Table 3 Selected comments reflecting participants’ understanding and experiences of CHB-related stigma

Understanding of stigma

Participants’ definitions of “stigma”

• “…a preconceived myth or judgment that people identify with it.” (US-11)

• “…it’s being put in a certain category that’s not looked at in a positive light.” (US-14)

• “Prejudices. You get pigeonholed.” (DE-03)

• “Stigma is something where a person is labeled, judged by others and where the person is also somewhat excluded.” (DE-08)

• “It means to ‘label’ something.” (IT-07)

• “…you feel uncomfortable and ashamed to see people because someone is judging and commenting on you.” (CN-12)

• “[People] may feel that others are isolating them in various ways because the disease is a contagious disease.” (CN-01)

Impacts of stigma

Experienced judgment/prejudice

• “People who I don’t know so well. People I only greet on the street. And suddenly they keep their distance. Or warn others.” (DE-10)

• “I felt I was being judged, as if catching hepatitis was my fault because I did something, I felt as if I was someone’s ‘plague spreader.’” (IT-03)

• “When someone thinks about sexually transmitted diseases, they always see you as if you were the dirtiest, weirdest person in the world…” (IT-04)

• “I have felt badly because other people judge me without knowing the reason why I have contracted hepatitis B.” (IT-02)

• “The doctor said, ‘You are a hepatitis B carrier! You could cause hospital infections!’” (JP-02)

Experienced relationship problems (negative experiences with partners or family and friends)

• “Well, there’s always that rejection from certain people sometimes. I have talked to someone and I kind of lost a few friendships because of this, because I thought I was just being open.” (US-13)

• “I had a date. And there was a point when I had to tell him and it was over very quickly because he judged me and stigmatized me. He thought I was ill and contagious. He completely cut off contact with me.” (DE-09)

• “People know to keep a distance away from you. They avoid you no matter what. I have fewer friends now.” (CN-06)

Experienced lack of awareness/understanding from others

• “People in [the US] generally don’t really know even the difference between the different types. And the most common one talked about here is hepatitis C, which is commonly associated with IV drug use, unsafe sex practices, other unsafe behaviors, which in turn cause a lot of people to judge other people based on those preconceived notions.” (US-12)

• “It’s not contagious through talking, or food. But people, obviously they don’t quite understand.” (US-06)

• “I had to explain what it is first. When I have a partner, I have to explain.” (DE-03)

• “No matter what type of the hepatitis is, people are scared of it, they are scared of being infected. Many people actually don’t know exactly the transmission mode of hepatitis, so they’re so scared of it. They will keep away from you if they know you have it.” (CN-01)

• “Many people have misunderstandings about hepatitis B, so they will definitely have certain precaution or discrimination.” (CN-04)

Avoidance by others

• “He went as far as not wanting to sit at the same dining table with me…I noticed some weird behavior on my dad’s part.” (US-02)

• “People who were good friends before are avoiding me now. They would never tell me that they are avoiding me but they don’t have time for me anymore. We don’t meet anymore.” (DE-10)

• “I noticed that everyone held back a bit, and me too, of course and so we were not so close any longer.” (DE-04)

Negative experiences at work

• “…everyone [in the work team] held back a bit, and me too, of course and so we were not so close any longer.” (DE-04)

• “During the physical exam, I found out there was another coworker who had the same disease. When I found out that we had the same hepatitis B condition, I started to see him differently. When I read his report, I could only imagine what other people would have thought when they read mine. I turned in my resignation after that and left the job. So, I think job hunting has been a very challenging thing.” (CN-02)

Exclusion

• “Prior to disclosing [my hepatitis B status], the person I was talking with was very excited to have me and was ready to accept me into their [college martial arts] program. But then once I revealed my status, I got a follow-up email several days later saying that there was just not going to be a spot.” (US-06)

• “I invited friends for a BBQ but they didn’t have time but later I heard that they did a BBQ themselves but without me [I felt like] an outsider. Hurt. And then I don’t want to go there the next time because I feel unwanted.” (DE-10)

• “People shut the door on you only because you had hepatitis B.” (CN-05)

Others not wanting to share food/drink or utensils, self-restriction around sharing meals

• “But I do feel, I remember one time that I went to a park and I meet somebody, it’s a girl, and we chat awhile…and she’s a little bit hungry and I offer her an apple. But she was really happy, and when…there was a phone call, in that conversation I must’ve mentioned my hep B with my family. And she overheard it and she stopped eating that apple.” (US-06)

• “Some of my relatives, middle-aged and elderly women, are generally mean-minded. When I went to their house for dinner, they will prepare a set of cutleries for me, and then said that they are prepared for me. After I used them up, they throw away those cutleries.” (CN-09)

Denied opportunities

• “I was trying to register classes in the college as a registered nurse major, and I tried really hard. And before you get enrolled, you need to provide them the proof of vaccination. And because I just noticed before the registration that I am a carrier, I tried to explain to them because I’m pretty healthy and I don’t have any symptoms…and they show me the instructions on where I can get treatment. And then I get treated, then I get to the vaccinations, but I can show them the proof of vaccination, and they won’t do that. So that’s really bothering, at one point, for me. It changed my career, actually. I really want to be a nurse, but I couldn’t because of this.” (US-06)

• “I did pass multiple interviews and got to the last test. But I was failed because of the medical examination…Since then I only looking for jobs at those companies which don’t require the medical examination.” (CN-10)

Negative experiences at a clinic/hospital

• “Then the doctor might have seen my patient record and knew that I have hepatitis B. I accidentally touched some things, and I didn’t sit on the operating table as required by him. Then there was a nurse. She said, ‘You have hepatitis B, you don’t sit around, don’t transmit it to others.’ At that time, I felt very ashamed. She was so brutally candid and talked to me like that, I was shocked.” (CN-11)

Reduced social activities

• “…my usual social activities have been greatly reduced. Now I usually try to avoid going out to eat with others. I don’t want to join such activities.” (CN-09)