cancer, breast cancer, colorectal cancer, and other types of cancer [19‐21], but there are few studies on patients with HNC treated by radiotherapy. Therefore, our research aims to investigate SA in patients with HNC undergoing radiotherapy, analyze the correlation between the fear of disease progression, self-perceived burden, social support, and SA in HNC patients, as well as to identify the influencing factors associated with SA. This study will improve the understanding of SA and its influencing factors in patients with HNC undergoing radiotherapy, and provide a scientific basis for formulating targeted intervention measures to meet the needs of patients returning to society and improve the nursing effect of HNC.

In this study, we found that the SA of HNC patients receiving radiotherapy was at the upper-middle level. The main factors that affect SA are occupational status, educational level, number of radiotherapy treatments, fear of disease progression, self-perceived burden, and social support. Some research results show that about 1/3 of nasopharyngeal cancer survivors suffer from radiation cognitive impairment due to normal brain tissue damage caused by radiotherapy, that is, attention, language, or executive ability are impaired [32], which will undoubtedly increase the difficulty of patients’ integration into society, so it is necessary to understand the SA of this group.

The results of this study showed that the total SA score of HNC radiotherapy patients was 33.45 ± 5.77, which was at a moderately high level compared with the total score of 60 on the scale, suggesting that most patients with HNC have a high level of SA, which was consistent with the results of the study by scholars Zhou Yi et al. [33]. The possible reason is that most patients are already in advanced stages at the time of diagnosis, which, coupled with a series of complications of radiotherapy damages the body image of patients, and the change in appearance will cause patients to develop an inferiority complex, thus actively reducing contact with others. At the same time, radiotherapy also affects patients’ speech and swallowing function, and the language barrier makes it difficult for patients to communicate effectively with others, which limits their social activities to a large extent. Moreover, most patients in this study are of working age and are the main source of income for their families. Under the double blow of poor prognosis and loss of their main source of income, they have bad psychology such as self-blame, suspicion, and a sense of meaningless feeling, which leads to SA.

Among the dimensions of SA in this study, the dimension of suspicion scored the highest, followed by self-alienation, other-alienation, and sense of meaninglessness. Suspicion can be used as a psychological defense mechanism to help patients temporarily escape the cruelty of reality. By doubting the diagnosis or treatment, patients can reduce psychological pressure to a certain extent and give themselves some psychological buffer time. In addition, influenced by the mainstream traditional culture of society, most people will show fear or prejudice towards cancer patients. When HNC patients perceive that they are discriminated against or alienated by others, they are prone to negative emotions such as doubt, helplessness, and lack of self-confidence, which alienate them from the surrounding people [34]. However, the sense of self-doubt is also a very painful experience, and individuals will face the process of self-examination and self-denial, patients with high doubt scores experience feelings of despair, depression and even more complex emotional responses. Therefore, medical personnel should attach importance to the sense of SA of patients with HNC, strengthen communication with patients, patiently answer patients’ questions and concerns, eliminate patients’ sense of doubt, establish and improve telemedicine follow-up and social support systems, reduce social prejudice and discrimination against cancer patients, and timely assess the level of SA of patients. At the same time, they can learn from foreign interventions on SA of cancer survivors, such as peer support, narrative therapy, mindfulness training, exercise therapy, and other ways to alleviate patients’ SA [35].

In this study, general demographic data of occupational status, education level, and number of radiotherapy treatments were significant factors affecting SA in HNC patients. The results show that retired patients have the highest sense of SA. This is possibly because patients’ social roles change after retirement, which reduces their self-worth, and coupled with the blow of illness, patients are more likely to doubt themselves, lack self-identity, and lose their original sense of purpose and meaning in life [36]. Work, on the other hand, gives patients a sense of purpose and mission and makes them feel that they are contributing to society. This positive self-perception helps to enhance their self-confidence and sense of value and reduce SA. The results of this study show that the SA of patients is significantly related to their educational level (p < 0.05), which is consistent with the findings results of Fang et al. [25]. This may be due to the fact that patients with higher educational level are more willing and able to utilize relevant resources to participate in social activities [37]. Fierloos et al. [38] also showed that patients with higher levels of education can seek psychological adjustment through more avenues and modalities, have higher levels of awareness of the illness, and are more likely to adopt positive coping styles to face the illness, and thus experience less SA. It is worth noting that the results of this study also show that patients’ SA had a significant difference in the number of radiotherapy treatments (p < 0.05), which is consistent with the report of Agatha [39]. An increase in the number of radiotherapy treatments means that patients are exposed to more radiation doses, which may lead to more physical side effects such as pain, radiation dermatitis, oral mucositis, and fatigue. These physical discomforts will make patients feel pain and weakness, and reduce their ability and willingness to participate in social activities. In addition, as the number of radiotherapy treatments increases, patients may become more concerned about their physical changes and health status [40], and long-term health problems and treatment processes may cause patients to feel their self-esteem is damaged, which in turn make patients more sensitive and isolated, thus increasing SA. Therefore, healthcare professionals should focus on patients who are in the retirement stage, with lower education level and in the late stage of radiotherapy. Retired patients can be encouraged to participate in community activities to reduce their SA, and patients receiving radiotherapy can be encouraged to make full use of online social platforms to keep in touch with other patients at home, share their life moments and obtain emotional support.

