Sources of stigma
By organizing and analyzing the interview materials, the following four sources of Lung Cancer Stigma (LCS) were derived from the experiences of the participants: smoking, decreased ability to work, difficulties caring for self and family, and damage to self-image.
Smoking increases the risk of lung cancer and is one of the most specific risk factors identified so far. Therefore, regardless of whether an individual’s particular lung cancer is caused by smoking, most people will believe that smoking is the cause. Cognitive psychology suggests that this leads to others having a poor impression of lung cancer patients. In addition, the participants in this study reported feeling extremely regretful, angry, or inferior as a result of ignoring their own health, refusing to give up smoking, or not paying attention to their health for a long period before developing lung cancer. These feelings often co-existed, causing a large amount of psychological interference and leading to decreased will to live, which is consistent with the findings of Bell and colleagues (Bell et al. 2010).
In terms of decreased ability to work, although the participants reported receiving care from leaders and colleagues in the workplace, they felt that it was difficult to deliver on serious commitments, or that leaders would not delegate important, complicated, and particularly long-term work to them, resulting in a negative impact on their careers. This stigma of not being able to do their job can delay or prevent their return to work for a long time after their illness is treated.
In terms of the difficulties caring for self and family, many patients with lung cancer are middle-aged and are the mainstay of the family when healthy, supporting the elderly, raising children, and supplying money for family spending. With a lung cancer diagnosis, middle-aged patients can lose their ability to supply money for the family, and may become unable to take care of their children. Additionally, other family members have to spend a great deal of time caring for the patient. In line with this, patients might feel guilt toward their parents, spouses, and children, especially when accepting care from their families is perceived negatively along with limited resources due to paying high medical expenses. Feelings of shame can mean that some people are disappointed in themselves, which might even lead to despair and suicide. There have been a reports in recent years indicating that some patients with cancer commit suicide, based on the belief that, although they will not be able to continue to support their family, their death will provide some release from exhaustion and constraint for relatives, and that the family’s assets will be preserved (Villano et al. 2015).
As far as damage to self-image is concerned, chemotherapy and other lung cancer treatments can lead to hair loss and a deterioration in general appearance and manner, resulting in a sense of loss and self-abasement. Many patients with lung cancer have a cough and sputum production resulting in not only physical and psychological pain for patients, but also in feelings of inferiority. Patients reported feeling that they’re “unclean” and they worry that they might be further loathed, excluded, alienated, or discriminated against by others. Debilitation following treatment often results in patients needing help with eating and going to the toilet. Many patients, especially those who value neatness and propriety, will thus feel a tremendous stigma with poor-self-image. Social isolation may result from avoidance and fear. The psychological pressure of lung cancer stigma can inhibit rebuilding confidence and maintaining a good social mentality following treatment.
Experiences of stigma
Patients with lung cancer can experience perceived discrimination, social isolation and exclusion from their colleagues, superiors, and even from friends. These experiences may be based on ignorance of cancer itself such as concerns that the disease is contagious. Additionally, people associate cancer with death. Patients with lung cancer can thus be labeled as “a source of infection” and “death”. At the same time, patients perceive discrimination and rejection with resulting negative emotional reactions. The participants in the current study used expressions such as guilt, self-accusation, shame, anxiety, and self-abasement to describe their experiences. These negative emotional experiences can have long-term consequences for patients, impairing their self-confidence, lowering their self-esteem, and leading to pessimism about the future (Chambers et al. 2012).
