Table 3 Sources of stigma

1.1 Smoking

Cigarette smoking represents a primary risk factor for lung cancer. More than 80 % of diagnoses occur in current or former smokers. The participants often expressed regret at having smoked

Participant 2: “I started smoking at age 16. So far, I have smoked for 40 years. Now I have the disease and it feels that I am being punished! I have spent a lot of money in treating the disease, I feel very guilty. I think that if I had not smoked at that time, it would have been better”

Participant 3: “I have smoked for 40 years, and now I have the disease. It’s a punishment. If only I had not smoked at the beginning. I feel very guilty and much remorse.” Although approximately 80–90 % of all lung cancer cases are smoking related, some patients do not have a history of smoking (Gómez et al. 2007). However, participants reported that people around them believed that these patients had lung cancer because of smoking

Participant 11: “A few good friends came to see me last week. They told me lung cancer is related to smoking. They act as though it is my fault that I have lung cancer. However, I have never smoked. I felt quite upset”

1.2 Decreased ability to work

Due to lung cancer, patients may find they have reduced physical abilities, meaning they are unable to work as hard as they did previously

Participant 15: “The company had planned to give me a promotion to general manager. The board of directors heard from someone that I got lung cancer, so my boss didn’t promote me. Ah, that’s because of the disease…”

1.3 Difficulties caring for self and family

The participants reported being very weak after receiving treatment for their disease and needing care from their families after hospital discharge. Not only were they unable to care for themselves, but they were also unable to care for their families as they had previously. As a result, the participants reported developing feelings of shame and remorse

Participant 1: “It doesn’t matter how I have suffered. I am afraid that the disease will cause problems for my grandson. I haven’t been able to take care of my grandson”

Participant 8: “Now I cannot afford any help for my children. Instead, I trouble them a lot…I felt even guiltier”

Participant 9: “I cannot even help my children”

1.4 Damage to self-image

Lung cancer itself and chemotherapy for treatment with related side-effects can cause hair loss, weakness, and disfigurement, leading to a negative self-image. These changes were identified as a cause of stigma

Participant 3: “After my first chemotherapy treatment, a lot of hair fell out. When I was out shopping, others asked me ‘What’s wrong with your hair?’ I felt they whispered about me even when I didn’t notice them talking”

Participant 4: “My hair has fallen out; my legs were probably invaded by metastatic disease. Now I walk with a limp, not a good image”

Participant 9: “Now my hair has fallen out and I always vomit because of chemotherapy. Now I have a poor quality of life and I have no dignity”

Participant 14: “I have a bad cough. As soon as I cough, my family will frown. So I usually try to cough as little as I can possibly help”

Participant 17: “The cancer cells spread to the breast, so the side of the breast was removed; I feel so ashamed”