Fear of disease progression is closely related to patients’ SA, and the worse patients’ fear of disease progression, the worse their social function [41]. Our study showed that the stronger the fear of disease progression, the higher the sense of SA, which is consistent with that reported by Zhu et al. [42]. Fear of disease progression can lead to negative emotions such as anxiety and depression in patients. These emotional states lead to social withdrawal, further exacerbating patients’ sense of SA. In addition, fear of disease progression may make patients more concerned about their health and less willing to engage in social activities [43]. Even if patients still participate in some social activities, they may not be able to devote themselves wholeheartedly as before because of the physical and mental burden brought by the disease, resulting in a decrease in the quality of social interaction. This decline in quality will make patients feel that they have lost their sense of value in social interaction, which in turn increases SA. It is suggested that nursing staff can strengthen health education for patients and their families, help patients understand the disease in detail, guide them to face the disease correctly, reduce their fear of cancer recurrence, and help them actively cope with the challenges brought by the disease and maintain a good attitude.

Studies have shown that patients with heavy self-feelings burden self-perceived burdens are more likely to adopt negative coping styles, thus reducing daily activities and alienating themselves from social interactions [44]. In this study, there was a significant positive correlation between patients’ self-perceived burden and SA (p < 0.05), which was consistent with the findings of Wang et al. [45]. Patients with HNC may feel guilty and blame themselves because of the cost of treatment, interference with family life, and other factors. They think that they have become a burden on their families. This self-perceived burden will further aggravate their psychological pressure and make them more inclined to isolate themselves and reduce social activities. On the other hand, due to their high self-perceived burden, patients may tend to avoid social activities to reduce the sense of burden caused to others [44]. This social avoidance behavior gradually leads to a reduction in patients’ contact with society, family, and friends, which in turn enhances the sense of SA. Therefore, healthcare professionals must pay close attention to patients’ self-perceived burden, conduct regular assessments, and implement personalized psychological guidance and intervention strategies based on each patient’s specific level of burden.

Social support is the key factor to promote the physical and mental rehabilitation of cancer patients. Relevant research shows that social support is significantly related to the health-related quality of life of cancer patients [46], and good social support can improve the medical behavior of cancer patients and enhance their immune function. This study shows that social support is negatively correlated with patients’ SA, which is consistent with Katherine’s previous report [47]. This is because social support can enhance patients’ psychological resilience, reduce negative emotions, promote patients’ information acquisition and decision-making participation, and enhance their sense of belonging. These factors work together to make patients stronger, and more optimistic in the face of illness, thus reducing SA. A systematic evaluation study by Deckx et al. [48] showed that cancer survivors were prone to loneliness when they lacked psychosocial support. Loneliness is one of the main constitutive factors of SA [49]. Therefore, in clinical work, the social support system of patients should be actively mobilized to provide patients with comprehensive information, resources, and emotional support, to improve their coping ability in the face of stress, reduce the sense of loneliness, alleviate the psychological pressure when socializing, promote social interaction, thereby reducing SA.

The results of this study showed that the SA of HNC patients in Northeast China was at a moderately high level. Retirement, educational level, number of radiotherapy treatments, fear of disease progression, self-perceived burden, and social support were significant influencing factors. This suggests that healthcare professionals should focus on patients who are retired, have low literacy levels, and are undergoing radiotherapy, pay attention to the dynamic assessment of patients’ SA, strengthen symptom management and psychological care, focus on psychological counseling, formulate intervention strategies to alleviate patients’ negative emotions and promote multidimensional social support so as to reduce patients’ sense of SA.