Women with hepatitis B: how mothers with chronic hepatitis B understand and experience the prevention of mother-to-child transmission interventions in Victoria, Australia
Nafisa Yussf
A B * , Jack Wallace C , Meg Perrier D , Nicole Romero A , Benjamin Cowie A B E and Nicole Allard A B
A WHO Collaborating Centre for Viral Hepatitis, Doherty Institute for Infection and Immunity, Melbourne, Vic. 3000, Australia.
B Department of Infectious Diseases, University of Melbourne, Melbourne, Vic. 3000, Australia.
C Burnet Institute, Melbourne, Vic. 3004, Australia.
D LiverWELL, Melbourne, Vic. 3051, Australia.
E Royal Melbourne Hospital, Melbourne, Vic. 3000, Australia.
Australian Journal of Primary Health 28(6) 514-521 https://doi.org/10.1071/PY22014
Submitted: 21 December 2021 Accepted: 22 August 2022 Published: 26 September 2022
© 2022 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of La Trobe University. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)
Abstract
Background: Mother-to-child transmission (MTCT) of hepatitis B can be prevented with targeted interventions; however, MTCT continues to occur in Australia and globally. This qualitative research investigated how mothers with chronic hepatitis B (CHB) understand and experience interventions for the prevention of MTCT of CHB (PMTCT-CHB) in Victoria, Australia.
Methods: Semi-structured interviews were conducted with women with CHB. Participants were recruited through purposive and snowballing sampling. Interviews explored the women’s experience of care for themselves and their infants aimed at PMTCT-CHB. Interviews were conducted over the phone with a qualified interpreter where required. The consolidated criteria for reporting qualitative research framework was used with data thematically analysed. This study was co-designed with mothers with CHB through a Community Advisory Group established for this research; coordinated and supported by LiverWELL and the researchers.
Results: Sixteen women were interviewed. Although most women understood the purpose of hepatitis B vaccination, there were significant gaps in information and education provided to mothers regarding PMTCT-CHB. These gaps included understanding of the extent of protection of vaccination, breastfeeding with CHB, post-vaccination testing for infants and lack of clarity of the woman’s own hepatitis B status. There was notable fear and worry associated with hepatitis B transmission, with emotional support for mothers identified as a major gap in service delivery. Additionally, some women experienced stigma and discrimination due to their hepatitis B and refugee status.
Conclusions: This study explored how mothers with CHB understand and experience interventions to prevent MTCT. Our findings reveal substantial gaps in delivery of information and care in the context of PMTCT-CHB in Victoria. Our findings can support development of evidence-based interventions and systems to improve healthcare for mothers with CHB and their infants, and thereby reduce possible CHB transmission and other negative outcomes, including stigma and discrimination.
Keywords: community health, health service, health systems, liver cancer, maternal health, mother-to-child transmission, vaccination, viral hepatitis.
References
Allard N, Emery J, Cowie B, Furler J (2018) Knowing and telling: how African-Australians living with chronic hepatitis B understand hepatocellular carcinoma risk and surveillance. Australian Journal of Primary Health 24, 141–148.| Knowing and telling: how African-Australians living with chronic hepatitis B understand hepatocellular carcinoma risk and surveillance.Crossref | GoogleScholarGoogle Scholar |
Allard NL, MacLachlan JH, Tran L, Yussf N, Cowie BC (2021) Time for universal hepatitis B screening for Australian adults. Medical Journal of Australia 215, 103–105.e1.
| Time for universal hepatitis B screening for Australian adults.Crossref | GoogleScholarGoogle Scholar |
Arizona Department of Health Services (2018) ‘Perinatal hepatitis B prevention program manual.’ (Arizona Department of Health Services: Phoenix, AZ, USA) Available at https://azdhs.gov/documents/preparedness/epidemiology-disease-control/immunization/healthcare-professionals/perinatal-hepatitis-b-manual.pdf [Verified 20 December 2020]
Australian Government Department of Health (2018) ‘Third National Hepatitis B Strategy 2018–2022.’ (Australian Government Department of Health: Canberra, Australia) Available at https://www1.health.gov.au/internet/main/publishing.nsf/Content/ohp-bbvs-1/$File/Hep-B-Third-Nat-Strategy-2018-22.pdf [Verified 8 July 2020]
Berkman ND, Sheridan SL, Donahue KE, et al. (2011) Low health literacy and health outcomes: an updated systematic review. Annals of Internal Medicine 155, 97–107.
| Low health literacy and health outcomes: an updated systematic review.Crossref | GoogleScholarGoogle Scholar |
Crenshaw K (1989) Demarginalizing the intersection of race and sex: a black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. University of Chicago Legal Forum 1989, 8
Deng A (2021) Uptake of perinatal immunoprophylaxis for infants born to women with a record of hepatitis B in Victoria (2009–2017). Presented at the Australasian viral hepatitis conference, Brisbane, Australia.
