By delving into the nature of stigma in China and offering an in-depth, conceptually grounded description of the drivers and manifestations of stigma, we have gone beyond prior research that has primarily pointed to its existence. To this end, we attempted to build a conceptual frame of stigma through eliciting patients’ experiences of stigma. The conceptual framework includes the following three parts: drivers, manifestations, and coping strategies.
We found that shape change and impaired physical function were important drivers of stigma, which was consistent with previous findings. Many patients were prone to stigma owing to body image loss, reduced self-esteem, and a sense of shame, and postoperative oral cancer patients were especially susceptible because of the facial deformity and dysfunction they experience[4, 22]. Importantly, facial disfigurement was consistently associated with the development of stigma and the perception of stigma. In addition, economic pressure is also one of the drivers of patients’ stigma. As part of one’s personal social resources, a higher income levels can greatly reduce the psychological and financial stress caused by cancer diagnosis and treatment.
The treatment of cancer led to a decline in the patient’s ability to take care of themselves and work, and they needed the care of their families and even society. At the same time, excessive concern from relatives and friends of postoperative oral cancer patients damaged the patient’s self-esteem, which affected their self-perception and evaluation. We found that stigma also came from medical staff, which was different from previous studies. Medical staff had a negative attitude toward predicting and responding to patients’ diseases. In addition, due to the shortage of medical resources, many patients were unable to repeat the examination on time.The loss of identity in health services was the most frightening, as outside respect in society was an important factor in their exposure to the world and their re-engagement.
We also found that social stereotypes play an important role in driving stigma. In traditional Chinese culture, cancer was considered karma in a past life; suffering from cancer was equivalent to being sentenced to death. The public believed that the emergence of cancer was not only a punishment in the present life, but also a repayment of debts in the previous life, which became “causal reincarnation”. The public’s incorrect cognition caused stigma in patients. Meanwhile, through in-depth interviews with patients, we found that many people and even the patients themselves sometimes believed that oral cancer is contagious. Due to the influence of public opinion, the cognitive tendency of patients was more serious. We can spread disease-related knowledge through the government propaganda or the use of the network and correct the public’s misunderstanding of postoperative oral cancer patients.
That cancer stigma was present and manifests in many forms emerged across postoperative oral cancer patients data sets. Patients consistently described acts of social and physical isolation. One of our most important findings was that patients live with mask, they wanted to hide their true feelings, which was different from previous studies. Communications with others were abandoned as a result of their anxieties and worries. We also found that feeling of guilt and inferiority were manifestations of stigma. Feelings of guilt, shame and blame, depression, low self-esteem, and poor quality of life resulting from oral cancer stigma have been described in previous studies. Patients’ stigma made patients doubt their own behavioral ability and led to a decline in self-efficacy. The patients’ experience of discrimination mainly included job loss, verbal abuse, and marriage prospects reduced. It suggests that we can pay more attention to the subjective feelings of patients and implement effective anti-stigma interventions.
The negative emotions caused by the disease in cancer patients led to psychological and social dysfunctions, which can affect the body’s immunity and aggravate the deterioration of the disease. As a component of individual tools, coping strategies represented efforts made by a patient to deal with distress. We found that postoperative oral cancer patients adopt positive coping strategies to face stigma, such as self-encouragement and diversion. Furthermore, a lower level of stigma was confirmed to be associated with lower rates of alcohol and cigarette abuse, more frequent exercise and better nutrition. We found that some patients took traditional Chinese medicine to treat their diseases. The inhibitory effect of traditional Chinese medicine on tumors was reflected at multiple levels and through multiple pathways, the efficacy, safety and mechanism of action need more in-depth experimental research. Different strategies adopted by patients would result in diverse outcomes.Therefore, it is important for healthcare professionals to help them develop effective coping strategies to reduce the negative consequences of stigma.
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. We found that family and friends were the major providers of support for postoperative oral cancer patients. Some patients did not want to bother others, and hoped to maintain harmony. Medical staff should encourage patients to seek help voluntarily. We also found that developing collaborative and supportive relationships with close persons and the medical staff had a vital role in coping and adjustment. Medical staff played a significant role in participants’ awareness of psychosocial support services. Many acknowledged that conversations initiated by medical staff were essential for their ability to find services relevant to their psychosocial needs. Therefore, more social support from the community, family and friends is essential to reduce stigma.
4.1 Study limitations
There were several limitations of the study. The sample size may not be representative of larger populations because the participants came from a single geographical area with similar ethnicity and culture. In addition, the study reports on the self-reported experiences of participants, which were subject to recall bias.
4.2 Clinical Implication
Despite these limitations, our findings have several clinical implications. First, These findings suggest that there were various stigma-driven factors in postoperative oral cancer patients, which can lead to the imbalance of psychosocial function and seriously affect the quality of life of patients. Second, medical staffs should help patients to actively seek social support and cope with the disease, reduce the stigma of patients. Third, through publicity to increase social awareness of oral cancer to encourage society to accept patients and to reduce the driver of patient stigma.