In this study, we found that the majority of postoperative oral cancer patients reported moderate levels of stigma, which is consistent with the stigma levels experienced by HIV/AIDS patients in Fife and Wright’s study. Studies have shown that many patients are prone to stigma owing to body image loss, reduced self-esteem, and a sense of shame, and postoperative oral cancer patients are especially susceptible because of the facial deformity and dysfunction they experience[38, 39]. Furthermore, Chinese social culture imposes specific influence that tends to cause patients to worry about the potential consequences of cancer, such as loss of body image, becoming dependent on others, being a burden, and not being able to socialize. Additionally, oral cancer patients may be at further risk of being stigmatized because this cancer is seen as a “self-inflicted” disease, and this negative self-perception can make patients feel ashamed.
With respect to demographic variables, male patients had a much higher risk of suffering from stigma than females, which was different from previous studies. We speculate that this difference may be a function of the specific nature of Chinese culture and the age of the patients. Most of the participants in this study were middle-aged men who were the main economic pillars in their respective families; in China, this population shoulders the greatest social responsibilities. When they became ill, their working capacity was reduced and their income level declined, which led to further, and more serious, stigma for male participants. We also found that higher education levels and average incomes were related to lower stigma, which is consistent with previous findings. Cancer is such a taboo topic in China that it is easily associated with uninformed and misinformed social identification. Patients with more education have more and better access to information, which enables them to obtain disease-related knowledge and to better understand their condition. Moreover, as part of one's personal social resources, a higher education level and an average income can greatly reduce the psychological and financial stress caused by cancer diagnosis and treatment. In view of this finding, governments should invest in more subsidies for postoperative oral cancer patients to ease their high cancer treatment costs, while healthcare staff should pay more attention to male postoperative oral cancer patients with lower education levels and lower incomes.
Patients who smoked and those who chewed betel quid experienced greater stigma. The prevalence of oral habits such as betel-quid chewing, smoking, and alcohol consumption are cause for concern worldwide because of their strong connection to oral cancer. In traditional Chinese culture, cancer is regarded as an “bad omen”; suffering from cancer is equivalent to being sentenced to death. Chinese people often talks about "cancer discoloration" and associates cancer with “dirty” and “sin.” These people believe that the emergence of cancer is not only a punishment in the present life, but also a repayment of debts in the previous life, which becomes “causal reincarnation.” Therefore, some postoperative oral cancer patients who have smoked and practiced betel-quid chewing regret having engaged in those habits. It also constituted an important social source of stigma for postoperative oral cancer patients in the present study. Thus, strengthening national and local tobacco- and betel-nut-control policies is critical to reduce this growing cancer burden in China.
In this study, type of oral cancer and pathology type were important influencing factors of stigma. Treatment for oral cancer is complex, and can lead to functionality issues such as dysphagia and breathing difficulties, as well as impose the cosmetic burden of facial disfigurement. Importantly, facial disfigurement is consistently associated with the development of shame and the perception of stigma. Furthermore, squamous cell carcinoma (SCC) is prone to recurrence, which interrupts the patient's career while simultaneously causing stigma and increasing their social and economic burden. High levels of stigma not only have a negative impact on follow-up treatments, including treatment compliance, treatment-seeking behaviors, self-esteem, and social adaptation, but are also harmful to patients’ recovery. Given these considerations, healthcare staff should provide individualized support that focuses on helping patients adjust to their illness and its negative impact on their body image.
We also found that coping style was an important influencing factor of stigma. Stigma was significantly and positively associated with confrontation. As a negative coping styles, conversely, a higher level of “avoidance” was correlated with a higher level of stigma among postoperative oral cancer patients. Our study indicates that stigma is more common in postoperative oral cancer patients who have problems dealing with stress. A “confrontation” coping style describes patients who pay attention to their disease and actively seek support and help from others. An “avoidance” coping style may regulate patients’ emotions and behaviors after oral cancer surgery. Furthermore, avoidance may decrease a patient's social participation and negatively impact their attitude toward daily life. Therefore, it is necessary to provide psychological interventions and coping-skills training for postoperative oral cancer patients experiencing stigma. Healthcare staff should help postoperative oral cancer patients establish the belief that disease adaptation can help them adopt positive coping styles and thereby decrease the degree of stigma.
In our study, the dimension “objective support” was negatively associated with stigma. Objective support refers to practical support, which includes direct material support, the existence of and participation in social networks, and group relations. For numerous possible reasons, social support can help patients regulate their emotions and problem-solve, which can enhance their resilience when facing stigma and thus provide a buffer from experiencing stress. Objective support, moreover, mitigates some of the negative consequences of stigma. Thus, these findings can inform and guide future interventions that focus on developing the role of objective support to help patients cope with feeling stigmatized.
In this study, self-efficacy was found to be an important predictor of stigma in postoperative oral cancer patients. As a self-regulating factor, self-efficacy can help people quickly recognize and respond accurately and effectively in a changing environment. It can also motivate those suffering from pain to actively seek more adaptable coping strategies, and improve compliance and prognosis. When individuals are confronted with painful difficulties in life or are excluded by others, those who have adequate self-efficacy tend to cope more effectively; they remain calmer, experience fewer negative emotions, and evidence more positive coping strategies. Therefore, healthcare staff should focus more on relevant positive psychological factors when stigma impacts oral cancer patients' recovery, to improve their prognosis and promote their physical and mental healing.
The present study has several limitations that should be noted. First, because it was a cross-sectional design, no causal inferences can be made about, nor can any long-term effects be claimed for, the associations between stigma and the other study variables in postoperative oral cancer patients. Second, because stigma is a sensitive topic, some patients may have concealed their true mental state, although we assured them that their information would be kept confidential. Finally, the results of this study may closely reflect traditional Chinese culture, and thus any generalizations to other populations should be made with extreme caution. This study was merely an initial step in describing the stigma experienced by postoperative oral cancer patients, and therefore larger, and longitudinal, studies should be conducted in future to provide more in-depth findings.
Despite these limitations, our findings have several clinical implications. First, medical staffs should regularly assess stigma in postoperative oral cancer patients and pay more attention to those patients who have low educational levels, low income, and unstable work. Second, medical staffs should provide timely knowledge about the disease and treatment, and help patients cope with their condition in a positive way to alleviate their stigma. Third, through publicity to increase social awareness of oral cancer to encourage society to accept patients and to reduce the source of patient stigma. In addition, medical staffs should improve the assessment of self-efficacy in postoperative oral cancer patients and focus more on increasing patients’ self-efficacy levels using cognitive training. At the same time, more social support should also be provided to postoperative oral cancer patients.