Mothers Living with Hepatitis B - A Needs and Assets Assessment

Hello everyone,

I am a new member of the forum and finding it very interesting and really enjoying reading through the posts.

Our team has just finished a project about mothers living with hepatitis B who gave birth at a hospital in our health district. We wanted to find out what is working and what we could do better.

We looked at records from January 2019 to September 2022. Over this time 172 different women had at least one baby.

Some mothers agreed to have a more in depth, one on one interview which gave us some valuable insights.

We also spoke to key staff who work in maternity, multicultural health and specialist liver clinics.

What we learnt:

Most women (88%) were born overseas. One in six women did not have Medicare, which we know is a barrier to getting ongoing follow up.

There was a big focus on the health of babies during this time, which we would of course expect. But there was limited documentation of the plan for mothers to receive ongoing care for their hepatitis B.

During one on one interviews, we learnt about the challenges mothers have in prioritising their own follow up during such a busy time of life. Mothers also described a lack of choices to find information from experts when they’ve had a baby.

“[I have two children], four and six years old, and I was quite busy, actually. So, I have not been like regularly going to GP for my check. When I go to the GP, most likely for [my children’s] things. So it’s hard, and I think it’s hard, like especially you have you have done like so many tests and then saying that, uh, you are OK. So, go back like to check every twice a year is difficult. Maybe I will go like just once a year. Yeah, if I can. Yeah.”

“I used to get reminder letters. But only recently, I think because of COVID and stuff, not so much anymore reminders. So I’ve kind of forgotten about it, to be honest. Because now it’s kind of well for me, like my kids now the centre of attention. I’ve kind of forgotten about all those appointments and all those checkups that I should be doing.”

“I don’t know anyone that has hepatitis B in here. [People from China] are a little bit embarrassed to talk about this, or what I have, hepatitis B. Some people would be afraid of contacting with you, you know.”

What we need to do:

· Give clear referral pathways with options to help women get their follow up easily after giving birth

· Build the knowledge and capacity of our workforce and get better relationships between staff working in hepatitis B and maternity services

· Work out how to make the regular monitoring visits women need easier and closer to home

· Campaign for treatment options for people who are ineligible for Medicare

· Explore options for women to get support from other mothers. Perhaps Hep B Community can fill a part of this gap?

4 Likes

Hi @Julie,
Great assessment. I think it is concerning that the mothers health falls to the way side when they are actually diagnosed with HBV. The babies get all the attention and care. Both mothers and babies need continued care and treatment. Hopefully, this can be improved so everyone receives the necessary care they need. Nobody deserves to feel abandoned or unworthy. Thanks, Bansah1.

Thanks @Julie for this interesting overview of your research. It would be great to hear if anyone who has been through pregnancy on this forum feels the same way and relates to these experiences. Or @HealthExperts who have either researched or anecdotally hear about the same things.

Thomas