According to the theory of stress response (Lazarus 1993), we can divide LCS coping strategies into three categories. Stigma, as a negative psychological experience, involves three categories of coping responses: changing perceptions (emotion-focused coping) or changing behaviors (problem-focused coping), or a combination (mixed-focus coping). In order to avoid being labeled as a source of infection, or being rejected by others, patients with lung cancer may adopt mixed coping strategies to protect themselves. Link and colleagues (Link et al. 1989) historical work described how labeling can lead to negative outcomes and described several mixed-coping strategies that patients may adopt: (1) keeping the disease secret; (2) limiting participation in social activities; (3) trying to educate others; and (4) taking a stand against prejudice and discrimination. The participants in the current study documented coping strategies similar to those suggested by Link et al. (1989), thus continuing to support this historical perspective. Current study participants reduced emotional stress and psychological pressures by concealing the fact of sickness and limiting social activities, seeking information to educate others, and disclosing dissatisfaction with discrimination. Additionally they used strategies to reconstruct their self-image by being “cooperative” and adhering to treatment. These mixed-focus coping styles allowed them to change (cope with) their experience of stigma. Nevertheless, concealing the fact of sickness and reducing social activities can have conflicting effects. While these coping strategies may decrease or eliminate avoidance or discrimination from others, there are problems. In order to conceal the condition, the patient has to receive treatment and care in secret, which interrupts their daily routine and can interfere with receiving timely treatment. In addition, a patient who conceals the fact of sickness may not receive help from others. As a result, they may not obtain the rest necessary for coping with their illness, and can also face major psychological pressures and challenges. These patients can, in the long term, feel more lonely, afraid, and anxious than if they had disclosed their illness; consequently, they may experience increased helplessness and hopelessness (Chapple et al. 2004).
Suggestions for clinical nursing
To strengthen education of the public
Prejudice and discrimination from the public against patients with lung cancer result from a lack of knowledge about the disease and misunderstanding of multiple causes of lung cancer. People may tend to believe that the disease is contagious and a sign of death. Medical staff should initiate public information campaigns by implementing lung cancer education programs in communities and schools. For example, information can be found online at http://www.lung.org/assets/documents/research/addressing-the-stigma-of-lung-cancer.pdf and http://www.lungcancercanada.ca/Lung-Cancer/Stigma.aspx. Nursing staff could also use mass media such as television, radio, and the internet; print media such as books and leaflets; and audiovisual tools such as films, and other media to provide accurate and factual information specifically about lung cancer to reduce the stigma. Such measures will help the public to acquire knowledge, correct misunderstandings about lung cancer, and improve the social environment for patients with lung cancer.
Reduce feelings of stigma by using cognitive therapy
Cognitive therapy is effective in treating anxiety, depression, and self-denial (Li 2011). Medical staff can apply cognitive therapy to help patients with lung cancer to identify and modify negative knowledge and beliefs, develop a positive attitude toward the disease, and gradually adjust to normal life. Nursing staff should first actively guide and educate patients to acknowledge and accept themselves. Next, nursing staff can help patients with lung cancer to enhance their self-confidence and self-esteem by identifying their inner strengths and potential in combating the disease, as well as positive events and experiences in their lives. Nurses can help patients to develop interpersonal skills and adapt ability, improved communication skills, and build resilience and an approach to disclose dissatisfaction in dealing with stigma.
Enhance social support
Lack of social support as a negative impact on the prognosis of disease, and serious effects on physical and mental health. Medical staff should help patients to establish effective social support networks, build a positive interpersonal communication environment, and improve their degree of social support. Communicating with patients can be an effective measure to reduce the experience of stigma (Li 2011). By supportive communication with patients, and awareness of their psychological state, feelings of fear and discrimination can be decreased. This can also help patients return to their families and workplaces, and be part of their community. Many resources can be found and used by nurses to educate and advocate for patients. For example, https://www.iaslc.org/patient-resources/advocacy-partners is a website that could be provided to government agencies, social groups, and community agencies to help the public develop a positive and caring attitude toward patients with lung cancer. It remains critical to help people to quit smoking, however, clinical and educational approaches should be offered with care so as not to increase the stigma experienced by patients with lung cancer.
This study has a number of limitations. The age range of the participants is 29–80 years, which is atypical for lung cancer. A younger individual with lung cancer may experience stigma very differently than an older individual and this is an atypical wide range in age of the sample. This may limit the generalizability of our results. Second, all patients who participated in the research were recruited from the same hospital in China. It might be that lung cancer patients who come from other treatment centers have different experiences. Third, the data were collected with participants in hospitals; there is a need for longitudinal research into whether a lung cancer patient’s experiences will change over longer periods of time after hospital discharge, as well as studies of “coping with stigma” with lung cancer patients in the outpatient setting.
Implications for nursing and health policy
As point-of-care providers, staff nurses are well positioned to develop effective interventions to help patients deal with stigma and to accomplish the goal of providing holistic care.