Table 3 Impact on emotional/psychological well-being concept elicitation—summary of responses and example quotes

Anxious/worry about transmitting CHB to others

“I became cautious when I’m around people. I feel like I don’t want to be responsible for infecting somebody because of whatever comes from my body is going near them or whatever it takes. And it makes me stay away from people sometimes, especially my friends.”

“Because I’m not on medication, I do get worried when I get a cut or any bleeding or anything, because I don’t want to kind of infect any others and I don’t really want to tell people I have it, kind of thing.”

“I’m thinking of, like, families. I don’t want to pass it on to my children. Really, really focused on avoiding that, an absolute possible. So that is quite emotional for me, because I’m thinking. I’m not just affecting myself, I’m affecting my family, my daughter, perhaps. The likelihood they’re going to have it and they’ll going to deal with the same thing, having from birth. Yeah, so that’s quite hard to kind of swallow, really. Yeah.”

Anxious/worry about disease progression/death

“I’m, yeah, constantly worried about what comes next. Am I going to develop something with my liver earlier than expected or soon?”

“I don’t know where that leads me in the future, because I know my uncle who lived in [retracted], he had Hep B and then it damaged his liver in cancer. So they caught that all too late, and he’s passed away about three years ago. So I’m thinking would that affect my future almost?”

“Very nervous. Very nervous and very conscious. And one term I would say, scared, because I remember the first thing the doctor would tell me that I still think about every day is that, soon as she find out and she said, “Oh, that might lead to cancer,” before even telling me, explaining to me. And as soon as she said that, since that day, I’m still thinking, “Oh, I still got the virus. I might get cancer.” And then also stuff. Very conscious.”

Depressed/feeling down/upset

“Emotionally, it can be depressing. Yeah, it can be very, very depressing because you just– you withdraw yourself. You feel like it– just because you’ve been happy, it just became a mental block in your livelihood.”

“Last summer, I went through depression and anxiety. And I think the hepatitis B actually created big problem there. Yeah. I took professional advice and I’m much better now. But I guess my because I have a family. I got a wife and I got a little boy, and I just always back of my mind, it’s just like, “If things happen to me, I don’t what’s going to happen to my family and my wife?” Yeah. As I said beginning of my conversation, it stick to my brain and it doesn’t, but it does affect me emotionally.”

Anxious/worry about disclosing/being exposed

“I have to tell other people because I can’t hide it from work. I have to tell other people and then I’m worried who my boss might tell. I kind of feel like I’m going to be in a kind of bubble, whereby, people who are naïve about it or who doesn’t know anything about it, they might feel like it’s something that I might pass onto to them and then they would be careful in relating with me socially or engaging with me. It makes me kind of feel it makes me reject myself from the outside world a lot, actually, if I’m being honest. I have less friends right now. Not because they don’t want to talk to me or it’s because I reject bring myself a little bit because I don’t want to be forced to tell people what I’m living with or what I’m going through. I don’t want to be forced that, when they see me, if I’m taking my medication every morning, they ask me questions, then I don’t want to have any reason to lie for anyone. As such, I kind of move back from friends.”

Annoyed/frustrated/irritable/angry

“Frustrated. Very frustrated. Angry as well because we don’t know where it comes from. There’s a history of it in the family. My mother has it and she advanced to liver cancer. And my younger sister she has less severe condition than I. I don’t think she has chronic. I have two other siblings preferably okay. So it’s just that frustration not knowing where it came from and my mother doesn’t know either. I think the whole family went for a check in our teens and a diagnosis was picked up then but she– the parents didn’t do anything about it. So, neglectful and a bit angry that my– I moved onto developing chronic when it could have been prevented or contained.”

Stress

“I was having ups and downs about it, and it gave me a lot of stressed nights because I wasn’t too sure where I am and how I’m going to get through it.”

Impact on identity

“Actually, it makes me an extra cautious person because it makes me feel ashamed, to be honest. And ashamed in the fact that I think it comes down to my culture and my history because I am this kind of person. I’m a born [redacted] and, in my family, we’re extremely religious. And as such, I query myself how and where I could have come across. I understand it could be through sexual intercourse and those. I am one of I am extremely careful when it comes to that. Another is maybe blood transfusion, which I never had one and I never give blood before or anything, so I know that. And I never inject myself with anything or such. It made me worried of where might have contracted it over the course of time.”

Low self-esteem/confidence

Interviewer: What do you think your life would be like if you didn’t have Hepatitis B?

“Just I’d feel freer. I’d be much more socially confident, especially in terms of partners. I’ve kind of resigned to the fact that I won’t find anybody. I don’t try either but yeah definitely I’d feel more confidence, more sociable as well.”

Feel guilty about the impact on others

Interviewer: Can you tell me how it’s affected you being around others?

“I feel guilty because they don’t know, but I’m also scared of telling them because of the reception that I may get back from it.”

Suicidal thoughts

“It kind of made me– to be honest, I just didn’t want to be here, like, on this planet at all. I just felt so low to myself and– yeah…It just made me want to give up on life in general.”