Women with hepatitis B: how mothers with chronic hepatitis B understand and experience the prevention of mother-to-child transmission interventions in Victoria, Australia

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, postvaccination 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.

Mapping the delivery of interventions for vaccine-preventable infections in pregnancy in Victoria, Australia

“…National and international research indicates that pregnant women did not have adequate hepatitis B knowledge and information to make informed decisions to prevent MTCT (World Hepatitis Alliance 2022; Yussf et al 2022). It is critical that healthcare services engage with pregnant women and their families to ensure they are supported to prevent MTCT.…”

An Intersectional Approach to Hepatitis B

“…Most people living with or affected by hepatitis B are members of dynamic, multigenerational, transnational social networks, but public health and clinical responses to hepatitis B in Australia focus largely on individuals and populations living within Australia. This downplays the lived experience of hepatitis B as a familial, intergenerational, chronic, and sometimes fatal condition that in many communities and countries can result in significant social marginalisation and limit economic and educational opportunities [ 25 , 26 , 27 ].…”

“…It is therefore unsurprising that many of the communities most affected by hepatitis B use explanatory health belief models differing from the biomedical. Explanations of hepatitis B-related liver disease can include war, poor living standards in early life, a curse, immoral behaviour, diet, or shock [ 27 , 30 ]. The difference from a biomedical understanding is extended by the absence of physical symptoms for most people with hepatitis B for whom illness is only a concern where symptoms exist.…”

“…Hepatitis B—or rather, the awareness of its diagnosis—may change a person’s sense of self and their ability to live a fulfilling life as a member of their society. The psychosocial impact of the diagnosis may be felt before any physical symptoms through the imposition of formal restrictions on migration, employment, and recreation, or through informal restrictions such as acceptability as an intimate partner or spouse [ 26 , 27 ]. Another burden following diagnosis is the time commitment, economic burden, and psychological stress of prolonged engagement with the health system, often in the absence of symptoms or pharmaceutical treatment [ 32 ].…”

“…The physical, psychological and social impacts of hepatitis B are strongly influenced by sex and gender: men have higher rates of infection, progression to chronic infection, and complications, related to biological and social factors [ 35 ]. However, women are frequently diagnosed through antenatal screening, which provides access to treatment but presents psychosocial challenges such as health risks to unborn children and exposure to stigma and discrimination due to presumed immorality [ 25 , 27 , 35 ].…”