Table 2 Concepts that emerged when participants were asked about their experience of living with CHB

Emotional impacts

Anxiety/fear

Reasons for feeling fearful included:

• Transmission to family and friends

• Disease progression, including liver function and cirrhosis

• Treatment efficacy

• Impact on work

• Impact on relationships/fear of rejection

• “The biggest concern is its transmission, as the disease is contagious.” (CN-09)

• “Socially, I do think about being very cautious not to possibly spread this to my kids or anything when I’m using utensils around the house…” (US-14)

• “I worry a lot about my liver. That it gets damaged…I’m quite young and I worry how many years I can live with it…I’m afraid of dying early.” (DE-09)

• “I’m also worried about my condition getting worse. Because this disease is incurable currently, I just hope it isn’t getting worse.” (CN-10)

• “I am afraid for my permanent job, how bad the illness is, whether I will get well again, whether the pills will help.” (DE-02)

• “It’s like if…I had a time bomb in my pocket. I know I have it, but it’s unpredictable, so I do not know what could happen to me in the future or how it could affect my family, my children, my marriage.” (IT-11)

• “ …some companies now do not require employees to take medical examination for hepatitis B, these companies may still require them to do so privately. If they are found to have hepatitis B, they may be fired…” I: And are you worried? “Of course.” (CN-10)

• “Yes, definitely, especially in relation to my love and sexual life. Beyond precautions, because I don’t want to get pregnant or similar, I almost avoid being touched because I’m scared to be contagious, so I find it difficult, very complicated.” (IT-04)

• “My approach and self-confidence when it comes to forming relationships, may that be romantic, or friendship, or business related…I don’t know if it’s subconscious at this point because I’ve done a lot of work over the years to try to get peace with my condition. But sometimes it does show up in weird ways with my behavior where I’ll sort of sabotage myself before getting to a point where I have to take a risk or something like that just for fear of rejection, mostly I think.” (US-12)

Shame/embarrassment about disclosing condition

• Includes shame related to inability to donate blood

• “At the beginning I felt ashamed of telling people because I don’t really know when I got infected and how. And then I keep wondering about it. And people are asking.” (DE-09)

• “For example, sometimes we see blood donation vehicles in the neighborhood and my friend asked when was the last time I donated blood? I did not know what to say.” (CN-02)

Low self-esteem

• “My self-esteem I think is a little bit down.” (US-13)

Need for secrecy/concealment

• “I never talk about my symptoms with my friends. So when I’m tired I blame other things for it.” I: So they don’t know about your illness? “No, definitely not.” (DE-11)

• “Well, no one knows about it, only my office colleagues know about it. Only my family knows, but no one else. My partner doesn’t know. And that is it. It has always been something I didn’t want to share or talk about. You are very careful in certain situation but you don’t tell it. You can’t tell your friends, unless it is a real and close friend. You don’t talk about this topic, never.” (IT-01)

• “In terms of social life, because basically I won’t share or discuss my disease with others, it’s a private thing. If you don’t tell, nobody knows that you have hepatitis B.” (CN-01)

• “…it’s something that I’m not very comfortable with sharing with others.” (US-14)

Feeling overwhelmed, difficulty accepting diagnosis, sadness/depression, anger, betrayal, denial, not feeling human/normal

• “I was lost when I got diagnosed. I was overwhelmed.” (CN-03)

• “Sometimes it can be such an emotional burden. I don’t consider myself a normal person anymore.” (CN-02)

• “[The] month that it happened and I was a very upset, disturbed, and bothered person. I was irritable. I was angry.” (US-11)

• “I felt betrayed. I felt abused by this guy that I had dated.” (US-11)

• “I think there was a bit of denial of the beginning.” (US-15)

• “It’s affected me emotionally by making me not feel human, making me not feel like I can do everything I want to do. It makes me feel like a lost soul. It makes me feel like just like I got this burden on me that I just can’t get rid of, and no matter what I do, I can’t shake it. It makes me feel kind of useless at times.” (US-10)

Lifestyle limitations

Reduced/no exercise

• “Well, my lifestyle has changed, for sure, since I feel tired more frequently, I had to give up on a lot of sports.” (IT-12)

• “I can’t do any heavy house chores.” (CN-06)

Dietary limitations and reduced/no alcohol intake

• “…The impact it has on living habits is that I need to pay more attention to my diet now.” (CN-04)

• “When I went out with friends and everyone was drinking alcohol and I was not allowed to. And I felt as an outsider.” (DE-05)