Giles ML, Garland SM, Sasadeusz JJ, Grover SR, Hellard ME (2004) An audit of obstetricians’ management of women potentially infected with blood-borne viruses. The Medical Journal of Australia 180, 328–332.
| An audit of obstetricians’ management of women potentially infected with blood-borne viruses.Crossref | GoogleScholarGoogle Scholar |
Giles ML, Grace R, Tai A, Michalak K, Walker SP (2013) Prevention of mother-to-child transmission of hepatitis B virus (HBV) during pregnancy and the puerperium: current standards of care. Australian and New Zealand Journal of Obstetrics and Gynaecology 53, 231–235.
| Prevention of mother-to-child transmission of hepatitis B virus (HBV) during pregnancy and the puerperium: current standards of care.Crossref | GoogleScholarGoogle Scholar |
Lavanchy D (2004) Hepatitis B virus epidemiology, disease burden, treatment, and current and emerging prevention and control measures. Journal of Viral Hepatitis 11, 97–107.
| Hepatitis B virus epidemiology, disease burden, treatment, and current and emerging prevention and control measures.Crossref | GoogleScholarGoogle Scholar |
Le Gautier R, Wallace J, Richmond JA, Pitts M (2021) The role of explanatory models of chronic hepatitis B on illness experience: a qualitative study of Vietnamese participants in Australia. Ethnicity & Health 26, 1225–1241.
| The role of explanatory models of chronic hepatitis B on illness experience: a qualitative study of Vietnamese participants in Australia.Crossref | GoogleScholarGoogle Scholar |
MacLachlan JH, Smith C, Towell V, Cowie BC (2020) Viral hepatitis mapping project: national report 2018–19. Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM), Sydney, NSW, Australia. Available at https://www.ashm.org.au/resources/hcv-resources-list/viral-hepatitis-mapping-project-national-report-2018-2019/; https://ashm.org.au/programs/Viral-Hepatitis-Mapping-Project/ [Verified 2020]
Markey PG, White HA, Matthews AT, Strebor CR, Krause V (2017) Prevention of perinatal hepatitis B virus transmission: are we following guidelines? Communicable Diseases Intelligence Quarterly Report 41, E195–E198.
Mude WW, Fisher CM, Gautier RL, Wallace J, Richmond JA (2020) South Sudanese perceptions of health and illness in South Australia. International Journal of Migration, Health and Social Care 16, 469–479.
| South Sudanese perceptions of health and illness in South Australia.Crossref | GoogleScholarGoogle Scholar |
Navabakhsh B, Mehrabi N, Estakhri A, Mohamadnejad M, Poustchi H (2011) Hepatitis B virus infection during pregnancy: transmission and prevention. Middle East Journal of Digestive Diseases 3, 92–102.
New York State Department of Health (2011) ‘Perinatal hepatitis B prevention program manual.’ (New York State Department of Health: Albany, NY, USA) Available at https://www.health.ny.gov/diseases/communicable/hepatitis/hepatitis_b/perinatal/docs/program_manual.pdf [Verified 20 December 2020]
NSW Health (2017) ‘Neonatal hepatitis B prevention and vaccination program.’ (NSW Health: Sydney, NSW, Australia) Available at https://www1.health.nsw.gov.au/pds/ActivePDSDocuments/PD2017_036.pdf [Verified 21 December 2020]
Roder C, Chand S, Streat S, Beynon S, Huning E, Dabkowski P, Athan E, Wade AJ (2021) Pregnancy – a key moment for engaging women with hepatitis B in care. Australian and New Zealand Journal of Public Health 45, 299–300.
| Pregnancy – a key moment for engaging women with hepatitis B in care.Crossref | GoogleScholarGoogle Scholar |
Shen EX, Lambert SB, Malo JA, Bennett S, Sheridan SL, Vasant BR, Ware RS (2019) Perinatal immunoprophylaxis in babies born to hepatitis B virus-positive mothers in Queensland Australia: a data linkage study. Vaccine 37, 2884–2888.
| Perinatal immunoprophylaxis in babies born to hepatitis B virus-positive mothers in Queensland Australia: a data linkage study.Crossref | GoogleScholarGoogle Scholar |
Strauss AL, Corbin JM (1990) ‘Basics of qualitative research: grounded theory procedures and techniques.’ (Sage Publications: Newbury Park, CA, USA) Available at https://us.sagepub.com/en-us/nam/basics-of-qualitative-research/book235578 [Verified 7 July 2019]
Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care 19, 349–357.
| Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.Crossref | GoogleScholarGoogle Scholar |
Tran S, Bennett G, Richmond J, Nguyen T, Ryan M, Hong T, Howell J, Demediuk B, Desmond P, Bell S, Thompson A (2019) ‘Teach-back’ is a simple communication tool that improves disease knowledge in people with chronic hepatitis B – a pilot randomized controlled study. BMC Public Health 19, 1355
| ‘Teach-back’ is a simple communication tool that improves disease knowledge in people with chronic hepatitis B – a pilot randomized controlled study.Crossref | GoogleScholarGoogle Scholar |
Wallace J, McNally S, Richmond J, Hajarizadeh B, Pitts M (2011) Managing chronic hepatitis B: a qualitative study exploring the perspectives of people living with chronic hepatitis B in Australia. BMC Research Notes 4, 45
| Managing chronic hepatitis B: a qualitative study exploring the perspectives of people living with chronic hepatitis B in Australia.Crossref | GoogleScholarGoogle Scholar |
World Health Organization (2020) ‘Prevention of mother-to-child transmission of hepatitis B virus: guidelines on antiviral prophylaxis in pregnancy.’ (World Health Organization: Geneva) Available at https://www.who.int/publications/i/item/978-92-4-000270-8 [Verified 27 July 2020]
World Health Organization (2021) ‘Hepatitis B.’ (World Health Organization: Geneva, Switzerland) Available at https://www.who.int/news-room/fact-sheets/detail/hepatitis-b [Verified 27 July 2021]
