Major themes
Four major themes were inductively identified from participant interviews: (1) knowledge and understanding of hepatitis B, (2) treatment pathways, (3) accessing hepatitis B related care, and (4) disclosing status to friends.
Theme 1: Knowledge and understanding of hepatitis B
The majority of participants reported knowing how transmission of hepatitis B occurred. Most participants identified contact with blood as a means of transmission, while a few were unsure whether transmission could occur by contact with blood. Most of the interviewed women were aware of mother to child transmission, with some being aware of mother to child transmission before their pregnancy. One participant expressed that, while she did not know anything at all about hepatitis B, the one thing she wanted to know was how she came to acquire it.
Some participants expressed confusion over whether hepatitis B transmission could occur through sharing of food or cutlery, with one participant expressing confidence in her knowledge of this. A few women noted that while they had previously thought transmission could occur through sharing of food or cutlery, accurate information about transmission had been provided by her specialist during pregnancy. Provision of this information made a substantial change in one woman’s perception of herself:
Before knowing that [hepatitis B could not be transmitted through sharing food] I just felt very diseased and very gross. I didn’t want to share anything with anyone because I didn’t want to give it to anyone, but after knowing it makes you more at ease.
(Participant 6)
Most of the interviewed women reported searching for hepatitis B information online. Wanting to know more about hepatitis B than what was explained by doctors was the main motivator for online searches. However, women expressed uncertainty over the credibility of information they found online and reported asking doctors for confirmation or advice. As is explained by a woman who was unsure if transmission could occur via sharing of food:
I tried to see if it could transfer from people to people by sharing drinks and food, but I couldn’t find that information… because I didn’t have the right person to talk to, I was still fifty-fifty percent until I saw the doctor here.
(Participant 5)
In contrast, some women claimed that searching for information online was unnecessary as they felt they had received enough information from doctors, while others avoided searching for additional information so as not to increase their concern.
Family was also cited as a source of new information and support, with women saying that their parents provided support even if they did not significantly know about hepatitis B. All women reported being comfortable in speaking to their close family, which they defined as partners, parents, and siblings about hepatitis B. For those who had hepatitis B during their childhood or adolescence, discussion about family support included the role of parents and their experiences earlier in life.
My dad had this disease and according to my childhood in my case, we should drink lots of water … and we should eat healthy food.
(Participant 12)
Some women were concerned about having children, and those with sisters who were also living with hepatitis B and who had children, reported their sisters’ experiences during pregnancy as valuable particularly in relation to transmission.
When we were little, I was thinking “If I have a baby, the baby will carry it on as well.” And at that time, we were young, so I was thinking, “I will never have kids”… But until a few years ago when my sister had a baby and in the hospital in Vietnam… so it gave me hope as well that I want to have a baby.”
(Participant 5)
Theme 2: Treatment pathways
The majority of women interviewed said they knew that hepatitis B treatment was available. All participants expressed wanting to know more about treatment when asked. When discussing treatment, participants often included explanations of lowering viral load or viral levels, which in most cases included mention of a hepatitis B “carrier”.
They [the doctors] said I’m just a carrier in their words—so it’s just a little bit infection it’s not like I literally got it.
(Participant 1)
During discussion of general knowledge of hepatitis B, women expressed uncertainty over their word choice, stating they were unsure if the terms used were ‘correct’ or ‘professional’. Others used words typically found in a biomedical context, particularly when discussing transmission and treatment, such as ‘viral load’, ‘asymptomatic’, ‘natural antibodies’, and ‘antigens’. Participants’ word choice when sharing their hepatitis B knowledge may be a reflection of their main sources of information, in this case, doctors.
Issues related to general health status were raised by participants during discussion of treatment. Participants reported exercise, a healthy diet, and lowering alcohol consumption as key health promoting interventions suggested by doctors, both overseas and in Australia. Discussion of alcohol consumption was linked to concerns of the long-term risk of liver cancer, as explained by one woman:
When I was young, I was drinking a lot. … But later on, when I was thinking, “Well I can’t keep going like this because one day if it turns out [as] cancer”.
(Participant 5)
In some cases, women reported hearing of potential benefits of herbal medicines from their family, while most claimed to be unsure of their efficacy. One woman recounted her brother’s use of turmeric as treatment for hepatitis B:
One of my brothers said, because he is a pharmacist, he told us that the other brother has hepatitis B [and] decided not to go through the medical treatment. … my mum gave like turmeric every day and it was really really helpful and he’s fine now.