• “I have to avoid alcohol. I don’t mean to get drunk, but a glass of wine would be nice at dinner. Fatty foods as well. I was told off by all the specialists.” (IT-07)

• “I never really drank much alcohol and now I won’t drink any because I always worry about the liver cirrhosis.” (US-03)

Increased hospital visits, frequent treatment, different attitudes from medical staff

• “I have to go for blood tests more periodically than the average person.” (US-03)

• “The impact on life is that I have to take medicines on time every day.” (CN-01)

• “The medications must be taken on an empty stomach or two hours after mealtime. Therefore, I cannot have a nightlife. I like to take my medications at nine o’clock and finish my meal at seven o’clock. It affects my social life.” (CN-07)

• “Yes, I always state it [hepatitis B status]; I had an appointment in the morning and once they saw on the form that I have hepatitis B, I was taken as the last patient.” (DE-07)

Unable to share utensils

• “For example, if I have drunk from a glass or a bottle, I make sure that nobody else drinks from it.” (DE-01)

• “I try not to eat the hot pot communally and share their dishes with others. I usually eat on individual dishes and don’t share plates and utensils.” (JP-12)

• “I would use independent tableware, and my dishes were also placed on a separate plate. I use a toilet by myself. My clothes or towels, including my cups, toothbrush, are all kept separately. I wanted to do it myself because there is a child at home. I am very worried that it will be transmitted to my child.” (CN-11)

• “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)

Impact on work

• Taking time off work

• Increased fatigue impacts performance

• Some jobs not/no longer possible

• “I get tired more easily. Fatigue is always there, so it has influenced my performance.” (IT-01)

• “…right after my diagnosis. I did not go to work for half a year. Treatments took some time. Also because my numbers were too high so I couldn’t go back to work.” (CN-06)

• “I have to see a doctor every other month or once every three months. I have to have lab tests all the time. I have to be on medication all the time, every day, so those all kind of affect my work…” (US-05)

• “I found it hard to focus at work.” (US-12)

Social life impacts

Isolation, reduced social interaction, reduced social life

• Includes inability to stay up late due to fatigue

• “I think that’s always been the toughest part of it, is the emotional aspect of feeling so isolated.” (US-15)

• “When I went out with friends and everyone was drinking alcohol and I was not allowed to. And I felt as an outsider.” (DE-05)

• “It has affected my social life. For example, at the gatherings with my fellow students. Things can be especially difficult if there is food or drinking involved. It depends on the situation, but I generally try to avoid attending…” (CN-02)

• “I can’t…stay up late. I have to stick to a routine to keep the disease under control.” (CN-06)

• “I lost many ‘friends.’” (IT-02)

Social commitments/family relationships

• “When I have something planned, then suddenly I can’t do it anymore.” (DE-02)

• “And they [relatives] may tell their children not to play with me…And tell the children not to get close to me…” I: How did you feel when you heard that? “I wanted to leave. I’d better to be alone.” (CN-09)

• “He [father] just decided to label me as someone who is become a little bit of an outsider from his perspective, right, not a full member of the family, not full son. So these things running through my mind all the time.” (US-02)

• “If you have like family or relatives or friends, and if you were trying to get close to their children, you feel like you don’t want to make the parents feel bad that you might some way give the virus to their kid, so that kind of puts us in a stigma that we shouldn’t be getting too close to other people’s children.” (US-05)

Meeting new people/difficulty maintaining friendships

• “First, I withdrew a bit, that was of course a restriction, and then regarding food and eating. As to partner choice, at some point you like to consider having a new partner and I blocked completely at first. For the first three or four years there was nothing. You don’t want to transmit anything to the new partner, do you? So, I let it all develop slowly and when I then explained this, there was not really a lot of understanding.” (DE-04)

• “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. I guess the misinformation, how you get it, sometimes people don’t understand and they think that by just shaking your hand or just by maybe sharing or drinking from the same glass of water they’ll get it. So there are people that have just walked away from my life because of that.” (US-13)

Difficulties with intimacy and sexual relationships/dating

• “In a partnership it is difficult to explain this to the other person. You don’t say that in the beginning. If the woman can’t handle it, she may never want to see me again. It’s not always easy.” (DE-06)

• “I have less sex.” (CN-06)

• “Yes. My relationships do suffer because of it [hepatitis B].” (CN-07)

• “Socially it’s affected me in a way that I’m not dating. Before I was open to dating and I was putting myself out there and I was on a dating site. I’m not doing that because I still don’t feel that I am as comfortable as I want to be.” (US-11)