Lung Cancer Study Group

LUNG CANCER LEARN MORE ...

  • Recognizing stigma

    The stigma experienced by lung cancer patients is undeniable, but it is so deeply rooted in the history of the disease that it may not even be recognized as such, by most people. In its essence, a stigma is born out of a negative perception associated with a certain behavior and, in this case, it exists due to the strong link between the disease and smoking.

    The stigma in lung cancer manifests itself in two ways: on the one hand, there is the public stigma and, on the other hand, the stigma inflicted by the patient himself or “self-stigma”. The public stigma translates into the widespread belief that lung cancer patients have a disease that they have caused themselves by smoking. It can be demonstrated by anyone, from strangers, friends, family members or even health professionals, who at some point, think, say or do things that judge and blame the lung cancer patient, making him feel that he deserves to have the disease . Self-stigma, on the other hand, results from the internalization by the patient of negative stereotypes, which translates into feelings of shame, guilt and self-recrimination. For most, this guilt adds a great emotional burden to an already overwhelming situation.

    In a research by the Global Lung Cancer Coalition that surveyed more than 16,000 people in 16 countries, the investigators found that up to 29% of people admitted to feel less sympathy for lung cancer patients compared to those suffering from other types of cancer, due to its association with tobacco. This facet of stigma of discouraging compassion, is one of the most relevant aspects of this problem.

    The origin of stigma

    Although the relationship between smoking and lung cancer is unquestionable, this association has resulted in a one-dimensional view of the disease in public opinion. The vast majority of anti-smoking campaigns generalize the false belief that smoking is the only cause of lung cancer, and the misconception that non-smokers are free from risk. Although the aim of the media is to inhibit people from smoking, an unforeseen consequence is the stigmatization of this group.

    It is necessary to point out that many people who today live with lung cancer are those who started smoking at a time when tobacco was not only accepted, but also considered a factor of social promotion, and the long-term harmful effects of this habit were not known. Many have quit smoking in the meantime, sometimes several decades ago, but despite this, they are the target of the same blaming messages, instead of receiving the deserved praise for having overcome their addiction. The fact that great smokers often have visible physical marks of their habit that are seen as "disgusting" by most non-smokers (such as yellow teeth or finger burns, eg) makes it even easier to materialize the stigma. But ultimately, the problem exists because the public continues to view smoking as a bad habit, and not as the serious addiction it is.

    In fact, the stigma is so deeply rooted that even patients who have never smoked tend to be held responsible. When they share their diagnosis, these patients often hear the question "But did you smoke?" Instead of the usual comfort messages that are addressed to any other cancer patient. This results in a particularly strong feeling of hurt, injustice and anger in this group.

    Consequences

    Stigma adversely affects not only the patient but also his family and friends, conditioning the way they deal with the disease and communicate with each other and with society. It is well documented that stigma is associated with negative psychosocial and medical outcomes:

    • Loss of self-confidence, guilt and shame

    • Fear of disclosing one´s diagnosis

    • Avoidance of social situations and isolation

    • Increased stress, difficulty cooping, depression

    • Delay in seeking medical care

    • Less adherence or refusal of treatment and potential sources of support

    • Poorer quality of life

    • Shorter survival

    • Threats to economic opportunities and financial problems

    Despite being by far the deadliest, lung cancer is also one of the least funded.

    Compared to others such as breast and prostate cancer, lung cancer has received much less investment, which is undoubtedly linked to the strong stigma surrounding the disease. This trend begins to show signs of change, with the recent appearance of innovative and profitable therapies for the industry. But to move forward in a truly positive way, it is necessary to end the stigma surrounding lung cancer.

    Anti-stigma strategies

    Education is the key to changing public perception and reducing this unfounded stigma. It is necessary to inform, providing precise facts:

    • Smoking is not a bad habit. In fact, smoking is one of the most difficult addictions to overcome.

    • Genetic factors can predispose certain individuals to lung cancer, or protect them.

    • Other factors can cause the disease, including exposure to radon, asbestos, secondhand smoke or environmental pollution.

    • Up to 20% of lung cancer patients have never smoked.

    Through communication, education and strategic campaigns, public opinion can be shaped. There are two key messages that have to be passed on:

    1. Anyone can get lung cancer.. In addition to tobacco, there are many mechanisms for developing the disease.

    2. Nobody deserves to have lung cancer. Nem mesmo os fumadores, que sofrem de uma dependência difícil de vencer. Em vez de culpar o fumador, a sociedade tem que se unir contra a indústria tabaqueira por vender um produto altamente viciante.

    Sensitizing the public to the psychosocial suffering that stigma imposes on patients and their caregivers is also an important step in encouraging a change in mentalities and compassion.

    Scientific communities have to work along with the media to lead them to create balanced campaigns, which educate about risks, without fostering stigma.

    Since there has been an increase in cases in non-smokers in recent years, it is also necessary to reorient messages in the media to align with this demographic change. Focusing lung cancer campaigns on survivors' stories is another way to change the negative burden associated with this diagnosis.

    Finally, efforts must be made to support patients. Education is essential to end self-inflicted stigma. They should be encouraged to be honest about how stigma makes them feel, to share their experience, and to seek support from other patients, family, friends and health professionals. Also, it can never be overemphasized the role of smoking cessation, which among other benefits, can improve the self-esteem of patients living with lung cancer.

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