(Participant 7)
Theme 3: Accessing hepatitis B care
This third theme concerned women’s experiences of accessing hepatitis B related care during and after their pregnancies. In interviews, women identified specialists as their main source of hepatitis B related information and recounted their experiences of accessing care throughout their life, including before, during and after pregnancy. Their overall experiences with specialists were positive, with women saying their doctors were important sources of information and their pregnancy provided them with the opportunity to learn more about hepatitis B.
Actually, I am very happy to go through this because the first thing is, if I was not pregnant, I wouldn’t remember [about hepatitis B] … Probably a lot of people have a problem, but they don’t know.
(Participant 1)
Even though women were attending consultations for their own care, the main concern during pregnancy for participants was the health of their child; most expressed worries about transmitting hepatitis B to their child. Women disclosed that they were satisfied to hear from specialists that transmission could be prevented. Participants also reported that receiving clear and useful information from doctors helped to reduce their worries about their child’s health. One woman explained her initial reluctance to start antiviral therapy:
… at first, I was like hesitant—reluctant—to start the medication because I thought it might affect the baby. But after they explained everything to me, they convinced me to start the medication…
(Participant 8)
Women also recounted positive experiences during the post-partum period at the liver clinics, except for two cases, where participants explained not being provided with the result of their child’s blood test which was not linked to the institution to which they were attending for their own care. However, follow up of children was still mentioned by participants when discussing their own experiences. The reassurance gained from specialist sessions concerning their child’s health was described as the main motivator for attendance by women.
The importance of continuing to attend appointments during pregnancy was raised during discussion. Participants mentioned that doctors would encourage attendance and mention the benefits of future monitoring for mothers with hepatitis B beyond their pregnancy.
I was very looked after and if there were any concerns, they made sure that I was monitored and [they were] really friendly, very positive.
(Participant 9)
Factors presented as difficulties for attending appointments included distance, parking, not feeling like attending, and for one participant who due to her visa type needed to pay for the cost of consultations. Women placed emphasis on the friendliness of staff and the atmosphere of the waiting areas at the service location they attended. This is exemplified by a participant who cited a reason for not attending her previous clinic:
Parking was a pain and the place just looked really scary I didn’t like going there very much… ’cause you’re like in a room full of people that you know also have different things as well—and hospitals just look scary.
(Participant 6)
Approximately half of the interviews were conducted by telephone due to the limiting of face to face health service provision as a result of COVID-19 restrictions. Several of the women rescheduled appointments given the disruptions due to the pandemic and preferred using telehealth as it was more flexible. Only two participants expressed preferring attending in person.
With COVID happening, my last appointment got moved to a telephone appointment, which was so much better. […] it was really good just not having to go the extra distance because I live 45 minutes out of the city at the moment and distance—so having to save me doing that drive with a child is awesome.
(Participant 9)
Theme 4: Disclosing status to friends
All women interviewed said they would not usually disclose their hepatitis B status to friends as they feared social exclusion as a result of misconceptions about transmission. Another reason provided was that an individual’s health was a private concern which is not discussed between friends.
I don’t normally tell my friends that I am a hep B carrier because I don’t know how they would think of me […] they might not know much about hepatitis B like me, so they may avoid being close to me…
(Participant 4)
While friends living with hepatitis B were sources of information for some women, others said they kept sharing of information to a minimum or they preferred not to talk about it at all. Some were comfortable in discussing hepatitis B with their friends in general without disclosing their own status. Participants expressed that they felt responsible for protecting others, which was linked to the misconception that HBV is transmitted by sharing of food. This is explained by one woman who, despite now knowing that transmission cannot occur by sharing of food, continued to feel this responsibility. She describes the mental burden of worrying about potentially infecting others:
I believed that if we shared drinks or shared foods we may catch it as well. I didn’t want to affect my friends… I didn’t want them to catch whatever I got. […] I’m just afraid with people, knowing that I’ve got something that can’t be treated or no treatment—it’s like a kind of disability thinking.
(Participant 5)
The connotations of the word ‘hepatitis’ were said by some to include a relationship between HIV and hepatitis B, which made them question what their friends would think if they were to share this information with them. The possibility that friends may not understand how hepatitis B was transmitted also made women hesitant to tell their friends.
Some people may think that “Oh hep B is like HIV!”, you know? “You can get it so easily”—or some people think that if you eat together, they may get it as well.
(Participant 4)
Source: https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-022-13112-0